It's been 8 years, 8 months and 4 days since October 6, 2005, the day I was finally diagnosed with the chronic pain I had been suffering since the middle of August 2005. The diagnosis has been refined and clarified since then, of course.....it started out as "chronic migraine" and now is much more.
The official diagnoses now are as follows:
chronic migraine
right-sided persistent idiopathic facial pain
occipital neuralgia
allodynia
sensitivity to light (photophobia)
sensitivity to sound (hyperacusis)
constant ringing in my ears (tinnitus)
fibromyalgia
PTSD
OCD
major depressive disorder
These multiple diagnoses have led to other diagnoses, of course. I've developed an exercise intolerance due to the sensitivity to sound and light, and that has led to the fibro as well as to a bad knee on the left and to plantar fasciitis on the right. I'd love to just exercise like I used to but it makes me hurt so much, it's hard to even get motivated. I do better if I can bear to get on the exercise bike and do a few miles 3-4 times a week but sometimes it takes everything I have just to get from morning till night. I also have obstructive sleep apnea as a result of gaining weight because I can't exercise like I should. Due to my latex allergy and my claustrophobia as well as the pain in my face -- not head, but face -- and the fact that pressure on the right side of my face leads to more pain (the allodynia) I can't wear a CPSP, BiPAP, or miniPAP. This means I'm also seriously sleep deprived and will probably have to stop driving in the next few years so I don't nod off while I'm on the road and get in an accident.
I've developed numerous drug allergies and because of that I can only take a small number of meds to control my pain. The most efficacious long term pain med I can take, and do take, is methadone. I know it's been associated with heroin withdrawal for a long time, but for a long time before that it was used for chronic pain. It has a long half-life (the amount of time it takes to clear out of the body) so I don't have to take it every 4-6 hours like short-acting narcotics, and since I can't take any time-release drugs due to my previous gastric bypass, I can't do oxycontin or MS contin or any of those. I also take Lexapro to help with the nerve pain. Don't ask me how it works because I haven't got a clue. I just know that if I'm not on an antidepressant it feels like someone has split my scalp and peeled it back kinda like you do an orange, and the nerves on my head are all way up there at the top and someone is stomping on them with spiked boots. It HURTS. It's unbearable. I just can't handle it. I'm glad the Lexapro helps; really, I am. It keeps me functioning together with the methadone. Before we found this combination I spent an awful lot of time lying on the couch in the dark, asking God to help me make it, counting the hours till I could have my next dose of Vicodin. It wasn't pretty.
And before you wonder -- no, I am not pain free. The methadone doesn't work like that. Besides, if I had enough of it to make me pain free, I'd be dead. It has a few side effects, one of which is extreme sleepiness. I'm taking as much as I can without bordering on Rip Van Winkle status. Fortunately, it's enough to help me stay functional to a pretty good degree. I keep the house pretty clean, though not as clean as it used to be; I can shop and cook and sew and take care of the cats and even have my grandkids over for the night. I can't always drive, and I'm smart enough to recognize when I'm not safe on the road. My hubby is great about either taking me to the store if I need him to or, on bad days, going to the store for me and getting a few things. I run pretty consistently a 5-6 on a scale of 10 as far as pain goes. I have meds for breakthrough pain, meds for migraines, and if the migraine pain gets too bad for the Maxalt, I have the option of going to the ER and getting a shot of Dilaudid in my butt.
I haven't had to do an ER run for a couple of years now, thank goodness. I was getting downright messed with by the local ER -- they accused me of drug-seeking behavior and actually at one point refused to treat me until I got up and walked out, at which point they tried to talk me into staying. Needless to say I left. I told hubby if I was going to feel like death warmed over, I could do that just as well at home. It was at that time I became ashamed I had been part of the medical profession. I also fully realized how genuinely chronically ill people are mistreated in Emergency Rooms and doctor's offices and even by the general public, especially if the illness is invisible. They can't wrap their heads around someone who doesn't *look* sick being sick, and because they can't accept it, they decide it's a lie and they treat the ill person like they're a liar. They're rude and they get ugly if you have to cancel another party or gathering or if you have to leave early because you can't cope with the sounds of happy people making noise....sometimes that noise is more than I can bear. It makes me want to beat my head against the wall. Considering how much my head hurts, that's pretty intense, don't you think? My own mom told me I needed to get out and get a job -- that staying at home all the time wasn't helping me at all and that I needed to stop feeling sorry for myself and get back to work. She, like many others, didn't get it. I think by now she's starting to see it's not as insignificant as it looks, this chronic illness thing. It's draining and demoralizing and depressing and discouraging and if you're not really careful it will suck the life right out of you.
I don't know what I'd do or where I'd be without my faith. I prayed almost constantly for a very long time, and I pray off and on all day long even now. My faith in God, my trust that there is something better waiting for me in Glory, my hope that what I'm going through isn't for nothing....it sustains me. It gives me a reason to get up in the morning and to keep on putting one foot in front of the other. My relationship with God is up close and personal. I've experienced personal salvation; I've received the baptism in the Holy Spirit; I speak in tongues; and it is my lifeline in a world that sometimes overwhelms me. God is with me every minute of every day and knowing He is walking this with me makes all the difference in the world. Knowing that He sees and knows what I'm going through lightens my burden. Knowing He was there when I was younger, knowing He had things in His hands, kept me going through the abuse and molestation I endured as a young child and young adult. I knew in my heart that He was holding me when I felt so alone that I almost lost hope. It's hard being a child who's being abused and nobody believes it. It's hard being blamed for things that you have no control over. It's hard when your caretakers betray you either by violence, neglect, or abandonment. It affects who you are then as well as how you grow up. Leaning on God and Jesus is the only thing that really helped me when I faced the taunts, the accusations, the blame, and the isolation that being abused leads to. God taught me about love, and I owe Him my life as well as what sanity I have today. I can't put into words what my relationship with God means to me. There aren't words to express it. He is such an integral part of me that if you tried to separate us I'd die. I'm blessed that He didn't leave me to myself but instead made sure I came across the right things in the right time that led me right to His heart, His arms and His love.
Well, enough for today. I need to try and get some sleep before it gets too light out. Besides, one of the cats just left me a present in the litter box and I need to scoop it before I asphyxiate.
God bless and keep you today and in the coming week.
Monday, February 10, 2014
Tuesday, December 10, 2013
Day 2983 -- almost 3000 days
And time goes dragging on......
and taking me with it, whether I like it or not.
I have my dentures but I can't eat much with them in. Apparently I have a very shallow jaw and by the time they trimmed the lower dentures to fit my mouth, there's no room for adhesive and there's no suction between the gum and denture. So.....if I want to eat solids, I have to take them out. So much for eating a meal with my teeth in, unless it's yogurt or cottage cheese.
Moving on......
My dear, sweet, loving hubby had cataract surgery in both eyes. I didn't honestly know -- somehow I missed that when he told me his eyes needed to be checked, that they REALLY needed to be checked. He needed them taken care of. Fortunately we found a great ophthalmologist in Washington, MO, less than an hour from here, and less than 5 weeks from the time we found out about the cataracts they were being dealt with. Now he'll only need glasses for reading and he says he can already see better! Yahoo! I feel bad that I missed the message he was giving me, though....how did I not hear what he was saying?
It's winter and it sucks. I sleep and sleep and sleep and I can't get warm. I'm wearing two shirts -- a turtleneck and a sweatshirt; I have on leggings and a skirt; I have on socks and slippers....and my hands and nose are cold. If I turn up the heat so I'm warm then I can't breathe because the heat steals the moisture from the air. Oh, how I don't like being me sometimes.....
Pain-wise, things are pretty much status quo. It sucks and that's how it is. I'm tired of being tired. I'm tired of nodding off during movies and TV shows and (gasp!) I even dozed off at my sister-in-law's funeral on Saturday. It's hard to drive because I lose focus and I'm scared unless I've managed to get some sleep that I'm gonna fall asleep while I'm driving. I don't sleep much in spite of the fatigue because of the sleep apnea and my right heel (heel spurs or plantar fasciitis or both) and my left knee (I need a cortisone injection, which **hurts**) and my sleep apnea. If I get more than 2 hours at a time it's like a vacation. Like an epiphany. Like a miracle. I sleep off and on most of the day.
I've been busy making Christmas presents because this year we are stinkin' flat broke, so my sleep pattern is even more interrupted. Hubby's work decided not to honor his light duty even though they did when he had his appendectomy because people have been milking the light duty thing so he got to pay for their screwing around....and so we are missing several days of work and, consequently, pay for the past few weeks. Last week his check was just over $200. That sucks. Let me tell you how much that sucks when the guy has been working for over 50 years and he only gets $200 in a week. It's aggravating. It's also hard to pay the bills. If it wasn't for my disability we'd be screwed big time. Thank God in heaven for my disability! It pays the bills and we live (eat, get gas, etc.) on hubby's checks. That makes it interesting when he gets a pittance because he had to have his eye surgery done while we still have decent insurance. We have to take advantage of that while we can. We don't know how long hubby will be able to keep working with his progressive lower extremity neuropathy and we have no idea what the union will pull when the contract negotiations come through this year, so I'm glad we got them done while the getting was good.
I try to stay positive but it's hard sometimes. We're going to sell this year one way or another. I can't keep living so close to Becky and know I can't see the grandkids; I can't talk to the grandkids; who knows what she's told them about us. It's so frustrating....I don't know how people can do this to family. I suffered tremendously at my mom's hands when I was growing up but I always talked to her. She's my MOM. She deserves respect for that alone, even if I don't like how she mistreated me when I was a kid. I just don't get it. It's been 6 or 7 years since she's let me see her kids, and I don't know if she'll ever let me see them. All I can do is pray. With them living next to us I am concerned it's affecting my health, both mentally and physically. I don't want to go out and do stuff outside if it means hearing and seeing the kids, knowing I can't even say hello to them. It makes my heart ache. So, we're getting out of here. I'm not sure how far we're going, but we need to get away from this pain. I need to be somewhere that I can look out my window and not see that house over there and know I'm not welcome. In fact they threatened to call the cops if I come over. How nice is that? I'm not a monster! I did my best and it's not my fault it wasn't enough for her. I prayed for her just like my other two kids, and I gave all I had to give. It hurts to know she has that much hate for me and she's holding such bitterness. I pray her kids don't do this to her. I wouldn't wish it on anyone. I need to be somewhere that I can relax and not have that constant stressor 2 minutes' walk from my front door.We may have to practically give the place away but we'll do what it takes to pay off the mortgage and get out of here. I'd like it if we could have at least $20K to take with us but if it comes down to it we'll take enough to pay off the mortgage and go free and clear with nothing. I'm prepared to do that if it comes down to it. I don't want to have to rent for the rest of my life but then again it's nice to have a landlord to call when things go wrong and not to have to be responsible for everything that breaks. I'd like it if we could go south this year but I don't know....we'll just have to take it as it goes.
Another novella.....and my mind is still full to overflowing. I really need to start on that book.
Merry Happy whatever. Holidays are okay sometimes but it's hard....if I cook, I'm too tired to enjoy. This year Abby cooked for Thanksgiving and I still had to stay home because I was so tired from driving to the funeral with hubby and my stomach was upset and I hurt. I don't even hardly remember what it feels like to be pain free. We take so much for granted....God, help me see the blessings in my life I miss in my daily walk. Help me appreciate what You've given us. Thank you.
Gotta go put the feet up. They're swelling again.
and taking me with it, whether I like it or not.
I have my dentures but I can't eat much with them in. Apparently I have a very shallow jaw and by the time they trimmed the lower dentures to fit my mouth, there's no room for adhesive and there's no suction between the gum and denture. So.....if I want to eat solids, I have to take them out. So much for eating a meal with my teeth in, unless it's yogurt or cottage cheese.
Moving on......
My dear, sweet, loving hubby had cataract surgery in both eyes. I didn't honestly know -- somehow I missed that when he told me his eyes needed to be checked, that they REALLY needed to be checked. He needed them taken care of. Fortunately we found a great ophthalmologist in Washington, MO, less than an hour from here, and less than 5 weeks from the time we found out about the cataracts they were being dealt with. Now he'll only need glasses for reading and he says he can already see better! Yahoo! I feel bad that I missed the message he was giving me, though....how did I not hear what he was saying?
It's winter and it sucks. I sleep and sleep and sleep and I can't get warm. I'm wearing two shirts -- a turtleneck and a sweatshirt; I have on leggings and a skirt; I have on socks and slippers....and my hands and nose are cold. If I turn up the heat so I'm warm then I can't breathe because the heat steals the moisture from the air. Oh, how I don't like being me sometimes.....
Pain-wise, things are pretty much status quo. It sucks and that's how it is. I'm tired of being tired. I'm tired of nodding off during movies and TV shows and (gasp!) I even dozed off at my sister-in-law's funeral on Saturday. It's hard to drive because I lose focus and I'm scared unless I've managed to get some sleep that I'm gonna fall asleep while I'm driving. I don't sleep much in spite of the fatigue because of the sleep apnea and my right heel (heel spurs or plantar fasciitis or both) and my left knee (I need a cortisone injection, which **hurts**) and my sleep apnea. If I get more than 2 hours at a time it's like a vacation. Like an epiphany. Like a miracle. I sleep off and on most of the day.
I've been busy making Christmas presents because this year we are stinkin' flat broke, so my sleep pattern is even more interrupted. Hubby's work decided not to honor his light duty even though they did when he had his appendectomy because people have been milking the light duty thing so he got to pay for their screwing around....and so we are missing several days of work and, consequently, pay for the past few weeks. Last week his check was just over $200. That sucks. Let me tell you how much that sucks when the guy has been working for over 50 years and he only gets $200 in a week. It's aggravating. It's also hard to pay the bills. If it wasn't for my disability we'd be screwed big time. Thank God in heaven for my disability! It pays the bills and we live (eat, get gas, etc.) on hubby's checks. That makes it interesting when he gets a pittance because he had to have his eye surgery done while we still have decent insurance. We have to take advantage of that while we can. We don't know how long hubby will be able to keep working with his progressive lower extremity neuropathy and we have no idea what the union will pull when the contract negotiations come through this year, so I'm glad we got them done while the getting was good.
I try to stay positive but it's hard sometimes. We're going to sell this year one way or another. I can't keep living so close to Becky and know I can't see the grandkids; I can't talk to the grandkids; who knows what she's told them about us. It's so frustrating....I don't know how people can do this to family. I suffered tremendously at my mom's hands when I was growing up but I always talked to her. She's my MOM. She deserves respect for that alone, even if I don't like how she mistreated me when I was a kid. I just don't get it. It's been 6 or 7 years since she's let me see her kids, and I don't know if she'll ever let me see them. All I can do is pray. With them living next to us I am concerned it's affecting my health, both mentally and physically. I don't want to go out and do stuff outside if it means hearing and seeing the kids, knowing I can't even say hello to them. It makes my heart ache. So, we're getting out of here. I'm not sure how far we're going, but we need to get away from this pain. I need to be somewhere that I can look out my window and not see that house over there and know I'm not welcome. In fact they threatened to call the cops if I come over. How nice is that? I'm not a monster! I did my best and it's not my fault it wasn't enough for her. I prayed for her just like my other two kids, and I gave all I had to give. It hurts to know she has that much hate for me and she's holding such bitterness. I pray her kids don't do this to her. I wouldn't wish it on anyone. I need to be somewhere that I can relax and not have that constant stressor 2 minutes' walk from my front door.We may have to practically give the place away but we'll do what it takes to pay off the mortgage and get out of here. I'd like it if we could have at least $20K to take with us but if it comes down to it we'll take enough to pay off the mortgage and go free and clear with nothing. I'm prepared to do that if it comes down to it. I don't want to have to rent for the rest of my life but then again it's nice to have a landlord to call when things go wrong and not to have to be responsible for everything that breaks. I'd like it if we could go south this year but I don't know....we'll just have to take it as it goes.
Another novella.....and my mind is still full to overflowing. I really need to start on that book.
Merry Happy whatever. Holidays are okay sometimes but it's hard....if I cook, I'm too tired to enjoy. This year Abby cooked for Thanksgiving and I still had to stay home because I was so tired from driving to the funeral with hubby and my stomach was upset and I hurt. I don't even hardly remember what it feels like to be pain free. We take so much for granted....God, help me see the blessings in my life I miss in my daily walk. Help me appreciate what You've given us. Thank you.
Gotta go put the feet up. They're swelling again.
Wednesday, July 31, 2013
Update time....day 2851 and counting
So, all the teeth are gone. As of yesterday I have my dentures fully relined and they are in my permanent (I hope!) possession. I'm sure they'll need some readjustment but hey - at least that nasty functional reliner is gone. I thought that thing would be the death of me.
I'm still hanging in there, but this past week or so I've been on a sleeping pattern. I guess you can only go without sleep for so long before your body demands you get some. With the apnea and the pain I don't sleep well at all, and every so often I go through a period where it seems I'm eternally tired, often on the verge of narcolepsy, and I doze off every time I sit still. I'm serious....I've fallen asleep while at the sewing machine, come close to dozing while driving, and even fallen asleep on the toilet or while doing the dishes. It's scary sometimes. I'm hoping now that we have the denture issue solved I can go back to the other dentist at the office and check into getting an oral appliance for my sleep apnea. I can't wear a mask of any kind since the facial pain precludes any pressure on the right side of my face and often the back of my head as well, but I did speak with the other dentist in the practice and she, as a sleep apnea specialist, showed me an older oral appliance that might work for me. The thing is we have to save up the money for it first since my dentures drained our FSA as well as using up our $1800 yearly limit on dental procedures. So I'll wait, and save, and hopefully soon we can get this taken care of too.
I'm trying to lose weight, I really am....but I'm such an emotional eater that any kind of stress sets me off and man, has our life been full of stress!
Son's girlfriend just up and quit her job, after he got fired, and left him as the only person supporting the family. He washes windows and barely makes enough to pay the rent and sometimes the electric bill. It's crazy. I don't know what she was thinking. Maybe she needs to see a shrink and get on disability. She certainly doesn't do well with people. Her job was fine; she just got mad because she wasn't promoted fast enough. Goodness!!!! Then there's the fact that JR's license was suspended so now he can't drive - not that they have a car anyhow - so he rides his borrowed bike to his window washing jobs or now, he rides with his new business partner -- so he's splitting the bit he makes with someone else. I don't get it. I just don't get it. She did finally get off her butt and apply for food stamps, but she missed the appointment so I don't know what's going on with that. I know when I saw the fridge last night it was close to empty. It makes me ANGRY that they are letting their kids go without because she's got personality issues.
Oldest daughter Abby is now pregnant with #5. She's working part time in a frozen yogurt shop because Applebee's wouldn't give her the hours she needed, and she was getting doubles, which isn't good when you're pregnant; she took a medical leave from there till after the baby comes, and she's now talking about not going back at all. Finally, they got food stamps. At least now I know the kids can eat. They home school the boys, and her husband has seizure disorder so he's on disability...that family is so special to me...just like JR's. All my kids are precious to me.
Then there's Becky, who still won't talk to me or allow me to see their 4 children. It breaks my heart, and even more because they live on the property adjoining ours. I don't know how I do it every day. I guess I just trust God to get me through. There's no other option, is there? I'd be going crazy otherwise. I can't see how she can be so vengeful and bitter....I pray for her daily, and I pray that she comes to her senses before it's too late.
So that's part of why I'm a bit stressed.
Then there's the fact that we'd like to sell so hubby can retire and we can move but he wants more for the place than it's going to sell for. He's not being realistic. He needs to come down several thousand dollars on the price or I'll still be here when he dies. I get frustrated at times with that situation too. I love him but he seems to think that in this economy we're gonna get tons of bites on a single wide mobile home, which you can't get a mortgage for, and people want houses or mobile homes on a foundation, which ours doesn't have. We need to come down by, actually, about 20K to have a chance to sell, even on such a pretty piece of land and all. The neighbors - yes, I mean my daughter and her in-laws - are slobs, and there's junk all over the place on the property, and it's an eyesore. However, we live in the county, and there aren't many rules as long as it's not a health hazard and there aren't more than a certain number of un-licensed vehicles in the mix. So......that adds to the difficulty selling. I almost wish we could sell it now when the grass is green and stuff - their property looks better now than in the winter.
I'm still on the Methadone and this spring and early summer with the teeth and all I've been taking more of the Maxalt than I have in a while. Thank goodness for generics! It's finally available in generic, which I can get for just over 10% of my copay for the brand name pills. Talk about a difference! The brand names were costing about $135 for 12 pills and I get the generics for $16. Same med - just not brand name. Usually the prices are higher for generics than this one came out at but I think the company knew lots of folks couldn't afford the retail price of the brand name....that, or they got so rich from the brand name they didn't need to leave the price so high. I don't know exactly, but I'm thrilled.
This coming month makes 8 years of being in pain every minute of every day. Wow; it's been that long? It seems like yesterday I was working as a nurse and loving it....and then other times I can't remember what it felt like not to hurt. What did it feel like not to hear ringing in my ears? What did it feel like not to be blinded by normal sunshine? When was I able to open the curtains in the house all the way? I don't remember sleeping for more than a few (4 at the most) hours since I got sick, either. That's hard on a body. Without my faith I'd be mean, grumpy, bitter, or dead. It's only because of God that I keep going, keep hoping, keep wishing for release from this mess in my head/face/nerves....
Yep. That's about it for today.
I'm still hanging in there, but this past week or so I've been on a sleeping pattern. I guess you can only go without sleep for so long before your body demands you get some. With the apnea and the pain I don't sleep well at all, and every so often I go through a period where it seems I'm eternally tired, often on the verge of narcolepsy, and I doze off every time I sit still. I'm serious....I've fallen asleep while at the sewing machine, come close to dozing while driving, and even fallen asleep on the toilet or while doing the dishes. It's scary sometimes. I'm hoping now that we have the denture issue solved I can go back to the other dentist at the office and check into getting an oral appliance for my sleep apnea. I can't wear a mask of any kind since the facial pain precludes any pressure on the right side of my face and often the back of my head as well, but I did speak with the other dentist in the practice and she, as a sleep apnea specialist, showed me an older oral appliance that might work for me. The thing is we have to save up the money for it first since my dentures drained our FSA as well as using up our $1800 yearly limit on dental procedures. So I'll wait, and save, and hopefully soon we can get this taken care of too.
I'm trying to lose weight, I really am....but I'm such an emotional eater that any kind of stress sets me off and man, has our life been full of stress!
Son's girlfriend just up and quit her job, after he got fired, and left him as the only person supporting the family. He washes windows and barely makes enough to pay the rent and sometimes the electric bill. It's crazy. I don't know what she was thinking. Maybe she needs to see a shrink and get on disability. She certainly doesn't do well with people. Her job was fine; she just got mad because she wasn't promoted fast enough. Goodness!!!! Then there's the fact that JR's license was suspended so now he can't drive - not that they have a car anyhow - so he rides his borrowed bike to his window washing jobs or now, he rides with his new business partner -- so he's splitting the bit he makes with someone else. I don't get it. I just don't get it. She did finally get off her butt and apply for food stamps, but she missed the appointment so I don't know what's going on with that. I know when I saw the fridge last night it was close to empty. It makes me ANGRY that they are letting their kids go without because she's got personality issues.
Oldest daughter Abby is now pregnant with #5. She's working part time in a frozen yogurt shop because Applebee's wouldn't give her the hours she needed, and she was getting doubles, which isn't good when you're pregnant; she took a medical leave from there till after the baby comes, and she's now talking about not going back at all. Finally, they got food stamps. At least now I know the kids can eat. They home school the boys, and her husband has seizure disorder so he's on disability...that family is so special to me...just like JR's. All my kids are precious to me.
Then there's Becky, who still won't talk to me or allow me to see their 4 children. It breaks my heart, and even more because they live on the property adjoining ours. I don't know how I do it every day. I guess I just trust God to get me through. There's no other option, is there? I'd be going crazy otherwise. I can't see how she can be so vengeful and bitter....I pray for her daily, and I pray that she comes to her senses before it's too late.
So that's part of why I'm a bit stressed.
Then there's the fact that we'd like to sell so hubby can retire and we can move but he wants more for the place than it's going to sell for. He's not being realistic. He needs to come down several thousand dollars on the price or I'll still be here when he dies. I get frustrated at times with that situation too. I love him but he seems to think that in this economy we're gonna get tons of bites on a single wide mobile home, which you can't get a mortgage for, and people want houses or mobile homes on a foundation, which ours doesn't have. We need to come down by, actually, about 20K to have a chance to sell, even on such a pretty piece of land and all. The neighbors - yes, I mean my daughter and her in-laws - are slobs, and there's junk all over the place on the property, and it's an eyesore. However, we live in the county, and there aren't many rules as long as it's not a health hazard and there aren't more than a certain number of un-licensed vehicles in the mix. So......that adds to the difficulty selling. I almost wish we could sell it now when the grass is green and stuff - their property looks better now than in the winter.
I'm still on the Methadone and this spring and early summer with the teeth and all I've been taking more of the Maxalt than I have in a while. Thank goodness for generics! It's finally available in generic, which I can get for just over 10% of my copay for the brand name pills. Talk about a difference! The brand names were costing about $135 for 12 pills and I get the generics for $16. Same med - just not brand name. Usually the prices are higher for generics than this one came out at but I think the company knew lots of folks couldn't afford the retail price of the brand name....that, or they got so rich from the brand name they didn't need to leave the price so high. I don't know exactly, but I'm thrilled.
This coming month makes 8 years of being in pain every minute of every day. Wow; it's been that long? It seems like yesterday I was working as a nurse and loving it....and then other times I can't remember what it felt like not to hurt. What did it feel like not to hear ringing in my ears? What did it feel like not to be blinded by normal sunshine? When was I able to open the curtains in the house all the way? I don't remember sleeping for more than a few (4 at the most) hours since I got sick, either. That's hard on a body. Without my faith I'd be mean, grumpy, bitter, or dead. It's only because of God that I keep going, keep hoping, keep wishing for release from this mess in my head/face/nerves....
Yep. That's about it for today.
Monday, February 25, 2013
Has it been that long? Day 2697
Oh my gosh. I can't believe I haven't written in here for a year. Wow.
So I was supposed to have the other half of my teeth pulled this past Friday but we were snowed in. It's been rescheduled for May 9th and I'm on the cancellation list. After the teeth come out and the gums heal, I can get fitted for my dentures. I can't wait till this is over. I want teeth back!!!
It's been a rough year. My dad died this past December and, remarkably or not, I had basically no feelings about it. He was my dad, but he was dad in absentia, and there wasn't really a relationship there. He didn't like my kids - well, except Becky - and I have trouble with people, especially family people, who don't like my kids for no good reason other than they don't like them. He was a sick man both physically and mentally. I don't have many memories of him but the ones I do have aren't the best. I feel bad for him and I hope he found peace with God before he died. I really, honestly, don't know if he did.
It was hard at the funeral hearing them talk about how kind he was to his grandkids. He sure wasn't nice to my kids. He blamed them for all kinds of things and was kinda mean to them. Of course, Mom said he was abusive to me too, so it's just a continuation of the story, I guess. I suppose the grandkids he was nice to are the ones his second family of kids had. They were probably perfect just like his girls were. They couldn't do anything wrong in his eyes. Of course, he raised them. He wasn't around us much and once the divorce went through I only saw him one other time until I was 18. He'd write, I heard, but Mom, bless her heart, burned the letters and kept the child support checks when he bothered to send one.
Oh well, enough of that. He's gone now. I hope he found peace.
I've been struggling with my weight - still - like I have my whole life. It's a constant battle. I eat, and then I feel bad, so I criticize myself, and then I feel bad, so I eat. See a pattern here? Yeah, me too. It's been that way as long as I can remember - as far back as kindergarten, even. It got worse when my stepdad messed with me, jerk that he was....there are enough willing women in the world....why do some pervs have to mess up the lives and minds of poor little girls who are all innocent and stuff? They should be castrated. Seriously. Cut their parts off and let them pee through a suprapubic catheter for the rest of their lives. It's almost comparable to the crap we go through hating ourselves and thinking we were the ones who asked for Daddy dearest to grope us, or worse....and then we have eating disorders, struggle to make friends and trust people, and are basically screwed up until we either get intensive counseling, learn to live with it, or die....
Yeah. I'm a bit introspective today. Yanno what though? This is probably good. I need to get the junk out of my brain so I can acknowledge it and stop pretending everything was fine and it's my fault I'm 100 pounds overweight. Because it's not my fault. I was molested and beaten and psychologically abused and neglected, and I covered my tender, scared, vulnerable little girl with fat to protect her since the people in my life who should have done that didn't do it. I had to do something. And now, 45+ years later, I struggle with trying to unlearn this coping mechanism, and every time I get kinda going on it, something else comes up, and the mechanism kicks back into high gear and I'm at it again.
I wanna do so many things and I struggle still with the judgmental voices telling me I'm not going to succeed; I'm not going to do it right; I should have done it earlier; I should have done something else; I'm aiming too high or not high enough; those voices get so firmly ingrained in your psyche it's almost impossible to get them to shut up. I'm not saying it can't be done. What I'm saying is that it's really hard and you need lots of support and a cheering section, and my small cheering section and sometimes not so strong support people struggle right now to get from day to day, so that....well, it ain't going all that well, okay? I'm lucky sometimes to get from morning till night without wanting to just give up.
But I can't give up. God won't let me. He loves me, and He hangs on to me even when my hand goes all floppy-like and I'm dragging my feet and bawling and whining and having one big fat grand pity party, and He sits down and holds out his hands and then He hugs me and lets me cry and He comforts me and tells me it'll be okay, that He's not gonna judge me because I'm overweight or because I take narcotics for pain or because I only have 11 teeth or because of my thinning hair or because I pick at my sores....or because my youngest daughter won't let me see her kids, or because we can't afford to go on a vacation and I really, really, really need one...He loves me anyhow. He's gonna be here no matter what happens or who craps on me or what breaks or how rotten I feel. He's right here next to me no matter what. And He tells me I'm not a loser and I'm not ugly and I'm not useless or worthless, and it gets into the cracks in my lumpy, glued up heart, and I know for a minute or two again that I'm gonna make it, and I'm strengthened enough to go on and tackle the next battle.
I'm going to write my book and I'm going to have it published and someone is going to read it and be helped.....inspired.....motivated.....encouraged.....strengthened.....and they'll be able to go on for another day because I shared my story. It's going to happen. I'm not giving up. I will succeed.
God bless us all, and hug us in His arms, and love us just because we're His.
Amen.
Thursday, February 16, 2012
Losing my teeth
Between the gastric bypass surgery I had in 2003, the meds I'm taking that give me horrid dry mouth, my sleep apnea, and the fact that I'm a long-time mouth breather, my teeth are really starting to fall apart in my mouth. I bit down on a piece yesterday morning that broke off the back right upper molar that is falling apart at this time. I think most of what is left of that tooth is the filling. There's not much at all left of the teeth on the right side of my mouth, upper or lower, past the pre-molars. They've all broken off or been pulled. On the left it's a bit better, but not by much. I have one that had to be pulled, and I have one that is split but still all in my mouth. I feel it wiggling if I bite down just so or if I eat the wrong thing. I'm just waiting for it to fall out.
I see a dentist in St. Louis on February 27th to talk to him about IV sedation surgery to extract all my teeth and put in dentures. It's the only reasonable thing to do. I'm at risk for infection now; my teeth look awful and my breath stinks. It's not healthy and it looks and feels awful. I'm hoping it won't be long before it's done. I hate how it feels. We want to sell and move away from here but we can't do anything until the teeth are done because we need hubby's insurance to get them done. We sure can't afford to do it otherwise. Hopefully we can get it set up, they can do my impressions, and we can get this over with so I can get on with my life not feeling too self-conscious to smile because of my broken and rotting teeth.
I'm struggling this week with fatigue and not having the energy to exercise in spite of the fact that I know I need it. I just don't have any energy. It's pretty frustrating.
I don't want to be sick any more. I'm done.
I see a dentist in St. Louis on February 27th to talk to him about IV sedation surgery to extract all my teeth and put in dentures. It's the only reasonable thing to do. I'm at risk for infection now; my teeth look awful and my breath stinks. It's not healthy and it looks and feels awful. I'm hoping it won't be long before it's done. I hate how it feels. We want to sell and move away from here but we can't do anything until the teeth are done because we need hubby's insurance to get them done. We sure can't afford to do it otherwise. Hopefully we can get it set up, they can do my impressions, and we can get this over with so I can get on with my life not feeling too self-conscious to smile because of my broken and rotting teeth.
I'm struggling this week with fatigue and not having the energy to exercise in spite of the fact that I know I need it. I just don't have any energy. It's pretty frustrating.
I don't want to be sick any more. I'm done.
Wednesday, February 08, 2012
Wednesday morning - day 2314
I have an interesting feeling this morning. It's like I can feel my hair coming out of my head. I don't know if that describes it correctly, but it feels literally like I am aware of each hair coming out of my scalp. It doesn't hurt - yet. It's rather a sensation I'm not familiar with; something new I'm not comfortable experiencing yet. It's probably just another manifestation of the nerve issues I'm so familiar with now.
On the 27th I see the dentist. This one does general anesthesia. I'm looking to get all my teeth pulled and have a full set of dentures. I have so many cavities it's awful and I can't tolerate the vibrating sensation of a rotating toothbrush. The meds I'm on cause extreme dry mouth, I'm a mouth breather by nature; and, combined with everything else, this has led to my teeth starting to break, chip and fall apart. The only solution other than paying for general anesthesia every 6 months or more often to get them cleaned and cared for once hubby retires next year is to have a mass extraction and have a set of dentures placed. I have to be realistic....we're not going to have the money to do that. I know keeping my own teeth is best but over half of the ones in my mouth need work, many of them major work, and it's not going to get any better. I might as well face it now and get it done while we still have insurance.
I'm dealing with some emotional stuff lately. Every once in a while things from the past come to the surface and I process them to the best of my ability. I think it only happens a bit at a time because I couldn't handle facing it all at once. There's just too much there to deal with in one lump. God is gracious that way - He gives me only what I can handle with His help. It's always been that way. He's always taken care of me. Even in the scary times He was there and he stayed my molester's hand when a certain point was reached....not that there wasn't damage done, but He only allowed so much and then He stopped the enemy from trying to destroy me. I am so grateful for His love and protection....there's no way to put it into words. I don't know what I'd do without Him.
I've gained back most of the weight I lost after my surgery. It's very discouraging. Between the meds, the forced reduction in activity due to intolerance, and stress, I just keep losing the fight with the food monster. It's hard not to eat bad stuff when I've coped this way all my life. It's not like drugs or booze where you can just stay away. You have to eat. And, once I start, it's hard for me to stop. It is my major coping mechanism. With all that's going on in the family, it's really hard for me to eat the right stuff. I guess I need to spend more time in prayer and on my face before God; I know if I can get past my fears and learned behaviors, and if I can trust in Him, I can take this weight back off. We did it together before, and we can do it again. I just need to remind myself of that.
On the 27th I see the dentist. This one does general anesthesia. I'm looking to get all my teeth pulled and have a full set of dentures. I have so many cavities it's awful and I can't tolerate the vibrating sensation of a rotating toothbrush. The meds I'm on cause extreme dry mouth, I'm a mouth breather by nature; and, combined with everything else, this has led to my teeth starting to break, chip and fall apart. The only solution other than paying for general anesthesia every 6 months or more often to get them cleaned and cared for once hubby retires next year is to have a mass extraction and have a set of dentures placed. I have to be realistic....we're not going to have the money to do that. I know keeping my own teeth is best but over half of the ones in my mouth need work, many of them major work, and it's not going to get any better. I might as well face it now and get it done while we still have insurance.
I'm dealing with some emotional stuff lately. Every once in a while things from the past come to the surface and I process them to the best of my ability. I think it only happens a bit at a time because I couldn't handle facing it all at once. There's just too much there to deal with in one lump. God is gracious that way - He gives me only what I can handle with His help. It's always been that way. He's always taken care of me. Even in the scary times He was there and he stayed my molester's hand when a certain point was reached....not that there wasn't damage done, but He only allowed so much and then He stopped the enemy from trying to destroy me. I am so grateful for His love and protection....there's no way to put it into words. I don't know what I'd do without Him.
I've gained back most of the weight I lost after my surgery. It's very discouraging. Between the meds, the forced reduction in activity due to intolerance, and stress, I just keep losing the fight with the food monster. It's hard not to eat bad stuff when I've coped this way all my life. It's not like drugs or booze where you can just stay away. You have to eat. And, once I start, it's hard for me to stop. It is my major coping mechanism. With all that's going on in the family, it's really hard for me to eat the right stuff. I guess I need to spend more time in prayer and on my face before God; I know if I can get past my fears and learned behaviors, and if I can trust in Him, I can take this weight back off. We did it together before, and we can do it again. I just need to remind myself of that.
Friday, April 22, 2011
Hanging in there - day 2022
Sometimes it just seems like the same drudgery day after day after day.
I still can't sleep in our bed more than an hour or two. I stop breathing and that's just not a good thing. I doubt I've slept in bed more than three times in the last year. I know if I lost some weight I'd be better off, but the stress here has been so incredibly high I've been eating to compensate, which is a learned behavior and coping mechanism, so I've not managed to lose anything lately.
I stopped riding my exercise bike for a while when I was feeling really non-motivated but I started up again so I'm hoping to get back into the groove with that. It makes me feel better and I don't get that couch potato sensation as much as when I'm just hanging out watching TV and web-surfing.
I'm glad it's coming up on spring. This was a bad winter for depression symptoms. I don't sleep in bed but when I sit down for more than a few minutes I doze off, whether here in my recliner or on the couch or even, this year for the first time, at the sewing machine. That was kinda weird.
I am so glad God is in my life. He is my strength, my all-sufficiency, my All in All, my healer and deliverer. I will look to Him and not to the physical manifestations. I will focus on His grace and mercy and not on my own human shortcomings.
I would be lost without Him. I am grateful for the Cross and redemption and the resurrection power of Jesus Christ. Without the Blood, I would have no hope. I hope you can find this too.
I still can't sleep in our bed more than an hour or two. I stop breathing and that's just not a good thing. I doubt I've slept in bed more than three times in the last year. I know if I lost some weight I'd be better off, but the stress here has been so incredibly high I've been eating to compensate, which is a learned behavior and coping mechanism, so I've not managed to lose anything lately.
I stopped riding my exercise bike for a while when I was feeling really non-motivated but I started up again so I'm hoping to get back into the groove with that. It makes me feel better and I don't get that couch potato sensation as much as when I'm just hanging out watching TV and web-surfing.
I'm glad it's coming up on spring. This was a bad winter for depression symptoms. I don't sleep in bed but when I sit down for more than a few minutes I doze off, whether here in my recliner or on the couch or even, this year for the first time, at the sewing machine. That was kinda weird.
I am so glad God is in my life. He is my strength, my all-sufficiency, my All in All, my healer and deliverer. I will look to Him and not to the physical manifestations. I will focus on His grace and mercy and not on my own human shortcomings.
I would be lost without Him. I am grateful for the Cross and redemption and the resurrection power of Jesus Christ. Without the Blood, I would have no hope. I hope you can find this too.
Saturday, December 11, 2010
man, it's been a while
I forget to write in here and my other blog. My brain isn't what it used to be. I forget lots of things. I make lists and lose them. Now that's scary.
Okay, update....forget weaning off the Methadone. The Nurse Practitioner says as long as I'm only taking 0.25 of the Xanax they can leave me on 40mg of Methadone. Hallelujah! Though lately it's certainly not pulling its weight like before, I'm still very thankful for the relief I do get. I fully realize that the docs don't have to give me such powerful drugs even though I am in life-altering pain. I'm grateful I found a pain doc who isn't opposed to the use of narcotics for pain management when it's necessary.
I've been feeling so icky lately I kinda slacked off on the exercise. Now I have this wonderful cold that's moving down into my chest and if I got on my bike I'd be hacking my lungs half out. I think I'll make myself get on there tomorrow though and do half an hour anyhow, even if I do it on the lowest setting and don't last the hour I usually do. Anything is better than nothing, eh?
I know this is discombobulated. I just don't have the ability to focus very much right now. My pain level is going up and I'm gonna have to go pop a Vicodin again before it gets out of control.
Thanks to everyone who reads and leaves supportive notes. I pray you have a nice holiday season.(did that sound PC enough?)
Merry Christmas and God bless you all. I appreciate you. You're in my prayers.
Okay, update....forget weaning off the Methadone. The Nurse Practitioner says as long as I'm only taking 0.25 of the Xanax they can leave me on 40mg of Methadone. Hallelujah! Though lately it's certainly not pulling its weight like before, I'm still very thankful for the relief I do get. I fully realize that the docs don't have to give me such powerful drugs even though I am in life-altering pain. I'm grateful I found a pain doc who isn't opposed to the use of narcotics for pain management when it's necessary.
I've been feeling so icky lately I kinda slacked off on the exercise. Now I have this wonderful cold that's moving down into my chest and if I got on my bike I'd be hacking my lungs half out. I think I'll make myself get on there tomorrow though and do half an hour anyhow, even if I do it on the lowest setting and don't last the hour I usually do. Anything is better than nothing, eh?
I know this is discombobulated. I just don't have the ability to focus very much right now. My pain level is going up and I'm gonna have to go pop a Vicodin again before it gets out of control.
Thanks to everyone who reads and leaves supportive notes. I pray you have a nice holiday season.(did that sound PC enough?)
Merry Christmas and God bless you all. I appreciate you. You're in my prayers.
Friday, August 27, 2010
Day 1791 - Oh, help.
When it rains, it pours.
So the pain doc wants me to wean off the Methadone eventually. I'm not sure what he wants me to take, since there isn't much else I can take in a realistic sense; anyhow, I've been half-heartedly looking for another pain management group in the hopes they will help me get control of the pain without insisting I increase my stress level, and thereby my pain level, by suggesting from the get-go that I consider how I want to wean off the drugs that enable me to function on a daily basis as at least a minimally contributing member of society.
Now, my mom has decided I am: 1) Addicted to my prescription meds. This is, in her eyes, happening in spite of the fact that I am monitored by my pain med doc, my psychiatrist, and a neurologist in addition to my primary doc. It's amazing that none of these physicians, who see me a heck of a lot more often than she does, haven't noticed this so-called addiction....2) Lazy and need to go back to work in addition to getting out and walking like she does to get some exercise. Never mind that I have a bad knee and have been told that walking or other weight-bearing exercises, for the time being, will only hasten the eventual necessity of a knee replacement. Add to this that there are very, very few people I know of who want a nurse on Methadone to control pain, one who nods off from the narcotic dose required to keep the pain manageable, to take care of themselves or their family members...3) Hubby and I are, in her words, perverted and sick. My sister, whose own life is a mess on good days, told mom hubby and I are into S&M which, though it would be none of their business if it were true, is a blatant lie. I don't have a masochistic bone in my body. I don't like pain. It hurts. However, she believed said sister, and proceeded to write me a letter telling me I'm fat, lazy, addicted, perverted and sick. Nice, loving mother, huh? Anybody want her?
About the knee...several weeks back I did something to it. I can't remember what, or when, but it probably had to do with chickens, since that is where I get most of my activity. Anyhow, I finally got off my butt and called the orthopedist last week. I saw him Tuesday. They did the perfunctory X-rays. He saw them, and then we all saw them. The left knee is on its way out. It's not going today, or tomorrow, but it's not going to last forever. Most of it is probably a combination of working on my feet for 15 years as a nurse and being obese. I will accept that. I'm not gonna hide it. Interestingly enough I had planned on starting Weight Watchers again with Abby this week; the orthopedist was happy to hear that. In addition, I had been considering a recumbent bike or one of those foot pedaling things, largely because between my environmental allergies and my pain, I don't do well with outside exercise. I either hurt, break out, or both. Indoor, non-weight-bearing exercise seems the best way to go.
He numbed my knee with the funny spray freezy stuff and an OUCH of Lidocaine and then drained about 50cc of fluid off said knee and injected some cortisone to help with the inflammation, all after managing to convince me that it wasn't going to hurt as much as cortisone injections into soft tissue do. I have a friend who has those kinds of injections and she locks up and is in horrid pain for a few days after her shots. I didn't want anything to do with that. Oh and by the way - he did a great job. He is a good shot and didn't lie to me, which I really appreciate. He says we can do those until they don't work, and then we can inject fluid of a lubricant style into the capsule to help movement after that, and then, in the future, we'll look at surgical management. This is my kind of doctor.
I talked it over with hubby and ordered a Schwinn recumbent bike this week. Once it's here, I'll be building a close relationship with it. It will help me lose weight, help my activity tolerance, and it will lengthen the amount of time I can wait before needing to undergo the knife again. I mean, it's only been 7 weeks since I had my right hand carpal tunnel surgery done; the left wrist and elbow (it was more involved than the right side) was done in November of last year. I'm starting to feel like a guinea pig. At least these scars aren't from self-mutilation, eh?
So, I have a sister or two that are upset that I hung up on them - my younger when she tried to tell me that I need to let my mom do what she wants to in my house, to which I said, "It's my house, and she plays by my rules or doesn't play. I'm not her patsy any more and she's not going to intimidate me or make me feel guilty any more." (Okay, so we're still working on that) My older sister - well, I hung up on her after she lied to me when I asked her if she knew what was up with Mom and then called me back several hours later to tell me she had told Mom hubby and I are supposedly into S&M. Now this sister has been married 3 times, she cheated on her first two husbands and then married someone who verbally abuses her and has cheated on her in addition to getting fired from a fantastic job at Disney because the person he was cheating with was his boss' wife...and she has a right to judge me?
NOT.
Okay. So there we are. Bum left knee, maybe bum right knee as well - we just haven't looked at that one yet. Pain doc I'm not thrilled with because he seems to be hell-bound to get me off my pain medication and onto, what, short acting narcotics? He wants me to wean off the Methadone and, according to the research, there is "a chance" once I go back on it I won't need as much, if I need any at all. Okay. So what do I take in the meantime....or do I just get nothing, and go back to being in so much pain it's almost not worth living? I get the feeling he thinks I don't need this medication or he's getting pressure from the DEA, which wouldn't be a surprise since they seem to delight in tormenting physicians who actually act in their patient's behalf and give them adequate medication for chronic pain...and there is a big part of the problem. Many people in the medical community pooh-pooh those with chronic pain, even claiming that we don't need the meds that keep us going day to day. Just because you can't see or put your finger on the cause of my pain doesn't mean it isn't there. It just means it's invisible. It's still pain. It still hurts. It still interferes with my life. I still get judged, even by my own family members. And, I deal daily with the knowledge that I cannot work outside the home, which means even those of us with degrees and training end up in pain. Even those who aren't addicts or uneducated or what have you end up in pain, the kind of pain that leaves you begging God to take you home. Yeah, it hurts like hell. And to have people negate or minimize that pain hurts like hell, too, because it invalidates what we feel and experience, and what many of us struggled to hide because we knew what we were going to face when we revealed that we were taking narcotics to control our pain. I'm not the only one whose family members have decided that there is an addiction problem when the meds are being taken for a chronic pain issue. People tend to disbelieve what they can't see. If I was missing a leg, or two, would it make my pain medication prescription more justified? Why? Is the pain my nerves shoot across my face and into my eye socket like an ice pick heading for my brain any less valid than pain from an amputation?
Sorry for the rambling. I'm a bit muddled these days.
So the pain doc wants me to wean off the Methadone eventually. I'm not sure what he wants me to take, since there isn't much else I can take in a realistic sense; anyhow, I've been half-heartedly looking for another pain management group in the hopes they will help me get control of the pain without insisting I increase my stress level, and thereby my pain level, by suggesting from the get-go that I consider how I want to wean off the drugs that enable me to function on a daily basis as at least a minimally contributing member of society.
Now, my mom has decided I am: 1) Addicted to my prescription meds. This is, in her eyes, happening in spite of the fact that I am monitored by my pain med doc, my psychiatrist, and a neurologist in addition to my primary doc. It's amazing that none of these physicians, who see me a heck of a lot more often than she does, haven't noticed this so-called addiction....2) Lazy and need to go back to work in addition to getting out and walking like she does to get some exercise. Never mind that I have a bad knee and have been told that walking or other weight-bearing exercises, for the time being, will only hasten the eventual necessity of a knee replacement. Add to this that there are very, very few people I know of who want a nurse on Methadone to control pain, one who nods off from the narcotic dose required to keep the pain manageable, to take care of themselves or their family members...3) Hubby and I are, in her words, perverted and sick. My sister, whose own life is a mess on good days, told mom hubby and I are into S&M which, though it would be none of their business if it were true, is a blatant lie. I don't have a masochistic bone in my body. I don't like pain. It hurts. However, she believed said sister, and proceeded to write me a letter telling me I'm fat, lazy, addicted, perverted and sick. Nice, loving mother, huh? Anybody want her?
About the knee...several weeks back I did something to it. I can't remember what, or when, but it probably had to do with chickens, since that is where I get most of my activity. Anyhow, I finally got off my butt and called the orthopedist last week. I saw him Tuesday. They did the perfunctory X-rays. He saw them, and then we all saw them. The left knee is on its way out. It's not going today, or tomorrow, but it's not going to last forever. Most of it is probably a combination of working on my feet for 15 years as a nurse and being obese. I will accept that. I'm not gonna hide it. Interestingly enough I had planned on starting Weight Watchers again with Abby this week; the orthopedist was happy to hear that. In addition, I had been considering a recumbent bike or one of those foot pedaling things, largely because between my environmental allergies and my pain, I don't do well with outside exercise. I either hurt, break out, or both. Indoor, non-weight-bearing exercise seems the best way to go.
He numbed my knee with the funny spray freezy stuff and an OUCH of Lidocaine and then drained about 50cc of fluid off said knee and injected some cortisone to help with the inflammation, all after managing to convince me that it wasn't going to hurt as much as cortisone injections into soft tissue do. I have a friend who has those kinds of injections and she locks up and is in horrid pain for a few days after her shots. I didn't want anything to do with that. Oh and by the way - he did a great job. He is a good shot and didn't lie to me, which I really appreciate. He says we can do those until they don't work, and then we can inject fluid of a lubricant style into the capsule to help movement after that, and then, in the future, we'll look at surgical management. This is my kind of doctor.
I talked it over with hubby and ordered a Schwinn recumbent bike this week. Once it's here, I'll be building a close relationship with it. It will help me lose weight, help my activity tolerance, and it will lengthen the amount of time I can wait before needing to undergo the knife again. I mean, it's only been 7 weeks since I had my right hand carpal tunnel surgery done; the left wrist and elbow (it was more involved than the right side) was done in November of last year. I'm starting to feel like a guinea pig. At least these scars aren't from self-mutilation, eh?
So, I have a sister or two that are upset that I hung up on them - my younger when she tried to tell me that I need to let my mom do what she wants to in my house, to which I said, "It's my house, and she plays by my rules or doesn't play. I'm not her patsy any more and she's not going to intimidate me or make me feel guilty any more." (Okay, so we're still working on that) My older sister - well, I hung up on her after she lied to me when I asked her if she knew what was up with Mom and then called me back several hours later to tell me she had told Mom hubby and I are supposedly into S&M. Now this sister has been married 3 times, she cheated on her first two husbands and then married someone who verbally abuses her and has cheated on her in addition to getting fired from a fantastic job at Disney because the person he was cheating with was his boss' wife...and she has a right to judge me?
NOT.
Okay. So there we are. Bum left knee, maybe bum right knee as well - we just haven't looked at that one yet. Pain doc I'm not thrilled with because he seems to be hell-bound to get me off my pain medication and onto, what, short acting narcotics? He wants me to wean off the Methadone and, according to the research, there is "a chance" once I go back on it I won't need as much, if I need any at all. Okay. So what do I take in the meantime....or do I just get nothing, and go back to being in so much pain it's almost not worth living? I get the feeling he thinks I don't need this medication or he's getting pressure from the DEA, which wouldn't be a surprise since they seem to delight in tormenting physicians who actually act in their patient's behalf and give them adequate medication for chronic pain...and there is a big part of the problem. Many people in the medical community pooh-pooh those with chronic pain, even claiming that we don't need the meds that keep us going day to day. Just because you can't see or put your finger on the cause of my pain doesn't mean it isn't there. It just means it's invisible. It's still pain. It still hurts. It still interferes with my life. I still get judged, even by my own family members. And, I deal daily with the knowledge that I cannot work outside the home, which means even those of us with degrees and training end up in pain. Even those who aren't addicts or uneducated or what have you end up in pain, the kind of pain that leaves you begging God to take you home. Yeah, it hurts like hell. And to have people negate or minimize that pain hurts like hell, too, because it invalidates what we feel and experience, and what many of us struggled to hide because we knew what we were going to face when we revealed that we were taking narcotics to control our pain. I'm not the only one whose family members have decided that there is an addiction problem when the meds are being taken for a chronic pain issue. People tend to disbelieve what they can't see. If I was missing a leg, or two, would it make my pain medication prescription more justified? Why? Is the pain my nerves shoot across my face and into my eye socket like an ice pick heading for my brain any less valid than pain from an amputation?
Sorry for the rambling. I'm a bit muddled these days.
Saturday, July 03, 2010
not so bad....
I get horribly introspective now and then, and my last post was reflective of that. It's rough, but I managed to pull myself up and remind myself how blessed I really am. Once in a while, though, it's good to be brutally honest even if it hurts. It's far better than hiding it way back inside somewhere and letting it fester. It is part of my mental health status that this happens, and I have learned that denying it doesn't change its existence. Many people are taken aback or shocked when they see that I can get that way. I live with it; it doesn't surprise me any more.
I was scheduled for a sleep study last night. Apparently they use some nasty scented dryer sheets on the bed linens and after about half an hour in the room, waiting on the nurse to come and hook me up to the plethora of wires that are required for such a techno-savvy test, I was about to wilt into a puddle of upchuck. I turned everything off and left the room. As I made my way down the hallway she came up and asked if I was okay. I explained what was going on and we agreed my only alternative was to leave. We had already been questioning the wisdom of sticking so many patches to someone allergic to adhesive and latex and everything else I don't tolerate. I guess it was decided for us, no?
I've managed to stay eating very well since I got sick last weekend. I believe I've lost an inch off my waist already. I feel looser in my clothes, if that makes sense. It's a nice feeling not to have the fabrics snug on your body, but instead to have to reach down and tug up a skirt or a pair of pettipants once in a while. I'm certainly not going to complain. I can always make more if I need to.
I'm sticking with several small meals, very little bread or other carbs from processed grain, and more protein and fresh stuff. I've had cantaloupe, strawberries, yogurt, mesquite turkey breast, cheese, some whole grain crackers, nuts (mostly raw ones, thank you Target), and jello. Last night we had some of the Breyer's low carb ice cream bars with almond pieces in the chocolate.....oh, they sure don't taste low carb, but they are pretty much the only chocolate I can eat without paying for it later. I have cut my diet soda intake in half by making sure that every other thing I drink is either sugar free koolaid, gatorade if I'm feeling like I need to replace electrolytes, or the like.
God is good. He is with me and He holds me up when I falter, patiently loving me back to sensibility. And because of that, I am blessed.
I was scheduled for a sleep study last night. Apparently they use some nasty scented dryer sheets on the bed linens and after about half an hour in the room, waiting on the nurse to come and hook me up to the plethora of wires that are required for such a techno-savvy test, I was about to wilt into a puddle of upchuck. I turned everything off and left the room. As I made my way down the hallway she came up and asked if I was okay. I explained what was going on and we agreed my only alternative was to leave. We had already been questioning the wisdom of sticking so many patches to someone allergic to adhesive and latex and everything else I don't tolerate. I guess it was decided for us, no?
I've managed to stay eating very well since I got sick last weekend. I believe I've lost an inch off my waist already. I feel looser in my clothes, if that makes sense. It's a nice feeling not to have the fabrics snug on your body, but instead to have to reach down and tug up a skirt or a pair of pettipants once in a while. I'm certainly not going to complain. I can always make more if I need to.
I'm sticking with several small meals, very little bread or other carbs from processed grain, and more protein and fresh stuff. I've had cantaloupe, strawberries, yogurt, mesquite turkey breast, cheese, some whole grain crackers, nuts (mostly raw ones, thank you Target), and jello. Last night we had some of the Breyer's low carb ice cream bars with almond pieces in the chocolate.....oh, they sure don't taste low carb, but they are pretty much the only chocolate I can eat without paying for it later. I have cut my diet soda intake in half by making sure that every other thing I drink is either sugar free koolaid, gatorade if I'm feeling like I need to replace electrolytes, or the like.
God is good. He is with me and He holds me up when I falter, patiently loving me back to sensibility. And because of that, I am blessed.
Sunday, June 27, 2010
Day 1729 - 3am and still awake
God, I need some peace. Please.
I'm stressing out here. The thought of losing my pain meds is making me hurt more. The necessity of decreasing the anxiety med certainly isn't helping. If I weren't so sensitive to medications, I could just jump into another category of meds or something and maybe that would help. However, I am severely limited, and therein lies the problem.
I need, for relief of my pain and anxiety, a combination of medications that has the potential of being a not-so-healthy combination. In fact, benzodiazepines and Methadone have the potential for making the partaker, well, dead. Never mind that I have been taking this particular set of meds for 4 years without obvious consequence. My pain doc will no longer allow me to combine them in the dosage that works for me when it comes to both pain relief and the ability to sleep, as you can tell by my still being awake at 3am.
Okay. For some reason the "enter" key no longer precipitates a line break. Hm. I wonder if this is a new tweak that Blogger has added to assist me in pulling my hair out.
Anyhow, so I stopped the nighttime dose of Xanax that was helping me enter dreamland without a long and arduous fight, and, as anticipated, sleep is now way overdue and longed for. It's not just the lack of sleep that the med affects...it's also the anxiety I've lived with since who knows when and no longer have the ability to hide at the level I could attain before.
I know in my heart that God is the Author of peace and that He is my sufficiency; my All in All; that He is my hiding place, my refuge in times of trouble. The struggle lies in the part of me that is still so very human - the part of my being that used to dread bedtime because of the monster that crept into my bedroom and put his hands where no male caretaker should ever touch a child...and yes, I've heard and been taught and read and had preached to me that God can take those memories away, but in His great wisdom He has chosen to allow me to retain them, partly in order to garner compassion and understanding and the ability to identify with the abused, the molested....and I struggle with this every day to one degree or another. The tweaking of the meds and the pain doc's desire to wean me off my pain meds triggers my abandonment issues. It also strikes at the fear of mismanaged power that I can hold at bay most of the time; it is not so easy when the issue is my well-being and ability to function as a rational member of the human race.
I am struggling, also, with a deep sense of melancholy and loss....the loss of opportunity that I perpetuated when I decided to marry an abusive man and create three lives that, along with my own, pay for that decision every day. I love my children deeply, yet it tears at my heart to watch them struggle, knowing that part of that struggle was my choice for their father. I realize that the concept of free choice is an integral part of becoming part of the family of God, yet, hindsight being 20/20, I also see from where I am seated that the result of my maternal grandparents' abuse of my mother led, consequentially, to their struggle as well.
What a conundrum. What a revelation. What a discovery of the absolute necessity of the saving grace of a loving and forgiving God, the Father that so many of us never had. Without Him I would have no hope, no reason to go on. I could so easily sink into the melancholy and let it swallow me alive, becoming lost in the hopelessness the evil one holds out temptingly if, for one moment, I turn my eyes away from my God, my Savior, my Hope and Salvation....I am achingly aware of the despair that drives some to suicide. I am, however, also acutely alert to the abhorrence that would be to the One Who, through His Son, closed the gap between a race of hopelessly lost mankind and His eternal rest.
Ah, my philosophizing brings out my vocabulary. There really isn't much need for it here with the cats and chickens, and my sweet hubby hasn't the education I have, so we speak much more simply with each other. Not that he isn't bright or gifted....it's just not in the same areas I am. Isn't it funny how God does that, pairing us with those who remind us that ours is not the only perspective of and on the planet? He is indeed a Great God, full of wisdom and patience, lovingly encouraging us to try again and again when we stumble and fall on our backsides, forgetting in our great rush to go somewhere, anywhere, that we must walk before we can run.......
In spite of the pain, the insomnia, the anxiety, the depression, the anger, the sadness, the hesitation....God is God and He will do what is best for me, in spite of my best efforts to mess it all up.
And for that, I am grateful. Without the pain, or the other associated issues, what, then, would be my need for a Great God? If I did have it all under control, why would I require the Master of All to intervene in my life? What would be the reason for His healing touch if none were ill, or feeble? Why would He demonstrate His redemptive powers if not for those wallowing in the filth of sin?
I will, therefore, trust Him. He knows what is best for me, and He will lead me through this just like He has led me through all the other trials in my life. It may not be easy, or fun, but I will not have to walk it alone, and I will reach the other side as long as I keep my eyes on Him and not the chaos around me...and here is my struggle....and my hope.
I'm stressing out here. The thought of losing my pain meds is making me hurt more. The necessity of decreasing the anxiety med certainly isn't helping. If I weren't so sensitive to medications, I could just jump into another category of meds or something and maybe that would help. However, I am severely limited, and therein lies the problem.
I need, for relief of my pain and anxiety, a combination of medications that has the potential of being a not-so-healthy combination. In fact, benzodiazepines and Methadone have the potential for making the partaker, well, dead. Never mind that I have been taking this particular set of meds for 4 years without obvious consequence. My pain doc will no longer allow me to combine them in the dosage that works for me when it comes to both pain relief and the ability to sleep, as you can tell by my still being awake at 3am.
Okay. For some reason the "enter" key no longer precipitates a line break. Hm. I wonder if this is a new tweak that Blogger has added to assist me in pulling my hair out.
Anyhow, so I stopped the nighttime dose of Xanax that was helping me enter dreamland without a long and arduous fight, and, as anticipated, sleep is now way overdue and longed for. It's not just the lack of sleep that the med affects...it's also the anxiety I've lived with since who knows when and no longer have the ability to hide at the level I could attain before.
I know in my heart that God is the Author of peace and that He is my sufficiency; my All in All; that He is my hiding place, my refuge in times of trouble. The struggle lies in the part of me that is still so very human - the part of my being that used to dread bedtime because of the monster that crept into my bedroom and put his hands where no male caretaker should ever touch a child...and yes, I've heard and been taught and read and had preached to me that God can take those memories away, but in His great wisdom He has chosen to allow me to retain them, partly in order to garner compassion and understanding and the ability to identify with the abused, the molested....and I struggle with this every day to one degree or another. The tweaking of the meds and the pain doc's desire to wean me off my pain meds triggers my abandonment issues. It also strikes at the fear of mismanaged power that I can hold at bay most of the time; it is not so easy when the issue is my well-being and ability to function as a rational member of the human race.
I am struggling, also, with a deep sense of melancholy and loss....the loss of opportunity that I perpetuated when I decided to marry an abusive man and create three lives that, along with my own, pay for that decision every day. I love my children deeply, yet it tears at my heart to watch them struggle, knowing that part of that struggle was my choice for their father. I realize that the concept of free choice is an integral part of becoming part of the family of God, yet, hindsight being 20/20, I also see from where I am seated that the result of my maternal grandparents' abuse of my mother led, consequentially, to their struggle as well.
What a conundrum. What a revelation. What a discovery of the absolute necessity of the saving grace of a loving and forgiving God, the Father that so many of us never had. Without Him I would have no hope, no reason to go on. I could so easily sink into the melancholy and let it swallow me alive, becoming lost in the hopelessness the evil one holds out temptingly if, for one moment, I turn my eyes away from my God, my Savior, my Hope and Salvation....I am achingly aware of the despair that drives some to suicide. I am, however, also acutely alert to the abhorrence that would be to the One Who, through His Son, closed the gap between a race of hopelessly lost mankind and His eternal rest.
Ah, my philosophizing brings out my vocabulary. There really isn't much need for it here with the cats and chickens, and my sweet hubby hasn't the education I have, so we speak much more simply with each other. Not that he isn't bright or gifted....it's just not in the same areas I am. Isn't it funny how God does that, pairing us with those who remind us that ours is not the only perspective of and on the planet? He is indeed a Great God, full of wisdom and patience, lovingly encouraging us to try again and again when we stumble and fall on our backsides, forgetting in our great rush to go somewhere, anywhere, that we must walk before we can run.......
In spite of the pain, the insomnia, the anxiety, the depression, the anger, the sadness, the hesitation....God is God and He will do what is best for me, in spite of my best efforts to mess it all up.
And for that, I am grateful. Without the pain, or the other associated issues, what, then, would be my need for a Great God? If I did have it all under control, why would I require the Master of All to intervene in my life? What would be the reason for His healing touch if none were ill, or feeble? Why would He demonstrate His redemptive powers if not for those wallowing in the filth of sin?
I will, therefore, trust Him. He knows what is best for me, and He will lead me through this just like He has led me through all the other trials in my life. It may not be easy, or fun, but I will not have to walk it alone, and I will reach the other side as long as I keep my eyes on Him and not the chaos around me...and here is my struggle....and my hope.
Monday, June 07, 2010
Med changes and side effects
On the 23rd of last month, the pain doc increased my pain meds from 30mg of Methadone a day to 40mg. He was concerned that my increased Vicodin intake might create a tolerance, thereby limiting its effectiveness for breakthrough pain.
I went up to 40mg a day for about a week, and noticed substantial swelling in my feet in addition to a lot of fatigue. I also couldn't drive or, on some days, even focus.
So, a few days ago, I decreased the dose to 35mg a day, divided over 3 doses. I take 10mg at midnight, 15 at 8am, and 10mg at 4pm. The pain has gone up some but the swelling hasn't done much at all. I'm going to give it a few days to see if the edema will lessen; if not, I suppose I'll have to go see my primary doc and maybe she'll give me a script for a diuretic to pull the extra fluid out of my tissues. Of course, I'm not sure if it will help or not...but it is definitely worthwhile thinking it might.
For a couple days there, I had pain at a 4 again. It was nice. I'm just not sure I'm prepared to deal with the swelling that goes with it, and it's not just in my feet. My hands are swollen. My body itself is edematous, in fact. Along with this there is the increasingly aggravated symptoms of carpal tunnel syndrome in my right hand. I do believe I'll be making an appointment with my hand surgeon post haste to have this tingling and general mess taken care of.
I recently had my disability review and they approved me for another 3 years. The first review was supposed to be after one year. My initial application was approved in 2007, so it was only 2 years late. For sure, getting reviewed and re-approved is easier than getting through the initial approval process. I thought that was never going to end. Fortunately, my tenacity comes in handy when needed.
I went up to 40mg a day for about a week, and noticed substantial swelling in my feet in addition to a lot of fatigue. I also couldn't drive or, on some days, even focus.
So, a few days ago, I decreased the dose to 35mg a day, divided over 3 doses. I take 10mg at midnight, 15 at 8am, and 10mg at 4pm. The pain has gone up some but the swelling hasn't done much at all. I'm going to give it a few days to see if the edema will lessen; if not, I suppose I'll have to go see my primary doc and maybe she'll give me a script for a diuretic to pull the extra fluid out of my tissues. Of course, I'm not sure if it will help or not...but it is definitely worthwhile thinking it might.
For a couple days there, I had pain at a 4 again. It was nice. I'm just not sure I'm prepared to deal with the swelling that goes with it, and it's not just in my feet. My hands are swollen. My body itself is edematous, in fact. Along with this there is the increasingly aggravated symptoms of carpal tunnel syndrome in my right hand. I do believe I'll be making an appointment with my hand surgeon post haste to have this tingling and general mess taken care of.
I recently had my disability review and they approved me for another 3 years. The first review was supposed to be after one year. My initial application was approved in 2007, so it was only 2 years late. For sure, getting reviewed and re-approved is easier than getting through the initial approval process. I thought that was never going to end. Fortunately, my tenacity comes in handy when needed.
Monday, May 31, 2010
Trying to lessen the pain
Well, when I went to see the pain doc last week he increased my Methadone to 40mg a day instead of 30mg. Now for me, this is a significant increase. I usually only increase by 5mg at a time. I asked him if I could do 35 instead but he really wanted me to do 40; I started the full 40mg dose on Thursday and have noticed a significant leveling off in the pain. It's not a lot less, but it's better than it was when I had to take the Vicodin almost every day. The pain doc was concerned, and rightfully so, about me building a tolerance to Vicodin since it's my primary breakthrough medication, so he wanted me to be taking enough Methadone that I wouldn't have to take breakthrough meds unless things get really bad.
I've been sleeping more, though still erratically. Oh well - I guess we can't have everything, can we? It's still frustrating as heck to be asleep off and on all the time instead of going to bed like normal people do and sleeping at night/being awake in the daytime. I doze off all the time, which is very frustrating. I should be used to it but I'm not. Maybe now that my pain is better controlled this will help.
I haven't driven since Tuesday. I don't drive for about 2 weeks after a med change. This helps me have time to adjust to the med increase and the accompanying brain fuzziness before I put myself behind the wheel of a car.
I see my psychiatrist and neurologist this coming week. I'm supposed to find out about the sleep study. I also want to talk to my shrink about my increased anxiety. I've been stress eating and I've gained more weight than I am even close to comfortable about. I've been picking more, bleeding more, and fretting more. I've rarely stopped humming for almost a month now. I can't figure that one out. I just hum and hum. Weird......
Hmmmmmmmmmmmmmmmm.....
I've been sleeping more, though still erratically. Oh well - I guess we can't have everything, can we? It's still frustrating as heck to be asleep off and on all the time instead of going to bed like normal people do and sleeping at night/being awake in the daytime. I doze off all the time, which is very frustrating. I should be used to it but I'm not. Maybe now that my pain is better controlled this will help.
I haven't driven since Tuesday. I don't drive for about 2 weeks after a med change. This helps me have time to adjust to the med increase and the accompanying brain fuzziness before I put myself behind the wheel of a car.
I see my psychiatrist and neurologist this coming week. I'm supposed to find out about the sleep study. I also want to talk to my shrink about my increased anxiety. I've been stress eating and I've gained more weight than I am even close to comfortable about. I've been picking more, bleeding more, and fretting more. I've rarely stopped humming for almost a month now. I can't figure that one out. I just hum and hum. Weird......
Hmmmmmmmmmmmmmmmm.....
Friday, May 14, 2010
Ouch.
For probably a week now I've been eating Vicodin/Lortab in addition to my Methadone. There is a nasty pressure behind my eyes and it will not go away. At least the Lortab helps the pain lessen enough to allow me to sleep for a couple hours.
They want to do a sleep study. I'm apprehensive. First off, I'm allergic to adhesive, so if they have to put patches on me, I'm gonna break out. Secondly, I'm a mouth breather. This means the nose things won't work. Next, I'm allergic to latex, so they will have to make provisions for a latex-free testing environment. Then, there's the claustrophobia condition to consider.
If you add this to the fact that I have a constant and unremitting pain to the right side of my face, and then a condition that causes chronic pain to the back area of my head called "occipital neuralgia," there is a pretty good indication that there is no way in Hades or anywhere else that they are going to be able to get one of those tight masks on my face and the back of my head.
Now, if I do end up with a diagnosis of sleep apnea, it will help with my disability continuation; be that as it may, I just don't know how it's going to work out.
Stress-wise, things have been incredible lately. Becky's in-laws moved back into the second trailer on the property across from us. This means more smell, more noise, & more aggravation. These people have poor personal hygiene, are lacking in manners, and have some of the most warped sense of their idea of Christianity I have ever experienced. When Becky ran away they let her stay there, in the same bedroom and bed as Matt, yet insisted to me over and over that there was no way those two were having sex in the bedroom. Mom was adamant that Matt knew the house rules and wouldn't break them. Man, either she was in serious denial or a liar, or both. They also told us that taking Becky into their house instead of telling her to come home and deal with her problems was, "The right thing to do." She lied and told them I was abusive and that I made her move all the furniture when she had to vacuum. At the time, after the tornado ripped the roof off over our heads, all we had in the living room was a rocking chair and a coffee table. They told her I was cruel for making her do chores - their kids didn't have chores, for making her go to school - their kids had been taken out of school for missing too much, and they were being haphazardly home schooled; and, after she asked to get her license so she could get a part time job (something I didn't do for her siblings because Tampa has public transportation and we were in walking distance of more than enough places for a teen to get jobs), I told her she had to get a job. She wanted to come home from school and go to Matt's. I made sure her chores and homework were done first. That's what my Mom did, and what I did for her siblings, and it's what I expected from her. Matt's mom didn't make the kids do anything, and that included getting out of bed to go to school. No chores. No responsibilities.
So Becky got mad because I was concerned about the grandkids living in a potentially dangerous environment and called DFS. This led to her telling me I would never see my grandchildren again. Ironically enough this happened only a year and a half after she finally started talking to us after a 4 1/2 year period of no communication once she left the house here.
This is harder on me than just about any of the other stressors in my life. Living so close, hearing the kids laugh and play, and even seeing them on occasion, yet not being allowed to talk to them or contact them, is about ripping my heart out. I just don't get it.
It's one of the reasons we're looking to move. One of the biggest reasons.
Before we can move, there are a few conditions that need to be met....
I don't know....the whole thing is just.....frustrating, painful, irritating....will it never end?
No wonder my head screams at me.
They want to do a sleep study. I'm apprehensive. First off, I'm allergic to adhesive, so if they have to put patches on me, I'm gonna break out. Secondly, I'm a mouth breather. This means the nose things won't work. Next, I'm allergic to latex, so they will have to make provisions for a latex-free testing environment. Then, there's the claustrophobia condition to consider.
If you add this to the fact that I have a constant and unremitting pain to the right side of my face, and then a condition that causes chronic pain to the back area of my head called "occipital neuralgia," there is a pretty good indication that there is no way in Hades or anywhere else that they are going to be able to get one of those tight masks on my face and the back of my head.
Now, if I do end up with a diagnosis of sleep apnea, it will help with my disability continuation; be that as it may, I just don't know how it's going to work out.
Stress-wise, things have been incredible lately. Becky's in-laws moved back into the second trailer on the property across from us. This means more smell, more noise, & more aggravation. These people have poor personal hygiene, are lacking in manners, and have some of the most warped sense of their idea of Christianity I have ever experienced. When Becky ran away they let her stay there, in the same bedroom and bed as Matt, yet insisted to me over and over that there was no way those two were having sex in the bedroom. Mom was adamant that Matt knew the house rules and wouldn't break them. Man, either she was in serious denial or a liar, or both. They also told us that taking Becky into their house instead of telling her to come home and deal with her problems was, "The right thing to do." She lied and told them I was abusive and that I made her move all the furniture when she had to vacuum. At the time, after the tornado ripped the roof off over our heads, all we had in the living room was a rocking chair and a coffee table. They told her I was cruel for making her do chores - their kids didn't have chores, for making her go to school - their kids had been taken out of school for missing too much, and they were being haphazardly home schooled; and, after she asked to get her license so she could get a part time job (something I didn't do for her siblings because Tampa has public transportation and we were in walking distance of more than enough places for a teen to get jobs), I told her she had to get a job. She wanted to come home from school and go to Matt's. I made sure her chores and homework were done first. That's what my Mom did, and what I did for her siblings, and it's what I expected from her. Matt's mom didn't make the kids do anything, and that included getting out of bed to go to school. No chores. No responsibilities.
So Becky got mad because I was concerned about the grandkids living in a potentially dangerous environment and called DFS. This led to her telling me I would never see my grandchildren again. Ironically enough this happened only a year and a half after she finally started talking to us after a 4 1/2 year period of no communication once she left the house here.
This is harder on me than just about any of the other stressors in my life. Living so close, hearing the kids laugh and play, and even seeing them on occasion, yet not being allowed to talk to them or contact them, is about ripping my heart out. I just don't get it.
It's one of the reasons we're looking to move. One of the biggest reasons.
Before we can move, there are a few conditions that need to be met....
- I need a pain doctor. A pain doctor who will treat me like a real honest-to-God patient with real pain.
- We need land with enough room for my chickens, and a garden, and perhaps maybe even a pond. At least a couple acres. It needs to be more level than where we are now. Hubby's diabetic neuropathy is getting worse and we need property that will be a lot easier for him to care for. If the land is flat enough, I could possibly even do the mowing on the rider mower.
- We need to sell this place for enough to be able to afford to have either no mortgage at all on our new place, which will probably be smaller, or at least a small mortgage of less than $20K. I don't want a huge payment. We're not rich. I'd like him to be able to retire and if we can get a small place on a piece of land that is less than $70K we can live on my disability, his retirement and his Social Security and he won't have to work. He will, however, need to find something to do or I'll go bats. He would, too. He has to be busy.
I don't know....the whole thing is just.....frustrating, painful, irritating....will it never end?
No wonder my head screams at me.
Sunday, March 14, 2010
Applying for disability
I have atypical facial pain, occipital neuralgia, sensitivity to light and sound, migraines, chronic depression, PTSD, OCD and borderline personality disorder. What got my disability granted was my psychiatrist writing a letter to the judge telling him how I met the SS guidelines for granting disability based on depression. I found the guidelines, highlighted them and put them in with my paperwork when I went in for my hearing. The judge saw them and asked me who highlighted it. I told him I did. He said that since those were the Social Security Administration's guidelines, if I had someone who would back me up in writing, they would have to give me disability.
I was refused based on the chronic pain even though I am taking Methadone for it based on my allergies and sensitivity to several medications. I cannot practice as a nurse on narcotics but my pain doc (not this one, the second one - or was it the third one?) told me I could get an exemption. I asked him if he'd like someone on Methadone who sleeps half the day or more taking care of his mom, or his kid, or his wife, and he looked at me like I was insane. Still, he insisted this wasn't something that qualified me as disabled, and the SSA agreed. They said I was impaired, not disabled. Well, impaired nurses can go to prison. Never mind that my attention span is about 5 minutes long, that I can nod off sitting up talking to someone, and that I forget things a minute after I see or say them; I wasn't safe practicing as a nurse and I knew it.
You have to have worked at least 10 "quarters" or "credits" in the last 10 years to qualify for disability if you are 31 or older. I'm not sure how long you've been out of work; this might influence whether you qualify for Federal disability payments or if you need to apply for SSI.
85%-90% of all applicants are denied the first time around. It is one way they filter out slackers. Unfortunately, it also does a lot of damage to people who need the benefits and are truly disabled. It is important for you to ask for a hearing as soon as you are denied. Then, you start collecting what you will need to back up your claim.
I was refused based on the chronic pain even though I am taking Methadone for it based on my allergies and sensitivity to several medications. I cannot practice as a nurse on narcotics but my pain doc (not this one, the second one - or was it the third one?) told me I could get an exemption. I asked him if he'd like someone on Methadone who sleeps half the day or more taking care of his mom, or his kid, or his wife, and he looked at me like I was insane. Still, he insisted this wasn't something that qualified me as disabled, and the SSA agreed. They said I was impaired, not disabled. Well, impaired nurses can go to prison. Never mind that my attention span is about 5 minutes long, that I can nod off sitting up talking to someone, and that I forget things a minute after I see or say them; I wasn't safe practicing as a nurse and I knew it.
You have to have worked at least 10 "quarters" or "credits" in the last 10 years to qualify for disability if you are 31 or older. I'm not sure how long you've been out of work; this might influence whether you qualify for Federal disability payments or if you need to apply for SSI.
85%-90% of all applicants are denied the first time around. It is one way they filter out slackers. Unfortunately, it also does a lot of damage to people who need the benefits and are truly disabled. It is important for you to ask for a hearing as soon as you are denied. Then, you start collecting what you will need to back up your claim.
- Get copies of ALL your medical records from each doctor who has treated your disability. Your primary doc, a neurologist, a cardiologist, a psychiatrist, a pain doc, a surgeon - anyone you've seen. The Freedom of Information Act states that if you ask, in writing, for a copy of your medical records, they are required to provide them within 30 days. They cannot refuse. They can charge you a "reasonable" fee for copying - I had to pay my primary doc's office $15; none of the other docs charged me anything. Go through and make sure you're not missing important stuff like what meds you're on, what your diagnosis is, how often you visit, any emergency calls, that kind of stuff.
- Request copies of any and all scans, x-rays, lab tests, biopsies, or the like that confirm your diagnosis. Again, request it in writing and sign the request. Ask the place that did them if you can remember. It cuts out the middle man.
- Make a list of all your meds and when you take them. List side effects - it makes you sleepy, makes you stupid, makes you clumsy, affects your coordination, affects your ability to drive, affects your sleep/wake cycle, and so on.
- Keep a medication diary. What do you take when? List PRN meds and why you need them as well as how they make you feel and if you get the relief you need.
- Keep a daily diary. What's your normal day like? Are you limited by your condition/situation? Can you drive? Can you do what needs to be done at home without reminders or assistance? Have members of your family had to pick up the slack between what you used to do and what you can do now? How is your life today compared to how it was before you got sick? Do you miss out on family celebrations....birthday parties, Christmas, reunions, that kind of thing? Can you tolerate the things you used to tolerate?
- Keep your appointments. If you need to cancel or reschedule, keep track of when and why. Call the doc and explain what's going on; don't just blow off an appointment if you feel crappy. Put it in your diary.
- Make copies of all the paperwork you have and send it to Social Security. There are copiers in their offices that you can use for free so you don't have to pay for the copies. Keep the office up to date on all the changes in your case. They won't come looking for this, and they make their decision based on what they have in front of them.
- Don't give up. Prepare for a fight. Determine how far you are willing to go before hiring an attorney. I decided that if I didn't make it on my first hearing I would go ahead and get one. It turned out I didn't need it. I got approved after the letter my shrink sent to the judge after my first hearing.
Thursday, January 21, 2010
day 1572 - a new year
Well, here we are in January, 4.5 years after the beginning of my journey with atypical facial pain. Gosh, it seems like forever some days; others, it seems like just yesterday I was doing normal things in a normal way. Heck, I don't even know what normal is any more.
The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin. They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep. It really makes no difference.
My ability to be independent has been altered. I can't always take myself to the doctor or go shopping or take care of the house alone any more. I need help. I don't always go to bed with a clean kitchen. I can't remember the last time I cleaned the house really well. We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink. I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper. The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time. I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance. What I often want to do is tell people to leave me alone and go away. I can't do that. I need my family and they need me. I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me. It's a tough choice to make.
I'm gonna go rest.
The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin. They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep. It really makes no difference.
My ability to be independent has been altered. I can't always take myself to the doctor or go shopping or take care of the house alone any more. I need help. I don't always go to bed with a clean kitchen. I can't remember the last time I cleaned the house really well. We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink. I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper. The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time. I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance. What I often want to do is tell people to leave me alone and go away. I can't do that. I need my family and they need me. I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me. It's a tough choice to make.
I'm gonna go rest.
Monday, December 14, 2009
day 1533 - new neurologist
He's a smart man.
He looked at all I had on the information sheet I take to all my new docs, listened to me, listened to hubby, asked a few questions, did a cursory exam, and left everything the way it is.
My only concern is that he didn't do any kind of exam at all on my head or face. How can he know what kind of pain I'm having if he doesn't check it out for himself? Still, as much as those things hurt, I was kinda glad.
He refilled my Maxalt. I see him again in 6 months.
At least he believed me and took what I said at face value. This is good, because we've done enough stuff to know where we are and what can - and cannot - be done. We've pretty much been through the wringer and tried just about all that can be tried.
So now we're back to a primary doc, a pain doc, a neurologist, and a shrink. Status quo has been re-established.
Migraine yesterday. Took a Maxalt and had to drive home. There was no way I could have done it without the pill. I hate driving after I take those buggers but at least I didn't have far to go. We were only at WMart.
And there we have it.
He looked at all I had on the information sheet I take to all my new docs, listened to me, listened to hubby, asked a few questions, did a cursory exam, and left everything the way it is.
My only concern is that he didn't do any kind of exam at all on my head or face. How can he know what kind of pain I'm having if he doesn't check it out for himself? Still, as much as those things hurt, I was kinda glad.
He refilled my Maxalt. I see him again in 6 months.
At least he believed me and took what I said at face value. This is good, because we've done enough stuff to know where we are and what can - and cannot - be done. We've pretty much been through the wringer and tried just about all that can be tried.
So now we're back to a primary doc, a pain doc, a neurologist, and a shrink. Status quo has been re-established.
Migraine yesterday. Took a Maxalt and had to drive home. There was no way I could have done it without the pill. I hate driving after I take those buggers but at least I didn't have far to go. We were only at WMart.
And there we have it.
Monday, November 23, 2009
day 1512
Just in case anyone was wondering how long I have been in possession of my current pain situation and if I was still keeping track....well, I am.
And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....
What a fascinating life I lead!
And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....
What a fascinating life I lead!
More and more
Well, what I had ended up being a case of strep throat, probably a sinus infection, and some good old H1N1 - thankfully, a milder strain. I've missed several doctor's appointments in the past 3 weeks and rescheduled them...some two or three times.
I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.
And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.
It's not fun getting old, but it's better than not being here.
Sorry....I'm a bit low on energy.
I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.
And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.
It's not fun getting old, but it's better than not being here.
Sorry....I'm a bit low on energy.
Sunday, November 08, 2009
flu, strep or just a bad cold?
I don't like having what I have.
I'm not sure if it's the pig flu or strep or what, but I'm exhausted; my ankle swelling will not go down no matter what I do; I have a dry and scratchy throat; I'm coughing up lovely green-yellow small chunks of gak; and I could sleep till 2011 if I didn't have to go to the bathroom so much.
It started earlier this week with a scratchy throat. It was Monday, I remember, because hubby and I had obtained tickets to Celtic Thunder and I decided we were going barring anything short of a nuclear accident. It was followed by dryness to the point of painful swallowing. I didn't have a fever and my lymph glands weren't swollen, so I thought it was probably Mr. Pig in the flesh coming for a visit.
Now I've got the throat thing, the cough, the hocking up icky stuff, and - as usual with any irritation to my head or neck or any combination thereof, the tinnitus is nice and loud just in case I forget it's there while I'm focusing on how rotten I feel. I have a negative value of energy at this point. Yesterday I dozed off eating chicken noodle soup and spilled some on my lap. Today I spilled a small amount of diet soda on the thankfully sealed keyboard - yep, dozed off again. It seems that I can never get enough sleep. This isn't how I envisioned my life would be when I hit 49, but here we are.
I cancelled 3 appointments this week so I'll have to make them up. One will be Monday with the primary doc and since hubby has it now as well, and he has his regular diabetic checkup, we'll just hit her up all at once. I was supposed to see my surgeon today and once hubby got me awake enough to dial the phone and understand what I was doing, I called and rescheduled that one as well.
This is year 5 with my obnoxious visitor. Had you asked me in the beginning of 2004 I'd have told you that by 2010 we'd have the house paid off and own it outright so hubby could retire and spend some time working for himself instead of having to go punch a clock. We'd have my hospital insurance and I'd be enjoying the job I had just started 3 1/2 months before this hit me like a ton of bricks, knocking me out of the workforce and to the fringes of society as well.
I've learned a lot about the medical profession after spending 4+ years on this side of the fence. I had, like probably most medical professionals, a tainted view of how we treated patients. I found out really quickly that if you don't physically possess a disorder that shows that your body should be in pain, you will be looked on as a drug addict and/or drug seeker, as someone who is a whiner and wants to escape reality, and as a slacker who wants to live off the government. Even people who knew you when you were well won't believe you are in the pain you say you're in. I was ashamed to have been a nurse for so long when I was on the receiving end of some of the most rude, degrading, downright hateful treatment I've had in my adult life. I've been refused treatment and labeled as a drug-seeker by the hospital closest to our home. I had a headache doctor drop me because I had a period of time, before the pain was under control, where riding for an hour to his office to wait and spend half an hour there before the hour's ride back was just flat too much...he said I missed too many appointments. I also had to reschedule a lumbar puncture due to the pain he obviously had no intention of even desiring to understand, and the hospital got upset too. Now this is a hospital that was started by a nun who wanted all people to receive compassionate care. I dare say she'd have been a bit upset at how I was treated. When I was put on narcotics for pain control and had to have the obligatory psychiatrist's management and diagnoses, and my neurologist found out I had an anxiety disorder, he was all of a sudden convinced that my whole problem was because of the anxiety and he basically wrote me off. This was the same doctor whose wife I cared for while she was dying. The family liked how I cared for her, and he had seemed to be a caring doctor till he saw those words; it was like the lights had gone out in his brain after that.
It amazes me how those of us with invisible diagnoses are treated, not only by the general public, but by the medical profession. Honestly, they should be ashamed of themselves. We are taught that pain is subjective, and that if a patient says they are in pain, they are in pain. Not so. If the care provider thinks the patient is a nut, or a drug seeker, or both, they treat you like a liar, a drug addict, a piece of garbage to be swept out the door with the rest of the trash. It's a poor reflection on the American health care system. It's appalling.
It seems I'm on a rant. At least it's making me feel better.
I've gained back most of the weight I lost with my gastric bypass surgery. Part of it is enforced lack of activity. Exercise causes pain because of the constant motion. The sound of the video, turned up loud enough to hear, causes pain. The glare from the TV hurts. The other thing is that the medications I'm on can cause edema and increased appetite. I promised myself when I had the surgery that I'd not gain the weight back.
I lied.
I'm disappointed in myself even though I know it's not all my fault. I know I'm a stress-eater and the ten years we've been married has had relatively few stress-free months. Accidents, storm issues, a tornado, an estranged daughter and family, the breakup of my son's marriage, job losses and gains, a son and a son-in-law now diagnosed with seizure disorder, a grandson who had just turned 2 and had meningitis, possible encephalitis, and we weren't sure if he was going to make it...now a granddaughter born to my still-married son and his girlfriend while the children from his marriage live with his estranged wife's two sets of parents...
Still, I should be able to relax and slow down on the eating. The fact of the matter is, I can't. It is a well-entrenched coping mechanism I've learned and learned well in my almost 50 years on this planet.
Eh, I'm done for now. Time to go put my feet up and read the captioning on the TV for a while.
I'm not sure if it's the pig flu or strep or what, but I'm exhausted; my ankle swelling will not go down no matter what I do; I have a dry and scratchy throat; I'm coughing up lovely green-yellow small chunks of gak; and I could sleep till 2011 if I didn't have to go to the bathroom so much.
It started earlier this week with a scratchy throat. It was Monday, I remember, because hubby and I had obtained tickets to Celtic Thunder and I decided we were going barring anything short of a nuclear accident. It was followed by dryness to the point of painful swallowing. I didn't have a fever and my lymph glands weren't swollen, so I thought it was probably Mr. Pig in the flesh coming for a visit.
Now I've got the throat thing, the cough, the hocking up icky stuff, and - as usual with any irritation to my head or neck or any combination thereof, the tinnitus is nice and loud just in case I forget it's there while I'm focusing on how rotten I feel. I have a negative value of energy at this point. Yesterday I dozed off eating chicken noodle soup and spilled some on my lap. Today I spilled a small amount of diet soda on the thankfully sealed keyboard - yep, dozed off again. It seems that I can never get enough sleep. This isn't how I envisioned my life would be when I hit 49, but here we are.
I cancelled 3 appointments this week so I'll have to make them up. One will be Monday with the primary doc and since hubby has it now as well, and he has his regular diabetic checkup, we'll just hit her up all at once. I was supposed to see my surgeon today and once hubby got me awake enough to dial the phone and understand what I was doing, I called and rescheduled that one as well.
This is year 5 with my obnoxious visitor. Had you asked me in the beginning of 2004 I'd have told you that by 2010 we'd have the house paid off and own it outright so hubby could retire and spend some time working for himself instead of having to go punch a clock. We'd have my hospital insurance and I'd be enjoying the job I had just started 3 1/2 months before this hit me like a ton of bricks, knocking me out of the workforce and to the fringes of society as well.
I've learned a lot about the medical profession after spending 4+ years on this side of the fence. I had, like probably most medical professionals, a tainted view of how we treated patients. I found out really quickly that if you don't physically possess a disorder that shows that your body should be in pain, you will be looked on as a drug addict and/or drug seeker, as someone who is a whiner and wants to escape reality, and as a slacker who wants to live off the government. Even people who knew you when you were well won't believe you are in the pain you say you're in. I was ashamed to have been a nurse for so long when I was on the receiving end of some of the most rude, degrading, downright hateful treatment I've had in my adult life. I've been refused treatment and labeled as a drug-seeker by the hospital closest to our home. I had a headache doctor drop me because I had a period of time, before the pain was under control, where riding for an hour to his office to wait and spend half an hour there before the hour's ride back was just flat too much...he said I missed too many appointments. I also had to reschedule a lumbar puncture due to the pain he obviously had no intention of even desiring to understand, and the hospital got upset too. Now this is a hospital that was started by a nun who wanted all people to receive compassionate care. I dare say she'd have been a bit upset at how I was treated. When I was put on narcotics for pain control and had to have the obligatory psychiatrist's management and diagnoses, and my neurologist found out I had an anxiety disorder, he was all of a sudden convinced that my whole problem was because of the anxiety and he basically wrote me off. This was the same doctor whose wife I cared for while she was dying. The family liked how I cared for her, and he had seemed to be a caring doctor till he saw those words; it was like the lights had gone out in his brain after that.
It amazes me how those of us with invisible diagnoses are treated, not only by the general public, but by the medical profession. Honestly, they should be ashamed of themselves. We are taught that pain is subjective, and that if a patient says they are in pain, they are in pain. Not so. If the care provider thinks the patient is a nut, or a drug seeker, or both, they treat you like a liar, a drug addict, a piece of garbage to be swept out the door with the rest of the trash. It's a poor reflection on the American health care system. It's appalling.
It seems I'm on a rant. At least it's making me feel better.
I've gained back most of the weight I lost with my gastric bypass surgery. Part of it is enforced lack of activity. Exercise causes pain because of the constant motion. The sound of the video, turned up loud enough to hear, causes pain. The glare from the TV hurts. The other thing is that the medications I'm on can cause edema and increased appetite. I promised myself when I had the surgery that I'd not gain the weight back.
I lied.
I'm disappointed in myself even though I know it's not all my fault. I know I'm a stress-eater and the ten years we've been married has had relatively few stress-free months. Accidents, storm issues, a tornado, an estranged daughter and family, the breakup of my son's marriage, job losses and gains, a son and a son-in-law now diagnosed with seizure disorder, a grandson who had just turned 2 and had meningitis, possible encephalitis, and we weren't sure if he was going to make it...now a granddaughter born to my still-married son and his girlfriend while the children from his marriage live with his estranged wife's two sets of parents...
Still, I should be able to relax and slow down on the eating. The fact of the matter is, I can't. It is a well-entrenched coping mechanism I've learned and learned well in my almost 50 years on this planet.
Eh, I'm done for now. Time to go put my feet up and read the captioning on the TV for a while.
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