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.
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