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.

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.

still not sleeping well

My sleep cycle is still a mess. I've decided to take it into hand one way or another.

Last night when I took my bedtime pain medicine I also took 2 extra strength acetaminophen and 30 mg of Restoril. I had managed to get everything done that needed doing and we were in bed by 10 o'clock. I fell asleep pretty quickly and slept straight till 3 when hubby woke me up. I made him breakfast and was asleep in the recliner almost before he left the house at 4:30 to head for work. I slept till 7:30. I'm still tired, but not quite as bad as I was. It's going to take some time to get it going, though. I have a lot of catching up to do.

Today I have to go check the mail and then go to the bank so I can get some cash for hubby's break at work. He doesn't use much - just about $1.50 a day. After that, I will come back, check for eggs, give the chickens fresh water, and then I'm going to take a nap.

It's hard when the meds you need for your pain keep you from sleeping and then you start suffering from that. One or the other....that's certainly a tough decision.

Other than that all the meds are working well. All I can say is it's about time.

2 in 2 days

The 20th and 21st I had migraines. They were, I believe, 2 separate migraines. They were about 24 hours apart. A Maxalt just about did the trick on both of them. However, I now need a refill, and I hate paying the copay for these orally disintegrating tabs because they are far from cheap. Still, it's better than hurting.

We're supposed to go to Abby's for dinner tomorrow. I'm going to have to make sure and take it easy so I can make it. Becky and her family won't be coming but JR will. His girlfriend is working. All this family stuff and some people not wanting to come if others are there is a big fat pain in the butt. I'm pretty sure a discussion about that was at least partially responsible for triggering the first migraine if not both of them.

I'm actually tired. I may get some sleep tonight. I forget to take the Restoril for some reason...I need to move it and just take it every night.

I'm just so tired of taking all these drugs...

blast it all

Darn pain doctor....I really don't like that man.

First off, he tells me that increasing my Methadone dose to 20 mg a day, which he is doing very very very reluctantly, puts me in danger. It's bad for my health. He insists I see a dentist because it can mess with my teeth. That's a new one. I tell him when I have the money I'll go to a dentist. I can't pay for a cleaning and inspection and neglect the house payment.

Then he says I have the WORST case of PTSD and anxiety he's ever seen and asks if my psychiatrist has suggested hospitalization.

Why? Because I'm in so much pain I'm crying again?

Because I'm picking at the sores on my arms like I've done for 35 years?

Because I'm stressed?

No. Really???? I'm stressed because I hurt. I don't hurt because I'm stressed.

I reminded the dork that I've had PTSD and OCD and Borderline Personality Disorder since I was, like 12, and functioned in society on a relatively even keel with it, even managing to raise 3 kids on my own and they all made it to adulthood in one piece. Those diagnoses have NOTHING to do with the fact that I hurt like blazes. I hurt. I need meds so that I don't hurt so much, so I can sleep, so I can function and vacuum my living room and sweep and mop the kitchen and fold the laundry. I don't want to go to Vegas or Mozambique or Paris...I just want to keep my house clean and not hurt so bad I can't spend time with my kids and grandkids.

He then mentions that he may not be the right doc to treat me because he's uncomfortable with such high doses of Methadone. High? 20 mg a day? Come on! This hint wasn't missed. I know where he's heading next. He hasn't said it yet, but I know what's coming the next time I see him.

So I came home and called the doctor of an online friend. This doc is in Columbia, another 45 minutes further from my house, but she is treating my online friend like a real honest-to-goodness person in spite of her pain.

I have an appointment with her on October 22 at 10:15. I'm hoping this lady and I hit it off because I'm running out of options here. I know that Dr. Toad wants me off the Methadone. He still won't give me anything for breakthrough pain but the Tylenol. He, like the neurologist, thinks this is all related to my psych diagnosis...something which, amazingly enough, has not occurred to my psychiatrist, who sees the stress and anxiety as being aggravated by the pain.

So anyhow, for now I'm up to a whole whopping 20 mg of Methadone a day, in 4 5-mg increments. I know...I'm just the druggie of the month here, aren't I?

I'd like to do a few things to give him an idea of how I hurt. First, I'd bash him in the head with a baseball bat a few dozen times. Next, I'd take his family jewels and put them in a couple 2-inch C-clamps and tighten them as tight as I could. Then I'd walk out of the room for about 3 weeks and when I came back, I'd tell him he sounded stressed and suggest maybe he needed to be hospitalized for his psych issues. I'd give him some Tylenol for the pain and tell him anything stronger could have serious detrimental effects on his health.

Yep...there is a sadistic component to my BPD, and when I get mad, it comes out. Fortunately I never act on it...but I do fantasize a lot.

New year, same hopes - day 452

I'm up early; it's just about 5 am. I've been awake for a while now.

I think I'm taking a little time to adjust to the higher dose of Methadone. I generally get a bit odd when he increases it. Besides, my self-imposed break from Prozac (one month) is over and I'm back on that now, too, so it may have something to do with it.

So now I'm up to 5 mg of Methadone twice a day and 40 mg of Prozac. I may have to change the time on that because I'm not sure if it's interfering with my sleep or not.

Starting tomorrow I'll be looking for a psychiatrist. My pain doc recommended I see one because of the psychology that accompanies chronic pain and the fact that it's becoming physically evident on my body with signs of possible OCD as well as depression and stress. Hey, if that's what he thinks I need, I'll do it. I knew it was coming anyhow.

I'm hoping maybe this year my disability will come through and we can breathe again. In the meantime, I'll do what I can and not do what I can't.