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.

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!

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.

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 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.

Monday, November 02, 2009

plodding along

Well, my arm is healing up pretty well. The scars are bigger and longer than I had expected but I remember my hubby telling me that the surgeon said there was a bit of a mess in the upper blockage area and he had to do more than he expected. The tingling, numbness and pain in that arm and hand are gone.

Now, it's a matter of scheduling surgery for the right arm. I was crocheting the other day and honestly, I didn't get two rows done before my thumb and first two fingers had gone numb. I was thinking it had let up, but that's because I've not been doing a lot of the things I had done before. It's still there, all right. I'm glad he didn't even think of doing the two together. I'd not have been able to do anything at all.

The edema in my feet from the Methadone is worse now than it has been. For the last couple weeks I've had almost constant swelling and it has been so bad a couple times I couldn't get shoes on. That along with the weight gain are the two worst side effects of the drug that keeps my pain in check. Given the choice, I'd take the swelling and increased weight over the pain any day. It's just no fun having to choose.

I'm not sleeping again. A couple hours here, a few hours there, and that's all I get. It's been 4 years since I've slept well at night. Man, do I miss it. Now if I go to bed I'll sleep for a bit and then get up, or I'll lay there for a few hours and decide the heck with it and get up. There's no sense in laying there all night, listening to hubby sleep. It gets frustrating.

After the first of the year it will be time to deal with my teeth. I seriously need a cleaning and such, but I can't be awake because those hypersensitive nerves of mine would have me clawing at the ceiling. We got a flyer or two in the mail about a place towards St. Louis that does sedation dentistry. I'm going to check them out and see if they can do my teeth. We've got the insurance; I might as well get it done. Otherwise, my teeth are gonna start falling out of my mouth. If they can knock me out I have the feeling it will be fine. It's either that or dentures....

I've been able to sew more in the past several weeks. I can't explain why but sometimes the machines really hurt my eyes and ears and head. Right now, they aren't doing that, so I'm taking advantage of it and sewing away. I love sitting at the machine. Being able to create things has always been a sort of therapy for me.

So, basically nothing new here on the home front. Since I believe, though, that nothing stays the same for long, something is bound to happen soon.

Friday, September 04, 2009

two weeks out

I'm two weeks out from my first carpal tunnel/median nerve release surgery.

I am so sick of the bandages already I could scream. The skin underneath is dry and itchy and I don't like dry and itchy. I want to rip the blasted thing off and take a shower, except I don't have more of the cotton cast wrap so I can't. The 4x4 underneath the cast wrap is rough at the edges so it makes me itch and the skin is irritated there.

Can you tell it's a whiny kind of day?

At least I've been doing good with the extra pain meds. Total, for the two weeks, I've taken 37 Lortab. I've not had to take more than 1 at a time since 6 days after the surgery. I think that's pretty darn good.

I'm driving again, albeit carefully and slowly.

They're giving me two months' worth of Methadone prescriptions now. I take them both to the pharmacy and they fill one, then I call when I need the other one filled. Schedule two drugs have to be done this way.
I saw the nurse practitioner Wednesday. She's nice.

The ringing in my ears is bugging me more now than anything else. It just never, ever stops. I'd like to disconnect my hearing sometimes, when the ringing gets so loud that it's all I can hear or think about. It interferes with my hearing, with things I can watch or not watch on TV, and all kinds of other fun stuff. I'd really like to have the ringing not be so loud, but I am so over having to take drugs I'm not willing to go and have them give me something else to pop during the day.

I'm not sleeping well. This morning I did something unheard of and, after oversleeping and not getting up for my 6am pill, I stumbled out at 8am, fed the chickens, came back in, forgot the pill again, and sat down in the recliner; there, I passed out until noon. I'm definitely sleep-deprived. I seriously think I could sleep for a week, only waking up to take drugs, drink something, and go pee. However, there are chores to do and kids to see and all that other jazz, so it's not happening. No way.

Enough is enough already. I don't know why I've been handed this pile of stuff. Apparently God has a lot of confidence in me. I guess I'd better stop thinking I'm so weak.

Tuesday, April 28, 2009

more and less

The Methadone is doing pretty well. I'm under decent pain control with the exception of my left arm. I'm not sleeping well, or at least not more than a couple hours at a time, but I'm making it.

I've been sewing things in preparation for the new granddaughter due next month. I'm workin on her diapers now. Her parents decided to give cloth diapers a try; I'm making the infant size first so if they decide to go with disposables I haven't used as much fabric as I would if I made the full set of older baby diapers. I'm also making myself a new dress. It's a lot like my other dresses but the neckline is less likely to leave me flashing than the other one. My bosom is smaller than some, and the lower necklines have far too much fabric for my needs. I'm hoping this one is more to my liking.

I've been having pain in my right forearm and upper arm for over 2 months now. I went to the doctor and found out that I have a neuroma on the nerve that ennervates my left arm, and the growth is right by my left pinkie. It makes my whole arm hurt, sometimes when I'm just sitting still and doing nothing. Apparently the tumor has been getting bigger and bigger slowly and now it's big enough to cause more pain than I can tolerate on a daily basis, even with the meds I'm on. So anyhow, I see a hand surgeon on May 23 to arrange to get the growth removed. This is definitely not high on my list of things to look forward to, but it needs to be done, and I'll get it done. It's going to make dishes and chicken chores interesting for a while, but at least maybe I'll feel better.
I made a sleeve cover for my left arm so that I can stop picking on it. If the sores heal up all the way that will lower my risk of infection when I have the surgery. It's hard to explain, even to my internest/primary doc, that a compulsion is just that - a compulsion. I can't just decide NOT to do it because I know I shouldn't. She suggested hypnotism and seemed a bit upset when I told her I don't do that. I believe it's opening a door to the demonic and I don't want to take that chance. She didn't seem to understand. She's of the opinion that it can help people. I don't believe that it's an option for me and I'd rather not go that way, whether or not she is happy with it.

When my hubby was laid off in February, I was approved for Prescription Assistance for my Lexapro. It saved an awful lot of money since Lexapro is just shy of $150 a month without insurance. Since hubby is back at work, we won't need the assistance any more, so I will tell my psychiatrist to cancel the prescription assistance and let someone else have it who needs it. There's no sense in using it if we don't need it.

I spoke with a cousin last night. She has nerve issues as well in the same arm as mine. I'm wondering if it's genetic. That might explain the headaches and all. It could very well be.

Other than that, life is status quo. The pain is here every day, and I take my medicines like I should, and pray for the courage and strength to go on and to be strong and to be thankful for a loving family and good insurance and all the blessings I've been given. It could be a lot worse.

I guess that's all for now.