Thursday, December 05, 2013
I have not blogged in a long time...There really is not much to blog about. Still dealing with shoulder pain and have not yet made an appointment with the surgeon. I would be seriously surprised if the MRSA colonizing in my nostrils is gone now. I need to find out if he will go ahead and operate despite that. That too, would surprise me. But first I need to take care of my eyes. I've been going to an ophthalmologist every month for the past three months. He thinks I have glaucoma which scares me...I do not want to lose my sight...I can't imagine how awful that would be. The eye doc wants to do one more test and then is talking about doing laser surgery on my eyes to put some ducts in to alleviate the pressure in my eyes. Because my husband is an employee of a major medical center in NY, we have to have EVERYTHING done in the hospital...even minor laser surgery. I also need to make an appointment to get an epidural in my SI joints. That, too, has to be done in the OR at the hospital. I do not have the money for all this stuff.... Nor do I have the patience for it...and for all of the appointments before and after these procedures. The price of my copays is doubling this coming year ...which means instead of 125 a month I will have to pay $250 a month and my medicines are rising also.
I just want to back out of all of this stuff ...let 's play PRETEND. Let's pretend I have a normal pain free body. OK? I keep ignoring the pain in my shoulders hoping somehow that it will go away. I was hoping that the ACTEMRA (the IV med I'm getting for my RA and PsA and Sj) would be effective in dealing with all these conditions and that I would be able to avoid surgery -- at least for a while. Right now, I would say that the ACtemra IS helping to some degree....at the end of the month...about three weeks following my infusion, the pain escalates (Just to remind me it's there).
This month the Actemra made me very sick to my stomach. I had horrible diarrhea and cramps. Fortunately that only lasted for one day and night.
I know this is turning out to be more like a medical log rather than a blog about food. Right now all of these issues supersede the battle to lose weight. My weight seems to be slowly going back down following my month of steroids....the swelling is down in my stomach and my chipmunk cheeks ---I think they are unchanged. Oh well, in time I guess they will recede.
I've thought of trying to exercise on the bike. I know that the first week on the bike will be tough...I will be lucky to make it through five minutes.
My computer is on the fritz also. I had dropped it and cracked the case and then the power plug wasn't making contact because it had been pushed inside the case. I sincerely hope that this will fix the problem. So for now, I have been borrowing my daughter's computer which is a less than optimal solution.
I have pretty much decided not to decorate for Christmas. I know this disappoints my daughter, but I just don't have the energy to drag all the boxes out and decorate. Also My husband knocked into on of the boxes in the garage and it fell and many ornaments were smashed. I haven't looked in the box to see which ones I'd lost. I know it will be heart breaking to see which ones are broken...so part of my reluctance is denial. This is the first year I've totally skipped decorating...although in the past two or three years, each year has had less and less of the decorations out. ONe of the ladies in the RAD team said that she no longer decorates and neither does she feel guilty. I need to get beyond the guilt also.
Well, anyway...that's what's happening with me. I will try to be more regular in my posts.
Wednesday, November 20, 2013
Right now I'm in the midst of re-assessing pain meds. I would like to go off of them....I'm sick of explaining myself to people as to the severity of my pain and why I am kowtowing to pain management doctors. I am tired of explaining my pain. I am tired of worrying about whether or not my pain meds will be available when I need them in the future. Is there something inherently more noble in those who refuse pain meds? Or are they just surfing in on a wave of pain and are they more strong? Would I really be more independent if I didn't take narcs? I remember long tearful nights in the days just prior to going on to constant morphine...No sleep. Nothing accomplished in the day.....just getting through one moment at a time. Is that noble? Or just stupid? Some people are so much holier than thou if I use pain meds and they don't. Is suffering when you don't have to, noble?
I'll tell you what. If I could get rid of my PM guy I would be very happy. Maybe that alone is benefit enough to warrant a serious detox. It would make it much clearer as to how well the biologic is working also. I don't need narcs muddying the waters. So yeah..I think I do need to get off them. I have an appointment with the PM guy next week. Do I keep the appointment and tell him my plans? There was some kind of med he can use to reduce the pain of detox. I think I will check that out.
Is there something inherently dignified and admirable in suffering? Is there something admirable in refusing tried and true means of reducing pain? Does it make you a "warrior?" It DOES give you wrinkles and gray hair. And according to that pain doc whose site I once read on here...Pain shortens your life. it is a life shortening , life threatening process....It brings on heart disease and wear and tear on all the organs. I used to be all proud and cocky about my unmitigated pain...But really. I think when I'm weighing this out for myself, Pain is not inherently good. Suffering pain is not inherently noble. So there must be some other motive for quitting the meds.
I would have to say that just the ability to get rid of one more doctor, can only be a good thing. It will save me $40 a month....Plus the cost of gas and food. And too , I need not worry about not having meds available to me in the chaos of the new healthcare package when every thing becomes a cause for concern and when the same people who seek to take guns out of the arena will also be hell bent on ridding the world of narcotics (even those used for medicinal purposes...) I do not want to have any area of dependency....I do not want to empower ANYONE to make me miserable.. If I'm miserable it will be a misery of my own making....One that I can manage and control. It's for this reason that I drink decaf coffee..... I do not want anyone to have the power to give me a headache.Therefore. I will not yield to a caffeine addiction.
With pain drugs however, the picture changes. It's not because of the limitations put on me by the drug that makes me miserable (although it certainly can)....It is the limitation of the pain itself that limits me. So there is a subtle , yet profound difference here. Where lies your greatest limits? Is it the pain or the drug to treat the pain that we trip over in our quest for independence? That question must be answered on a case by case basis. If it is pain that keeps you bound, then it makes sense to put up with some difficulty and annoyance that being medically dependent on a drug can bring. If it is your efforts to procure meds that keeps you running in circles and not performing at your best and at odds with your doctors....Then honey, you need to get off those drugs and invest in life.
I am medically dependent on a very powerful narcotic. However,other than trying to remember to take it twice a day, I do not think about the drug again until my next dose. I do not enjoy it. It does NOTHING to me or for me except to make my pain more tolerable. I am not a junkie. Or a "user" or a "seeker" I would be very happy to be rid of this drug...however if it must be then it must be that I take it in order to participate in life on any level whatsoever.
Two things P*** me off. 1) is some organization , law, or mindset that dictates that because I use this drug I am then "a user"....they are using two very different meanings of the same word to make an invalid point.
2) Some person with chronic pain---whether to a small or great degree--who thinks that because they forgo the drug, they are somehow more noble than I. I"ll see your pain and raise you four. Pain is not a
competition. It is an unholy hell of a condition that must be dealt with in any manner we can find effective. The decision about how to fight your personal battle with pain, is a personal one. And NO one has any right to comment on your method of war, unless you truly ARE a user....in which case, you belong in a rehab.
I've been to hell and back. I've experienced more pain in the past 30 years than anyone should have to. I've fought with the narcotics...I've fought without reprieve. I have had morphine pumps implanted in my abdomen and found even there, that the relief is short lived. Once more I am in a place where i'm reconsidering my tactics....But that is up to me. And I think that when I arrive at a conclusion...I will not be discussing it with anyone. It just is nobody's biz.
Friday, November 15, 2013
Not feeling as "RAVENOUS" as I was for awhile (I'm on a high dose of steroids right now) HOwever, FOOD IS LOOKING AWFULLY GOOD. I think I had two or three breakfasts....well, maybe one of those was lunch because I 'm not recalling a lunch per se. I have gained about 12 lbs. But beginning now I have to really watch my weight. A lot of those 12 lbls is likely fluid...I need to make sure DAILY that the weight is going down and not up.
It's warm today ..I have my window open.I am eagerly awaiting dinner.I bought a rotisserie chicken and I confess I already stole a forkful. I'm gonna have roasted red potatoes and asparagus with it. Lousy steroids. They make food into a love affair....and about as easy to ignore as the love of your life.
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