A friend of mine noticed that I have not been blogging. He is correct, I have not been. I have been really sick. You know that things are just not right when you feel very accomplished when you can pay attention to what is on TV! I hesitate to write this, but I guess it is important. It is what I have been dealing with, and how I have been feeling....so, I even though it is more blather about being sick.....here it is.
I was doing pretty good. I had lots of energy, I was over doing it, so I was in more pain...but basically, I was doing better than I had in weeks. During this, I had a referral to home health still left over from the hospitalization in May. The social worker was hoping they may be able to come in and help with house work during the times I got really sick. Well, they couldn't do that, but they decided to come in and monitor the pain for a month to hopefully "help me on the home front".
The first thing they did was suggest a non-narcotic pain med to my doc. I have been on it before and thought I remembered that it was not a good thing. It is the anti-convulsant Gabapentin, that has been found to work mostly for nerve pain. I talked with my doc, and he had written that I couldn't afford to take the suggested dose because of lack of funds. That was true, as when he prescribed it before I was working and I had a huge deductable. So, I thought I would try it again. This was at the beginning of October.
The other thing that these nurses do, is count the narcotics in the house. I joked with the nurse about this calling her "the nazi pill counter". I have been known to take a few extra than prescribed from time to time, but I have always been honest about this and always told my doctor. So, it did not in the least bother me that she was doing this...until....
Toward the end of the October, the pill counts came up very wrong. I mean really wrong. I had no explanation for this. The nurse had me go see the doctor that night (I wish I could get myself in to see him that fast!), and I didn't have any idea why they were so off. In fact, I didn't even figure out how off they were until the next day. I didn't go back and count them, and when she said the numbers it meant nothing to me. (I am horrible with numbers, to the point that I am quite sure I have a learning disorder around them....but that is another story, and problem.....and don't even get me started on story problems as that was the math nightmare of the century when I was a kid...LOL). So, the next day when I counted them myself and looked at the calendar, I was very shocked to find out how many were missing. So, I did what anyone would do, I tried to figure out what happened. Did someone come in my house and steal them? Did I go crazy and toss them? Did I do something in my sleep? I didn't have any idea.
My doctor was basically kind to me. He suggested we blister pack the meds so I would know if I was getting up in the middle of the night....which was fine with me. (however the pharmacy wouldn't do it). Then, although I didn't make a connection....people started pointing out to me that I was forgetting things. I also started realizing that looking back on the month was like looking through swiss cheese. I could remember part of events, but not the whole thing. For instance...I remember putting on make-up for Halloween...but I do not remember handing out candy. I remember going to a friend's house for dinner, but I don't remember actually eating or what we had. The most shocking gap was not remembering that a family member was in a serious accident.
In the mean time, I agreed to go down to the Dartmouth pain clinic to start getting services there to try to get the pain better diagnosed and taken care of......at Home Health's suggestion. My first appointment was on Nov 1. After driving there and back, the pain in my back went from nothing....to about a 20 on a 10 is the worst pain scale. Not only was I dealing with the pain, but with the fact that yet another activity that I enjoyed....driving, seemed to be taken away from me. I was MISERABLE. The doctor there suggested another kind of narcotic, as they believe in something called rotation. They put you on different kinds of narcotic meds so the body does not get used to one kind. She didn't give me a prescription, but wrote a report to my doc suggesting this.
I called both the home health nurse and the doc because my back was hurting so bad, I really needed more meds for the breakthrough pain (for those of you who don't understand this....the narcotics I am on is long acting, then you get short acting to take when the pain gets worse than the ability of the long acting to work). But, you may have guessed....now that the pill count was so off, he didn't want to prescribe me any more meds. He wanted to wait for the report from the Dartmouth doc to see what she suggested. Finally, after a week, he got the report. I went to the pharmacy with the new prescription....and they, and no other pharmacy in the area carried it. I went mental.
I called my doc's office crying, but they ( I was talking to the social worker) would not do anything about it. They said they would order the med and it would be here in a week. I was not happy. I was still taking the old long acting narcotic, but it was not helping that much. So, I did nothing but lay on the couch and wish I were dead. (I was not suicidal, but I was thinking that death would be a good thing). And not only was I in pain, lots of horrible mind wrenching pain....but I was dealing with being called a liar. This, to me is almost worse than calling me the "C" word. I try to live a life of integrity, it is very important to me....and now, I am not being trusted.....
Finally.....after a week (a week ago) the new medication came through, and I took my first dose with a huge prayer......"please God, help this work well and give me back quality of life." On Saturday, it was beautiful outside. I was inside laying in bed, sweating, shivering, and feeling like I was going to die (and still wishing I just would). Years ago, I had been taking Methadone, and decided to go off it. I went into horrible withdrawals, so I know what that feels like....I was in withdrawal. I called Home Health, I called my doc's office.....to not much avail. Finally, on Monday I got in to see my doc.....which turned out to be really awful. Basically, he treated me like a drug seeking abuser. I had to pee in a cup, and worse yet...he did not believe me when I told him I had figured out why I had taken all those extra meds....
It was that new med that I had started in the beginning of October. A friend suggested that I look at all my meds and see if the side affects had memory loss (of course it was the narcotics she was blaming). At the time I said to her "yeah, but I am not on any new meds"......but, that was not true! So I looked up the side effects of Gabapentin, and lo and behold.....amnesia and memory loss was listed. It suddenly made sense to me....I think what happened, I would take the meds, but still be in pain a little while after...and forgetting that I had taken them before..take them again.......no wonder I was doing so well for a couple of weeks!!!! But, how scary is that? (and just for the record, I now use a medicine box so I can tell if I have taken them).
I told my doc, but he said it was just another theory like someone had taken them, or I had done it in my sleep. For the first time in the 10 years I have been working with him, he treated me kind of mean. I was so hurt. I HATE IT when people don't believe me. I also hate it when people who don't even really know me, who have been on my medical "team" for a month...seem to be in his ear with the theory that I am abusing or selling my meds.
So, I started looking at this. I realized how much people, medical professionals, friends, etc.....blame the narcotics on what is going on, rather than what may actually be going on. I have to say, I do this myself too. Possibly the most dangerous (or could have been) example of this was when I was hospitalized the first time in April. I was in kidney failure, which can cause hallucination and altered mental status.....but they said it was a possible overdose. Because of that, I was back in the hospital 2 weeks later, as they had got my kidneys working again, but didn't do anything to address the real reason they were failing. (I will also include here that the home health nurse told me that my doctor told her this story too. I asked her in what context, and she said the same thing I was saying.,...my doc was on vacation for the first hospitalization and the people who didn't know me thought I had been abusing the narcotics, although the drug screen came up negative) The next example....my doc has twice blamed the narcotics on my memory problems, when I know it is not the narcotics, it is the side effects of the anti-convulsants. I know this, as when I quit those meds, my memory returns, even though I continue on the narcotics.....but he wouldn't listen to this. He said he had proof in a report from another doctor I saw......it does say MEDICATION is causing the memory loss, but at the time I was on something called Topamax....aka dopamax and stupamax!
I feel like I am in a really horrible catch 22. The narcotics work, they give me a quality of life. They allow me to do things like stand and cook, sit for more than a few minutes, walk across the street. I don't know if I can live through a life without them. I am NOT psychologically addicted to these things. I don't crave them, I don't take them to get high, I don't do any of the addictive behaviours of trying to figure out how to manipulate the meds to get a high...like crush, snort..etc. I for the most part take them as prescribed. Even people who are my friends have become rather judgemental about them. That also hurts. If I could find something else that works (and it isn't like I haven't been agreeable to trying just about everything that has been suggested)....I would very gladly give over these meds.
So, I am about to make a decision that may be the end of me. I want to go off them. Not because I truly want to go off them....but I think it is time to see who I am without them. I think they have become dangerous. Not because of them, but because of people's attitudes, judgements, misconceptions, and predjudices.
In a way, I feel like I am writing my suicide note. Not that I am going to kill myself....I wouldn't do that, but I may as well be gone and away. I can't imagine that my quality of life is going to be at all good. I won't be able to sit long enough to be on the computer....driving will be out, walking will be out. I rather doubt that I will feel like talking to anyone. I know some people will say those are only fears, and that if I try to go off the meds...maybe it won't be that bad.....and I say.....it has been that bad when I am on them!! For the past 2 weeks, I have been on narcotics, not enough....and my quality of life had been for shit.
But, something has to happen. I have also been doing some research into doing this inpatient....not looking good for that. Since I am not a drug addict, I really don't qualify for rehab. There are some inpatient chronic pain clinics.....that are expensive and not covered by my insurance plan. I don't even know if my doctor will agree to this folly, but I guess we have some talking to do.
I am going to the spine clinic at Dartmouth to explore the cutting, snipping and burning of nerves coming off my spine to help with one aspect of the pain I am in. (I go in soon for a diagnotic injection into my SI Joint, if it helps, then they go back and burn the nerves in that area) So, maybe if I can get at least some of the pain reduced...in theory, that may help me cope with the rest. I am going to see their CBT therapist (which is what I used to be, so I think it is ironic when people think that I don't think this will help. This is their own assumption that goes along with the drug abuser theory, as I am sure many people say "that won't help".......I called them and asked when we can start.....not for many months unfortunatly...apparently this woman is world renouned and popular), so it isn't like I am refusing to exploring other methods of pain control.
I am tired people. I am tired of the pain, the misconceptions, the isolation, the loss of my old "life", and really the loss of me.....that this illness has caused. I don't believe it is the narcotics that has caused all this....but if you do....then you really didn't read what I just wrote...did you?
