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As many of you may know, I have suffered from chronic migraines for years--the last 10 years or so, 3-5 a week, each lasting up to several days. Last year the pain specialist doctor found a synthetic morphine pill that I took once a day that gave me relief from pain most days!! It was wonderful!! The only drawback was that it made me extremely sleepy and I couldn't drive. Sounds like a solution? As most of you know...insurance companies seem to rule our lives these days!!! We learned that in January 2014, they were no longer going to cover my synthetic morphine drug! There was NO WAY we could afford it. The doctors were afraid that I had been on it long enough that I was dependent on it so they switched me to similar drug on the pain relief scale --Oxycontin-- but not on the side effects scale.... This one shut down my colon..... I am in no way blaming my doctors!!!! In January after not having a bowel movement for several days at home, and being in severe pain...I ended up at my family doctor's office--that I'd been going to for over 15 years--to discover that he had retired in December at the last moment (Obamacare got him -- it was going to cost him to much to keep his practice!!) He had turned all his patient's over to his new partner, who I'd never seen. The new partner, admitted me to the hospital, where I went another 6 days before having a bowel movement....this new partner--also refused to contact my pain management specialist, and decided that since I'd been taking oxycontin, I could take morphine--and then did not monitor me--and came extremely close to giving me pneumonia. He certainly had respiratory and the nurses hopping all night one night!
In February -- without the help of narcotics this time I showed up at my doctors again after several days of no bowel movements hurting....This time I went another nine days in the hospital. They had to give me a shot--the strongest laxative on the market.... 30 minutes later WOW! Then, I made a mistake, I had been on dilaudid every 4 hours since I'd been in the hospital for pain and when the laxative started working I quit taking it, because I wasn't in severe pain anymore. Well, around 6 a.m. the next morning...something was WRONG....I didn't know what...but something was WRONG. I was hot, then I was cold...I was anxious...my heart raced....I clung to my husband and begged him not to leave me...my GI dr. thought it was a reaction to the laxative shot.... it was so bad the nurses were giving me anti-anxiety drugs,,, it wasn't until 24 hours later that someone realized that I was going through drug withdrawal!
OK -- so my colon quit on me.... but this time it didn't start right back...I ate applesauce and drank ensure for months!! Then gradually added a food at a time. Around, I guess--September, you could take me out to a restaurant and I could order off of a menu and find something to eat!
With the February colon shut down came pain that did not go away. I almost always have a place in my lower left abdomen that hurts...as a matter of fact, I yelled, under anesthetic during my colonoscopy, when my doctor, hit that spot in my colon--and there is nothing there, at least on the inside. The theory is -- that once my colon heals that I need to have exploratory surgery, that I may have adhesions and scars from my hysterectomy outside of my colon that are hurting. I have had an "FUO" Fever Unidentified Origin since October 2013.
My GI Dr. sent me to a Infectious Disease Specialist to find out why I was running this fever and have had the abdominal pain.....He did discover the source of the fever and treated it with an antibiotic. He also discovered though blood tests that I was in the beginning stages of a connective tissue disease. Around June the symptoms really started, I started stiffening if I was in one position too long. I'm to the point now where if I sleep 6 hours, it takes several -- at least 5 hours to "loosen up" when I wake up -- it is almost not worth it to sleep that long -- if I can -- which brings us to the next paragraph.
When I left the hospital in February. The doctor in charge -- took a look at my rather extensive list of medicines and said "You are taking way too many medicines -- let's cut this list down." He proceeded to take an ink pen and slash though this vitamin and that vitamin, this muscle relaxer and that muscle relaxer... saying this duplicates this and that is just a duplicater this this..... you are already on a blood pressure pill you don't need another one... here.. and so on.... He cut my list of medications almost in half.... well that is fantastic!! I was taking too many medicines--I agree with him, but since then, I have slept an average of three hours a night--unless I am heavily medicated. A) I have what is called a Barret's Esophagus...which means I have a precancerous condition from getting REALLY REALLY BAD REFLUX! I was tired of having reflux before it was popular to have reflux! I absolutely cannot go to bed unless I have not eaten five hours before hand. Now my husband and I have really awkwaard schedules, and very rarely do we eat before 7:30. Which means... I cannot go to bed before 12:30--B) Now I take a thyroid pill which is supposed to be taken daily at the same time every day. I take mine at 6 a.m. I take it at 6, because you are supposed to take it on an empty stomach and not eat anything an hour before or an hour afterwards. This also allows me to space my iron and calcium pills away from the thyroid pill properly, because they interact. C) If I go to bed at 12:30 and am going to get up at 6:00, then I only have 5 1/2 hours, not long enough time to sleep to take the heavy sleeping pills I need. So I'm doomed to get only three hours. D) Go to bed at 12:30, and wake up at 3:30! or stay awake until 3:00 and wake up at 6:00. I've done both.
Sleeping only three hours a night makes me a real zombie, and makes me drop off at the weirdest times during the day--and without warning! I fell asleep, to the delight of my five year old grandson--and the concern of my father, four times during dinner one time, dropping my fork each time, and ending up with my fingers in my mash potatoes one time! To nod off for a few minutes during the semon is one thing... but I fell asleep during Sunday School (we meet in the Sanctuary) and they let me sleep.... I woke up when the first hymn of church began! Totally ridiculous! This is the point that I'm getting to....It plays havoc with my tatting! I almost can't tat! With my migraines making reading patterns difficult (I still have them--only now I can't take anything...tatting them is worse, when you go to sleep and make a mistake, or actually tat IN your sleep and make a mistake! I spend more time taking OUT mistakes than I do actually tatting!! This little Santa that I did, should have taken me a couple of hours ( maybe two) It took sixteen. I was actually finishing it on the way to the dinner, putting in the final two rings at the restaurant!
As I was writing this blog I got a call and heard the results from some blood work they did recently, (12 vials worth!) I may not have a connective tissue disease--my thyroid is way out of whack and that may be creating all kinds of problems including the stiffness and pain, as well as the sleepless nights!! I'm being referred to a neurologist (hey I already had an appointment set for late in December! --God works in mysterious ways! and an endocrinologist -- hey I have an appointment already with mine in two weeks!
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So, all I'm telling Santa is that I've been good, and that he can leave lots of shuttles, patterns and thead under my tree this year, because I know next year is going to be better!