Wednesday, June 23, 2010

Time Keeps on Ticking

I first want to say to my sweet husband that I apologize for not posting for so long. I know that you read my posts regularly to help you understand where I am emotionally with everything and without posting regularly; you are sometimes left in the dark. I love you.
I don’t know where to begin. I have had so many downs the past couple of weeks; it feels like months. I was able to attend my daughter’s college graduation and for that I am beyond thankful. When I left, I had been on Savella with no noticeable issues. I didn’t feel as though I was getting much benefit on the medication, but I hadn’t had any bad side-effects at that point. After we flew to Nashville, I started having some swelling. However, we not only flew, but also drove five hours immediately after an eight hour flight. I didn’t think much of it and wrote it off to just traveling. Fortunately, I was able to spend the time at my husband’s relative’s home with my feet up, with no changes. Time was clicking to the graduation day and I began to panic. My feet looked like sledgehammers! I was completely miserable and called my doctors office. My doctor told me to go to the emergency room immediately. Of course, I wouldn’t do that. Against my better judgment I took an over-the-counter diuretic for two days. I began to become alarmed when the diuretic didn’t help and it didn’t increase my urination. The night before graduation, I attempted dinner with the family out and the pain was so unbearable that I had to miss my daughter’s celebration party and spend the evening in the hotel alone. The sadness was overbearing, but I had to pull it together for graduation. The day came as did the heat, fever, and pain. However, my excitement and pride for my daughter overshadowed any health issues. Between day 21 & 24 on Savella I realized that the medication may have attributed to my swelling and I spent the next few days cutting it down and then out. My swelling went away by the fourth day of cutting it out. So, for me Savella did not work and just like Cymbalta & Lyrica I had a severe reaction and it is now on my list of allergies. I was so disappointed because I was three weeks into it before I had any issues. It saddens me because if I had any issues with it before my trip I would have stopped it and maybe I wouldn’t have had so many problems on one of the most important days of my daughter’s life. Looking on the bright side…at least I was there.
Ok, so I finally had my first Lidocaine IV Infusion! I was nervous about it, but it wasn’t all that bad. They use a small IV and left me in a comfortable outpatient room for approximately 3 ½ hours for the entire process. I didn’t have any side-effects, but I also didn’t have any noticeable pain decrease. It made my lips feel like rubber for a few hours, but other than that not much to report. However, my pain doctor says that it takes some people three or four times to see a benefit. So, I am on the list for another round.
I had another visit with my pain doctor and entered into a pain contract with them. My pain plan is now 15 mg Oxycontin four per day, 10 mg Percoset three times per day, and Neurontin up to 900mg per day. I am still on my regular medications for Lupus, Sjogren’s, Hypothyroidism, etc. While visiting the pain clinic I had two injections into my hips to help with the pain. I have to say it really helped with the burning for almost four days. The relief was awesome! I will take what I can get.
If this isn’t enough of a recap, I had my second night stay at the Sleep Disorder Clinic and picked up my equipment today. I will have my first night sleep with it tonight. Wish me luck! It turns out that my oxygen saturation level would drop as low as 82% and I would have up to 51 breathing incidents per hour, where I would have interrupted breathing or stop breathing. The results of the second night with the machine kept my oxygen saturation level between 92% and 95% with only one incident per hour. The doctor said that getting some REM sleep will help in healing my body and hopefully helping with the Fibromyalgia…fingers crossed.
Well, I think that this is my medical update, but I received good news last week. I have been approved for Social Security Disability. I say good news, but with it comes many emotions. I am very thankful because I read other posts from people struggling with the same issues that I am and they have been fighting for Social Security Disability for many many years. The process is daunting and since it so difficult for us to prove that we are truly disabled through such a degrading process I will count my blessings. I was so thankful that I didn’t have to sit down before a Law Judge and share such personal information and feel as though I am begging for the benefit. It took me just 1 yr. & 3 mos. for an approval...this is unheard of!
So, my maintenance plan now is the Pain Clinic, Rheumatologist, Internist, Physical Therapy, Psychotherapy, Fibromyalgia Injections, IV Lidocaine Infusions, and the CPAP. I honestly think that the events over the past month have been so much to take with many highs and many lows that I really don’t know which way is up right now. I can’t help but quote the cliché of “One Day at a Time”.
Thank you to my followers and I truly apologize for the delayed update. I hope that this post finds you well and let me know if you have any questions about any of the therapies that I am doing. Take care and thank you for my family that truly keeps me going…I love you so much.

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