On Thursday I woke up with a horrible headache, side, back and flank pain, blood in my urine, nausea etc etc etc! I was miserable to say the least. I rather suspected that I had a kidney infection but had been putting off calling the doctor and I guess it progressed to the point my body wasn't laying still for it any longer! I called my doctors office and he was off for the day and his nurse practioner was booked up! If I needed to be seen immediately I should go to the ER. So I did with dread in my heart! This time I was shown to the back and the minor care part of the ED and was seen rather quickly by an old nurse friend Pam, and Dr. R. Williams. I got the fun of an IV, lab work, and a trip to the cat scanner but all in all it turns out that I had a fairly advanced UTI and maybe had passed a kidney stone. YUK! Not much fun...actually a real pain!
I think the reason I was so resistant to going to the emergency room is the stigma having my list of diagnoses brings with it. I was sitting in the chair thinking about what I should tell the intake nurse involving my history of pass illnesses and thought...definitely not Fibro! Well hell she already had it documented in my past visit history!!! I hate the stigma that goes with that diagnosis! Heather tells me to just believe in it myself and quit apologizing for having it...I didn't ask for it it found me!!! I have been fighting with this crap since 2011 and you would think I would pull up my big girl pants and just live with it but it is difficult. What crap have I been fighting? Well lets see...
- Chronic Fatigue
- Post infectious disease syndrome...I have had lymes disease and RMSF!
- Irritable Bowel Syndrome(IBS)
- Restless Leg Syndrome (RLS)
- Hypothyroid disease
- Hypotensive issues
- Celiac or gluten intolerance
- Raynaud's Syndrome
- Sjogrens's Syndrome
- mild Rheumatoid Arthritis (RA)
- face and skin cancer
What drugs do I take now? Very little, as little as I can get by on. If I don't think they are doing anything for me I have been taking them and trying them out for 4-6 months then weaning off if I don't think there has been any difference. I am currently on...
- Synthyroid 0.15mg daily
- Plaquinal 200mg twice daily
- Prilosec 40 mg daily
- Multivitamin (MVI)
- Fish oil
- cranberry capsules
- Vit C
- Vit D
- Occasionally I will have to take a pain pill or muscle relaxer but they don't do much good for me. I seem to do better with just Ibuprofen or ASA
- Requip, ropinerole made me obsessive compulsive and I still had leg cramps taking 4 pills a day. That Rx was over $800 before insurance brought it down to $65 for me.
- Lyrica...made me so depressed that I didn't care if I hurt or not I didn't care if I lived or not and at one point wouldn't have prevented something from killing me had I been given a choice...ie moving out of a car's way or being run over.
- Savella worked in the beginning but then making my heart race and I was feverish all the time. I had episodes of tachycardia and frequent PVC's so I weaned off it as quick as I could and it still took me almost 6 months to get off of it.
I take a MVI cause I have always felt like people should take one to cover for the deficiencies in their diets. I listened to a tape of the positives of Fish Oil and I take that for that reason. I don't know that I can tell any difference from it or the MVI but hey I believe in prevention! The Vit D and Magnesium were Rx for awhile because neither vitamin/mineral was at levels they should have been and I have been told I will have to take them the rest of my life. The Vit C I take because Linus Pauling showed us back in the 1970's that it has a lot to do with the immune system. I figure all the research he did taking it wouldn't hurt me and it might actually do some good!
The gist of this post is to tell you I am okay and so are you if you are blessed with any of the above diagnoses. I apologize regularly to myself and to the patients I cared for in the past that I wish I had paid more attention to them and what they were telling me was the matter with them. Yes there is a stigma to Fibromyalgia and Chronic Fatigue Syndrome and many other disorders like them. I wish there was a lab test or x-ray that could point positively at what we have but right now there isn't one. I am looking at it from the perspective of being an explorer and traveling uncharted paths so others can have an easier trip. When someone tells me that they don't believe in my disorders I am going to tell them "too bad...I wouldn't wish it on you to show you it exists cause it hurts too bad!"
Gentle hugs dear readers...