Post by Jackie on Dec 17, 2014 14:53:02 GMT
(A few months ago...)
My name is Jackie, and I have recently begun a journey into the world of chronic illness. It began abruptly about 4 months ago, with a 3 day long migraine. I had never been one to get migraines, and maybe had one every couple of years prior to that. I went to the ER, missed that day of work, and all was well the following Monday. I didn't really think much of it at the time, but a week later, I felt like I got hit by a truck. I was fatigued, my muscles and joints ached, I had a minor throbbing headache, and really didn't want to get out of bed. I stayed home, made it through the weekend, and went to the walk-in clinic. The PA listened to what I had to say, and immediately had my blood drawn to test for Lyme Disease (Western Blot). She was very informative, and concerned, explaining how many symptoms, and co-infections there could be. She prescribed 21 days of Doxycycline, as a precaution, gave me a note to stay out of work for a few days, and sent me on my way.
During the next few days, I spent every second that I could at my desk, on my computer researching Lyme Disease. Due to it's habit of mimicking other diseases, this also lead me to learn more about Fibromyalgia, Lupus, MS, and CFS, just to name a few. Although none of these diseases are anything someone wants to be diagnosed with, at times it can be worse to be undiagnosed, misdiagnosed, or have your symptoms dismissed as non-existant.
I am going to try to write about my experiences as best I can, depending on my health, and relevant news. I hope to connect with others who may be going through the same thing, or have gone through it. Even if it is another Illmess. I am not properlyy diagnosed, but hope to be soon.
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The next few weeks...
A little over a week after that first visit to the walk-in clinic, still on the Doxycycline, I was feeling no better. I made some calls, and set up an appointment with a new doctor hoping to have him provide some insight on what was going on with me. The appointment was scheduled, and 2 weeks away. On the day I was supposed to return to work, I woke up and could barely move. My head was pounding, and I was not steady on my feet. I called into work again. Needless to say that they were not happy. I returned again to the walk in, where I was told that my lyme test was negative, but there were a couple of indicators on it that were concerning. I didn't know what that meant at the time, but went along with it. I was told to continue the Doxy, and given another few days off.
At this point, I am still reading everything I can find about Lyme and possible co-infections. I find symptom lists online,(I have almost all of the symptoms.) and I learn about Lyme testing. I discover the IDSA guidelines,(gasp) and find out that lyme tests often give false negative results. Things are beginning to make sense.
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August-November
The Doctors...
The first was an MD, who I was hoping would have some insight, and become my PCP. He has been in practice in town for 20+ years, and my thought was "With age comes wisdom." That could not have been farther from the truth. He looked me over, aked some questions, and ordered another bunch of blood tests...this one included the basic AB test. He also told me that I needed to have a mamogram, and a colonoscopy done. He then threw me a prescription for Prozac, and sent me on my way...with a clean bill of health to return to work. (sigh)
I returned to work the next day, which was a Friday. Somehow I made it through the day, and proceeded to spend the next 3 days in bed. Needless to say, I did not return to work on Monday. I have not been back to visit this Doctor.
The second doctor was a Neurologist...He was very nice, and listened to what I had to say. He then sent me off to physical therapy for my neck & shoulder pain, and set me up for a sleep study. I went to one PT appointment, and was a mess the next day. Not something I am going to do again. The sleep study was never scheduled. I don't sleep with any regularity, and I just cannot justify spending money I don't have to go sit in a room and try to sleep while being hooked up to gadgets.
I refuse to be poked and prodded into poverty for no reason. By this time, I know in my heart what is wrong with me. I need someone to confirm it...
The third doctor was a Rheumatologist/Allergy Specialist. I must say that I liked him the best. He had gotten Lyme, caught it early, and was treated with great results. He ordered another set of blood tests, including both AB & WB. About a week later, the tests came back. The AB test this time was positive, however the WB was technically not. Although I added a new band, it was still not enough for a diagnosis according to the guidelines. (UGH) He put me on 21 days of doxy, and sent me back to work...
The 4th doctor was one I visited at a nearby Health center, during the time that I was waiting for my bloodwork to come back from the 3rd Doctor.
She was no help either, did not think I had Lyme, and again we were back to the colonoscopy, and mamogram. (NO)
Once the third Doc sent me back to work, and put me on the Doxy, I had a false sense of security. I went to work, not feeling too bad. The nights were the worst because I was exhausted and unable to sleep. After about a week, the Doxy kicked in, and the Herxing began....
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Everything happens for a reason: (Three weeks ago)
Yesterday at work, something fantastic happenned. A woman came up to me out of the blue, and asked if I had Chronic Lyme. She then went on to tell me that her boyfriend also has it, and sees a Dr in NY. She says her BF is doing much better, and I got the number to call.
I am so excited. Just goes to show you never know what will happen from day to day. If I hadn't gone back to work, I would not have this name & number in front of me. So, even though, my whole body hurts, my brain is mush, and my ears have been ringing for 2 days, I am happy, and hopeful. I will see her on 12/24.---------------------------------------------------------------------------------------
On 12/4, I was feeling like I wanted to die. I called my daughter-in-law, and had her take me to the walk in clinic.
Yet another development.
At Walk-In Clinic today:
PA: “The CDC says you don’t have Lyme disease based on their test criteria.”
ME: “The CDC also says there is no EBOLA in the USA.”
PA: “You do have a point there…”
ME: “So what do YOU think?”
PA: “I think you have late stage Lyme.”
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This is the woman (PA) who first mentioned Lyme to me months ago.
I was so glad to see her when she walked in. She is always ready to listen, and eager to help. I had taken my last Doxy today, and hadn’t been to work in 3. She gave me a note to stay out of work till I see the specialist on the 24th, and faxed all of my paperwork in for me. Thank goodness there are people out there like this!!! Made my day.
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Red tape, and Ignorance.
So...here I am, I am still employed, and on FMLA as of right now. I have been waiting weeks for some sort of decision on whether or not my FMLA/Short term disability will be extended...The cupboards are bare, the rent is due, the phone is due, and Xmas is in 8 days...So I called the claims department, and they said they were missing some paperwork that should have been submitted by my employer. I call the HR person, and am basically treated like someone who is trying to "fake" it, and am told "You are out til the 24th, Merry Christmas." The tone was rude, insensitive, and demeaning. I was speechless. Once I regained my composure, I began writing a letter to my boss. It took me 4 hours thanks to the brain fog, but I got it done. The gist of it, was to let him know that no one should ever be treated in such a way. There are so many of us out here struggling to survive in a very harsh environment. Chronic illness, no matter what form it takes, is real.