When your Body Attacks 1.1
So…the other day I was obliged to go to the doctor for a stubborn stomach bug…let’s just leave at that rather than have an unnecessary over share (because I will be having necessary ones later on, trust me). Ironically, the day that I had come down with this “stomach bug” I had finally broken down and made an appointment to see the doctor about some maladies I had been having over the past few months which I ended up cancelling because of sick little girl…oh, and me too. Actually, it worked out well I could kill two birds with one stone. I hate going to the doctor, I always feel like a hypochondriac even when there is something really wrong with me. He ordered a few blood tests for the stomach bug and then a couple of test for my other complaints. A few days later I got a call from his office telling me that the stomach bug test were all normal (goodie!), but I needed to come and discuss the “other” test. Was next week ok? First of all, the day was Wednesday and the appointment was for Monday. I think it’s just a little cruel to do this because you are going to think of all of the worst case scenarios, its human nature. Don’t tell me that there was a problem, refuse to talk about said problem and then make me wait for nearly a week to find out what the problem was….TORTURE!!!!!
The following week I go in for my “BAD” test results. Okay, my Rheumatoid Factor was nearly four times the normal high. Which apparently is very high, but his additional encouragement was it wasn’t the worst that he had seen. Delightful tidbit of information. Then he starts to talk about all of the nasty and confusing diseases that can be associated with this test result and how we have to start narrowing down all of the possibilities. He attempts to get a more detailed personal and family medical history which honestly as far as the family goes…ok , I know a few things but little direction would be helpful like what are you looking for specifically. He then orders more blood work and tells me to make an appointment with a Rheumatologist once the results of the second round of test were available.
The kicker…I have to be NSAID free (I was currently taking Celebrex, but also includes Aspirin, Advil or Aleve) for 10 days before having the blood test done. Are you kidding me, I had just started my period (sorry for the over share there) plus I can’t remember a day that I haven’t needed a NSAID in the last few months. I was diagnosed with tennis elbow a few years ago which is why I take the Celebrex. I am thinking…I will be one grumpy bitch for the next 10 days. Strangely enough, that wasn’t the case. Unhappily, I realized how badly my body was hurting me but was masked by better living through chemistry. I felt like an exhausted, drunk, red-eyed Sloth that had been hit by a train whilst having every joint in my body overextended repeatedly. Tennis Elbow was cake compared to this. As an added bonus, I swelled up like a bullfrog on the long drive back from Florida. Oh, did I mention that we were about to leave on a quick-trip vacation? Yes, we were. Nice, right?
Once the blood test was done, I was told that it was OK to take Advil or Aleve, but to wait on resuming the Celebrex until I had consulted with a Rheumatologist. You would think that they would help or at least take the edge off, but NooOOOOoo….it was like pissing on a wildfire. CRAP! I had to resort to using the 2 year old leftover Vicodin from my Carpal Tunnel Release Surgery on a couple of occasions. I know....self medicating is very bad, but so is chewing off your arm or going insane with the desire to chew off ones arm. I chose the lesser evil and was no worse for wear.
Now, I am thinking about myself, my lifestyle, my tolerance for and my general compliance with medical things to decide what my preference in a disease would be. The good thing is I do know what it’s not: Lyme’s, Thyroid related or Vitamin D deficiency (which apparently has some horrible effects). At the present, I am thinking that any one of those is a better alternative.
Waiting…Waiting…Waiting. Finally…I got a letter, not a phone call; a generic carbon copy style form letter stating that the test results were still high and I needed to consult with a Rheumatologist. Alright, now here is a big bitch….that is fucking unbelievable!!! I am also thinking….maybe I need to find another GP, because if you as my Doctor or your office staff thinks that is good practice…you are complete wrong. I worked in Veterinary Medicine for years, even in Corporate and we would never do that to a client….ever, and if we did I don’t think we would have had very many clients.
Nonetheless, I was able to get until see the Rheumatologist rather quickly, very nice women. She is positive that I have an Autoimmune Disorder and right now it’s called Undifferentiated Connective Tissue Disease (UCTD) and/or Sjogren ’s Syndrome. Essentially, UCTD means that I have a lot of symptoms of a couple of different autoimmune diseases (little Lupus, little Rheumatoid Arthritis, little Scleroderma, little Sjogren’s ….and the list goes on and on and on); but there is not enough evidence that points to one in particular. Namely… blood test, however that is likely to change since they took liters of blood to run more test which will either confirm or not. I am certain after that there will be more testing. The bright spot was the Ophthalmologist informed me that although I do have very dry eye (caused by my tears not producing enough oil)….I don’t have the kind found in Sjogren ’s syndrome, however it still not off the list because I have serious gland inflammation. Sjogren’s attacks moisture producing glands (tears, saliva, gastric, etc); it also has a long list of other symptoms. So what does it mean for me? Mostly, I have fatigue from hell and joint pain even to the touch. Basically, I feel like I have a really nasty flu without the coughing and sneezing. Then there are the every now and then things like when I take a deep breath I get a sharp pain in my chest and the fun little heart arrhythmia that I wanted to blame on too much coffee or stress. It seemed like when I was willing to go to the doctor it magically went away. Brain fog….well, I think that pretty much describes what it is....sort of! Raynaud’s phenomenon, which is when my hands and feet get cold or I am stressed or for no particular reason at all (this will happen in the summer which is truly weird) they turn white and go numb caused by an abnormality of the blood vessels. I also have pretty red cheeks that come and go on my face which may or may not be related. My GERD is probably wrapped up in this somewhere too.
What have I learned about autoimmune disease is that it can take years to finally be diagnosed with an autoimmune disease because they mimic so many other diseases. There is really no one test that will confirm one disease or another; rather a combination of test and symptoms. Autoimmune diseases are fundamentally your immune system attacking any part of your body for unknown reasons. This disease could stay like it is now(which would suck), it could get worse(which would suck even more) or go away for weeks(not bad), month(even better)or year(excellent) and suddenly flare up one day(yuck) or never be seen again(ok, you get the point). Confused yet? What I have also learned is that I am going to have to learn to adapt to this change in my life. I must keep my sense of humor and not get lost in self-pity. Laugh at it and it doesn’t seem that bad…cry and you feel like your world is over.
Stay tuned….and I promise it won’t be another two months until the next post…..there is too much going on not to talk about.
