For those of you who don’t read, or haven’t kept up with, my gaming blog, I have had chronic hand pain for almost two years now. I’ve gone through doctor after doctor and been told time and again that my symptoms were strange, no one knew what the problem was…and yet none of those doctors kept digging to try and figure it out. I’d have an appointment scheduled in three months to see how I was doing, or if there were any changes, and that would be that.
As a result of my complete displeasure in my treatment, I am now seeing my third Rhumetologist. I’ve also started telling my doctors of my ever growing history and what caused my displeasure with my prior doctors. As a result, I’ve found that I’ve started to be referred to some fantastic doctors – and I really like my new Rhumetologist. She actually seems intrigued by my strange symptoms and interested in solving the problem.
As part of ruling things out, she’s done a few things including sending me to a Hematologist and getting a chest x-ray done.
Why the visit to the Hematologist? Well, my blood is basically fucked. For the last year (or more) my white cells have been at 17,000 (high is apparently considered anything over 10,000). In addition to that, my inflammatory markers are bordering off the charts. From what I understand, anything over 3 is high. To give you a point of reference to where mine are, when I tested in November I was at 34; and when I tested in January I was at 17. So…as I was saying, my blood is fucked. And rather than just throwing me on some anti-inflammatory medication (that I can’t take anyways, because of the whole trying to get pregnant thing), the doctors are actually trying to figure out WHY my body is reacting the way it is.
Anyhow, I went to the Hematologist (whose other specialty is oncology). As he was taking my medical history, he made note of the history of colon cancer on my father’s side of the family (we have familial polyposis in the family – which I didn’t know until AFTER this appointment). He asked me when I had been tested last, and my response was “never”. I explained to him that my father had never had issues with his testing, but had some pre-cancerous polyps removed this last visit (although that is common as you get older). I told him I’d been asking my primary care physician if I should be tested – at the insistence of my father – for several years now, and that my PCP indicated that I was young, even for early detection.
The Hematologist just shook his head and advised me that was wrong.
He stated that I absolutely should be tested, and that I should have started five to ten years prior. (Uh, great!). He told me that he would be forwarding my information to a gastrointologist, and that they would be in touch to schedule an appointment. He then proceeded to take more blood for additional testing, and indicated that if he didn’t see anything strange, we would move forward with a full body CAT scan. (I should probably note that I really liked this doctor).
Anyhow, the very next day the gastrointologist called and scheduled my appointment for last Friday. I went, gave him my history, he indicated he’d spoken with my Hematologist, and told me in no uncertain terms that I needed to have an colonoscopy done, and encouraged an endoscopy as well given my history and the fact that I was iron deficient (which is apparently common in women). He was very nice – and while he told me he wouldn’t tell me what to do, did encourage me to have the testing done before I got pregnant as it may be detrimental to wait an extended time for the testing.
However, this meant that I would not be able to attempt to conceive this month, because they cannot do the exam (or more accurately the sedation required) if I am, or may be, pregnant).
I told the doctor I was fine to do the testing (I mean, what is one month, really), and when he told me I had a good attitude about it, all I could think was “WELL, YOU WANT TO TEST ME FOR CANCER IT SEEMS REASONABLE GIVEN ALL THE FACTS”. But nonetheless, I was very disappointed and upset. No matter how many times I told myself it would be fine, I knew that I didn’t feel that was true.
To make matters worse (or better, depending on the angle you are looking at it), I went that morning to have a chest x-ray. That afternoon I got a call from the Rhumetologist’s office asking if I was coughing or had a fever – because they found abnormalities in the chest X-ray and wanted to rule out the possibility of pneumonia. But that also means that there is a possible diagnosis of sarcoidosis, and the likelihood that I will be required to have a CAT scan done. Which may mean that I am asked to stop trying to conceive for an additional month while they do the testing.
The triple whammy comes when I looked up treatment options for sarcoidosis. They consist of heavy steroid treatments, which are ALSO not pregnancy friendly. Which would mean that I would have to opt to put off treatment or opt to hold off trying to conceive while undergoing treatment.
On the one hand, I am thrilled that we seem to have some forward momentum with the problems I have been having over the past two years. On the other, I am concerned, sad and upset that I have place my conception plans on hold for an unknown period of time. I’m going on thirty six. Time is something I don’t have an infinite supply of if I want to conceive. I know that it’s not completely out the door as I get older, but I do know that it gets harder and there are more risks.
It seems right now I am in a holding pattern. Hopefully I can get all these tests done, and perhaps any treatment done, in this month so that we can try again next month. I am very apprehensive about the testing the are doing on the 27th. I am unsure what to think of it, or how I will react if the results are unfavorable. I’m mostly trying not to think about it (and pretty much failing). On the other hand, if they can finally figure out what is wrong with me, that is amazing as well.
For now, what that means for me, is that I need to engage in some activities that take my mind off of things and that occupy my time so that it moves quickly. Hopefully this is just a brief intermission.