The irony of the situation doesn’t elude me. The doctors are worried I have a blood clotting disorder, so they take me off the prescription that will keep me from getting clots in order to test me for said disorder.
Well I guess I understand that they want to be thorough. My initial tests in 2010 were positive but it usually takes 2 positives tests to get a diagnosis. The second, while positive, was unfortunately performed after my DVT had been found and I was already on Coumadin.
This THIRD round of tests was not much more conclusive – a few of the larger test lupus anti-coagulant and the venom test came back negative (both were positive at my initial testing). But one – IgG protein – was through the roof. The hematologist actually commented that it was one of the highest results he had ever seen. So because of this result and the fact that I had had an unprovoked DVT in past meant it was back on Coumadin for me.
All of this testing and retesting has left me a little more aware at how hard it can actually be to get diagnosed. Many times people who go to the doctors complaining of joint pain, fatigue, facial rashes etc can spend years and thousands of dollars trying to find a diagnosis to their ailments. I was lucky the first go around. Since I went to a rheumy in the middle of a flare, they were able to properly test me for several possibilities. But the blood disorder has been a little trickier – if I hadn’t been aware of my body and about the changes in my legs, no one may have ever caught my blood clot. I didn’t present with overtly classic DVT symptoms – my legs swelled, but very gradually and I never had any bruised or hot spot on my leg. I did the research and voiced my concerns – even when the doctors seemed incredulous. It paid off – the DVT was found before it caused lasting or severe damage.
Am I happy that I have to be on Coumadin for the rest of my life – no. There goes the tattoo that I wanted to get… but I’ll survive without it. Being on Coumadin also gives me a peace of mind, yes – I have to be more careful of my surrounding (which is hard for a klutz like me) but knowing my blood is thinned keeps me from worrying (too much) about every little pain.
It’s been a long time since the last time I posted. Not that everything was roses, but it’s partially because I was feeling better!
I know ! It’s hard to believe that after dealing with so many problems for so long that I was able to actually feel good about myself. If only for a short while. So while I don’t like using this website to bitch about how crappy I feel , I’m coming back to it because there have been some new developments. Yes, I’ve had many more symptoms recently than I have had in the last 6-8 months but I’m hoping to keep this blog going after the symptoms begin to subside again <knocks on wood>
So at the beginning of the year my rheumy finally convinced me to go see a hematologist. Because of my Antiphospholipid Syndrome, I probably should have gone long ago but for some reason I put it off. But my rheumy had been on a mission to get me taken off Coumadin. According to her, she felt uncomfortable leaving someone my age on blood thinners for the rest of my life…. So instead of taking me off them outright I suggested (and she agreed) that I see a hematologist to get an opinion about my Bloooood!!
Here’s where it gets complicated. In order to check my blood for the problems that the Coumadin treats (in my case blood clots from Antiphospholipid Syndrome) I have to be taken OFF Coumadin. So for the month of January I was blood thinner free and on a nightly regimen of aspirin.
The month was stressful and painful. Fortunately I didn’t have another blood clot form while off the Coumadin but pain that I hadn’t had in months came back with a vengeance. Most people look at me strangely when I say that my veins hurt – but I don’t have any other way to describe it. I noticed a dramatic increase in the pain in the back of my calf and in my hip area (areas that I have had problems with before). While it’s hard to describe to someone who has never had a clot, it reminds me of a the pressure you feel when your leg has fallen asleep and you are trying to wake it up / that mixed with an intense pressure.
More to follow…
Well it’s that time of year that I get super busy. Christmas, Thanksgiving, Finals … So what do I do? I forget to take my meds.
I’ve been on Coumadin for over a year now and within the last month I’ve managed to forget to take two doses.
Last night my problem was how tired I was. I fell asleep on my couch at 9:00, woke up at 1 and went to bed. All good right? Not when I normally take my meds at 10. So to today I’ve been battling a headache. I don’t doubt that it’s because of my missing doses…
After reading another blog entry about Lupus (a man wishing his wife, suffering from lupus, a happy birthday), I found this link to her research.
If you suffer from Lupus, please take 10 minutes to fill it out. Research is worth it!
So be amazed. I’ve wanted to start a blog for a long time – and I’ve actually started many of them… I just unfortunately forgot to write or do anything with them. So ladies and gents – it amazes me that I have the ability to remember to do this one… For now.
So the exercising/ trying to be healthier continues and yes, my legs and abs are STILL sore. I’m weak – there’s no denying that. But in spite of the pain I’ve managed to go swimming last night and get a little strength training into today. Yeah I’ll say it – woohoo for me!
But unfortunately my headaches are back and in my experience that usually means my INR has gone back down. So I get checked Friday… Does introducing a new workout and diet (just watching calories) change the way the coumadin is metabolized? I’ll try to look that up and find the answer.
Also, back to visit my rheumy this next week for my regular visit – more vampires, oh goodie.