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…
Hey! It’s been a long time since I’ve posted anything… Here’s why-
This last spring was my last semester. So I can finally say that I have two masters degrees. This one in Library Sciences and the first in Art History. After I first got sick, I got really depressed. I was sure that I was never going to be able to enjoy a full life – no marriage, no job, no prospects.
But I’m stubborn – so the first thing I did was want to prove my own depression wrong. I’ve always loved libraries and before I went to get my Art History degree, I had considered getting a library degree. I choose not to because I wanted to leave my hometown (there is a good library school in my hometown).
So to back to the story – to prove myself wrong I decided to go back to grad school. And this time not only did I go to school full time but I also worked full time. SUCK IT LUPUS.
Not the only thing left to accomplish is to find a job. Unfortunately that is going to be the hardest part. My SO has s very good job where we are at so I have to limit my search to a certain area.
Oh well – one more goal!
Well its been a long time since I’ve had to write this but…. I’m in a flare. Some times I talk about flare as though I can’t tell, or maybe I’m unsure whether or not it’s just the flu or something. Well this one I am positive. My joints haven’t been this swollen since I was first diagnosed. That, along with the swelling in my legs – it has been kind of a bad last few weeks. At first I was ok to blame the weather, living in Kansas means you have deal with the crazy bi-polar weather. Yesterday it was sunny and 75… but oh look there is a tornado watch this morning followed by thunder snow and a possible blizzard. *sigh* Not good for someone with joint problems.
But after several weeks of these symptoms I feel comfortable in saying – it’s not just the weather. I’m in a flare.
Heading to the Rheumy in a few weeks – the soonest I can get my crazy schedule and her appointment calendar to mesh – but in the meantime, it’s lots of rest and keeping my feet elevated. I’m not really concerned about the joint pain… it’s painful, but Lupus joint pain usually isn’t damaging to the joints. Inflammation and pain, yes. Lasting damage to the joints, No. I’m more concerned with the swollen legs – they been swollen for a couple weeks pretty consistently (raising the eases the pain of the swelling, but usually by the end of the day it is back). I’m worried that this might be a signal that I’m have blood clotting issues again.
Welp I finally gave up and went to the doctor. Seems as though I have a sinus infection that then aggravated a ear infection. So blah. I’ve been on antibiotics and anti dizzy meds (since Friday) but so far it doesn’t seemed to have help.
Also my other little “experiment” is finished – although the pain didn’t come back with a vengeance like it did last time, this time it slowly crept up on me.
Also I have a questions to put out there – I’ve been taking Celexa – to help with my anxiety. But I’m worried that it is the reason I’ve gained weight. I’ve recently begun to train for a 5k and while I’m watching my calories and running 3-4 times a week. I haven’t lost a single pound. Could the Celexa be the culprit AND if so does anyone have experience with Wellbutrin- I’ve read that it doesn’t have the same types of side effects that SSRI’s have!
Any help you can give would be very appreciated!
. Since last Wednesday, I’ve had often and on bouts of dizziness and vertigo. I have no idea what it could be…. It has actually been more of a nuisance than anything, yesterday was actually worrying. I got so dizzy that at times I thought I was going to have to lay down… while I was at work. AND to top it all off, driving seemed to be hazardous. Today has been better, although the dizziness isn’t completely gone it is back to just being annoying.
Also – bad time I know, since I’m battling the dizziness – but I’ve decided to see what I would feel like off the Plaquenil. I KNOW, I KNOW. Right now I am on two 200 mg doses of Plaquenil daily and I am not having any pain in my joints. I want to see if that is because of the medicine or if perhaps JUST MAYBE, I’ve gotten better. I know it’s wishful thinking but I would like to not be dependent on medication for the rest of my life and if I do get better how will I know if I’m on a meds?!
So today is technically day three without my Plaquenil and I’ve noticed some possible stiffening of my joints but so far no pain.
So Wednesday night, into Thursday we had a large winter storm move through. It dropped about 10-12 inches of snow in our area. Classes (and in my case, work) was cancelled because of all the accumulation. But it seems like we are going to get hit again. I live right in that area that’s marked 12-14 inches. I like snow but bloody hell – I think the last round was enough. I’m starting to get cabin fever and if they cancel class/work again I’m going to go mad!!!