Recently I’ve been thinking about my first flare and whether there were any signs or some kind of signal that could have foretold the pain that I was soon going to be in.
Pretty sure a flare feels exactly like being trampled by a T-Rex.
And I’m starting to think that (for me mind you) my immune system whacked out much sooner that I initially realized. While I was initially diagnosed with Lupus and APS in the Spring/Early Summer of 2010, my joints and legs had been painful since the very beginning of January. I waited several months before seeing a doctor about my joints for two reason; fear of what they would tell me and a lack of insurance.
Looking back, I think my immune system might have been trying to tell me something was wrong much earlier than that. The Spring/Summer before my diagnosis I had was dealing with a horrible bout of multiple UTIs AND yeast infections. Within a 5 to 6 month period was treated for 5 UTIs and 2 yeast infections.
Now maybe you’re thinking – “So what? I’ve had a yeast infection before” – but I had NEVER had either of these two things. A 24 year who suddenly has multiple UTIs and yeast infections with no history of it before then. It was weird. Not only that – the medicine didn’t seem to work. I went through several different antibiotics in an attempt to find the one that would kill the germs. A few months after I got those issues under control, I was hit with the fatigue. At the time I didn’t think much about it. I had just graduated from graduate school and was searching for a full time position while working at a local store. I was busy and thought it was just stress. But it got worse. To the point where I would come home and beg my boyfriend at the time to just go to bed instead of going out (my exhaustion eventually caused the boyfriend and I to break up (among other things), thank god). And by the end of the winter and I was in a full blown flare.
Hindsight is 20/20 – at the time, I had no idea that all these crazy things happen might be related to each other (technically, I still don’t but it makes sense to me). Skip forward a few years, and low and behold – it’s happening again. This Spring/Summer I’ve been dealing with multiple sinus and ear infections (and multiple antibiotics) and now soul crushing fatigue (and oddly enough, insomnia). Maybe I’m wrong. Hell, I HOPE I’m wrong. I don’t want to go through the pain of another full blown flare – mini flares are bad enough.
I don’t know if you can call this a Lupus related post or not. Last week my husband and I got to go on vacation!! And we chose …. New York City! It had been ages since I had visited and my husband hadn’t been since he was 9!
We did some tourist stuff… Walked around Times Square. But mostly we played it easy.
The Cloisters were beautiful on a rainy Tuesday morning.
But the second day we were there I started to develop a sore throat and stuffy ears. I blamed it on the wind at first and then allergies. It was annoying but not debilitating and I let it go.
Let me tell you flying with aching ears is a bit€h.
When we got home I saw the doctor – got allergy meds – got worse – saw another doctor – got antibiotics. Doc decided that whatever it started out as it had progressed to my lungs and was the start of bronchitis. I was told to take meds and stay home for two days.
And here is where my conscience kicked it. I’m Midwestern – missing work is a horrible thing! While I had gone to work Monday – I took Tuesday off to go to the doctor and then rest. When the doctor told me to take another day off I panicked. I had just gotten back from vacation! I had already missed over a week of work and I had an important assignment due on Wednesday! I COULDN’T MISS WORK!
So I went to work. Against doctors orders.
I had gotten the assignment done around lunch and thought about cutting out early to go home and rest but I figured I was already there no use in leaving early. So I stayed. Mistake.
Wednesday night my cough kicked back in with vengeance and my ears (which had gotten significantly better since New York) started hurting all over again. So here I am – Thursday – missing another day of work because I didn’t listen to my doctor.
In some ways this does tie in with Lupus. Many others out there have the same problem missing work as I do – they feel lazy or like they are slacking off when their health means they have to take a time-out. Maybe even co- workers make fun of you for missing days. Ignore them- do what’s best for your health. If you have sick days – use them if you need to, don’t hoard them.
It’s advice I’m trying to take myself.
Well after a year of living in my house we have finally started remodeling the basement/laundry room. Thanks to my SO, who finally got the ball rolling for us! He has much more experience in construction – so what I didn’t feel comfortable doing, he took the lead in.
He got the ball rolling this Saturday while I was in class. I came home to a laundry room freshly stripped of almost all of its drywall. But since we were going to movies that night, we called it a day and decided to finish cleaning and trashing the drywall on Sunday.
After a day of hauling drywall, sweeping and pulling out screws, the place is almost ready. After we seal the concrete (and then wait for a big storm, to check for leaks) more drywall will go up in its place.
But of course I can’t get through construction with out trying to kill myself. In an attempt to keep the dogs out of the way we put up a baby gate. One that I promptly tripped and fell over. That, in addition to loads drywall being hauled up stairs. My left leg looks battered.
In addition, all of Monday felt like a fog. It was almost as if I was underwater. Did I over do it? It was hot and humid on Sunday but not overly so… Does anyone out there have any information on bruising and APS? Does the presence of bruises increase the likelihood of a clot?
Wowie, it’s been a long time since I’ve posted anything. Needless to say life has been pretty good. Minimal amount of pain (joint related anyway). I did have a small bout with kidney stones which the doctor associated with the large amount of Vitamin D I had been taking. I wouldn’t wish those things on my worst enemy.
But the last week or so the joint pain is back – it almost feels like I’ve stopped taking my Plaquenil all together (but of course I didn’t, I’m not that stupid). And joining the pain, the constant need to sleep. I feel lazy but my body just doesn’t want to wake up. Which is unfortunate because the end of the semester is upon us and I have several larger assignments due in about a week.
Time to buckle down. You can sleep when you’re dead – or at the very least after the classes are finished.
After a week of pain, battling the pharmacy and in the end, my rheumy. I’m finally back on Plaquinel. And fortunately it’s working again – I can’t believe that I went from pain-free to severe joint pain in such a short time. Lesson learned. No more taking chances with my meds.
That pretty much describes how I felt most of the day. I found out today not only had my rheumy not been receiving the faxes from my pharmacy but when they finally did get the request they declined to refill it. WHaT?!
Yeah – my rheumy decided that since I hadn’t been able to get my yearly eye check up that I shouldn’t be able to refill my Plaquenil – they only medicine that rids me of the inflammatory arthritis. And thus condemning me to severe pain until I was able to visit my eye doctor. All of this for the off chance that the Plaqenil might be damaging my eyes. Surprising to me since my first rheumy said that it is a very, very rare side effect and most likely not something that would happen… So because of this rare chance, I should be completely taken off my lupus meds? I think it’s a stupid decision. Do they think I’m refusing to get the exam? I have it scheduled – just not apparently soon enough for my rheumy.
Things this last month have a b*tch. But hey, my birthday is in less than two weeks. So things have to get better – right?
(On a more positive note: several of the dogs that we photographed this last week were adopted! It looks like the fancy shelter photos might be helping – we are going to have to go back for more pictures soon)
Well, my “experiment” has quickly gone awry. After a day and a half with no Plaquenil my severe joint pain has come back. A part of me was curious if it was helping or if I had just gotten better (somewhere along the line hoping that the lupus diagnosis was incorrect)… But now that the pain is back with a vengeance (despite being in a laboratory confirmed “remission”) I realize that I DID feel better because of the medicine and that I DO need them.
I’m not one who likes to be on medicine – especially medicine I’m not sure I need. It’s just the way I was raised – my mother is the same way- when I was young and I had a headache, I would go as long as possible with pain medication hoping that it would clear up on it’s own. So being dependent on medication now is difficult for me.
And even more distressing – what if Plaquenil should ever stop working for me? What then?