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 the last few days have been interesting. My fiancé has been sick as a dog with what we came to find out was “influenza type A” and at the same time we were hit what has been the most snow this season.
Wednesday night in preparation for the storm I went and got a few grocery essentials – bread, meat… My favorite wine ( I know, I know -I’m on Coumadin and a shouldn’t be drinking. But I never have more than one glass.) Well, we wake up on Thursday and not only is there about a foot of snow on the ground but the fiancé is feeling even worse. I decide that it is time for the doctors – fortunately we found one that was still open. We are lucky we only live a few blocks from the doctors offices and hospital because the snow was so bad that we barely made it out of the driveway! But we did make it and his test came back positive for the flu. Tamiflu and rest were prescribed. Back home I get him in bed – then he starts doing something terrifying – he starts hallucinating and talking crazy. He fever must have peaked. After calming him down, I get cool rags and fans to start to bring his temperature down. The fever broke sometime last night and now he’s feeling much better but exhausted.
Although I got a flu shot this season I’m not feeling too woopie right now – battling a headache and leg cramps …. Leg cramps are probably from overdoing the shoveling today. Hopefully the flu shot will do its job and protect me bug.
Hope everyone out there is staying healthy too.