So the Clinic never did call me back... so I called them again a couple days ago. They told me to go see the local doctor, who I refer to as the Witch Doctor because she's rather rude. But whatever, went to see the Witch Doctor, she prescribed some antibiotics for me and told me to go give a blood and urine sample. I thought she might do that, though, so I fasted before my appointment just in case. That went as well as can be expected when it comes to surprise blood tests.
Got my antibiotics from the pharmacy... they're freaking HUGE. At least two or three times the size of a normal gel capsule. They're Gryffindor colours, though, which is amusing. I have to take one every six hours for five days. Blargh.
I mentioned this site and blog in a thread on Solia, so if there are any Solians reading this, hello! Sorry for all the health talk.
In other news, I have "Under African Skies" by Paul Simon stuck in my head.
Toodles!
Been feeling sick lately and noticed something a little worrisome. Called the doctor last Tuesday and left a message, but do you think they've called me back? Hmph. You're a NEPHROLOGY clinic, I'm not going to be phoning about about a damn SPLINTER here!
So whatever, guess I'll just have to call them back tomorrow, along with the University.
I really hate using the phone when there are other people in the house. Anyone else like this at all?
Fantastic news from the doctor yesterday.
My kidneys are functioning the best they have since March. Most of my blood test results were written in happy, black ink, not bad, red ink.
AND.
THIS IS THE BEST PART.
ARE YOU READY?
The doctor said that at the 18 month mark, we're going to try taking me off my medication.
ALL of my medication.
Even the stuff that was supposed to be permanent.
Do you know what this means?
If it works, I will be able to have children after all.
Best doctor's appointment ever.
Well, yesterday certainly was interesting. Hello, emo Jenn! Yeesh. Sorry about that, guys.
Anyway, today I have my doctor's appointment. My dad and I are going to go for lunch at Perkins first, so that's exciting. I do love Perkins.
Hopefully this appointment will be quick and relatively painless. I hate the damn blood pressure cuff, but it's over quickly enough.
Shall I make some med-changing predictions? I think they're going to increase my Ramipril to 15mg/day, I think they might decrease my Prednisone to 5mg/day if I'm lucky, and I think they'll let me keep my Furosemide at 60mg/day. CellCept they'll obviously leave alone.
Will update when I get home!
More and more frequently I'm finding myself irritable.
I want to scream and cry and break things. I want to lash out at anyone who talks to me. I want to control every aspect of my life, and if I can't then I become upset.
I feel so angry.
Nobody I've talked to understands. My mother listens to what I say then goes on to tell me stories about her own life. That's not what I need. My dad has enough to worry about. My doctor tells me about all the other people who have it much worse than I do. My friends don't want to be around me anymore, and I don't really want to be around them either.
I can't stop thinking about where my life would be if all this hadn't happened.
I can't stop thinking about what a waste of oxygen I am right now.
I don't feel excited or happy about any of my options regarding future plans.
I don't know what I want, besides for this to have all been a long, terrible dream.
Along the same lines as yesterday's post... I will never have children of my own. Even if I never have to take the kidney meds that will make me infertile, the info packet with the substitute meds says that I can not be pregnant and on the meds at the same time. And, seeing as those meds are maintaining kidney function... yeah. Don't see the doctor taking me off of them any time soon.
The common response when I mention this to anyone is that I can always adopt.
Not so much. They require a medical report before they'll allow you to adopt a child. Pretty sure I would fail that.
So, yep. Some more of that harsh reality - I will most likely never be a mother.
This is not something I want to have to think about at nineteen. Ugh.
Every once in a while I have to remind myself that I'm never going to be the same as I was before the vasculitis.
I keep catching myself thinking things like, "As soon as my feet aren't swollen, I will start exercising again" "Once I can breathe properly, I can start going out again" "Once I lose all this water weight I can wear real clothes and socialize like I used to"
It's difficult to remember that these things are probably not going to go away. Waiting for my body to sort itself out is silly, because my body isn't going to sort itself out.
I find myself getting frustrated with people who ask me if I'm feeling better or if I'm still sick. But how can I possibly blame them, when I consistently forget, myself?
It's a difficult concept to wrap my mind around - I'm never going to be better. I will always be sick. I will always have limitations on what I can do, on what my body can handle. I just have to find a way to work around these limitations - or through them.
I refuse to become like my mother. I will not hide from the world for so long, like she has.
It's going to be very hard. It's humiliating to go out in public like this - grotesquely huge, bright red stretch marks everywhere, skin and hair in horrible shape... and I pant and wheeze after walking only a short distance. All of this is because of either the disease or the medication, but who is going to believe me? All they see is an ugly, obese young woman who is panting like she hasn't moved in months.
I should get a t-shirt or something made up. "THIS WAS NOT MY FAULT". Ha.
Well that was certainly unexpected! As you may or may not have noticed, I disappeared off the face of this website for a little while there. So sorry!
"But why, Jenn? Why would you abandon us?!" you cry. "Surely we mean more to you than that!"
Well, dearest reader, you do. You mean more to me than you will ever know, and it was not my intention to abandon you for so long! Unfortunately, my vasculitis does not care about you as much as I do, and it decided to be a jackass and knock me flat on my back for a month and a half. Then there was the obligatory "Holy shit I can finally move again" stage, where I avoided the computer entirely... and now things are getting back to normal.
At least, as normal as things can get around here.
So, briefly, let's cover what has happened over the past couple of months, shall we?
One of my cats died - Bailey. The really fat, grey one? Yeah. She had been breathing heavily for a couple of days, so we made an appointment at the vet. Dad took her up there, got her out of the carrier and on the examining table, where she promptly had a heart attack and died. Not really shocking, because she was quite scared and obese, but she was only eight years old.
Now, you would think that after an event such as this, my mother would stop feeding the cats human food. But, no. She is still giving them bowls full of milk and huge chunks of the processed deli meats and spoonfuls of yoghurt and ice cream or whatever else she has laying around.
It makes me so furious.
You know what else makes me furious about my mother? Her cigarettes. I don't even care anymore that she's smoking them. Fine, whatever, kill yourself with your cancer sticks if that's what you really want - but don't make me breathe your nasty second-hand smoke. Especially when my vasculitis is making it difficult enough for me to breathe as it is.
Anyway. I am trying to avoid my mother as much as possible, because I am so furious with her that I know I won't be able to hold my tongue if I have to talk to her. And I am trying to avoid a fight, but I can't help but feel like a petulant teenager. What do "real" adults do in situations where they know they cannot keep control of themselves if they are forced to interact with a certain individual?
On a happier note - hello, healthier lifestyle! I recently joined SparkPeople (link opens in new window), and have radically changed my diet and exercise habits. Not seeing any astounding results yet, but that isn't going to stop me. I've been feeling so much better that it doesn't even matter if I lose the weight - though I'm not saying it wouldn't be nice! My main problem at the moment is that I seem to be retaining water like crazy. The doctor has me on Furosemide, which took off 10lbs right off the bat but now seems to be plateauing, and my feet are still swollen to the point where they haven't been able to fit in shoes for about a month now. We upped my dosage the other day, though, so perhaps I will see some progress!
I have set a goal for myself of moving into an apartment in the city by this time next year. This means that I will have to obtain some sort of job fairly soon - I'm going to keep an eye out now and if I don't happen to stumble on to something I will start seriously hunting at the end of August/beginning of September, when everyone else at my age and skill level is going back to school and ditching their summer jobs. Also, I might take an Intro to Business course starting in February to get some useful skills, so that I can get a higher-paying job and actually afford to pay rent on an apartment.
This vasculitis is really going to screw me over in the long run - CellCept is expensive! I'm going to talk to my doctor at my next appointment about that. It isn't an issue right now, because I'm covered under my Dad's medical plan for work, but that runs out when I hit 21 or am no longer his dependant. Pharmacare is GREAT, but working full time at $9, my deductible would be somewhere in the region of $600 annually, which is money I would have to pull from elsewhere.
I don't care what I have to do, though - I just can't live with my mother much longer. I'm not even sure how I'll survive this winter. If I were to somehow luck on to a decent job this fall, I think I would try to move out even sooner.
Anyway, in the meantime I am focused on making myself healthy (or at least healthier!), and on getting myself out and about in the community as much as possible. I am sick of being a hermit, and I find that I have less and less in common with high school friends as the days go by. I want to cultivate my interests, I want to meet like-minded people... I want to sit in a park and watch the world go by.
I do not want to update my resume, but I suppose that should go on my to-do list. Blargh.
Have a fantastic day, and remember to smile!
Woke up late again today. This is not a good thing. I mean, yes, it's nice to sleep in, but not this much!
Ha. I remember when waking up at 11 was way too early. What's sad is that it was less than three months ago that this was the case. It's crazy how quickly things can change!
Anyway, woke up late, like I said. Had open-faced egg mcmuffins for breakfast - delicious! Did pretty much shit-all between breakfast and lunch... read some Firefly fanfiction. Firefly seems to have become my latest mini-obsession. There is some really good fiction out there, and there are some very talented writers. I don't know if I like the tendancy to focus on River, though. I suppose she is the most interesting character in the fandom in that she is the most bizarre, but I find her boring. She's too predictable. I can't relate to her.
Also, "River" is a dumb name. Sorry. It's right up there with "Apple".
You may recall a few days ago, when I mentioned that I've been re-reading The Bell Jar. I am nearly finished with chapter eleven, and I'm a little disturbed by how much I can relate to this novel. I don't particularly want to go into details now, but you can expect a post about this later on, when I've finished the book again.
Played some DDR this afternoon... I thought it would make me feel like shit, but besides being perhaps a bit more difficult than I would have preferred, I feel pretty good. I actually had fun! I'll probably have another go at it tomorrow, I don't want to overdo things and turn myself off of the only tolerable form of exercise I have available when it's this bloody cold outside.
I really need to lose some weight.
I feel so much better now that I know the Prednisone dose is coming down. I know it's entirely psychological, but I can tolerate the side effects much more easily now that I know they will be going away soon.
I can't wait to feel NORMAL again.
Had a doctor's appointment yesterday, and got some great news! My Creatnin number (the Holy Grail, as it were) has apparently gone down to EIGHTY-THREE. YES. THAT IS 83.
This is a big deal.
83 is a normal number for creatnin to be at.
When I was in the hospital, my creatnin was around 140. That was bad.
That this number is going down means that the drugs are working. THANK GOODNESS, because THAT means that I (hopefully) won't have to go on the drug that will make me infertile at nineteen years old. Call me crazy, but I'd like to have the option of starting a family someday.
The doctor said that my bone density scan results were better than average, so he took me off the Actonel (yaaay!) and he's also started taking down the dosage of my Prednisone - in eight weeks I will be down to 10mg/day, as opposed to the 80mg/day I was on yesterday. This makes me SO HAPPY because I hate the side effects of the Prednisone.
Things are looking up, health-wise!
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