So, I still haven't given you my whole play by play, but I have news from the doc...
There's protein in my urine. It CAN be a sign of kidney involvement, and I'm worried that I should be worrying haha. I did my blood work today, and I guess I won't know anything more until all the results are put together.
In other news, we're increasing my MTX. I'm now going to be on 20 mg a week. I seem to break out weekly, around Thursday or so, and then it starts to go away on Sunday when I take my MTX. So, we're hoping that maybe an increase in meds kinda lasts longer.
Wednesday, May 13, 2009
Monday, April 20, 2009
Jumping out of sequence here a bit
I'm having a bad week. This is a "present time" post, and not a "history" post, even though I haven't exactly brought this up to the present yet. But, I made this blog so that I could post these things, "journal" them, if you will, when they happened. I kind of want it to be a healing ground for myself and anyone else in a similar situation.
For starters, the methotrexate (forever hereafter, I'll refer to it as MTX) is making me sick, STILL, after almost 10 weeks.
I'm breaking out in spots again. It looks like I have smallpox.
I have a headache, probably from whatever the heck is going on with me this week.
Did I mention I'm nauseated as hell?
My legs started sreaking out Saturday after a nature trip with my family. Sunday I had to wear hose (to cover my spots so that my congregatoin doesn't shun me as a leper), which only aggravated my spots. Today I had a mandatory class at work, "Managing the Agressive Patient," loads of fun. But sitting in a chair for 4 hours with my feet dangling, only contributed to my delightful collection of ugly spots. And, my 11 yo forgot to tell my 17 yo to come get me, so I walked almost the whole way home, which REALLY made things worse.
I'm supposed to go to work tomorrow for 12 hours. I can't call in. I missed a whopping 2 days in my first 90 days of employment, both doctor excused, both related to a vasculitis flare. I was strongly encouraged to watch my "absenteeism" until my next evaluation. Oh, and I don't have a phone right now to call in with anyway.
I feel hopeless. Utterly despairing. I can't even have a good cry (I frown on crying, but SOMETIMES...) because I have a migraine. Is there anyone out there that gets me?
For starters, the methotrexate (forever hereafter, I'll refer to it as MTX) is making me sick, STILL, after almost 10 weeks.
I'm breaking out in spots again. It looks like I have smallpox.
I have a headache, probably from whatever the heck is going on with me this week.
Did I mention I'm nauseated as hell?
My legs started sreaking out Saturday after a nature trip with my family. Sunday I had to wear hose (to cover my spots so that my congregatoin doesn't shun me as a leper), which only aggravated my spots. Today I had a mandatory class at work, "Managing the Agressive Patient," loads of fun. But sitting in a chair for 4 hours with my feet dangling, only contributed to my delightful collection of ugly spots. And, my 11 yo forgot to tell my 17 yo to come get me, so I walked almost the whole way home, which REALLY made things worse.
I'm supposed to go to work tomorrow for 12 hours. I can't call in. I missed a whopping 2 days in my first 90 days of employment, both doctor excused, both related to a vasculitis flare. I was strongly encouraged to watch my "absenteeism" until my next evaluation. Oh, and I don't have a phone right now to call in with anyway.
I feel hopeless. Utterly despairing. I can't even have a good cry (I frown on crying, but SOMETIMES...) because I have a migraine. Is there anyone out there that gets me?
Monday, April 6, 2009
Found a new Primary care Doc
So, I talked with some docs and nurses that night at work, and they recommended me to a doc at, of all places, a urgent care clinic. I was leery at first, but trusted these guys' judgement. So, I saw Dr. S. He did all kinds of lab work, a skin biopsy, an EKG, and a chest xray; and told me to follow up in about 2 weeks. Other than the trip to my ER doc, this was the most thorough exam I had been given.
I ended up going back in about 1 1/2 weeks, because I was too thoroughly miserable to wait any longer. Dr. S was shocked at the advancement in my symptoms. He had my results back, but nothing was exceedingly conclusive. At this point, he felt there was definitely somethign wrong with me, and gave me the tentative diagnosis of HSP vasculitis, although he also told me he would have to send me to a specialist, because I had surpassed the level of care he could give.
The clinic made all the arrangements necessary, and sent me over to a Dermatologist (it would be a year before I'd understand the rationale there). She did 2 more skin biopsies, for 2 different tests, and started me on a medication called Dapsone. I read up on it before I picked it up from the pharmacy. Much to my dismay, it is a drug used to treat skin infections in people with AIDS. Great, that would be fun to pick up from the pharmacy. Especially since I looked like I had leprosy, at worst; smallpox at best.
The short version of this event is that it did work, kinda, for several months. The joint pains lessened, the rash pretty much went away (although it would flare frequently and we'd increase my "AIDS" medicine.
In June, we moved to Colorado, and things changed again....
I ended up going back in about 1 1/2 weeks, because I was too thoroughly miserable to wait any longer. Dr. S was shocked at the advancement in my symptoms. He had my results back, but nothing was exceedingly conclusive. At this point, he felt there was definitely somethign wrong with me, and gave me the tentative diagnosis of HSP vasculitis, although he also told me he would have to send me to a specialist, because I had surpassed the level of care he could give.
The clinic made all the arrangements necessary, and sent me over to a Dermatologist (it would be a year before I'd understand the rationale there). She did 2 more skin biopsies, for 2 different tests, and started me on a medication called Dapsone. I read up on it before I picked it up from the pharmacy. Much to my dismay, it is a drug used to treat skin infections in people with AIDS. Great, that would be fun to pick up from the pharmacy. Especially since I looked like I had leprosy, at worst; smallpox at best.
The short version of this event is that it did work, kinda, for several months. The joint pains lessened, the rash pretty much went away (although it would flare frequently and we'd increase my "AIDS" medicine.
In June, we moved to Colorado, and things changed again....
Saturday, March 21, 2009
So, the plot thickens....
I had started running. It is easier for me to run in the winter for a few reasons. The hugest one is that I HATE to sweat. Seriously, it just freaks me out. Also, I have some asthma struggles, and seem to do better in cooler (but not COLD) air. And, finally, I don't really like wearing cold weather gear, I feel like I'm being smothered. So, if I go running and don't need all that, I can go out, get some sunshine and fresh air, but not feel like Ralphie in A Christmas Story.
I had just gotten to where I was doing 2 miles a day of straight running; which is huge for me. The day I decided to bump it up to 5, was the most beautiful January day ever. I made it barely one mile before I started experiencing the most crushing, squeezing pain in my chest. Working in the ER, I knew what kinds of chest pain were benign and what ones to worry about. Of course, there's always that huge chunk of female population with an atypical heart attack presentation.... I pulled my MP3 player out of the pouch around my neck and looked at my reflection in it. My coloring was good, my heart rate was pretty quickly getting back to a normal level. I decided to walk the rest of the way home and just tough it out. MOstly, I didn't want to bare my chest for an EKG unless I was SURE I was dying.
I decided to jog the next day, just a mile, so that I was still working, but taking it easier. I made it to the end of the street.
A week later, my Prednisone pack almost gone, I decided to try again. I made it about a mile this time, when my legs instantly felt like they had been lit on fire. I stopped, and pulled up the legs of my running tights. My capillaries were breaking again, but not in any sort of previous pattern. IN stead of small pinpricks, the spots were about the size of the tip of my pinky finger, red, and mean looking. They looked like 5-10 mm blood blisters (which I suppose is actually pretty close to what they are). I had my cell on me, and immediately called Hoover Clinic. The doctor I had seen brushed me off, muttered something about time, reminding me that he had stated that this could last 8-12 weeks, that he was SURE the prednisone had taken care of it, and to basically just quit my worrying.
I went home, elevated my legs, and decided to ask around at work for a rrecommendation of a new clinic.
I had just gotten to where I was doing 2 miles a day of straight running; which is huge for me. The day I decided to bump it up to 5, was the most beautiful January day ever. I made it barely one mile before I started experiencing the most crushing, squeezing pain in my chest. Working in the ER, I knew what kinds of chest pain were benign and what ones to worry about. Of course, there's always that huge chunk of female population with an atypical heart attack presentation.... I pulled my MP3 player out of the pouch around my neck and looked at my reflection in it. My coloring was good, my heart rate was pretty quickly getting back to a normal level. I decided to walk the rest of the way home and just tough it out. MOstly, I didn't want to bare my chest for an EKG unless I was SURE I was dying.
I decided to jog the next day, just a mile, so that I was still working, but taking it easier. I made it to the end of the street.
A week later, my Prednisone pack almost gone, I decided to try again. I made it about a mile this time, when my legs instantly felt like they had been lit on fire. I stopped, and pulled up the legs of my running tights. My capillaries were breaking again, but not in any sort of previous pattern. IN stead of small pinpricks, the spots were about the size of the tip of my pinky finger, red, and mean looking. They looked like 5-10 mm blood blisters (which I suppose is actually pretty close to what they are). I had my cell on me, and immediately called Hoover Clinic. The doctor I had seen brushed me off, muttered something about time, reminding me that he had stated that this could last 8-12 weeks, that he was SURE the prednisone had taken care of it, and to basically just quit my worrying.
I went home, elevated my legs, and decided to ask around at work for a rrecommendation of a new clinic.
Tuesday, March 17, 2009
My trip to my primary care doctor.
So, we last left off around Christmas, 2007. My ER doc had done bloodwork and prescribed steroids, and admonished me to seek further treatment through my PCP. The insurance we had at that time, I did not have a PCP, but rather a clinic I was assigned to. Unless you made appts several weeks in advance with a specific doctor, you were stuck with whoever had clinic duty that day.
My ER doc had given me 3 days of prednisone at more of a higher-middle dosage, which made a noticible difference within 48 hours. I was to follow-up with Hoover Clinic (not their real name. I chose "hoover" as a pseudonym, because, as with the vacuum brand, they suck.) in 5-7 days. By the 5th day (so 2 days off the prednisone), I was breaking out much worse than I had been when I initially had my ER doc check it out. I went to Hoover Clinic. The doc I saw said it was nothing and that I was over-reacting, but that he'd prescribe me a prednisone taper if it would make me happy. I argued with him, showed him the paperwork from the ER, and even gave him Dr. A's phone number to call. He was still sure it was some kind of trauma (yeah, I FORGOT I had had my legs beaten) or just a fluke. Dumbass. I took the prednisone, in hopes of keeping things kinda under control, just until I could find another doctor.
During this time (meaning, the month of December) I had decided to start running again. I was doing 2-5 miles a day, and really running better than I had since high school. My goal was to do a half marathon the following summer. About a week after the Hoover CLinic visit, I started developing severe chest pain when I ran. And it went downhill from there....
My ER doc had given me 3 days of prednisone at more of a higher-middle dosage, which made a noticible difference within 48 hours. I was to follow-up with Hoover Clinic (not their real name. I chose "hoover" as a pseudonym, because, as with the vacuum brand, they suck.) in 5-7 days. By the 5th day (so 2 days off the prednisone), I was breaking out much worse than I had been when I initially had my ER doc check it out. I went to Hoover Clinic. The doc I saw said it was nothing and that I was over-reacting, but that he'd prescribe me a prednisone taper if it would make me happy. I argued with him, showed him the paperwork from the ER, and even gave him Dr. A's phone number to call. He was still sure it was some kind of trauma (yeah, I FORGOT I had had my legs beaten) or just a fluke. Dumbass. I took the prednisone, in hopes of keeping things kinda under control, just until I could find another doctor.
During this time (meaning, the month of December) I had decided to start running again. I was doing 2-5 miles a day, and really running better than I had since high school. My goal was to do a half marathon the following summer. About a week after the Hoover CLinic visit, I started developing severe chest pain when I ran. And it went downhill from there....
Monday, March 16, 2009
So, here's how it all started
In October-ish 2007, I had some pretty bothersome flaring of my asthma. I was working in the ER at that time and everyone was recommended to get the flu vaccine. I had recently been on high doses of prednisone (a steroid), and opted out of the flu vaccine. Now, before anyone gets too stressed out about it, let me explain myself. I'm leery of the flu vax ANYWAY. I don't like that it's preserved with mercury. I also don't like the idea that it is basically someone's guess as to what strain of flu virus to use. Add in that Prednisone lowers your immune system and that the flu vax is a live virus, and I just decided to be VERY careful around my patients and skip the flu vax. It actually may have ended up saving my life, as the multi-dose vial they used was tainted somehow and several hospital employees ended up having severe allergic reactions. As severe of an allergic history as I have, this may well have been VERY bad for me.
So, fast forward to December. The ER had pretty much stopped seeing patients with postive flu tests. Meaning, nobody was really getting the flu anymore. On Dec 17, I started running a fever (VERY abnormal for me). By the next morning, I had full blown flu. I ended up with INfluenza A (which we hadn't seen in the ER since November, which was also NOT covered in the vax I didn't get. I'd have gotten the flu anyway, even if I'd been vaxed). By the 19th, I was still feeling crummy, and started breaking out in little red dots all over my legs. It's called a petechial rash, and it isn't a rash at all. It's capillaries (small blood vessels) spontaneously breaking just under the surface of the skin.
had one of my ER docs check it out. She explained to me the potential it had to be serious, but said that since all my labs were perfectly normal, she couldn't do much more. She did write me a prescription for prednisone (this almost ALWAYS responds to steroids), and told me it was in my best interests to follow up with my family care doctor.
And so it began.....
So, fast forward to December. The ER had pretty much stopped seeing patients with postive flu tests. Meaning, nobody was really getting the flu anymore. On Dec 17, I started running a fever (VERY abnormal for me). By the next morning, I had full blown flu. I ended up with INfluenza A (which we hadn't seen in the ER since November, which was also NOT covered in the vax I didn't get. I'd have gotten the flu anyway, even if I'd been vaxed). By the 19th, I was still feeling crummy, and started breaking out in little red dots all over my legs. It's called a petechial rash, and it isn't a rash at all. It's capillaries (small blood vessels) spontaneously breaking just under the surface of the skin.
had one of my ER docs check it out. She explained to me the potential it had to be serious, but said that since all my labs were perfectly normal, she couldn't do much more. She did write me a prescription for prednisone (this almost ALWAYS responds to steroids), and told me it was in my best interests to follow up with my family care doctor.
And so it began.....
A work in progress....
I decided to start this blog as a place to talk about my vasculitis. I'm hoping, this week, to be able to give you my history, bit by bit, and then to move into more of a real time format.
I want to keep this site as positive as possible, to make it an ok read. But I am also hoping to be able to use this as a place to let it all out when I need to. I'm actually wanting to take vasculitis as out of my personal life as I can. No more whines on facebook or my messageboardds, and a new place for people to specifically come for support (mine and theirs).
I want to keep this site as positive as possible, to make it an ok read. But I am also hoping to be able to use this as a place to let it all out when I need to. I'm actually wanting to take vasculitis as out of my personal life as I can. No more whines on facebook or my messageboardds, and a new place for people to specifically come for support (mine and theirs).
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