Thursday, February 26, 2009

Test was done.

The test was done on Tuesday and I have to say - all things considered - it wasn't that bad. For any of you who may be on the National Bone Marrow Registry having a biopsy is really not that bad. I'd rather have that than another HsG ~shudder~.

Hopefully I'll have some answers in the next day or two. In the meantime, for your viewing pleasure, in case you've ever wondered what kind of instruments are used in a bone marrow biopsy.....

Basically, they give you lots of local (which was the worse part), they do a 1/16 of an inch incision, then they use the big thingie to get down to the bone and then they use the metal thing w/the top to it to drill into the bone then they suck up the marrow through the tube. I swear, when he was aspirating the marrow - it felt like it was coming up through my toes, through my leg and out my hip.

All in all, I've been a bit sore. Nothing terrible. It's definitely subsided today. So here's to hoping. The doctor doesn't think it's leukemia or even systemic mastocytosis but, after he saw my legs, agreed it could be cutaneous.

Tuesday, February 24, 2009

I'm bouncing off the walls today

I have been up since 3:00 a.m. On top of being apprehensive about my appointment with the hematologist today, I'm getting sick. I have a raging sore throat and I'm congested. Hopefully, whatever needs to be done today won't have to be put off because of this. I don't know how much more waiting my brain can take.

Friday, February 20, 2009

Missing old friends

Kim Kim & Wessel - are you lovelies still around? How are you?

Wednesday, February 18, 2009

What does all of this mean??

I'm so lost right now. This disease... this mastocytosis... what the fuck is it? So far all I know is I get hives, have anxiety, am a lousey sleeper, have a tryptase level of 70 and now... a N-methylhistamine level of 267 (normal is 30-200).

I'm healthy. I have a few minor symptoms. I haven't shocked (anaphalaxis) except for one episode where I may have shocked in 97 or 96. I've had some weird stomach things about 10 years back that could be masto or could be a virus.

Shit, now that I am obsessing about this... I had a weird thing about 15 years ago where I couldn't eat much and dropped like 50lbs. Stomach issue or masto? Your guess is as good as mine.

What I can't figure out is this.... am I sick? Seriously. I'm in pretty good shape. I normally spin 3x a week (stopped because the heat rashes me up and I'm trying to avoid known triggers), my cardiologist wishes all her patients had a heart like mine. My dad's pulmonologist says my lungs are strong. My biggest medical issue to date has been infertility.

I read stories. Stories of people who "shock" every 3-6 months without warning. Their blood pressure drops and wham, they're out. They've spent years trying to figure this shit out after suffering horrible illness. Me? I have hives. Pain in the ass yes, life threatening no. But was there a time... a time when their lives were like mine with just small little symptoms that were just irritating? Did I just get lucky to find an allergist who has knowledge of mast cell diseases and this is where I'm heading???

I have a girl's night out scheduled for Saturday. I'm a bit concerned about driving up there myself. At least now I understand the pre-cursors, etc so if I start feeling oogie, I know to get off the road and call for help. Still....

Marc has his Valentine's Day gift orders (we normally don't get gifts but)... as soon as we have a definate diagnosis.... we'll get me a pretty medilert bracelet.

Today was rough. Mom called to tell me my father's brother was dying. I wasn't close to him. In fact I was quite angry that when my mother called to tell him his brother had passed, all he could talk about was his medical shit. Well, I guess his shit was pretty bad too cause he has stomach cancer and hospice is being called in. I cried a lot today. Not so much for him (although no one should die that death) but more for his sons. I know that pain. The pain of losing a parent. It just brought it all up again. I was at work, not in a "safe" place. Shove shove shove the emotions down, get through my meeting, get through a few calls when my insides said, sorry - no more room in here and threw the emotions back up along with a nice hivey rash on my upper arms and a full out panic attack. One H1 and one h2 inhibitor along with half a klonopin and some deep breathing exercises I came back from a close call with my epi pen (much to the dismay of my coworker who is dying to stab me with it).

The though of going to work tomorrow is just hard for me right now. Part of me feels like I need a few days in bed just being alone to get this all straight but I know that that is definitely not the right path for me. I have 6 days till my appointment. 6 days till I can get some answers as to what this thing called mastocytosis means. It's going to be a looooonnnngggg 6 days.

Monday, February 16, 2009

Happy Valentine's Day

A happy Valentine's day to everyone still hanging around this silly blog. I had such a wonderful weekend.

Marc had Dylan "sign" my card. On the envelope Dylan drew a picture of me, Marc, Dylan, the cats with a circle around me which represented him hugging me. I had Dylan do the same on Marc's card. It was too cute. Marc made me dinner after Dylan was in bed. We just sat in the dining room, lit some candles and had a nice romantic dinner. We just talked, ate and drank the night away. When we were done we both said "we need to do this more often".

Dylan's day care was closed today so yesterday he went to Bubbe's house for the evening. Two of his cousins found out and insisted they had to go too. My Mom said that the kids were great with Dylan and enjoyed taking care of him. Even the little one who is 6 months older was careful with him which is very sweet.

While Dylan was with Bubbe, we took advantage of the grown up time and went out for a nice dinner. I had a bit of a reaction to something. I'm hoping it wasn't the seafood - part of me thinks it was psychosomatic but I took a benedryl just in case.

Today my Mom took them to the local aquarium on my pass. They all had a great time. My Mom called and sounded so exhausted! Happy but exhausted. Now he's at my sisters hanging out till we get there.

Friday, February 13, 2009

Probably one of the dumbest things I've said in a while

But I think I'd rather deal with IF than this stupid mastocytosis. With IF, I could say to my fellow suffers... "My FsH shot up to 35" and they would understand exactly what I'm talking about. In IF, the medicine makes sense to me. In masto - it makes no sense to me whatsoever... at least not yet anyway and it's driving me mad!

It seems like this is a relatively "new" disease so I don't know that there is any set protocol in dealing with it. It seems that many of these sufferers just go into anaphalactic shock at the drop of a hat. In fact, that's how they discovered they had the disease. That scares the shit out of me. I've made sure that the people who sit near me during the day know how to use my epi pen and where I keep it but what if I'm alone or worse, alone with Dylan? I don't EVEN want to think about it.

Another thing that worries me about this is that there doesn't seem to be specialists for this disease except the ones who first identified it (and who are not in my area). I'm spoiled. I see specialists.

Thursday, February 12, 2009

Gotta love those "aha!" moments.

So, being the super-hypochondriac I am, I have been researching the hell out of mastocytosis. I've found a few blogs (which I need to add to my bloglines) and just reading some of their reactions as it related to this disease has given me some "aha" moments.

TMI warning - Like the time I was so sick I was vomiting and suffering horrific diarrhea (at the same time), severe flushing, back pain, fainting. Yes, I know it could have been a virus - but it also could have been a histamine load - it happened to me 2x.

Also, another masto sufferer mentions that she believes her masto was triggered after a reaction to an antibiotic. I had a horrible reaction to cephlesporin. Now I'm trying to remember if I had this issue with hives prior to that reaction. I really don't think I did.

In case you haven't figured it out - I'm a little freaked out by all of this. I'm given bits and pieces of info but no where to plug it in so it can make sense. I'm actually looking forward to talking to the hematologist.

Friday, February 06, 2009


Blogging has definitely fell by the wayside as parenting has become my #1 priority. I do miss it and I think I'm going to try to start things up again. So let's see.... The kittens are great! It's the first time I've had cats that had claws (both Shadow & Saffie had come to me declawed... front and back) and I have to say that we've had very few problems (except for when they try to climb up Marc). I swear Buttercup (gray) is Shadow reincarnated. She is, by far, the sweetest little thing you've ever seen and I walked into the living room one day to find Dylan with his head resting on her belly watching TV. Wesley has very little patience for Dylan. Dylan is doing incredibly well. He has a bit of a delay with his speech but we are in the process of getting his IEP set up so within the next few months - he'll be getting all the help he needs. It's been an overwhelming process for us but we're just taking things one step at a time. Me? Doing well except for one leetle thing. For the past ten to fifteen years, I'd get these random hives. Around the time this all started, I noticed that I had developed spots that look like freckles on my thighs. I pointed it out to a dermatologist once... jackass told me it was fat deposits. Well, it looks like I may have mastocystosis which is a rare disease where your body produces too many mast cell. From everything I've read, it's not a big deal. I have a 24 hour urinalysis to do on Sunday, drop it off Monday, then hopefully we'll know for sure and go from there. If anyone who may be reading this (Gd bless you if you do) and has any knowledge of this disease, feel free to chime in.