Thursday, June 19, 2008

I have spent

the entire day feeling like such a moron for not going into the ER last night. So much could have gone wrong and I KNOW that but stupidly talked myself out of going. The only reason Vin even went to work last night was because I guess I talked him into it (I don't remember any of that though). He has informed me that from now on we do what HE decides with medical situations. I told him I agree and that is the plan from here on out. I have reached the point of being too incompetant to even handle my own care.

I told the endocrinologist about my symptoms and she said it sounds like maybe I had another TIA and a severe reaction to the antibiotic that my regular doctor put me on. She said she didn't see a reason to order a CT scan. She is stumped though as to why I'm still having mini-strokes because we thought that lymph node we removed would stop that but obviously it hasn't. So now we're back to square one with that.

Personally I don't agree as far as the reaction goes but I'm so tired of going through doctors because it feels like they either don't know or don't care. Vin isn't happy with the diagnosis either but he's at a loss as well because it's all just so overwelming with all of my health problems. I feel so bad for him because he has to take care of his 33 year old wife. So not fair.

So what happened yesterday very well could be a in part a severe reaction to the Avelox that I was taking I suppose. To be honest, I'm still really out of it and don't remember much about yesterday. Today things are still foggy, I can't concentrate, and I feel like I'm going to black out but I'm suppose to quit taking the Avelox and if symptoms continue then contact my endo again and she will decide what to do. *sigh*

I really don't know what to do at this point. I have a number of the severe reaction effects from the Avelox AND I have all the signs of a stroke as well. My top lip is also swollen and has been all day. No clue why. I don't know what to do from here. My endo didn't even really seem like she wanted to hear about it you know? Even Vin was upset about that.

I'm sorry to scare all of you and I'm sorry I can't give a straight answer to you right now. It may be a severe reaction to a med or it may have been a stroke. I don't know but unless I can convince a doctor to have a CT Scan done all I can do is sit and wait for the next one. I am really out of it and just can't think clearly. I made Vin go to bed because he needs to work tonight and needs some sleep. He doesn't need to be sitting up worrying about me.

I think I'm going to clean out some email, tell the kids what to fix for dinner, get something to drink (I'm also dehydrated the doctor said), and just lay here feeling all funky. lol. Fuck I can't focus! I hate this so damn much.

Wednesday, June 18, 2008

Ummmm, Anybody Know About Strokes?

It's very likely that I had a stroke earlier today and this is now scaring the hell out of me. No, I'm not overreacting either.

I was sitting downstairs with Vin talking to him when all of a sudden I felt like I was going to throw up NOW. I ran upstairs, didn't throw up, and layed down on the bed. My body started feeling really heavy, I got a sudden horrid headache, I was seeing spots before my eyes, I felt like I needed to sleep NOW because my eyes were crossing, and I kept blacking out for a few seconds at a time along with slurring my speech real badly. Seriously, I would be sitting there I guess slurring at Vin (I thought I was talking okay) and then I would just fall over suddenly coming to once I hit the bed.

Vin didn't know what to think and we honestly didn't think at the time that it was something that bad to worry about. We thought maybe I was tired or just dizzy from being hot or something. If we had a brain in our heads we would have called 911 for an ambulance.

The reason I think I had a stroke is because it seemed like a heavier version of the mini-strokes I've had for the past year or so. I still have a bad headache, my vision is blurry, I feel "fuzzy", and it's hard to grab the words I want to use when I talk. I just feel so weird.

I have an appointment in the morning with my endo and I'm going to ask her about it and see what she says. It has me scared at this point and I don't want to mess with something like this. I'd go to the hospital tonight but I don't want to waste eight hours in the ER waiting just to be told that it's probably nothing. It would be very hard on me to leave the kids home alone for that long (Vin works graves and the 17yo is old enough to babysit). *sigh*

Anyway- has anyone had a mild stroke or know someone who has? I'm just wondering what it felt like and how long the side effects lasted. Either way I'm talking to the endo tomorrow to see what she says and if this happens again I promise that I am heading to the ER.

Tuesday, June 17, 2008


FINALLY I have some really great news to share with all of you. First I want to thank you though for always keeping the kiddos and I in your thoughts and prayers.

Today was Big B's follow-up appointment with his endocrinologist. Three months ago the results from his 24hr urine test (that measures catecholamines, metanephrines and VMA) suggested that he was developing pheochromocytomas aka the adrenal tumors that are part of MEN2a. The doctor said we would test again in three months and see how quickly things were changing.

Today we received the results of his most recent test and I am so incredibly happy to tell you that this test came back CLEAN!! As of right now he is NOT showing signs of pheos and we can breathe a sigh of relief for awhile.

Things could of course change with the next test in six months but for now we are just happy to not have to be discussing when to have surgery on him. Again, thank you for always looking out for us. I am so over the moon happy with this news and Big B can look forward to another year of beating the odds.


Tuesday, June 10, 2008

Now You See It, Now You Don't

What is it about me that makes tumors or "possible" tumors in my body want to play hide ~n~ seek with imaging equipment? Yesterday I got the results of my 6 month follow-up ultrasound on the lump in my right breast and now I don't know whether to feel relieved or like it's just same shit different spot. *sigh*

The results this time are that they couldn't find the lump anymore. So either it is gone (which would be fabulous news) or just hiding and will show up again in 6 months making this start all over again. If you remember the trouble I've had off and on through the years with a "now you see it now you don't" possible tumor, then you'll know why this is so frustrating for me. For right now though I am taking it as a good sign and enjoying the news. Now I can move on to bigger things in life right?

The infection in my neck has also returned after being given the okay by the surgeon. This lady pisses me off to no end. I told her nurse that the infection is back but I refuse to see that surgeon EVER again! I told her I would rather go sit in the E.R. for eight hours and have another surgeon lance it instead. The nurse asked again if I was okay and I told her that I want released from Dr. T's care...period! Thankfully the infection is nothing like it was last month and I actually have a normal sized neck.

At this point I will be having my endocrinologist refer me to Dr. Moley in St. Louis because I don't trust anyone around here. Let him look at my scans and my neck and decide how to treat me. I'm tired of being afraid of what is going to get screwed up next by some half-assed quack. I've heard alot of good things about Dr. Moley and I think I would finally feel like I was getting the care I need.

Big B will see his endo next week and we'll get the new results from his 24hr urine test. I'd love to hope that everything will be normal but the realist in me just hopes things haven't changed at this point. I don't want him having to join me in adrenal sufficiency ever if possible.