An amazing quote from an amazing man

"We are the orphans. We are the zebras in a world of horses. The ones who have a rare disease many have never heard of. We have no famous speakers to bring life to our voices. We have no sports stars to put a face on Cushing’s. We have no pink ribbons. We have no simple tests to tell us if we have it. If no one cures us, our lives will be shortened at best and ended at worst." --Steve Owens on "Should Have Seen It"

I felt the need to post this from Steve's blog because he just has a way of saying the way it is and he says it so well. Steve also has Cushings and tomorrow he's going back to surgery to have a BLA (bilateral adrenalectomy). He had a pit tumor, and went through the pit surgery, but unfortunately it didn't work for him. So the BLA is the next step. He will be blogging his surgery and recovery, so if you are interested in reading more about him, check out his blog: "Should Have Seen It." We're thinkin' of ya Steve!

Feeling better!!

My cold thankfully seems to have been short lived. Hopefully I don't jinx myself, but I'm feeling much better. Still a little stuffy, but overall ok.

Talked to Dr. L's staff and it seems I'm getting blood taken next week and then will have a MEDEM to consult with Dr. L after the results are in. Looking forward to them to ease my mind. That fear of recurrence is always on my mind and the blood tests help ease that worry, at least for a little while.

Anyway, no other reports at this time, but once I get the results back, I'll post again (unless something else pops up!). :)

First winter cold

This is my first cold in a couple months. The official "winter" cold to say the least. My head is all stuffed up, I have the drainage down the back of my throat and I feel like I got run over by a truck. :( My kids have a cold too, tho it seems it's in their chest. So not only do I have to deal with how bad *I* feel, but how bad they feel as well. And since my body is so sensitive, in the fact that it doesn't take too much to head south, I have to take it easy. Yesterday, I felt AIish and ended up taking an extra 5mgs of hydro. I probably should've taken some today, as I've (TMI ALERT) had the runs. But I've eaten some bananas, drank Gatorade and tried to keep on top of it and I feel "ok" for being sick.

I laid around all day today, while hubby took care of the kiddos. He made sure all meals were taken care of too. I haven't been eating much again. I got my appetite back for awhile and now it's gone away again. Still sleeping good, even with the cold as well. Nothing NyQuil can't handle. ;)

Hopefully I'll hear from Dr. L this coming week. Hope he doesn't want me to do the testing this next week, cuz the cold may throw it off. He may have to wait til summer to get me feeling good tho. Something tells me this is going to be a long winter/spring with colds. . .

Thinking I need an up in dosages

I'm having a few different symptoms again and I'm wondering if I need an up in a few of my med dosages. Maybe thyroid and GH. I still need to adjust all my female hormones so they aren't pills too. I sent off an email to Dr. L to find out when my next hormone check is. Hopefully it's soon. It's been over a month since I've been on the GH, so I think it's time. But I'll find out from them to know for sure.

I still feel ok in general, just a few aches and pains that I'm sure could be better if my meds were adjusted again. I've been having a few days where I'm depressed and other days where I just get mad that this has to happen to me. I think it's all part of the depression, but nonetheless, I hate feeling it. I'm fine and I should feel great for being on the other side of this, but these damn hormones know how to make ya feel like crap. I knew hormones were mean, but not this mean. *sigh*

I'll post again when I hear when I'm getting my hormones tested again. :)

Adrenal insufficent episode

Last night I felt really weird. I wasn't sure at the time if it was an AI episode. I was cooking dinner and all of a sudden I felt weak, nauseous and lightheaded. I thought maybe cuz I had a little lunch, and I was just hungry. But I had gone out to the grocery store for about an hour much earlier and then to Staples, but then I came home. But by dinner time, I just felt BAD. I ate dinner hoping that would make me feel better, but I just felt tired. My blood pressure was normally 110/70 and when I took it with my home monitor it was 96/62. My pulse is usually high 90's and then it was low 80's. (I think that's still normal, just low for me.)

Thankfully hubby did the dishes for me and gave the kiddos a bath and got them to bed. I plopped myself on the couch hoping this would just pass. I knew I just didn't feel right tho. Similar to the way I felt weeks after surgery. I've done a bit more lately cuz I've had more energy, but maybe it's catching up to me. So anyway, I sat there for about an hour. I got up to go to the bathroom and I felt weak, lightheaded and nauseous again. That's when I told hubby to get me 5mg of hydro. I took it and within a half hr to an hr, I felt so much better. I went to bed soon after that and slept like a rock. It was just really weird tho, and just out of no where!?!

It's crazy how these things can just pop up. I wish I knew why so I could prevent it from happening again. I'm also one to think that things happen for a reason. I was worried I may be "high" again, but maybe this was to show me I wasn't. In any case, it was very worrisome. I'm just glad it didn't progress, cuz it could've gone bad pretty quickly. That's just one thing I don't want the kiddos to see. But I'm ok and taking it easy for the long weekend ahead.

Feeling paranoid...

It seems whenever my cycle is about due, the hormones of course do their thing. I have one or two pimples that pop up, I gain a few pounds and I just feel sorta blah. So of course, knowing that those are also Cushings type symptoms, I get paranoid. Part of me wants to lower my hydro to 17.25 and see what happens. Not sure if that's safe or not.

Before I needed it and was up to 25, then I went back down. Dr. L said I could keep at 20mg if I felt fine, otherwise I could up it. Now here I am wanting to lower it. *sigh* I hate hormones. The other thing is sometimes I just feel...and I know this is going to sound crazy...but I feel good and have all this energy. I know I'm on all the right hormones (and doses I think) and I think that's a good sign, but again, it worries me because I felt good when I was high on cortisol too. My weight is still the same, I haven't lost anymore. But again, I can't go by weight, cuz even when I was high on cortisol, my weight was the same. Can you see where my paranoia is going?

I have to find out when my next blood tests are. That will be the only thing to ease my mind. And when my cycle stops too. *sigh* I hate this stuff.

Back to the grind

Well, the regular routine has commenced. Kids are back to school and I'm back to doing all the housework and running errands etc. Thankfully I feel pretty good doing them.

I was taking 25mg of hydro a day to help me through the holidays, but since the first of the year, I stopped taking the extra 5mg. I didn't think I needed it, cuz the holidays and the chaos was over. Wellllll.... My aches and swollen knees have returned. :( I'm pretty sure it's cuz of the lack of hydro. But not 100% sure. Bums me out if I need to continue to up my hydro, cuz I just want to get off it. It's not a big deal to take all the meds (even the shots), but if I don't need it, I don't want to take it.

I sent an email to Dr. L and I'm hoping he responds sometime this week. Hopefully he'll let me know if he thinks I should indeed stay on the 25mg of hydro or deal with the pains and hope they go away. I am not due to get my blood tested til around Feb/March. *sigh* I'll keep ya posted tho, but overall, I'm still feeling pretty good. Life is finally good.

Happy New Year!

Wanted to make sure to post at the beginning of this year in hopes that it will bring me peace and good health this year. The beginning of a new year brings hope too. I hope good things for myself, my family, friends, and everyone reading this blog.

Something tells me 2009 will be just fine. ;)