TMJ, oh the pain....

My TMJ on the right side has really swelled up. :( I can't chew anything crunchy or anything that takes more than a couple chews. It's bad. The right side, in front of my ear is all swollen. I'll be looking for an orthodontic surgeon Monday to see if there's ANYTHING besides surgery that can be done. I'm going to assume this is pain that continues from the lack of GH. This one is serious tho, cuz I am having trouble eating. All I hear is that crunching and grinding of the bones and stuff in my head!! I ice it, I take advil (along with all my other meds) as often as I can, but OMG this sucks. :( Didn't help my thanksgiving when I couldn't eat much. *sigh* I'm praying,hoping and crossing every finger that Monday, I'll FINALLY have the lab results. I'll bug the lab again if I have too.

Anyway, the thanksgiving was ok other than that. Hubby's family all around, it was crazy. There was some like 50 people at MIL's restaurant. It was nuts. But fun. Kids had a blast and actually ate turkey. I was so proud. hehe! Since MIL is closing the restaurant very soon, we got to take stuff from it. She let us have one of the 5 tv's! It's a 42" plasma flat screen tv. We're so friggin' excited!! Once the restaurant closes, we'll get it. But not just yet. That's such a perk for us and I'm looking forward to it.

I do hope I have enough energy to get through Christmas shopping. That's right. I'm a late xmas shopper. I sort of have a reason, but still. Now I just have no mmphf! I need to get up and go and all I want to do is sit and rest. Sad eh? But I'll get it done, it'll just take me the whole month. Here's to December tho!

Happy Thanksgiving!

I've felt so crappy lately, I wasn't sure aside from my kids and husband, what I was thankful for. But all the pains and frustration with this disease makes me definitely appreciate life so much more. Really and truly seeing that the little things are so meaningless.

So I am of course very thankful for my wonderful and supportive husband and my crazy kids. But I'm also thankful for making it through surgery w/o any problems, for having all help from my family and friends, and of course all my cushie friends. They definitely helped me get through this. I live life a little differently now and I'm thankful this disease opened my eyes to more than just what was right in front of me. The small/little things really are meaningless now. I'm thankful to just be alive and to LIVE! That's what it's all about isn't it?!

This is my favorite quote that goes along with what I'm trying to say... "Yesterday is history. Tomorrow is a mystery. And today? Today is a gift. That's why we call it the present."

While I'm living in the present, it hurts, but I know each day will EVENTUALLY get better. So I deal with the pain, knowing that I will appreciate it much more when I'm feeling better. : ) And just to let you know, no lab reports yet. They won't send them till all results are in and the IGF-1 takes the longest. Hopefully next week I'll finally hear something.

A day of sorrow is longer than a month of joy.

I'm trying really hard to be positive. But some days are so hard. I feel so crappy and I am just totally useless. My memory and concentration are so bad. I retell stories, I forget things, I do things I didn't know I did! It's just bad. And I get in this depressed state. While it only lasts a short time, it seems like it lasts longer. It's truly heart wrenching. I just cry, about anything and everything. Like everything is overwhelming. While sometimes it is, other times it's not, but SEEMS like it is. :(

Yesterday, my lil' girl did not feel good. She was nauseous and actually puked late morning. Of course panicking, I put on the hospital mask and wore it all day. I am so scared of getting sick and having to go to the hospital. 1) I don't want my kids to see me like that, and 2) We can't afford for me to be in the hospital again. Hubby is losing his job and I don't work. NOT a good combination.

In any case, my daughter was ok, just not feeling good the rest of the day. I think she had food poisoning. A very mild case, but nonetheless. She woke up this morning all chipper and ready to go. We'll see how she does when she comes home from school. *worried*

Haven't heard from Dr. L yet on my test results. Was hoping I would, but maybe tomorrow. *crossing my fingers*

TGIF and 22 weeks postop

I'm gonna stop apologizing for not getting on here as much anymore. I don't like writing about my depression. I think it just makes me more depressed. I hate feeling this way. It's not me.

The more research I did, the more I think aside from the lack of GH, I think the thyroid meds have gone beyond being good for me and now have made me hyperthyroid. I kept waiting for a jittery feeling or shaky feeling or something, but that never happened. So I thought whatever I was feeling was all the GH deficiency. Little did I know. Here's my newest symptoms...

• Heat intolerance (I used to be cold alot, now I'm hot alot!)
• Breathlessness or shortness of breath (Walking up steps causes it bad!)
• Increased bowel movements
• Fatigue (I now can take a nap in the afternoon & still fall asleep at night at 9pm!)
• Fast heart rate(Again, going up steps or walking too much does this.)
• Trembling hands
• Weight loss(I've lost an additonal 10 lbs!)
• Muscle weakness (My leg & arm muscles hurt a lot!)
• Hair loss (I think all the deficiencies and whatnot are causing this. My hair doesn't know to stay put anymore! *sigh* )

Of course I have all this along with the depression, lack of libido, itchy skin, memory & concentration loss, joint pain & swelling, carpal tunnel, dry skin...

I'm on the new estrogen & testosterone meds along with progestin, still waiting for it to kick in... I did just have a blood test done yesterday to test my cortisol, acth, tsh, free T4, and IGF-1. I'm praying that my IGF-1 is lower than it was in Sept. Then Dr. L will agree to give me the GH meds w/o having to do the stim test. (Which now even my local endo is having problems with!) I'm hoping that that the T4 is high, so we can lower the dang drug and I'm hoping the cortisol and acth are low still. Not too much to ask eh?

I have an MRI on the 3rd (exactly 6 mos from my surgery) and hopefully a week after that I'll have all the answers I need. I just pray it's good news. Other than all that, I'm just managing day to day. I just don't feel like "myself" yet. But hopefully I will by Christmas.

Feeling a little better than Friday

Talking to other cushie woman, I found out what they wanted to do on Friday was probably ok. However, since I don't trust the medical community anymore, I wasn't sure they were doing it right. While of course hindsight is nice, it doesn't help me at this point. I still need to find a place to do the GH test and soon.

I have my fight back and I want to get this done and feel better. If it means going to Seattle, I'll go, I just don't want to if I can get it done at home. Plus I don't want Dr. L to be in control of everything. If anything happens and I piss him off, he'll drop me like a dead weight. I need my local endo to know what's going on and to give me the right meds. Once all is balanced, I pray it stays that way.

One good thing out of all of this. . . I'm down to 25 lbs lost! I had gained some of the weight back there for while, but I'm assuming the thyroid meds finally helped and kicked in. Which is funny since the lack of GH should make me gain some weight. The lack of estrogen is probably helping too. I'm sure once I'm back on all the right hormones, I'll gain the weight back. I hope not and I hope to be able to exercise to keep it off, but we'll see.

And since I mentioned the estrogen, I forgot to post that I'm on a new estrogen med, called Estratest. It's a pill (which I'm not happy with) and it has testosterone in it. I also have to take provera the last 10 days of my cycle. Blah. Too many pills in a day. Sucks. Ah well.

Depressed . . .

I was going to post about the GH stim test I was SUPPOSED to have today...AGAIN...but I was worried I'd post for nothing. Guess I had a right to be worried. This time I stood up before they put the needle near me to make sure they knew what they were doing. Glad I did, cuz the didn't look at the script AGAIN and were not doing it right! Again, the medical community has let me down. They really and truly have no clue. And they did anything just to get me out of there, even if it isn't right. They won't listen to me or probably anyone who tells them how it should be. THEY are the doctors and THEY have some sort of a GOD complex that they are right and the patient is wrong. I'm so sick of it. I just cried today.

I have been fighting like hell, not to have to go back out to Seattle. It's a freaking blood test!!! I'm fighting a losing battle. Hubby is giving me one more week to find somewhere to do the dang test and then he's buying me a ticket to go back out to Seattle. Even tho we can't afford it, nor do I really want to go!! Not before xmas!!! *cry*

I'm just so depressed about this. I need this test sooo badly. I'm in more and more pain every day. Thankfully, for now Dr. L is ok with me doing MEDEM's. Meaning online meetings. I will do the regular blood tests and MRI, but that's all he'll accept. He won't accept the results of the GH stim test or the CST. So I have to rely on my local endo for that. Very scary thing as well. :(

It's just not fair that this needs to be this hard. At this point, this has to be worse for me than diagnosing the dang Cushings. *cry*

101st post!

I'm sorry I haven't posted in awhile. Not much new going on. I feel bad just posting how my muscles and bones ache all the time and how much hair I'm losing. It all seems to be getting worse. I now have what I think is carpal tunnel in my right hand. My hubby doesn't think it's carpel tunnel, just my joints or whatever being inflamed and causing my nerves to be pinched. I dunno. And pretty soon I'll seriously need a wig, because my hair is just falling out so quickly and not growing back as fast. Even with special shampoo to help it grow back... It's not so good not having hair on my head, but it's ok not having it on my legs. *wink*

I also got a call from my ob/gyn yesterday with results from my estrogen/testosterone blood test from last week. Turns out my estrogen is still low (even after being on the estrogen patch for the last 5 weeks) and my testosterone is low as well. *sigh* So he wants me on a different estrogen drug as well as testosterone. Unfortunately, he's not versed in what these drugs do to corisol & thyroid, so *I* have to look them all up and decide which is best for me. Problem is, I have no idea either. All the side effects and worrying about cancer scare the crap out of me!! But I don't have a choice unfortunately.

I also talked to one of the nurses that was real nice to me when I tried to get the GH test the first time and she is going to help me get this test. I turned in all my paperwork from my local doctor and she said she will order the drug and get back to me. I hope it doesn't take too long. I will bug them at least once or twice a week, until I get this test back. So my next call is on Friday if I don't hear from them before then. I just need to get this test done.

Lastly, I need to call Seattle and have them send me out labs to check my thyroid. It's been 6 weeks for that too. I'm hoping to get a medem to discuss all the issues with Dr. L. I just need to get all these tests done already.....

So I'm still around, just trying to hang in there until all these things finally work together. I just hope it will be soon...

My interview on Blog Talk Radio!

I did an interview for Blog Talk Radio to discuss my Cushings journey. My screen name is casperslove, so you'll have to click the link to find my interview. :)

Election Day!

Wish we could elect doctors and tell doctors which ones shouldn't be practicing. But that's not what today's about. A new president. A new president to decide how the next 4 yrs will go. New healthcare plans and whatnot. God helps us all, that's all I can say.

Other than being out there to vote, today I hung out with one of my best friends and her twins. It was nice to hang out and have the kids together to play. We went bowling and I think my arm is going to pay for it tomorrow. I didn't eat much at lunch, but I seemed to drink a lot today. I had 3 soda's which is unlike me and hasn't happened for quite some time now. I just seemed overly thirsty.

In any case, I'm feeling pretty good. It has been 4 weeks since I've been on the thyroid meds and I'm starting to wonder if it's just now kicking in. We'll see. Muscles and bones still ache, but that's expected. Otherwise all is well.

20 weeks/5 months post op!

I can't believe it's been 5 months since surgery. For the most part, I'm feeling better. I think if the hormones were balanced I could say I felt "great." But unfortunately I still can't say that yet.

I'm still frustrated by the fact that I can't get the stupid GH test done. But I'm still working on it. I gave a letter to my PCP and I'm praying he will help. I'll post when I hear back.

Other than that, this weekend was uneventful. I just rested. I forgot to post that when I went to my ob/gyn appt, I had lost 4 lbs. I haven't even tried! Not sure why that is. I've been eating the same, as I have little appetite still. Maybe someone "up there" was giving me extra leeway with all the extra chocolate from Halloween. hehe!

I'm still sleeping well, but the one thing I'm most worried about is all this hair I'm losing. I am seriously worried. It is just dropping out. I will need a wig here soon. *sigh* I've made it this far tho, I'm alive and for the most part, well. That's what matters.