Here's to 2009!!!

I just wanted to make sure to post one last time this year, mostly to thank everyone. For those that have helped support me this year, I can't tell you how grateful I am. To my parents and family who has been there to help push me to get better, no matter what it takes. And to those that have given us the money to help us get to that point. I am forever grateful. This year has been amazing, crazy, fun, scary, hard and yet totally worth it. While my children would love to do the whole year over since this is probably the year they got to do the most fun stuff, I would not. I want to be done with all this and move on to being better full time. That's my wish for the new year. My New Years Resolution is to start walking again and gain the energy back. I'd also like to keep all this weight off so I can really enjoy this next summer!

I did want to add one of the things I'm grateful for in the last 2 weeks or so, and that is that my hair has finally stopped coming out in clumps. It seems to have stopped falling out at all. I mean your normal one or two hairs here or there, but still! Not like it was! I'm soooo happy about that, cuz I thought I was going to need a wig for my birthday! hehe!

Anyway, Happy New Year to all that read this and I wish everyone peace in the New Year!

Reminiscing about the last year. . .

I remember last year at this time I was feeling so crummy. I had my first sinus infection and I couldn't get in to see a doc until the new year. That's when I finally decided I needed to see a Cushings expert. After having done everything possible to show my local docs I DID have Cushings, they told me to "wait it out." Why would a doc say that? Don't they know those 3 little words could kill you? Ugh.

Anyway, so in January of 2008, I called Dr. L and I made an appt to come out to Seattle to do "Cushie Camp." And in February, I flew out there, meeting my mom there (still love that she made that time to be there for me) and we stayed at the Inn there and I did the 5 days of strict testing including another IPSS. I met some incredible people there at that point in time and I will never forget them. I wish they too could say they were going to have a fresh new year. Unfortunately they are still fighting for their lives with Cushings. Makes me so sad. :(

In any case, I got the highs that needed to prove to everyone I did indeed have Cushings. I have to point out something I've forgotten to mention. When I found out I had Cushings back in 2007, it was a few months after my parents dog died of Cushings. I can't tell you how scared I was at the point in time. Like I was going to die soon too. Thankfully I learned it was something that could be fixed. I was determined to find someone to fix me. So when Dr. L confirmed that I did have Cushings, I was actually relieved. Now his team could fix me. That lead to the scary thought of "brain" surgery. Yikes!

I didn't think I'd get the diagnosis, so my husband and I had already planned a trip to Disney in May of 2008. So I couldn't go before then. Between the kids birthday, Easter and the trip, surgery just had to wait. But how long? I struggled with doing it before summer ended or after summer ended. In the end, I chose before summer. The kids were in school for the last 2 weeks, so I could somewhat recover once I was home.

But Disney was awesome when we went, and I will truly never forget it. I felt great and walked for miles and miles. My parents were there as well as my MIL, so it was a big family event. That is what got me through to my surgery, remember all the fun and the awe on my kiddos faces.

Then I flew back out to Seattle the first of June. I was a bundle of nerves, but I thought I was ready to be done with this nasty disease. Again, while there, I met some amazing people. It was nice to be there knowing others were going through similar things. As most of you know, the first surgery didn't take, but thankfully the second one did. I felt like crap, but I was finally able to go home after a week.

I knew it would be tough being home, but nothing can prepare you for how you feel then. And then going up and down on the weaning roller coaster. Ick. I can tell you now, I'm not looking forward to weaning off the 20mg, cuz I know that will probably be even harder. But after 6 months of feeling crappy from weaning and having horrible hormone deficiencies, I can finally say I feel so much better. Almost "normal!" I don't want to jinx it though.

My only issue right now is that my TMJ in my jaw is REALLY hurting. Even taking the extra hydro, it's still aching bad. I have an appt with an oral surgeon in 2 weeks to get it checked out. I need to call back and see if they can up the appt. It hurts that bad. :( I've seen my chiro to help with the muscles in my jaw and it's not that . It's definitely the joint. I think the disk in my jaw may be dislocated. Least that's how it feels. I can't eat much, let alone things that are overly chewy or hard. :( I can barely open my mouth too. Brushing my teeth hurts. It's that bad.

Other than that, I'm good. I have energy again and I can do things I haven't been able to do in awhile. A whole year has gone by and what a difference it's made. Now here's to the New Year in hopes that it's uneventful for everyone in my family. We all need a year of peace. That's my wish for the new year.

Merry Christmas!!

I know this is a little early, but seeing as how I'm slacking anyhow, I figured it should be early or I'd just miss the holiday altogether. hehe!

Anyway, just wanted to update that I'm doing well! Can I really say that!? I'm doing WELL! I'm feeling ok, still not "great" yet, but I think I can say I'm feeling pretty good! I think the growth hormone has finally kicked in - even if just a little! While I'm not fond of giving myself shots, it doesn't hurt as much as I thought it would.

But I feel like a kid waiting for Christmas. I'm really excited and not so much for myself as I am for my kiddos. They have asked every night for the last week if they can open a present. LOL So tomorrow it starts and it's very exciting. I also can't wait til it's over and I can go back to resting again. Honestly, I hate being on 25 or 30mgs of hydro. I just want to stay on 20 or someday soon go lower. But I won't push it.

I'm grateful for everything that's happened this year. I'm grateful for the timing of the surgery, since hubby's job is in the toilet. I'm grateful to have come this far. I really try to appreciate each and every day and everyone in those days with me. I'm not an overly religious person, but I am so thankful to have God as a huge part of my life. I truly believe him and my guardian angel are to thank for helping me get through all this in the last 6+ years. I never noticed more than I do now.

In any case, I won't ramble (more than I already have). I'm on the up and up and I'm about to have a great Christmas!! I hope all of you reading this do too! (If you celebrate Christmas of course. hehe!)

The holidays inducing stress...

Sorry I haven't posted in awhile. The holidays and other illnesses are getting the better of me. I'm doing good tho and have finally finally FINALLY started Growth Hormone!!! YAY!!! My insurance approved at a really good rate for 3 months and a nurse came and showed me how to give myself a shot! hehe! While it hasn't kicked in yet, it makes the mental state, so much better knowing it soon will.

The holidays do make this all stressful, so I have been upping my hydro to 30 on some days. One day I really wasn't feeling so well (after a day of over doing it) and I had to stress dose at 8pm at night! I didn't like doing that so late, but it definitely made me feel better. It's better for me to take a high dose in the morning and take my 5mg at around 2pm. Gives me just the mmph to get through the rest of the evening.

I'm still sleeping well and I think my need for drinks at night has finally gone away. I'm down to 175 lbs from 206 before surgery. (My memory is still shot, so I may have said I was down weight in a previous post. But here's the exact numbers. hehe!) My hair is still falling out tho, but my skin has gotten even better. My acne is pretty much gone now! The hair on my body is gone and the hair on my legs is so much lighter than how it used to be! Summer shaving is going to be so much easier this year!! *wink*

One of these days, I'm going to make a list of symptoms before surgery and my symptoms now. To really see how far I've come. I mention all the symptoms so scattered, even I can't keep track. I am looking forward to the holidays tho and seeing my kids so excited for Santa. It makes all the stress beforehand worth it!

Oh and I have finally downloaded my pictures from my camera and I will be adding some pictures to previous posts soon, so keep an eye out! :D

Sick sick sick!!

I've been so sick the last few days, I finally sucked it up and went back to my PCP to see if I had strep. Unfortunately, I got to see Dr. Witch (replace w with b ) and she was not helpful at all. Saying I was fine and it was "just a cold." So I went home -in pain- and tried to relax. It didn't work. I called later in the afternoon to ask for a strep test, thinking I really had strep, cuz my throat hurt so bad. Not the rawness of a sore throat, but where my throat felt like it was all swollen. Even drinking hurt.

Thank God when I went back, my regular doc was there. I truly love him. He doesn't know much about Cushings or the aftermath, but is so willing to learn. He checked me out and did the strep test which came back negative. He said I have a sinus infection. It was causing the throat pain and ear pain and headache. I was crying (just being overemotional that I am) and thanked him. He gave me Levaquin and I told him I'd like something else. So he gave me Amoxicillin. Yay! This is the best part too. He could see how much pain I was in. So he gave me a shot of Toradol. Man I love that stuff!!!! I haven't felt that good in a LONG time! All my pains (bone and otherwise) were eased! It was so nice. I asked if I could get a script, but they don't give those out so easily anymore. But he said I should feel better tomorrow.

Of course I woke up this morning feeling a little better than I did yesterday morning, but the general aches and pains are still there. My throat didn't hurt, but I do have laryngitis now. I can't speak a word. My family's loving it! And my mother thought it was hysterical! Just you wait til I get my voice back! I'll tell them!

Carpal tunnel....great.

Well I went to the doctors last week and had this nerve conduction test and it DID show that I had carpal tunnel in my right hand and not so much in my left. So at least now we have a baseline. I'm wearing a brace on my right hand to try and ease the pain and make it better somewhat. At least before I get the GH. I'm just eagerly awaiting the growth hormone meds now. . .

Unfortunately my whole family is sick and I was the last one to get it oddly enough. My throat hurts, my head hurts and I just feel icky. It's just a cold, but nonetheless yuck. So far the 25mg a day seems to be ok while I'm sick.

I hate this time of the year tho. The colds, illnesses of all kinds. Blah. I like it as far as the holidays tho. Just wish I had more energy to get my butt out there. My mom comes in this weekend, so she'll motivate me and help me out. Then my dad and brother will follow after that. This month is going to speed by, just cuz I have so much to do! Anyway, I just wanted to pop in here to update. : )

I got my results! Happy 6th month! Yay!

Ok, for the 5th and final day of bothering Dr. L, I finally got through. Thank GOD! I have my lab results!!

I now went from hypothyroidism to hyperthyroidism. I sort of knew this already tho. But he said he thinks that's what's causing me to be flushed. My Free T4 was 2.37 and my TSH (even tho I know it doesn't matter) was 0. He moved my meds from 150mcg to 125mcg and recheck in 6 weeks. (or more) So we'll see if that helps.

He is FINALLY starting me on GH!! I'm so happy about that! Although, he's worried about my carpal tunnel. I developed that in the last few weeks as well and he said if he gives me GH it may make it worse. *grrr* He says he will order the GH, but he wants me to have a local doc check out the carpel tunnel. So I have an appt on Friday with my PCP.

And at 6 months, my cortisol is still only 1.5 and my ACTH is 22. I'm concerned that my ACTH keeps going up, but he wasn't. The range goes up to 48, but still. With no cortisol and normal ACTH, he just said I'm secondary addisons. I don't know tho. It's still somewhat worrisome. But good nonetheless!

He wants me to up my hydro to 25mg too, which he thinks will help the other aches and pains I have. I really don't want to go back up tho. So he has me down now officially as panhypopit. He said we will continue to reevaluate that, as he still thinks my pit will kick in. I don't know tho.

Overall this was a good report and everything I wanted to hear. Now if we can just get a move on it, so I feel better already!

Happy 6 months to me...

I can't believe it's been 6 months. And sure enough, I feel like I have signs, something just isn't right. Everyone keeps telling me it's my wacked out hormones, but I dunno.

I'm STILL waiting for labs. Tomorrow it will have been 2 weeks since my blood test. This is CRAZY!! I'm really upset with Dr. L at this point in time. He doesn't seem like he cares about me postop!! I can't go out there right now due to money issues and Dr. L is blowing me off!! It's seriously upsetting. He won't email me back, won't call me and certainly won't give me my freaking results already!! A lot of this worry would be done already if he just gave them back to me!!! Grrrrr...

Anyway, back to my odd symptom...Red flushing face. I have no idea why this is happening and it's not happening at a specific time, but randomly. I get hot it happens, I get cold it happens... *sigh* My jaw has gotten worse, that I finally saw my chiro on Monday. I see him again this afternoon. He's using this laser thing on it and it helps, but only short term. I need to see an orthodontic surgeon so he can really make sure things are ok. I can't eat anything crunchy as it just hurts and makes this little knot near my ear swell up more. Chiro says it's all muscle, but I don't think so myself.

I had an MRI this morning and I'm hoping that actually shows something regarding my jaw. But we'll see. I'm not sure what Dr. L is looking for exactly as far as the pit tumor. I don't have much pit to look at. But I guess if anything is growing, maybe he'll see it. Just seems like he didn't see it the first time, how would he this time?? So confusing. I'll probably have to wait 2 weeks for that answer too, even tho the radiologist told me it would be ready in 2 days. *sigh*

I'm just bummed and hoped I would have better news for my 6 month postop anniversary.