A few ramblings

Well I didn't go Thurs to get my blood done like I said I would, but did go on Friday. I went early too, as I just wanted to get it done. But wouldn't ya know it, after I came home from taking the kiddos to school, I had a message on my machine. It was from the lab, saying they messed up and missed a test. Turns out they forgot to take my 'Renin' levels as asked for. So I looked it up online and saw it related to cortisol and aldosterone. Well when I got out of the lab the first time, I had taken my hydro. So I asked them if taking the meds would mess with the results. They swear it won't. But I want to know how do they know for sure. Are they doctors? NOOOO. So with my luck it will be all screwed up. Hopefully my local endo won't go by that alone anyway. I didn't want to go at all, but did. Now it's all done. And I wait. March 4th. Seems soooo far away, for just over a week away.....

Getting more bloodwork

I need to get more bloodwork done for my local endo. But I'm so nervous, I can't get myself to just get up and go. I don't know why I feel this way exactly. It's not even that I think it's the pit Cushings, I'm actually still worried it's ectopic. My last ACTH level was 22, with high range of normal being 48. I'm already half way there. What if the level goes up higher? Does that mean something? And then what if my cortisol is higher then the 2 it has been and the ACTH is high too. Oh the horrid thoughts that go through my mind.

Then on top of that I get paranoid that I drank caffeine or had chocolate (which has caffeine) etc. Don't want to do anything that will raise my cortisol anymore than necessary. I am also coming down with what I believe to be a chest cold. Again thinking the worse that maybe it's lung cancer, but the yellow mucous is telling me it's probably just a cold. You can see where my mind is going nuts tho.

On top of that, I've only been taking the estrogen cream for a week, and I'm already getting cramps. I haven't felt them since before surgery, so I'm not sure if it's good or not. I think it may be, but again, it's got me somewhat worried. Maybe I should've just titled this post "paranoid." Grr..

Ok, I'm going tomorrow to get my bloodwork done once and for all. I will have ALL my hormones checked and we'll know everything in the next 2 weeks. But ooohhhh boy will it be the longest 2 weeks.........

Quick Update!

Just wanted to post that I finally got back my lab results for my thyroid and GH. Turns out the dosage I'm on for thyroid is fine, levels are middle of normal range. Not what I expected, but I guess that's good. Still have days I feel like I'm cold, but maybe I'm just cold.

My IGF-1 unfortunately was still low. It was 50 before I started the Growth Hormone shots, but it was only 100 on the shots for the last 8 weeks. The low range of normal was 109. So you can see I'm still low, and so did Dr. L, which is why I need to up my dosage from .2mg to .4 and see how that does. I'm hoping I don't have to give myself 2 shots, but time will tell.

Otherwise I feel pretty good. I can't imagine how much more energy I will have upping my GH. I feel like I have more energy than I've had in a LONG time. Still have some small muscle aches, but we'll see. I will be going to get another set of bloodwork done for my local endo next week. Hopefully that will give me some comfort finding out what my cortisol #'s are. I'm getting paranoid. I hate that feeling. Nothing specific is going on, just little things like my neck aching and some headaches. I think it's estrogen and whatnot related, because I just started a new cream (no more pills yeah!!). But still. Peace of mind is a big thing! hehe!

Happy Birthday to ME!

Yep, it's my birthday today. The big 36. I'm just happy to be alive, cuz last year I wasn't quite sure I'd make it this far.

Anyway, nothing really going on. I got some blood checked today. Only thyroid and GH. Dr. L wouldn't check my cortisol or ACTH yet. Says it's too soon since we just checked in in Dec. Would really make me feel better, but nope. This is just a test to see if I need to titrate meds again. Fine. I have an appt with my local endo in March and I have to do a full hormone panel for her, so I get it done anyway. :P

I'm also a little bitter, because now Dr. L is telling me I don't have to come out til next December. Really. For an MRI (which I just did here in Dec) and to have more blood taken. Honestly, IMO, what a waste. I want to keep him as my endo because I'm still worried about all this, but can't we just communicate long distance? Since that's what we're doing now??? I don't know what to think or do. I had planned on going out early, but he said no - it wasn't worth it. By that time we should have titrated all meds to the appropriate dosages. Probably true, but still. I can tell you one thing, I'm not going in Dec. I will definitely go before then, if I DO decide to go, one way or another.

Anyway, I'm not doing anything overly special today. Hubby has grad school tonight after work. So we'll do something together another day. The kids are cute and made me a few things and a card, which makes my day. I'm also planning on going out with one of my best friends and her twins for dinner tonight. Two adults and four kids...should be fun!! :D

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. ;)

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.

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.