Another day, another pain

Sorry about the long post yesterday. I wasn't sure where to stop. So I figured me coming home was good. But I wanted to also talk about the day I got my stitches out. OMG. I was worried. How can ya not be?!?! I have a scar from my belly button down to my pubic bone. It's big and there were a lot of stitches. My skin was all pulled up together and I swear with the stitches in, it looked like little toes on my stomach. I was concerned it would look bad after the stitches came out. THANKFULLY I was wrong.

But he lifted, clipped and pulled TWENTY-TWO stitches!! I was doped up on Vicodin too and I still felt each one. There were a few that weren't bad. The others...OUCH. Once it was all done tho, my stomach looked 10 times better. It was all flattened out. So it wouldn't heal bad!! Yay! It felt so much better after they were out!

Now the only pain I have with it, is under the skin. Towards the end of the day it's worse. It cramps and pulls and it hurts. I can feel my stomach on top of it. After I eat, it's painful for a little while, but then goes away. Then comes the gas. I swear if it's not one it's another.

My only complaint at this point is peeing. (sorry tmi) It hurts when I go. My bladder just isn't happy to be in it's new spot. I'm seeing the doc tomorrow and peeing in a cup to rule out a bladder infection. I kinda hope that's it, so at least it can be fixed and stopped! It's painful! Can't wait til all the pains just stop!!

Taking it day by day

Sorry I haven't posted sooner. It's been hard to get on the computer at all. This recovery is ten times harder than the recovery from pit surgery EVER was. I'm 10 days postop and I'm still in pain. I can't sit straight up and I can't stand in one place for more than a couple minutes. I have to be slow getting in and out of bed and I still can't bend or lift anything bigger than a gallon of milk. I lay in a recliner most of the day and you would think I could get on the computer. But I can't lean anything on my stomach and it's hard to type otherwise. Even now I'm leaning, so I have to keep moving from side to side to stay comfortable and not in pain.

So lets go back and I'll go through my surgery and the days in the hospital.

We had to be at the hospital by 5:30am on Friday the 22nd. That meant driving by 5am because it was in downtown Trenton and about 20min away. We got there a little after 5:30. Because I registered a couple days before, I didn't have to worry about that. They finally brought me back at about 6:30am. I changed and they took my temp/blood pressure and put in the IV. I was getting the nervous/cold shivers at this point. I was so scared. Scared that it was cancerous, scared that something would go wrong, scared that I'd have an AI crisis, and overall scared about what to expect postop.

I'd read and did all sorts of research. Keep the ovaries or don't. Keep the cervix or not. I decided to take it all. I had had endometriosis since I was 16. I also had PCOS. But it seems like I had a case of Cysts Gone Wild, because one of my ovaries had a giant cyst on it, 12+cm, yet benign thankfully. And that's what they were taking out. Because I am also panhypopituitary (all my hormones aren't working anymore) my other ovary wasn't working anyway. I have been in menopause, since my pit surgery. So was it worth it to keep it? Knowing that the same thing could happen to the other ovary and I'd have to go through this again anyway? So I chose to just take it all out. As much as I wanted more kids, it wasn't gonna happen. So this was the definitive answer.

Anyway, back to my surgery. It wasn't til about 7am or soon thereafter that they came to get me and take me back to the OR. They wheeled me away and thankfully we didn't have to go far. Soon after I went from the bed they wheeled me in on to the operating table, they gave me my 100mg of hydro & something to relax me. It's like I was floating. It didn't seem like soon after that, that they put the oxygen mask on me and told me to take deep breaths. I think I only took 2 or 3 breaths and then I was out.

Next thing I remember, I was in recovery and felt the searing pain in my stomach. I pushed off the oxygen mask and tried to tell them how much pain I was in. My mouth was so dry it didn't come out that way. But finally they got the point and gave me Dilauded and handed me a button & told me to push it whenever I felt pain. I didn't understand for awhile, but eventually it kicked in! I also had a catheter then too. I was glad they didn't put that in beforehand. One less pain to worry about. I don't know how long I was in recovery. A couple hrs maybe? Eventually they took me to my own room. It was small, but it was nice. I seemed to have good nurses and of course I had my pain button. I slept a lot and vaguely remember hubby coming in talking & then leaving. I know the doctor was there and the only thing I heard was that it wasn't cancer.

Saturday I woke up in more pain that I was the day before. The only difference, the pain meds don't help gas pains. O. M. G. That was truly worst than anything I've felt. It was in my shoulders and it felt like I couldn't breathe. So they took the catheter out and told me to try to get up more. It was hard to get up. It took me a few hrs, but by the end of the day I was doing short walks up & down the hallway. It was the only thing that gave me even remote relief. And that was along with taking Mylicon & GasX. It was hard to walk because the pain on my incision was burning. And of course I didn't want to pop a stitch. I was in tears tho, the pain was so bad.

Sunday morning I woke up and the pain was somewhat better. The nurse overnight gave me some hot tea with Ginger Ale mixed in. It didn't taste great, but I think that helped. The gas started moving after that thankfully. My friends came to see me that afternoon and that helped take my mind off things. Then hubby brought the kids there too. I did more walking and tried to keep moving more as well.

On Monday, they said I was doing so well I was gonna be released. I actually slept all night w/o waking up in pain. I just had to pass a bowel movement. *sigh* I've always had this problem after surgeries. Every single one has ended in a suppository; why should this one be different. And of course it wasn't. I did get to take a shower too and thankfully I managed to do it on my own and didn't need a nurse watching over me. That's always so uncomfortable. In any case, I left the hospital at about 1pm. It was weird to come home and I was sooo tired. I had the sofa bed on the main floor to crawl into and I slept most of the afternoon & evening. The kids were happy to see me too. I hate being away from them.

Since then I've literally been in bed or the recliner. The pain comes & goes and I take the pain meds as needed. I don't have a full appetite yet but it's ok. I'm just taking it day by day. :)

Home & in pain!

OMG this was worst than my pit surgery by far. No complications tho and all good news in the end.

But I'm home, propped up on a bunch of pillows in bed. I think I'm just emotionally wiped and that's normal for having everything removed. But I still get tired very easily. As much as I want the stitches out, I dread it. Getting those out Thursday. I'm just doing the bare minimum right now.

But there was no cancer thankfully and the it was just the left ovary COVERED in cysts which actually made it one giant cyst (12+cm actually). They said it was just larger than a grapefruit, but smaller than a canteloupe. They took that out and everything else. I'm just taking it day by day. My incision is from my belly button down to my pubic bone. And it just HURTS. Not as much as it did a few days ago, but still. And that gas pain is brutal!!

But I'm ok and I can only do things a little at a time, so for now I'll leave it at this. Thanks for all the prayers and well wishes and texts and visits and gifts. It's truly appreciated!

Night before surgery...

Twas the night before surgery and all through the house,
the kids were playing nicely & hubby is watching House.
My bag is all packed and I'm ready to go!
Hope I didn't forget to tape my favorite show!
I'm nervous and worried but hoping for the best.
Soon this will be over and I'll get a lot more rest!

Ok, well it's not much but it made me think of that as soon as I typed the title in. hehe! I have to be at the hospital at 5:30am. Yikes! And poor hubby!! So that means surgery is about 2 hrs later than that. So I should be under the knife at about 7:30-8am. The surgery is about 2 hrs long, so I should be done by 10ish. This is of course the best case scenery and nothing goes wrong, which is all I'm going to think of.

I got my hair cut today, finished up all my errands and I think I'm ready to go and just get this done. Praying that I have good nurses and that nothing else goes wrong before, during, or after. So that's all I ask for. Good thoughts and/or prayers. I will be home on Monday and hopefully will post back then and let everyone know all the gory details. : )

Crazy week of worry!

I have sooo much stuff to do before Friday. All last minute things of course. I can get it done. I just have to!!

Just wanted to go back a minute tho. From my post about being sick last week. As it turns out, I believe I had food poisoning. I had McD's for lunch the day before I got sick. It seemed late that I got sick, so I don't know. It could've been anything, but that just seems like the most likely cause. Either way, it will probably be awhile before I ever go back.

I was sick for 3 days after. Nothing more than just feeling low; light-headed, dizzy, and just overall icky. I didn't eat much as that twang of nausea was still there waiting. I had my preop on Friday and I still had a slight temp then too. Told the nurse what happened tho and she said it would be ok. I had blood & urine taken, EKG & chest xray done. Pretty normal I guess. I made sure the nurse that registered me put everything down that I asked her to regarding my meds and whatnot. She was soooo nice, she talked with me for over 45 minutes!! She also confirmed with me that this was routine and that I would be O - K. :) That helped some.

Then Friday afternoon I went to see my gynecological oncologist (GO). He didn't think it was cancerous either as I guess the tumor/cyst is very proportional. There's no blood flow to or through the cyst, so he too thinks it may be endometriosis. So I'm thinking more positively. If it is cancer, it's very very early, but no one thinks that, so it's good. One thing that threw me off was that he wanted to do an internal. I was not expecting, nor was "ready" (if you girls know what I mean) for this. I was so embarrassed. But he said everything was fine and he felt it would be a quick operation - in and out - and I would be fine. He did ask about children and to make sure I wanted everything and I said yes. He said it was a good decision, but he does like to make it our decision. He was nice.

So now I wait. And wait. Friday is the day and I don't know what time yet. Hopefully early. I have to call on Thursday between 2:30 & 5pm to see when they've scheduled me in. My MIL will be here to get the kids to and from school and get them fed & whatnot. Hubby will be with me. He does have to work Saturday morning, so that worries me that I won't have anyone there, but hopefully I'll sleep til he gets there. Then I will be back home sometime on Monday.

Trying not to worry or be scared, but it's hard. But it's the waiting that's the worst!!

AI truly sucks....

24 hours ago, I've never felt so bad. I probably felt that way after pit surgery, but at least I had anesthesia to keep me from really feeling it. I don't know what happened, as it just came out of no where. It happened in the middle of the night. I woke up about 2am from a nasty little nightmare. I was shivering cold and could not get warm. Then all of a sudden I had to go to the bathroom. I barely made it to the bathroom cuz I was so weak & woozy. Sure enough (TMI sorry) I had diarrhea. I knew right then and there I was going into AI. I called to hubby to come give me my hydro quickly. I took 10 in hopes that would help. I felt sick to my stomach tho and was sure I was gonna get sick. Thankfully I made it back to bed. Hubby also said I was burning up. Sure enough I had a fever of 101. He gave me some tylenol as well. Then I slept til about 6am before it happened all over again. I swore I was gonna pass out getting to and from the bathroom. I took another 10mg of hydro. I went back to bed and slept again. Got up again at 8am. Took another 10mg after barely returning from the bathroom. Slept again til about noon. I was feeling ok by then and finally ate some toast & part of a banana. I was still weak & felt like I couldn't get up and walk. My fever went down to 100, then 99. I slept on and off the rest of the day. By the end of the day, I took another 5mg and I could make it down the hallway and back but was still weak. I wasn't sure I would sleep at all last night since I'd slept all day.

Thankfully I did. I slept through the night and didn't have to go to the bathroom once. I managed to get up this morning, took 20mg of hydro, took a shower and get dressed. I took the kids to school and they were so good, I didn't have to get out of the car. I parked across from where they get out and let them go alone. They did so good. I waited til they went in their classrooms. Now I'm home sitting in my chair resting. I have to go get my films from the radiology lab for my appt tomorrow. Then I'm back home til I have to get the kids.

Whatever this is, needs to go away asap. I can't be sick before surgery. I need to get this thing out of my stomach. I can't lay on my stomach or my back cuz it hurts too much. So I've managed to get through this AI and I can get through this surgery!

Such a cry baby

I swear I'm crying over everything!!! And not in a depressed sort of way, but in a sad that things are changing so drastically. I hate change.

My gynecological oncologist appt got pushed back to the 15th. So more waiting I do. I'll also have to have my presurgery tests done this next week too. So I still wait and I still cry over things that just make me see "change."

I went to my daughters brownie meeting the other night to watch her get "pinned" and I started crying. Not cuz it was a great moment, but the fact that where we were was in the middle school where I had all my twin club meetings. They were 6 months old then and I used to imagine them running down the halls when they were 12 and all... But all of a sudden it hit me that they were going on 8 yrs old and how far we've come from those little baby days. No more babies for me. :( Now of course I knew this since my pit surgery, but having a hysterectomy is sooo definitive. I think I've said that before. I'm saying it a lot now, cuz it just IS. But it's what I have to do. This will be a good change. I hope.

There I go....crying again.

Happy New Year!!

Sorry I didn't post back right away. We were away, then coming home for the New Year... It's been crazy.

Anyway, doc called and said the blood test was slightly elevated. The high level of normal was 34 and mine was 36.4. He still thinks it could be endometriosis, cuz everything else is normal. Having been through Cushings, I know nothing "normal" is always good either.

So in any case, I will be having a full hysterectomy - including uterus, ovaries & cervix. They will do all the testing/biopsies that need to be done and if there's a malignancy, they will go in and take out my appendix and oomentum too. (Breeding grounds for cancer as I've been told.) They will do a vertical incision in my abdomen and I'll be in the hospital for 3 days. I'm scared crapless. And the last few weeks w/o my estrogen & GH have been pure hell. I'm emotional about pretty much everything and in pain at the same time. In fact, I've cried about being in pain. hehe!

I'm trying to be positive and know this is for the best and in the end it will be better. But it's such a definitive measure. I have to talk to the gynecologic oncologist next week and I'll get his 2 cents on all this too. I hope he's nice.

Waiting to make the call...

For some reason I'm getting nervous again. I haven't been nervous and I've been distracted, but now - knowing that I'm gonna talk to my doc tomorrow - I'm nervous. Please help me pray that things are negative. I just want this out of me and for that to be it. Nothing else. Is that to much to hope for?

Merry Christmas!!

Everything is going well here and the kids are very happy with what Santa got them! Me too in fact!

Quick update tho - doc hasn't been in the office, but I've now had an u/s, blood test for cancer markers and and MRI. Now I just wait to hear back from the doc on the blood test & MRI. Praying everything is fine and it's just a normal cyst that they can take out and be done with all this.

My family & I are visiting with family and I won't get to hear from the doc until Monday. Lovely.

MERRY CHRISTMAS TO ALL & TO ALL A GOOD NIGHT!!

Pelvic Mass

Those are big words, wouldn't you say? Doesn't sound good either. Nothing like a good worry for the holiday season.

Well that's what my ob/gyn told me I have. I had my annual checkup and during the exam, he asked me if I was pregnant. I said no. I was VERY sure of that. He said my uterus was as big as if I was 16 weeks pg. I was shocked. I told him I had no idea. I had no symptoms whatsoever. I haven't had a cycle since before pit surgery, so I have nothing to go by there. I was actually coming to tell my ob/gyn that I needed to adjust my meds again, cuz I have was having some "sex" problems. I thought I might need to add testosterone, since that was the only hormone I wasn't replacing. He said that was the least of my issues right now.

So tomorrow (Monday morning) at 10am I have an ultrasound. I guess it will give us an idea of what it might be and how big it is. I am VERY nervous/worried. I did go buy an OTC pg test just to make sure, since he didn't test in the office and sure enough it was negative like I thought. So tomorrow hopefully I will find out one way or another what we are dealing with. If I have to have any type of surgery, I am scared. Only my mom really believes this whole Cushings ordeal and she'll have to help make sure I get the right doses before, during and after any new surgeries. It's really the last thing I want to think about. *sigh*

I'm trying to be positive and we really had a good weekend with all this snow we got. Playing in the snow with my kids and then drinking hot chocolate by the fireplace with my family. It was nice. So a few prayers or well wishes would be appreciated for tomorrow! I'll keep ya posted!

18 months and counting!!

Can't believe it's been 18 months. Amazing! And I'm still doing well too! I've even noticed some things that didn't stick out before. Like bruises. I never used to get bruises. Everyone said that was one of the signs of Cushings, but for me it wasn't. As it turns out, I think when I got a bruise, I had so much cortisol in my body that it helped keep the inflammation down. Now, however, I get a bruise and it goes away normally. I always keep watch to see how long they last (cuz again the longer they last is a cushie thing) and it seems like they go away pretty quickly. I was even scratching my back against the door the other day and my skin turned all red! That never happened before either! I guess now my skin could be more sensitive or the cortisol just isn't there to help. Either way is ok with me.

My husband noticed the next thing. He said even tho I eat "bad" things, I don't eat a lot like I used to. Like my body has a true craving and when it's done, it's DONE. I couldn't eat a whole bag of chips or candy or anything now. I have what I want and I'm done with it. My portions in general are just smaller. I'm listening to my body a bit more and can tell when I'm just full.

I'm actually hoping for xmas to get a Wii Fit. I'm hoping that will help with the whole exercise thing. I'm not good at it during the winter months. When it's nice out, I'll go for a walk. During the summer I'll swim til my hearts content. During the winter months when it's too cold or too rainy....uhm... Well, lets just say I'm not moving much. I have some exercise videos, but it's not the same. I'm hoping one of the wii exercise games will be more helpful and keep track of my workouts. Give me a goal to shoot for. :) I'm about 25 pounds from what my weight should be for a "normal" person my height. Don't get me wrong tho, I'm ok with what I look like now. But it would be ok to get down a little more and really just to work out my muscles.

Since I can't take a larger dose of the GH, I really have to work out my muscles to keep them from disappearing on me. And believe me, I can feel that they aren't all "there". So we'll see what "Santa" brings for me in....ACK!! 22 days!!! Guess I should get shopping myself eh?!

Happy Thanksgiving!!

Hope everyone had a great thanksgiving and enjoyed their feast! I hope everyone was thankful for something or someone in their life. Me... Well, aside for my family, I'm thankful for my health and all my cushie friends that have been there for me throughout this journey. This would've been a harder/longer road to travel without them. This includes my doc in Seattle too. If I hadn't gone to him, I'd probably still be sitting home getting the run around. Yet here I am feeling amazing with my wonderful kids!!

Happy Thanksgiving!!

Rest of the results!

Ok, well the Nurse Practitioner called me yesterday to give me the rest of the results from my trip out there. So here they are:

Cortisol: 1.0 (range 4-23)
ACTH: 30 (range 6-48)
Cosyntropin stim test: 3.4 (18.1 or higher to know adrenals work)
FT4: .66 (range .93-?)
IGF1: 72 (range 109-?)

Dynamic MRI: no tumor or changes found

He didn't check my female hormones, since he really doesn't mess with that. I'm still trying to deal with those hormones here at home. But the ones above show I'm hypothyroid and still GH deficient. My ACTH is still on the higher end, but down from what it was just a few months ago when it hit 35. So I'm trying not to be concerned. It's hard, but still. I just don't understand why it's high and I don't think he can explain it either (or wants to!).

In any case, I don't have to go back for a year and we will do a cortisol recheck in 6 months via Medem. I don't have to have another MRI for 2 yrs or if I should recur before then. So not nice to think about. Blah.

But overall for now, good news! And I'll take it! :)

Back from Seattle with SOME results!

Ok, so my trip was nerve wracking yet exciting! It was also very emotional, cuz I've gone through so much there and have met so many people there and I still watch them to this day continue to struggle while I move on. . . :( I'm thinkin' of you guys and I hope you get answers soon!!!

But overall, thankfully I got good news. At least for now anyway. My morning cortisol was only 1.0 and my Cosyntropin stim test only stimmed to 3.4 (that's 1 point up from last September when I had it done & when it stimmed to 2.4). So it seems my adrenals are still asleep, as Dr. L likes to see a stim of 18 or higher to know the adrenals are awake. I don't know what my ACTH #'s are yet, as they didn't have them. Dr. L still said not to worry about ACTH levels yet tho. But I can't help it. They've always been high, so it's still concerning. He thinks if they are in the 20-30 range that my adrenals could be waking up at any point. He said I may in the near future try to really wean down more. So we'll see. Until I get those results, I'm not gonna think about it. I still feel great and I'm still down 32 lbs since surgery.

I did tell him about some of the symptoms I was concerned about and he said I sounded hypothyroid. So he did check that result and thankfully it was in too. Sure enough my T4 was only .66 and the lowest range is .61. The problem is, when I was on 150mcg of Levothyroxine I became hyperthyroid. Now I'm on 125mcg and this is the first time my labs have shown a low result. It's been "normal" for the last 6+ months! So Dr. L suggested I get my PCP at home to order another thyroid blood test and then send him the results. Then we'll decide what to do. Is their a median dose between 125 and 150??

I sent a request to get my other results, so hopefully I'll get them in the next few weeks. Until then, I'm going to enjoy my holidays with everything I've got! :) For those that gave well wishes, thank you so much they worked! Thanks!!!

Off to Seattle

Well, I'll be leaving for Seattle tomorrow to know once and for all what's going on with me. To get a stim test finally and my yearly MRI. Hopefully it will bring good news. I can only pray anyway. I'm just gonna think positive until I know otherwise.

We will arrive in Seattle at 3pm PST and hopefully I should be at the Inn by dinnertime. I have all my testing on Monday, starting with bloodwork and the stim test at 9am. Then at 11am I have my MRI, followed by the visit with Dr. L at 1pm. Hopefully he has some of the results by then. He usually does, so we'll see. Then we (meaning my mom and I) will be heading home. She'll go back to Chicago (after visiting with us for the last 2 weeks) and I'll come home to NJ.

So wish me luck!!

Oh how sick I got...

And not from the swine flu. I think anyway. Monday night, I did NOT feel good. I had the runs, and the chills and was sure I was getting the flu. I totally stressed myself out and I was totally sick to my stomach. I was sure I was gonna get sick. Thankfully hubby took over and took care of the kiddos and I went to sit down. I hadn't eaten anything since lunch (which was a Salad Works salad) and I just didn't want to. I tried to down some Propel and saltines, but my body wasn't having it.

I ended up sleeping in the chair that night as I didn't want to get anyone else sick (or have my kids see me get sick). Thankfully I was fine. Whatever it was went away and it was made better by taking 20mg of hydro Tues morning. Then it hit me!! DUH!! WhenEVER I get the runs it takes my body down ten fold. I didn't think to stress dose, which is stupid cuz even if I was nauseous I should've taken something. Was afraid I'd puke it up. Once those meds hit my body, I felt progressivly better and better.

I only ate toast and some cheerios yesterday, but I'm feeling better now. I took another 20mg this morning, just to be sure. I figured I'd stay on 20mg for a couple days then go back to 15mg. I can't believe it's almost been 18 months postop and I'm STILL not good at figuring out my body's signs. :( I'm just glad it's not the flu. Yet. But my daughter is doing better thankfully and my son has yet to get it as well. *knock on wood* I'll keep ya posted.

Meeting the swine flu. . .

It seems my kids school has a case of the swine flu going around. The "odd" thing is, most of the docs around the area are just calling it a "bad virus." But it's a HIGH fever that comes out of nowhere followed by a really bad cough. And that's the "mild version." The moms, including myself, know better. The CDC has said those symptoms are those of the swine flu. So why is the medical community not really dealing with it??

My daughter has this illness; came home on Tuesday with a fever of 102. She was fine before that. For the last 3 days, she's had a fever and then the cough started. But those are the only symptoms. Thankfully she's eating and drinking just fine. I'm just waiting for it to hit my son next. And me. I'm the one that's most susceptible to the worst parts of this flu. I'm taking in as much vitamin C and stuff as I can. And of course the docs are all out of the regular flu shot, so I'm worried. But time will tell. For now I'm just exhausted dealing with my daughter and worrying about if my son will get it. And my back is taking a beating. But I can't see my chiro, til this is over. I just pray it's soon...

WTH is going on with me?!?!?

Ok, I was on day five of being on 10mg when I got a vicious headache. Now mind you I started taking my shots again and I put a new estrogen patch on. So let me get this straight.... estrogen can lower cortisol??? I'm not sure that's what I've read previously, but that seems to be my case. I took some Excedrin just to see if it was a regular headache. Eventually, my headache did go away. BUT it came back with just as much force after the Excedrin wore off. So yesterday (Monday), I went back up to 15mg of hydro and so far my headache is gone. I'm still not sure what to think and I have no idea wth is going on with my body. I guess I'll just stay put at 15mg for now and wait til I see Dr. L next month. But that nagging worry just won't leave me.....

Another update...Sorry it's been so long.

It's been crazy the last 6 weeks. The kids went back to school on the 8th, my 9 yr anniversary was on the 16th, I got an EVIL cold on the 18th and that alone took me out for 2 full weeks. I was exhausted and felt the worst that I've felt since surgery. I saw both my GP and ENT who both said it wasn't a sinus infection or flu, just a really bad cold. I just have to stress the REALLY.

Once the cold started going away, I must've coughed and pulled my back out. It's been over a week now and my back STILL hurts. I've been to the chiro 4 times so far and he said it's going to take quite a few sessions. I'm actually thinking of doing acupuncture to help as well. I just don't know WHAT is going on. And of course knowing me...I panic. The Cushings might be back. SOMETHING is going on and I have to figure it out myself. So I weaned from 15mg to 10mg. Last time I did this, I felt awful. Truly terrible. This time....I'm totally fine. Still have back problems, but no weaning affects. That scares me. I've noticed I've gone up on the scale about 5-10 lbs too. And my stretchmarks are more obvious. I even think I've noticed that my thumb/wrist pain comes and goes like it's cycling... I'm gonna have to start to really jot everything down. :(

Is this how it starts? When someone believes the Cushings is back? I don't know. My skin is still soft as ever, not oily...my anxiety isn't there...my face still looks thin...for now. I don't know. I do know I haven't been good about taking all my meds. I forgot my estrogen patch for a week, would that matter? I haven't been good about keeping a schedule for my GH shots. I take my thyroid and hydro in the morning and that's it. I've been feeling fine for the most part! Minus the cold and my back of course.

I'm making myself get back on track with all my meds. I've been debating about calling Dr. L and telling him about the meds change. I see him in a month and will then. Maybe for now I'll just stay on 10 and see how that goes. If I feel the need to wean again, I'll call Dr. L. I just don't know what's going on and I have to tell ya...I'm really scared. :(

Cortisol blood test results!!

My cortisol level for Saturday morning was 1.8 and I still can't believe it's that low!! But I'm happy and content again for the next 3 months!! And I have my official date for my yearly/18 month visit to Seattle. It's Monday, November 16th. So I'll go out on Sunday night; have my stim test done, my yearly MRI done and then an appt with Dr. L on Monday. Then I'll come home on Tuesday. Short and sweet, just like I like it. Enough to say hi to all the wonderful people that took care of me while I was there.

So all is well at this point. My cortisol may spike next week when I stress out about the kids starting school again. Still can't believe this summer is gone! It's truly gone too fast!

Quick update...

I'm going for my blood test tomorrow morning to check my cortisol again. Then soon after, I'll do a phone MEDEM with Dr. L to talk about the results and the few questions I have. My only concern is that he's not running an ACTH level. Isn't this disease all about that level?! So I'm trying to make an appt with my PCP to have him run an ACTH. If I can't get him to do it before my medem with Dr. L, I'll just ask Dr. L to do one then. I know how he'll react tho, saying that if my cortisol is low, I'm still ok and won't need to check my ACTH. Those of us that have Cushings, know otherwise. I'm getting up bright and early now, so I'm sure my cortisol is up there to make me get up. It's always been the ACTH I'm worried about. *sigh* I'm sure it will all work out. I'm not worried about it per se, more like frustrated.

But I do have my date to go back to Seattle. Nov 16th. I'll have an MRI then, a CST done to check my adrenals, and of course bloodwork to check pit function in general. We're hoping it works out that my mom can come with again. It's nice to have her company there.

As soon as I get my my bloodwork results, I'll post again.

Back from Washington, DC!!

Just took a 4 day trip to DC. Talk about a LOT of walking and a HORRENDOUS amount of heat there! I actually had to slow down a LOT and probably drank over a gallon of water a day. (Drank about half of my sons bottle of Gatorade too.) I did good tho! I was out like a light at night and slept good and was up and ready to go the next morning! I ended up taking my meds at about 7-7:30am, so I could eat before we were out the door by 8:45am.

We took the metro train (think subway) into the city and that was cool. Well it was hot as heck down there and there was a TON of people going to work, so it was a madhouse...but it was interesting to see nonetheless. Much nicer than the NYC subway stations too I might add!! The hotel and the museums were nice and refreshingly cold and all the stuff we saw was great. I wish the kids would've understood a lot more, but they got the basics.

We also took a bus tour, which was good for me to ease up on all the walking and that was very informational too. The one thing I wanted to see and didn't, was the White House. I was sooo bummed! I think I got a quick snapshot of the white house, but if you didn't know what it was, it would just be another scenery shot!!

Overall, I'm still feeling good tho. Ate way too much, and the food wasn't even all that great! My wrists are still acting up here and there, but for the most part, I only wear my braces at night. I tried to go w/o them one night and within hours my wrists were popping all over. It was a very uncomfortable feeling. So now I don't go to sleep w/o them.

I should be getting my blood test done next week to check my cortisol, then doing a MEDEM with Dr. L. We'll talk about my freckling and see what comes next. Then school starts in 2 weeks and the kids go back and it'll be quiet around here again!

Crazy overly eventful week!

Since Saturday night, I have not felt right. Upset stomach, weak, dizzy, and just overall blah... I have very little appetite and what I do eat seems to go through me.

Last Saturday, we went to Great Adventure. We had a great time and I did fine walking around. I even went on a few roller coasters, none real big tho. But of all things that affected me, it was the tea cups ride. The spinning set it off. I've never really had issues and maybe it's an age thing more than anything, but OMG I felt AWFUL when I got off that thing. Like I just wanted to lay down and sleep. And at the same time I felt sick to my stomach. I should've stress dosed at the time, but I figured it would go away. It didn't. So I took 5mg of hydro and went to bed. I was out like a light!! The next day I felt ok in the morning, just weak and a little queazy. I didn't do much at all, laid around most of the day and did go in the pool a bit later in the evening.

Monday and Tuesday, I hung around the pool with the kids, cuz it was so hot, for the first time this summer. I felt ok, but just didn't have an appetite. And when I did eat, I felt nauseous. Wednesday, we go to my IL's, where all the cousins, grandkids, etc get together to swim. Well of course it was raining that day and it was terribly humid. I don't do well in the heat. Again, I felt horrible when I got home. So bad, the kids had to feed themselves cereal for dinner. We all went to bed at the same time, cuz I just could not stay awake. My body needed to recoup again.

I was worried this morning, that this icky feeling would continue. I went ahead and took a full 20mg this morning in hopes that helps. Thankfully it did. I ate a little more today and no runs. I made sure to eat bananas and drink some Gatorade to help. I think it all did.

I know I did a LOT. I guess I still don't know my limits. I also just think maybe I ate something bad too. Or maybe too much sun?? I don't know. But all day today, I just sat around and really did nothing. It was raining out, so no pool time. I definitely needed that "down time." Hopefully tomorrow, I'll be raring to go again!! But I'll know to slow down a little and rest more!

14 month post op update!

Sorry I've been slackin'!! July was a busy month for us! Lots of playdates, vacation etc. The kids and I flew to Chicago to see my parents for 10 days. We had a great time! It finally hit me about something tho. Whenever I get stressed out, overdo it for the day, get worked up or upset about something, (or even have the runs in the worst way *blush* ) my body just gets REALLY really tired. All of a sudden I just feel like I could sleep, as if my body is saying "Quick! Shut down to recoup!!" hehehe!! I would be out like a light! Happened quite a few times while I was away. I've noticed it at home, but it wasn't as obvious I guess.

But I was totally fine on the whole trip and even enjoyed a good walking through the city of Chicago with my brother and a tour through the Harry Potter Exhibit. It was awesome! And then when we got home our inground pool was finished being built and we've been swimming in it whenever the weather allows! But the one downside is I'm freckling a LOT! Just another thing to worry me. I'm not having any other symptoms, but all over my face are these freckles!! My mom and even some of my friends think they look good on me, but I've never had them in my life!! So of course since my ACTH has been high, that's the first thing I think about vs the sun. Yeah, I've been spending time in the sun, but yes, my ACTH is up there. I dunno. I'm trying to get ahold of Dr. L to get a cortisol/acth level checked. It's been over 3 months, so it's time.

Other than that, we have another little vacation planned. Hubby and I are taking the kids to Washington DC to the museums and whatnot. Should be fun. Then school starts for them not long after that. I'm hoping to get back out to Seattle in November to get my yearly MRI and an adrenal stim test done. Waiting to hear back about that as well.

Overall, everything is still good! Really trying to enjoy my summer this year!! :D

Happy 4th...a year later!

I was reading last years post when I was just 4 weeks postop, and WOW how far I've come!! That was also the time when I had my pharmacy error when I had 5mg and 10mgs mixed together! Thankfully that was resolved, but I still to this day check to make sure!! I have all 5mg tablets now, so it's fine, but still. Ya never know.

I also feel better than I did then. I can wake up early and get up and go! I'm not tired and I'm actually getting my stamina back!! It was nice to go to the fireworks and really get into it with the kids. Although, they are getting to an age, they could take them or leave them. Ah well.

My wrists/thumbs are somewhat better, but I still wear the braces often and take Advil to help with swelling. I've also gone to my chiropractor, and he has this laser light that is supposed to help the swelling as well. However long I can put off surgery, so be it. :)

So I'll leave you with my annual picture of me and my kiddos on the 4th. Maybe I'll put a then and now pic from when they were just babies...I miss my babies.... Happy 4th tho! :D

De Quervain Syndrome

Yep. That's what I have now. Both my thumbs, but especially my right since I'm right handed, are in pain. It's basically a form of tendonitis. I have braces on both hands which go up to my thumbs and I'm taking a high dose of naproxen sodium to help the inflammation. *sigh* So it's hard and tedious to type. So I may not get to post much for awhile. Just wanted to update.

More info about De Quervain Syndrome.

Adrenal insufficiency or something else?

This weekend was really weird. Now this is going to be a little TMI, but for some reason I had a bad case of the runs this weekend. And as you may or may not know from previous posts, getting something like that WIPES ME OUT. I'm not sure if it was something I ate or a case of AI. All I know is that I couldn't do anything as I felt sick to my stomach, was weak and dizzy. I was afraid to eat anything for fear it would keep happening. I ate tons of bananas and drank gatorade to keep me hydrated. It lasted 3 days. That's it. Is that odd or what?

Now I didn't do much Friday or Saturday, but Sunday we took the kids to the Race Track to see the horses run. This was their first time and while I didn't feel I could handle it, I went anyway. I was cold all day and couldn't get warm and then those dang runs. That's why I think it was AI. Sounds like AI anyway. I mean it was 70+ degrees out! If we got in a shaded area, I felt colder! Again, just odd. After the races we went to play mini-golf and I chose to sit that out. I sat in the car and rested. We went to dinner after that and I ate and thankfully, since yesterday afternoon, I haven't had the runs. It's like it just stopped. I almost stress dosed, cuz I just wasn't sure. I've slept really good the last few nights, so who knows.

I really am going to start getting out to walk around the block. I've been doing an exercise tape, but I think walking would be better for me. We'll see. I'll get another cortisol/ACTH test done in August unless another doc tests it first. But that's a whole other days post.

Summer colds and GH deficiency

It seems I got lucky making it through winter w/o any colds. I didn't go into the kids school rooms to help out much like I did last year in hopes of keeping myself healthy because I was worried about ending up in the ER. Seems it's worked so far. But with the warm weather coming back, a cold finally found me. And it knocked me OUT. I was sooo tired, I couldn't breathe, and was even worried it might turn into a sinus infection. Thankfully, unlike before, this cold didn't last long! I was out of it for two good days and the others I just felt icky. I wouldn't say I have all my energy back, but I am feeling much better than before! I threw my sister-in-law a baby shower this last weekend and I think the stress of it all, lowered my immune system allowing the cold to find me. But now that that's all over, and the cold is gone, I can get on to enjoy my summer! The kids only have 4 more days of school!! I missed this last year, so I'm soakin' it up this year!! :D

Also, I took my blood test last Friday to test my GH and thyroid and they must have done it like super quick! Dr. L called me on Monday and gave me the results. Let me explain first. Three months after surgery I was put on .2mg daily of GH because my IGF-1 was 50 (and the low end of normal range was 109). After 8 weeks of that, I took another blood test which showed my levels were only at 100. So Dr. L moved my dosage up to .4mg for 5 times a week. I did that for a month, only to call him back saying my carpal tunnel hurt REALLY bad. He told me to lower how often I took it to 3 times a week and move it up when I could. Well 3 times a week seemed good for me and then when my carpal tunnel got bad again I had hoped I could either move down a dosage or even off it. I felt pretty good, had some aches, but it wasn't bad.

So as it turns out, when Dr. L called me and told me my IGF-1 was 65, I about freaked. I could NOT believe it. REALLY!? That's it? Then shouldn't I feel worse?? I guess all those aches and pains I've been blowing off have been because of that. I was just shocked. So instead of coming off it or even lowering. . . I have to go up in the # of times I take it. So I'm back to 4 x a day. I may end up having carpal tunnel surgery soon...but time will tell.

My thyroid levels were "normal" so I won't have to worry about that for a year now. I'll probably just keep an eye on it locally. I am also going to call my ob/gyn to go back on estrogen/progesterone again. I've been feeling kind of down and yet all over the map. I'm going to see if he'll give me the patch again. Hopefully that will help better than the cream - and I won't have to worry about taking it every day. Dang hormones. . .

Happy 1 year to me!

It's officially been 1 year since my first surgery. Saturday will be the year from my second surgery. But in either case, I'm doing well, I've come a long way and I'm happy!! I can only pray now that I make it through the next year. I won't be greedy. I'll take what I'm given.

I have a blood test on Friday to check my IGF-1 and thyroid. We'll see if I get to lower either of those meds. So we'll see. One year. Wow....