Monday, December 22, 2008

I had a phone appt. with Dr. F. last night

WELL.... I think it was a productive appt. I'll be having surgery again at some point. I don't know when yet. He didn't clear me for surgery, but agrees I'm having what they call a "recurrance". He told me to do some more testing, and to get another MRI, to see if there is any tumor regrowth showing up.

We discussed the pros and cons of BLA and Pituitary surgery. I'm still leaning toward the BLA, but in reality, there are no easy answers. If I still have some pituitary tumor left, and I have the BLA, it can cause the tumor to start growing rapidly and you still have to do something about it, like gamma knife radiation. It can cause you to have Nelson's. I don't care about the Nelson's. That's not an issue for me. Gamma knife would most likely kill large portions or all of my pituitary. I'd lose some or all hormone function.

If I have another Pituitary surgery, I could lose some or all of my pit function. Dr. F. feels that being panhypopituitary is better than having your adrenals out. That surprised me. I don't feel that way at all. I'd much rather balance taking hydrocortisone and florinef for the rest of my life, than trying to balance many, or all of my hormones for the rest of my life. Having hormones messed up makes you feel AWFUL, and it is hard to balance. I've watched people do it over and over. You adjust one hormone, and it throws another out of whack. You get it right, and something else goes whacky. It's too hard, if you ask me. There is a CHANCE I could be cured with one more pituitary surgery, but there is no guarantee. That would mean I could eventually be off of all hydro and be done with it. BUT, there is also the chance they wouldn't get it all, and I could still be facing more surgery. That seems to be more often than not from what I've seen. I've even seen people who were cured, come back after 5 yrs. or so with a recurrance. I'm not thrilled at that prospect at all.

His game plan is to see what the MRI says. If I have another pituitary tumor growing, he said he would recommend another pit surgery. If there is no tumor showing, then a BLA. He knows I prefer the BLA over pit surgery, and he understands why. He's basically leaving it up to me. He said to think about it for a while, do some more testing, and then we will see where we are once we get some more results back and whether there is a pit tumor or not.

So, that's where I'm at. It looks like 2009 is going to be another expensive year! Yay! NOT! I want to be done with this! The other thing with having another pit surgery is that if it doesn't cure me, I'll have to wait until I wean again, see where I'm at, do some testing if I feel I still have it, and then face ANOTHER surgery! I don't want to sign up for that program, thank you very much! It seems that there are no easy answers with this disease! I'm just glad that he sees what I see, and agrees it's a recurrance.

Wednesday, December 17, 2008

Almost 17 weeks post op

Last Thursday, I went to see my local endo again. I ran out of gas going up the exit ramp! What a mess! I got out and started walking, and some nice lady picked me up and took me to my doctor's appt. She lived close to my doctor. I was so thankful that she stopped. It was cold outside!

My doctor seemed a bit baffled. All of my lab stuff looks good, so we can't blame anything on thyroid (she says) or any of my other hormones. My face and neck was getting really red while I was there. I told her to feel it, as it is hot to the touch. She asked if anyone had ever checked me for a carcinoid tumor before. I said no, so she wants that checked. It can be an ectopic source for Cushing's. It also goes along with MEN1. I'm doing a UFC for that test right now, and I'll do a blood draw for it tomorrow. I don't think that's what is going on. I sure hope not anyway! I don't want to have to go through Chemo! So, I'm hoping it just rules that right out, and I'll just be looking at dealing with regular ole Cushing's. It's bad enough by itself!

I've had a headache all day. A dull headache, that just bugs you. I hate it that I can't sleep right. I go to sleep, and get up off and on all night. When it gets closer to morning, I can sleep real good and stay in bed for hours without waking up then.

I have a phone appt. coming up on Saturday night with Dr. F. I'm wondering if some of my labs caught his attention. I had the ACTH stim test done twice. It was the low dose stim test. My cortisol almost quadrupled from the baseline number, the second time I had it done. The first time was more than double. I've read that a normal response is double. If it is higher than that, it indicates Cushing's. I think my quadruple response would indicate that I still have Cushing's!

I hope we can get it all figured out quick and just move on. I still feel better than I did before surgery, but not as good as I did after surgery. I'm feeling worse all the time. I dread going back to that place! I was almost in tears tonight, just because I've been feeling so bad, and I don't want to feel like this. I've had indigestion so bad, I've had to sleep sitting up on the couch! I just want to be normal and feel good. I can't wait to hear what Dr. F. has to say on Saturday!

Tuesday, December 2, 2008

Almost 15 weeks post op update

I'm going to be 15 weeks post op tomorrow. I went to the ENT and got my scar tissue shaved out of my nose. It wasn't bad, but I'm glad it's behind me!

I called my PCP's office today, and talked to the nurse. I told her I wanted some orders to do some midnight blood draws and some 24 hr. UFC's with 17-OHCS in them. She said unless they called back and told me otherwise, the orders would be sent over to the hospital where I get the draws done. I never heard back, so I'm assuming they are there. Back to testing for me!

Hearing that others have lost 30 lbs. while still on 20 mg. of hydro, and I'm totally off of hydro and not losing anything, makes me think I'm not cured. I'm not jealous at all. I'm thrilled for them! We all have such a battle with this rotten disease, and any good news from any of us is something to celebrate about. I quit the hydro shortly after my 13 week mark. According to my doctor, and I've seen the labs too, all of my hormones are good.

The return of symptoms just keeps adding up. At first, they were more subtle and not very worrisome. Now, they are things I just can't ignore. More symptoms started popping up just in the last few days. My brown spots are getting very dark again. That tells me that my ACTH is high. They had pretty much faded after surgery. I had not really noticd them for a while, and yesterday when I looked in the mirror I about flipped! The one on my lip stood out like a sore thumb!

I hate Cushing's! I had high hopes that I was cured after surgery when I crashed so low. The lack of progress has sunk those hopes. I suppose there is still a slight chance that I do have a cure, but I'm not seeing it right now. I feel like I'm slipping back in time and I want out of this time warp! I really felt cured for a while! It was great while it lasted. I want to feel that again. So, I'll keep pressing on. Maybe my tests will be low, but I have a feeling I will see something otherwise. Time will tell. If I still have Cushing's, I hope I get highs off the bat!

Sunday, November 23, 2008

13 weeks post op?

I'm losing track of time now. I forget how long it's been since surgery. I think 13 weeks. I have not updated because there is nothing to really update. Everything is still pretty much the same. The only thing different is that now I'm swollen and sore everywhere. I'm not sure why. I am going to have to go off of several meds and see if that makes it better. I'm wondering if I have a build up of something I'm taking, that is causing this joint and muscle pain. I've been at 2.5 mg. of hydro for a while, and I've been just fine on it. In fact, I was due for a wean again, but I can't do it just yet. I'm going to alternate not taking anything, and the 2.5, every other day for this coming week. Then, I hope to be totally off of hydro the week after Thanksgiving.

I've been busy getting my house organized. It's so great to get things cleaned up and in order again. I can't wait until it is totally done! I still have to dig out all of the winter clothes for everyone. We've been digging through boxes as needed.

I still look about the same as I have been lately. Nothing much has changed that way. Once I'm totally off of all hydro, I think my doctor is going to put me on thyroid meds. She said if she gave it to me now, it could make me have an AI episode, and she didn't want to do that to me. She wants me off of all hydro first. Here are my most recent pictures.

Saturday, November 8, 2008

11 weeks post op

I'm a bit late posting for 11 weeks post op. Oh well! After my last attempt to totally wean, I went back on the hydro. I went to 10 mg. and that was too high. I went down to 7.5 mg. and stayed there around a week. I went to 5 mg. on Thursday. I'm doing good. I had that whole episode with the "low" feeling the day I had to go back to see my endo, but I later figured out a huge part of my problem was that I was having a reaction to the Levaquin. It took me a long time to have a reaction. The first 2 weeks were fine. Starting the 3rd week, (also when I weaned) I started having pain. I thought it was all because of the wean, but it wasn't. Going back on the hydro didn't take the pain away. It was the Levaquin! Going off of it took the pain away! So, I took all but 4 pills of Levaquin, which helped my sinus infection tremendously!

I have to go back in Dec. to get some scar tissue shaved down in my nose. It's part of the reason I have a sinus infection problem. My nasal washes are not reaching it good.

I haven't heard the latest lab results yet. I do know my endo is watching my T4, as it was really low in the normal range. I'm almost hypothyroid. She is watching that, but she said giving me thyroid meds while I'm still on the hydro could make me have an AI episode, and she didn't want to do that to me. So, she tested my TSH and T4 again last time I was in there. She told me to get back into the office as soon as I weaned totally, so she can do another adrenal stim test. What do you want to bet that my adrenals will stimulate after that big dose of ACTH? LOL! They did last time, so I don't see why they wouldn't this time too! Anyway....

I'm doing pretty good. Just the same old stuff. I had a headache today, and some diarrhea, feeling pukey... all that normal weaning stuff. It makes you feel yucky, but it is not intollerable. I also sleep alot in these times. I was in bed most of the day. I'll be so glad when I am totally off of hydro!

I really don't look any different than in my last pictures (I don't think). I haven't lost more weight, and that won't happen until I'm off of the hydro and get my thyroid straightened out. That's ok, I'm pretty patient. I'm just happy that I feel better. I feel consistant. Losing the fluctuations in blood pressure, and losing the heart palpitations were worth the surgery, even if I never had any other improvements! But I do! Ha! My fingernails are still going strong, and that is just unbelieveable! I've never had nails like this in my life! I've whacked them on all kinds of stuff, and they have not broken off! I'll have to take a picture of them before one of them breaks because all 10 of them are LONG! I'm kind of letting them go to see how long they will get before they break. LOL! I might just have to break down and shorten them though. My hair that is closer to my scalp is so much more healthy! It' soft, silky and shiney! I also have lots of little hairs coming in. It has gotten thicker. I have to use bigger hair barrettes than the itty bitty ones I use to use. I'll try to update with some new pictures soon!

Thursday, October 30, 2008

So much for the "final" wean! LOL!

Well, it caught up with me! I got my shower to get ready to go to the doctor, and I couldn't get dressed! I kept feeling like passing out. I took my bp and it was 96/69, and I didn't take my bp meds. I knew with dropping my hydro my bp would drop too. At least I didn't take the meds on top of it! Anyway, I had to end up taking 5 mg. just so I could get to the doctor. That was enough to perk me up and raise my bp! She was kind of upset, not majorly, but she was going to test me again today. She couldn't do it since I'd taken the medicine. Oh well. I told her I had to, just so I could get dressed and get there! She wasn't mean about it. She is really nice!

All of my labs from the previous week looked good. She tested my thyroid again. She just wants to keep an eye on it to see if it goes whacky since it can after surgery. Right now, everything looks good. Since I had to go back on my hydro, she said, "Ok, you go back on it, and take it for a while, but try to wean off soon if you can. Then get back in here for another stim test." Then she said, "I don't usually let patients do that, so you should feel privileged." LOL! She was laughing. I really like her. She said she knew I was listening to my body and I'd been doing a good job weaning and I've made so much progress already, that she is happy with that.

My stim test was an ACTH stim test, not the CRH. I asked her how she knew my pituitary was giving the signal to my adrenals when we didn't do the CRH. I don't think she quite followed me, but she mentioned the fact that my ACTH before the stim test was 14. That is in range, and it does show that my pituitary is working again. She said that by taking the hydro, it is suppressing my adrenals. I see her point, but I also know that if it is not going to work, you can't force it either. She seems to think you can kind of force it to wake up and work. I really do like her. All I have to say is, she has never lived in an adrenally insufficient body. I don't care what any text book says, my body feels things that the text book doesn't tell you about. I'm all for getting off of the hydro. I don't like it, but I also don't want to end up in the ER with a crisis. Slow and steady wins the race!

So, I'm back on 5 mg. I felt good on that. I'll stay there for a week or so, then go down to 2.5 for a while before I go totally off of it again. Today is 10 weeks post op! Yay! I'm a Cushing's survivor!

Wednesday, October 29, 2008

I'm off of all Hydro!

Monday was my last day of taking hydro. So far, so good. I'm just sore and tired. I always get tired when I do a wean. I don't usually get sore. It's funny how each wean has been different. I usually get one or two symptoms of a low, but not all of them all at once, and they don't last long. With the next wean, I get different symptoms. It's weird how they rotate.

I'm going in to see my local endo later today. I hope it's a good report, that all of my other hormones are in line, and not out of whack. I'm looking forward to just getting stronger, and living a Cushing's free life. I'll post what I find out at the Dr. later today.

Wednesday, October 22, 2008

Woo hoo! Dr. says go off of all steroids!

I'm excited to hear this news from the local doctor. Although, they seem to think I can just magically quit taking them and be OK. I know better. You have to wean, not quit cold turkey. The good news is, I can wean faster than I have been. I did a stim test and stimmed to almost 20 so they say to get off of the steroids now. That means I'll lose weight faster now, and hopefully get my blood pressure back to normal, discontinue meds for that and other things along the way. I feel like I'm getting my life back, slowly but surely.

My worst day post op is much better than my best day with Cushing's! This feeling is so exciting! I still don't feel 100%. I still wear out easily and require a lot of sleep, but that is becoming less and less too. All good signs!

So, for recording purposes, my baseline cortisol was 7.49. After stimulation it was 19.35. I have currently been at 12.5 mg. I'm going to take 10 mg. each day for the next 3 days, and if I feel good enough, go down to 5 mg. for 3 days, then totally off. If I feel too sick, I won't do it that fast, and I'll just tell my endo I have to take it slower. Hopefully next time I post, I will be steroid free, and on my way to total recovery! Yay! They said I have to do the stim test again in 4 weeks. I guess to see how well I'm still doing without the steroids. I'm not sure.

Friday, October 17, 2008

Weaned again today

I decided to go down to 12.5 mg. of hydro today. So far, so good. It takes about 3 days to hit me though. I was starting to have some signs of a high again. I'm doing my stim test on Monday anyway, and the Endo may want me to go off of all of my hydro when I see her on the 29th. I'm not quitting cold turkey! I know better than that. Even if the stim test says I can go off of all hydro, I'm still going to wean down to get off of it, I'll just wean faster instead of dragging it out.

Thursday, October 16, 2008

8 weeks post op...Doctors, doctors, and more doctors!

I have been busy running to doctors appointments all week. I have more next week, and then one a week for the next 3 weeks after that!

On Monday, I went to the Dermatologist for a follow up on the moles she removed. The one was neoplastic hyperplasia. Not quite skin cancer, but people who have those are more likely to get skin cancer. Now I have to go in every year for a check up on all of my moles. Yay! Not! I do want to keep a check on it though. My mom had skin cancer, and I know I'm at high risk for it anyway.

Tuesday was my relax day. I went for a body wrap in the evening. That feels so good!

Yesterday, I went to the ENT. It took me a long time to get in, but it was worth it. He suctioned stuff out of the back of my nose, where I cannot reach, nor blow it out. My nasal washes were not making it budge either. Basically, I still had a small scab at the surgery site, but it was green, with other green goo. He put me on 3 weeks of antibiotics. The first 2 rounds of 10 days each didn't kick my sinus infection. Hopefully this will! He also said I have some scarring and my septum is kind of glued to the outside wall of my nose. He is going to get rid of that for me too. He can do it in office. That will be in about 3 weeks when I go back for a check up. He said that just happens sometimes when they do any kind of surgery up there around your sinuses.

I'd taken the girls with me to Columbus. They had to get some teeth pulled yesterday. We had time to kill, so I thought I'd go to my Endocrinologist's office, and get some blood work done. I'm going to see her on the 29th, so I wanted to have blood work done, to go over with her. They use to do walkin lab appointments. I found out yesterday that they quit that, but they did have an opening, so I only waited about 20 min. As it turned out, I didn't have any blood drawn. The nurse went to talk to my Dr., and she wants me to have the adrenal stim test done on Monday morning. So, I'm waiting to get blood work done until then. That means another long day in Columbus. ~sigh~! I have to be in her office at 8 am for that stim test. It takes an hour or so. It will tell if my adrenals are working good, and putting out enough cortisol for me to go off of my cortef. Then I have a follow up MRI at 1 pm in another location in Columbus. I'm excited about the stim test though! It would be great to be able to get all the way off of the hydro! Once I can do that, I'll really start losing the weight. Anyway, after a busy day of running ALL day, I went to the pharmacy, then came home and got ready to go to calling hours for my mom's cousin. It is such a sad situation.

After all of that running, I konked out good last night. I still take half of a sleeping pill, just to make sure I sleep. The previous night, I had been restless, tossing and turning. I haven't done that for a while. I think it's time for another wean anyway. I've noticed that lately, I sleep better at night. For a while after surgery, I still felt messed up on my sleep. I'd be sleepy all day, but not at night. I'm still sleeping a lot in the day too, but I'm sleeping better at night. I feel like my body is slowly changing around, and that is exciting!

Today is another busy day. I have to go to the dentist for my cleaning, and I have to take Zane to speech therapy later. Tomorrow, I get to crash! Actually, this whole weekend is free. Andy said he has noticed that I'm doing better. I have days I can do more, but I still get so tired and I just have to rest. Last weekend we had our church picnic. It seems like I did something on Friday too, but I can't remember. Anyway, I didn't do anything at the picnic, but it wore me out. I got up and went to Sunday school and morning church service, and I was whipped! I came home and went to sleep! I didn't even eat anything. I slept all afternoon, and all evening. Andy called me after church was over at night, and I was still sleeping. The phone is the only reason I woke up. I stayed up for a few hours, and went back to bed and slept until almost noon on Monday, but I had to get up to go to the doctor. So, I'm able to do more, but I still get wiped out easy.

I "feel" really good. I don't have the heart palpitations, feeling like passing out, etc., etc., any more. When my hydro gets too high, because my body is kicking in, and I'm taking the meds, then I get the Cushing's symptoms back, and I know it's time to wean. I get hot flashes, indigestion, zits, high blood pressure and high sugar. Those are all signs for me to wean. The other thing that has had me not feel 100% has been dealing with this sinus infection. When I would get to the end of my antibiotic, I'd feel pretty good. It only took a few days for it to start acting up again, and me to start feeling zapped again. I think that once I wean off of all of the hydro, and get rid of this sinus infection for good, I'll feel like a million bucks! Here's hoping anyway! Maybe I'll add some pictures soon. I haven't seen many changes for a while. I'm kind of at a standstill until I wean again.

Friday, October 3, 2008

6 weeks post op

I'm doing fine at 15 mg. in the AM. I feel good on it. I got past the pukey feeling days, and now feel pretty good! I just finished the antibiotic, and I still have some sinus infection. I have an appt. with the ENT, but that won't be until the 15th. They couldn't get me in sooner. Turns out my doc retired, and I get a new one there. He's not new, just new to me.

I'm still seeing changes in the right direction. I can't remember if I posted it last time, but I've lost 5 lbs. now, and around 20 inches. My watch was snug when I bought it right before surgery. It is my medical alert watch. I could barely get it clasped. Now it slops everywhere. I have a picture to show how loose it is now.
I also have a picture of my nice nails! They haven't been this long for ages!

I'm also posting some pics of the morning of surgery, and now, in the same dress. You can see that my sleeves were stretched to the hilt before, and now they are loose. You can also see that my stomach is much smaller than it was. It's still a long road to go, but I am seeing improvements! Yay! Even though it will take a long time to get back to normal, it still seems amazing that things can change so fast after surgery! I'm loving every minute of it!


Tuesday, September 30, 2008

~sigh~ I wish I had a brain!

I was going to go to the lab this morning, for blood work again. Mostly to see where my cortisol is. I totally forgot, and took my medicine this morning. Then, later I was thinking, "What all was I going to do today?" I thought of the lab and had a total DUH! moment. Maybe tomorrow, if I can remember! LOL!

I decided to go back up just a tad on my hydro. I went up to 17.5 mg. in the AM, yesterday. Today I did 15 mg. again. Tomorrow I'll do 17.5, then 15. Then, I hope to stay at 15. I didn't feel super bad on the 15, but worse than I had with any other wean, so I decided to go up a bit, and go back and forth for a while, to ease my body into it. We'll see how it goes. I lost a couple pounds and my blood pressure is doing much better on the lower dose!

Aside from all of the medical mumbo jumbo, I want to post cute things the kids do or say. This morning, Zane woke up and came to me. He is 4 and still has a hard time talking. He has to go to speech therapy. Anyway, he said, "I had a dream!" I asked, "You did?" He said, "Yeah, it was about Daddy and (something about a car)... and I had a hod attat!" (Heart attack) He says the cutest things!

Sunday, September 28, 2008

Up the hydro and DI woes

Today was the third day since I weaned. I've done ok. I felt pukey today, but not real bad. I was colder too. I decided to take 2.5 mg. tonight, to see if it helps me sleep better. I'd like to be able to sleep without having to take sleeping pills. I still feel high at night. I can't sleep without sleeping pills, and I don't feel pukey, I'm hot, etc. It sure feels like my cortisol is high at night. I figured I'd try some hydro tonight and see if it helps or makes it worse.

Last night, I started the pills of DDAVP. I still had some spray left, but I wanted to go to pills because sometimes, the spray seems to work too long, and I don't pee enough. Then, I swell, and have to take a day off of the DDAVP to lose some of that fluid again. Well, I took a pill, and it didn't do diddley squat for me last night! I was up all night peeing and drinking. Part of the problem was that it said to take the pill form 12 hrs. after my last nasal spray, only that would have put me off track for dosing. I use the spray at night so I'm not peeing all night. Well, 12 hrs. after that would be 8 am. You are supppose to take the DDAVP at night so you can at least get some sleep! I figured I must need a build up of it in my system for the pills to work. So, I used the spray this morning, about 12 hrs. after taking the pill form. That means tonight, I'm 12 hrs. after using the spray, so I'll try the pill again. I hope it works!

Saturday, September 27, 2008

I weaned again

Yesterday morning, I decided I would just do it. I weaned to 15 mg. in the AM. I figure I can always go back up if I need to. Today is my second day at this dose. I'm still not cold, or chilling, but not having an all out hot flash either. I was sweating a little earlier, doing nothing. I feel a bit pukey off and on. It's literally every few minutes that it comes and goes. It reminds me of a flickering switch.

My red marks that were in my stretch mark look better today. I still have this HUGE zit just under my jaw. I've had no other signs of withdrawl, other than the slight nausea. No diarrhea, no headache, etc. Well, I'll take that back. My muscles do feel like they've had a bit of a work out, like I've been exercising (I haven't), but it's not bad either.

Thursday, September 25, 2008

I don't know what to think...

I'm only 5 weeks out of surgery, so I'd say it's too soon to come to any kind of conclusions about anything at this point, but I do have some concerns.

I had my morning cortisol checked at 3 weeks post op, and it was 5.9. That's not so bad, but it's also a bit concerning when it was down to 0.7 just 3 weeks before. In one way, it's good that my adrenals and pit are functioning again. Here is what concerns me. I've weaned down to 20 mg. in the AM, and my plan was to wean 2.5 every two weeks from here on out, if I could. Well, before I even get 2 weeks away from a wean, I start getting "high" symptoms again, and feel my cortisol is just way too high. I don't know what to think of it. I don't know if it is because I was in a low just before surgery, (I know I was) and my body was use to that, or if it's because my cortisol is rapidly coming back up.

When I did my first 2 weans, they were 5 mg. at a time, in the PM. I did feel them, but not anything very bad. My withdrawl symptoms were very light. Then, I don't make it two weeks before I'm having hot flashes again, zits, indigestion, bruising, red marks, trouble thinking... need I say more? Oh and sleep? Well, I'm still messed up on that. I DON'T sleep at night unless I take a sleeping pill, period! I DO sleep in the day some days, and most days I sleep really late, and hate getting up. I can sleep without a sleeping pill for hours and hours in the daytime. It feels like the old pattern. I feel like my diurnal rythme is still flip flopped. Another concerning thing is with 2 sinus infections and a really bad cold, I never needed to stress dose, and never felt a difference! Infections are suppose to lower your cortisol, and I had no ill effects from it. In fact, when they started getting better is when I start feeling worse.

As for how I feel... well, I felt great right after surgery, when my cortisol was so low. My thinking was much better, I felt alive and like I wanted to do things. Now I have that blah, I don't care feeling again. When I wean, I feel better as far as Cushing's symptoms go, and just feel some AI'ish type stuff.

I partly wonder if my cortisol is going to a normal state so soon because I had a mega small tumor, and I had minimally invasive surgery. Then, I also wonder if it's because I was so low prior to surgery, that these replacements are just too much. I guess it could be a good thing to be able to wean off of the steroids quick, but then again, it makes you wonder if it really is a cure.

Eh! I guess it's one of those things where time will tell. I'd rather not think about it! I'll just call it a cure and go with that! Ha!

5 weeks post op

I'm now 5 weeks out of surgery. I am still dealing with this second sinus infection. If I could get over that, and stay over it, I think I would feel half way decent again. At least the cold is gone. I got a flu shot on Tuesday also. I hope I'm set for winter!

My weaning has not been very hard on me. I can feel it when I do wean though. It just seems that I'm ready for a wean even sooner than I planned. My plan is to wean 2.5 mg. every 2 weeks if possible. I'm getting new zits, and other markings. I'm getting some more hot flashes, a bit of indigestion, etc. Those are signs for me to wean.

On to other things! The kids are so funny! They have me laughing all the time. My youngest is 4 and he is starting to say all kinds of "grown up" things. One day, my 8 yr. old was suppose to be throwing some tea bags away for me. Instead, she decided to swing them around for a bit first. The bags broke open and the tea grounds were all over the floor. She was just starting to clean it up when my 4 yr. old walked in. He took a look at the situation and said, "That's quite a mess you got there Ryanna!" I don't think there is a day that goes by without something funny happening in our house.

Friday, September 19, 2008

4 weeks post op

I'm 4 weeks out of surgery now. I had a nose bleed Tuesday night that scared me pretty bad. It finally stopped. My blood pressure was high, and I think that was the cause. I weaned down on my evening dose of hydro. I got rid of it all together, so now I am only on 20 mg. in the morning. Here are some pictures of my progress so far.

I'm seeing positive changes in only 4 weeks. I can't wait to see what it's like by the end of this year!

Obviously, I've lost inches.
I don't have reflux now. I can eat tomato based stuff or chocolate without it burning.
My hair is softer and not so frizzy.
My nails are harder and growing really nice.
My skin is softer.
The body smell is gone (smelling sour even right after a shower). YUCK!
Hot flashes have decreased. I haven't had them in a few days since cutting my dose of hydro.
Less sweating, attributed to the above.
My face lost the redness, but came back some for this picture. (Hydro too high?)
Lost swelling. I had issues with it just the other day, again, I think due to hydro.

That's about it for now.

Friday, September 12, 2008

3 weeks post op

Well, I was feeling pretty good from the sinus infection, and then I got whopped with a cold! UGH! Now I'm miserable! If it wasn't for the sinus infection and the cold, I'd probably feel half way decent. Even with those, I did not have to take any extra hydro, and I've felt fine that way.

I've noticed the the excess hair on my face has thinned out. It's not totally gone, but a lot of it is, and what is left, is shorter. My face is not red now, like it was. I use to look like I might spontaneously combust! My stomach has flattened out a lot. I can't believe the difference in just 3 weeks! I still have some times that I get hot flashes, but they are less than they were.

I withheld my hydro yesterday, to get my cortisol checked in the morning. I don't have those results back yet, but I was not feeling sick at all. I've had a few zits break out, so I'm wondering if I might be on too much hydro now. I had dropped 5 mg. in the evening, starting last Sunday night. I did that just fine too. I had one day that my stomach was a bit upset, about 3 days after dropping the dose. That was it, nothing more.

Last night, I went to Wal-Mart for a few things. Everyone in the house is sick, and we needed stuff, so I went. I was not in there long, and not doing a major shopping trip. I felt really great at first, but it didn't take long before I started feeling like puking. I was surprised how quickly it all changed. When I left the store, and sat down, I felt fine after that. That was my first "big" excursion. I haven't went anywhere since surgery, other than the doctor and lab. I was reminded pretty quickly, how weak I still am.

Thursday, September 4, 2008

2 weeks post op

Well, it's after midnight, and I didn't plan on staying up this late. I'm usually in bed by 10 or 11 now. Quite a switch! So, now it's Friday. Thursday, yesterday, was my 2 weeks post op date. I'm feeling pretty decent, all things considered. I'm on an antibiotic for my sinus infection, and I used my neti pot tonight, which helped. For those of you who don't know what a neti pot is, they are these little pitcher type containers that look kind of like a genie lamp. You add water and this salt solution, and pour it into one side of your nose, and let it drain out the other. The trick is to breathe through your mouth, and don't stop! Otherwise, it will drain down the back of your throat. They work great!

Anyway, here I am 2 weeks later and several inches less! I took measurements right before surgery. Of course, the more points of measurement, the more it looks like you lose. I measured my neck, above breast, across breast, under breast, waist, hips/stomach together, 1 thigh, 1 calf, 1 upper am, 1 lower arm, and 1 wrist. The total loss for all of those points in 2 weeks is 12 inches, then add in an extra leg, and arm, and I have a total of 15 inches! Not bad! I have not lost weight yet, just inches. How's that for encouragement and a cure? I'm happy with it!

Tuesday, September 2, 2008

Life is good!

Today was an awesome day! I felt so good! So full of life again! I had energy! I wanted to "do" things. I wish there was a way to articulate just how bad Cushing's makes you feel! I didn't realize how dead I felt with Cushing's until being on the other side of it again!

Today, I did more than I probably should have. I just couldn't help myself! I took extra hydro to make up for the extra cortisol I had to be eating up though. Also, because I feel I'm starting to get a sinus infection, I'll need a bit more. I'm off to see the doctor about that tomorrow.

Today I did a little organizing of the aftermath of coming home from surgery. I had papers to go through, and things to get put away, etc. I did that and made beds and sorted laundry. I sat in a chair and had the kids hand me the laundry so I didn't have to bend over, and I put it in the bags it needed to go into to get separated for washing. I took the whole day to do all of that, and I took a nap in between, but I got some things done, and it made me feel good.

I have this different disposition! I want to take the kids to the park and watch them play, I want to do different things. Before, those things seemed like chores, and like they were more work than they were worth! It's really hard to describe what that is like when you have Cushing's. So, today, I really appreciated life and feeling good again! I told my husband I am really going to enjoy this new life of mine. He is thrilled that I'm feeling so much better. He said he didn't even care if I didn't lose weight (which I will), but he just wanted to see me feeling better, and able to do things again. I love him so much! He's a gem! Life is good! God is so good to me!

Friday, August 29, 2008

I'm a Cushing's survivor!

I made it! I'm on the other side of Cushing's! Surgery went great. It took a long time. I was told it was a difficult surgery. My tumor was very tiny, and it was between the anterior and posterior pituitary. I lost quit a bit of blood during surgery, but they got that stopped (obviously), and I'm doing good.

My surgeon is sure I have a cure. I'm pretty sure he is right too. After surgery for Cushing's, they check your cortisol levels, to see if they drop really low. If they do, that is an indication for a cure. They give you replacement cortisol, until your body starts making it again. The second morning after my surgery, my cortisol dropped really low. It was 0.7! What a sweet number to hear! The hydro they gave me immediately after telling me those numbers was even sweeter! I had been crashing ever since the surgery, and I knew it. I felt worse by the hour. I was chilling so bad my teeth were chattering, I had a headache, felt like puking, and I was so sore all over! I told the nurse I felt like someone drug me through a knot hole backwards, stomped on me, and ran over me with a train! When you've just had surgery for Cushing's, that's really good news! It doesn't feel so good, bit it is!

Now I have to go through this process of withdrawl. Not a fun prospect, but I think I'll be fine. I know what adrenal insufficiency (AI) feels like, and hopefully I will be able to stay on top of it. I hate having to go through feeling so weak and sick, but it's all part of the process, and I do look forward to that day, when I feel new and whole again. Even though I feel rough right now, I can tell I already feel better in some way. I can't quite put my finger on it, but it's there! I have not lost any weight, in fact, I've gained about 4 pounds. I have, however, lost inches. I don't know the total, but I know I lost 1.5 inches in my stomach/hip area already! That's an improvement.

At the hospital, they had me take 50 mg. of hydro at 8 am, and 10 mg. at 8 pm. The endo who diagnosed me usually has you take it at 8 am, and 1 or 2 pm. A lot of people can't sleep if they take their hydro later than that. If I take my sleeping pill, I can sleep like a log, and then I'm not feeling so sick in the mornings either. Their reasoning was that the last dose has to hold me through until 8 am. That makes sense to me. They had me on the 50/10 for 2 days, then I dropped to 20/10. That's half! I felt it. I felt OK, and slept most of the day. The next day was the day I came home, so I took 40/10 that day (which was yesterday). I went back to 20/10 today. I'll see how I do on it. I have a feeling that weaning will be a long process for me.

Monday, August 18, 2008

What a day!

Whew! I'm pooped! I've cleaned and cleaned and cleaned! My house is sparkeling and dust free! It looks awesome! Too bad it never stays that way on it's own! Ha! I love it when my house looks like this, I just don't like how I feel when I do it! This will make it easier for others to keep up on, and take care of while I'm down after surgery. I'm ticking off my list! I'm down to paying bills, doing laundry, grocery shopping, and packing! I'll do the bills in a little bit, and everything else tomorrow. Tonight, my husband said, "I hope you plan on resting up when you are in the hospital!" He says I'm having the "nesting" instinct and I'm about to give birth... to my tumor! LOL!

Making progress...

My husband and the kids helped me get some things done this weekend. I got my bathrooms cleaned, and the kids' bedrooms and closets cleaned. That was a major project! We moved all of their dressers to the basement where the laundry is! That will make laundry easier, and it also gives them more space, and makes their rooms look better. Now they have no excuse to have clothes on their bedroom floors! I still have a lot to get done, but I should be able to do it all in the next 2 days. I feel like I made a lot of progress! Now, to tackle the mountain of laundry. I call it Mount Washmore! I get it caught up, only to get behind again. With a family our size, it doesn't take long to get backed up!

I've been thinking about surgery. I'm not sure what to expect. I do, but I don't. Since everyone reacts differently, I don't know what MY body will do. I wonder if I'll crash, if I'll be puking, freezing, etc. It will be a good sign if I do, but doesn't sound like too much fun! LOL! I guess I'll be finding out in a few days!

Saturday, August 16, 2008

Here we go again!

Well, it's another day. I have a headache! I mostly get them over my right eyebrow. It is screaming at me, and so is my 4 yr. old. I wantgumIwantgumIwantgum! Ok, forevermore, get the piece of gum! He's asked for gum for days, and I always say no. Today I cave in. I don't want to hear it anymore! Of course, since he gets one, everyone else wants one too. Now they are quiet... for a little bit.

I should be doing loads of laundry, packing for surgery, cleaning house, shopping for groceries, paying bills, and here I sit, blogging! I feel most productive or active at least, late at night. I am awake in the day, but I don't feel alive. Some days I have to take a nap, others, I don't. I'm excited about my surgery coming up, I just lack the energy to get busy to make it happen! I look forward to having energy again someday! It would be nice to feel alive, rather than like I just exist! Some days the feelings you experience with Cushing's are just really hard to put into words. I don't know that they exist.

Ok, I'm off to get busy. The longer I sit here, the less I get done! Surgery will be here before I know it! Do you know anybody who was excited to find out they had a tumor inside their head, or that they had a disease? Only if you know a Cushie! We get excited about these things, because we have to work so hard to find out what is wrong with us, and we have to prove that it's there. Basically, we have to prove we are sick, and once we do, it is sweet validation! It is hard, hard work. Harder than you would think. It gets very frustrating and discouraging! There are days you wonder if you are on the right track, or if it is worth it all. Deep in your heart, you know it is, but you have those moments of despair and doubt that take over and threaten to squeeze the life right out of you! The support of our Cushing's community keeps us on track! I'm so thankful for all of my Cushing's friends! If it wasn't for them, I doubt I would be here, in this position today! I probably would have given up a long time ago, and resigned myself to living as long as I could, sick!
Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!

I use to feel like my life so was so on track. I'm a bit of a perfectionist. I always use to be a meticulous house keeper. Everything had a place, and everything needed to be in it's designated space! That kept momma (me) happy.

The sicker I got, the more my house went by the way side. Things that use to be really important to me, didn't seem to matter at all any more! I can only stand so much. I have to clean it somewhat eventually, but I'm not cleaning it every week like I always use too. I have very little energy left these days, so I save it for the important things in life. When I can't do the things I want to do, or feel that I need to be doing, I feel like my life is off track. That gets very discouraging some days. I just keep chugging along, hoping to get back on track one day real soon.

Who knows exactly when my journey with Cushing's actually began? It was a long time ago! I'm sure back into my teen years, and possibly into my young childhood as well. After marriage and the birth of my first baby, the weight started packing on. That was the big physical sigh. I also had fuzzy hair on my jaws/face, I had brown spots on my face that I'd never had before. I was tired a lot. At times I felt like I couldn't get enough sleep, and others, I just couldn't sleep. I'd feel anxious and paranoid. I had no clue what was wrong with me, and the doctors didn't either. I really didn't have the energy to deal with it, so I dropped it.

I had opposite type cycles for years, had no clue what they meant. Doctors all said that everything was fine. Well, if everything is fine, then there is no sense in pushing the issue right? So, I was meek. I was resigned to, "This is the life of Grace. This is what is normal for Grace. Get use to it." The problem is, as the years went on, the problems got worse. I developed more and more symptoms. I reached a place I could not ignore what my body was screaming at me. I HAD to find out what was wrong, and this time, I was not stopping until I knew the answers. This is where my real journey with Cushing's began.

Where do I start? I had done some research for the kids... looking at pictures of child hood diseases to see if they had chicken pox. There was a picture of Cushing's on that page. I'd never heard of it, so I clicked on it, and seen this lady with a bright red, round face. Hmm.... Well, my face was not that round, but it did get red. I was intrigued! I had to know more. So, I looked up more on Cushing's disease. There I found that a lot of the symptoms seemed to fit, but only to a point. On some things I was opposite as well. That really confused me. I didn't know how it could be both when they were opposite. I read a chat interview they had done with Dr. F.. In that chat, he was talking about cyclical Cushing's, and how you would have opposite symptoms. Ding, ding, ding! Winner, winner, chicken dinner! I knew I had just won the prize! Not it was making total sense to me. I was so excited, I about couldn't tear myself away from the computer! There was so much to learn! I was sucking it up like a sponge! I felt hyper and giddy to finally feel like I'd found out what was wrong for me! It had a name, it was curable, and I was just thrilled out of my gourd!

I met lots of wonderful people on the Cushing's help and support website. What a group of people! Long story short, I cut the petty stuff and flew out west and seen Dr. F. so we could get the show on the road! I came back in July of 2007, and I was diagnosed with Cyclical Cushing's disease in May/June of 2008. I had one surgery scheduled that I had to cancel for financial reasons. I rescheduled with Dr. J. in Pittsburgh, PA. Surgery is coming up next week. I didn't blog during my testing phase. I decided I would blog (0r try to) during the recovery from surgery. They will be taking my pituitary tumor out of my head through my nostril. I'm sure that will be the biggest booger that has ever come out of my nose in my life!

I hope you enjoy reading about my journey with Cushing's disease and recovery. I have 5 children who keep me entertained and do something or say something funny, almost daily! They are such a blessing!

I'm at the end of my testing process right now, at least for this round. If I don't get a cure, I'll be testing again. No matter what, I will keep on this until I beat Cushing's disease. I would like to encourage any of you who are starting on this journey to better health, if you feel that you have Cushing's, more than likely, you do. It may take a long time of testing, it takes a lot, did you hear me? A LOT of patience and perseverance on your part to get to the finish line. If a doctor ignores you, then you know it's time to fire him and find a new one. Educate yourself so that you are educated in this, you are able to go into the doctors office and have an intelligent conversation about all of these test scores and what they mean. If your doctor is offended by that, then you need to move on. Here is how to tell if you have a great doctor.

#1. Your health is his number 1 goal.
#2. Your PCP listens to you.
#3. Your PCP takes time with you. He doesn't rush in and out and throw prescriptions in your lap!
#4. Your PCP acts like you have a brain, and you just might know how to use it!
#5. Your PCP is not threatened that you read things on the internet, or in magazines! In fact, he welcomes it.
#6. Your PCP is asked a question and he says, "I don't know... but I will find out". This means several things. He is not a know it all, he is not afraid of his inabilities, he is interested to find out, he is honest!
#7. Your PCP made a mistake, and guess what? He admits it! Now there is a rare find! There's nothing wrong with making a mistake, and it takes a real man to own up to it and make it right! Consider that!
#8. The office staff is friendly. If they are in a good mood, then they get along with him too. The office probably runs fairly smoothly.
#9. When your doctor sits there pondering over your situation, wondering what to do, he may not have the answers, but he cares!
#10. When your PCP tells you he hopes you have this disease, not because he wants you to have a disease, but because it offers an explanation of what is wrong, and how to fix it. He does not care that he is not the one figuring this thing out. Ultimately, he wants you to be well again. He is willing to say, "It's beyond my expertise level, and you need more help than I can give you, and good luck and keep me informed!

Next week I will be starting my life on a new road. I'm not sure where this journey will take me. I'm hoping it's a path free of Cushing's. In all reality, I know it might not be. I might need more surgery before I am totally free of Cushing's. I am determined to get rid of it, one way or another. It just might take me a bit longer than others, or, maybe not. Time will tell.

My goal is to try to blog through my recovery process to share with others what it is like, while it is fresh in my mind.

Hugs to all,