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!