I can't believe it's been so long since I've posted on my blog. There is a lot to update! First off, I love the new choices for backgrounds! I had to laugh when I seen the train! It fits so perfect with the title of my blog!
On to other things. Where to start? I'm now nearly 15 months post op! That seems so hard to believe! I've lost nearly 60 lbs. so far, and have at least that much more to lose. I'll post some new pics later. I don't have any recent ones to put up at the moment. My clothes are getting big again, so I think it's time to go down to a 14/16 for some things. There are still some 20's I can't wear, but some things are made different, or not sized right. I started out in a 26/28 15 months ago, so that's progress! I've lost tons of inches. I don't know how many at the moment. I have a lot of skin that will have to be cut off to get rid of it. If I could cut off the extra skin on my stomach right now, I could probably wear a 10 again!
I've been on 10 mg. of hydrocortisone for months! I don't remember exactly when I decreased to 10 mg., but it was somewhere around January, 2010. I've learned some things about my body along the way. I need 2 sodium tablets a day in the summer, and more if I'm sweating and spending a lot of time outside. I need 3/4 of a fludrocortisone in the summer. Winter time is a different story. I don't need any extra sodium, and only half of a florinef. Of course, that could all change by the time winter rolls around again! LOL! I take a boat load of stuff each day, but it's what keeps me feeling good! I'll list what I take, but keep in mind that everyone is different, and some people only take a few pills to feel good. We all have different circumstances. Here's my daily regimine:
7.5 mg. hydro at 7AM
2.5 mg. hydro at 2 PM
3/4 of a fludrocortisone tablet
Vit. B12 sublingual
Things I take occasionally:
Vit. D 50,000 IU
There is probably something I'm forgetting. LOL! Some of those things I could "live" without, but I don't feel good if I don't take them!
Overall, I've felt pretty good since having my BLA. I'd say life is much better! I did have a set back in June. I started having terrible pain on the right side of my stomach one day. I thought maybe I was too low on hydrocortisone, as I had tried to wean 1.25 mg. more, per docs instructions. I took more hydro, but it didn't change anything! I started feeling nauseated, so I took some Phenergan. If I ever get low (catch a flu bug or something), taking a Phenergan gets rid of any nausea, and taking just a tad more hydro takes away any other symptoms. So, I had taken extra of these, and it didn't change a thing! All the Phenergan did for me was make me extremely tired and sleepy, but I couldn't sleep for all of the pain. I thought maybe I was really low, and needed more hydro, so I took some more. I waited about 20 min. or so, and still, nothing changed. Only now that I had so much extra hydro in me, it made me sick, and I did throw up. That made me a little bit panicked! I took some more, because after you puke, you are suppose to take extra and see if you can hold it down. That came straight back up, as soon as it hit my stomach! I decided I was right in the first place, and whatever this was, it was not AI (adrenal insufficiency). I did not want to give myself my emergency shot, because I really didn't feel low.
This started out of nowhere, around 2 PM. The pain never let up, and felt a lot like labor pains, but at least with labor, you get a break! When my husband got home, he started looking online to see what might be causing the pain. We thought maybe gallbladder or appendix. Finally, around 6:30 or so, I had had enough! I yelled at him to just call the ambulance! LOL! I told him I was sorry later. ;)
When the squad got here, they asked questions, looked at my medic alert tag, and got me in the squad. They checked my sugar, and it was down to 58! I had no clue! I had no symptoms. I was in so much pain, that was all I could focus on. So, they put either glucose or dextrose in the IV they started. Before they did any of that, they gave me a Zofran. It's for nausea, and it works fast. I think they just didn't want me to puke in their nice red wagon! LOL! When we got over to the hospital, they checked my sugar again, and it only came up to 68, so they gave me the rest of the packet, container, whatever it was. THAT raised it up to 200 something later.
So, I told them what was going on, once I got in the hospital. They gave me some Nubain pretty quickly, thank the LORD, and got me down for a CT scan. I found out I had diverticulosis. Now, they said I didn't have diverticulitis, because my white blood cells were not high enough. Later, I found out they were raised, but just not to the point they give antibiotics. So, in my opinion, it was diverticulitis, not just diverticulosis.
So that has been an ordeal! I went to a liquid diet for a while, and I am slowly trying to add things back in. I have to find out what my trigger foods are. When I get something that doesn't work for me, I have another set back. That's the most of what I'm dealing with now. As far as recovery from the BLA, I've done great. Sometimes, after you are cured of Cushing's, these other diseases and conditions pop up, because the absence of cortisol (steroids) unmasks them. The treatment for some of these things is steroids. I've had diverticulosis for a while. It was seen on one of my previous scans, but never a problem before.
Enough about that. Let's talk about the kids and their problems. My two oldest kids started testing for Cushing's disease. They have gotten some highs, which are positive for Cushing's, but the doc they were seeing, apparently forgot how to read labs! I've been through too much, and I know how this disease and the whole diagnoses process goes. I'm not playing games! I don't have time to waste! I'm seeing my kids get sicker. SO, we hare heading to CA in Sept. to see our wizard doc! More about that in a min.
This had been so hard for me. It's bad enough to go through a disease yourself, but to see your children go through it, and know first hand what it's like, is harder than having it yourself! On top of that, both of them have major dental problems going on. It looks like my boy may have Acromegaly as well as Cushing's. You can have more than one kind of pituitary tumor at once.
For those who don't know, Acromegaly is a Growth Hormone producing tumor on the pituitary. If you are a child and still growing, this kind of tumor causes Gigantism. If you have already stopped growing, it is called Acromegaly, and it causes other bone growth. Your forehead bones grow out. This is called frontal embossing. Your jaw grows and makes your teeth spread. It causes you to develop an underbite, and other misalignment. It can cause hand, foot, nose, and ears to grow as well. He has several of these things going on, after having stopped growing for several years! To correct the jaw growth, first of all, it has to be stopped at the root of the problem. Then, they can start corrections. As it is, he will need surgery on his jaw to make it right again. They will break his jaw, cut off bone, and reset it. He will have to have braces to bring the teeth back together. My daughter has different issues. Her lower jaw is underdeveloped. The top is narrow and needs a spacer. I can't do any of this until she is diagnosed. They have to have MRI's and you can't get good pics with metal in the mouth.
So, I've been stressing about all of this! We didn't have the money to just hop on a plane to go see our distant doc! I was fretting about how we would ever come up with the money to go. We have spent so much for my medical care for the past several years, it has drained us! We had made some recent investments with money my hubby got when he lost his job. We were willing to pull them all, take our losses, sell our house... do whatever we had to do. I called our investor, and he said we had money available to take out, without penalty! God is so good! It seemed there was no way possible to make this trip. This is only the beginning. There will be much testing going on, and more travel, surgeries, follow ups, etc. At least we are back on the road to solving the problem. If I think about it for too long, it becomes overwhelming again, but I know God will make a way! He always does!