So I apologize if this is not quite as positive and things as I've tried to keep my other posts! But right now, I need to say that all of this, all of this NOT FUN, NOT COOL stuff going on (the arachnoiditis, the ehlers danlos, the osteonecrosis, the adrenal gland problems, withdrawing from school, selling my car, and everything) is just HARD, it's overwhelming, and sometimes I just get so frustrated, angry, and overwhelmed, and yes, I cry and vent!!! I know that so many people have told me that I'm "always so positive," that "I always have a smile on my face," or so many things like that and I truly appreciate all your kindness; but let me tell you, I am so just like everyone else!!! Somedays I do okay and I can manage things pretty good, but other days it's just too hard and the smile and things aren't always there--instead there are tears, there's frustration, and there are some sweet people who sit and listen to all of it....you know who you are, thank you!!!
In my last post I had mentioned how I was in the hospital for like 4-5 days trying to get the pain under control because of things just building and hurting so much. Well, last week I ended up in the ER! When I taper down on my steroids, I usually feel okay the day I go down and then the next few days (to the next week sometimes) I don't feel well. Well, Tuesday (the 9th I guess it would've been) I dropped my steroid dose down to 7.5mg, Wednesday I didn't feel real well, Thursday morning my mom woke me up before she left for work to bring me some of my medicine and I still wasn't feeling real great so I went back to sleep, and I woke up later that morning feeling HORRIBLE! I called my mom and told her that I needed some help--that I needed someone to take me to the doctor or the hospital or something. My aunt and uncle came to pick me up and drove me straight to the ER where we met up with my mom. So the doctor did lab work and things and talked with the endocrinologist. Anyways...long story short, all my lab work looked good except my cortisol level for my adrenal glands--still not working! So the endocrinologist talked with the doctor and said that they needed to double my dose of steroids back up--so back up to 15mg for a few days then I could go down to 10mg; but instead of tapering each week, I'd have to stay on 10 for like 2 weeks, then to 7.5 for 2 weeks, and then to 5 and we'll see; and do lab work the first of November to check some different adrenal levels and stuff....Ugh!
So yes, the craziness has continued! I finally broke down the last few days and just cried because I felt so overwhelmed with everything, everything being outside of my control, hurting so much, frustrated that they can't fix the arachnoiditis due to things from the osteonecrosis and they can't take care of the osteonecrosis due to being on the steroids because of the adrenal glands and I can't get off the steroids because the adrenal glands won't "wake up" and start working properly, and just wishing that someone/the doctors could do something to make things better! So yes, I'm like everyone (well, at least I hope others are like this too and have their own break down moments where you just get overwhelmed and cry), things have just been hard, and this, well as I apologized at the beginning, is my more updating post but venting at the same time!
Thursday, October 18, 2012
Monday, October 8, 2012
Craziness
I apologize that I haven't posted in the last few weeks, as the title of this post states, things have been...crazy!!! The last few weeks I have seriously not felt well! It has just built up over the weeks, and the pain has been building up more and more over time; between the Ehlers Danlos, the arachnoiditis, and then the osteonecrosis the pain just kept building and I just couldn't handle it--it was hurting so bad!!!
The pain medicine and nothing seemed to be helping, and it had gotten to the point where I was just laying in bed most of the time, if I went outside just right around the proximity area of my house I'd use the walker, otherwise, it was the wheelchair. As the pain and not feeling well built up, I talked with my doctors and they were trying to adjust meds and various things to keep me comfortable.
However, there is one problem that comes sometimes with myself and taking oral medications, I have gastroparesis. So, we never know if the medicine is getting digested or just sitting in my stomach (thus which could be the reason I kept just hurting so bad)!!! The end of September, we ended up having me stay in the hospital for about 4-5 days to work on getting the pain under control via pain pump, IV, oral regimens, etc...until we were finally able to get it well enough tolerated to head back home!
Due to all of the craziness, I also had to talk with my professor at school (I had the same professor for both of my independent study classes) and withdraw for the remainder of the semester, because I knew I wouldn't be done in time! It was one of those, even though I was home and just laying in bed, sleeping, or after being released from the hospital, going over to my sister's house to have her help me throughout the day while my mom was at work and things; even though I was doing those things, when you don't feel well at all, you're in horrible pain, or anything like that, you're definitely not in the mind frame to focus and do school work. So, I am working on the withdrawing process.
So now, I am home resting and taking it easy. I have amazing family and friends who help me so much and are always there to talk to! And over the last like week, there's been this sweet, 'secret', person who has left little treats and surprises at my doorstep each day for me--and I hope they know that I want to thank them for that; and thank all my family and friends for their help, love, and support!!!
The pain medicine and nothing seemed to be helping, and it had gotten to the point where I was just laying in bed most of the time, if I went outside just right around the proximity area of my house I'd use the walker, otherwise, it was the wheelchair. As the pain and not feeling well built up, I talked with my doctors and they were trying to adjust meds and various things to keep me comfortable.
However, there is one problem that comes sometimes with myself and taking oral medications, I have gastroparesis. So, we never know if the medicine is getting digested or just sitting in my stomach (thus which could be the reason I kept just hurting so bad)!!! The end of September, we ended up having me stay in the hospital for about 4-5 days to work on getting the pain under control via pain pump, IV, oral regimens, etc...until we were finally able to get it well enough tolerated to head back home!
Due to all of the craziness, I also had to talk with my professor at school (I had the same professor for both of my independent study classes) and withdraw for the remainder of the semester, because I knew I wouldn't be done in time! It was one of those, even though I was home and just laying in bed, sleeping, or after being released from the hospital, going over to my sister's house to have her help me throughout the day while my mom was at work and things; even though I was doing those things, when you don't feel well at all, you're in horrible pain, or anything like that, you're definitely not in the mind frame to focus and do school work. So, I am working on the withdrawing process.
So now, I am home resting and taking it easy. I have amazing family and friends who help me so much and are always there to talk to! And over the last like week, there's been this sweet, 'secret', person who has left little treats and surprises at my doorstep each day for me--and I hope they know that I want to thank them for that; and thank all my family and friends for their help, love, and support!!!
Subscribe to:
Posts (Atom)