I am so sorry that it's already been a week and I haven't written! It's been a busy week. Here's a quick little summary of what's been going on...
Tuesday:
I went down to Salt Lake to the Huntsman Institute to see my doctor for my osteonecrosis (avascular necrosis). My doctor and all of his team down there are so nice and so sweet!! As nice as it is to see them and hear all of their kind and supportive words, it's hard at the same time. When we were leaving, I was talking to my mom kind of about that....I was telling her how great the doctor is, how much I appreciate all of them, but at the same time how it's hard; because when I see this doctor, even though we were mainly seeing him to get his thoughts on the osteonecrosis in my elbows, we end up discussing the entire picture. It's kind of a realization that I do have osteonecrosis throughout the majority of my body, that I have had to have major surgeries this past year (in 2013), that I'm still facing some big surgeries, and that some things, we just don't have the answer to.
So, my doctor looked at the MRIs of my elbows, and said that the osteonecrosis is definitely there but the good news is that my elbows aren't "shot" (collapsed) yet. He wants to send me to an orthopedic doctor who specializes specifically with elbows, so that maybe that doctor might know some more ideas on if there's anything we can do to keep the elbows from collapsing (kind of salvage them, if you will). Then, I'll follow back up with the doctor at the Huntsman in about a year, unless we have any questions sooner. (Between now and then, he knows I have my follow-ups with my other orthopedic doctors specializing on the different joints.)
I was also able to go over to my sister Jodi's for a little while on Tuesday, go to a neat class/workshop up at the hospital (it's a 'Living Well with Chronic Conditions' class that they teach for anyone who has, lives with, or knows someone with any type of chronic condition; they teach all different things to help with them--it's great), and then to my institute class that night! Needless to say I was utterly EXHAUSTED by the time I got home!!
Wednesday:
On Wednesday I was hurting and things, so I took it easy most of the day. My Ehlers Danlos had been flared up for about a week or so, so I was struggling with my joints hurting and popping and things. I'm definitely learning that an Ehlers Danlos flare-up plus Osteonecrosis (Avascular Necrosis) in most joints is not a great combination!
However, despite the pain and things going on, there was definitely good things that happened that day as well...I was able to go get ice cream with my sister Jill for her birthday, and I had my follow-up with my ankle orthopedic surgeon and (drum roll....) I got my cast off!!! I am now in a boot and able to put weight on my foot!! Yea!! (I'll put pictures up next time.)
Thursday:
Thursday was a homework day--I worked on studying most of the day, and took it easy as well.
Friday:
Friday was quite the adventure...remember how I'd mentioned earlier about my Ehlers Danlos being flared up?! Well, due to my Ehlers Danlos I also have what is called dysautonomia. Dysautonomia is kind of term that is used to describe different problems/conditions that arise from problems with your autonomic nervous system. See, Ehlers Danlos is a collagen disorder/disease, and collagen effects about 80% of your body; thus Ehlers Danlos can cause a vast array of various problems/conditions/disorders (dysautonomia being one of them). Anyways...Since Dysautonomia deals with problems from the autonomic nervous system, it can deal with one's blood pressure and heart rate/pulse.
So for a few days my pulse had been staying fairly low (it usually wouldn't go above 60), I hadn't been feeling real great, and Thursday night-Friday morning I'd slept about 15 hours. I decided I'd go to the doctor to see what they thought since it'd been a few days. Well, long story short...I ended up having to go by ambulance from the instacare to the hospital. My blood tests looked good at the doctor, my pulse was doing pretty well, but I started not feeling well, was about passing out if I stood, and my blood pressure started dropping. In the ambulance however, they checked my blood sugar (glucose) again and it was low (it was only 45). At the hospital though, they were able to run a bunch of labs which came back fine, they were able to give me some IV fluids and glucose to get my blood sugars and blood pressure stabilized, and I was able to come home that night!
Saturday:
I had a test for school that I needed to take and study for (I'd planned on studying Friday), and I also rested.
Sunday:
I made it to sacrament, had my home teacher over, got some homework done, and rested.
Anyways....This week has definitely been busy--it was full of ups and downs--but throughout it all, I have felt beyond blessed!! The Lord has blessed me with tender mercies every step of the way this week! I've been blessed with a great doctor and team down at the Huntsman, I got to spend time with my sisters Jodi and Jill this week, I was able to go to institute, I've been attending an awesome class/workshops to learn more about chronic conditions and living with them (which has helped me find all different strategies for sleeping better, different action plans, making new friends, etc...), I've managed to get all my school stuff done on time and getting decent scores, my blood work was normal (we wanted to make sure my adrenal glands and things were still doing okay with things), my ER doctor actually ran into my primary care doctor on a Friday night while I was in the ER and he came down to check on me and say hi, I was able to make it to church, and I've started overcoming some huge obstacles (a little at a time) this week!! I am so grateful for a loving, eternal Heavenly Father who loves me (and each of you) and is ALWAYS there for each of us!!! I'm grateful for an amazing family, wonderful friends, and just the most awesome people in my life! I am unconditionally grateful for the Gospel in my life and the tender mercies that the Lord constantly blesses me with!!
I hope you are each doing well! I am excited to write more hopefully tomorrow about the exciting things I'm learning and overcoming throughout all of this (that I'd mentioned above) and a continued update on everything!
Tuesday, January 28, 2014
Monday, January 20, 2014
2013=A Roller Coaster Ride
I know, I haven't kept this updated with things, and I haven't posted in here in about 10 months! I'm sorry! I hope everyone is well! I've been thinking and I decided to start up with this blog again...if not for others to follow up on what's going on in my life, but for me. I think that writing about everything I'm going through in life (school, health problems, surgeries, and all the fun stuff that comes in life), will help me mentally and emotionally as I process some things, get to talk about fun and exciting things, and just being able to write about everything. So I will apologize right now if some posts are full of frustration, some are exciting and talking about things I'm accomplishing, and different things--this is my life...I love it and I am who I am! :)
Okay, anyways....It's SERIOUSLY time to do some catching up!!! I'm not going to go into serious detail or else this will end up as like the LONGEST post ever. So instead, I'm going to sum up things, and then start to write regularly (hopefully each day, but it might just end up at least a couple times a week). Feel free to leave comments if you want, ask any questions, or just feel free to read and follow things, whatever you'd like.
As you can tell from my title of this post, 2013 has been probably one of the biggest roller coaster rides I've been on. It's been full of highs and lows, twists and turns, times when I wanted so bad for the ride to just stop and give me a break, but the roller coaster has a plan of it's own (the Lord has His plan for each of us, and they happen in the time that it's meant to). Pres. Henry B. Eyring said: "Although His time is not always out time, we can be sure that the Lord keeps His promises." I love that quote, and I came across it at a time when I really needed that reminder. Although things don't always happen when and how we want them and in the time frame we want them...if that was the case, I would be married right now, have a little kid, be graduated from college, working, in grad school, etc...., but that's not the case, instead, I'm living at home, taking classes online (although I'm getting super close to my bachelor's degree), single, unable to work, and just doing my best each day. Those are totally different aspects from one another, but it's okay. Things have, and are, happening in the Lord's time frame, things happen for a reason (although we don't always know why), and in the end, the Lord still keeps His promises to us--it just may come in a different way and at a different time frame than we expected.
So, here's a quick recap of my 2013.....(I posted the following on Facebook on New Year's Eve of 2013):
Okay, anyways....It's SERIOUSLY time to do some catching up!!! I'm not going to go into serious detail or else this will end up as like the LONGEST post ever. So instead, I'm going to sum up things, and then start to write regularly (hopefully each day, but it might just end up at least a couple times a week). Feel free to leave comments if you want, ask any questions, or just feel free to read and follow things, whatever you'd like.
As you can tell from my title of this post, 2013 has been probably one of the biggest roller coaster rides I've been on. It's been full of highs and lows, twists and turns, times when I wanted so bad for the ride to just stop and give me a break, but the roller coaster has a plan of it's own (the Lord has His plan for each of us, and they happen in the time that it's meant to). Pres. Henry B. Eyring said: "Although His time is not always out time, we can be sure that the Lord keeps His promises." I love that quote, and I came across it at a time when I really needed that reminder. Although things don't always happen when and how we want them and in the time frame we want them...if that was the case, I would be married right now, have a little kid, be graduated from college, working, in grad school, etc...., but that's not the case, instead, I'm living at home, taking classes online (although I'm getting super close to my bachelor's degree), single, unable to work, and just doing my best each day. Those are totally different aspects from one another, but it's okay. Things have, and are, happening in the Lord's time frame, things happen for a reason (although we don't always know why), and in the end, the Lord still keeps His promises to us--it just may come in a different way and at a different time frame than we expected.
So, here's a quick recap of my 2013.....(I posted the following on Facebook on New Year's Eve of 2013):
I don't even know how to put 2013 into words--it definitely has been a growing experience in so many ways! 2013 has been full of several ups and downs! I made it through a year that I would've never thought I was strong enough to handle, but I so didn't do it on my own. I've been blessed with the most AMAZING family, friends, and medical personnel (doctors, nurses, physical therapists, etc...who have become just like family and friends to me) that I could ever ask for!!! Here's a little of what my year's included (a quick sum up...the hardest things listed first):
--6 major surgeries (2 total knee replacements with long metal stems down into the tibia and up into the femur, a total hip replacement, core decompression of my shoulder with bone grafting, core decompression of my calcaneus/heel with bone grafting, and my ankle being fused)
--a combined total of about 11 weeks in a transitional rehab center and 12 days in the hospital
--Numerous tests (approx. 10 MRIs, 1 CT, over 20 x-rays, 2 ultrasounds, transfusions, lots of blood work, etc...)
--I managed to still finish 3 more classes for school with good grades
--I spent TONS of time with family and friends
--My adrenal glands started working again and I was able to get off the steroids (and lose the majority of the weight that came with them)
--I was able to start driving some again (I hadn't been able to really drive since about Feb. 2012) and got a new car
--I went through the temple (and to top that off, I was able to go through on my dad's birthday...I could so feel his spirit with me)
--I got to spend the week of Christmas (within just a time span of a few days) with every single one of my siblings, with my mom, and my step-mom for the first time in probably at least 10 years!!! (I've seen my siblings during this time, but not all during the week of Christmas!) And also with my sweet cousin and her family who I haven't seen in about 3 years!!
This year has definitely been a roller coaster (physically, mentally, and emotionally), but I've grown more throughout this year, been blessed more, and things than ever!! I am so grateful for everything and everyone in my life!! For 2014, I'm not going to make any HUGE resolutions (I'm not going to say no surgeries, because I know that won't happen; I'm not going to say to graduate from school, because I know that won't happen quite yet; I'm not going to say that I won't ever get frustrated, because I know that won't happen), but what I will say is this....In 2014, I hope to continue to have an amazing relationship with my family and to continue to love them, do all I can for them, and work for that; I hope to continue to strengthen my testimony by trying to go to the temple when I can, read my scriptures, pray, and look for missionary experiences; I hope to be as strong and healthy as I can be by listening (as much as I can--I do tend to be stubborn) to my body and taking care of it; I hope to strive to be a good friend to others; and I hope to be happy, continue to learn and grow, and be the best person that I can be!!
--6 major surgeries (2 total knee replacements with long metal stems down into the tibia and up into the femur, a total hip replacement, core decompression of my shoulder with bone grafting, core decompression of my calcaneus/heel with bone grafting, and my ankle being fused)
--a combined total of about 11 weeks in a transitional rehab center and 12 days in the hospital
--Numerous tests (approx. 10 MRIs, 1 CT, over 20 x-rays, 2 ultrasounds, transfusions, lots of blood work, etc...)
--I managed to still finish 3 more classes for school with good grades
--I spent TONS of time with family and friends
--My adrenal glands started working again and I was able to get off the steroids (and lose the majority of the weight that came with them)
--I was able to start driving some again (I hadn't been able to really drive since about Feb. 2012) and got a new car
--I went through the temple (and to top that off, I was able to go through on my dad's birthday...I could so feel his spirit with me)
--I got to spend the week of Christmas (within just a time span of a few days) with every single one of my siblings, with my mom, and my step-mom for the first time in probably at least 10 years!!! (I've seen my siblings during this time, but not all during the week of Christmas!) And also with my sweet cousin and her family who I haven't seen in about 3 years!!
This year has definitely been a roller coaster (physically, mentally, and emotionally), but I've grown more throughout this year, been blessed more, and things than ever!! I am so grateful for everything and everyone in my life!! For 2014, I'm not going to make any HUGE resolutions (I'm not going to say no surgeries, because I know that won't happen; I'm not going to say to graduate from school, because I know that won't happen quite yet; I'm not going to say that I won't ever get frustrated, because I know that won't happen), but what I will say is this....In 2014, I hope to continue to have an amazing relationship with my family and to continue to love them, do all I can for them, and work for that; I hope to continue to strengthen my testimony by trying to go to the temple when I can, read my scriptures, pray, and look for missionary experiences; I hope to be as strong and healthy as I can be by listening (as much as I can--I do tend to be stubborn) to my body and taking care of it; I hope to strive to be a good friend to others; and I hope to be happy, continue to learn and grow, and be the best person that I can be!!
There's kind of a recap of what's occured in my life over the last year and what some of my goals are for this upcoming year. Even though I went through many things that I never would've thought I was strong enough to make it through (and I couldn't have made it through without the Gospel, my family, friends, and medical personnel), I was able to have some of the best experiences (going through the temple, start driving again, seeing all my family at Christmas, getting off my steroids) I could ask for!!
One more quick thing I'll write about and then I'll be done for today. As you have already read in my recap of this last year, I have had both knees replaced, one hip replaced (the other will still need to be done), one ankle fused and core decompression (the other ankle will still need to have both those things done to it), and core decompression of one shoulder (so that we could put off having to do a replacement, and I'm putting off a replacement on the other shoulder as long as possible); we hadn't checked the severity of the osteonecrosis in my elbows (we just knew that it showed up that there was osteonecrosis in them in the bone scan in Aug. 2012). So this past Thursday they did MRIs on both of my elbows. So we will see what the doctors thoughts are on those. I also go down to Huntsman Cancer Institute tomorrow morning to see an orthopedic doctor who specializes with bone cancer actually, but he has also dealt with osteonecrosis a lot so we're going to talk with him about some things.
I hope you are all doing well! :)
Thursday, March 28, 2013
Where To Even Begin?!
I'd say it's WAY beyond time that I update this blog!!! To say that SO much has happened and I don't even know where to begin is like a complete understatement!!! So we will just try our best to do an update from my last post, up until now so sorry if it's a little long! Here it goes...
In my last post I had talked about prayers being answered and having my first surgery for my osteonecrosis scheduled to be on Dec. 12, 2012. Well, SO many twists and turns took place after that!!! I wondered things, got depressed, frustrated, upset, found joy and happiness, and so many things at so many times from then until now!!! It's been like that song that Garth Brooks sang..."Unanswered Prayers"--how it says: "Sometimes I thank God for unanswered prayers; Remember when you're talkin' to the man upstairs; That just because He doesn't answer doesn't mean He don't care; Some of God's greatest gifts are unanswered prayers."
I received a phone call the end of November pushing my surgery out one more week (some things had come up and the doctor needed to push it out a week). However, then the hard news came....I received a phone call a little later (either the end of November or beginning of December--I'm not sure which) from my insurance stating that the insurance would cover my physician, but they wouldn't cover the hospital and things (which was a major problem, because with this surgery I would need to stay in the hospital for a few days). So, since the surgical center, hospital, labs, x-rays, and everything (except the physician) would not be covered, we had to cancel my surgery and find a new doctor! I was devastated!!! I loved the doctor I had, trusted him, he was just so kind, and I felt like we were finally moving forward and getting going; and then to have this happen, it felt like a complete crush and like we were back at the beginning!!
Then, part way through December, I ran into another adrenal crisis issue and was back in and out of the hospital for a week--right around the time when I was supposed to be having the surgery...so in the end, I wouldn't have been able to go through with the surgery at that time anyways. The other hard part though, was I was also scheduled to go through the temple and take out my endowments that week, so we had to cancel that since I'd gotten out of the hospital the day before! It was a crazy time, but then, by Christmas time, things began to slow down and turn around.
The beginning of January came around and I saw a new doctor for the osteonecrosis. We planned for surgery around the 10th of January, but decided to redo MRIs on both knees to see if things had changed at all since the last MRIs done in September. I had the MRIs done and followed back up with the doctor, and he said that things basically looked the same, he didn't want to do a total knee replacement (like what was previously planned with the other surgery that was going to be done in December by the other physician) due to my age and things, so he wanted to do what was called 'core decompression'--which is where they basically drill holes in the bones to get them to bleed, take some bone marrow from my pelvis, put that into the holes where they just drilled, and then allow the bleeding and the bone marrow to stimulate a healing process.
Long story short, my mom and I talked and we just did not feel quite right about this procedure--we just had this uneasy feeling that would not go away, and, after talking with another one of my doctors (asking what he thought about the procedure and if he thought it would help and fix things) and calling my previous doctor, that was going to do the surgery in December, and asking their opinions on things...things came down to both other doctors didn't think the drilling would work. So due to our uneasy feelings and the other doctors not thinking the drilling would work, we ended up seeing another new orthopedic surgeon to get a consulatation on his opinion with things.
We saw this new doctor and he agreed that he didn't think the drilling would work, he told us that actually my MRIs from now compared to the one's in September looked worse now, and he sat and talked with us for an hour--answering questions, going over things, and all sorts of things...he reminded me exactly of the previous doctor I saw down at the Huntsman Institute!! He was SO nice!! In the end, we decided that the total joint replacement was what we needed to have done. So what they would do is the regular knee replacement, and then in addition to the replacement, he would need to also drill down the tibia and up the femur (to get the extra dead bone out) and then place metal posts down into the tibia and up into the femur! So surgery was scheduled for Monday January 21, 2013!!
The day of my surgery my oldest sister picked me up and took me to the hospital to meet my mom. I was so ready to have things finally done, the pain from the dead bone to go away, to start getting better, and to just begin on this long road to recovery! As my surgery neared, I began to get more and more nervous--wanting to have this done and better, but so scared of the unexpected. My sweet mom stood by my side the whole way though, until they took me back, and then I had the best anesthesiologist and an amazing doctor!
To hurry and summarize the remainder to the beginning of my crazy, long journey with the osteonecrosis (avascular necrosis/AVN)...Following my surgery, I stayed in the hospital for about 3 days, and then I went out to a rehabilitation center, Legacy Village Rehab, for about 4 weeks. Things were very hard at times, to say the least, as I worked on getting my strength back, range of motion back, walking again on it, and just working on getting through the physical, mental, emotional, and spiritual battle with this! There were many times that I would break down and cry, because I wanted things to 'just get better,' things 'didn't seem fair,' I would compare myself to all the other individuals there (especially those who had knee replacements), and things; however, I had the BEST support system....My family was ALWAYS there for me--one of my sisters lived about 5 mins away and would come and see me almost every day (sometimes twice a day), my mom came out all the time and was always only a phone call away (she would let me cry and vent to her and then she would help me get through it), my other siblings would call, text, and come out to visit lots, my doctor was always there if I had questions, to remind me that what I had done and what I was going through was not even close to the same as other knee replacment patients, my ward was amazing and so sweet, I had such great friends who would come visit, call, text, and were always there, and such great nurses, CNAs, physical and occupational therapists, and everyone!!! Below are some pictures from the hospital and the rehab center....
In my last post I had talked about prayers being answered and having my first surgery for my osteonecrosis scheduled to be on Dec. 12, 2012. Well, SO many twists and turns took place after that!!! I wondered things, got depressed, frustrated, upset, found joy and happiness, and so many things at so many times from then until now!!! It's been like that song that Garth Brooks sang..."Unanswered Prayers"--how it says: "Sometimes I thank God for unanswered prayers; Remember when you're talkin' to the man upstairs; That just because He doesn't answer doesn't mean He don't care; Some of God's greatest gifts are unanswered prayers."
I received a phone call the end of November pushing my surgery out one more week (some things had come up and the doctor needed to push it out a week). However, then the hard news came....I received a phone call a little later (either the end of November or beginning of December--I'm not sure which) from my insurance stating that the insurance would cover my physician, but they wouldn't cover the hospital and things (which was a major problem, because with this surgery I would need to stay in the hospital for a few days). So, since the surgical center, hospital, labs, x-rays, and everything (except the physician) would not be covered, we had to cancel my surgery and find a new doctor! I was devastated!!! I loved the doctor I had, trusted him, he was just so kind, and I felt like we were finally moving forward and getting going; and then to have this happen, it felt like a complete crush and like we were back at the beginning!!
Then, part way through December, I ran into another adrenal crisis issue and was back in and out of the hospital for a week--right around the time when I was supposed to be having the surgery...so in the end, I wouldn't have been able to go through with the surgery at that time anyways. The other hard part though, was I was also scheduled to go through the temple and take out my endowments that week, so we had to cancel that since I'd gotten out of the hospital the day before! It was a crazy time, but then, by Christmas time, things began to slow down and turn around.
The beginning of January came around and I saw a new doctor for the osteonecrosis. We planned for surgery around the 10th of January, but decided to redo MRIs on both knees to see if things had changed at all since the last MRIs done in September. I had the MRIs done and followed back up with the doctor, and he said that things basically looked the same, he didn't want to do a total knee replacement (like what was previously planned with the other surgery that was going to be done in December by the other physician) due to my age and things, so he wanted to do what was called 'core decompression'--which is where they basically drill holes in the bones to get them to bleed, take some bone marrow from my pelvis, put that into the holes where they just drilled, and then allow the bleeding and the bone marrow to stimulate a healing process.
Long story short, my mom and I talked and we just did not feel quite right about this procedure--we just had this uneasy feeling that would not go away, and, after talking with another one of my doctors (asking what he thought about the procedure and if he thought it would help and fix things) and calling my previous doctor, that was going to do the surgery in December, and asking their opinions on things...things came down to both other doctors didn't think the drilling would work. So due to our uneasy feelings and the other doctors not thinking the drilling would work, we ended up seeing another new orthopedic surgeon to get a consulatation on his opinion with things.
We saw this new doctor and he agreed that he didn't think the drilling would work, he told us that actually my MRIs from now compared to the one's in September looked worse now, and he sat and talked with us for an hour--answering questions, going over things, and all sorts of things...he reminded me exactly of the previous doctor I saw down at the Huntsman Institute!! He was SO nice!! In the end, we decided that the total joint replacement was what we needed to have done. So what they would do is the regular knee replacement, and then in addition to the replacement, he would need to also drill down the tibia and up the femur (to get the extra dead bone out) and then place metal posts down into the tibia and up into the femur! So surgery was scheduled for Monday January 21, 2013!!
The day of my surgery my oldest sister picked me up and took me to the hospital to meet my mom. I was so ready to have things finally done, the pain from the dead bone to go away, to start getting better, and to just begin on this long road to recovery! As my surgery neared, I began to get more and more nervous--wanting to have this done and better, but so scared of the unexpected. My sweet mom stood by my side the whole way though, until they took me back, and then I had the best anesthesiologist and an amazing doctor!
Waiting to go back for surgery....
My mom with me...
As many of you know, things never are quite "normal" or "typical" for me. So when my doctor finally came out to talk to my mom after my 4 to almost 5 hour surgery (when the surgery was only supposed to take 2 1/2 hours), and said I've never had this happen to me before...my mom's reply was 'welcome to operating on Jackie.' haha!! My surgery was scheduled to take about 2 1/2 hours. When the doctor got in he said that it was definitely time we had done this, because when he pushed on my bone (where the osteonecrosis, dead bone, was) it started to crumble!! They began the process of cutting out my bone, drilling down into my tibia and up into my femur to remove all the osteonecrosis (they were going to use the small metal stems to place into my tibia and femur, however, as they drilled the dead bone out the osteonecrosis went further; so they had to use the medium sized stems), and then were ready to place the metal in. This is where the craziness came into play...To place the stems and things down into the bone the doctor needed to use cement, and I guess the cement is supposed to set in about 10mins, however, when he went to do this on me, the cement set up in about 3mins; so they had to end up chiseling that stem back out! The doctor said this has never happened to him before, there obviously was something wrong with the cement mixer, so during the surgery they had to have a new one brought in from Salt Lake; thus making the surgery quite a bit longer! When I woke up from the surgery, my mom told me this story and she also said 'guess who helped with your procedure;' I had no clue and she proceeded to explain how my other orthopedic surgeon (who did my back and helped me to find a good surgeon for my osteonecrosis) had gone in to see how bad the bone looked, how all of this craziness came up, and how he ended up assisting my doctor when the new cement mixer arrived (so that they could hurry and finish the surgery and get me all closed up)!
To hurry and summarize the remainder to the beginning of my crazy, long journey with the osteonecrosis (avascular necrosis/AVN)...Following my surgery, I stayed in the hospital for about 3 days, and then I went out to a rehabilitation center, Legacy Village Rehab, for about 4 weeks. Things were very hard at times, to say the least, as I worked on getting my strength back, range of motion back, walking again on it, and just working on getting through the physical, mental, emotional, and spiritual battle with this! There were many times that I would break down and cry, because I wanted things to 'just get better,' things 'didn't seem fair,' I would compare myself to all the other individuals there (especially those who had knee replacements), and things; however, I had the BEST support system....My family was ALWAYS there for me--one of my sisters lived about 5 mins away and would come and see me almost every day (sometimes twice a day), my mom came out all the time and was always only a phone call away (she would let me cry and vent to her and then she would help me get through it), my other siblings would call, text, and come out to visit lots, my doctor was always there if I had questions, to remind me that what I had done and what I was going through was not even close to the same as other knee replacment patients, my ward was amazing and so sweet, I had such great friends who would come visit, call, text, and were always there, and such great nurses, CNAs, physical and occupational therapists, and everyone!!! Below are some pictures from the hospital and the rehab center....
After surgery....
My leg all wrapped up and then the lovely ted-hose on the other leg...
My incision....
My sweet nurse and the wonderful student nurse...
My incision after a little while (starting to look even better)...
One of my best friends, Tiffany, and her cute little guy, Tristan, came for a visit....
My sweet nieces and nephews traced, colored, and cut-themselves out so I would have a picture of each of them hanging around my room (so they'd be with me); this is my cute nieces Abbie and Ashley, and on the door is my handsome nephew Nixxon...
My niece Sammy's cut-out...
My nephew Kaleb's cut-out...
Decorations up in my room for Valentine's; cute stuff from my mom and fun cards and notes from my nieces and nephews...
My sweet mom hanging out and playing games with me...
My incision, looking better each day....
One of the therapy dogs visiting me in my room...
One of the sweetest and most fun ladies I met out at the rehab center, my friend Louise, with one of the therapy dogs....
Two therapy dogs (each day there was an activity and one day they brought these two cute dogs out to visit)....
Getting all packed up and ready to go home...
My sweet CNA, Robyn, wrote on my white-board the morning I was leaving that they'd miss me...
All packed and ready to head home...
My cute puppy Barkley (the dogs all curled up with me and not leaving my side, once I was home)...
My cute puppy Pocco...
My incision about 5 weeks post-op (when I got home)...
My x-rays of what my knee now looks like (with the replacement and the metal stems)...
The other thing that helped SO MUCH to get through everything and that continually helps me, is the Gospel!!! A little before my surgery, on Saturday January 12, 2013 (on my dad's birthday, which made this even more special to me--since he passed away when I was just 16-years old), I was able to go through the Bountiful Temple and take out my endowments!!! This was the most AMAZING experience, and just so unbelievable--I don't know how words can even begin to describe it!!! I was able to go through and feel the Spirit SO STRONG, and then to also be surrounded by my family and friends (so many people who came to show their love and support--and I as well love and show my appreciation and gratitude for them) was just unbelievable experience!!! I could feel my dad, my grandma, and so many others that I love that are in Heaven now, I could feel their Spirits there as well, and it just brought such a flood of emotions! I now without a doubt that the Gospel is true!! I love it with all of my heart, and I don't know what I would do or where I would be without it!! When I go through things, such as this journey that I am on right now, my family and the Gospel are what helps and strengthens me each day!! I am SO grateful for the opportunity I had to go through the temple, and to be able to go before my surgery and on my dad's birthday!!
After going home from the rehab center, I continued to work on getting my knee strong, I had MRIs done of my hips and shoulder (we couldn't do my right shoulder due to the metal in it), just continued to work on getting better each day, and spending time with family and friends! Then, on March 21st, I went in for a total right hip replacement! I will post about those MRIs and this new surgery soon; and then finally work-on doing a continual update on how things are (so they won't be this long)! Sorry for the length of this one! Hope you are all well!!
Saturday, November 24, 2012
**Prayers Answered and Moving Forward**
This past Monday I went back down to the Huntsman Cancer Institute for another doctor's appointment with the specialist for my osteonecrosis. It was such mixed feelings going down--I had no idea what to think. My last appointment had been so hard and emotional, so I didn't know what to really expect at this one.I had called the nurse a few weeks earlier to ask a question as far as my osteonecrosis and my steroids and things, she asked me a few questions (what dose I was down to and things), we talked a little, and then she told me that she'd talk with the doctor and call me back. The voicemail she left on my phone a little later talked about how the doctor was still really wanting me to be able to be off of the steroids and pushing for that, and then she said something to the affect of 'but...well, why don't you come back down to see him due to how things are going and we'll see what he suggests.' So I made the appointment, and part of me was still hoping, crossing my fingers, and praying that this time he'd be able to do something and we could start this process (as he, the doctor, had mentioned at my last appointment that this would be a long journey but he'd be with me each step of the way); however, the other part of me was scared, nervous, didn't want to get my hopes back up, and afraid that he'd say I had to be completely off my steroids before we could start moving forward (and honestly, I didn't know if I could mentally and emotionally handle just continuing to sit at home waiting for something to happen between the adrenal glands, osteonecrosis, arachnoiditis, and things to figure things out and move forward)!
My mom and I got down to the Huntsman bright and early Monday morning, they told me that the doctor wanted some x-rays to look at my knees and femurs again, then they had us wait in the room. The first doctor came in, I think he's like either the resident or the fellow or something (anyways, super nice), and he went over how things looked on the MRIs that they did on my previous visit in September, how the x-rays that day looked, how things were feeling, and then talking about all the different types of knee replacements and also about how it's hard because of me being on the steroids places me at a high risk for infection, the dangers of infection, my adrenal insufficiency, how we'd need to take that step forward all together if we decided to do anything, and then he asked what my gut was telling me. I explained how in my gut and in my heart I wanted so bad to just start moving forward with things because I knew (know) that it's not going to just be one surgery or a short journey, how we had to take care of the osteonecrosis before we could do the stuff for the arachnoiditis and how I wanted to get back to driving again, going to school, and things; but how I was also nervous though! He said that that showed we were all on the same page of things--wanting to do things but hesitant as well--and that he'd go talk with the doctor, they'd come in, and then we'd discuss things and see what he thought.
Well a little later the doctor came in and I guess we didn't need too much discussing because, after talking out in the hall about what we had all just discussed and looking at my images and things, he said 'okay lets start this process.' So he asked about how my adrenal glands were doing, the steroid levels, went over the imaging with us, looked at my knees, and then asked which knee I wanted done first/which was the worst. I decided on the right, and so they scheduled me for my first surgery....a right knee replacement (with possible bone grafting--they'll decide on the grafting the day of the surgery depending upon the x-rays and what they see inside) on Wednesday December 12th! They'll do a pre-op on the 11th, then on the 12th they'll do the surgery, give me antibiotics, stress dose steroids (to help keep from any adrenal crisis), then I'll stay in the hospital for 2-3 days, go to the rehab center, and then 6-12 weeks later they will look at doing a replacement on my left knee, and then we'll decide on things from there.
I am so happy, excited, and ready to start moving forward and going with this process; but I am still very nervous! I trust my doctor, his nurse, and their team completely, and the hospital down there is so nice; but it's just hard not knowing what to completely expect, and to think that I'm going to have more metal in me, another replacement (I have a partial shoulder replacement), and to be down in Salt Lake rather than up in Ogden at McKay-Dee. I know that the Lord has been hearing and answering my prayers though and others (and I sincerely appreciate those prayers on my behalf), and it's time to take that next step into hopefully having a new beginning! =)
My mom and I got down to the Huntsman bright and early Monday morning, they told me that the doctor wanted some x-rays to look at my knees and femurs again, then they had us wait in the room. The first doctor came in, I think he's like either the resident or the fellow or something (anyways, super nice), and he went over how things looked on the MRIs that they did on my previous visit in September, how the x-rays that day looked, how things were feeling, and then talking about all the different types of knee replacements and also about how it's hard because of me being on the steroids places me at a high risk for infection, the dangers of infection, my adrenal insufficiency, how we'd need to take that step forward all together if we decided to do anything, and then he asked what my gut was telling me. I explained how in my gut and in my heart I wanted so bad to just start moving forward with things because I knew (know) that it's not going to just be one surgery or a short journey, how we had to take care of the osteonecrosis before we could do the stuff for the arachnoiditis and how I wanted to get back to driving again, going to school, and things; but how I was also nervous though! He said that that showed we were all on the same page of things--wanting to do things but hesitant as well--and that he'd go talk with the doctor, they'd come in, and then we'd discuss things and see what he thought.
Well a little later the doctor came in and I guess we didn't need too much discussing because, after talking out in the hall about what we had all just discussed and looking at my images and things, he said 'okay lets start this process.' So he asked about how my adrenal glands were doing, the steroid levels, went over the imaging with us, looked at my knees, and then asked which knee I wanted done first/which was the worst. I decided on the right, and so they scheduled me for my first surgery....a right knee replacement (with possible bone grafting--they'll decide on the grafting the day of the surgery depending upon the x-rays and what they see inside) on Wednesday December 12th! They'll do a pre-op on the 11th, then on the 12th they'll do the surgery, give me antibiotics, stress dose steroids (to help keep from any adrenal crisis), then I'll stay in the hospital for 2-3 days, go to the rehab center, and then 6-12 weeks later they will look at doing a replacement on my left knee, and then we'll decide on things from there.
I am so happy, excited, and ready to start moving forward and going with this process; but I am still very nervous! I trust my doctor, his nurse, and their team completely, and the hospital down there is so nice; but it's just hard not knowing what to completely expect, and to think that I'm going to have more metal in me, another replacement (I have a partial shoulder replacement), and to be down in Salt Lake rather than up in Ogden at McKay-Dee. I know that the Lord has been hearing and answering my prayers though and others (and I sincerely appreciate those prayers on my behalf), and it's time to take that next step into hopefully having a new beginning! =)
Wednesday, November 14, 2012
A Very Eventful Weekend...
This past weekend was definitely another eventful weekend, and I am SO grateful for my family and friends for all their help, love, caring, and being there for me!!! I know I say it all the time, in like every post, but my family, friends, doctors, nurses, physical therapists, athletic trainers, and everyone truly are the BEST!!! So I guess I should probably explain to you why this weekend was so eventful, maybe a good idea, right?! Haha!!!
Well, I guess things kind of started more earlier last week (the weekend was just the eventful part). So, just kind of going off of my previous post...I had talked with my endocrinologist last week and she had added an additional steroid medication to my regimen due to my lab results and increased my other (the original) steroid back up to 10mg due to me not feeling well. Anyways, Wednesday was when I had gone up to the 10mg and by later on Wednesday evening I was starting to feel better and doing pretty well. Thursday came and I was feeling well--I mean not your super great run around and do tons of stuff type of thing, but I was feeling better than I was and thinking okay maybe I just needed to get back up this dosage and things are going to gradually start getting better and I'll feel well again. Right--not too much to hope for or think of?! (Hint, hint as to what's coming!) Thursday night was great--I was able to go up to my institute class with my friends and it was a great class! I came home and gradually started feeling worse and worse. During the night I was up and feeling extremely sick!!! I was able to go back to bed however, and I thought that hopefully I was just not feeling well from being exhausted from the day and a good night's sleep would make me feel better. I love sleep!
Every morning my sweet mom wakes me up before she goes to work to bring me my meds over to me, make sure I'm feeling okay, and get anything I need. Well lets just say when she woke me up Friday morning, the "good night's sleep" I had been hoping for to make things go away, did not happen!!! I felt absolutely awful--nauseated, dizzy, lightheaded, just wanting to sleep, and just not feeling right! I took my meds and things, and figured I better check my blood sugar and blood pressure (due to the adrenal issues). Checked blood sugar, perfect! Checked blood pressure, low! My mom helped me with things I needed and was very hesitant to go to work, but I told her it'd be okay, to just go to work, I would stay in bed and just not get out (she was only working half a day), and that I'd call the on-call endocrinologist and things to see what I should do (increase my steroids more or what) and then I'd let her know. So she left, I called and waited for the on-call doctor to call me back, and checked my blood pressure again and it was even lower! The doctor called me, and as I explained everything to her she told me that I better go to the ER to get checked out. Thank goodness my sister that lives just a few minutes away was off work, so my mom called her and she sweetly came and picked me up, took me to the ER to meet my mom, and she stayed with me.
As we waited, my blood pressure at first had gone up a bit so we were happy, but it quickly went back down, and down! They gave me IV fluids, meds for the nausea and things, and I just finally fell asleep (well what I thought was just asleep--taking a nap); but when I woke up, about 4 hours later, they were admitting me to the hospital!
I looked at my mom wondering why they were admitting me all of a sudden and what had happened during my "nap"...well, turns out it wasn't a nap, and I had gone into adrenal crisis again and went unresponsive!!! The doctors couldn't wake me up, and my mom said that every 15 mins or so my blood pressure would just drop further and further until it like 80/44 or something like that! So the doctor had to give me a high dose of "stress steroids" which was like 125mg of my steroids in order to pull me out of it! So I ended up staying in the hospital until Sunday afternoon when I got to come home! Turns out I got a UTI (urinary tract infection) and since my adrenal glands aren't producing the needed steroids/cortisol and things that people need, my body just went into crisis!
We saw my endocrinologist today and she's running more lab work to see if we can figure out whether I have primary or secondary adrenal insufficiency. They said while I was in the hospital that I definitely have the secondary adrenal insufficiency, but they're not sure about the primary. So for now, they're tapering me back down from the 25mg I'm on of the steroids back to 10mg and keeping me on that. I need to be careful that I'm not around anyone sick, because, as I just learned, if I get sick it can throw my body back into adrenal crisis!
I am so blessed and lucky to have had the doctor to reach, my sister to take me to the ER, the doctors and nurses there and in the hospital, my mom staying with me, friends who came to see me (including some of my doctors and physical therapist who are just so caring they came to see me--I count them as my friends), and everyone!!! I honestly don't know what would've happened if I wouldn't have made it/gone up to the ER that morning, and I don't even want to think about that--I am truly blessed!!! Thank you to all my family and friends--I love you all!!! And I will keep you posted on things!!!
Well, I guess things kind of started more earlier last week (the weekend was just the eventful part). So, just kind of going off of my previous post...I had talked with my endocrinologist last week and she had added an additional steroid medication to my regimen due to my lab results and increased my other (the original) steroid back up to 10mg due to me not feeling well. Anyways, Wednesday was when I had gone up to the 10mg and by later on Wednesday evening I was starting to feel better and doing pretty well. Thursday came and I was feeling well--I mean not your super great run around and do tons of stuff type of thing, but I was feeling better than I was and thinking okay maybe I just needed to get back up this dosage and things are going to gradually start getting better and I'll feel well again. Right--not too much to hope for or think of?! (Hint, hint as to what's coming!) Thursday night was great--I was able to go up to my institute class with my friends and it was a great class! I came home and gradually started feeling worse and worse. During the night I was up and feeling extremely sick!!! I was able to go back to bed however, and I thought that hopefully I was just not feeling well from being exhausted from the day and a good night's sleep would make me feel better. I love sleep!
Every morning my sweet mom wakes me up before she goes to work to bring me my meds over to me, make sure I'm feeling okay, and get anything I need. Well lets just say when she woke me up Friday morning, the "good night's sleep" I had been hoping for to make things go away, did not happen!!! I felt absolutely awful--nauseated, dizzy, lightheaded, just wanting to sleep, and just not feeling right! I took my meds and things, and figured I better check my blood sugar and blood pressure (due to the adrenal issues). Checked blood sugar, perfect! Checked blood pressure, low! My mom helped me with things I needed and was very hesitant to go to work, but I told her it'd be okay, to just go to work, I would stay in bed and just not get out (she was only working half a day), and that I'd call the on-call endocrinologist and things to see what I should do (increase my steroids more or what) and then I'd let her know. So she left, I called and waited for the on-call doctor to call me back, and checked my blood pressure again and it was even lower! The doctor called me, and as I explained everything to her she told me that I better go to the ER to get checked out. Thank goodness my sister that lives just a few minutes away was off work, so my mom called her and she sweetly came and picked me up, took me to the ER to meet my mom, and she stayed with me.
As we waited, my blood pressure at first had gone up a bit so we were happy, but it quickly went back down, and down! They gave me IV fluids, meds for the nausea and things, and I just finally fell asleep (well what I thought was just asleep--taking a nap); but when I woke up, about 4 hours later, they were admitting me to the hospital!
I looked at my mom wondering why they were admitting me all of a sudden and what had happened during my "nap"...well, turns out it wasn't a nap, and I had gone into adrenal crisis again and went unresponsive!!! The doctors couldn't wake me up, and my mom said that every 15 mins or so my blood pressure would just drop further and further until it like 80/44 or something like that! So the doctor had to give me a high dose of "stress steroids" which was like 125mg of my steroids in order to pull me out of it! So I ended up staying in the hospital until Sunday afternoon when I got to come home! Turns out I got a UTI (urinary tract infection) and since my adrenal glands aren't producing the needed steroids/cortisol and things that people need, my body just went into crisis!
We saw my endocrinologist today and she's running more lab work to see if we can figure out whether I have primary or secondary adrenal insufficiency. They said while I was in the hospital that I definitely have the secondary adrenal insufficiency, but they're not sure about the primary. So for now, they're tapering me back down from the 25mg I'm on of the steroids back to 10mg and keeping me on that. I need to be careful that I'm not around anyone sick, because, as I just learned, if I get sick it can throw my body back into adrenal crisis!
I am so blessed and lucky to have had the doctor to reach, my sister to take me to the ER, the doctors and nurses there and in the hospital, my mom staying with me, friends who came to see me (including some of my doctors and physical therapist who are just so caring they came to see me--I count them as my friends), and everyone!!! I honestly don't know what would've happened if I wouldn't have made it/gone up to the ER that morning, and I don't even want to think about that--I am truly blessed!!! Thank you to all my family and friends--I love you all!!! And I will keep you posted on things!!!
Thursday, November 8, 2012
New Update...
I'm sorry it's been so long since I've updated on things going on, but I'm going to try and get back going and updating on everything going on. So here's a quick, little update on what's been happening....
On the first of this month I went in to have my lab work for my adrenal glands rechecked. Well, the results came back and again, I broke down in tears. My baseline cortisol level (which is what your adrenal glands produce) came back at less than 1, so it basically hasn't improved at all! They also did another test as well that looks at your adrenal glands, called aldosterone, and the endocrinologist told me that she was surprised at how low that one was as well! So as I asked her if there was anything at all that we could do to figure out why these things were happening and what we could do to fix things, she said that: 1-Earlier on when we did tests for my pituitary gland it was looking good so it didn't look like I had addison's disease (which is definitely good), however, it's taking a long time for my body to be able to get off these steroids (which appears strange). 2-She added an additional steroid on to my regimen of meds, and then we'd see if that helps to make me feel a little better and give me some more energy. 3-That, it sounded like coming from what she was saying but I don't know for sure, maybe there could be something else like addison's going on but the lab work isn't showing everything (because low cortisol and low aldosterone are both signs of addison's). 4-When I asked if I may have to be on steroids for the rest of my life, she kind of paused and said 'maybe, that's what we're trying to figure out.'
Then, yesterday, I had been feeling so sick, extremely tired, and just not myself the majority of the last couple weeks (I've tapered back down to 7.5mg--which is where I had problems before and had to go back up on my steroids), so we talked to the endocrinologist again and she had me increase my original steroid again back up to 10mg to see if it would help and then stay on that dosage until next Monday and we'll call her and see what the plan is. The good news though is that increasing the steroid dose has helped me feel better!
The other update is that I am going back down to the Huntsman Cancer Institute to see the doctor for my osteonecrosis, and see if there is anything he can do yet to help with things since I am at a lower dose on my steroids; or, if I'm going to have to be completely off of the steroids before he can do anything. Although, if that's the case (that I have to be completely off the steroids), that makes me nervous because we don't know for sure yet if I will be able to get off the steroids completely. So, all that I can do is hope and pray!!! =)
On the first of this month I went in to have my lab work for my adrenal glands rechecked. Well, the results came back and again, I broke down in tears. My baseline cortisol level (which is what your adrenal glands produce) came back at less than 1, so it basically hasn't improved at all! They also did another test as well that looks at your adrenal glands, called aldosterone, and the endocrinologist told me that she was surprised at how low that one was as well! So as I asked her if there was anything at all that we could do to figure out why these things were happening and what we could do to fix things, she said that: 1-Earlier on when we did tests for my pituitary gland it was looking good so it didn't look like I had addison's disease (which is definitely good), however, it's taking a long time for my body to be able to get off these steroids (which appears strange). 2-She added an additional steroid on to my regimen of meds, and then we'd see if that helps to make me feel a little better and give me some more energy. 3-That, it sounded like coming from what she was saying but I don't know for sure, maybe there could be something else like addison's going on but the lab work isn't showing everything (because low cortisol and low aldosterone are both signs of addison's). 4-When I asked if I may have to be on steroids for the rest of my life, she kind of paused and said 'maybe, that's what we're trying to figure out.'
Then, yesterday, I had been feeling so sick, extremely tired, and just not myself the majority of the last couple weeks (I've tapered back down to 7.5mg--which is where I had problems before and had to go back up on my steroids), so we talked to the endocrinologist again and she had me increase my original steroid again back up to 10mg to see if it would help and then stay on that dosage until next Monday and we'll call her and see what the plan is. The good news though is that increasing the steroid dose has helped me feel better!
The other update is that I am going back down to the Huntsman Cancer Institute to see the doctor for my osteonecrosis, and see if there is anything he can do yet to help with things since I am at a lower dose on my steroids; or, if I'm going to have to be completely off of the steroids before he can do anything. Although, if that's the case (that I have to be completely off the steroids), that makes me nervous because we don't know for sure yet if I will be able to get off the steroids completely. So, all that I can do is hope and pray!!! =)
Thursday, October 18, 2012
This is Just Hard...
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!
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!
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