**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! =)

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!!!

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!!! =)

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!

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!!!

MRI Results and Carrying On...

In my last post I talked about how the specialist had ordered the baseline MRIs for my hips and knees to get a better look at how extensive the osteonecrosis was/is; and we had those done the day following my doctor's appointment. Well, since we didn't have a follow-up appointment scheduled with my specialist--since there wasn't anything he can do at this time, so we're just supposed to wait in hopes that my adrenal glands start working, I can get off the steroids, and then we will call him and 3 months following that, he'd order new MRIs to look at things and compare. Anyways...My mom and I were both anxious to know what those baseline MRIs showed though, so I talked with my orthopedic doctor up here (the one who looked at my initial MRI of my knee and who found this specialist down at the Huntsman) and he said that we could make an appointment with him and he would look over the MRIs with us.
So as my mom and I were waiting in the room for my orthopedic doctor to come in, we're both just sitting there anxious....and all I could say and think was: 'I don't know what to think?!' My mom asked me if I was sure I wanted to know the results and I told her 'yes'. It was one of those--I just have to know! You know what I mean?! Well, the doctor came in and went through the MRI with us...
Good news first....My hips and pelvis aren't too bad! I mean they have the osteonecrosis in them, but it's more patchy/spots in different places; so not near what my knee was looking like!
Bad news next...He opened the MRI of my left knee (my right knee was the one we had the initial MRI of when we found the osteonecrosis and it was very extensive), and said: 'it looks just like the right knee!' Dang it!!!
So, that is what we've found out since my last post! The good part is, hopefully (crossing our fingers and praying), if I can get off the steroids, my hips and pelvis could heal on its own--if I can get off the steroids soon! However, when I asked if my knees/lower legs would, he said probably not...there's too much damage I think already done. Although, miracles can and do happen!!! So, we won't give-up, and we will hope that first, things will heal on their own, second, if they can't heal on their own, we will get to a place where the doctors can do something to help! It can happen! :-)
My family and friends have been AMAZING though and have helped me through all of this hard news and just through the pain and everything! Even when I know it has been hard for them as well! This week was my birthday, so in the past week my mom's taken me shopping for some new clothes (for my birthday and for winter..she's been so amazing helping me with clothes and different things since mine can't fit due to the weight gain from the steroids), she decorated my "room" (I'm down in the front room right now, but I got a new comforter, sheets, a lamp, and things for my room; so she put them all up downstairs so I can still enjoy them), we had all of my family and my friend Jenna came over on Sunday to celebrate and have cake and ice cream, Monday (my birthday) I woke up to signs and decorations and a fun present (a huge card, solar dancing flower, and a birthday pin to wear) out front, I went to lunch with my two oldest sisters (Janeice and Jodi) and we went shopping, Tuesday Jenna came over and watched a movie, and then  Tuesday night my friend Kari (she decorated my front yard and everything) came and got me and we went for ice cream! It's been great and I seriously can't thank all of them enough!!! I LOVE YOU GUYS!!!
Right now though, to be honest (which is what I want to be able to do in this blog), I am completely exhausted, I hurt, and I just want to stay in bed resting!!! Due to being on the steroids, another side effect is that they lower my immune system, so I'll get these little cuts (on my finger, a sore inside my nose, or whatnot) and they get infected and aren't healing; so I had to go to the instacare to get on some antibiotics. So for now, I decided I'm just going to take it easy and stay in bed resting!
The next step is next week...I go in on Tuesday September 25th for the retest of my lab work to recheck my adrenal glands and see if they are working! Hopefully they are, and then, hopefully the doctor will let me taper down on my steroids further so we can get off them!!! Here's to hope, faith, and prayers!!! :-)

My Appointment...

I know alot of you have been wanting to know how my appointment went, and I want to thank you for being understanding and patient with me, as it's taken me a couple days to get ready to write this post. It has also been an emotional last couple of days and I want to thank everyone, especially my family for being there...I am truly blessed!
So, to start off, as many of you probably already know, Monday morning my mom and I went down to the Huntsman Cancer Institute in Salt Lake City for an appointment with the specialist for my osteonecrosis. From the sounds of things, the looks of the MRI, and the studying of how to treat this, it sounded and looked like we were looking at some upcoming surgeries to "fix" the dead bone and take care of things--whether the surgery would be joint replacements, bone grafting, or what exactly. I was very anxious as my appointment neared, and although I'm definitely not wanting anymore surgeries, I want my leg (especially-that's where it is the worst) to get better and the pain to go away...dead bone is not a very good feeling! However, I wasn't quite ready for what came!
The doctor, who was SO KIND and WONDERFUL, told us that there's nothing they can do for me right now! Since I'm on the steroids, for my adrenal glands, they can't do anything at this time. He can't do the bone grafting because they can't use cadaver bone for it, and, since they usually take the bone from the individual's (my) pelvis, they couldn't do that either because it would be taking bad bone and replacing it with bad bone....because most of my bone isn't good right now. As for the joint replacement, 1-he doesn't want to do a joint replacement in someone as young as I am; 2-he wouldn't want to do the replacement until we're at the point of the bone actually breaking down/collapsing/fracturing; 3-with being on the steroids, it  may not heal correctly/well and he doesn't want to do anything that could cause more problems than where we are at now. So thus, nothing he can do right now.
He said that all we can do right now is basically hope and pray that my adrenal glands start working and that I can get off these steroids! So he ordered baseline MRIs of my hips and knees (which I had done yesterday), and then, when I can get off the steroids, we will wait 3 months and he will redo the MRIs and see if there are any changes. If things are starting to heal on their own from being off the steroids then we will let them continue to hopefully grow and progress on their own, if things aren't healing then he will look at things and decide from there what to do. However, as my mom asked him: 'What if she can't get off the steroids?' (which this I think is the part that was probably the hardest for my mom and I to hear)...he replied, if she can't get off the steroids, then her bones can't/won't heal. And all I could think of was, 'Seriously?! So if I don't get off the steroids then I just live with letting my bones keep dying and there's nothing I can do about it? I felt/feel like I'm between a rock and a hard place--stay on the steroids and let my bones continue to die or go off the steroids and not have my adrenal glands working fully!' (I mean obviously I know what I have to do, but it's still hard!) I couldn't keep it in any more and the tears just came--yep, right there in the doctor's office with myself, my mom, the doctor, the nurse, and the fellow (I think there was either one or two fellows).
I was just sitting there crying, my mom had tears coming out, and (this is where the kind, wonderful doctor part comes in) my doctor was just so compassionate and understanding!!! He got me a kleenex and just sat by me, rubbing my knee, and telling me how sorry he was, how horrible this is, that he wishes there was something he could do, that this sucks (yes, his words--not too many doctors will say something 'sucks' haha), that this was going to be a long road (that we were going to be seeing a lot of one another over time), and that he will be there for me through it all (that even while I'm on the steroids and he can't do anything right now, he'd still see me as I needed and even if it was just to talk about how frustrating, horrible, and unfair this was, to explain things, or whatnot)! Then, before he left, he gave me his card, put his arm around me, kissed the top of my head, and told me how sorry he was! Seriously one of the most compassionate and understanding doctors!
So, that is how my appointment went, why it has been an emotional last couple of days, and the reason as to why I didn't write the day of my appointment. My mom is so sweet and amazing...that day she just took off the rest of the day from work and spent the day with me--keeping both of our minds busy--going to my sister's house and hanging out with a couple of my sisters, running a couple errands, and watching a Hallmark movie; then yesterday, my sister Janeice took me out to her house to hang out for a couple hours, dropped me off to my mom when she get off work, we went back up to the Huntsman for the MRIs, and just talked about everything...I love her and am so grateful for her and all she does for me, and also the rest of my family and all they do for me!
Anyways...I will continue to use this blog to update as to what's going on with things--my adrenal gland testing, what we find out with the osteonecrosis (from the steroid stand-point), and so forth.

Doctor's Appointment Day

As most of you guys know, from the previous posts, today was my doctor's appointment with the specialist down at the Huntsman Cancer Institute for my osteonecrosis. Well, as much as I would really like to sit down and just write all about my appointment and everything that occured--to keep you all informed and up-to-date as well (like I promised); however, today, I just can't. I am emotionally and mentally drained from everything....we'll just say that things didn't go quite as hoped and planned/thought. So I apologize for not updating everyone today, but I will...hopefully tomorrow! Thank you all for understanding!

A Drop In Steroid Equals...

Sorry I haven't posted for a few days. I haven't been feeling the greatest. In my last post I wrote about how I had the lab tests done for my adrenal glands and how they came back showing that they still weren't working quite right--which meant that I needed to stay on the steroids...dropping down my dosage a little and then getting the tests done again in a few weeks. Well, Wednesday I dropped the dosage on my steroids which equals...I have NOT been feeling good!!!
I've been in bed most of the days resting--nauseated, my blood pressure gets low, super tired (although I'll fall asleep during the day sometimes, not always, but can't sleep very well at night), and just not feeling well. Then, Friday my wonderful sister, Janeice, took me out to the instacare because I'd been feeling heaviness in my chest and short of breath kind of for like a week (I thought maybe my steroids were messing with my allergies and asthma), so we had to go there and they said things were just inflammed in there (most likely from the steroids dropping). So we did a breathing treatment and sent me home with a nebulizer and some medicine.
Today I was able to make it to sacrament meeting! I'm so grateful for that--it always is a great start to the week! Now I shall watch a Hallmark movie with my mom (our weekend specialities...we love watching them) and try to get some sleep tonight; because tomorrow morning is my BIG morning/appointment!!! Tomorrow morning is my appointment at the Huntsman Cancer Institute to meet with the specialist doctor for my osteonecrosis!

One of Those Days...

(**For those of you that are just starting to read my blog, if you'd like, the first post explains everything going on--to kind of give you an intro I guess.**)

Everyone always tells me "you're always so positive about things still" and things like that, and I so appreciate that--you are all so kind. My response alot is "thank you, but trust me I complain and have bad days--you can ask my family"...Well, it's been one of those days, well I guess a couple days. My mom and family are all just so sweet though and will let me vent and cry when I need to! (Thank you guys!!!) So here's what's been going on...
I get really tired of using the wheelchair all the time, so I tend to cheat and get up and walk in the house a little bit. Well, after doing that on and off through the day, my legs hurt! Then, yesterday I had an appointment to go get my cortisol lab tests done. This is the lab work that the endocrinologist needs to do to check my adrenal glands to see how they're working, so that we can determine if I can get off my steroids (which I really/ideally need to get off because of the osteonecrosis; and which I want to get off  because I hate the side-effects). Well, my sweet Aunt Jeannie took me to my appointment in the morning, and then I talked to the doctor later that day to go over the results...guess what?! (I'm sure you can guess since I said it's been a couple of those day!) Yep, I'm sure you guessed right...My adrenal glands still aren't working right!!! So, I can taper down to the next lower dose on my steroids, stay on that for a couple weeks, taper to one more lower dose for a week, and redo the labs to see if they're working. I tried so hard not to cry on the phone with the doctor--I asked 'what about the osteonecrosis' and she said 'ideally we need to get you off of them, but with your adrenal glands not working we can't take you off so it may take longer to try and have your bones heal.' Then as I asked her about all of the ways I'd been feeling (constantly nauseated, headache, gaining weight--I've seriously gained 40 pounds since the beginning of this year...and you wonder why I want off these pills--and things) and her answers were just the same--it's the steroids. Now, I've seriously grown to hate these little white pills! I feel like it's this rock and a hard place--they're thinking/assuming that the steroids are what's playing a major role in the osteonecrosis but I can't go off them because of my adrenal glands not working; so it's either stay on the steroids while my bones aren't healing and are dead, or go off the steroids so my bones can start healing but my adrenal glands won't work...ugh! I mean I obviously know what I have to do.
Like I said though, my family and friends are so sweet! These last few days, oh my goodness! This last three-day weekend (with labor day) my mom hung-out with me like all weekend...we went shopping, she took me to stores I wanted to go to (and just getting out of the house lots), watched movies with me, and highlighted my hair (just helping to make me feel pretty--with new hair and clothes)! Then last night the young women in our ward came over to visit me and brought me cupcakes...so sweet! My cute neighbors came over to visit and they're just wonderful (she's always there to talk to, her little girl just makes me laugh and is so sweet, and I got to just hold their little baby and love him), and today I got to visit with my neighbors again and then some other neighbors down the street a little ways stopped by just to surprise me and say 'hi'! My sisters always call to see if I need anything, to check on me, and to just say hi! I can't tell you how much all of those things mean to me!!! It just literally melts my heart--it's those little tender mercies that help me through "those days"!!!
Sorry for a venting post...like I said, now you can see that I really do have those days and it's hard! But thank you to all of my family and friends you truly are my little tender mercies--even though those little things you do may not seem like alot...they are!!! :)

"Life's a Dance..."

Today is definitely a not feeling so well day!!! I made it to part of church, so I was definitely glad that I was able to do that and now I just plan on staying home and resting for the remainder of the day! And perhaps I will throw a nap and a movie into the mix for the day as well! :)
Like I wrote in my last post though, even though today is a so not feeling well day, I still want to try and find the good in things because there is always something good! So, here are my couple of things I have for today...
First, I love music!!! I think that lyrics can just express those feelings that you have within you just trying to get out. Here are some lyrics to the chorus of a song that I love, that definitely goes with how I've been feeling lately as well:

"Life's a dance you learn as you go

Sometimes you lead, sometimes you follow

Don't worry about what you don't know

Life's a dance you learn as you go"

As I'm continually learning each day, I can't and definitely don't have control over everything going on, and that's okay. I just need to have faith, trust, and as I go through life, I learn and grow from things!

Second, I am so unconditionally grateful for prayer and for those around me! As I stated earlier, I was able to go to part of church today, and those members in my ward did a ward fast for my mom and myself today! I was (and am) so touched by all of them for their love, care, and prayers on our behalf; and also all of my friends and family that I have heard from so many people on facebook, on here, and elsewhere telling me that I've been in their prayers...I can't thank you each enough! I KNOW that the Lord hears and answers prayers and I am so grateful for that!!! THANK YOU ALL and may you each have a WONDERFUL Sunday!!!

Learning From Others...

(***First off, just a little side note (and I'll probably mention this for the first few posts so please just bear with me, but)...for those of you who have just logged into this blog, the first post I've written--if you'd like to scroll down--explains everything going on!***)

They say "When it rains it pours!" I'm sure we've all heard that expression, right?! Although this statement can be very true (that when one thing happens, at times another thing happens, and then another and another) but, to me, it sounds like such a negative thought and expression. Just think of this, what happens when it rains....isn't it fun to just dance in the rain? What about sitting inside curled in a blanket and watch the rain through the window just come down (while we're safe and protected from it)? Or the fact that the rain helps things grow--flowers, gardens? I agree with each of these thoughts as well!

I will fully and whole heartedly admit that I am so not optimistic all the time and I definitely have my break down moments!!! It helps me when I take a step back though and try to look at things differently, so I thought it would be helpful and beneficial for me to write this blog as well as to inform and keep everyone up to date. Yesterday and this morning I had a few of those "break down moments" and frustrations but there are always things--like with the rain statement above--that make me see things differently, and I'm so grateful for that! So here's the updated scoop and how this "when it rains it pours" theory ties into all of it!

We'll start out from Tuesday evening...Right now, I'm in a wheelchair the majority of the time unless I have to get up, I use my walker, or if I'm being stubborn and just "need" (my version of need--it's called 'tired of laying down and sitting down') to be up for a minute and I just hold onto things and walk a VERY short little distance. Well, Monday evening I decided I was going to hurry and take a quick shower (I usually will take a bath right now so that I can just lay down--not standing), and when I went to wash the bottom of one of my feet, I obviously was not thinking, lifted my foot up (thus putting all my weight down on my leg that's the worst), and pain ripped through around my knee!!! I hurried and got done so I could get it out and sit down, and I realized as I was done and just sitting there that my leg would not stop hurting, so I remained between my wheelchair and bed the rest of the night. My mom and I also had a discussion that night about school. I am currently taking 2 independent study classes, and then the new semester just started and I was registered for 2 online classes. Knowing that I was probably going to have to have surgery at least on my right knee and then not knowing what was going to happen for the rest of the joints, my mom was concerned that this many classes was not in the best interest for me. For those of you who don't know, I really enjoy school, and right now it's like a little get away for me too, so withdrawing from classes it especially hard for me! Needless to say, that night was a break-down moment! I sat and talked with my mom for awhile about things...how frustrated I was that doing things as simple as trying to shower and I hurt my joints, that I need to withdraw from classes and it will put me another year until I apply for grad school, how tired I get with using the wheelchair because I can do things so much faster without it, and I was just having a complaining night! My sweet mom though just sat and let me complain, she listened, and just agreed with me when I kept saying "this sucks!!!" I love her and don't know how I'd make this without her!

Wednesday, yesterday, came and the pain was still there, a tiny bit of range of motion was gone (really not too much, but I have excessive range of motion anyways so it didn't look like much), but I was having horrible pain up in my thigh, down my lower leg, and it was very tender to touch along the bones. My sweet sister, Jill, drove me up to school to go to a psi chi (honors psychology club) meeting, and so she pushed me inside and then the elevator was right there so I was just going to push myself to the elevator, to my meeting, and then just kind of around the building and hang out until my mom came to get me. (My family is SO SWEET to drive me around since I haven't been able to drive since like Jan/Feb!)

Well, after my meeting I pushed myself outside and sat under a tree to study for a little bit. I thought about pushing myself to the Student Services Bldg, but I looked at the hill and knew it wasn't happening--my arms were hurting and exhausted already! So while I was sitting under the tree this guy came up to me and asked if I'd been pushing myself around all day, I said yes, he asked where I was going, I mentioned that I thought about going to the Student Services Bldg, and he replied 'I'll push ya!'  Are you serious?! This total stranger came up and offered to push me, how sweet is that?!!! Then, that night, a couple ladies from my church came over and brought me a fleece blanket that the women and young women in my ward had made! And today, my sweet Aunt Julie drove up from Salt Lake just to spend a few hours visiting with me and keeping me company! I just felt and feel so blessed and loved! All of these little tender mercies continually surrounding me!

So this is where we get to my saying at the beginning and how my whole 'theory' of it and how it all ties in! Rather than seeing it as: "When it rains it pours," which is definitely what I was seeing the night I just vented and complained to my mom...crying and being frustrated about I don't want to withdraw from classes, I'm tired of getting hurt and hurting more by doing something as simple as taking a shower, what if I go off the steroids and my adrenal glands have more problems, I'm tired of the steroids and all their oh so lovely side effects (the huge weight gain, blood sugar and blood pressure going up and down, the osteonecrosis now, and everything...although the steroids have allowed me to blame like everything on them! haha!), I'm tired of using a wheelchair, and all sorts of stuff! I know, I feel bad for my mom for having to listen to to me too; but she's SO WONDERFUL and just listens, agrees with me when I keep repeating the statement 'this sucks' or 'it's not fair,' and cries with me...I love my mom!!!

Instead, the rain is nice to watch, fun to dance in, and helps flowers to grow! The rain is obviously our trials, so think of all those good things that come from and during our trials! I've been blessed with COUNTLESS tender mercies!!! 1-The guy who stopped and pushed me to the Student Services Bldg, the people from my church who made the blanket and brought it to me, my Aunt Julie coming up, my family driving me all over, and my mom always being there for me...these (and many others) all teach me love, compassion, and service for others! 2-As I've gone through things my testimony of faith and prayer have been strengthened--I know that prayers are answered!!! 3-I'm realizing that my trials help to make me who I am today, that I'm stronger because of them, and that I wouldn't change that! 4-I am so truly blessed!!! I have a place to call home, indoor plumbing, heating and air conditioning, food on the table, the opportunity to further my education (even if it takes me extra time to get done), the religion I believe in, the health and strength I do have (I can still see, hear, talk, laugh, and do many things), and AMAZING family and friends!!!! As I've read your guys' comments that you had wrote on facebook and now on here, it brings to my tears to my eyes!!! I feel so loved, supported, your guys' strength, and I want you each to know how much it means to me....THANK YOU!!!

A Look Into the Past...

(**Sorry this first post is kind of long to explain things**)
To start things off I figured we better take a look at my history and how things came around, so that you can see what's taken place to lead up to this point. So starting off....
In August of 2008, I was diagnosed with a rare collagen disease, Ehlers Danlos Syndrome. This diagnosis came after years of surgeries, ER visits, blood work, tests, doctors appointments, casts, and the list goes on! My mom told me that growing up I was always very flexible, but we never really thought anything of it. However, in 7th grade, in 2001, I hurt my ankle playing soccer--not doing anything major...the grass was wet, my ankle turned on its side, and I slid across the grass tearing tendons and things. Long story short, between 2001 and 2008 I had surgeries and injuries with my ankle, knee, shoulder, hips--tearing tendons, ligaments, labrums, joint capsules, etc..., dislocating the joints, and things...while doing things as simple as hitting a volleyball, stepping wrong, pulling a suitcase, and rolling over in bed! We kept asking the doctors what could be causing this--that I wasn't doing anything major to cause these injuries--and they would tell us that there wasn't any kind of disorder that could cause it, that it was just some "freak accidents." Yeah, "freak accidents" over and over?! I don't think so! So in 2008, after going to Colorado for a hip surgery (my hips both needed to be reconstructed due to the labrum being shredded, bones not fitting right, etc...), the surgeon that I met with looked at me and said I am pretty sure you have Ehlers Danlos Syndrome! (After watching me do my pre-op range of motion testing and they all looked at me in disbelief as my hips turned until they were almost out of place!) He set me up with a geneticist here in Utah, and I was officially diagnosed Ehlers Danlos Syndrome Type 3.
Ehlers Danlos Syndrome (EDS) has many different subtypes...as I stated previously, I was diagnosed with type 3 which is the most common of the subtypes; and then the geneticist informed me that, besides having the subtypes there are also different levels an individual can have it, and I am on the more severe end of the spectrum. EDS is a disease that affects the collagen in your body, so instead of my joints or different things staying within a certain range of motion and going back, as most peoples do, mine stretch until things come out of place, tear, or whatever they so choose (they tend to have a mind of their own ;) ). Collagen is all throughout your body--in your stomach, your intestines, your blood vessels, lining, your ligaments, and everywhere; due to this, EDS has caused me to have multiple other diagnoses as well, including: gastroparesis (the delayed emptying of your stomach...so basically my food takes longer to digest so I take medicine to help my stomach digest), I'll get bacterial overgrowth in my intestines (due to the food sitting longer since the collagen of my stomach and intestines has so much flexibility that it doesn't allow the food to move through), and postural orthostatic tachycardia syndrome/postural hypotenstion (POTS) (due to the collagen in my blood vessels, when I stand, my blood pressure drops and my heart rate will increase).
Well, speeding things up to this past CRAZY year....In December 2011, I went in for back surgery. I had what are called bilateral pars defects which are two fractures in my spine (one on each side of the vertebrae), they were in my low spine, and things were very hypermobile when I'd bend with those fractures. So the surgeon went in and put 4 screws and 2 rods in to hold everything in place! I spent a few days in the hospital, and then went to a transitional rehab center for about 5 1/2 weeks (until the end of January). I came home and did pretty good for awhile, but then I was getting pain going down my legs. After some testing, we found out that I had developed another rare condition (and even yet, out of the three types, I had the most uncommon) following my spine surgery...arachnoiditis.The type I have is where the nerves, in the level of where my surgery was (and for no known reason--the surgeon did everything perfectly and clear up to this day the fusion of the vertebrae are almost 100% healed and look PERFECT!!!) rather than running smoothly up and down, have stuck to the sides on the bones--causing pain and numbness from that level (about my hips) down to my toes, instability, and other issues. I was back in the hospital the end of February while we were working on figuring things out and doing countless treatments for this. We tried anti-inflammatories, remicade infusions, physical therapy, medications for nerve issues, steroids, etc...I was in the hospital for about a week, back in the rehab center for about 3 weeks, and then home again the end of March. Between April and the beginning of June I was home and in the hospital a couple more times as they tried to keep things managed and under control as best as they could. Then, the end of May/beginning of June I ended up in the ICU with adrenal insufficiency and a problem with a few of my medicines building up to toxic levels. So, after about a week in the hospital and back on steroids, I was able to come home.
Which, gets us FINALLY to this last week...About a week and a half ago I went in for an MRI of my knee. My knee had been hurting for a little while and with where the pain was, how it was hurting and everything and, due to my Ehlers Danlos, we were thinking it looked as if I may have torn my meniscus. I was really hoping it wasn't torn, but honestly now, I would have much rather torn it, had surgery, and been getting better, then ending up with what I found out! I got my MRI report back and it showed osteonecrosis in large areas and extensive of my tibia, femur, and patella! Osteonecrosis is where the blood supply of your bone is either temporarily or permanently cut off and the bone dies! I didn't know what to think! So I called my spine surgeon (he has become like my hero for helping me out with my health stuff--ALWAYS being there for me, coming to see me in the hospital even when I was in there for being sick and not my back--coming out to the rehab center to check on me so I wouldn't have to come into the hospital, doing research galore into finding out about my arachnoiditis and everything, and just truly caring!!!) to see what I should do and who I should see, he looked at my films, and called to let me know that it was extensive, he said that the osteonecrosis can be caused from the steroids that I'm on from being sick and that we needed to get me off of them, that we needed to get some more tests done, and that he was going to do some searching to find who the best doctor would be. He ordered a CT scan of my entire leg (to better see how long the lesions were on my tibia and femur), an entire-body bone scan (to check the other bones due to the steroids--I hoped it wouldn't be anywhere else), and called and talked to a doctor down in Salt Lake at the Huntsman Cancer Institute who deals with orthopedics and bone tumors (mine aren't tumors, but he specializes with bones which is what we obviously need). So I went in for my tests, and waited, not very patiently, for the results to come back; and they came back with what I was most scared of! The CT scan looked pretty good, however, as I sat on my bed with my mom next to me, I read the bone-scan report and just cried as I read the paragraph talking about how there was osteonecrosis in my ankles, knees, hips, shoulders, and elbows!!! My right knee, which is the knee I had the initial MRI on, is the worst, followed by my other knee, and then I don't know between my other joints. The doctor in Salt Lake told my doctor up here that we will look at the films and see if it, my knee (the tibia, patella, and femur), is graftable, if we have to do a total knee replacement, or what are options are; and then we will see about my other joints what we will do. So for now, after, needless to say, a very emotional week, we're just waiting to see the specialist down at the Huntsman on Sept. 10th, I'm in a wheelchair to keep the weight off my legs (because due to the osteonecrosis there is a risk of your bones collapsing) unless I absolutely have to get up then I use my walker, and I am just super blessed to have AMAZING family and friends who have been by my side through EVERYTHING!!!