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!!! :)