Surgery...

So I just thought I'd give a quick update/info post. My nurse from my doctor's office in Colorado (the surgeon who works with my hips) just called today, and she talked with my doctor about how I'm feeling, my MRI, and things going on and he said that I'm going to need to have surgery again! :'( She said that he's going to go in and he'll drain it (because I needed to have that procedure done anyways), but than for the big surgery part, he'll have to take out part of my IT band and he's going to use it to create a new hip capsule.
I had a similar type of thing done on my right hip, where he took part of the IT band and created a new labrum. So, that's what they'll have to do for my left hip, but creating a hip capsule instead. They're hoping that by doing this it will make it thicker so that it won't tear as easily, and they're rebuilding it because they said it's torn so many times that there's not much left to try and repair. So, I'm crossing my fingers that this does the trick!!!
We don't have a set date quite yet...the surgery coordinator is supposed to call me tomorrow to set everything up. I do know that it won't be for at least a few weeks, because I have to meet with the endocrinologist on the first and talk with him about things and I also have to go to Seattle Oct. 5th-7th to meet with a medical genetics specialist for my ehlers danlos. So, it'll be sometime after that. I'll let ya know for sure though when I have the date.

I'm home!!! (Warning: Very long post!)

It has been quite awhile since I last posted (sorry it's been kinda crazy), so lets see...where to begin?

Well, since my last post, I did spend about 6 more days in the hospital after that. It was a crazy time and very emotional! The doctors ran test after test after test...once I was finally home, I looked on my online medical info to find out what all they had run and how many tests they had run. Here are the results:

• 4 MRIs


• 3 Cat-Scans


• 4 X-Rays


• 2 EKGs


• 1 Echocardiogram


• 43 Lab tests run (that includes all lab work, urine samples, spinal fluid tests, etc...)


• 1 Successful Spinal Tap & 1 attempt


• 1 Upper-GI Scope

So, with all of this taking place (not to mention LOTS of doctors coming to visit) in a 10-day period of time, I was TIRED!!! Although, I think the craziest time wasn't even when any of those things were taking place, it happened the day after my last post. The CNA had helped me get up to use the restroom and come back to bed and I told her that I didn't feel well at all and that something was wrong, she left to go get the nurse (or at least that's what she said she was going to do), and I just slid up into my bed and laid down and closed my eyes (thinking I'll just close my eyes and wait for the nurse to get here). Well, that was the last thing I remembered for the next hour or so...My mom told me that she came down from work to see me and check to see how I was doing (thank goodness she did come down), she walked into my room and I was still laying there, eyes closed, still breathing and everything, but unresponsive! She had to get ahold of nurses and things to come in, they had to call the doctor, the doctor gave me different meds in my IV, and the next thing I remember, was starting to open my eyes, there were TONS of people all around me (most of which I had no clue who they were), the doctor was next to me asking me questions, and my mom was standing next to my bed with tears streaming out of her eyes. Scary and nothing that I wanted to have happen or wake up to!!!

Well, then after that, needless to say the doctor had me transferred to a different floor where I was being monitored much more closely (my room was right next to the nurses desk), and that's where I stayed until I came home. They continued running tests and things, and the doctors finally came to the conclusion, that they knew something was wrong, but they didn't know what it was--they had run every kind of test they possibly could, but this was out of their scope. So, as I started at least feeling better and things became managable, I was released to come home on Friday Sept. 11th!

Since than I've been home resting. At first it was very frustrating realizing how much help I needed with some things--like trying to take a bath (oh that was a fun experience...thank you mom for basically pulling me out--since we realized once I was in that I couldn't stand up on my own to get out!), get dressed, do my hair, etc... As the days have gone by though things have become much easier!

I do have to rest lots still--I tried being up doing lots yesterday and ended up with a horrible headache and hurting lots! And I still have lots of follow-up appointments. Monday (the 14th) was my first follow-up and it was with my primary-care doctor. Things went well, but it was emotional (to say the least). We sat down and talked about how I was feeling, about my ehlers danlos, and about my future. I tried so hard to fight the tears back as I asked my doctor if I was going to get better, if my joints would feel better, if my back would heal and stop hurting (I've started getting scoliosis due to the ehlers danlos and they found a slight fracture in my lower back as well...probably again due to the EDS), and things like this. But, as he looked at me, and as told me how sorry he was to say this, how bad he felt, and how he wishes he could do something, but that I wasn't going to get better, my joints weren't going to heal, and basically, they were just going to continue to progressively become worse. Well, than the tears came!!! I tried so hard to say that I could handle it and that it would all be okay, but deep down, it hurt to hear this, I was scared (I still am), and I was angry that this was happening.

My sweet bishop's wife (thank you Sis. Buswell for taking me to my appointment) asked the doctor different things about this, and he explained with the example that for him and her it would take decades to get to the point where my joints are and to have to face some of the choices that I'm going to have to make based on my lifestyle, what I can and can't do, getting around, and so forth; and how instead, for me, this is happening quickly and I have to face these things now. I think after all of that, between all three of us (the doctor, myself, and my bishop's wife) are eyes were all watering. Even though I knew, deep down, that everything the doctor said is the truth, it was still hard to hear, but I am so grateful that he told me and that both him and my bishop's wife were so sweet and kind in wanting to be there for me and help me through this!

Other than that appointment though, I had an appointment yesterday with a doctor at a pain management clinic, and I also have follow-up appointments with an endocrinologist, a neurologist, and I'm going to Seattle in a couple weeks (Oct.5-7) to see a medical genetics specialist for my ehlers danlos. So, this is all keeping me quite busy. The doctors did have me completley withdraw from school for the semester due to my health (which was very hard to have to do). And, with my appointment following-up with the endocrinologist, they're thinking (from everything that has happened in the hospital and so forth) that I might have addison's disease as well, so they currently have me on different medicines to treat me for this as well.

I won't lie, it all scares me, but I know that I have some of the most amazing people ever around me--doctors, nurses, family, friends, etc...--who support me, care about me, and are continually helping me everyday! I also know that I have so many people, that I can't see, that are helping me and making it possible to get through all of this (my dad, step-dad, grandma, my Savior, and my Heavenly Father)! I don't know how I could make it through without all of these people and I want everyone to know how continually grateful I am for each of you--for your thoughts, prayers, love, support, and friendship! Also, I want to specially thank so many people who helped me and were there for me so much these last couple weeks: my mom (who was there for me 24/7), each of my sisters and their families (my wall at home is now covered with pictures and cards from my neices and nephews...and they brighten my day everytime I look at them), Jenna (for always being there for me and for sneaking me up the yummy shake while I was in the hospital), Ariana, Eric, Mitch, Clay (Mitch and Clay for coming and giving me a blessing while I was in the hospital), Sis. Fessler, Emily, Mark, my single's ward (the relief society presidency and all my friends and the whole ward for fasting for me), Dr. Anderson, Dr. Kerwin, Dr. Hollingsworth, Dr. Allen, my most favorite nurse in the hospital--Alicia (for staying with me, talking to me, crying with me, and always being there), Jeff Speckman, Tres Ferrin, and just so many people I don't think I can name them all...But I just want to say THANK YOU (I don't think that even begins to express my gratitude, but I am so truly grateful).

So, I will keep you updated, sorry this post has been SO long, but I am home now, resting, and getting stronger and better! Thanks for all your love and support!

ER trips, Spinal Taps, Medicine,and lots of Tests...

Where to start? This week has been a crazy one to say the least! Well, to start off I still have not been doing well at all with my whole body just not feeling well. On Wednesday my mom woke me up like she usually to bring me breakfast before she leaves for work. (I have such a great mom! :) ) Well, when she woke me up that morning I did NOT feel good!!! I couldn't sit up in my or even lift my head up to eat breakfast, so I had her place it beside me on a chair so that I could just reach for it.

Later that day (Wednesday) I was not getting better at all, so my mom took off work, came and picked me up from the house, and took me to the emergency roon! While I was there they did blood work, urine samples, CT scans, and the worst thing (I so didn't like) was a spinal tap! One of the things that made it the worst , besides the obvious sticking a needle clear into my spine, was that the doctor and nurse were just going to do it in the ER, and I was like okay that's fine. They started it--first they went in with straight lidocaine (OUCH), than they went to go clear into the spine to the get the CSF (cerebral spinal fluid), didn't work, they went back in with more lidocaine, and then I believe they attempted to go into the spine again, but I don't know for sure. Anyways....After that the doctor looked at me, while I just have tears streaming out of my eyes, he said that due to my ehlers danlos I had alot of calcifacations along my spine and along the ligaments and things surrounding it. So, since my tissues and everything were so hard, I had to go to radiology to have a guided (by x-ray) spinal tap. So they took me straight over, and did the spinal tap (thank goodness I was so happy that my favorite radiology tech person--that does all the injections and things--was there to do mine.)

So then it was back to the ER and waiting for the results of all the tests and everything. The doctor came in, said everything looked fine, that he wanted to try me on another new medication for nerves, he gave me a dose of the medicine, and let me go home. (By than in was like 7pm on Wednesday night.)

Oh Wednesday night came...I went to bed early (probably by like 9pm at the latest), but woke up at like 3am in horrible pain and not feeling well at all. I called my mom and she came up to help me and see what was going on. I told her and she said lets try your anti-nausea medicine first. So I took the medicine and about 10mins later I threw it up! We than decided we'd try my pain medication but that I should eat something first, so I ate about five crackers, took the pill, and 20mins later I threw up again! Finally we said okay lets try the nausea medication one more time, and it came straight back up again! So not fun!

My mom told me we need to go back to the ER. I told okay and she helped me get up and off we went (I was pretty sylish I might add in my pajamas--a T-shirt and shorts--and the socks my mom just put on my feet...no one needs shoes! haha) to the emergency room! We got there, they checked me in and got me straight back and a doctor came right in. He talked to us for awhile and he said I don't know what other tests to order, because these doctors have been run almost all the tests I could think of. He did find one type of lab that hadn't been done so he ordered that and gave me some different types of medicines in my IV.
I finally woke up at like 12:30pm that same day (Thursday) and was in a hospital room. I looked at my mom and she said that they've admitted me. That day they ran an MRI on brain, did an echocardiogram (an ultasound of my heart), more blood work, and x-rays.