It's Been Awhile...

Sorry it's been awhile since I've posted...SO much has been going on and has happened. So, rather than have just one HUGE post, I'll make a few different posts that will explain the various things. I don't know if I'll get them all done today, but I will definitely catch you up to date over the next couple days. Hope you are each doing well!

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.

Update....

I just wanted to give everyone a quick update about this crazy week that has occured! I went back to the doctor's office yesterday (on Friday), because I still was not getting any better. It was a hard appointment--to say the least--but I just want to say that I am so grateful for all my doctors, nurses, physical therapists, athletic trainers, everyone who works at the offices, and just all of the medical personnel who help me through everything! Also, a huge thank you to Ariana for taking me to my appointment! :)
So, about my appointment...The doctor and I talked about many things--my pain levels, school, my joints in general, going to see the doctor in Seattle, and just basically my ehlers danlos in general (since that is what kind of ties all of these things together). Here were the conclusions to basically summarize the doctor's appointment:

1. No school up on-campus for Fall semester. School starts on Monday, and the doctor told me that unless I had some miraculous recovery (which he didn't find likely especially since it's a life-time/chronic thing we're dealing with) over the weekend he didn't see how it would be even be a possibility. I agreed with him and understand exactly where he's coming from. Although, I may try and see if there's a couple of online classes I could perhaps pick up--giving me something to still do, keep busy, and keep progressing towards my degree.
2. There's nothing else we can really do--because there is no cure or really any treatment (other than the anti-inflammatories, pain meds, surgery, and physical therapy) for the ehlers danlos. So, he asked if there was any chance of getting in sooner to the specialist in Washington, but I told him that I'd talked to them again but that there's no more opening (the doctor is only in the office once to twice a week) but that they'd call if something came open. So he wants me to finish the steroid pack/treatment, go back onto my old anti-inflammatories and take them (because that's already the strongest dose), continue taking my ultram (a non-narcotic pain med), and then he increased my other pain medication a little bit so I can take those as well, as needed. Then, we will wait and see what Dr. Byers, the specialist in Washington, says and if he has any ideas and/or suggestions.
3. Finally, my doctor was a bit worried about me using my crutch that I have been because of the strain it puts on my upper body. I told him that that's partly why I've just been using the one crutch--so that I wouldn't use the other with my shoulder that I just had reconstructed--that I don't use them at home, but they've wanted me to use it while I'm out, not necessarily to take the weight off but more to help stabilize me. I explained to him that it's kind of between a rock and a hard place right now--use the one crutch and put strain on my upper body to help stabilize me so that I won't trip, fall, or have any problems or don't use and risk tripping or falling and causing more damage. So, he's suggested that I don't use my crutch anymore when going out, but rather use my wheelchair (with someone else pushing me)--not because I would be wheelchair-bound but to help try and preserve my joints as long as possible. He said that my joints are just wearing out fast, it's part of the disease process, and there's nothing really that we can do. So, we'll use the wheelchair to try and help calm and slow things down.

So, that's basically my doctor's appointment in a summary. Sorry this has been such a long entry, but I thought I'd give everyone an update. Thank you so much again to all the wonderful people in my life who are continually there for me! I don't know how I'd make it through everything without my wonderful family, friends, medical personnel, and my Savior! Thank you for all the continued thoughts, prayers, phone calls, visits, and everything! I appreciate everyone! Thank you!!! :)

Angels in my Life...

Oh where to begin?! These last few days have been very eventful, to say the least! We'll just start out with saying...Today I'm laying in bed--which is what I've been doing 24/7 since Sunday--and my sister, Jessica, and her two kids, Kaleb and Sammy, came over to see me, and as I'm on the computer looking at things Jessica asks: 'are you going to update your blog and write on there that you're alive?!'
So here you go everyone...I am alive!!! :) (So here's the story on why she's wanted me to write that...)
It all began Sunday morning...My mom woke me up before she left to church, so that she could help me with my physical therapy exercises on my hip. (My mom is so wonderful and I don't know what I'd do without her...she's just an angel in my life!) When she woke me up I told her that I just hurt horribly, but that's not too uncommon for me to wake up and have pain due to my Ehlers Danlos, so she said that maybe I should just stay home from church today and rest. I told her I'd see how I was feeling and things. So, my mom and little brother left to church and I gradually tried to get ready to go to my ward (I'm in a single's ward). I was still hurting alot, but I wanted to try and make it for at least part of church. I was finally ready and headed out the door, and I got to church just a little into Sunday School where I went and met up with my friends. Sunday School got over, and my best friend, Jenna, and I were heading to go down the hall to Sacrament! She's so cute, she looks at me and was like 'Jackie I'm not trying to sound mean, but you don't look very good...you either look like you are in lots of pain or don't feel well. Are you okay?' I just looked at her and told her that it was both--I was in so much pain it was making me sick, but I'd be okay. We started down the hall, and I held on to my crutch with one arm and her with the other; we stopped for a minute and I started crying a little bit and she just asked if I wanted her to take me home. I told her I'd be okay and that I wanted to try and stay. However, than the pain in my head started getting very bad and making me extremely dizzy. All I remember was saying: 'Jenna I hurt so bad and I don't feel very good.' and then I passed out!
My wonderful friends, more sweet angels in my life, caught me and laid me down. Jenna called my mom and someone else called 911. And I ended up being taken by the ambulance up to the ER.
My sister, Janeice, met my mom and I up there, and they--my mom and Janeice--stayed with me the entire time. I love my family so much...they mean everything to me! The doctor ran blood tests, x-rays, CT-scans, IVs, pain meds, and everything while I was up there. All of my tests came back normal (well nothing came up that we didn't know about all ready...the CT-scan showed mild curvature of my lumbar spine and an increase in size and number of kidney stones throughout my kidneys) and so that was great news!!! She, the doctor, said that she's thinking I have costochondritis again--which is an inflammation of the cartilage between my ribs and my sternum--and that and all of the other pain and inflammation throughout my body is coming from my Ehlers Danlos.
The Ehlers Danlos, as I have said, is a collagen disease and collagen is found throughout your entire body. So, with this flare-up, the joints connecting my ribs and sternum, between my neck and my skull, in my back, shoulders, hips, etc... (basically all throughout my body) all pop, shift around a little bit, and just inflame everything...thus causing all of the pain, sickness, and dizziness.
So, I went to my primary care physician yesterday, Tuesday, and things still aren't getting better, so they switched the anti-inflammatory medicine I was on to a steroid (it's a 6-day taper off treatment) to see if hopefully this can hit it and help calm everything down. In the meantime, while I'm waiting for that to kick in, I'm just home laying in bed, taking naps, watching movies, and just taking it easy.
I'm so grateful that it was nothing more severe than this, and more than anything, I'm so grateful for all the many angels that the Lord has blessed me with in my life! I want all of my family and friends to know how much I love them, am grateful for them, and that I don't know what I'd do without them. It seems that whenever I'm having a hard time or anything or just need a little "pick-me-up" my family and friends have either called and/or come over to visit! THANK YOU SO MUCH to my mom, my siblings (Janeice, Jodi, Jessica, Jill, and Taylor), my neices and nephews, my Bishops (both in my family ward and in my single's ward), my friends (Jenna, Eric, Dallin, Ariana, Tiffanie, Tara, Ashley, Tiffany, Kelsey, Jill), so many ward members and leaders (again from both wards...Sister Fessler, Jennifer, Amy, Bro. Carlile, Bro. Scott, Mitch), and just everyone!!! Thank you for always being there for me and helping me through everything...I love you guys!!!!

Moving Forward...

Sorry I haven't updated this in a little while, but here's what's been going on...
I've been in my brace and using my crutch still since my last entry (trying to keep my hip stable and things). A few days ago I met with one of my doctor's, Dr. Blackham, here in Ogden--at McKay-Dee Hospital--and it was a tough visit, but there's still good that comes out of it!!!
We sat down and talked about all of my joints, how painful and unstable they are becoming, what I'm supposed to do to be able to go to school (up on campus) again, sleep well at night, and just function. That's where the hard part came in: He just looked at me (with that look of a 'I really don't want to have to tell you this') and told me that there was nothing else he could do, everything I was already trying was all that he could think of, that this is all part of the disease process, that I have--with my complications and things--the worst case he's ever seen (which I didn't particularly want to hear that), and that, sadly, it's only going to get worse! Hard to have to hear, right?! :(
Well, here comes the more positivie side to it--the silver lining that I needed to try and find: Dr. Blackham suggested that I try and get into a doctor at one of the clinics that worked/specialized more with Ehlers Danlos patients. Of course none of those clinics are around here really, so I made a phone call. I called Dr. Byer's office at the University of Washington, up in Seattle, because another doctor I had seen down at the University of Utah had told me about Dr. Byers. His office called me back today, and guess what...I have an appointment with Dr. Byers on Tuesday October 6th!!! I'm exciting! I know that they're still might not be any exact answers to come from this, because as of right now there is no cure, but it'll be nice to meet with a doctor who's doing research on Ehlers Danlos, who might have some ideas, and who might be able to help me have a little bit more of a functionable life!!!
My old seminary prinicipal my senior year of high school, Brother Bell, once told me two things that have always stuck with me and that I'll never forget...The first was: "The Lord knows what you can handle and He will help you through...Pray as if everything depends on Him and live as if everything depends on you." The second was: "The power within you is greater than the obstacles in front of you."
I'll admit that some days I have a hard time believeing that I am strong enough to deal with the things that I am faced with, but I know that when I turn to the Lord and do these things that Bro. Bell has told me--praying to Him like everything depends on it--I can feel that power within me grow and He does help me through those obstacles in front of me!