Saturday, August 22, 2009

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!!! :)

Wednesday, August 19, 2009

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!!!!

Thursday, August 13, 2009

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!