Thursday, November 17, 2011

Beautiful and blessed and more exciting news!

Well, I've had a very exciting, but very long 2 days. I called the GI doctor I wanted to see Monday to see if they had any intentions of scheduling an appointment with me because I had turned in my referral almost 2 weeks ago and still hadn't gotten a phone call about an appointment and knew I had to be seen to get scheduled for my remicade that I have to have on or around December 9th again, which is way soon....crazy. So anyways, I called and they were like oh yes, we tried to call you and your phone said some kind of verizon message (weird because I got other phone calls on the day they said they called) Anyways, they were very nice and were able to get me an appointment for the next day (yesterday) which is unheard of for getting into a specialist. I was super excited to finally get to meet this guy who is highly regarded in the GI community and was convinced in my head was going to save my colon! He belongs to 7 of the well touted GI research and professional associations, does the remicade infusions I was already receiving (which none of the GI doctors in the town I live in do), uses some newer treatments I haven't been able to try yet and some experimental ones, and most importantly and what made me ultimately decide to go to him is a Christian. His website says on it: "His practice philosophy is formed by his Christian faith to show genuine compassion to every patient and provide to them the best gastroenterological care possible." I love a doctor that comes straight out and says on their website that they are a Christian and use that as their philosophy, especially with the sometimes stigma on doctors to be purely scientific based in order to be successful. I have been very blessed to have Christian doctors that genuinely care for me and listen to me in the past and love that I will get to have a GI doctor that does the same now. Anyways, his office is 2 hours from my house, but I was convinced it was going to be worth it and there really was not a positive choice in terre haute where I live. There are only 3 GI doctors and none of them have had positive recommendations.

So, Tuesday morning I put a prayer request for a good fit and positive results on facebook and I left the house at 7:30 to get to the office at 9:30 and fill out my paperwork and meet the doctor that I'm still convinced will do this without surgery. And guess what. In good God style, my every dream came true. Not only is this doctor funny and genuine and nice. He listened to me for almost an hour, my whole crazy medical history, asked relevant questions, and then told me good news. Back story, the remicade infusions I get have only been recommended or approved for use in ulcerative colitis for a very short time (in fact I was one of the first cohorts of people to use it for UC) so there was little known about the effects of UC medication and remicade use at the same time. Since Asacol-the medicine I was on-was only used for UC it took the first cohort of people using remicade and Asacol together (me and several thousand other people) to find out that hey Asacol is a great medication for UC on it's own and remicade is a great medication for UC on it's own....but together not so much. In fact, using them together can cause more damage to your colon than not taking either of them at all. However, I was not informed of this (who knows if my dr knew this is newer information because they have only been used together for about 2 years if that and it took people like me getting as sick as I did to show the correlation) and in the process of me getting worse the dr was like hey you're getting worse so lets up your dose of Asacol. So instead of taking 4 pills a day of a medication that is contra indicated with another prescribed medication I was then taking 9 pills a day of a medication that is contra indicated with another prescribed medication. It was less than 2 months after my dose was raised that I eneded up in the hospital for 12 days and almost died...I was a little upset (minor sarcasm I was majorly upset) when I found this out...but we will deal with that later. PS--I'm pretty smart and I hate taking meds anyway so I had already quit taking the Asacol without doctor orders before I went into the hosptial for 12 days about a week prior...I could tell that my symptoms were way worse after ingesting the medication so I quit taking it on my own...this may have saved my life now that we look back at it...seriously.

Anyways, so no more Asacol, we are staying with the remicade because it gave me a quality of life back that I haven't had in years and works very well for me. However, new doctor dude said that there is another medication, azathioprine, that works very well with remicade and should put my disease in remission. There are pretty serious side effects, as with any medication, but heck he told me this pill could put my disease in remission and there would be no need for surgery not even soon but possibly ever. That is worth some side effects to me. The Azathioprine is an immunosuppressive drug so I am not supposed to be around people who are sick. I am starting it in the winter in Indiana...I fully expect to be pretty sick the next couple of months with colds and what not due to this fact. They said if I get a cold it will be pretty serious and could put me in the hospital. So please, if you are reading this and come into contact with me do not cough, sneeze, etc on me...I would really appreciate it :) Also, it can cause cancer...the same kind that the remicade can cause and especially when used together. However, I don't really care. I've said it before I'll say it again, every person on my mom's side of the family has had cancer (and survived for the most part), every person gets cancer pretty much now a days anyway, we all die, Jesus is in Heaven , there are no bills in Heaven, etc etc. So we all know we are getting cancer anyway...I just know what type I'm getting and why...hahaha...joke but serious at the same time. Plus I'm a fighter and cancer is semi-treatable...so it will be ok. All the research say the benefits far outweigh the risks and I believe so too because I get to keep my colon if it works, which was the plan now, wasn't it? So I felt the GI doctors visit went very well. They are also going to try to get my infusions scheduled for regional hospital which is in terre haute because there are rheumatologists that do them there and they can monitor my blood work through electronic records.

Anyways, I then headed back home and went to the general physician that I had found to get established and to ask about this intense muscle pain and weakness that I have been having for the past week to the point where it is debilitating (and why I'm up at 4 in the morning because I can't sleep). This was not a positive experience at all. Despite her having all of my medical records already she basically looked at my med list, looked at me, asked me some questions and called me a drug addict and said she wouldn't refill any of my pain medications or anxiety medications without drug testing me. Thank goodness none of them need refills right now because I will be finding a different doctor because if anyone knows me they know I do not take my meds like I should anyway, have painkillers left over from my surgery in January despite having 1 other surgery and 3 hospitalizations since then, and don't take my anxiety medication because it makes me feel to mellow anyways, and despite the extreme pain I've been in for the past week and a half to the point where I can't walk or move barely I have only taken a pain pill once and won't even take tylenol because I'm scared of what it will do to my liver. I was not excited at all...I want to report her to someone but don't know who or how. Then, since I am in pain, asked her what to do about it, and she said she was going to refer me to a rheumatologist but I probably wouldn't be able to get in for 3 or 4 months and until then I should just take pain medication to function. So she called me a drug addict then told me to take pain meds to function, like her suggestion for me to be able to get through the day for 3 to 4 months was to take pain medication, just to get out of bed for 3 to 4 months. Hell no. That is all I am saying about that. The end.

Tuesday night me and mom went with the cousins of my mom that helped me move up here and played basket bingo to help raise money for the Riley fire department which one of my relatives (distant) works at. I was a little skeptical at first when mom was telling me about it...but dang...let me tell you. That was seriously some of the most fun I've had in a while. I am very competitive (like none of you ever knew that) and it was such a rush waiting to hear the numbers called out and there were door prizes and a 50/50 raffle, etc. I didn't win. But it was still a blast. I can't wait til the next time (and now it is official that I am an Indiana transplant where we do things like tractor pulls and basket bingo- wait a second doesn't sound much different than Rowan county haha)

Yesterday now, or Wednesday, was pretty exciting. For me at least. I was in so much pain it wasn't even funny and I was pretty dizzy and nauseous because the GI doctor took all my blood on Tuesday but I had my appointment with the dietetics department chair at ISU and I was not going to miss that. So I got dressed and crawled my sorry bootay out of bed and downtown in the now cold (after a couple of days of 60s weather) to keep my appointment. She was awesome. She answered all of my questions. She told me that they know accept 16 people into the program instead of 12 and that in her 23 years of teaching there she had never gone to bed at night with a burning sad feeling that someone should be in that didn't get in. She said that I had great potential and could tell I was passionate about it and wanted to do it and felt certain that ISU would be a good fit for me. Of course there is an extensive application process to the program, including pre-requisites and I won't officially find out until April or May, but I feel like I could definitely be a fit into this program. I am still short 6 pre-requisites and I was going to take 2 at Ivy Tech (community college) this spring and 1 at Ivy Tech this summer and do the other ones slowly at ISU next year and then apply for the program for the following year (because you can only apply in the spring to start in the fall), but it just so happens (God and His timing again) that all of the pre-requisites are offered this spring at non conflicting time spaces at ISU and the other one is offered this summer at ISU. So, as long as I get in the university (I applied yesterday and they said I should definitely get in and registered by the beginning of December as long as they get my official transcripts) I can take all of the pre-requisites and apply to start the dietetics program this coming fall instead of the next fall. Which moves up my academic plan one full year!!!!! :) It also gives me more time to get the pre-reqs (which are required for a program at any school) out of the way, make sure I can handle physically going back to school again, and come up with a back up plan if I don't get into the dietetics program at ISU. Also, instead of going back to get a second bachelors they have a new program that is a Masters in Dietetics so I will be getting my masters instead of a BS and still be eligible to sit for the registered dietitian exam at the end of my course work and get a job as a RD/Masters certification level instead of just an RD level. If it all works out. I am so freaking excited! It is going to be a lot more work a lot faster than I expected and I hope my health can handle it...but I am very excited how windows and doors are flying open for me right now. Even though I miss my Salisbury family and friends immensely, I cannot deny the absolute hand that God has in my life right now. Despite all the pain, and bad days, my life is coming together faster and more beautifully and perfectly orchestrated than I could have planned with any amount of to do lists and planners that my ocd self uses...only God could do the things that are happening right now. And they could only be this beautifully done by him.

I am so blessed that He chose to make my life fall apart. I am so blessed that He chose me to be sick and He chose me to lose my job. Because I was complacent in my faith, I didn't know it, but I was way complacent in my faith, and now I'm not. Because now I see Him in everything...even the small things. Now I am blessed, my life is a mess, but I am blessed and I am more beautiful because of it.


2 comments:

  1. This last paragraph states God's ultimate plan and love perfectly

    ReplyDelete