If you haven't figured it out yet, I'm posting blogs that are back-dated, because I'm way behind (but still have lots I want to share with you about our time here!) Many of you have been so kind and supportive by checking in on me and my health, so I wanted to give you an update here. Day 49 was the day we got my test results back, but in this post I'll also update you in "real time" (as of April 11th).
This post is very vulnerable and honest, and the last half of it is mostly me "processing" all this... but I wanted to share it with those of you who care... and also with the hope that maybe it will encourage someone else out there who might be dealing with similar issues.
To those of you who have been praying for me, sending encouraging messages, and writing supportive comments on facebook - please know how much I appreciate you and what a blessing you have been to me during this time!
Today, we went back to the hospital in Chiang Mai for the results of all my labs and bloodwork. After 11 months of being sick with what we thought (and several American doctors thought) were parasites, we were hoping for a final diagnosis and a treatment plan. Unfortunately, the results were not very encouraging.
Except for a slight elevation in my white blood count, my tests were normal. As good as that news may sound, it meant we still had no answer - no diagnosis and no treatment plan. The doctor told us that it was definitely not parasites, which again may sound like good news.... but it was our only hope for a "quick fix" of what was causing all my issues.
The GI specialist laid out the last 4 possible diagnoses:
- Celiac's Disease
- Microscopic Colitis
- Ulcerative Colitis
And I felt completely defeated.
You see, only one of those 4 has a possibility of being cured - the rest will be life-long issues. The first two (Celiac's and IBS) may not sound so bad - I know there are many people who live with those diseases everyday. Unfortunately the only way of "managing" those diseases is changing your diet, and after keeping a food diary we have not found even ONE trigger food for me (which means diet management may not help me). So - if it's one of those issues I may have to live with this "sickness" forever - with little to no relief.
The third option is Microscopic Colitis - which has about a 65% chance of eventually going away on it's own OR being cured/managed by long-term use of medicine (I don't yet know what kind, how much, or how expensive it will be, and we do not have insurance that covers prescriptions). But there is also a 35% chance that it will not respond to medicine and I will be dealing with it for the rest of my life. In some rare cases it can also get severe, resulting in an ileostomy (a surgery that connects your intestine to an external bag that holds your waste outside your body).
And then there is the fourth option - Ulcerative Colitis. This is a horrible auto-immune disease that greatly decreases your quality of life. For those of you who know my family, this is the disease my baby brother (8 years younger than me) has. When he was 12 he spent the better part of 2 years in the hospital undergoing treatment, and there were times we thought we were going to lose him. Eventually he had to have his colon removed completely, and an ileostomy bag for several months. Later, they were able to internalize his waste with a "J-Pouch" so that he wouldn't have to have an external bag, but he still is limited by what he can and can't do, takes medicine daily, and deals with flare-ups. After watching all he has been through, the possibility of me having the same disease was absolutely terrifying.
I left the doctor's office in tears, and spent the rest of the day in bed. I cried, and slept, and generally gave in to the depression and lack of hope I felt. After a year of trying to figure things out and hoping for the best, I felt like I'd landed in a black pit.
The next few days were spent updating family and close friends, and trying to figure out what our next step would be. The only way to get a final diagnosis would be an endoscopy and colonoscopy, and I did not feel comfortable being put to sleep for those procedures in a foreign country with a doctor I did not know. Plus, there was a chance that even if I had the procedure done here, whomever I go to for treatment in the US might insist on doing a second procedure.
Fortunately, my family knows a lot about GI doctors (thanks to my brother's illness) and had a great recommendation for me. I have a consultation set up with a GI doctor in Birmingham for May 19th, and that doctor will decide when to do these procedures and how to treat me.
So... now that you know what happened on Day 49 (March 8th), you're probably wondering how I'm dealing with all this today (April 11th).
To be completely honest with you - I have my good days, and I have my bad days. I wish I could say that these stomach issues are all that I've been dealing with on this trip, but my health has been a huge factor in our day to day life since we got to Thailand. In the past 2 and 1/2 months, I've also had a horrible cold, sore throat, bronchitis, geographic tongue (a painful, chronic issue that I have because of a prescription inhaler I used for 2 years), unexplained/unidentified rashes on my arms, and a bed bug incident that left me with over 50 bites on my body. Also, because of my lack of chiropractic care here (I have a rather serious issue with my neck that I've been getting treatment for this past year) I've dealt with migraines, breathing issues, muscle spasms, and horrible pain in my neck, shoulders, back, and hips.
There are days when I want to give up. There are days when I cry and yell and throw things in frustration. There are days when I hate myself for the burden I am to my husband. There are days when I "guilt" myself into "changing my perspective" by telling myself to look at other people who have cancer or AIDS.... or those who are in worse situations than I am in... and I tell myself I should be grateful for the health and the opportunities I do have. Except that condemning myself and shaming myself for how I feel doesn't actually bring any healing. It just makes me feel like a wretched person for being so "ungrateful" --- and that kind of condemnation and shame is not from God!
There are days I am angry at God. He has miraculously healed me twice - once in 2005 from a cyst on my vocal cord and once in 2007 from severe acid reflux disease, severe allergies, and asthma (I used to have to take 5 pills a day, an inhaler twice a day, and allergy shots twice a month). I know He has the power to heal me, because I've seen Him do it before! When I got healed in 2007, God told me that He wanted to make me WHOLE. He wanted to make me COMPLETE. There are days I wonder if I heard Him wrong. There are days I wonder if I'm doing something wrong.
But then I remember that I serve a God who doesn't heal people because they are "doing everything right". My God doesn't have a big clipboard in His hand - waiting to check off all the things that I need to do before He will decide to heal me. He heals because of His mercy.... not because of my works.
And most days I don't understand Him. I don't understand why He has healed me twice, and why He won't follow through on making me complete. But then again, I also don't understand why I have friends who are suffering from cancer..... and I don't understand why there are women in Africa dying of AIDS.... or why there are babies dying all over the world from lack of clean water..... or why there are children running for their lives across the border in Burma.....
And so - on the days when I just feel like laying in bed in depression, I remember those people. I remember that life will go on - with or without me. And I can either lay in bed while it passes me by, or I can get up and LIVE IT. Because I have something to offer the world - even if I'm sick. And I still believe that I serve a MIGHTY God who told me He would make me complete. And so I'm waiting, and hoping for the day that He does!