When your body doesn't like what it needs...

My doctor thinks I'm having an allergic reaction to the medicine that he put me on after diagnosing me, so I have to stop taking it.  I'll be seeing him in a few weeks to see what else we can do.  In the meantime, Benadryl and I will be good friends until I no longer itch like a bunch of bugs are crawling on me.  In the wise words of my dad, "Oh... poopie."

Please pray for wisdom (for both us and the doctors), healing, medicine that I'm not allergic to, no more itching, etc.  God's still good.

DIAGNOSED!!!!!!!!!!!!!!!!

5 years, 5 bajillion doctor appointments, and 54506987243598 pokes and prods later...


...blood work has come back positive, and I have been diagnosed by my rheumatologist with Undifferentiated Connective Tissue Disease.  It's a mouthful, but I will do my best to explain it. UCTD is an autoimmune disease, in which your own immune system is attacking the connective tissue in your body.  Connective tissue is everywhere in your body, and it even includes bones and blood. Lupus and Rheumatoid Arthritis are examples of differentiated connective tissue diseases.  Undifferentiated just means that it currently does not fit the diagnostic criteria for a specific differentiated connective tissue disease; however, it is possible that it will eventually differentiate into lupus, RA, scleroderma, etc..

There is no cure for UCTD, but my doctor is going to have me try taking hydroxychloroquine (an anti-malaria medicine that for some unknown reason helps some people who have autoimmune diseases) to see if it helps me feel better.  People with UCTD typically have to have blood work pretty frequently to watch for any changes (such as neutropenia, anemia, kidney problems, more abnormal antibodies...).  Some people even end up going into remission!!  I  just found out about the diagnosis on Thursday over the phone, so I don't know what the long term plan for me is yet.  My doctor also told me that I have to be careful in the sun (due to a combination of the positive ANA test and the medicine that I'll be on), so if you see me wearing a long sleeve shirt and a hat when it's warm out, I'm just preventing my crazy immune system from doing crazy stuff.

My family and I are so excited to finally have a diagnosis, because not only do we finally understand what is going on in my body, but I also have a doctor who is responsible for me and can try to help.

The past 5 years have been incredibly difficult, but it's awesome to look back and see all of the ways that God has guided us and used a yucky situation for good.  He is faithful!

I apologize for the lack of updates lately.  Unfortunately, I really haven't been feeling well this summer and I have been needing to sleep wayyyy more than I'd like.  I am starting pre-reqs for PT school in a couple of weeks!  I'm excited to be taking some classes again... I'm a nerd.  Obviously, planning things like school and careers is a little complicated when you have a chronic illness, but I am just taking one day at a time and asking God for guidance and wisdom every day.  It's a little crazy to think about being a PT with a chronic illness, especially because of the amount of rest that I've been needing this summer (it can be discouraging), but we'll see what God's up to!  After all, He's the best physician out there.

Tomorrow

Hola! My apologies for not posting in a trillion years or something like that.  I was working on graduating... and I did it!

I plan on returning to the blogging world soon, but right now I really just have a prayer request.  My health hasn't gotten any better, and the doctors haven't gotten any closer to figuring it out.  However, they basically all told me to concentrate on getting through school and then they'd start doing more tests again.  Tomorrow, I have my first appointment of the summer, which is with my infectious diseases doctor.  He didn't want to do any tests until the mass on the back of my leg was looked at by an orthopedic who specializes in oncology.  The mass is a herniated muscle, not cancer, so now he can go ahead with whatever tests he wants to do.  So... we'll see what tomorrow brings.  Please pray that we can get this thing figured out!  Pray for my doctor, and everyone involved.  I'd like answers, but I know that no matter what happens, God's still awesome and in control.  I don't understand how people get through these things without Jesus!

THANK YOU!!!!!!!!!!!!!!!!!!!

More explosions.

So, you know how I said I was feeling better a couple of days ago?  Well, yesterday I was rushed back to the ER by ambulance because of more severe abdominal pain.  We have no idea what's going on.  Unfortunately, the care at the ER was pretty terrible, but I did get a whole lot of pain meds.  We never saw a doctor, and the PA was confident that I had an eating disorder as soon as she saw me and heard that I had lost a lot of weight.  I know eating disorders are terrible and serious, but that's not what's going on, and it made me feel even more miserable to know that medical professionals were assuming things without even trying to see if anything else was happening.  They don't like us confusing, undiagnosed people.

It was a really rough night, but I am back at school once again and feeling much better... again.   Fruity pebbles have become my post-ER food of choice.

Two of my roommates came to the hospital both times to keep me company until my parents got there.  They told me some story about a porcupine named Fluffy while I was all drugged up.  I'm ridiculously blessed with awesome, selfless friends... who manage to make me laugh even while we're in the ER.  This week has been very, very difficult, but I can't help smiling and thanking God for all of the awesome people who are helping me out.

Please keep praying that we can get this figured out... and for healing.  I have a break in a few weeks, so hopefully we'll make some progress while I'm home that week.  Until then... I'm going to try to stay out of the hospital!

Explosions.

Yesterday, I ended up in the ER with what was most likely another cyst that burst.  Unfortunately, the doctors were unable to do any conclusive tests because I've had too many scans done in the past few months and they waited too long for the ultra sound.  I am in much, much less pain now, and I've been back at school since 4am this morning; but because of my history of cysts blowing up inside of me, there is a high risk of internal bleeding and an ovarian torsion each time this happens.  I'll most likely be following up with my doctors in a couple of weeks, because that's when we have winter break.

I was very discouraged last night, but now that I'm not as sleep deprived I feel a little bit more chipper.  Please keep praying that we can get this thing (or things) figured out.  I know God is taking care of me in the meantime, though.  Every prayer, encouraging text message and email has helped more than you think! 

I'd write more, but Josh Wilson says it much better in this song...

2012 - Carried

Towards the end of the spring semester last year, I started feeling depressed.  However, I've struggled with depression before during the past 4 years with this illness, and depression unfortunately tends to be a chronic illness's side kick a lot of the time.  I figured that I was just super exhausted from getting through another year of school and that I'd feel better once I was home and could rest.  Unfortunately, that didn't happen, and this summer ended up being a really, really difficult time for me, which is why I took a break from blogging.  Basically, it became impossible to focus on anything because my brain was always busy freaking out about people getting old and dying, or feeling guilty for enjoying anything when other people in the world were suffering, or being depressed about how depressing life would be if I was always depressed and thinking about other people dying (that would probably only make sense to depressed people, because depression makes your brain think really weird/sad thoughts!).  I was even depressed about life after death, because I thought I'd be depressed then, too.  One day, my friend and I were planning on going out to ice cream, and I almost didn't go because I spent the half hour prior to leaving having a mental breakdown because I felt so guilty for doing something fun.  It was nuts.  And sad.

Depression is a whole bunch of lies, but it's cleverly mixed in with truth that make the lies seem believable.  I was right that I didn't deserve to have fun... I also don't deserve to spend eternity with Jesus.  But God is awesome like that.  He loves us with a love that I can't even grasp.  

This fall, I met once a week with a counselor at school who was very, very helpful.  First, we worked on being thankful.  Whenever I started feeling guilty (which was basically all of the time at that point), I started thanking God for his blessings.  God did some awesome things through that, and after a long, long time, I'm pretty sure I spent a week acting like a crazy person who was convinced that flowers and grass and bunnies and friends were worth jumping up and down in joy about.  Unfortunately, depression doesn't just disappear, so I still struggled a lot, but I was learning to replace lies with truth.  I was also learning more and more about God's unchanging love and faithfulness.

All of those struggles left me with a pretty epic prayer journal.  It's kind of repetitive, because there were always prayers for healing, both physically and mentally, but it is really, really cool to see what I was learning about God and His love throughout all of it.  Physically, He hasn't healed me.  I still have fevers, fatigue, and headaches everyday, and I still spend ridiculous amounts of time at the doctors trying to figure things out.  Mentally, I'm doing better, but I still have some very hard days. But, I've never been more certain that we have a God who will carry us through everything we'll ever face.

God's love for us doesn't change.  We can't make Him love us more or less than He does now.  As the year came to an end, it was obvious to me that God never left me.  2012 was hard, but it wasn't impossible... at least not with God.  Instead, it was a very real experience of His love and patience... even when we don't deserve it.

The last 6 months...

Here's a quick (kind of) list of what's been going on since I last posted in June or July or whenever:

• The medicine that the urologist gave me back in the summer helps a lot with the bladder pain and discomfort!  That means that the bladder issue is most likely Interstitial Cystitis, and it has nothing to do with anything else that's going on.  That's okay though, because we found something that can make it feel better, and I only have to take the meds when it's acting up, AND they don't have any side effects... besides making my pee blue, which is pretty cool.
• In August, I saw a neurologist for the first time.  They decided to try using the same treatment that they use for patients with fibromyalgia.  The medicine that is used by a lot of neurologists for that is Cymbalta, which is actually an antidepressant.  It helps with the pain and other neurological symptoms that the patients have.  I've been on a very low dose of it since, and physically, it has done nothing except make me constipated for 10 days straight.  However, the doctors think it might be helping me deal with the depression that being sick all of the time causes.  I'm not so sure.
• I went back to the neurologist in October, who decided it's definitely not fibromyalgia or anything like that, and the nurse practitioner decided I needed to go right to my oncologist.  We thought she meant in a week or so, but the next thing we knew we were getting sent right over to Hematology Oncology Associates, where I had been the year before.
• When my oncologist saw me for the first time in a year and a half, he was very concerned that I was still sick.  He had figured I had gotten better because he hadn't heard anything.  He ordered a PET scan, but insurance wouldn't cover it, so we had to do a chest x-ray first to "prove" that it wasn't enough to diagnose or rule out anything.  The doctor also had me record my temperature 3 times a day for three weeks.  I also had to take it whenever I felt like I had a fever.  It was SUPER stressful, because it made me think about my fever all of the time.  It turned out to be worth it though, because he was shocked at how often I get fevers over 100.  He liked my chart so much, that he took a copy of it just to use for insurance purposes.
• Then, my oncologist ordered a CT scan, because insurance still wouldn't cover a PET scan.  His main reasoning was to look for any giant lymph nodes, but he also just wanted to see everything in general.  That was on the Tuesday before Thanksgiving.
• On Thanksgiving (before we had the results from the CT scan), I woke up feeling really sick to my stomach.  But, well, I figured it was just my body being weird like always, so I still went to the Thanksgiving run that my team from high school does each year, just so I could say hi.  The pain was getting REALLY bad when I was there, so I booked it back home, where I exploded and passed out a few times (and hit my head/face on the side of the bathtub a few too many times)... and did that throughout the day.  At one point my mom said "Is it a cyst again?" and I said "No, my OB/GYN says I can't get those anymore!" Well...
• We got the CT results a few days later, which showed an ovarian cyst.  My OB/GYN had put me on birth control a few years ago to stop those, and then whenever I told him that I thought I was still getting them, he told me that I couldn't because of the birth control.  He has been kindly informed that he was wrong.
• The CT scan also showed a thyroid nodule.  Thyroid nodules can be anything from harmless cysts to malignant tumors.  The nurses at hematology/oncology are scheduling an ultra sound so that we can find out if it's fluid or solid, and then I'll be seeing my oncologist again that same day.
• My oncologist also sent me to an orthopedic to look at the dino egg on the back of my leg, because although it was originally diagnosed as a cyst by an orthopedic, it is clearly not a cyst.
• The nurse practitioner at the orthopedic place figured that we might as well stab it with a needle to see if any fluid comes out, because then it would be a cyst.  She did, and it was solid... and it HURT.  Then, I had an MRI of my leg.
• I went back today to go over the MRI results.  It didn't show any mass, so it's most likely a herniated muscle, BUT... it did show some abnormal colors or whatever MRIs show, but then they realized that she had stabbed me with a needle right before, so they don't know if that's what the abnormal "stuff" is from. So... I have to go back for another MRI sometime soon.
• The orthopedic is making me wear a brace on my wrist, because she thinks I have triangular fibrocartilage complex issues.  That has nothing to do with anything else.

I think that's it!  I also finished another semester, and I only have one more left until graduation!  Things have been really tough, because having a fever all of the time makes everything difficult.  It's so frustrating to feel like I'm not fully present all of the time, because a lot of the time I feel like I'm in a little fever daze or something. The fatigue is crazy, but God keeps giving me the strength that I need each day, and I'm still learning how to take one day at a time and not worry about the rest.  My family and I still need your prayers.  We're hoping for a diagnosis and HEALING very soon.  I will be posting much more frequently again for now. :) Thank you SO much to everyone who's been praying and encouraging me!!!!!!!!