The Scoop on Treatment

I've had several people ask me how treatment is going lately, which made me realize I've been terrible at keeping people informed...

Currently, treatment is not going.

Once I was finally diagnosed with UCTD, my doctor had me start taking Plaquenil (hydroxychloroquine).  Plaquenil was originally used (and still is used) to prevent and treat Malaria, but it is now also used to treat some autoimmune diseases.  It's a pretty safe medicine and is usually tolerated well by people... unless you're allergic to it, like me.  We tried it again after a few weeks, hoping that I just happened to have a random allergic reaction to something else at the same time, but it is definitely the Plaquenil that I'm allergic too.

Before we considered any other treatment options, my rheumatologist and I decided that I should ween off of Cymbalta, seeing as it wasn't doing anything except making it impossible to poo.  I was originally put on it in August 2012 to see if it helped with the pain.  It's often prescribed for people with fibromyalgia and can greatly reduce their pain, so my neurologist thought we'd give it a try... unfortunately, my neurologist didn't inform me that Cymbalta is ridiculously difficult to get off of.  There are only 2 dosing options for Cymbalta (30mg or 60mg), which makes "weening" difficult. I was already on the smallest dose, so I just increased the time between doses each week (24 hours to 36 hours to 48 hours).  Switching to every 36 hours gave me terrible vertigo, which got worse when I switched to 48 hours.  Taking it every 48 hours just seemed to put my brain into a 48 hour cycle of feeling fine for the first 24 hours and feeling horrible for the next 24 hours, so we decided to just stop it completely after 4 days of that.  The next 2 weeks were filled with vertigo, nausea, horrible tingling/itching, "brain zaps," insomnia, and crazy mood swings.  It turns out that I was experiencing "Cymbalta Discontinuation Syndrome" which is known for being horrible (and it was super horrible), but if you are reading this and are on Cymbalta, don't freak out!  Apparently, switching to a drug with a shorter half-life, such as Prozac, can reduce (and in some cases, even eliminate!) discontinuation syndrome.  If only I knew that earlier... but at least I can poo now.

The original plan was to contact my doctor to talk about other treatment options as soon as I was off the Cymbalta and feeling more like a human being rather than a dysfunctional zombie , but then I got tonsillitis and had to wait until that was better, which took a little while.  As soon as I got off the antibiotics, the UCTD flared and I started experiencing new (and weird) symptoms (such as an inability to open my mouth when I woke up in the morning due to my lips deciding to seal themselves together overnight... I was scared the first morning that happened, but it's really just severe dry mouth which is a classic UCTD symptom).  My rheumatologist happened to be on vacation, so I just waited it out with the help of ibuprofen (for the pain... not the mouth. Ibuprofin isn't that awesome.).  Unfortunately, Tylenol (which is better for my stomach) doesn't  touch the pain when it's really bad.

Now, I am hoping to get an appointment with my rheumatologist soon to talk about new symptoms and treatment options.  Without treatment, I am still getting fevers and severe fatigue everyday, with the other symptoms (muscle pain, joint pain, bladder problems, headaches, rashes, etc) flaring up here and there randomly.  My intestines have also decided to purge their contents excessively every day again, but I am still celebrating not being constipated.  I will be seeing my GI doctor this week, so we can have a nice talk about the runs then, because getting sick to my stomach every day probably isn't helping with the fatigue.  My rheumatologist has talked about putting me on Methotrexate, but he's bummed that I'm allergic to the Plaquenil because that is much safer than Methotrexate.  Methotrexate is used as chemotherapy for cancer along with treatment for some autoimmune diseases, because it kills bad cells (in my case, the crazy immune cells).  But in order to kill bad cells, good cells also have to be killed (that's an oversimplified description of what actually happens...).  That's why we need to discuss the benefits and risks of it with the doctor rather than just starting treatment.

Hopefully, all of that makes sense to people who don't have to know all of this medical stuff.  It probably sounds really sad, but I want everyone to know that even though the past few months have continued to be very rough, God keeps providing me with everything I need to stay joyful and sane, as much I hate having an autoimmune disease and feeling like crud everyday.  Even on the most terrible days, I know that God is with me even if I don't understand why stuff like this happens to people.  I am planning on starting physical therapy school at Upstate Medical University in June, and I am pumped about getting to be on the other side of the medical field some day, where I can help other people with pain, injuries, and illnesses.  Some days I don't know how I'm going to do it, but I just keep praying that God will bring me where He wants me.  He's already brought me through so much that I couldn't have gotten through without him, so I know that I don't have to doubt His ability to... well... be awesome.  Because He is awesome.  Meanwhile, I greatly appreciate your prayers!  I know that God can heal me in an instant if that's His will, but I also need prayers for wisdom about treatment and all of that fun stuff.  Thanks for caring about me!  You guys rock.

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.