Methotrexate + a funky bladder + grad school

Hello!

I happen to have a wee little bit of time on my hands, so I thought I'd update all of you wonderful people.

I'm alive. That's an important thing.  My body is still handling the methotrexate well (I just tend to feel pretty wiped out on Saturdays from it), and the plan is to increase the dose again in October, which is when I will see my rheumatologist for my 3 month check-up.  So far, it seems to be helping a lot with the bone/joint/muscle pain, and that is a really good sign! I also still have my hair. :)

Unfortunately, my bladder has been going nuts, so I am currently going through some treatment for that.  I have not-so-fun appointments on Fridays at 1pm for treatment.  If you happen to think of it, prayers are much appreciated on those days.

My doctor took me off one of my medicines for my stomach issues because of some nasty side effects, but so far I am doing well without it (thank you, Jesus!).  I may have already blogged about that, but I don't remember...

I am some how managing to keep up with PT school on top of doctors and medical fun (not) still, so that is awesome!  God is good.  School is a lot of work, but it's also a lot of fun.  I keep reminding myself how much of a blessing it is.  Gratefulness is a game-changer.

Thanks for continuing to pray for me.  I'm thanking Jesus for all of you!  I hope you're as excited for fall as I am!  I love the clear, cool days and the colorful trees.  Here's a sunflower from our garden:

Waiting.

Once again, I'm sorry for the lack of posts.  I've been busy waiting... waiting for the new drugs to do their thing.  So far, not very much is happening, except sometimes I think my hair is thinning (it's possible that I'm just being super paranoid because of the possibility of losing my hair, though...).  One good thing is that I haven't had very many aches and pains lately, which could be a sign that the methotrexate is helping with that! Unfortunately, the fevers and fatigue are still kicking my bum, especially in the morning.  I have a very hard time getting going in the morning, and I typically have to lay down right after breakfast to rest for a while before I get started with the rest of my day.  Thankfully, my cat has decided to be super cuddly lately, so he's been keeping me company during those yucky hours.  God's cool like that.  He keeps reminding me that he really really (x infinity) cares about me... enough to give me fluffy animals to cuddle when I feel horrible.  That's really good news.

My primary care physician started me on a new medicine to help with the GI issues, but that will take a couple months to do it's thing, too.  2 of my walks this week ended in the "explosions" that we hoped would never happen again, but today I didn't have any pain during/after my walk!  I saw my GI doctor today, and I weighed in at a massive (just kidding) 83 pounds, which is scary low.  My weight is his biggest concern right now.  I had decided to add avocados to everything (because they're full of good fat), but it turns out they make me puke.  They weren't very good, anyway.

I am officially done with all of my pre-requisites for physical therapy school, and I'll be starting that in June! Sometimes A lot of times I don't know how I'm going to get through it, seeing as my body is still busy attacking itself, but God's really good at making the impossible possible.  For now, I have 2 weeks to rest up, see some friends, and watch a lot of Sherlock. =)

I'll be seeing my rheumatologist a few weeks after I start classes to check my blood counts, see how the medicine is affecting me, and to decide if we need to change the dosage.  It's a slow process, and sometimes I think I'm going to go crazy.

I've pondered the possibility of not blogging anymore, because I feel weird writing about myself and, short of a miracle, fighting this disease will be a life-long journey for me.  But, blogging continues to be the easiest way to keep friends and family updated, and to actually have the chance to express my thoughts about everything (rather than the typical 8 second update of "trying new meds, I'll let you know if they do anything" that I'm really good at blurting out now).  So, hopefully this serves it's purpose of doing that.... and hopefully God's awesomeness will be more evident than this disease's yuckiness.

Thank you SO much for praying for me.  I'd hug every one of you if I could!

Another Shot at Treatment

After trying to write a blog post since like... 4pm today, and failing because my brain is still toasting from the daily fevers, here's a short and sweet version of what I've been trying to say:

I saw my rheumy today, and we decided that I should start taking Methotrexate (a chemotherapy agent), because the fatigue, fevers, aches and pains and everything else have been pretty bad.  Mornings have been especially horrible.  I took my first dose tonight and I will be taking it once a week from here on out.  Methotrexate is used in smaller dosages for autoimmune disease than for cancer, so I hopefully won't have any serious side effects, but please pray that my body won't absolutely hate it and that it brings some relief!  Some people don't have any bad side effects at all from the dosage that I'll be doing... hopefully I'll be one of those people =)

Unfortunately, my weight has also been terrible lately.  I've been getting sick to my stomach every morning, so that probably isn't helping... but I really just need to eat a ton, so hopefully my appetite will cooperate.  My dad just put my barf bucket back out in the garage, so that's a step in the right direction... ha.

Thank you to all of you who have been praying for me and encouraging me throughout this... you are awesome!

P.S. This encouraged me today. God's still good, and he's still in control.

"Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows." -Luke 12:6-7

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!!!!!!!!!!!!!!!!!!!