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

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!!!!!!!!

Ch-ch-ch-chaaanges

I'm back!  I know it's been like 6 months or something crazy like that since my last post.  I needed a break, because I was feeling pretty discouraged and didn't even know what to think, let alone write for everyone else to see.

You've probably noticed that the blog looks completely different and even has a new title!  The title is from John 16:33, which has encouraged me a lot throughout the past few months.  It reminds me that challenges and trials are to be expected, but that because of Jesus' life, death, and resurrection,  we can rejoice in knowing that God can make even really, really hard/sad/bad/painful things work together for good.

Anyway, I'm working on a post with a whole bunch of updates, but if you can't wait until then, here are a few important things to know:

1) I'm still alive.
2) I'm still sick.
3) Jesus is still awesome.

Adios!

A day at the urologists...

Today was my big day at the urologists.  It really wasn't that exciting, but I was glad to finally be somewhere where they expected me to pee as soon as I walked in.  I'm generally really good at having to pee... all of the time.

Anyways, we just talked about my symptoms and ordered some tests to be done.  The doctor has a hunch that it could be Interstitial Cystitis (which is when the lining of the bladder is inflamed, therefor causing a whole lot of pain and discomfort).  Unfortunately, this would have nothing to do with the rest of my illness, and it's also not curable, but people find relief from different types of treatment.  Another unfortunate thing is that there is no definitive test for it, so we get to use the good 'ol process of elimination.  I did have blood in my urine (which isn't a typical symptom of IC), which makes things a little more confusing.  I have a bladder/kidney ultra sound next Monday to rule out some other things, and then I go back to the urologist in 2 weeks to talk some more, and hopefully figure out what's going on... at least with that part of my body.  Meanwhile, I have the pleasure (NOT) of deciding whether or not I should have a probe done to look inside my bladder, and if I would like to try some more meds.  I don't like it when doctors leave decisions like that up to me.  He prescribed me some medicine that will make my pee orange and syrupy (and hopefully make my bladder feel a little better).  Sounds fun...

I was pretty upset after the appointment, because my ideal solution to this problem would be that everything is related and we just need to figure it out and take care of it.  It's hard for me to be okay with the fact that it might be a lot more complicated then that, and I also tend to have a bad habit of thinking that my "plans" are the best way that God will work through this.  God's good at reminding me that I'm not in charge... and that's a good thing.  A really good thing.  God is bigger than urology appointments.

I have had a really rough past few weeks.  It has seemed like I've been getting worse, and I've been having a lot of really bad bone/muscle pain and fatigue, but... these past 2 or 3 days have been better, so I'm enjoying a little bit of relief. :) We're trying to figure out where to go from here, which is why we were kind of hoping the urology appointment would give us a little more direction.

On the bright side, I am really, really, reaaallly enjoying PT!  It has been a huge blessing for me, and being able to do something that I enjoy makes the not so enjoyable parts of this a whole lot easier.  I have a lot to say about it, so hopefully I'll get around to writing a post about it!

Still here!

Happy June!  It's been awhile, but I'm still alive.  The past few weeks have had a whole lot of ups and downs, but here's the latest medical scoop before I get into more fun things, like Jesus and radishes:

I received my blood work results from a few weeks ago.  Lyme is negative for the 8th time.  We're happy about that, because if I had 7 negative results and 1 positive, I'd be very confused.

They also tested for epstein barr (aka mono), not because they think I've had it this whole time, but because I've been exposed to some people with mono lately and I've also been more symptomatic lately, but that was negative, too.  That's also a "good" negative because having mono would just really complicate things at this point.

So, just two new negatives that we already had several negatives for.  Nothing to complain about there!

I see the urologist on the 12th, and that's a very good thing.  My bladder is wacko.

Anyways, that's enough medical stuff for now.  I've had a lot of hard days lately,  mainly because I've been getting really anxious about silly things.  I'm much better with the physical pain/discomfort than feeling like I'm going crazy. I tend to think that  I just need to work harder, pray more, or just, well... be better.  Whatever that means.  But, this verse keeps coming to my mind:

"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."
- 2 Corinthians 12:9

The truth that I have to keep reminding myself is that I've got nothing to prove.  God has put me in this situation because He knows that it's the best way to use my life for His purposes.  God's still good.  Perfectly good.

... and His grace is sufficient for me.

Oh, and radishes.  My parents and I planted peas, radishes, 4 different types of tomatoes, beans, sunflowers and wildflowers during memorial day weekend, and we're going to plant a pumpkin patch when the weather gets warmer!  Here's what it looks like so far:

We have the peas and radishes in a raised bed, the sunflowers are next to the raised bed, the wildflowers are planted waaayy in the back of the garden, and most of it will be pumpkins!

The tomatoes are planted in the orange bags (one is missing, I know. It's still inside.)  The beans are in the blue bags!

And THIS, is what I saw when I went to go check on everything tonight... some little radishes popping out!

Doctors and dino eggs and everything else

Last week was a really tough one, but I'm still alive!  I was getting attacked by a stinkin' headache and nausea from Monday - Saturday, so it was a bit rough and I wasn't able to sleep very much.  I also had a doctor appointment on Wednesday.  We chatted, did some blood work, and he referred me to a urologist to try and get my bladder issues straightened out.  We're waiting for the results from the blood work.  He also checked out my mysterious lump (affectionately known to many as the "dino egg") on my right leg, because none of my doctors had come to a conclusion about it last year.  He almost had me get more scans done to check it out again, but he's pretty certain that it's a muscular deformity (which means we have 2 doctors agreeing on the same thing... which is pretty unique in my case), because it disappears when I relax my leg, and tumors don't do that.  It's also not growing and it doesn't hurt, so there's no sense in going in to remove it, and we know it's not fluid filled because it didn't show up on the MRI last year.  I've been exposed to quite a bit of radiation already, so doctors aren't just going to randomly send me to get scans done unless there is something that they really feel is worth looking at.  I'm trusting my doctor on this one.

I was feeling really down and discouraged for most of last week.  I guess it just seems like this has been lasting forever, and doctor appointments get me all anxious about the "what if's," and then, before ya know it, I'm an anxious and depressed mess. However, God has given me several reminders that he is STILL in control, and I'm trying really hard to just trust him and take one day at a time... but I could use a whole lot of prayers.  I honestly don't get how people go through these things without knowing Jesus.  I'd be hopeless.

I do have some exciting news!  I started volunteering at physical therapy, and I really enjoy it!  I was the happiest that I was all week when I came home from pt each time, so I know that it is a good thing for me to be spending some time doing this summer.  The people who work there are very encouraging people and they've given me more responsibilities than I expected, which I'm really happy about!  I thought that I wouldn't be doing very much with patients, but I get to work with them a lot and I love it!  Helping other people is a great way to get my mind off of my own problems, and I'm also learning a lot.

This week is off to a better start, and I'm choosing to keep my eyes fixed on Jesus, because he knows what he's doing!  Well, there are a lot more reasons than that to keep my eyes fixed on Jesus, but... you get the point...

Stay light, heart.

There's a lot about being sick that threatens to mess with my sanity and weigh my heart down. 

It's a lot more than just not feeling good and spending way more time than I'd like wrapped up in a blanket, asleep on the couch.  Being undiagnosed just complicates things even more.  It leaves me with a lot of "what if's."  What if they never figure this out? What if I have (fill in the blank)? What if I should've gone to a Lyme specialist after all?

But then, somehow, usually in some unique, weird, sometimes funny way... God reminds me to "chill."  He's got it all taken care of.  One of my goals during this is to stay light-hearted... which, I've learned, comes with trusting God.  I'm not nearly as good at that as I should be by now, but I'm really glad God's love isn't like human love.  I'm glad instead of turning away when I fail at trusting him, he just keeps giving me more reasons to trust him.  Sometimes it just takes a change in perspective to see it.

This weekend was a very busy weekend for me (probably not for a normal person who doesn't take a nap between each thing they do...), but it was full of good things.  I tried to take some pictures, and I'm glad I did because when I looked at them this afternoon, I realized how many people, things and experiences God gave me to smile and laugh about.  It's a good thing my family laughs a whole lot, because otherwise I might be insane by now.

On Saturday morning, my family and I  joined my highschool coaches at Jamesville Beach park to time the 5k for celiac disease.  My dad has really gotten into timing races, and I love when I get to join in on the fun and spend some time with people who I don't get to see while I'm at school.  It was also a perfect morning for the race... sunny with a high of 75. :) This is a picture of some of the equipment...

After spending a few hours of the race, I crashed and slept for a few hours at home... and then I woke up cranky, because I thought I should be running and that I was just lazy (that's the downside to helping at races...).  But, my mom and I went for a walk and she talked some sense to me... and you really can't be sad while walking in place like this.

When we were walking back to the house, I guy drove by in a lawn mower.  Most of our traffic consists of tractors and milk trucks, and the lawn mower just seemed like the funniest thing in the world at the time... by the time I took the picture, the lawn more was kind of far away...

This morning, my friend Marie and I took her lambs for a walk.  We might just be the only people in the universe who take lambs for walks down the road.  It's one of our favorite pastimes.

If I ever become so serious and my heart so hard that these things don't make me smile and chuckle, I give you permission to slap me.  And then tickle me so that I learn how to laugh again.  But... don't worry, I plan on continuing to laugh at lawn mowers and the idea of walking sheep down the road... even while I "walk through the valley of the shadow of death," 'cause I've got a God who's taking care of me, and I don't need to worry.

(and that same God created llamas, and they're funny)

A few things...

1) My brain feels like it's cooking because of this pesky fever.  Writing a list seemed much easier than trying to write comprehend-able paragraphs.

2) The past few days have been hard.  We're in between getting our previous plans (NIH) tossed out and trying to figure out a new plan.  I have an appointment next Wednesday with my primary care doctor, and then we'll go from there. 

3) Although the past few days have been hard, today's been a lot better.  A friend of mine sent me an encouraging message about some of the ways that God has worked through this to inspire other her... a few kind words go a loonnggg way!

4) I found out at the end of the semester about a really cool volunteering opportunity that I have!  It's actually kind of a cool story.  My mom's been going to pt for her hip, and whenever her physical therapist told her to do a certain stretch or exercise, I guess she said "my daughter told me to do that, too!" Eventually, he told her that I should come volunteer over the summer.  I contacted him after she told me, and I'm starting next Tuesday!  For now, I'm only going to go twice a week... but I'm really excited!

5) The Yankees are winning ;)

DONE! (And a reply from NIH)

I finished the semester on Thursday!  It's a big deal for me, because there were many times when I didn't think I was going to be able to make it through this one.  School by itself is enough.  School and a mysterious illness is pretty ridiculous.  But, God provided and took care of me in some pretty incredible ways... and left me wondering why I ever worry.  None of the things that I worried about happened, and even when bad, discouraging things happened, God was still right there, still in control.  I really can't explain how happy and thankful I was when I walked out of my last final!

We heard back from the National Institute of Health the same day that I came home.  They didn't accept me into their undiagnosed diseases program.  I was really bummed and anxious about it at first, despite the fact that I had walked out of my final a few hours earlier thinking about how silly worrying is.  I have an appointment with my primary care physician in a couple of weeks, so we'll go from there.  I'm thankful that I heard back the day I came home instead of waiting all summer to hear back.  Now, we can start heading in other directions.

My fever's making me feel really sick now, so I'll try to write more within the next few days!  And hopefully, my stuff will unpack itself... :)

p.s. IT'S SUMMER!!!!!!!!!!!

Merry Christmas! Oh wait...

I wanted to post this picture from Friday... it's not an amazing picture, but I took it with my phone while I was out on a little bike ride because the goats and cows were out, and that means spring is here.  It was 75 degrees and sunny (and that was 3 days ago!).

This picture, on the other hand, is what it looked like out my window this morning!  It was 35 degrees and snowing!  I think I was the only person on campus who was excited about it.  I might have eaten a candy cane and sang Christmas music today...

This week is our last week of classes before finals week!  I can count the days until I go home on my fingers now.  That makes me happy.  Besides that, I am hanging in there.  I can't sleep much because my bladder always feels uncomfortable.  Apparently, overactive bladder medicine isn't what it needed, because it doesn't feel any better and I've been on it for quite awhile.  We're going to take care of that issue when I get home.  Not sleeping enough doesn't make it any easier to deal with the fever and everything else, but I just need to make it through 10 more days!

Easter break.

I am home for Easter and I'm getting some much needed rest.  I've been too sick to do much besides sleep since I've been home, which has been really hard for me.  I'm trying to remember that getting through a year of school while being sick is a big deal, and that I need to rest during this break anyways so that I'll have enough energy to get through the last 4 weeks of school... yet I'm still good at starting to think that I'm just a boring, lazy bum.  Chronic illnesses are just so weird and long and sometimes boring... but, they are also a brilliant way for God to teach me things that I probably wouldn't have learned any other way.

I've heard it said that when people are sick for a very long time, they can start to grow bitter.  I've met bitter people, but I've also met some ridiculously awesome, joyful people who have been through enough to make even the happiest, optimistic person become bitter... yet they're still joyful.  Those are my favorite people, because it's obvious where they get their joy from.  Being sick has taught me that joy, peace and faith are so much more than feelings, and that if I ask God for them, God does something really cool.  He just dishes them out to me like it's what He's been waiting for me to ask Him for ages.  Sometimes I have to keep asking God for the fruits of the spirit throughout the day because each struggle that I go through every day can drain me of anything good if I let it... but, each struggle can also be used as a way for God to teach me more about Him and the person that He's molding me into, if I let it.

Don't get me wrong, I'm not a fan of being sick. The past few weeks have been especially hard because of how tired I am.  I can't explain how sick I am of this fever.  I think people forget that I have a fever sometimes, and that when you have a fever, well... it's not always easy to think straight, or to hold a conversation, or to just stay awake in general.  I just always enjoy time to think and reflect, because then I have time to see a tiny glimpse of what God's been up to.  And He's been up to a lot.
 
"That is what mortals misunderstand. They say of temporal suffering, 'no future bliss can make up for it,' not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory."
-C.S. Lewis, The Great Divorce

(It took me a few days to get this posted, because I've only been able to write little bits at a time... so I didn't know it was going to be the day before Easter... so... Happy Easter!!!!  Christ has risen, and that's something to be joyful about!)