Tuesday, August 27, 2013

PT and Baby Steps Toward Improvement

On Monday, I started Physical Therapy... JP Dr told me that the PT was going to be my new best friend for life... between my arthritis and my EDS, I supposedly will require some form or fashion of PT for, like, forever...and the PT confirmed this at the appointment. Oh joy.

The PT lady was great - not only does she have experience working with people who have Ehlers-Danlos Syndrome and arthritis, she shared with me that she has had her own sturggles with autoimmune disease, abdominal surgery, and steroids (she was on steroids for over 15 years with many failed taper attempts, but has finally gotten off of them!), so it was really nice to talk to someone who "gets" it, not just professionally...but also because she's been there. She also has a certification in doing myofascial release on people who have adhesion and scar tissue! How perfect is that? It's like God hand-picked her to be my PT. Just another everyday miracle in my life!

So... the appointment was a bit overwhelming because there is such a very long laundry list of problems that need work! We will have to work really slowly due to my level of pain, fatigue, my dysautonomia and just the screwed up nature of my poor body! The last thing we want is to make anything worse!

The first goals are to start aquatic therapy, and decrease my pain level by doing myofascial release on the scar tissue in my abdomen from all my surgeries. She believes that the pain and scar tissue in my abdomen and pelvis from all the inflammation, disease, abscesses, and surgeries has caused me to change the way I hold my body (in addition to being so loose-jointed from EDS), and the postural changes are contributing to my chronic neck and shoulder pain. She also thinks that at least some of my neck and shoulder pain is what's called "referred pain." That's when a problem in one part of your body is manifested as pain in a different part of your body - the classic example is someone having pain in their left shoulder or arm from a heart attack. Jack Black, my pain doctor, has also suggested that my neck and shoulder pain might be referred pain. I'm willing to try anything at this point... I'll blog about this soon, but over the summer, my pain has been a HUGE issue, and we've had to TRIPLE my pain meds, and despite this, I am still hurting a LOT and rarely able to sleep through the night. Not. Fun. Anyways, I will be very excited to see if this will help my pain!

Since literally every joint in my body is affected by arthritis and EDS, we will eventually build up to working on other joints and muscles, and I'll get exercises and stuff to do on my own. Maintaining my mobility, building strength, and protecting my joints to preserving as much function as possible are very important priorities.

I'm thankful that I have finally been stable for long enough to start pursuing things like PT that will (hopefully) help me get stronger and healthier! Since 2009, I feel like I've been in "survival mode:" bouncing from one crisis to the next, barely recovering from one surgery when another major illness would land me in the hospital again. It has been NINE MONTHS since I've been admitted to the hospital, which is a record for me since I got diagnosed with Ulcerative colitis back in 2007. I've also been major surgery-free (and also minor procedure free - I haven't even had to go under anesthesia) for 16 months, which is the longest I've gone by FAR since I started having surgeries back in 2009. While life is far from easy or pain-free, and while I still struggle on a daily basis with a LOT of symptoms and difficulties, things are so much better than they have been in the past. I wake up every day and I thank God for the level of health He's allowing me right now! I don't take it for granted, and I pray that I use each day for His glory!

Hannah ;)

Monday, August 19, 2013

In Which The Clinical Trial Gets Exciting

So… yesterday I finished out weekend 1 of the clinical trial!

Like I detailed in the earlier post, on Friday night, I checked in, had my vital signs taken, and went to bed in the comfy bed under the fuzzy chocolate-colored blanket. I unfortunately had quite a bit of pain, and consequently, didn’t sleep well, but that’s fairly standard for me these days.

A lil dizzy and nauseated...
On Saturday morning, they woke me up dark and early, took my vitals as I stayed lying down in bed, then I took my meds as usual. After an hour or so, they returned, and I stood as they recorded my vitals every two minutes and had me report any symptoms I had. After several minutes, I felt hot and light-headed, so they had me sit down to complete the 15-minute exam. The nurse seemed a bit surprised/disappointed that I had POTS symptoms while on the medicine (further evidence that I eventually need to be on a higher dose).

On Sunday, they repeated this testing with one difference… they did the standing test BEFORE I took my medicine. I didn’t really expect there to be a dramatic difference without the meds. I guess I figured that some of the medicine would somehow still be in my system or something.

That was fun. Not.
But… I was wrong. After standing for about 3 minutes, I got so confused that I couldn’t think of numbers in order to rate my symptoms on a scale from 0-10. I felt terribly hot and nauseous and light-headed and confused. They quickly sat me down, but apparently I continued to turn bright red and was listing badly to the right. They sat another nurse down by my side, but almost immediately decided they needed to lay me down, as I was not able to answer their questions coherently and was about to pass out! They had to direct a fan at my face, cover me with cold washcloths, and have a trash can nearby “just in case.” Just like that, I was (fairly dramatically) disoriented, overheated, nauseated, shaking, sweating through my clothes, and tachycardic (high heart rate)…with all my signs and symptoms being dutifully recorded by the research nurse and her two assistants.

It was rather embarrassing. After I’d recovered a bit, I kept apologizing, but they told me that THEY were sorry – that they did this to me by testing me without my medicine. Once I was less nauseated, they gave me my medicine and recommended that I sleep for a while or at least stay horizontal until the medicine kicked in and my body had a chance to recover! I was able to rest and took a little nap, then, after some paperwork, felt sufficiently recovered to go home!

This is what the trial is hoping to fix...
Part one of the clinical trial is completed! They gave me a bottle of their midodrine to take for the next two weeks, and in two weeks I’ll report back for another Weekend-O-Fun. During Part Two, they will repeat the same procedure with an added twist – one of the days, they will give me a “mystery pill” that may be midodrine, and may be a sugar pill – none of us will know which – and the tests will be performed.

Based on Sunday morning’s reaction, however, I’m fairly certain that we’ll be able to tell if I got the sugar pill or the real McCoy.

As embarrassing as my reaction was, it was quite telling and sobering to realize just how much trouble my body has standing still! Even with the medication, I was unable to stand for more than 6 minutes. Without the medication, standing for a mere three minutes resulted in my body becoming extremely ill quite rapidly. It’s rather unbelievable to me just how dependent my body is on the medication, and just how tough of a time my body has maintaining any sort of homeostasis when I stand still.

What’s curious to me (and probably to others) is that, thanks to many medicines and lifestyle adaptations, I am able to function fairly decently in everyday life these days – I walk around okay, I’m attending school full time now…so if I can do these seemingly more physically challenging activities, how come I can’t stand up? It’s a weird dichotomy to be able to function at a very high level in some ways but to be profoundly disabled in others. It seems contradictory, and even thought I might be faking or imagining how hard it is for me to stand. 

How muscles help pump blood!
Basically… when I’m walking or in motion, my muscles serve as a pump to squeeze the blood back from my extremities, but when I stand, because my blood vessels are too stretchy from my Ehlers-Danlos Syndrome, they dilate, and all the blood pools in my legs. This leaves insufficient blood flow to my brain (causing my confusion) and other organs and muscles, and I feel quite terrible and dizzy. My body thinks, okay, there's less blood volume, so I must work harder to circulate the remaining blood. So it kicks into flight-or-fight mode – leading to shakiness, a rapid heart rate, sweating, hyperventilating, turning red, etc. And I continue to feel awful, and have to go lay down for some time until my body calms down. 

Anyways, that was my Sunday… as usual, nothing is ever boring in the life of Semi Colon!

Hannah ;)

Sunday, August 18, 2013

Puedo Acostumbrarme a Todo

In college, I read a play entitled Historia del hombre que se convirtió en perro, or The Man Who Turned Into a Dog. The common refrain of this short play was that "los seres humanos se pueden acostumbrarse a todo" (human beings can get used to anything). This (satirical) play discusses an impoverished South American man who loses his job. Destitute and desperate, he searches and begs for a job, and graciously accepts the only position that comes available... he is hired as a watchdog. Over time, he gets used to barking, eating and drinking out of a bowl, living in a doghouse... and in the end, neither you nor he (nor his wife) can tell if he's a man or a dog.

When your day-to-day life radically changes, it's very weird how "normal" the once abnormal becomes to you. Once you live a certain way for awhile, it seems so completely commonplace to you that it becomes almost unremarkable, and you forget how unusual and different your life really is.

Such is my life with my GI issues.

After exhausting the medical treatments available for my intractable Inflammatory Bowel Disease, I endured 5 major surgeries to rid my abdomen and pelvis of over 7.5 feet of inflamed bowel, large abscesses, and fistulae. Consequently, I now have a permanent ileostomy (named Squirt) and a shortened GI tract that's twisted with adhesions and scar tissue. I live with chronic pain, nausea, dehydration, motility problems, and have difficulty absorbing medications (and sometimes, nutrients). I can only eat liquids, as solids cause bowel obstructions, which cause painful cramping and become a medical emergency with much more severe symptoms if they last more than a few hours.

It's now totally normal to me that a small piece of my intestine has been rerouted to my abdomen, and that I wear a bag over this intestine to catch my waste, and that I go to the bathroom many times a day to empty my poop out of the little bag that sits on my stomach.

And it's totally normal to me that I haven't chewed my food or used a fork since March, that a blender is my staple kitchen utensil, that I only drink my nutrition. It's normal that, since I can't absorb pills, I spend over an hour each week drawing up dozens of doses of liquid medicines in oral syringes. It's totally normal to me that my infant niece and I will soon share approximately the same diet and that my Google history brings up terms like "blended diet" and "homemade baby food" and "cute pictures of baby kittens" (okay, well, the last one is unrelated to my GI issues...).

But anyways, even though you deal with it day in and day out, sometimes you have experiences that remind you that your life is quite strange. Like when you move in with new people and they start to notice that you run the blender three times a day and your grocery store spoils contain an awful lot of sports drink and soup and popsicles and not much else. Or when a person turns up their nose and asks as politely as possible, "Um...what IS that?!" when you pull out a container of green pea pureé out of your lunchbox.

And then, you realize. While you can get used to pretty much anything, and while it can seem normal to you to photograph wounds around your ostomy during weekly bag changes and email said pictures to your doctor to document the healing progress (or lack thereof)... it may be commonplace and everyday... but it still just isn't NORMAL. I'm content with it, to some extent because of the amazing adaptability that God has placed in humans - one can acostumbrarse a todo (get used to anything)... but also for another reason.

God wrote a story through the life of a man named Paul that's a bit of a Christian parallel to Historia del hombre que se convirtió en perro. Paul, born into a high-class Jewish family, a prestigious member of the most esteemed religious group of his day, lost all he had when Christ chose him as an apostle. He suffered greatly for following Christ - he was beaten and imprisoned and shipwrecked and starved and cold and stressed and unfairly arrested and tried and put down by even the Christians that he gave up his former life to serve and teach. While he didn't turn into a dog, he went from being an elite member of society to a hungry, homeless outcast and criminal.

Yet as he reflected on his life, he said, "I have learned to be content in whatever circumstances I am.

I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need."(Philippians 4:11b-12). So what was his secret? It wasn't just "getting used to it."

Paul continues on to say, "I can do all things through Him who strengthens me."(Philippians 4:13). His secret to contentment in "bad" or "good" or "normal" or "abnormal" circumstances was Jesus Christ. Though the strength that He gives, Paul (and I) can endure anything.

So as I drink my meals or double over with blockage pain because I tried to eat a few bites of normal
food (as I'm supposed to try every several days) or take medicine to allow what I eat to stay inside me long enough to get absorbed, I can live this abnormal life, and see it as normal and be content... and not just because I've grown accustomed to it. I can consider my trials joy (James 1:2-4), and rejoice in my sufferings (I Peter 1:3-7, Romans 5:3-5) because they are bringing me closer to my Lord Jesus Christ. "For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison." (II Corinthians 4:17). My great and gracious God doesn't ask me to just stoically acostumbrarme (get used to it), but gives me contentedness for today, a hope for the future, and the strength to carry on.

Hannah ;)

Saturday, August 17, 2013

Where is Semi Colon?

At home?

In the hospital?
No, not exactly…

On vacation?
Well…not exactly…

Somewhere in between.

This weekend, I am participating in a clinical trial! This is very cool! For once, I get to use my health issues to 1) help others who are suffering, and 2) bank a little bit off of my disease, and 3) get a nice “weekend away.” I don’t really see any downsides to this deal!

My standing heart rate before Midodrine
How did this come about? Well, back in the spring, I started Midodrine, a medicine for my POTS, that has changed my life (no exaggeration). Before starting this med, I got out of bed maybe four hours a day, on a good day. Most of my time was spent laying down in bed. Standing (and even sitting) caused my heart rate to skyrocket, I’d shake all over, get sweaty, nauseated, confused, dizzy, lightheaded…not fun.

Since starting midodrine, I’ve gone back to school full time and been able to live independently again (mostly) for the first time in three years! I still need a fair amount of extra help, have bad days, spend a lot of time in bed, and my stamina is still not great, but overall, my POTS symptoms are SO MUCH BETTER. My heart rate at rest is now about 15-20 beats per minute lower than it used to be, and my heart rate when I stand up is an unbelievable 30-60 bpm lower! My body used to feel like it was having a panic attack all the time - as if I were constantly in "fight-or-flight" mode. Now, it feels much “calmer” overall. I feel much more energetic than I used to – and my family, friends and even my doctors have picked up on this. JP Dr asked what had changed, commenting, “You usually look (forgive me for saying this) half-dead, but you look so much perkier now!”

Anyways, the manufacturers of the medicine lack some data for the FDA. They must submit this data ASAP, or else the FDA could withdraw midodrine from the market! This would be devastating for the thousands of people with dysautonomia who literally depend on midodrine to be able to get out of bed! All that they need to submit is evidence that midodrine works.

So, this translates into me spending two weekends (one now, one in a few weeks) at my doctor’s office (which is equipped with a shower, kitchenette, and bedroom with a very comfortable large bed and a very soft chocolate-colored blanket (I’m a sucker for soft blankets! They take my pain levels down better than medicine!). While I’m at the clinic, my vital signs are taken at night, early in the morning (before I take my medicine), and then again as I take my medicine. Then, an hour or so after taking the medicine, my heart rate and blood pressure are recorded every two minutes as I stand (or sit, as I get dizzy) for 12-15 minutes. I rate my symptoms on standing (if I feel dizzy, lightheaded, etc). This is repeated on two mornings. Once we’re done with the testing, I am free to do whatever I’d like to do with my day (within reason, of course). I simply must be back and ready for evening vital signs. I was tired today, so I stayed in and rested, mostly, but did make a Target run and dropped by a friend’s house. Now I’m in for the night, and tomorrow morning they will repeat the same drill with vital signs and medication!

In a few weeks, I will return for a similar weekend routine – except this time, instead of me taking my medicine, they will give me a pill – it may be midodrine, or it may be a sugar pill – and perform the same tests, then compare the results. Obviously we would expect that my vital signs would be more stable on the midodrine than on a placebo, and the FDA needs data regarding this.

In addition to helping midodrine stay on the market, I actually receive a stipend for my participation in the study! This is awesome. I’m getting paid for being sick! If only I could turn this into a more permanent thing… ;) Oh yeah, that’s called “Disability.” Anyways, I plan to use this money to help fund some treatments that my doctors have advised me to pursue but aren’t covered by insurance.  

Not only am I getting paid to take my medicine, but I am also being fed while I’m here at the office.
The research nurse even brought me a bunch of purple Powerade – and those of you who know me know that that’s the way to my heart! I must drink 2-4 liters of fluid per day, and a lot of that is in the form of half-strength sports beverages with added salt (and, per dentists’ orders, I now follow each swallow of gatorade with water to try to minimize the sugar on my poor teeth). So seeing that 8-pack of purple powerade…what a beautiful sight… mmmm…. ;)

At my last visit this spring, Dr. House indicated that I could increase my midodrine slowly, which I’d been doing over several weeks. I had reached what I thought was the maximum dose he said I could take. Turns out, however, that I can take up to THREE TIMES as much as I’m on now… and in fact, he wants me to continue increasing my dosage to gain better control of my POTS! We won’t change my dosage until after I’m done participating in the clinical trial, but I am already excited! If I feel this much better on 1/3 of the goal dosage, imagine how good I’ll feel once I get on a higher amount!

Goodnight from under the fuzzy chocolate-colored blanket,

Hannah ;)

Wednesday, August 14, 2013

Catching Up....

Hi, Uh, hi.

It's me, Semi Colon.

I know, it's been awhile.

For the two months since I've posted, I've been out living life and haven't had time to sit down and write about my health, which is AWESOME! Thankfully, although I've had several ER visits, I have not had a single hospital admission - and this is the FIRST summer since 2007 that I can say that. What a blessing!

Still, much has happened, health-wise, and I have a bit of time on my hands at the moment, so I'll be publishing posts (some of which will be back-dated).

My goal is to publish one post per day for the rest of the week, so keep checking back in to find out what's been going on in the exciting health adventures of Semi Colon!

Here's a list of newly-published posts:

Dental Blessings, Part 1

Dental Blessings, Part 2

In Which Semi Colon Impresses the Rheumy

Hannah ;)