Wednesday, June 19, 2013

In Which Semi Colon Impresses the Rheumy

Today, I had a follow up with JP Dr, the Rheumatologist. I really like her. In fact, I really like ALL of my doctors right now, and I am so thankful to be able to say that! I am thankful for each one of them, and they all are very helpful, listen (most of them, most of the time), are understanding and don't minimize my concerns.

It was an awesome appointment because my joints are doing quite well. They were so very swollen and inflamed back when I first started seeing JP Dr about a year ago, and they remained that way for months, despite high-dose steroids and methotrexte injections twice a week. Thankfully, at this appointment, just one knee was swollen! I am still having a fair amount of morning stiffness and can't seem to get going on rainy days, but she expressed that that is probably a permanent thing at this point.

This was my first appointment with her since I started seeing Dr. House and got my new diagnosis of Ehlers Danlos Syndrome. Dr. House emphasized that the Rheumatologist is the main team leader in combating the musculoskeletal effects of EDS and said that she would be very interested to hear of this new diagnosis.

My bendy elbows
He wasn't joking. She asked me to show her my hypermobility, and when I did my elbow thing, she literally jumped out of her chair and ran out of the room, returning momentarily with a camera. "Mind if I take some pictures?" She photographed me demonstrating the hypermobility in my thumbs, fingers, elbows, knees, and back, as well as the stretchiness of my "velvety" (her words, not mine... this is a rather pleasant aspect of EDS - velvety soft baby skin!) skin which is so transparent that you can clearly see the venous network beneath the surface. She took several pictures of my flexible elbows, as they are especially impressive, apparently. ;) My favorite was when she took a sticky note, scribbled "EDS!" on it, stuck in on my elbow, then had me "straighten" my arm for a picture.

Apparently I am the worst case she has ever seen, and my joints are so dramatic that she wanted pictures to be able to show the medical students who rotate through Rheumatology! My joints are more "dramatic" than the textbook pictures... I'm gonna be famous, folks! I forgot to ask if she wanted a picture of me demonstrating my tongue flexibility (I can pick my nose with my tongue... it's impressive). Also forgot to ask if I get a royalty every time she uses my picture. ;)

So since I now have several doses of Cimzia in my system and I have had very little troubles overall from an arthritis standpoint (no major flares, little swelling, great mobility, no hospitalizations with SIRS reactions in months and months), she asked me if I wanted to do a trial of dropping methotrexate!!! I have been giving myself weekly injections of this chemotherapy drug for months, and I HATE it. I honestly DON'T mind the whole giving myself a shot part... it's the after-effects. Some weeks, I barely feel anything, but most weeks, some or all of the next 24-48 hours are spent in bed feeling like I just injected myself with poison (which... is the truth. It's a chemo drug, after all). Migraines, severe nausea, and just feeling very weird overall (they call it "the methotrexate blahs." It sort of feels like you're out of your body or under water - like a pre-coffee haze that doesn't let up). Anyways, at the suggestion of dropping the meth shots, my face lit up like a 100 watt bulb, and JP Dr laughed and said, "Guess I didn't have to talk you into that, did I?" I will just watch to see if my stiffness increases, or swelling or fevers return. If so, then we will have to discuss going back on it, but she said we might be able to experiment to see if my joints can remain under control with a lower dose.

Autoimmune Inflammatory Arthritis aside, she explained what is happening in my joints and muscles because of EDS and why it causes so much pain and damage. The defect in my collagen causes my muscles, ligaments, and tendons to be too stretchy to hold my joints together properly. They also are much more fragile than normal, and also fail to heal normally. The stretchiness results in my bones constantly rubbing on each other in ways that they shouldn't, so even normal daily activities cause "microtears" to occur in my extra-fragile muscles and ligaments from the trauma of being over-stretched and pulled against bones. Then, unfortunately, these micro-tears take much longer than normal to heal. This results in a lot of pain, and the bones will start to erode much more quickly than they should, and to form bone spurs, which in turn cause more microtears in muscles, and the cycle continues. She told me that she expects me to develop osteoarthritis in the next few years, if I haven't already. This is the "normal" arthritis that people get with aging, but I will get it much, much sooner due to the EDS. So... if you're keeping score... on top of my Autoimmune Inflammatory Arthritis and EDS, I will develop/possibly already have yet ANOTHER type of arthritis! I hit the jackpot, it seems...

She wants me to do several new therapies... I need to see an Occupational Therapist for my hands, which give me a lot of trouble. She said that both the damage from arthritis and the EDS cause instability and pain and that's why I struggle with fine motor control and gripping. She wants me to go to OT to learn "joint protection techniques" to prevent injuries to preserve the integrity of my joints, muscles, tendons and ligaments as much as possible for as long as possible. I've mentioned before that a lot of people with severe EDS wind up in wheelchairs due to POTS and their joints becoming so unstable/debilitated that they can no longer walk. I am also going to start massage therapy (yesssssss!!), do a month-long course of Aqua Therapy, and get evaluated by Physical Therapy. The goal of all of this is apparently to exhaust me and fill my calendar with even more medical appointments. No, really... I hope that these people are able to help me and I understand that it is critically important for me to learn to take care of my body in light of this new diagnosis... especially when because I have so many other complicating factors going on with my health. I am very interested in NOT being in a wheelchair for as long as possible!

Hannah ;)

Thursday, June 13, 2013

Dental Blessings, Part 2

I went back for round 2 of Operation Fix Hannah's Teeth. After my last visit where I used up the whole office's supply of numbing medicine, didn't get numb, then almost passed out and needed a ride home, I wasn't sure they'd still want me! If I were the dentist, I'd say, "Um, let's forget about that deal and have some other dentist take care of your, um, "special" dental needs." But no, as I walked in, seemed like the whole office was greeting me and genuinely glad to see me (maybe they were looking forward to seeing what would happen to me THIS time).

Thankfully, this time everything went off without a hitch. I got numb almost instantly with only a tiny dose of medicine, astounding Dr. Z. Go figure.

But it gets EVEN better.

At the end of my appointment, the sweet lady who had driven me home last time when I was smashed on novocaine walked in the room. She was bearing a huge box and a card. She started handing me the card, so I held it... there was some general hubbub, and I thought, "Oh, how sweet... it's someone's birthday and they're giving them a card and present..."

Um... the card and box were for ME and the box contained a brand-new juicer!

I was so confused! I mean, who in the world gets presents (besides toothbrushes and floss samples) from their dentist?!!? I was shocked speechless... again, "thank you" seemed so very inadequate...

Seems that when I was being driven home, the hygeinist was asking me about my liquid diet. She was asking the ins and outs of how I made sure I was getting good nutrition, and I mentioned that I use the blender an awful lot to make "blended soup", but I should really get a juicer to get more fruits and veggies in my diet. So... she went back to the office and got everyone together and they bought me a juicer.
WHO IN THE WORLD DOES THIS STUFF HAPPEN TO?? I am the most blessed person alive. God is so very, very good to me. And my dentist's office is quite obviously the best in the whole entire world. Sweet Dr. M and Dr. Z, and all the staff... how can I ever thank you?

I've been having some great adventures in juicing and enjoying tasty, refreshing, and nourishing juices! So yummy!

Yummy carrot juice!
Hannah ;)

Sunday, June 9, 2013

Hope in God

One year ago, I was in the midst of my 40 day hospitalization, and at the lowest point of my life.

I was in the worst pain I'd ever experienced, and wanted nothing more than for the pain to stop.

It wasn't that the pain was under-treated; I was on pain medications in liquid, pill, patch, sublingual, topical and IV form; a regimen that included narcotics, three kinds of nerve pain meds, three kinds of muscle relaxants, anti-inflammatory meds, and high dose steroids. My nurses had to administer medications at least once an hour all throughout the day and night. I used bags of ice, heating pads, stretching, guided relaxation, and even aromatherapy!

And none of it was helping.

I continued to run fevers and my white blood cell count was so high that the doctors could not safely discharge me (for those of you who are medical... the elevated white count began prior to initiation of the IV steroids, didn't respond to broad-spectrum IV abx, and the differential was not consistent with a steroid-induced leukocytosis), yet all their searching for a source of the "infection" yielded nothing. My muscles were in such severe pain that I literally hadn't slept in days. This was a different and worse pain than I'd ever experienced. I would have traded practically anything for relief. I bawled my eyes out and writhed and paced my tiny hospital room endlessly. I couldn't imagine how things would ever get better: if the most powerful medications that man had to offer couldn't take the edge off my intense pain, how could I continue to live? I couldn't imagine remaining in this much pain for another hour...much less the rest of my life. I also could not imagine how I could possibly be glorifying to God in this position where all I could do was cry from pain.

In the middle of the night, I read these words from Psalm 42 and 43: "Why are you in despair, O my soul? ...Hope in God, for I shall again praise Him..."

My soul was in such deep despair. I hope and pray that I never experience that degree of pain and despair ever again in my life. But even then, in the darkest moments, God was there. Maybe things weren't going to be good again today or tomorrow or next week. But I would one day again praise God for the help of His presence. One day, God would bring deliverance.

If you've read Semi Colon for awhile, you know that "HOPE" is "my" word. Romans 5:3-5 are some of my favorite verses, encouraging me to rejoice in my sufferings, because suffering produces endurance; endurance, character; and character, hope. It isn't a vague hope for a better tomorrow, it's the kind of hope that is an anchor for the soul. It's the sure knowledge that my eternity is secure in Jesus Christ, that no matter what this life brings, I have a savior who has poured His love into my heart and has reserved a spot in heaven for me where I will be with Him and without sin forever.

So being reminded to HOPE in God, and promised that I would again praise Him was exactly the reminder I needed.

That morning, a doctor who didn't know the details of my case walked in. He told me that nothing was wrong with me; I'd just been laying around in bed and not eating enough. If I would just get up out of bed, get moving and eat good food, then I'd be perfectly healthy.

This unfortunately wasn't the first time I'd heard this rhetoric (and sadly, it wouldn't be the last time, either). During this hospital stay, I was called a drug addict, accused of being lazy, malingering, depressed... I had nurses (and charge nurses) who walked in, observed my extreme pain, and turned on their heels and walked out, ignoring my pleas for help. But I also had wonderful caregivers who believed me and didn't give up on me. Nurses who came and sat in bed with me and rubbed my painful back and shoulders and wiped my tears during the long nights. Techs who brought me snacks (when I was able to eat) any time of the day or night to feed my steroid munchies in the hopes of offering me some distraction from my pain. A doctor who came by to encourage me even after I'd been discharged from his specialty's care. A nurse practitioner who thought outside the box and tried every conceivable combination of meds on the planet in order to get my pain down.

Anyways, at that moment, however, that one doctor's words were all that seemed to matter. They were  the straw that broke the camel's back, and after he left, I dissolved in a puddle of tears and begged my mom to take me home (against doctor's orders)... nothing they were doing in the hospital seemed to be helping, and if I were at home, at least I wouldn't have to put up with misinformed doctors coming in and telling me I was faking it. I felt trapped; I was in unimaginable pain, but the doctor said nothing was wrong with me... no one believed me... they would make me continue to live in agony... I had already been threatened with being sent to drug rehab or the psych ward (I'm not kidding!)... then I remembered the words I'd read in the night. My mom (bless her heart) listened to my tears and exhausted words with a discerning ear and comforted me.

And slowly... things began to look up. We listened to a sermon online. I took a walk. I talked to my "steroid buddy" on the phone. A dear friend came to visit and gave me a massage that brought some relief and brought a bag full of AWESOME bracelets that said "Hope" and "Romans 5:1-11" on them. And we decided to start a new medication. To say that this was a medication of last resort would be putting it mildly. There were many, many reasons to NOT try this medication, and there were few reasons to believe that it would work. It involved accepting that I needed an intense long-term, round the clock regimen of pain relief. I would have to be monitored very closely as the medication worked its way into my system. It was such a big decision that I saved the little blister pack that the first dose of the medication came in as a memento of the occasion.

And.... God allowed the new medication to bring relief. After a day or so, my pain went down enough that I was able to sleep. And I awoke the next morning feeling a bit more like myself, and a bit less like the drugged, crazy, stoned-yet-sleep-deprived-and-in-horrible-pain Hannah.

When the pain management nurse practitioner came in that day, the look on HIS face was also a new way to spell relief. He told me that he had never seen me look that comfortable (probably because I had always been in such intensely unbelievable pain since we'd met). When I told him that I was feeling some relief for the first time in days, he let out a huge sigh, and admitted:

"Good. Because we didn't really know if this would work, and if it didn't work, we had no idea what else to do."

Not very reassuring.... but it made me even more thankful that God allowed the last-ditch, what-the-heck-might-as-well-give-it-a-shot medication to work! Within the next few days, my pain went back under control, I was able to come off many of the other pain medications that weren't working anyways, and I was finally on my way home. The doctors ended up concluding that my body had a delayed intense autoimmune inflammatory reaction to the surgery, causing the high white count, fevers, and crazy pain (I was pretty darn sure it wasn't in my head - although c'mon, doctors, patients' minds cannot cause fevers, high white counts, swelling, redness and heat in every joint in their body...). This has been the reason that JP Dr, my Rheumatologist, believes it's so important to be very aggressive in treating my arthritis/autoimmune diseases with methotrexate injections, Cimzia, and steroids - these systemic inflammatory reactions can be very dangerous and are very, very bad for the body. We would all like to avoid them as much as possible.

So... here I am, a year later... I still face many challenges, take many medications and daily battle pain. In fact, I am currently in the midst of a pain flare. But - the intensity of my pain is much less than it was, and the overall health of my body is much, much better than it was a year ago. By the grace of God, I have not been admitted to the hospital since November, nearly 7 months ago. I have not had a surgery since May 2012, which is the longest I've EVER gone without a surgery since I started this blog in 2009. I just started back to school, pursuing the dream God has placed in my heart from the age of 3... and although school is a huge challenge, I face it one day at a time, praying for the strength to accomplish whatever God has for me that day.

One year ago, I could not imagine what life would look like the next day, let alone the next year. Today, I am praising God for the changes He's allowed in my life. I praise and thank Him for the trials, for the pain. Were it not for the suffering He's allowed, I would not have seen fulfillment of the words I read a year ago:

"Why are you in despair, O my soul? And why have you become disturbed within me? Hope in God, for I shall yet praise Him, the help of my countenance, and my God." Psalm 42:11

Hannah ;)

Saturday, June 1, 2013

It's Never Boring!

This is just a quick post to say that all is INNNNTERESTING as always in the life of Semi Colon. Two weeks ago, I started having a mild arthritis flare (fevers and chills every night, and a couple swollen, red joints in the morning). I also started having a pain flare... oh joy. I was taking my breakthrough pain meds... and they just weren't helping! Last Friday, I realized why. My pain medicine was not being absorbed (if you're wondering how I know I'm not absorbing them... I have an ileostomy bag... the pills are bright yellow... I'll let you piece together the rest). I started crushing the pills, but I still wasn't absorbing them.

A call to JP Dr led to the decision to bump up on steroids instead of down. A call to Jack Black the Pain Dr led to the decision that I needed to see him ASAP... which unfortunately wasn't until this Wednesday due to office closure.

Between last Friday and today, a lot happened.

There was lots of pain, little sleep, lots of dumping, little eating, lots of half-strength Gatorade with extra salt, calls to Jack Black's cell, trips to the pharmacy, an ER visit, innumerable unsuccessful attempts at an IV start, a superhero whose superpower is ultrasound ability to see veins and get IVs in them, an ER doctor who was very kind, a GOOD visit with Dr. House where we reached a truce and mutual respect and understanding for each other, a painful visit with Jack Black where we switched to a liquid form of medication, another new superhero who wears a pharmacist's white coat and comes in on his day off to special-order liquid medicine for Semi Colons, more dumping, more Gatorade, and finally.... less pain.

Currently, my stomach is not tolerating much more than clear liquids and everything is going through me at lightning speed despite my meds to slow everything down. Thankfully, I'm supposed to see Dr. FancyPants next week, so maybe he can work some magic and calm down my GI tract so the rest of my body can calm down as well.

I may blog in more detail about aspects of all this in the future.... but for today, that's all, folks!

Hannah ;)

Dental Blessings, Part 1

One of the not-so-fun aspects of my chronic diseases is that they seem to affect every single part of my life and health. I learned this a few months ago at a rountine dental appointment. I'd always had a clean bill of dental health, but unfortunately, somewhere in the last year, the combination of high dose steroids, not eating for days at a time, and constantly drinking Gatorade finally caught up with my poor little teeth. My mouth was filled with numerous teeny cavities between my teeth. Dr. M told me that I should just be thankful that it hadn't happened sooner and that the damage wasn't worse - the cavities, though numerous, were super tiny and early stage. He immediately started me on a prescription toothpaste (I know I take a lot of medicine, but now even my TOOTHPASTE has a prescription?!) to help reverse and prevent damage. He presented me with a "treatment plan" that detailed the several appointments I'd need to get all the work done. Out of the kindness of his heart, Dr. M generously offered me a steep discount, which brought his hygienist close to tears. I am a blessed, blessed girl. The bill was still quite steep, but I was so incredibly grateful for his care. His whole staff is absolutely wonderful and nicer than people should ever be. ;)

It gets better.

His office called me a bit later to schedule the first appointment. We set a date, and then the receptionist casually said, "Oh, the doctor wanted me to let you know that he's decided to do all your work... for free."

I was speechless. I stammered for a few minutes, not sure I'd understood correctly, and she went on, "He got the staff together and told us how much you've been through. He didn't want this to be another burden on you and this is just what we want to do."

Sometimes, "thank you" seems like it falls so far short...

My first appointment involved a bit of drama. People with EDS are instructed to tell their doctors and dentists that they may be insensitive to many pain medicines, including the stuff they use for numbing your mouth for dental procedures. I warned the sweet dentist, Dr. Z, that this might be the case for me, but since I'd NEVER had a cavity in my life before, I wasn't really sure. Anyways, she began numbing me up, and periodically would ask if I could still feel what she was doing. Yup, I could still feel everything. After her assistant left to get another syringe of numbing medicine (we'd used up the whole tube to no avail), she said, "Boy, you sure weren't kidding about being insensitive to medicine!"

Finally, they maxed out on the amount of novocaine an adult can have, and I still could feel everything on the lower jaw (where they wanted to work), but my upper jaw was numb, so they decided to work there.

As they worked on me, I felt sort of weird, and my eyes fell out of focus. I figured it was just that bright light shining in my eyes, and the two people working in my mouth, so I just relaxed and let my eyes close. When they finished, I stood up to leave.... and the next thing I knew, I was in a reclining position in the dentist chair with two concerned hygienists hovering over me offering me apple juice and putting cold wet washcloths on my sweaty forehead. I was so embarrassed... I stayed so lightheaded and loopy that eventually one of the nice hygienists had to drive me home!

Of course, after all that... my mouth finally DID go numb after I got home, and stayed numb for several hours. I looked like a stroke victim! I had to go to a meet & greet event with healthcare students, and I'm sure that they were all mentally diagnosing me with Bell's Palsy. The sweet dentist called me that night to make sure I was recovered after dramatically almost passing out in his office.

Now we know... Hannah needs LOTS of novocaine, and it WILL eventually kick in, we just have to give it a LOT more time. And, we also know... Hannah needs to eat a good breakfast before getting dental work done! I had been feeling rather sick that morning and just had a glass of juice before going to the dentist. Apparently the numbing medicine plus low blood sugar plus my "special" metabolism were a BAD combination!

I can't even express how thankful I am for the kind care and incredible generosity of my amazing dentists, Dr. M and Dr. Z, and their entire staff (all of whom now knows me after the almost-passing-out incident... how embarrassing!). I told them I feel like a spoiled grandchild every time I walk in!

Hannah ;)