Sunday, August 26, 2012

Impossibly Stuck, Divinely Blessed

The Blame Game
I've continued to feel pretty crummy: completely exhausted, sleeping 15+ hours/day, unable to shower or leave the house most days. My joints and belly are causing pain, and I'm running fevers. The last week or so has been the latest round of visits to all my specialists. I hoped that we could sort out what was going on and help me to get a little more functional! First, I went to the Endo Doc, detailed in the last post. She said, "You look great from an adrenal standpoint. You are on more than enough steroids. You feel bad because your arthritis and POTS are out of control."

Next, I went to the Rheumatologist. JP Dr wanted to add in Cimzia or a different immunosuppressant. Since I are not sure that the arthritis is the cause of the fatigue and malaise, I thought it would be unwise to add another med into the mix at the moment. So, JP Dr said, "Well, it's partly arthritis, but mostly your adrenal insufficiency is out of control. You aren't on enough steroids. And since you're having such bad problems with fatigue, let's temporarily lower your methotrexate levels." This may cause my joints to flare more, but should help with the fatigue IF it's medication side-effect related.   Her assessment of the adrenal stuff was exactly the opposite of what Endo Doc had said... but I went ahead and increased my steroids a bit.

Note: this is NOT a picture of my doctor
Then I went to the neurologist, the POTS doctor, who I am convinced looks like a private investigator or something - he has this deep gaze and subtle smile. ;) He seems a bit out of place testing cranial nerves and charting; it's easier for me to picture him quietly tailing potential criminals. Dr. Spy asked me if I was following the numerous lifestyle modifications he suggested. I am, and I've also come off of a few meds that can worsen POTS... yet my fatigue, salt craving and heart racing issues are even worse. Dr. Spy said, "We can't get your POTS under any better control until you have completed my 3 month intensive workout program (50 minutes/day of cardio). And you are too sick from your POTS and other issues to start the program. So start off with doing some leg lifts in bed and work up to 50 minutes a day on cardio machines." I am not really sure of how one gets from being unable to get out of bed to completing his program... and he didn't seem to have many practical tips on how to accomplish this, either. He didn't even have me schedule a follow-up appointment, I suppose because there's really nothing else he can do.

So basically... I feel stuck in this health situation, and I don't really see a way out. I am very sick, and it seems that no one knows exactly what to make of it or how to help me. I go to my doctor appointments, take my medication, try to follow their recommendations about lifestyle modifications... and yet, I am not "better." Both Endo Doc and Dr. Spy spent the appointment telling me that they cannot really help me, and explaining why it's one of my other specialist's job to manage my diseases better. And JP Dr spent the appointment trying to manage my endocrine and autonomic nervous system meds and labs.

I did increase my steroids, per JP Dr's recommendation, and, for the first time since I came off the prednisone, I feel slightly more awake and "with it."So hopefully that will help me to be able to get up and around a little more. I am still spending more time asleep than awake, and more time in bed than out during the hours that I am awake. And this weekend, I did feel better on the decreased dose of methotrexate - less poison in the body = less nausea/migraine/fatigue/confusion.

It bothers me that there's no comma after "hard"
My day-to-day reality is hard. My illness is not fun. Even my doctors are at a loss to explain what is going on inside my body, or they may be able to explain what's wrong, but can't really "fix" it. It's something I never would have chosen, but God continually uses it to teach me about Himself. He uses it to change my "head knowledge" into "heart knowledge." For example, I know and believe that God saved my soul from death when I put my faith in Him, but through my illness, I watched Him save my body as well. Two years ago, I was hallucinating in terrible pain in the ICU after surgery to remove my J pouch. God brought me through those horrifically rough days, and He showed me a facet of His salvation in a tangible way that I wouldn't have experienced without my illness.

And I've always known that God promises to provide for my needs, and I know that there are many people who care about me and my family. But were it not for my illness, I never would have seen God dramatically provide for my medical bills nor witnessed the incredible outpouring of support from dozens of people (check out the Help4Hannah website if you'd like to see for yourself).

I don't know if I would have learned these lessons so vividly without the difficulties that God has brought into my life. Now when I speak of God's salvation and God's provision, they aren't simply theoretical attributes or far-off promises anymore. I, like doubting Thomas, have gotten to see first-hand that these things are real. Although you certainly DON'T need to experience miracles to believe that God's promises are true, the wonderful things that God has done in my life serve to deepen my faith and trust in Him. My love and thankfulness for Him are also deepened as I experience God's goodness in new ways every day.

So... if the price for seeing God's goodness "up close and personal" is that I have to experience feeling "stuck," facing a challenging day-to-day life here on earth... it's worth it. As Paul puts it in II Corinthians 4:17, "Momentary, light affliction is producing in us a weight of glory far beyond all comparison." I just have to remind myself that I am divinely blessed!

Hannah ;)

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