Search This Blog


Apr 2, 2014

Another New Drug; More Guinea Pigging for Me

It shouldn't come as a surprise to me, yet there I sat in shock. "I've been doing so well." Yes, I have these strange new symptoms, but they're nothing compared to where I was 12 months ago. So, why not keep my magic cocktail longer?

My newest symptom is "vibration" in my lower legs. I have had pain there for years now, but this vibration has been here for just a couple of months. It's really only bad at night and in the morning. Guess what! That's a "rare" side-effect of Dapsone. That's just great. Rare isn't in in my daily speech enough, apparently.

I'm also "going through my blood" rather quickly. I had to clarification on this one. Because my H&H are low (Hematocrit and Hemoglobin) and my Reticulocytes are high, the life cycle of my red blood cells are shorter than they should be. H&H are matured red blood cells. My numbers are low, so they're "dying-off" too soon. Reticulocytes are new red blood cells. I have a lot of them. So, I have more child than adult red blood cells. (We all know that being outnumbered by children is dangerous.)

It's not all bad news. 

I have an alternative. The question is, "Will this alternative work for me?" It's been tested at Johns Hopkins with significant results, which we can't see because the study only recently completed. It's not been published yet. But, I have grown to trust my doctor there more. If he thinks it's worth a try, I will.

I'm ditching Dapsone and CellCept (soon, but not until my insurance approves the new drug). Yea! The other good news...I'll be taking 9 pills less per day! Woohoo! (You'd better be woohooing with me.)

The bad's a shot! Orencia is a shot! I went into panic mode. My experience with Anakinra (Feb. 2013) was so unpleasant. The shots hurt. I cried more and more every night before and after Superman gave me the injections. To make things worse, each shot produced greater and greater injection site reactions. Anakinra was a month of torture. The only good thing I can say about Anakinra was that it had produced some kind of results because I could wear normal shoes for the first time in more than a year and I could climb stairs again with out pain. Those were two huge "steps" for me. The effects lasted through Feb. 2014. Only recently have my knees begun to "crunch" again.

The not so bad's only a weekly shot! Whew! A weekly shot. I can do that. Well, someone can do that to me. My sweet nurse is so positive. "Oh, it's easy! They made the auto-injectors so simple!" Uh huh. You don't know me at all. Superman will be injecting me weekly. When he's not available, I will be driving to my primary care doctor. I cannot give myself a shot.

I'm told Orencia has far fewer risks and side-effects than CellCept, Dapsone and Anakinra. Wow! I am even a bit excited! I'm not stupid, though. How many trial and error drugs are on my list? It's still scary for me to change. I finally have felt as close to normal as I have since before this disease put its grips on me. It's sad to think I could lose that...again.

For now, I sit and wait for what I hope will become my new magic potion.

Mar 4, 2014

"What if Your Healing Comes Through Tears?"

I'd love to recap last week's Rare Disease events as part of Rare Disease Legislative Advocacy and Rare Disease Day, but there's a lot. I've got a lot of writing, handwriting and typing, to do as well as connections to make by email and phone with all the wonderful people I met last week. It was inspiring, humbling, exhausting, and the most meaningful week of my life (outside of my wedding to Superman, of course).
What's the point and connection with the post title, video and song? 
I've been listening to this song for a long time now. And, its sentiment has been in my head for about a year and a half now. After my last major breakout, I wasn't sure this disease would ever go away and worried that my state after recovering from it was going to be the best I could expect, which wasn't great. I remember hearing stories throughout my life of people, good people and Christians, who prayed for healing. It rarely happened with the really sick.
I remember one particular woman who refused treatment because she believed she would be healed by God and prayer. I absolutely believe that's possible. God can do anything. That woman died just a few years after diagnosis with something that is quite common and has a high survival rate. My issue with praying for healing like this is:
  1. What we as humans, especially as Christians, define as "healing" is not the same as God's healing. Through the process of deterioration, as everything in this world does, perhaps God using the lack of physical healing to provide a spiritual healing. Yes, many Christians know this. However, we cannot pretend that we aren't asking for physical healing too. But, is physical healing what God has planned for us? We cannot pretend to know what His purpose is. So, as humans, we pray for a physical healing that we don't know is in store for us. And, as humans, when we pray for physical healing, aren't we setting ourselves up for disappointment and doubt? We know that God is faithful to us and doesn't disappoint, but as humans we place our faith in other things and people besides just God. For example, we place faith and hope in our own timeframe and our own requests and not always in His time and plan for us.
  2. As part of our spiritual healing and regardless of our physical health state, shouldn't we be praying for spiritual healing alone? God knows we don't like or want physical pain and suffering and that we want is physical healing. It's not what we want but what we need that we should be praying for, like, "Whatever Your plan is for me, whatever it is I'm supposed to be learning and doing because of this [tragedy, illness, hardship], please reveal it to me and make me a steward of Your mission through this [tragedy, illness, hardship]." In other words, "Please help me to know what it is I'm supposed to learn from this and help me use it for good and for Your good."
My real fear is that when non-christians see and hear us praying for our physical healing, then seeing us decline or die, they don't know or understand. I fear the non-believer's response would be, "See, there's no God. Why would God do this to you and let you suffer?" Or, "Where's your God now?" For us to try to explain at this point would be futile. They're already witnessing what they see as true. But, if they see and hear us praying for a purpose from our [tragedy, illness, hardship], that won't require explanation. And, it won't matter if we never physically heal and/or die from our [tragedy, illness, hardship]. They'll see that we've tried to do something for God and something great, no in spite of, but because of our [tragedy, illness, hardship]. That earns great respect, even and especially from non-Christians. Wouldn't this be a better testament of faith?
I share this because during Rare Disease Week, I met so many people fighting to make a difference in so many different ways in the lives of others--more so than their own. These people have learned from their experiences and instead of just moving along in routine, daily life, they're forever changed and motivated to help others. They've turned devastation into inspiration!
Therefore, this song and its message is perfect for anyone facing [tragedy, illness, hardship].

Let it be your "theme song".


Music video by Laura Story performing Blessings. (C) 2011 Laura StoryLyrics posted below video

We pray for blessings, we pray for peace.
Comfort for family, protection while we sleep.
We pray for healing, prosperity.
We pray for Your mighty hand to ease our suffering.
All the while, You hear each spoken need.
Your love is too way too much to give us lesser things.
Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You're near?
What if trials of this night, are Your mercies in disguise?
We pray for wisdom, Your voice to hear.
We cry in anger when we cannot feel You near.
We doubt Your goodness, we doubt Your love.
As if every promise from Your word is not enough.
All, the while, You hear each desperate plea.
And long that we'd have faith to believe.
Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You're near?
What if trials of this night, are Your mercies in disguise?
When friends betray us, when darkness seems to win;
We know that pain reminds this heart, that this is not, this is not our home.
It's not our home.
Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You're near?
What if my greatest disappointments, or the aching of this life;
Is a revealing of greater thirst that a world can't satisfy?
And what if trials of this life, the rain, the storms, the hardest nights;
Are Your mercies in disguise?

Feb 12, 2014

How I Would Change America's Healthcare

Or, Why You Shouldn't Vote for Me for President


After years of wondering how the Affordable Care Act (ACA, a.k.a. Obamacare) was going to work and affect the average citizen like me (not me but like me), I've heard nothing but bad news about sky-rocketing premiums, co-pays, and deductibles. Oh, America!
Just as I believe in "you get what you pay for" and "you earn what you work for", I don't understand how our lawmakers can possibly think those of us who are working (and supporting the those who aren't) can bare such a huge burden in such a short period of time. There hasn't been an adjustment period...for anyone. 
Why can't our lawmakers thing beyond their terms? Why can't they think beyond the four years of their terms? Why has the good of the entire country gone by the way-side for a more self-serving, what's good for me only outlook? 
Let me set the record straight before moving along, I'll never run for President--the stress would trigger my symptoms, and I'd be a bloated, red, hot, painful mess. I'd end up getting so angry and annoyed, which would cause me to cry, faint, or both (yes, I cry when I get angry). 
Don't get me wrong. I agree that insurance can get expensive and tricky. I also agree that the cost of healthcare is exorbitant. I agree that our system could use some changing and even serious overhauling. This is where the agreement stops. 
I do not agree with how these changes are implemented. Here's my proposal to all of you in Washington, DC (maybe one of you will have the guts to present it or something like it):

Implement it over time. 

Call it a trickle-down effect, if you will. Why burden the current workforce in such a short period of time? Why not allow anyone over 16 to remain in the system that had existed until 2013? Anyone entering the workforce starting in 2013 would become part of the new system. Then, over time (say 50 years) there would be more people in the new system than the old and enough people would have contributed over an extended amount of time to bear the burden.
Unfortunately, this isn't likely to happen. It's more important that people be remembered for something, good or bad, than nothing. The end of a term is as far into the future as politicians can see. That's unfortunate.

Healthcare Workforce

My other big change/suggestion is regarding the shortage of nurses and doctors. 
First, I'd address the nursing shortage while also improving the quality of future doctors. How? Nursing school and med school would become the same but geared more towards nursing. Anyone wishing to become a medical doctor must go through the same schooling as nurses and work a minimum of 1500 clinical hours as a nurse on a med-surge floor, in a family clinic, urgent care, or nursing home before being eligible to apply to medical school as to be a doctor. 
This would quickly add a lot more desirable nurses to the field. It will also provide an opportunity for those nurses who realize they should move on to more advanced practice to be more likely to become doctors. The students who would have ended up failing from medical school would still have a career in nursing and probably better suited for nursing than any other Joe Blow on the street--which is where we seem to be grabbing a lot of new nurses. There are lots of great nurses. However, because of the shortage of nurses in general, we've provided all kinds of incentives and opportunities for people to become nurses who, let's be honest, really shouldn't be poking around our bodies with medications or holding our lives in their hands. 
This would also make better doctors--more self-sufficient and compassionate. If all doctors are required to be nurses to learn the basics of nursing, we'll have better doctors with greater understanding for patients as well as their fellow nurses.
This would also eliminate a large number of programs that would become unnecessary. For example, this education track might eliminate the designation for nurse practitioner. Why would nurses need to be NPs if it's just as easy and time-consuming to follow the medical school track. All nurses and doctors would start with the same education and even continue with similar tracks leaving little differences between nurses and doctors other than doctors continued along that educational track.

In Summary...

These are my thoughts. They've been swirling in my mind for months. I realize I sound quite simple-minded. Sometimes, simple is the best solution! Complexity can add confusion, increase costs, and decrease participation--hence, we have an extreme lack of voters exercising their rights during elections. We also have a lot of family doctors regretting not specializing and risking more time and education or changing professionals altogether due to the overwhelming costs and burden of ACA, while many NPs regret not going to medical school when it's quite similar yet not sufficient enough for an MD.
A Compassionate American