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Jun 6, 2014

Lessons Learned

It wasn't the first time, but it was the last time I ever want to say the word "hives" when describing my disease to someone. That even goes for conversations where I've mentioned every single symptom and say "hives" last. That's it. No more! (I'm pretty sure everyone with urticarial vasculitis and/or autoimmune urticaria knows exactly how this conversation went.)

I also learned last month to stop engaging with people in line at the pharmacy. I know they're just trying to be helpful, but I'm the patient. I know my disease. I know my body. That's true even if you do happen to have the same disease. So, to the lady with type 2 diabetes who tried to tell me I was being too particular about my medications and that they're all the same (basically telling me to shut up and move on so she can talk to the pharmacist next), I should have just smiled and nodded. Instead, after discussing my concern about the brand inconsistencies of one of my medications with the pharmacist, I told her, "Thank you. But, it does matter." She replied, "No, they're all the same. Trust me. I take 8 pills a day." The only good thing I can say about the rest of the conversation is that I did not "say" anything in response. Instead, I turned and glared at her with my face turning red while I had an fantasy grudge match with her. I so badly wanted to reply, "8 pills? That's all you take? Give me call when you're taking 20. I might listen to you then." I wish I had said that on one hand. On the other, it wouldn't have done a bit of good, and I'd have looked like a complete jerk.

This all leads into a new acceptance for me...another pill that's hard to swallow. "Hello. My name is Rhonda, and I'm sensitive." I haven't wanted to admit this for a very, very long time. Perhaps, years ago, I truly wasn't. Now, I have to accept that anything anyone says to me that could possibly be related to my disease is a teetering boulder on a needle.

I don't know what's the right the to ever say to me. To my doctors and nurses, all I can say is, "Please, please believe me without having to see me in all my painful and ugly breakout glory." I'm tired. I'm tired of fighting. I'm tired of arguing. I'm tired of speaking medical talk with doctors while they roll their eyes at my "lay" research and even at my verbal recount of what my other doctors have said. Just believe me.

I write all of this while I am trying to mentally prepare myself for yet another appointment. I've had high hopes for this appointment. I had high hopes for my last one. I naively went to a new doctor thinking he was already going along with the program and that it was just a matter of debating the next new medication. I wasn't prepared as I so clearly should always be. I didn't expect to have to recount my timeline and symptoms. I wasn't expecting to recount all the medication failures. I wasn't expecting to have to explain the theories behind my diagnosis. I left the office composed. By the time I got to my car, the tears flowed. The good news that did eventually come from that appointment is that the new doc spoke to my Johns Hopkins doc and all is well again in the kingdom. (That is until the next bump in this road sends me reeling and into a panic attack.)

3 lessons...
1. Never mention the word "hives" when educating anyone about my disease.
2. Smile, nod, then ignore "helpful" advice from strangers.
3. Be a Boyscout. Or, always be prepared with my complete history no matter what. ALWAYS.

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 news...it'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 news...it'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".

Blessings

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?