Answered prayers

It has been a rough month, but the past few days have truly felt so nice! With 3 treatments per week, over the past 2 weeks, we've caught up to the symptoms again. My vision is stable and face is near 100%. What a blessing! After my last post and reaching out for prayers, its awesome how His grace just washed right over me and gave me calm. Hearing from folks who either read this or received an email about this blog, seriously lifted me up. Letting go of the stress about the disease, allowed my body to relax and fight the good fight! I'm eating like a horse again, and trying to put a few pounds back on. Yep, I just typed that ladies. :)

Feeling good, and now, against all medical advice, Lee and I are taking off to Paris, France tomorrow, to visit with his brother and sister-in-law. We've been planning this trip for a while, and are very excited to take a vacation! The timing of course isn't the best, but when will it ever be? I accept these symptoms will begin flaring up during the trip, and so we'll plan to attack again, next week, when we return. Please pray for safe travels and minimal symptoms. By anticipating them, I'm releasing my stress over controlling the symptoms. I'll out-smart myself yet!

Thank you all for your prayers and continued support. Please let me know how I can also lift you up! Email/call/post...just let me know.



merci!

Rachel

One month later

Maybe these symptoms are somehow hormonal. Who knows! As much as I love to test, retest, and test again..removing variables as best I know how, this human lab rat is rather tired of the game call MG. Yes, I'm sharing my frustrations because they are real, and it is healthy to share emotions..all of them.

For the past 2 1/2 weeks, its been all symptoms, all the time. I had one day, maybe 2, where my body was asymptomatic. When the throat and mouth slow for more than a few days, the eyes decide to play along too...and not to be shown up, the eyes cross for a week. Ok, eyes win, and in the spirit of springing forward, the eyes are extending themselves beyond the expected 1 week window. (If you're new to my story, once the vision doubles, it remains so for one calendar week)

I've been going slow, not zipping around. I returned to two treatments a week, body wont maintain stretching the duration. I'm sleeping..well, not right now, but you understand. I'm frustrated.

Whats next...We are attempting to use FFP (Fresh Frozen Plasma) in my pheresis treatments now, because other pheresis patients (with MG and not) have experienced extended periods of time between treatments with FFP. The first attempt was this past Tuesday, the second will be tomorrow. I'm going to ask for 3 treatments next week...we'll see if thats possible.

Also exciting, we've been scheduled to see a Dr in Dallas, who has a great deal of focus on MG and runs trials. I want to be in his trial for a drug called Rituxan! There are several cases we've found (and by 'we' I mean my wonderful Lee), where MuSK positive MG patients (thats my type of MG), have experienced remissions periods through Rituxan treatment. This drug is not yet FDA approved for MG, but has been for other diseases. God willing, we WILL contribute to finding a cure for this very, very, very silly disease.

All of this said, I'm very frustrated to have symptoms last consistently over a 2+ week period. My wonderful friends from Denver are coming into town for the weekend, and bless them, they know whats going on, and just want to hang out. Stress lowered there, no need to be a hostess with the mostest. Lee and I are going to Paris (France, not TX) on 4/1, and I'd rather see one everything...not two.

So, if you're reading this, I think I'm going to ask you to add me to your prayer list. Its time to reach out and stir the pot again...Rachel is ready to see straight...now... I can't promise I'll act straight, but I'll do my best.

Humbly yours Lord.
Rachel

Today is a good day

Ok, I'm done rolling around in my 'woe me' cave...time to crawl out and soak up the sun again.

Monday was rough, and Tuesday much better. Today, I'm aiming for 90%! Pheresis time again, and this time, my pressure and heart rate are normal...well, normal for me. Vision is returning to normal, speech is close to where it should be, and swallowing isn't far behind. Geezz... I have to own this episode, because I didn't respect the disease.

Its so easy to get wrapped up in ourselves and forget that we don't control everything. Maybe I can control which breakfast taco I eat today, but I'm not controlling how that taco nourishes my body or the energy it gives me to deal with pheresis. I can't control MG, that's for certain. Respect the disease. Respect the lack of control, and respect the decisions you DO get to make. I should have rested, I should have taken a second treatment, I should have used the restroom before sitting down in this chair for an hour. :)

Four bottles of Albumin down, 1 to go. So, in this short time, I'll say today is a good day. I'm not laid up in a hospital bed, like those next to me. My vision is primarily single today. The breakfast taco didn't choke me and the orange juice taste good. Today is a good day.

Good and the Bad

I had hoped to start writing out here, to first, provide a single location to update my family and friends on my condition, rather than hound everyone via email so steadily. Secondly, my goal was to eventually provide others with MG, an additional point of reference in their discovery of the disease. Today, I'm working from home, after my treatment this morning. I got a little bit sick.

I was very excited to get to pheresis today, because I'd gone a week without one. I was trying to be a superhero and prove that I could. Mistake. The week prior, and since my last post I believe, we had a week long sales meeting that included many early mornings and late nights. That week, I also only took one treatment that week, and mainly because I was doing so well from treatment to treatment. Well, why do things the right way, when I can make them difficult? Rather than continue the 'good weeks' for a while, I decided timing was good to try for a 1-treatment week. Follow me?

The long story short, I should have rested and taken additional treatments. This last week has been tough, in that my speech was practically gone, my swallow was becoming labored, and to top it off, the double vision sat down to stay a while. Ug! So yes, I was excited for treatment today. I woke up this morning to find my heart racing, and my head a bit dizzy. I contributed this to the conclusion of another 1-week double vision cycle. I'm always a bit woozy on the last day, while things are bouncing between single and double vision. After they hooked me up to the machine today, which by the way was ready to go when I arrived at 8:30, my blood pressure started acting stupid! Technically, the pressure was fine, but my heart rate was insanely high. We checked it again, and it marked high again. I felt fine...and then I didn't.

WHAM! Like hot flash I suppose, because I considered stripping right there, my body ran hot, I broke into a sweat, my color went white(r), and the nurse and I pushed the chair into recline mode pronto. Faint and ready to run, I laid still with my sleeves pushed high, the sweat pearling on my lip, my knees held close to my chest, and then it passed. If that is anything like a menopausal hot flash...it ain't for me!

They pumped so many fluids to me, that I said I really needed to hit the restroom quickly. For fear of my falling down, the nurse walked with me down the hall. Good thing, because I'm sure I would have taken a digger or crawled into an open hospital room for a nap, had I been alone. After my water break, I returned to the chair, reconnected, watched the hear rate stabilize and then the BP started to sink a bit. Oh yay. When the BP drops, I know that anything I've eaten, will soon be exiting the wrong way quickly. Lee met me in the lab to help me down to the car, and took me back to his place to rest, while he works. Dang the BP drop...but thank God for Cola and saltine crackers. I'm sitting up and venting now.

The Good, I made it to treatment today, and will go again on Wednesday. Hopefully, my swallow and speech will return by then, and I can continue eating like I want to. The Bad, that MG is a crazy, stupid disease, and really ticks me off...and I know its ok to say that.

Time to nap again. ;)

We shall see!

Today is Thursday, and I'm tired. We have a large global event at work this week, and our department is responsible for hosting and all the details that come with this. My role is minor, but I'm still tired. Those in charge...they're sleep walking through the pain right now! (heart you!) Anywho...because of the crazy schedule this week, I opted to skip my pheresis treatment tomorrow. I've been having treatments twice a week now, since November. It has only been in the past few weeks that I've noticed my strength improving, between treatments. Yay!

As curious as this disease is, the variables that impact it's progressiveness, are equally as stunning. In the past few weeks, the only things to change for me have been the removal of a catheter and reinstall, tapering off of the Cellcept gradually, and completing the antibiotics. Maybe the infection was hampering my ability to maintain from week to week...who knows.

So, if all maintains as it has and I'm able to make it until Tuesday without issues, then I may be back to a weekly treatment schedule! Yeah baby!! ..its the little things that make me giddy, and encourage me to keep on shining! (my verse - John 11:4)