Rare Disease Day

Happy Rare Disease Day!

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Year End Blog Update

I thought I would sit down and try to write an update on some things that have been happening over the last couple of months.

I did get some great news regarding my heart test that I had Thanksgiving week.  My results came back normal, a definite improvement from my test from last year!  Praise the Lord!  That is definitely a huge thing to be thankful for and definitely a relief.  It also means that the tacrolimus did do a lot of good, so at least I didn't tough out the side effects for nothing!  I only wish I was able to tolerate it better, since we know it did help combat the disease.

The unfortunate news is that my body continues to remind me that though one battle is won for now with the heart test, it's still at war with me.  I'm still weaker than I wish I was, and my skin started flaring so badly a few weeks before Christmas I was having a hard time opening my eyes.  My "heliotrope rash" was flaring... basically the skin from my eyelashes to my eyebrows becomes inflamed, sore, and swollen.  After a lot of thought, something had to give and the only thing that really seems to combat the skin is my nemesis, prednisone.  Anyone who has ever had to be on prednisone for a lengthy period of time, knows that while it can be greatly helpful, it also can cause some major problems and major discomfort, so anytime I take it, it is not a decision I make lightly or without hesitation.  My doctors have prescribed pred for me on a need to have basis, so I decided it was worth a try since family was coming the next week, and well, I'd like to be able to actually open up my eyes and see them.  Initially, I was going to try a quick taper, but after a few days of trying that I ended up staying on 20mg for the time being.  Currently, I'm handling the side effects fairly well, although I do fear it will catch up with me eventually and this is not a good long-term solution for various reasons.  As of right now though, it has helped quiet the skin, it's not so painful and I don't so much like a red raccoon, so that part is good at least!

Christmas went very well and it was wonderful to see family that I've not seen in awhile.   We celebrated with my mom's family on the 21 and 22, my dad's family on the 23rd, and then on Christmas Eve and Christmas it was just my parents and my sister and brother in law, and of course the star of the show, London! :)  Oh, and we must not forget all the kitties.  I was able to participate at least in part on all days, and out of the five days, I felt fairly decent days for three of them.  Which is VERY good for me.

On New Year's Day, one of my best friends and favorite people will be here so I'm definitely looking forward to that.  Kati is in many ways the little sister I never had.  So that will be fun!!! :)

Then, after that, reality will set in again and it will be time to make some medication changes.  As I said earlier, prednisone is not a good long term solution; plus I'm only on a mid-range dose; and it didn't put it into remission the first time so it's doubtful it would do that this time, especially on that dosage.  My doctor called a few days before Christmas and isn't really sure what to do, but has prescribed cyclosporin.  The bad news is this drug is usually difficult to tolerate so it's doubtful with my history that I'll be able to tolerate it very well.  I've got to say, I feel pretty discouraged most of the time regarding my treatment options.  I have come to expect side effects; my problem lies that up to this point, everything I have tried I have either been allergic to, or it has had side effects that have been absolutely crippling.  It gets to a point where you feel pretty defeated.  Because the disease HAS affected my heart, it is imperative that I find something to calm the disease.  Plus, the misery the disease causing on a day to to day basis is not pleasant either.

The only other thing that may be worth a try is that during researching cyclosporin which is a lot like tacrolimus in the way it works, I found that both can cause a decrease in magnesium.  The symptoms of low magnesium--fatigue, weakness, pain--all the reasons I ended up ceasing the tacrolimus because it was becoming overwhelming.  It's a long shot that this is the problem, but it may be worth trying to add magnesium and take tacrolimus again.  Which I'll do first, I do not know, and I haven't had a chance to run this past my doctor (although she'd probably just say to give it a try and see--it's the only way we really know.  I'm basically a walking medical experiment.)

So that is basically, in a nutshell, what's been going on in the last couple months.  I appreciate your thoughts, support, and prayers in the new year.  Please be praying that I find just the right combination of treatment for me and that this new year will bring better health.

I cannot believe that as I write this, it is the last day of 2012!!! It seems like this year has flown by.  As I look back on the last year, I am very, very thankful to say that I am doing better than I was a year ago.  I still have so far to go, but comparatively I am better.  It's small steps, but at least they are in a forward direction!

The highlights of 2012 had to be the two additions to our family.  One was furry; the other was not.  In the spring, I adopted a little Maine Coon kitten that has already grown into a 16 pound Maine Coon Cat.  I named him Toby Emmanuel because Toby means "God is Good" and Emmanuel means "God is with us."  So Toby Emmanuel literally means, "God is good, God is with us."  I named him this for a reason, because I knew I would have bad days where my faith was running low; and I would see him everyday and every time I said his name I remember the meaning of it and I would be reminded to hold onto my faith.  I'm very glad I put so much thought into his name, and he is the happiest little creature so it really fits him too.

Our other addition is my sweet niece.  I cannot believe it has already been a year since my sister and brother in law came home for Christmas, acting all suspicious just to announce that they were expecting!  Seven and a half months later and six weeks earlier that expected, London was here. I'm so thankful that God protected both my sister and my niece through an early delivery and that they are both doing wonderfully now.  You would have no idea now London was a preemie!  I'm so thankful to be an aunt; it's a gift to be an aunt.  I hope that I can teach London a lot as she grows up.  I may not always be strong enough to play with her the way I'd like to, but I'll love her with all my heart.  

Happy New Year's to Everyone!  May God bless you with a great 2013!  

I wish I knew their secret...

So often, sleep alludes me.  I need rest, but it's not always easy to get.

I really wish my cats could teach me their sleeping secrets.  Here's some pictures just for laughs!

Blue :(

Hello to all my blogger friends.  Thanks again for taking your time to read my blog.

One of the hardest things about chronic illness is keeping a positive attitude.  Usually, I feel like I do a pretty good job of it.  If I can find a way to laugh about something that should make me cry, I do.  I've learned to be happy even while being in immense pain.  I try to find hope even when all seems hopeless.  So when I feel down, I try pick myself up.  Most of the time I can...

But the last few days, I can't help it.  I'm just blue.  I'm living in the a state of melancholy.  I'm trying very hard to shake it, but right now, I feel like Eeyore, with a constant cloud over my head.

It's been a rough week.  I've been dealing with kidney stones (again, ugh!) and I think I also have some sort of bug making me feel more rundown, more achy, which is bound to make me feel more emotional.  JDMwise, though my strength has stayed about the same--not better, but not worse--my skin is flaring, and my stomach is not happy with the illness right now.

The worst thing about chronic illness is that it's always there.  It's that constant companion that just doesn't want to leave.  I've tried multiple things to get rid of it; yet it's still there.  I try to stay strong, stay positive, but at times the burden just feel so heavy.  Sometimes a good cry is warranted.

One thing I think that has me down, is just the many personal failures I feel I face each day.  Compared to last year, I am doing so much better and I'm very, very thankful for that.  Yet, there are still so many things I try to do on my own and fail at on a daily basis.  Putting on my own clothes.  Getting off of the couch on my own.  Getting off of the toilet (even with a riser) on my own.  So many little things I want to do, but can't.  I try, try, try, but I fail.  These are tasks that most would call simple; yet they are huge obstacles for me right now. Though I'm so thankful I have a mom who is willing to help me with the things I cannot do myself right now, and I'm thankful for my aunt Lisa and Jaclyn for coming over and helping me with some of those things when mom needs to run errands, I just really miss being able to do those tasks on my own.  I dearly miss my independence, my ability to take care of my basic needs on my own.  These abilities have been gone for well over a year now.  I know it's not my fault, that I didn't ask for this and that I'm fighting with all that it is in me; but it still hurts.  It's a constant reminder of how weak I am and there are days it's really hard to keep my head up.

Another thing is that my birthday is a week from tomorrow.  I remember when I was a kid,  I just could not understand why anyone would be sad about a birthday!  Now, I kind of get it.  It's not that I'm upset about getting older.  That age thing really doesn't bother me.  It's just this is not the life I think anyone wants at 28.  There are so many things I desire for my life; and I wonder if they are even remote possibilities.  I know that thinking about the future and worrying about it does me absolutely no good; I know that if this is the path God has me on there is a reason for it; but the lost dreams and disappointments sting sometimes.  I'm just so tired of this stupid illness stealing so many things from me.

I will get past this eventually.  I debated even posting this, as I really don't want this to seem like I'm complaining.  I know, even in the midst of the storm, I am still so abundantly blessed, that I still have so much to be thankful for.  However, this blog is about awareness, and I realize that no one can truly relate to the war I go through on a daily basis if I don't talk about my weaker days, my tougher days.  Vulnerability is still something I'm working on.  I'm still trying to find that balance of what is being too open and what is not being open enough.  I'm still figuring out the balance between making people aware without complaining.  The main reason I'm posting this is so that others going through something similar will know, yes I have days I'm discouraged too.  I also feel like Christ really can't be shown through my weaknesses if I don't humble myself enough to show them.

If you are reading this, just please pray for me.  Not just my for my physical health, but also for my emotional, mental, and spiritual health.  This battle is more than just physical.  These disease has taken so much from me; and I am doing my best to remind myself that it cannot take my joy, my peace, or my faith.  This week has just been rougher than normal emotionally.

I guess I should end this with a mini update about treatment plans, although there is not much to report.  I'm still in medication limbo, waiting on the doctor to get back to me.  I guess if I don't hear from her soon, I'll start calling and bugging her until we hear back.  I have heard others have positive results with a couple of the options, so I hope and pray that God will lead me to the best possible option for me.  At this point, I would be so grateful for any relief.  

Thanks so much for reading, I'm signing off for now.  I think I'll go do something that makes me happy, like spend some time with Ariella and Toby (pictured below).

My verse for today, to remind me there is purpose in suffering:

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.-Romans 5:1-5