Monday, May 25, 2009

frustrated

so it has been 4 weeks since mark was in the hospital.... a LONG 4 weeks. we were talking this weekend about the process of those 4 weeks. the ups the downs, the good the bad, the happy the sad....and we determined we were both left just feeling frustrated.
we feel so blessed by so many people and by a god that has carried us through this journey. yet we are frustrated. we were told it will probably take 2 years for mark to feel better...that sounded bad at the beginning, but now that we are 4 weeks in...it sounds worse. we have gotten a taste to what life could look like with this disease....it sucks!! we were hoping that this far into it mark would be feeling better. but he is not..he is having a ton of not so fun side affects in addition to still feeling like crap. it is frustrating!
we go on thurs to national jewish hospital to see a specialist. they plan on reviewing all his tests and charts and hopefully giving us more information.there is a sarcoid research team there that they are hoping to get mark in.
this journey is a lonely one. one where you are told you have a new addition to the family... sarcoidosis. a word we had never heard before. a word that most people around us have never heard of. then you are handed a lapful of the unknown. of what this disease will look like for mark. not what it looks like for others...but for him. you read stories good and bad of others with sarcoid, and wonder what your journey will look like.
i was reading a story about bernie mac who died from a complication of sarcoid last year. in the article is summed up alot of what mark and i have been feeling.
"Emotionally, the uncertainty associated with sarcoidosis—never knowing when you're going to have a flare-up or how serious it will be—is one of the hardest parts of dealing with this disease, patients say. And then, there's the loneliness of having this disease with the funny name that no one knows about. You feel very isolated, One day, you might be racing around the house and the next day you might not be able to even get out of bed"
so there it is folks... please pray for us. pray for mark to start feeling some better. pray for answers, pray for strength, just pray :)
we love you all!

6 comments:

Prokosch Family said...

All I can say is I think to feel frustrated with what you guys have been handed is MORE than normal and MORE than the way I think anyone else would feel if dropped into your shoes today! I am praying for Mark to feel better and I am praying for strength for you both!!

elizabeth said...

I know how hard this is. I am glad you have been able to articulate the sense of anxiety and isolation that this brings. This is an important realization.

My whole life (other than a few years in jr high) has had various health problems. It is hard. I am not in a position where I have to be in bed one day/up the next but do have energy-level issues that create a constant sense of uncertianty to what I can accomplish and what the day will be like. So I understand the sense that no one else understands and the sense of instability, and the anxiety and fear that comes with this.

The more you come into this journey, the more you may find people with burdens. There are actually a lot of us. I know, unless something changes, that I will have some level of sickness for the rest of my life. And as I age, things may get worse. The concept of what is normal will change, as you are entering into something that, for a while, is a "new normal."

It is hard. The one promise I keep hearing in all of this is that the Lord knows and He will not abandon and He will go with us through every valley.

You are in my prayers.

tim and kristi said...

we will continue to pray. i am praying thursday brings a sense of hope and more answers than questions.

LauraAnne said...

Pray for you daily, my dear. And will continue to do so as you get through this; cause you will.

mary velier said...

Praying for you and Mark especially Thursday that they will be able to answer more questions you may have. Keep up your faith, God is hearing your prayers and He will answer them in His time. Love the Velier's

Molly at Blink Photographic said...

just re-reading some of your posts and tearingup all over again. i'm so glad you guys have one another.
oxoxo
molly and the boys.