Memes

A few funny memes only my fellow crohnies will get :)

Almost 2 years post transplant

Just wanted to share some photos of me while im almost 2 years post transplant! :)

THIS is normal

I finally read The Fault In Our Stars. And as I did, I found myself relating to her often. It's much like she said in the book about her pain. When you're a professional sick person, you read it and understand and agree almost instantaneously.  When the pain is at its worse, you don't continue to cry or scream out. That only makes it worse. You rate it a 9, not a 10, because you know one day it will get worse. You put your mind on other things, you're courteous and polite and say thank you a lot and smile a lot because if you can do anything to take away from the pain, or at least not add to it, you do just that. You accept your defeat. You seek help from the doctors and you do what you can to not make it worse, to help the only way you know how. Doctors see that as having less pain, needing less assistance. They see it as strength by having less pain. But in fact it's quite the opposite.  It's more pain. And while it is strength, it is strength in bearing and emotionally coping with the physical overwhelming, unbelievable pain. And oh trust me, it is MORE pain.

I've spent more than enough days of my life in hospitals: counting ceiling tiles, discovering the way the plastic strips are perfectly intertwined to hold the tiles up, passing in and out of awareness, a lot of nurses,  a lot of thank yous, a lot of being poked and prodded. That doesn't scare me. It scares me more to think I can't remember my life before this. Of course I have memories, but I can't remember what normal feels like. THIS is normal. That scares me. But the process itself is, well, just...normal.

So I go about my "normal" life. I suppose to someone else, it may seem odd or interesting, but I've honestly lost the vision in even seeing that. It's quite boring and uneventful. One day, you're incredibly ill and preparing to die, and the next you're going to weekly doctor visits, pumping your body with meds, and unfortunately used to the pain and abnormalities of your daily life that you feel like you're really doing nothing. You didn't die. You're alive, but still too sick to feel alive and not exactly used to not dying. Sounds incredibly insane,  I know. But not to me. I think that's where I am. Still sick, alive, and not quite used to not dying yet. Will "normal" EVER feel the same? I find a lot of doubt in that. But I believe I'm alive still to serve a great purpose for God though, so I actually really hope I'm right about that. Maybe "normal" for me was supposed to change forever. Maybe it already has. And maybe I've not only come to get used to the idea,  but also to expect it. THIS is normal.

A little down

I'm not going to lie. I'm a little down today. I slept straight through my GI appointment so I didn't get to see them. However I'm going to see the GI in Chicago Tuesday so I will know more then hopefully.

I'm a little bugged by the fact it has spread. But I'm more frustrated at the multiple comments on how the transplant didn't work. IT WORKED! My large intestine is still doing great. It's been 2 years of inactive Crohn's.  Since, 2 years ago I could barely walk and lived in the hospital,  I'd say that's pretty awesome. And where my Crohn's was so active is now inactive so IT WORKED.  And people keep saying, "but I thought it cured you, I thought the crohn's was gone". Unfortunately,  as of yet, there is no cure. And just like any other incurable disease, remission can only be temporary and even if your active locations stay inactive, crohn's is known to spread. I came to terms with that a long time ago. The day I was diagnosed,  I knew this would be forever. I never thought it would have gotten as bad as it did, but that's life! And God let me go through this for a reason.  And like my family has said, at least this time it's the lesser of evils and I can take meds again and this time they have a chance to work. And i caught it early so its ok. Phew! That needed to get out! :)

I want to thank my wonderful Mom, grandmother, sister, fiance and good crohnie Aly for being so supportive! You guys get it and I appreciate that more than you know! It's my body, Ive got to live with it and all of your love and support and encouragement is what gets me through! I love you!!

Simple things

When you're sick, you gain a new perspective.  And I love it. the simple things become the greatest blessings!

Another day, another hospital

I went in for my iron iv infusion and ended up in the er. They wouldnt give me my infusion because of my abdominal pain and bronchitis.  Like all of us with crohn's, we know it acts up when we get sick on any way. Little did I know, my lungs are in good shape. My small intestine is not.

My Crohn's has always been in my large intestine,  never entering my small intestine whatsoever.  A CT scan a few months ago indicated some inflammation in my ileum.  However, it was not mentioned in the endoscopy and colonoscopy I had immediately following so I thought no more of it. After my ct scan tonight,  it showed it has worsened.  In other words, theyre suspecting my Crohn's has spread. Fortunately,  we are catching it in time I think. The doctor looked worried, but he's just the ER doctor, not my GI.  But I do have to immediately see my GI for a course of treatment.  I dont know what it will be yet.

I went in for iron, I get more inflammation lol such is my life! 

Im honestly not worried it's anything bad, and my Crohn's is actually still in remission but with my past, there's a bit of anxiety that it's more or going to be more. But it's in God's hands now and all i can do is get my game plan and go!

Say a prayer and if each of you do, I know its going to be A okay! :)

Have a wonderful day world!

Keeping you posted!

Jenn

Only a week a way from my 2nd...second birthday

Im almost at my 2 year anniversary of my stem cell transplant aka my 2nd second birthday! :)

And....drums roll.....still in remission!! No active Crohns!!! It feels as if I have never had it and while a part of me fears ever being so close to that emotion,  another part of me knows I never will be that close to it...with all the other million problems I get to have...being sick is a way of life lol

They're narrowing it down to a post transplant related lymphocytocis. And basically as long as my symptoms are being controlled,  they won't do anything else. Of course, being controlled and being gone are two different things.  Living with nonstop night sweats gets to be my life. Vomiting up everything I eat that is controlled with really strong meds that make me unable to drive, walk, talk or pay attention...that gets to be my life. Sounds glamorous.

But im engaged now to the same man who spent every day by my side during chemo and has never stopped loving me despite my lovely health problems and all the pills,  and side effects and hospital visits and doctors appointments and random plan cancellations from being sick. He loves me through it and for that I am forever grateful. I pray every day he will be able to continue to understand and deal well with the adjustments made to our lives and our relationship that others might not have to make. And I thank God for placing such a selfless heart in my life to love me. <3

I go to the hospital tomorrow for iron infusions,  while I still have bronchitis that im suspecting as followed its usual course straight on in to pneumonia.  So maybe seeing a doctor about that too. I will keep you posted!! Seriously going to start writing more! It's a lot like therapy...very free therapy ;)