Tuesday, June 17, 2014

a year and a half post transplant

Im a year and a half out from transplant. My 2 year followup in chicago is scheduled for the first week of august. I hope to hear good news but so far I am crohns symptoms free. However, I am being tested for leukemia, a possible side effect of the transplant. I have a bone marrow biopsy this week. I will let you know the results! And I promise to try harder to update more often!! :) thanks everyone! Stay positive!

Thursday, November 7, 2013

Hey, what's one more doctor to see, right?...

i saw the cardiologist Monday...good news...they don't see a need in doing anything to my pfo. bad news...over the last few years Ive been getting dizzy faint like spells with chest pain. every time i go to the ER they do a chest xray and send me home. obviously to me they weren't looking into it closely enough. Ive went about 15 times in the last few years. you would think they would see that...well at least my cardiologist did. so he's sending me a neurologist to do an MRI on my brain to see what's going on. he thinks they could possible be seizure or mini stroke related. and since i have chronic migraines, the neurologist can help me with that too. who knows, maybe he can help with my insomnia too. So Im going to do some tests to check the oxygen flow and blood flow in my heart and see the neurologist and hopefully then we will know more. ill keep you posted. Pray for good tests results, some relief and for me to continue staying positive. that part gets hard when you just turned 27 a week ago and all of this is my life and it's for life, not goin anywhere lol..i have my bad days just like any other but i know through the power of everyones prayers Im going to keep pushing through and keep my head and my spirits up! God will get me through. He's the reason Im still here after all Ive been through and he's the reason ill keep going! so keep me in mind when you pray! :) Thanks to all my supporters! and please keep my friends Raechel from Michigan and Aly from Louisiana in your prayers as well. they mean the world to me and i know the pain they're suffering from their Crohns and related health problems. Both also have a child and they need to be able to be strong for their little girls. Help them do that by praying for their health and well being! I love you girls!" Crohnies for life! :)

Saturday, October 19, 2013

Update: One Year Followup Coming Up Fast

Sorry it's been so long since I've posted. Of course as you know, things should be slowing down as the process continues. I celebrated my one year 2nd birthday aka the one year mark of the day i received my sister's cells. So here's how I'm doing: I've been great Crohn's wise up until the last few weeks while I'm having a minor flare. Since I'm not on any Crohn's meds, I can't complain but they are keeping me on my transplant meds longer than usual. Since my transplant, I have been diagnosed with Fibromyalgia, Severe Anxiety Disorder, Manic Depressant, Bulimic (ongoing, I'm just finally able to speak out about it), PTSD (from my previous abuser of over 2 years), Asthma, a conginital heart defect called PFO, basically a hole in my heart, Osteopenia,chronic insomnia and migraines (apparently caused by debris getting into my brain from the PFO) and a bunch more. My memory is still off and sometimes I find myself not able to recognize where I am, even in my own home. Sometimes I find it hard to find the right words. That gets very frustrating, but I'm hoping as time goes on it'll wear off. I have made the decision to get my tubes tied this year under the advisement of my gynocologist. It's a thought I'd considered for years but didn't think any doctor would do it because I'm only 26 and have no children. But with my crohn's as bad as it was I'm terrified it will get worse and hurt me or the baby, not a risk I'm willing to take. Also no fybromyalgia meds are approved during pregancy which means I'll be in 10x the amount of pain im in now if not more. Also with osteopenia, carring a baby means broken bones, including in my back and spine. With all the risks involved, I can't imagine bringing a child in this world with a mother under my health condition, not to mention what's hereditary. This is just not an option for me. It's not a decision I WANT to make, it's one I HAVE to make and at 26, I'd consider that a fairly mature decision to make. A lot of weighing the benefits vs the risks and unfortunately the risks are too high. and there's always adoption. I've always wanted to adopt anyway. There are millions of children in this world who need good homes and good parents and one day maybe I can provide that. Well, theres the update. Hope to not keep you waiting so long for the next one!!

Monday, September 9, 2013

Sorry For My Long Break

Hey guys! Wow! I am so so sorry for not updating in forever!

My Crohns is currently flaring but not bad. I go to Chicago for my one year followup in November so we will see more on how thats doing!

It has been confirmed I have fybromyalgia  and its so severe theres not much they can do for me. Im trying muscle relaxers now and they help a little.

Still battling insomnia regularly and am having bad luck with my osteopenia. AlsoIve had a cough since February so Im seeing a pulmonary disease doctor Wednesday..say some prayers! Im also starting with a nee therapist today for my anxiety, eating disorders, self harming, and ptsd issues.

Lets see...guess thats all for now! Will update again this week!!!

Love all my supporters. Thank you and God Bless! I hope each of you is blessed as much as I have been!

Wednesday, April 10, 2013

7 months post transplant already!

Im still having bad daily migraines. Im taking a headache prevention med daily but still getting them at least once a day :( Im calling my PCP tomorrow about it. My cmv lab came back negative finally! So yay for that! I will go off the valcyte now and back on acyclovir. Hemoglobin is still low and Im seeing it..aka bruises galore! My body wrap helped me instantly lose an inch and a half in my waist alone and 2% of my body fat! How cool?! Plus it helped tremendously with my arthritis pains!! Now i just need a solution for my abdomenal cramping..which isn't constant or completely unbearable but it does hurt really bad. Except Im not entirely sure if it's crohns related or female related..very frustrating. I have 5 more body wrap treatments with my next one on Thursday. So maybe those will help with my pain too. They also detox you so that'll be a nice benefit as well. If any of you want more info about them, let me know and ill tell you all i know. I definitely recommend them even if you're not in it to lose fat cells. They work wonders for joint pains and back pains too. They're hot as everything and you sweat alot but its worth it to feel that good after it. I actually felt better than after a full body massage haha My diarrhea is getting better but you know how it is...good days, bad days, worse days. At least now Im having only good and bad days instead of bad and worse days! God is good

Sunday, April 7, 2013

Spring is here and Im dying to get out and enjoy it

Been feeling sick the last few days. Nausea. can barely hold food down. But i think there's just aminor bug going around so... Plus my white count is only 2.1 right now  and my hemoglobin has dropped to 9.9 again. Which isn't too bad for me but still low.Also my hair has stopped growing. I only shave like once every couple of weeks and its still just stubble. Plus my eyelashes are breaking again too. Just like after chemotherapy. Does anyone know what could be happening?? I told my GI, my PCP, Dr Burt and my ob gyn but none of them have checked any of my hormone levels or anything. I mean i don't mind it but it not normal so of course it concerns me. I asked my gyno to check my hormones so see if Im experiencing early menopause from the chemo but he said We could check now but lets wait a year or two! Im like what!? Im 26! Its time for me to know if Im able to have kids!! So needless to say Im seeing a new dr. Plus come to find out, my mom saw him too and he's known for not taking patient concerns seriously and missing things. Wish i knew this prior to my visit! Like i need extra bills! Lol

Saturday, April 6, 2013

crohns and birth control

Im over the pneumonia except a cough. I just found out that birth control pulls may not be as effective in patients with crohns because of the absorption issues. I switched to the patch but am changing to the depo shot next week. Regardless of my sex life or lack there of lol i want to be careful because a pregnancy could trigger a flare and i can't risk that right now. Or ever really. Ive been through too much. But with Gods good grace and love i will get back to being normal soon enough! :)