Monday, March 11, 2019

2019 update

So im waiting on my keyboard to come in so I can really blog. It is so hard to do on a phone!

I feel like my Crohn's is the same. Same diarrhea, same pain. No change. My spondylitis is so bad. My sciatica is always hurting. Stelara isnt helping. I go to physical therapy once a week and it helps but after a day, im back in excruciating pain. But ill accept that day. It's better than nothing! Dry needling and massage is a god send. I highly recommend needling or acupuncture. You can actually immediately feel the difference! I get severe pain in my legs and this helps me be able to walk better. I love it!

As soon as my keyboard comes in, my posts should be much better and frequent!

Tuesday, December 18, 2018

Another Day of Me and Maybe More?

Originally this blog was started to help me process every thing I was going through with my stem cell transplant. Then after it all calmed down, i stopped writing. I automatically assumed I had nothing anyone would want to hear.

Im learning now, I need to write for me and in the process, I hope someone reads and relates. My greatest wish is that someone can learn from my journey, from my pain, and it can help them. We all know Crohn's doesn't just affect the body, but it alters the mind as well. Sometimes all we need is someone else who gets it. You know, REALLY GETS IT!

I hope that as I start back writing more often, God will give me the words that you may need to hear.

As for today, remember you are special and loved. Crohnies United!

Thursday, September 13, 2018

Flare Up & 6th Stem Cell Birthday

I have been having a bad flare with diarrhea like 15 times a day. It has been going on a few months but Sunday I saw blood so I knew I needed to make an appointment.

I'm being tested for c diff. Ugh, it's been 6 years since I have had c diff and I so hope this isn't it. It isn't the type of thing you look forward to.

My blood work shows elevated inflammation markers and low hemoglobin.

On that note, today is my re-birthday! 6 years ago today was day 0 and I received my sister's stem cells and started my healing journey! I have had my ups and downs but I'm not dying anymore so yay! Lol

I'll keep you posted on my lab results!

Wednesday, May 30, 2018

May 2018

I have been having a Crohn's flare lately and am going to try some Rowasa. I'm in so much pain and bloated.

I'm anemic. I don't really know why but I am. I can't take iron supplements because I just can't digest them. I don't know what to do. I eat as much as I can. I take gummy multivitamins but it's not enough. This is probably why I'm sooo exhausted. Not to mention I'm trying to quit caffeine and smoking. Lord, help me.

My arthritis is so so but restless legs is killing me and keeping me up. I see my rheumatologist in a few weeks so i guess I'll be bringing it up to him then. The stelara injections seem to help a good bit of the pain but I still get searing pain up my back and in my hands so that's something we still need to work on.

I already take antidepressants and anxiety meds but sometimes I go through rough patches where I feel so down for no reason at all. It's really to be expected with all I've been through. I'm always terrified of going somewhere and being sick or in constant pain. It's very PTSD-like. It's a panicky dread of leaving the house. If any of you feel this related to your IBD, please know you aren't alone. And I promise, you'll get through it!

Sunday, April 8, 2018

UPDATE 2018

Here is my year so far:

I've been under stress so I've had a bit of a flare. I'm on Rowasa as needed for that.

My arthritis is bad. My rheumatologist thinks he may need to double my stelara dosage.  So we shall see.

I went to donate blood today and couldn't because my hemoglobin is 9.6. Guess i get to start some iron for that. But i have no idea why it is so low! Ugh!

About a month ago, i fell off a chair and scraped up my entire side, took a chunk out of it and hit my head pretty bad. The wound got infected because of my suppressed immune system. It's all healing now! It's going to leave a huge scar. And i had some brain trauma so I have to go back to my neurologist.

Updates to come!

Thursday, December 21, 2017

Inflammation All Over

I had bloodwork done at my rheumatologist the other day and my counts are definitely showing inflammation and I am not surprised.

My joints have been killing me. My stomach is in pain. My eyes are throbbing. I have to go to the eye doctor asap!

Will update when i get answers!

Saturday, December 16, 2017

Christmas Update

I have been feeling so so lately. I have had some pain during my cold even though i wasn't taking any meds. But im feeling better now.

My arthritis is KILLING me. I can barely move my elbows and wrists...some days, my entire arm.

But other than that, i am good to go!