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!

Oral Surgery and Update

I had my top 2 wisdom teeth out Thursday morning. The bottom 2 were taken out in Chicago 2 weeks before chemotherapy. I kept getting infections in the bottom 2 so they hurried up and took them out while we were in Chicago to harvest my sister's stem cells. That way it would be covered by insurance under the transplant since, well, you can't have chemo with constant infections!

Anyway, so these 2 have been much easier. They sedated me (not like the 1st 2) and they don't hurt nearly as bad. I mean im sore of course, but in comparison I am handling these mich much much better! I'm already on almost all regular food!

I had a checkup with my GI yesterday. He said the camera endoscopy came back normal. He said since i keep having recurring problems, it's most likely a low level active crohn's. Hence it not showing on tests but still giving me problems. I took a course of cipro (antibiotics) and it has really helped so I am super excited about that! He said that may be something we revisit if and when I get sick again.

But for now, everything is going well.  I'm feeling good most of the time, im getting used to my new bifocal glasses and my gums are healing well!

Update on my health

Im still having this flare up and it's getting worse. The nausea and urgency is getting bad.  The entocort hasnt started helping yet but I do feel like its going to.  And im not having the same side effects as with regular steroids. I like that.

Followup With GI

I went to my post hospital followup visit with my GI doctor.  He said I need to continue on disability for a while, if not permanently. He is keeping me on prednisone for the full course and then may be trying a new crohn's medication.  I can't remember the name but I promise to post about it and any info I get as soon as I know!

Thanks for keeping in your thoughts and prayers!

January 2015

Ive had a few days where ive been incredibly nauseous but all in all ive been feeling well. I'm getting out there and enjoying my time with friends and family and I'm happy, that helps my health a lot.

I guess it's a good thing that I dont have much to share!! :)

Daily update

Ive been feeling a little better the last couple days. A little more like myself.  I keep missing the calls from my gi and every time I call back they say they'll call me back...so maybe Monday we will actually get to schedule something.

Oncologist Appointment

I saw my oncologist yesterday.  Here's what he said:
-lymphocytes are even higher
-white blood cells are up
- and of course not to go to urgent care anymore because they don't have my history and the bells palsy needed to be seen by my primary care doctor or the er since im post transplant. .awesome.

Pictures of Me & My Life! OCT 2014

Sometimes any answer is best

The doctor can't explain why I slept the way I did and cant remember those several days. He's sending me another neurologist. This is frustrating. People keep saying well no news is good news. Forget that!! To a sick person, no news means no answers means I have to stay sick because they can't fix it! This is no way to live. Don't get me wrong, this is waayyy better than pre transplant.  But daily diarrhea,  vomiting, extreme fatigue,  and constant pain is not fun. And it's not normal! But it looks like I have no choice but to make it normal ugh.

I read an article about the effects of Crohn's disease on the brain and how it causes migraines and memory loss after about 10 years after onset of the disease.  Which I where I am (I was diagnosed 7 years ago,  but I was sick for several years prior to actually going to a doctor). I will find the article and post it on a separate post! It's so interesting and I think all of us crohnies and our caregivers need to read it and give it to your GI! It may actually explain my problems and my doctors are oblivious!  I'm plnning on taking to my gi, neurologist,  and oncologist.  I will let you know their feedback! :)

Sleeping Beauty

Omg im so exhausted.  I know I've already posted about this a million times but im so sick of sleeping my days away. I wamt to experience life again. It feels like this will never happen

But I gotta keep my head up because God has it all in control!

Pics of me 2 years post transplant

Naptime, new clothes and me just being me!

Poop Study

I know, I know. How can you not giggle? We all have that 12 year old living inside of us. :) and the pictures don't help. So go ahead,  get it out, lol, and then actually pay attention.

Pics from my 2nd second bday

Here are pics from when we got home!

Thank You Sister

I'm so fortunate to have an amazing sister like mine who selflessly gave her stem cells to help me get a new life! She's so awesome and I can never thank her enough!

I love you sister!

Happy 2nd birthday

It's my immune system's 2nd birthday! ! I dont know exactly what im doing to celebrate yet, but im definitely celebrating!  I'm feeling blessed to have had this treatment and still be in remission! This is a feeling I never thought I'd experience again and it's incredibly humbling :)

2 year Followup Complete

I'm sorry I didn't post yesterday. I decided to do something for myself after Dr. Burt kind of upset me in my appointment.  He basically said since my Crohn's is in remission then the pain is in my head and im hoping to be sick. He said I tried to say I have lymphoma and reoccurring crohns. ..let me get this straight as I did with him...I have lymphocytocis,  elevated lymphocytes.  I went through 3..I repeat THREE bone marrow biopsies.  Who would WANT that???? Who would want to be tested for cancer??? I know I didn't!  And I know I was glad as hell when it came back negative!  And im glad as hell their ct scan showed no crohn's! ! I mean really! ! I have pain. I get sick. I have fybromyalgia and other health issues, he didn't treat those. He needs to remember that. It's a crappy, and invisible disease.  And my Crohn's is NOT cured. Im in remission but I do still have symptoms.  Not bad and not often and I thank God for that healing!!

Ok! Well I saw the psychologist he sent me to and she was incredible!  She didnt make me feel stupid or ignored! She really inspired me! :)

Im boarding the plane home so I have to go but I will post later! You MUST see pics from the art institute!

Update in Chicago

All of my bloodwork and ct scans look good! It's not crohn's in my ileum. They didn't see anything but im not sure how 2 ct scans back home show something and one here doesn't. ..hope to find out more there. However, the biopsies from my last scopes definitely indicate there is no crohn's in my ileum. Thats good news! Now, let's see what's going on!

I'm currently waiting to see Dr. Burt so I will post again later today. He also wants me to see one of their psychiatrists. His nurse said he thinks its helpful with the coping of chronic illnesses...not sure how well that really works when we consider continuing care 650miles away....

Yep I Got That Too

Since my blog is about my journey in Crohn's disease and my stem cell transplant, many of my followers and even friends, don't know all the other health issues I carry with me. I posted below pics of other health problems I have to deal with on a daily basis. Some have information attached,  some just state the problem. And some, as you will see, are very personal and this is the first time I have ever come out publicly. You will know what I mean when you get there. The point of this post is not to "show off" all my problems and definitely not for sympathy. I'm merely giving you a bit of insight in to the world of, well, me. And I hope some of them can help some of my readers feel more relatable and even give them more confidence and courage to seek medical attention for problems they may have as well! So here it goes!

Side note: I am seriously diagnosed with these issues. I am by far not a hypochondriac.  I would trade anything in the world to not have the health problems I have, but this is the life I've been given and there's no point in denying any of it. And if anyone of my fellow crohnies or loved ones of Crohn's patients know, many of these illnesses come hand in hand with autoimmune diseases such as Crohn's disease.

TIA plus anxiety equals NUMB

I did have a mild TIA. Basically a "mini stroke". Fortunately, they clear up on their own but they are warning signs of a more serious stroke, which is why it's important to check for clots and neurological damage.  I had a CT scan of my brain and all is good! So no worries there! Anxiety just made it a little worse. In case you didn't know,  anxiety can cause numbness and tingling in your hands and feet. But they have me some pain meds and sent me home and I'm doing fine now. I officially can feel my left arm again lol

Now I just finished watching the rest of Robocop with Tim and am currently in the middle of Transcendence. I leave for Chicago tomorrow evening so we are getting in as much quality time as we can for tonight.  He goes to work at 1pm tomorrow and I won't see him again until he picks me up from the airport Thursday morning :( im going to miss him. Crazy how only a few days away from the one you love feels like eternity!  I know, corny! Lol

The doctors in Chicago were supposed to provide funding for 2 nights while I'm there.  However, there are no available rooms. I suggested last week I would stay near the airport and travel via teain in to town each day. ..well they never booked the room!! There is now literally only one hotel room left!! And it's in Elk Grove!  Outside of Chicago!! I had to book it myself and am basically going to demand reimbursement.  I don't see why they wouldn't since they were going to fund 2 nights anyway and I booked an even cheaper hotel.  Any suggestions on how I should go about this with them?? I sent an email to Dr. Burt's go to person so say a prayer it all works out!

Off to finish the movie and get some sleep! God bless everyone and goodnight!

Ughhhhh

I'm back at the hospital.  A possible TIA. My left side went numb and tingly and my head is throbbing. Since I have a PFO and brain damage,  I'm high risk for stroke so I wanted to rlbe cautious.

But I really wish I just came and didn't tell anyone. Now im basically just a burden and inconvenience to everyone I get close to. I used to do all of this alone. And now I wish I still did. My entire life is an inconvenience. 

Friends, family, they're all bothered because I have to leave things early or go to the hospital way more than a normal 27 year old. Nurses and doctors are annoyed because they are oh so busy.

I've been dealt a life of pain and illness and this is it. This is me. My entire life is an inconvenience. I've actually not sought out medical attention because I didn't want to mess up someone else's day. It seems selfish for me to ruin someone else's plans to deal with my neverending health problems.  It's my problem. No one else's. And I'm honestly sick of the sighs of frustration I get when I say I need to go to the er...like I WANT to be there. I dont want to spend anymore of my time in these places than you do. Trust me.

I've made the decision to go back to how I used to handle my health, alone (with the exception of God). Because let's be real, you only are here because you think you have to, not for me. And you aren't tired because you feel my pain and it hurts you, you're just tired of coming because it interrupts your day..well im sorry and trust me, im doing this alone from here on out. It's easier that way. Remember,  my life is an inconvenience.