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 :)
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!
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....
Haven't even been able to enjoy chicago yet. Been in this stupid hospital and on trains all day. Im hungry. Im tired. Im ill
Lol I feel like seriously fussing.
On a different note, Dr. Burt doesn't think it's crohn's that has spread based on the tests, but instead something new possibly? Dr. Yun, the GI has different opinions. I like her though. She takes my concerns seriously.
I guess im the only one that thinks my 2nd bday aka the day that marks im still alive is a big deal. Football first. Social events 1st. Everyone elses plans first. Me being alive second. If I dont stay for the game im a disappointment. If I stay and am not wanting to im disappointed. Lose lose to me. But whatever. Im at a point where im not seeing much of a point. Im tired of being optimistic and pleasing everyone else. Im tired and I just want this to be a special day. But now it never will be. If it's not done because people care but instead because Im being selfish then whats the point. And im the only one that sees its importance. Maybe because im the only one who is still alive because of it. I try every single day to be strong and inspirational and do things for others but honestly, im tired. Im tired of the forced smiles to hide the hurt and pain. Sometimes I can't be the inspiration. Sometimes I need the inspiration. I just want someone to think of me 1st on what I think is an important day. But really here I go again, selfish, selfish selfish. I feel like retreating at this point. Inwould love my own little bubble that i cant affect anyone elses lives. I think this is called depression. But I guess im the only one who sees it. Im trying with all my strength to stay strong for everyone else, make sure the world is happy and I improve it, not ruin it, but I seriously don't have much fight left.
I know im supposed to be positive and uplifting for everyone who reads this. But that's not real. It's not reality. I'm not perfect and im certainly not an all day ball of optimism. Im sorry for that.
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.
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!