30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know 1. The illness I live with is: Crohn's Disease and Grave's Disease 2. I was diagnosed with it in the year: Crohn's - 2012; Grave's - 2014 3. But I had symptoms since: It is believed that I had Crohn's 15-20 years prior to being diagnosed. With the Grave's, I honestly have no idea as I was completely shocked to get diagnosed. 4. The biggest adjustment I’ve had to make is: My life has completely changed in the last few years. 5. Most people assume: that I am fine because I look fine. Not true. 6. The hardest part about mornings are: physically getting out of bed 7. My favorite medical TV show is: Grey's Anatomy 8. A gadget I couldn’t live without is: my cell phone 9. The hardest part about nights are: not sleeping. ugh. 10. Each day I take __ pills & vitamins. (No comments, please): Depends on the day honestly. anywhere from 10-40 pills a day. 11. Regarding alternative treatments I: believe that they can work, however, I haven't been able to get either of my diseases enough under control to test the alternative methods. 12. If I had to choose between an invisible illness or visible I would choose: visible. I am so tired of the "but you look fine" BS 13. Regarding working and career: I work full time in the mortgage industry. 14. People would be surprised to know: that I sleep literally all weekend to recover from the work week. 15. The hardest thing to accept about my new reality has been: that my life isn't going to be what I thought it would be. 16. Something I never thought I could do with my illness that I did was: speak up about it. Get my word heard. (that rhymed lol) 17. The commercials about my illness: seriously piss me off. Someone get that chick a damn navigation system to help her find the f*cking bathrooms. 18. Something I really miss doing since I was diagnosed is: seeing my friends 19. It was really hard to have to give up: my social life. 20. A new hobby I have taken up since my diagnosis is: reading, puzzles 21. If I could have one day of feeling normal again I would: do whatever my husband wanted. He is always sacrificing for me. 22. My illness has taught me: who is TRULY by my side. It's only a small handful, but I know that they are there unconditionally. 23. Want to know a secret? One thing people say that gets under my skin is: when people recommend "cures" for my disease. Newsflash! there isn't one. eating tree bark just because it worked for your mom's cousin's dog, doesn't mean it is true. 24. But I love it when people: reach out to me, even by email, text, etc. Just to know that you do care. 25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass. Or, If God brings you to it, He will bring you through it. 26. When someone is diagnosed I’d like to tell them: That I am there for them and it's a long, hard road, but you will be more tough in the end. 27. Something that has surprised me about living with an illness is: I know more about my body than a normal person should. I can tell you what vein to hit with what size needle, etc 28. The nicest thing someone did for me when I wasn’t feeling well was: just reach out. I have a few friends that will sense that I am down and all of the sudden, a card is in my mailbox...or a sweet text pops up on my phone, etc 29. I’m involved with Invisible Illness Week because: we need to be heard! 30. The fact that you read this list makes me feel: good.

me and my Crohn's story.

Because this is a new blog, I figured I would share a little bit about me and my story with Crohn's Disease and Grave's Disease. My name is Amber. I am married to Ben. I'm almost 36 and Ben is 33. We have been married for 2.5 years. We live in Texas with our sweet fur daughter, named Belle. Where to start??? Crohn's Disease - What is Crohn’s Disease? Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. When reading about inflammatory bowel diseases, it is important to know that Crohn’s disease is not the same thing as ulcerative colitis, another type of IBD. The symptoms of these two illnesses are quite similar, but the areas affected in the gastrointestinal tract (GI tract) are different. Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal (GI) tract, from the mouth to the anus. Ulcerative colitis is limited to the colon, also called the large intestine. Crohn’s disease can also affect the entire thickness of the bowel wall, while ulcerative colitis only involves the innermost lining of the colon. Finally, in Crohn’s disease, the inflammation of the intestine can “skip”-- leaving normal areas in between patches of diseased intestine. In ulcerative colitis this does not occur. Recognizing the Signs and Symptoms Crohn’s disease can affect any part of the GI tract. While symptoms vary from patient to patient and some may be more common than others, the tell-tale symptoms of Crohn’s disease include: Symptoms related to inflammation of the GI tract: Persistent Diarrhea Rectal bleeding Urgent need to move bowels Abdominal cramps and pain Sensation of incomplete evacuation Constipation (can lead to bowel obstruction) General symptoms that may also be associated with IBD: Fever Loss of appetite Weight Loss Fatigue Night sweats Loss of normal menstrual cycle People suffering from Crohn’s often experience loss of appetite and may lose weight as a result. A feeling of low energy and fatigue is also common. Among younger children, Crohn's may delay growth and development. Crohn's is a chronic disease, so this means patients will likely experience periods when the disease flares up and causes symptoms, followed by periods of remission when patients may not notices symptoms at all. In more severe cases, Crohn’s can lead to tears (fissures) in the lining of the anus, which may cause pain and bleeding, especially during bowel movements. Inflammation may also cause a fistula to develop. A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin. This is a serious condition that requires immediate medical attention. THERE IS NO CURE FOR INFLAMMATORY BOWEL DISEASE. **My story with Crohn's Disease** I have had stomach issues since I was born. I went through a series of tests in junior high and nothing was determined. In my late teens, I started having more issues. It was then determined that I had multiple gall stones and needed my gall bladder out at age 19. This was a quick easy surgery and other than chronic diharrea (sp?), I had no lasting side effects from it. However, my GI issues remained. I just associated it with the gall bladder removal and learned to ignore the pains. I had periods of bleeding and extreme pains, but again, I learned to ignore it. Right around the time of our wedding I started becoming very weak, fatigued easily, and would go through extreme abdominal pains. 5 months after our wedding, I was at work...having bleeding and doubled over in pain. I tried to sweat and breathe through it, but it became too much. On May 6, 2012, I had enough and went to the emergency room. After getting an IV for pain meds and drinking contrast, I underwent a CT Scan. Within an hour the ER doctor came in and told me that she believed that I had Crohn's Disease. My mom and I sat there in shock. You see, my great uncle (maternal Grandma's brother), Daddoo, died from Crohn's Disease when I was a teenager. So, you could see how this was terrifying for me. I saw a GI within a few days and on May 22, 2012, I had my first of many colonoscopies. Crohn's Disease was confirmed and it was severe. Because I had ignored the pains, symptoms for so long and had so much scar tissue built up, it was determined that I probably had Crohn's for 15 to 20 years prior. I had a narrowing (also known as a stricture) in the small intestine. So much so that I was restricted to only eating soft foods that have little to no fiber. I was put on prednisone, anti inflammatory pills (12 a day to be exact) and a biologic drug called Humira. Humira is taken through injection that I had to give myself once every 2 weeks. The goal of this was to crash my immuno system so that it would stop attacking itself. None of these drugs were working, so they paired all of these with another immuno suppresant drug called Mercaptopurine (or 6-MP). I did feel better for a short amount of time. Because these crashed my immune system, I was constantly sick. At one point, I picked up a stomach virus and was hospitalized for dehydration and low potassium. Let me tell you, potassium is no joke. I was in the cardiac care unit for 4 days while they pumped what I call "liquid fire" or potassium through my veins. Once I was stable, I went home and have been on prescription potassium since. I tried explaining to my GI that I wasn't feeling any better Crohn's wise and was argued with. (that's a different story, for a different time). I ended up firing that GI from my care and found an amazing GI that would listen to me and really heard me. After more testing, it was determined that I was having full obstructions at my stricture area several times a week. Most women will say that an obstruction is worse than full blown labor. At this time, I was referred to UT Southwestern for a 3rd opinion and ultimately sent to a colorectal surgeon. This surgeon literally saved my life. Three times to be exact. On August 9, 2013, I under went a lower right colectomy surgery. During this surgery, I lost about 18 inches of small intestine, 2-3 inches of large intestine, my appendix, and my illeocecal valve. I was inpatient for 6 days following surgery and out of work for 6 weeks after this. For a while, I was doing good. I felt better for once. Well, this was short lasting. In May of this year, I went for my follow up colonoscopy. This showed what we had feared. The Crohn's is back and attacking the surgery site. I have several ulcers and I am once again on immuno suppressing drugs. This is where I am at this point. We aren't sure what the next steps are, but more than likely I will be doing IV infusions of stronger drugs. Please stay tuned for the next steps.....Grave's Disease.

a new blog?

You guessed it, I am creating a new blog just to talk about my everyday life with Crohn's Disease and Grave's Disease. I hope you will stick around. :)