When I was 2, I was diagnosed with a rare Kidney and Liver disease, Primary Hyperoxilosis. When I was 23 I was diagnosed with Hashimoto's Thyroiditis. Now 26, on Monday I was diagnosed with Celiac disease. All common factors in these diagnosises, it was a fight for simple tests to get answers. My family spent nearly two years traveling back in forth from Michigan and Colorado trying to get answers on why I was so sick as a child. Which after it was discovered I went through renal failure twice, and spent ages 3-10 on and off donor lists for a new kidney and a new liver and came close to death 2 times which one of I remember very, very clearly. I remember a lot of my childhood vividly because of my time spent battling this disease in and out of a long hospital stays, some months long. I also personally spent 3 LONG years and went thru 7 Doctors trying to figure out what was wrong with me, only to find after being blown off by one Doctor after another that I had stage 0-1 tumors growing on my thyroid that were blocking my airway that ended up in a rather critical surgery in May of 2010.
Being an adult at the time and having just met my husband, being nearly 3,000 miles from home, being in scary state of health, all alone just being told you have to go through 15-18 rounds of radiation is not fun. In fact the 2 years leading up to my dx my day to day became very scary. When my neck flare ups would happen (good antibodies attacking good antibodies) I passed out from lack of air multiple times a week. Then the flare ups came more and more often and the symptoms became more and more worse. And I'd get to the point where I felt like someone was physically strangling me. Those flare ups lasted hours long and started happening a few times a day the last 4-5 months.
At the time I was in a non-drop out/refund type of school program while we were waiting for our insurance to cover the surgery (I was in a waiting period for pre term conditions, that weren't covered yet :/ ) and I kid you not I have no idea how I graduated on time and with a 3.6. No idea till this day. 09 and 10 were some of the hardest days of my life and my husband was the ONLY person who saw what my day to day was like. And it wasn't good. Not what you expect your first year of marriage to be like.
And lastly the last 18 months (9 of which I carried a baby) I spent in and out of Doctors offices trying to understand what was wrong, only to switch Dr's for a "second opinion" and have a simple blood test show results. I spent every day from 6 weeks post natal to my son being 10 months old throwing up and in a level 10 abdominal pain to which I kid you not made me want to give up. During this same time I've be seeing dr's for numbness throughout my body that is very painful, that yet to have answers.
Each and every one of these times in my life I have been told things that I didn't want to hear. "You only have until you're 8 to live," after 8 passed slowly after surgeries and months long hospital stays, then 15. I've been told i wouldn't make it to 30 without kidney failure and or transplants (still waiting), "You have cancerous cells on these tumors which I can't tell you how bad it is bc your biopsy and blood tests are giving us two answers. Either way regrowth can occur during the flare ups which could turn into Lymphoma at any point as long as you live." "You can not eat Gluten ever again or else it could kill you over time, cause cancer, osteoporosis or even worse" I'm at the point in life where what ever happens happens, but I can't help but ask myself everyday, "Why me?" These diseases will effect me till the day I die, every one is uncurable. There is something I go through every day with these health problems. Between the mass amount of medications, awful side effects and money that is spent on medical bills each month and year it leaves me drained some days. BUT I am here to say you can get through it, the battles inside you. It just takes a lot of blind positivity. I say blind because whatever the unknown is, whatever is meant to happen to you is going to happen regardless, so why not make the most of what you have and live everyday in happiness. You can not control the unknown. This is the one piece of advice I carry with me everyday.So with that, you also can not live in fear. The next thing that keeps me going (besides my loving husband and sweet baby boy) is that no matter how hard your life can be, no matter what YOU'RE going through, someone else always has it WORSE. I'm not saying I'm perfect, I have my bad days, but just know no matter how much you can hurt and how rough some days can feel, there is someone in a wheelchair, blind, crippled, dying, homeless, etc etc the list could go on that have it worse than you. Oh and lastly---laugh! A sense of humor is key to staying positive. I can't tell you in how many of these situations when they have told me bad news I told jokes and laughed in between to keep moral up. My husband was sitting there after my oncologist told me "when I cut you open then I'll know how bad it is" and he of course didn't think I was funny in fact he just cried that day (for a few different reasons), but it sure lightened the mood. I've always been a goof and a smiley person, which is why unless it's known most people don't know how to react when they find out what I deal with everyday, because I don't show the struggles outside of closed doors.
So I guess this is a bit of my intro. My background. I'm frustrated and sometimes angry inside, but I've always stayed positive (until the past year) I feel along with my health problems and struggles I have also had my share of life experience that I think at this point maybe I can help someone out there with their battles.
Maybe in some of my posts when I dig deeper into the struggles and symptoms leading up to my diagnosises, it could reach out to someone else who could be searching for answers to. So with all that said, it was nice to vent this little bit out. I like writing, I always have and I think this is a good start for me making some difference out there one post at a time.
So here's to this new chapter learning how to live and cook without Gluten! Yikes.....:) (the last few days have been rough getting off of it since Gluten is in EVERYTHING and is pretty alarming!)
<3
Here's my "new" rice pasta Mac N' Cheese. I put a little parmesan and hot sauce in it to make it more tasty. The rice pasta is sweeter tasting so adding the two makes it more of a savory taste!
