I hope everyone takes the time to read this. I just need to get something off of my chest. I have noticed throughout my health problems I don’t receive near the support a lot of others do. I have been told it’s because I was undiagnosed. I understand I am undiagnosed but is that a reason not to support somebody? Maybe people should try a different approach on to things and try supporting someone that is undiagnosed to help them get diagnosed. I have also heard it’s because you’re not a little kid, so, you don’t have that “awww, your so cute” factor and I understand that but who wants to see a 19 year old on a heating pad almost 24/7 and on Dilaudid and Morphine, not be able to attend college in person, not be able to hang out with friends, not be able to make plans and have to cancel plans, ect. And, I have also heard, it’s because you don’t have tubes and stuff coming out of you, no, I don’t because my illness does not cause for that. It is called an invisible illness and it is called that for a reason because you look fine on the outside but on the inside everything is not so great. And, I don’t look good all the time, during my seven surgeries since 2010 I didn’t look good, when passing my 73 kidney stones at home and in the hospital I didn’t look good, ect. I know people that have had cancer among other things that looked fine at times just because you look fine does not mean you are ok. No doctor is going to give a 19 year old Dilaudid and Morphine if there is nothing wrong, no 19 year old is going to have 7 surgeries since 2010 if they are fine including 2 colonoscopys and 3 endoscopys and also a liver biopsy. No 19 year old is going to have so many CT scans they don’t want to do anymore because they are afraid of a cancer risk because of the radiation if they are fine, no 19 year old is going to have 2 picc lines if they are ok, no 19 year old is going to be on disability, have a paid fulltime caregiver if they are fine, no 19 year old is going to be on Medicaid if they are fine, and I could go on and on. So, yes, I’m not diagnosed, no I’m not an adorable little kid, no I don’t have tubes always sticking out of me, and yes, I do look fine at times but look at the bigger picture. It sucks not having support because I’m not diagnosed, because I’m not an adorable little kid, because I don’t have tubes sticking out of me and because I do look fine at times. That one person that never supported someone like me, if they started after reading the post, just to have that one extra person, say, I’m sorry and you are in my prayers and donate to help get me to a bigger hospital so I can get diagnosed could make my day a lot brighter by doing one or both of those things. I am grateful beyond words to have had the United Methodist Church here in Strasburg do a benefit for me and Danni Leigh, I don’t even know what to say about her. Her support since she has heard my story has been non stop and her wanting to help has not stopped either. Everytime I see her she brings a smile to my face just because of the type of person she is but also because she truly is supportive and she truly does want to help regardless of all those other facts I listed above that has discouraged others from helping. Danni is an amazing person and I am so glad we met her, I truly believe she was put in my life for a reason. Randall from Hangouts Grill has never met me but is supportive and also wants to help despite all those other facts that push others away from helping me. I am very thankful for that as well. There have been people put in my life and I truly do believe they were put in my life for a reason. Those people that are supportive, those people that want to help, those people that have helped, I want to say thank you. When you were supportive, when you said, you wanted to help and when you did help, you made my day a lot brighter. Imagine walking in to your doctors office and your doctor turns around and says you will have kidney disease, I don’t know when but it will happen, and then they continue on to tell you it will go into kidney failure and my counselor who previously worked in the dialysis unit has told me I would rather see you get a kidney transplant then see you go through dialysis. Imagine someone saying that to you, now imagine someone saying it about a family or friend, and now last but not least, mom and dad’s, imagine that being said to your child. An invisible illness is just that, invisible. You look fine on the outside but on the inside you aren’t ok. That one person that says, I support you, makes my day so much brighter, I can’t even put it into words.
Posted on: Wed, 15 Oct 2014 00:25:22 +0000