I’m in Montreal again this week and its been busy at work but uneventful all the same. I wanted to write about the pain of those “hidden illnesses” that are invisible. I saw a link shared on Facebook that really hit home. It was a story called the “Spoon Theory” on www.Butyoudontlooksick.com. It was a story shared on how a person deals with lupus or another invisible illness every day.
So many people suffer from Fibromyalgia, rheumatoid arthritis, Lupus, etc. My sweet little mom has Lupus and it’s crippling. There are so many days that she has to make herself get out of bed. It takes everything she has to get dressed and to get herself a glass of water to take her medicines. When I went to Montana last September to visit, her face and head were covered in very painful red sores.
Mom has to wear a hat at all times because the sun aggravates the sores more. She doesn’t always have the sores but she has these “flare ups” every now and then. She has very short hair because its easier to manage and at one point her hair has fallen out from certain medications. Many of her medications are very expensive and they don’t ease much of the pain for her. Her medical bills are sky high and of course she has not been approved for disability. My mom cant work and it just doesn’t make sense that the state or government wont approve her. She now has depression and anxiety (big surprise) and it makes me literally cry when I think of her in so much pain. My mom has the most awesome sense of humor and she’s able to mask her pain like a pro.
One of my close friends in Dallas has her husband going something very similar. He is so young (40’s) and served in the Gulf war. He started having some nervous system problems about 2 years ago. His legs would be cold even during the 110 degree summer. He aches all over and couldn’t continue his job. Clothes sometimes hurts so he has to wear loose sweats. He’s now suffering from depression which is common when the Man of the house cant provide. He’s been dealing with the VA but so far no luck there either. So much red tape to get any assistance.
I had a friend a few years ago (we lost touch) that had RA and she had to park in handicapped to go grocery shopping. People would be so mean to her and giver her the dirtiest looks. She dressed very nicely and she walked with slight limp on a cane. It was hard for her to walk for very long periods of time and definitely long distances. Why cant we just not judge and mind our business. Do you know the story of these people you’re questioning?
I have chronic back pain and I’ve learned to just smile and deal with it. At the end of the day, I am so blessed to have the mobility and health that I have. Montana might as well be Egypt as far as I’m concerned. I only get to see Mom once a year and I miss her so much! I want to hug her and take care of her like she did me when I was little.
I have some good news regarding my Dad’s treatment. After many months of waiting and my Dad’s frustration shooting thru the roof, we finally have a date for his “Big Treatment”. To remind you – Dad had bone marrow drawn back in December. That bone marrow was then sent to Tel Aviv where the stem cells have been separated, grown, etc. Dad and my stepmom Deb will be flying to Santa Domingo (Dominican Republic) on Wednesday , June 20th and his treatment will be that Friday the 22nd. They will fly home on Sunday after. Dad needs a few days in between flying because its super hard on him. He’s completely on oxygen and has to use a wheelchair to get around. With layovers and everything it really takes a lot out of them. We are so excited for this. Its supposed to go directly to his lungs and start repairing them. His last stem cell culture was a great success when they did the “mini” treatment in Florida. Stem cell therapy is amazing and the US needs to get on board with it more than it is. It’s ridiculous that my parents have to leave the country to get treatment to survive!!!
Ok, both my parents are in poor shape and I guess I really miss my family. Sorry for the ranting and raving but it’s whats on my mind.