MS. Two simple little letters that abbreviate a huge disease. A disease that affects everything in your life and I am not even the one that has it. Watching Steve deal with the mental, physical and emotional issues with MS is not always easy and I admire that he may have his bad days but he also stays amazingly positive and tries to not let it rule him.
People tend to think of MS as just feeling tired. It's more than that. It's expensive medical bills and anxiety to make a diagnosis. It's facing MRI's for three hours each session to pinpoint where lesions are (and will do this every year to see if anymore form). It's arranging your work schedule to make it to appointments. It's arranging your home schedule so Steve can rest but never letting him know just how much you worry while you do the chores.
It's listening to a husband that has days he worries he's a horrible father because he doesn't feel like playing on the trampoline. Or a horrible husband because this weeks shot may make him feel like crap and he'll have to cancel date night or not eat supper with the family. It's being strong and saying "Things will be ok" even when you worry whether it will be. It's watching a man that was once physically active every single waking minute, always outside and going.....now taking a break. Or pushing himself hard today to do family stuff and then having aching legs the next day.
It's dealing with drug companies that say you make too much money and after insurance want a minimum of 800 dollars for 4 shots (a month's dosage). It's dealing with an insurance company that still sees Steve's medicine (the oldest on the market and the stepping stone to other drugs he may have to take) as alternative. It's meeting your rather large family deductible, using up your health care credit and meeting your out of pocket of 10,000 (all before Oct!!) It's arranging payments on big bills like hospital stays and MRI's and coughing up decent sized chunks of money to get into the door for certain tests. It's faxing one paper to allow another paper to be faxed just so they can speak to me if Steve doesn't know the answer or feels bad that day.
It's dealing with setting up home visits from the nurse to teach us both how to do shots. It's sitting in the hospital for 3 hrs 3 times a week every six months or so for steroid drips that make Steve like a hummingbird on crack for a few days then drops him off the bottom as if he's having withdrawals and blurs his vision.
It's watching your husband dreading to push the injector on his pen shot because he's afraid he'll hit a sore spot again and bleed or worse...have leg pains. Watching him battle 102 degree fevers after taking 1600 mg of ibuprofen. Laying in bed shaking with the chills and being too dizzy to walk. Listening to the sympathetic nurse tell us to hang in there it tapers off after 2 months.
It's dealing with family that skirts the issue entirely or avoids us if it's shot time. Leaning on my Mom probably more than I should because she understands. Having family and friends think because they see us out as a family or that Steve smiles and says he's feeling ok...that everything is fine. It's family that seems to have forgotten that simply because money is tighter for a bit or we juggle around the medical issues and affects...we still have feelings and we exist. And it's being thankful for the outpouring of caring and love from my best friends and good family,from friends, and from co workers that understand more than most.
But things are getting better. Two weeks (knock on wood) with no drug effects from the shot and Steve has only been having some leg issues (other than the feeling of feeling cloudy headed that he deals with alot) Kaya doesn't think of Steve any different...Daddy just needs to rest sometimes. He does an excellent job of no matter how he feels Kaya is taken well care of all day and he always thinks of something family oriented on the weekends.
Soooo MS you are going to be only two small letters in our life. We won't let you win, we won't back down or give in.
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