Physical therapy is so important for people with MS but unfortunately insurance companies don't see it that way. Our current insurance only covers 20 visits a year and only covers a 30 minute session at that. I'm still fighting with our last insurance company because they just stopped paying my pt bills at the beginning of last summer with no logical explanation. Insurance has become big business with an end goal to deny as many claims as possible for maximum profits but where does that leave sick people? It's bad enough that they treat MS like a common back injury expecting constant progress notes from a PT before they will provide the most basic of coverage. Physical therapy is a necessity for people with MS, not a luxury. In my advocacy days, we worked hard on trying to get insurance companies to cover PT for people with MS on an ongoing basis because that's what we need to stay mobile. This damn disease stiffens and contorts the body so badly that it takes constant manipulation to keep our limbs and body more agile. Insurance companies in their infinite wisdom would rather pay exorbitant hospital stays than to maintain health by paying for regular PT visits. So for the foreseeable future, I am having to pay for physical therapy out of my own pocket. applying for medicare to help with some of our high medical expenses, and just hoping that something will change in our healthcare system before it's too late for me and thousands of others who would benefit from physical therapy.
Effective January 1st, the recreational use of cannabis is legal in this state. I'm pleased that people in any kind of pain have other options besides abusing opioids or other deadly alternatives but I have some selfish concerns about marijuana being available to everyone of legal age. Because I have a gummy or other edible every night before bedtime to ease painful spasticity in my legs and rest more soundly, I was initially concerned that my local dispensary would be so packed that I would have to wait in long lines to get my own supplies. Fortunately I just found out that my dispensary will be dedicated to medical patients only which is a big relief but there are still so many unknowns with this rollout including cost, supply and demand. I'm in the process of renewing my Medical Cannabis Registry card which is an involved and costly undertaking so I really hope that I'm not hit with a more highly taxed or lower grade product when this new legislation becomes law in a few weeks.
The house is abuzz this morning with all the Thanksgiving prep for tomorrow's feast but as usual, I have to pace myself so that I'm not completely wiped out for the weekend. Fortunately our son came home yesterday to help my husband start getting everything ready for a house full of hungry relatives. Our daughter and her husband will be in later to start preparing their contribution to tomorrow's meal. Not only is it fun to have our grown children around the house, it's especially helpful that they both enjoy cooking since I have never enjoyed meal prep choosing instead to use my limited amount of energy on other activities. My main job will be directing traffic in the house, delegating and managing all the little details around hosting a large group. I realize that we enjoy an embarrassment of riches around here compared to many others who are less fortunate so I don't take this day for granted. I am truly thankful today and everyday for family, friendships and a life filled with love and laughter. Happy Thanksgiving everyone.
We went to visit one of our very dear friends in the hospital last night which prompted me to consider my own health issues. Although this serious disease plagues me on a daily basis, I have only been admitted to an actual hospital 2 times in over 23 years with the first time being just a few months after being initially diagnosed with MS when I contracted pneumonia. The second time I ended up in the hospital was from a severe reaction to Tysabri, one of the disease modifying drugs which attacked my hemoglobin levels. Although I'm a great patient after so many years of being poked and prodded, I do everything in my power to stay as healthy as possible so as to avoid both doctor visits and hospital stays. Although it's far from perfect, my health challenges are minor compared to so many others and for that I am eternally grateful.
I'm sitting here trying to live in the moment because life seems to be moving so fast right now. Our granddaughters have turned into preteens overnight it seems, our kids are all accomplished adults and the days appear to be flying by at a dizzyingly frenetic, pace. Today is the first time in weeks that I've even had a moment to read a good book, one of my very favorite activities. I'm trying to just slow down enough to appreciate all the blessings in my life especially those who take the time to read these blogs. Thank you for your love, support and encouragement as I share with you the daily challenges of living with MS. My sincere hope if that you too can slow down enough to really appreciate all the good in your life.
Every Wednesday I drive an hour away from my home for hippotherapy or therapeutic horseback riding at Equestrian Connection in Lake Forest. There are a ton of benefits to riding a horse for people with mobility issues including help with gait, balance, coordination, strength and cognition problems. I had a new instructor today who had received the message loud and clear to push me beyond my comfort level. Sometimes it takes a new set of eyes to really challenge the status quo because I've been riding for over 3 years now and am more than ready to try new skills. Today I got to take the horse on a fast trot off lead which initially frightened me a bit since it was the first time but I did it and am so proud of my small accomplishment. Sport of any kind can be a confidence booster, especially if you have a disability. Today has me wondering what other athletic endeavor I might be missing out on because of what I perceive are my limitations. I used to be a pretty decent skier when I was younger so that might be something to try again with modifications of course. The moral of this story is that we are all capable of more than we think possible regardless of our physical condition so live your life to the fullest.
The next time you walk into any public venue like a restaurant, bar or entertainment facility of any kind, notice how inaccessible it might be for someone with mobility issues. I think you might be surprised at how little attention is paid to the space between tables, locations of the restrooms, and even the amount of stairs dispersed everywhere. We had good friends in town this last weekend so we made the most of all that Chicago has to offer. We went to a small neighborhood bar that was so packed that even able bodied people struggled to maneuver around. The next night we all went to the Improv in Schaumburg, a fairly new club which was definitely built after the enactment of the Americans with Disabilities Act (ADA) which prohibits discrimination against people with disabilities in several areas including public spaces. Although there was an elevator to get up to the club, we had to stand in a long line for an extended time before being let in to see the show. Fortunately, our friends scrambled to find me a chair to sit in while we waited. I knew I would most likely have to go to the facilities at least once which were up some stairs and quite a distance from where we sat. Once again, our friend Mike helped me navigate through the crowds and get up the stairs when I had to go but I felt bad that he had to miss any of the performance. On Saturday night we ate at this fabulous Italian ristorante called Quartino where the tables were so packed in, it would have been impossible to get a wheelchair in there if I had needed that accommodation. After some great food and wine, we all decided to go around the corner to the Redhead Piano Bar where once again, my husband hustled to find me a seat so we could all listen to the music. It ended up being such a fun-filled few days that I feel extremely fortunate to have been a part of but I can't help but think how much more enjoyable it might have been for both myself and my friends and family had everything been even a fraction easier. It can be an eye-opening experience to witness how little we value people with disabilities as a society so please, when you get the chance, speak up for those of us with accessibility issues because someday it could be you who needs the help.
I consider myself an optimistic person but all my posturing and positivity feels pointless in the face of MS somedays. Just when I start feeling like, "Yes, I can do this because I'm stronger than this disease" I get yet another UTI or have a day where getting out of my pj's seems like a major undertaking. Fortunately I have a very short memory of the bad days, always finding a reason to stay hopeful that tomorrow will be better and it usually is. Today I am excited to get a new piece of medical equipment that will improve my mobility called a Bioness Functional Stimulation System. It's a cuff that wraps around my knee to activate the neuromuscular pathways necessary for a proper gait. I tried this device out many years ago but it was too cost prohibitive at the time. I am keeping my fingers and toes crossed that insurance will cover it this go around but if not, I'm hopeful that we'll find a way to get it anyway.
Ego takes everything personally but the power of awareness is the first step in acceptance of ourselves. I've been listening to a great podcast from the spiritual teacher Eckhart Tolle who's forcing me to really examine how I see myself in this world. My ego has me convinced that I am doing everything possible to live my best life for someone with MS to the point where I can become immediately defensive when well-meaning friends and family kindly suggest an alternative treatment option I have yet to try. Whenever this happens, my instinct is to internalize the comment because, of course, I feel like they couldn't possibly understand the pain I'm in. Tolle suggests that when this happens, we are in our "pain body" meaning the voice in our heads is informing our reality. This is in no way a suggestion that having MS is in our heads but instead that it's natural to believe the story we have always told ourselves to the point where we can close ourselves off to to new ideas. I am human but am always striving to be better so will make a commitment going forward to keep my ego in check by being more conscious, present and open to all this life has to offer.
Our daughter and her husband are moving back to the area from out of state so we'll have all our children close by again which makes this mom's heart sing. I've really missed having her around for all the family festivities although she tried to make it home as much as possible. My daughter is fearless facing whatever life throws at her with grace and determination so it came as a shock to me that the almost 4 years she's been away has been as hard on her as it has been on me. When she gave notice at the law firm she's currently working for it surprised even her how many tears sprung up when she expressed some deep-seated fears she's been carrying around about my precarious health situation. It dawned on me that because she's not around me on a day to day basis, she especially notices me getting progressively worse and that scares her to death. I can only imagine the fear and helplessness a close family member must feel when they see their loved one struggling knowing there's nothing they can do about it. I can deal with this disease but it really makes me angry to see my kids so frightened of what MS will do next but this awful disease will never take away the close family bond we share and for that I am eternally grateful
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.