November is RSD Awareness Month
The Cost of RSD
I wrote this weeks ago and I'm just having a hard time with posting it, it is actually giving me anxiety. With it being RSD Awareness Month I wanted to do a few blogs on the subject but when I read it, it makes me feel a little sick. You don't know me so you don't know I have always been a very strong person that always finds a way. I raised my daughter on my own, I've worked 2 jobs to get her what she needs and I always picked myself back up. When I read this I realize it paints a different picture and it makes me realize just how much RSD has changed who I am. The truth is I am still that fighter it's why I write this blog because staying home, unable to work and just letting life pass me by is not in my nature. Ok now that I got that out on with the reason I wrote this post, the hidden cost involved with getting sick:
There are the obvious issues with having RSD that affect my body but there are also just as devistating finacial issues that we don't talk about enough. I have health insurance, at the time I was insured through my husbands employeer, workers comp and now medicare but I still have managed to rack up over 40k in out of pocket medical expenses just on the primary issue of RSD. My doctor has discussed trying ketamine infusions which would involve travel, housing becaue its not approved in my state so that cost would be astronomical probably not covered by insurance. This doesn't include secondary medical issues from high cholestrol to cataracts all which were brought on by the constant strain my body is in due to RSD and all will add to the cost I have already occured . There are other costs from dietary changes to transportation to doctor visits that are not included in that number. We had good insurance, better then the average but getting sick is very costly and insurance has caps on how much they will pay so in my case thank god for medicare that is now helping to pick up those costs. I give up certain medications because I just can't pay for them, I have a daughter, she has needs and like most parents those needs are put ahead of mine.
I'm not alone with this dilemma there are cancer patients that are having to choose between chemo or being able to feed their children and keep a roof over their heads. I have a friend who's husband died from cancer and she told me that the copay for medicine he needed was 10k! Eventually she was able to get his medication reduces but it wasn't easy. I go to these IME (Independent Medical Exams) they question why I'm not in physical therapy every week, seeing a neurologist and a pain psychologist with this disapproving look. My answer is always the same, I can't afford that. Insurance only allows a certain number of physical therapy appointments a year at an out of pocket cost of 60.00 plus I would need a taxi to get there and its the same deal with a pain psychologist. I have not worked in almost 5 years and right now I am spending over 350.00 a month on medication and my pain management doctor. I have to tell you I always get angry when they say this, my response is your insurer won't pay for any of that but hey tell them they have to see how far you get with that. There are other 'hidden' cost to becoming sick that people rarely think of like help with daily life.
So far I have not hired anyone but as soon as this all gets resolved I will need to look into hiring a maid or someone to help run errands to take some pressure off of my husband and daughter. My house is just too big and my body is just too weak to keep up with it and we are living in a constant state of chaos. Between my husband and myself we have 3 teenage girls, 2 dogs, 5 bathrooms, 6 bedrooms, great room, den, office, dining room/piano room and a full basement there is no possible way I can manage all of that. I can put things into the washer but I can not remove them so laundry is an issue so we send a lot of it out and since I don't drive it is a pick up service so more money. Our yard in total is 1/4 acre or more with 3 decks and a patio that is in need of a major overhaul. Like some of my treatment and medication it has gone to the way side which I am sure drives my neighbors insane but we can only do what we can. Since I don't typically drive as well as the disability in my arms grocery shopping has to be done on Saturday's so my husband can take me and do things like push the cart as well as reaching things that are too high for me. I'm 5'11" but my shoulders are, for a better term, frozen and make reaching extremely difficult. My 'personal care' costs have changed including cutting my hair off to make it managable for me to take care of.
Between my 'life style' change and the affects of RSD I have had to over haul my wardrobe. Because of skin sensitivity that is extremely painful I have had to get rid of a lot of my clothes for softer fabrics and larger sizes to be able to handle the swelling which comes and goes but can swell to epic purportions. I have also had to go up a full size on shoes for swelling and heels, although I try, have become a thing of the past. Which leads to another cost, walking is becoming more difficult and I am missing events because I just can't walk. It's not an everyday occurance but it is happening enough to make have to decide wheelchair or miss out on things I want to do. I have not been able to wear my wedding ring since July 2011 due to swelling which is upsetting to me but more so to my husband. Since I use to work my wardrobe mainly consisted of work appropriate clothes, I had very little in the way of casual clothes and sweats are not in vocabularly so I needed to build a wardrobe that worked for my current life style.
I realize the importance of physical therapy and at first I had a gym membership but as the disease progressed it became more difficult to get to the gym. I realized that was over when I was in the locker room trying to change and with my shoulders I ended up getting stuck in my sports bra in a panic not knowing what to do until finally someone helped me, seriously that happened. As an ex runner I knew I needed to keep moving so I broke down and bought a treadmill in 2012 another expense over the 40k. I have issues with sleeping and have a total of 12 pillows I use to reposition myself several times a night so eventually I will need an adjustable bed, big cost. I do a lot of research and with that have made serious changes in my diet, the products we use in the house and different supplements all of which are expensive. We have to avoid products that might cause an overreaction in my CNS (central nervous system) which includes preservatives in food, cleaning products, toiletries and pest control all of which cost more money. Staying home unable to drive and not having a lot of money is BORING!
There are so many complications with getting sick that you just can't fully understand unless it happens to you which I hope doesn't, I wish I didn't know. The obvious issues of just being sick and those physical effects are just a part of the problem. Financially being sick can destroy you and I am luckier then most, I have managed to stay in my home and go on occasional vacations. There are the hidden cost in being sick like housework and personal care that you never think about but are a real issues. The cost of human connection and self worth from being a shut in especially if you are as socially driven as me can be devastating. The guilt is all consuming, guilt because the house is a mess, guilt because I can't be as involved as they need me to be, guilt because I am not bringing in money but need so much just to minimally control the symptoms of my disease, guilt because I can't play basketball with my daughter or show up to an event I RSVP'd to at the last minute worrying that they won't invite me again. Loss, loss of who I am, loss of my independence, loss of family and friends. Opening my mailbox to find yet another medical bill to add to my overflowing file boxes and knowing this case is far from being over so the bills will keep coming with no money coming in. Sometimes I feel like I am drowning in this sea of shit and there is no way out. These are just some of the costs of being sick that no one ever talks about.
It is estimated that the average yearly cost of just managing the symptoms, no other treatments just medication is approximately 20k a year. This estimate does not include secondary conditions caused by having RSD nor does it include in home help with care of the RSD survivor. It does not include therapy or pain psychologist just the absolute minimal care.
There are other costs that are emotional, that effect not just the person with RSD but the caretakers. The cost of my daughter not having the mother she needs or my husband the wife he deserves but that's another story for another time.
I contracted RSD/CRPS from a shoulder injury at work, August 2010, that resulted in a surgery in July of 2011.
I was diagnosed with RSD in 1/2012, I was 41 at the time.
RSD is also known as the Suicide Disease, don't worry I'm too stubburn for that route.
There is no cure for RSD.
Although not common RSD can spread to other limbs and as my doctor says I am one of the lucky ones, its spreading.