I have a rare, congenital kidney disease called Medullary Sponge Kidney or MSK. Because my kidneys didn’t form correctly, they don’t filter properly and form massive kidney stones that I’m unable to pass on my own and require multiple surgeries to get rid of.
MSK is a progressive disease and even though I’ve changed my diet, my kidneys will continue to worsen as I age. The consensus from the medical field is that MSK is not painful. Nothing is further from the truth! MSK is extremely painful, and I suffer with chronic pain and will for the rest of my life. I’m 37 years old.
I also have renal colic and Nephrocalcinosis, which causes calcium to build up in my kidneys and harden. There is no way to get rid of the calcium without causing extensive, permanent damage to my kidneys.
I moved from Tennessee to Florida in March, 2011 and started a new job as an office manager. By June, I was in the ER with more kidney stones.
After struggling for over a year with MSK and not being able to find a doctor here in Floridato help me manage my symptoms with pain medication, I started advocating to raise awareness about MSK. Just when I started to make some headway in my efforts, Florida passed a series of laws restricting access to pain medications. These new laws are wreaking havoc on the lives of every chronic pain patient in the state, not to mention other states that are passing similar laws.
I was able to persuade the American Chronic Pain Association to list MSK on their website as a chronic pain disease, and I have an online petition going which describes in detail what it’s like to live with this disease, and to raise awareness and help promote new research and treatment options. I was recently asked to be a guest contributor on kidneystoners.org. This website was created by some of the top urologists in the country, and because of MSK patients writing to them, they updated the site to acknowledge pain with MSK. This is a huge step in the right direction for us.
I have also done several YouTube videos to tell my story and to advocate for the disease:
Since starting all of this, and after suffering tremendously for over a year, I was finally able to find a wonderful pain management doctor here in Florida to help me try to manage my symptoms. I started seeing him in April, 2012 and since being on medication my life has improved considerably. Before I was able to find help, I was bedridden. Now that I’m on a steady schedule of pain meds, I’m able to get out of bed and spend time with my kids. I still have a lot of pain and I can’t be too active, but the medication makes it bearable and I’m able to function.
Now that I’ve found this doctor, I’ve had extreme difficulties getting a pharmacy to fill his prescriptions. Because I couldn’t find anyone in my town to take me as a patient (a large part of that is because I don’t have insurance), I have to travel almost 30 miles away to see my doctor.
We all know with the policies that the pharmacies are implementing, that this puts me in a very awkward situation – my regular pharmacy won’t fill it because the doctor is too far away, and the pharmacies in the town I travel to don’t want to fill it because it’s a narcotic and I don’t reside in the area.
Luckily, I was finally able to find a pharmacy in that town, but they won’t fill my narcotic prescription without having a non-narcotic prescription to go with it. Another hoop to jump through! I swear, sometimes I think they are all trying to get chronic pain patients to commit suicide, just so they don’t have to deal with us anymore!
There is no common sense involved with these laws AT ALL!
I am trying to reach more MSK patients worldwide, who are suffering and are not aware of the resources that are available. I have a specific goal of reaching MSK patients in Florida who would be willing to participate in my USF Tampa Project. I’m looking for patients who would be willing to participate in a clinical trial if I can convince USF to start one. I’ve been working on this project for a little over 8 months, and have quite a bit of information compiled.
I’m also a very active member of a closed MSK support group on Facebook which has 275 members and is growing every day. If you are a MSK patient and would like to connect with other MSKers that are willing to offer advice and support, please request to join.
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