Advocating for MSK

Welcome to KidneyStoners.org and my guest post from an medullary sponge kidney patients’ Advocate’s perspective. When I was asked to be a contributor to this site, I jumped on the chance. It isn’t everyday that MSKers are provided the opportunity to talk about their experiences in a public forum like this, especially one created by doctors. It was just too good to pass up, and I am very grateful to be here.

Let me tell you about myself and what led me to become an advocate for MSK patients worldwide, and what I’ve accomplished so far in this role. My name is Mary Maston, and I’m a 37 year old wife and mother of 3 wonderful children – ages 17, 13, and 6. I’ve had many jobs throughout my life – I’ve been a cashier and a waitress, I was a pharmacy technician for a national chain of retail stores for several years (back before you had to be licensed), I worked as a Laminator and Quality Control Supervisor for Yamaha and Toyota boat manufacturers, I was the Commercial Customer Service Rep and Assistant to the Commercial Sales Manager for a Fortune 500 company, where I managed accounts totaling roughly $4M in revenue a year, I was an Accounts Payables clerk for Skier’s Choice, who manufactures Supra and Moomba boats, I was the Administrative Assistant to the President, VP, Treasurer, HR Manager, and Sales Manager at a major custom injection molding manufacturer who makes products for GM and Electrolux, and most recently I was the Office Manager for a self storage facility with 400+ units.

To say that I have worked with people and have had to acquire excellent customer relations skills is an understatement. I can’t help but feel that all of that experience was necessary to prepare me for my biggest challenge yet – to advocate for MSK patients. This, by far has been the most difficult thing I have ever taken on, but it’s my hope that it will be one of the most rewarding.

I’ve had several episodes with stones over the years. I got the diagnosis of MSK after a particularly serious bout of stones in 2008. During that time, I had a total of 5 surgeries in a month’s time, and ended up in the hospital for a week with massive internal bleeding on my left kidney. I have been in constant pain since then. I’ve made a YouTube video in which I tell my story: http://www.youtube.com/watch?v=khXTaknWl3g

My most recent bout of stones started in May 2011, and this was another very difficult time for me, with 4 surgeries and 6 ER visits in a few month’s time. It was during this time that I decided I’d better find out more about MSK. The stones were coming every couple of years now, and until this time I really had no interest in learning more about MSK. I was also still trying to work during this time, but that became increasingly difficult and I finally had to resign my position and filed for disability. I am currently in the appeals process on that.

The older I get, the more my MSK progresses, and it takes me longer and longer to recover from multiple surgeries back to back. It’s now June, 2012 and I still haven’t fully recovered.

In starting my research, one thing kept jumping up and smacking me in the face everywhere I turned – patients all over the world were having EXTREME difficulties in getting their doctors to acknowledge pain with MSK and treating their symptoms. I read story after story of patients begging for help, for understanding, for compassion. Story after story of patients being accused of seeking powerful painkillers and being drug addicts. The desperation they were feeling was overwhelming, and sometimes I would just sit and cry for hours because of the misery these patients were in.

I knew from my own personal experience that what these patients were feeling is real and true. I too am in chronic pain ALL of the time, it never stops. I thought, surely there is some medical research out there somewhere that validates what all of these patients and I myself were going through. No matter how hard I looked, I was unable to find it. I spent months researching MSK, went to every website imaginable, and couldn’t find even one that acknowledged pain with MSK.

Then I found a Facebook group with other MSK patients. I joined, and started talking to them and reading their stories. Actually talking to other patients who were going through the same thing I was helped, but I felt like I should be doing more. That’s when I started writing to all of the major kidney organizations. I decided to write to the American Chronic Pain Association, and that’s when doors started to open. They agreed to list MSK on their website as a chronic pain disease. They had to go with the current available research though, which states MSK is not painful, but thankfully they listed it because of patient testimony.

Then, there was a segment in “The Huffington Post” by Mr. Radley Balko, Senior Writer and Investigative Reporter, entitled “The War Over Prescription Painkillers.” In this article, Mr. Balko talks about chronic pain patients facing extreme difficulties in getting adequate pain control because of stiff government regulations. He talks about Florida specifically, which is where I currently reside. At the end of the article, he asked chronic pain patients for their stories for his next segment. I thought what the heck, I’ll write to him.

I was totally shocked when my phone rang a week or so later, and it was Mr. Balko. He said he wanted to use my story for his next segment! The Huffington Post is a major media source and I was thrilled. As far as I know, this is the first time MSK has ever been mentioned in a major media outlet. You can read the article here: http://www.huffingtonpost.com/radley-balko/us-painkillers-abuse_b_1263565.html

During this time, I was looking for current clinical trials on MSK. Of course, I didn’t find any. In that research, I learned that USF Tampa does clinical trials and had several going on. I decided that I would see if I could convince them to start one on MSK patients – to figure out WHY we are in such pain all the time when all of the current medical research says we shouldn’t be. I pitched my idea to the Facebook group, and several of them said they would be willing to participate. Then came the petition.

The one thing that rang true throughout the research I was doing, was that MSK patients are few in number and are scattered all over the globe. Add the fact that there isn’t much research out there on MSK, and what is out there is outdated and inaccurate, and you have the recipe for the perfect storm. I thought if I could get an online petition going and promote it correctly, not only would we find more MSK patients that we didn’t know were out there, but maybe hearing from all of us in one collective source would help to convince doctors of the need for further research. MSK patients need to come together as One Voice; that is what the petition is doing.

So far, it’s working. In the beginning I set the target goal of 500 signatures, and as we speak it has 485 signatures. I would love to not only meet, but exceed that goal – to find other MSK patients who may not know about the current resources that are available. This is the link to the petition: http://www.ipetitions.com/petition/medullary-sponge-kidney-msk-patients-unite-one/

I have several other projects in the works that I plan on unveiling in the upcoming months. All of these projects are for the purpose of promoting MSK, and most importantly, advocating for MSK patients so that new research WILL be done and we can all manage our symptoms better. I look forward to sharing these with you – to giving you updated, accurate information and resources in your battle with MSK.

Mary Maston
MSK Advocate; USF Tampa Project Facilitator;
KidneyStoners.org contributor

 

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18 Responses to Advocating for MSK

  1. Jennifer Gregory says:

    After suffering from severe lower back pain the past two weeks I went to my chiropractor-which sometimes help stones past after adjustment-I went to my urologist. He did a KUB Cray but didn’t find any stones obstructing. He said keep drinking my water, take PAIN pills, and see what happens. Thursday I was in such unmanageable pain even with taking disposals MY husband had to take me to DR. They put in an IV gave me Toradol-did not help. They then did CT scan & saw several stones in left ureter, gave me morphine in IF & called my doctor. He scheduled surgery for Monday. I passes most of the stones including a very sharp 5mm that cut my insides. My doctor scoped both dieters to make sure no other stones were there & now I am on strong antibiotics & pain pills & will miss work for two more days. I am at a loss how to deal with the pain & everyday stress from this disease. IT IS HORRIBLE. AT 62 I feel this happens with more frequency & wonder how much stress contributes to setting off another bout of stone problems. I have done nothing but cry for the past several days due to PAIN & utter disparity.

    • Jennifer Gregory says:

      Editing my reply: IV should be there plus dilaudids is the pain pill Dr makes me keep on hand. He scoped both URETERS-Not dieters! Predictive text always gets me & right now I should be resting. Good night

  2. Michelle Dawn says:

    I appreciate this article so much! It also feels good (although at the same time of course I feel bad for anyone else dealing with this or any other health issue) to know there are others out there. It can feel really sucky (yes that’s the word I wanted to use) to know you have this rare kidney problem, but it feels very supportive and reassuring to know there are others out there and most of all, others who take it seriously and are working to find out more and hopefully help those of us who are dealing with it. I wrote a piece on my own personal struggle

    http://michelledawnom.wordpress.com/2013/06/19/living-with-msk/

    and included a link to this site because I feel it is one of the best out there, including this particular article. Thanks again and thanks to everyone else for sharing their stories and advice :)

  3. Mary Maston says:

    Val, thank you for your comment about the MSK Online Project. I have looked at the website, but have been unable to find any information about the creators of the site. It looks like the site may still be in the early stages of being built. Many of the MSKers I represent as an Advocate are willing to participate in anything that will result in more research for MSK, but most MSKers are reluctant to provide personal information without knowing where the information is going. I tried the “Contact” tab, but that is a non-functioning tab at this time. Can you possibly shed some light on this for me?

    Thanks,

    Mary Maston
    MSK Advocate; USF Tampa Project Facilitator;
    American News Report columnist
    http://www.americannewsreport.com

    • Val says:

      Thanks for the prompt response Mary,

      Yes, you are right, the website is in the very early stages. It is a website I have set up- And I only uploaded it day before yesterday. My brain is still working our some of the content.

      Let me give you some background on me:

      I have MSK and am simply stunned by the lack of information about it, and even more so by the conflicting information out there. I simply can’t find the answers I am looking for- which must be the case for any MSK patients out there who go looking for any really helpful information.

      After finding a number of your posts, and the posts of other MSK sufferers on support sites, I realized that the best source of information on MSK would be MSK sufferers.

      If hundreds of MSK patients pooled their information so that all of their medical symptoms, treatments, what works and what doesn’t work were in one set of statistical data, it would be extremely helpful not only to patients, but potentially doctors as well. It is research that hasn’t been done- and we have the power and ability to do it ourselves because of the magic of the internet.

      I have already run a project similar to this in that, I set up a website that provided information about a consumer fraud scam in Canada. As victims of the scam found the site, they would contribute information and, in short order, a much clearer picture emerged from the collective information. The end result of it all was that the scam was shut down, and government investigators use(d) my site to research the criminals and how the whole fraud worked. It was a huge operation- anyway.

      I don’t see any reason the same idea wouldn’t work with MSK symptoms.

      I understand the concern people have for privacy- the form on the site does not require people identify themselves or provide their email unless they choose to. People can fill in the form as Barney Rubble if they like, because mining personal data is not the objective- just gathering symptoms etc. so that we can see what we all have in common, and what we don’t. I think it could shine a huge light on things for all of us.

      If we get 300 MSK patients and 94% of them report chronic pain, or insomnia, or whatever – that will be significant to a doctor. Done right, it could become a source of information for the medical community.

      A similar project was done for another condition (I can’t remember now- I will find that information) basically, a guy whose brother was suffering from a horrible disease (which the medical community knew little about) set up a website and invited others with the same condition to report in the same way. They had tremendous success and discovered tones about the disease that the medical community didn’t know. Of course, people in the medical and scientific fields initially said “you can’t do that, it isn’t scientific” – but so what? If meaningful information comes from it that helps people- that is what matters.

      Anyway- I would really like to work in cooperation with you, or get any advice, assistance or anything else you might be able to provide toward making this project go. It is less than three days old. There are still some tweaks that have to be made to the website (feel free to make suggestions if you feel so inclined)

      Also- (I feel I should mention) Val is not my real name. I try to avoid posting my real name in comment boxes on line.

      I would love to email with you further about this idea and I am hoping you see the same potential for it that I do.

      Hoping to hear back via email: info@mskonloineproject.org

      “Val”

    • JENNIFER GREGORY says:

      I was happy to read your thoughts & experiences with MSK. I have had this disease for 27 years since I was 35. I have never been in such excruciating pain & have found my attacks more frequent. I have had lithotripsy approximately 20 times, laser, basket removel etc. It is so difficult to work sometimes & if someone has never experienced this they have no clue of the pain, the stress, and anxiety of wondering when the next one will fall or if it will pass or if yet another surgery will be needed. I am lucky to have a wonderful doctor who gives me PAIN meds but I live in Florida & never know how this will affect future prescriptions. Unlike some posts I have read my doctor is aware of the horrible pain I suffer. I have also passed about 100 stones-1-4 mm. My biggest which required surgery was 12 x 12 mm. Mary I tried to sign the petition but it said the site was temporarily down. I lost 2 weeks of work last April from a huge stone that half crowned my ureter & other half embedded. Couldn’t sit up for a week more than 10 min. At 62 I am having anxiety stress & bouts of depression as doctor says I will have this till I die:(

    • JENNIFER GREGORY says:

      I was happy to read your thoughts & experiences with MSK. I have had this disease for 27 years since I was 35. I have never been in such excruciating pain & have found my attacks more frequent. I have had lithotripsy approximately 20 times, laser, basket removel etc. It is so difficult to work sometimes & if someone has never experienced this they have no clue of the pain, the stress, and anxiety of wondering when the next one will fall or if it will pass or if yet another surgery will be needed. I am lucky to have a wonderful doctor who gives me PAIN meds but I live in Florida & never know how this will affect future prescriptions. Unlike some posts I have read my doctor is aware of the horrible pain I suffer. I have also passed about 100 stones-1-4 mm. My biggest which required surgery was 12 x 12 mm. Mary I tried to sign the petition but it said the site was temporarily down. I lost 2 weeks of work last April from a huge stone that half crowned my ureter & other half embedded. Couldn’t sit up for a week more than 10 min.

  4. Val says:

    NEW for MSK patients: The MSK Online Project is a new website developed specifically to collect, compile and analyze the symptoms and experiences of MSK patients. The goal of the site is to utilize the collective information of as many MSK sufferers as possible in hopes of establishing meaningful and helpful information for patients and doctors.

    Please join the project!

    It is free to participate
    You can submit your data anonymously
    The results of the project will be published and made available to anyone who wants it at no cost.

    • JENNIFER GREGORY says:

      Val what is the link to this. We MSK sufferers need the support of fellow friends with this disease. IT IS NOT IN OUR HEADS!! My dad & my aunt-dad’s sister boat lost a kidney to cancer & this also worries me as how do we know how much damage is done to our kidneys. Both of my kidneys are filled with stones & my xrays look like the milky way.

  5. fullofstones says:

    I could burst into tears reading the stuff on this site finally people who understand what i am going through! How do i find this facebook group?

    • Mary Maston says:

      Here’s the link to the group: https://www.facebook.com/#!/groups/Spongelife/. If the link doesn’t work by copying & pasting it into your browser, when you log onto Facebook, go to the “search” box at the top of your page. Type in Medullary Sponge Kidney, and several groups will come up. Medullary Sponge Kidney (MSK) Patients Unite is the group I started to promote the petition. This is an “open” group, which means that anyone who searches for MSK on Facebook can see what’s posted there, so please don’t post any info here that you want to be kept private (medical history, treatments, meds you are taking, etc). The “closed” group is called Medullary Sponge Kidney (MSK), and we currently have 250 members, with that number growing every single day. This is where we talk about our daily struggles & everything related to MSK. You will have to request to join both groups, but both Kayla and I check requests on a regular basis, so it won’t take long. I’m looking forward to talking to you!

      Mary Maston
      MSK Advocate; USF Tampa Project Facilitator;
      KidneyStoners.org contributor

  6. Marilyn Gonzalez-Bushey says:

    Thank you for creating awareness. I was diagnosed with MSK recently. I am only 28yrs old. The pain can be so awful at times and no one seems to believe is real. Please continue to spread the word. We appreciate everything you are doing!

  7. Barbara says:

    Finally a voice for those that suffer in silence. The complications that occur with MSK are poorly understood by the medical community and more research for this disease is necessary.

    • Jennifer Gregory says:

      I agree. I just read an article written in our newspapers that stated most kidney stones can be treated by change of diet & more fluids. He obviously had no clue of MSK or the pain we deal with. No change of diet or extradition intake can fix this.

  8. Cheryl says:

    Your efforts to get awareness & recognition for MSK will not go in vain – keep up the good fight, Mary, you are a bright shining light and we are all following directly behind you keeping you strong, as you keep us strong too :)

  9. Hollie says:

    Thank you Mary WE NEED ALL THE HELP WE CAN GET! Day after day new people come along and they find us on FB in the closed group. When they hear how we live, they feel validated and know there is a place to come where you are accepted and not judged. WE are trying to live the best we can with pain. There has to be something better for us other than pain meds and surgeries to remove stone. YES IT IS IN PREVENTION FOR SURE! Thank you for your courage Mary!

  10. Nancy says:

    Mary, as a fellow MSK patient with severe pain, I appreciate all you have done to raise awareness. Great article.

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