Category Archives: MS fatigue

Forty & Ten: Midlife Crisis Averted

Earning this felt like an accomplishment.
Earning this felt like an accomplishment.

Nobody likes to fail. Our human minds are set up to remember our failures, so why would we do something at which we are unlikely to succeed?

The better question is how are we to really know we have done all that we can if we never push ourselves to the point of failure? The problem with failure is the ease with which we see it as an end rather than a measuring stick used for future endeavors to expand our abilities. It is OK to fail so long as we have done all we could at the time.

I still love Samuel Beckett’s “Ever Tried. Ever failed. No matter. Try again. Fail Again. Fail Better.”

It is with this mindset that I set out on my attempt to run my second half marathon on a beautiful June Saturday morning at Yellowstone. I have to admit, I had many doubts about my ability to complete the race. I had not run that far in two and a half years. I had a stomach virus hit me very hard on Thursday night leaving me dealing with having shit the bed four times until finally, there was just nothing left. I had not had an MS treatment for 2 months as I continued through the washout period needed to switch meds. Finally there were the two reasons my wife gifted me with the trip in the first place: I turned forty and have had MS for ten years.

As I sat there Friday morning thinking about this list of reasons to fail, I realized these are excuses, and we all have excuses. The question is whether those should stop me from trying. I showered for the fourth time that night, drank some more water and went to bed wondering if my stomach would keep me from an item on my bucket list, seeing Old Faithful. Thankfully, my body did what it normally does to viruses; hit it with a tactical nuke. After a dreadful evening, I went downstairs and bought a Gatorade to be followed by 2 more in short order. Then I went with T, my brother in law, to continue sight seeing in Yellowstone for a third day where we got to see Old Faithful along with many of the other cool geysers, springs and pools.

Castle Geyser just keeps going and going for 25 min.  We saw it before and after Old Faithful.  I thought about it while running.
Castle Geyser just keeps going and going for 25 min. We saw it before and after Old Faithful. I thought about it while running.

On day four of our trip, I got up and ran the half marathon. I worried about whether I would be able to finish the 13-mile run at altitudes of 6,000 feet to 6,850 feet, especially when I fell twice in mile 10 because foot drop and a long run over very uneven terrain can do that to me. Still, I finished in 906th place. When I shared the results with my kids, they started to commiserate as if it was sad so many people were faster than I. I told them over 2,700 people finished the race, and I was in the top third of all finishers. I am anything but disappointed with the finish. I meant it when I started, and I mean it now. The challenge was for me to finish, not to finish faster than anyone else. Two hours and twenty-four minutes after I crossed the start line, I succeeded. It was a beautiful trip, and a great reminder that 40 & 10 are just numbers. They are just another measurement of time, and not the most meaningful ones at that.

Thank you T and J for a wonderful trip complete with great memories. I needed the break from reality, and my self esteem needed the half marathon attempt.

Thank you T for showing me around.  I would never have seen as much without you.
Thank you T for showing me around. I would never have seen as much without you.

I got a lot of great photos on the trip, and I will create a page with just those in the next few days.

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Unneeded Barriers to Treatment

Super Trooper A
Super Trooper A

One of the common frustrations with our current medical system exists on the access to treatment front.  A had an endoscopy & colonoscopy on Monday. The hospital required a copy of her new birth certificate and the legal order of adoption in order for my wife to authorize the procedure. They would never require this of a child in their birth parents’ care. What happens to adoptees being equal to others? What would have happened if we could not provide both? Would they have denied the surgery?

For me, this comes back to the question of access for services. Has there been a rash of cases where people pick a random kid up off the street, make them go through the bowel clean out process, and take them in for a colonoscopy & endoscopy? I know there are some seriously mentally ill people in the world, but this crazy would need a whole new word to describe it.

I question the reason and the logic for the imposition of this barrier to treatment.

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Example 2 of a Barrier to Treatment:

Last week, I wrote my neurologist to say I was going to run out of adderall before my visit later this month. He sent me a script. Woohoo.

On Thursday, I found out I needed prior authorization again. His office called it in the same day. Then on Tuesday, I got a letter from my insurance company saying the prior authorization was denied because use of adderall is experimental for MS patients. After calling and going through menu hell, transfer hell and finally menu transfer hell for an hour, I was told to write a letter for reconsideration and mail it or fax it. They then had 30 days to respond. How can one get through these types of barriers quicker than 30 days? With 3 days worth of meds left, I wrote and faxed this because I did not have 30 days to wait (leaving off header and sign off junk):

I have taken Adderall XR since January 2010 to treat both my ADD and fatigue resulting from my Multiple Sclerosis. It has allowed me to continue to work a full time job managing a multi-year project.

Suddenly considering this drug experimental seems bizarre. As I look at patientslikeme.com, it appears I am not alone taking adderallXR for symptoms resulting from MS. There is a more than statistically significant rate of success for MS patients using it to treat fatigue, cognitive impairment and brain fog. This web page contains the results of 318 MS patients taking it. https://www.patientslikeme.com/treatments/show/3597#overview

Taking this drug has allowed me to work a full time job (no given with MS), go home to help raise three medically fragile, adopted and fostered children, and write as hobby which has lead me to a position on the American Board of Internal Medicine and the Team of Advisors for research at patientslikeme.com. Having this medication suddenly denied the week I need it refilled seems ridiculously bad timing.

Please reconsider this designation and let me know so I can fill the prescription.

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It was approved the next morning: Barrier Cleared.

What I find daunting is the prospect of going through the phone system after running out of medicine to help with maintaining attention. At that point, a patient who needs the drug would be denied simply because they need the drug. Thankfully, I had two days worth of medication left to allow me patience to go through phone system and write a letter for reconsideration. It just seems odd to deny the doctors as they put in for prior approval and requiring the request come from the patient. I am all for empowering the patients, but I also recognize our limits in knowing what is needed to best treat our medical conditions.

My neurologist wrote them too after it was approved to give them research to show the efficacy of adderall for treating MS symptoms.

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