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You are invited to Letters to the MonSter

Well, the sun is shining at last and it appears that spring is sincerely here and hinting at summer weather.    That means I need a summer project; hopefully one that I can complete. With two young adult books   in various levels of completion, you will surely tells me how ridiculous I am to start yet another writing project. but, inspiration has no rules, right?
           The entire month of March MS Awareness Month led to so many
awesomeavenues of expressions, fueling my need to share and learn with 
fellow MS Warriors. So, let's hare. Let's learn. In Letters to the MonSter, 
my goal is to allow fellow Warriors to vent, scream, rant, and exorcise the  MonSter out of our lives. Let's unite in this project to erase multiple sclerosis from our lives. As Leslie Hillburn stated in the preface to my last tome to this disease, "...the ONLY place you will get any support and understanding in dealing with me (MS) is with Other People wi…
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WV MS Summit 2018: My report

On Saturday, May 5, 2018, I attended my first ever MS Summit. Held at beautiful Stonewall Jackson Resort, West Virginia, the day's events further invigorated my need to learn more about my disease. 

Between the multiple Warriors, speakers, doctors, and pharmaceutical  reps in attendance, Icame away feeling a bit more positive about the care I receive.  

And the vocabulary lesson! Wow! 

oligoclonal bands

Yep, with these terms I am now an MS specialist. Of course, I first need to know exactly what they all mean; but it is exhilarating to be included  in a professional discussion concerning MS.

Let's get to the part that I truly did understand.

                2018 WV Multiple Sclerosis Summit Agenda

I. Eric Dunithan (nurse) and Ericka Blackwell (physician's assistant), both from WVU medicine, addressed how to make the most of a neurological appointment. 

The Take-Away:

 Making a list of points to discuss with the doctor…

Disability and MS: Help!

It wasn't my idea to apply for disability, but when the issue was presented to me, I decided to give a shot. Expenses are pilling up and with soon to be college bound son getting excited about the next chapter in his life, the idea of a little additional income is highly attractive. So, Ihave taken the plunge and am fully engulfed in the application process. 

Talk about an exercise in patience and endurance. So far I have filled out two application packets and am on the third, visited the nearest SS Office twice, been interviewed via phone three times, and just about on my last nerve as to the ridiculous and asinine procedure that this process requires. I believe this a sure fire way to discourage applicants in the first place but that carrot has been dangled and this bunny is not backing off.

I understand the need for careful  consideration of any applicant for seemingly "free" funds and sincerely appreciate that this monetary assistance be awarded to those individuals ge…

A Sea of Orange Hope

With a forecast for rain and cool temperatures, many felt the 2018 Walk for MS might be a sloppy mess; but when I arrives in Morgantown, West Virginia, I found an optimistic, celebratory atmosphere that no storm could dampen. Clouds dispersed and skies cleared, knowing that the heavens  could not compete with the storm happening on the ground at the  Waterfront.

The true champions had arrived and their name was Warrior.

Tents were erected, tables arranged, team shirt distributed, books stacked, (I got to share I Have MS. What's Your super Power? !!!!)

acknowledgements made, participants in place, and the walk began,

with Team Tiffany in the lead. My new MS friend, Tiffany Albright, is an inspiration. she single-handedly recruited an amazing team of walkers that outnumbered any other congregation in attendance. Her numbers were amazing in monetary contributions and the enthusiasm of her teammates was more than inspiring. 

Event though I did not personally join the walkers, my day was fu…

Physical Pain (Constochondritis) and MS

I don't know about you, but I am constantly debating the difference between the MonSter and the side effects of life. When do we stop blaming multiple sclerosis for all of our aches and pains? Or, do we? On May 5, 2018, a group of medical professionals will met at Stonewall Jackson Resort, WV, for an all-day MS Summit. I plan to be there with ears wide open when I  pose this burning question to an audience of MS specialists, one with whom I have my first appointment early in the fall. (She doesn't now it yet, but I have done my research and I am SO excited to finally meet with someone who specializes in the workings of the MonSter.)  I you are interested in attending, evidently all it takes is a quick e-mail including your name and contact information : WVMSSUMMIT2018@OUTLOOK.COM. Remember, anytime you hear of such an event, even from pharmaceutical companies, yo do NOT need to suffer from MS in order to attend. These are informational sessions and open to the public.  Planni…

MS Weekend Reading

Unfortunately, the Lemtrada informational session scheduled in my area was cancelled earlier this week. It couldn't be helped. the cancellation was not planned nor expected. Yes, I was disappointed to change my own plans and, yes, I an sorry not to learn more first hand knowledge of this treatment for MS. I am sorry that this cancellation was the result of sad news from the presenter. There will  be another opportunity. Life goes on. We do what we have to do.

That's basically the attitude adopted by any and all MS Warriors. This cancellation is typical in a day with the MonSter. One day we are feeling great and the next our muscles cant't remember how to function. I typically roll pretty comfortably with change wince my diagnosis. I don't let plan changes freak me out. Too bad this attitude cannot transfer over the minds of my family members.

That's the problem with being the MOM, the matriarch, the ruler of the household domain. They won't admit it, but without …

Still searching for the perfect MS treatment: This week Lemtrada

For the first time since diagnosis, I am being included in pharmaceutical informational events. Initially I was rather apprehensive, but found it silly not to attend one very close i proximity to me. Not only did I glean a good bit of information from the presentation, I also made some important MS Warrior contacts.  This evening I plan to travel to Morgantown in order to hear about the positive effects of LEMTRADA, an MS infusion unfamiliar to me. I never considered an infusion as part of my  disease treatment until a friend told me about another, newer drug that he read about in a major news paper. So, if an Ocrevus event pops up somewhere close, I will consider attending that lecture as well. During my most recent doctor visit, it was explained to me that of the three medical treatment for multiple sclerosis, infusion was the highest on the list at this time. That makes sense, but evidently is the most expensive and time-invasive method (It requires an entire day to complete an infus…