Where Do I Go From Here?

By JD

Author, Reporter-Journalist

My motto for today will be, “lead, follow or just get the hell out of my way”!   Another day I am reminded by someone of my limitations in that all so familiar and convenient phrase…

“You’re doing too much, you should rest”.

“You have multiple medical conditions, and it’s time to consider retiring”.

That is how my wonderful and adventurous week will start.   Of course I have heard those phrases more times than I care to count or acknowledge over the last several years, and ignored each one as they spewed from the lips of people who never took into consideration what I want out of life.  It is MY life after all, and should I not be the one to decide when it is time to secede?

My doctor was quite frank when he told me that my MS has progressed rapidly in the last 3 months.  Damn him for bursting my bubble after making me have another MRI to remind me I was not born perfect! I was quite happy in my state of delusion that I was without error.

If one were to troll my social media accounts and you will think I am a picture perfect image of a healthy and active adult.  Looks can be deceiving.  Or perhaps, as my primary care physician and counselor both seem to concur… I am in denial.

Perhaps I am in a form of denial.  I have so many things I want to experience, accomplish, or do that I want to do them when I feel well enough to enjoy it.  I want to be as energetic on the days my body allows me to, so I can enjoy the memories of that experience, when my body allows me only the privilege of thinking and not doing.  If it means the one day I enjoy something fun and strenuous, and I have to stay in bed for a few days afterwards, then that is my choice, let me have it.

How do I explain to myself and to those I love when the days get harder and I just can’t do as much as I used to anymore?  It is hard enough coping with those people I consider true friends seem to distance themselves from me the moment my health took a southward approach.

Media outlets are stewing with hundreds of new research results and medications to slow the progression of MS, and then the three or more pages of research and side effects that are numerous and some deadly directly follow.  Now why on earth would I want to take one medication that would require I take three or four more to counter the side effects?  I think I will just choose to live, and let nature take its course.

When I get the urge to go hiking, do not tell me “no” I cannot do that I will get tired.  I already know I will.  I already am aware I will probably be exhausted, and have to sit down numerous times along that hiking trail and be prepared to drag me 90% of the way.  If you can’t do that for me as someone who cares, then walk away and let me find someone who will. I will set my own limitations my way. I will deal with it, and if need be, I am stubborn enough I will crawl back on my own.

When I wake up every morning, in one way or another my body reminds me of my limitations, and this reminder does not need confirmation.  I try hard to get other’s to see things from my perspective.  At least one time a week, I read or hear of another individual my age, who has passed away from complications related to Multiple Sclerosis, and it is a reality check. MS is not my only weakness.  I do have two other debilitating illnesses and of course neither of them have a cure either.  I try to live every day as if it were a day to experience something I have not before.  There are so many things in life I want to do, experience, or enjoy and since I know not the span of that time, I try to make it a goal to do what I can before nature takes its toll and doesn’t allow for it.

I think to myself. Dear wooden floors oh how I love thee more than carpet!  For with you, I can sport my favorite socks and just slide and shuffle my feet from one room to another instead of having to make the effort in lifting my aching legs to move me to the recliner calling my name.

And yes dear recliner, sporting my favorite afghan upon your back, how I love you too for knowing just the right position to bring me comfort as I sit upon you like a throne. The remote to the television be my scepter.

I am the MASTER of my little domain and I rule this roost.  Life is grand!

Now I just need a few minions who would be willing to follow orders.  Reality bites.

Then I contemplate the stupidity of that previous concept on floor coverings.Was a wooden floor such a good thing?  What if one day I would need it padded for when the sock-floor-shuffle fails me and I land firm and hard on my keester?

Ahh, then I shall laugh and say, thank you dear brown sugar and cinnamon Pop-tarts ® I consumed so many mornings.  You have added that extra cushion to cover my backside so well, that landing on the floor has not bruised my buns as much as it did my ego.   Where the hell is my bubble-wrap?

Hearing this news today.. I am still numb and indecisive.  But I am definitely now creating my future life plans and ratifying my goals, expectations and future adventures.

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467

They say time flies when you’re having fun, and I truly have to agree with that and I am still hunting down that fun.  Pain seems to be an issue as well as coordination, thoughts, and working. This year there were also several changes I made in my life.  I have decided to use more natural and alternative means in helping deal with the pain that MS, Arnold Chiari Malformation and Fibromyalgia bring into my daily life.

It was a hard decision to make, but I spoke with my family about it, well at least those whose non judgmental opinions matter.  I have decided to be a criminal and partake of herbal substance the state of Missouri now considers illegal.  See I knew marijuana, although banned, does alleviate many of the complications and pain related to MS, and other muscle and pain disorders, so I partake and just hope not to wind up in jail should I get busted purchasing it. Missouri is not like Michigan or California, which allows it.

Were too full of over judgmental Vicodin® popping bureaucrats who think it is a gateway drug to heroin and methamphetamines.  I sure know several Vicodin addicts who have moved on to Crystal meth or heroin, and almost ten times as many medicinal marijuana users who would not dare to touch other drugs.

I was tired of repeatedly taking Ibuprophen® for pain, and did not alleviate it.  Instead it landed me at the gastroenterologist for treatment of permanent stomach and gastric damages to the lining of my stomach.  These damages required 2 medications all the time to alleviate, and another medication to counter their side effects.  Eventually I quit the  stomach medication and switched to Apple Cider Vinegar as alternative, and the side effects of the Nexium® are gone I eliminated becoming victim of the pill cycle again.  Now instead of taking pain relievers causing damages, I partook of the “herbs”.   I refer to this as my daily salad… a bit of green and vinegar!

Just when I thought there was hope and saw that the state was considering Medicinal Marijuana on the ballot, it was once again voted down by people who are so blinded by the profits and campaign donations they get from pharmaceutical companies, they didn’t want to listen to the cold hard facts of scientific research and how it has improved the lives of many people in other states. Once again they were fearful it would be a drug leading to other addictions.  HMM, I thought that’s what Percocet, Vicodin, and Alcohol did?

I was now left with the decision to either break the law or spiral downhill once again.  Why I could take other pain killers, and then medications to counter them as I did several years back, and have no pain, but no life, or I could become a criminal and go across a few state lines to Colorado and purchase what remedy would work, and sneak back home to Missouri.  In the meantime,  I fight for legislation to regain my life, and when I feel I cannot handle the pain and side effects MS brings, I become a criminal until I find relief I need.  I still cannot understand why Narcotics which cause more harm are legally and readily available, and something so natural is a crime.  Why we don’t hear of all the deaths so often caused by legal prescriptions?

So now, I as many others living in pain, fight legislation for relief, from behind our computers, and with help from friends, because thanks to the government forcing unjust regulations, we cannot do as much as we like, because we cannot partake of what alleviates our misery as often as we like.

I spend my days reaching out to others that have medical conditions preventing them from living their lives to the fullest, and when life gets to tough, I commit a misdemeanor or two in the name of liberty and freedom, because I do believe the Constitution allows me to do to my body as I so choose and I acknowledge no other authority that does not adhere to the Constitution.  I have found journalism to be my source of venting and relaxation, as some days it is about all I can do, without discomfort.

Just as our lives belong to us and how we live determines the outcome, so is our health.  How we choose to fight our health battles determines the outcome.  I shall fight for the best alternative care that works for me, and hope that one day, my voice will be heard.

The hardest part is staying silent. It works well for me and I want to share its results with my fellow sufferers.  I suppose if half of my family read my book, or stayed at my house long enough to notice my routine, they may find they’re in the presence of a criminal and report me themselves.  Should we not have a choice?

How many of us know people we are close to, that get behind the wheel of a car after consuming a drink or two?  They may not be over what the state law constitutes as legally intoxicated, but we know they are impaired enough to act quite idiotic and not rational?  So I will take my retribution, live with my conscience, and continue what works for me.

There is a journey we all take in life, this is mine.  Let me take it my way and be happy that I am alive to continue it. Also taking donations for bail money 🙂 should I need it.

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467