I’m Guilty

i_m_guilty____by_nikewolf120-dabkn8vWe spend an incredible amount of time focusing inwards and we write about it hoping that the world will come to an understanding of what Multiple Sclerosis is and the impact it has on our lives and on the lives of our family.

This is all well and good because the world at large does need to come to an understanding of the lives of disabled people.

The one thing we don’t write enough about is our family and how they cope or don’t cope, and the people around us.  We don’t address how people react to us when they see us in wheelchairs or in bathrooms etc.

You and I know about how painful it is when people react in a negative way.   We also don’t address how rewarding it is when people behave in a kind and loving manner.

Think about it.  Then think some more about it.

I know that I addressed one man who thought me drunk in walking down the streets of Princeton.  When he realized his mistake, he walked me all the way home.

I have many stories like this.  I am guilty of not writing about them.

Are you?

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Stress and Multiple Sclerosis

negative peopleWhat are the effects  of stress and Multiple Sclerosis?

HUGE!!!

Increasing numbers of studies are reporting an association between stressful life events and exacerbation in multiple sclerosis..  By David C. Mohr

Well it’s obvious what one needs to do, right?  Try and get rid of all the things that cause you stress.  It’s difficult to do since what brings the most stress to people is other people.

Family is the number one set of people who can cause us undo stress, but you can’t very well get rid of family.  However, you can try and avoid the people who give you stress, particularly family.

The next thing that brings us a lot of stress is money. We can’t do much about it ourselves since as we get worse, we can’t work.  Not working leaves a household with one less paycheck.  The guilt that comes with that can cause us to become scam victims when people contact us via the internet or on the phone with fast and quick schemes to make make money.  I know.  This has happened to me several times.  Call me gullible.

I avoid  family members that cause me stress.  I can’t say, “I don’t like you.  Leave me alone!  However, sometimes it can’t be avoided.   During these times, I listen to them politely, but you can read my face like a book.  If I get a glazed look in my eyes, then I’ve tuned them out.  They know it and soon make their excuse to talk to someone else.  If they’re talking to me and then stop waiting for a response, I often give them the wrong response.  They know that although I have an attentive face that I haven’t been listening.  If I’m perturbed by them, they can tell and so forth.  Fortunately, for me, they learn to avoid me as well.

However, there are times when these people, family or friends, who malign me in public, such as in social media etc…  This is when I fly to my own defense.  I can’t tolerate people who make false accusations about me.

I have one relative who recently turned their back on me, which started publicly, because I didn’t make a complimentary comment about them.  I nearly fell over when they attacked me like a Mack truck.  I will make no further comment about this situation but to say that I realized this person was so insecure about themselves that they needed me to say something in response to a question they asked.  This question would have led me to lying about how I feel about a certain thing about them.   I don’t lie.  I won’t lie to someone just to make them feel good.  They are an adult not a child.  I gave them so many affirmations in so many areas about their life, but about this one question, I couldn’t say what they wanted to hear.  Unfortunately, I lost this relationship with this family member.

It goes to show you one of many ways that people can cause you stress.  This bothered me for weeks on end.  I slowly lost the feeling of perhaps I should have responded differently only because I just won’t lie.  I stuck to my principles and I lost. Sometimes it happens.  In the long run, I felt better about it.

Money?  I won’t even touch on that scenario except to say I’ve made some mistakes about that as well and it was mainly out of guilt.  Knowing the hardship this caused my family, that is; my inability to work and bring home a pay check led me to internet scams.  Instead of making money, I lost money.

Each consequence of being honest with yourself and figuring out what bothers you about some people or financial problems that you’ve caused can lead you on a journey of self discovery.  It has me.  I’m a better person for learning what I did or did not do right or wrong.  I’m better off knowing what makes me tick and dealing with the issues that stops the pendulum on my clock from swinging causing me to miss the ticking of my own clock.

Try to avoid stress.  Do what it takes to be rid of the issues that cause you stress.  Sometimes it can cause you more stress, temporarily, when fixing these stresses, but hang in there.  You will come out of it a better and happier person.

Find people who bring you positivity.  You have enough negativity in your life to bring you down.  Try and avoid blogs that bring you down.  Stick to the ones who end up positive.  Avoid the “woe is me” types.

 

 

 

 

 

 

 

A Pain in the Neck

I’m back!  I’ve been back for a week or so shuffling my way around the house with a neck brace on.

It wasn’t a difficult surgery.  The pain from it is about what you would expect after having a surgery of any kind.  There is pain, but not something that some pain pills won’t put a dent into it.

What are the results thus far?

When I first got out of surgery that first day, I thought that….whoopee, my legs don’t feel pain!  They didn’t.  I couldn’t believe it.  Gradually, as the second day wore on, I began to feel pain in my legs.  I shrieked inside my head, I begged inside there but to no avail.  That stupid pain was on it’s way back and there wasn’t anything I could do about it.

Why did I not feel pain at first?  I don’t know.  I haven’t had my follow up visit with my doctor.

For a few days after my surgery, I felt the crawling onset of pain build up in my legs. It was progressively worse towards evening.

Although having surgery in my neck or cervical spine, my greatest concern was the pain in my legs and not in my neck. I was so hoping that I would be like the research I read prior to surgery where people had been helped with the pain in their legs
after having cervical surgery. That did not seem to be the case for me.

I sat in pain in both areas, legs and neck, and thought about my future days with Multiple Sclerosis. Was the pain in my legs neuropathy and would I have to incorporate living with that added pain in my life? MS was difficult enough to contend with as
it was. Why suffer the pain of a new neuropthy? What more lay ahead in living with this disease that I had not already encountered?

My husband came over to visit me on the third day. Everything he said irked me. I’m normally not this way but that day I could not contend with the mundane tidbits of everyday life at home that my husband told me thinking it would cheer me up. Why in
the world would telling me about home make me feel any better when what I wanted most was to go home, crawl into bed and cry?

You can’t blame him. He did not know about the screaming and yelling going on in my head, like a street fight brawl. He innocently sat there, made a comment, then get quiet waiting for some sort of response from me, as though I was delighted with what he told me. After repeated attempts at trying to cheer me up this way, he finally got the hint that this was not working.

Today, I’m a bit more cheerful despite the pain in both my legs and neck. Being home helps. Surrounding myself with the ability to do the things I know and love also helps. I haven’t done anything constructive but the tools are all available to me should I once again have the desire to think outside of myself.

 

My Take On This:
Being in this tunnel of negative thoughts is something I avoid at all cost. Sometimes it can’t be helped. I’m human and when in pain, even the best of us succumb to laying down in some dark corner of our minds and hearts, beating our hands and feet
like a child having a tantrum.

I believe I’m crawling out of there and will once again pursue the answers to my questions. What are they?

1. Is the pain in my legs a neuropathy? If so, what do I do about it?
2. Can this pain in my legs be resolved with the EMG test I spoke about in my earlier blog, where the nerves that are sending
these strong pain signals to my brain, be isolated and blocked?
3. Why did I initially feel an improvement and to be quite honest, there is still a bit of improvement?

In ending, my dear friends, this has been a struggle and continues to cause me some confusion. Spring is coming and I want to feel good for it, at least as well as I can feel despite having Multiple Sclerosis.

Back to the drawing board, literally. I feel like art work today. That’s a good sign

Can I Run Away From Myself?


Well folks.  I’m here to tell you that right now I’m beside myself handling all this pain I’ve been experiencing.

It all started almost three months ago.  I began to feel a strange tingling in my legs, stronger on the left side.  It was strange because it just went from my knees to my ankles.  It came and went.

Then the intermittent periods between it’s coming and going shortened and I started experiencing pain.  It was the sensation of a charley horse.  You know how you know that it’s coming?  You start to feel a pain that builds and builds then it gets to the peak and goes over into excruciating pain.

What happened to me is that it went over into excruciating pain and it never went away.  It’s horrible.  Add to that the tingling sensation!  It decided to join the pain party and get stronger.  It also decided to stay at the party like an uninvited guest who doesn’t know it’s time to go home.

Have you ever used a tens unit?  Well if you turn the tens unit too high you get awful pain from it because it’s like an electrical sensation that’s too high.

This is what I’ve been living with for two months now.  I’ve been to the hospital twice trying to get help for the pain.  They helped me over night by giving me morphine and they ran all sorts of tests.  They felt it was coming from my back.  There was no definitive reason why they thought that, but that is what they said.  During the one stay at the hospital, their solution was to give me a heating pad to put on my back.  This was the instructions the hospital neurologist gave.

It was a very odd visit with him.  He could barely hear and no matter what I said he insisted that I had back pain.  I kept insisting that I didn’t.  My general practitioner also felt that way.  She felt it was sciatica.

There is no point repeating myself relentlessly because I know my last blog mentioned a lot of this.

Here is where I’m at now. MRIs were taken of my lumbar spine and my cervical spine.  My lumbar spine showed a bunch of stuff, but the radiology report was not definitive that about anything impinging my spinal cord.

My neck, however, showed that in three different areas, my spinal cord was impinged.  It was decided that I see a pain management Doctor for my legs and surgery for my neck.

I went to see the pain management Doctor.  I was given Tramadol for pain which is dispensed one week at a time and that they would like to try an injection in my back, under anesthesia, to block the over active nerves from sending pain signals to my legs.  This will be done on the 15th of January.  I figured, what the heck.  I will try anything to get rid of this pain.

Then I saw the neurosurgeon about my neck.  He told me, they will go in through the front of my neck, push everything to one side, in order to reach the cervical spine.  They will then remove three discs and replace the whole thing with a rod. But wait…there is more!

I finally saw my MS Neurologist.  I bombarded him with everything that had occurred since we last met.  I did wonder if the pain in my legs was from MS or something in my back.  Since the consensus from so many doctors was that my back was the root of the problems, I went along with the crowd.  However, my neurologist asked me to explain the pain from onset to where it was that day.  I did.  He looked at me and he said, “What you’ve explained to me is a classic case of neuropathy.”

                “What do you mean?”  I asked.

                “No kidding.  You explained to me precisely what happens with neuropathic pain.  The fact that it doesn’t seem to be connected to pain in your buttocks or your back and that it seems to be concentrated in just your lower limbs.”

                “Oh no!  What should I do about the nerve block procedure?”  He thought about it for a second and said.

                “Well just in case I’m wrong, I would go ahead with the nerve block.  I doubt that it will help, but if it does, then great!  However, I think we will try and treat this with medication as well.”

I thought about everything he just told me.  On the one hand, I was pissed off at all the doctors who treated me at the hospital with heating pads and morphine.  Why in the world didn’t they think about neuropathy and help me with medications.

I was also pissed off at me.  Why didn’t I call my Neurologist when all this started?  I thought about it, but I didn’t act on it.  Instead I waited hoping it would just pass like so many other things come and go in MS.

He did agree with the Doctors about my neck because he too had received a copy of the radiology report.

My Take on this:

Relief from pain.  I don’t care what it takes.  I’ve lived in 24/7 pain for nearly three months and my heart goes out to people who live in this kind of pain for so much longer.  I can see why some have suicidal thoughts with this kind of pain day in and day out.

I wanted to run away from myself.  I wanted to shed my body and just turn around and kick the old thing.  I wanted to run as far as I could from it. 

I usually look at my life five minutes at a time, but right now I have things looming in front of me that is difficult to ignore.

The shot should be nothing…I hope.  But the cervical spine surgery is not something to slough off as nothing.  I don’t know how much more my body can continue to take at this point.

Let’s forget about all that I just wrote.  There are a lot of positives that can loom ahead in the future as well.  I should not be ignoring that. 

Take one step in front of the other and …  and…

Does anyone know how to run away from myself?

I Can’t Hear You

You go along, working on being strong but conserving your strength (LOL) like the Doctors tell you and then…….Reality hits like a sledge hammer.

Paresthesias  abound.  You try to ignore them.  You go about your business as though nothing is wrong and then you finally succumb to whimpering and crying because this particular one is unusual in its tenacity to hang on to you as though there is no one else in the world to bother.

Ianded up in the hospital on morphine for two days.   The Doctors there scratched their heads trying to figure out what was the cause of it.   They weren’t neurologists.   My Neuro was an hour away unaware of what was happening, and beside that, he had no visiting privileges to that hospital.

They put me on morphine.  That was good because it quieted things down a bit.   Then I could see that look in their eyes of “what do we do next?”

I told them over and over, “call my neurologist”.  They said they would call the neurologist on call.   Meanwhile, they drew blood or tried to.  After about an hour of trying, they decided to put a PICC line in me.  Oh great!  More to deal with!  Off to Interventional Radiology I went.

After that ordeal, it was decided to do an MRI of the spine.  Great!  It’s their money.  I’m just a patient.  I don’t know what is wrong with me!  Wrong!  I do but I don’t.

The Doctors came back with the Radiology report in hand and indicated to me that they were still unsure.  It could be this or that and by the way, did you know, blah blah blah?

The next day they told me the Neurologist was just outside my room.  Great, I thought.  Now we will get these other Doctors to understand the nature of having Multiple Sclerosis.

He came in after consulting with the other Doctors and said to me, “I hear you have back pain!”  I said,

                “What?”

                “You have back pain and we will leave you on morphine for the time being until we get more information.  Also, I have ordered a heating pad for you.  See if that helps.”

                “But Doctor.” I said.  He interrupted me and said,

                “Speak louder, I can’t hear you”. I realized then that this man should have retired years ago.  He didn’t understand me and I couldn’t understand him either with his thick accent.

I looked at my husband and he said “Useless.”  That’s my husband.  Comes straight to the point with one sentence.

My assigned nurse came down with a strange looking box and plugged it.  She handed me the pad part and told me to lean back on it as she held it in place.

I sat there dumbfounded.  I realized that this hospital or at least the neurologist assigned to me knew very little about MS.  They knew about the disease but didn’t know how to treat it.

I knew that either I was having an exacerbation of MS or that something was wrong with my lower spine.  What was wrong with my lower spine could be a lesion from MS or it could be normal wear and tear.

I decided to sleep with the pad because the heat felt good and deal with the issues that were pounding my brain trying to get a voice out.  I quieted the voices down and told them later.  My husband just sat there quietly, but when everyone he said,

“We are never coming here again!”  I nodded.

The following day, after waiting more than 5 hours for my GP to arrive, we decided to leave AMA (against medical advice).  On the way out, we ran into my doctor.  We explained to her why were leaving.  She told me she was going to refer me to a Rehab Facility.

I sit here now talking to you through my words at 5:02 a.m.  I slept a few hours earlier and now I’m wide awake.

MY TAKE ON THIS:

Don’t despair if you are in crisis and taken to a hospital. Deal with it, get what you need such as pain meds and leave.  You can’t really fault the hospital for not knowing how to deal with you.  The only thing they know how to do is run diagnostics on you and treat the symptoms.  For that matter, so would a hospital with knowledge of Multiple Sclerosis do the same thing.  Run diagnostics and treat the symptoms.

What makes a difference in hospitals is the neurologists they have on call.  I could have waited the second day and asked to see a different neurologist, however; I was at a point in my pain frustration that all I wanted to do was go home and deal with it there until I saw my own neurologist.

Turn this bad experience and find something laughable about it.  We did.  My husband and I laughed all the way home after bitching about what happened.  It was a fiasco.  The only good thing about it was having morphine for two days.

Sedate me please!!!

Are You Playing Games With Me?

Somehow, instinctively, I knew that I should play games.  I don’t know how I knew it, but I did.  Come to find out, after playing games a lot for over a year or so, I happened Candy-Crush-Saga-featuredupon an article that spoke to the cognitive function and the positive impact of game playing.  Unfortunately, I don’t know where the article was on the web that enlightened me because that was many years ago, but let me see what I can find now about it.  Give me a few minutes and I’ll be right back.

Here is an article I found from Multiple Sclerosis Net (https://multiplesclerosis.net/living-with-ms/gaming/).

Unfortunately, she too doesn’t mention where she found her article, but like me, she intuitively found gaming to be helpful.  Here is her article.

 So let me tell you how excited I was to see this news release about video gaming helps those with multiple sclerosis! I did a little happy dance on this, because I’m a total gamer. Not just on the ‘gaming console’ but in the App Store and all that. It seems to help my train of thought going… really challenging me!
So, when I have some free time, which I try to make time for daily, I will play video games on the Xbox or on my tablet. My husband actually noticed that after I started playing more games, that my ‘cog-fog’issues seemed to happen less and less.
Now, if only we could all be professional gamers… ha-ha, but anyways, I’ve also played games on Facebook and on the computer in general, prior to there being easy access to games through apps.
So, back to the study… one of the firsts sentences is what I really wanted to highlight, “Video games targeting cognitive abilities may improve brain function in patients with multiple sclerosis (MS), a new study found. Results, published in the journal Radiology, showed that these games strengthen connections between neurons in the thalamus, a brain region crucial for information processing.”
It seems that they were using specific games to target the ‘cognitive abilities’ in the brain… but I just wanted to share that I’ve personally found that challenging myself here and there just ‘playing’ games has really helped. Especially the brainteasers, the ones that make you think, etc. My thought process has seemed to speed up, with the help of games that ‘keep me on my toes’, where I have to process the information quickly, etc.
Now, when my husband asks me what I’m doing on my tablet, phone, computer… or why I’m playing the Xbox, I say, “Don’t judge me, I’m improving my cognition.” Which, he just laughs and shakes his head at me about it… but you get the idea.
My interest in wanting to play more games has really brought more ‘quality-time’ with my kids because I have two boys that are 7 and almost 10… so this is an activity that we get to participate in together, and they have no idea that it is helping me in some ways.
Also, I’m not saying that ALL games have helped me… just some of them. I mean, it’s hard to say that HALO (my favorite) or Call Of Duty has helped my ‘thought process’, but at least it’s something that I enjoy doing, instead of just sitting around pondering the ‘what-ifs’ in life…
I remember last year, that I attended the Abilities Expo in DC-Metro Area, for MSWorld. Dr. Kantor actually interviewed someone that made a charity, for those with disabilities that like to play video games, but need some sort of assistance, it’s called AbleGamers, the coverage video can be found by clicking here.
Anyways, this was something that I was VERY excited to hear about and I wanted to share with my fellow MS’ers (and fellow gamers) out there.

Let me see what else I can find.  Be right back.

Wow!  From the same site, Multiple Sclerosis Net, I found someone else talking about this same issue, but this time she gives the article specifics.

Cognitive decline – the slowing of our brain’s functioning – is often viewed as the most worrisome of all the possible effects of multiple sclerosis, but treatment options are rarely identified.
According to the National Multiple Sclerosis Society, “Cognitive changes are common in people with MS — approximately half of all people with MS will develop problems with cognition. … In MS, certain functions are more likely to be affected than others:Memory (acquiring, retaining and retrieving new information).
The Multiple Sclerosis Association of America featured cognition in a recent issue of The Motivator, and offers a thorough explanation of the current reasons thought to cause change in Cognitive Issues with Multiple Sclerosis: Research, Strategies and Support. Beyond the physical change due to the demyelination process or brain atrophy, they also suggest polypharmacy (use of multiple drugs that might slow cognition), gut bacteria and/or smoking may contribute to cognitive decline. MSAA cites that the number of people with MS affected by cognitive decline may be up to 70% and there are times I feel like I am in that group.
So I was especially excited to see a press release from the NYU Langone Medical center about their research into ways people with MS can improve their function using online brain training games. Dr. Leigh Charvot presented the results of An Adaptive Computer-Based Cognitive Training Program Improves Cognitive Functioning in Adults with Multiple Sclerosis (MS): Results of a Double-Blind Randomized Active-Placebo-Controlled 12-Week Trial at the recent American Academy of Neurology (AAN) convention in Vancouver.
Dr. Charvet’s team used PositScience’s online program Brain HQ for the study group and the other group used a placebo program. For this study they included 135 people who were already showing cognitive problems associated with their MS. Each participant was encouraged to train on their computer program at least one hour per day, five days per week and there was a technician available to help and also provide direction.They found that people affected by MS who used Brain HQ for one hour per day for the entire 12 week study had a positive increase in cognitive functioning by 29% compared to the placebo group’s 15% improvement. I bet you will agree that is a significant number and is very encouraging. The researchers suggest the improvement rate may be even higher than found in their study, because their placebo group did their activities on average 19 more hours than the test group.
Equally encouraging with these results is that the participants all did their brain activities at home, on their computers. Access to therapy care continues to be a problem for many people, and that can include lack of transportation to appointments outside the home and the high costs of treatment visits. Being able to do this training in the convenience of  home and  on our own schedule takes away part of the access problems.
“Many patients with MS don’t have the time or resources to get to the clinic several times a week for cognitive remediation, and this research shows remotely-supervised cognitive training can be successfully provided to individuals with MS from home,” says senior study author Lauren B. Krupp, MD, professor of neurology and director of the Multiple Sclerosis Comprehensive Care Center. “Future studies will look at which patients with MS might respond most to cognitive remediation, and whether these improvements can be enhanced or sustained over longer periods of time.”
A remaining hurdle for this at home training is the cost – Brain HQ, the program that was used in this study, has a free program that includes access to the introductory activities but they  also offer a subscription program for as little as $8 per month ($96/year). You may not be ready to buy a subscription and the free version allowed me to try their program, which proved to be quite challenging. Although not necessarily studied for MS, there are a number of other online brain training sites – one of the best I’ve found is NeuroNation, run by a group of prestigious neuroscience institutes from around the world. NeuroNation has a comprehensive free program and they also offer a premium program that has a fee to use at about the same price as BrainHQ. If you use any online brain training I would love to know which ones and your opinion as to their effectiveness.
Even though we’re adults, this research shows we need to play more games – especially the ones that will assist our brains in the fight against MS.

The link to this article is https://multiplesclerosis.net/living-with-ms/fun-and-games/

There are many other sites that confirm the benefits of playing games for aging adults, young children with various problems and people with cognitive impairments such as those with us with Multiple Sclerosis.

So I ask you, are you game playing with me?

A Reminder to Self

ratty-old-booksSometimes you meet someone and for some inexplicable reason, you click with that person.  Has that ever happened to you?  It doesn’t matter whether they have Multiple Sclerosis or not.  In the world of mutual admiration, illness takes a back seat.

At the same time, sometimes you meet someone and for some reason they rub you the wrong way.  Getting to know them better, you realize that what you first felt is still how you feel weeks or months later.  Has that ever happened to you?

Then there are strangers whom you haven’t met.  You know what I mean?  For instance, people walking towards you on the sidewalk.  You smile at them and they don’t smile back?  You’ve seen them.  I’m sure you have.  Or are you the type of person that doesn’t smile at strangers?  I smile at them all the time, when I’m out that is, which isn’t very often.  These people look at you and they will react one way or another.

It is evident that something is wrong with you.  Either you are walking with a cane, leaning on someone’s arm, in a wheelchair, or walking like you’re drunk and hanging on the wall of a building.  I know you understand all these scenarios.

I smile.  It’s simply my nature to smile when I catch someone’s eyes.  That’s a weird expression, isn’t it?  (Catch someone’s eyes.)

So okay, I smile at people and some will smile back and others won’t.  Some people will even respond to your smile by uttering a greeting of one kind or another such as, “Good morning.”  Other’s make a point of trying not to look at you.  You can see them glance your way, and then they quickly avert their eyes to something else.  Still there are others who don’t look up at all.  They resolutely stare down at their feet as they walk.

Sometimes the people that you meet have a predetermined impression about you based on your outward appearance.  Aren’t we all guilty of that?  The color of your skin, how fat or skinny you are, tall or short, the way you walk and talk, their perceived intellect of you, pretty or ugly, and the list goes on.  All of these values that people judge each other are subjective, meaning that it is an individual’s perception of these values.

So what am I going on and on about?  I’m not sure!!!  Let me try and remember.  You know what this is like.  Sheesh!

Okay, I’m back.  Have to type fast before it runs away from me again to hide in the dark recesses of my mind, as though playing hide-and-seek with me.

I’m addressing how we react to people when we first see each other and the powerful impressions that are imprinted in heads.  Because of those impressions, we make a value judgement.  Right?

This is highly unlikely with people with MS (Multiple Sclerosis) since many of us are  in wheelchairs, but it’s for the others who read this blog as well.  Then again, some of us with MS also think this way.  Think about it.  We see someone in a wheelchair coming towards us.  Do we say hello or not?  What if the person in the wheelchair is hanging over the side (exaggeration here) and drooling?  Were we going to say hi but changed our minds?  Why did we change our mind? We probably made a judgement decision.  We may not be aware that we did, but we probably did.

We complain about people judging us but I bet if you analyze yourself, you too are judging others.  Practice what you preach?  Yes, I think so.  I know that I am guilty of it but if I become aware that I’m doing it, I make an immediate attitude adjustment or at least try to.

I don’t want people judging me because the symptoms of Multiple Sclerosis can be very obvious, as in my case.  What right do I have to judge others whether I’m in a wheelchair or not?

Being ill does not give us justification to throw away decent human principles.  Having Multiple Sclerosis or any other disease does not give us the right to expect more from society at large than when we ordinarily would expect to receive.  Now I’m talking respect and moral issues.  What’s that old saying by ???  I know it’s in the Bible but it’s in other places as well, even older than the Bible.

“The Golden Rule or law of reciprocity is the principle of treating others as one would wish to be treated oneself. It is a maxim of altruism seen in many human religions and human cultures.[1][2] The maxim may appear as either a positive or negative injunction governing conduct: ” (I looked this up in Wiki.)

So let’s not kid ourselves.  If you want to be treated with kindness, then be kind.  If you want that smile when you walk down the street, smile at them.  If you don’t want others to treat you with disdain, don’t do it to others.

If you expect more than what you give, it ain’t gonna happen.  I’ve found the opposite to be true.  If you give more than what you receive,  oftentimes you are met with disappointment.  That’s no reason to clump people into a Rolodex file under “people I don’t like”.

A good thing we can do for ourselves in every day living is to treat others how we would like to be treated.  It’s difficult but it’s a positive thing to do and it’s medicinal.  Don’t fill your heart with bitterness towards others who treat us unkind.  Instead treat others who are unkind as if they have a disease and they need help!  Then give them the attention that you would like to receive as an ill person.  Remember that what you give is what you’ll get, if not in this world in some other world.

MY TAKE ON THIS:
I don’t know what got into me to write the above.  I think it’s because we went out the other day and I encountered two different types of people.  One didn’t meet my eyes, another did and smiled.  There was another person, now that I think about it, who just stared down at the ground.  I felt sorry for them.
My first impulse was to feel indignant at the person who saw me but didn’t smile and the other person who saw me then glanced away.  Then I got to thinking about why I felt this way.  I suppose I’m telling you what I told myself when I hollered at myself inside my head.  I do that a lot.  Holler at me inside my head.
So take this particular blog for what it is.  A reminder to self to be nicer to people and not to expect special treatment just because I’m ill–and not to judge people by their cover because I don’t want them judging me either.

Time To Take The Pills…What? Again?

hamburger-pillsI go to a specialty clinic in New Jersey for Multiple Sclerosis called the Linda E. Cardinale Center. Here I visit with my favorite Doctor who deals with MS and only MS. He is the head of the center and is well renowned.

I see him every 3 to 6 months depending on how I’m feeling. I was past due for a visit but landed up in the hospital which delayed my visit with him yet again.

It was a beautiful day for a drive out there which takes us about 45 minutes. The nice thing about the drive as well, is that it locks my husband and I of nearly 30 years of marriage into a small compartment (car) where we talk about issues we normally don’t give ourselves time to.

After talking to my Doctor for awhile, I was remonstrated for not being on my therapeutic drug for MS. To be honest, I don’t know that it helps, but he thinks that it at least keeps things stable or slower.

I told him about my hospital stay and my visit to Chicago, and he told me that I wouldn’t come back to the me that I was before the hospitalization and the stress of Chicago for at least 6 to 8 months. I already knew this from previous setbacks. He also indicated that it will take longer and longer to come back as time moves on, if I come back to normal (for me) at all.

You know what? I just hate getting slugged around with bad news one after another. He poked around on me, as usual and with his little hammer knocked me in the arms, they went flying, then he poked me in the knees and as before, could not illicit any movement whatsoever.

He told me my head was starting to lean over more and that I should move up my appointment for my Botox injections in my neck.

Did you know that? They use Botox in muscles using ultrasound to strengthen muscles. That’s what keeps my head up from the dystonia that I have.

Ok, I hear you. What is dystonia?

Definition: n dystonia:   your muscles contract involuntarily — causing uncontrollable repetitive or twisting movements of the affected body part. Your symptoms may be mild or severe, and may interfere with your performance of many day-to-day tasks. 

Doctors divide dystonia into categories including generalized, focal, segmental and other less common categories. In focal dystonia, the most common category, one part of your body is affected. Generalized dystonia affects most or all of your body. In segmental dystonia, two or more adjacent areas of your body are affected. Some types of dystonia are inherited.

Medications can sometimes improve dystonia symptoms, but inconsistently. In some more-severe cases, surgery may be used to disable or regulate certain brain regions or nerves. (Mayo Clinic)

There you go! My dystonia is in my neck. So it hangs down and to the side. That’s why you usually see my holding my head up in pictures or leaning. I get to see lots of feet and introduce my head to lots of wall bumping because I can’t see ahead. My walls know me very well.

When I got back into the car with my David, I had all these instructions for starting up Aubagio again, and blue slips of paper for medication adjustments etc…..

I am bogged down by pills.

Here is the great thing that happens on these visits! You will have to applaud my David for this.

He knows I’m always down in the mouth when I come out of these visits, so he took me to AC Moore (craft store), where he allowed me to shop for whatever I wanted! He always turns it into a treat day for me.

So hey drugs, you trying to drag me down? You can’t beat my support of my husband who will defeat you each time by having me come home with a huge smile on my face.

Thank you David.