My Little Fiat

Hello,

This is a draft from several months ago that I just now finished.

 

Here, in New Jersey, the weather doesn’t know what it wants to do.  Sometimes it’s a spring day.  Other days it’s the heat of summer.  Still yet, there are days of crisp fall.  Eventually, it will remember that it’s supposed to be summer and the heat will come roaring in.

 

The nature of my Multiple Sclerosis is like the weather.  Some days it doesn’t seem to know what sort of chaos to bring me.  Other days, I coast through.  Then there are the days of dreaded summer’s heat where I hide indoors.  Top it off with days of deep winter where I’m in deep pain.

 

Most of the time before, this past year, I am simply a person with advancing MS.  I’m supposed to wear a leg brace for my drop foot.  Drop Foot is when I walk, my foot doesn’t completely lift off the ground as I advance forward.  Therefore, my toes catch on the ground and I literally trip over my own feet.  Luckily, for the most part, I’ve learned to expect this to happen and I can catch myself before I completely fall to the ground.  Other times I’m not so fortunate.

 

I use a walker in and out of the house. I also use a cane or a wheelchair in and out of the house.  Most of the time, I just don’t go out.  My husband does all of the running around and he taxis me to my appointments.

 

I have a car that we recently purchased.  About five years ago, we sold the little Volkswagon that I owned.  The reason that we sold it was because I seldom drove it and my husband drove me anywhere I needed or wanted to go.  This was a huge mistake.

 

The little bug car sitting in the driveway every day kept me sane from the feeling of isolation that would overwhelm me at times.  I knew that I could always drive somewhere if I wanted to.  It was the key to my freedom.

 

Having a car meant that I cold just drive it over to the park or anywhere my heart desired, such as to the movie theater. It comforted me.

 

Isolation is one of the brutal aspects of living with a disease.  The more isolated you are, the more you crave the isolation, after a brief period of fighting it.  With isolation can come depression.

 

I don’t have that type of depression…yet.  I can become depressed for a day or a few hours but it’s not depression.

 

I have a small Fiat now.  I can zoom around the neighborhood again.  However, most of the time it sits in the driveway collecting dust or being there as a support system for every bird that flies over, allowing them to release their little sphincter muscle and crap all over my car.

 

My little Fiat.  It sits there taking all sorts of crap, like inclement weather be it the snow, rain or heat.  Heat that would have me turn into a puddle where my legs no longer existed. 

 

The Fiat, however, stands sturdy on it’s four tires and it stares blankly at the wall of the house.  It seems to know that it should sit there and be patient for the day when I or my husband takes pity on it and takes it out for a spin.

 

My take on this?

I want to be like my little Fiat!

 

I  want to stand true and firm despite whatever is thrown my way.  If I’m crapped on, or like the weather being unpredictable oftentimes, I would stand tall despite it.

 

I would like to think that I would be supportive to readers of this blog and send them some warmth.  I would want people to know that they are not alone and that I’m here keeping them company.

 

Hugs to one and all.

Magdalena

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Medicinal Marijuana

I don’t know how many of you are trying out medicinal marijuana.  I am.  Let me tell you about my first visit to a dispensary, as they are called in case you are wondering what it’s like.  I’m telling you about the dispensaries in my state of New Jersey.

 

You have to make an appointment for your very first visit.  This is because you meet with a counselor who discusses with you how it all works.  They also educate you a bit on the different types of buds they have and what it can do for you.

 

I was given a brochure with the different brands they offer and what the benefits are.  It also details what the pros and cons are for each one.

 

I don’t know why I was nervous about the whole thing, but I was.  Perhaps it was because it had been illegal for so long and suddenly it wasn’t.  Well maybe not suddenly, but you know what I mean.

 

I was led to a seat until someone at one of the counters became free to help me out.  While I sat there I looked at all the stuff behind the counters.  I wasn’t sure what these items were because I was a bit too far to make them out but it was an array of colorful items.

 

I thought back to the 60s and the 70s where we, the hippies, smoked through pipes, bongs, etc.  It was illegal but we did it anyway.  There always seemed to be someone with a “joint” as we called the made-up cigarettes of marijuana, so I never had to purchase any.  I wasn’t an avid smoker of it anyway.  I choked up with it and always landed up spluttering and coughing any time I tried it.

 

I sat and looked at the brochure and decided I would try three different ones.  Two were primarily for pain and one was for sleep since as you know by now, I’m suffering from insomnia.  It is 3:32am now.

 

When I got to the counter, the girl behind it was great.  I saw a myriad of pipes and bongs.  Some of them were beautiful and you could tell that artisans had made them.  I chose a small pipe, and papers to make my joints.  I also purchased a little machine that helped you roll the joints.  It worked great.   In addition, I also decided to vape one since I’m familiar with vaping.

 

I decided that I would vape the one that helped with insomnia,  the other two buds I purchased would be smoked by joint or by the small pipe.  This way, I could keep the three straight in my head and would be able to tell if one was more effective than the other one.

 

I’m here to tell you, this is not inexpensive.  Be prepared to pay for it like expensive medications.  The entire process went smoothly.  Everyone was kind and helpful and I headed home.

 

When I arrived home, I laid out all my goodies on my bed.  I decided which bud would go into the pipe and which one I would roll.  By the way, the buds come in dark jars.  I did not purchase the entire amount for the month since I was going to be trying different ones on each trip until I found a good balance.

 

I decided that although the vape one would be for bedtime, that it was the easiest one to try first since it came prefilled with the liquid.  I didn’t want to waste time trying out the rolling machine or the pipe.

 

I sat on my bed and took a nice deep draw.  Big mistake!  I coughed so hard I was wheezing by the end of it.  I felt blood rush to my face.  It was almost an immediate reaction to it.  I felt myself turn into a jellyfish.  I became sluggish and yes, I was high.  I sat staring at the TV even though it wasn’t on.  At some point, I did turn it on so at least I had a moment of clarity.  The next thing I remember is that my husband came home and shook me awake.  Apparently, I had fallen asleep with my paraphernalia scattered around me on the bed.  That one worked!

 

They all worked to some extent.  You don’t smoke them and suddenly become painless.  Getting high is worth it because you don’t seem to care.  It does lessen the pain as well in the sense that the joints relax your muscles.

 

Overall, I’m still trying to figure out if I will continue with this or not.  I am useless when I smoke.  Time stands still and I don’t function like I normally would.  I’m not sure if I like the feeling.  I wrote down my reaction to each one for my shopping visit next time.

 

 

Lament Of The Flowers

I’m sitting here alone with one lamp lit across the room.  It is 3:24 am.  I didn’t sleep at all last night and here I sit still tapping on my laptop’s keys.  I touch them feeling the tactile buttons giving way to the slightest touch of my fingers.

If only I could manipulate my life like I control my trembling fingers on this keyboard.  I could backspace my way out of some pretty horrible ordeals I’ve been going through.

Have you noticed my absence here in cyberspace?  If you haven’t, then perhaps I am actually sitting here alone throwing up words only to flush them away once I hit post.  Actually no, my words will live on despite what my life slaps me in the face with.

I can feel the redness and swelling of my face from so many tortuous unprovoked abuse of my body.  I can feel the pain in my legs, my buttocks, my lower back, my hands and arms, my neck and head.  I can also feel the pain deep within my body.

My trembling fingers find it almost too difficult to dance across the buttons of this keyboard.  I see two of everything I type as I see two of everything else in life.   If only I could enjoy what I see doubling the affect of good things.

There is so much to tell you but I don’t know where to begin.  I don’t even know that I feel like it right now.  It’s late and I really should try and sleep.  I will place between my trembling lips a pipe of medicinal marijuana, that will help me forget about things for a few hours while I slumber.

I’m drooping now like the flowers in the pot in my kitchen that I meant to dispose of.  Instead the petals lie on the kitchen floor for my dogs to sniff at wondering if this is a treat for them to eat.

For now, I will say good night, or good morning?  It is now 4:00 am.

If all goes well, I will return and tell you about the “so much to tell you”.  There is a horrific process that I must endure first,  if I am to live.  I try not to think about it but the butterflies dancing around in my stomach won’t allow it.  Butterflies shouldn’t be inside one’s stomach.

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?

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.

 

 

 

 

 

 

 

Then Was Then This is Now.

that-was-then-this-is-now-quote-coeurblondeHello again,

I wrote a lot about the pains in my legs.  I also wrote about the treatment I had been getting for these pains both bad and good.  I believe I left off with seeing a new Pain Management Doctor under advisement of my Internist.  The plan with the new Doctor was to go ahead and try another shot in my L5-S1 joints of my spine.  He decided to do it bilaterally, meaning that since each disc of the spine has two nerves coming out of it, both right and left sides, that it made more sense to do the shot on both sides.

It’s been about four days since the shot.  I’m feeling better.  It’s not to say that the pain is completely gone, but I’m feeling almost normal again.  I hold my breath each morning when I wake up.  I take tentative steps out of bed hoping that how I felt the previous day is maintaining the status quo.  Sure enough, it has.  Let’s see how long this last.

Between my Internal Doctor adjusting some of my meds to the maximum dosage and the shots, I think I may land up having a decent summer.  I’m so grateful.

Moving on to other bits and pieces of living life with Multiple Sclerosis.

Many of my medical caregivers are impressed with how I’m still standing on my feet, digging ponds in my back yard, and the list goes on.  They are also impressed with my mental attitude given the history of Depression with Post Traumatic Stress Syndrome.  (There was a time I would not have mentioned my mental illness let alone write it for the whole world to see).

I’m not impressed.  For me, I don’t know any other way to live my life but to fight.  It comes natural to me.  My life has been an uphill battle since I was a child, so fighting to live my life my way is the norm.

I don’t want to write about how terrible MS is.  Sure, it is extremely difficult and can be very painful for some.  Not all of us progress the same way.  I’m at a stage where I’m very symptomatic all the time.  This doesn’t mean I want to wallow in it.  I don’t want to use this written venue to spout out how terrible I feel.

I give you the facts.  I tell you everything I’m going through.  However, I don’t pontificate about the woes of it all.  There are times when I do express my deepest thoughts.  What made me cry, what upset me, and so forth.  But again, these are facts.  This is my life.  This is not a venue, at least for me, where I’m expecting claps on the back for being strong or whatever.

For me, this venue is about educating people about Multiple Sclerosis and what can happen to a person along the way.  Armed with this information, they are aware and can be prepared, should these very issues happen to them.

Sure, there are times when I’m miserable, like these past eight months with intractable pain with no relief in sight.  However, for the time being at least, there is relief.  Should the pain return, then we’ll try something else.

I was delighted that I was able to treat my husband to a Father’s Day dinner.  The amazing thing about it was that I was able to sit on a chair without wiggling the whole time trying to find a pain free way of sitting, and that I sat through the entire dinner without having to get up early and wait for my husband outside while he paid the check.

Then was then and now is now.  What happened before is now history and today is a new page in history.  I concentrate on what is important and don’t bemoan what is lost.  There is no point in it.

This isn’t something learned overnight.  I believe that one must go through a learning period of comprehending this.  When you get tired of hearing yourself talk, then you know it’s time to change your perspective.  When you get tired of reading your own words, then it’s time to change something.

I’ve gotten to a point where I just can’t tolerate being by people who are stuck in a rut and won’t take the helping hand in front of them to pull them out.  They insist on staying there believing that everyone else wants to hear them wailing from the rut, that they can’t get out.  I don’t want to hear about it and I don’t want to read about it.

I am not looking for sympathy.  I’m looking for solutions.  I’m grateful when someone comments about how they like reading my words.  I appreciate that because it takes effort and thought to do it.  I give to you with my words in the hopes that you come to understand the life of people like me.

I try to stay in touch with other MSers but not when they drag me down.  I can’t afford to be dragged down.  If they need help and they ask for it, I will gladly give it to them.  I don’t have the strength to try and pull someone out of the rut if they in turn, try to pull me in with them.

We all have our reasons for writing.  They have just as much right to this venue as I do.  This doesn’t mean we have to like each other’s blogs.  Some of these bloggers are excellent writers.  They use their blogs to satisfy their own needs, whether it is like my reasons or for their own reasons.  Kudos to them.

What it all boils down to is if I’m going to spend my time writing, I would like to think that I do it well and that I give people food for thought.  Other writers are also giving people food for thought.  I’m proud of all us bloggers who write about this disease called Multiple Sclerosis.  It’s important that people read all our blogs to see the effect it has on us at various stages of the disease.  How different we all are and yet, how similar we are.

On Maggie’s Pond

I’m sitting here noticing that I need to clean my keyboard.  I can do that!  I focus on what I can do and not on what I can’t do.  If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into.  Only problem would be is how would I get the dirt filled up after I’m in the hole.  That I can’t do.

Living with Multiple Sclerosis is not a death sentence.  It is not something to despair over.  It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.

What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by.  You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way.  Many people have MS and still work.  Many people, inclusive of those I know; you would never be able to tell they have the disease.  Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.

Let me show you an example.

20180528_173843

I started this pond last year.  My husband dug out the slate for me and put them in piles around the hole that I dug.  My husband helped define the hole for me.

This was my baby.  It was something I wanted to do on my own so that I could feel a sense of accomplishment.  It was something I could do.  It took me nearly two years to do it, but I did it.  I carried each one of those rocks from one part of our very large yard to the pond.  Along the way, there were things I couldn’t do, and I gladly turned it over to my husband.  Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone.  He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.

It wasn’t easy.  It took forever and many small steps to carry stones.  I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard.  I averaged about three trips in an hour and the rest of the time, I laid the rocks into position.  I still have a ton of rocks to go, but at least it looks like a pond.

There were many falls, one where I had to lay there a couple of hours before help came along.  It was okay.  I turned over on my back, watched the clouds and made up a melody in my head.  When I was asked how long I had been laying there, I white lied.  What would be the point in worrying anyone when I was hurting?  The hurt did not come from the fall but from my legs, which started last year.

At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs.  I wanted to work them out.  It didn’t work.

I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth.  Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.

The pond was the ultimate goal but the pond gets built by a lot of small steps.  I focused on those small steps and broke those small steps even further.  I landed up with mini steps.  Those I could do even if it took me all day to do what someone else could do in one hour.

This past weekend, I was like a child excited about going to a candy store.  We went to the pond store where I purchased six Koi fish.  I tried fish last year, but the pond’s habitat wasn’t mature enough.  I waited a lot longer before I finally deemed the pond habitable for fish.

My Take on This

Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life.  Yes, they are disturbing and yes, it seems calamitous.  It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.

I’ve had MS for 30 years, if not longer.  I still work around the house and in my yard.  I still walk with a cane or walker.  I am using my wheelchair a lot more frequently these days.  I have more than likely moved into progressive but I’m not asking if I have.  I don’t care to know.  It’s enough knowing that I have Congestive Heart Failure now.  That is something to worry about.  I’m trying not to.  The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.

If one thing doesn’t get you, something else will.  It’s the nature of life.  We all die.  

It’s how we live that’s important.  It’s what we leave behind that counts.  We live on with the memories we gift people.  I concentrate on quality not quantity.  I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.

Multiple Sclerosis is not a death sentence.  It is just one of those incredibly difficult and painful things that some of us are burdened with.  

I want to leave this blog behind as my gift to the MS world.  It is concise, brutally honest, happy, sad, uplifting, and depressing.  It is the whole of what MS is in “my” life.  It’s different for everyone.  In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.  

My motto is “MS does not define me.  I define what MS is in my life.”

 

One Pot Cooking

It’s here!!!  My card came in making it legal for me to purchase and use medicinal marijuana for the pain I experience because of Multiple Sclerosis and other neuropathies I’m experiencing from other problematic breakdown of my body.  What I need to do next is to make an appointment with my distributor.  It can take a week or two before I can get in.  It seems the facility is quite busy.

For those of you interested in this, it is a somewhat long process from beginning to end.  I would say it took me about 2 months to get the ball rolling and now another couple of weeks before I can get started unless I luck out and get in sooner.  The most important part of the whole process is through your neurologist.  They are the ones who enroll you and get your ID # to fill out your forms.  Without this, you can’t do it.

My neurologist suggested it to me, although I had heard about it.  I didn’t know if I should go that route myself, but he seemed to think so.  When I told my internist that I was going to try it, he was glad that I was.  It seems that in the medical field, there are more doctors approving of this than disapproving of it.  I even spoke to my pharmacist about it and he too was glad.  He told me his father was just enrolled in it and seemed to be doing well on it.

In regard to the pain in my legs, after trying several different drugs that my internist tried me on to no avail, he decided that I should go back and see yet another pain management doctor.  This doctor is one he approves of.  I had my first visit with this doctor this past week and my visit was quite different than with the other facility.  I was talking to the doctor for at least 20 minutes and he examined me thoroughly.  With the other facility, I dealt with a PA and only met my doctor one of the times I went down for a steroid block, just before the procedure.

It ‘s been decided to start over and take it step by step and we will see where this all leads us to.

I will keep you abreast of the marijuana and the new pain management doctor.

I hope this finds you all in relative good health and let me know if there is anything I can do to help you.

 

Ups and Downs of Home

Hello!

First off I would like to thank you for your response to my ongoing harrowing and painful dilemma with my legs.  Nothing has changed.  I’m still struggling with what to do next.  I am waiting for my ID card for medicinal marijuana and I’m curious and anxious to see if that will help any.

My neurologist ordered it for all the spasticity I am having but who knows.  It may also help with this pain as well.

I think I’m going to schedule an appointment with a neuro surgeon to see what they have to say.  I do have an appointment with another pain management facility but I just don’t expect much from them based on my experience with the last facility.  Since my internist wants me to try them, I will.  My husband and I believe that we need to get to the root of the problem and get it handled since it seems that this is not going to go away on it’s own.

I’m tired of talking about it.  I will keep you informed about the medical marijuana experience and anything else new to do with all of this.

How are you all feeling?  I’m tired.  I don’t get enough sleep and when I do sleep, it’s always an intermittent type of sleep–one hour asleep, two hours awake.  I have huge dark circles beneath my eyes.

I’ve been thinking about moving.  Not now due to all the medical issues I am having but perhaps this fall or winter.  Not sure yet.

I have a large 2-story house.  The problem I am having is with all the levels on the first floor.  You have to go up two steps into one room, then down two steps to leave it.  This is all over my first floor.  There is the kitchen, my office, and the small family room that is all one level.  A half bath is also available.  Oh I forgot.  We added on a bedroom to the first floor as well with a full bathroom.  However, I hang out in 3 rooms.  The kitchen, office and family room.  I can’t even go in the backyard without struggling to get down some steps, so I don’t go out often.

I need a rancher.  We don’t want an apartment or condo.  We have too much stuff and we both hate living with neighbors everywhere.

This is about all I can handle for today so I’m going to cut it short and sweet.  I will write again soon when I have more energy.  Right now I’m slumped in my chair and leaning way over to the right.  It’s uncomfortable.

Hugs to you all.