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.
Something I haven’t talked about is what’s life like these days. I’m not talking about the medical stuff here, but life! Day-to-day life which is what the blog is all about. I’ve been so concentrated on the pain issue that I haven’t talked about anything else.
I dare anyone to blame me for this.
Here is a weird thing. I decided to buy a 2017 Fiat 500. Why? I seldom drive anywhere. I’m heavily medicated most of the time. I can’t see worth anything especially at night. I don’t have deep pockets of money to spend anywhere. You can’t haul medical equipment in the car. The trunk is too small. You can’t even haul passengers in the car unless they are munchkins with teeny tiny legs. I can’t lift my right leg to get into the car. Surprisingly, the front seat of the Fiat is higher than your average car. So what I have do is this. I found a leg raiser thing-a-ma-jig at a medical supply store. It looks like a loop on a long wired handle. You place your foot in it and pull on it with your arms. It raises your foot up, almost high enough to the level of the Fiat. It works well enough.
My life is spent running from one Doctor’s office to another. It’s the highlight of my life. I get to get dressed in something better than I normally do. I put on a wig since my hair is shot, and some makeup. I look okay for the day. Lastly, I put on my smile that everyone seems to love. As long as I’m smiling, the world thinks everything is okay with me.
I have cleaners come in every two weeks. Will hope to move them up to every week when things get better financially. I’m in the market for a new wheelchair that medicare approves of. I spend a lot of time researching this. Have you seen what’s out there? Unbelievable!!! One costs as high as $14,000. Which is, of course, the one I fell in love with. Anyone care to make a donation?
My Take On This
All is well with the world around me as long as when they see me, I am smiling. There is no such thing as showing a face of pain. If you do, they compare their pain to yours! At first, early in the disease, I tried to educate people. I no longer have the desire to do so on a daily basis. Hence, the reason for the book.
I’ve reached a point in my Multiple Sclerosis where things are sliding downwards and fast. I fought wheelchairs, but now I spend my nights prowling through websites and watching videos on all that is out there, dying to get my hands on one that works.
I watch my life changing almost daily and dramatically. There’s nothing I can do about it. There is only one thing to do.
I smile. It makes the people around me feel better and believe it or not, it eventually makes me feel better.
The night spreads its blanket over the house and the dogs have taken their places for a night’s sleep. My husband has gone upstairs to bed. All feels settled down and calm. I love this feeling where I am with my man in the moon secluded while the stars twinkle around us.
I am watching the time on my computer. Nothing to eat after midnight. I am worried and more than a little scared. With each tick of the clock I am drawing closer to the fact that tomorrow I will undergo yet another surgery. This time it is for removal of 4 discs in my neck.
I am impinged. Meaning my cervical spine is being compressed by offensive discs. They intend to cut my neck in the front, draw aside my esophagus and anything else in the way, then uncover my spine. The discs will be removed and then a tube will be placed where the discs once lived. All will be well according to the surgeon’s standard, but will it?
It’s been nearly four months of agonizing pain. Through the dawning of each day and the setting of the sun, I have lived with this pain, unrelenting and worsening as the days passed, I suffered mostly in silence. However, there have been many days and late nights where I have succumbed to loudly screaming and giving in to the waves of tears that I have held back.
I’ve taken pain pills and waited for the wash of not caring so much about the pain. The pain pills cut into the pain but does not take it away.
Will this surgery help my legs even though the cervical spine mostly controls the upper body? Will I be freed from this unrelenting and excruciating pain? Will I be able to walk with my unstable MS gait but be free of pain? Will I not care about finding a way to sit or lay in bed where I can find some relief? Will the pain of a surgery that takes 3-4 hours give way and give me back my freedom of knowing what it feels like to have little pain in my legs?
I have a million thoughts running through my head. If this doesn’t work then what, I asked my MS neurologist. He shrugged and told me to work with my pain management doctors. I looked at him and burst into tears. I can’t take this anymore.
I will have an EMG exam following the surgery and when I’m feeling up to it to try and isolate what nerve or nerves are being affected. Perhaps I won’t need this painful test?
My Take on This
There is no take on this. It is what it is. I can only wait and watch the clock ticking. I have no delusion or faith that this will work. Hope for the best? I can’t. I’m too tired to even try.
The clock ticks away. I sit here with the man in the moon waiting for then what?
I’ve been away at the ball, dancing around and around with multiple Doctors at one facility or another for over a month. I danced to their tunes for a while but I didn’t like the music they were playing. I decided to cue up my own music and they looked around in confusion. I held my arms out and waited to see if anyone would take me up on the next dance. I decided I had enough of listening to everyone. It was time for me to take control of the ball (pun intended).
Having Multiple Sclerosis is a tough situation. I admit that. We are all hit with one thing or another medically. I listened to every Doctor that walked into my room. It seemed that every Doctor belonged to a group such as Gastroenterology group or Cardiology group and so forth. I never knew which Doctor belonged to each group because I wasn’t seeing the same Doctor twice until I had been there long enough for them to start their rotation over again.
I learned that I had Congestive Heart Failure (CHF). What a scary thought. In the periphery of my eyes I could see the cloaked black figure carrying, is it a scythe? Oh no, now what?
Conversation with self:
Am I going to die?
Of course you’re going to die! Everyone dies.
But is it imminent?
Well it’s imminent for everyone in a way. One could walk out a door and get hit by a car and never know what hit them!
Okay, alright, but do I have to know about it in advance? I’d rather be a person who walks out the door blissfully unaware that the next second I’ll be laying splattered on the ground.
Are you sure about that? Wouldn’t you rather know so that you can get your affairs in order?
No! Well, maybe yes. I don’t know. Stop interrupting my thoughts!!!
Okay. Just trying to help.
Fear is compounded when you don’t know the facts. The longer you lay there watching people coming and going stopping to poke and prod at you, change bags on your pole, hand you a cup of pills making sure you swallow them, the more you lose yourself in fear. If you live a life floating around a dance hall with a partner you don’t know, the more you begin to wilt like a wallflower at the dance.
I threw my dance card down on the floor and stomped on it. Look out. I was about to have a tantrum.
I asked for my laptop and started bugging people for copies of reports. I looked up everything I could about CHF. I started asking intelligent questions and getting intelligent answers. When they tried to speak above my head, I shifted around in my bed as though I was about to get up and use the commode by my bedside. That brought their attention immediately back to me. Then they remembered they were speaking to a patient not a colleague.
I insisted on viewing the tests they were performing on me, if at all possible. I would ask, “What’s that.” I would usually get a response. I learned a lot. I learned a lot about what I wish I didn’t know after a bit.
I learned I had additional problems that had to be dealt with as well. Add a little UTI (urinary tract infection) to the whole mess of things. It’s no wonder why I’m so short of breath.
Every year that slips by I have to contend with more and more medical issues, as I watch in disbelief. I laid in bed contemplating life. I felt myself slip down a spiral of depression although my face never showed it. In fact, the staff commented how they loved coming into my room because I was always so cheerful and attentive to them. But behind that smile and my eyes there was my body moaning and groaning on the floor with a blanket wrapped around me. I would occasionally sit up in the dark room and stare at nothing. I couldn’t sleep.
I was alone in my depression chamber. I wanted to be alone. I didn’t want anyone else in there thinking they knew how I felt. I didn’t want someone trying to put words into my mouth about how I was feeling when in fact, I wasn’t feeling that way at all. People try to be kind, but in truth, they are selfish. They like to hear themselves talk and they think they have some empathetic reason to justify their speaking to me with garbage words. Women are particularly insistent that they know how you feel.
What you need is someone to listen, when and if you’re ready to talk. You don’t want someone to tell you to start talking, or expect you to throw yourself at them in tears blubbering about all that is wrong. Instead, your friends or family start yammering at you about what they THINK they know. What happens then? You are the one who has to be patient and allow them to talk. You sit there and listen patiently to them in order not to seem rude or cause hurt feelings. Suddenly you’re not the patient anymore. They are. They just don’t see it. They are voicing how they would feel given the same situation. I’m not them. I’m not like anyone I know.
How dare anyone compare my life to theirs as though to say “been there, done that.” Of course I know that’s not what they’re saying, but in reality, it feels that way and undermines rather than comforts a person who is already overwhelmed.
Depression is common to people with Multiple Sclerosis. It’s also common to a huge percentage of the human population. Some know that they have it, others don’t. Some know they have it but won’t admit to it, and others do admit it. Some are ashamed of it, others talk about it the same way they talk about having any other malady in their life.
I used to be ashamed of it. I hated having to put it down on medical forms because it’s the first thing Doctors ask women. “Have you been under any stress lately?” Aw come on. Stress? Why only lately?
Everyone who is breathing in this world is under stress. I repeat, everyone. There is good stress and bad stress, but they are all stress factors. These Doctors look at you with expectancy in their faces waiting for you to spill the beans. Once you do, they then go on to explain, “Eureka! This is why you’re sick or think you’re sick.” That’s why I didn’t want to put that down on any medical forms. I eventually got over it.
I have PTSD, post traumatic stress syndrome. It’s put me in the psychiatric ward of a hospital a couple of times. I have a particularly severe form of it. I have taken medications to control it for nearly 30 years now. I had a childhood that was severe. When I told some people a tiny portion of my history, they looked at me in disbelief. They looked at me as though I lied. Even my sisters don’t remember many things that happened because it didn’t happen to them. We were separated by age groups where we were at and my life did not commingle with theirs. We have some similar harrowing stories but I was older. A lot more happened to me and my memory is more clearer.
I stopped talking about my growing-up years. I made an exception to some but spoke of it in a very broad way. Sadly, those ears that I whispered to, listened but did not hear. Somehow, I was at fault in their eyes. To them, I had total control of my teen years and the years I led in my twenties. They have no idea how out of control I was. That I was immature emotionally for my years and that the only decisions I made were based on one reason and one reason only, what was good for them. It was, in fact, the only good thing I did during that time. Yet this is unforgivable to them.
I have been swallowed whole by past memories. I’ve spent long and lonely years alone travelling around the country with no home. I longed for yesterday when I was whole for just a moment in time. I have hurt and been hurt by people and by my own worst enemy, me. I have suffered by my own hands and thoughts.
I lived a life of people not believing me. Not my past history nor my present history. While visiting doctors explaining bizarre symptoms, I could see in their eyes that I had to be malingering. Why in the world did no one believe me? Why did doctors assign it to stress instead of testing me? Why did other people just decide not to believe anything I said before I ever even opened up my mouth? They built a preconceived story about me that no explanation I gave changed. They don’t even know a smidgen of the story and they don’t want to know. All they want to know is —why? Even when they know why, I come out dirty, filthy and unforgivable.
Depression is a real illness just like any other diagnosis. If you don’t get it taken care of, you will get worse. If you don’t admit it to yourself first, then you won’t get better. If you don’t reach out for help, no help will be given to you. You know when you have depression. You don’t at first, but then it dawns on you. It’s at that point that you need to seek help.
I tried to get help the wrong way. I believed in people. I believed that if I was open and up front with them, it would ease my pain. But no! Of course not! Their pain was so much worse than mine. Like I said. They had predetermined who I was and nothing I said was going to change their minds. They treat neighbors and coworkers better than I.
People in life were able to manipulate me for a long time. I was always a highly intelligent person but at the same time, a very immature person emotionally. I wanted love so badly that I would allow myself to be berated and stomped on if only for just a whisper of a smile, a hand held out at the ballroom dance floor from someone looking at me with love in their eyes.
I didn’t want to dance the tango at the hospital or in my life. I wanted to waltz. I didn’t want the push and pull, the “I love you’s and then the I don’t love you’s.” Worse yet, “I love you but…..” The setting of conditions.
I took control of my decidedly difficult time this past couple of months. I’ve also taken control of other medical issues including depression. It rears its ugly head up now and then, such as now. I know what to do about it.
I choose to dance with the “Man In The Moon” from a previous blog who looks down on me and never gives me conditions to live up to or challenges the very core of the person that I am. He accepts me in the darkness of the night and invites the stars to shed some light so that I can see my way to him.
I prefer the night and the beautiful peace of solitude creatively spending my time with my God-given gifts than to sit around and wonder about people. I don’t have time for the games that people play and I’m not putting up with it. I haven’t put up with it for years with the exception of one, whom I’ve finally let go. I refuse to reach out to anyone anymore. They know where I am.
During times like these, you come to value what’s truly important. People once were, and with the exception of a few, they no longer are.
Do I sound like a bitch or cruel? Perhaps. It’s not in my plans to give it another thought other than getting it out here on paper to make myself read if not heard. If no one listens to the words I am speaking through my writing, that’s okay too.
I go to the night where I can see the light of the pure soul that I was and that I’ve regained. I’ve dusted it off and shoved it inside next to my literally broken heart and my metaphorically broken one as well.
I have had so much time to think lately. I don’t think I care for it. The gift of ‘thinking time’ comes along with a lot of pain from recovering from one thing or another which as you know means pain. There is no right answer as to whether this prolonged period to think about things is good or bad. I would hazard a guess that it’s both.
I had a fall the other day. It was because I bent over to pet my dogs while standing and not holding on to something. Dogs being dogs were excited. They were jumping up at me and leaning up against me to get their share of the petting. I lost my balance and fell forward onto my hands and knees. Mind you, these dogs were not a large-breed dog but two tiny Chihuahuas. I weigh a lot more than they do but these days, a drifting feather could knock me over.
It took a friend’s help to get me up off the floor. I couldn’t figure out why I couldn’t stand up on my own when I could before. I tried my usual technique but gave up and called my friend. I had injured my knee, nothing major, but enough to prevent me from getting up. There was simply too much pain. My friend asked me about my wrists and I told her they were fine but yesterday they started hurting as well, particularly the right one. This just happens to be the one that has carpal tunnel syndrome.
I had a carpal tunnel repair on my left wrist about a year ago and I should have done the right one as well. I was too afraid to be without both wrists at the same time.
You know what I hate? I hate that the last few blogs of mine sound and read like other blogs where all people do is complain about issues…all their aches and pains. However, in order to explain all this time I have to think, I need to go into how I have this time in the first place.
Normally, I keep busy with a dozen different projects but with all these surgeries, falls, and the ongoing recovery not only from the physical aftermath of such activities, the repercussions that it has on my Multiple Sclerosis to boot.
My Neurologist tells me that it takes anywhere from six to eight months to recover from any one of the things I’ve gone through to get back to baseline in the MS sense. The way I figure it, I’ll be in my grave snug as a bug with the critters therein, before I catch up to my baseline.
Another year flips over on the calendar for me tomorrow and perhaps that is why I’m thinking about time. Time past, lost time, wasted time, and all the other zillion words you can place before the word time.
What’s bugging me right now is wasted time when time is a hot commodity in my lifespan. I know! I can hear you shouting at me! “What about five minutes at a time?”
“Hey, it’s my rule and I have the right to break it occasionally!”
Do we all do this, I wonder? Do we change our inner lives to meet the expectations of someone else in our life? Is this being true to ourselves? Have we lived a lie? Have we just settled? Have we become so adjusted to someone else’s life that it becomes what we perceive to be what we desire?
If we’ve been happy, how much happier could we have been had we been true to ourselves? If we’ve been partially happy, the same question. If we have known all along that we weren’t living the life we wanted to, why did we do it?
Is it easier to lie to ourselves than to admit to our self that we’re unhappy because then we would feel compelled to do something about it? Worse yet, what if we knew we should feel compelled but decided not to change a thing? Was it easier to make do?
Worst of all, what if the person we were with was the person we wanted to be with but that person was not capable of living in your world? You had to conform to be in their world! Would that make you a self-sacrificing person for love or would it make you simply stupid?
Is this what happens to someone who is sitting around waiting to heal? Think about things that require answers if you want peace of mind.
I’ve taken all this time that I have to answer some of these questions that pertain to my life. It came as a surprise to me, some of my answers. Let me rephrase that. Put on paper, it gave me clarity where I wasn’t necessarily looking for clarity.
You see, I had some time on my hands. Did I waste my time? Nope. I think whether you have Multiple Sclerosis or some other disease that has you sitting around with time as a companion, that you may as well answer these questions, and then a whole slew of other questions I’m sure will occur to me before I go to meet my maker.
Maybe this is the natural process of aging. We can do less, so we think more. Which brings me to my last question.
Why could we not see so clearly when we were healthy?
Adrift sitting in a small boat in the middle of a calm ocean, I languidly lean over the side of the boat and place one of my hands in the water. I see something swim by larger than a breadbox and I rapidly draw my hand back. What was I thinking if I was thinking at all? My hand and fingers could look like tasty bait for a hungry fish.
This scenario, of course, is all in my mind. It’s my way of taking myself outdoors. Reading and writing were my way of escaping the traumatic daily life of my young days in Chicago and I’m drawn to it once again. There was music as well.
I speak of escape because as a shut-in, I have no other avenue of getting out of the house unless someone takes me. Multiple Sclerosis is an anchor in many ways keeping me going around in circles and seldom allowing me to go in a straight line to places unknown for fun and adventure.
Picture yourself in the middle of the ocean again, with the sun shining down upon you, the backdrop of the city just beyond the horizon. At first, you love being on that boat gently rocking and listening to the gentle slap of waves against each other or on the side of the boat. When it’s time to go, you find that there is a heavy anchor that has kept you in place. You didn’t notice it because the movement of the boat and the water gave the illusion that you were moving, as indeed you were but you were not travelling.
You notice storm clouds rapidly approaching you and the wind turns from a warm caressing touch to a cool blowing slap as your hair dances in many directions each tangle having no supervision as to which way to head. It gets darker and rain starts pouring down. You huddle in the boat trying to make yourself as small a target as possible when you see lightning strikes across the sky that pushed the sun out of the way behind the dark clouds.
You hang on to the sides of the boat as it bobs up and down careening wildly almost dumping you over every few seconds. If it weren’t for the fear of falling overboard, it might have been fun. What is the point of this story?
For several weeks I have been on that boat in a storm. Life is difficult enough for people without the anchor of Multiple Sclerosis weighing them down, but when you have MS, sometimes what seems like a warm and sunny day out actually is a blip in time that precedes the storm that is about to hit.
In the past three years, I’ve had about five or six major surgeries. Two of them have been this year. These surgeries have nothing to do with MS but they have a major impact on what MS does to you as a direct consequence of physical stressors in your life.
You go about your life doing the best that you can, just like everyone else despite having a disease and then out of the clear blue, a storm hits. You can try running for cover but that only keeps you from getting wet. It doesn’t stop the storm. You have to wait for the storm to stop. The storm is not waiting for you to stop hiding.
All these things that happen to all of us, whether we are prepared for it or not, have merit in the lessons they teach us. They don’t necessarily teach us how to be better prepared for the next storm because you never know under what circumstance the sunny day turns into menacing one.
I believe that the most valuable lesson I take away from weeks like I’ve just experienced is that there is no point in panicking. There is no point in throwing a pity party that no one will attend, or if someone does show up they won’t hang around for long. There is also no point in longing for the hour before when you were languidly basking in the sun just as there isn’t any point in trying to look ahead to figure out when the storm will end. I mean who can figure that out precisely?
You and I both know that there will be good days and bad days. There will be days when you feel like a prisoner in your own home and days when you’re so happy to be out that if you could hop and skip like the little girl you once were, you would. There will be days when you’re feeling strong and days when you’re weak as a kitten. There will be days when you feel like you’re moving ahead and building a life for yourself despite all the blips in your life and days when you feel like you’re just going around in circles.
Right now I’m fighting a heaviness inside of me. It’s a difficult battle that hits me unexpectedly at different points in my day. I recognize it for what it is and it’s called depression. Thankfully, I have been on medication for this battle for many years. I’m not ashamed to admit that I have it. It’s common to all people with long-term illnesses. I just chalk it up to yet another symptom to contend with.
In addition, I’ve had another surgery to fix a surgery from my recent past. I walked around with a bag hanging out of my stomach for two weeks which was removed. Then I experienced pain in my abdomen and could not figure it out. I struggled with this pain for two weeks before I finally saw my surgeon. He figured out that I had fluid built up and sent me directly from his office down to get scheduled for a procedure where a bag was placed again to drain all the fluid out of me again. A short office visit to remove staples turned into an all day affair of yet another surgical procedure.
MY TAKE ON THIS:When you're having an ideal day, week, month keep in mind that the
unexpected storm is just around the next corner.
No you don't live your life in fear of it, just aware of it. You
don't fear it because when you're in a storm, you know that
eventually it will die down and the sun will come out again.
In regards to being housebound? There is very little that can be done
about it. There are always cabs, and other services available but if you're
anything like me, I personally don't like to travel with a crowd of people
where I am dependent on them getting to the bus on time or where I have to
get to the bus on time for them. I like independence.
If you want to you can, if you don't want to, you won't. Solve your
problems, I mean. It's a matter of attitude and how you want to live your
I'm determined to live mine looking forward to the sun that will come out
after the storm.