As I look ahead at the week before me, I see that, as usual, it is dotted with medical appointments. The sad part about it is that, I can’t always tell which doctor is for what. The doctor’s names get all jumbled up in my head and I have to think deeply, now what is that doctor for–my MS or for my CHF(Multiple Sclerosis and Congestive Heart Failure respectively)? Another sad part about it is that, for the most part, these become occasions much like an outing to me. Why? Well let’s get back to the topic of what this site is about. MS Life.
A life with Multiple Sclerosis is not all that different than a life without it, if you want my two cents worth. Whoa! I can hear you yelling at me. Hang on a bit and I’ll explain myself.
Come on now. To the world at large, unless we are obviously wheelchair bound; we don’t look like there is anything wrong with us, sitting still that is. Me, it would be a bit different because I hang down to the right, meaning my head and body slouch down on the right side. This isn’t always the case. When I get my Botox injection every three months, I can almost look normal standing or sitting. It doesn’t help that I have ACH (Arnold Chiari Malformation), as well. They had to remove several vertebrae in my neck. I slump because of that as well.
Many in wheelchairs aren’t glaringly disabled. Right? We have to have them. I own one. I use it whenever I know I have to walk around for a long time, or go on trips. People don’t know that we can’t walk a straight line or that the fatigue that sets in is like we’ve just been saddled with two blocks of cement around our ankles, prohibiting us from walking more than a few steps.
What about our “drop foot“? I know that at my worst, I actually was knocking myself right off my feet because my feet were always catching on something that tripped me up. I should wear my orthotics but I’m in need of new ones.
We don’t present as disabled people to the outside world. It’s an uneducated public that we contend with. Still, we go about our business just like anyone else despite extreme fatigue, multiple paresthesias, pain (yes there is pain with MS), and numerous other problems including incontinence. Most of the things we struggle with aren’t glaringly obvious to the world-at-large. We go about our day and not many people will know that we are ill so that’s where my “two cents’ comment above came from.
Life with MS IS not a normal life at all! We just try not to shove it down anyone’s throats. We are polite about it.
We smile, maybe too much.
We laugh, maybe too loud and too often.
We are reliable, oftentimes when we should be in bed.
We run our households, because there is no one else to run it for us.
We look great, thanks to visits to salons or nail places.
We volunteer and step up to the plate, even though people won’t do that for us.
We create and work, like others.
We are moms and dads to our children.
We are husbands and wives and try like heck to please each other.
We try to keep an even temperament, even though we want to scream and yell at the world.
We are charismatic and charming, even though we are weeping inside and craving solitude.
Getting back to my original point about doctor visits becoming occasions for me.
There is such a war that goes on every day in our lives for both healthy and disabled individuals. It becomes more intense for the disabled. (I HATE using that word “disabled” but for lack of another one that describes our daily lives, it’s the best one to use.) We appear one way but our lives are significantly different than the book cover we wear. It’s difficult to explain what I’m trying to get across.
You want to go out, but then you don’t. You want to have sex, but then…ugh. You want to get up and get dressed. Hours later you’re still in your pj’s. If you look at the bullet list above you get the idea. You aspire to do it all and yet you don’t give a fuck if you don’t any of them at all.
We are inconsistent!!! We are consistent in our desires however. Think about it. Let’s say you have a terrible flu. You have a fever. You feel hot then you have the shivers. You want to sleep but then you want to get out of bed. You want to clean yourself up but the thought of jumping into the shower seems like so much effort. You want to clean the house because it’s a pig sty, but you snuggle under the blankets and go back to sleep. Blah, blah, blah.
This is our life. Life with MS. 24/7, 365 days of the years! No getting away from it. It is what is is.
Going out to see my doctors? Hey, it could be great fun or it could be, “I think I’ll call and cancel. Now let’s see. What excuse did I use last time?”
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.
Sometimes 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. 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.
Ah, the new year is upon us. Should we celebrate it or not?
It looms before me and if it was anything like last year, I think I’ll press the reset button on my life and hope it takes me back to before last year began. Six surgeries! I almost tremble at the thought of what this year might bring.
Actually, now that I think about it, I don’t fear the new year. I anticipate it just like I anticipate anything new. It’s like a Christmas gift that one gets where you open the package slowly in anticipation of what it might prove to be.
Just like Multiple Sclerosis. You just don’t know what the year will be like, but isn’t hat true of anything? Rather than fear the new year, I think I will embrace it as it unfolds, like a lover where you run kisses up and down his face until you get the reaction you want. LOL.
I’m sitting here thinking, bring it on! I know I can handle anything this new year will bring me. Perhaps I will get lucky and face only great things. Maybe I won’t be so lucky and have a predominantly difficult year. That’s okay too. I’ve proven that I can handle many things that I thought I couldn’t.
Add to all the physical problems were the emotional ones to do with family. It was a traumatic year for my family which of course, rolled on to me. When they hurt, I hurt. When I hurt, they don’t. Seems a bit uneven doesn’t it? I don’t care. It is what it is. Their pain is mine, at least it affects me as though it happened to me physically.
The ambiguity of life is common to all living things. None of us knows what will happen to us even within the scope of my favorite five minutes, the one that is happening right now. For instance, I spill this cup of coffee all over my computer keyboard and in the process I burn my hand. I don’t care about the hand. I grab something to wipe the keyboard down with or flip it upside down hoping I caught it in time so that the coffee didn’t have the chance to drip down between the keys. Dream on. I’ve never been that lucky. I move way too slow to catch it in time.
This leads to a ruined keyboard. I can’t get through a day without a keyboard since I’m primarily a desktop user. What to do? I could order one online, but I would have to wait a day or two, if not longer, to get a keyboard in the house. I could use my husband’s keyboard, but then he’d be without his and he works on his computer daily like I do. I don’t like it when my battles seep into his daily life, although we all know it does. However, this is something I can do something about. Let his computer alone and deal with my own problem.
This then leads to, should I buy one sight unseen or should I go down to a store? The last one I bought was sight unseen. It turned out to be a nice keyboard, as keyboards go. Should I get the same one? Nah. Things change during the course of a year. Technology changes and I’m addicted to the latest and greatest. Going out to check out the keyboards has a two-fold advantage. I get out of the house, and of course, I get to check out the latest and greatest.
I find my old keyboard and compare it to the newer keyboards. They vary in price and in function. To wired or go wireless? To go with a mouse included or not? You get the idea. One event sets off a series of other events. Should I look ahead and plan for every possible outcome or should I deal with what is happening right in front of me right now?
I can’t sit around and worry about every possible outcome while my keyboard is getting ruined and everything else that is in the way of the path of spilled coffee. I need to take action right now for what is happening right now. I need to mop up the spilled milk, then assess my wet keyboard and so forth. If I take things sequentially and logically, I can deal with it one step at a time. If I think about it and weight all the possible things I can do, in the meantime, what started out as a bad event grows into a destructive event instead of a minor one.
Okay, so all this leads me to think this about the new year. Not to worry. Not to fear. Not even to plan. Planning assumes too many things which turns into worries.
I don’t make resolutions because I have too much respect for myself to set myself up for failure. If I do well with something I would like to improve, this is good. I think that most things that need improvement will take more than one year to take effect.
I will go my merry way, as merry as I can be, that is. One step forward leads to another step forward and eventual destination. Along the way, there will definitely be falls, perhaps some broken bones along with tears of consternation, anger, sadness. This is the story of life.
All of us can lead a life of being disabled or we can choose a life of being enabled. My disabilities does not disable me nor does it define me. My ATTITUDE is what can disable me.
May you find peace, love, strength, laughter, kindness, understanding and all other positive things one could wish for in the new year.
You may have noticed that I did not include health or wealth above. I find that wealth is a matter of subjective ideology. I do wish you wealth, but a special wealth that is individual and not necessarily monetary.
I also wish you health. Once again, health is something we all strive for daily. It deserves it’s own little paragraph because for us, it is so important.
I’ve been neglecting you and for that, I apologize. No excuse is good enough. I’m sort of an on again off again sort of person, but I hope that when I’m on again, I give you value, interest, and laughter as well as something to think about, particularly my input on our favorite subject, Multiple Sclerosis. Actually, there is one wee little bit of an excuse.
I’ve been working on my book and I hope to have it done this month. I was trying to have it finished in December, but that went nowhere. Now I’m shooting for January. I am going to publish part of it as an e-book and then I will publish it in hardcover.
So how the heck have you been? Answer please in the comments below. I would dearly love to hear how you are doing.
Me? Thanks for asking. I have a long list of problems that are plaguing me right now. I am seriously into a relapse. I think the cumulative effect of six surgeries this past year has grouped together and decided to attack me. It was brutal enough recovering from each surgery but now it’s a gang war against me. I hate gangs. I’m not fond of groups either.
Ok, I just heard a loud gasp coming from somewhere. Who was it? Let’s not get in a tiff about it.
There are support groups for just about anything and everything out there. I know that they don’t support me. Probably because I’m not open to them in the first place. I have just cause for feeling the way I do.
I grew up in an orphanage and when there was a major discord in my cottage of 38 girls, there would be a meeting set up to discuss the problem. Or if things weren’t working out as well as the head nun wanted to run things, there would be a meeting as well. There were a lot of meetings.
In those meetings and at a very young age of thirteen, I could make out that these meetings were just a way for the nun to talk to a group of us, time management, to get us to see things her way. Here we were a group of ten or fifteen of us, considered older kids in the cottage, and we would sit around in a semicircle on the floor. You would think that the gang of us against one nun, would once in a while sway things our way. But no, the nun would stand above us girls on the floor and pace around us and intimidate us into promising this that and the other.
What about support groups today? I lost a child to SIDS (Sudden Infant Death Syndrome, otherwise known as Crib Death, years ago. I took the advice of my family doctor and went to a support group. Once again, there we were in chairs while the psychologist tried to hold us together. She/he would pry into our experiences and have us all crying. What was the point of that?
I didn’t want to hear everyone’s story. I didn’t want everyone to hear my story. How could being in a group help one person let alone a group of us? I left after three visits. I tried again years later for Multiple Sclerosis. It was the same thing all over again. What was the point? They certainly couldn’t heal us. Sure, some people loved rehashing things over and over again. They seemed to thrive on that. In fact, they wallowed in it. I, on the other hand, hated it.
I did not want to hear other’s stories. I did not want to hear about another bizarre symptom that someone experienced. I felt that if I listened to these stories enough times, I might start imagining that it was happening to me as well. I also felt that if I heard another symptom of MS and could relate to that person or story, that I would land up running out of the room screaming. No, I was better to wallow in it on my own because in wallowing, eventually I would get tired of it. Once I grew tired of it, I would want to pull myself out of my pity party. That is a positive way to get through it. My inner core personality is a positive and reflective one.
The way I see things is that you have to help yourself. Sure it’s good to find people like you with similar stories, but not to have a pity party. A group would be better served by going out. Go to a movie or go bowling. Anything at all that would make us feel more whole and for a while, feel as though we weren’t alone.
I already knew that I was just a tiny blip in the scheme of things but in my world, I was a huge blip that mattered to me. Luckily, I have the ability to stand outside of myself, take a look at me, and then go about getting the necessary things needed to hold me up. Sometimes it worked and sometimes it didn’t, but for me; that was no one’s business but my own.
MY TAKE ON THIS
Sheesh, I sound so negative here. I’m sorry if I do but I say it like it is. I’m suffering right now and I’m afraid I will need another surgery, so I’m foaming at the mouth spitting at everyone. Didn’t mean for you to get spittle all over you.
There is no positive thing I can say right now. I look over the blog and I can sense a person who is hurting. I don’t know what to say to her right now. If you do, go ahead and support her.
P.S. Don’t feel like proofing this right now. Going to bed. Please forgive any mistakes.
I 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.
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.
It’s been a while since I’ve been in here and I apologize for this. I’ve had surgery for a hernia I mentioned in an earlier note to you and it is taking me some time to recover. Meanwhile, I’m having other medical issues and it all parlays into a miasma of chaos in my head such that I find myself unable to think straight.
Having Multiple Sclerosis just adds to the chaos of all these medical issues and adds to the pain and confusion.
I keep touching on the topic of confusion or chaos. What I’m saying is that it feels like I’m being thrown against a brick wall over and over again and I’m feeling like no sooner do I get over one bruise, another one arises to take its place.
In reading over the last few posts here, I can see that I’ve spiraled downwards into the pity party that I hate so much. Yes, I have thrown one. I never said that I don’t throw one once in awhile. I just didn’t realize it, until lately, that I was in the midst of one. Now how can one be at a party and not see the road that took one there? It’s not a party that I’ve invited anyone to because I already know that people don’t like this type of party, nor do I. So I wrote myself an invitation and attended it on my own. I didn’t even invite family members.
When family members ask how I am, I do the same thing I always do. I bounce off the issues and leave them with the impression that things are difficult, but hey, I can handle it just fine. What’s amazing to me is that the people who are the closest to me are often the easiest ones to fool. Why is that? I think it’s because oftentimes, it is easier to feel that the so-called obligatory phone call, now and then, is sufficient to keep the sense of guilt away at not having touched based with a family member who is chronically ill. I don’t know. It’s not my place to guess at what makes someone else tick. I hate calls like that anyway.
Call me if you have something to say or because you really miss me or truly want my phone company. Don’t call me just to say, “just wondering how you are and blah blah blah.” This is probably a truthful sentence from someone who hasn’t been in touch with you for quite some time, but it’s not a truthful sentence from someone who is just a “let your fingers do the walking” away and could be in touch with you within seconds of any day or night.
Do I sound a bit angry? Yes. In truth. it’s not a pity party. It’s more like an “I’m sick of half truths here and don’t throw them my way because I have enough garbage to deal with.
Is this what this blog is about? No. My mind is jumping around from topic to topic faster than I can acknowledge that I’ve even had a thought on any given subject.
What’s frightening me is that I’m very much aware of what is happening to me which makes what is happening to me even scarier than it would be if I was unaware of it. I can’t even bring myself to talk about it right now. Even if I did talk about it there are so many blissfully unaware insensitive people who will come up with the same inane ignorant comments of things like, “Oh everyone goes through that when they age”, or “I go through that all the time,” or “My (mother, sister, aunt, brother, etc…) went through something like that but then it went away.”
It matters not who the heck has been through it before. What matters is, have they been aware that they were going through it? That paints a different picture on the whole story.
I’m going to quit before I dig myself into a hole so deep I won’t be able to crawl out of it. I need a pain pill. I’m going to take one and hope it knocks me out for a bit. Perhaps when I wake up I’ll be able to see just 5 minutes ahead of me instead of the rest of my life in front of me living in a condition I don’t wish to be in along with Multiple Sclerosis.
Before everything else that can go wrong goes wrong.