I apologize for the delay in getting back to you but things have been a bit crazy around here.
So how are you all? It’s funny because I just realized that I’m sitting here waiting for a response from you ….. duh! I do wish I could reach in my screen and grab your hands though. Talk about a touch screen!
I’ve been struggling with some medical issues that have nothing to do with Multiple Sclerosis and yet everything to do with Multiple Sclerosis in that it affects it. That sucks in a big way doesn’t it? It’s bad enough you have toothaches or what have you but then you have to deal with the stress of it all which then leads to your MS rearing its ugly head. Even if there is good stress. Stress is stress and it all affects you with MS. So whether you are down or exuberant you are going to have to deal with your symptoms.
Usually I have strong coping mechanisms in place but for some reason not so this time. Do you ever get sick and tired of being strong? How about sick and tired of being sick and tired?
I am the strongest person I know whether they have MS or not. Truly. I am. I have been dealt with so much over my past, that it’s trained me to deal with just about everything! Top that off with that I didn’t have a family to help me out and you land up with a female Hercules! But you know what? Right this minute, I feel like I’m tottering on the edge of a cliff. I could fall either way–over to the bottom of a deep chasm or on the safe side and just plop down onto ground. You might be wondering why your blogger is speaking in this manner when she is always so upbeat, at least 90% of the time. Let me clarify that for you.
Pain! What do you do with intractable pain? It is there 24/7. You can’t run away from it. You can’t medicate it, at least not permanently. You can’t box it and send it away. Even the Doctors don’t know what to do with it. They all stand there with their prescription pads in hand ready to dish out whatever it is I want. I’m not talking about MS pain right now. I am talking about other medical issues which are causing me great pain for going on 9 months now. I wake up with pain and I go to bed in pain. I sleep maybe two hours at a time, then I’m up for several hours, then doze for a bit. I can fall asleep standing up. So now they say I have narcolepsy. You have got to be kidding!
So let’s get back to coping mechanisms. Usually I can rely on myself to pull me through. Why not this time? I’ve been thinking about this quite a lot these past few days. Why do I feel like a crying puddle? Then I realized that everyone I know is hurting right now. They are hurting emotionally and physically and not necessarily due to MS. One friend has MS and she is struggling right now. The rest of my friends don’t have MS but they are all in crisis right now. So why does having friends in crisis affect me and my stores of strength? I think it’s because I’m always out the door tending to them. Somehow I don’t see myself as needing help but giving help. Before I know it, I’m a mess.
Does that make any sense? I realized this the other day. I decided to try an experiment. One friend, in particular, is of interest to me. I have tended to them so much that they are practically dependent on me. Not a good thing. So when I was going through a particularly difficult time where I was laid up at home, this person promised to come over and help me out. They told me that in no uncertain terms, they would be here. I put on my fuzzy slippers and went to the front door and unlocked so they could come in without me having to get up again. I waited. I waited. Oh, and then I waited some more.
I did not receive a phone call telling me they couldn’t make it. They decided it was too cold to go out and didn’t come. A whole slew of things went through my mind, most of them bad. It was then that I realized how independent I had become when it comes to accepting help. I’m so independent that almost everyone doesn’t think of me as a person who could use some help, or company, or whatever. What a funny conundrum.
So I shook myself out of my doldrums, took a pain pill and decided that I would not help this person this week. This was not an act of revenge but an act of having mercy on myself. In a way, I am at fault. I have everyone thinking of me as the rock of Gibraltar, so they don’t think that I could use some heartfelt love in the sense of care giving. Actually, no one is to blame. It just is what it is.
One person came to my emotional aid. They dropped everything to give me a talking to. I truly appreciated this. But to my dismay, a few days later, they emailed me and told me that they could not handle worrying about me and worrying about themselves at the same time. So for the time being, they would be severing communication with me. Do you get this? I do. I know this person. They are weaker than I am and they are right. What they are doing is preserving themselves for themselves.
Okay, so let’s turn this around. Everyone has their reasons for giving or accepting help from one another. Right? When you do someone a favor, you are to do it with the full knowledge that they can’t ever repay you and that is supposed to be okay. At least that is what I heard on some webinar the other day. I say that’s hog wash. It’s only human to want a hug back if you give a hug. Right?
I’m not a saint. I don’t give of myself just because. I give of myself because it comes natural to me. When I give, I receive. I get something out of it. I like what I get, the feeling it gives me. I lay down at night knowing that I’ve done some good. I don’t think that I will try that experiment again, waiting to see if someone will come running to me. It’s too disappointing. I don’t mean to sound bitter because I’m not. I would just rather not know that people are basically centered in their own world. Even a person you thought was so all giving turned out to be someone who has themselves in the center of their world with no room for anyone else!
I’m trying real hard to turn this into a positive, but when it comes to illness, people react very differently than one would expect. I don’t want to feel that I can’t trust my circle of friends, but when it comes to the really deep stuff you really are on your own. At least I am. That’s a lonely feeling.
I’m here to tell you all that despite a few surprises with people during this trying time, I have undertaken a project and placed it squarely on my head. I am going to help a little girl and all little children who are suffering from a rare form of Type I diabetes. Be on the look out for promotions on this. I have been all over the internet and have some major websites supporting me. I am so happy about this.
So from the deepest darkest place in my heart where I hung out over the past few days, I dug myself out by doing what comes naturally to me. I took myself out of the center of my world and placed someone else in there. That is much better and from this position, I can feel the world going round and round. When you’re in the center, you watch the others going round and round. I would much rather be on the sidelines enjoying the ride!
A few days ago, it felt like I was getting a toothache. I thought, *Oh brother, this is all I need.” It was mild though and as the day wore on, I didn’t give it much thought although it did bother me on and off.
When I woke up the following morning and looked in the mirror, I saw Jay Leno. I’m not kidding. My jaw was so swollen and distended that it had the appearance of a Jay Leno caricature. Misery set in.
I was in excruciating pain. By that night I was crawling the walls in pain. I felt it up and down my back the pain was that intense. I tried every pill I had in the house that I thought would help, but nothing did. It became time to call for an emergency Dentist. I think I called about 8 or 9 dentists leaving messages at each one and did not hear from one. I was then thinking about going to the emergency room but held off. I didn’t know how much long I could withstand that level of pain.
I was terrified of what was happening because I heard from a friend of mine that he had a friend who was in a similar position about a year ago. She too had excruciating pain and then was finally seen by a dentist. However, in the meantime unknown to her and her dentist, the abscess fluid had penetrated into her blood system and a few days later she died.
I thought to myself, “I will not die from a tooth of all things!” I was in extreme fear of what happened to my friend’s friend though. Just a couple of years ago, I almost died of sepsis myself from surgery. I was in the ICU for about a month before I was able to pull through.
The following morning, Dentist’s offices began to call me, where I had left messages the previous night. I took the first Dentist who called and made a trip out there. Sure enough, I had an abscessed tooth. Apparently, one of my teeth had broken partially off which created an environment for an infection.
I was placed on antibiotics and pain pills. By that same night, I still felt no relief despite the strong pain medication that I had. The Dentist had me come in. We decided to pull the rest of the tooth out hoping that the fluid buildup would migrate toward where the tooth had been pulled and thereby alleviating the infection and the swelling.
No such luck for me. I had an appointment in New York the following day to see a specialist for yet another disease possibility added to the M.S. one. I was not about to call in sick to that office because I had already waited three months to get in.
I went and I survived.
I’m wondering if M.S. accentuates one’s pain threshold. Does anyone know? It’s not as though I was screaming out loud, but I was intense pain such as you get when you stub your toe…
I did manage to get up to New York and keep my appointment. I’m holding my breath to find out the results of that meeting. I sincerely hope it does not follow my pattern of bad luck to good luck. I prefer that it is good news. I kept a smiling (though a lopsided one) façade.
I believe that you are what you believe. Simplistic yes, does it always hold true? Not always. However, it is the philosophy that I live by. You would be surprised how having a preset mindset can help during occasions such as this.
In the face of all this, a day in New York turned out to be a nice day. Pain? Yes! A determined attitude to live with it? Yes. This culminated into a fun day.
UPDATE: It is now two days since the day in New York and 5 days since the outset of this infection. I’m still in pain, although not quite as excruciating. I will have to have the abscess cut into in order to take the swelling down.
Onwards and Upwards. Sigh…..
It has been so very cold here in New Jersey. I’m not native to this state and have been here, I think, about 9 years or so. This is the coldest winter I’ve experienced here. I normally don’t talk about weather because I feel it’s just something people talk to each other about when they don’t have much else to talk about. However, this weather has a huge impact on many people I know, myself included. Heat is worse, but this is bad as well.
Isn’t it strange that we who have Multiple Sclerosis are so affected by weather? I wonder what causes that. Should I look it up for you? Yes? Ok! I’ll be right back.
I’m back and I did find that references to cold weather and MS were far less frequent than MS with hot weather. I did find this interesting article here at http://www.ehow.com/facts_5299699_multiple-sclerosis-symptoms-winter.html Here is part of a paragraph from that site. “…..extremely cold winter weather can cause fatigue, loss of strength, difficulty walking, rigidity, stiffness and numbness.”
I need to apologize to a friend of mine. She has MS and has locked herself in her place refusing to do anything where it entails her getting dressed, getting in the car, and doing something. She kept complaining that it was too cold out and that it truly was bothering her. I found it hard to believe because I wasn’t affected by it, or so I thought. I should know better than to be disbelieving of someone just because I don’t experience the same symptoms. But when thinking about it, I have been really hurting lately in my joints, particularly my knees. I also have this overall stiffness. I just thought it was something to do with arthritis as we all get older, but now thinking about it and doing some research, I realize it could be something to do with MS as well, probably a combination of the two.
How are you all doing in this weather? It would be interesting to find out.
I think it effects my cognitive powers. For instance, tonight I needed to go to the local WaWa which is maybe 4-5 miles from the house. I’m still able to drive but I don’t know what I was thinking when I got in my car tonight. First it was dark. I don’t do well in the dark because of my vision. I’m not very tall and even though I drive a small Volkswagon, the steering wheel is too high for me. I do lower it down but then there is the additional problem of sitting low in the car. This is a problem because all headlights come right at me and it’s difficult to see. I had no business driving.
So with the above problems; add to that the cognitive issues. I got in the car and began driving. It was drizzling out and I had the windshield wipers turned on. It was dark and dreary and trying to filter out the oncoming lights was problematic. When I saw that traffic has cleared that was going in the other direction where their headlights assaulted my vision, I bolted out into my lane taking a guess as to where the yellow line might be. I was in a hurry because I needed to get dinner in the oven. I decided to take a shortcut. Two seconds later I was lost. How can I be lost in my own neighborhood? One half hour later, I finally found WaWa. I made my purchase but this time I was able to retrace my steps.
Why am I talking about this? It is because it’s one of the things I fear. I don’t want to lose myself due to this illness and go into dementia like so many others have. Also, I’m afraid that I won’t be able to compose music nor play it. I’m hoping that if for some reason I become locked up inside of me, that I would be able to find my way back to me. I’m comparing the story of tonight’s being lost drive to how my brain might be affected by this disease the older I get.
You see, I passed my house at least once during this lost episode with me. I didn’t realize it at the time though. How could I have missed my house? Had I known I was right there in front of my house, I could have just forgotten going to the store and gone home. So at this point, I was lost, but wasn’t lost. Does this make sense to you? It was a complete and total blackout of the sense of me, who I was, where I lived, etc. This troubles me a great deal, at least it did a few hours ago.
Why am I not so worried now? I think it’s because the fighter in me won’t accept the things I fear. The fighter in me always surfaces. Most of the time it wins and other times it disappoints me as I wallow in all the things I can no longer do.
There is a fighter in all of us. We just have to acknowledge that it’s there and give it full rein when we are at a low point. If we do that, we can overcome whatever issue lie in front of us. My fighter is strong and always picks me up and places me back down on the right path. Just like in my car tonight when I finally just trusted that I would find my way home.
I am so frustrated. Why is it so difficult to learn new things? Wait a minute. I know the answer to this. It doesn’t change my frustration though.
There are days, like this one, where I waste hours on trying to learn something. My mind seems to be working correctly, however when I try to put what I learn into practice, it’s as though I haven’t learned anything!
Retention? Sequential thinking? For instance, I would dearly like to upgrade and make some changes to my beloved blog site in Word Press. This site! I bought two Word Press books. I’ve been researching all the Word Press site and all the Knowledge Base info. I think I know what to do and then when I’m in here, it all flies out the window. I try this and that and then preview it, and it’s a mess. I have to back it all out. Before I know it, hours have passed. I’m sitting here thinking, I’ve wasted all these hours and what I really should be doing is connecting with you.
What a waste of time! Not you, of course, but trying to learn. However, I am here to tell you, that everyone needs to keep trying to learn no matter how frustrating it is. The act or the process of trying to learn is in it’s own way a way to keep your mind working. Okay, if you’re like me, maybe you don’t end up with the wanted outcome. But you have to say to yourself, “hey I at least tried, and in doing so, I’ve done something good for myself.” So all is not lost.
It’s like taking your brain to the health club. You take it there; you work it out; you don’t see results today, but hey if you keep doing this, eventually you may see some improvement or you may prolong worsening of those particular symptoms.
Face it. I think we all have cognitive problems with MS. I know I do. Big Time!!! I don’t let it stop me. I keep plodding along doing the things I either want to do or know I should do even if it’s questionable that I’m capable of doing it. Okay, so I spent the day frustrating myself. I had to walk away from my computer before I smashed it to smithereens at one point. Surprised! Don’t be. I can get pretty angry some days. Chatting with you has calmed me down….somewhat. I only wish you would comment. Not enough comments on here.
Well don’t be surprised if one day you tune in and find the site changed! It may mean that your hostess, me; has learned something new or more than likely this; she hired it out. LOL.
There is one thing I’ve been meaning to do. Change the font for those of you, including myself, who have a difficult time reading. I can do this! Alright!!!
I am so pleased that we are still going strong on this site. I am thinking about revamping the site when I have time. TIME? What is that?
It’s a fact that I am an extremely busy person. Why? Because I choose to be. Why? I would rather be too busy than sitting around contemplating all my problems? Why? Because if I allow myself to do that, I will really really get depressed? Why? Because I have depression? Why? I have had a sad life growing up and now I’m sick. Why? Because God thinks I can handle more than I think. Why? I don’t know, ask HIM?
It is true. I keep myself busy so that I don’t have time to think and ponder. I also don’t want to get more depressed than I already am. Someone said to me the other day that “no way, you don’t have depression!” I do. I have had depression for many years. It was so severe, that I have been hospitalize three different times for it and I’ve been on medications ever since. I gladly take the medication because I never want to go back into that hole I was in before.
Did you know that depression is a symptom of MS? Check this out! I took it off of Web MD.
Why Do People With Multiple Sclerosis Also Have Depression?
Depression may be the result of a difficult situation or stress. It is easy to understand how having MS, with its potential for progressing to permanent disability, can bring on depression.
Depression may be caused by MS. MS may destroy the insulating myelin that surrounds nerves that transmit signals affecting mood.
Depression is also a side effect of some drugs used to treat MS, such as steroids or interferon.
Interesting, isn’t it? I did not know this for a very long time. Here I thought that I was depressed for other reasons, which I am, but I never connected it with having Multiple Sclerosis as well until one of my doctors told me.
You need to know this. It truly is important for you peace of mind. If you are anything like me as I was back when I was first being diagnosed, at the first mention of psychiatric issues I became irate and was ready to jump down all these doctors throats. I assumed that they were saying that I was wacko. Some were indeed, but not all of them. What they were actually doing was trying to link all the symptoms to one disease and depression is a symptom not just a diagnosis. Let me repeat that. DEPRESSION IS A SYMPTOM NOT JUST A DIAGNOSIS. So the next time a doctor asks you if you have depression, if you do; admit it.
I have to admit though, that if any doctor talks to me about depression I still have this desire to throw myself at them and punch them out. I think it is because over the years, as I am sure all women know, doctors have a tendency to first diagnose women with depression and then they consider other things. I can’t stand this. I just bridle at the thought that they treat women differently than they treat men.
I read an article not too long ago about if a man goes to a hospital complaining of chest pains, they immediately go into action and assume he is having a heart attack. If a women goes to a hospital and complains of chest pain, even during the admitting process, she will be asked “What did you have for supper?” Or the second scenario is “Are you under any unusual stress?”
What I have been answering to the second scenario, “Are you under any stress?” is this. I ask them, “Tell me one person who is not under stress. Have they all had a the same symptoms as I do?” I mean come on already! I could be in the admitting office with a temperature of 103 with a nose that is beet red from sneezing an apparent victim of the flu. Still they ask, have you been under any stress?
Hey, wait a minute! We need to have a party. How do we throw a cyber party? Anyone know? It is an anniversary of sorts having reached 100 posts. You all know that my posts are seldom less than 500 words. I do go on and on so you know it takes some effort to do this.
Have I meandered in this post? I think I may have but I’m too tired to take my mouse and scroll up to look at the previous paragraphs. I know, I know, I’m probably not making much sense today but that’s okay right? I think I am a bit overworked.
I will let you in on a secret though. I am working on a project and if it works out, I hope that it will benefit you, each and every one of you. That’s all I’m going to say about it right now.
Okay, I think I need to go off and take a rest. Have I said anything meaningful today? Okay, I know you can’t see me, but my fingers stopped typing and there was a long pause as I tried to think about what I’ve just written. I can only remember as far up as the paragraph above, so I don’t know. Guess What? I’m cognitively struggling today!!!
Onwards and upwards. This too will pass until it comes back again. Congratulations, (I did start off with this didn’t I?). Congratulations to all of us for enduring said author with her 100 posts.
Wow! I have so many pokers in the fire that I think I will burn down the house if I don’t get my act together. The problem is that I have so many notes that I can’t figure out what notes go with what projects. I am always forgetting to write down what and who the note is about. There are phone numbers by themselves, names by themselves, all sorts of snippets of information that make no sense but did at the time they were written. With difficult cognitive problems, it’s no wonder I’m at a loss. I’m sure you know what I’m talking about.
I have good intentions. I give myself a talking to as if I were a bad employee. I tell myself to write full sentences and attach names to phone numbers when I write down my notes. I start out well in the morning but by afternoon; I’ve done it again. Notes are everywhere and they don’t make any sense. I save them in a pile and sometimes I get lucky and a person calls with a name that I can attach to a phone number. Then again, I often forget to look in my pile of collected notes and don’t see that I already have a number that begs for a name.
What’s a person to do? How do I fix this? If any of you out there have an idea, I would love to hear it. Meanwhile, picture me here under a mountain of notes with a huge question mark on each one.
How do you handle it? I would rather deal with the black of night or the gray/green of a storm than days that are just gray.
I don’t know what it is about gray days, but they drag me down. It’s bad enough to be struggling with depression. To contend with days, one after another, that just compel you to feel blue is something that drives me nuts. This is not just for people with Multiple Sclerosis, but it happens to everyone I know.
We all know that things that occur to your average person is multiplied times x for people with MS. Having to deal with days such as these is of particular interest to me.
I wonder what you all do with these days. I would love to hear from you about it. I have one friend here who simply stays in her pj’s all day and night. Don’t you think that would compound the problem though? I do. I would like to give myself a chance to pull out of a day like this. If I were to stay in my pajamas, then I’ve given up before the day has even begun. In other words, I am planning to have a bad day. If I plan it, then I make it happen!
We have to fight it along with everything else. At least I do. You know me, I don’t want to give in to anything MS or not. But there are days like today, when I just don’t have the energy nor the “want to” to fix it. I want to stay in my pajamas. I didn’t. I should have.
Here is what I usually do with days like this. I always have something to do that is laid back to kill the time. There are some things in life that are perfect to do on days like this. For instance, reading is one of them. You get all your goodies set out on the coffee table. Grab a blanket and a pillow. Then settle in with a good book.
Knitting is another favorite of mine. Nothing like chasing away the blues with doing something creative but where you don’t have to think too hard. If you are new to knitting, it might be frustrating so find something else.
Painting is another nice thing to do. I get out my oils and have at it. There are any number of things a person can do. Another favorite is to catch up on all my recorded television programs, again with the blanket and pillow.
Most people opt for sleeping away the day. I can’t do that although I wish I could. My body simply won’t allow me that luxury.
Sooooo—what do you do with your day?
Ultimately, I feel that there is no right or wrong thing to do on this day or any other given day as long as at the end of the day you feel good about it. Yes, you can feel good about wasting away a day! I do! I mean we work hard in other ways so why not give ourselves a break?
So here’s to all our gray days where it gives us the time to do whatever we darn well choose to do with it. It’s a good thing to look forward to days like these where we can bask in nothingness.
Friendship? What does it mean for a person with MS? I can’t tell you what it means for you but I can tell you what happens to me and what it means for me.
I have a multitude of friends but I only have a handful of friends. Does that make sense? Sure it does, when you think about it. Perhaps I should rephrase this. I have a multitude of friendly acquaintances I can count on one hand. These are the ones I consider to be my friends.
It’s not as though I am unwilling to accept friendship but it is a matter of how much I want to work at it and how much they are willing to put up with. After all, having a friend with Multiple Sclerosis isn’t easy to handle for most people. They think they can initially, but then it begins to wear on them. I know this because even though I have Multiple Sclerosis, I have only one other friend with it. Why? For that very same reason I just said earlier. It begins to wear on me because she behaves differently to her disease as I do mine. Heaven forbid I should have more friends with MS. I would not make a good friend. I can only handle one at a time. With knowing how I react to a friends with MS, I can only assume that others would react the same with me, whether they have MS or not.
Here I am with some friends and what happens? I’m terrible at it. Was I this way before MS? I think to a degree. What way am I talking about?
I struggle with the symptoms of MS just like everyone else. This means that I can’t be relied on to do anything at a specific time and place. One minute I feel like going and get done up, the next minute I am laying down in bed deciding that I can’t do it. Sometimes I go here and there with my friends, and before we settle in, I decide that I must leave. When my friends call and ask me what’s new? It irritates me because nothing is new. I ask them why they are calling. They respond with, “I just wanted to touch base and say hi”. I think that I make them feel this is a waste of my time.
Part of the problem is that I hate telephones. It is a necessary evil but for me, I use it to call for help or to get information etc. I don’t use the phone to keep in touch with people. I would much prefer to see them. I also have social networks, like Facebook and Twitter. I am seldom on there. Again, I find it necessary to have these internet connections, but I use them primarily for getting ahold of someone that I’ve not been able to get ahold of because of distance, like my children. They are the accept ion to all my habits.
People will finally reach me and say that they have left a dozen messages on my cell phone and act hurt because I’ve not returned their calls. I tell them that the phone is not attached to me and that I don’t turn it on unless I am in my car in case of emergency.
To be honest and at this stage in my life, my closest friend is the lady who has MS. It’s a natural thing to happen. Although she behaves like everyone else when it comes to phone calls and such, there is still a connection that is deeply rooted in the shared disease. I don’t have to go into great detail why I don’t want to do this or that. She is also someone that I am trying to help. She is deep into depression and I would like to see her get a grip on it. I want her to see the light at the end of the tunnel and I want her to start each and every day with hope and dreams in her heart. I want to see her aspire to something more than just her disease. At this point in her life, she wallows in it.
A great friend I’m not. I have a low tolerance for chit chat. I guess that’s why I blog. I can at least get the stuff in me out there for people to see and comment on.
If I am anything, I am very interested in telling people about this disease, and sharing with other MSers my take on it. I want to let others know that you can live with this as well if not better than other people regardless if they have MS or not. I’ve moved forward and every day is a challenge. If I can manage to get through each and every day in 5 second increments, then others can as well.
What I do well is love. I may have a low tolerance for inane things or conversations, but I love the people in my life. All of them, even the ones I call acquaintances. I have a great need and desire to reach out to them in the ways that count, ways that have impact on their lives and on mine.
I cherish each and every person I know and the ones I’ve yet to meet. I value the lessons I’ve learned from those in my past and they are not forgotten. They will always have a place in my heart.
To all of you I say, I would like to wish you a wonderful New Year and I am ever so grateful that you are a part of my life. I appreciate the fact that you hang in here with me and read all my words. You are my sounding board and I know that you are listening to me otherwise why would you subscribe?
Please feel free to comment on this article or on any of the previous articles. The cutoff date for my E-Book is December 31, 2012. Don’t worry, the blog will live on. I just need to have a beginning and end to my first book. Others will follow. I can’t wait to share the book with you.
If you want to be included in the E-Book, get your comments in and indicate that you are willing to have your excerpt published. I will not be using any names and I will not be sharing your email addresses.
Hello you lovely people out there! Many of you have asked me about my tree and I have to admit that I did not put one up. Today is Christmas Eve. Who knows, maybe one will be put up today but I doubt it.
Why? It’s a very complicated story too long for this web site. In fact, it would take a book to explain it all. In short, over the years I developed a distaste for the Christmas hoopla. When my children were very little, I did do Christmas for them and I enjoyed it very much. They are grown now and far away. They can’t afford to come to me and I can’t go to them because at the present time, I would not do well traveling. Yet that still doesn’t explain my lack of enthusiasm for this holiday. Grant you, that’s part of it, my children and my MS, but it’s not all of it.
You’ve probably heard some people say that Christmas is all year round? Many of them say that as an excuse to not put up decorations. I say that because I mean it. I honestly believe that Christmas is a season for shoppers and merchants alike. This includes me in part, because I do buy gifts for my children and my husband. It’s a good time for bargains and an opportune time to get my husband to accept the gift of clothing and such, things he otherwise does not allow himself.
Christmas is and should be every day of the year and no, you don’t have to purchase something in order to celebrate it. The gift of giving is not material, but is in the actions we perform each day towards and for each other. Christmas is the gift of love. It is the quality time we set aside for each other to do nothing other than to be with each other.
We all have a gift each and every day of the year. We have the gift of the people in our lives who love us. All of us can provide this same gift back to everyone in our lives. I believe that love is the best gift of all and I’m certain that I’m not alone is this.
There are some who feel as I do, in fact many if not most, but they also believe in Christmas. I don’t know. I guess that I gift the people who are far away and that I can’t do much to show them how much I love them now that they are grown up.
I enjoy the season just like everyone else, but I don’t feel compelled to do as everyone else. Many years I do. I do put up a Christmas tree and all the trimmings but it’s mostly because I think that Christmas trees are so lovely all lit up. It is also a good time to invite people over for dinner and companionship.
This year, I have not put up a tree. It doesn’t mean that I’m not celebrating the season. I am, but in my own way.
I am spending this day, Christmas Eve, completing a song I’ve written for some special people in my life as a thank you Christmas Carol. That is ultimately how I feel about Christmas. I feel grateful for the people in my life. This includes all of you.
So to all, I wish you a Merry Christmas. I thank you from the bottom of my heart for all of your support and love. I give to you the result of all this love, the person you have made me.
Merry Christmas and have a beautiful New Year!
Guess what? I am turning this blog into an E-Book. The cutoff date is December 31, 2012. If you would like to see your comments in a book, please hurry and put them in!!! I can’t promise that all of yours will be in the book, but chances are they will be.
Those of you who have already submitted a comment need to contact me and sign a release. Any new comments must sign a release as well. Please contact me at firstname.lastname@example.org
Once again. Happy Holidays.
I wish you a happy holiday season, but I don’t care for Christmas much. I prefer New Years. I believe that many of us who have been around the block more than several times, probably feel as I do. Christmas is very stressful.
Take the stress of Christmas shopping then add Multiple Sclerosis to it and you are bound to find me in a heap in the corner of my living room. At least long ago you would. Over the years, I’ve learned to protect myself from this stress by removing myself from the “Christmas” crowd and sticking to the home front. Don’t get me wrong. I am not a Mrs. Scrooge, in fact just the opposite. I am a generous gift giver. I just don’t make it so that Christmas is the only time I do it. I give all year round.
Surprisingly, I have found that many people don’t gift give until Christmas. That makes little sense to me. To each their own and I’m not here to criticize. I am just stating that Christmas can be counterproductive to a person with Multiple Sclerosis.
I am urging you to take care, take a lot of breaks and if you feel you need to end your shopping day, do so immediately. If you are feeling this way when you take a rest, it is probably already too late to fend off the fatigue that will set in. Try and sense where your breaking point is, recognize it, and then go home before it completely takes over.
Once again, MERRY CHRISTMAS AND HAPPY NEW YEAR TO EACH AND EVERY ONE OF YOU. I am looking forward to the New Year with you. We will travel a path that is our own and happily do so. We will be here to help each other out when we fall, and to bask in delight when we don’t.
I like to think of us all as a family here.
Merry Merry Christmas wishes I send to you and in the New Year. We will look forward to it knowing that we have each other as a family.
Your Magdalena O.
I went to a party last night with my husband. It was the annual corporate party at his work. It is held each year at different locations that are high end and stuffy. I don’t do stuffy too well. LOL.
Picture a free spirited person (me) with a bunch of quiet and reserved people. Mathematicians. I didn’t feel like going and I almost begged off. I do try and attend at least one event that the corporate bosses throw, and I had not been to one this year. I felt that I should go to the party, so I went.
Here is what’s difficult about events such as this. It happens at night, the absolute worst time of day for a person with Multiple Sclerosis. For me, my day starts to end at about 3-4 pm. I don’t voluntarily go out after this time. There is too much fatigue.
Fatigue? It’s different for each one of us as far as the details of it all. What is common, is that we all feel it to different degrees. The trigger for each one of us may be different as well although what is common is that the onset of it appears to happen later on in the day. When we are having a relapse, it is never ending, at least for me.
So there I am at a party with mathematicians whose tongues have loosened due to cocktail hour and those lovely little appetizers on the trays. People came up to me who apparently knew me. I smiled and pretended that I recognized them. There was something familiar about them but the memory escapes me. For the most part, they are men and not a one of them has movie star looks. Now mind you, I’m not making fun of the way they look. I’m only stating that the group has an industrious and intelligent look about them which borders on being dweebs.
Did I just say that? Well it’s the truth, at least in my opinion. The fun thing about mathematicians is that they know it and they willingly laugh at themselves. These are happy people. They have found a job doing what they do best. They get paid to play with their numbers. Not many of us can feel as they do. I was once told that the definition of happiness is to find work at what you love to do and get paid for it.
I lasted till after dinner. I could not sit still. The conversations around me was very little interest to me but only because I was not feeling well. It was so loud in the room. Why is it that restaurants, even high-end ones are so loud? What happens is that after a short period, I lose my ability to concentrate and it’s as though my brain short circuits from so much input. I can’t separate one conversation from another. It truly is unnerving and aggravating. I literally can’t understand what is being said to me.
This is why I don’t go out socially very much. I have a low tolerance for crowds especially crowds who have been drinking.
I feel good about the whole thing though. I wanted to represent my husband at work. I did. I did myself up with makeup, hair and nails. The day before, I went shopping for something to wear. The event that I dreaded did me some good.
You see, if you do something for someone else that you love, inevitably you are doing something good for yourself. At least try. If you don’t make it to the very end, you still did it.
I gave myself a pat on the back and the smile on my husband’s face made it all worthwhile.
I am going to do something highly unusual for me. I am going to promote a product. It is a product I own and I promise you, you can earn an income with this.
I think that there is only 35 copies left.
Why am I doing this? My primary reason is this. I know that you are living, more than likely, living on Disability. I also know that Disability checks do not provide you with an income that you would like to have? There is a problem though. If you work, then you lose disability payments, or so you think. However, you don’t lose your disability unless you make a certain percentage of what they will allow. What happens is that payment adjustments are made. The more you make, the less you get but ultimately, you still make the same. So you’re not losing Disability, you are deducting what you made from what they will allow. It also depends on whether you pull profits or not. When you pull your profits, then it is income. If you allow it to stay and use it to make more money, well then you haven’t increased your income. You are still using the funds to make more money. Does that make sense?
You are my primary concern and that is why I am doing this. The second reason is that I know Russ Horn from a previous system that I purchased from him. I have been a member of his group for over a year now and I can promise you, that if you follow his system step by step, you WILL make money. Read the review below that I found on the internet. If you like what you see and go to the website, you may balk at the price. I am here to tell you that you MUST spend money to make money. No question about it. Think of yourself opening a store. Well you have to put something in that store. In order to place merchandise in there, you need to purchase it. It is precisely the same here.
You don’t have to have experience in Forex to benefit from it. All you need is Russ Horn’s guidance and he is with you every step of the way. You need to check it out for yourself. If you want to do this before reading the review I’ve posted below, then click here.
Russ Horn’s Rapid Results Method
What Exactly is Rapid Results Method? The Rapid Results Method Members Area – Where You Can Download The Software & Full Course Rapid Results Method is the latest & greatest product by the multi million dollar ‘Russ Horn’ Team of product creators and Forex Traders. The Rapid Results Method product shows you step by step exactly how Russ Horn makes over $100,000 every month using this amazing Forex trading strategy. Forex Trading is a great way to work from home and make huge sums of money online, sometimes only trading a few minutes or hours each day, but there’s just one problem… So many people try and fail, losing their initial investment and often there second and third investments and then giving up. Some actually believing that this Trillion Dollar Market is all some sort of internet scam because they cannot succeed in it! Of course this is ludicrous idea but it is understandable when frustration and financial loss take their toll.. Can Forex Trading Really Be Successful & Does the Rapid Results Method Really Work? I’ve got a confession to make. Even I THOUGHT at one point, that direct Forex Trading was a mug’s game. I mean, I was trading on and off for years and at best broke even period and often took losses.
Quite frankly, Russ has made me and every other wanna-be Forex trader look like a dumbass…. Why? Because Forex Trading is NOT a mug’s game, it is NOT only for the massive financial institutions and it can be profitable, extremely profitable to the wee man wanting to work from home and have a substantial income! This incredibly simple (yet potentially revolutionary) system that is the Rapid Results Method does work – and it does more than just work, it’s amazing. Step by Step – Here’s Exactly What Rapid Results Method Gives You… “Basically, you’re getting a physical product containing – 6 DVDs – A manual – 6 Cheat sheets – The Dynamic Positioning Indicator (DPI) – The Signal Automation Recognition Alert (S.A.R.A) – Private member’s only area – Support with Live Chat, Skype, Email, Telephone. This is a how to, for implementation of a step-by-step winning Forex strategy that consistently allows you to minimize your losses on the few losing trades you may have, which are not many and maximize the profits on your numerous winning trades.” Click Here to Go To The Official Rapid Results Method Website.
Here’s exactly how the system works: First of all, no prior Forex Trading experience is required – at all. I know, I was as shocked as you probably are. But seriously, you set up a trading account and can quickly start trading successfully with what feels like a lifetimes worth of knowledge and experience. The reason I can say this confidently is that after evaluating the product myself, I actually had to through out a lot of what I already thought I knew and replace it with the invaluable information and strategies offered by this program.
Before I was happy to make a few pips and to lose a few pip, believing that as long as I was not taking a loss then somehow I was succeeding. That may sound strange but after years of losing and trying strategy after strategy only to have my balance wiped again and again, I started to believe that now that I am breaking even, then I am on the right track. Of course to an extent I was but the Rapid Result Method has shown me that I would have never really moved beyond this point. My way of trading, the things I was looking for to enter or leave a trade were simply so tight, had to be so exact before I acted, I was losing all my profit potential. The Rapid Results Method expands not only my trade opportunities but also greatly expands my profit potential whilst within a trade! Note: This method does do much more than that but I’m unfortunately not allowed to reveal it, this is for several reasons. Obviously at the time of writing (during Rapid Results Method’s launch period) and secondly the scale of this product is beyond the scope of this review and my trading knowledge. I am not Russ Horn and I cannot even come close to properly explaining the depths and nuances of this method the way he can… … but believe me when I say that after putting into practice Russ Horn’s Rapid Results Method and started thinking the new way he coaches you to think, the results are almost immediate. If it sounds like the simplest thing in the world, well it really is. Think the way you need to think, do what you need to do (as this method shows you) Then you produce it again and again, trade after trade. Rapid Results Method is focused on doing the same simple but advanced strategy over and over. Why? Because it works and it makes money, a lot of money.
The Bad Points
Obviously, Rapid Results Method’s not perfect. Here’s what caught my attention: ?Although no previous Forex Trading Experience is required, there is quite a lot to take in and for those who have absolutely never done any Forex trading at all, some of the terminology may lose them and as such although they will learn the systems and methods, of this I have no doubt at all, it will take them a little longer than people with at least some trading experience. ?You will need money to start. This is not a free system, you will need to spend money to make money so to speak. However, in my tests of the trading method I found that the cost of Rapid Results Method was already covered after just a few winning trades.
The Good Points:
Most importantly: It works and it doesn’t matter what your experience level is, if you implement the system you WILL make money. Maybe not $100,000 per month but a full time income is certainly and easily achievable. ?You don’t need anything else. While I recommend you pick up all the bonus material and packages Russ offers to help your overall understanding of Forex Trading you certainly don’t need to. Everything you need to trade successfully and make money from scratch is included. ?Anyone can use it. It doesn’t matter if you’re completely new to Forex trading or an expert. Obviously the more experience you previously had then the faster you will take in what is being shown but everyone who wants to trade the Forex will succeed following Russ’s Methods. Do what he does everyday as a professional Forex trader himself and replicate the results he gets everyday also. ?A completely different system than anything you’ve ever seen. While this is great for relative newbies, even if you’re an expert it’s worth getting. Rapid Results Method and it’s way of making trading the Forex work is amazing, I personally learned so much and I’ve been at this game for a few years now. If you’re already making money online trading then this can be yet another winning system for you, seriously, I guarantee you won’t have seen anything like this before…
And so we come to the end of my Rapid Results Method by Russ Horn review. Overall, this is one of, if not thee, most impressive and complete Forex trading strategy products I’ve seen in a long time! When you look past the flashy ‘Russ this and Russ that’ sales page, when you click on one of the links provided, what you essentially have is an amazing, unique, simple yet powerfully advanced systems that’s a sure win for any trader to make money online Forex Trading, no matter what you’re experience is. Heck, I’m going use what this method has taught me and get to more trading (successfully) the second I finish this Rapid Results Method review. Stewart,
Click Here Go to The Rapid Results Method Official Website.
Who is Russ Horn,
Russ Horn is recognized in the financial world as one of the leading men within his field, the Forex market! He has been for over 11 years and still is an active Forex trader, has written many books on the Forex market and Forex strategies. Absolutely no-one would argue with the fact that he has proven himself to be a very successful and profitable trader and has an unrivaled history of passing his knowledge to his students.
Every Forex System he has released has been hugely successful, first was the Forex Rebellion, then in 2011 his sold out Forex Master Method, which is the system he was using himself to be a successful Forex trader. Now after 17 months of development he is finally ready to release Russ Horn’s Rapid Results Method. The physical product is already causing a huge amount of interest and is expected to sell out fast.
ClickBank is the retailer of this product. CLICKBANK® is a registered trademark of Click Sales, Inc., a Delaware corporation located at 917 S. Lusk Street, Suite 200, Boise Idaho, 83706, USA and used by permission. ClickBank’s role as retailer does not constitute an endorsement, approval or review of this product or any claim, statement or opinion used in promotion of this product.
Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.
Well hello everyone. I know that I’ve not been very good over the past six months about posting in here, but I promise this will change. I think that you all get it. With MS one has to take the time to heal when one is not feeling well. It took ahold of me and tried to squash me into a helpless pulp but I won. I’m here with you and that’s where I want to be.
The last time I posted here was November 13, 2012 and now it’s the 24th. That’s not so bad, but not good enough. Allow me to tell you what has been happening inclusive of November until this past week.
Has anyone here suffered from extremely low red blood cells? I’m talking about anemia? If you have, please let me know in the comments. Does anyone know if this is an MS symptom? I don’t. Why don’t I find out for you. I will post a link here if I find something, Why don’t I check now? Okay, hang in there. I’ll be right back.
tick tock, tick tock, tick tock……………………………………..
Both vitamin B-12 and iron play a role in neurological function and the development of myelin.
Look at the above!!! I honestly didn’t know this. If you go to the link, on the side panel are other links that will lend well to research. I plan on going back there to do some research. Vitamin B12 plays a role in the onset of MS. Would you believe this? It’s no wonder my hematologist has me on B12 shots as well. Oh, I’m getting ahead of myself. But I have to tell you this. I love love love the internet. You can find anything here.
A few years ago, I was extremely short of breath. I craved eating crunchy foods, in particular things like almonds. I was freezing cold even though it wasn’t cold outside or inside. I was even more tired than ever and I just couldn’t catch my breath unless I was sitting perfectly still. I lived with this for about a month or so never realizing that perhaps there was a problem. I thought it was just MS.
I finally mentioned all of this to my family doctor and he decided to do some blood work. It came back with hemoglobin of 5 and the normal for hemoglobin is 12-13 depending on where you have your lab work done. He sent me to an oncologist/hematologist specialist. She was concerned about my levels and started me on a oral medication, of iron ferrous. It took nearly a year to get back to normal and I also had B12 shots at that time as well.
Around August of this year I became increasingly tired. Then as days rolled by, I experienced shortness of breath again. It’s an ugly type of shortness of breath. It’s where you can’t even take a deep breath in what is commonly called a cleansing breath. You want it so badly but you can’t do it. You’re starving for air. You hunger for it. Walking across the kitchen floor or just a few steps was enough to get that sensation. If I sat still and didn’t move, I could breathe, but the minute I swung my legs off the chair or bed it would begin. Sometimes I couldn’t finish a sentence or the sentence would end in a whisper.
Duh……I started to put 2 and 2 together and realized I’m probably severely anemic again. Did I tell my Doctor? No not yet.
I went to the Wellness Center here. I was a member of the club. I signed up with my coach and off I went to have my personal training. I do this twice a week. She was called away and I decided to do the treadmill. There were things I forgot to do or wasn’t instructed on how to do it. I didn’t realize it at the time though. You see, I was hoping that if I worked out, maybe I could have one of those deep breaths. To make a long story short, I fell off the treadmill and injured my back, leg, toes and neck. Ambulance came and hauled me away to the emergency room. While in the ambulance I kept saying I think I have whiplash and sure enough, I had whiplash. I’m still hurting from it.
So as you can see, I have been busy with a return of symptoms of MS unusually severe this time along with other maladies, falls, and ambulance rides each time. It’s not been a lot of fun.
During times like thsese, I have a tendency to hide out. I do very little but mostly lay around and try to recover. I began to realize that I was in a state of depression as well. All the more reason to hide. But you see, hiding; at least for me, is not a good thing. You just wallow in yourself and then you become depressed. The more depressed I became, the more I wallowed in my disease. A pity party began and lasted for quite some time. The very thing that I hate about some not all, blog sites on the internet.
While I’m at this, I should explain my last sentence, the one I said about hating some blog sites. I have visited many sites to see what is going on. For the most part, I would have to say about 90% of the blog sites, are heavily involved with throwing those “pity parties. This is not to my liking. As a member of some of those sites, it is difficult for me to hold my tongue and not start attacking some of the posters not in a mean way but in a kind way. Actually, what I want to do is tell them to stop all this bull s–t and get off their asses and get on with living. But this isn’t fair. They are not me. We are who we are and I just happen to be very strong of mind, not of body.
My defenses were down this time and I too joined the parties for awhile. I must admit that to you. We can’t always be strong. It’s a tough lesson for me to learn. I don’t know why my defenses were down this time, but there you have it. You see, this go-around, my Doctor decided that I needed transfusions in order for her to speed up the replacement of my iron. Every week I went in for a 5-hour ordeal of transfusions in the oncology center. It should have taken only three hours, but I became ill with the transfusions and had to take a bag of Benadryl first before the replacement started.
As time went by, I got bored with the parties and found myself again, but I still wasn’t ready to come out of hiding. Eventually I did and here I am again. A lot of things fell by the wayside during this time including this blog. Then I realized that I shouldn’t beat up on myself for having taken some time off from the real world. That it is okay to lie low and heal. I’m not completely back but I’m working on it.
So the reason for this particular blog today was to make you all aware that you should have your iron and B12 monitored at least every three months if not every month. You all don’t need any more problems than you already have. I’m here for you should you ever need me.
Well hello my dear friends. As you can guess, I am still at war with the hidden part of me. It is pushing and shoving at me. I push right back. I am sharing with you some of my deepest thoughts when I’m up until the wee hours of the morning. I wrote this one of those nights. I don’t feel that way any longer.
Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.
The notes just pour out of my heart and into my fingers. My fingers tell me what’s in my heart. For instance, tonight, nothing I played came out happy. Everything came out in minor or dissonant chords that made a lot of sense to me. The longer I played, the harder the velocity until I was beating on the keys so hard that it felt like I was trying to push them out the bottom and into the hole with me. I realized then, it’s time to stop. A catharsis? Perhaps.
I’d forgotten how my fingers would traipse along the ivory keys telling me my own story, oftentimes unaware of the nature of my spirit until my fingers started their dance. There were times when I would sit facing the piano, start playing, and the music was so sad, that I would cry. Not tonight though. Tonight it was more of an extension of frustration. Frustration over the feeling that sometimes I can’t control the sensation of a wasted life.
I had such dreams. I reached for the stars and when I was just almost there, my fingers grazing the tip, my life changed dramatically. I became a mother. Motherhood was an absolute delight since I was but a child myself. So my dreams refocused and I looked at the world through my child’s eyes. He was a happy baby and because he was happy, I was as well. I became the mother my mother was not to me. That’s another story. My dreams were on the back burner along with the stew. In fact, they stewed there so long that they sort of fizzled away into blackened and charred remnants of a life that I gave up.
I am not resentful of my decisions. They were the right ones at the time. The resentment and complete and utter despair came when my children were no longer with me. I stood there with empty arms and no clear path to take. I tried to fill those arms for many years but I was stuck between a rock and a controlling woman, and to this day; I can’t forgive her. I don’t want to. I know who she really is despite the changed persona she puts out there. She slips in and out of people’s lives. She slips in to assert her position and when that’s accomplished and the recipient with blinded eyes acquieses to her manipulations. She slips out again. She is like water in your hands that no matter how you try to keep it from running out, it eventually does and you are left with empty hands and empty promises.
I digress and I will regret this posting tomorrow. Right now at 1:30 a.m., I just don’t care. I’m tired, and I’m sick and tired of being sick and tired. I fluff over how I’m feeling to people around me because I can’t stand listening to others go on and on about their aches and pains. I therefore choose not to divulge the true status of how I’m feeling from day to day. What’s the point? It never changes and that brings me back to my frustration. But it seeps out through my fingers when I sit in front of my therapist, my piano.
I’m vulnerable tonight and my fences are down. All the hurt and pain, past, present and future, psychological and physical looms in front of me and it’s doing it’s best to get in my way. For the next few minutes, I will let it keep me company. I’ll feel better tomorrow. It’s the weekend and I’ll have a real person to talk to instead of my dogs. Perhaps then, for a transitory moment, I won’t feel the frustration of lost dreams, and of the insignificance of my life.
Ugh. I really need to go to bed. I’m just ridiculously morbid tonight. I’m pushing aside these thoughts. Onwards and upwards.
Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest.
Here is how an average day goes by for me.
I’m usually awake before anyone else is in the house (2 dogs and one husband) primarily because I haven’t been to bed, or because I’ve been there and I’m awake already.
I look for my glasses, usually on my head, and head for coffee after I deal with the bathroom.
While the coffee is brewing, or if it’s being made on the K-cup machine, I let out the dogs and holler up at my spouse that I’ve let the dogs out. I can’t stand dog food, so he feeds them.
My walker and I head into my office along with the coffee, although most mornings, it’s my spouse who makes the coffee because I forget to. He hands me 11 or 12 pills that I take most of which are relaxants for my muscles. Of course then I sit at the desk nodding off after a few minutes and abruptly waking up. Drives me crazy.
You already know what I do next between my little cat naps. I play my games. I do this so that my brain wakes up and it also tells me how I’m doing cognitively, since I’m strongly affected in this way. If I do poorly, I know I need to keep my thinking hat off to the side and just work on light things. For me that is creative things.
My spouse goes off to work and I’m alone with the dogs. If they are inside, I send them back out so that I can have some peace and quiet as I get ready for the day. I don’t think much about anything as I lay in my whirlpool tub. I just have to concentrate on taking things five minutes at a time. If I think further ahead, I get confused.
Getting dressed is always a major hassle. I have to think about what goes on first and so on. I often forget to put on something vital, like my panties or a bra. Trying to lift my leg to get pants on is a trick since I can barely lift my legs. Getting dressed takes a long time.
I let the dogs in and we are all set for the day. I grab another cup of coffee and try not to spill half of it on the floor on the way to my desk. Once there, I check my calendar and see if I need to be anywhere. If I do, I set the alarm clock on my desk. Then I promptly forget about it.
Now decisions must be made. I have stickies all over the place and notes in notebook that I need to read through in order to wrap my mind around what needs doing. I try to get my phone calls done and anything else that is important like arrange for a test or what have you.
It’s very quiet in the house because that’s the only way I can think. The computers go on, I have three of them and so do the keyboards, I have two of those. I then try to figure out what has priority for the day if any. If nothing has a priority then I split my day between everything that I do. What might that be? I day trade, I compose music and have session work, I compose my own music, and now I have a business in the works with the internet so I have to study for my next coaching lesson.
I have not let go of my dreams or my ambition. I want to make lots of money so that I can pursue those dreams. I also do the things I do because I feel it’s important for my self worth. I need to feel like a vital and important person on my little patch of land.
I struggle through my days half asleep because of all the pills I take. The mornings are fairly quiet and the phone seldom rings. The afternoons get pretty busy but I try and curtail all appointments to end before 4:00 p.m. because then the fatigue sets in.
If I decide to work on music then the day and night is lost to it. Nothing else gets done. No food nor anything else. I fade away. So I do try and keep my musical work till late at night when everyone else is asleep.
If I pass something on my way to the bathroom for the 100th time, I try to take care of it.
If I can’t then it has to just sit there till my spouse gets home. My days are plagued by my attempts to get something done only to realize that I can’t do it, BUT I TRY FIRST.
Admittedly my afternoons are a fiasco. It’s as though I can’t make 1 + 1 = 2. My logic defeats me and I start on something, get distracted and start on something else and so on. By the end of the day, there are multiple piles of things I had been working on that are not finished. I take out my pad and make notes for each pile although those notes won’t make sense to me in the morning.
Sometimes my doorbell will ring. I try to get there quickly but people don’t realize that I walk very slow. Most of the time I watch whoever was there walking away. I’m disappointed because I want the company and I’ve not spoken a word all day half the time.
Besides the work where I try to generate an income unsuccessfully, I mostly write or compose, two areas where I’m completely at ease.
I drink a lot during the day but I normally don’t eat because I can’t reach anything. You would think I would be a skinny girl, but I’m not. Too many drugs prevent that and half the time I’m swollen from them.
The highlight of my day is when I have a Doctor appointment. Yipee, I get to go out. I have a car which frightens me. What if I fall asleep? But I like having it there to remind me of freedom, and I do take it out once in a while to run various small errands all within a 5 mile radius.
I am in pain from the minute I wake up to the minute I wake up again. I can’t get away from it and I can’t run away from my body. The pain sometimes paralyzes me into inactivity where all I can do is concentrate on making the pain less painful. I succumb to drugs if I have to.
The day ends with my spouse coming home to a dinner or bringing dinner home. It all depends on how I’m feeling. He turns on the TV and I run away to my office or my bedroom. Sometimes I watch TV, but not for long. I much prefer movies. There are no loud commercials.
I am but a fraction of the person I once was. I wear a mask of smiles and cheerfulness. When in conversation with other people it inevitably turns to their turmoil’s, problems etc… I try to encourage them the best I can. I write this blog for the same reason.
Now here is my point. That fraction of a person that I am, is still a person. She has needs, desires, ambition, sexuality, vanity, and a need to be loved not only through kind acts but through desirous acts. People don’t understand it. They treat us like we are disabled, we are; but we are not. Our bodies have betrayed us. My mind plays hide and seek with me. NOTHING absolutely nothing can be done in the old way. EVERYTHING is a struggle. EMOTIONS are more acute because you see things you didn’t see before. You see who cares and who don’t.
People want you to be a good patient and pat you on the head as they walk by. I’m not a dog although I can be a bitch. They don’t expect you to think or to verbalize what is on your mind. It doesn’t matter to them anymore. They have a mindset of you as a patient and take every thing you say with a grain of salt.
Yes, life is shitty. Yes, life has changed. But now I’m inside out, or outside in. I see the world from a different perspective. I see more than they see. I understand more than they do even if it is a mixed up jumble in my head. I truly understand how they see me and I DON’T LIKE IT ONE BIT.
I have recently dumped a lot of funds into a group of people who may be able to help me get a project off the ground. I believe they will because I believe they believe in me and my dreams. However, they don’t witness being with me, and I sometimes wonder if they would believe in me as they do now if they did. But I brush that aside because to think that would be defeatist and I’m not a defeatist.
I truly believe that you MUST try and do the things you believed in before you became ill. Follow those dreams. Go get it. YOU CAN, but only if you try. Think of “trying” as a muscle that needs to be worked. The more you work on it, the stronger it gets.
Don’t sweat the little things you can’t do nor the big ones. If something doesn’t work for you any more, then leave it right where it is so that you can tell someone to make it work for you. After all, you are alone during the day and you need to be able to do for yourself.
I am a compassionate and loving person. I carry those things with me. I spread them around when I go out. I am well liked and loved by those who know me. They are amazed at what I have managed to do even though my blouse is on inside out. I even surprise myself.
I’m going to say it yet again. YOU ARE ENABLED BY YOUR DISABILITY TO DO THE THINGS YOU DID BEFORE PERHAPS EVEN BETTER.
The only person you hurt when you give in to it is yourself. Sometimes it can’t be helped, I know this first hand.
Do yourselves a favor. Look in the mirror. Study yourself. See the child? See the adult? See the good and the bad? FALL IN LOVE WITH YOU. You are worth it.
Welcome to MSLIFE If you are new to this blog, please read from the bottom up so that it will make sense to you. This is the latest blog, not the earliest. A word of caution: The topics discussed in this blog are adult topics for the most part. This particular subject is not for young eyes Read the rest of this entry »
Depressed here. For all this talk of rainbows, the glass half full and silver linings; I’ve looked everywhere today and haven’t found one. So it goes, the ups and downs of having a demyelinating disease that eats you up then spits out the remnants..
What gets to me is that I have a supportive husband and friends and yet can’t talk to any one of them. Why? Because I know they have heard it all before and I’m being polite in not sharing with them. If I should tell them there is no reason for it, they look at me like I’ve lost my mind. I get these nibbles of happiness and then they slip away as fast as they can. I have to admit that I don’t get it.
I think that loneliness plays a big part in all this. The only people who can truly understand what you are going through are others who are going through the medical nightmare that we go through, not just MS.
There is another factor that plays a role in our ups and downs. For me it is holidays. I pretend to not care about them and for the most part I don’t. What I do care about the holidays is that they don’t exist in our houe. By this I mean that one day is like another. My husband is a wonderful caregiver but he worries so much about me that I am literally gasping for air with wanting to do something normal and FUN. What happened to FUN?!!!
Caregivers need to understand that we have a medical condition/disease. Most of us don’t have one giant lesion in our brains that makes us incapable of doing many of the things we used to do. I don’t know about all of you, but I need to get out once in a while to have some fun and be around other people other than my spouse. It’s like the song, “People Who Need People”.
If you listen carefully to the words, they are beautiful.
Caregivers and MSers who just stick to their homes are depriving themselves of the wonders of other people. Sure you have to take the good with the bad, but the good far outweighs the bad and it’s wonderful. It does so much good for the soul. Even if you’re in a wheelchair, scooter or using a walker or cane, at least you are out there. Those of us with incontinence, put on a diaper. So what! Come on! Live!
What is the point of holidays for us if we don’t have holidays within our own homes. I was like this, this past Christmas. No one was coming and we could not go anywhere due to both of us being ill. But my spouse put up the tree himself. Then I got into it a bit and did some decorating myself, but at the end of it all, no one came and so I just gave up on holidays myself.
I realized how stupid I was being because after a while, I realized that oftentimes people didn’t come out to us for one reason or another, but we celebrated anyway. Our families are widespread and live all over the world. It’s impossible to get us together all at one time. So what gives here? Why the depression?
I think it is mainly pain. I’ve undergone several procedures over the past 9 months and I’ve been in constant pain. The drugs I take for the pain makes me unable to drive and/or gives me a narcoleptic syndrome where I fall asleep at the drop of a dime. My friends think it’s funny because I will fall asleep for a few minutes right in the middle of a conversation and then when I wake up I pick up right where I left off.
So to be completely honest with you, I don’t feel like analyzing myself right now. The next couple of blogs, I am going to introduce you to a couple of people who also have disabilities and they’re “Now What?” lives.
If you’re looking for me, just look up when you come inside. I will be climbing the walls somewhere in the house.
Let’s see. Where did I leave off.
All of this started almost 9 months ago. I am still in limbo as far as a definitive diagnosis is concerned, but at this point, I hardly care.
WOULDN’T IT BE LOVELY TO HAVE ONE DAY, JUST ONE DAY; WITHOUT ANY PAIN WHATSOEVER? To be able to dance and run, to have strength, to have endurance, to be able to have a true belly laugh without fear of incontinence, to clean the house from top to bottom instead of hiring it out, to play ball with the dogs, to have sex with abandon or for that matter to have a libido?
I am a lady who sits before you with a multitude of problems. I have been turned away by two neurologists who tell me I’m a too complicated case and that I need to see a specialist in MS. I have one!!! He wants me to have a local one who can deal with the day-to-day problems of meds etc…
I’ve had many surgeries. I almost died last year. Now I have the added fear of cancer just around the corner as a strong possibility. Where is the silver lining you might wonder. How is she going to turn this around this time? Right?
Yes, I still have dreams and ambition but they seem insurmountable at times, in fact; most of the time. My goals in life are not solely for myself but to help others. I am working hard on finding an alternative method of income for all of us. I write music that has made people cry and laugh. I teach. The price I charge is a hug. I’m an artist. I paint everything in sight including all my walking aids. I just figure if I have to look down at a walker, it better have a picture on it that makes me smile. I am compassionate and passionate. I have emotional strengths. I listen well, therefore I am good at helping others. I am not judgemental of people, only of what they do or don’t do. I am a gifted and humane person and I’m patting myself on the back right now because there is no one else to do so, yet I know that I am talked about all over the Princeton area with admiration.
What I am most of all is lonely. The second thing I am is angry. The third thing I am is resolute. All this leads to my becoming a fighter and a doer.
Where is the silver lining? I am here! You are here! I write the words, you read them. I can’t stand the words ‘YOU CAN’T.” I CAN. Do you hear me out there? I CAN, and I WILL.
Each and every day is a challenge. We don’t know what we will wake up as. Are we crippled today? Are we so spastic that we can barely move? Are we cognitive today? Can we speak clearly and not slur our words? Can we remember people’s names? Can we retain knowledge today? The list goes on and on and you know what my answer is to all of this? Yes, yes, yes, yes.
Yes, we all have our hardships. But think about it. It’s a new day! Every day is brand spanking new! Now you can make the most of it or you can hide beneath the covers and let it slip by. I’m asking you to try not to do that. Beautiful things can happen whether you are disabled or not as long as you are out there offering yourself to the world. Who cares if someone likes you or not? Who cares if someone looks at you with pity because you are using a wheelchairs, walker, cane, etc…? So what if they stare? Stare back and smile.
The other day when I was feeling like I was the most stupid person in the world, I received a phone call from someone I’ve never met before. As the conversation went along, suddenly I felt myself being lifted and gently placed on a pedestal. I couldn’t stand on it, but I could sit on it and swing my legs. By being placed on that pedestal and being only 4’10 1/2″ tall, I saw the world from different perspective. I was enlightened and my burdens grew small. I was on top of the world because one person, just one person decided that I was worth a pedestal to sit or stand on. Had I been hiding under the covers, I would have never met them. All of a sudden I had another fighter in my corner and strangely enough, he too has his own disabilities. So here you have two people with their burdens in a backpack on their backs, laying aside those backpacks, and suddenly feeling 10′ high.
I continue to go through everything I’ve been going through and now I have another added scare, but you know what? It doesn’t matter. When “like” meets “like”, the whole world makes sense. You have the same possibilities, but you have to be out there fighting. Fight for you and fight for the rest of us. We can get through each day, five minutes at a time. Don’t look at the whole day ahead of you, just look at those 5 minutes. Make the most of them.
I don’t feel so lonely anymore. I don’t have to cry and look into a mirror, touch my face with the tears streaming down, and comfort me with my own hands upon the mirror because there is no one else to do it. I consider every day a day of possibilities.
My silver lining? IT IS YOU!!!
Here we go with Part 2.
First of all, before I continue, did you sleep well last night? I hope you did. I hope you had lovely dreams of the person you were and the person you still are.
Our bodies have changed much more dramatically than others. But realize this, their bodies are changing as well. Whether its biological or emotional. We’re all in the same big boat but some of us are off in little boats paddling around in circles sometimes for fun and sometimes because we are lost trying to find our way home.
But we are home! Home is inside us. Home is what we make it. If you want a sad defeatist home, you may have that. If you want an uplifting home where your house is picked up by a tornado and plopped down in a different location, you may have that too.
Home, Church, God, lies within us. We make it what it is. So I hope you had sweet dreams in your homes.
Back to the story.
After I had the stone removed, I was left with a catheter still in me to keep things open and working. I was told it would be removed at the following office visit. I couldn’t wait to get that painful catheter out of me.
At the office visit, I was placed on a table and given a shot of some sort, I guess to ease the pain of the removal of the stent. There was a nurse present in the room holding paper towels. The Doctor eased the stent out and I felt a spasm in my bladder. I saw some blood on the sheet. It took just a few minutes to do this.
He said I should feel much better after this and to come back in two weeks. Then the nurse handed me the paper towels and told me I might need them to clean myself off. They both left. So there I sat, an MS patient on this very high table in pain trying to figure out how to get off of it without killing myself on the way down.
I did manage to get off the table but I had to turn over on all fours and ease my way off. The minute I stood up, I felt another strong and painful spasm and this time urine came flowing out all over the place. Hence, the reason for the paper towels I guess. I cleaned up the best I could, got dressed and walked out.
All the way home it felt like nothing had changed. When I got home I told my husband, “it doesn’t feel like the catheter is out.” I went online and checked to see what happens to people when they have a stent removal and their stories were similar to mine except they felt immediate relief.
The next day I crawled up the steps to the bathroom to take a shower and while crawling I felt something dangling between my legs. I stopped and looked and saw this strange plastic thing hanging there. I went up the rest of the steps and into the bathroom and looked again. I pulled on it. It was then I realized that it was the stent! He had not completely removed it! I was shocked. I decided it had to come out. So without benefit of anesthesia I gently pulled on it. It elongated and I realized it was plastic and had this strange curly end to it.
My hands were shaking but I pulled on it again until it came completely out! I had another bladder spasm and a mess to clean up. I knew it! I knew that stent was still in me. I was shaken and in pain but I cleaned up the bathroom and took my shower in tears. The other end of the stent had the same curly end to it. I showed it to my husband who couldn’t believe his eyes. I placed it in a baggy and put it in my purse. I have not felt myself since then.
I called the Doctor the following day and asked him about it. He fumbled over his words and told me he had removed the stent, then asked me to describe it. I did and I didn’t hear another word from him. Instead, the head of the Urology practice asked me to bring the stent in so they could examine it. I told him no. I went for a couple of follow up visits but never was allowed to see the Doctor who had removed the stent. I finally stopped going to that practice.
My MS kicked into high gear. I think it was all the stress and the continued pain I felt in my vagina.
Note: If there are any young readers in here, you must understand that this blog is about life with MS with all it’s ups and downs. Only truths are written here and sometimes strong and explicit words are used. If this offends you, please do not read this blog.
I complained about a pain in my vagina for months. Finally I went to see my gynecologist. He saw a small lesion or tear in there. He also took a pap test and prescribed a topical ointment because every time I peed it hurt.
I no longer had the pain of the stone but now it was all centered in my vagina. Months went by and I finally went back for a follow up with my gynecologist who demanded to see me. He said I had dysplasia cells (precancerous cells) in my pap smear and noticed that the little lesion had now turned into a sore about the size of a quarter. He decided to do a biopsy right then and there.
The biopsy came back with dysplasia again but he wondered how far down it went and if there wasn’t something else going on because I just wouldn’t heal. It was decided that I should see and oncologist in Philadelphia.
I went and she too did an immediate and more extensive biopsy and also referred me to another doctor in Philly. He took one look at me and sent me back to the oncologist suggesting a wide-excision biopsy to see how far down the dysplasia went.
This was four months ago. I underwent the surgical procedure and the Doctor came in and said that there was no cancer found, but that the biopsy showed Vin I or Vin II dysplasia. That’s just a grading system they use for these things. Because she didn’t seem too concerned over it, I didn’t worry about it and I thought that now everything had been done that could be done, I would begin to feel better. Wrong. I began to feel worse again. Every time I went to the bathroom I nearly cried in pain. I couldn’t sit, stand or walk without feeling pain. I was placed on a strong dose of Percocet, a pain killer. Between all the drugs I was taking for MS and now the Percocet, I was walking around like the living dead.
Once again I am drained of all energy so there will be a part 3.
I need to get off this chair and lay down because I just came home from the emergency room. I made a promise for part 2, and I will make a tentative promise for part 3 tomorrow.
Go and get some rest. I am with you always.