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.
HAPPY NEW YEAR TO ALL!!!
I noticed you cleaned up our place. Good job! So How has the first three, now four days of 2012 been?
Like I said before, I am now typing in the form of letters instead of Skype style because then I won’t feel like I’m talking to dead air.
My first few days have not been very interesting but they have been filled with yet another strange MS phenomena. Inexplicable and unexpected muscle cramps in every place you can imagine. It happens particularly when I am tired, and yet I’m always tired now because I can’t rest because of these. It’s a conundrum!
I’ve had maybe 6 hours of sleep in 3 days. I’m the walking dead.
[2:34:32 AM] Magdalena Obert: Strangely enough, I’m in pretty good spirits. It’s almost like being drunk. I’m afraid of my bed, so I stay up for as long as I can u till I collapse from the necessity of getting some sleep.
What happens is this, I will be asleep, then suddenly I’m awakened by a charlie horse. When I try to pull out of it, another one starts up. I write in agony. I know that if I can stand up, I could walk it off, but as I edge closer to the edge of the bed, it keeps happening. I cry out in pain, but David doesn’t hear me. He sleeps upstairs while I sleep wherever I drop off to sleep.
[2:38:29 AM] Magdalena Obert: We went out and bought a sleeper sofa in the hopes that I could at least sleep in a bed down here instead of the sofa or in my chair, but I don’t go near the bed because I’m afraid to sleep.
[2:39:14 AM] Magdalena Obert: 000000000000000000000000000000000000000000001
[2:39:34 AM] Magdalena Obert: oops, sorry.
[2:43:06 AM] Magdalena Obert: I tried to call the Doctor today, but they are off. Many places here in the States take the following day off if a holiday falls on a weekday, which New Year’s Day did. Instead I got a hold of his stand in and he told me there is something definitely off because it’s unusual to get one cramp after another. So I need blood work.
[2:44:59 AM] Magdalena Obert: Well all MS people are accustomed to getting spasms or cramps, but this is ridiculous. I tried opening a tube of toothpaste today and my fingers cramped up around the tube. I could not put the tube down. I actually had to hit my hand against the sink to loosen my fngers. That was it for me and when I decided to call my Doctor.
2:49:05 AM] Magdalena Obert: I take tons of muscle relaxants because many of my symptoms are Parkinson-likel but hey don’t seem to help. I’ve also been eating a lot of bananas thinking that I’m low in potassium, but that hasn’t helped either. Did you know that peaches and tomatoes are also riich in potassium? [4:52:03 AM] Magdalena Obert: oh noooo. I fell asleep! It’s been almost two hours. You see ____……you bore me!!!!
[4:55:22 AM] Magdalena Obert: Well so now it’s almost 5:00 a.m. and I started this letter at almost 3:00 a.m. You got me through another night. You have your uses. I may as well stay up now and finish some work. All I need is about 2 hours sleep at a time and I’m ready to go. Hey and no cramps! Aww gee thanks ____.
[5:01:46 AM] Magdalena Obert: I do plan on calling my Doc today and get the blood work done. Today is what? Oh Tuesday, so it’s a workout day with my trainer. I am now walking a 1/2 mile. Too bad it’s not as easy doing it on the ground as it is doing it on a treadmill. I asked my trainer about that and she said that the treadmill is doing a lot of the work for me, but that the results were still beneficial. But you should see them trying to get off the treadmill.
[5:03:47 AM] Magdalena Obert: Those things are high off the ground. So they have to run around looking for a step and then someone gets on either side of me to get off. They are used to it from other MSers in the gym.
[5:04:53 AM] Magdalena Obert: I’ve done very little trading because of the holidays, but the little I’ve done has not been bad. Yesterday was pretty good with NZD.
[5:06:01 AM] Magdalena Obert: I happened on it and it was definitely on an upward trend, so I rode the trend.
[5:10:17 AM] Magdalena Obert: My art work is going off in a different direction. I discovered mixed media! That’s right up my alley. You use whatever your heart desires to make your picture. You can use, oils, acrylics, water color, felt pens, whatever it takes, to make the picture and you can use other items around the house like paper towel or evem pictures! Whatever works and isn’t that what life is all about.
[5:14:09 AM] Magdalena Obert: It’s about constant change and it’s about adaptation to those changes. So when I’m doing artwork, I think about those things. That’s wjy it is important to have those venues in your life; artisitic ones. They make you appreciate all the possibilities in life. I believe in possibilities and I allow whatever happens happen and just work through thenm whatever t takes.
[5:15:18 AM] Magdalena Obert: Well, I should end this letter as my bladder won’t wait much longer. I will talkt to you soon.
[5:16:28 AM] Magdalena Obert: I hope that you are stayiing strong and that you will be back with us soon.
[5:17:07 AM] Magdalena Obert: Love Maggie.
[5:17:53 AM] Magdalena Obert: (F) (F) (F)
It’s been a few days since I’ve written. Life has a tendency to roll away from me and disappear. Before I know it, a few days have passed.
Today I would like to talk about a few new things I have been noticing in the last few months and wonder if any of you have been experiencing this in the past or if it is shadowing you now. Let me know, okay? I am going through a lot of fatigue these days. My sleep patterns are worse than ever and perhaps that’s part of the root of these new symptoms.
Hair loss: I’ve grown up with very thick curly hair. A usual comment when I go to the hairdressers is, “Wow, you have a lot of hair!.” I do, I did. Now for the last few months, I would say that I’ve lost 50% of my hair. That’s a lot of hair. It rolls around on the floor. It lays with me in bed. It washes off me in the shower and hangs on my shoulders. Every time I comb my hair tons come out. I have developed a bad habit now of running my fingers through my hair, which I’m sure doesn’t help to pick up the strays hanging about. I think I’ve become compulsive about doing this.
I wake up in the morning and I don’t recognize myself. I look my age. People would literally stare when I told them my age even a year ago. Now, they still do that but I think they shouldn’t because what I see in the mirror says differently. I guess I see the truth and other people see the makeup. But when I’m at home sans makeup, its enough to make me run away from myself screaming down the street telling people to call the cops because there is a stranger in my house.
One of my friends told me about Biotin? We can look this one up together. It’s supposed to help with this problem. Hover over the word and we can check it out together. I’ll do my research after I’ve finished writing.
So I wonder, is this MS, my hypothyroidism, my meds, my Christmas stress, the recent surgery? Probably all of the above. Okay let’s enable ourselves. First things first. I need to make an appointment to have my thyroid checked. Come to think of it, that’s about all I can do as far as black and white diagnostics are concerned. I don’t know of any other tests besides blood work that would be an indicator. I did have recent general blood work and that came back OK. I had a severe case of iron deficiency anemia, but that’s under control now. Has it something to do with the venous insufficiency in my legs? It’s a mystery. If I find anything out, I will let you know. Meanwhile, I will get my thyroid checked. I’m also waiting for the compression gear for my legs. I hope they help since they cost an arm and a leg, or should I say two legs.
There are a couple of other things I can do about my hair. I need to make an appointment with my hairdresser and see what she thinks. I need to get it cut very short or cut off altogether and start over. The second thing I can do, which I’m already doing; is knit cute hats. I wear a hat all the time these days. I look like a cancer victim because you can tell there is not much bulk underneath the hats. Sigh.
Another conundrum, inability to realize what to do with something: It’s strange! I sat in the car a few days ago and placed my key in the ignition. I waited for something to happen when I suddenly realized, oh I have to turn it. I was working with a software program and I needed to hit ‘enter’. I looked at the button but for a moment, I didn’t know what it was there for. It passed and I hit it. I looked at my watch after showering to check the time. I realized it was upside down. I stared at it for a moment before I realized that I needed to take it off and turn it around. I could go on and on, but it happens many times during the course of a day.
So what is this? Who is going through this as well? Pipe up please! It’s only a few seconds that pass by before I recognize what I need to do, but it’s rather frightening. Will it get worse. What part of my brain is doing this? I’m afraid that soon I will have to give up driving altogether because of this. I hope not because it is my one freedom. I only drive one day a week as it is. But this hesitation has no place in driving.
I’m almost certain because of this third symptom that I can connect my hair to my thyroid. I am freezing cold all the time. This is another symptom of hypothyroidism. I experienced these two symptoms together once before when I first discovered that I had hypothyroidism. I sit around with an electric blanket wrapped around me. The other day I was out with a friend shopping and we found a lapghan that was like an electric blanket. I snatched that thing right out of her hands and bought it. Now I have this cute little lapghan in my office at all times. I keep asking my husband, “Aren’t you cold?” He tells me no that it’s just me. Argh, frustrating as all get out.
The third thing is the sensation of burning legs. I can’t sit still because of it. It literally feels like my legs are burning. I know that this is not connected to the venous insufficiency because I asked my doctor on my last visit. The soreness is related but not this fire burning sensation. I think this one I have to chalk up to paresthesias, where for some reason my brain is telling me something is there when it’s not. It’s a common neurological symptom across a broad spectrum of neurological diseases. It’s painful and exhausting. I try cold showers, but I’m so cold already from the above symptom. So I’m damned if I do and damned if I don’t. They burn on and off. It’s a perceived symptom. It’s like when I went through the sensation of a bug on my face or hairline. I kept looking in the mirror trying to find that bug and couldn’t find it. But I would feel it crawling day in and day out in my hair or on my face. Drove me nuts. I hate bugs. I’m one of those girls that runs screaming from the room when a spider waves around in the air.
So I’ve been dealing with these tiny issues that become very large issues when you’re dealing with them in solitude. You can’t help but become obsessive about them. I need to work through these things. A couple of them, my doctor can help. Maybe some vitamins can help as well. The burning in my legs, who knows. I will just have to ride this one out I think.
The fatigue? Well if I tried to ride that one out, I would be six feet under still twitching with it. I do hate when it rears its’ ugly head to say, “Hey remember me? I’m still here and I’m going to really bug you for awhile.” But that’s another whole blog. Fatigue deserves it’s own page.
What is our job? Enabling ourselves to live life to the fullest with MS! So that’s what I need to do. When several things hit all at once, it’s hard to uplift myself. That’s been the battle these last few days. But I find that the first thing I need to do is recognize it in public. “Yeah, I’m going through this and that right now.” By ‘in public’ I don’t necessarily mean to a group of people, but in public to myself. If I ignore it, then I don’t fight it. I allow it to exist. So admitting it is the first step. Then the second step is medical. Get my butt in gear and get to the Doctor’s office to run some tests. More than likely they will be normal. But I have to take things step by step nonetheless. The third thing is where my inner core comes into play. How to deal with it and how to come out of this depressive slump I’m in because of it.
I need to lower the stresses in my life right now and Christmas is not a good time for this. Christmas is another whole story for an entirely different blog. It is enough to admit that holidays and I don’t get along. (Excuse me while I turn my afghan on and get another cup of coffee.)
Okay, I’m back. Where was I? Oh yes, enabling myself to get through this holiday season. My youngest son is coming home and I need to prepare for him. I haven’t seen him in a year. He’s a sweet young man with problems of his own trying to survive in a world where the economic status of this country plays a huge part on his income. So we will whip out the checkbook and help him out because he will never ask for help. Isn’t that something? He is incredible. I love giving to him because he doesn’t expect it from me, maybe just a little because he knows me.
I will keep you in touch but my connecting with you over the next couple of weeks may be hit or miss. It’s the holidays and I envy those who have normal ones. I go through the motions, set up a tree etc., but my heart is never in it. I can’t go out shopping like most people (that’s probably a good thing). I do shop online (that’s a bad thing).
I hope that you all have a very happy holiday season and try and stay positive. I’m struggling just like you are for various reasons. We all have our humps to get over. This is a big one. This is a time of loneliness and envy of healthy families, though I think those are far and few in between for one reason or another.
Let’s concentrate on the New Year. Put on a wig or a hat and smile. If you smile when you don’t want to smile it really does help. Smiles and laughter are contagious just like yawning is. These things, although put on at first, will actually have you smiling and laughing for real after a bit. So do it. But for me the most important thing is to stock up on hugs. I love hugs.
So from me to you over this holiday season a great big HUG!
Today has been a crazy sort of day. I woke up at 4 AM because I was too hot and you know what heat does to people with MS. So I crept downstairs to cool off. Of course, I never went back to bed. I always leave my computer and the glow of the screen beckons me.
I have been at my computer most of the day working on this Word Press site. I’m doing this for you and I’m doing it for me. I feel that there needs to be a better way to communicate between all of us. Unfortunately, we are too many. So the Internet becomes a resource for us. I will do my best to provide a site that all of us can relate to.
I had an interesting conversation today. Actually it wasn’t a conversation it was through e-mail. He mentioned a symptom of his that totally floored me. The reason why is because he described a symptom that I had been having for many years now. Allow me to tell you the story.
About 20 years ago, I began to have tiny twitches in different parts of my anatomy. I didn’t know what it was. They came out of the blue and lasted but a few seconds. As time went by, they became stronger and lasted longer, however; I never knew when to expect them. They still came out of the blue. And then there was a change in the symptom. I started to have them at night. At first I thought that they were that sensation that you get when you are about to fall asleep and you feel like you’re going to fall off the bed or something, so you jerk. That is what happened to me. But my jerks came from my torso.
These jerks became stronger and lasted longer as time went by. And then they began to infiltrate my daytime. It was an abdominal sort of jerk which included my shoulders. And again they were an embarrassment to me because I never knew when they were going to happen.
I saw doctor after doctor. They looked at me as though I were crazy. At this time, because I did not know that my symptoms were neurological, I was still seeing an internist. I was miserable with these jerks. They took over my days and nights. I would lie in bed and my husband would hold me to try and quell the jerks. But that didn’t help. Allow me to be frank with you. Having an orgasm was a nightmare because when you have one, at least for me, you sort of go into a spasm. Well that would initiate a jerk that lasted forever it seemed. So that put a damper on sex.
I can remember a time when I was on holiday with my sister and we were walking into a mall. There were workmen on top of the building doing something or another. Suddenly there was a loud clang. That initiated a jerk. It happened while I was walking and it made me stop and I was contorted with these jerks. My sister didn’t know what to do because I had not told her about it. Eventually they stopped and I had to sit down and explain to her what had been happening to me. She was the first one outside of my husband that I told about all the mysterious things that had been happening to me over the past few years.
We moved out of state and so I had to start all over again looking for doctors. By this time I was under psychiatric care as well. I was diagnosed with posttraumatic stress syndrome and rightly so. I was placed on therapy and I was taking many other drugs. But all the drugs that I was taking were for different occurrences of symptoms as it is today. I think we moved twice more before I was finally diagnosed with MS. And I’m sure you all know how long that takes if your tests do not provide a black-and-white portrait of MS.
I had sleep studies done and I was diagnosed with sleep apnea which to this day I feel is incorrect and so does my husband. They never watched the film that they take while you’re sleeping. They just look at all the reports that are spewed out of their machines. I had many episodes of non-breathing but that is what happens when you have a jerk. All of the air in your body gets pushed out of you as you jerk. And one jerk follows another by seconds where it appears to be a continuous jerk whereby you have all these tiny seconds of non-breathing episodes.
To this day I still have these jerks. I have since learned that they are called myoclonic jerks. They can also be call hypnogogic jerks. They are closely related to restless legs syndrome which I have to the extreme as well. There are medications that help but don’t stop jerks. But at least the medications help to modify their severity.
The other thing that made them so embarrassing to me was when I had the strokes and the air was pushed out of me I would make a guttural sound. I couldn’t help it. So if any of you have this strange symptom tell your doctors my story and see if this helps. It seems that when doctors are faced with unusual symptoms that are not your average everyday type of symptom they forget that these are real, there are medical terms for this, and that there are medications that help. The medications that help me for this are Parkinson’s drugs. It is a movement disorder and you should seek help from a neurologist who specializes in movement disorders.
So be forewarned. If you are experiencing jerks in your arms or in your legs and they are arbitrary, unexpected, and very sudden lasting but a few seconds, you should relate this to your doctors because they could turn out to be a nightmare that you don’t want to go through. I take these jerks in stride now. When they happen and if they happen in public they are not so severe and I can get away with pretending that I was startled. Oh, and by the way, if you have a strong startle reflex which I do, this is also related to it. And what I mean by an unusual or strong startle reflex, it means that your reaction to a noise or to someone entering the room unexpectedly provokes in you a very strong startle reaction, that too is a movement disorder.
What bothers me is that rather than pulling out their manuals to try and find out what is wrong, particularly with women, they suggest that you see a psychiatrist or ask you if you have been under any stress. I always respond with, “of course I’m under stress, wouldn’t you be if you were jerking around?”
Don’t let them send you running to a psychiatrist. Be your own advocate. If you know something is wrong and you firmly believe that there is a diagnosis for what is ailing you, fight with the doctors if you have to. If that doesn’t work, find another doctor. Keep looking for a doctor until you find one who believes you.
I hope this helps some of you who might be experiencing this. It is a rare disorder but it is a disorder and not a psychiatric issue.