Let’s get this out of the way. Anyone on Aubagio? I am. It’s a new drug therapy. One of the things you have to watch out for is liver or kidney damage. Well during my hospital stay a couple of weeks ago there was a series of tests they do with lots of blood work. I got a hold of my blood work and it looks like my liver is reacting to Aubagio. So be forewarned. Get your blood work done monthly, as instructed, if you are on Aubagio. Medical
Update: I’m doing fine. I have home Nurses coming twice a week and my lungs are clear. Yipee!!! I have to get an x-ray for my primary Doctor to make sure all the pneumonia is gone and then have a visit with my Pulmonologist. I don’t want to talk medical stuff anymore so I will leave other details behind. This is not that type of blog as you all know.
Okay, so what’s new? It amazes me how the body deteriorates with MS (Multiple Sclerosis). Now you know that I am frank and candid on this blog so I will admit to having to wear diapers now. I have little control over my bladder or bowel these days. The second I feel that I have to go, I have to run. Imagine it. You are talking to someone and then suddenly you get that inkling that you have to go. You pale and then run away from the person you’ve been talking to and you frantically search for a bathroom. If you don’t find it within the next few seconds, you have to let it go. The person you were speaking to is left holding their glass of wine or whatever with a confused look on their face. You return and pick up where you left off as though nothing happened, if they are still there.
What can you do? Do exactly that! Who cares what they think. The point is, is that you came back and you continued as though nothing has happened. We have to do that. In every difficult circumstance, pick up where you left off once you deal with whatever.
I am so very proud of you. Life can seem so debilitating for all of us. I admit to this, particularly in light of some setbacks. However, in spite of dark clouds, there is a puffy white one behind them just waiting to break through and it does, it always does. Just be patient my friends.
For me, my white cloud came in the form of a beautiful petite woman by the name of Emily James. She reached out to help me with a program I’m working called Jeunesse. She is taking me by the hand and showing me, step-by-step, how to grow this system Now how many program mentors online not only tells you this but actually does it. Amazing. I feel so fortunate to be working with her. Thank you Emily!
If you want to know more about this program, here is the link. http://www.onlinewithmaggie.jeunesseglobal.com/ You actually should check it out. We need everything we can to make ourselves feel better about ourselves. I would go into more details here but this not that type of blog either. Just know that this is the solution to many problems that women have, particularly as we age. I have to say that men are getting on the band wagon as well. Trust me, you know I would do you no harm. Feeling good comes from the inside out. And why not? We all deserve to feel good! Enough said. Really, do yourself a favor and check it out.
Until next we meet,
Maggie signing out!
Oy vey! When it decides to rain on my parade, it pours! I last left you with how difficult life can be and issues of trust, right? Well isn’t it interesting all the twists and turns that life gives us to handle whether we like it or not?
Talk about difficult weeks, I guess I should be talking about difficult months.
Now I know that ordinarily I’m up, but I gotta tell you, it’s tiring trying to hold myself afloat these days. Here is what happened.
I have asthma and, of course, you know that I have MS. Oftentimes, towards the fall, it seems that the pollen, molds and spores or whatever is out there, attacks me and I come down with bronchitis or asthma. No big deal right? Except that mine always lands me flat on my back in the hospital. It settles in my lungs and just won’t leave. I’ve had pneumonia from this.
Well guess what? It happened again!
About two weeks ago, I landed up in ICU because I could not breathe. I had pneumonia. After 5 days of ICU and a couple on the step-down unit, I came back home. However, I had placed an ad in the paper for a Garage Sale. I wasn’t about to let that ad go to waste. So just a couple of days out of the hospital, I had my sale.
Both days went well as far as the sale is concerned but in between waiting on people, I decided that the hedges needed some pruning along with a couple of trees.
What was I thinking? Sure throw my head back and wave around the pruner and suck all the stuff in that the pruner cuts, right? Well you guessed it, back into ICU I went with bilateral pneumonia.
What was I thinking? I wasn’t.
It has been an incredibly difficult two weeks! I have been overtaken by an MS exacerbation. This is not a new one, it’s just one that has lasted for several months now. From day to day it ebbs and flows wreaking havoc with me. As you all know, the world does not stop when you’re ill, instead at times, it seems to escalate. However, all you want to do is crawl underneath the bed covers and hide.
In this episode of “Oh No, Not Again!” we find Maggie waking up to tortuous pain behind her eyes three months ago. Oh no! I won’t bother with all the issues that had to be dealt with, the medication changes or not, nor the lengthy list of ailments that you will find on 99% of all other blogs regarding MS. You also should know by now, that I don’t dwell on these things. Instead, I DEAL with them.
But sometimes…….. Yes, I cowered, cried, slept, did not sleep, yelled, cried some more, complained, threw tantrums and on and on. My vulnerabilities were low. NO! Not my medical vulnerabilities but my emotional ones.
I think most of you know that I do online marketing. I have struggled with this for nearly 5 years. I have taken online courses and spoken or chatted to many people. I have tried many different programs and systems out there but there was always something missing. It was like I had a suitcase full of clothes but was color blind, had no sense of taste and a total disregard for the condition of the clothing, not ironed, dirty perhaps?
In this go-around with MS, I just lost it. I felt like everything was not under my control. I can hear you all shrieking right now. Oh no! Not you! Yes me.
A person gets tired, you know? Picture a notebook with tabs. All these tabs have different headings. The headings are all the different facets of your life that you juggle. When I opened up my notebook and looked at all that I had indexed, it overwhelmed me. Why? Because most of it was incomplete. There didn’t seem to be any cohesiveness to it. You read and you think, well I should put this in this other section of the notebook so that I can find it there too as well as here. Or you find that you took someone’s name to call, but no phone number. Worse!!! You took down a number but didn’t right down who it was for. The further I looked into my notebook or looked at my life, the less in control I felt. So what good is a notebook?
My notebook is my life. I’ve been handling it poorly of late. When I’m ill, I don’t have much energy but maybe just enough to crawl into a corner with my blankie and watch everyone go ahead with their lives. I want to be a part of it, sure, but it takes so much effort. And hey–I’m fractionalized. The pages of my life are askew, unbalanced, incomplete.
How does one get this way? Well, illness of course which leads to depression is a huge reason, but we all have our favorite little pills to help us with the depression part and what? Still no get up and go?
I thought and thought about how I was feeling. Why wasn’t I my usual combative self in fighting MS or in finding meaning to my personal and business life. Aha!
TRUST! I had lost faith and trust in myself and in others. I usually keep this blog very specific to MS, however I want to talk about trust in business as well. It’s all life anyways. One correlates to the other.
There is a thing that many if not all of us do or have done in the past. We keep a bit of ourselves for ourselves. This is good. It is healthy. When it becomes bad is when you know you have something that can help someone else, but you hide it. You don’t want to share it and that’s another whole new subject about why we would do that. This is not that kind of blog.
I realized that in my business as in my life, in certain areas, people were not helping at all. In fact, they were making situations more difficult than they should have been. Isn’t it often said that if you don’t know the answer to a question, that you should ask instead of making a mistake? Right? Well, I have been asking for help in many areas of my business from associates or I had to pay to get the help. The strange thing is this. Even when someone is answering your question, oftentimes, they still don’t give you a complete answer. Again, why? FEAR, COMPETITIVENESS, etc… They want to keep the whole bag of candy to themselves. How sad.
I can pride myself in saying that I am quite the opposite. You ask me for a piece of my bag full of candy, I will give you the whole bag. That is my makeup. I realized that I was worn down from trying too hard in too many areas without gaining any foothold in trying to coalesce everything that was splattered all over my world. So when I became ill, I BECAME ILL, in my thoughts and body. One contributes to the other, a symbiotic relationship.
I’ve been in ICU for 5 days last week with pneumonia and my MS. I’m on very high doses of steroids….well you know the dance. So I’m hanging around in my house when I was finally released, and looking over my literal tattered notebook, thinking to myself, “Am I stupid? Everything I need is right here! Why can’t I make this thing gel? I know that I’m cognitively impaired, but come on now. This is ridiculous.”
I met a beautiful woman online and I hope that I am not overstepping her boundaries by naming her. I name her because I am proud and delighted to know her. She is Patricia Selby. She is my mentor in a program that we are working together as business women.
When I first chatted with her in Facebook, she was everything I wanted to be, and once was, as far as insight and acuity. She knew what she wanted, how to get it, and what path to take. For some reason, this Heaven Sent gift to me decided to give me her bag of candies. She actually answered in detail, my questions. She made videos or mp4s to clarify things. In the space of a couple of days, she took a frazzled and bedraggled lady (me), and made me smile despite how sick I felt. Here I was feeling that I could not trust anyone again including myself, then along she comes and straightens me up, dusts me off, and tells me, “Let’s make money together and have fun doing it.”
Pat Selby deserves recognition. I realize that this is a tiny blog, however; even tiny blogs get read.
Hang in there folks and keep in mind. The kindest thing that you can do for yourself, is to give away your bag of candy, you’ll be all the more richer for it.
I’m sitting here with my nose two inches from my huge desktop screen, ( can’t see very well anymore), and wondering, yet again, why I couldn’t sleep. You would think with all the drugs I’m on, which normally makes me sleepy, that I would zonk out. Instead, I fall asleep all day long for a few seconds or a few minutes. Makes life very inconvenient.
For instance, I went out yesterday to see a movie I was looking forward to see. However, because my husband wasn’t with me to keep poking me awake, I bought all kinds of junk to munch on during the movie. Well….that didn’t work too well because I would suddenly wake up to find my food on the floor and all over me. Luckily I didn’t miss out on anything too important………except……the last five minutes. Darn it, wouldn’t you know it? Finally an answer to the story which was about to end. But no….my body decides it had enough of this story and off I went to dreamland. It had to be a good five minutes.
Next time I woke up, people were saying “excuse me,” as they tried crawling over my slumped body half off the seat. Someone even asked me if I was okay! I nodded still very confused as to what had just transpired. After most of the people had left the theater, I realized that I had no idea how the movie ended and I was so frustrated. I slowly made my way out into the muggy heat and sat down at the first bench I found.
While sitting there I looked around at people to see if there was anyone I recognized as being in the same movie theater as me. I finally spotted a group of three people about to walk past me and embarrassingly explained that I had fallen asleep and would they mind telling me how it ended. All three started to talk at once and wouldn’t you know it, it had one of those ambiguous endings where everyone thought it meant something different to them. So I received three different interpretations as to the meaning of the movie. I thanked them, but as they walked away, I could still hear them arguing, among each other, as to what the story meant at the end.
So you see? It’s always better to ask for help no matter what the problem is. Yes, I received three different interpretations but at least it was food for thought. I’m sure if I had seen the ending, it would have meant something else to me.
Back to my sleepless nights. So now if I were to ask my Doctor, yet again, why am I not sleeping very well, if at all at night, his pat answer might be, as it was before, “Oh that’s common with MS.” Not the answer I’m looking for because I really want to know, specifically, why I don’t sleep. I guess there is no real answer and thank you very much, but I don’t want yet another pill to help me to sleep.
Tying this up with the movie problem above, yes it’s better to ask for help or at least for an answer to a problem you have. You don’t always get the answer you’re looking for but at least you received an answer. Does this solve the problem? Quite often not. Yet again, it does in it’s own way. You now have food for thought OR you can continue to seek an answer. In either case the question left me with questions, but that’s okay.
Do you sleep at night? Do you know why you don’t? Hugs, Magdalena
I am so tired today that I can barely keep my eyes open. It’s all these darn drugs I’m on. I’m now a narcoleptic because of them.
This morning, I was working on my computer and the next thing I new is that my coffee cup went flying off my desk, shattering on the floor into tiny pieces. Coffee was everywhere including my mouse and keyboard. Apparently, as so often happens, I had fallen asleep at my desk and woke up with a start. I knocked over my cup. It was a good thing that my kine and understanding husband was home. He came running with paper towels and helped me clean this mess up.
He keeps me smiling.
Yesterday, another MS friend of mine who hasn’t gone out in ages, was finally convince to come over to my house. Normally, it is me who goes over to her house and takes care of her. She is severely depressed and won’t seek help. I finally convinced her to come over by telling her that she could stay in her nightgown, which she does all day anyway, and told her I would drive over. All she had to do was walk out her front door into my car and no one would be the wiser that she was out in her nightgown. I was so proud of her when she walked out her front door. I half expected her to not comply with what I wanted her to do. She did not dissapoint me.
She keeps me smiling.
I’m so happy that despite the fact that I’m half blind, (I’m sitting here with my nose on the computer screen in order to type to you.), that I can still compose music. The cognitive areas of my brain that are leaving little black holes in my brain, have left this area of artistic endeavor alone.
This makes me smile.
So now you tell me. What keeps you smiling?
Hello sweet friends! I’ve had an interesting month! How about you? I am trying very hard to get back here as often as I once did, but life gets in the way sometimes and you have to prioritize events, tick them off your list as you reconcile them, and somehow my blog gets pushed to the bottom of the list.
My myoclonic jerks were so severe that one night it tossed me out of bed. I woke while on the way down, put my arms out to stop my fall, and proceeded to break my left wrist. Ouch! So there I went to another specialist who promptly put me into a cast telling me that I could not get out of a cast for 8 weeks.
What actually happened is that the cast was removed after four weeks but I had to wear a brace at all times for another four weeks. It was time to deal with, once and for all, my restless syndrome and my myoclonic jerks. It was also time to change neurologist.
When a Doctor and a patient wed, so to speak, you expect your Doctor to continue to show the same interest in you over the years as you do them. Right?! Okay, one has to take into consideration that you don’t see one another for months at a time, but heck; if I didn’t see my wedded husband for months at a time, I would expect him to pick up where we left off. If he didn’t and I didn’t, well then perhaps it would be time for a change as well, in that scenario.
I was feeling like I had to re-introduce myself each time I met with my neurologist. I had to clue him in on what our last conversation was about, my medications etc… Now get this! He is the head of one of the MS Clinics here in this state! I finally figured out what was up with him.
He heads several of the studies with the drug therapies offered to us. I had decided, during the last year, that I would not take any more of these drugs to see if I felt better on them or off of them. He did not like that and strongly suggested that I stay on the therapy. I stuck to my ground. Since then, it’s as though he is dealing with me because I am his patient, but I’m not a person of interest anymore. It was definitely time to move on.
I love my new neurologist. I think if I walked in disguised as Graucho Marx, he would still know that it was me. He too is the head of a well known Society for MS. I am not mentioning his name here because I always check with the person I write about, if it’s okay to write about them. I haven’t done so with him. He has tweaked and tweaked my medications to a point where my MS symptoms that were visually startling to a lot of people, has calmed down. I am no longer afraid to be seen in public. I’m not frightening people with a sudden jerky movement of my arms or torso, or twitching uncontrollably because my legs are crawling with ants. So it’s a change of seasons in many ways. I’m sure that some of you are going through your changes as well. Feel free to let me know and to share with others. Your comments are welcomed. You will notice that I’m not on as frequently as normal, but I’m also thinking about changing up the style and theme of this website. Continue to hang in there as we all progress, step by step into whatever the future holds for us. At least none of us are alone. We have each other.
I am sitting here listening to Norah Jones and thinking about you. I’m wondering how you are and if you are as tired as I am waiting for consistent warm weather–then again, dreading it and you all know why.
Heat! What to do about the hot days in front of us where we turn into wet noodles without a trace of musculature or spine. We succumb to heat and turn into people scratching at their bodies from pin pricks of fire tracing their way up and down our legs and arms as if it is rush hour in New York City. Our legs no longer hold us up and our heads become too heavy for the thousands of bones in our body structured to hold them up.
The inability to think straight nor caring if we do or not is another perplexity. The inexorably and inexplicable drainage of strength and motor skills hits many of us as well as a myriad of other heat-related symptoms, too numerous to mention in this short blog.
This blog does not sound like me at all, does it. IT’S NEGATIVE?!!! Not really. I am just preparing myself for what lies ahead, as we all should. Prepare for what lies ahead. This could be an event you are looking forward to or something you know that is going to be difficult. Right? Don’t we do so much better if we are prepared?
I’m just telling myself to shut up with the litany of where is spring or summer knowing full well that when it arrives, I hide like a mole in the middle of dead winter in my air-conditioned home.
I don’t know about you all or where you live, but here–the reluctance of a full-blown spring followed by summer is something I should be grateful for. Let’s enjoy this weather while we still can.
I went in to see my hematologist on Thursday. They do a quick blood test, in-house, to tell you what you’re hemoglobin is. Mine was fine on Friday. However, they do send the blood work out to get a complete CBC, and this morning I received a call that my Ferritin level was low again.
Now I’ve been fighting this anemia thing for about two years now, but I can always tell when it is starting to drop. I begin to crave nuts. Isn’t that strange? I think there is a reason for this that I’ve seen somewhere, but I don’t have the time to research it again right now.
I have to admit that, this usually happy-go-lucky person has been plagued these past years with numerous problems, let alone the myriad of symptoms with Multiple Sclerosis. I feel like the only thing I do when I go out, is to run to or from a Doctor’s office. That’s pretty sad if that is the highlight of each week.
On Friday, however; I was visited by a friend of mine who I met through a group online called Meetup! I started the group called “Flight or Fight” for MSers. We are a tiny group where the focus is on enabling ourselves and not focusing on all the negatives. You can find out more about Meetup here. It’s an interesting site where you can join an established local group or you can start your own. I have never been a follower, so I started my own.
Linda came over and she wasn’t feeling well. The fact is, despite not feeling well, she placed one foot in front of the other and came out anyway. She not only has MS but she has fibromyalgia as well. I was so proud of her and her accomplishment of getting out, that I took her to see another MS friend who has capitulated and become captive of MS. She lives in the dark and seldom goes out.
This lady is more than capable of getting out just like Linda and I do, but she doesn’t believe that she can, therefore she can’t.
So be careful, my friends, on how you think during the course of each and every day. Your thoughts can and will control how you lead those 24 hours. I refuse to sink down my rabbit hole. I, instead, stand outside of it and point people away from it so they don’t get swallowed up in it.
Trying is the right thing to do. You have to try. If you fail and don’t get out, you haven’t really failed. Each time you try, you get one step closer to accomplishing your goal. It’s in the trying, that strengthens you.
Until next we meet.
It’s around 6:26 a.m. here and I hear the early morning birds chirping outside my window trying to wake people up. I’ve been up most of the night, as usual, and maybe I should have started chirping myself way before them. Can you imagine? They would surely lock me up for good!
Kidding aside, I have so much trouble sleeping these days. It’s gotten so that I just stay up as long as I can because I know when I try to sleep, in a few minutes to half-an-hour, I will be back up pacing the floors or back at my computer. Then the attempt will be made to go to bed again, and rinse and repeat.
I have learned a lot about Restless Legs, Movement Disorders, etc… The reason why I include the general term of Movement disorders is because along with the restless legs, I get myoclonic jerks. They are also called or compared to sleep starts. You know? The feeling one gets just before falling asleep where suddenly, out of the clear blue, your body jerks? That’s what I get on and off all day long. Mine can be so hard, the jerks that is, that I literally almost feel like I’m giving myself a whiplash. On bad days, I sometimes wear a neck collar. I don’t go out on those days because I can frighten people. Imagine it. You are sitting next to this lady and all of a sudden, she grunts very loud and jerks through her torso and then she sits quietly again.
Here is a paragraph from “The Neurocritic” that explains restless legs quite well.
Restless legs syndrome (RLS) is a neurological disorder characterized by throbbing, pulling, creeping, or other unpleasant sensations in the legs and an uncontrollable, and sometimes overwhelming, urge to move them. Symptoms occur primarily at night when a person is relaxing or at rest and can increase in severity during the night. Moving the legs relieves the discomfort. Often called paresthesias (abnormal sensations) or dysesthesias (unpleasant abnormal sensations), the sensations range in severity from uncomfortable to irritating to painful.
I am taking several different medications for this but I seem to gain an insensitivity to these drugs as times pass by. This leads me to searching online for other possible methods of relieving these symptoms. They are quite horrible and leave you feeling utterly helpless.
Let me tell you about the most interesting one I’ve found that left me giggling. Again it was from the “The Neurocritic.”
The patient reported that he would get complete relief from RLS symptoms, granting him a normal sleep following sexual intercourse or masturbation. Pramipexole was introduced 2 h before bedtime with significant improvement of RLS symptoms, but whenever he was without medication, he returned to sexual behavior to get relief from RLS symptoms.
Now imagine this? All of us men and women going down to our local “adult toy store”, and buying the latest and greatest! We could then justifiably lay claim that it is for medical reasons as well! The online stores and the brick and mortar stores would see an increase in overall sales!!! Hmmm, I’m wondering if there is a potential business to be made from this?
Till me meet next. Hugs.
When you learn Internet Marketing, one of the things that are taught to you is “value”. You learn about value in a different context in a way. Usually, in this type of forum, it means of gift that one might find valuable. It could be valuable as far as a technique in Internet Marketing or it could be a method of self help, yet another way it might be considered is as an out-and-out gift!
Sure, it’s important to have context that creates a sense of “value” when you’re trying to make money online with an internet business. You want to attract people to you and one of the best ways to do it is to make them want you. Right? However, I want to talk about value in a different sense, the old-fashion sense.
When you’re talking about value in Attraction Marketing, it means one thing; to bring people into your website to have a look around. When you talk about value as far as people are concerned in the general public, I akin it to self worth. It is one way of looking at it. This is my topic.
The reason I went on about value in Internet Marketing where you can make money on line, is because that is what I do to generate a lucrative income. However, when I speak to you, particularly those with Multiple Sclerosis and other debilitating diseases, I speak to how you feel about yourself and how others feel about you.
Let me correct that last sentence. In business, how people look upon you is important; however, in my conversation with you it’s not. Only you need to care about how you feel about yourself today. Don’t give anything else a second thought.
Many of us who are ill, slide down, inch-by-inch and without fail in our opinion of ourselves. This has devastating consequences if not halted. If you think less of yourself, you will behave as less than yourself. If you behave less than yourself, you will think less of yourself. Get it? It’s a merry-go-round of self-deprecating insult to your soul. Not only that, as you go round and round, every time you get to the beginning to go around again, the level that you start at inches lower and lower. You still go round and round but now you’ve sunk down.
Get off the merry-go-round now!!!
If you stay on it, you will begin to enjoy it. It’s human nature. It becomes second nature until you don’t know of any other way to get through a day. I know this for a fact because I have a friend with MS who is going through this right now. However, she is refusing to get off the ride that is sinking her lower and lower. She doesn’t see it, and she doesn’t feel a need to get off of it, because she has become accustomed to it and doesn’t feel a need to change. She has no responsibilities to other people as her children are grown and so does not see how this might affect other people.
I am one of the other people in her life. Although I’ve tried and tried to tell her how I feel about the ride that she is on, because I am just a “friend”, her choice is to ignore it although her intelligence admits to me that I am right.
I want you to take a look in the mirror and see reflecting back at you a person of value. We are dizzy enough without getting on a merry-go-round. Stay off of it. The only person that matters, is you. The most important person in your life is you.
If you take care of you, then you take care of others in your life! It just happens that way.
It’s okay to feel down, but get “up” as soon as you can. Believe in you and the magic that you are to other people and to yourself. Take a hold of your life and start making positive decisions that has positive outcomes for you and others as a direct consequence of these decisions.
If you want to know more about me, please go to this link where we can meet. Here is additional information on me.
Hello everyone! I’m still here. I have so much to tell you and I’m sure you do as well.
It’s been a very difficult year but that’s not what this post is about. I wanted to let you know that in the next few months, you will see some changes on this site. I’m going to revamp it. It needs a change. You may see some ads here as well. Everything costs money either in time or hard cash. I want this site to support itself and this will help. Not to worry though. It may look a bit different but the feel and content and it’s philosophy will remain the same.
I’ve truly missed you and I will get to posting regularly in due course.
I have not abandoned you. I will explain in future posts what has held me up in postings.
I have missed you.
For the past 3 years, I have been searching for a way to make money in the comfort of my home not just for me, but for you too! You see, in a couple of previous blogs I made mention of SSDI (Social Security Disability Income).
Most of us are on it or trying to get on it. Yet whether you get help from Social Security or not, you are still receiving poverty level help. True, some help is better than no help, but there are some of us out there who heavily rely on this source as a primary source of income. That is just terrible! There are some of us who are not married and don’t enjoy a second income so they solely rely on SSDI. This forces them to live at home with a relative or live in some other circumstance that is not there preference. Add this to the myriad of disabling symptoms, one of them being depression, you get someone who is locked into a life of not many choices.
SSDI offers a work incentive. They allow you to work before taking away SSDI. You can work up to a certain monetary compensation before you are penalized with changes in your income from SSDI. I guess SSDI feels that if you make one dollar over their supplemental help, you are well on your way to having a normal monetary life. Not so! This places us in a position of fear. The fear is that if you work, you lose. It is illegal not to report your income. This bothered me so much that I went on a hunt
You see a lot of ads that say “Fire Your Boss!” Well I would like to be able to tell you to Fire Your SSDI. What!? Yes! Why not try and make an income from home where your disability is of no importance, and get off of SSDI to live a better financial life? Why not?
I spent a ton of money doing this. How? Well you see, I was gullible, innocent to the ways of the scammers out there, naïve, and uneducated with Internet Marketing. This is the source of where you COULD find the means to get work, Internet Marketing. As a result of being taken over and over again, I did manage to learn quite a bit about the workings of the Internet. Unfortunately, it came at a great price to my credit card finances, my personal finances, my family’s finances, and to my peaceful existence with said family, as well as my health.
I grow tired now because I’m not feeling well. I will continue this on the next blog. Stay tuned.
Please forgive me. It’s been awhile since I’ve blogged in MS Life and there is no good enough excuse for this, so I won’t question your intelligence by providing you with any. I have lost my focus, but I’m back.
Where to begin? Hmmm.
I will update you on my health situation. My MS has been surprisingly cooperative these last few months. It’s a matter of chemical control for me. Seriously! If I did not take the drugs I do, I would be a mess. No! It’s not any of the therapies because I have been there and done that. However, I do take many medications that control all my various ailments. Anyone who tries to take those drugs away from me, I will hunt you down to the ends of the earth!!! LOL
What is of particular annoyance to me is that I have a movement disorder. They call it Myoclonic Movement Disorder. Part of this Movement Disorder is that I have a Startle Response to everyday things. For me it’s auditory, although there are other forms of it. If I am startled, I react unreasonably startled and oftentimes it will set off a series of jerks that involves my trunk, head and neck. It is ridiculous at best. The other part of it is the constant jerking that I have during the day. Because I’m on a lot of sedative medication, I am in a state of relaxation that triggers the myoclonic jerks, once again, where I experience a series of the described jerks above. My head jerks to the right lightning fast and it is painful. This goes on all day on and off and gets worse if I’m sleepy or relaxed.
Top all of these movement disorders with one more called Restless Leg Syndrome and you will know why my medications are my best friend.
So far this summer, it has not been a bad year regarding the MS and I feel blessed. I have several other problems that I’ve been dealing with that indirectly are caused, in part, by MS. I deal with those things as they come up.
Strangely, even though my MS is doing okay, not rearing its ugly head, I have spent a lot of time both in New Jersey and PA seeing doctors. Such is the life of an MSer.
This is how I’m feeling these days. No matter what age you are, or what problems besiege you, or if you are feeling hopeless and helpless, follow my philosophy, and hang on for the ride of your life. Believe in you as I do. If you want to know more about my business click on this link Neucopia
This is my Multiple Sclerosis blog which has lived with me for 3 years now. I love writing in here about my disabilities or about “woe is me”. What I do emphasize as noted by my subtitle, is how I am enabled by my disabilities to lead my life the same as the next person, perhaps even better, because I view the world now from a different angle.
On other pages I spread my wings a bit further because I am not about M.S. It does not define who I am. I am also a musician/composer and an online entrepreneur. One site is http://www.trendyhandbags.net/
Another site is http://maggiesreviews.com/ where I either interview a band or write a review on a band that is either current or from the past.
There is also http://maggiesgreenworld.com/ which is not fully developed and several others.
My newest and most loved business is #Neucopia. If you have not heard of it yet, you will. It is spreading like wildfire all over the internet and yes, you will hear more about it from me as well.
My focus is on people who are living on SSDI and others who are struggling with their life. I truly want to introduce them to an online marketing solution that yes, even though you have probably heard it a million times before, IT WILL CHANGE THEIR LIVES.
Onwards and upwards is what I say. I’m a fighter only because my life has made me one. I’m strong even though I have felt powerless at times. I control my life and I am teaching others by example, how to change theirs as well.
It’s been an interesting few days and I have been gallivanting all around the Internet. I have been busy networking with other marketers who are in various programs of their own. I figure if they are out there searching for programs why not introduce them to mine? It’s a funny thing though. Most people react with suspicion because they have been taken, as I have, so often by systems that take you nowhere. They make it sound so promising in their initial capture of your attention, but after awhile, don’t they realize that we all become seasoned veterans?
Unfortunately, I am slowly coming to the realization that the later a person enters into a system such as Empower Network, the more saturated the Internet is with news of such an enterprising program. You then start confronting more and more people who are hesitant about joining up with the program. Isn’t that sad?
Here we have a program run by two enterprising men who have come from a long way off in life, literally changing their lives; who then turn around and want to help others change their lives as well with an innovative and unheard of compensation plan. It’s such a drag really. How does one change someone’s mindset who have been hurt once too often? I know because I have been there myself. Yet for some reason when I came across Empower Network for the third or fourth time, I decided to take a leap of faith. Why you ask? Because this time I took the time to listen to the entire audio instead of listening to it with a closed mind and heart.
Why did I listen this way at this time? I’m not sure. I don’t know how to explain it. Maybe I was feeling vulnerable that day. Maybe I was too tired to turn away from the audio. Maybe I was feeling kind regardless of past ventures. It’s a difficult question to answer.
I do know this. When I listened to both Daves individually and heard their stories separate from each other, I realized the depth of hurt these two guys had been through. You don’t experience life like this and not come out of it a changed person. It happened to me as well.
A person needs to be diligent when faced with an opportunity. You have to be able to recognize it when it comes along. If a person is completely turned off to the whole idea, then I wouldn’t even approach them. But if someone comes across my desk as actively seeking an opportunity, then I do approach them. They are still looking, like I was, despite the preponderance of bad experiences out in the Internet world. You have to be listening with your heart and not with your money.
Are you still with me? Good. I know you’ve been hurt. I know that you are tired and wary. I am too. Don’t lose your heart in all this. Keep it intact and safe so that when something like this comes across your path, you will be able to tell the difference between someone who is out to scam you and someone who truly cares about you.
That’s what you will find here at Empower Network. Lots of love, lots of effort to help you, lots of product to educate you not only in Empower but for any other venture you might have.
Take a deep breath and take a look see. Fill out the form on the right.
You would not believe what’s been happening around here. I am so incredibly busy and sick at the same time.
I need to apologize for not being around, but I truly have been ill and still am. I need to have two surgeries and I’m going in this coming week to consult with two different surgeons. When it rains it pours.
I’ve also been busy with a new Foundation that I’ve started called, A Song For Cali. There is this little girl, whom I’ve never met, who is having a difficult life at the age of 5. For the most part of her life, she suffered from Type I Diabetes but in a very severe way. She often stops breathing and can do nothing to help herself. Her mother has been watching her daughter day and night ever since the child was born. I learned from little Cali’s brother that what is needed is an Alert Dog. These dogs run upwards of $20,000 and are amazing. People who are diabetic emit a certain odor when they are about to have a seizure and the dogs are skilled at notifying anyone and everyone around, that this child is about to pass out or go into a coma.
I’ve entered a contest at Indaba Music for Sarah Vaughan. I’m no singer by any means compared to the bevy of beautiful vocalists who came out of the woodwork, but it is so much fun.
I have more to tell you, but it’s getting late and I’m very tired. We’ll talk soon .
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.