Yes indeed there are good things from having MS and living with it. Please remember that 23 years ago there were no computers for the masses or anything else like they have now. So there was no quick way to reach out to others or learn much of anything about MS. I went to the library in search of information, but what I found was not helpful.
So now that I started my MS fight I had to open one door at a time and see where that led. First up was going across the road to a neighbor’s home for I knew the couple there both had MS. I had never really spoke to them much only a greeting or so at our mail boxes. I didn’t know what to expect but had to start somewhere.
Nothing like going to someone’s home and saying "Hi! I have MS and would like to talk to you about it", but that is exactly what I did. They were very nice and we talked for some time. Upon leaving the husband’s only advice to me 'be kind to yourself...you will know what I mean after a while." As time went on I did indeed figure out what he meant.
Shortly thereafter I had another MS appointment and I asked my intimating doctor if there was more information somewhere about living with MS. He then wrote down the phone number of the MS Society and said give them a call. When I got home I did and they were so nice and said they would send a big packet of information to me and to I would be added to their mailing list. A few days later the packet arrived and I must admit I was upset seeing my name with it and tears spilled down my cheeks. I really didn’t expect much help, however I was wrong.
There were all kinds of things inside geared to help me with this journey. It took me a few days to absorb it all and then I called them again with questions. I said I wanted to try the nearest MS support group and asked how I could join it. At that time the nearest group was in another town, but they arranged for a couple to pick me up and take me to the next meeting.
The next month arrived and the couple came for me and off we went. I learned the wife had MS so the husband would take her and then leave. We talked a bit then we arrived at this school for special children. This MS group had 300 members so they needed a big meeting place. We walked in and they showed me around and said OK we will see you later, just go around and mingle with others. I was left standing there thinking, here I am the shyest person on earth and I am to mingle?? They must be kidding!
So I just meandered around and saw everything MS can do to someone and I was quite shaken. Then the leader of group came over to welcome me and saw my distress. He said "Look around and you will see that most people are walking. I want to introduce you to those who cannot so you can learn something." I certainly did.
What I learned was that no matter what disability someone had they were a person first with feelings, emotions, and personalities and they were there to help others and themselves. I quickly saw a lot of abilities each person had and the absolute grit so many showed. They came from all walks of life. I was not alone with this anymore and my shyness dissipated. I was now learning good things that one can use anywhere in one’s life.
Next Blog: The Meeting and how it opened more doors to good things I had never imagined.
If my MS were a person, here is the letter I would write and send to 'it':
You have had this coming for quite some time so I hope you are sitting down…I’m exhausted, and you are exhausting. All day I go about my life and you throw in your little jabs trying to trip me up, sometimes you succeed but mostly you fail. You selfishly try to slow me down with all of your annoying neediness but you will fail again, each time more miserably than the last.
While you sneak around doing your worst, we (I’m not alone) openly defy you and together we will end you. You might think that you are slowly wreaking havoc on us but we are gathering strength and knowledge. We have technology and neuroscience on our side but more importantly we have heart; do what you will but our determination is unstoppable. Because of you and in spite of you, I have been introduced to an entire army and together we have the combined vision of the day when you no longer exist.
In closing, though the last few years have been interesting I think it’s become obvious that we’ve grown apart and it’s for the best that you leave; you just don’t get me like you used to.
On the same day I was diagnosed with MS my mother-in-law was being placed into a nursing home. My in-laws had a lot of other things to go through so I made the decision not to tell them.
In the weeks that followed I had to stop working altogether. This meant a loss of income, and my husband had to work more hours and we had to make many changes in how we did things. However I was able to take our planned summer road trip. It wasn’t easy and we did make changes along the way but I got through it and with good memories. About a month after we got back home my mother-in-law passed away. So we had another sad event to deal with.
Everyone went back to their normal routines except me. I had not yet told my parents or my grown kids about my MS and waited six months to do so. They all lived in different parts of the country and one in Canada. Due to my mom’s religious beliefs (not mine) she was the hardest one to tell. After I told her she told me not to ever again bring up the subject or use the MS word. She refused to deal with it so I never discussed my MS with my mother again. However, my dad was always very kind about it and asked how I was doing if she was not around.
Now everyone knew I had MS but back then nobody wanted to talk about it or gave out any comfort or help. I soon found myself very alone with this horrendous disease and had no support system at all. I was slowly sinking into a huge depression and thinking I didn’t want to live anymore. I started giving my things away. This was about two years into the diagnosis. Then one really bad day as I was about to give up, my beloved dog came in to see what I was doing, sat next to me and looked concerned. When I looked into her sweet face I just burst into tears and said to her “what in world am I doing?” I just sat there holding her and thought to myself…I am going to fight this with all I have even though it is incurable and I will always have it!
This was my first turning point. I didn’t know it back then, but there were so many more good turning points to come. Of note, you will see in my blogs that I think dogs are the coolest things on the face of the earth! After all dog spelled backward spells God and they certainly are a priceless gift to so many!
Next Blog: The Good I Learned from Having MS
I started a new routine today. I saw my occupational therapist this week and she suggested that I start stimming my forearms to help strengthen and stretch out my fingers. For the past year, I have been using stim exclusively on my quad muscles and have seen some great results. My leg muscles are not only stronger but I have less tone and can now exercise considerably longer than when I originally began. My stim unit looks like an iPhone and has become my new best friend. I am using the dual channel unit called Choice Stim made by Progenix. The unit was covered by my insurance and the company sends me supplies every month at no cost.
My plan is to use this every day for 30 minutes on each arm to see if I can strengthen my hand grip.
I will post my progress in future blogs.
Here's to fighting back!
I have lived with MS for 54 going on 55 years. I've used the wheelchair for 30 plus years. I take no medications for MS as at the time I was told that I had had MS for too long and no doctor was willing to prescribe anything. I have a close friend who has been at my side and she told me that I have a minor inconvenience (the wheelchair) and I don't have time to grow old (now 83)! We travel a lot and she has told me not to be so independent! I worry as I do lean on her too much, but we are planning another trip. Her secret, she keeps me positive. She is 1 day, 1 month, 1 year older than I.
I am going to break up my blogs into chapter like form until I get to the present. We all had a beginning and here is mine.
It started out as unusual fatigue, a worsening to summer heat and limping if I walked too much. Then it went to the little toes on my left foot feeling numb and a leg that was getting very uncomfortable feelings in it...kind of a numb prickly feeling running up the back of my leg. Over time I started to have tonic seizures that would make my whole body go numb and I would crumble to the floor.
For six years I kept going to one doctor after another and was told a lot of different things and not getting anywhere. Finally my boss said "I really think you should see someone for your back again," for she thought (like I did) that it was a pinched nerve or something. I did have back problems, so that seemed reasonable. I went to see my doctor and he ran some tests. He said, "Well, your back is worse, but that is not it." He then gave a slip to me to see a neurologist. I told him I thought that neurologists only dealt with mental patients and that I was sure I wasn't crazy. Then he explained to me what a neurologist was and what one could do for me.
So I went to this neurologist and my life changed. From the beginning I did not like this doctor. He was rude, ill mannered, impatient, very controlling, and showed no courtesy or respect. He did an extensive MS exam and then had me answer a ton of questions about my life. I must have been in his office for 2 hours. When he was done he handed me a paper to take up to the front desk, and on it was the name of six diseases that he wanted me tested for. I had heard of only one of them before and oddly that was MS. I told myself that wasn’t what it was at all and I didn’t worry.
About 6 weeks went by getting all the tests done and the results back to him. It was time for my second visit and in I went. When it was my turn, he came out to get me and said right away WHY didn’t you bring your husband with you? I told him no one said to do that! By now sheer terror was going thru me! In his office he started to go through the pile of results and saying a lot of medical things I knew nothing about or what he meant. Finally he told me that I had a demyelinating disease. I still had no clue what he was talking about and I told him so. He was getting irritated with me and I was upset. Finally it was I who had to drag it out of him...what did I have exactly? He then blurted out "You have MS, there is no cure and no real treatment at this time." I was stunned and in a minor state of shock. He then tossed a MS book at me and said go home and read this (but bring the book back) and at our next visit if you have any questions we will go over them. He was completely devoid of any comfort!
I left and got into my car and just sobbed. Next thing I knew I was home and had no recollection of how I got there but all seemed OK, meaning I didn’t hit anything on the way home. I went inside, sat down and looked over the book and just kept saying NO WAY NO WAY this is just not me. Finally my husband came home and I told him and he just said well, now you at least know what is wrong. He had to go to work and left me standing there in tears. Up till that time that was the worst day in my life. The MS journey had begun and what an interesting trip it has been, albeit the rough times too.
For all who read this keep in mind that was 23yrs ago and A LOT has changed for the better since then. I was 48 when I was diagnosed and am 71 now.
Next Blog will be about "After the Diagnosis"
I received a video a couple of weeks ago showing a wheelchair bound woman using a pair of robotic legs to walk.
Someone close to me sent me this video and in her mind she had just found a way for me to walk again. I know this person cares about me a lot but I wish her focus was on getting me better and not just getting me walking. My battle with MS is so much more than just the mobility challenges. My upper body strength and core weakness wouldn't make me a good candidate for this technology. I'm not upset because I can't use this technology. I'm frustrated because some of the people I'm close to don't understand what MS is and that it can affect so many things!
I have a deep appreciation for the way that technology has kept me independent for so long. I don't know what I would do without Dragon, my standing wheelchair, or my Bluetooth just to name a few. The future of technology seems limitless. I can't lie, it brings a smile to my face to see the woman in the video get out of her wheelchair, strap on robotic legs and walk. It's great that there is a segment of the wheelchair population that can benefit from this technology but what I really want is a cure to MS!
Today was day one for me timing my walks to the park and back. I used a GPS jogging app to help me keep track of the data. The GPS was pretty spot on as you can see my zigs and zags along the way! My first timed walk went pretty smoothly, there were no trips or real balance scares which was nice.
So here are the cold hard numbers, I went .31 miles in a blistering 8:06 putting me on pace to finish a mile in 26:01. This left me a little winded but not too badly, it was much easier not chasing a speedy 2 year old the whole way! It is my goal to walk this route at least 4 times a week with the end goal of jogging instead of walking. But for now I will set my first walking goal to shave off a few seconds and come in under 8 minutes. Shouldn’t be too tough right?
Be a warrior today,
Back to school means a ton of walking around for me, as a resource teacher I service kids all over my school. All summer I tried to walk as much as possible and I was a little worried that once I got back to work my activity level would dwindle…not the case. Not only am I constantly trucking around the school, which is carpeted I’m also in and out of rooms full of miniature furniture and miniature people, both severe tripping hazards!
My very thoughtful special ed team included a pedometer in my birthday gift because they know that I’m trying to keep it moving while at school. Over the first few days of school I’ve averaged about 1,400 steps which is just about ¾ of a mile according to a few different sites I have looked at. Pretty good considering it’s mostly all done while avoiding those pesky little chairs and trying not to snag the carpet and go flying through the fourth grade!
Little kids are very honest and like to ask me questions about why I “walk funny” or “what is that thing around your neck flashing?" (it is my electronic stimulus aid) or "are you a robot?” So I try to teach them a little bit about what’s going on with my MS. So far so good some kids get a horrified look on their face because they think it’s catchy or that my brain might fall out of my head but some of the kids have relatives with MS or other issues with their health.
Back to school also means I’m coming up on the anniversary of the virus that really kicked off this whole journey. While it was terrible that virus really changed my life for the better, since then I have improved my diet and my overall outlook on life with MS. I will continue down this path and continue my fight with the MonSter until I win.
Be a warrior today,
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.