Into the second year of our group Mr. T and I decided we needed a bit more help. After all, we still had our MS to deal with. There was a lady there who started from the beginning of our group and she had always been a lot of help and she seemed to want to be on our team so we asked her to join and she accepted. At the start of each New Year we had a meeting with just the three of us to discuss our plans for that year.
But by the 6th year a lot had changed Mr. T’s MS was getting bad enough that he pretty much just wanted to sit at the group meetings and just be a member. So Mrs. M as I will call her largely took over his spot, and the group understood all this. I however was not thrilled at how things were going, let’s just say our personalities just did not mesh!
At our private 6yr meeting I just could not come to terms on how the two of them wanted the next year to go at all. I told them how I felt and that I was stepping down and leaving the group. They were a bit taken back and then I gathered up my things and left, there simply was no more to discuss. I never heard from or saw either one again. Just like leaving a regular job, when enough is enough. Oh the years were good just not at the end. I had made two special friends at the group but they had already left the group due to Mrs. M. However we did stay in touch.
Well that phase was done and so was all my volunteering with the MS Society. By now though we had been thinking of moving away to be much closer to my husband’s work. Not an easy decision since we loved the town and had lived there 18yrs. But the horrendously long commutes for my husband had been brutal!
Never thought I would get thru all one has to do to move after all that time and then start all over at a new place. My MS sure did not appreciate all this as my symptoms were all over the place! The up side of all this was an easy commute for my husband and we now lived in a lovely brand new huge gated complex. It was for people 55 an older, there were no stairs anywhere or curbs to worry over. It had everything we wanted and didn’t want.
So we settled into daily living. In the last few months of my support group a visiting MS group leader suggested we all write how we feel about our MS and read it at the next meeting. This didn’t sit well with the group and the following month only 6 people had written anything to share, I was one of them. That same group leader came to this meeting also. Each read what they wrote and then we discussed it.
After the meeting was over and everyone was leaving this man came up to me and said there was a new Online MS Magazine that he had just started to write for and I should submit what I just wrote, for he liked it and knew the editor would love it. I about fell over and said I am not a ‘writer.’ I couldn’t do that! He said think about it and gave me the web address.
Well a couple of months later I sent the magazine what I had written. The editor loved it. She had MSand was a school teacher until MS forced her to retire. In the nine years that I wrote for it I learned SO much and made some amazing friends.
So now I had that to do at our new place and was getting a lot better learning all about computers. We have now lived here about 14 yrs. and in that time both my parents passed away and that was so upsetting and sad. My husband retired 8 yrs. ago and that came with a negative shock I never saw coming that totally blindsided me and shook me to the bottom of my heart. They say to keep stress at bay when you have MS, but gosh I am still working on that one. Stress is BAD for us I can sure attest to that!
As you can see a lot of doors either closed, opened or remain ajar. In other words, life goes on in spite of MS but it does at times teach you how to deal with other problems and that is a good thing.
Well this is my generalized journey to date. My next blogs will be about specific MS things and my thoughts about them from what I have learned. For everyone with MS their journey is unique and special and to be cared about.
Next Blog: MS and Medications
Sunday was a beautiful fall day so I decided to take a timed walk to the park and back and see if my time has improved since my last walk? It did, I made it to the park and back in 7 minutes and 22 seconds. I’m a little disappointed as I have been trucking around a bunch at school and thought it would be a breeze? Nope...I was huffing a little when I got back to the porch and definitely needed a rest.
My new goal will be to beat 7 minutes, which doesn’t sound like much but I was really trucking today!
Be A Warrior Today,
About a year ago I had just started on the long journey to recovering from the virus that nearly knocked me out. I’m happy to say that since then things have being going much better for me, I have shed 1 powered scooter, an AFO, a KAFO, a cane, 50 pounds, and an unhealthy lifestyle that was taking me in the wrong direction.
Meals were made up of mostly processed foods from cans and boxes and usually consisted of noodles with cheese and some bread, whatever was quick and easy. These days each meal is freshly made and includes great locally grown veggies as well as locally raised beef, pork and chicken. Sometimes I wish I could just microwave some nuggets and eat but really with a little planning eating healthy isn’t too tough at all, not to mention when dinner is served it is delicious!
It’s hard to believe that it has only been a year since that terrible time in my life. It seems as if it happened years ago or in a different life even? As I look back on being sick of course I’m happy that it has passed and that I’m doing so much better but I’m thankful for the change in direction it gave me. Along the way I have met many great people because of my MS including doctors, therapists, yogis and many other Msers and together we’ve put up quite a fight!
This school year I am trying my hardest to avoid getting sick, so far I have fought off a nasty cold using just my Vitamix and persistence. Hopefully I can keep healthy which is not a simple task when you’re surrounded by 500 smiling, sneezing elementary school students!
Be a warrior today,
So, the first thing we had to do was go into the big city where the MS Society was located and meet the president. She approved of us and went on to explain all about the Society and the help they would provide to us to start a support group. When we left we had folders of information and lots of things to do. Mr. T had gotten a new job so we split up what we needed to do.
First up…find a place to have our meetings. This was easier said than done. It needed to be large enough to accommodate scooters, wheelchairs and walkers, be in a safe area, have access to bathrooms, and be close to parking. After some looking we lucked out and found a perfect place; it was our own town’s hospital.
We signed up for the room and got the night and time we wanted and were given a key to it. Mr. T called the MS Society to let them where and when the meeting was so they could add it to their monthly newsletters. We were excited!
Our first few meetings were tiny, but the word spread and we grew. Our goal was to keep the meetings positive, personal and helpful. It helped that Mr. T had a great sense of humor and was always in control. I was the greeter and good with one on one talks and kept track of the details of our members and a bunch of other things.
Over the next 6yrs we had a variety of speakers and planned topics the group wanted to know more about. We had a yearly annual picnic, we did our part with the yearly MS Walk, and we went to seminars, classes and other MS events. We also volunteered at the MS Society to help with various things. We even went down to the state capital to lobby on a certain bill we wanted passed. Guess what, sometimes you can fight city hall and win.
Along the way (surprisingly to us), we gathered awards and plaques. What that told me was that we had succeeded in helping and that is all either one of us wanted to do. However, I still feel like I learned far more on how to live with MS and life, for it taught me so much about me. I learned how to control my shyness and stand up for myself and others.
In the years with the group I met all sorts of people in all walks of life and about how they handled MS. A lot of it was pretty positive and some really negative and some very sad. But as a group we came together and learned from it and that was a good thing. We were going through doors together with more to come. The biggest thing I learned is that MS is just one of many diseases that are hard to live with and can change your life and you need a certain amount of support to go on with your life no matter what the problems are.
I am NOT an MS’er, I detest that terminology! I am simply a person who has an illness called MS but it’s not who I am inside. I do not let MS define who I am. I did do that in the beginning but I am an individual person not a label! Looking at all the people in my group all I ever saw were people’s abilities and their own unique personalities. It is important to stay true to yourself however best you can. Having MS and being a co-leader of a support group taught me about another side of life and I am grateful for that.
Next time: A big change of direction, a door closed and another opened door.
First off I want to say I will not use anyone’s real name or name specific places due to respect of privacy. Oh I know I am on the Internet but you know what I mean.
So now I will continue my story (I have written previous blogs telling the beginning of this story so if you like you can go back and read those so you have the background on this story). Several months went by and the three of us went to all the meetings and always sat together. But the meetings for us were not all we wanted for the group was just too big and the leader was just overwhelmed with all he had to do and he didn’t want any help.
Twice we had meetings that had guest speakers and they were great! One was all about the first MS drug to hit the market and that influenced my ideas about that for good. The next time we had a very sought after speaker who was the best (at that time) and he was an MS doctor. The attendance to that filled this little school’s gymnasium to over flowing. This too changed me and both these meetings will get their own chapters later.
But now to go on. I was now driving again and always took Miss Y (as I will call her) and after the meetings Mr. T (as I will call the Tall Man) always walked us out to my car. He said I want to talk to you about a big idea I have and can we meet at his favorite coffee shop that weekend for a long chat? I said sure as he only lived about 2 miles from me. I had no idea as to what was coming at all!!!
He was already at the coffee shop when I arrived. He could hardly wait to tell me his idea so he started right in. He wanted to start his own support group in our town and had already been in touch with the MS Society as to how go about it exactly which did entail a lot. But the whole thing hinged on that he could not do this alone and he wanted me to be his co-leader. I about fell on the floor for being shy and no experience in this, what could I possibly do? Remember his background was as a CEO and I knew he could do it but me no way!
He then went on as to why he needed me and what my abilities were the way he saw them, he thought we would make a good team. I was taken back to say the least and said BUT I don’t talk in front of a lot of people I just can’t do that part. He said he would do most of that anyway and he did love to stand and talk to groups of people. Also he said I could just sit in a chair up front with him and not say much. I still was not sold.
Then Mr. T pointed out all I would be doing in sharing the leadership of a support group. I knew this would be too much for him alone given the way MS was affecting him and more women than men get MS, so this would give the group a balance. He stressed again how much the MS Society would help us. Mr. T also felt strongly that we each needed to take this journey to help others and ourselves. Here I was looking at Mr. Big CEO asking me Miss Shy One to take a big leap with him.
So I sat a bit drinking tea and eating a croissant and thinking about all he said. Then I said OK I will do it but I swear you could make a freezing man sit on an iceberg and make him feel it was good for him! He laughed and said great and let’s get started on our work.
As we all know MS can close a lot of doors but Mr. T and I just started down to open a new door and go down another uncharted path, with more opened doors awaiting us.
Next time, my 6 years of being a Co-Leader and an MS Society volunteer and how that enriched my life.
So the woman I told you about in my last blog came to pick me up and I went to the meeting with her to learn about MS. Once I got there I found myself standing alone and didn’t even see the lady who brought me. A few minutes later the group leader announced that it was time to go into the big conference room, so I just followed the crowd and sat down. As I looked around I noticed how we looked like a group ready to watch a movie…I felt kind of odd to say the least. Then I felt a tap on my shoulder and I turned around to see this nice looking young woman say “It’s ok, really!“ so I just smiled and said thank you.
The leader went to the front and read the minutes from the last meeting, addressed new topics we might be interested in, and thanked any new people who came. He then started to talk about the topic of the evening and asked for any questions or comments. After that we broke into about 5 smaller groups of around 8 people or so to talk about the topic of the night, greet any new members and/or talk about anything else MS related. As it happened we had 2 new members, myself and one very tall distinguished looking man.
Well right off they wanted me talk about myself some and shy me made fast work of that. The young woman that was in this group just patted my knee and said, “You did fine!” Then this man stood up and talked the rest of our time. He was a CEO of a big company, was married with a family and had goals to conquer. But he had lost it all due to MS and he was devastated. He then passed around pictures of his kids; we all felt so sad for him. He was very intelligent and had a way about him that commanded attention. He also had quite a sense of humor and he loved talking in front of people.
After the meeting this young woman came up to me and said “You look like someone I would like to be with friends with.” Then she gave me a piece of paper with her phone number and name and said to call her. I thanked her and she said “Please do…call like tomorrow?” and I assured her I would.
So I called her the next day and we both were surprised that she lived just half a block away from me…what were the odds of that? We talked for some time on the phone and found we had much in common despite our age difference and having MS. She was very mature for her age. She lived at home, and didn’t drive or work due to having MS.
What transpired for the next 10 years was a lovely friendship and we did lots of things together that were not MS related at all…and that included her getting married. Marriage was something she thought MS had taken away but it didn’t. She did move away after that and eventually we lost contact with each other. I know she went thru some heart aches BUT she got a taste of life’s up’s and downs just like anyone without MS gets anyway. We both learned a lot from each other, which was another good thing that came out of having MS.
Next Blog: The impact that tall distinguished man had on my life and MS and the doors that opened! HINT my shyness had to take a vacation because I was asked to journey down another path that I never saw coming…MS can be surprising in good ways.
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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.