Great Falls Walk MS

Yay! I had such a wonderful experience at the Great Falls Walk MS this last Saturday!!!

A total of $805 has been pledged under my name and I am just blown away about that! It makes me tear up thinking how many people are caring even in the troubled recession. I want to thank them all and let them know how much it means to me to have their support!

The Walk was a smaller one than in Billings, with a lot of MS patient's walking. MS is known as the "young people's disease" and there were people out there around my age, male and female, using canes and wheelchairs. It is sad to see that but also so wonderful seeing them participating and just being themselves. It did not worry me or scare me seeing them like that, in fact it made me feel stronger knowing that my heart goes out to them and understands so much of what they are going through.

I met and spoke with others in my shoes and in fact, met an incredible couple who I enjoyed visiting with a great deal. She uses a cane and straight cath's. She gave me wonderful tips if I end up down that path which I am currently already beginning, hence my two urology visits in the last couple of months. They have a child my daughter's age and it was just so nice hearing from them in what they deal with. They gave me their phone number and I so look forward to keeping in touch with them. They have just recently moved to Great Falls and haven't gotten around to meeting others yet but I am sure they will have no problem at all in creating a tight social circle soon.

My parents traveled to Great Falls and even helped raise money in my name for the Walk! I am just so blown away at how absolutely generous of heart my parents are. I know that this is not easy on them and I appreciate them more than words could ever say. My daughter and my mother ditched me quite a bit during the walk (laugh), as I was a bit slow going but that is okay as I hitched up with others going slow and visited with them. Even my neurologist was at the Walk!! That to me meant a lot seeing him out there.

I won a raffle basket... yay me!! I love goodies!

Overall it was just such an incredible time and I look forward to doing the Walks again next year. I was not even sore after this one. Okay.. well I was sore, but not as dreadfully so as the Billings Walk.

Processing - Grieving - Accepting

I still am in the phase of learning to accept but I can say that for the most part I am closer to it than at any other time. It has been a journey and the hardest thing I have ever had to do in my life.

When I first got the diagnosis that I have MS, it hit me like a ton of bricks. I was told to read up information and get to learn it. I went home and brought out some of my old college text books and when I came across the section that was written on MS, I noticed that there were no notes scribbled around the edges of the text and no highlighting at all! Which can only mean one thing... it was a section we skipped over completely. I'm a fanatic for scribble and highlight but there are sections of the book are bare and I know that is because we skipped over it. I read what the text book said and in 1996 there was still so very little known about MS as compared to now.

Processing all the information on the internet, in books, talking to strangers on the phone, etc was just too much to deal with. Especially being a single mom and lying in bed every night on your own and wishing so badly that you had someone there to just hold you.

Then the greiving process of realizing this is just too much for anyone to jump in on. Does that mean I have to come to the realization that I am going to always be single now? Why do my children have to suffer because of what mom is going through? Why financially do things have to be so extraordinarily tight that my children have to miss out on things that others are doing (for example my daughter will not be able to go on the Washington DC trip this summer with her classmates because we do not have the money and I did not have the energy or time to help her raise the money etc). I guess I am still partly in this stage as well.

Yes, I am aware there are so many others out there who have it worse, who are currently experiencing horrific turns in their lives, but I was told that I need to stop diminishing what is going on with myself.

Some say to just deal with it and move on your not dead, etc. It is amazing how many people will say things that are so hurtful yet they are only being well meaning. For the longest time I smiled and accepted what they said and now I just want to cringe and scream inside when I hear stories that "so and so, and then there is so and so who all have MS yet they are leading wonderful productive lives." Yay! Kudos for them!! Truly I do mean that, yet I am tired of hearing it. Does that make me evil? People are just telling me that to give me hope, but then part of me wonders if they are saying it to also tell me "why are you making such a big deal?" Who knows, perhaps my moods have struck again and I am overly sensitive.

Yes I am quite aware of the woman who has MS and went blind and in a wheelchair for a period of time. I am aware she made the choice to go off all medications and just try a vitamin supplement (which she now sells as it is something believed by others as healing for many health issues) and now she is able to walk, see, and participate in every day life like there is nothing wrong with her. Kudos! Yes, I have talked to her. Everyone who finds out that I have MS instantly says "You really need to talk to her." I say I have and they ask me curiously if I have considered buying her product to use. My answer is that I did consider it but then I chose to keep with my MS medications and my neurologist at this point in my life as I am still young. Yes, I know she was a nurse for 20 years and has a lot of knowledge but it was her choice. They look at me like it is my fault that I am having issues when I have my "hiccups as I call them", but you know it is my choice. I want to scream. How do you get people to just lay off and if they want to give advice to please research the topic first.

Phew - is that a rant?

I am an advocate for MS research. I will not stay quite. I want to raise awareness. I want people to realize that this is out there. Of course I knew MS existed because my son's best friend when he was in grade school has a mother with MS. I remember going over to their house for very brief visits and she was in her bedroom the majority of the time. I remember seeing the wheelchair in the living room that she used intermittently. I remember never seeing her at any of her children's school activities, at the store, etc. I remember her talking of her church parishoners coming to see her because she did not get out. I also remember her as being a very beautiful petite woman. They moved out of the area years ago and I wish with all my heart that I could locate her. I want to say I am so sorry. I am so very sorry. I feel like a horrid person. I never asked her. I never had her talk to me about what she was going through. I took a blind eye approach. I went over to talk to her about the boys and never strayed from that topic. I never asked her anything. I chose not to learn. I never gave her advice because I never showed an ounce of interest in what she was going through. SHAME ON ME! I would do anything to locate her and just give her a hug.

I smile as much as I can and do my absolute best to keep a positive attitude. Except those days that I am mood swinging.... (smiles)

Mood Swinging... weeeee

I have read that a Multiple Sclerosis patient experiences everything a normal person would feel at a greater intensity. So it makes me wonder if when I get on the mood swing set if I am in need to try to wrestle those feelings in a bit.

I vary from tear drops to just being growly and giving dirty looks. I try to force myself to smile at people who irritate me if I catch it in time. I feel very opinionated etc when I am in a growly mood. I do not always voice it but my daughter tells me that it is apparent. She tries to bring mom to earth when she starts to see it beginning and I am thankful for that because a lot of times, like right now, I feel moody but I am not aware of how I am coming across to others. Crying is another fun thing.

The other day I just started crying and could not stop thinking of my finances and how I have to rely on family to help. I could not stop crying and so, I went and scrubbed the toilet! Yep, my toilet sparkles and shines now and voila... it made the crying stop. My goal is now when I get on the mood swing set is to do an icky chore and maybe that will help me get a grip.

Health Companion

I saw my neurologist two days ago and I went prepared with my "Health Companion" that I received when I was in the Women To Women Study. It is a binder that I feel lucky to have gotten. It makes my life easier! There is a section that I fill out with all my medications, a section for symptoms experiencing currently, a section for my insurance info, questions that I have, past medical history section, past hospitalizations section, family history section, immunizations, past surgeries/procedures, laboratory results, and a lot of other sections that I would never had thought of putting together on my own. It is nice to bring it along to all physician visits so I do not have to stop and try to think of everything and perhaps miss something along the way. So many times I used to leave a physician's office feeling frustrated that I had forgotten to discuss something and this helps me out and I cannot say enough good about it. I also have added to the binder all documents regarding visits from any physicians/ER/lab results etc that I feel are pertinent to have handy when I travel in case I need to see a physician that has no knowledge of what I am going through in order to avoid repeat testing etc.

I wish I could leave the physician's office with the "answers" to what is happening to me and a way to fix them but I know that living with MS means a lot of quessing and hoping.

My recommendation to anyone out there who is reading this is to put together a binder with all the pertinent information you can think you might need in order to take with you. I currently am seeing a neurologist, a urologist, a physical therapist, and my general physician. As I am bouncing from one to the other, it is nice having the information at my fingertips. If you would like any tips on what other things to place in it or would like to share what you have put in yours, feel free to share in the comment section.

MS Walk 2009 Billings, MT

I went to the MS Walk yesterday in Billings. If there ever were something to look forward to after being diagnosed with multiple sclerosis (MS) this was it. I wanted to go and meet others face-to-face who are living with MS. I did meet very briefly in line at the rest stop two other women, but other than that everyone just stuck to their own teams in the walk. I do understand that, but was kind of bummed I was not able to socialize more. The Walk itself happened on a beautiful day after a week of horrid weather. The first rest stop was at 1.2 miles where my daughter and I decided that was it for me and after resting, we walked the 1.2 miles back. I so wanted to continue on but my legs were mad at me for having gone that far. We took a photo of the 1.2 mile sign for the scrapbook because my goal for next year is to beat that.

After the walk we decided that since we drove 125 miles to go here and there is a mall, we could not leave without shopping! After whining and complaining in the mall, we hit WalMart where I asked for an electric scooter. I was told by the guy at the door that the four sitting there were all out of order, so my daughter and I back tracked to the parking lot to leave. There was just no way I could continue on walking. It made me sad seeing her face and after she gave up a track meet to come with me. So, we drove near the second entrance where I hobbled in and asked the woman for one of the two electric scooters. She did not seem impressed with me at all but said yes. It was like HEAVEN! when I finally was able to sit. My daughter and I enjoyed a long trip and too much money spent in WalMart after I was able to use one. I was glad we were out of town so no one would see me, Wrong! I did run into a woman from our small town but she smiled at me. In fact, she was the only person in WalMart who smiled at me. I guess I got a quick look in to how people must feel like in wheelchairs. The disgusted sigh because you are coming around the corner in an aisle and they are coming the other direction and about plow into you. Not one person say a word to me. I guess I did not realize just how rare I am that I actually look eye to eye with someone in a wheelchair and smile, and if I by chance take a corner around an aisle to fast, I smile and say hello or oops you go first, etc. Oh well, all I cared about was sweet relief for my hips, legs and feet.... and the shock of my reciept!