Accessory Fundraising!

Moms with MS Bravelets

Every purchase raises $10 for the Moms with MS Community. Click the picture to see more Bracelets!

I was so happy when I found Bravelets! The first page to set up of course was for the Moms with MS Community. The bracelets or “bravelets” as they call them are really good looking and there are enough different styles to perk up a variety of styles. In the past I was excited about Shopfunder.com and I was bummed to recently realize that they weren’t around any longer, so I was grateful to see this replacement! I am hoping with their focused offerings they will have more success. Shopfunder had a very wide variety of products created by individual artisans which made it that much more important but I can imagine there was a lot more overhead too.

I’m glad to see that the world of crowd funding/buying/etc is opening up to everyone, it gives a lot more options to people that are looking for creative ways to get support!

Stay Brave!!

Post originally appeared on KristinBennett.com and has been republished here with permission.

I was diagnosed with MS in 1977

I was first diagnosed with MS in 1977 via a spinal tap. I am now 73 years young, am ambulatory and currently the only MS medication I am on is Baclafan. I have had Avanox (made me very sick so took me off) then was put on Copaxone. Did very well on it for years till the co-pay suddenly rose to oer $467 a month an I couldn’t afford it so my MS Neuro doc took me off it and everything else except the Baclafan. I am doing ok but the fatigue factor really gets to me. Then last March 4th my dear husband passed away suddenly of a heart attack. When that happened I was in the hospital with an intestional blockage. Since then life has been a horrible struggle. I have my house up for sale in hopes of moving to the Phoenix/Sun City area to be near my only daughter from Washington state. I’ll shut up cuz this is longer then I intended and don’t want to bore you.

Blessings,

Bobbi

Are You a Mom with MS With a Story to Tell?

MomsWithMSHello, my name is Kristin and I created the MomsWithMS.org community about 5 years ago. I felt like I both knew things that I wanted other moms to know, and also I had a LOT of questions that I wanted to ask other moms. The private online community has now been active for a long time, and I and over 1,000 other moms now do have a place that we can go to ask questions, but is the problem solved?

In my opinion No. As you and I both know, there are more and more people being diagnosed with MS every day, and a lot of those people getting diagnosed are either moms or potential moms to be. I know this because we are still getting new members every week who are recently diagnosed. This tells me that despite the blogs I see popping up by other moms with MS, and the support groups I’m seeing in other places there is still a need out there.

SO I want to offer to you, whether you have a blog or not, the opportunity to share whatever it is that you would like to share with the world. You can do this via the Share my Story link in the menu above this blog post.

You can choose to share your identity (or to stay anonymous) as you choose.

If you do have a blog, you are welcome to post an intro with a link that links to your post on your own site and/or include a link to your blog.

I hope you take this opportunity to share with the world the story that you hiding inside of you! Every story will be shared via both Facebook and Twitter where we reach a lot of people, if you are interested in specific numbers or have any questions for me please comment below and I will reply.

Hands Temporarily Out of Order

Hands Out of OrderFortunately at this point, I can type. I am writing this article just over a month from when symptoms started appearing from what can be called a flare, exacerbation, attack, or even just an episode of Multiple Sclerosis (MS). For a period of time I lost most feeling, control, and strength through a lot of my body. Most impacting for me in my life was experiencing this with my hands! I am often asked ‘what it feels like’ to have MS, and so this is the first in a series of articles covering the wide variety of symptoms that have recently come and gone through this most recent episode.

Currently I can type, which I consider my ‘coordination’ as well as ‘strength’. About two and a half weeks ago, this was not possible! I was barely able to communicate digitally, moving a mouse was near impossible and required the use of both of my hands! I think this is most clearly described as feeling like I was wearing multiple layers of rubber gloves, as well as weighted wrist bands, over a pound, probably about a pound and a half and trying to do anything quickly. Usually if one tried to do something like this, it would be difficult when first trying to do something like move a mouse, but then after a minute or two it would get easier. Normal feelings in my experience that fit this description are compensated for by the body making impairment temporary. However with this MS flare-up I experienced it was like that initial feeling of being out of control gradually hit, it took about a week for it to manifest to the worst symptoms, and then it has been slowing waning since. At the worst part I was able to ‘type’ ever so slowly using only the pointer finger on my left hand, being slowly and strategically placed over a key, lots of errors and absolutely painfully slow.

I started getting the coordination back before the strength and the feeling, at this point it was uneven as well. I My left hand improved much more quickly than my right (I’m right handed) for instance and while I could type pretty well with my left hand, my right kept ‘floating’ over to other keys, so my “L”‘s were often showing up as semi-colons and so for th because the drifting re-aligned where my hand was placed, imagine the kind of weakness you would feel after unpacking and organizing a huge bookshelf of books and then doing a couple pages of typing and I think you will understand what I’m describing a little bit. I had to watch my right hand to make sure that I had my fingers over the right keys, which was very distracting as I usually am a very fast typer!

Right now, about 4 weeks from the beginning of all of this, I’m almost completely better in my hands, I can sign my receipts, fill out forms, drive, type, change diapers, do dishes and so forth. I think right now is the most interesting as far as how they feel though. I describe it as feeling like I just got my hands wet, dipped them in some kind of flour or corn starch, squeezed them into fists making the substance cake in random places, and then putting some tight thin rubber gloves. So I can feel, but not fine details. Smooth surfaces feel bumpy and definitely not smooth, (this makes cleaning a little crazy because it doesn’t really feel clean). I’m hanging in there though, the hardest part is keeping myself from touching everything and observning how it feels as I watch and take note of what it looks like it should feel like.
In addition to all of this I experienced a symptom called “L’Hermittes,” “MS Hug,” and a kind of burning ring around my neck. MS is a very interesting condition to have.

This post was written by Kristin Bennett in February 2010 and is re-posted here with permission.