Doing something good = FAIL

As many of you know I have been hard, hard at work trying to raise funds for the NMSS. However, it seems that when dealing with any other circumstance than the MS Walk, itself it is very difficult to do without being your own non-profit. I was just told by PayPal, who I set up an account with to sell tickets to fundraising events for the NMSS, that they have limited my account and I will not be able to withdraw any money until I prove that I am working with the NMSS. I can’t even change my status to personal or business since my website says that I will be donating money to the NMSS. I must also open a special account for these funds to be withdrawn into, my bank accounts aren’t good enough. It doesn’t seem to matter that I have fronted money from my personal account, that the donate button on my site goes directly to the NMSS, or anything else for that matter. I know that there are crooks out there, but do you know how frustrating it is to be treated like one when you are not!

Thanks for listening to my rant! I was on the verge of tears when I started writing this and now I feel a “little” better.

By the way do any of you happen to know an attorney that would be willing to do some Pro Bono work to set up an official non-profit with 501(c)(3) status?

Next Steps needs a face lift! It’s a contest!

Hi everyone! If you’ve followed my blog at all you know that I created a team to walk in Walk MS:Columbia 2010 this year. This was our logo:Well the walk has now come and gone, we raised over $13,100 BTW, and I have now decided to take Next Steps beyond just a walk team. I would like to increase knowledge and awareness of Multiple Sclerosis, continue with year round fundraisers, and get MS and the color orange to be synonymous like pink and Breast Cancer are. To this end I have created a Facebook page , a twitter account Follow ns4nmss on Twitter, and a website www.nextsteps4ms.org . To help with the previously mentioned objectives I am also going to look to be starting a line of merchandise with the Next Steps logo on it.

Here is the problem. As you can see from the above logo it has nothing in it related to MS or that our objective is to find a cure. I however am not a very creative person and am having a problem coming up with a new logo. I’ve thought of Next Steps 4 MS is a cure, or a foot kicking MS out of here but that is the extent of it and I have no idea how to implement them with a design. On top of it all the design also has to work well on merchandise.  If this of any help I have been considering renaming the group/site/team etc. to Next Steps vs MS.  What do you think?

Now I need your help! I would like to make this into a contest. I will take submissions until June 20th and then will open voting until June 27th. All net profits we make from fundraisers and any upcoming sales of merchandise will be donated directly to the National Multiple Sclerosis Society so I don’t really have money to pay or give an extravagant prize. However, in exchange for the exclusive rights to the winning logo the winner will receive recognition of being the creator of the logo on our website and a copy of Courage by Richard Trubo or a $25 gift certificate to Amazon.com. Of course you could always donate the prize back to the NMSS as a donation.

I look forward to seeing all the creative logo ideas I know you’ll come up with. Please submit them to debbie@nextsteps4ms.org .

Beautiful weather? Maybe looking out from the inside.

Yesterday was Saturday, so full of possibilities.  It was one of the first Saturdays we didn’t have something to do and could just do whatever we wanted.  I woke, after another horrible night of sleep, full of ideas.  We could go for a walk, finding a good trail with one of the five (yes five) local area hiking books I recently purchased, and start building up my stamina to walk in the MS Challenge Walk next year.  The local community festival was going on along with a strawberry festival at the church right across the street.  We’ve lived here three years now and have yet to attend, so maybe it was time.  My best friend’s daughter was playing her last hockey game of the season and last home soccer game, and this would have been the only time we had seen her play and obviously the last time for a while.  Afterward we could go out with my friend and daughter who we hadn’t seen in some time.  Let’s not forget shopping!  We recently got a new king bed which must be properly outfitted and coordinated with the room color. Oh, so many options, so many fun choices!

After thinking for a bit I decided that we should really go to the local community festival as the kids would have fun there, go shopping, let the kids get a nap, go watch a soccer game, and then have some fun with my friend and her family.  The weather gave a high of 87 degrees for the day, but we were getting out in the morning and would be driving most of the way, and when we were outside later we would be sitting.  Beautiful day everyone was saying. Get out and enjoy it, and that was just our plan.

The festival was only about a half a mile away, but knowing the issues with heat a lot of people with MS have, and that I had been starting to feel like I was also now experiencing, we decided not to even chance it.  We drove down and parked, maybe, a 1/8 of a mile away.  I walked down ahead of the rest of my family to minimize my time in the sun and waited for them in the shade.

Once they joined me we started to wander around.  There were a few vendor booths, lots of church tables, almost as many political tables, some food, and a couple of things for kids.  Ed soon decided to separate from me to do something to entertain the kids while I made the circuit.  I got a few business cards for possible MS merchandise, got the backing of our local community association president for future MS events, and even learned a little about Honey Bees.  By the time I found Ed again it was looking like a storm was coming so we better hurry if he wanted to walk across to the strawberry festival too.

We started to head over there and halfway up the very short stretch of hill we had to walk I told Ed “I’m done. Something had just happened to my legs”.  Ed kept going, determined to get some strawberries, as I followed behind very unhappily.  The line to get into the church was out the door and I snapped that I wasn’t waiting in that line.  Ed then realized that he could get some outside.  I stood and waited, glaring at him the entire time, and didn’t speak to him on the way back to the car.  By the time we got to the car my legs were jello, I was tired, and really unhappy.  Luckily it was only a 1 minute ride home.  Shopping was no longer an option.

It turned out that Ed had never actually heard me say that “I was done. Something had just happened to my legs”.  He thought I was just worried about the possible rain.  This makes sense, as Ed never does anything to make me purposefully unhappy and really worries about me more than I ever worry about myself. All was forgiven, but unfortunately, that couldn’t fix the strength in my legs, my fatigue, or my day full of possibilities.

We let the kids watch their normal video before nap time, and got them down for a nap.  I talked to my friend and told her that there was no way we could make her daughter’s soccer game and we didn’t even know about getting together afterward anymore.  I then went and collapsed on our bed in as little clothing as possible to cool down and went to sleep.  When I woke up a couple of hours later my legs still felt like jello and I had no desire nor the determination needed to go anywhere.  We called my friend again and completely canceled.  Luckily she had the availability of alternate plans or I would have felt horrible on top of everything else.

On days like these, days where I feel beaten and down, I do have one thing that can almost always make me feel better, normal.  That thing is as simple as a game.  Really any game will do as long as it includes a friend or two and normal conversation.  A very good friend of ours came to my rescue last night, even though he didn’t really know it, and I went to bed me.  Me, not the tired, weakened, snappy person MS can turn me into, but ME!

From now on I will be enjoying any “beautiful weather” over 80 degrees from a fun indoor locale or in the shade with a cool drink, comfy seat, and good company with the slight possibility of quick easy activity to play a game of corn hole or two.  Seat, drink, and shade nearby, of course.

Dr. please know that of which you speak

NOTE: This post contains a lot of details that are spread out among other posts, but they are condensed here to make a point.

When I was first diagnosed with MS about 12 years ago, I was only 25 years old.  Besides being incredibly shocked and scared, one of my first thoughts was that this might mean that I might no longer be able to have children.  I was being seen by a highly respected neurologist at Johns Hopkins.  When I asked him about having children he told me that there was no reason that it should ever be a problem for me.  Not only was there no real proven genetic connection, as children with a parent having MS only seemed to have less than a 1% greater chance of developing MS than the general population, but the mother seemed to be safe from exacerbations during pregnancy, though there was a higher chance of an exacerbation during the first 6 months after delivery.  The only thing he cautioned me about was to stop taking any DMD (disease modifying drugs) that I might be on prior to trying to get pregnant.  As you can imagine, I was quite relieved to hear that information.

When I was dating Ed and I told him that I had Multiple Sclerosis, I felt very secure in telling him that it would have no effect on our moral or physical desire to have children.   We were married a little under a year later.  I had stopped taking my Avonex a few weeks prior to the wedding on the advice of my neurologist, just in case.  Low and behold I was pregnant with G. less than two weeks after we got married.  I believe I had as typical a pregnancy as one can have, if there actually is a typical pregnancy.  I continued to work at my job as a paramedic on a busy medic unit until I was 33 wks pregnant, and then I went into an office.  I emailed my neurologist towards the end of the pregnancy and he had no concerns.  he just said that he did not advise going back on Avonex while breastfeeding and neither did the drug company.

Approximately eight months later, while still breastfeeding G., I became pregnant with E.  As soon as my body realized that I was pregnant I started to go into a severe exacerbation.  I went from working on the medic unit to almost paralyzed in 8 weeks.  Not only was I having an exacerbation while pregnant, but it was the worst one I had ever had as all my previous attacks were strictly sensory in nature.  When I called my neurologist, I was told that they would not treat me because I was pregnant.  At around 8 weeks pregnant I was blessed to get in to see a Maternal Fetal Medicine Dr., basically just a high risk pregnancy OB, who said that I could be treated and called my neurologist to tell him to start treating me.  I received one round of high dose Solu-Medrol at home which helped my legs slightly but made my arms get worse.  When I finally started losing use of my left arm, I went into the ER.  They admitted me to run extra tests because pregnant women just didn’t have MS attacks.  After nothing else could be found they finally had to admit that it must be the MS.  I required multiple additional steroid treatments during the course of my pregnancy and eventually delivered a healthy baby girl by c-section.

There are so many things wrong with the above scenario that I hardly know where to begin.  First, no doctor should ever guarantee an exacerbation-free pregnancy instead of just a high possibility of one.  When that guarantee did not hold true, refusing to find out how to treat your patient is unacceptable.  My neurologist worked at a large multi-specialty medical facility that also included high risk pregnancy, but he could not pick up a phone and place a consult.  Even after all other tests proved negative, he was still basically unwilling to admit that what was happening was actually happening, and then he defended his decision to turn his back to a patient instead of doing a little research.

At this point you are probably asking yourself why I am rehashing all of this, especially if you have been following my blog from the beginning.  Well yesterday I went to a lunch, sponsored by a drug company that had a neurologist come and speak about the basics of MS and possible therapies.  During his talk somehow the topic of pregnancy came up.  The neurologist stood up in front of that room full of people and told everyone that all women were protected from exacerbations while pregnant. We all know that nothing dealing with MS is a certainty, and the promise of an attack-free pregnancy is just as uncertain as anything else.  If there happens to be a neurologist out there reading this, please think about it the next time a woman asks you about getting pregnant, and if there is a woman reading this thinking about getting pregnant, please know that no matter how many neurologists tell you there is no concern and how many books you read that back them up, that it is just a high probability and not a fact.

Mommy’s nap time too

Every morning I get up early with Ed, after tossing and turning most of the night, and try to sneak out to the couch so I don’t wake E. in the hope that she will sleep longer.  I fall back asleep on the couch until I hear either G. or E. calling for me.  I get up, get them what they need and then contemplate the day ahead of us.  Sometimes the very thought of the next eight to nine hours until Ed will get home just makes me want to cry.  It’s not because my children are incredibly difficult, though let’s be honest they are one and a half and almost three.  It’s not because I can’t stand being away from Ed for that long. It’s also not because I have so much to do that I hardly know where to begin and can’t imagine getting it done.  It is the simple fact that I do not feel like I have enough energy to anything other than sit here on this very couch.  That means no errands accomplished, no playgroups attended, no housework done, no anything except praying that I can make it until the kids nap time and then that becomes mommy’s nap time too.

Not all days are so bad.  There are days when we do go to playgroups, or the library, or just play by ourselves. There are days when I am extremely productive on the computer, working on my blog and new website (Next Steps 4 MS); I’ll go to a meeting about a fundraiser or to a self-help group. Some days I’m even excited about going shopping or walking around a lake with a friend.  I even occasionally go out with friends and attend my cooking club once a month.  I don’t want to forget about the nights we have people over to play games, which are often the only salvation for my sanity.  The day of the MS Walk:Columbia 2010 should not be overlooked either.  I was able to stay up from 6:30am to almost midnight, during which I walked a 5K and entertained people afterward.  About now I bet you’re thinking to yourself, “That doesn’t sound so bad. What’s she complaining about?”

You might be right too.  I probably shouldn’t be complaining.  There are many people with MS who live with far worse daily fatigue than I even want to ever have to think about.  The plain truth though is that most people with MS live with some level of fatigue not experienced or imagined by the normal, healthy person.  Those “not so bad days” I mentioned in the previous paragraph almost always come at a price.  Sometimes this just means having to cut the activity short or miss the next activity and take a nap.  There are very few days now where at least some amount of napping is not required.  Other times it is complete and utter exhaustion literally to the point of collapse.  I’ve actually had Ed scared a few times.  Now those times are probably my own fault.  I know that I now have limits to how much I can do, but I still manage to push myself far beyond on occasion.  It’s my obsessive/compulsive personality that forces mind over matter until the mind acknowledges that the event it was driving has ended and then it’s all over.

Mommy’s nap time has recently taken a more personal toll too.  My oldest daughter K. recently accused me of doing nothing worthwhile and basically just sitting at the computer all day and making everyone else do the work.  This is actually the watered down version of what went on.  It’s been a long time since I have cried so hard or been so depressed.  To think that any child of mine, especially the one who saw the severe exacerbation while I was pregnant with E. and the milder one in CA. last summer, would ever think that of me is heartbreaking.  Until a little under two and a half years ago, I was a full time paramedic and full time mother using my complete body and mind.  I no longer have that ability and, as much as it has taken a toll on those around me, I guarantee that I feel much worse about my loss of activity than they do, but since I’ve recovered at least 90% physically, all other symptoms are invisible to others.  They no longer understand that I still AM sick and am not able to do what I once could.  I’m scared now about my relationships with my children and what they do and will think of me.  Will they be able to understand?  I guess only time will tell.