July 14, 2010 at 2:58 pm (Uncategorized)
Just a quick post to share a picture of a sculpture done by Cathy Aten, an artist with MS. When I saw this it just seemed to call to me and I wanted to pass along it along to you. What do you think?
Heat by Cathy Aten
Please visit Cathy Aten’s blog for more pictures and her thoughts on living with MS.
July 14, 2010 at 2:32 am (29 Gifts, Family, Pregnancy, Present, Relapse, Symptoms)
When Ed and I first met about 5 years ago now he was very into volleyball. If fact sometimes he played three times a week. That continued for a while during the time that we were dating, often with me accompanying him. I can’t really say that I am much of a volleyball girl. Actually I’m not much of a sports girl at all. Though I did play volleyball and basketball in middle school that didn’t last long. Can you believe that I didn’t watch one game of the World Cup? In fact if it wasn’t for Facebook and Twitter I wouldn’t have even known it was going on. I used to like football, that was one of the things my Dad and I could do together. As it turned out I became quite a Denver Broncos fan but that ended when Elway retired. The only sport that I can truly say I enjoy going to know is minor league baseball. It is so family oriented and relaxing that I don’t even mind that there is a ballgame going on in front of me.
Once we got married he was down to playing twice a week. The only problem was that the Sunday game often took up the entire Sunday and that was cutting our family time in half. After G. was born Ed agreed that the Sunday game was just too much. He continued to play every Tuesday though with my complete support. I knew that I had things, like my cooking club, that I would hate if he made me give up and volleyball was his thing. He had been playing on this team for at least 5 years and some of the guys he even knew from college. I had sworn that I would never ask him to give it up. Then I became pregnant with E. and MS reared it’s head in a most heinous way.
I started to lose sensation and have mobility issues the moment my body realized that I was pregnant. Each day it would get a little worse till I was about five weeks pregnant and I couldn’t even carry G. anymore for the fear of dropping him. K., my older daughter, and I worked together for the next three or four weeks to take care of G. on Tuesday evenings while Ed went to volleyball. I couldn’t be alone with G. but I hated telling Ed he couldn’t go. Finally there was no other choice, as I continued to deteriorate, and I told him he could no longer go on Tuesday nights, that I needed him at home. That was over two years ago now.
Once I got some treatment and started to improve he still wasn’t able to return. At that point I was at least in my second trimester, probably only at about 60% functionality, and had a toddler to deal with also. He continued to stay home through my entire pregnancy. Once E. was born there were the issues of me recovering and taking care of two very needy little ones. He continued to stay home. Many times in the last year, once I felt I was as close to 100% as I was probably ever going to get, I told him that he should go back to volleyball. He did make it a couple of times, but most times either he or I would decide that it really wasn’t a good night for him to leave me alone. Some days I was just too depressed, others I was exhausted, and still others I was just sick.
The last time he did go he hurt his knee. This time at least he was the cause of his not going, not I. I won’t lie, though, and tell you that I wasn’t a bit happy and relieved but this circumstance. At the same time I still felt guilty. Through all of my illness and pregnancy I think I only missed my cooking club two or three times. Granted that my club often came to me or I would get a ride with someone and Ed was healthy enough to take care of both kids, it still didn’t always seem fair.
Once I realized that today was going to be one of my good days I knew exactly what my gift was going to be. Ed was going to volleyball with my best wishes. No guilt, no I “think” I’ll be OK, no “as long as you come straight home after the game”, nothing except “Have fun, I hope you win, and go out with the guys afterward if you want.” I will say that G. and E. weren’t as happy to see Daddy go but even G. was able to say “Have fun and I hope you win” with a big hug as Ed left.
As I sit here writing this I know that their game has been over for a little more than twenty minutes and they are probably playing with however they could recruit until they get kicked out by the management. I’m also assuming that he will probably go out with the guys and I hope he does if that is what will make him happy. However I know he won’t go without at least wondering how I did tonight and if he really shouldn’t just go home. How did I get so lucky? Hopefully this can become a regular Tuesday gift tradition!
p.s. As I am proofing this Ed called to check in on me. They lost 2 and won 1 but he is happy because they played well. I’m happy because he is happy.
July 13, 2010 at 2:36 am (29 Gifts, Present)
Tags: friendship
Hmmm….this 29 Gifts in 29 Days thing is not as easy as I thought it was going to be. I wonder why that is. I think one of the hardest things is that I don’t get out much these days so opportunities don’t as readily present themselves to me. The funny thing is that I absolutely LOVE giving to others. In fact sometimes to the point where Ed often just gives up, shakes his head, and says “Do whatever makes you happy.”. It’s possible that another part of the problem is that the things that I would normally give in a day I don’t think count. They are things that I just naturally do. They are not necessarily “mindful”. So once again the evening has come and I find myself tired and in my bedroom not yet having given a gift and despairing for the third time in a row that I might have to start over.
Then I notice something that a friend has done that really hurts me. It’s not the individual act that is so hurtful but that it is a symbol of many things that have come together cumulatively to really make me feel sad, and taken for granted. I must tell you that lately I’ve been really upset over my lack of local friends. I know that is simply a byproduct of us only having one car so I can’t make it to playgroups and other outings, and when that isn’t the issue, then there is the heat I have to contend with, taking care of two toddlers at once, my often overwhelming fatigue, and the fact that I live a ways away from the friends that I do have that like to do things and I don’t feel that it is always fair to leave Ed home with the babies. I’ve also had one friend move in the last couple of months. They didn’t move far away but we haven’t seen them since before the move. Even though I know that she has a lot of things going on right now and a lot of stress, I admit to feeling forgotten about. The thing that the first friend did got me thinking about friends in general and the friend that recently moved. I all of a sudden knew I had my gift!
It was time to forget about myself. My friend who had moved had not done anything to purposely hurt me. In fact she was the friendwho was around a couple of years ago when I really needed someone. I almost became paralyzed from MS when pregnant with my youngest daughter and she came to see me every week and often offered to help with other things. I know a lot of the causes of the stress that is currently effecting her and yet here I sat feeling sorry for myself because we hadn’t seen each other in a while and basically blaming her for that. No more. Her son’s birthday is this Sunday and even though there has not been a B-Day party invite, to tell the truth I don’t know if there is even going to be a party, her son was a great friend to G. and we still care and think about him a lot. We had not gotten him a present but tonight that changed. I had a lot of fun going through his wish list and choosing things I hoped he would love. I might not get to see him open them but they are gifts of love and love doesn’t require such niceties to continue. At the same time I realized that I had neglected to get them a housewarming gift, something I think she would never fail to do. To tell the truth it’s not something I usually do, but tonight it felt perfect. I hope she loves it.
It really is good to stop dwelling on my own problems for a little and to let go of perceived slights. I wish them the best! Now I am wondering what will be my gift tomorrow. I like that many of them have surprised me. If they were things that I would do normally, without mindfulness, I don’t believe that they would have caused such joy in my heart when they were given.
July 12, 2010 at 2:33 am (29 Gifts, Identity, Present)
I must say that today was much better than yesterday. I didn’t wake up with much more energy than the day before, in fact I almost overslept, but my mind has a way of over-riding my body when something needs to be done. We got out of bed at 8:50AM with my cooking club members due to arrive in an hour. No problem you might say, except the kitchen and bathroom still needed to be cleaned, trash and recycling taken out, and various other details that were asking to be taken care of. After about a half hour of running around I was already done and told my poor husband the rest was all his as I went to lay down in a very cool room and wait for everyone to arrive.
When they started to arrive all I can say is that happiness took over and I felt good to go. It really makes me think more about the often alluded to mind/body connection. These seven women and one man are truly some of the nicest and most interesting people I know. We meet once a month and for the past 5-6 years I can honestly say that cooking club, some of the people have come and gone, is one of the greatest joys in my life! Today was no exception. We had wonderful food and great conversation. However, all too soon, most were off to other activities for the day. A few stayed and we played a game or two and had awesome girl talk. That too, though, came to an end.
As I looked back over the day I saw a beautiful experience but I couldn’t see any gift I had given. Ed started asking about dinner and then it came to me. This was my opportunity! Lately I always make Ed go to the store and do the shopping. Today I would go and not only would I go but I would invite the young lady who lives with us downstairs to go with me and let her drive the car. You should have seen her happiness! She is still learning and has no car of her own to practice in. I also invited her to join us for dinner as her boyfriend had gone out for the evening and she was alone with the baby. We went to the store, she only scared me a couple of times, had a good talk, and then when we got back home Ed and I showed her how to cook the food. Once again she was very excited. She seems to really want to learn to cook and eat more healthily.
To top the night off I asked G., my 3-year-old, if he wanted to play a game. You might not think this is much but I almost always refuse when he asks to play a game. I don’t have the patience needed when he won’t wait for his turn or doesn’t follow the rules. I know he is only 3 but it is still really trying to me. Then you add E., who is 19m, to the mix and I am almost ready to scream. Tonight I did it because I knew how happy it would make him. It was completely worth it!
July 11, 2010 at 3:31 am (29 Gifts)
Tags: 29 gifts, fatigue, present
Yesterday I was so excited to start my 29 Gifts program. I was committed and determined. Today I couldn’t wake up. I slept until 11am and then no matter what I did I could not get rid of the fog that was swirling around in my head. Usually I have a glass of Diet Coke with Lime and the fog slowly lifts. This morning the fog just kept hanging on. I laid in bed for a while watching Bewitched on Hulu and hoping to feel more like joining the world. My mind was just not having any of it. I was even missing the first coolish day we’ve had around here in weeks. Rainy, winding, overcast, sounds like heaven to me right now. The few times I was up and in the kitchen I kept opening the door and relishing in it. Unfortunately my, almost 3-year-old, son was not of the same opinion and kept closing it on me.
Eventually I just gave myself permission to lay in bed and not go anywhere or do much of anything. The only thing about this plan was that I didn’t feel like I was going to be able to give my gift today. I was too tired to do anything around the house for anyone and we weren’t going to be going out now so I didn’t really see a way around it. I would have to start again on Sunday. This was not how I had wanted to do this but I had come to decision that this is just what it had to be.
Then something came to me. As a blog writer I always look forward to the few comments I get. I also must admit that I am very bad at commenting on others’ blog posts. I’m not really sure why that is but it is one of my short comings. So today I decided that for my gift I would comment on every blog post that had been posted on twitter from the Carnival of MS Bloggers in the last 24 hours and then I would go through all the blogs that I had linked on my blog and comment on everyone’s last post. I hoped it would make them all feel as happy as I am when I see a new comment. As of now I already know of one who it effected.
This wasn’t a physical gift or a financial gift but it was a gift of my time and hopefully a gift of happiness to those I wrote to. I believe these gifts to be just as important as tangible gifts, sometimes even more so.
Now it’s time for me to try to figure out how to go to sleep tonight. How ironic, I can’t wake up during the day and then can’t get to sleep at night. Tomorrow at least I have a wonderful incentive to get up and shake the cobwebs loose. Cooking club starts here at 10am! I can’t wait!
July 10, 2010 at 12:47 am (Uncategorized)
I know that I have been MIA for a little over a month now. It’s not that I haven’t been thinking about my beloved blog, in fact I started 3 different posts, but the energy and determination needed to finish each of those posts has been missing. Now that I am back I could tell you about our A/C dying, some family issues, a continued problem we are dealing with from an MS fundraiser, the legal troubles of a friend that I’ve gotten myself involved in, the neurologist who won’t pay close enough attention, medication mix-ups, and the list goes on. Today (no promises about tomorrow 🙂 ), however, that is exactly what I am NOT going to do.
Today I’m going to tell you about a book/project I came across on Facebook a little while ago. The book is called 29 Gifts . It was written by a woman named Cami Walker. The first thing that caught my attention about this book was the fact that the author had been diagnosed with MS when she was 33 years old. You probably would not have had to tell me anything else about the book and I would have still wanted to read it. I really enjoy memoirs and the fact that the author had things in common with me was more than enough. The fact that it was about giving, accepting, and living joyously was icing on the cake.
I won’t lie and say that the book was the best piece of non-fiction I’ve ever read but neither was it poorly written. I found the subject matter fascinating and felt an immediate calling. It sounded like it could be just the prescription I needed as it was for the author. The book talked about a prescription the author was given by a friend, who was also an African Medicine Woman, to give away 29 gifts in 29 days. The only requirement of the gift was that it be “authentic and mindful” and that if you missed a day you should start over. The purpose of this prescription was to stop thinking about and focusing on yourself.
This has been weighing heavily on me ever since I read the book. I’ve thought about starting the project so many times I can’t even remember. I’d often think “that could have been my gift for the day”. In fact I’ve said that, and talked about it, so frequently that my husband is getting tired of hearing about the possibility and told me to “just start”.
So, you may be asking, why haven’t I? Honestly, I’m the biggest procrastinator you’ve probably ever met, and because of fear. Fear that I wouldn’t have a gift to give every day, that I would forget, that I wouldn’t always be doing it with the mindful joyousness with which it is intended. Today I no longer cared about my reasons for not starting but only for the reasons I have wanted to start. Today will be my first gift.
My first gift is something I’ve wanted to do now for a while, especially as I know I have no other practical way to help. I donated $170.00 to the National Wildlife Federation for their work in helping with the BP oil spill in the gulf. It may seem like an odd number but it is the same amount we just wasted in having an old, bad for the environment, A/C unit looked at. It seemed appropriate.
As it turns out today I gave two gifts. The second was an apology/explanation to my husband regarding my poor response to his dinner problems. This is something I would not normally have done. I often just clam up and stay upset. Now I am no longer upset and he no longer feels attacked or ignored.
I believe that first day can be considered a success. I will keep you updated with my daily gifts. If you wish more information on this project please visit 29Gifts.org .
July 9, 2010 at 5:40 pm (Uncategorized)
I wish I had a winner to announce but unfortunately no one entered our little contest. Luckily my husband is very detail oriented and between the two of us we came up with something that I think works wonderfully! Without further ado, I present to you, Next Steps 4 MS‘s new logo:
Hopefully we’ll be seeing it on shirts and other merchandise not too far in the future!
June 9, 2010 at 3:42 pm (Uncategorized)
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?
June 9, 2010 at 2:02 am (Uncategorized)
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 
, 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 .
June 7, 2010 at 3:11 am (Uncategorized)
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.
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MS and Me : My Story 