So, I hung on well until needing to do day 9. Day 9 was this past Saturday. I wound up being too tired to do it, so I picked up day 9 today. I am having trouble with about 35% of it. My trouble has to do with needing to pick up my left leg and I can’t do that because my left arm does not work….so I am trying to pick up my left and right legs in some exercises with only my right arm. When my core gets stronger this may be more possible, but right now it is FRUSTRATING.
I have continued with my supplements and taking my medicine at regular times instead of when I remember.
I did get off the floor after exercising without assistance….so yay!
I actually started on Saturday, March 30. When I say that I started, I mean that I started trying to get on the MS Gym website and began taking all of my supplements as prescribed. My neurologist has prescribed 300 mg of biotin per day, 1200 mg of Alpha lipoic acid per day, and five thousand milligrams of vitamin D per day. Additionally, he has prescribed an old medicine called clemastine. The biotin, alpha lipoic acid and clemastine are all substances that have shown to be beneficial repair. I believe most of the studies have come from Australia. I take the vitamin D because I’m chronically low in vitamin D as are most people with multiple sclerosis. As of today, I have taken all of these supplements for a total of six days.
I started the MS Gym on Monday. I had promised myself I would follow the program carefully. Therefore, on Monday I watched over an hour of introductory videos. Any of you who know me, know that this is not the way I like to do things. I would rather just jump in. So, Tuesday I was ready to start. Each workout is 30 minutes long. I think I cried through 15 minutes of the first one. The reason I cried was not that it was hard…. Or I should say it didn’t look hard. I cried because it looks so easy but it was so hard for me. The video required heavy use of both hands. Because one hand does not work, I had to do everything with my good hand. This proved to be exhausting. Wednesday was the second day. This day did not prove to be any easier than the first day because I had to get on the floor. Getting up and down off the floor is very hard for me. If you doubt me, I challenge you to get on and off the floor using only your right arm and your right leg. I didn’t cry during this video I just cursed. I woke up Thursday feeling awful and exhausted so I did not do my exercises. I felt very guilty that I couldn’t do it. Today is Friday and I rallied. I completed day three in the allotted 30 minutes. Today was very heavy on upper body which meant I had a tough time because of my left arm.
On a sidenote I quit Coca-Colas on Monday and in trying to recommit to no soda and looking to restarting the Dr. Wahl’s diet.
PS…..started my ESTIM on my hand today.
When I started this blog, I called it slipping through my fingers because I’m a knitter so yarn slips through my fingers; I’m a mother so I felt time would slip through my fingers; and I have MS so I was afraid that my health would slip through my fingers. All of these things have come to pass.
My knitting progressed by leaps and bounds over the years. I’ve documented a number of beautiful things of which I’m quite proud. I worked hard to increase my skills and began teaching young and old alike. I’m proud to pass on my knowledge to more people than I can name, but now my MS has progressed to the point that I find it difficult to hold my left needle…. meaning, I do very little knitting these days. However, I do still teach…successfully.
Our oldest child is now 17 and a junior in high school. She is looking at colleges, working a part-time job, and looking toward her future. This means she will be moving out of the house soon….our time with her, as a child, is slipping away. Our youngest child is 14 going on 25. She, unlike the oldest one is ready to fly the coop…now. All that we can do is love her gently and make sure she understands she always has a soft place to land. Again, my time with her is slipping through my fingers daily.
My health is beyond slippery at the moment. In addition to the left arm that is as useful as a wet noodle, my left leg likewise does not hold up it’s end of the bargain. The purpose of starting this blog again is to have a place to record my thoughts regardless of if anyone else wants to read it. I am starting a new exercise program called the MS Gym. I am both hopeful and desperate. It seems at that nothing to lose and perhaps something to gain. Most of the posts will simply be a record of how I feel on that day and if I took all of my supplements and did my exercises.
I am waiting for the changes. Some I wait for impatiently, some I dread, some have to happen, some can’t. Changes are part of life. The only end to change in one’s life is the end of one’s life. I know this, but it doesn’t make some changes any easier.
We’ve spent all summer working on the new house…talk about a change! The house is incredible and I cannot wait to move in, but I have to wait another week I think. There are still a handful of things that need to happen and I don’t want to rush in where we are living in an uncomfortable situation. It’s funny, I am dying to move in, but I am nervous and worried at the same time.
My sisters are all having major changes happening in their lives. I am standing on the sidelines waiting to see who needs to be picked up. My stomach turns and churns watching and waiting for the last shoe to drop in all of these situations. I know that at least two of the sisters will come out stronger on the other end, but I can’t stand to see them hurt, but the other sis…I’m not so sure about.
My girls have changed schools. We put them in the local Waldorf school after three years of public school for the oldest and one for the youngest. This was a very hard change to make. We fell in love with the school more than a year ago and have been planning this change for that long, but we still had tears from the oldest for the first couple of days. It’s funny, she knows that this is where they belong, but she is still homesick for the other school. They have both started to settle in and seem to really be blossoming. They are wonderful girls (yes, I am biased, but this is true). They are creative, curious, polite, full of wonder, adventurous, willing to try, and good hearted….all of these things seem to help them fall right in with the other children and I look at their classmates and am amazed to find such confident, grounded little beings. This has been a great change even with the challenges.
Speaking of changes, there are some I need to make (or I should say, Henry and I need to make). On the health from the two of us are woefully unprepared to get older. We need to clean up our diets and start exercising. And I need to find a way to learn to let go of stress or at least not react so strongly to it. The summer’s stress has caused me a hard summer and at least one minor exacerbation. I need to get healthy physically, mentally and emotionally to lull my MonSter back to sleep. Once we finally get moved, the changes will be coming on that front.
Now I know most of you bother with my blog more for pictures and knitting than for the dribble above, so ask me how I meet all of these changes… Well, I continue to knit. As Elizabeth Zimmerman says, “Knit on with confidence and hope, through all crises.” I have not exactly produced a ton, but I have managed to continue to knit a little here and there throughout all of this junk and have a few things to show for the effort. I made a baby jacket for a friend fo a friend and I knitted a big headed monkey for Mycah’s birthday. I also started a vest for me for winter. The only downside to the vest is that I have to borrow it back from the shop as Carolyn gave me the yarn to knit it for the shop sample!
Yes….it’s that time of year again. I find it hard to believe it has been a year since my last similar post. Little did I know then that I was on the verge of a relapse. Little did I know it would effect me and my family so much. I have recovered from the relapse with little evidence of it other than the stark reality that I really do have MS and it REALLY can disrupt our lives. I am so fortunate that I have made such a great recovery…..many are not as fortunate. I am so lucky that we have health insurance…many do not. I am so lucky that I have a husband who sands with me and even carries me when I need him to. I have my girls who love me and are so gentle with a sick mommy. I have parents, step-parents,sisters, grandparents, and more cousins than I can shake a stick at who support me. I have friends who have become family who support me. I am soooo lucky…but many are not.
For those who aren’t as lucky…I am going to walk in the MS Walk at Edwin Warner Park.
I have another reason for walking…..my two girls. I never want them to have to hear “you have MS.” I never want your kids to hear it. I would be quite satisfied if no person ever had to hear those words again.
Support my walk…help me beat the MonSter down!!!
4th Annual MS Awareness Week
March 2 – 8, 2009
MS Awareness Week leads into the annual Public Policy Conference in Washington D.C. The goals of this week are to acknowledge people who are a part of the movement, to invite new people to the movement and to encourage everyone to take action. The Mid South Chapter has many programs and events planned for the week. Check out the Programs and Services page for more information on these events.
I am proud to say that I met with the trainer at the YMCA today. I signed up for a program called First Steps. It is free to new members. It’s one of those where they discus your goals, get you going and then you check in every other week or so for some tweaking. It’s not a full blown personal trainer thing, but it is definitely a first step, a good step, for me. I’ve spent the last four years mad at my body, disgusted with it’s major flaw that has given rise to weight gain, fatigue and various stupid little miseries that I don’t care to name. I have allowed MS to define me and make me hate my body. I was once healthy and very strong. I could out work Henry. We worked sun-up to sun-down remodeling and organizing the farm. Lately, I feel lucky if I make through the end of the day. Well, I’m done. MS…..BITE ME.
Anyway, sorry that little rant. So, I met with the nicest guy at the Y. He put me through the paces, but was very sweet and encouraging. He made me a little card so that I can track stuff and said “good girl” when I finished things or needed a little boost! I felt like I really accomplished something. I worked out for about 45 minutes doing both cardio and weight training. I committed to doing this three times a week. I have to do this two more times this week and meet back with him on Monday. Plus, I am going to continue to swim with Wendy on Tuesdays and Thursdays. I am very hopeful and excited about this. I think tomorrow I will get Wendy to take my measurements so I can write them down and have another way to track my progress instead of just using a scale.
Another great thing happened today. I finally got my butcher block. I ordered it about a month ago. When I got home from the Y Henry was putting the legs on. The thing weighs 168 pounds. We had quite a time getting it upright! It is perfect. I couldn’t be happier. Mycah went to Target with me to get stools. We got those saddle style stools because they have a pretty small footprint. I was hoping that having a palce for the girls to be in the kitchen would encourage them to be in there while I am cooking and/or help with the cooking. Well, it worked…at least for the first night. Grey and Mycah pulled the stems off the spinach, helped measure the brown rice for cooking and watched me prep the chicken for baking. (no, i did not put raw chicken on my new butcher’s block) They were so thrilled with the stools and the block that they asked to eat dinner at it. We did and had a great time.
My last little thrill just occurred. I got an email saying that my wheel should be here Wednesday!!!!!!!!! Yes! I was hoping it would get her before Lori and her family come up this weekend. This is going to be fun.
I am posting pictures for posterity…not because this damn yarn is any good! Well, it is not terrible and does seem like it will work as yarn…just not what I envisioned. The reason it is two colors is that I was trying two different types of wool. The brown is Shetland and the white is Blue Faced Leicester. The BIG wound ball of brown is not my hand-spun, it is Eco-wool by Cascade. Is that not the coolest thing ever! It is not dyed, the sheep was that color and there is almost 500 yards there. It retails for 16.50. This is a great value and it feels pretty good due to the minimal processing. The yarn is for Henry’s sweater. I have been through three yarns and probably the same number of needles, but I finally have gauge and a fabric that we both like.
I’m a little scattered right now. The rough draft for Henry’s thesis is due the 15th and I am chief editor. Ughhhh. I am having he hardest time focusing on it because I don’t want to do it. I just want to knit and bury my head in the sand! Oh well, I’ll get it done.
By the way….I have now been to the Y to swim 8 times in 2.5 weeks. I am trying desperately to turn over a healthy new leaf. I feel like I need to be in the best physical shape I can be in. I don’t want the next relapse to send me into a tailspin again. Dr. M says that the healthierI am, the better able my body can cope with the MonSter. I’m taking him at his word….time for me to get my head out of my butt and take care of myself.
Guilt is a funny thing. It’s one of those feelings that has it’s place. It keeps us in line. It motivates us to follow through when we promise something, to not do something that we know we will regret, to tell the truth. Unfortunately, it also causes me to work when I’m sick, to feel bad if I can’t get off the couch and to generally beat my self up for not being perfect. Hubby just explained to me that I am making myself miserable and he does not want the girls learning my bad habits. Whoa…talk about a “come to Jesus moment.”
I’m in the middle of the worse exacerbation I have had. No, I haven’t lost the use of my legs, arms or eyes. I have excruciating pain reverberating up and down one side of my head. Apparently it is trigeminal neuralgia. http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446/DSECTION=1 It’s not pretty people. The only way I’m not writhing in (intermintent, but seems pretty frequent) pain is by taking a load of drugs…then I’m stupid. I can’t wash my hair, bend over, eat anything hot, cold or bubbly. The girls can only kiss me on one side of my face and unfortunately they know it. I feel so guilty for not cooking and cleaning and most of all not working. I had to call in. It makes me sick. I have just given my notice and want everything to be perfect before I leave and I can’t stand to hold the phone to work. Guilt, guilt, guilt. I feel like I have a big fat looser sign on my forehead.
Well…that was a big long whine. On to better news. I finished the shawl for Grey’s school. They had a silent auction. I raised $11,000. I’m not sure how much the shawl fetched. I know it was over 60 or so. Here it is modeled my my friend Anne at Crazy Girl Yarn Shop in Coralville.
So, I’ve had six comments with six people named. I know another 4 plus my MS group of about 20….so with just a week’s worth of asking and only six people commenting, we’ve found 30. So, what was the point? I think the point was that we all stood still for a minute and thought about it. I think awareness is the first step. The next would be activism. That is one I plan to work on. I have walked in a 50 mile walk to DC and raised a good deal of money doing it, volunteered for the MS Jack and Back in TN and donated to various other riders or walkers through the last couple of years. I’m going to figure out how to do more during this next year…but in the meantime: Shelia, I’m on Rebif and would be more than happy to talk to you about it. Also, I got to know some great people in the MS community back in Nashville and I would love to hook you up. Anyone else out there struggling personally or know someone struggling with dealing with the MonSter….email me. I will be happy to lend an ear, maybe that’s what I can do to help right now.