Multiple Sclerosis and other people

Don't you just feel that because you are so immersed in this world of multiple sclerosis, by default, those around you are as well? What I am learning over and over again is that no one really understands multiple sclerosis. Heck, those of us who have it don't even understand this crazy disease.

Case in point. Last week our electricity was knocked by a storm. It was out for 12 hours. I live in Texas. I have multiple sclerosis. I can not be in the over one hundred degree heat for so many hours. Neither can my dad who has cancer and a heart condition. About 3 hours into the power outage I called my brother to ask if my 75-year-old father could spend the night at his house. My brother said to call back at 11 p.m. if the power was still out. This floored me that my brother would not take my own father in. Furthermore, I could not believe that my brother did not tell me to get out of the heat and come over.

Then I remembered. My brother probably knows nothing about multiple sclerosis like the majority of the population. He does not know that heat is horrible for me and my dad. He does not know that stress is the other awful antagonizor of multiple sclerosis. He does not know but it is our job to help educate people so they can support us better. Don't you agree?

Multiple Sclerosis and Tysabri

I had a chat with a multiple sclerosis drug rep the other day that was a little alarming. The rep mentioned the little known fact that once you have Tysabri in your body -- even just one time as a multiple sclerosis treatment, you can never have chemotherapy drugs. This information is hard to find but it just reminds me that we have to really wait until we know about a drug before we jump on the bandwagon.

Those of us with multiple sclerosis are so desperate for a better disease modifying drug that we'll try anything. I know that I know I am. I was going to participate in a test with an oral version of Tysabri. The information about Tysabri and chemotherapy drugs is scary. The more progressive forms of multiple sclerosis rely on the chemo drugs as a treatment. Not to mention the issue of what if I ever got cancer? What would I do to fight the cancer?

I learned a very valuable lesson. The responsibility is on me for whatever I put in my body. I have to take this very seriously especially because I do have multiple sclerosis.

Multiple Sclerosis and Swimming - again!

I have been swimming 2-3 times per week for the last five weeks. Wow. Multiple Sclerosis, watch out. I can not believe the difference in my ability to make it through 30 minutes of walking and swimming and the power I feel when I swim. This could just be the solution I have been searching for to help me with the continuing challenges of multiple sclerosis.

Multiple Sclerosis can really zap you so I am desperate for anything that helps improve my functionality and my sense of well being. Here's what I have found with swimming:

- Increased kicking ability and therefore more strength in my legs (I could barely kick when I started 5 weeks ago)
- Better intake of oxygen (I am breathing deep and exhaling deep when I swim - more oxygen means more energy and vitality)
- More stamina (at first I almost felt like I had to nap after swimming for 30 minutes, now it makes me super energetic after 30 minutes - something everyone with multiple sclerosis needs) - Increased feeling of accomplishment (I feel amazing after I swim because I can do it now)
- Reduced stiffness because I am moving in a manner that is not hard on my body

I have been swimming outside at my friend's pool. We'll move into the health club once it gets cooler because I simply can not give this up! It is one of the only things that seems to help me with my multiple sclerosis.

Losing Weight and feeling better with multiple sclerosis

It's hot (105 degrees in Texas). My multiple sclerosis seems to be in rare form lately and it occurs to me that it might be because I am making poor food choices (and thus gaining weight).

Don't you feel so much better when you are in the best shape you can be? If I am either heavy or gaining weight, I feel miserable. As a result, my multiple sclerosis is usually not good either. I am tired, lethargic and generally grumpy - that combined with the minimized ability to walk and move smoothly. Bad news for multiple sclerosis.

In general, gaining weight and being bigger than you want to be sucks. Yet having multiple sclerosis makes me less mobile than I would ordinarily be. It is a double-edged sword. I am convinced that losing weight is a way in which I might take control of the things I can control in my life. It may be the only way I am going to feel good about myself.

So with that in mind (I will try anything to psych myself into it), today I am going to focus on making better choices for my health and multiple sclerosis. Losing weight will help me both lose weight and feel great.

What would losing weight do for you and your health?

Multiple Sclerosis and overall health...

Did you ever notice that when you have a cold or a headache, anything where you are not well, you multiple sclerosis seems worse? Today I had a blinding headache and I could not walk worth a darn for the first several hours of the day. I am mesmerized by how powerful multiple sclerosis is - it just wreaks havoc on our bodies.

How do we plan for our life when we never know minute to minute how we'll be feeling with multiple sclerosis? I am at a loss. I do my best to do things to keep feeling good (stay out of the heat, not allow myself to get too exhausted, not eat too poorly, minimize my stressful situations) however, all I can control is what I can control. I can't manage for everything else.

I have decided to agressively go after my diet as that is probably the best thing I can control. I am gaining too much weight and I believe that is putting stress on my body and therefore impacting my multiple sclerosis. More on the changes next time!

Multiple Sclerosis and 4ap

I was having huge fatigue problems a few months ago (even though I have had multiple sclerosis for several years). It got to be so bad that I would wake up from a wonderful night's sleep absolutely exhausted. Part way through the day on most days I would really fight the urge to take a nap. I had never faced this in my journey with multiple sclerosis so it was a bit of a shock when it just started happening.

Finally, it got so bad that when I went to my neurologist, I asked (begged) for anything that might help with this side effect of multiple sclerosis. She recommended I start immediately on 4-amino pyradine. So here is my take on it:

- it is predominately made by a compounding pharmacy (there were only five of these in the major metro area surrounding me)
- I had difficulty (and still do) taking it too late in the early evening that it disrupts my sleep
- if there is too much time between when I take my last dosage at night and my first dosage the next day I have huge problems with nausea and dizziness
- if I do not take it with food I get terrible abdominal pains
- I would also rather die than not have this as part of my life with multiple sclerosis!

4ap has made a big difference in my life in the past several weeks. The side effects are nothing in comparison to how it makes me feel- as if I sometimes don't have multiple sclerosis. I have energy, enthusiasm to do things and I rarely have the need to rest during the day. This is a big, big difference for me.

Multiple Sclerosis and Keeping Cool

Are you keeping cool in this summer heat? I seem to have more exacerbations the warmer it gets, which of course makes my multiple sclerosis worse. My friend who also has multiple sclerosis swears by the different cooling devices you can get. I am sold now, too, now that she bought me the scarf.

I use the cooling scarf half of the time when I go outside and always when I go excercise. With 100 degree temperatures, those of us with multiple sclerosis can not afford to overheat our bodies in the summer.

There are all kinds of devices you can get. If you are worried about fashion in addition to your multiple sclerosis, have a cute outfit and weave your cooling device into your outfit. I would much rather be able to walk than to look cute.