tag:blogger.com,1999:blog-36794282024-02-08T11:13:13.169-05:00Amy's MS BlogI was diagnosed with mutliple sclerosis 10 years ago. Since then, I've used this blog to chronicle my life with MS and the lessons I've learned about the disease along the way.Unknownnoreply@blogger.comBlogger118125tag:blogger.com,1999:blog-3679428.post-41015870018821878382012-07-06T19:08:00.001-04:002012-07-06T19:08:10.961-04:00MovingAmy's MS Blog is in the process of moving!<br />
<br />
I'm consolidating my two blogs, Amy's MS Blog and The MS Mom Blog, and moving them over to WordPress. The new URL is <a href="http://www.themsmom.com/" target="_blank">http://www.themsmom.com/</a>. If you go over there now, you'll see a work in progress - the old posts are there, but I'm working on updating the format. It's just like a real life move. I'm unpacking boxes and figuring out where things belong. I'll soon have it set up so that the syndication, following, RSS feeds, etc. are available options.<br />
<br />
In the meantime, I've published a first person article on Yahoo about my life with MS: <span class="" id="lw_1341615808_1" style="color: #3a65bb; font-family: Arial, Helvetica, sans-serif; font-size: 12px; outline: 0px;"><a href="http://voices.yahoo.com/multiple-sclerosis-me-unwelcome-companion-11533120.html" id="yui_3_2_0_11_1341615739407437" rel="nofollow" style="color: #3a65bb; font-family: Arial, Helvetica, sans-serif; font-size: 12px; outline: 0px;" target="_blank">http://voices.yahoo.com/multiple-sclerosis-me-unwelcome-companion-11533120.html</a>. </span><span style="background-color: white;">Other than that, I've been like most Americans lately - fighting the heat. The temperatures have been bad enough for most people, but for those of us with MS, it has been a nightmare. I especially feel for those folks who've been without power.</span><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-3701253681803321202012-07-04T00:12:00.003-04:002012-07-04T00:12:26.314-04:00Real Housewives of North Carolina<br />
<div class="MsoNormal">
On this week’s episode, Amy gets Botox.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Yup, I did it. I
never thought I would voluntarily allow botulism to be injected into my
body. But like a lot of women, my
opinion of it changed as I grew older.
The biggest reason for that?
Because I found out there are other reasons to get Botox
injections. It’s not just for shaving
off years anymore.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There are actually three approved uses for botox in the
treatment of multiple sclerosis:</div>
<ol start="1" style="margin-top: 0in;" type="1">
<li class="MsoNormal">Botox
is injected in the legs to address lower body spasticity.</li>
<li class="MsoNormal">Botox
is injected in the arms to address upper body spasticity.</li>
<li class="MsoNormal">Botox
is injected in the bladder to address issues with urination urgency.</li>
</ol>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The third one makes me go “Ew.” It’s one thing to think about injecting a
limb, but the bladder? My skin crawls
just thinking about it. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Fortunately for me, I was dealing with the first situation,
lower body spasticity. A common
treatment option for spasticity is baclofen, which can be taken by pill up to
four times a day or delivered into the bloodstream via pump. Since my leg still locks up on the maximum
recommended pill dosage, my neurologist referred me to a rehabilitative
specialist who could administer the Botox.
It usually takes about a week to realize the benefits of the shots, and
they last for about three months.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So how am I doing?
Too soon to tell. Meanwhile, I’m
scheduling physical therapy to work on gait management and develop a home
exercise program. I’m hoping the Botox
plus therapy plus home exercise equals walking minus a Frankenstein shuffle.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-60538422839219359382012-06-25T18:16:00.002-04:002012-06-25T18:16:39.824-04:00When a Celebrity Has MSOne of the biggest MS discussions in the past week has been Jack Osbourne's diagnosis with the disease. Personally, I've run through a wave of emotions and thoughts as I've been processing the coverage of his diagnosis.<br />
<br />
<b>Sympathy</b> - Jack's diagnosis came after experiencing decreased vision in one eye, which ultimately became so bad that he had no central vision in his right eye for a period of time. I understand all too well what he experienced, since that's the symptom that led to my diagnosis. The condition is called optic neuritis, which means that there is a lesion on the optic nerve that impacts vision in the affected eye. When it happened to me, I did some online research. The good news? For a large percentage of optic neuritis sufferers, the vision returns to almost as good as it was before the episode. The bad news? A majority of optic neuritis sufferers either already have MS or will be diagnosed with it between 5-10 years of that episode. I can only imagine the fear, confusion, and other emotions he was dealing with, based on what I dealt with myself.<br />
<br />
<b>Helplessness </b>- Jack's mother, Sharon, has been expressing so many of the same things that my mom did when I was diagnosed. Had she done/not done something during pregnancy/childrearing that could have prevented the MS? It was painful watching my parents dealing with their helplessness as their daughter dealt with something that they couldn't fix. <br />
<br />
<b>Frustration</b> - There are so many sources of frustration. When you're diagnosed with MS, you're suddenly and vehemently reminded that you're not in control, that any moment your own body can turn on you. There are ways to try and improve your situation, but there are no guarantees. For me, one of the biggest frustrations is the misinformation and sensationalism about MS. Is it an incurable disease? Yes. Is it debilitating to many of those striken by it? Yes.<br />
<br />
Is it fatal? NO. But that doesn't stop magazines like People Magazine from putting titillating headlines on its cover (<a href="http://www.starpulse.com/news/index.php/2012/06/24/jack_osbourne_mom_sharon_open_up_abou" target="_blank">"I won't let my son die"</a>) to feed the media frenzy. A public figure's diagnosis can increase public awareness, but it can spread misinformation. If you follow Jack Osbourne on Twitter, you'll see that he's as annoyed with this media tendency as I am.<br />
<br />
<b>Hope</b> - Yes, MS is currently incurable. Yes, right now there are limited options for treating the disease. But there are a lot more options now than there were when I was diagnosed 10 years ago, and there are a lot more in development and testing. While the current picture for MS is definitely not sunshine and roses, the end of the tunnel is definitely brighter than it has been.<br />
<br />
Will there be a cure for MS in my lifetime? Don't know. And not sure that's the right thing to be looking for right now. I keep thinking back to a speech by David Lander (Squiggy from "Laverne and Shirley") at an MS conference about 10 years ago. There are so many different experiences with MS. Would a cure help many or just a few? What would it mean to "my" MS? But I don't want the talk about whether or not MS can be cured to interfere with the efforts underway to address MS symptoms and relapses.<br />
<br />
So what do I have to say about all of the media frenzy surrounding Jack Osbourne as he deals with this diagnosis? Godspeed, my colleague. We didn't want to be put on this journey together, but we are. Don't let this illness get in the way of the joys with your loving family (especially that sweet new baby you have).Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-79857982991198140932012-06-22T20:03:00.002-04:002012-06-22T20:03:16.220-04:00Hot Fun In The SummertimeSummer's here, and it brings a whole set of challenges. How do we beat the heat? How do we exercise safely? <div>
<br /></div>
<div>
When I first got diagnosed with MS, my neurologist encouraged me to go swimming. Last year, I found out what a disaster it could be to try and swim in the ocean. Oh, the ocean water wasn't the problem - I just couldn't walk in the sand to even get to the ocean. Dry sand + MS mobility issues = nightmare. And the pool scared me. Slip sliding everywhere did not appeal to me. But I've learned that there putting together a simple survival kit alleviates my fears and makes it easier for me to enjoy pool time.</div>
<div>
<br /></div>
<div>
If you want to know what's in my survival kit, check out my article on the Yahoo Contributing Network <a href="http://voices.yahoo.com/multiple-sclerosis-swimming-survival-kit-11478290.html?cat=5" target="_blank">here</a>. Yup, I'm a writer now. I'd like to expand my blog from being a simple journal of one woman's MS and take a broader focus. I'll be writing articles, following other blogs, and contributing to other sites as appropriate. So if you have any ideas to help me increase my presence and participation in the online world, please let me know.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-88547514169411589252012-06-15T22:53:00.002-04:002012-06-15T22:53:41.337-04:00Walking the TightropeI'm watching Nik Wallenda walking the tightrope across Niagara Falls as I write this. I wasn't going to watch this stunt, but I'm finding myself inspired by his walk.<br />
<br />
He's talking to the reporters as he walks. He's pumping his fist, kneels for the crowd, and still is moving forward. This is such a wild journey, and it shocks me that he is able to keep his eye on the prize with all of the distractions. The wind, the mist, the wet wire, the crowd, the reporters...all of them could be an excuse for failure. Instead, he's smiling and keeps moving forward until he crosses to the finish.<br />
<br />
One of his responses to the reporters just blew me away. When asked about the challenge, he talked about all of the people facing obstacles and how they should just focus on the accomplishment. He didn't dwell on the obstacles, he just kept moving forward. He just told the Canadian border officials that the purpose of his trip was to inspire the people around the world, and he did that for me.<br />
<br />
Take your time. Step by step. Sounds so simple, but it wasn't simple for him. And those with multiple sclerosis have our own tightrope to walk every day. It's so easy to lose the concentration, lose the focus, lose the faith. It seems so easy to just focus on the next step, but we know it's not the easiest to execute in reality. Wind gusts and mist are replaced by fatigue and spasticity. <br />
<br />
Wallenda cited his training, his focus, his prayers, and his family as the reasons for his success. While we can't be trained to conquer MS, we can learn ways to adapt and ease the struggle. We may have trouble focusing sometimes due to cognitive challenges, but we can try to train our brain and take care of ourselves so that we struggle a little less. We may feel horribly alone, that no one can understand what we're dealing with, yet we can reach out for support from friends, loved ones, and a higher power if we believe in one.<br />
<br />
Take your time. Step by step. Sounds so simple, but it's not simple for us. We may not have chosen to walk this tightrope, but it's the only path ahead for us.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-54384956138841956992012-06-13T13:13:00.000-04:002012-06-13T13:14:04.945-04:00Meal PlanningMeal planning can be an effective weapon in the battle against MS, allowing for increased nutrition and fatigue management. Check out the latest post on The MS Mom: <a href="http://themsmom.blogspot.com/" target="_blank">Meal Planning 101</a>.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-41248812529310321352012-05-31T10:25:00.002-04:002012-05-31T10:25:25.355-04:00MS FatigueCNN is featuring MS in a lot of health articles lately - good to see a major news outlet keeping MS in the forefront. Here's a link to their articles about a common MS issue, fatigue: <a href="http://inhealth.cnn.com/stepping-through-multiple-sclerosis/understanding-ms-related-fatigue?did=t1_rss1&hpt=hp_bn16" target="_blank">Fighting the Fatigue of MS</a>.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-27118885280649182312012-05-30T13:29:00.000-04:002012-05-30T13:29:06.105-04:00World MS DayToday is World MS Day. The NC chapters of the National Multiple Sclerosis Society are honoring the occasion with an advocacy day. Today is a day to contact elected officials and be one of the 1000 Faces of MS, personalizing what it means to live with or be affected by MS.<br />
<br />
Here's my story:<br />
<br />
<br />
<pre style="white-space: pre-wrap; word-wrap: break-word;">I am a married mother of 2 small boys who was laid off from work
earlier this year. I've been fortunate enough to have insurance that
covered all of the expenses associated with MS, such as MRIs, frequent
medical appointments, IV infusions, and numerous medicines. But once
my COBRA runs out, I'll be faced with the horrible dilemma of not being
able to afford insurance, or not being able to get the treatment I need
to function. Trying to find work with MS is a struggle, since some
people equate trouble walking with trouble getting any job done during
the day (even a sedentary one).
This face of MS knows I have a lot to contribute, as a mom and an IT
professional with a master's degree and multiple certifications. Like
so many people with MS, I don't want a handout - I just want a chance.
People with MS can still live and thrive, if they have the access to
the medical care and medicines. During the 10 years since my
diagnosis, there has been so much progress in treatment options...but
there's still so far to go.
MS strikes people in the prime of life, when they still have so much to
offer. Supporting MS research and treatment options is an investment
in a vital part of the population that has a lot to contribute.
I am one of the "1000 Faces of MS" and this is what living
with MS means me.</pre>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-86696975170219675832012-05-29T09:38:00.002-04:002012-05-29T09:38:34.609-04:00Mobility DevicesWalking can be a huge challenge for people with MS, courtesy of balance issues, spasticity, strength problems, and fatigue. CNN has a slideshow on some of the mobility devices available for MS patients: <a href="http://inhealth.cnn.com/stepping-through-multiple-sclerosis/mobility-devices-for-people-with-ms/?did=t1_rss1&hpt=hp_bn16" target="_blank">Stepping Through Multiple Sclerosis</a>.<br />
<br />
I've used a few of these. <br />
- The foot up was useful for foot drop issues, but it complicated those moments when I needed to let my foot down, like going down the stairs. <br />
- I've relied on a cane quite a bit. When I realized I'd need a cane, I told my husband I wanted a cool one. Not only did he find me a beautiful one, but he got me a collapsible cane so I could keep it with me.<br />
- I used an ECV (electric conveyance vehicle) when my family went to Disney World. Without it, I would not have been able to enjoy the vacation with my family. It was surprisingly easy to navigate, and I got to spend a lot more time in the parks. There's no way I could have handled all of that walking.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-64788757263460318662012-05-27T15:45:00.000-04:002012-05-27T15:45:06.226-04:00MS Symptoms ArticleHere's a good slideshow from Health Central summarizing more common MS symptoms: <a href="http://www.healthcentral.com/multiple-sclerosis/cf/slideshows/10-symptoms-that-could-be-ms/tingling-in-the-fingers/?ap=825" target="_blank">10 possible MS symptoms</a>.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-71586691014740089842012-05-26T10:23:00.001-04:002012-05-26T10:23:32.148-04:00Into the TubeMRI. One of my least favorite acronym when it comes to MS. <i>Besides, of course, the acronym MS itself.</i><br />
<i><br /></i><br />
It would be more accurate to say I have mixed feelings about MRIs. Since I'm claustrophobic, the idea of getting into a loud, confining tube is not the way I'd choose to spend my time. On the other hand, the MRI is such an effective tool for neurologists in monitoring MS activity that I've just had to suck it up and deal with my fears.<br />
<br />
MRIs can provide useful information both about your current situation and your progression with the disease. The MRI can show hot spots of activity that explain current or recent exacerbations. For example, when I had a bout with double vision, my neurologist was able to see the lesion that had caused it. <br />
<br />
For those of us on Tysabri, an MRI can provide even more valuable information. My neurologist explained that sometimes MRIs can show early signs of PML. The sooner PML can be detected, the better the chance of being able to treat it.<br />
<br />
Comparing MRIs over time provides a lot of valuable information to your neurologist. By comparing the most recent MRI to previous MRIs, neurologists can see whether there's been any changes. If there are no changes, then that tells the neurologist that your current course of treatment is effective. If there are changes on the MRI, then the neurologist can adjust treatment options accordingly.<br />
<br />
So, how do you get through an MRI? <br />
<br />
This is NOT the time to be brave. If you have the slightest suspicion you are claustrophobic, tell your neurologist. You could be prescribed a relaxant, or you could even be given a valium IV during the MRI. If you get the meds you need to get through the MRI, it's better for everyone - you'll get through it faster, and the technician has a much better chance of getting good images. Trust yourself and don't listen to others. Before my first MRI, a family member told me I was being a diva, so I tried a medicine-free MRI. I had to be pulled out of the tube sobbing. Instead of getting the images, I had to reschedule for another date, which meant I wasted everyone's time. <i>On the plus side, I did enjoy saying "I told you so" to the family member who had questioned me. Small benefit, I know. </i>Ever since, I've had my neurologist prescribe IV valium, and the MRI goes smoothly for everyone.<br />
<br />
If you do get IV valium, you need to have a driver, and you're not supposed to drive or make any important decisions that day. The receptionist told my husband he could take advantage of me that day. When she realized how that sounded, she reminded him that she meant that for legal matters only. He grinned.<br />
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You'll also be given a questionnaire to determine whether there's anything that could interfere with giving you an MRI (ex. if you've been shot). Some MRI facilites have music (and in some cases videos) to help distract you during the procedure. You'll change into scrubs and head into the room where the MRI machine is located. <i>At this point, I introduce myself to the machine by sticking out my tongue at it, but that's not required.</i> Then the technicians will get you set up for going into the tube. If your doctor has prescribed valium, a doctor will come in and adminster that as well. Before you go into the tube, they'll hand you a panic button that you can push if you need to come out of the machine before the procedure is complete. <i>Trust me, the button works - you don't have to test it for yourself.</i><br />
<i><br /></i><br />
You may hear the doctor and technician refer to contrast or dye. In those situations, the technician will get a series of images, then inject some dye into your IV before taking the images again. This dye will provide contrast, which could make it easier for anyone reading the MRI to detect lesions.<br />
<br />
After your MRI, you may be given a CD with a copy of the MRI images. Store this CD in a secure place. If you go to another doctor or a different MRI facility, you'll be able to provide those treating you with some valuable history to help them treat you better.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-58728217646043551062012-05-15T01:21:00.000-04:002012-05-15T01:22:32.628-04:00P-M-L J-C-V M-O-U-S-EI am JCV positive.<br />
<br />
For most people, that doesn't mean anything. But people on Tysabri, or those who know people taking Tysabri, will probably understand why I know or care about JCV.<br />
<br />
Let me backtrack by explaining a few terms....<br />
<br />
Tysabri - It's an MS drug administered every 4 weeks by IV infusion. Unlike the earlier disease-modifying drugs, Tysabri is not self-administered, so no more shots at home. You go to an infusion center every 4 weeks and sit in a comfy chair with an IV in your arm. Then you stick around for another hour so the nurses can make sure you don't show any allergic reactions to the drug. That's it. You don't have to think about medicine for another 4 weeks. No more Sharps containers, no more alcohol wipes, no more psyching yourself up at home to stick a needle into your own body on a regular basis. During clinical trials, patients showed a significant reduction in relapses when taking Tysabri, and the drug was hailed as a huge positive step in the treatment of MS.<br />
<br />
PML - PML stands for progressive multifocal leukoencephalopathy, a rare brain disorder that can kill or cause serious disability. Unfortunately, one of the risks of taking Tysabri is an increased risk of developing PML. That's a big reason why Tysabri is not usually the first drug of choice for MS patients and is usually recommended only after other disease-modifying drugs don't produce satisfying results. This risk is why Tysabri is one of those drugs with a black box warning detailing the potential dangers of taking the drug. It's also why patients on Tysabri are closely monitored and can only have their infusions in IV centers participating in the TOUCH program which oversees the administration of the drug.<br />
<br />
JCV - JCV is the virus that causes PML, and it's a virus to which a large percentage of the population (I've seen numbers ranging from 50-90%) have been exposed. People taking Tysabri will be tested to see if they have the virus in their systems. If not, then they don't have to worry about developing PML. If they do, then they are at risk for developing PML. The risk increases further the longer you take Tysabri and whether you took certain immune-suppressing drugs before taking MS medications.<br />
<br />
Given the high percentage of the population that has been exposed to JCV, I was not surprised when my blood test showed that I had been exposed to the virus. My neurologist and I talked about it during my last appointment, and I'm sure it won't be the last discussion we have on the subject. Typically, JCV-positive patients are at greater risk after taking Tysabri for 2 years, and I've only been taking it for 7 months. We agreed that for now, it's OK for me to still be getting the infusions, but that I need to speak up IMMEDIATELY if I notice any new or worsening symptoms. It used to be thought that there was no cure or treatment for PML, but when symptoms are detected early, stopping the Tysabri and doing a plasma exchange to flush out any remaining drug. <br />
<br />
My neurologist also told me that brain MRIs can assist in the early detection of PML, so it was back in the tube for me. Since I'm claustrophobic, I wish I could avoid MRI machines, but when it comes to MS, neurologists get so much information about the disease and its progression that I have to just suck it up, take my IV valium, stick my tongue out at the MRI machine before going in, and begrudgingly accept the value that the MRIs have on my continued treatment. I can't let my fear get in the way of my treatment.<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-86661382773175629402012-05-08T22:40:00.000-04:002012-05-08T22:40:22.116-04:00Our Non-MS LivesPrimary elections took place today here in North Carolina. After I left the polling place, it hit me how I did something important that had nothing to do with having MS. Yes, my decisions may have been influenced by having MS, but I was doing something important for all adults, not just those with MS.<div>
<br /></div>
<div>
One of the pitfalls of having MS is letting it take too much of a central role in my life. Yes, I have MS, but there are so many other aspects to me too. I can't let my disease completely overshadow the rest of my life and responsibilities.</div>
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<br /></div>
<div>
<b>Managing my health</b> - One of the biggest mistakes I've made - one that almost cost me my life - is ignoring health issues other than MS. I ended up in the hospital earlier this year because I had mistakenly attributed my leg problems to spasticity. Yes, that's part of the problem, but I was ignoring the symptoms of a life-threatening blood clot in my leg because I wasn't thinking outside of the MS box. There's a reason that MS patients are advised to keep a close relationship with doctors other than their neurologists - we're not immune to other health issues because we've got MS. I've got to make sure I keep up with all of my medical appointments and make sure I don't get so focused in on treating my MS that I forget to handle the other health issues that come my way.</div>
<div>
<br /></div>
<div>
<b>Citizenship</b> - I voted today. I can't ignore my responsibilities as a citizen of this planet just because I have MS. Sure, I may need to use my car more than the average person because of my disease, but that doesn't mean I have to drain all of the earth's resources. I can still reduce, reuse, and recycle.</div>
<div>
<br /></div>
<div>
<b>Stewardship</b> - OK, there are some volunteer activities I used to do that I can no longer do. My days of walking a 5K to raise money are over. And I'm not the right person to call up when it's time to chaperone a field trip. But there are still ways I can serve my community. Ushering a church service doesn't work well for me, but I am part of the prayer ministry. I'm not comfortable committing to regular committee participation, but the head of our health ministry knows that I am a resource. I'm not the most recently diagnosed person in my congregation, and I'm willing to answer questions, offer support, listen to venting...whatever's needed. I let that slip when I went to the hospital, so now I'm going to prioritize these relationhips again.</div>
<div>
<br /></div>
<div>
I've also been learning about online opportunities to support causes that only require clicks on the computer. On Facebook, I virtually volunteer at animal shelters and foster dogs. After earning a certain amount of points, then advertisers contribute food to animal shelters. I also go the <a href="http://www.thehungersite.com/">The Hunger Site</a>, where advertisers donate to hunger organizers if I click daily. From that site, I can also get to their other sites to support literacy, autism, veterans, and a number of other causes.</div>
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I've been told over and over that I'm more than my MS. These are just a few of the ways that it's obvious to me.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-52166988239938326132012-04-28T22:29:00.001-04:002012-04-28T22:29:54.150-04:00Ashamed To Admit<br />
<div class="MsoNormal">
I am so ashamed of something I did earlier this week. I cut off another driver to get a handicapped
space.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I didn’t mean to, honestly.
I was coming up to the space on the right, and I believed that the
driver on the left was only waiting for the driver in front of her to move so
that she could find a parking space. I
had no idea she was planning to park in that one and only handicapped space
near the café. It wasn’t until she
limped into the restaurant that I realized my mistake. I had selfishly assumed that no one else
would have use for that space, and I took it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In that moment of realization, I had so many memories flood
over me. I thought about all of the
frustration when I pulled up at the drugstore and saw that the closest
handicapped space was occupied by a driver sitting in his car waiting for
someone inside. I thought about all of
the times I’ve been unable to use the sloped pavement areas to avoid tripping
over a curb because it’s been blocked by a car in the fire line. I thought about emailing the principal at my
sons’ school because the handicapped spaces in front of the after-school care
had been filled up three times in a week by drivers parked illegally.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t know how those drivers felt when they saw me limping
past their cars. I do know that when I
saw someone I had wronged, I felt very small.
I was also ashamed of my arrogance, that feeling of owning that space
that allowed me to ignore the person in need who had been waiting for it.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I sometimes make the mistake of thinking I’m the only person
dealing with a setback, or dealing with a physical burden, or having a bad
day. I need to get over myself and
remember that I’m not the only occupant of this planet and take a moment to
remember how my actions are impacting others.</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3679428.post-28139242147365776672011-12-14T01:12:00.003-05:002011-12-14T01:12:39.478-05:00Must Be the Shoes...I've never considered myself a slave to fashion. When it's come to wardrobe, I tend toward the comfortable, with the occasional nod to the quirky. I haven't been all that interested in which designer's name was on the tag.<br />
<br />
But I've come to understand and appreciate the fascination that some women have with shoes.<br />
<br />
Before I started having mobility issues, I didn't give much thought to shoes. If it was comfy and not butt-ugly, I'd wear it. But when I started having mobility issues, I started paying a lot more attention to my shoes. Even the slightest heel added a degree of difficulty to the sport of walking that I was just not prepared to handle. Then the physical therapist recommended a foot up, a device to reduce the frequency of foot drop. Most people can walk without having to think about keeping their toes out of the way Their heel hits the ground, then the toes follow. As many of us with MS know, foot drop is that not-fun-at-all tendency to not lift our toes, which can lead to falls. The foot drop is a device you strap around your ankle and connect to your shoes to help lift your toes out of the way when you're walking. Unlike a lot of mobility aids, the foot up is a relatively inexpensive solution. The biggest downside? You can only use a foot up with laced shoes.<br />
<br />
So bye bye all those cute little flats with no laces. So long sandals. Sayonara flip flops. Dress shoes? Ha. But walking without falling interested me more than those cute shoes, so I did a long-overdue closet purge. I was on a quest to find shoes that were comfortable, cute, and had laces. I found a few pairs, and most of them were comfortable enough that I could wear them for more than 4 hours without grimacing in pain or wearing blisters on my Achilles tendon.<br />
<br />
But that got old real quick. And those shoes that I had thought were cute looked clunky and boring pretty fast. They certainly weren't flattering with dresses, and except for one sassy pair of Keds, they looked silly with shorts. I felt like the ostracized kid in old sitcoms who walked around with the corrective shoes and the retainer that swallowed her head. I hated looking down at my feet and seeing those damned laces. And do you know how hard it is to tie shoes when you have spasticity in your legs? I'm supposed to be able to securely tie a shoe when I can't even bend my knee to reach the shoe? But of course, an untied shoe was a danger from which not even a foot up could save me.<br />
<br />
So the new approach is screw the foot up. It makes it harder for me to go up and down steps because of the way the brace secures around my ankle, so in some ways it was making my walking worse. Then I treated myself to a couple of pairs of new shoes without laces. The first pair is a cute black shoe that replaces the laces with zippers. It's easy to get on and off my foot (my kids can even zip the shoes!), and it looks pretty darn cute with a nice pair of pants. The other pair has velcro to keep it secure on my foot and looks much sleeker than the laced shoes. Both are easy to put on, even when the leg wants to stiffen up and stick straight out. How when I look down at my feet, I smile.<br />
<br />
I still can't wear a sassy little pair of sandals. But at least I don't have to try off the prison matron shoewear look anymore. And even though I still scuff a little, it's easier to manage steps in the new shoes sans foot up.<br />
<br />
There's no rule that says I have to abandon style just because I have MS.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-61133555318495933472011-12-06T23:45:00.001-05:002011-12-07T09:04:22.955-05:00Ignorance is CruelWell-intentioned but ignorant people can be so cruel.<br />
<br />
One of the biggest challenges of MS is the "invisible" symptoms. People don't see what's causing them, people don't understand them, but it's amazing how much they think they know about how to fix them.<br />
<br />
Take spasticity, the muscle stiffness and spasms that can cause your leg to lock. It's not uncommon for me to try and bend my knee for my leg to instead make my leg straighten out and not budge. In the winter edition of Momentum, the magazine distributed by the National MS Society, neurology professor Bruce Cohen explains that spasticity is caused by spinal cord damage. The common recommendation is to alleviate the pain and stiffness of spasticity is to exercise through stretching. I've worked with a physical therapist (who has a doctorate) to develop a stretching and strengthening routine that I need to follow regularly. This physical therapist (did I mention she has a doctorate?) has done presentations on MS exercise programs in which she emphasized the importance of strengthening, stretching, balance, and cardio exercise.<br />
<br />
It's amazing to me the layman response I've gotten from people close to me regarding my spasticity. I made the mistake of telling my family that my neurologist wants me to exercise more. Their response has been to hound me for not spending enough time at the neighborhood fitness center and get on the elliptical machine. When I tell them I need to adopt a stretching program, they tell me "that's not what your neurologist meant when he said exercise". Some of their other comments:<br />
- "You bend your knee some of the time. What are you doing differently, thinking about it?<br />
- "You need to go down to the fitness center and work with those trainers there. They'll know what you need to do." (Have I mentioned that I've worked with a physical therapist who has a doctorate?)<br />
- "You need to start exercising regularly before you become a cripple."<br />
- "All it takes is some willpower." (Would they tell that to someone in a wheelchair?)<br />
- "Stretching's not going to do anything for you." (Yup. All of those neurologists and physical therapists are wrong.)<br />
<br />
I try not to let their comments get to me - after all, they do mean well. But their ignorance hurts. Deeply. It's hard enough to stay motivated through the setbacks and the pain and the personal battles. But when the people you love - and who love you - are saying such hurtful things, it's tough to deal with it. These people are supposed to be supporting you, and truly think that they are supporting you, but instead they're throwing up even more roadblocks.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-23730526143184583672011-05-17T08:02:00.002-04:002011-05-17T08:17:55.601-04:00MS can require a lot of time and attention, given all of the medicines, tests, medical appointments, physical therapy, etc. that is involved in treatment and wellness efforts. But when it comes to health issues, we have to be more than our disease. We need to remember that in addition to treating our disease, we still need to handle those "normal" health issues that everyone faces. By proactively addressing our total health, we will be in better position to address our MS-related issues. It's important to stay current on non-MS-related appointments, tests, etc., and staying current on those issues will help us managing our total health, which in turn helps us to deal with MS.<div><br /></div><div><b>Appointments</b> - Your neurologist should not be your only doctor. Have a primary care physician and keep that doctor in the loop on your treatment. Annual physicals can help you to understand your overall health and changes that could improve your life overall. And as a woman, I need to schedule my appointments for appropriate gynecological care. Don't neglect your eyes - make sure you're having regular eye exams. (<i>I've let that one slip for too long....but I've got the checkup scheduled.</i>)</div><div><br /></div><div><b>Tests</b> - There are other tests we need besides all of the fun (NOT) tests we go through in our MS treatment. Since my grandfather died of colon cancer, I've already had a a colonoscopy, and I know when I'll need to have my next one. As a woman, the annual mammogram is an important part of my health treatment - just had one, and they even scheduled my next one so that I'll have no excuse. My doctor also wanted me to get a baseline chest x-ray. And since my family has a history of high cholesterol, I get tested regularly so that I don't forget that I have to manage my cholesterol.</div><div><br /></div><div><b>Immunizations</b> - Just because we grow up, and just because most of us take injections for our MS, we're not exempt from having other shots. Do you know when your last tetanus shot was? And do not forget the flu shot - folks with MS don't handle getting fevers well, so getting a flu shot can help you avoid a terrible bout with MS symptoms.</div><div><br /></div><div>We are more than our MS. We can't neglect our overall health while we focus on our MS. And when we manage our total health, we are better able to handle the challenges MS presents to us.</div><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-13421698262596151372011-04-25T23:04:00.003-04:002011-04-25T23:47:49.688-04:00Today started out tough. I had to use the bathroom in the middle of the night, and my legs were not cooperating. I managed to get in there without falling, but I was glad that I've been wearing a Poise pad to bed so that I don't have to worry about bladder urgency issues. I was concerned about trying to climb back in bed, so I headed out to the couch. My legs were so stiff and uncooperative that I decided not to go to work before my physical therapy.<div><br /></div><div>I did NOT want to go to PT. Then I realized how silly that sounded. The whole reason I need to go to physical therapy is because I am finding basic functions like walking to be a challenge. If I wasn't having trouble, then I wouldn't need to go to therapy. During the appointment, I told my therapist that I was doing backflips in my head because I was thrilled how well I was doing during the meeting. I felt it afterwards! </div><div><br /></div><div>We also realized at PT today that my walking is worse than it was and that the foot-up has outlived its usefulness for addressing my foot drop issues. So now it's time to move on to the next tool in the tool chest, the AFO (ankle-foot orthosis). I'm going to be fitted for a brace to address the weakness in my ankle and help me more with the foot drop. The therapist had worked with me during my last round of PT and wanted to try and keep me from developing bad walking habits. I told her I'm already showing trends to one of them, where I swing my leg to the side instead of bending the knee and walking properly. So we're thinking it would be a good thing to get more aggressive in dealing with my foot drop before I've ingrained those bad habits and can more easily retrain myself to walk correctly.</div><div><br /></div><div>It was also the first day of my IV solumedrol infusion. Yes, I take performance enhancing steroids. It's one of the favorite parts of my therapy, and no, I'm not being sarcastic. The worst part of the whole thing is getting an IV, and I've had enough needles that I'm not bothered by that. Yes, the steroids can leave a metallic taste in my mouth, but I can eat the Lemonheads candy I like to keep that taste out of my mouth. And my appointments are at a time that will likely prevent me from getting a heated massage chair to sit in during the treatments. But other than that, it's not bad at all. I get to relax in a recliner for an hour without hearing kids saying, "Mommy, Mommy, Mommy" or asking me every two minutes to get up and get them something. The nurses are great, and there are normally some pleasant people getting infusions who offer pleasant conversation. Today was terrific - the other women in the room were funny, chatty, and made the time pass quickly. Sheila made a point of finding out everyone's name and made a friendly comment to everyone else in the room to make them feel included (even if they napped through most of the chatter!). The nurses enjoyed the group too - they told us that the morning group had been quiet, and they enjoyed a lively bunch like us. After the infusion, I felt so much better, and there's already a noticeable improvement in my walking.</div><div><br /></div><div>Tomorrow's a calmer day - I only have an IV appointment. The next PT is on Thursday. I want to make sure I get my home exercises in tomorrow, since that will help me get stronger. The one thing we all agreed on during our infusion chatter was that rolling over and letting multiple sclerosis win was not the choice for us. Maria is in her fifties and loaded with energy. When she started water aerobics, she could barely handle 5 minutes, and now she does well over an hour at a time. I did water aerobics in my 20s, before I was diagnosed with MS, and I was worn out after an hour, so I am so impressed by Maria's exercise regimen. Sheila talked about how she walks around her house without any aids and makes sure she regularly uses the stairs, since she knows that giving up on doing stairs would make it harder to use the stairs in the future. </div><div><br /></div><div>They reminded me of the comment I made to my husband Tim early in our marriage - he signed up for better or worse, but he did not sign up for me rolling over and giving up. Even if I were tempted to give in, I could not subject him to a life like that and had to fight for him. And now that I have two adorable sons, I want to do as much as I can with them. I may not be able to run, but I can still do so much with them. I'm not the best field trip chaperone, but I did a terrific job reading to my older son and some of his classmates when we had a surprise reading event for the kids earlier in the year. </div><div><br /></div><div>My younger son made the cutest invitation for his class Mother's Day lunch, and I will not miss that. I'm just wondering if this will be the third year in a row that my kids make me look good at the Mother's Day party. Last year, Dylan told his classmates that he likes playing on the Wii Balance Board with me, so the other moms thinks I'm an avid exerciser. The year before, Jason's card said that I'm prettiest when I smile, prompting the other moms to say, "Awwww". My boys remind me that they don't care that I have MS, they love what I can do for them and don't get too caught up in my limitations. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-444179934015228512011-04-24T15:15:00.004-04:002011-04-24T15:34:35.034-04:00Well, it's been a week since the less than favorable neuro appointment, and it's been a hectic and tiring week.<div><br /></div><div>Physical therapy has been, for the most part, good. I like my physical therapist, and unlike some of her clients, I do not refer to her as a physical terrorist. The good news is that physical therapists can teach exercises that don't require a lot of specialized equipment. The bad news is that those exercises take away so many of the excuses on why I'm not fit. It's all too obvious that the only person I have to blame is myself. I haven't been 100% perfect on getting my stretching done everyday. It's demoralizing to watch my 5 year old breeze through exercises that are a struggle for me. Since I'm out of practice, I'm sore, and when you're sore, the last thing you want to do is continue doing the things that make you sore. </div><div><br /></div><div>The week has left me exhausted - I've spent Easter Sunday napping and resting on the couch instead of in church and with family. Hopefully, I'll be able to get a better grip on the fatigue in the upcoming week.</div><div><br /></div><div>So, what's up this week? I've got 2 more physical therapy appointments this week, and I get to follow up on doing he exercises at home every day. This is also the week for five days of IV solumedrol infusions. While that makes my schedule crazy, I'd be lying if I said I wasn't looking forward to relaxing in the IV chair. </div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-70192168719669367092011-04-15T21:53:00.002-04:002011-04-15T22:37:05.509-04:00It's hard to live with MS. One of the challenges is remembering that we're not the only ones struggling to live with MS - our caregivers are challenged too.<div><br /></div><div>As a caregiver, my husband normally qualifies for sainthood. He goes above and beyond when it comes to taking care of the house, taking care of the kids, and taking care of me. But he reached his "had it" point this week. He has needed help, but since I haven't been doing well when asked, he hasn't gotten the help from me, and it was all building up until he felt overburdened. And since so many MS symptoms are invisible, he just couldn't reconcile my comments about not feeling well with what he saw. For him, that situation was incredibly frustrating. There were harsh words and tears on both sides, since we couldn't see a middle ground.</div><div><br /></div><div>Then I had a neurology appointment this morning, which confirmed that there is reasons to suspect that I've had a relapse causing the problems I've been experiencing recently. Normally, my neurology appointments are quick, followed up with a quick blood draw for some labwork and making my next neuro appointment in 3 months. Not so easy today. Instead of breezing through the tests, I had to repeat a few to see whether I could do better if I really, really concentrated. The discussion of how I've been doing since the last appointment included a lot more in-depth questions regarding walking, number of falls, bladder function, vertigo, etc. I had to go into a lot more detail than usual. </div><div><br /></div><div>Then it was time for next steps. The self-proclaimed human pharmacy was given another bottle to add to the overflowing medicine cabinet. Baclofen is a drug commonly used by MS patients and others experiencing spinal cord problems who need to address spasticity. So that's three more pills a day to add to the already extensive list of pharmacology:</div><div>- 7 am - Ampyra, Baclofen, Lexapro</div><div>- Breakfast - Multivitamin, Calcium + D, Niacin, Cranberry, Fish Oil</div><div>- 11am - Baclofen</div><div>- 2 pm - Mirapex</div><div>- 3 pm - Baclofen</div><div>- 4 pm - Ibuprofen on Rebif days</div><div>- 7 pm - Ampyra, Mirapex, Calcium + D, (and can't forget Rebif 3 days a week)</div><div>In case you're wondering, yes, I go to a Pharmacy with a rewards program. Gotta get something back out of this, don't you agree?</div><div><br /></div><div>So normally at check out we're just talking about setting up my next appointment. We did that, but also scheduled time with both the physical therapist and the MRI tube next week. I think my therapist would be pleased to know I'm looking forward to seeing him a lot more than that blasted tube. At least I only have a few days to dread the tube. As a claustrophobe, I am glad that there is such massive research supporting the diagnostic benefits of MRI and the usefulness of this technology in the treatment of MS, or it would really piss me off to get in the stupid thing. Then again, the IV valium helps to make it a more palatable situation, and it sure counts as a good excuse for not cooking that night.</div><div><br /></div><div>I'm still not done today though. In addition to the usual labwork, it's time to check for antibodies. Has my body decided that the interferon I jab into my body three times a week isn't doing the trick anymore? We checked last year, and the answer was no, this drug is still a good solution for me. Given the suspected relapse, it's time to ask the question again. I just hope I don't have to jump through all of the insurance hoops this time like I did last year. They originally rejected my coverage claim, which had me freaking out at the prospect of shelling out $1000 bucks for the test, but I successfully appealed. </div><div><br /></div><div>I also get to look forward to scheduling 5 days of solumedrol infusion. That may sound bad, but it's actually one of my favored parts of treatment. Sure, I get jabbed with IV needles 5 straight days, but then I have an excuse to veg out in a heated massage chair for an hour. I usually take advantage of the chance to catch up on a good book. Plus the IV nurses are awesome and do what they can to make the situation as tolerable as it can be. And the other infusion inmates are a quite friendly bunch.</div><div><br /></div><div>Then all was left was giving the details to the loved ones. Had to call Mom, since she is my friendly chauffeur on MRI day (since Valium and operating heavy machinery don't mix....you can get into heavy machinery, just not drive it). I had texted hubby about the disappointing results, but he called to get a breakdown once the appointment was done.</div><div><br /></div><div>There's nothing like a less desirable diagnosis to bridge the gap between a frustrated patient and a frustrated caregiver. He tenderly explained to me that when he sees me, he doesn't see a disease, he sees the girl in the sexy red dress that he fell in love with. My heart can't help but ache for him - if I have a hard time dealing with this unpredictable disease, how tough is it for him to deal with my having such a sneaky and volatile condition? I know I struggle with not being identified by my disease and minimizing the limitations it places upon me, so how can I criticize him for doing the same? Our poor caregivers have to walk the fine line of helping us while we need them yet giving us the room we need to do what we can for ourselves. I know it's confusing for me to balance what I can do vs. where I need assistance, so it makes sense that he struggles with the same challenges. The challenge he's struggling with is helping where needed while still thinking of me as a person first, not a disease. </div><div><br /></div><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-21041643865282356822011-04-09T22:01:00.003-04:002011-04-09T22:27:12.720-04:00I'm still here, and I'm still fighting.<div><br /></div><div>I use my cane more often these days. Don't get me wrong, I'm still fighting...I'm just picking my battles more carefully. When I have my cane, I've got one more thing to help me avoid falling when I go off balance. And since my husband listened when I told him I want a cool cane, it's a touch of style. Ordinary canes can look sterile, but my multicolored one adds a touch of flair. Plus, it gave me an excuse to buy a cute Vera Bradley bag I wanted, since the bag has outside pockets that are the perfect size for a collapsible cane. Now I can keep the cane nearby in case I need it, but I look good in the process.</div><div><br /></div><div>I also have a handicapped placard now that I use at work and occasionally when I'm out and about. The parking rules changes at work, and I needed to have the placard to be allowed to park on the first floor of the parking deck. At first, I was grumpy about having the placard, but I'm so grateful to have it now.</div><div><br /></div><div>The common thread to both of these tools is energy conservation. Fatigue is an enemy for many of us who have MS. As a working mom, I'm even more aware of the need to make sure I'm using my energy where it matters. So yeah, I'll use a scooter in the supermarket or on vacation in Disney, so that I have the energy to get things done and have fun. I'll read books and listen to webinars that have tips for managing my fatigue so it doesn't manage me.</div><div><br /></div><div>I could focus on what I can't do since I have MS, or focus on what I can do. Make lemons out of lemonade. So I'm not the best choice for chaperoning a school field trip. But that didn't stop me from reading to my son's class (and since I love using silly voices when I read stories out loud, I was quite popular with the kindergarten crowd). When we went to Disney, I wasn't running around with the parks like a crazy woman, but I joined my younger son on his first kiddie coaster ride.</div><div><br /></div><div>I can even turn some parts of my conditions into advantages. Any parent can tell you how chaotic life with kids is and how many demands are made on your time to volunteer or get involved in extracurricular activities. It's easier for me to be selective on what I will or won't volunteer to do, but there are still plenty of ways for me to get involved. And since I don't want to overextend myself, I'm less likely to overcommit my kids. I know some parents who have their kids in a different activity every night and (at least) one on weekends. I just don't have the energy to shuffle them around as much as I might be tempted to do, which I think is good for them too. </div><div><br /></div><div>I did some physical therapy in the fall, and my therapist said that I'm pretty high-functioning for someone who was diagnosed 9 years ago. But I know I could be doing better if I got some good habits going and took control of my health. The biggest challenge is pushing ahead even when I'm fatigued.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-85951739088665236022010-08-11T07:50:00.003-04:002010-08-11T08:02:12.084-04:00FUMS.<div><br /><div>That's my new mantra. I've realized that I've been too nice when it comes to MS. I haven't complained, and I haven't taken charge. MS doesn't play by the rules. It doesn't take turns, it cuts in line, and it will eat the last chocolate chip cookie on the plate.</div><div><br /></div><div>In the early days of MS treatment, patients were expected to rest, to play the waiting game while MS stole what little vitality they had left. Now the advice is different - exercise and stay active if you want to still be active.</div><div><br /></div><div>Somewhere along the line, I forgot how to fight. I forgot how to get angry enough to act. MS exploited that opportunity perfectly. While I was making nice, MS was helping me become an out of shape victim who falls regularly without a cane.</div><div><br /></div><div>So I'm letting myself get angry. I'm encouraging myself to fight back. When I want to swear at this disease, I'll swear at this disease. And my new mantra can be summed up in 4 letters - FUMS. Sometimes, I'll even yell out what the F stands for.</div><div><br /></div><div>Today is step one in the plan to take back my life. I've got an appointment with a physical therapist. My goal is to put together an exercise program that will help me get back in shape. I have MS, but if I'm taking an active role in getting myself in the best shape I can be, then I'll be better equipped to fight it.</div></div><div><br /></div><div>You may have won the first set of this match, stupid disease, but look out for me now. I'm going for broke in this second set.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-27658995141540181032010-08-06T22:16:00.003-04:002010-08-06T22:31:43.783-04:00It's been over a year since my last post. Out of sight, out of mind. At least, I wish that was the way MS worked. The biggest thing I've learned is that I can pretend that I don't have MS, I can ignore it, but it's going to make its presence knowne whether I want to acknowledge it or not.<div><br /></div><div>Living through a period with no exacerbations is not necessarily a sign that the disease isn't having an impact on your life. SO my last two MRI's look great.The annoying part of the illness hasn't been the attacks, it's been the day by day deterioration. It's so subtle, when you let yourself give into the fear and play too cautious. If you spend too much time playing it safe, it's not long until that's all you're capable of doing.</div><div><br /></div><div>It's been a tough two weeks. I've been using my cane more often, but two times I try to walk without it, I fall. Publicly. Embarrassingly. Just when I've thought things were fine, I land on my backside. I've had to explain to way too many people why I have a cane. I wasn't keeping my illness a secret, but I wasn't publicizing it. And then the change in parking procedures at work makes me realize that it's time to get the handicapped placard. Damn it, I'm not handicapped. </div><div><br /></div><div>I'm pissed. That's a good thing. Instead of sitting back and letting this illness continue to subtly rob me bit by bit, I'm fighting back. I have an appointment next week with a physical therapist to work on my gait and to start an exercise program. After all, not all fatigue experienced by MS sufferers is because of the MS. Some of the fatigue is caused by being out of shape. Just because I have MS, that doesn't mean I'm immune to the issues that healthy people deal with too.</div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-71640825219155252362009-03-22T13:03:00.004-04:002009-03-22T13:06:47.462-04:00I'm watching the NCAA Tournament, and I'm watching a feature on Siena's Kenny Hansbrouck and his dad, who has MS. I was glad when they won their first round game, and I am going to be cheering like crazy for them in round 2.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3679428.post-4973488060013082522009-03-22T12:36:00.002-04:002009-03-22T12:44:00.556-04:00Even though I'm doing a lot better than many people with MS, I still have to deal with the ugliness of this disease. Today's word is constipation. I warned you folks, this disease ain't pretty. It presents a cruel dilemma: on the one hand, drinking plenty of fluids can help you prevent dealing with constipation. But MS also likes to play with your bladder, too, which can make you hesistant to keep pouring liquids into this quirky body part. So which is better...wetting your pants or having cramps, noises, and smells?<br /><br />So now the emergency kits has a new addition. I've got the spare pants for the bladder issues, and the laxatives for the bowel. Since it's a weekend, I read up on the MS Society site for ideas on which ones to try.<br /><br />I know, I know - this is not a pleasant topic. But when you're talking about MS, not many topics are.Unknownnoreply@blogger.com0