Demyelinated not Destroyed

With the end of summer fast approaching, parents everywhere are beginning to turn their thoughts to the back to school madness that accompanies this time of year. Along with the purchase of school supplies and clothes, many parents take the time to make sure their children are up-to-date on their vaccinations. For those living in my home state of Texas, a new vaccination schedule has parents especially concerned with the subject.

Now, I know the debate over whether or not a child should receive vaccinations is often an emotionally charged, heated one. Parents on both sides tend to be rather passionate about their decision and rightfully so. That is why this post isn’t about which side is right and which side is wrong. This post, like many others on Demyelinated Not Destroyed, is about education.

I found out about the new vaccination schedule from an e-mail that was sent from my children’s school. I have to admit, I was pretty annoyed when I read it. I don’t mind that the school sent the e-mail. I’m sure many parents appreciated it. What I do mind is the total lack of any information concerning the fact that parents have the right to waive vaccinations for their children. It also failed to mention or give a link to a website that lists the various side effects the vaccines have.

I firmly believe that if someone is going to go to the trouble of listing a vaccination schedule, they need to include information on the potentially serious side effects or a link to a website that houses that information. Most parents sincerely want to do what they think is best for their child. How can they when they don’t have all of the facts before they make that decision? Thankfully the internet has made it easier for parents to research such things but the onus shouldn’t be on them to seek it out.

Vaccines can cause permanent damage to someone. The flu vaccine has been known to trigger Guillian-Barre Syndrome or GBS which can be downright deadly. Some of them aren’t even all that effective. There are reports that the varicella vaccine is only about 70-80% effective. My oldest child had it and still caught the chicken pox eight months later.

The flu vaccine is even worse at about 20%. Many people don’t realize that in order for the flu vaccine to be ready on time for flu season, doctors have to begin work on it the year before. The flu virus replicates rapidly. It can also evolve into different strains almost as fast. This means that doctors working on the flu vaccine have to basically guess which strains to focus on and how it’s going to evolve from one year to the next. Since guessing is far from an exact science, they often get it wrong.

It is true that the likelihood that a child will develop a serious side effect from a vaccine is slim. Still, parents need to sit down and seriously consider how they would feel if their child suffered one of the more debilitating side effects that vaccinations can cause.

Before my youngest began school last year, my husband and I did just that. While my oldest children received their vaccinations on time, our move to a new state and the worsening of my health made it difficult for us to stay current on my son’s. After doing as much research as I could on the vaccinations he still needed and my CIDP, we sat down and discussed the pros and cons of getting him caught up on his vaccinations and how we would feel if he experienced a serious side effect from them. Ultimately, we decided the risks outweighed the potential benefits at this moment in time. Should that change, such as if someone in the community developed measles or polio, we won’t hesitate to get him vaccinated. Once he’s old enough to understand all of the risks and benefits involved, we are going to let him make the decision on whether or not he wants to get vaccinated.

The decision we made may not be right for you and that’s perfectly okay. What’s important is that you do some research and a heck of a lot of soul searching before you make that decision. In the end, I am neither for nor against vaccinations. I simply want people to be educated about them before they get their child vaccinated.

Since vaccinations are all about creating an immunity to a virus or disease your body hasn’t encountered on its own, you might want to check out the book “Defending Your Health Naturally “. As the name implies, it’s an alternative medicine book that aims to boost your immune system, decrease pain, increase energy, provide ways to reduce stress, and detoxify. You can read more about it at the link below.

Get copies of Demyelinated not Destroyed sent straight to your e-mail or on your RSS Reader ! Subscribe today! Questions or comments can be left here or e-mailed here.. If this post was helpful to you, please forward it along to your friends.

Meet Rum Tum Tugger or, as he is commonly known around my house, Tugger. Tugger is a beautiful, two year old, blue tabby/Abyssinian mix who adores playing with water. What, you might ask, does Tugger have to do with my blog about demyelinating diseases? Quite a bit, it seems. Tugger is the main reason why I have not posted in awhile.

You see, one night, I fell asleep on the couch, curled up around my laptop. I hadn’t intended to fall asleep on the couch but it has been known to happen from time to time when my fatigue gets particularly bad. I was awoken from a rather deep sleep by a feeling of being wet. After the initial confusion of waking up wet, on the couch passed, I noticed, much to my horror, that the nearly full glass of water I had on the end table near the couch had been knocked over. The river of water ran down the table, onto me, the couch, and my laptop. Who do I see swaggering away? Tugger, quite pleased with himself, I might add. Needless to say, my laptop was hopelessly fried.

I had recently done a back up of my laptop, thankfully. I didn’t lose many files because of it. I also have a back up laptop but the thing is roughly five years old. It’s barely able to run more than one program at once nowadays. With the heavy system requirements most browsers have now, getting online and staying online for any length of time with it is tricky.

I have a new laptop now that I absolutely love! It’s faster than the one Tugger killed for me, which is always nice. I’m planning on getting back into the groove of a regular posting schedule. It might be a little spotty for the next couple of weeks but please bear with me. If there is anything anyone would like to see covered in a post or any other way I can help you out, let me know!

I want to wish all of my readers and those who happen upon my page a wonderful Christmas! On this busy holiday, may you be reminded of what is truly important: family and friends. Take time to love, time to laugh, and time to rest and be refreshed by those you hold dear.

Most of all, take time to help those around you who need it. Times are hard for many families this year. While we may not all have money to give, we all have the gifts of love, time, and talent. As 2008 becomes 2009, find a charity who supports a cause you believe in and find out ways you can help in their mission. Even an hour once a month can do wonders for the many charities out there. In helping others, you will find that you are really helping yourself.

And now, a Christmas poem. May you hold it’s message close to your heart all year through.

The True Spirit of Christmas
by Marajo Tenderass

Lots of people
Crowds everywhere
Rushing and pushing and shoving,
Going nowhere.
It’s Christmas time again
Have to get all those things done
Hustle, bustle, quickly,
We must beat the sun.
Must get this and must get that
Maybe this nic, maybe that nak
When did it happen?
When did we lose track…
It’s a race, yes it is
We are running, yes we are
But lets not forget
Before we get too far-
What is really really important
Doesn’t take much to figure out
Take time to love
and love from the heart.

This time of year tends to get hectic as the holidays have a habit of bringing together loved ones and all of the the social events that go along with them. While I have had some of that sort of busyness over the past few days, I’ve also had other things requiring my attention.

Last Wednesday, I had to make a trip to the doctor to get antibiotics for a sinus infection.

Last Friday, I had a neurology appointment. The numbness, tingling, and reflexes are getting worse but my balance and strength are still doing well. I learned that sinus headaches are now being considered migraines because they both irritate the same nerve. As can be expected, my sinus infection has been giving me bad headaches. Since I have a history of migraines in general, my neurologist sent me home with samples of several different migraine medications to try.

Last Sunday, I strained my ankle. I had been sitting at my computer desk, typing, for several hours. I have a habit of curling my legs up underneath me whenever I sit down. The numbness and tingling I experience constantly causes me to lose all feeling in my legs rather quickly when I do this. Usually when I stand up after sitting like that for awhile, the feeling returns fairly quickly once I start walking. That didn’t happen on Sunday.

I went to take a step with my left foot. My body moved; my leg moved; my foot didn’t. Essentially, I wound up tripping over my foot. I caught my balance fairly quickly and managed to make it to the nearby couch by sort of lunging at it. Looking back, I probably should have just let myself fall. Because I didn’t, I put a lot of weight on the top part of my foot, which is probably what led to the muscle strain. The swelling has gone down but I have to admit, I was shaken by the experience. It’s the first time something like that has happened to me. I hate being reminded of what my limitations are.

Earlier today, I had an interview at one of the many nursing homes in the area for a CNA position. I don’t presently hold a CNA certificate, however they are giving free classes and will pay for the certification exam, which is awesome. The downside is the only available shifts are in the evening and overnight which would seriously restrict the amount of time I have to spend with my husband and children. So, I have some thinking to do over the next several days about whether or not the job would be right for me.

I had the beginnings of a migraine when I got home, so I decided to take one of the samples my neurologist had given me. I also took some Benadryl at the same time because my allergies were starting to act up. Boy, am I ever glad that I did! The sample I took had naproxen in it. One of the brand names for naproxen is Aleve. Naproxen is also derived from aspirin. I’m deathly allergic to aspirin.

About a half hour later, I was on the phone with my husband when my inner ear and scalp started to itch really bad. I mean, insanely bad. After a moment, it registered that I had had a similar reaction to aspirin several years ago. Immediately, I went to check the sample and discovered that naproxen was a main ingredient. Right about then, I started to cough, which is my body’s way of telling me that I’m having an asthma attack. I took some more Benadryl in an effort to counter the allergic reaction. Thankfully, it worked.

I know I should have gone to the hospital but I was home alone. Driving myself to the hospital wasn’t an option under the circumstances and I was loathe to call an ambulance unless I absolutely needed to. If the added Benadryl hadn’t worked, I would have.

I’m extremely careful whenever I buy over-the-counter medications. I know all the various names for aspirin and it’s various derivatives. I always scrutinize the ingredients list to make sure it’s safe for me to take. I didn’t check the sample because I thought my doctor would take my allergies into account when giving me the samples. Although, now that I’m thinking about it, his medical assistant is the one who got the samples for me. At any rate, I’m definitely going to read over the ingredients of any samples given to me from now on to prevent something like this from happening again.

Hopefully, that’s all the excitement I’ll have for this week!

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International

As upbeat and chipper as I try to be for everyone, I would be lying if I said I don’t occasionally get saddled with my own feelings of depression and pity parties, particularly where my CIDP is concerned. Today was one of the days where I’ve been feeling particularly down for a variety of reasons, most of which have to deal with my disease. Then, I came across this picture:

For those who may not be able to see the picture, it’s of a simple butterfly on a blue background and says the following: Like the butterfly, I have the strength and the hope to believe, in time I will emerge from my cocoon… Transformed.

I have long loved butterflies for what they represent. The thought that a fuzzy caterpillar can turn into a beautiful being with gossamer, multicolored wings and the ability to fly is nothing short of miraculous. If such a wonderful thing can happen to such a lowly insect, then imagine the change that can happen in us.

We can’t always control the changes that happen in us. I know I never asked for nor wanted to have CIDP. But, we can control the way these changes affect our spirit. Our bodies may be weak but no one has to tell our hearts that. Our hearts can soar to the heavens… right along with the butterfly.

Read the Blog of the Month - CIDP And Me

Help spread the word, fund research for a cure, and support others by donating to the Charity of the Month - GBS-CIDP Foundation International

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Today is another one of “those” days. It’s the kind of day where I’ve just felt exhausted all day long. Every movement feels as if it’s being done through molasses. It’s a serious chore to do much of anything aside from sit on the couch and look at my laptop.

I got to bed early last night, for a change. In spite of getting about 10 hours of sleep, I woke up feeling tired. I took a nap for a couple of hours. Now I’m mentally alert but still physically drained. It’s annoying because I have a lot of things I need to get done but can’t because I don’t have the endurance to do them.

It’s been about a month since I received my last IVIg treatment. I think that’s playing into how I’m feeling a lot. I can tell the treatment is starting to wear off because my tingling and muscle spasms are getting bad again. Soon, the dropping things and tripping will start.

Maybe I should take my toe ring off again. The last time I started tripping over things, I kept bashing the top of my foot into one of the steps in my house. It tweaked the silver of my toe ring and led to some bruising on my toe. Or maybe I’ll just leave it on and chance it. I’m feeling adventurous!

It’ll be another month until I get my next treatment. Things should be getting exciting around here again. At least I still have the reflexes to jump out of the way of steak knives when I drop them.

Quite a lot happened during the month of November. I received my first IVIg treatment at home, participated and won NaNoWriMo, and auditioned for a local play. Unfortunately, all the busyness of my personal life kept me from updating like I wanted to do.

Now that November is over, I plan on updating more frequently. Hopefully, my recent acquisition of Dragon NaturallySpeaking will help in that regard. I’ve been collecting articles and information to post so look for some of that in the coming days.

I’m also interested in answering any questions or concerns that those in my reading audience might have. This blog exists for all of you, not me. My desire is to create a place where those living with demyelinating diseases can get the information and support they need to give them hope for the future and make their lives easier. I simply can’t do that without you.

I hope your Thanksgiving was wonderful!

What is strength?  What is weakness?  I’ve been having to ask myself these questions a lot lately.  Having a disease like CIDP can often challenge long held views and definitions of even the most innocent of words.

For the past week, I’ve been dealing with legs that have decided being weak and unsteady is the way to go.  The balance that I regained after my first dose of IVIg is now gone.  The toes on my right foot are injured from repeatedly stubbing them on the single step that leads up from my family room to my living room.  I’m trying to get up and move around in spite of my weakness and lack of coordination but I feel like I’m walking this tight rope between doing just enough to keep muscle atrophy at bay and overdoing it.  I know if I overdo it that my weakness will just get worse and I definitely don’t want that to happen.

All the while, this weakness in my legs has me thinking about what my future with CIDP could look like.  I don’t like thinking that I might wind up needing a cane or be in a wheelchair at some point in my life.  The cold, hard facts are that I’m 30 years old and I’ve just barely begun my journey with this disease.  I have three beautiful, wonderful children.  I want to dance at each of their weddings. Will I be able to?  Only time will tell.

I hate having to rely on others.  It’s something that I’ve had to increasingly do over the past week because of how my legs have been feeling.  But, I’ve come to realize that there is a strength in asking others for help.  There’s strength in knowing what your limits are and in being able to voice them to others.  I could certainly refuse the help and ultimately fall because of my own weakness.  Or, I could let my loved ones help me and we’d both be stronger for it.   As hard and as humbling as it may be, I’m choosing to let them help me.   I hope that one day, I’ll be able to return the favor.

I don’t usually put two “Living with CIDP” posts back to back but I had an appointment with my neurologist today.  Since I want to give everyone an accurate view of how CIDP affects my life, I think it would be helpful for me to blog about my various doctor’s appointments.

But first, a little background.  Dr. K is the fourth neurologist I’ve seen over the past five years.  I’ve been a patient of his for over a year now.  I was first referred to him by my family practitioner because Dr. K specializes in diseases that cause demyelination.  Dr. K is hands down the best neurologist I have seen to date.  I’ve spoken with some of his other patients and they all agree.  I firmly believe that if I was seeing a different neurologist, I would still be stuck in limbo-land and be without a diagnosis.

Dr. K was actually running on time today.  I think that’s the first time since I started seeing him for my CIDP that he wasn’t behind schedule.  While some people might get annoyed at a doctor running an hour behind schedule (which is common with Dr. K)  I don’t.  The reason why he runs behind is because he spends all the time he needs with each of his patients.  When I see him, I know I won’t be rushed out of the exam room.  I just bring an extra book or two with me to read while I wait.

Today was my second appointment with him after I received my diagnosis of CIDP in July.  It’s my first after receiving my first round of IVIg treatment.  So far, I feel pretty good.  This is the best I’ve felt in roughly three years.  The tingling and numbness in my hands and arms has drastically reduced.  The tingling and numbness in my legs has stayed fairly steady.  It’s the first time since my body decided it needed some demyelination that my legs have felt worse than my arms.   I’ve had a couple days of weakness this week that has me a bit worried.  Otherwise, it’s so far, so good.

We discussed when I should receive my second dose of IVIg.  It’s going to be tentatively scheduled for two months from now.  I’m going to receive it at home next time, which will be a huge blessing.  I can curl up on my couch and sleep, watch a movie, or read when I’m getting it.  The outpatient center I received my first IVIg dose in was nice but I’ll definitely be more comfortable at home.  Since I handled the first round of IVIg like a champ, I’m going to try to get my IVIg infusion over three days instead of five.  Doing so ups the chances of awful IVIg side effects like migraines and joint achiness but I’m willing to take the risk.  I can always go back to a five day infusion rate if I don’t handle it well.

One of the things Dr. K stressed to me today was that because of my CIDP, the demylination that’s been caused, and the various muscle damage I have, my endurance will never be the same.  I’ll tire more quickly now, something that I’m definitely aware of whenever I even slightly overdo it.  He told me to listen to my body and whenever I start to get shaky or feel weak to rest.  If I don’t, I’ll exhaust myself.

Even though I know Dr. K is right, it’s still hard to hear.  I’m 30 years old with three children all under the age of 10.  I want to be active in their lives.  I want to be a Room Mother and go on all of their field trips.  I want to sew costumes for the Christmas play or act as a coach for the sports teams at their school.  I desperately want to do all of these things but I can’t.  I have to carefully balance the things I need to do and the things I want to do.  If I don’t, I’ll push myself too hard and then I’ll be no good to anyone.  Thankfully, I have good kids who understand that mommy’s sick.  I just hate that they have to be understanding.

My next appointment with him is in two months although he did tell me to call if I started to get worse.  Still, all in all, Dr. K and I are optimistic that I’ll keep improving with time.

It seems like it’s been ages since I’ve updated. For that, I apologize. Life just has a nasty habit of creeping up on me from time to time and demanding my attention.

I had a different blog post in mind that I wanted to make tonight, but I changed my mind when I decided to take a peek at my blog stats for September and October. I’m glad I did because I think what I now want to post about is much more important than my original idea.

In looking at my blog stats, I noticed how many people that have made their way to my humble little blog about demyelinating diseases from search engines like Google and AOL Search. I looked over the search terms that people are using to find their way to my blog and I was struck by how many people there are out there that looking for answers. My heart breaks for you all. I’m struggling back tears as I write this.

I spent five years of my life looking for answers to what was going on with me neurologically. It’s so hard to know that something is wrong with you but you don’t know what it is. You feel so powerless. I spent so much time wishing for some diagnosis, any diagnosis, because with a diagnosis, I could start treatment and work on getting better. It’s even worse when you know you have a demyelinating disease but you don’t know which one. You know there’s nerve and muscle damage that’s being done to your body but you’re powerless to stop it because you simply don’t know how.

There are those of you out there who are looking for a cure for the tingling, the muscle spasms, the fatigue… for the demyelination that’s being caused. I desperately wish I could give you one. Since I can’t, I will happily offer an ear to listen, a shoulder to cry on, a hug when you need it, and a virtual party for all of your successes and good days along the way.

While I know I don’t have all the answers to the questions that bring you here, I will do my best to answer anything I can and support you when you need it. I’m honored and humbled that you decided to check out my blog as you search for answers to the demyelinating diseases that bring you here. I sincerely hope that you stay awhile and share your stories and knowledge with me as I share them with you.