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Friday, December 31, 2010

Handicapped Ramp Fails

Today, as a project to promote handicapped awareness, I thought I would share my collection of bad handicapped accessable ramps from around the world.  I can't believe people are actually supposed to use these.  It just makes me wonder what the people who designed these were thinking.

Wednesday, December 29, 2010

Recovering from a small holiday flair...

I took this picture with my cellphone today of my tree.  I thought it looked sort of like a greeting card.  

Today was my last day of steroids following a flair that hit me over the Christmas holiday.  It began with numbness in my left leg and tiredness, and progressed to having no use of my left leg at all, and my hands have gone numb.  

So far, the steroids haven't helped many of the symptoms, other than the fatigue, which they did wonders for.  I hear it takes some time for them to work, so I'm just waiting patiently to see what happens next.  Hopefully good things.  

Saturday, December 25, 2010

Merry Christmas


Today was Christmas day, and I got some wonderful gifts. One of my favourites was this frog prince egg box.  
I also got some new pandora beads for my bracelet.  I love beads, and these mean a great deal to me because they came from some amazing people who I consider family. 

I had a great day and when I was done opening my gifts and eating dinner, I got to visit my 104 year old grandad.  He is an amazing man, who builds clocks and musical instruments.  He plays several musical instruments, and did a small show for us all on his violin this year.  Being near him has always made me happy, and seeing him makes me smile.  He is so wise, and kind.  I am not sure I will ever meet another person like him.  He has taught me so much.  

This is how my grandad had his house decorated.  
Here he is fixing, and then playing a violin.  It was go good to hear him play again.  I hadn't heard his violin in years as he's been playing the banjo more lately.  

I had a wonderful time.  The holidays have always been magic at his house.  He never seems to age.  He's been the same since I was a baby.  

I got really sick while I was there tonight.  I tried to hide it.  My leg has been going numb for two days, and the room began spinning while I was there. I lost sight for awhile in my left eye, but it returned.  I hadn't been feeling too well all weekend, but wasn't missing christmas at my grandad's for anything.  I didn't care if I had to be taken in on a streacher.  Fortunately I made it through the night with only a few minor tears of pain.  The joy far outweighed the pain, and I had a fabulous evening.  

Merry Christmas Everyone

Thursday, December 23, 2010

Flairing up?

Today I woke up with a numb right leg.  I'm not sure if I'm flairing up for sure or not yet, because the symptoms are supposed to last 48 hours before it's considered a flair.  I've also been vomiting today, which is often a problem for me when my MS acts up.  A little klonipin fixes that part up fortunately.  I promised myself that I would keep this blog updated no matter how I feel, so todays entry will be short.  

My brain feels all foggy, and I'm having dizzy spells, so it's hard to think to come up with a good topic.  I think I'm just going to post one of my photographs and do a much better update tomorrow.  

Tuesday, December 21, 2010

Swallowing Problems, and how to Cope

I, like many with multiple sclerosis, have swallowing problems.  Sometimes they are pretty serious, and other times they are mild.  When they get serious, I have been known to aspirate food, which leads to aspiration pneumonia, which is very bad.  Aspiration pneumonia feels like a very heavy, and painful feeling in my chest.  I get lightheaded, and dizzy when I stand, and have trouble catching my breath.  If you have ms, and start experiencing any of those symptoms especially after some difficulty swallowing, you should see a medical doctor immediately.  When I go to see my doctor, he usually listens to my chest, and when he suspects that I have pneumonia, he orders an xray of my chest.  

For a long time, when I tried to swallow food, it would get stuck in my throat, and water would come shooting out of my nose.  I became very dehydrated and hopeless.   Finally at Winchester Medical Center, where I did a barium swallow study, one of the nurses taught me some tricks to help me swallow and be able to eat normally again.  
1.  Tilt your chin toward your chest when swallowing food.  This really did help me
2. There is something called "thick it" that most pharmacies sell.  It can be mixed with water, milk, or juice.  The thicker texture helps prevent choking on thinner liquids.  This also helped me quite a bit with the aspiration problem.  
3. If you have trouble swallowing your pills or vitamins, check with your doctor to see which ones are safe to crush up and put in applesauce to swallow.  This has saved me several times when my medications simply would not go down my throat.  
4. Drinking from a straw really helps.  I always use a straw now, and forgot to add it to this blog at first, but one of my friends reminded me.  Thanks Mike!
5. Another thing that Mike reminded me of: you see if your medications come in liquid form.  Many do. 

I hope I was able to help anyone out there going through some of the same problems.  

Today's random picture from my gallery.  I took this one in my garden

Monday, December 20, 2010

Another day at home in my pajamas.

For those who are still able to work, that must sound luxurious. 

 For me, it's become a sort of meloncholy hazy  hamster cage-like hell. 

I think it's just the repetition of days, turning into weeks of the same routine in the same house.  I do things to keep myself busy such as artwork and photography.  It helps me to stay active, and the internet has been a key component of keeping me at least half sane.  I love people, but hate leaving my house.  I have talked to other m.s. patients who feel the same way.  It's hard to describe how I feel.  

I try to go out and the panic sets in.  The lights in stores are bright and hurt my eyes.  I usually end up with a headache, and people look at me funny if I wear sunglasses indoors.  I've tried it believe it or not.  They look at me funny with my cane anyway, so I'm use to getting stares.  That part doesn't bother me.  It's how my body feels that starts getting the best of me.  My legs get heavy, as if my shoes are increasing in weight little by little as I walk.  It gets difficult to breathe and my lungs get tingly.  My head feels like a bowling ball on my neck.  I don't mean to complain.  I'm just explaining what it's like, because the hard part is going out and being able to enjoy myself when I feel that way.  It's just easier to stay at home and not feel so bad. 

 Perhaps a little symptom control will give me some of my life back.  I'm not sure what can be done about that heavy feeling in my legs.  After about 50 ft of walking, my muscles tense up and ache, and my legs collapse.  It makes going to the mall difficult.  A wheelchair does help a great deal, and allows me to enjoy shopping so much more.  I just try not to use one for as long as I am able to walk at all.  Sometimes I have no choice, especially at large department stores, malls, and wal mart.  

I do crave going out once in awhile, but what use to be a minor trip now feels like a big day out to me.  I have three ferrets already but maybe I need more pets.  Hmm.   

The photo is a picture that I took of my own feet back in the year 2000.  It is part of a series on my facebook called walking in my shoes.  

Sunday, December 19, 2010

Life isn't so bad after all.

I'm trying to decide which direction to take this blog next.  I have so much to say, and so much to show, and I'm not even on the present yet.  I'm wishing that I'd have started this blog much earlier, but for some reason, I just couldn't do it.  I was in a horrible state of some sort of depression mixed with what is referred to as "cog fog".  It was terrible.  I could barely understand what was being said to me.

Recently, what I would call a miracle happened.  A friend of mine whom I had met on a chat a couple of years ago, after my diagnosis started a MS support group on facebook.  Somehow that group lifted my depression, and gave me something to smile about.  It had been over a year since I had actually smiled.  It felt wonderful. 
 Earlier I was complaining about what friends I don't have, but in doing so forgot to appreciate the wonderful friends that I do have.  I also joined a new chat room full of wonderful people who have welcomed me with open arms.  They are all amazing.  

My lesson that I learned today: not to dwell on the negative, because in doing so, I miss the positive. 

I don't think I have any ms related photos to share, but I love blogs with photos, so here is one that I took a couple of years ago.   

Tis the season...friendships...bah!

This is an image that I drew as an online christmas card for my friends.  I've always loved being near my friends during the holidays.  Friendships are invaluable, especially for people who aren't feeling well for the holidays. Sadly for me once again, a shopping date with a friend has been cancelled, and my tree will have to go without a star unless I can figure out a way to hang it myself.  

Ever since being diagnosed with multiple sclerosis, I have learned many valuable lessons in life, including who my true friends are.  Sadly, most of my friends were far more shallow than I imagined, and it's as if my head had turned into a giant wart the moment I was diagnosed.  My once busy phone now goes weeks without ringing except for reminders from my Dr.'s offices.  My room, once full of people sits empty most of the time. There are days that it really gets me down, but I try not to let it.  I just have to realize that friends like those weren't worth having.  I still can't help but miss them from time to time, but it gets easier every year. 

On a happier note, this is a blurry picture of my tree that I took with my cellphone.  As you can see, I'm very short, and this is a 7ft tree, so most of the ornaments are toward the bottom.  I cut the top off of the picture so that I wouldn't have to look at the missing star.  

Believe it or not, all of those ornaments are plastic.  This year, I don't have to worry about the cats breaking them.  

I plan on having a wonderful Christmas with the close friends that I have.  I'm not going to let a few friendships gone bad ruin my holidays.  I've heard that many people with ms lose friendships due to their illness.  It's very sad that this happens to people when they need their friends the most. 

Saturday, December 18, 2010

2:30 In the morning, and still no sleep.

Well, I'm still awake.  I feel exhausted but my body just will not fall asleep, and I'm supposed to go Christmas shopping in the morning with a friend.   I don't have that many friends these days, mostly due to my M.S., so when a friend asks to spend time with me, no matter how bad I feel, I try to jump on the opportunity.  Shopping is getting more difficult for me, because the muscles in my legs seem to give out, and collapse after about 50 feet of walking.  My leg braces help keep my feet pointing in the right direction whenever I walk so my walking looks much more normal, and is less strenuous on me.

When I first got my leg braces, I hated them, but now they are my friend, because they keep me mobile and help me get where I need to go.  I just wish that they looked a bit more attractive.  I am getting some new shoes to wear with them.  As you can see, the shoes that I have are well beaten up from stumbling so much.

Tonight I noticed some numbness in both of my legs, and hope it clears up in the next day or so on it's own.  If not, I will have to call my neurologist and report it.  I'm hoping not to have another round of steroids.

Since I'm having a friend over tomorrow, I'm hoping to finally get the star put on top of the Christmas tree so that I can take a picture of it to share on this blog.  It's such a beautiful tree!!!!    Anyway, off to bed to try to get at least a little bit of sleep.  I can't wait to see how tomorrow turns out.  Shopping is difficult for me because of my legs.  Fortunately, many major stores provide electric scooters, which help me a great deal, and help me feel more independent.  I just wish that those baskets on the front of the scooters at walmart were larger.  They must think that handicapped people don't need to buy much.

Sleeping Every Other Day???

I've been awake all night but that isn't unusual for me.  Lately I've been awake about half of my nights: every other one to be exact. This started earlier this month, and I'm deciding whether to tell my neurologist about the problem, or hold out and see if the problem corrects itself.

Many, if not most of the people I speak to online with M.S. have sleep problems. Usually, like myself, they are exhausted all day but cannot sleep at night. What's up with that????

On a lighter note, my christmas tree is up, and I'm just waiting for some help to put the star on top of the tree, as I'm a bit too wobbly on my feet to stand on something to reach.  Pictures soon to come of the tree. :)

Today's random photo:   My Meds

So my blog begins....

Hi, my name is Josi and I'm 35 years old. I'm divorced with no children.

 Two years ago, I began having headaches.  I had never had headaches before, so I found these odd.  I was also having trouble swallowing and projecting my voice.  Sometimes I would try to turn door knobs, and think that the door was locked, only to have the person behind me open it right up.  I also began falling, because my ankle on the right side of my body would suddenly give out.  I wasn't sure what to make of it all.  I wondered if I was going crazy.  Sometimes I would try to speak to people, but barely a whisper would come out of my mouth.

Worried that I had a brain tumor, I began consulting doctors, who all assured me that nothing was wrong.  Many rolled their eyes at me.  I was called a drug seeker, a hypochondriac, and of course, crazy.  I began to believe what the doctors told me until one day when I got a headache so bad, that I went to the emergency room.  Concerned by some of my symptoms, the hospital performed an emergency MRI and this is what they saw.  

The emergency room neurologist on call came into my room to deliver the bad news.  He believed that I had a  type of brain tumor known as a low-grade glioma.   I was crushed. He referred me to a neurologist who began doing a battery of tests.  During this time, while awaiting my results, something odd happened. 

One night, when I got out of the shower, I noticed that my feet were numb.  Both of them.  By midnight, the numbness was up to my knees, and I could no longer walk properly.  By the next day, the numbness was past my hips, and in both arms.  Terrified, I called my neurologist who immediately ordered more tests, and a second set of mri's...this set including my neck and spine.  

A week later I got a phone call from my neurologist's office... I was to go in immediately.  When I went in, I was told that I had ms.  I didn't cry... I was just stunned, and a bit relieved that I didn't have a brain tumor after all.  The neurologist wasn't sure what kind of MS I had yet, and told me that I had a week to choose which medication I would be using.  I was sent home with books and videos, which I studied closely.  I chose rebif as my first medication.  Since then I've switched medications, and am on Avonex now, because the Rebif made me feel sick too often.  Different meds work differently for different people, and Rebif just wasn't for me.  

Since then lots has happened, including the disease progressing to the point that I now wear leg braces and use a cane.  I still love life.  I'm still a happy person, and can't wait to share some of my photos on this blog.  

The neurologist said that my lesion is tumoreffective..meaning that it mimics a tumor.  In this scan without contrast, you can see that the lesion has mass, and looks very much like a brain tumor.  No wonder I was misdiagnosed at first.

This is the lesion that my neuro found in my neck.  This is the one that caused all four of my limbs to go numb. Whenever I look down, my body goes numb.  My neuro says that this lesion is why.

Well, now that I've introduced myself, and showed some pictures, I can get on with my daily blogging.  That way I can share my journey with others so that maybe I can help or educate others.