3 months post angioplasty

Time has certainly flown for me this past 3 months.  I actually have my 3 month mark in 4 days. I'm having a quiet morning so I thought I would post a couple of days early.  


Let's see, still ups and downs but I do have to say the downs are getting fewer and further apart.  As long as I take care of myself and don't over do it.  Sleep is of the upmost importance for me.  If I have a night or two where I don't get at least 8 or 9 hours sleep, then brain fog can creep back in as well as other old symptoms.  I was very frightened a couple of weeks ago when I felt for a few days, as though I was back at square one.  Then I realized, as bad as I was feeling, I still wasn't using my crutches, even though  my legs were a bit rubbery.  


 So.... symptoms I still have difficulty with:


My hands are still quite numb, but I notice it changes in severity and from hand to hand depending on what position I sleep, sit or how tired I am.  Yup... I said tired, not fatigued.  


I still have bladder urgency from time to time.  But, the last few short flights I was on, I would normally get up to use the bathroom once or twice.  I actually made it from airport to airport and didn't have to scramble to the bathroom as soon as I landed.  


I still get the dreaded MS hug and can't seem to go off neurontin which seems to be the only thing that keeps it at bay.  Also, there is a neuropathic pain in the bottom of my right foot which is like stepping on a tack or sharp rock.  This isn't constant, but happens when I do too much walking.  


things that have improved:


OK, here is the biggy.... I finally had my eyes checked and the rx is better than the last one the dr. had on record which was in 2006!  I got to order new glasses which will be ready for me in about a week.  I had been switching between my last pair and a pair from before because my eyes would blur and I would get head aches (mind you, spending hours on my laptop didn't help)  When I had my eye exam, sure enough, my glasses were too strong.... that's a HUGE thing that I consider 'quantifiable' and would be hard pressed to believe could be 'placebo'!


I sleep so much better when I go to bed at night... solid!  Hubby told me that as a result, he's finally sleeping better.  I guess I used to toss and turn all night with the pain of laying still, but now I can wake up a few hours later in the same position.  


I still haven't had to break out the cane or forearm crutches again...I'm glad they're gathering dust.  My brother in law said we should have a 'crutch burning' party, but I'll hang on to them for a while to make sure all is well.  Maybe they stand (no pun intended)  to remind me  of how much better I'm walking and how much more endurance I have.  I actually went kite flying with my grandsons, it was a great day!  


Cog fog has stayed at bay.  I can concentrate clearly and for much longer periods of time.  My recall has improved significantly much to my delight, and disappointment of my hubby :) 


My flow of speech has remained improved since just over a week after my procedure.  I'm not sure how hubby feels about that one either.  I'm not always loosing words and struggling to get my point made.  It's truly a wonderful feeling.  


My hearing has remained improved, although not perfect.  I'm so relieved not to be completely deaf in my left ear.  I can enjoy listening to music, hear my grand baby when he wakes up, even listen on the phone with that ear that was technically gone to me.  I still have issues with hearing when there is a lot of peripheral noise in the room but, then again who doesn't?  Tinnitus only reappears for a few minutes, and not often.  


My balance has remained, I even danced a salsa with my husband spin and all.  He didn't have to scrape me off the wall or floor as he usually has to.  I do notice if I'm tired, and wake up early, get out of bed too fast, then I'm a little off.  But, I'm not 'wall walking' anymore and I can get into a standing position using only my legs.  


that's all I can think of at the moment, if I forgot something I will edit this post.  

5 weeks post angioplasty

I can't believe it's been 5 weeks since I was in Poland having an angioplasty. In some ways it feels like a life time ago, in others, like yesterday.

I did hit the ground running when I returned, and stress issues popped up as they always do when you have a big family. I had some back slide days, but the past 3 days I've notice I regained what little I lost and then some. It just goes to show that it takes time to heal.

And....heal we will! The fight for others still waiting for the procedure will go further, and faster with many of us tapping into new found energy and mental clarity. I'm so pleased to see more and more places opening to treat persons with CCSVI. But, we still have to fight to make this available in our home areas, and insist on proper training for those who will be treating people.

I agree with Joan that many Interventional Radiologists are just waiting, anxiously to help us with our vascular issues, it is after all their area of expertise. Unfortunately we have to do battle on their behalf as well, to be allowed to practice their profession to the fullest.

Some new changes I noticed:

my 'bad' hand is slowly improving.

I sleep better

My ability to focus clearly on things I'm reading or talking about has greatly improved

My ability to make decisions, quickly and with confidence has returned (I swear I had too many days this past year where I couldn't even decide what to wear for the day)

I think my eyes have improved, my glasses are driving me nuts! need to go to the eye doc to have that checked very soon.

I feel 'happier' in general, and handle stressors and conflicts much better than I have in years.

It seems i have to take stock once in a while, really sit and think and then I notice there are more things coming to the surface. My husband will also mention things I hadn't noticed, so how can anyone attribute that to 'placebo'?

One month Birthday

So, today is my one month birthday since having a stent put in my jugular in Poland.  I'm still doing WAY better than I was pre procedure, but I've had some backslide days.  I still have clearer congnition, speaking, almost no fatigue to deal with.   But, I've over done it, kind of hit the ground running with meetings (3 in just over a week) to try and further the cause for treatment in Canada.  That has brought it's own frustration.  After going to a meeting with one minister, I was told I would be asked to go to another, with his 'expert advising doctors' within 2 weeks.  Well Tuesday is 2 weeks and I have a feeling it isn't going to happen.  I've been enjoying my grand babies so much, I babysat, over night....twice!  So, I've snuck away up north for a bit to try and catch up on some rest and let my body heal some more.

Oh, yes, I can't forget to mention, the hearing continues to improve which is good most of the time....hubby's doing renos need I say more?  There were times when being deaf in one ear, partially in the other came in handy with some head phones  My sense of direction for where sound is coming from is improving but not perfect yet.   I also think my eyes may have improved (really need an eye appointment) since my glasses are driving me nuts and I've had some low grade head aches at the back of my head.  Since I noticed these improvements, someone sent me a study saying that ballooning the jugular has been an accepted treatment for hearing and vision problems....so much for 'new'!

Crutches continue to stare at me from the corner, gathering dust....poor things.....they can stay lonely!  My balance is so much better, but is off a bit the past couple of days.  I haven't had lyrmett's sign at all since I returned home, and my right had is about 60% better although my left is the same.  Dr. Kostecki said that made sense since the left jugular affects the right hand.  Still, it would be great to get the feeling and dexterity back in my hands.

MS hug continues to be an issue.  Someone told me once, or I read somewhere (the past few months have been the normal MS blur) that the dreaded hug is connected to azygos involvement.  When i was on the table, I did ask the doctor performing the angio, if he ballooned my azygos.  His reply was "there was a physiological abnormality, we can get the wire in but not the balloon, but we think the blood flow is adequate".  hmmmmm, yup I said hmmmmm, I'm not convinced that I don't have an issue with the Azygos at all.  It seems that most who have had this ballooned have had function and feeling returned to their hands, and the MS hug go away.  So, I'm waiting for a follow up, preferably by someone who knows what to look for of course (NOT where I went for my first scan), and then perhaps go somewhere to have this dealt with.  I'm wondering if because I was part of a study, if they only dealt with Jugular blood flow issues.  I haven't heard from anyone who went to the same clinic, having their azygos ballooned.  There were 25 patients in the past 2 weeks that were treated, which is way more than they had been doing, but not one has gotten back to me about azygos ballooning.  I did have a good look finally at my scan disks, making copies for another clinic.  I of course am not a radiologist, but if what I saw is the azygos, there are 3 significantly narrowed, flat spots.

My legs remain strong most of the time, but when I over did it babysitting, I did wake up to rubbery legs which scared the @#$ out of me.  They seemed to return to 'normal' with a bit of rest.  so....lesson to be learned....don't over do it!!  I understand it takes time to heal and that changes can keep slowly happening from 3 months to a year after procedure, but of course I'm impatient.  The MonSter has stolen enough of my time and quality of life!

2 week birthday today!

Today is my 2 week birthday :)  I think jet lag is pretty much behind me.  I slept in big time this morning, and I really slept!! We had our 1, 3, & 6 year old grandsons here for the afternoon.  We walked to the store (slowly) for slushies.  I had a blanket with me to sit on so we took a little break on the way back.

One thing I really noticed, is when I used to wear out, I had to lay flat every 1/2 hour at least, just flat because my back and neck would be hurting so much.  Now just sitting down for a few minutes does the trick!

I am going to keep up with posts the best I can, but I'm seriously going to take it easy and just 'go with the flow' for the next couple of weeks.  I have to learn to listen to entirely different messages from my body, and give my body time to heal.

Guy wanted to take me to pick out a new golf driver, then mentioned maybe that's not a good exercise for me just yet, because of the surgery and the stent.  I think he may be on to something so I'm going to try some yoga and palades.  I did buy a wii fit (my grandsons think I'm their hero now) so I'll try that by starting slowly.  I never realized how atrophied some of my major muscles had become.

Oh, and I also noticed my posture is much better, more each day.  My shoulders used to roll forward and Guy felt I was in danger of developing a dowager's hump, but for the first time in many years, I don't have to consciously and purposely force my back straighter and shoulders back.

follow up care

I had heard rumors that follow up care was going to be an issue for those of us who went abroad for treatment but, I honestly couldn't believe it.

I went to my dr. yesterday, he wasn't too impressed that I had treatment in Poland, but he did write my my rx for blood thinners and requests for my follow up doplar on my left jugular, and for my thyroid (they found a cyst in poland).  His nurse tried for 20 min. to book my appointments with the imaging lab and gave up in frustration.  She was talking to me at the same time and telling me what she was being told... "we do not scan jugular veins!"  I said nonsense, they do this for dialasys patients and others all the time.

she finally gave up in frustration, gave me the forms and the number to call them myself.  I drove home infuriated and disgusted that I had to fight one more battle.  Believe me I was NOT impressed.  I called the number, and when I started to get the same nonsense I interrupted the woman on the line.

"this is NOT for dx, it's a post surgery follow up!"  Then I got my appointments.....phew!!  All the time things were running through my head such as if you don't give me an appointment I want the reason in writing, is this grounds for a law suit....all those fighting things.

the test will be 2 weeks later than I was supposed to have it, but at least I have it for now.  I hope that chatting with the radiologist will spread more information to that area of professionals, and get them to honestly look at what we're fighting for.

I went for a thyroid blood test before I saw the dr. and the lab tech that drew my blood was so supportive.  She's looking out of country for treatment for something else.  What has this country come to that we have to flee to europe and all over the world to get the care we paid taxes for all these years?

I want to take a moment to also encourage and thank those who come to our political meetings, who are very advanced and not in good health.  Your bravery is exceptional!  I understand how hard it must be to watch others regaining functions when you can't have the treatment yet.  But believe me, your efforts are so very important, and make a HUGE statement in the fight for liberation.  I can't thank you enough!

11 days post liberation

Hello everyone,

I wasn't sure what to write at this point, but thought I should make a better effort to start somewhere.  We went to Poland, everyone there was amazing from Kate and Chris to Dr. Kostecki.  Poland is a beautiful country and the people are honest, hard working, hospitable and caring.  The hospital was spotless and the nurses came immediately if they were called.

The procedure was effortless honestly.  I was afraid that because I had gone deaf in my left ear, it would hurt when it was ballooned, but no, it was....as one friend put it....more comfortable than most dentist appointments.  My doplar showed only a small stenosis on the left, but a faulty valve that seriously obstructed blood flow.  They tried to balloon it but it wouldn't stay open, so I opted for a stent.  I didn't feel any immediate effects as I had hoped I would.  I felt less disappointed in the progress and more worried that I had let all my supportive friends and family down.  Not to worry.

The next morning I was chatting with a friend back at the hotel, out on the patio.  We had a water, chatted, had a coffee and chatted some more.  About an hour and 1/2 later Mary looked at me and said, "you know, usually by know you've hobbled off to the bathroom about 3 times!"  Wow, I hadn't even noticed.  My first real improvement!  I was always aware of how much that ruled my life, living from washroom to washroom.  Planning shopping trips around their locations and how much energy I would have to make it there and back before it was too late.  Now that I'm not experiencing so much bladder urgency I have to say, it's a wonderful, freeing feeling!

Then I noticed that my right hand (both hands have been hopelessly numb for over 5 years now) felt less numb and I have better fine motor skills with it.  Slowly over the next few days my hearing improved quite a bit (still not perfect) and the room stopped spinning when I got up or rolled over in bed.  Hubby swears that my color is 'much pinker' and that my eyes are shinging more.  My leg only drags a bit when I've over done it and I'm over tired.  Believe it or not, I actually wore heals to church and then to a meeting with our minority leader MP!  I wore them to the meeting as a statement as to what a difference even the little pleasures in life mean to us, and how effective the procedure can be.

I believe the MP we met with is honestly sympathetic and outraged that we are having to leave Canada for such a promising and simple procedure.  I went through the procedure rather pragmatically, not expecting too much, just hoping to stop progression.  Seriously, the improvements I have had can't be 'placebo'!  so what....i don't want to pee all the time so I don't?  I wish, it never worked for me before!

I had read where others said they weren't used to feeling tired instead of fatigued.  I get it now....tired, hard to recognise.  I even yawn, I haven't done that in a long time.  We spent time with our grand children the other day and I actually felt TIRED!  Not that mind numbing, room spinning, every cell in the body hurting fatigue, but tired!

I will keep fighting for the procedure to be available for everyone with MS.  No more friends should be left to suffer hopelessly, or worse yet, die.  This is a serious violation of human rights and one that needs to be stopped.  Follow up care is now a concern.  I hope I won't have a problem with the one month doplar to check on stent placement and blood flow, but I guess I won't know until I try.

I'll up date again when I have more news.  I had such a magical time in Krakow and wanted to write about that too.  If I go back for a 3 month check up, I'm taking an extra suitcase to bring back shoes!!  Jet lag is the worst thing I've had to deal with physically.  Breaking the trip up more if possible is advisable.  I found the 9 plus hour flight tough mostly because I started to have a panic attack that I wasn't moving as much as I should and would develop blood clots.  Thank goodness for Guy calming me down and keeping me sane.  Oh did I mention, he spent his 55th b day taking care of me in the hospital, then going back to the hotel to phone and write to everyone that I was ok.

Look out world, here we come!

First Day Liberated

Not sure how well I'll do up dating, but I can always refine things later.  I had a rough night in the hospital mostly because we weren't allowed to sit up or even lay on our sides for 12 hours.  ewwww bed pans are not fun!  The entire procedure took less than an hour and wasn't at all painful.  I had the left Jugular ballooned but it wouldn't stay open, so I went for the stent.  It was blocked (in their words ....) very very very bad.  The right had good enough flow and they couldn't get into my azygos vein to balloon but because the wire went in they felt it had flow as well.

Let's see, I did notice my bad leg is now my good leg.  My friend Mary pointed out that I visited for quite some time this morning and even had coffee without having to run to the bathroom!  hmmmmm may be able to actually shop without extra clothes weighing me down and running from bathroom to bathroom, that would be impressive.  my right hand is stronger, but still some numbness.  I had one heck of a nap this afternoon for an hour, I still need to catch up on rest.

There is a wedding in the hotel tonight so the restaurant is closed to us.  It's so very hot outside but I guess we'll have to find someplace to eat so I'll get to see how my heat coping is now.  I have a slight improvement in my deaf ear so far, but I'm hoping the hearing will return as I rest.

We met Bill and Sue from BC, Mary from Ireland, and Lynn and John from Scotland as well as a wonderful couple from Bulgaria who were just here for a one month check up.  There is quite a bond between we liberati.

We have to move rooms due to a wedding going on outside our window so i'll fix this blog as soon as I get a chance, possibly tonight.  I'll add whatever I can figure out is new as I learn it and as I catch up on rest.  Guy promised our grandsons a 'brand new memmere' so I guess I better get at the healing part eh?

Liberation Day!

Well today's the day!  I finally slept through the entire night, so I'm hoping I'm strong enough to fly through the procedure.  I met up with 4 others, and one more from Bulgaria who was here for a check up.  Very fun group, very supportive.  It's wonderful to be surrounded by people who are going through all the same things, all the same questions, all the same worries.

Dr. K is a very nice, compassionate man.  We've had our doplars and our MRI's now, today is the big day that we go for a venogram and procedure.  I'm worried about the venogram since I had a slight reaction to contrast 15 years ago when I had a CAT scan.  I think I may ask about just going straight for the procedure.

The doplar showed that I have a slight stenosis on the left side (which is why my right leg is the worst) but it also has a pressure of 100 when it should be at least 500.  The right side also has a pressure gradient of only 120 so I asked if it could be a membrane or valve issue.  He said yes, so that would be an easy fix.  I don't know what showed up for my Azygos vein since I couldn't open the MRI file on the disk I was given.

During a neuro consult, I was asked what I hoped to see the most from this procedure.  I told him my wish list was:  first....fatigue gone,  second....hearing in my left ear,  Third....feeling in my hands, and the rest would all be just a wonderful bonus.

I called my mom last night (her day) and I was so tired I could tell she was worried.  I emailed all my children and sent hugs to all the grand babies, I miss them all so much.  I woke up with a renewed sense of hope and faith that things will work out today, jet lag can be so horrible on your frame of mind.

i have to eat and then go on starvation for the rest of the day, so off I go.  I will blog as soon as I can.  The heat and fatigue were such serious issues for me the past 6 days, but I'm getting a handle on it all.  Love to everyone...blog to you soon!

4 more sleeps!

This is a bitter sweet day.  Sweet because I'm finally excited at last to be packing for Poland and Liberation!  4 more sleeps as my grand babies say.   I even managed to go out for a bit  to do some last minute errands, things I need for the trip (new shoes included of course).  I used my walker, vertigo has set in big time (probably connected to the deafness I'm trying to live with), but we even went for a quick supper afterwards.  


Bitter because I came home full of hope again, only to learn we have lost another of our own.  Bridget, always commenting, always encouraging, and I was just wondering if she was home from the hospital yet.  It absolutely breaks my heart that one more person who touched my life is gone due to MS.  It does fire my heart into a stronger than ever determination that WE WILL WIN!! We will and it WON'T take 8 to 10 years.  Shame shame shame on the medical society for being so cruel and callus!  Bridget, we will miss your comments on Face Book, and your family and loved ones miss you horribly no question.  We feel your spirit with us even now, fighting, always fighting for justice for your CCSVI brothers and sisters.  


3 good friends have gone before her.  Ricky from NJ who was a wonderful, fun man.  Pat from Ontario who organized the big Jooly's Joint gathering we had in Vegas, and the sister of my heart Norma from Puerto Rico who I got to hug on more than one visit, laugh endless hours, and who was so supportive when Guy was hanging by a thread in intensive care.  I swore then to fight so that NO MORE would leave this world far too soon.


So, this is bitter sweet with the excitement of not only going to Europe for the first time, but to get my life back!  Bitter because of those who didn't live to see this day.  This will be a year of shame for our medical world but also a year that will change it completely.  It will also be a year of triumph against the MonSter!

10 days and countingiI

I should be more excited today, you would think I would be anyway.  I had a better day than normal.  I unloaded and loaded the dishwasher....rest....made the bed...rest....ironed a table cloth and 2 shirts...that's it I'm road kill.

Maybe it's the rainy weather, maybe it's this plugged ear thing, I don't know, but I'm usually excited about the opportunity to travel anywhere.   Maybe it would all feel more real if I had more confirmation, even though I have received an email a week or so ago, that everything is in place.  Maybe it's leaving the kids, grandbabies (really miss them) and my folks for a couple of weeks.  Maybe it's the fear that I'll go all that way to find out they can't help me....maybe it's just MS.

I will try to make a youtube before we leave, but that also depends on how I'm feeling.  Awful how our lives with this 'condition' revolve around NOT making plans, never knowing how we'll feel any given day, and just praying that we'll have the strength to get through what we need and want to get through.  I'll try harder to rest up and refill my 'hope' tank before I go.  I do believe attitude plays a big role in how well we cope with getting through the day.

some "I forgot" symptoms

Ok so we know about cog fog, well this was an example.  I'm trying to learn how to use this blog page, and upset that I wrote too long of a piece.  But.....I forgot a few symptoms so for record sake, here goes

- In the beginning I went numb down different quadrants of my body, left side, right side, front 1/2, back 1/2, top 1/2 and bottom 1/2, think I ran out of 1/2's  

- the more I move on a good day, the number my legs get from the feet up, pain excluded of course.

- when I'm really fatigued, I get aphasic and tend to slur if I can get the words out, and hopefully the correct words.

- sometimes (quite often lately) it feels like my skin is vibrating pain, like every molecule is upset.

- right now I have about 15% hearing in my left ear, and 85% in my right ear....this is new for the past week and 1/2.

hmmmmmm think that's it.  I'll try to battle the cog fog and do some editing and make things clearer when I feel more alert.

Pre Liberberation

Ok, so here I sit pondering all the events of the past few months.  Before Christmas my 84 year old friend, Else, demanded I look into a new thing called CCSVI.  Sure I thought, here we go again with the media reporting a 'new' break through that we all probably heard of and dismissed years before.  But, she persevered, and I listened.  My world was rocked!  It was like all the puzzle pieces of my life were falling into place with a logical, understandable, explanation!  I called my friend in ON to tell him, he was as reluctant as I first was but, I begged him to trust me, and he did.....then his world was rocked!  The activist within me was awakened for the first time in years.  I joined Joan's list and gradually, many others and started to research all that I could find.  For the first time since I was diagnosed, I had real hope.

Now I have to explain something I've kept very close to my heart because I was afraid of jinxing myself.  I am going to Poland!  I was fortunate enough to be accepted by Dr. Kostecki who studied with Dr. Simka.  I can't even begin to explain how excited, and afraid I have been.  Not afraid of the procedure, or anything like that, just afraid that either the Volcano in Iceland, or some smaller detail would get in my way of going to Poland.  I made non refundable airline tickets and today I made my first payment to Dr. Kostecki's team.  I'm not as afraid of them saying they can't find anything.  I have a definite dx of MS, 3 brain and CNS MRI's (not to mention one of my knee but that's another issue).  I was just re reading the last one from almost 2 years ago that showed multiple lesions in the brain and spinal cord as they had expected.  I trust in Dr. Zamboni's research that almost all of us have definable stenosis.  

I decided to keep a record of my thoughts and how I'm doing off line before posting to a blog (there goes that superstition again), and post it just before I leave.  So, where to start.....

In the beginning

I guess first of all, once I had my dx when I was in my mid 30's, it was another time when pieces fell into place.  I had been sick all of my life that I can remember.  Ear and throat problems, neuropathic pain, leg problems, and of course mostly fatigue.  I remember in high school sitting on the edge of my bed in tears, wondering how I would manage to get dressed to go to school.  I would also get these head aches, and shooting pains behind my fingernails (still do) that feel like someone suddenly jammed a needle under my finger nail.  I would gasp and shake my hand for a few minutes.  My friends would then ask what was wrong.  I would say, "don't you hate when...." and describe the pain.  They would look at me a little sideways and quietly say, "ummmm oh ya", it's only after my dx I realized they were only humoring me.  I now see that they just assumed the 'crazy' part of me was showing itself.  I didn't know any better, I thought everyone experienced these things.

The Big DX

The day of my dx I remember every little detail, except for the date.  I think I forever put it out of my mind.  The Dr., an internist, was called out of the room 3 times during his delivery of the news to answer phone calls.  After he finally spit it out, my head was spinning and I wanted to ask questions.  The only person I had known with MS, and the reason I would participate in fund raising for years, was a wonderful man who had what they call 'galloping' MS and who died within only a few short years.  He left behind a wife and 2 children.  While I was stumbling to organize my thoughts and ask questions, the Doctor looked at me and said, "well you have enough to deal with for a while, come back in 2 weeks and I'll 'educate' you".  He really didn't know me well at all.  I walked all the way to the library in tears (amidst strange looks from the people I passed) and took out every single book or article I could find on MS.  I then took the bus home and found my community guide and called our local MS representative.  Deloris was wonderful, she must have spent a couple of hours on the phone reassuring me (fellow ms'er and volunteer).  She put together a package of information booklets and my husband went to pick them up.  I've always taken the attitude that it's better to know your enemy, and believe me MS is my enemy!

Twice now I've had someone ask me if I wouldn't be better off 'making friends' with MS.  HELL NO!!  I always replied, that the day I make friends with it, is the day I give up and give in.  Both of these people were not personally affected by MS, although one was a counsellor.  I'm sure they were doing their best to help in any way they thought would work, but nope, never ever will MS be my 'friend'.  

So, I went on to have 4 children.  I loved being pregnant.  My toes would go numb usually, but I was told it probably had to do with the baby pushing on a nerve, or hormones or something.  After each baby was born I crashed big time!  I thought I must be lazy and everyone felt the way I did after having a baby.  So, I pushed myself and pushed myself, to keep up to them and make sure their needs were met.  Don't get me wrong, I wouldn't have changed a thing, I loved being a mommy.  I was an active community volunteer, and dragged myself out of bed in the mornings to pack lunches and make a hot breakfast.  It was as if I was afraid to slow down because I may not get up again.  As I look back now, I believe having my children kept me going.

Once my youngest was in school, I went to University.  I loved the classes and as an adult student I had the confidence to insist on what I wanted to study and with which professor/teacher.  In the middle of a 4th year psych course in feminist psychology, I went blind in one eye.  I couldn't read, I tried, but the other eye became too blurry to continue on.  I allowed myself to quit and after 2 months things got better, then I went blind in the other eye.  This has happened to me 3 times over the course of the past 15 years.  Let me tell you....no one appreciates depth perception until they don't have it!!  I would reach out to set my cup of coffee on the counter only to have it crash to the floor.  

So How are my Symptoms Now?

Ever since my dx my two biggest problems were fatigue and the infamous 'MS Hug' or tight banding around the ribs.  For the past year my fatigue levels have risen enough that I'm finding it almost impossible to 'push' myself any more.  I do things in little spurts.  I have times where just getting out of bed to go to the bathroom during the day, is almost enough to push me into giving up.  I take Gabapenten for the 'hug' or I wouldn't be able to get out of bed at all.  We have 9 amazing grand babies (all 9 years old and under) with number 10 on his way in the fall.  We also have two beautiful step grand daughters 6 and 9 years old, so energy just isn't an option, it's a 'must have'.  I adore them, and I want to be a loving, involved, part of their lives.  

I still have problems with neuro pathic pain and not always in my fingers.  Sometimes it's in my foot, my face, or wherever else it decides to land.  I've had terrible problems with leg spasticity on and off.  Now it's almost always there, but there are times when I truly fear  I will never be able to straighten my leg again. 

My eyes have never fully recovered, and tire easily.  I am an only child and my parents put themselves through university starting when I was starting elementary school.  Spending time alone gave me a love for reading.  My mom would offer me books she was reading in University, and some I just picked up from where they left them in the house.  Then I discovered novels!  Well, I would go through a book per day quite often.  I would like to be able to read like I use to without my eyes blurring, hurting and my head aching.  

Depression was a serious issue the first many years, and also affected my children and husband.  There were so many days that I almost gave up, but thanks to the internet and my many MS friends, I managed to survive.  My husband suffered a high voltage electrocution 9 years ago when the mast of his sail boat hit a major power line ....twice!  He joked with the doctors that the first time stopped his heart and the second restarted it.  One doctor told him that's not a joke, that's probably what happened.  I remember the ambulance picking me up on the way into town.  I could hear his screams, hear the para medics, who were amazing, keep talking about how he was going into V fib again.  But, I couldn't touch him, I could only call out to him and beg him to hold on while the RCMP officer that drove the ambulance tried to reassure me (huge thanks to him by the way, he was such a source of strength for me).  They even let the kids into the trauma room they were so completely convinced he was about to die.  That was something we heard over and over for more than a week.  They just didn't know who they were dealing with!  My MS family/support group, became his as well.  We had the opportunity to meet some of our friends from all over the world, on more than one occasion.  Cards and parcels came from Australia, Puerto Rico, the US and Canada.  My gramma went into a comma while Guy was in intensive care, I never had the chance to say good bye, but at least the last words I said to her a few days before were, 'I love you'.  oh....did I mention stress?  He ended up with many of the problems I have such as chronic fatigue, neuropathic pain, depression, and the infamous 'cog fog'.  We're now the king and queen of sticky notes.  I have told him many times that he went to a lot of trouble to get MS.  

OK, this one maybe embarrassing to non ms'ers, but to us it's a way of life....the dreaded bladder.  Ever since I was a child it seemed I spent most of my time making sure I knew where the bathroom was and making sure I got there on time.  Now if I can't get to one without waiting a while, or without walking what seems like longest walk imaginable, I end up with bowel problems too.  So, I always carry extra clothes etc with me just in case.  More to carry, more to add to fatigue, but better than hiding in a public bathroom until someone comes looking for me.  

My gait is not the best, I tend to drag my right leg quite a bit especially if I've been up and about for a while.  If I'm up and around even a bit too much, I get a feeling and pain under my foot like someone put sharp pebbles in my shoes.   Balance....well you would never have known I used to dance Romanian dancing.  I miss that, I loved that part of my early years.  

Sleeping.....it seems I go through several nights of 4 to 6 hours of sleep, crash symptom wise then maybe get an 8 hour sleep for one night.  then the vicious cycle starts all over again.  Most of it is probably due to the constant pain in my hips, shoulders and either freezing or sometimes burning feeling in my feet.  Inclined bed therapy has helped with head aches quite a bit, but still not with sleeping.  Even the occasional time I take a sleeping pill, it's only one night of fitful sleep then it all begins again.  I've had so many nights where I wake up several times so sore, to look at the clock and actually become disappointed when I see that I've only slept for an hour or so.  

Hands...one of the things that has grieved me the most, is my hands went numb 5 years ago and never recovered.  In fact sometimes they get worse and pain is the only thing that comes through the numbness.  It can sometimes feel as though someone put tight elastic bands around my wrists and as if my fingers may explode.  Come to mention, sometimes my fingers actually do swell, as well as my feet.  I would get rings enlarged only to have them start to fall off a month later.  I was teaching myself to play classical guitar before my hands went numb, now I just look at the case and dream I could open it up and relearn what I've lost.  I also did pottery for a few years, even own my own wheel and kiln.  I went to a high realism graphite drawing course, and discovered I really could draw!  Well I used to.  Now I hardly recognize my signature.

Hearing.....I've had tinnitus several times.  I remember one night being so annoyed and woke my husband up demanding he go over to the neighbor's and tell him he has to shut his diesel truck off!  he would swear he couldn't hear anything, then finally I realized that even if I plugged my ears I could hear it.  Now, this past week, it seems I have lost most of the hearing in my left ear, and partly in my right ear.  It feels like it's plugged, but I doubt it's infected, there is no pain, just a muffled, plugged feeling.  For someone who loves music, this is really getting to me.

Oh yes, one more thing....my neck.  for a few years now especially, my neck gets unbelievably stiff.  When I turn it from side to side as much as I am able, I hear what I call my 'rice crispie crunching' noise.  Guy will try to point something out while we are driving and I constantly have to remind him I can't look back that far or that quickly.

OK I had intended to do this video style, but I can't upload to youtube while we're up north, we have a limited wireless internet.  So, I hope that this rambling piece of prose will suffice in documenting before and after my trip to Poland.  There is a small part of me that is still worried that they won't find something they can try to fix, but I'm trying not to let those thoughts have power over me.  I'm trying to stay positive and just believe and remember to breathe!  

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