Thursday, October 21, 2010

Three months and counting...

Time has slowed since my treatment in July. I've battled back-to-back bladder infections (thankfully halted by my neurologist's prescription for a daily antibiotic for three months), a severe muscle tear that flattened me for at least two weeks and made me relearn to walk and recondition from scratch, almost daily breaking news events that needed broadcasting to the online community, our Victoria information session with 275 people attending, and so much more.

Personally, I struggled to deal with the return of leg spasms for the first time since my treatment. Even though they were minutes (or less) long and not painful as much as a bother, I couldn't help but feel they could return to the daily agony I endured for hours at a time for years. I panicked, sort of, and contacted my angioplasty doctor in Albany, NY.

Let me just say how wonderful it is to have a doctor that answers my email within hours.

Anyway, on his suggestion, I returned to False Creek for a follow-up ultrasound in September. I was fortunate back in March that both my jugular veins showed clear problems on my ultrasound that were confirmed (and treated) during angioplasty. These problems were that my right jugular didn't flow properly when I was lying down; my left one didn't flow, or even empty, when I was sitting up.

I was optimistic my repeat ultrasound would show me how my veins had changed. I know the continuing benefits of no swallowing difficulties and greatly reduced spasms are a result of my angioplasty. At least an ultrasound would confirm the flow problems in my jugulars were fixed. As for my azygous, which had 5 stenoses, because it isn’t picked up well on a scan I choose to believe my five blockages there remain fixed.

So, onto the ultrasound! First, my left jugular was scanned lying down. Flow normal (as it was before). Now my right -- flow normal! The angioplasty worked! You can even see the footprint of the balloon on the endothelial lining...just fascinating! The doctor said he investigated this when he first saw it and the fuzzy walls are normal following a venous angioplasty.

With the ultrasound still on my right, the doctor scanned me sitting up. He confirmed my right was still normal. Now, when I’m still sitting, he scans the left... To my initial dismay he confirmed I still had the same flow problem as before. We tried a few times with me alternating between lying down and sitting up. Each time I sat up, the vein did not collapse and the blood remained at a near standstill in my vein. This is not normal!

Here's my right when I'm sitting up -- the black dot shows my artery open (as it should be) and the jugular collasped (as it should be).

And here's the left -- two black dots equals both an artery and a jugular vein filled with blood. Trouble is, the blood in the vein isn't supposed to be there (and it's not moving very much).

The doctor speculated the vein could be folding or obstructed on the outside by something. I recall the x-ray of this stenosis taken when my vein was angioplastied. Could my stenosis have been scar tissue from repeated pinching every time my head was upright? There's bone right at the point of the stenosis and muscle too -- maybe they are obstructing my vein somehow when I sit up?

Stretching scar tissue won't make the cause of the scarring disappear. I need to see a surgeon. Angioplasty won't fix this.

Trouble is, I live in Canada and vascular surgeons are wary of seeing anyone with MS. This is my next battle in my ongoing fight for my optimal health.

In the meantime, since my muscle injury, the spasms have disappeared 99% again. I am so delighted and feel so very fortunate to have been angioplastied. I know my left jugular will eventually get fixed and there's even more possibility for improvement.

In the meantime, I continue the fight to bring treatment to Canada. Those of us with strong voices must speak for those who cannot. It's a battle we can't afford to lose.

Sunday, September 5, 2010

Two month post CCSVI treatment injury -- the GOOD, the BAD, and the UGLY!

I made a terrible mistake in my post-treatment recovery and I want to let everyone know about it so they can avoid doing the same. Basically, I underestimated the consequences of trying to do too much. My CCSVI treatment definately increased my energy, but that turned out to be a bad thing, at least for 2 weeks or more. Here's the story...

Over the past few weeks, I've been moving well, swimming, and doing mild exercises (mostly hip and lower body) to build my balance and leg strength. Even though I had ANOTHER bladder infection three weeks ago, I had good optimism going forward. In addition, my doctor saw fit to put me on a daily half dose of an antibiotic to try to wipe these bladder infections from my system once and for all. I have had at least one bladder infection every month for the past four months, so it was time to take stronger action to make sure I had a healthy body to recondition after my CCSVI treatment.

Two weeks ago today, I began a training program using the athletic track at the local high school. My doctor and physiotherapist recommended I use a walker to reinforce and train muscles that would allow me to straighten my stride and strengthen my legs now that I have improved blood flow. A walker allows me to forget a little bit about balance and concentrate on a smooth gait, with no foot drop and even strides. I haven't used a walker to manage my mobility concerns in the past, so this is something new to me, but one that I quickly realized could help me with my training. Little did I realize that a walker would become a lifeline for me very soon!

The first day on a track, I walked slowly and steadily around for 400 metres. It took me 9 minutes and 40 seconds (I used to run 100 metres in 13.86 seconds in school!). As I said, this was my first time using a walker so I didn't want to push it, so I focused on getting the right muscles working and taking it slowly. I definitely felt the difference walking using a walker versus my typical stagger-step that I do to make sure I don't fall. My doctor said we expend an enormous amount of energy maintaining our balance and encouraged me to use the walker so that energy got redirected into walking itself.

This was first thing in the day, so we went home afterwards and relaxed. After about 1 1/2 hours, I decided I had great energy and could go back to the track for another round. Landon was picking blackberries, so I walked around the house and down to the blackberry patch to find him (something I never do -- this involved walking across uneven lawn for about one hundred metres), then stood for about 10 minutes while he picked the rest of the blackberries before heading back to the house. I even carried a basket of blackberries (for those of you not familiar with this west coast fruit, I will tell you that blackberries are like gold -- especially in a smoothie). I was confident of my balance, although I did remark that it was unusual for me to be carrying blackberries because I so often tripped. The last thing I wanted was for Landon's efforts to be scattered in the lawn!

Landon said he still had some work to do, so I headed to the garage and got some hand pruners. This, again, is unusual for me. Normally, my husband backs the car out of the garage and lines it up with the house so that I don't have to walk to the garage (it's about 30 metres each way). I got the pruners and headed down to our miniature lilac.
Here's a picture of the lilac in full bloom, which happens in May around our son David's birthday, so you know why this tree is so special to me (or at least it was). The pruning was going well until I saw a dead branch high up above my head. I couldn't stand fully upright under the tree because of low branches, so my knees were slightly bent and I was reaching high above my head with my right hand, twisting up and to the left. I felt a pain after a few seconds, somewhere in my legs or back, and sat down on the chair I had positioned behind me. I surveyed the branch I needed to prune and decided to try again. Again, I got a pain after just a few seconds before I had a chance to line up the pruners and cut out the dead branch. I sat down and remember saying to myself "come on, you can do this!" One last time, I stood up and held the stretch/semi-squatting position for a second or two longer than before -- just enough time to snip the dead branch before sitting down once more in the chair. At this point, I had no idea of what was to come.

A few hours later, my right hip started to ache a little, which I attributed to my striding on the track earlier in the day. I was even pleased that I could feel results in my muscles! My husband and I decided to relax in our double hammock , but I remember asking him to give me extra time when we were getting out because my hip was starting to stiffen. In an afternoon bath, I added Epsom salts to the water to ease my sore muscle. Again, I asked for extra assistance getting out of the bath because my hip was getting progressively more painful. By eight o'clock that night, I was starting to be in severe pain.

Four and a half years ago, I fractured a vertebra in my lower back in a fall (T12 for those who are interested!). The pain I was feeling that night after pruning the lilac was very similar. I assumed I had reinjured my back and initiated the same treatment protocol I had used for my previous back injury -- lie flat on my back, legs raised at 60°, and only get up to go to the bathroom. In addition, I started taking Advil for the pain. By nine o'clock the next morning, I had already taken more than a 24 hour dose of Advil and the back pain was no better. This is when I made another mistake...

Last January on a trip to the emergency room, a doctor gave me morphine for my high blood pressure (don't ask -- I only took one pill before another doctor told me it was a crazy idea). But, I had the rest of those little morphine tablets in a little brown envelope sitting by my nightstand. I decided to let a few more hours go by to let the Advil get out of my system, then I popped one of those morphine tablets to finally get some relief from the back pain. In about 30 minutes, I noticed I was itching the back of my tongue on my molars. The last time I had that feeling was when I was having an anaphylactic reaction to taking a sulfa drug. I checked and, sure enough, I was getting hives at the back of my mouth.

On the phone now to the pharmacist, she tells me to take Benadryl (Landon had already fished it out of the medicine cupboard) and talks to me for a few minutes while we monitored my reaction. It was clear the hives were subsiding even before the Benadryl took effect, so I took this as a warning never to take morphine again. But I still had the back pain!

For the next 10 days, I alternated taking Advil and Tylenol (eventually switching to Robaxacet instead of Tylenol) every 2-3 hours. The pain never seemed to respond to the painkillers, although I would start getting more cranky after 3 hours, so they must have been doing something. I used a walker, then had to be pushed in a wheelchair anytime I got out of bed, then the walker again every time I got out of bed to head to the bathroom. It hurt a great deal when I moved, when I attempted to sit up to eat, and especially when I went to sit down on a chair or the toilet. Remember I was in a semi-squat position when I injured myself -- I think that's why it hurt so badly when I started to bend my knees on my way down to a sitting position. My doctor, over the phone, told me I was doing the right thing and to wait it out until the pain subsided.

On the 10th day, Landon managed to get me to my doctor's office. I wanted my doctor to poke around my lower back until I yelled ouch the loudest. It took him a few jabs before he hit the bull's-eye. He said I had torn the muscle leading into my pelvis, basically the lowest muscle that is attached to my back.

So now, I continue to do a little bit more every day, still clinging to my new friend (my walker) to keep me steady on my feet so I don't risk reinjury while I convalesce. I know my muscles have weakened over the past two weeks. Many of the gains I realized from my extra walking and swimming and training since my CCSVI treatment are likely gone :-(

I did some videos so you can see my walking while I explain the situation. The first video (blue top) is from my first day walking outdoors after my injury.

This next video (green top) is essentially the same thing done the next day (today). I couldn't decide between the two videos, so I decided to include them both! This one wouldn't load so here's the URL:

Finally, this video shows you the culprit, my pruning attempt of my beautiful Syringa microphylla:

One other piece of bad news came a few days ago -- after visiting my doctor, we drove for a couple hours to visit my mother for the first time in a few weeks. When we were almost home, my right leg started getting spasms. These are the first spasms I have felt since my CCSVI treatment. For five years before that, I had spasms every day and they were getting worse. These new spasms lasted about 20 minutes, which I guess is an improvement from the hours they used last. But I didn't like it. Over the next two days, I felt short lived, but definite spasms in both my legs. I don't know whether it was the injury that took up a great deal of my energy or the two weeks lying in bed or the long car trip after not sitting up for two weeks, but the possibility of restenosis in one of the 7 locations I had ballooned entered my mind for the first time.

It's now the third day after my car trip and the spasms seem to have gone again. Nevertheless, it's time for my two month update to the Albany clinic anyway, so I have a lot to tell them and even more questions to ask.

In case you can't see the embedded videos, here at the Youtube URLS:
Day 1 on my feet:
Day 2:
Pruning no-no:

Cheers to all,


Friday, August 6, 2010

Walking 4 weeks post treatment

Ok, it's way past my bedtime and I have loads to do tomorrow (agh! today I mean!). So, a quicker update is in order, but the good news is that it contains a new video!

My changes so far since treatment July 7, 2010:
- absolutely no swallowing difficulties whatsoever
- 99% free from anything resembling a spasm (could leg and throat spasms have a common origin...?)
- balance continues to be much better
- foot drop comes and goes -- today was first day in 3 days I could walk without tripping with my left foot (so I celebrated by going for a walk)

- typing with all 10 fingers continues and is improving!
- had several very good bladder days, so promising glimpses of improvements in that area continue

I am busy planning a public meeting with 6 people who have had their CCSVI angioplasties already speaking to an audience of 250 + the media in Victoria. Check back for updates on how it goes and video!

My mind is now determined to focus on looking at this as recovery from an injury and not an illness. My veins were damaged; now, they are fixed. Somehow, that makes it easier for me to visualize a stronger, more capable me.


Monday, August 2, 2010

So long two-finger typing!

Hi all!

I was typing a few days ago and all of a sudden my other fingers just jumped in and started typing without me even thinking about it! Here's a video showing me doing touch typing, sort of, which is typing with all 10 fingers on the right keys without looking at my fingers (i.e., just looking at the screen):

I have been typing with two fingers for 9 or 10 years now and use voice recognition software (Dragon) for longer passages. I used to type 85 or 90 words a minute and even, in a former life, taught typing as a high school teacher! So to be able to recover even a bit of my touch typing skills and use 10 fingers again is amazing. Now that my fingers just started typing the right keys, I will monitor my progress and videotape my typing in a week or so to show you if my skills continue to improve now that my fingers seem to be getting the right signals again from my brain to hit the keys.

In other news, I have been busy planning a gathering for Victoria and area MS patients and caregivers to hear about experiences getting CCSVI treated from me and a few others. We are getting together August 9th at 7pm at Cedar Hill Recreation Centre. This is strictly CCSVI and patient experiences, so no politics or sales pitches allowed! If you would like to go, you need to pre-register as space is limited. Go to:

to sign up. After the event, I hope to post a video.

My improvements over the first 28 days are mostly holding steady, with the addition of the newly found finger dexterity described above. My walking is still better, but it's mostly due to balance I think because my left foot still drops. My balance is so much better - I can walk on slopes without tipping or even feel like I'm tipping, including getting in and out of nearby lakes in the soft sand. Cold drinks still help me get a boost to my walking. My swallowing is still 100% better after spending the past year choking several times a day and the past 7 years choking at least several times a week. I can swallow handfuls of pills at once now when before treatment a single vitamin D pill (and you know how small they are!) would roll around and dissolve in my mouth before it would go down or I spat it out. Finally, my leg spasms -- easily my most troublesome and painful symptom -- have 99% improved. I get glimpses of a spasm beginning now, but quick stretching or toe pointing now relieves the pre-spasm tension and nothing materializes.

That's it for now -- off to do more typing!


Thursday, July 22, 2010

Day 16: Maybe the start of something new?

As you know, my azygous vein got the Olympic gold medal for having 5, yes that's FIVE, stenoses, each requiring a rather uncomfortable ballooning. Well, the azygous drains the spinal column back to the heart, so if my neuro's hunch is correct and I have mostly spinal lesions and spinal symptoms, I should see some improvement in bladder and bowel.

Or at least I think (and hope) so. Eventually.

A few people (Landon, my mother) keep asking about my bladder. They don't mention the other (most people don't talk about it anyway, even if there's nothing wrong). So, here's my answer to them (and you):

I have been using intermittent self-catheterization for my bladder since about 2004. After a few months of disasterous encounters with bladder infections, I switched to using a catheter on every trip to the bathroom instead of just morning and night. That stopped the infections, for the most part, which is ironic -- I needed to use a catheter MORE in order to stop the infections (I am now a pro -- talk to me about it if you have questions).

I loved the freedom self-catheterization brought me. Instead of getting up 15 or more times a night and racing to find a bathroom everywhere I went, I could now control when I went and could sleep in peace. This satisfaction with the process continues to this day -- I am very comfortable using a catheter and managing my retentive bladder that way.

So...when something started a few days ago I wasn't thinking improvement. But it's been a few days and it's still happening so I thought I would mention it. I usually catheterize 100% of the way, i.e., my bladder just sits there and does nothing to help as I use a catheter to empty it. But, in the past 3 days, when I sit down and start assembling my supplies to catetherize, a little trickle comes out all on its own. Maybe only 50mL or so, but that's still something. Or is it?

And I think the volume escaping before I can get to doing it artificially is increasing. It's maybe 100mL or more now. That's beginning to look like I should start measuring this and tracking progress.

But I won't do that until I know it's something...for sure.


Wednesday, July 21, 2010

Day 15: Physio for first time

I was both excited and a little anxious heading into physio at the MS clinic this morning. My physiotherapist knew I was getting the treatment and this would be the first time we met after I got back. My walking post-treatment is always a little more stiff in the morning, almost indistinguishable from pre-treatment days except for the better balance. My left foot drops and I can hear it hit the ground with each step. It's strange that my energy, balance, and walking get better as the day proceeds, not worse like before. I used to get up and know immediately if my legs were going to be able to make it to a doctor's appointment or even from the house to the garage (70 feet). Now, the longer I'm up, the better I feel.

So, a 9 a.m. appointment wasn't at my best hour, but it would give my physiotherapist a good first look at my improvements. It was exactly two weeks to the day since I had been treated. She asked me to list my changes, so I began with swallowing, balance, heat fatigue, spasms... That last one caught her extra attention -- she said "those were a huge problem for you before." Yes, they WERE!

We decided against doing extentive strength testing, after all, it had only been 2 weeks and most of my time had been spent travelling, or so it seemed. So we headed for another major symptom -- BALANCE. Test after test, she would say "that's a great improvement from the last time" or "you couldn't do this test at all before." Finally, I said to her: "how often do you get to tell one of your patients that their balance has improved?" She just looked at me -- I knew what she was thinking.

We finished the appointment doing a bunch of strength building eercises to build up my hip and ankle muscles to support my improved walking. She thought the foot drop was probably muscle weakness and not neurological and that conditioning it, along with my better balance, would see it disappear for good. Just before I left, I asked her for a phone book and showed her I could read the itty bitty numbers without glasses.

Even though my hip muscles were sore from all the exercises, I felt well enough to go to the off-leash area with Landon to take Amber for a walk. We're trying to remember when I last was able to do any sort of recreational walking and we figure it must be about 4 or 5 years. The physiotherapist suggested I try walking with a walking pole to straighten my gait, so here's a video of me trying to get used to it. I think I would have done much better just walking with no pole whatsoever!

I walked aproximately 1200 feet before my left foot started repatedly hitting the ground. We were on grass and dirt paths, so the uneven terrain made it even more difficult. So, we called it quits and chalked up more discoveries of my improving abilities.

I really feel like I am going back in time. Must be at least 5 or 7 years so far...

Tuesday, July 20, 2010

Day 14: Running on energy!

My blood pressure dropped "dramatically" when the doctor ballooned my left jugular vein. He said it was encouraging that it dropped and stayed steady. I have had high blood pressure since 2002 and take BP medications. Yesterday morning, 12 days after treatment, my BP was 106/72. Coincidence? I don't think so.

Just before bedtime, I had 30 minutes outside with Landon in a hammock under the stars. That was blissful, but also chilly. Denise may be queen of "I can jump" but I just discovered something new: I CAN RUN!! I chased my dog down the hallway to warm up (and back and forth 3 times to make sure it was real). Third time I tried pumping my arms and was able to coordinate them too. I had to get up and blog about it -- I'm so excited! Physio at the MS clinic in the morning. Yippee! ~Sandra

Monday, July 19, 2010

Day 13: I dreamed two dreams about my fears

I have been reading reports of others post-treatment having vibrant dreams. I hadn't noticed anything different since my treatment July 7, but I really hadn't been home since then either. Sleeping in hotels and in friends and family homes is all well and good, but it's not home.

So when I got the chance to finally sleep in my own bed last week I thought I would get a more restful night. Not so. I barely eked out a few hours. Maybe it was the shift back to my inclined bed? Home 3 nghts, then off I went to 3 nights away again, with little more than 4 hours each night. Upon coming home Saturday afternoon, I went straight to bed and started sleeping in earnest about 6:30pm. Up at 1am or so for 4 hours, then back to bed for another 3. Last night was more normal -- bed by 1am, awake by 9am. Maybe I can get a normal sleep routine in place now?

An unexpected thing happened these past 2 nights: very memorable dreaming about the capable-me. Not the actual-me, but one who is a bit more advanced in recovery. The first night, I dreamed I was crossing the street at an intersection with my husband and the light started to turn. Without thinking, I ran the last few steps to make it to the other side.

Now, I am not running by any means, nor am I ready to cross intersections by myself walking. I can't look both ways (I would fall over, or at least that's what I assume because pre-treatment I couldn't do it). I can probably make it the distance OK now in a somewhat straight line, but watching for cars is a big fear of mine.

Last Christmas, my friend Lynn took me clothes shopping. She dropped me as close as she could to the shop -- across a busy downtown intersection. OK, I know Victoria isn't exactly Toronto, but it looked busy to me! I was to walk across with the other pedestrians to the shop while Lynn looked for a parking spot. Simple enough? Well, everyone else pulled ahead and it was just me shuffling across the road alone. The light was blibking don't cross and then turned to a solid colour. I had about 15 feet to go and cars were evrywhere -- turning left behind me, waiting to my right to turn right. I looked directly into the eyes of a man waiting on the corner and mouthed the word "help." He sprang into the intersection and grabbed my arm. A woman approaching the corner on the sidewalk ran into the street and grabbed my other arm. I thanked the man and said "I have MS -- my legs just stopped moving." The woman said "I thought so when I saw you struggling, my aunt has MS too." These 2 samaritans delivered me safely to the corner and into the clothing shop with its welcoming chair.

Now, I think this experience shaped my dream of 2 nights ago, where I happily ran the last few strides to cross a busy street. Getting sideswiped by a car while I'm a pedestrian is one of my biggest fears because I cannot watch them and watch the road/my feet at the same time.

Last night, my dream saw me crossing an intersection again. This time, I was with my husband and son David. They were behind me talking and I walked ahead alone. I crossed without incident and walked along the sidewalk. At some point, Landon started filming me because I was walking so well. I came across a path rising up a small hill. I walked up the steep path without difficulty, unaware that Landon was filming me. At the top, I turned to see where the two of them were and saw the camera. Landon challenged me to walk down the I did.

Six months ago, I was going to a business meeting at a new destination. I got there very early to make sure I could find the best parking and get to where I needed to be. I was delighted to park about 25 feet from the front door of the ground level business. I could see inside to the boardroom door where my meeting would take place. Only 25 feet -- what could possibly go wrong? Well, the ground from the parking lot to the front door of the business sloped downwards. Not a lot -- enough to make a glass of water run downhill, but probably not an egg if you cracked it on the sidewalk. A very gentle slope, then, with nothing to hang on to either side. I was paralyzed. I stood at the top of that slope and weighed my options. I could walk ~200 feet to where to parking lot and building were level and then walk back along the building to the front door, but the 400 foot round trip was way too much for my legs to handle. Or I could ask this kind passer-by. "Excuse me -- may I have your help for a moment?" I explained to the fellow and his wife that myMS prevented me from walking the short slope towards the building safely and I needed his arm to make the trip. "Not a problem!" he replied and down we went. Once inside, I rested my legs and drank oodles of ice water so I could make it back to my van on my own.

This dream was probably prompted by my actual-me experience of yesterday, where I walked up quite a sloped lawn about 20 feet, spoke to someone for 10 minutes, then turned to walk back down the slope. I paused -- could I do it? Should I rest first by sitting on the lawn before attempting the walk? I decided to start walking down a sloped driveway adjacent to the lawn and quickly felt confident enough to walk the rest of the way on the sloped lawn and well beyond another 30 or so feet to the house. Obviously, my body is feeling I am overcoming my fear of walking down slopes and is dreaming of even more capable days ahead.

And so am I.

Friday, July 16, 2010

Day 10: Stepping out on my own

I just had the most amazing experience! I went to a bank machine (first time in ~7 years) and asked a customer how to use the darn thing (it's been that long). When I was done, I told her why I needed help and why I could now walk into a bank and stand in line. She hugged me immediately and said "How liberating!" She didn't know about CCSVI, but was so happy for me. Reach out to others - they will support us! ~Sandra

Thursday, July 15, 2010

Day 9: Finding the new me

I'm at a conference still, but I am having zero problems swallowing fancy food every day, I shock myself with my good balance (but I'm still hitting walls from time to time!), and I don't run out of energy mid-step, mid-day or even at the end of the day (MOST unusual). I had glimmers of spasms yesterday, but they went quickly. So ~31years of MS vs. 9 days of seeing every change be a positive one, no matter how small. ~Sandra

Wednesday, July 14, 2010

Day 8: Leaving home again!

Wow, I have more energy and balance; the few hints of spasms haven't materialized; my swallowing continues to be better, dare I say "normal." That said, I have less energy today than yesterday because of another bladder infection (or the same one as before treatment back again??), which normally knocks me onto the couch for a few days (ask Wayne!). Despite this, I'm headed to a conference in Vancouver on my own for 3 days then some visits with friends and family! ~Sandra

Monday, July 12, 2010

Day 6: First day home

We flew home yesterday -- 5+ hours on a plane. No spasms at all during the flight! My swallowing, balance, spasms, and eyesight continue to improve. I did not sleep well Sunday, so no exercising today on my first day home. I just noticed beginnings of a muscle spasm today (but not the spasm itself) in my right leg. My friend (a pharmacist) said the Valium may have relaxed my leg spasms and eased my swallowing, but she assured me any drug effects would be gone by now. The hint-o-spasm is a warning I need rest -- so early to bed tonight! ~Sandra

Saturday, July 10, 2010

Day 4: New eyes!

42 hours and counting with no spasms (leg, swallowing, bowel) whatsoever. GOODBYE BACLOFEN! My legs have old bruises on the quads from me pounding them with my fists to relieve spasms every day for 5 years -- now they are quiet. I swallowed pills 4 at a time yesterday (and can probably do more) whereas before one pill bounced in my throat until the pill dissolved or I spat it out.

768-2443, 864-5844 -- guess what these are? This sounds silly, but I had a hunch my vision was better so I checked the phone book. I CAN READ THE WHITE PAGES WITHOUT GLASSES! A week ago, I was going to get my eyes rechecked because my reading glasses weren't strong enough anymore. Everything's crisper and no squinting. How is this possible? ~Sandra

Friday, July 9, 2010

Day 3: Steady improvement

Road trip today, but still some new developments. Weather better (26 instead of close to 40 degrees.) I forgot to mention yesterday I got dizzy while shopping (I was moving myself around in a wheelchair in and out of stores). The doctor commented how my BP dropped during the procedure, so I wondered if the dizziness was low BP again? Others have mentioned this too after treatment.

NEW today -- I can do 4 heel-to-toe (none before), my finger to nose is perfect, I can stand without swaying, stand briefly (but stably) on one leg at a time, and do deep knee bends. Continuing is the total absence of spasms (maybe a few seconds of the start of one, but nothing happened), and now swallowing multiple pills and moutfuls of food without difficulty. Slow and steady!! ~Sandra

Thursday, July 8, 2010

Day 2: Back to clinic, then shopping!

The most beautiful picture in the world! Indulge me, folks, but I am overwhelmed by seeing this snapshot of my left jugular vein open and flowing:

I shopped all day...ate large amounts of ice cream to stay cool in the slightly cooler (39 degree) heat. Loads of clothes bought, but no shoes! I went for a followup ultrasound and all veins open and flowing. No heat fatigue at all (normally getting dressed in the morning tires me out) and absolutely no spasms of any kind (swallowing, bowel, leg) for the past 30 hours and counting.

Back at the hotel, my son David and friend Ali asked me to jump! It took some coaxing, but I agreed to try. I jumped two or three times, about 1-2 inches off the floor. But I landed without support on my feet!

I stood up from being down on the floor TWICE just now (the first time was because I was 5 cents short at the vending machine and I was hoping to find spare change -- the second time I was just showing off). I haven't stood up without chairs / people / even my dog's back to hold on to for years... 5 or more.

After a full, full day, Landon and I just danced -- note new polka dot dress! ~Sandra

Wednesday, July 7, 2010

Day 1: A New Beginning

I'm done and back at the hotel! Procedure took 1hr 20mins -- left jugular ballooned twice, right jugular ballooned twice, and azygous ballooned 5 times for minor narrowing. No stents!

This is my room during the procedure:

Thanks to my great new doctor and his fabulous staff, especially nurse Michelle. My neck is slightly sore, my feet are pink, and I'm surrounded by Landon, son David and friend Ali running after my every wish. What more could a girl want? We had Pizza Uno in the hotel room for dinner tonight and I had no trouble swallowing it while semi-reclined in bed. Hmmm... Shopping comes tomorrow!