It always feels like somebody's watching me.......

I have been on Long Term Disability for 2 years but now I am cut off and have to re-prove my case that I am disabled from working. I have my appeal in right now with the help of my nursing union and it will go before their medical review board. This is always a frustrating process b/c of course their docs on the board have never heard or chiari zero, cranial settling, elongated brainstem, occult tethered cord or POTS all of which I am suffering with.

I have heard from other people that the insurance company sometimes hires private investigators to stake out your house and catch you doing something you shouldn't and then deny your claim. I just today have become aware that there is often the same vehicle parked just to the left of my front door with a guy in there reading a paper. I have noticed him a few times but thought he must be waiting for the neighbor or something but today it struck me that this is a bit weird that he is always there reading in his vehicle.

I am not doing anything I shouldn't but it still makes me so mad and feel kinda violated that there is someone watching me. I thought of maybe reporting him to the police but maybe its best if I just leave it. At least I know his vehicle so I know when he is around and when he isn't. I found myself watching my rear view mirror all day today when I was taking the kids to school and back to see if I was being followed. This is so creepy.

I think it is so despicable what insurance companies will stoop too. Of course there are so many people that blatantly abuse the system and they are who have ruined it for the rest of us.

I'm Bubbly!!!

This has been new weird symptom week. I have been having another bout of nausea which the Zofran is not really touching but at least I don't have the horrendous stomach cramping with it so I am doing OK eating and drinking enough.

But this week I have developed this buzzing sensation on my neck between the bottom of my skull at the back and my shoulders. I know others have decribed this before and it feels like an electrical current or buzzing. Doesn't hurt but it is really, really irritating.

The other thing is that I had a really weird thing happen while I was sleeping. It's kinda hard to describe and I've hesitated to tell anyone for fear of people thinking I've finally gone crackers.

For those of you out there that faint you might know what I am talking about. When I have fainted and I start to come around I feel "carbonated" like bubbles rising throughout my brain or like major pins and needles. I don't know if this makes any sense but that's what it feels like. Like my brain has pins and needles and it actually hurts and is really unpleasant for a minute or so until I fully regain consciousness. Now I could be wrong but I think this is what it feels like to be hypoxic as in your brain cells not getting enough oxygen. I get this everytime I come to after fainting. I have also had a milder similiar sensation when almost fainting upon standing.

So, back to sleeping the other night. I was minding my own business sleeping and had not taken any different meds then I have for the last year. All of a sudden I was waking up with the carbonated brain or pins and needles feeling and I was drenched in sweat. And I never sweat. The only thing on me that sweats is the right side of my forehead. It has done this ever since my car accident in 1994. But other than that I really don't sweat much at all. The only other times I have be "drenched" in sweat like this is when I am coming out of a faint. At these times I have also been very diaphoretic.

This whole thing makes me wonder what the heck was going on. I did feel a bit disorientated when I woke but then again it was 1:00am. At first I thought maybe I am peri-menopausal or something but 36 is kinda early and then there is the whole carbonated brain thingie. My second thought is sleep apnea as it is the only red flag symptoms that I dont have some degree of yet. I'm not sure what to think about it b/c of course in the morning you start to think "Did that really happen?" Although I'm sure that it did.

I was wondering if any of you out there experience anything similar? I am not going to do anything about this right now unless it happens again. My NS and NL already think I'm being melodramatic and this would put them over the edge I'm sure. I'd love to hear any similiar experiences if you want to share personally by email or with a comment.

thanks!

Healthcare in Canada-A Mother's Perspective

The following are the thoughts of my dear friend Patti who is in a struggle to find decent care and treatment options for her son Matt. Matt has a very similiar collection of diagnoses as I do and they have experienced very similar roadblocks to accessing care that I have. I really appreciated this post that she recently did on the CCI message board so I asked her if it was OK for me to put it up on my blog. She kindly agreed to allow me to include it here. I will pass along any comments to Patti.

Hi everyone I was asked to post this on CCI site for a Canadians
perspective on health care in our country. This is just my own
opinion. I have also included a link to an interesting article from
Mcleans magazine in Canada (kinda like Time)It is discussing the
difference in wait times and access for healthcare for people in
Canada Vs our pets in Canada.

Macleans magazine article

I too am grateful for what is left of our health system in Canada. I
can only speak of our family's experience and I have lived in this
country from coast to cost as a military dependant and spouse. We
have also lived overseas and experienced a couple of other health
care systems

The Canadian health care sytem worked well for my family for the
regular day to day illnesses and health monitoring. Infections,
pneumonia, prenatal delivery and postnatal care etc.
However we have had a very arduous journey of our medical system in
the province of Alberta with my son. He has had symptoms (now
diagnosed with EDS and Chiari) for almost 10 years and have seen
numerous specialists as he has symptoms with his CM 7mm and H-EDS that
compromise many of his autonomic systems.

Canada is a very small population (under 35 million in the whole
country)

If one specialist says no his hernation is not great enough to cause
problems Thats it. Some of our hospitals in Major cities have done
less than 1 CM1 surgery per year.

In Canada you can't shop for specialists as you do in the US. Your PCP
or GP is the gatekeeper. If your family doctor does not do the tests
or refer you to a specialist it doesn't go any further.

We live in a city of a million people and tens of thousands of people
here do not have a family doctor and rely on walk in clinics for
care. Sometimes you wait 18 mos for a MRI, and 10 mos to see a
specialist. Each province (similar to each state) has a different
health care system. It takes over 2 weeks to get into our family
doctor .

Many of our doctors are leaving medicine and closing their practies
due to lack of funding from the provinces. Although the doctor is
paid by the provincial health care system the doctor has to pay for
his office staff his nursing staff and rent etc.

Our extended benefits insurance will not alow you to cue jump and pay
for private services such as MRIs .IF it is offered by the public
health system then you just have to wait your turn. You can pay full
yourself and claim on your income tax.

Our income taxes are much higher here in Canada. Also mortgage
interest is not tax deductible.

IF you find a doctor out of the country such as a specialist in the
US you have to prove that no doctor in the province is able to
perform the required medical service. That even goes for to another
province. You have to get a referral from the specialist in that
field that could not treat you to request the provincial government
pay for the treatment else where.

In my honest opinion there are pros and cons to every health system
in the world .

We attended the ASAP conference in Seattle last year and based on the
information and discussions with CM specialists in the US we found
the information regarding this rare combination of disorders is
lacking in Canada.
We came back to Canada and got some of the testing done here but due
to the wait times and my son's deteriorating health we are going to
TCI and will continue to seek guidance and treatment from those who
have the most experience with these 2 rare disorders.


Pattip, Mom of Son with CM1 and EDS

Mysteries of the Mind

Have a look at this amazing man who can fully memorize and re-create an entire cityscape down to the most minute detail. It is truly amazing and shows how little we understand about the complexities of the human brain.

Urodynamic tests results

Well I just got back from Vancouver and the Bladder Care Centre where I went yesterday to see Dr. Stother to get my urodynamic test results. I guess it's a good news bad news type situation.

One one hand it is good that the testing showed something that supports my Occult tethered cord diagnosis but bad news that I have nerve damage to my bladder.

Dr. Stothers once again proved to be such a great doc. Easy to talk to and acknowledging that I know a lot about my condition. It was really validating to have a doc with this kind of attitude. She showed me the graphs from my urodynamic testing and explained it really well.

A normal graph shows a sharp incline up to about 20mmH2O as you bladder contracts and then you start voiding. It stays up at 20 until you bladder is empty and then drops off. My graph stays at nothing for a long time and then finally slowly climbs to about 10 then drops back off then goes up again to 15 then drops back off then up to 12 drops back off etc etc. My graph looks like small waves and goes on a long time. This is consistent with my experience voiding. It takes forever, starts and stops and I can't empty. Both times I was there they did an ultrasound of my bladder following voiding and I always have a 150-250mls left.

The good news is that although my bladder contractions are weak and intermittent, the pressure in my bladder remains low. If you have high bladder pressure you are in danger of urine backing up into your kidneys and this is very serious. Luckily I don't have this issue. Dr. Stothers states that this could be consistent with tethered cord but is definately originating from very low down on the spinal cord. She said this is not a brain issue of a brainstem issue.

She also mentioned that there is ongoing contraversy about tethered cord surgery and improvement of bladder function. She said the research is still "fuzzy" and is constantly in debate at every urology conference she goes too. In other words tethered cord surgery will not guarantee me a return to normal bladder function. I did know that but I am hoping that it will prevent further damage and I think this fact is less contraversial.

I also asked her opinion on my oldest daughter Sophia who is 8years old. She has had UTI's since she was toilet trained and has been to see a urologist and had all sorts of tests including a voiding cystourethrogram (VCUG) She has a small pouch off of her bladder in which urine collects and leads to frequent UTI's. She has had less since we have concentrated on having her go more frequently and not holding it until the last minute but 2 weeks ago she had another one and was back on anti-biotics. All this investigation was done before I was diagnosed so I didn't know to suspect tethered cord or related disorders.

I asked Dr. Stothers opinion on whether or not it was worth revisiting the issue now that I know what I have or if I am just being a neurotic mother. She said it is most definately worth looking into and she highly recommmends the urologist that we have already seen for her. So I will be making another follow up appointment for her and maybe she will need an MRI to see what is going on with her spinal cord too. I have kinda avoided thinking too much about it as I know she doesn't have symptoms severe enough to require treatment but still I guess it is worth knowing what is going on.

So Dr. Stothers is forwarding my test results to my neurosurgeon who I see in June and she will see me again in 6 months to track what my bladder function is doing.

(the graphs above are of a normal test showing bladder contraction and flow rate)

Long Term Disability Woes.....again

I am back to fighting with my Long Term Disability provider-Great West Life. You get 2 years of coverage and then you have to re-prove your case again. Because it took me 18months to get approved the first time, I only got a 6 month reprieve and now I am back to fighting for it again. I am now officially cut off of benefits and am un-paid....again. It is so frustrating.

The way they work it is the first 2 years you have to be disabled from your own job. And there is no way I could do the 12 hour shifts the endless standing and writing etc. But after the 2 year mark you have to prove that you are diabled from any job that would utilize your education and skills.

I am unable to drive some days due to dizziness and double vision. Being upright makes me tachycardic, nauseated and short of breath and writing (or gripping anything) for longer than 5 minutes gives me severe muscle spasms to my hands. And of course there is the chronic back and neck pain and headaches. How on earth could I work. I really just don't know. I do not feel capable of it. I mean the odd day I probably could grit my teeth and do it but most days I just am not capable of it.

Now I need to relate this to the medical review board. Once again it is problematic to have a rare and little know disorder. I'm sure the docs on the panel have very little knowledge of what I am dealing with and this does not work in my favor. If you have something like MS or cancer right away their is a basic understanding of the symptoms and how they would affect a person. But if you have POTS, cranial settling, an elongated brainstem, chiari zero or syringomyelia everyone is scratching their heads.

My nursing union is handling the appeal for me. There is a woman at the union whose entire job is doing up appeals. She takes all the consult letters and test results and condenses them into a report which is easy to read and understand. I am hoping to hear in the next week or so what their decision is. I am hoping and praying I am not in for another 18 month wait. Financially, this would be very hard.

Zofran Update

OK, so maybe I was a bit impatient. The 4mg definately does nothing...I really don't know why my doc ordered a pediatric dosage for me....but the 8mg did eventually kick in. It took about 2 or 3 hours but it did start to help. Not totally gone but much improved. Now I just have to go back to my doc and get her to order me a proper dosage. I would imagine it will be cheaper to take one 8mg tab then two 4 mg tabs.