Allison, Where Are You?
 

Remembering your beautiful poem.....:hug:

How are you doing? I hope you see this. We sure do miss you, little one. :grouphug:

A Poem by Allison from the UK........Yes, only 13 yrs. old and
she is a member of my MS Support Group, so she does exist
and she did write this poem.. I am sharing it, with her permission.


Why wont you understand?

How can it be that just one day
Could change my life forever
Steadily growing, burning fire
Within me, leaving never

A life so full of friends
A family who'd unite
I hope they'd always be there
To help me win this fight

What started out so positive
Slowly fell apart
School and friends just disappeared
My family broke my heart

My pain is real and constant
Although others aren't so sure
Why should I have to prove to them
This monster has no cure

I sometimes wish I had the power
To let others take my place
To become me for just one day
And see the frustration on their face

Frustration that they cannot share
In normal daily life
Why wind and rain and sunshine
Cuts through them like a knife

I wish my life was just like theirs
Without the need for help
Independance regained, my life restored
Without the need for help

Chronic pain is "secret"
A condition hid away
From those who chose not to look
One I choose not to display

My pain is real, forever here
A reminder of the cost
Of fate and events conspiring
Of my independance lost

Just because I don't look ill
Because i've come this far
Remember that it hurts to not
Ask me how things are

A simple word can mean so much
More than you'll ever know
To know you care, you're always there
Though i've still so far to go.

She is FaceBook friends with me, and has been busy leading the student life. hanging out with friends, laughing and smiling in each new photo she pops up. Several good looking young men have been appearing as well. You would be so proud of her!

I will tell her she needs to pop in. :)

Ali is 14 or so now, on FB, like my own DD did at that age her hair is dyed black, very pretty, had a boyfriend (He looks nice on FB) and looks like a teen.

Hi everyone,

Thank you all for asking how I am and for the nice comments - they are much appreciated :)!

I'm sorry I haven't been round much. Things have been a little tough round here lately. My uncle died of terminal cancer last month which hit my mum and I hard as we were really close to him and I have also developed a condition called POTS where I collapse and have seizures on average 25-30 times a day. It's tough and i'm not able to go out much on advice from my drs as I collapse whilst walking. My mum is looking to get me a referal to another hospital as my doctor seems pretty clueless at the moment unfortunately.

I have had to pack in school and college work because of the collapsing and am now home tutored. It's hard as I miss my friends a LOT but I guess it is for the best. I'm lucky to have a good boyfriend who supports me through my problems (he has Cistic Fybrosis so understands what I am going through somewhat). He has also agreed to look after me whilst my parents have to work so he's been a godsend!

I still try and get out when I can. I go to the cinemas etc and have been to the amusement parks however can't anymore as I find I collapse on the rides.

My Neurologist is wanting to do a Baclofen pump to control spasms that I am having so I am hoping that will help should we decide to go ahead.

I hope you are all OK and I will definitiely post more when I feel up to it!

Take care all of you!
Alison x

Aw Ali,
That sucks.

Thanks for the support, Kicker :)!

I did try posting some pics of what I have been up to when I have been feeling better however they wont work ... i'll try again later.

Lovely to hear from you Ali. :)

But.... so sorry to read that you're still having a tough time.

Am sending you some Koala sized hugs. :hug:

ALI!!!! I am so excited to see you here!

I am sorry you are having issues. its a good thing your mom is a fighter. Hang in there. :hug:

Hi Alli!! Happy to hear from you, but not happy to hear about your
added problems.

Take care, and keep in touch, when you are up to it.

Wishing you all the best

Jappy :hug::hug:

(((*ALI*))), bless you sweety. I'm so sorry to hear about your dear uncle....May he rest in peace. Sending love and prayers for you and your family.

POTS....what a stinky name for an equally stinky illness.:( I hope this is a temporary thing and will leave as fast as it came

I'm glad you have such a thoughtful Boyfriend.:)

Come back and talk to us once in awhile. You will always have our love and support.

Love,

:hug: Ali, I'm sorry about the loss of your uncle. I just hate it that you are having such a rough time right now. Not fair at all what these diseases throw at us. :hug:

Ali,
My kids call me a Facebook Stalker and I am!! Went to your site, could see your pictures and Simon looks like a good guy. The Mom in me is OK now. Though you and your friends are awfully pretty and older looking than I think you should look.

:hug: Ali

so sorry to hear about the extra struggles with health. You sure had enough to handle already! Hoping the doctors are able to determine best treatment and that things get much better for you

Ali sweety, that really stinks. I hope you grow out of it or it goes away.:hug:

Postural Orthostatic Tachycardia Syndrome

Being female protects us from early atherosclerotic heart disease. However, there are some clinical conditions that seem to afflict women in a greater proportion than would seem appropriate.

One group of diseases includes those of autonomic regulation, among them Postural Orthostatic Tachycardia Syndrome (POTS), considered to be a part of the autonomic nervous system dysfunction that includes vasovagal syncope.

In 1944, the first descriptions of a clinical syndrome, which involved orthostatic intolerance, inappropriate tachycardia, and often disabling fatigue, began. Sporadically, over the years, case reports were u\published, and attributed to neurasthenia and various other mechanisms.

Unfortunately, many of the patients affected by this problem were considered, frankly, nuts. However, this is an autonomic dysfunction, where inappropriate catecholamine responses occur, which is very difficult to treat, and seems to have a female predominance.

There may also be a crossover with chronic fatigue syndrome, and in fact, in one of the reports on using tilt table testing to evaluate children with chronic fatigue syndrome six of the seven patients were female.

In a series by Grubb (PACE, 1997), 26 of 28 patients with POTS were female. In many of these cases, the symptoms began after a viral infection, and 3 were associated with endocrine changes, including post-partum and menopausal state.

Many of the patients had gastrointestinal symptoms and in some cases delayed gastric emptying was demonstrated. With tilt testing, venous pooling, inappropriate sinus tachycardia and hypotension were noted. The response to low dose isoproterenol was a heart rate increase, on average, of nearly 40 beats per minute.

This also evoked severe symptoms, even though most of the patients did not faint. The most effective therapy in this group appeared to be fludrocortisone, even though this agent was often combined with beta-blockers or serotonin reuptake inhibitors.

In summary, POTS appears to be an autonomic disorder characterized by inappropriate catecholamine response to orthostatic stress, often triggered by viral illnesses or other physiologic stressors, and with a particular female preponderance.

http://www.womensheart.org/content/H...rrhythmias.asp