Physical Disability & Self-Esteem: Life As It Is Now, Coming To Terms, Rising Above

[micpfef]

http://www.schering-plough.com/scher...t_programs.jsp

Another link for the drug company directly.
Quote: Patient Assistance
Schering-Plough assists patients in securing drug reimbursement as well as providing lifesaving drugs at no cost to people with low incomes through our patient assistance programs.

Informal patient assistance programs have been in place at Schering-Plough since the early 1980s. Today, patients can apply for assistance through two programs: Commitment to Care (1-800-521-7157), which covers our cancer and hepatitis drugs; and SP-Cares (1-800-656-9485), which includes our other prescription drugs. In 2005, these programs provided nearly 120,000 patients with more than $127 million worth of free Schering-Plough products.

Patient Support
Be In Charge is a free patient support program designed to provide education and support to people diagnosed with hepatitis B or C who are either not yet on therapy or who are receiving Schering-Plough's PEG-INTRON (peginterferon alfa-2b) Powder for Injection and INTRON A (interferon alfa-2b, recombinant) for Injection, or INTRON A therapy.

People enrolling in Be In Charge benefit by having access to specially trained nurses and educational materials to help them understand their condition and its therapy. If participants choose, a personal nurse counselor will be assigned to them who will call them periodically to answer their questions and encourage them throughout their therapy. Participants who wish will also receive educational materials with tips to help them remain on therapy. Be In Charge has helped thousands of people since its inception.

To find out more about Be In Charge, call toll free: 1-888-437-2608.

All of Schering-Plough's patient assistance and support programs are administered on behalf of the company by outside organizations. Patient eligibility for Commitment to Care and SP-Cares are determined case by case based on financial and insurance criteria. Schering-Plough reviews its patient assistance and support programs periodically to ensure that they are meeting the needs of both patients and the physicians who treat them.

[Shyfemmekat]

Hello everyone!!
I apologize for not being around much. There's a lot to report from this neck of the woods. Shy-I am so with you on hitting the funk!!! I don't know if its the impending holidays, or just a cycle within me, but I have struggled lately. It seems like I have had every little cold bug, and had a good bout with a sinus infection/bronchitis/ear infection, and pink eye to boot!! It seemed as if the inside and the outside matched. Anyway....here's the update. I certainly hope you will lift these folks up, as they certainly challenged right now.

A good friend was diagnosed with breast cancer for the 2nd time. This cancer is different than the last bout, and more invasive. She was my birth coach with my son, and has seen me through many times. I hope to be a support for her as she continues this journey.

The other youth director at my church was also diagnosed with breast cancer. While in the hospital to start chemo, they learned it has already spread to her lungs. She is strong of faith, and will do whatever God's will. It has still been tough without her around.

Another member of the church lost her partner after 33 years. Riley and I checked on her every day, and did extra cooking for she and her partner's family on Thanksgiving.

A good friend was diagnosed with brain cancer in October. She had surgery, and the initial pathology was the tumor was benign, but being ever careful, they sent the entire tumor off to be checked. Johns Hopkins found that 6% of the tumor is grade 3, a more aggressive type of cancer, and she would need radiation for some time. After doing further study they had good news and bad news. Good news is it responds to chemo, the bad news is she has to take chemo as well. She is 37 and had a little baby girl 2 weeks before her brain surgery. She is coming into the heighth of her side effects, and is extremely tired. She has been a major support to me, and I have started working as her personal case manager. Our first hurdle are her medications. She is on disability, but is married, and that cuts her check drastically. When she and husband went to pick up the meds from the pharmacy, the COPAY was over $800!!! The drug itself "(Tamedor) cost over $8000 a month !!! Has anyone worked with SSI and catastrophic illness? We're appealing medicaid, because she can't pay for the meds at this rate. Any help is appreciated!!

I do hope this finds you all with more positive news. I have missed chatting with you all. This group has remained in my prayers. I love you all!!!

It is good to hear from you!

I definitely agree that, (re: Tamedor), to call the American Cancer Society to help advocate. I know the MS Society will do that for members, and someday if I have to use that I will! If she still has trouble with her appeal then I would contact her state rep and senator maybe and expain that she is having trouble getting something she needs.

I will definitely add them to my prayers. Being sick sucks.

Hugs,
ShyFemmeKat

[Woodie69]

Hi Everyone,

I just got test results back from yet another Cat Scan of my lower abdomin (sp??). The dr said that I have huge calcium deposits that are everywhere. She has never seen someone with this sort of thing before, and isn't sure of where or why they are forming. My liver is fatty (but that is because I am overweight). And my kidneys are swollen. My dr is going on vacation, and when she returns next week I have to go back to see her to find out the next course of action. At least I know that I don't have anymore kidney stones to be concerned with. Those things are so incredibly painful.

My mood is getting somewhat better, but not by much. I think it has to do with my hormones being bounced around. One minute I could just cry, and the next I am just sad. I already have a high t level in my body, but when I get my monthly, the estrogen just throws off my t levels making my mood horrible = according to an endocrinologist.

I am anxious to have my hand surgery soon. I think I am going in the hospital the week before Christmas. I have to wait next week to see what the ortho. surgeon says. I also have my hearing next week as well. I am tired of taking Darvecet and Naproxen for pain and swelling. The meds are just not even taking the edge off.

Rosie is concerned because I haven't been myself lately. She knows how I am, and tells me when I am "slow" and when I really need to stay home vs. being out and trying to run errands for her. God bless her heart, she made a wreath for my Grandparent's grave, my brother's grave, and an extra for a stranger's. We always take something for someone else's grave. Just because it is the right thing to do for us.

Hope everyone is surviving the holiday season with a smile.

Much peace and love to all,
Andrew

[DAYWALKER]

Ever been tortured by your own inner personalities?
MS comes with a list of perks and bonus rounds...
Losing yourself within yourself is one of them.
Sometimes...it is all I can do to keep an eye on myself.
What sucks the most about that?
Having to maintain while doing so.

[Shyfemmekat]

Ever been tortured by your own inner personalities?
MS comes with a list of perks and bonus rounds...
Losing yourself within yourself is one of them.
Sometimes...it is all I can do to keep an eye on myself.
What sucks the most about that?
Having to maintain while doing so.

If you know the song, sing along...

"Me, me, me, me, me..."

Some of you on here know that I have PTSD. What I have not shared, until now, is that I am also in the process of being diagnosed with a mood disorder. I have mood swings that are unbelieveable and have struggled with depression for about thirty years now. Mental stuff can go along with MS, here is a neat link about it, look about halfway down the page where it says "Cognitive".

Multiple Sclerosis Symptoms:

http://www.mult-sclerosis.org/mssymptoms.html

Quite a listing: depression, mood swings, emotional lability, bipolar syndrome, anxiety...to name a few. As if all the physical stuff that is part and parcel with our condition wasn't enough. (femmie snarl)

Here is an interesting article about MS and bipolar, put out by the Canadian Psychiatric Association:

The Neuropsychiatry of Multiple Sclerosis

http://www.cpa-apc.org:8080/Publicat.../feinstein.asp

I have been struggling a great deal lately with the mental and emotional aspects of my life as of late, far more than any physical aspect. Some days are very dark indeed. I have begun really delving into the spiritual, in need of real comfort when my mind becomes troubled. In a book I read recently, the authors talked about preacher Charles H. Spurgeon, who struggled with debilitating depression for years. Over time he noticed that following periods of severe depression he was able to produce some amazing work. He came to see his periods of depression as a sign that God was beginning a great work in him which changed his attitude about it. I am trying to bear that in mind myself, that someday, having gone through these things I might prove of some comfort and benefit to someone else.

Hugs,
ShyFemmeKat

[DAYWALKER]

I am trying to bear that in mind myself, that someday, having gone through these things I might prove of some comfort and benefit to someone else.

You have done so, and still do so every single day Miss Shy...
I can count quite a few through out this thread alone!
Just had to make sure you knew that.

~~~~~~~~~~~~~~~~~~~~~~~

Personality Disorder is one of my favorites.
Lol...why, you ask?
Could it be the degree of difficulty involved...lol?

Actually, no...because no one thrives on mental struggles. However...lol, does anyone remember going to the skating rink when you were young, and a voice over the loud speaker announces "It's All Skate...!"...? This is what happens to me in the attic of my mind...lol, and every one of me hits the rink for a good time. Problems is...lol, they take over at random and the erratic behavior begins...lol, and I (we...lol) am fully aware of it! Night before last, when I posted in here...lol, "we" were at the keyboard. There comes a time when I should just know that it will be like drunk driving at the keyboard...lol, and should probably not outta post during those times. Some really profound stuff starts pouring out. Add to that, the fact that I also had a rare moment when I was partaking in some fine wine as well...lol, that just made it even more fun. Like a color wheel...on the rink, my moods will swing a bit back and forth all within moments of each other. Tough to keep a handle on it...and when I loose it and hit the guardrail, the anger shows up to assess my situation...and scares the rest of them off the rink. But then, the masses creep back, knowing they can all gang up on the anger...make it subside, and force it to smile with them as they drive my mind color fucking crazy. Then, apparently..."we" needed to have a talk with ourselves.
I went into the 9 word poetry thread and this is what came out:
~~~~~~~~~~


Titled: State of Grace.....

Torture~Demure~State~Grace~Many~However~Piece~Received~Hand

Torture me
as you will
It's not so simple
I won't take a pill
Do as you will
Just leave me
myself
before you go
In one piece
In a state of grace
There are so many of you
What shall I do?
Cave in
Cave to the masses
When it is over
I will be left
with me again
I will
however
remember every moment
Every single wretched thought
Just leave me
in one piece please
Just leave me
Why
Why do I have to endure
your every warped thought
your every moment demure
Others can see you
dammit
can't you understand
You leave me naked
and remove
my upper hand
Please
Leave me now
But please
leave me the way I was
before you came
Message received
I will comply
when you land
Meanwhile
Take the ride
you understand
It's not you that sees
It's the others
That live inside
of me





See what I mean?

Lol...then I went into the "What questions do you ponder in the middle of the night..." thread...lol, should probably not have done that either...and here are the results of that venture:
~~~~~~

Why do the darkest of clouds seem to move faster than the wind itself?
Is there an itinerary so important, that darkness must get there first?
Why does the sky cry just after the sky turns light again?
Does it miss the darkness; was the darkness protecting the sky from the view
of all of us...and the havoc we create in the sphere's above it?
Are the clouds of light morphing to distract us from what darkness looms...?
Lower than the light, is the fastest moving darkness.
A sense of urgency to protect the light.
How profound to humor the idea; that darkness in some
worlds...indeed is the protector of the light.



~~~~~~~~

Another fine example of when not to drink, skate, think...lol, and type all at the same time! I knew, Shy...that you of all people would totally understand this occurrence. I jumped into this thread that night...as a safety zone you might say. Just had to share all of us...lol, and there was nobody in here...lol! Then, it took a whole day for anyone to post in here again...lol, and I thought; Oh, shyt...lol, we've killed the thread! Anyways, I thank you Shy, for responding with your state of grace and understanding of all thing MS and the Mind.
You (all of you...lol) Rawk!

[BlueMoonWolf]

Shy & Daywalker,

Does it ever make you wonder how much the mental health issues can be laid on the doorstep of MS (or any other disease). I mean well of course we all go through depressions... I don't think we would be normal if we didn't. We have a lot of shyte to deal with on a day to day basis that is always a challenge.. and some days we just aren't up to the challenge.

How many of us were told for how long that what we were feeling was all in our heads and we needed a mental health professional over a health professional that actually could figure out what was going on with us? I know for me there were plenty of times that I almost bought into the idea that it was all in my head and then something would happen and I knew deep down that something was wrong and it wasn't in my head. I knew then I wasn't crazy.

Yes I fully realize there is a difference between a mental health issue that is unrelated to a disease and one that is. It's a crap shoot if that is going to happen to us or not. I know that the mental health part is one of the things that i am utterly terrified of happening.

Just to sound all new agey and crap.... maybe we get dealt the mental health issues to make us strong enough, or yes just crazy enough, to be able to deal with the physical stuff?

[OutlawDaddy]

Hi Folks, Just Checking in on Everyone, the Ever Expanding Holiday Season Is upon Us...just a Quick Reminder to Stay Well Hydrated and out of Your Local Malls! Lol.
I Have Rules to Live by for the Holiday Season (Otherwise Known as a Dark Slippery Slope from Halloween Through the New Year to the Feast of La Befana (Jan 6th)
Nap Often, Love Much
Layers Are Your Friend, Cotton and Wool, Your Top 2
Cover Your Noggin, (Too Much Body Heat Escapes Form Your Head) If the Calculation Is Relative to the Size of Your Head, I'm in Trouble Folks) Hats, Hats, Hats (One Size Fits All Is a Bunch of Bs) IMHO
Water the Tree, One for You, Water Yourself, One for Me
String the Lights, Strangle the Consumas
Set Indulge Dates, Save up for the Day after Agony
Divide Your Plate into 6 Pieces and Decide Before the Party What Will Go in Each.
Give Gifts from the Heart and Buy Them On-line
With Love, SantaDaddy

[DAYWALKER]

Just to sound all new agey and crap.... maybe we get dealt the mental health issues to make us strong enough, or yes just crazy enough, to be able to deal with the physical stuff?

Exactly...lol, which is why I said it is one of my favorites!
It is my mind on vacation, my selves in recess...it is totally necessary for me...lol, and to me it is comparable to a "re-boot"...ya know? I must appreciate the fact that I am a bit warped...otherwise, how else could I deal with this poker hand of mine. I know when to fold em'...lol, the hard part is getting the rest of me to agree...yes? Studies show that we (MS'ers) are 10 times more susceptible to major depression and 'off kilter' types of behavior...and for me, the depression is tolerable and I came 'off kilter' by default already.

Bonus round #147...lol, Chapter: Pink Floyd; paragraph 5150 says:
Allow yourself to stray from the path with the rest of the loonies, have a picnic on the grass, read the paper backwards...then get back to the path when the party is over.

[Shyfemmekat]

DAY, you are a rare jewel indeed.

And now for a total non-sequitur...I saw a T-Shirt that brought you to mind last week...

Offworld Designs
http://www.offworlddesigns.com/

Use search phrase bats to find...
"I'm so dark I fart bats."

Hugs,
SFK

[Shyfemmekat]

Much sound advice there, OD. Have you bought Beakie a SantaBird hat yet?

SFK

[DAYWALKER]

DAY, you are a rare jewel indeed.

And now for a total non-sequitur...I saw a T-Shirt that brought you to mind last week...

Offworld Designs
http://www.offworlddesigns.com/

Use search phrase bats to find...
"I'm so dark I fart bats."

Hugs,
SFK

Lol...thank you Shy.

When I start farting bats,
I will order one of those shirts for everyone in here...lol!

[WolfiEyes]

Sending light and to all on the thread

JJ

[Shyfemmekat]

Shy & Daywalker,

Does it ever make you wonder how much the mental health issues can be laid on the doorstep of MS (or any other disease). I mean well of course we all go through depressions... I don't think we would be normal if we didn't. We have a lot of shyte to deal with on a day to day basis that is always a challenge.. and some days we just aren't up to the challenge.

How many of us were told for how long that what we were feeling was all in our heads and we needed a mental health professional over a health professional that actually could figure out what was going on with us? I know for me there were plenty of times that I almost bought into the idea that it was all in my head and then something would happen and I knew deep down that something was wrong and it wasn't in my head. I knew then I wasn't crazy.

Yes I fully realize there is a difference between a mental health issue that is unrelated to a disease and one that is. It's a crap shoot if that is going to happen to us or not. I know that the mental health part is one of the things that i am utterly terrified of happening.

Just to sound all new agey and crap.... maybe we get dealt the mental health issues to make us strong enough, or yes just crazy enough, to be able to deal with the physical stuff?

In my case part of the mental health thing came years before when PTSD was born, but I fear this new & improved (NOT) mood part is due to MS. I already have some aphasia, which sucks. I say "Halloween" when I mean Christmas. Not good for a public speaker.

I am waiting for clearance to have a battery of neuropsych testing done so (hopefully) we can determine what the MS mice have chewed up and what is due to the other fun that I carry around. Quite a dealio to get it together, they do it at a local rehab that is outstanding in their work with the brain injured. They did wonders with my dad who'd had strokes:

Hook Rehabilitation
http://www.ecommunity.com/hookrehab/

Has anyone had that done? Curious....

And no, BMW, doesn't sound New Agey to me at all. Sounds very sensible.

SFK

[Shyfemmekat]

Lol...thank you Shy.

When I start farting bats,
I will order one of those shirts for everyone in here...lol!

LOL, they are on clearance for $7.50...

SFK

[MiamiButch]

Oh,, how I can SOOO relate, Tx! I still try to do things that I could do before being in wheelchair, to the point of STUPIDITY. Just the other day, I took a really nasty tumble down the escalator from the second to the first floor of the mall. I'm here thinking to myself, "Hey, I'm feeling good, I'm feeling strong, and I just KNOW I can do this" What I forgot is that GRAVITY WORKS! I lost my grip, and tumbled head over heels to the bottom, where my head bounced off the iron plate. Luckily, I have a cement skull! lol I laugh about it now, a week and two days later, but at the time I was "Jeez! Talk about a Deetdeedee moment! I should KNOW better! I'm not Hercules or anything like that!" Lucky for me, I'm a big boi, and all the extra padding saved me from breaking anything that I may need later. Every day it's like that, I keep thinking I can lift, pull, walk with and generally be the person that I was before my legs got this weak. Sometimes I cry out of sheer frustration because I can't walk anymore than perhaps a quarter of a block, and that in pain. I'm tired of having my friends look at me with pity, because they remember how I USED to be, strong active, loved to dance and swam like a fish. I still swim on occaision, but now I'm more like a manatee than a fish. And I feel weird asking anyone out on a date, because I'm scared of their reaction to my being in a wheelchair. I sometimes wonder why the hell I just don't blow my brains out and save myself the heartache of getting progressively worse. Then I remember that God spared my life for a reason. And He's done it a few times, not just once, so He MUST want me to be here for SOMETHING. I guess the hardest part for me is looking back and remembering what I used to do and looking at myself now and seeing the limitations. When I start getting morose and maudlin about my situation, I tell myself that at least I have some really good material if I ever decide to do stand up (Or in my case, Sit down) comedy! lol Life is rough sometimes, and sometimes a person's body and situation change unexpectedly, and it is in those moments that we have to have faith and a sense of humor. I know that my being able to laugh at myself and the world and ppl around me and the things that they do, well, that's kept me going. I always tell myself, "Ok, you're a little screwed up, but there's SOOO many ppl out there who are MUCH worse. So get off your fat butt, smile and keep going!" My limitations are only an incentive for me to try even harder. Life can be vicious, but then again, I have been known to be a real PITA too, So, Remember, when life throws you lemons, grab a couple, make yourself some lemonade, and then sit back and throw the rest RIGHT BACK! lol
*PITA... Pain in the Azz. lol

Shy and MountainGirl - you both have posted beautifully and I thank you for sharing. It is the most incomprehensive situation for me, as a stone butch, raised like a son, taught 'you can do anything you put your mind to', that now, the 'me' after diagnosis, isn't that same person. I am still bull-headed and think I can still do things, yet some days, hell, most days, I don't win the battles. It isn't about ego either - it is about personal satisfaction, happiness - when I feel limited I am unhappy. When I feel weak or controlled by someone or something other than myself, I rebel. So many similarities, so many different facets... by the way, I love how you both handled the idiots!
Thank you ladies!

[TopDadddy]

What's sometimes really annoying for me is that I look fine, but feel like crap sometimes, or am in such a fog I'm barely functional, but yet people will think I'm just fine. Of course it probably doesn't help that I'm the master of disguise. Over the past year I've been working on this one though, like just saying I don't feel good today, so people around me know. They can believe it or not, it's just the way it is. Ugggghhhhh

On the other hand I have some great friends and family who help me out when I'm like this

Hang in there everyone

~TD~

[Woodie69]

Hi All,

I have PTSD, and Depression. I have been battling Depression for years. Mine is linked to my head injury (most folks who suffer from any sort of head injuries suffer from depression) and then my hormonal system. I hope and pray for cures or something other than antidepressants to help battle the disease. I know that the medical research community is working with magnets, and a electronic stimulation implants. They have had a very decent result record with those who have Parkinson's Disease, and Tourette's Syndrome (with the tics).

Shy,

Neuropsych testing will be a welcoming experience for you. I know that my experiences have been positive. The results will help you. I have no doubts about that. I hope and pray you get them asap. BTW, Hook Rehab. is in Indiana. I never even heard of that place. When I was a youngster, I suffered from mini strokes all the time. Usually one a year, but they weren't significant enough for anyone to be able to do anything about them. I do believe that suffering from any sort of stroke, no matter your age, that the stroke does leave its nasty mark on your mind, and body in some form.

Outlaw Daddy,

Thank you for reminding me of those things. I think that is a great list to remember.


Love and peace to all,
Andrew

[DAYWALKER]

Hi All,

I have PTSD, and Depression. I have been battling Depression for years. Mine is linked to my head injury (most folks who suffer from any sort of head injuries suffer from depression) and then my hormonal system. I hope and pray for cures or something other than antidepressants to help battle the disease. I know that the medical research community is working with magnets, and a electronic stimulation implants. They have had a very decent result record with those who have Parkinson's Disease, and Tourette's Syndrome (with the tics).

Shy,

Neuropsych testing will be a welcoming experience for you. I know that my experiences have been positive. The results will help you. I have no doubts about that. I hope and pray you get them asap. BTW, Hook Rehab. is in Indiana. I never even heard of that place. When I was a youngster, I suffered from mini strokes all the time. Usually one a year, but they weren't significant enough for anyone to be able to do anything about them. I do believe that suffering from any sort of stroke, no matter your age, that the stroke does leave its nasty mark on your mind, and body in some form.

Outlaw Daddy,

Thank you for reminding me of those things. I think that is a great list to remember.


Love and peace to all,
Andrew

Hello Woodie.

Hope you & yours are doing well.

Electro magnetic treatments also assist in balancing the hypothalamus for MS patients. Keep our inner core temps from spiking erratically like mine did this month for 2 weeks. Lol, man you wanna talk about bullshyt...5 to 6 degree, up and down spikes in as short as 15 minute intervals at random.

Exhausting I tell ya...lol!

[Woodie69]

Hello to you and your Mrs.!

I have to admit that I am wondering if I have some form of MS. Alot of the symptoms that you guys all talk about all the time are pretty much what I have endured for a good bit of my life. I am 43 yo, but have a massive, undeniable head injury. If you look at any of my CAT Scans or MRI's of my brain, you can see the damage on my left temporal lobe. It is just that obvious.

I think that is going to be something that I talk about during my next visit with my neurologist. He is a MD with a PhD in neurology and psych. Is there anything that you can think of for me to say to him when I see him next? I usually have to write things down before I go talk to anyone because my memory is really bad.

Let me know your thoughts or anyone elses for that matter.

Thanks.

Andrew

[CalypsoTheNymph]

I understand a lot of what has been said ...

I have had trouble with my legs for years ..... aching a lot and difficulty walking ..
not all the time but at times however now I am having to use my cane full time
and use my wheelchair when I am going shopping or somewhere where there
is a lot of walking ... and some days I have to use it just because it is
simply too hard to walk ...

I don't feel sorry for myself although I wish I could go like I use to ....
I know things could always be worse .. for instance just a couple of
weeks ago a lady at dialysis had both of her legs amputated ...
one above her knee and the other one right below ... so even though
I can barely walk some days I think of her and try a little harder ...
not just for myself but for all of those who wish they could walk
with difficulty ... I know when we are going through stuff it feels like
it cant get any worse but it can ... there is always someone worse off
then we are .....

much love to you all

~Lily~

[Shyfemmekat]

Well, UPS brought my info today. Here's the drill thus far:

Sun 12/18 -
Leave Home, Fly to Pittsburgh
Leave Pittsburgh, Fly To Nashville
Check into hotel:

Nashville Hilton
http://www.nashvillehilton.com/index.cfm

Mon 12/19 -
Partnership for Prescription Assistance Holiday Event with Montel
Immediately following that the powers that be have decided I am to shoot a commercial immediately afterwards. Eeeek.

Tue 12/20 -
Leave Nashville, Fly to Charlotte, NC
Leave Charlotte, Fly home

Take dog out, pet cats, shower, collapse.

Please, if you are of a praying nature, please lift me in prayer. I am very nervous about this commercial shoot, I knew nothing about it until about six hours ago.

Best,
ShyFemmeKat

[Holliday]

Hi, everybody! I'm a very latecomer to this thread.

I've been enjoying reading what I can thus far. Personally, I have two big issues that affect my life. One, some limited mobility from a broken leg last year. I know it doesn't sound like much, but I've had chronic tendonitis since then and I've walked with a cane off and on. My balance is sooo off, and stairs (or those tall bus steps) cause shooting pain. It's been very hard for me because I have always loved wearing high heels, and dancing, and now I have to limit what I wear. I'm starting a nice kitten heel and boot collection, though. I have an on-and-off again burlesque career, and I've managed to get back into it (first on crutches, and then a little limpy and without all the floorwork). I think the toughest thing has been having to step back when I'm out dancing, and acknowledging that I need to stop and give myself breaks. And people who don't know me have no idea how I feel (physically or emotionally) unless it's a cane day. Argh.

I also have untreatable migraines that come up, oh, 10 to 20 times a month. I've been on all different meds, and have permanent side effects from some of the anti-seizure ones. My concentration and thought-processing skills are not at all what they used to be. I feel like a dumbed-down version of myself sometimes. And I don't know if it's better to suffer through the life-disruption and pain of migraines or feel all out of it on the drugs. *sigh*

Thanks for listening to me rant a bit. I needed a place to do it where I wasn't afraid of being seen as whiny or needy or anything.

Holliday
xox

[lionandlamb]

Shy-I can't think of someone I would enjoy more on a commercial!! What a blessing you have been on so many levels!! I'll keep you in prayer for sure! I wish I was closer and I'd come see you in Charlotte! Its the closest you've come to my neck of the woods!!



Holliday!-Welcome to the thread. I'm sure you'll have a bunch of replies soon. I have had both knees reconstructed and understand the limp. I swell without warning, and can predict weather with them. I also have bad migraines from a bout with meningitis a few years back. I take zonegran on a preventative measure and have imitrex injectible for the headaches themselves.



please know you are welcomed with open arms here!!

[Woodie69]

Whistling at Shy! I knew you were an actress in disguise. And now everyone all over the world will know that too! WooHoo! Just keep us posted on how everything is falling into place. You know we are your own rooting section!

Holliday,

Welcome to our slice of heaven! I hope you enjoy yourself and have fun here. We talk about everything and anything. We all support each other as best we can, and try to love each other unconditionally. Yes, at times it is very hard. But so is forgiveness. Just remember that there is power in forgiveness. Also, feel free to vent as much as you want too. We all do it from time to time. They all know that I am very guilty of venting at least once a week if not more (hehehe).

LionandLamb,

I am glad to see you around! I hope all is well with you and your babies.



Much love and peace to all,
Andrew

[Holliday]

Shy-I can't think of someone I would enjoy more on a commercial!! What a blessing you have been on so many levels!! I'll keep you in prayer for sure! I wish I was closer and I'd come see you in Charlotte! Its the closest you've come to my neck of the woods!!



Holliday!-Welcome to the thread. I'm sure you'll have a bunch of replies soon. I have had both knees reconstructed and understand the limp. I swell without warning, and can predict weather with them. I also have bad migraines from a bout with meningitis a few years back. I take zonegran on a preventative measure and have imitrex injectible for the headaches themselves.



please know you are welcomed with open arms here!!

Thanks, Woodie & LionandLamb! I'm always interested to hear how other people with migraines are getting treated. I'm on zonegran right now, but a super-low dose compared to what I had been on. I can't tell if it makes a difference, but what they hey? I'm too scared to go off of it.

Holliday
xox

[Woodie69]

Holliday,

I take Relpax for my migraines. I also am on a daily dosage of an antiseizure medication that also is used to treat migrains as well, but cannot think of the name of it right now. I know for myself, I have to lay down in a totally dark room with no noise. I have the migraines that start off with a light that moves, and my head just hurts so incredibly bad. Rosie bought me an herbal eye blindfold that I use. It really does work for me. She got it at a new age herbalist shop in town. Once a year I get replacement herbs for it.

Good luck with this. I know how painful migraines are.

Peace and love,
Andrew

[Holliday]

Holliday,

I take Relpax for my migraines. I also am on a daily dosage of an antiseizure medication that also is used to treat migrains as well, but cannot think of the name of it right now. I know for myself, I have to lay down in a totally dark room with no noise. I have the migraines that start off with a light that moves, and my head just hurts so incredibly bad. Rosie bought me an herbal eye blindfold that I use. It really does work for me. She got it at a new age herbalist shop in town. Once a year I get replacement herbs for it.

Good luck with this. I know how painful migraines are.

Peace and love,
Andrew

Hi, Woodie69. Thanks for your advice. Do you happen to know what the herbs are? I know a couple of places where I can buy various herbs in bulk, so hypothetically I could sew up my own eye thingie.

[Woodie69]

The holidays are here once again. This can be a time full of joy, cheer, parties, and friends/family gatherings. However, the holidays can also be a time of year that can lead to stress or depression for alot of people. I know and understand this fact so well. It is also the time of year with the highest rate of suicides.

There are many factors that cause the "holiday blues". These include the following:
stress
fatigue
financial constraints
unrealistic expectations
demands of shopping, parties, friends/family gatherings
increased housework

Coping with the Stress & Depression During the Holidays:
*Set and keep realistic goals. Make a schedule and stick with it.
*Ask for help from others when you need it.
*Try volunteering.
*Celebrate the holiday season in a new way - try something new. Create your own holiday rituals and routines.
*Make time for yourself & recharge your batteries. Let others share responsibility of activities.

If the holidays get to be too much, you know you can call someone. Nobody here is an island.

Much love and peace,
Andrew

P.S. Holliday, I have no idea of what the herbs are used in my eye thingy. I usually just go in and ask the saleslady for help. She smiles at me, and reloads it for me. It really does smell good - a sweet smell. I would go in and ask. Maybe they have one already made up so you could just buy that one, and then ask about having it reloaded yearly (or if they could write down what herbs are in it). Try it out, and see if it works. I know that in some places this eye thingy can be expensive.

[Shyfemmekat]

Hi, everybody! I'm a very latecomer to this thread.

I've been enjoying reading what I can thus far. Personally, I have two big issues that affect my life. One, some limited mobility from a broken leg last year. I know it doesn't sound like much, but I've had chronic tendonitis since then and I've walked with a cane off and on. My balance is sooo off, and stairs (or those tall bus steps) cause shooting pain. It's been very hard for me because I have always loved wearing high heels, and dancing, and now I have to limit what I wear. I'm starting a nice kitten heel and boot collection, though. I have an on-and-off again burlesque career, and I've managed to get back into it (first on crutches, and then a little limpy and without all the floorwork). I think the toughest thing has been having to step back when I'm out dancing, and acknowledging that I need to stop and give myself breaks. And people who don't know me have no idea how I feel (physically or emotionally) unless it's a cane day. Argh.

I also have untreatable migraines that come up, oh, 10 to 20 times a month. I've been on all different meds, and have permanent side effects from some of the anti-seizure ones. My concentration and thought-processing skills are not at all what they used to be. I feel like a dumbed-down version of myself sometimes. And I don't know if it's better to suffer through the life-disruption and pain of migraines or feel all out of it on the drugs. *sigh*

Thanks for listening to me rant a bit. I needed a place to do it where I wasn't afraid of being seen as whiny or needy or anything.

Holliday
xox

I just wanted to take a moment to welcome you. We are glad you are here! This is a place of safety and support for all. I look forward to reading more of your posts!

ShyFemmeKat

[~LadyJane~]

Hi, everybody! I'm a very latecomer to this thread.

I've been enjoying reading what I can thus far. Personally, I have two big issues that affect my life. One, some limited mobility from a broken leg last year. I know it doesn't sound like much, but I've had chronic tendonitis since then and I've walked with a cane off and on. My balance is sooo off, and stairs (or those tall bus steps) cause shooting pain. It's been very hard for me because I have always loved wearing high heels, and dancing, and now I have to limit what I wear. I'm starting a nice kitten heel and boot collection, though. I have an on-and-off again burlesque career, and I've managed to get back into it (first on crutches, and then a little limpy and without all the floorwork). I think the toughest thing has been having to step back when I'm out dancing, and acknowledging that I need to stop and give myself breaks. And people who don't know me have no idea how I feel (physically or emotionally) unless it's a cane day. Argh.

I also have untreatable migraines that come up, oh, 10 to 20 times a month. I've been on all different meds, and have permanent side effects from some of the anti-seizure ones. My concentration and thought-processing skills are not at all what they used to be. I feel like a dumbed-down version of myself sometimes. And I don't know if it's better to suffer through the life-disruption and pain of migraines or feel all out of it on the drugs. *sigh*

Thanks for listening to me rant a bit. I needed a place to do it where I wasn't afraid of being seen as whiny or needy or anything.

Holliday
xox

I went through a period of uncontrolled migraines, and my memory has suffered because of it.. they found out I have a calcified artery in my brain.. not much they can do. until more happen.. I went from 4-5 migraines a week.. to a couple a month.. they think they were cause by being on Effexor.. evil stuff.. took it for a month, took 4 months to get off it.. I use Axert when i get a wicked one.. seems to work pretty fast..and less side effects then Imitrex..Maxalt is pretty amazing too.
I hear ya on the dumbed down thing.. my memory is shot on certain things..others i am fine.. but you ask me two days after a movie what was the name... I wouldn't ge able to tell you.. I don't remember that period of time of the migraines anything that I did.. meh.. probably better though..
I also have a spinal injury, I have my good days n' my bad.. I can't get enough pain control.. Canadian Dr's are terrified of giving out adequate levels.. grr. I am not looking to get high.. but feel normal.. I get cranky and moody if I am in a lot of pain.. I also don't sleep well.. so I tend to nap a lot if it's rough...
Just wanted to put my support out there..and know there are many like you,
peace Jane

[Holliday]

I went through a period of uncontrolled migraines, and my memory has suffered because of it.. they found out I have a calcified artery in my brain.. not much they can do. until more happen.. I went from 4-5 migraines a week.. to a couple a month.. they think they were cause by being on Effexor.. evil stuff.. took it for a month, took 4 months to get off it.. I use Axert when i get a wicked one.. seems to work pretty fast..and less side effects then Imitrex..Maxalt is pretty amazing too.
I hear ya on the dumbed down thing.. my memory is shot on certain things..others i am fine.. but you ask me two days after a movie what was the name... I wouldn't ge able to tell you.. I don't remember that period of time of the migraines anything that I did.. meh.. probably better though..
I also have a spinal injury, I have my good days n' my bad.. I can't get enough pain control.. Canadian Dr's are terrified of giving out adequate levels.. grr. I am not looking to get high.. but feel normal.. I get cranky and moody if I am in a lot of pain.. I also don't sleep well.. so I tend to nap a lot if it's rough...
Just wanted to put my support out there..and know there are many like you,
peace Jane

Mmmm...I've been on Effexor for a year or so, but I've had migraines for a few years longer than that. So I can't blame it on that med. I also take Axert when I get a migraine. It works about 75% of the time, and either dulls the pain, stops it from getting any worse, or makes it go away entirely. Probably depends on whether I am able to take a break and lie down. My biggest pet peeve is that insurance only gives 9 pills a month, so I have to pick and choose when I take them so I don't run out. It's awful and unfair. It makes me want to search it out illegally and hoard them. I'm sure you feel similarly about your pain meds. Yuck. I never really feel like I can make plans or take trips or anything because I can't guarantee anyone (or myself) that I'll be okay. It's been a problem in relationships before.

Holliday
xox

[~LadyJane~]

Mmmm...I've been on Effexor for a year or so, but I've had migraines for a few years longer than that. So I can't blame it on that med. I also take Axert when I get a migraine. It works about 75% of the time, and either dulls the pain, stops it from getting any worse, or makes it go away entirely. Probably depends on whether I am able to take a break and lie down. My biggest pet peeve is that insurance only gives 9 pills a month, so I have to pick and choose when I take them so I don't run out. It's awful and unfair. It makes me want to search it out illegally and hoard them. I'm sure you feel similarly about your pain meds. Yuck. I never really feel like I can make plans or take trips or anything because I can't guarantee anyone (or myself) that I'll be okay. It's been a problem in relationships before.

Holliday
xox

I had them before as well.. but hormone related.. never realized they were migraines.. I get cluster headaches as well..and those are worse.. nothing helps usually.. but I do have a meditation CD that helps at times.. yeah.. I have had probs in relationships too.. because since folks can't see the pain..they think you are crying wolf.. that pisses me off to no end.. grrr

[Woodie69]

Jane,

Don't feel alone when others think you are crying wolf because they can't see the pain. Remember Karma. What comes around goes around. I get treated the same way too. I have no scars that are visable to anyone verifying my head injury. If I wanted to carry around my CAT Scans, EMG's, and MRI's and show them to people, and they could see the damage to my left hemisphere, seizures, then I guess they would understand my pain as well. So, belief is in the pudding as they say. If someone is my real friend, they don't need to see any medical reports, CAT Scans, EMG's, or MRI's. Just remember that.

I have your back.

Andrew

[~LadyJane~]

Jane,

Don't feel alone when others think you are crying wolf because they can't see the pain. Remember Karma. What comes around goes around. I get treated the same way too. I have no scars that are visable to anyone verifying my head injury. If I wanted to carry around my CAT Scans, EMG's, and MRI's and show them to people, and they could see the damage to my left hemisphere, seizures, then I guess they would understand my pain as well. So, belief is in the pudding as they say. If someone is my real friend, they don't need to see any medical reports, CAT Scans, EMG's, or MRI's. Just remember that.

I have your back.

Andrew

Thank Andrew sweetie.that means so much.. sending you , I hope you are having an amazing weekend.. hugs to you, Jane

[Sweetstonefemme]

where has everyone gone off to?????????

[LADY FLAMEZZZ]

Well, UPS brought my info today. Here's the drill thus far:

Sun 12/18 -
Leave Home, Fly to Pittsburgh
Leave Pittsburgh, Fly To Nashville
Check into hotel:

Nashville Hilton
http://www.nashvillehilton.com/index.cfm

Mon 12/19 -
Partnership for Prescription Assistance Holiday Event with Montel
Immediately following that the powers that be have decided I am to shoot a commercial immediately afterwards. Eeeek.

Tue 12/20 -
Leave Nashville, Fly to Charlotte, NC
Leave Charlotte, Fly home

Take dog out, pet cats, shower, collapse.

Please, if you are of a praying nature, please lift me in prayer. I am very nervous about this commercial shoot, I knew nothing about it until about six hours ago.

Best,
ShyFemmeKat

runs in grabs Shy up and gives her femme "squeal" huggs"
so very proud of you !!!
thank you for working so hard for the "cause"..........much love !!

[MiamiButch]

I had them before as well.. but hormone related.. never realized they were migraines.. I get cluster headaches as well..and those are worse.. nothing helps usually.. but I do have a meditation CD that helps at times.. yeah.. I have had probs in relationships too.. because since folks can't see the pain..they think you are crying wolf.. that pisses me off to no end.. grrr

Lady Jane, I agree with you, ppl always think I'm crying wolf, just because I spend a good 95percent of my time in some sort of pain. Everyone is used to me being the strong one, the one who can deal with anything life throws at hym, the one who laughs in the face of pain. Well lately, I've gotten tired of putting up walls around myself and what I am feeling, so now when someone asks me how I'm feeling, I just tell them, when they reply in disbelief, I just say that I've let go of the reins and let my pain go, that it's ok to hurt and that it's ok to say so, just as long as they know that I am not looking or asking for pity. You ask, I tell you, and that is that. If I know that someone is going to be chronically disbelieving in the way I feel, either emotionally, or physically, then I simply avoid answering the question, and sometimes even the person, period. I have been feeling the grumps coming on strong lately, and since my tolerance for idiocy is normally low, at the moment it is nonexistant. I have to take care of myself, and worry about other things that are going on in my life, like the fact that my mother may have heart problems, so I just erase the ppl from my existance for the time being and when things calm down, and I calm down, then I will confront them about their disbelief. Right now, I can't and WON'T be bothered. Although sometimes I swear, I get the irresistable urge to run them over repeatedly with my wheelchair and then tell them I don't believe it hurts! lol

[Ali Mac]

I've had mobility issues since I was born, and I used to have to see a physical therapist once a week when I was a kid for the stuff. I had trouble w/ gross motor & fine motor coordination, and I couldn't do some of the stuff that most people had an easier time doing- like standing on one foot, walking in a straight line, etc. Playing sports helped my balance and coordination and I still play sports with the best of it...I'm strong, I can throw, catch, hit, swim, skate, etc. I'm not the best out there but I do a decent job, so it's hard being good at that stuff and also trying to create awareness that I do have balance problems....because they're not always obvious.

I can't balance on the bus and that's difficult on me. I have as much trouble on MUNI as an 80 year old. Tell society to believe that. They won't.

The thought of Parkinson's disease scares me because my paternal great grandmother had it. I have an aunt who also has MS. I've had a lifelong balance/coordination problem (how I can play the guitar and trumpet as well I don't think anyone will ever understand) and sometimes I wonder where this is going to go for me.

In my mid twenties it PAINS me to write that my gait can be poor and uncoordinated at times. Usually I'm okay, but often I'll easily lose my balance out of nowhere and can trip or start tipping over and it's NOT about being clumsy or klutzy. I can go ice skating, as long as I'm in a constant motion it's mostly ok. But I've felt my right upper leg starting to hurt when I turn it at a certain angle or shift my weight onto it and I'm not sure what that's all about. I've kept silent about a lot of my problems/disabilities because I don't want to be thought of and pitied as the young woman with all those aches and pains and medical problems. They're just things I have to deal with, the disabilities I have, just like the next individual has relationship problems or kid problems to deal with.

Ali Mac

[Holliday]

I've had mobility issues since I was born, and I used to have to see a physical therapist once a week when I was a kid for the stuff. I had trouble w/ gross motor & fine motor coordination, and I couldn't do some of the stuff that most people had an easier time doing- like standing on one foot, walking in a straight line, etc. Playing sports helped my balance and coordination and I still play sports with the best of it...I'm strong, I can throw, catch, hit, swim, skate, etc. I'm not the best out there but I do a decent job, so it's hard being good at that stuff and also trying to create awareness that I do have balance problems....because they're not always obvious.

I can't balance on the bus and that's difficult on me. I have as much trouble on MUNI as an 80 year old. Tell society to believe that. They won't.

The thought of Parkinson's disease scares me because my paternal great grandmother had it. I have an aunt who also has MS. I've had a lifelong balance/coordination problem (how I can play the guitar and trumpet as well I don't think anyone will ever understand) and sometimes I wonder where this is going to go for me.

In my mid twenties it PAINS me to write that my gait can be poor and uncoordinated at times. Usually I'm okay, but often I'll easily lose my balance out of nowhere and can trip or start tipping over and it's NOT about being clumsy or klutzy. I can go ice skating, as long as I'm in a constant motion it's mostly ok. But I've felt my right upper leg starting to hurt when I turn it at a certain angle or shift my weight onto it and I'm not sure what that's all about. I've kept silent about a lot of my problems/disabilities because I don't want to be thought of and pitied as the young woman with all those aches and pains and medical problems. They're just things I have to deal with, the disabilities I have, just like the next individual has relationship problems or kid problems to deal with.

Ali Mac

Hi, Ali Mac.

I understand how the bus situation feels. The beginning of every school semester I start out taking the bus, but it's usually standing room only, and unless I cut in line I'll end up standing. Which I can't do. First off, it feels uncomfortable to stand for the whole ride--the bumps shift my body and I get sharp pain in my leg, plus my balance has been so off since my accident that I honestly don't think I could remain upright!! Physically, no one would look at me and assume I needed a seat, and so I don't feel comfortable asking for one in crowded situations (being fat is an issue here, too). I took my cane on for a bit out of desperation, even if I didn't need it later on, because it was a clear signal of what I needed. But then I felt like kind of a liar. I don't know. I always end up giving up and driving, which I hate. I can't afford it and I like supporting a car-free way of living. Grrr... Does anyone have advice for this situation?

Holliday
xox