Ampyra?

February 9, 2011 Tracy4 Comments

I’m not so much into the Ampyra. Tried it for over 5 mos and sometimes it seemed as if my legs were weaker. Now this does not mean it will not work for all, just not so much for me. I had high expectations, but srsly, it is more for the less severe forms then the progressive forms. Might be only my opinion, but whatever. I know my MS and it knows me.

I really wanted it to help, but oh well whatcha gonna do. Keep waiting for them to finally get a useful medication for the serious progressive forms. I think that finding help for us would really help the less progressive forms.

So I wait, and pray that they find something for PPMS before I get so bad nothing will help.

On that not, off to watch ‘White Girls’ and omg they crack me up. Love the Wayans!!

Anger · Fear · Health · Ramblings · RANDOM

Money, Money, Money…

February 8, 2011February 8, 2011 Tracy8 Comments

They say money can’t buy you love, happiness, etc. I beg to differ, but not in the way most would think.

In my situation money would buy ‘comfort’. Money will not cure me, but it would make my life and my families much easier. You see the stars with MS and other chronic illness’. Montel has his own cook, nutritionist, physical therapist, child-care. Trust me, if I had that it would make life much easier and less stressful. So in this case, money would buy ‘comfort’! Most of he people on these shows with chronic illness depict the success stories. The ones who run the marathons etc. Their MS is the less severe form, and being in remission is a great thing and I am happy for them. But, where are the stories of the those with the severe forms, who have families and live on modest incomes with no extras like a cook, a nutritionist. You get the idea.

There are treatments out there that insurance will not cover, so in those cases money would buy me better health care.

Not sure where this is coming from tonight… maybe because I tried to take a shower in my partly done shower and realized it is not going to make that much of a difference. Roger got the seat and a couple of bars installed, which help. But I have to be careful as it is not all grouted and we have to be sure the water does not get all over the place. The shower itself was fabulous the aftermath, not so much. I am coming to the realization that even bars and a higher chair do not help me get up. My legs are near useless and I sat there and cried, why??? This was not supposed to be my life. Why not strike those who commit heinous crimes and those who do to want to be a giving part of society. WHY? And yes it is my right to ask why. There is no reason for this. I did nothing to deserve this, as many of my friends did nothing to deserve their illness’. So why?

I’m not naive and I know there is no answer for this question.

I sit here, again, wondering if I will be able to get in to my bed tonight. Will I be able to get up easier in the morning? I know these answers will not be ones I want to hear. I hate feeling this way. I am no quitter nor am I a whiner. But as of late I read people complaining about their colds and allergies and runny noses and want to scream at them, “Your piss ant issue will go away, mine wont!! So shut the fuck up and get over it!!” And that is not me either. I hate being this bitter, this angry. I think from all the times I hold it in, it is finally too much to take.

I’m lost and am slipping away from me more and more and I’m scared…

As Always…

Anger · HELL · Multiple Sclerosis · PAIN · Ramblings · RANDOM · Sarcasm

Fuuuuuuuuck

February 8, 2011 Tracy16 Comments

I know, great title for my blog. Haven’t blogged in a bit and here it is, in your face…fuuuuuuuuuck!!

You may ask yourself, ‘Why?’ I’ll tell you why. It’s now after 11pm and I wanted to go to sleep. You know, lie down, get comfy, sleep. NOT! After 4 minutes of trying to lie down I gave up. I cannot seem to get my legs up on the bed. I get one up the other slides off. I pull on my jammie pants leg and my hand cannot hold on or lift my leg. Now I could scream for someone to help me, but they are all asleep and have to get up early for work and school. Hubby is on the pullout sofa as he snores so bad he wakes me up all night. So, I’m sitting here with tears rolling gently down my face as sleep is not coming yet. Even if I get my legs into the bed it take me forever to get into a position comfortable for sleep. Once I lie down I have to pull each leg up in a bent position or my lower back hurts. As it is, if I do not sit in the right spot before I try all of this, I may end up too high or too low on the bed. I am not able to ‘scooch’ into a comfy position. I get one shot. I guess I’m lucky, as once I do finally get comfortable I’m ready for sleep, as doing this easy task takes all of my spoons. Just getting into bed is a fucking chore and it pisses me off. It’s not fucking fair!!!!!! And don’t tell me it could be worse!! It’s going to get worse so shut your mouth. And don’t tell me it could be worse, it could be cancer… this IS my Cancer!!! It has and will continue to take my life from me. Just in a slower mode.

February 8th, marks the 2007 death of my MS partner in crime, Tina Richardson. Her progressive MS killed her. She got caught between a heavy power chair and bathtub and slowly suffocated to death, alone and I’m sure frightened. She could not move and could not scream. So, do not tell me no one dies from MS. They do every fucking day. If she had not had MS she would not have been in that position. I know others that have passed away due to pneumonia from being immobile and the MS basically killed their lungs. Tina was only 40 years old and my friend and I miss her every day. So fuck you and your,’it could be worse!’

As of this moment, it’s only going to get worse for me and I’m petrified. I am in a wheelchair 24/7. I am tired, fatigued 24/7. I run on fumes every day and try to be funny and crack jokes. I hide behind a smile and most days I wish it would all just end. I have pain 24/7, incontinent at 46 years young. Migraines, weight gain, unable to do the simplest tasks. The next time you feel the need to bitch about running errands, doing the dishes… be glad you can run errands and have the strength to do the dishes. I would trade you in a hot second to be able to do all those annoying tiresome chores. The next time you take a shower, thank your God you can. Even taking a shower is a chore for me and after I usually need to sleep as there goes some more spoons.

I try to keep the pain to myself, me feelings, my MS. This is my blog, and you can read or not. Tonight, all the lil things going on in my life, and then the tip of the iceberg, not being able to just get into bed, hit me all at once and hard. Seven months, still no bathroom finished, haven’t even seen them in over 2 months. Promises to here then no show, no call. Losing more leg movement and the list goes on… depression has hit and it has hit me hard. Will I make it through this one… Hell yes! I always do. I’ll find my inner strength and pull my boot straps back up and move on. But, now and then I need to let go, and let the idiots know to watch what they say. God help them if they ever had to deal with a real illness… my comment to them will be, “Hey asshole, it could be worse, you could have MS!!!”

Ramblings · RANDOM · Religion

Setting the record straight!

January 15, 2011January 15, 2011 Tracy3 Comments

I do not expect everyone to leave Etsy for my reasons of principle and morality. I know some who have and commend them on their ideals.

Etsy has changed their terms, which sadly in my eyes did nothing to change my mind. There are still cards up on the site that promote hate and intolerance. There is a card there, in the shop in question, with Jesus on a cross and it states, “What does some dead guy have to do with this holiday anyways? Merry Christmas”. WTF Really, that does not go against the ‘new’ terms!!!

I will not sell there or buy from there any longer. This is just me!

With that said, I know that there are people who rely on Etsy for income and cannot just pack up their shops and leave. I get that and am not trying to demean them or ridicule them for staying. The way the times are, some cannot afford to leave, and I DO get that. So do not demean or ridicule me for leaving. That’s all I’m saying.

For me, ArtFire is less expensive [monthly fee only and no extra % on your sale] and has a better set-up. I will do my best to promote ArtFire for the amazing Artisan site it really is.

Ramblings · RANDOM

Just Say NO!

January 15, 2011 TracyLeave a comment

Ramblings · RANDOM

Etsy Blog comments

January 14, 2011January 14, 2011 Tracy9 Comments

My comments to the Etsy Blog

First comment:

I, for one, am very glad Etsy finally took a stand. For me however, the stand came much too late. That terrible site was left up for much too long. Myself and many friends are already leaving the Etsy site.
For those ‘wondering’ about other unsure items, you must have been out of the loop regarding the site in question. The site clearly harassed certain groups of people, which was already in the terms. Still wondering why it took so long to remove.
My only regret is no longer selling or shopping here. Funny thing is one of the Etsy designers purchased from the shop and thought the demeaning and harassing cards were funny. Go figure!
Good luck to all…

Second Comment after seeing not much had changed:

ROFL!!! The site, with the offensive name, is still there as are a couple of the cards in question. One just had a word added to make it seem ok.
I’m all for freedom of speech, but this was/is straight out cruelty towards a group of people.

Guess it is ok to show a man hanging on a cross and call him ‘some dead guy’. Because that card is still up. And the other cards in questions are still showing in his sold items!

Nothing would have been done if we had not gotten together and received almost 25,000 signatures and Jane Velez Mitchell involved. All the cards would still be there. Etsy is a joke!

———————–

Everything I wrote was true and completely in tune with the blog. Seems they deleted this comment as the truth hurts and sent me a pm:

Hi there,

I recognize that you are upset over a specific shop, and I encourage you to send your concerns to content@etsy.com. The blog comments, however, are not an appropriate forum to talk about this, particularly when they do not relate to the post. I’ve thus deleted your comments and ask that you refrain from continuing to post about the issue. I hope you understand.

Best,
Alison

My comment back:

My comment had everything to do with the post seeing as you removed some but not others of the cards in question. Etsy did not do as they said.

My comments were in truth and in no way slander. This proves Etsy takes what they like and leave the rest!

I sent my concerns to your support with no replies. If a comment is true in nature, you have no right to delete said comment. That is in breech of the first amendment.

————————-

As stated above, Etsy is a joke!

Shop and sell with ArtFire, the only way to go!

Anger · Ramblings · RANDOM

Etsy: Policy Changes

January 14, 2011January 14, 2011 Tracy10 Comments

UPDATE: Etsy is a joke. The site is still there and some cards as well, just a word change here and there. I guess poking fun at religion and showing ‘a dead guy’ on a cross, as the shop owner puts it is also okay in Etsy’s book. Wake up people…

Policy Change: Prohibiting Items and Listings That Disparage or Promote Hate

For me and many others this is a day late and a dollar short. They are making it look like it was a lil mishap and they took care of it straight away. NOT!!! This shop had complaints going for weeks. Nothing was done except a few blanket responses.

It took over 16,000 signatures and a spot on Jane Velez Mitchell’s show for them to even give a shit. One of Etsy’s own designers purchased from the shop and wrote how the cards were hilarious.

To understand my disdain go here: Leaving Etsy.

All their “aren’t we awesome cause we wrote new terms of use blog” did was leave a poor taste in my mouth. If not for the signatures and the Jane Velez Mitchell spot, the cards would still be there. They care nothing for how it made some fellow Etsians feel.

I am proud of the stand I took!! My reply to their blog:
I, for one, am very glad Etsy finally took a stand. For me however, the stand came much too late. That terrible site was left up for much too long. Myself and many friends are already leaving the Etsy site.
For those ‘wondering’ about other unsure items, you must have been out of the loop regarding the site in question. The site clearly harassed certain groups of people, which was already in the terms. Still wondering why it took so long to remove.
My only regrets is no longer selling or shopping here. Funny thing is one of the Etsy designers purchased from the shop and thought the demeaning and harassing cards were funny. Go figure!
Good luck to all…

Anger · Ramblings · RANDOM

Leaving ETSY

January 8, 2011January 8, 2011 Tracy14 Comments

My NEW info on my ETSY page:

Due to ETSY allowing a disgusting person to sell disgusting items, I am moving back to ArtFire.

ETSY feels that cards making fun of children with Downs Syndrome, congratulating people on being raped and being diagnosed with AIDS and Breast Cancer is not against their terms of use. WTF I think they need to pull their heads out of their ass’.

If they or a loved one ‘applied’ to any of these cards or if they had compassion this shop would be gone.

I love funny off kilter jokes and am a bit off myself at times, but this type of freedom of speech is not funny. Here’s funny… I hope those that find this okay and think it’s funny, will need one of these cards one day. Then let’s see how funny they are!
————
For those who I purchase from regularly, I’m sorry, But I will not be purchasing from there either.

I hope others follow suit and leave here as well. It all about principles and morals which it seems etsy does not have.

To see what I am referring to and SIGN the petition [which does not seem to bother etsy] go here:

Petition to Remove re: Etsy shop

This is a letter a friend who complained as well received from the powers at esty. I still have no received anything back from them.

This is Adam Brown, I’m the press manager at Etsy. Thank you for sharing your concerns about this shop. I’m sorry to see that something in our marketplace was upsetting to you. I agree with you that the items are offensive. But, they are not illegal, nor are they breaking any of Etsy’s rules about selling on the site.

Since …it appears that you have already received our standard response, I will skip it. Please feel free to pass along my contact information.

Thank you,
Adam

Adam Brown
Etsy Press
adam@etsy.com
o: 718-855-8874
c: 917-297-5342

Hey Adam, get your head outta your ass dude!!

Etsy’s official policy is to take no responsibility for the products sold on its site. Etsy’s official Terms of Use state that it “has no control over the quality, safety, morality or legality of any aspect of the items listed.” However, in the list of prohibited items, Etsy says that it does not allow items that harass others or that are deemed obscene.

So Adam, Congratulating someone on getting raped is not obscene?? Again you and your company need to get your heads out of your ass!!!!

————————————–

Since my morals seem to be above others, I’m outta etsy. I guarantee they make more off of my shop than this other idiots, and money is what it’s all about right?

I hope to see you at my new shop on ArtFire.

Blessings and Hope!

Family · Hope · Love · RANDOM

Sisters missing a brother they never got to know…

January 1, 2011January 1, 2011 Tracy6 Comments

Can you help, will you help…

This is a link to their story. Sisters seek brother who was adopted in 1971

I know there are times that maybe adoptees do not want to be found. I do not believe this is one of those times. I feel, in my heart, that he would love to know how missed and loved he has been for so long.

This is a New Year, one that I hope will bring a family back together. Siblings are the most important part of a family unit. Let’s help these sisters find this piece of the puzzle that has been missing for so long.