Category Archives: hope

I don’t wanna die, I just don’t wanna be sick anymore!

As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.

My very own Tysabri bag

My very own arm!

One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.

When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.

I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! :-P I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol

I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]

A new adventure is happening, and as always, I will go in head first! Wish me luck!

Love and Light!


UPDATE “Halfway to Home”!

With over 45 volunteers and friends of Halfway to Home bused in from the Antelope Valley, last night in a Bakersfield night court a decision was made.

Halfway to Home’s permit was not renewed… yet. The court has ruled that on September 22, 2011, Kern County will give Suzanne of list of what they want done at the rescue, concrete work, etc. She will be allowed 50 dogs, where the county only wanted 10. WINNING! And, she has 3 years to get all of this in order! WINNING again!

NOW, the hard work begins… HWTH is run solely on donations and Suzanne’s Social Security. She has the largest number of volunteers for a rescue.

Some of the amazing volunteers!

But, to save this shelter they will need help! To get the concrete work done, in itself, will be a big undertaking which will be costly. Three years may sound like a long time, but in reality it is just a flash in time. They will need donations! This rescue is dear to my heart as two of my furbabies were rescued here. I know times are hard, the economy is bad, but maybe instead of that Starbucks coffee, donate! You get my meaning. :-D

I ask you to please share this information, please help save Halfway to Home and the countless dogs that are rescued every year!

Click the banner below to go the their website and you can donate there.

Click the logo to go to their site!

Your donations ARE tax deductible!

Love and Light!


Please help Lucky!

Click to help Lucky

Lucky is an awesome doggie. I had the pleasure of meeting him personally when we went to the lake. If you are able, please help Erik and Caroline with the high cost of making him all better. Either way Lucky will get what he needs done, but I just want to help them with the costs.

Please click the link above if you can help!

——————————

Lucky’s Journey

I have personally met Lucky. He found his forever home with my nephew Erik Bol and his wife Caroline. They are true dog whisperers and now he is home with them and their 5 other furbabies.

Lucky’s diabetes is under control, but he now needs surgery to restore his sight. They have taken on all his costs up to now and will continue to do so. I wanted to start this page to help get them some donations for his eye surgery. I hope you can help this amazing couple! ~ Tracy – A Dog Named Patrick — Below is their story! ?

Background: Lucky was abandoned on the side of Consumnes River on Hywy 49 between El Dorado and Amador County in January of 2010. My brother William Fallscher discovered Lucky on the river’s edge, he was blind, emaciated, ravaged with open cuts and scrapes, and clinging to life. Lucky was rescued later that night by William and my husband Erik Bol. Erik and I (Caroline Bol) gave him refuge in our home so he could have the best chance at survival. Initially, Lucky laid in our garage on a dog bed for close to 3 weeks, unable to crawl more than three feet as not to soil where he rested. He finally was able to officially stand to do normal things, like go to the bathroom and eat food, it was so exciting. During those first weeks a veterinarian visited our home multiple times, her initial estimation was that he had been on the rivers edge for weeks and that it was especially troubling because he appeared to be diabetic and should have died due to lack of treatment, which is more than likely the reason he went blind. We sought to determine the status of Lucky’s health, the vet said she would see what she could do, because of her love for animals she was determined to help Lucky as best she could. Blood work was ran and it was conclusive that he was in fact a diabetic and needed to be treated ASAP. We began treating him immediately for his diabetes, helping him through his recovery.

Then

When we took Lucky into our home he weighed approximately 30 lbs., currently he is at his ideal weight of about 70 lbs. He has completely integrated into our household, plays with our other dogs, and sleeps on a dog bed right next to my side of the bed on the floor. His diabetes is now completely controlled by my husband and I, but he is still blind. Our mission is to give Lucky a second chance at life, ultimately enabling him to see once again. He is the sweetest dog and my husband and I would not have changed anything, we are so happy to have Lucky in our lives. Every time I see Lucky warm and safe in our home, protected from the elements and any wildlife predators that he certainly had to fight to protect his life, I am overcome with joy. He is the ultimate fighter. Unfortunately though, he will remain blind until we can find him some help getting his eyes fixed. Currently he does not see anything and runs into everything. It would be the greatest thing if he could see again.

Vet information: Bronwyn Szignaroitz, DVM- she is a mobile vet, Phone # 916-673-8890

Now
xx, Tracy…

My Neurologist appt. 5-26-2011

[re-post from fab40]

Well, it’s official, my MS has progressed faster than my neuro would like.

frown

There are no real medications out there yet for primary progressive ms [ppms]. Most of the medications are for relapsing-remitting ms [rrms].

I asked what, if anything, can help me regain any strength or any movement in my legs. Even transferring from my chair to my bed or the tinkletorium is getting quite hard.

I had mentioned a medication last year with some serious side effects, death being one. There have been incidents of patients getting an infection called progressive mutifocal leukoencephalopathy [PML]. They have found that these people may have had PML before starting the medication so that may be the reason why.

The medication is called TYSABRI http://www.TYSABRI.com

It has not been tested on many patients with the more severe form like my ppms. My neuro has patients on it that have ppms and they have regained some to a lot of strength back. It can take 6mos to one year to see any results. It is a 3 hour infusion every four weeks 40 mins from my home.

I have a friend who uses it and he said his life has changed for the better, and he has been on it for over two years.

The referral was called in directly by my neuro so I should find out if I can try it in the next week or so.

I’m scared to death, but not trying something is even scarier. It’s only a matter of time before I lose complete mobility and am bed-ridden, so if this might help me to even be able to go back to using my walker in my home, it will be worth it.

Wish me luck my friends! heartheart

xx, Tracy...


Facebook for Patrick

There are now many FB communities for Patrick, my new one is A Dog Named Patrick. There are three California groups now to fight for Patrick. I hope to see you become a member at any one or all three of them. What information one does not have, another may.

On our show yesterday, The Padded Room, my bff Ruby and I talked about Patrick. It got a bit emotional at times, but it is hard to keep control and emotions in tact when discussing such horrific abuse of a living creature. You can listen to the 30 minute archive by clicking on our The Padded Room link.

There is also a new petition to get signed, Justice for Patrick Petition please take a minute to sign!

Remember, it is about Patrick and all the others abused at the hands of monsters!!

Safe and sound, as it should be...

xx, Tracy...


My Crippled Access bathroom…

happy roll...

My bathroom is now useable and the tile is all done and my shower is ready for my crippled ass!! We still have to paint, and replace the toilet. [adding a toilevator for extra height] Just basic finishing touches. I am getting frames for around the toilet and shower chair for extra security and to make it easier for me to get up off the seats. The commode is going buh-bye!! Maybe we will have a ceremonial bonfire! Until the seat frames [rails] come I still need help showering. Luckily Roger ‘likes’ this chore! lol The perv! :-P

Now that we have this out of the way, it is time to move on to the next chapter of fixing up my home 101. lol It’s de-clutter time and make my home more cripple friendly. Mainly, I want to get rid of the junk, and make my home my castle. ;-) We are going to paint the interior, exterior, hopefully tile the rest of the main walkways and into the TV room, weatherstrip doors, fix dents in walls [no idea how those got there!] It’s not all going to happen overnight, but it will happen. Sadly, patience is not a virtue I have, but I am learning…

xx, Tracy...

 


Ampyra?

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.

just say no

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!!

xx, Tracy...


Sisters missing a brother they never got to know…

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.

 

xx, Tracy...

 

 


The Crown Fire Blazes on

We were allowed back in our home today. Then the next group of homes were evacuated as the fire moves on down the road. Because the brush is low and we have high winds out here the fire is burning quickly. The main concern is protecting the homes in the area. We have had helicopters, various planes, and a DC10 flying overhead since yesterday dropping water and phoschek on the flames.

Status check:
Crown IC (Agua Dulce):
Fire was reported at Thursday July 29, at 2:32pm and it is now at 13,000 acres. Currently we are at 20% containment.

Resources to this fire are the following: 1700 plus Fire Personnel, 6 Copters, 4 Fixed Wing and 1 DC10, 2 Helitankers, 10 Dozers, 3 Water Tenders.

This was how it looked when we got home this morning:

The Day After

The Day After

The Day After ashes fall

I am so thankful that our family is safe, our home is safe and very glad to be back home. Blessings to all going through this ordeal.

I also want to say we have the best firemen/women in the World. They rock!! I thank you from the bottom of my heart for all you do when risking your lives to protect ours. Ya’ll ROCK!!

Blessings and Hope!

—————————

UPDATES:

Evacuation Information
Friday July 30th, 2010: 5:18 a.m. PDT

Palmdale Station is advising the following fire evacuations:

Soledad Canyon
KOA Campground 7601 Soledad Canyon Rd
Robins Nest campground 8237 Soledad canyon Rd
Shambala Wildlife Reserve 6867 Soledad canyon Rd

Leona Valley / West Palmdale
The Ana Verde Community
South of Elizabeth Lake Rd from 90th Street West to 25th Street West.

Evacuation Shelters have been setup at the following locations:

Marie Kerr Park – 2730 West Rancho Vista Blvd, Palmdale
Acton Community Center at 3748 West Nichols Ave, Acton
Agua Dulce Elementary School at 11311 West Frescati St

Residents needing shelter for large animals are asked to go to the Antelope Valley Fair Grounds at 2551 W Avenue H, Lancaster

Road Closures
Friday July 30th, 2010: 12:08 p.m. PDT
Based on ongoing evaluation of the fire and dangerous conditions, Incident Command is ordering a hard road closure in the area of Elizabeth Lake Road from 25th Street West to Bouquet Canyon Rd. Access to Elizabeth Lake Road via Goddie Hill and Bouquet Canyon Rd is also closed.
Access into the area will be restricted to all, including residents. Those residents who have chosen to stay are encouraged to leave.

Access is limited to residents only in the following areas:
Anaverde Community, Rancho Vista, and Shannon Valley.


Toe gripping…I think

Normally my left foot does a toe curl thing that I cannot control. It’s quite sexy! :-P When it happens Roger will try and straighten out my foot. Bottom line, I cannot control the toes on my left foot or the foot for that matter. My right foot has more movement, but I cannot grip them on my own. I guess they call it toe clawing.

NOT my foot!

Well today Roger helped me shower in the kids bathroom again. When I finally got out he went to get me some jammies. Me being me and not waiting for him, got up and tried to get to the sink to rinse with my fav, Listerine. I started tipping over going down and all of a sudden my toes, on both feet, gripped the ground and balanced me!!! I am not sure if Ampyra also works with the feet, but for me this is a first. I was so excited and thinking it was a fluke, I made myself tip again and again gripped and balanced. So, here I sit gripping and un-gripping my toes all by myself.

Could be a start? I don’t know, but I’m taking it!

Blessings and Hope!


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