Updates and things...

So what have I been up to?

Not much...

Since February, I've been trying to get a new wheelchair and braces to be more mobile...

Yesterday I got confirmation that my wheelchair is being ordered....braces are still in the process with insurance.  YES....it takes that long to get the things we need if you have Medicare.

I'm still trying to find a job...I wish I could find something...anything to be productive.

I'm still trying to get a car.  I really, REALLY miss driving Uber/Lyft.   

I've got a new apartment after the fiasco at the last apartment.  

They just said they wanted ME gone....no money ordered no nothing...sooo.

NEW APARTMENT....

The Landlord made me buy my own ramp, and wants me to take it in when I'm not using it...but I'm not going to.  Then, the apartment was placed on facebook marketplace for $750 and he's charging us $800 per month.  This is partially because we're getting some help with rent for a couple months.

Why, you ask, do I not immediately file a complaint with Fair Housing?  Because, the landlord also put a clause in our lease that says I cannot file a complaint...which is illegal in itself, but, HEY, I'm trying to make this work.  (If anyone out there wants to help me with this, I'm open to suggestions...I really like this area and don't want to be evicted as soon as I've moved in)

Jacob and I have had our bumps, and a really big one in August that almost was the end of us, but we perservered.  And are still together.  

Oh yeah, I was hit by a car on Sept 19, my sisters birthday.  It was a hit and run, but we were able to find the driver...only to have him not have insurance.  He told the police he had insurance, however, it had lapsed.  My power chair has a bend frame from this and I now need a new one.  

Not only that, but I GOT A TICKET for using the street when a sidewalk was available!!! AVAILABLE DOES NOT MEAN ACCESSIBLE!!!  One end of the sidewalk was good and ADA compliant, however the other end was not, and the officer only looked at the one end.  I feel that this ticket, and the fact that the responding officer did not file a police report and didn't get the three witnesses information, is the reason that Bell County is NOT PROSECUTING the person that hit me, even though he admitted it.  So, I'm stuck trying to replace a power wheelchair. (And then there's the ambulance and emergency room bill.)  The ticket has since been dismissed because they actually looked up ADA laws and determined the sidewalk was inaccessible....YA THINK!!!!

Again....if anyone has suggestions...I'm all ears on this one.  We are thinking of starting a fundraiser for replacing the wheelchair, however, I have not had much luck with these in the past and am hesitant about this.  

We're thinking of trying TikTok to generate some income, with videos about how I do things and of course our crazy life together...we may start that soon.

Anyway...that's my life in the past couple months.  My goal is to start posting on my blog more and actually being present here because I really do miss this.  

Almost Two Years

 So....where have I been for two years?

Living life, letting life live me. 

Learning, losing, hurting, again...Living life.

In these two years, I've yet again lost everything.  (My fault.)

But...

I. HAVE. GAINED. SO. MUCH. MORE.

More wisdom, more patience, more empathy, more friends.  

My ability to walk, such as it was is almost gone.  

We knew this was coming, but it still hurts when there is something that I used to easily do that I can't do anymore.  Or when I forget how it feels to do something, like just walk into a store...without worrying if my chair is going to fit.  

So...what has happened in these two years?

I got an apartment, lived there for an entire year!!! 

It wasn't for me, became homeless again...got another apartment, and because of harassment and a very dangerous living situation provided by the apartment manager, I left everything I owned and became homeless again.  (More on that story in a bit.)

I have had such loss these past two years.  Sometimes, I think it's more than I can handle...but I am surviving.

My dad died on June 4, 2021.  My lovely sister made it to where I couldn't be there when he died. (Gotta love family right?)

Nine days later, on June 13, 2021, my mom died.  Again, my lovely sister made it to where I couldn't be there when she died.  (Man...my family sux sometimes!)

In less than two weeks, I lost my whole world.  And I still haven't recovered from that.  I don't think I ever will.  

I wandered around for a while, homeless again.  This was before the second apartment.  And, started on a journey that is continuing to this day.  

When I got that second apartment, things were good.  Then they fired the office staff and brought someone else in.  That's when things got really bad.  I endeded up getting threatened and harassed so much that I walked away from everything I own for my own safety.  Packed up what I could, and left to live on the streets.

The next day, I spent some time at the library...where I saw this guy sitting there reading on his phone.  The head of the library helped me out by calling one of the accessibility coordinators for the City of Killeen, who immediately came to see me.  Then, she helped me file charges against the maintenance person at my apartments who was threatning me.  Then this wonderful lady helped me get into the homeless shelter in Killeen, Friends in Crisis.  (I can not express enough thanks and gratitude for them.)

I was told to be there at 1:00 PM, and since I had no car, I wheeled over there from the library, which was only a couple of blocks.  There, I knocked on the door and was told I had to wait until 3:00 PM when they let everyone in and then they would do my intake.  To my utter surprise, that very same gentleman came walking up and got in line.  And, he started talking to me...with something along the lines of "weren't you at the library earlier?"   This started the path to something that I had been scared of for the past seven years since I divorced my husband.  

That wonderful man is now my boyfriend.  He now works at Tesla in Austin, and he treats me so wonderfully that I wonder if this is a dream.  

We moved in together.  If you know me, you know that I follow my gut feelings, and my gut said this person, named Jacob, was there for me.  At first, I kept telling him that I didn't want a relationship...after all I had been on my own for SEVEN YEARS!! I was fine on my own.  

But...I wasn't.  I never knew that it could feel this good to be in a relationship.  That this is what happiness is like.  This is a new experience for both of us.  We both arrived at the shelter so broken.  We're both learning how to have a healthy relationship...but we're doing it.  

Twists and Turns

I've neglected my blog for almost three years.

Three years I've wanted to write so much, and when it came down to it, did I really want to share everything with the world.

YES!  

I do want to share with you.  I want to share what's been going on, what I have been feeling, what I've been going through, my ups and downs...I want to start sharing again.  

So, what is my blog about?

It used to be about my life as a wife, a mother, and a farmer. 

I used to advocate about TBI, Hydrocephalus, Rare diseases, and things that affected me in my daily life.

Now, it's going to be about things that affect me in my daily life...however...it's now going to be about van living, fighting for my rights, thoughts, and people I meet.  

And, I will tell you...I will tell everyone...

I live in my van.  I got tired of landlords evicting me for asking for a wheelchair ramp, I got tired of roommates that decide to screw me over, and I'm tired of having to fight for every little thing that other people take for granted...like being able to get into their apartment or house.

It's tough, it's expensive at times, but I have a nice little schedule worked out.  

Most days, you will find me at the Gateway Truck Stop...You meed the most amazing people there.  Truck drivers that come through town once a week, those that don't ever come back again. 

The local firemen that come for breakfast, and sometimes have to leave in a hurry in the middle of their meal.  The older gentleman that I"m really worried about...he's all alone, and I don't think he eats much.  I've paid for his meals a couple of times.  The couple that home schools their son and daughter.  The family that comes in after church every Sunday.  The group of men that must have been friends for a very long time that comes in for coffee every morning.  

Living in my van has made me aware of how little space I have, and that I can get by with very little.  I miss my crafting, I miss my jewelry making,  I miss my sewing...but I don't think I would trade it for anything right now.  

Slowly, I"m coming back to myself.  When everything happened three years ago,  lost myself and it has been a very long road, but I"m making it.  Life will throw you curve balls.  You can expect at least one surprise every day.  And there are still good people out in the world.  

So, with that said....

HI!  I'm Marci, I've been away for a while, but I think I've finally found my voice again.  And, boy do I have a lot to tell you.

Things I've learned in 2018

As 2018 closes, I'm reflecting on what I've learned this year...because it was a year of very hard lessons.

I learned....

...that no matter what happens, there are a few people that will always be there for you.

...trust is very fragile, and once broken it's very hard to fix...often times it's fixed with damage that can't be repaired.

...people change.  

...you can try to break me, but you will fail...and I will come out stronger.

...the kindness of strangers is overpowering.

...everyone deserves a second (and sometimes third and fourth) chance.

...I can live in about 60 square feet comfortably.

...who needs an apartment when you have your van!

...I LOVE my job!!! (and sometimes my bosses!)

...I'm undecided about returning to SFA.

...life isn't fair and that's OK.

...how to sew!!! 

...those that stick around are priceless and those that leave didn't deserve to be in your life in the first place.

...never judge a book by it's cover, and never judge a person by their past.

...the staff at Denny's is awesome!!!

It's been a wild year, and if I had my choice, I would do it exactly the same, with all the mistakes and all the heartache, because I've learned so much from everything that has happened.  I have my goals for 2019 but I"m keeping those to myself because they are my goals and mine alone.  However, I will post a few because it gives me something to work towards. But, that's tomorrow...

Thankful

As I reflect on these past 3 years, or 4 years, or even 5 years....

I realize that...

Again, I"m a lot stronger than I though I could ever be.

People will continue to amaze me, both with the good and the bad.

I have a lot to be Thankful for...

and a lot to be angry about.

I'm not letting my anger rule my life.

I have a few great friends, one fantastic non-husband, and an awesome job that I love most of the time.  

There are still days when I can't believe that my life took such a U-turn, or that I'm alone.  

I always thought I would be married and raising my family...boy was I wrong.

This Thanksgiving, I'm unable to continue my tradition of going to San Antonio because I have to work. However, I may go next week, but it won't be the same.  Or I may not go at all.  

Also, I'm a bit down this week.My KAFO's were giving me little sores, and we all know what that means...I can't wear them until 

1. The sores are cleared up 

2. They're either adjusted or more padding is added to cut down on the sores.

So, this means less standing and walking, and I really don't like being stuck to the wheelchair all the time...I like to get up the little bit that I can. LOL!

And this is one area where I know the risks, and I refuse to disobey doctors orders and wear them anyway, even though I badly want to!

However, I'm still wearing my AFO's to prevent my ankles from flopping everywhere, because that is a funny sight!  

So, all in all, I have a lot to be Thankful for, and I really shouldn't complain, but there are things I miss...

Going into the store real quick!

DANCING!!! (especially Two-Steppin)

Having someone that I can come home to that is happy to see me.

Happy Thanksgiving Everyone!  And I promise to write more often.

I am ANGRY

So, my ex is out of prison...and me being the peacemaker I am, I was talking to him and trying to patch some things up.  

No, I never want to be in a relationship with him, but for the sake of my son, I want to at least be on talking terms with him.

Now, yesterday I had a doctors appointment.  Usually, my doctor says "disc disease" or something to that effect for my back.  Instead, yesterday, he actually said "cord injury".

HIT ME LIKE A TON OF BRICKS...

You see, I think he was avoiding saying it just as much as I was avoiding hearing it.  And last night, I just wanted a shoulder to cry on.

I was texting my ex and said I wanted to be left alone, and he said whatever it was it wasn't his fault. I said, actually it is your fault.

Then he had the audacity to say, "It's not because of me, I don't blame all my problems on you." Then he further said "I never touched you so it was not assault".  

Now, I'm fairly calm about things, but last night I really wanted to kill him.  For him to still deny what he did, and that he didn't do anything, it hurt me more than the assault.  

So, I'm ANGRY because it is because of him that I have trouble walking.  It is because of him that I didn't feel when my foot got burned last year.  It is because of him that I avoid going to stores because it takes me so long to get out of my van.  Yes, it is his fault that I'm in a wheelchair, that I have to wear braces if I want to walk at all, that my back hurts every day.  

So, I will say again, I am a domestic violence survivor.  I survived a very abusive marriage...with a man who is still convinced he did nothing wrong and this is all my fault.  

Guess what?  It's taken me a long time (and I still struggle with this) to admit that it was NOT MY FAULT.  I can not control his actions.  I can only control how I react to the situation.  I live my life in a wheelchair now, and I love my life.  

Yes, it gets very annoying, yes it gets old; especially on days like today when I got totally wet headed in to work.  Or days when my elbows and shoulders hurt.  Or when physical therapy hurts so much that my legs don't want to cooperate...but I do it.  I keep on rolling.  I make jokes about not walking, and having the best seat in the place.  

So, Yes, I'm very ANGRY that he thinks he did nothing wrong...but that's not my problem.  For now, I will go to bed, and sleep in my apartment, with my cat, in my bed.  I've worked hard for the things I have, and they may not be the best, but they're mine.  I love my life and I love my job.  

It has taken getting used to, but I'm surviving.  And as far as my ex, there's a reason you spent almost 2 years in prison.  There's a reason you were convicted of a felony...and not because "it's not my fault."  

Why do you use that? That being my wheelchair...

I've had several people ask me why I use a wheelchair, and I've learned to have a great comeback for that...

I'm an overachiever!

Seriously, though...why do I use a wheelchair, when I can walk...albeit a little bit.  The answer is: 

I'm an overachiever!

or  My body doesn't like me...

So, the first thing is Reflex Sympathetic Dystrophy, otherwise known as Complex Regional Pain Syndrome.  This is the most painful disease known to medicine.  On a daily basis, I live with pain around a 7 out of 10.  For 20 years, I fought this disease.  For 20 years, I lived with the pain, sometimes so bad I would be crying.  It all came down to "how bad do I want to hurt while walking?" and what happened during a football game in Dallas.  The ex and I went to a game, and he didn't want to pay the $50 that I usually pay for parking.  There's a perfectly good parking lot 5 minutes from the stadium...he didn't realize it was the very outer edges of the furthest parking lot of the stadium.  

So, I sucked it up and walked...by then I was using crutches.  During the game he had me going to get the drinks and snacks.  After the game, it was time to go back to the car...by this time I was in so much pain I could barely walk.  So, what should have taken 15 minutes took me over 45 minutes...and it was 9/10 of a mile.  He still couldn't understand why I was in tears by the time I got to the car.  

When I went to my doctor to see if there was stronger pain killers or something, he suggested it was time for a wheelchair.  So, I agreed.  Using the chair helped with the pain....A LOT!! 

But, the ex didn't believe that I needed the wheelchair.  So, on March 17, 2016 we got into an argument about me using the wheelchair.  He was saying I didn't need it, I was saying I didn't want to be around him.  It ended with him assaulting me, and throwing me out of my wheelchair.  When that happened, I had abrasions on my arms and knees, but my back was also hurting...I chalked it up to me overreacting to the assault.

Then...my back pain kept getting worse.  Now, I've been living with back pain for 9 years because (and here's more of the overachiever part) I have Syringomyelia, or a syrinx in my spinal cord.  It hurts, but has always taken a back burner to the RSD.  

Then I went to the doctor, and he noticed my foot spasming and asked me how long that has been happening...I told him since I was assaulted.  He immediately sent me for an MRI.

When I got the results of the MRI, and went to the doctor, I told him I was in tears that morning because of the pain...getting out of bed is always the worst.  He looked at the results of the MRI and shook his head, and said to himself "I don't understand why you're not in excruciating pain."  (Keep in mind I've been dealing with RSD for 20 years, and have a VERY HIGH tolerance to pain.) He then did a couple of reflex tests, which were amusing because there was very very little movement if at all...and shook his head again.  Then, his eyes got wide, and he looked at me and said, "You are in excruciating pain" it's just that you're so used to the pain that you can deal with it a little better.  So, it has been verified...my ex gave me an incomplete SCI when he assaulted me.  This was clearly evidenced last week when I accidently had boiling water splashed on my foot.  I felt the water hit, but no pain.  We got my brace and sock off immediately, and I poured cold water on my foot because I knew...even though I didn't feel any pain, my body was feeling it.  My poor foot immediately went into spasms and my leg started cramping...for the first time since this whole ride began, my calf was actually cramping...before this it's always been my thigh...so yeah I was freaking out a bit.  

The verdict?  A second degree scald on the top of my foot...No, it never hurt, but I've been really careful with it.  

So why do I use that thing?  (Again, it's a wheelchair, and it's OK to ask) 

Again, I joke about it...tell people I'm really lazy, that I argue with stairs, and that walking is overrated.  Take your pick.  I'm an overachiever, even in rare diseases I overachieve....I can't have just one.  Yes, it's ok to ask me anything, and I will answer.  And, no I'm not the best using a wheelchair, but I can balance like you wouldn't believe.  

I don't let it stop me...I participate in Amtgard and go camping...it's hard, and I use my crutches a lot.  I've even gotten brave and walked without my crutches...just as long as I have my braces on.  I've incorporated my braces into my garb...and the people at my park do try to be careful with me when I do decide to participate in the games...though it's rare.  

So, if you see me walking, know that it does hurt me...A LOT...and that I'm fighting through the pain.  I refuse to let my disease identify and limit me, and I TRY REALLY HARD to do everything that I used to do.  

Am I really worth so little?

So, I figure before I’m silenced, I will tell what has happened to me from the apartments.  They want me to drop the Fair Housing complaint, and sign a confidentiality agreement. 

FOR $3,500. 00

Apparently this is all they think I’m worth.  All the things that they’ve done, how many times I’ve asked for the handicap parking spot.  The times I’ve had to call the police.  Even the time I had to get an escort into my own apartment from the police because the manager let other tenants stand behind my car, and wouldn’t let me back out. 

Then I got this email from the lady at Texas Workforce…

The Respondents have made a counter offer:

1.       My clients will waive the amounts due and owing from Ms. Cook as set forth on the ledger;

2.       My clients will pay $2,000.00 to Ms. Cook;

3.       The parties will sign a settlement agreement prepared by the undersigned to include a full release and confidentiality provision, among other things; and

4.       Ms. Cook will withdraw her Fair Housing Complaint (no conciliation agreement)

The offer will be available until the end of the week.

As I stated below, I have discussed my recommendation with management and legal. I want you to be aware that they may not agree with my determination.  If that happens the case will be dismissed no cause. If they agree and the case moves forward it not likely that the damages will be anywhere in the range that you are seeking. If the Respondents make a reasonable offer TWC may move forward without you and settle for public relief. As far as the determination I should have managements’ response by next Tuesday afternoon. Either way I will contact you to let you know.

Then I was sent this email:

I will tell you that the Pre-Determination will be a Mixed Cause finding.  Meaning that we do not have enough evidence to the allegations of Failure to Rent and Harassment.  If you have additional evidence that you believe supports the allegation then please submit it now.  If you have witnesses who witnessed firsthand the harassment allegations, then provide their contact information. I still have not heard from the witness you state wanted to remain anonymous nor have I been provided with their contact information. Your other witnesses have either not responded or their contact information provided was not in service.

Then I got this email:

Respondents have counter offered by raising the amount  on item 1. from $2000.00 to $3500.00. Items 3 and 4 will stay the same.

Respondents state that  the offer is good until Monday, September 26, 2016 and it is their final and best offer.

Either way, they want me to sign away my soul for $3,500, when the dollar amount of things that I lost when they evicted me were over $12,000.  This is a property that is targeting SFA college students.  And, since I’ve moved out, I’ve talked to half a dozen other tenants that have moved out for various reasons, EVERY SINGLE ONE OF THEM  was sent a bill for over $2,000. 

I wish I could afford an attorney to fight them.  I wish I could tell the world what they did.  I wish I could have back some of the stuff they threw away.  Right now, I’m fighting to just survive.  I can’t afford my rent right now because I had to move to a place more expensive and further from school.  I only eat one meal a day on average, and that’s only because I got a 50 block meal plan.  Soon, that will be gone also.   I don’t have internet at home, I’m living on the bare essentials, with a little splurge here and there.  I’m trying to find a job, but no one really wants to hire someone in a wheelchair lately. 

I want to shout that I survived the harassment that the apartments have put me through.  I want to tell Texas Workforce, that this should have been decided months ago.  This fair housing complaint was filed in FEBRUARY!! The law states it should have been settled in 100 days.  We’re going on six months.  My offer to the apartments was $15,000.  That would have gotten me everything that I lost, and a little left to actually try to pay all my bills.  There was a blatant fair housing violation, and they’re getting away with it.  I don’t know what else to do.  

The birth of my Rogue from Ki Mobility

Since I've been trying really hard to raise the funds for the copay for this wheelchair, I figured I would share a little about the birth of it.  

When I went to Texas Mobility to get the whole process started, I had no clue what to do, what to pick or anything.  All I knew was that my doctor ordered a custom wheelchair with the Smart Drive.  Mary from the Tyler store was wonderful.  She got with me and suggested the Rogue from Ki Mobility.  It's a small company, but totally awesome.  When we measured me for my wheelchair, I had no idea what to do or how to order anything.  

So, I (of course) picked purple, and started doing research on the Rogue and Ki Mobility.  I would go several times to the website and look at my future chair and hope I could get it soon.

My gofundme wasn't going very much, even with the rewards I offered, so I made the decision to use my financial aid from school and pay for it, which caused a lot of problems at home.  

(So, please consider donating if you haven't, or even sharing the page to help deflect the costs)

After it was ordered, the waiting began.  I would go around on campus and tell myself...3 weeks...2 weeks...next week...and then 1 day.  I was counting down the days until it would be easier for me to get around.  

So, without further adieu, here are some pictures of the birth of RoadRunner (which is what Becca and I named my wheelchair).  

Here is the chair being cut and welded:

The excitement was building...then I got these pictures:

The color was AWESOME!!

And then I got these pictures:

This is what my chair (mostly) looks like.  And then they fit that sucker into this itty bitty box:

So, this is the birth of my wheelchair.  And then...the first full day using it:

It is so much easier to get around campus, and I'm building a LOT of arm muscles!  I've made my backpack lighter, and got rid of the umbrella (LOL).  Basically...I'm getting used to my chair.  Look for more posts of my wheelchair antics and follow me through this journey or learning how to use it, and enjoying getting around a LOT more!!

Pampered Chef and Lilla Rose Fundraisers!!!

I love going to school.  I don't love the pain that it comes with because of all the walking I have to do.  I've had Reflex Sympathetic Dystrophy for 20 years, and my doctor and I both decided that a wheelchair would best help decrease the pain of so much walking.  Everything has been approved by my insurance, but I still need to come up with my copayment of $1800.  I've started a gofundme page to try to raise money.  And after three days it still has a zero balance.  So, now I've got a Pampered Chef AND a Lilla Rose Fundraiser going on.  Here's the links to everything, and Please pass this around!!

Pampered Chef Fundraiser : http://tinyurl.com/MarcellaPamperedChef

This is the guest special for the month!!

Lilla Rose : http://www.lillarose.biz/parties/8562

January's Flexi of the Month is BEAUTIFUL!!! And the Flexi of the Month always sells out fast!

And here is the link for my gofundme page: http://www.gofundme.com/jb6iww

Any amount would help!! And this will help me with the amount of pain that I live with on a daily basis!  Thanks in advance!

Please help Chairs4Vets

Hi everyone!  This is a real quick one, and of course I'm having problems getting the likes because of certain people...you remember how that went right? LOL Anyway, This is for $100 for Chairs4Vets and will greatly help getting it off the ground.  All you have to do is from facebook, go to this page and like the page, and then go to this post and like the comment by Marcella Cook.  Another thing I'm asking IF YOU WANT TO is to put Chairs4Vets at the bottom, it doesn't matter if you get any likes, but I want to show that we have supporters! Not to mention, there's another person that is (how shall we say this)...getting likes EXTREMELY FAST...you can surmise after that!!!

Please ‘like’ http://www.facebook.com/thepbrealityshow

Then ‘like’ COMMENT BY MARCELLA COOK here     https://www.facebook.com/photo.php?fbid=255295944511364&set=a.211812512193041.56355.132746903432936&type=1 

Thank You

I appreciate all help you can give me with this!  

Would you like to help a non-profit?

Hello everyone!  I have a friend that is trying to get some funds for their non-profit charity and I am asking you guys for your help.  All it takes is a quick "like" on facebook and then for you to write on the wall "I vote for Chairs4Vets". Here's the details:

Please go to : 352MediaGroup on facebook

"like" the page

Then write on the wall : "I vote for Chairs4Vets"

That's it.  This ends on January 31, 2011 so this non-profit really needs a lot of help.

A bit more details: 352MediaGroup is going to give $1000 to the charity with the most votes at the end of the month. 

About Chairs4Vets : In the VA hospitals across the county, the VA hospitals are struggling to provide wheelchairs for daily use in the hospital for the Veterans.  Why are they struggling?  Well, they get the funds, and new wheelchairs.  But, as soon as the wheelchairs are put in use, they disappear.  There are people that need them for appointments (like when they're sick or have just had surgery etc) and some have had to wait up to two hours, or walk to their appointments/clinics.  Chairs4Vets hopes to help the VA hospitals with this problem by providing wheelchairs on a regular basis.  There is always going to be a need for wheelchairs at the VA hospitals, and there are always going to be Veterans that need the wheelchairs on a temporary basis.  So, please help them.

Thanks for all your help!