Can you spare $10 to give someone a reason to be thankful?

Everyone in a country with restaurants has spent $10.00 on a bad meal before. Remember that as you finish reading this post.

I have never asked anyone to reblog a post before.  But I’m asking now. Please reblog, so that other’s may have the chance to give someone a reason to be thankful on this Thanksgiving day.

Geneva Wilkinson lives inside a one-bedroom apartment. Walk through her door, and you’ll find Geneva sitting at her desk as she creates handcrafted greeting cards.

From the waist up, she looks, talks and acts like any average 32-year-old — and she has a dream.

As she explains the truth about her childhood, you’ll find the mental and physical pain she has endured for over 30 years is so well-spoken you’ll want to cry for her losses and missed opportunities.

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I’m in pain every day,” Geneva said. ”Pain has become my normal, but I will not stop until I get some answers.  And I will not give up on my dream!”

I was premature.  At 6 months old I was taken from my biological Mother and Father. My aunt and uncle took me in, the adoption process was final at 2 ½ years old.  I was diagnosed with cerebral palsy around the age of 2 years.  I started therapy shortly thereafter.

There is a difference between being physically disabled and having an intellectual disability. People will often see me in a wheelchair and treat me as if I’m not capable.

I started school at the age of 3 and attended for half days.  In elementary school, Mom put her foot down and said, “No, she isn’t going to school to get a special education diploma!”

In 6^th grade, one teacher said I didn’t belong in a regular school. To the teacher, my wheelchair was an inconvenience.  I was failing that class – not because I wasn’t doing the work:  The teacher didn’t want me there. My mom had to go to a meeting with the teachers and the principal, and that teacher was forced to treat me like a person.  By the end of the year, that same teacher was praising me for doing so well.

I didn’t start to excel until I was in 8^th grade at a new school. The teachers there weren’t trying to get rid of me, they wanted to help.

When I first started high school an aid bullied me endlessly, but the principal put a stop to that.  Four years later despite all of the challenges, and the start of major health problems, I not only graduated on time, but with honors.

With high school finally finished I was going to take the year off to rest before going to college, and also find out why I was having major problems.  I started needing to urinate at least once an hour, sometimes more, about mid-way through my senior year, and couldn’t figure out why. It was 8 whole years, before I could finally get a diagnosis, Interstitial Cystitis (IC)

Little did I know that I would never go to college. 

It’s been 14 years – and counting.  Less than two years after I graduated from high school, my mother was diagnosed with stage four lung and brain cancer, on top of years of COPD (Chronic Obstructive Pulmonary Disease).

Mom was told her gall bladder had to be removed.  She had gall bladder surgery in 2010. After her surgery, she received the cancer diagnoses and started treatment two days before her 68^th birthday.  She went through chemo as well as radiation and was cancer free after that.

“I can’t even begin to tell you how difficult this was for both of us. I had to become her full-time caregiver with little help, our roles had reserved.  Now we were both doing our best to care for each other.  However, on top of that, many family members blamed me for her diagnoses and continuing health problems afterwards.” Geneva says.

A year later, a small lesion was found in her lungs. The doctor didn’t want to do radiation. He thought it was pointless and a waste of time.  He actually wanted to wait until it got bigger, and bothered her!  That is until I put my foot down. By the time he decided on a course of treatment it had been so long he wanted to do another scan.  To our amazement, and to the glory of God it was gone, no treatment needs whatsoever!  She relapsed again the following year. The second time, her radiologist did do the radiation therapy because the spot persisted. She did five days of targeted radiation, and after that she was cancer free!

Even though she had her ups and downs, she never relapsed again, and was cancer free for 7 years. We began to focus on my bladder problem, which was getting worse and worse, and it made caring for Mom very difficult.

By this point I was 21.  I’d been to so many specialists just to be told I had a UTI, but I knew that was wrong.  It got so bad I was about ready to give up, and just resign myself to living with whatever this was forever.  Until the day the pain and urination were so bad that it had me doubled over.

So, I set out to find the answer, and eventually self-diagnosed with the Interstitial Cystitis, now I just had to get a doctor to believe me, and boy was I in for a rough ride. After many failed attempts I finally found a doctor who cared enough to listen to me and do the research.

I asked, “Okay how do we treat it?”

She said she couldn’t treat it. The disease was too complex for her, and she referred me to another doctor. I did some research on this doctor before going and I was totally in shock!

To diagnose it they would shoot chemicals into my bladder.  If you “jumped off the table” that proved you had it!  I never went to that doctor.

So, I started searching for another doctor, and I finally found one doctor 2 ½ hours away.  He was my last hope, and I believe he was truly a Godsend.

We tried every medication that I was able to take, but nothing worked. I was still urinating 20 or more times a day, and in unbearable pain.  Strangely enough my monthly cycle is still the only way I get any relief that doesn’t involve pain medication.

So, we moved on to surgical options; first it was a surgery called Hydrodistension. This is where they go in with a scope and fill your bladder to maximum capacity literally causing more damage with the hope that the bladder will heal itself.  They also injected Botox at the same time to try to help with the pain.  For some people this works wonders — for me it did not. So then one final surgery was planned with my doctor’s colleague.

Before it could happen, things took a turn for the worst.

In early February of 2018 my mom started having an extreme flare up of her COPD. We rushed her to the hospital almost totally unresponsive; she was the sickest I had ever seen her,  including the time when she was going through cancer treatment.

She was admitted into the hospital during the early morning hours of February 4, 2018, and when I left her, I was certain I would be getting a phone call within hours telling me to come back because there wasn’t much time. However; true to her way, and as hard headed as she is (I wonder where I get it from), by 9pm that same night she had made so much improvement.

They were ready to release her two days later, and told her to talk to hospice.  She told them no!  She agreed to do home health, but said she would not do Hospice until she had no other choice. They said she wouldn’t see her birthday just 12 days later much less mine in April, but once again she proved them wrong.

The next 15 months were the hardest of all.

A hospital bed was placed in the living room so it would be easier for her to receive the care she needed.  I slept on the floor next to her bed every night so I could help her with anything, or give her medications when needed.

She began home health, and was making great improvement. I was getting my Mama back! She did so well for about two and a half months, but then hit a point where she was having more bad than good days, so her nurse recommended we start looking into Hospice.

To say my heart sank is an understatement.  We interviewed all of the Hospices in our area, and it took about four months, but we finally settled with the one we thought was best for her.

Little did I know it would be the worst decision we would ever make, and my only regret.

It was a struggle from the start for us to get the things she needed, and to get them to allow us to do things we felt comfortable with or not do things we didn’t.  We finally found a baseline, and things were okay, that is until about three months in.

January 2019, Mom started having trouble breathing.  Due to years of experience, I could tell the difference between infection and a progression of COPD.  I knew she had an infection!  I called hospice at 4 in the morning and asked to have someone come to the house. They said someone was on the way there.

By 6 in the morning, they hadn’t shown up. So, I called again. Finally, they showed up at 7:30 in the morning 3 ½ hours later, of course after I finally got thing back under control.

Prior to this they had agreed that if she needed them, they would give her antibiotics, but when they finally showed up, they refused to do so because she was no longer in major distress.  They said she “sounded fine”.

Boy were they wrong!

By 6 that night it started all over again, so I called Hospice for help, but the same thing happened, and after repeated phone calls until about 9pm they were still nowhere to be found.  Mom’s doctor’s home number was in the phonebook in case any of his patients needed him. I called her doctor to say, “Hospice won’t show up, Mom can’t breathe, I believe she’s got an infection.”

He gave me three things to do and none of them worked. He told me to get her to the hospital, and he would take care of the rest. We got to the hospital, and the Hospice nurse met us there.  A little late don’t you think?

They wanted her to go on a ventilator, but I knew she didn’t want that, after her previous experience of being on one, and almost not coming off it from gall bladder surgery.  So, they put her on a bi-pap machine and started strong antibiotics.  You know what the hospital discovered?  That she had pneumonia and a 100% blocked nasal passage.  I knew I was right.  I knew how to tell the difference, but most importantly I knew my Mama!

She was unresponsive, almost coma like, for about three days, and it was killing me. This was wreaking havoc on my poor bladder, but she had to come first. By day three she was responsive again. More importantly she was sitting up and talking.  We threw our arms around each other, and she whispered in my ear, “I love you.”

My heart melted. I am “her baby” and it killed me not being able to talk to her and get a response.

On about the 5^th day, she started going downhill again.  Mom became unresponsive. She was scratching her skin and I knew it was likely an allergic reaction.  I thought they had given her a medication she was highly allergic to, but it turns out they had turned her oxygen up to five, and it wasn’t supposed to go above three!  Oxygen was poisoning her body.

I called Mom’s doctor and said, “Doc, she’s unresponsive again, and the oxygen is turned up to 5.”  Mom’s doctor said he didn’t order it.  Three days later, mom was responsive again, but the oxygen had damaged her brain!

Once she became responsive, and stable, she was able to come home. However, half the time, she didn’t know she was home.  She even asked my dad, “When did we move here?”  They had lived in the same house for 50 years.

Hitting rock bottom

She lived for another three months after being discharged, but she was never the same again.  She never forgot who I was, but rarely understood that she was home, and kept saying, “I want to go home.”

Many family members kept pushing the idea that she was ready to go heaven which is referred to as home in our family.  Then one day when we had a moment to ourselves, I asked her to be honest, and I asked if home met heaven. She was very adamant, “No, I just want to go home to my house!”

That was a huge relief for me.

The day I prayed would never come for almost 10 years, came just three days after my 29^th birthday.  I lost my Mama, my best friend, my caregiver, my patient (in a way), and my protector. I know she held on until my birthday was over, because just after 1 am on the 22^nd of April, an hour after my birthday was officially over, she started becoming unresponsive. My cat curled up at the foot of her hospital bed, and wouldn’t leave.  I knew what was coming all the while praying that it wouldn’t.  She left this world behind on April 24^th 2019. My last words to her were “Mom I’m here, I promise, and I love you.”  Within seconds after that she was gone, and my entire world literally began to fall apart!

I was told the last thing she said was my name.

Not long after her services were over things got really bad at home, and I don’t just mean grief.  The accusations and mistreatment by my family continued to get worse as time went on. I had no choice but to leave the only home I had ever known, and move into a group home. Ten days later, I moved to an Assisted Living Facility where I have my own small one-bedroom apartment.  Adjusting to a new home while mourning the loss of not just my Mama, but my home, was proving to be nearly impossible. To make matters worse, once I moved into the ALF my two best friends wanted nothing more to do with me.

Surgery, surgery and more surgery

Once I got settled into my new living environment I had another surgery in 2019.  A device that is like a pacemaker was placed sending electrical impulses to the bladder to slow down the contractions and hopefully slow down the pain.  That didn’t work.  My doctor was heartbroken.  He said my bladder had to come out and he wasn’t the one who could do it.

I had an excellent doctor of urology at the Mayo clinic. The surgery was set up in 2020 and then COVID-19 happened. It took a year to get the surgery…another year of unending pain, only slightly relieved when I had my monthly cycle, which is just the opposite of most women.

The hardest part was to get permission to have someone with me.  The surgery occurred on February 10, 2021.

I was in the hospital for 8 days, and felt like I was dying by day four.  The nurse gave me pain meds through an IV and it set me on fire.

I yelled out, “That burns.” 

She scoffed at me.  I asked to have a new IV inserted before she tried it again.  She refused, and tried giving me medication in my other arm!

It is so frustrating to remind people that I have cerebral palsy and I use a wheelchair; I don’t have an intellectual disability!  I do my research and know what I’m talking about.  Something was wrong with the IV’s.

Finally, I got to see my doctor, and he ordered the IV to be changed. He discovered that I had become distended.

I found out the medicine had eroded the IV’s. 

I was so sick, I had to be put on a liquid diet.  All meds were changed to IV.

That wasn’t the end of my misery. When my new nurse came in, she didn’t even introduce herself. When I said hello, and asked what she was doing, she was very rude. She said she had my medications.  I told her I could not take them, because the doctor said no to all foods.

She was insistent that I take them, and again I told her I couldn’t because the doctor said no!  Long story short she stormed out and I reported her.  I got a new nurse that was literally my angel.  She immediately prayed over me, and was determined to help me get better.  I felt so safe with her.

“They were abusing me!”

After eight days in the hospital, I was discharged to rehab.  I was in the first one for three days, and it was absolute torture.

• They wouldn’t allow me to see a doctor,
• I was told I couldn’t call 911 when I had a reaction to medication,
• I found out they hadn’t contacted my doctor and,
• the medications weren’t sent over from the hospital.

Did I mention they wanted to give me a cold bath?  I knew I had to get out, and fast!  I had no choice but to go back to my parent’s house for two days until I could get into another rehab.  When I got into the new rehab, I told them they had two weeks to help me get back to where I was, and I was going home.  On exactly the two-week mark, I was discharged, and after being away for almost a month I got to come home!

Then things came full circle when I started my journey with Home Health; for a while I had the same nurse Mom did.  The nurse was wonderful, but my experience with the company was not the same at all. I tried multiple companies, and sadly had major issues with each.

I don’t live in a “medical home,” one that is set up to provide medical care. My dad comes in twice a week to change the bag that collects my urine.

Yes, a staff could change the bag for me — if I chose to go to another group home.  I don’t want to live in one room again. I don’t want to move to a large group home where there’s no privacy; I can’t protect my computer, desk, and the supplies that are vital to my business.  My goal is to live in an apartment with my cat, and have personal supports to help me with the activities I’m not able to do.

 Still in pain, and MORE Surgery!

With my bladder now removed, my urologist and I were sure that it would end my pain. However, it did not. I am in just as much pain, at times even more. We both suspected endometriosis, many women who have one of the conditions also have the other, and don’t know it until later.

After several horrible trips to a couple of GYNs, one immediately jumped to hysterectomy, and medical menopause, despite my age, and the fact that, Lord willing, I want to have at least one child of my own. After more extensive research, I discovered that a hysterectomy is not the answer because endometriosis can and does very often affect other organs.

I kept researching, and I found something called excision surgery that must be done by an excision specialist. As I read more about this surgery, I started to cry.  It made perfect sense to me! With excision surgery, all surrounding organs are examined, and everything is removed from the root. Doing a surgery like this means that the disease only has about a 10% chance of recurring.

So, I started searching for this type of doctor, and after reading terrible reviews of ones in my state, I finally found one in Atlanta, GA, that had nothing but amazing reviews. He is confident he can help me. He also believes that my bowel and possibly my appendix have been affected as well. He told me that he believes I have stage 3 endometriosis, and there are four stages in total.

The surgery alone cost $8,500 not including travel expenses. 

That is why I need your help, and I am so grateful for this opportunity to share my story.  To my knowledge no excision specialist is in network with any insurance, because of the way the companies want to recognize the surgery. There is a similar, but less effective surgery that only takes about 45 minutes, and only looks at the surface of the female organs, whereas excision looks everywhere so it takes five to eight hours or more, but insurance only wants to pay the doctors for the 45 minutes.

Why did I start a small business to create greeting cards?

After I moved to a group home, I had nothing to do. I’m not the type to spend my free time watching television.  So, I continued to draw which is something I had started doing about a month after Mom passed, because I had to find something to do with my hands.

I would draw a picture of something that related to that day, or something that reminded me of her, and write a little note to her at the top.  Sort of like an art diary.

I was going crazy and kept asking staff what I could do to help.  They couldn’t think of anything I could do at the time so they said, “Plan the group home manager’s birthday party.”

I put everything I had into making the arrangements. Then I thought, “Why don’t I make cards for her from everybody?”

I observed each person who lived in the 12-apartment ALF and created personalized cards from everyone. I used construction paper glued together because that was all I had.  It was a challenge to sneak around and visit everyone’s home so that it would be a surprise.

The day of the party, I realized I’d worked on everyone else’s card but mine!  We’d planned to have cake, and dinner waiting for her.

The secret of her party had been kept so well; the ALF manager had left for the day.  I was frantic! The staff called her with some urgent excuse to come back. (I later found out she had planned to come back anyway.)

The ALF Manager returned, saw all the cards, and was so moved by them she told me, “You need to sell greeting cards!”

I started making cards and selling them to staff and residents at various group homes. Then just a few months before I had my bladder removed, I got the opportunity to apply for a small business grant for people with disabilities, and I won! I had a year to spend the money however I needed to, but due to surgery, and continued pain, I didn’t exactly get to spend the money how I had hoped. I used the remainder of the money on card making supplies. I would love to make many different products in the future such as shirts, clothes, stickers…and more.

 

 

 

I know I can’t cover the cost of surgery on my own, but I will continue to sell my cards to offset some of the cost.  I am including the link to my Facebook Business Page, and also my GoFundMe for everyone below.

• Facebook: https://www.facebook.com/profile.php?id=100064709407729
• GoFundMe:  https://www.gofundme.com/f/help-geneva-on-her-journey-to-being-pain-free?utm_campaign=p_lico+share-sheet&utm_medium=copy_link&utm_source=customer

I want my business to be a success.

• I have Christmas and Hanukkah cards ready for sale…and many others
• I can’t work long hours until I have surgery.
• Unless 900 people give me $10 on my go-fund-me page, I can’t afford the surgery.

As I mentioned earlier, I’m living in an apartment-style ALF. It broke my heart when I had to leave my cat behind.

Someday, I hope to live in my own home with my cat. There’s no reliable public transportation for someone using a wheelchair. I can’t go to craft fairs because they’re all on the weekend and there’s not enough staff to take me.

Mom and I fought the school system so that I could get a regular diploma.  I had to fight the doctor’s until they listened to me. My social life consists of my interactions with caregivers.

I’m 32 years old and it sometimes feels as if my life stopped at 19.  

My life didn’t change or grow while I took care of my mom.  Pain is my constant companion.  I’m not asking for a handout:

• I’m asking if you’ll send $10 to help fund the surgery for someone who has had to put her life on hold and just wants to start living life again.
• For $20.00, I’ll send you a personalized thank you card.
• For $30.00, I’ll send you a free personalized greeting card for any occasion you choose.

One day, maybe I’ll know what it’s like to live pain free for the first time in my adult life.  I’m hoping the surgery will remove the endometriosis so that I can concentrate on expanding my business…and growing as a person.