Friday, January 6, 2017

Speaking Up For Myself

Most of the time, I put my head down, doing all the things I'm supposed to do.  I pray every day, asking for peace and health in my life.  I try to love, do good deeds, and spread a positive attitude to others every single day.  One of the things I take the most pride in is how I love and care for my children.  I'm not perfect, but I try HARD to do a good job.

Since I, as a mother, was recently brought up in fundraiser (not mine) involving my son, I would like to address a couple things.  This is not to disparage anyone, but instead to shed light on the situation.  I believe that, in the description of this fundraiser for a very large bathroom (with double sinks, jacuzzi tub, and 25sqft water closet), there was some misinformation that may lead people to donate for the wrong reasons.

No doubt my son is special needs, and no doubt he has lot of needs.  He is nine years old, has severe Cerebral Palsy, and cannot do anything for himself.  Life for anyone caring for him is not easy.  I appreciate that so many people are involved in caring for him daily, including Eliah's dad and his wife.  My ex and I have joint custody, so that means that we alternate weekly, giving me a cumulative six months of the year with my children.  In the fundraiser description, there were many people specifically addressed in providing care for my son.  I was not one that was listed, which makes it a misleading statement.  It also felt like this was an intentional omission, which was insulting.

"He has a slew of helpers- us, his grandparents, his sister, an aide at home and school, a nurse at school and on the bus, his teacher, and speech, physical, and occupational therapists who helps him with all his basic necessities." 

Another area that I was addressed is in regard to monies provided by Medicaid for a Handicapped  modification.  There is a one time payment from Medicaid available for my son, to be used for a vehicle conversion or home modification (not necessarily just for a bathroom).  We are divorced, and have two homes and two handicapped vehicles, but Medicaid will not split that money or provide the option for both parties.  At my ex's suggestion, we added in the court order that we split that one time payment if one of us made a modification.  All things being fair, we can each have money towards a modification (home or vehicle).  The statement made in the fundraiser felt like it was implying that I was taking something away from my son out of greed.

"Eliah is on a waiver plan through Medicaid that will allow him a one-time home modification.  They will pay up to $7500, however, we have to split this amount with his mother per a court agreement (who already has a handicapped shower in her home) which only allows us to have $3250. "

And in all honesty, I would be glad to donate my half of this benefit towards a need for my son under certain circumstances. Ultimately, I want my son to have what he needs.

The above statement also says that I have a handicapped shower in my home.  This is only partially true.  I intentionally bought a handicapped accessible home in anticipation of future needs and that was a top priority for me.  My ex and his wife had that option as well, as there was a handicapped home for sale on their same street at the time they were looking to buy  (I even sent them information on it).  They made a different choice.  That's their prerogative.

In regard to the actual shower I have, it is accessible, but that does not mean it is a handicapped shower.  It does not have a $7,000 bathing trolley.  It has a $480 shower chair for special needs that can fit in ANY regular sized bathtub or shower.  (see picture)  If Eliah wants to lay flat to bathe, a small inflatable pool will only cost $15-20.  Put a pad underneath, and he is set!

Finally, it occurs to me.....I can only imagine how much more I could do for Eliah if there wasn't a constant stream of money going to attorney fees to defend myself in regard to custody and child support.  I paid over $12,000 last year in attorney fees, and still have at least two more years of the same amount.  I would have loved to have taken the kids on vacation, paid off my medical bills, renovated my home, or started to save for retirement.  Well, for that amount, I could have done all of that.

The point of all of this is, we ALL want what's best for Eliah.  And we all want life to be a little easier caring for a special needs child. I appreciate that people care and want to share their good fortune to help him.  But please don't be mislead into thinking that I "have it made" and don't do anything to help my children.  I don't have it easy.  I don't have a two person income home. I don't have a slew of helpers. I am a single mom, still dealing with cancer, with a full time job, no family in the state, and debt up to my eyeballs.

If you want to give money for a $30,000 bathroom, feel free, just have some of the facts before you do.  My personal opinion is that Eliah's needs can be met differently and for less. But in the end, I appreciate that people care about my son enough to help.

Note:  Please do not speak poorly of my ex or his family in comments. This post was just to make sure that the information provided to people regarding comments in the fundraiser was correct.


Thursday, October 20, 2016

Susan G Komen #MORETHANPINK Campaign

Susan G Komen Foundation has asked me to do a video for breast cancer awareness. I need you to share it anywhere you can! It's real, it's personal to me, and it's a little twangy with my accent.  So exciting! 

Susan G Komen wants to know who your hero is.  Share your story and hero with the hashtag #morethanpink  

Thursday, September 1, 2016

The Unspoken Side Effect- Weight Gain After Chemotherapy

Every six months, I visit the Oncologist to go over bloodwork and make sure cancer has not made a reappearance.  And I'm coming up on being a 3 Year Cancer Survivor within the week.  Yay! I'm excited to be healthy, have great bloodwork, and to get another year under my belt.  But...

There has been a notable downside of going through chemotherapy.  Most cancer survivors I read about have the big issue of fatigue for years following treatment.  And I can definitely see that as a problem, but my issue is something different.  For the past year and a half, I've steadily gained weight.  Not a lot at a time, but a pound here and a pound there.  About 10 pounds up, I asked the Oncologist about it.  His response was that it wasn't a big deal, and I had it in all the right places.  Obviously, that did not put my mind to ease, because I could see the difference in the mirror and the way my clothes fit.

Although I didn't have a "workout" routine since starting full-time work a year ago, I did get exercise throughout the day.  In one year's time, I had given 550 tours of the assisted living community, not to mention all the times I walked the building in anticipation of those tours.  I was getting a good 10,000 steps in daily (in high heels!)  In addition, I ate well.  I never drank sodas, I didn't overeat, and I focused on healthy choices (with dessert sometimes).  Yet, the weight continued to creep up.  And to top it off, I noticed that my body composition had changed.  Cellulite? Sagging skin? Low muscle tone?

It's not that I think I
 look bad, but more about
how my old clothes fit me
By the beginning of August this year, I had gained 22 pounds from the date of cancer diagnosis 35 months prior.  And I had no real reason for the gain, as I refused to believe that it's my age to blame, so I started to research (as you know I love to do). Turns out, weight gain after chemotherapy is a thing.  Apparently it's quite common for women to gain weight 1-2 years after cancer treatment, and it's not due to overeating (see study here).  No wonder my Oncologist was so dismissive about the whole thing.

In addition, it's also common that body composition changes after chemotherapy.  Loss of muscle, loss of bone mass, and an irregularity of insulin, causing insulin resistance, are all expected changes.  Why aren't we told these things up front?  Regardless, what's done is done, and I'm on a mission to fix the issues.

There isn't a whole lot of research on HOW chemotherapy changes someone metabolically, but I can tell from my own body that, despite food intake and physical activity, I will have to do more than just "diet" to make a difference. Knowing that the body's insulin is affected by chemotherapy, I'm also guessing that how the body processes Triglycerides and fat retention is also affected.  I really wish there was more research on these effects.

Anyway, around the middle of August, I started a new regime for getting my weight and skin under control. First, I joined Sparkpeople to track my calories during the day, trying to keep around 1200 a day, with one cheat day a week (so my body doesn't think I'm starving).  Daily, I use organic plant protein meal, organic superfoods, and collagen peptides full of amino acids that spark HGH (human growth hormone) in my morning coffee...along with my supplement regime to include Silica now.

Then I use two things about an hour before lunch and dinner; one is Garcinia Cambogia and the other is Glucomannan.  First, the Garcinia Cambogia keeps your insulin low while you eat, preventing your body from retaining fat.  And second, the Glucomannan is a soluble fiber that has digestive enzymes, probiotics, and helps fill your stomach so you don't eat as much.

Then, when I do eat lunch and dinner, I take CLA and L-Luceine.  The CLA aides in fat loss and L-Luceine helps your body retain muscle mass while losing weight.  I have a tendency to forget the ones before meals, but usually remember to take these two fairly religiously.  I also try to get back to reducing carbs, eating more veggies, and taking a break from dessert, although I do have dark chocolate occasionally, so I don't feel deprived. It really just depends on what my calorie count is for the day.

Now, I realize that this regime seems somewhat intense with regard to pills, but apparently that's what I needed to jump start weight loss now that I know I'm fighting a cancer treatment battle.  And this may not be sustainable in the long run.  But the goal is to get the weight off, build the muscle, and maintain a healthy lifestyle....all without being miserable from not eating the things I enjoy.

So now, 19 days in to my new treatment for metabolic homeostasis, I'm 9 pounds down, and there is a very noticeable difference in my skin.  That's 3.32 pounds lost a week, and my skin is starting to look tighter on my face and thighs, and even my hair and nails are looking better.  I'm hoping to continue this routine for another 20 pounds, and I'll be setting myself up for better success in beating cancer long we all know that obesity is linked to higher cancer rates.

We'll see how it all goes, and I'll keep you updated on the progress!

UPDATE 9/5/16: I'm down 12 lbs!!

To read more about weight gain after chemotherapy, just type this into your google search box...
weight gain after chemotherapy treatment pubmed

Saturday, August 6, 2016

Susan G Komen Survivor Spotlight

Cancer was just one battle this stay at home mom had to fight

By Katrina Daniel
2013 and 2014 was a bad time for Ann Peart. And that’s an understatement.

She was divorced, no longer able to care for her two children, she had no job because she’d been a stay-at-home mom of her medically-fragile child for 10 years, she had no health insurance. And she was diagnosed with an advanced and aggressive form of breast cancer.

“It’s been…challenging,” Ann says now.

She was 39 in August 2013 when she felt a sharp pain in her armpit. That “led me to do a self- exam. I found a hard lump in my armpit and another in my breast, so naturally I panicked,” Ann recalls.

Her cancer spread quickly, going from one lump in her armpit to four, and six in her breast in about two weeks.

Her panic didn’t last long, however, as her natural resilience, curiosity and drive kicked into high gear.

“Not having insurance, or even a family doctor, I started to look online for options. South Carolina has free mammograms but only for women over 45, I was only 39 so I didn’t qualify,” she says. “I finally found the Susan G. Komen Foundation and called my local chapter (the SC Mountains to Midlands affiliate). Within a week I was at the Breast Health Clinic, and by that time had two more lumps in my breast that seemed to show up overnight. I felt that having the local Komen Chapter and being able to talk with someone was the most helpful.”

“I was scared, looking for answers and guidance, and they were able to produce results. A phone call to my local chapter was all it took. However, with it being so late in the year, the grant funds for my local hospital were already gone. But I persisted, knowing that I couldn’t travel out of state due to my kids. Luckily the local chapter gave me someone to talk with at the Breast Health Clinic who could help me. They took pity on me, heard the desperation in my voice and I was able to be seen with an emergency stash of Komen grant funds.”
Shortly thereafter, Ann underwent seven rounds of chemotherapy and five surgeries, including reconstruction.

At the same time, she was dealing with an acrimonious divorce and she had to give her husband temporary custody of their two children – a 10- year-old daughter and 8-year-old son –while she was undergoing chemotherapy and surgery.

“I have the best of situations, and I have the worst of situations,” Peart says. Her daughter has tested in the top intellectual tier of children in the country and goes to the School for the Talented and Gifted. Her younger son, however, is severely disabled and will never talk, walk, or graduate developmentally beyond the level of a 2- year old.

After she underwent several surgeries, she says she put her pride aside and asked for help.

“I applied for Medicaid for insurance, a hospital sponsorship to pay for surgeries and treatments, food stamps, and the program that pays your mortgage while you have temporary hardships. I also had friends and family hold a fundraiser to help me get through all those months of treatment. I managed on $800.00 a month for two years.”

“One thing I’ve learned through experience is that nobody is the same when it comes to cancer. When you have cancer you get bombarded with advice, cancer stories, book suggestions, diet suggestions, alternative cures, and the list goes on. My best advice is to think for yourself. Figure out what works for you and you alone. This is a journey towards health, and it will take time and different strategies to get there.”

After she was forced to go to court to get her children back, Peart also needed to get a job.

“I remember standing at the Social Services office, waiting to get food stamps, with hair an inch long and scars still fresh on my body from breast surgery. I was going through the work training program with recent criminals by my side, and thinking to myself ‘How did I end up like this?’”

“And now, after clawing my way back up, I’m the sales director at a health care facility. I am able to provide for myself and my children. I’m able to leave the strife in the past and pay it forward to others. I don’t take any of it for granted.”