Happy On Wheels – Page 55

10.27.2017 by Happy On Wheels //

You Can’t Control the Weather

The planning started over a year ago. And, unlike a wedding or other event where there can be an alternative location, this event has to be outside. I’m referring to the annual Making Strides Against Breast Cancer walk. Over 5000 people are expected to walk to support breast cancer awareness. While the cause exists regardless of the weather, everyone planning and participating is hopeful that the day will be sunny, warm and even though nobody says it out loud, perfect. Weather options

Certainly, we all secretly know that perfect is not usually attainable. However, the last three weeks have been absolutely beautiful and there has not been much rain. In fact, hardly any rain at all. So, when the weather forecasters began predicting rain on the day of the walk, it was easy to ignore given that the day was beautiful outside. But as each day has passed this week, the forecasters have revved up predictions, started everybody spinning, and now say that a Nor’easter will be blowing through all day Sunday.

My first instinct was to be angry. How could every day be so beautiful and the one day when you want it to be perfect have a Nor’easter? Not just a drizzle but a major storm? Not fair. But then I started reflecting. Is it worth the stress? Can I control the weather? Do I know 100% that the forecasters are right?

Well, the forecasters are still saying 100% rain. So it is unlikely that we will be spared. It is also likely that the wind will be blowing like mad and the rain coming down in force. And it doesn’t help that people around me keep asking about Sunday and if the walk will still go on. With all of this noise around me it is hard not to get mad and stressed out.

But I made a decision to be there. And I’m sticking to it. I can’t control the weather. And what good is it to be angry? Yes, it is unfair, but who knew one year ago that October 29, 2017, would be a day of terrible weather. And if it is, it doesn’t negate the importance of the cause and the awareness that we have created over the past year. It does not take away the money that has been raised and the importance of continuing our fight against breast cancer after October and each month and year afterwards.

I may be alone with my windbreaker and hat on October 29. And to confess, I’m sure there will be a bit of anger in my heart about the weather. I can certainly dream of a beautiful day with sunshine and unlimited numbers of people eagerly awaiting the start of the walk. But I will be content with whatever occurs. I will do my best. Because that is what fighters do. Those that fight breast cancer have bad days Breast- cancer ribbon and good days. And they can’t give up on the bad days. Some of their days are like a Nor’easter where the pain and the treatment are unbearable. And other days are better, with rays of sunshine and beauty and happiness. Living with breast cancer is not a controllable event. It doesn’t come and go and change by the hour.

So whatever the weather, I will smile and be thankful. I am a 7- year breast cancer survivor. I am tough and I am a fighter. And I am not going to worry about the weather. In the end, it is my health that matters.

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10.23.2017 by Happy On Wheels //

It’s Not Easy, But You Must Get Your Mammogram

October is Breast Cancer Awareness Month and I am celebrating the fact that I am a seven-year survivor.

The Undaunted Determination Team at the Making Strides Breast Cancer walk

As a quadriplegic for 34 years, my diagnosis in 2010 was the last thing I expected. I had dealt with a multitude of health issues, but cancer wasn’t even on my radar. And without the ability to do my own breast exams and the inconvenience of mammography and pap smears, I did not have breast health anywhere near the top of my list.

After returning home from Shepherd Rehabilitation Center still recovering from serious complications that developed after having wound surgery, I was incredibly weak and marginally healthy. One morning as I was getting dressed, my aide felt a lump in my breast. I didn’t do daily or even weekly breast examinations and my OB/GYN had never done one — in retrospect, that is not acceptable! I realized it was time for a mammogram, so I scheduled it and I went.

When you have an SCI, getting a mammogram is like being a contortionist. Trying to get your breast into the machine and maneuver with your armrests and wheelchair is next to impossible. That, plus the complete discomfort of trying to lean forward in the right position makes getting a mammogram one of the most difficult exams for us.

After completion, I heard the technician whispering I needed to get a diagnostic mammogram. I did not know what that meant, but I had to do the tests all over again. I wasn’t worried until they told me that they wanted to do a biopsy and there was an opening available that day. There is no history of breast cancer in my family, so I had hopes it was just a blip in the result.
My Scans Have Been Clean

On July 7, 2010, I got a call from my OB/GYN telling me I had breast cancer. He gave me the names of doctors to call. I was in a state of shock and could not easily process what he was saying. The medical system is usually slow, but when you have breast cancer, it moves at rocket speed. I saw an oncologist and a surgeon, and reviewed all of the options. Because I cannot feel heat, radiation was not an option for me. Luckily we had discovered the cancer early. It was Stage I and not an aggressive form of cancer so I did not require chemotherapy. That was a blessing because at the time I was too weak to endure it.

Given the options, I decided to have a right mastectomy. I was not a candidate for reconstruction because I have no muscle, so I wear a prosthetic bra. I did not take any medication after the surgery because the side effects impact bone density and as a woman with SCI I have a high risk of bone fracture and I did not want to make it worse. For the first and second year I had to do a mammogram every six months and now it is once a year. My scans have been clean.

Saying “I have cancer” is a phrase I never imagined coming out of my mouth. Even though talking about medical issues is commonplace when you are a quadriplegic, having breast cancer seemed like the most unlikely health problem I would have. It just goes to show you that anyone can get cancer. It does not discriminate.

Accesible mammogram machine — When Spectrum Health offered mammogram screenings for associates of the Ms. Wheelchair pageant in Grand Rapids, Michigan, last year, 2012 Ms. Wheelchair Mary Zendajas took advantage of the opportunity. (Taylor Ballek/Spectrum Health Beat)

My experience opened my eyes to the lack of accessibility in breast cancer prevention and the lack of knowledge on behalf of women with disabilities as to what is needed for maintaining breast health. It also highlighted the lack of knowledge in the medical profession regarding testing and treating people with SCI for breast cancer.

Medical imaging is improving and treatments for breast cancer have become more customized. Genetic testing is available. With more information, those that are diagnosed have greater options and increased chances that early intervention will improve outcomes. This is all good news.

But it is not enough. Women of all ages are dying of breast cancer. Diagnosis is occurring earlier, but some forms of cancer are aggressive and treatments are debilitating. The underlying causes of many types of breast cancer remain a mystery and funding is not nearly enough to find a cure. There is much more to do.

And, there is more that we can accomplish individually and collectively as a disability community. Raising awareness of this deadly disease is important, but something as simple as doing a daily breast exam can help prevent diagnosis at a later stage when treatment is more difficult. If you cannot do it yourself, find someone who will. Early intervention is critical for quality of life and is proven to result in more successful outcomes. There are still medical professionals that do not routinely do a breast exam during a physical. You must demand the highest level of care from your provider.

Most importantly, there is technology available for fully accessible mammography that makes the process simpler and less arduous. But it is not being purchased by radiology centers and hospitals. Health care entities have large medical device contracts with well-known companies and continue to purchase new mammography machines under contracts with those same brand names. We must advocate for this accessible technology to be made available in our local centers. Additionally, many vans that drive to communities to give free mammograms do not have lifts. This is not acceptable!

There is huge potential to make positive change for those with disabilities that have recently or may be diagnosed with breast cancer. Here are some tips:

• Ask questions

• Know your family history

• Understand there are free resources available from organizations like the American Cancer Society.

When you make your mammogram appointment, ask for an extended session and additional personnel to be present. Don’t wait until you get there. And, policymakers must hear from “real people with disabilities” that access is primary and cutting costs for research ultimately results in unemployment, poverty and an increase in other chronic health care conditions that cost more money for individuals, providers, and insurers. This downward spiral for anyone who is diagnosed and treated with breast cancer can be avoided.

We have the power, as a community, to move the dial forward in the fight against breast cancer. Join me on this journey. It will empower you and those around you. Start today by getting your mammogram. And if you do not experience doctors and health personnel that treat you equally, advocate. The status quo is not enough.

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09.22.2017 by Happy On Wheels //

No Pain, No Gain

I had minor foot surgery at the b1eginning of the month to correct a problem that was not considered “serious” and not required, but it was highly recommended because it corrected a problem that would have only gotten worse over time. The second toe on my right foot was completely bent over. This condition, hammer-toe, was particularly bothersome when I stood up as my toe was perpendicular to the floor. As a person who uses a wheelchair because of Friedreich’s Ataxia, I was safe and comfortable during the day in my wheelchair wearing shoes and socks. However, standing up, particularly in the shower when your toe is perpendicular to the floor, hurt when I put pressure on it. Upon standing, sometimes my leg would move involuntarily and required a rapid adjustment of my feet to try to regain balance. Therein lies the issue for me: as someone who relies on grab-bars and the like to stand, I can’t afford to have any involuntary, rapid adjustment of my feet. I often feel like a tightrope walker.

The actual surgery itself wasn’t bad, nor was it especially long. I had an IV with some type of anesthetic, and I remember my bed being wheeled into the operating room and seeing a few people getting various machines set up for the surgery. I woke up in the recovery room about half an hour later and they told me that the surgery had only taken about half an hour and that I had been asleep about half an hour after that. I had crackers, water, took a pain pill, and received my post-op instructions. They wrapped my foot and leg up to the ankle and, with a dressing on the toe, put a “boot” on my foot. This became my “shoe” for the next couple of weeks. The nurses assisted me in getting dressed (sweatpants are the easiest thing to pull over the boot I quickly learned) and helped me transfer back into my wheelchair.

Not to be a whiner, but the first few days were not great. I was in pain and groggy from the medicine. I spent most of my time in a chair with my foot up on the Ottoman and a pillow. I needed to keep ice on and off of it every 30 minutes and luckily my mother and others were around intermittently and willing to help me. It is hard enough to care for yourself and maneuver when you have a disability, but because I was a bit out of it from the pain medicine and transferring was difficult because of the boot, I accepted the help. I surrounded myself with a book, the remote control for the television, snacks and other necessities.

I didn’t try to take a shower for a few days and was able to maneuver, albeit much more slowly, in and out of the chair and in and out of bed. I did not go out of the house unless I absolutely had to (such as back to the doctor) and limited my movement. My balance was off because of the boot and it was not easy or practical to stand up. When I finally did take a shower, I had to put a plastic cover over my foot Cast cover for shower and lower leg. It made the shower floor like an ice-skating rink. I’d be lying if I didn’t admit that I slid to the floor on a couple of occasions and had a very hard time getting back into my wheelchair. But I managed and despite some cursing, aggravation and getting to bed really late, I made it through.

After two weeks and one day, I finally got the stitches out. I have been cleared to take a shower and wear shoes and socks and take off the boot. I have kept it on for two extra days just to make sure that the toe is healed. Now that the stitches are out, I can begin to resume a “normal” routine.

On the way home from surgery and throughout these weeks I have been thinking about this process. I admit, I was a bit worried about how I would manage with the boot, but at the same time I thought to myself that sometimes you just need to bite the bullet and put up with a little discomfort, be it physical or mental, in the short-term in order to reap long-term, benefits. It’s not as if I was in stupefying pain and required pain pills to function. While there was pain, it was tolerable and there was an end in sight. I did not have any type of life-threatening disease.

I also realize that I am fortunate enough to have the resources (meaning, insurance) to take care of the problem and my case was minor. I’m not trying to belittle the potential risks of untreated hammer-toe, especially for a person like me who cannot stand up without devoting at least 75% of my concentration to doing so. But in context, this was pretty minor surgery.

As I am approaching the end of my recovery, I am happy that I endured the pain for the gain of even footing. There were some tricky times throughout the process and in some instances major frustrations because of the extra limitations I had to endure. Hopefully this will all soon be in my rearview mirror and I will move forward and forget about the less-than-enjoyable parts of the process. But I won’t forget an important lesson that can benefit us all; keeping a positive mindset throughout this process was key. It would not have helped to worry endlessly before the surgery and during my recovery about everything that could go wrong, how uncomfortable I would be and how further disabled I would feel. Instead, I’m thinking about the future and how I will not have to any time soon (hopefully!) worry about falling down and seriously hurting myself because of my hammer-toe.

https://happyonwheels.com/611/

You Can’t Control the Weather

It’s Not Easy, But You Must Get Your Mammogram

No Pain, No Gain

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