7 posts from September, 2016

“The most important thing is to know you are not alone” — Member Vicki opens up about her TBI

Posted September 13th, 2016 by

Vicki (Vickikayb) is an avid gardener, volunteers at a wildlife rehabilitation center and loves to cheer on the Kentucky Wildcats. She’s also been living with a traumatic brain injury (TBI) since 2004. In a recent interview, Vicki shared how she lives a full life in spite of her condition and how it’s inspired a new interest in brain injury advocacy: “Who better to give a voice to this cause than someone who is living with a TBI?”

Check out what she has to say about discovering new coping methods and finding support from others who understand.

Can you tell us a little about yourself? What are your hobbies and interests?

I am originally from the Kansas City area in Missouri until 2010 when I moved to Kentucky to be closer to my daughter and her family. I received my traumatic brain injury in 2004 from an impaired driver who rear-ended me going 74 miles per hour while I was at a dead stop.

I spend my time volunteering for Kentucky Wildlife Center in Lexington, KY. We take in all kinds of wildlife babies and rehabilitate them so that one day they can be released into the wild again. I helped them with a vision that they had to raise a vegetable garden with no pesticides which has been successful. I am also helping with a garden at Neuro Restorative where I attend therapy sessions. I find working in the dirt and growing plants, vegetables and flowers is a successful coping skill, which is helpful when I become emotional.

I also volunteer with Brain Injury Awareness of Kentucky. Just this past summer I helped distribute bicycle helmets, bringing awareness to the safety of riding a bicycle with proper equipment — a helmet — no matter what age. We fitted the helmets to children, teenagers and adults.

When it comes to watching sports on TV or at a stadium, I am there supporting my team, the Kentucky Wildcats. I am always eager to learn about different topics, especially brain injury, which is close to my heart. At the end of the day I am working towards being an advocate for any type of brain injury. Who better to give a voice to this cause than someone who is living with a TBI?

What was your diagnosis experience like?

Getting my diagnosis was the easy part for me; the difficult part was finding the right help I needed to start my journey to healing. At the time I was still living in Missouri and my daughter was living in Kentucky. So everything was left up to my doctor and me to work on my deficits, which at the time I didn’t view as severe. I participated in physical therapy and speech therapy until I hit the amount of units you were allowed per year on Medicaid. My daughter found out from other people that I was not doing as well as I was portraying. I was broke because of my impulsivity with money and I was sleeping on other people’s couches here and there. This is why at the end of 2009 I moved to Kentucky because my daughter was expecting her first child and I wanted to be close by.

Even in Kentucky I continued the downward spiral till I hit bottom, not taking my medication when prescribed, sleeping at odd times of the day and not eating well. That is when my family said they didn’t have the education or knowledge to be able to help me. That is how I ended up at NeuroRestorative in Georgetown in 2011. I started in the residential program where during the days I received occupational therapy, behavioral support, counseling, and speech therapy. Since that time, I have graduated from speech therapy and moved out on my own in November of 2012. I am fortunate that Kentucky has a waiver program that covers the cost of these services. I wish more states would have this option as well. This is when my journey to healing started!

In your profile you talk about writing down your thoughts as a form of therapy. How has it helped you manage your TBI? Do you have any other coping methods?

When I came to Neuro I had no idea what coping skills were, let alone how to practice them. First of all, I learned about the Coping Skills Triangle which consists of thoughts, behavior and emotions (pictured).

At first I started journaling for my sessions with my counselor so I wouldn’t forget to talk about certain topics. That’s when I started seeing that writing was a way to express myself. At the time they had a newsletter at NeuroRestorative in which I decided to write each month entitled, “Just My Thoughts,” where I would write about my struggles, coping skills and any issues that I was going through at the time. My purpose was to show other participants that they were not alone and that other people were struggling just like them. I have everything that I have written since 2012 and recently have put them all into a blog called “Learning Vicki.”

Furthermore, I have a big list of different coping skills that I use to help me when I feel overwhelmed or I’m not thinking clearly. I had them written down at first so I could pull them out when needed but today I find myself just doing them without thinking. Some of these coping skills are taking pictures of nature, walking my dog and visiting with my neighbors. At home I even turn up the radio and start dancing in my apartment. I do whatever brings enjoyment to me and takes my mind off the situation until I am ready to handle what is bothering me.

You’ve mentioned that “education is the biggest tool you can give other patients.” What’s the most important thing you’ve learned in your journey with TBI?

First of all, I have put myself out there to others to let them know that they are not alone on this journey. I feel the most important thing I have learned in this process is to share my experience. When I first found out that I had a brain injury, my thoughts were all over the place and I wondered what my next step would be.

I found out that a few of the people I went to high school with also had head trauma. So, I contacted them personally saying that I also had a TBI and maybe we could support one another. I kept talking to one friend in particular to see how he was doing and gave him an outline of how I began my treatment — who diagnosed me, how to talk to his doctor and how to receive therapeutic rehabilitation. That was a year ago, and I am happy to say that friend is now back at work and starting to regain some of his life back.

If I can’t answer a question for someone, I will see if I can find out the answer and get back to them. The most important thing no matter what disease or injury you might have is to know you are not alone and there are others who are either going through the same battle or have beaten it. We all need to be each other’ cheerleaders, to encourage each other to hang on because tomorrow is going to be better and we will get through it together.

How has it been connecting with others on PatientsLikeMe?

It has been a wonderful experience being able to talk to other people who are going through the same illness that I’m experiencing. It helps because you realize, “I am not the only person going through this or that feels like this.” It has also taught me to be thankful for what I have. It has been a tool to educate myself on what some other people might be trying or what didn’t work. I love being able to keep track of my moods, my emotion charts and how I’m feeling overall, and to read others’ messages of encouragement.

I also like sharing my data with researchers to help them with clinical trials, and being able to find articles that help me better understand my condition. It is great to be able to go to one site and find everything that you need. I wish I had known about PatientsLikeMe back in 2004. Every chance I get I tell people to go check the site out!

 

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“I have learned and grown from this and now I want to help others” — Iris shares her story for Ovarian Cancer Awareness Month

Posted September 8th, 2016 by

Iris posing on her motorcycle

September is Ovarian Cancer Awareness Month, so we caught up with member Iris (Imartinez) to find out what living with this condition is really like. Iris opened up about getting diagnosed at just 28 years old, the challenges of her treatment journey and her passion for riding her motorcycle. For Iris, attitude is everything: “Having a POSITIVE mindset, I believe, makes a big difference.” Here’s what else she had to say…  

Tell us a little about yourself. What are your hobbies and passions?  

I’m an outgoing young adult who enjoys motorcycles! Since my diagnosis everything about me changed. My hobbies, my way of thinking, how I view life. One thing that has not changed is my passion for motorcycles. When I gain my strength back and summer comes back around that will be one of the main things I’ll be doing! I was a very selfish and materialistic person before my journey. Now that I have endured a long eight months of treatments, my hobbies and passions have changed. I enjoy reading about others who are going through a tough time and offering an ear or hand to help. I want to share my story to help others and let them know they are not alone! I want to raise money and participate in walks for cancers, not just ovarian but all types of cancers. I started crocheting as a therapeutic way to get through my transplants which helped me so much. Spending time with my family was always and still is a must.  

What was your diagnosis experience like?  

My journey began in July 2015 when my gynecologist found a mass on my ovary. I had my first surgery due to this immature teratoma in August, where I lost my right ovary and fallopian tube. Then I received the call that they found cancer cells in this teratoma, to which I should follow up with chemotherapy. I was devastated I couldn’t believe the message, I just remember crying and wondering why me. I did not follow up with chemotherapy, due to the fact that I was feeling good after surgery and had high hopes that I would be fine.

As the months passed, I began to feel pain in my lower back and thought nothing of it. I even mentioned it to my oncologist who said it was probably nothing, so I continued with my life. That was back in October. By January the pain had become so severe that on Friday, January 15, I left work early and went to the emergency room. There I was admitted and told my cancer was back with an aggression so intense I would have to start chemotherapy that Sunday.

How has life changed for you since your cancer?  

My whole life stopped along with my heart! I couldn’t believe it but I kept that smile and high FAITH and hope on! So began my journey as a cancer patient. I was told I would have to go through four rounds of very intense chemotherapy known as BEP. After that I may need to follow up with surgery.

It’s now been seven months and I’m still in the life of a cancer patient. I underwent two more life changing surgeries. On top of the surgeries, they wanted me to do two stem cell transplants. The second surgery I had to go through was the most difficult one for me. I didn’t even want to go through with it. I was ready to give up and just go somewhere beautiful and live my life out. Then I realized my time on this earth is not done, I have so much to do and so many people to help! So I did the surgery. They did a full hysterectomy, leaving me with a huge scar on my abdomen. I was even told that I may have needed a permanent colostomy, which when I woke up I did not! The moment I was being told this was after I had endured the four months of chemotherapy so I was mad. My emotions could not be explained at that moment. It was the first time I cried in front of anyone about my cancer. 

Then the next surgery I had to do was a removal of a mass in my chest. Chemotherapy killed a lot of the tumors that went from my pelvis up to my chest but left me with two. After having my last surgery, I was super sad! Knowing that I could not have a baby made things very difficult for a woman my age. Now I had to deal with them cracking my chest cavity open and leaving another scar. To get past that and prepare my mind for this, I would tell myself I’m going to look like the corpse’s bride. It was my way of coping with a new scar. So two weeks later we did that surgery. The night before the surgeon called me and told me they were going in through the side, which made me very happy! But with one little defect, one of my vocal nerves would have to be sacrifice, due to the tumor being too incased around it! I thought to myself oh of course. I got through both my surgeries just fine with a new voice I call Barbie. 

 I’ve become a super grateful person and an all-around different gal.

Iris shares her cancer journey on Snapchat

September is Ovarian Cancer Awareness Month. How do you share about your condition, and what have you learned in your journey that you think people should know?  

I will be participating in the 5K Ovarian Cancer walk Sept. 11, now that I have completed my treatment plan. I have shared some of my journey on Instagram but honestly, I shared a lot more on Snapchat to update my family and close friends. I have always been a strong willed person so for people to see me in such a weak stage bugged me. But since this journey I have broken out of that shell. I have taken many pictures since January until now, I even did videos. Now that I am at the end of this treatment plan I want to help others and let them know they are not alone! I have been working with doctors, an art therapist, nurses and anyone I can connect with to get my story out there. I want to begin to speak at events and sponsor walks. I will also be connecting with young adults’ cancer society.

In my journey I have learned many things, about myself and life. One thing that has stuck with me is how to be grateful. I’ve learned to feel for others and understand that everyone is different. Not everyone can take a situation and learn and grow from it. I want people to know that even though they may be going through a hard time in their life, the sunshine does break through the clouds. That they truly are not alone in their suffering. That there are people out there who can feel for them. Always educate yourself about what’s around you to help yourself. Having a POSITIVE mindset, I believe, makes a big difference. Staying positive through everything is what has also helped me a lot.

Since joining in May, you’re pretty active on PatientsLikeMe – how has it been for you to track your health and connect with others on the site?  

Although I have just recently joined this year, connecting with others has been a pretty joyful situation. Being able to vent about how I feel and ask other patients for advice has been amazing. Tracking my health on PatientsLikeMe keeps me on track with what to ask doctors and look back at how bad some of it was. This is the only website I use to track and vent about my cancer. It’s easy to use and it was located on my Patient Gateway.

How has dealing with cancer as a young adult been?

Dealing with this cancer at just 28 has been one of the most difficult things put in my path. I had just landed the job of my career, as a Real Estate Paralegal. In an office were we all get along and everything felt just right. I was living by myself and getting the grasp of being a young adult on her own. I had plans to travel and plans for family birthdays that couldn’t be done. Dealing with my mother having sarcoidosis was another thing that ran through my mind.

I couldn’t be sick not now, not at this time of my life. I couldn’t vent to anyone about it because I didn’t want to stress anyone out. I was the healthiest, strongest person in my family — to be sick with cancer was devastating. I couldn’t put it in words, the way I felt. Finding people to comprehend what I was going through was tough. Going to appointments and never seeing people in my age group made it even worse. I felt like the only young adult whose life had changed. Seeing everyone continuing to live their lives made me feel even worse. I feel like there isn’t that much support for young adults. I also feel like a lot of these young adults don’t want to speak about what they have been through. I can completely understand why. It’s tough, I never wanted to be looked at differently or anyone to feel bad for me. So all I can say is that it’s tough, but I have learned and grown from this and now I want to help others.

 

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