Archive for 'support'

A True Story of Living with Fibromyalgia

Monday, April 30th, 2012 at 12:49 pm  
Leave your comment

Before Fibromyalgia, Carol enjoyed working and was a true social butterfly. She loved to cook, host dinner parties, enjoyed long walks and hiking with her husband; active was an understatement. She was the typical work-a-holic who always had goals and met them in record pace. She worked her way up the ranks; always taking on more responsibility. She had pride in her work and did it well. She didn’t realize that her body was slowly turning against her. Eventually her body had enough. She had no choice but to face reality.

.
My hips were not working and I was in constant pain. After doctors kept extending my sick leave, I lost my job. My world was tumbling down around me.
.

Through a series of events, and the help of a friend who knew what to look for, Carol discovered she had full-blown Fibromyalgia. It didn’t matter what started it; the sprained hips, working too hard, too much stress, losing her job, her husband’s job being relocated to another state…no, all that mattered was this thing called Fibromyalgia wasn’t going away. With Fibromyalgia, Carol has chronic pain all over. Exhaustion comes from doing a load of laundry or cooking a meal. 

.
A simple shopping trip makes me feel like I danced all night and was dragged home by a semi. Thoughts and words don’t match up. Not able to concentrate, my memory gets scrambled and depression sets in. I have no control over my body from one day to the next, and sometimes from one hour to the next. Weather changes and cold damp air can send me into a tailspin, causing flare-ups for days, weeks, or months. I often ask, “Why me?”

Fibromyalgia causes pain that waxes and wanes with no rhyme or reason. From burning and tingling to stabbing and crushing, fibromyalgia pain can spread from one area to another, bouncing around like a ping-pong ball, or spreading over the entire body all at once.  Despite this harsh reality, Carol has found there are hidden blessings with Fibromyalgia because it forces you to slow down. Fibromyalgia has a way of making you appreciate the simple things in life. Right now, Carol is still mourning the ‘old me.’

.
I just want to feel normal again.  Support groups are essential to holding onto any sanity when you have chronic illness. ‘Treatment Diaries’ provides my online virtual daily dose, while ‘Daily Pain’ provides my monthly, long awaited hug of understanding and reality.
.

Carol is a TreatmentDiaries user and friend.  We thank Carol for her insight into this chronic illness and we welcome you to join us for Your diary – Shared healing at TreatmentDiaries.com.Continue your page here…

Kidney Disease, Cancer, You & Libre Clothing

Monday, April 23rd, 2012 at 11:46 am  
Leave your comment


In January of 2008 I learned of kidney disease, and inconsequently, dialysis for the first time. By February, I knew it all too well. My mom had been put into the hospital, and ultimately, put on dialysis because of sudden loss of kidney function for unknown reasons. It was scary and sad, and ultimately I wanted to help in whatever way possible. I wasn’t sure what to say or do. It was new to us all, and being away from her at school was harder than I had imagined.

From that day on our lives were changed, hers especially, with dialysis treatments three times a week for up to four hours at a time. She had to retire from teaching after 28 years so she could make her treatments and her life suddenly revolved around this disease and the discomfort of treatments that came along with it. People always say “Let me know if I can do anything to help,” but what can we really do if we’re not in the medical field? Offer kind and compassionate words, support them in whatever way possible? It wasn’t enough for me.

I struggled realizing how hard things were for her. She didn’t have the freedom she once had and now relied on a machine in order to stay alive and healthy. Daily tasks now put her on the brink of exhaustion, and it was hard for us all to realize that this disease was taking a bigger toll on her than we had originally anticipated.

In the Fall of 2008, I was a senior at Miami University minoring in Entrepreneurship and was looking for an idea to pitch to the class for our semester long project. I called my mom to ask how her day had been and realized that I was hearing the same problem over and over, “I’m so cold during treatment and I can’t cover up with a blanket, so I’ve been cutting holes in my old sweatshirts to wear. It’s pretty ugly but it keeps me warm!” Then a light bulb came on. Why should she have to sacrifice style and dignity just to stay warm for treatments?

That is when Libre was born, and there was no turning back. Myself, and three others (Mandy Eckman, Tess Schuster, and Bethany Skaff) forged ahead during our class project, winning the business competition at the end of the semester and vowing that this was what we wanted to pursue after graduation the following spring. That next semester we worked with professors to raise capital and research manufacturing to get things in place. In March of 2009 we became Libre, LLC!

Libre is a clothing line made specifically for chemotherapy, dialysis, and other infusion patients. Our clothing is an everyday staple in anyone’s wardrobe, but has discreet areas of access specifically for a patient’s treatment site. The clothing keeps the patient covered and warm while keeping the treatment site accessible, and visible, for nurses. Zip it open when you’re at treatment, and zip it up when you’re done.

I was not the only with personal ties to the disease through my mother; all four of us were connected to these diseases in one way, shape, or form. Our passion for Libre is driven by helping those we love, our very supportive customers, and all of those patients out there who can benefit from our products. “Libre” means free and open in many languages, it’s our goal to make patients days a little more Libre!

I’m happy to say that my mother was blessed enough to receive a kidney transplant from my best friend in December of 2010. it was an amazing and scary time in my family’s life, but knowing the new life, and freedom, my mom would gain was worth it.

As you can see, resources and support were a huge part of this process and having a place to go, such as TreatmentDiaries.com, would have been so beneficial for my mother and family. Knowing what to expect, and receiving support from those who have been through this first hand is something that everyone deserves to be aware of and be a part of.

Thank you again to Amy for giving me the opportunity to tell my story and more about Libre! We love what Amy and Treatment Diaries represent and we’re very excited to be working closely with her to bring positiveness Libre Testimonials, support, resources, and more to those who are willing to connect and help each other. deserves, to make their time through whatever illness that much more bearable.

 

*You can contact us at Info@LibreClothing.com, or go to our website www.LibreClothing.com

World Kidney Day 2012

Monday, March 5th, 2012 at 11:48 pm  
Comments (304)

 

Have you ever considered donating a kidney?  Each one of us is born with two and can live with one – so why not make a difference and give life to someone in need?  This is a personal topic for certain, and one that comes to mind for some on World Kidney Day 2012.  For those living with kidney disease the daily stresses of dealing with dialysis to stay alive, the fatigue which invades every minute of their day and not having the freedom to travel, can be isolating and stressful.  Many turn to social media for compassion, friendship and support in navigating a journey with kidney disease.

Some interesting facts to consider:

  • Someone is added to the kidney transplant waiting list every 10 minutes.
  • Each day 79 people receive organ transplants. However, 18 people die each day waiting for transplants due to a shortage of donated organs.
  • Organ transplantation has become an accepted medical treatment for end-stage organ failure.
  • As of 2009, the percentage of recipients who were still living 5-years after their transplant is: Kidney – 69.3% Heart - 74.9% Liver – 54.4% & Lung – 54.4%

 

What are actual recipients of a transplant sharing? Many share their personal stories on TreatmentDiaries. Below is a recent diary written by an ”End-Stage Kidney Disease” TD user at www.treatmentdiaries.com:

.
“I’m 28 years old, I was born with Kidney Failure and on October 26th, 2011 I received a deceased donor Kidney Transplant.  I used to feel so run down and tired that the easiest things were becoming harder and harder as life on dialysis wore on and on. Some days just getting out of bed was hard.  It was like I had to force my body to get up; I had to force myself to eat and drink. But now I don’t need to work at any of it.  In fact, my body works like normal. The feeling I have in me is just – WOW!  The new kidney I got from a stranger has changed my life. Even if this kidney decides to fail tomorrow, I will not be all that sad because the last 3.5 months have been amazing, sure I’ve had a rough start with it but I’ve also had a 3.5 month break from dialysis, met some wonderful people at clinic and have decided that there IS more to life than going to dialysis 3 days a week and feeling like my life is over and done with before I’m even 30. And you know what? It’s all because some random person in the world, I didn’t know, decided to be an Organ Donor. You are heroes in my world; a total stranger who was kind enough to give me my life back.”Survivor and TD User
.

 

Today there are more than enough people waiting for an organ to fill a large football stadium twice over.  This is a sad statistic, but one where each of us can make an impact.  TreatmentDiaries connects those on a similar journey with illness and inspires even those with any illness with the real life stories of others.  Living a life affected by illness can be lonely – we don’t want you to be alone any longer.  Start sharing with others today and be inspired to live well in your illness.  Your diary…Shared Healing!

Rare Disease Day 2012

Wednesday, February 29th, 2012 at 2:11 am  
Comments (1,097)
AreU2

How do you find the individuals who truly understand the disease you live with?  Imagine a disease so rare that you are one in a million or possibly one in five million?  It’s certainly not like having diabetes or breast cancer; unfortunately these connections are easy to come by.  On the flip side, rare diseases come in many forms; there are roughly 5,000 – 8,000 known throughout the world.  Many of these rare diseases are difficult to spell, pronounce and even treat let alone understand well enough to share the details with those who don’t have them.  In this scenario, the need to find someone who is “just like you” is vital to your peace of mind, well-being and ability to relate to others for encouragement and support.  This is a goal often difficult to achieve and can prove challenging.

Rare diseases affect so few people that they are often referred to as “orphan diseases”.  There are some diseases that are truly one-of-a-kind and usually happening because of a genetic defect, it can be difficult to find the support you need to feel better in your disease; connecting through shared symptoms and treatment insight can provide perspective on what might be misdiagnosed, undiagnosed, and incurable providing the encouragement you need in a world of isolation.

Social networking can assist an individual in finding that connection (needle in the hay stack) of rare diseases.   As a result of living with a rare disease, there are fewer medical professionals with a focus on these medical conditions and often fewer proven treatment options to consider.  Learning how others are living with a rare disease and their treatment approach is invaluable.  Preserving your anonymity and protecting your privacy is also important in meeting this need. Treatment Diaries is a great way to find people who understand.

Actual TreatmentDiaries passages:

“It is so frustrating when you KNOW you’re sick and the doctors just want to “pick” a diagnosis so they can get you out of wherever you are and on your way. In all fairness to them, I do think they mean well, for the most part. My GI wants to pin IBS on me because he can’t find anything else even though I have tons of esophagitis, white plaque coating the esophagus and severe gastritis, not to mention it feels like someone is putting a curling iron into my large intestine and trying to curl it…maybe I have a rare disease!” EDM

“I disguise my disease very well. I smile, I laugh, I cry every day! I try to enjoy my life as much as I can. But sometimes I feel overloaded and frustrated with my body, with my health and with the crazy mix up way that this disease and I get along. The disease usually wins out in the end, but I want to fight!” TAC

Would you like help adjusting to living with a rare disease?  People, friends and family mean well and want to offer sympathy through words like, “I know what you’re going through.” In actuality, the only people who can really relate are people who are dealing with the same disease or one like it. They can offer insight for dealing with symptoms, experience with specialists, advice for preventing complications, and most of all, an encouraging ear from someone who really understands. You may just need to vent, or you may need more in the way of communication with others and access to resources.

Do you have a rare disease or know of someone who does?  TreatmentDiaries can make a difference in a life affected by illness.  Isolation is no longer the only option. Users from around the world care about personal struggles with rare diseases and the conditions which consume your days.  Find someone just like you at www.treatmentdiaries.com and start feeling well in your illness.

Welcome To Treatment Diaries’ New Blog!

Tuesday, February 21st, 2012 at 4:38 pm  
Comments (3,344)

Featuring Recent Posts WordPress Widget development by YD