146 posts tagged “Awareness”

March is Brain Injury Awareness Month. Let’s learn more, together.

Posted March 21st, 2017 by

Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA).

At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:

Brain injury awareness gender spread

Brain injury awareness age groups

 

PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI.

Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page.

If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in the community.

 

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Going the distance for MS awareness

Posted March 6th, 2017 by

Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to cross Austria off her list. See what she has to say about overcoming the physical limitations of her condition.

You’ve run 54 marathons and 41 of those have been after your MS diagnosis. How has running changed for you since your diagnosis?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

Running has given me so much. When I was first diagnosed and depressed, running was my therapy to cope with the overwhelming sadness. However, I started tripping and falling while running. I thought I was tired from overtraining. I soon learned that I was falling because I have a common symptom of MS called drop foot. My running became laborious and depressing. My neurologist told me to lower my expectations and that ignited a fire in me to not give up. I found an orthotist and he fitted me with an ankle-foot orthotic (AFO). It’s made of carbon fiber, so it’s light and flexible enough for running. It is not necessarily made for marathons, per se, but I make it work despite the cuts and bruises. I guess that is a long way of saying that running has made me stronger.

Aside from your custom carbon fiber ankle foot orthotic, what other things do you do to help with your running?

I cross train to help with cardio-vascular fitness. My husband and I ride 20-30 miles along Pacific Coast Hwy very early in the morning (traffic scares me, especially being clipped into the pedals).

I also lift weights. My right thigh is very weak from MS and I can only lift it 3-4 inches off the ground. I do a lot of compensating with my left side when I run. I try to strengthen all of my muscles to try to keep them in balance, but I do have atrophy in my right leg.

In general, what advice would you give for someone living with MS who wants to work towards becoming more physically active?

First, I have to throw in the caveat to talk to your doctor first! Next I suggest setting small, attainable goals. For example, if you don’t exercise at all, make a goal to walk 10-15 minutes, then start increasing by 5-10 minute increments when you feel confident.

My very first running race was a marathon (because I’m crazy). That was a big goal and I attained it, but I suffered a lot at the beginning. My first training run was down my block and I walked back home crying. My husband likes to tell everyone that story! But I kept at it and in 6 months I went from one block to 26.2 miles. It was a slow marathon, but I did it! However, I should have signed up for shorter races first to keep my morale high.

Small attainable goals and small concerted efforts to make change!

Right now you’re in the middle of a big idea you had to raise money for the MS Society. You committed to running 7 marathons on 7 continents in the span of a year. You’ve already run in Cape Town, South Africa; Buenos Aires, Argentina; Honolulu, Hawaii; King George Island, Antarctica; and Tokyo, Japan. Next up are Vienna, Austria, and Christchurch, New Zealand. What’s been your favorite experience so far? What’s been a challenge?

Cheryl Hile MS marathon runner

Photo by Rachel Hatch

I’ve had a lot of great experiences. My favorite marathon so far is Cape Town. The scenery was beautiful, the people were very friendly and even though it is a large international marathon, it felt like a tight knit community. The highlight of the trip for me was connecting with the Multiple Sclerosis South Africa group. They were absolutely lovely and even though our trip was short, we bonded. Meeting people and making friends are my favorite things about my trips. People really make it more special.

The White Continent Marathon was by far the biggest challenge. I was prepared for the cold, but I underestimated the terrain. It was very rocky (from pebbles to boulders) and it was so painful on my feet. I had to walk a lot of it because my right foot kept sliding. I can feel my left foot and use my toes to balance myself. However, my right foot is numb and I cannot move my toes well. That, coupled with a rigid footplate on my AFO, made it hard to keep steady on the undulating terrain. I was sore in places that I didn’t know had muscle!

We’ll be following up with Cheryl once she finishes her final two races in Vienna, Austria, and Christchurch, New Zealand. You can keep track of her progress on her blog!

On PatientsLikeMe

Cheryl talks about having drop foot, something reported by 990 members on PatientsLikeMe. She’s had success using an ankle foot orthotic (AFO) to treat it. Here’s what members have to say:

In fact, members have a lot more to say about this – 101, 941 forum posts worth, to be exact. See what they’re saying and learn more about who’s experiencing drop foot!

What are you doing to raise awareness about MS this month?

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World Cancer Day – Voices from the community

Posted February 3rd, 2017 by

Over the last year, we’ve shared many stories from the cancer community on the PatientsLikeMe blog. This year, in honor of World Cancer Day, we’d like to highlight some of those stories:

 

Member Iris (Imartinez), shared her story for Ovarian Cancer Awareness Month. 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.” Revisit her story.

 

 

 

 

Member Clare (Riverdale) shared her story – a diagnosis of non small-cell lung cancer while her husband was already living with prostate cancer. While supporting each other through chemotherapy and radiation, the couple has made an effort to eat healthy and keep up the active lifestyle they led before. Learn about her journey.

 

 

 

Member David, a member of the 2015-2016 PatientsLikeMe Team of Advisors, opened up about living with Stage IV lung cancer and how he hopes to be an inspiration to other cancer patients. David stresses the importance of forging a strong partnership with his care team and reflects on what he calls “some of the best years of my life.” Check out what he had to say.

 

 

Share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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Thyroid Awareness Month

Posted January 24th, 2017 by

January is Thyroid Awareness Month. Why do we need awareness? An estimated 15 million Americans have undiagnosed thyroid problems. Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.

Who has HYPOthyroidism on PatientsLikeMe?

  • 6,920 patients have this condition
  • 30 new patients joined this month
  • 1,271 say hypothyroidism is their primary condition

Who has HYPERthyroidism on PatientsLikeMe?

  • 518 patients have this condition
  • 3 new patients joined this month
  • 166 say hyperthyroidism is their primary condition

A simple self-exam to “check your neck” could help with early detection or help you find lumps or enlargements in the neck that may point to a thyroid condition.

Think you might have a thyroid problem? Here’s how to perform a neck check at home – all you need is a handheld mirror and a glass of water:

What’s one thing you’d like others to know about living with a thyroid condition? Comment here or head to the forum to join the conversation.

 

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Cancer Awareness in September: prostate, thyroid and ovarian

Posted September 29th, 2016 by

September is all about education — and not just because it’s back to school month. It’s also the official awareness month for three different types of cancer: prostate, thyroid and ovarian. Here’s a snapshot of what national organizations have done to spread more understanding…

 

Prostate cancer: #StepUp, get checked

The Prostate Cancer Foundation (PCF) has launched a #StepUp campaign to empower men to take control of their health and encourage their families to support them. It’s also about early detection — have you or men in your life been screened for prostate cancer? Get checked, and learn more in these helpful guides including questions to discuss with your doctor.

 

Thyroid cancer: Get a neck check

With tips, awareness tools, graphics and more, the Thyroid Cancer Survivor’s Association offers enough information for people to stay involved throughout the year.

 

Ovarian cancer: See the signs, #KnowOvarian

Do you know the common signs of ovarian cancer? It can be difficult to detect, so the National Ovarian Cancer Coalition has been using the hashtag #KnowOvarian this month to gain more attention for this condition that affects 1 in 75 women. Check out the website to learn more about the risks, symptoms and what you can do to get involved.

 

 

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The community speaks out for Pulmonary Fibrosis Awareness Month

Posted September 1st, 2016 by

How much do you know about pulmonary fibrosis? Today kicks off Global PF Awareness Month, and to spread more understanding for this condition which affects over 6,600 PatientsLikeMe members, we asked the community to speak up.

In a recent forum thread, members chimed in with the one thing they think people should know about what it’s like to live with PF. Here’s a snapshot of what they had to say:

 

“…how hard it is to deal with the fact that you can’t do things you used to do and that even things we typically take for granted like showering are very difficult as the condition worsens.”

— PatientsLikeMe member living with PF

 

“Don’t settle, we have options, find a doctor that specializes in interstitial lung diseases which pulmonary fibrosis is part of. Let them decide with your help as a patient what is best for YOU. We are always so quick to put a pill in our mouths and hope it works. With this disease that isn’t necessarily the answer. Live with IPF/PF and advocate for your health.”

— PatientsLikeMe member living with PF

 

“I have lived with pulmonary fibrosis since i was diagnosed 10 years ago but i am certain i had the symptoms many years earlier. Since my diagnosis, which the medics tell me is idiopathic, i have been on the roller coaster that many patients will be only too familiar with. Nobody knows the cause. Nobody knows how to treat it. And nobody knows a cure. And until there is a significant increase in research funding nobody ever will.”

— PatientsLikeMe member living with PF

 

You can see the rest of the responses and add your own experience here. And be sure to check out the Pulmonary Fibrosis Foundation’s awareness month toolkit to find out how to get involved on social media and beyond.

 

 

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“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

Posted April 15th, 2016 by

In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors!

Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.”

Tell us about your diagnosis experience.

It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else.

I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else.

Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. But there are more dangers to the body than just those two symptoms. I have chronic pain in my hips and my knees, which is strange since I have two total knee replacements. So it’s really not a joint issue. It’s a connective tissue issue. So my whole body aches and is sensitive to the touch, meaning if you just touch me, I feel pain where you touched me.

How would you describe Sjögren’s to someone who doesn’t have it – how does it affect your daily life?

Sjögren’s is a close cousin to lupus and is treated in the same way and with similar medication. I wake up early to take my thyroid medication. Then after light therapy for my depression, I can eat and take my Plaquenil for the Sjögren’s, and the vitamins and other medications for the bipolar and depression.

But during the first hour and a half, I am in pain. I have to take pain killers to function. I still get break-through pain from walking too much or sometimes from doing nothing but sitting.

I have something called “flare-ups” where the pain is so excruciating, even my daily meds can’t help me. So I have to take Prednisone for six days. This usually means I’m down for a week in bed, sleeping and dizzy and just feeling awful.

You never know when a “flare-up” will occur, so making plans to do future things is nearly impossible. I take it day by day and sometimes, moment by moment.

How has it been managing your Sjogren’s syndrome along with bipolar II, depression and thyroid issues?

It was very hard in the beginning. I had over 20 years to learn the ins and outs of dealing with mental illness. But I was clueless when dealing with chronic physical pain. Talk therapy doesn’t work when it feels like a knife is being twisted in your thigh.

I was lucky that I have medication which is working for me presently and at the time of diagnosis. I found an online support forum which answered many questions my doctors where unable to answer for me.

There are times when you do feel fine and the pain level is low and you just want to do EVERYTHING! But you have to pace yourself, or you will find yourself exhausted and unable to do anything. This is something I’m still working on, the pacing. You are so used to feeling bad, that even the small windows where you feel like a human being again have to be taken slowly.

Overall, it is very hard dealing with depression/BP/anxiety, etc. and not being able to walk some days or being so physically tired that it’s an effort just to get up to take care of yourself. But you do it.

What’s your best piece of advice to other people managing multiple conditions?

Don’t dwell on all the illnesses that may be on your plate. It will make you numb. Instead, just keep moving forwards. Adapt, improvise and overcome. I remind myself of this, because you have to adapt to whatever situation you are in and you have to improvise on different ways to look at your life and sometimes it may be dark, but you have the strength to overcome what you may be feeling at the moment. Take it moment by moment. Don’t look at the big picture, just the things YOU can effectively handle and change.

This month is all about awareness – what do you do to stay informed on the latest research and information about your conditions?

I read the forum posts and I subscribe to some newsletters. I find the most helpful information from the Sjögren’s Syndrome forum I frequent and I also read articles on the Sjögren’s Syndrome Foundation.

What was the most valuable thing you learned in your experience as a member of the 2014 Team of Advisors?

That we all have something in common, no matter what our illness may be. When I joined, I wasn’t diagnosed with any of the other physical ailments I have now, so there were times I felt out of place. But by listening to others talk about their experiences, I could apply my condition to their condition and learn a new outlook on where I was in my life.

 

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“We are the ones that know what is required to give us the care we deserve” — Member Ann shares her story for Rare Disease Day

Posted February 29th, 2016 by

 February 29 only comes around every four years – and this year, it’s extra special: Today marks the 9th annual Rare Disease Day. In the United States, a disease is considered rare if it affects less than 200,000 people at any given time.

This year’s theme is all about elevating the patient voice, so we caught up with member Ann (annpkerrigan) to learn more about what it’s like to live with alkaptonuria (AKU), a rare disease that affects 159 PatientsLikeMe members. Here’s what she had to say…

How would you describe AKU to someone who has never heard of it?

I suffer from AKU, which is a rare genetic disease with no cure or treatment but not fatal. This is what I was told six years ago when diagnosed after many years attempting to identify my condition. AKU is a metabolic disease, which causes severe early-onset osteoarthritis. It can be a painful and degenerative disease.

Over the years, I’ve learned to adapt and make changes to my home. I live alone and it’s crucial I can manage everything. Prior to diagnosis my knees were very painful so I moved to a ground floor apartment in Bristol to be closer to work and because using stairs became impossible. My GP referred an occupational therapist to assess my home and she provided equipment to help, like a sock aid and a long-handled comb. She also authorized the council to install a wet room, which provided safety and independence. When my shoulders deteriorated it became painful to change gears when driving so I was able to get an automatic car through the Motability scheme in the UK.

How has your life changed since your diagnosis?

A major problem was washing my hair because I was unable to hold my arms up for any length of time, so I’ve been going to a hairdresser weekly for years. I’ve also lost three inches in height because my spine’s compressed. I’m only five feet now, so I’ve had shelves lowered in my flat and I’m currently saving to adapt my kitchen.

As for work and social life, everything’s changed. I haven’t worked since diagnosis, which coincided with redundancy because of my disease escalating. I contacted The AKU Society in February 2010 and was invited for three days to undergo tests to aid research and to help me. The trip was wonderful because I met experts who understood my disease and I no longer felt isolated. The tests revealed a lesion on my chest and I was referred for a CT scan, which identified a 9cm tumor tucked underneath my breast bone – beside my lungs and heart – which had to be removed. I wasn’t symptomatic and it was thanks to Liverpool this was identified!

The main problem I face is financial. Having left work at 50 I’ve lost a good income and standard of living. I’ve also spent my redundancy on emergencies like a new washing machine, refrigerator and to supplement my income, and have lost 15 years of pension contributions. However, the worst part is knowing there’s no cure, and trying to come to terms with it.

However, the AKU Society’s been brilliant, as has peer support, and I’ve been surgery-free for more than two years. But moving forward, I’m having a right hip replacement in March and carpal tunnel surgery in May. My social life is very different now because there are activities I can’t participate in, and although I’ve always loved to travel this is also difficult now. Essentially, my life has completely changed and while I try to remain positive and independent I sometimes suffer from depression.

What changes do you think need to happen in society to raise awareness about rare diseases like AKU?

AKU is largely an invisible disability – patients look perfectly normal on the outside. I have a blue badge for parking because I need the extra space to get my legs out of the car, and because I have a problem walking, but I’ve been shouted at for parking in a disabled space because I don’t fit the stereotype. So I’d like to see a campaign to highlight the difficulties of invisible disabilities. The government hasn’t helped either because they’ve targeted vulnerable groups in society and labeled the disabled as fraudsters. Families of AKU patients need support, too, and could help each other if a group was established or a forum available.

How can healthcare become more compassionate towards patients with rare diseases?

I’d like to see every newly diagnosed patient given counseling and have an AKU buddy for peer support.

Rare diseases like AKU are known as orphan diseases because they affect a small percentage of the population. As a result, they lack funding and largely remain unknown to government, medical practitioners and the general public. I would love to see a campaign to educate government, medical practitioners and the general public about invisible disabilities and rare diseases. I’ve been involved in teaching third year medical students for the last three years so that they’ll know how to identity AKU earlier and to think outside the box!  Medical practitioners need to listen to their patients and if a patient reports something that doesn’t easily fit a diagnosis, this could be the red flag pointing to a rare condition.

I think patients will start to receive better care once doctors listen and respond quickly, which will come about through teaching, improved resources, funding and changing the mind sets of the public and government. I’d also like to see more partnerships between patients with rare diseases, medical practitioners and government because we are the ones that know what is required to give us the care we deserve. Therefore, we need to educate and inform all the key stakeholders so that they too will become advocates.

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1http://www.rarediseaseday.org/article/what-is-a-rare-disease


National Donor Day: Changing lives on both sides

Posted February 14th, 2016 by

“Be Mine.” It’s the mantra of Valentine’s Day, but today we’re honoring those who’ve said, “Have mine.” February 14 is also National Donor Day, and it’s all about recognizing the most precious valentine of all: the gift of life.

For every organ, tissue, marrow, platelet and blood donation, there are two sides to the story. Check out how two PatientsLikeMe members describe what it’s like to be offered another chance at a life, and how it feels to give that opportunity…

 

Life after a lung transplant

“I have a new normal now, but that is ok because I CAN BREATHE! It is something most people take for granted until they can’t. I know I did. The first year after transplant is rough to get the meds right … the frequent bronchoscopies. I had a setback with CMV virus and have had GI problems (med side effects) but have gotten it straightened out. In three weeks is my one-year birthday and I am positive I would not be here now if I didn’t get my new left lung.”

–       PatientsLikeMe member

The memory of her father lives on

“When my dad passed away, nine people were given a new lease on life from him!  We received several letters from family members. Most very simple thank yous and a little about the new life the recipient has now. Those letters mean the world to me, even all these years later. It’s like Dad lives on in the joy others now have.”

–       PatientsLikeMe member 

How can you help?

Every 10 minutes, a patient is added to the organ donor waiting list. So what can you do? Register to become an organ or tissue donor, find a local blood or platelet drive or join the Be The Match national bone marrow registry.

And if you have received an organ donation – or are waiting for one – you can reach out to the transplant community at PatientsLikeMe.

 

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We can. I can. Start talking about cancer.

Posted February 4th, 2016 by

Every February 4, all corners of the world unite in the fight against cancer on World Cancer Day (WCD). What’s the purpose? To get as many people around the globe talking about a disease that continues to claim 8.2 million lives every year.[1]

How can you get involved?

Every action counts and the more people out there making noise – the better. Enough awareness and education urges people to take action and can save lives.

This year marks the start of a three-year campaign for reach and impact under the tagline, “We can. I can.” You can start talking by sharing one of the ready-made tweets on their site, add your WCD activity on the map of impact, support WCD’s “Talking Hands” on social media, join the WCDThunderclap campaign, download sharable materials and more.

And don’t forget to share your awareness efforts and experience with cancer in the PatientsLikeMe forum.

#WeCanICan, together.

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Rheumatoid Awareness Day: 7 things you might not know about RA

Posted February 2nd, 2016 by

Today is Rheumatoid Awareness Day, and we’re spreading the word about the condition that affects over 9,000 PatientsLikeMe members. Rheumatoid disease can manifest in many different ways – fatigue, joint pain, stiffness and fever, to name a few — so it can be hard to understand the full scope of this condition. To show the world what living with #TheRealRD is like, the Rheumatoid Patient Foundation has shared these seven interesting facts:

1.Rheumatoid disease is not a type of arthritis; arthritis is just one symptom.

Rheumatoid disease (RD) is a systemic disease related to immune function that can affect any part of the body including the heart, lungs, eyes, skin or joints.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2. Available treatments are not adequate for many people with moderate to severe rheumatoid disease.

About 1/3 of patients don’t respond to available biological disease modifying drugs. 

3. Rheumatoid disease is different in each person — and even in the same person over time.

Some people experience constant pain, and some have a series of “flares” and periods of lower disease activity. Symptoms can vary greatly from day to day

4. RA research is severely underfunded in the U.S.

RD is funded at about 1/12th the per-patient rate of similar diseases with comparable impact.

5. Rheumatoid disease is often an invisible illness.

Just because someone with RD looks good doesn’t mean he or she feels good.

6. Early, aggressive disease treatment has been shown to provide the best outcomes.

Those whose disease has been treated early have the best chance at achieving remission or low disease activity.

7. Remission is rare. Pain is not.

Remission rates have been reported as low as 6% in the average clinical environment. Most people with RD experience pain every day.

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“I had no idea that my thyroid controls so much” — PatientsLikeMe member Barbara shares her experience for Thyroid Awareness Month

Posted January 29th, 2016 by

January is Thyroid Awareness Month. So, how much do you know about the small, butterfly-shaped gland that influences the way your heart, brain, liver, kidneys and skin function? To help spread #thyroidawareness, we asked member Barbara to tell us about living with thyroid cancer and hypothyroidism, a condition that affects over 6,000 PatientsLikeMe members.

Barbara shares how her thyroid issues have taken an emotional toll on her, as well as some advice on being your own advocate: “Fight for your right to feel normal again.”

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

I really love photography and a new passion is gemstones. I have been taking photos since I was a kid.  I love landscapes and different and interesting people. I still have several film cameras but I love the freedom of digital. I enjoy video and web design as well. I have gotten the opportunity to study gemstones and it has opened up a big new world. I am currently studying how to identify gemstones. It is like being a detective.  There are so many different types. Learning their origins has been fascinating. I also love watching Kung Fu movies with my husband.

When you were diagnosed, what went through your mind?

Barbara took this picture on her trip to Holland.

My diagnosis was a little odd.

I went in for a regular Pap appointment and the doctor felt my glands and made an offhand remark, “Oh, you’ve had that checked,” and then continued on. I sat there stunned. I did not like this doctor so I didn’t say anything about it. When I got home I immediately called and scheduled a physical. It was during the physical that they examined the lump on my thyroid. They sent me to an endocrinologist who did a biopsy after joking that he could do it blindfolded. I did not like that doctor either. The results were abnormal but inconclusive. I was told that I needed surgery and that there was only a 20% chance it was cancer and a 20% chance that I would need thyroid medication.

I thought that I might die. I know that was an overreaction but I was scared.

I didn’t get a real diagnosis until after the surgery.  It was cancer, and within two weeks I knew I needed medication even though I still have half my thyroid.

How has your life changed after having thyroid surgery?  

I have become intimately familiar with exhaustion. I was told by doctors and friends and co-workers that managing my thyroid would be no big deal. Only one person gave me a real glimpse of what was to come. That was a professor that had a friend with extreme exhaustion due to his thyroid issues.

I have been tired, exhausted, angry, unreasonable, irrational and a nightmare to live with. The worst was the first year but it took many years before I started to feel close to normal again. The surgery was nothing compared to my symptoms afterwards especially since I didn’t have any to start with. They have no idea why I got cancer. There is some in my family and I have been told that there can be a link with melanoma, which does run in the family. That is something I am still learning about.

I can empathize much more with people dealing with mental illness because looking back it seems like I was crazy. I know I was not in my right mind.

Barbara took this picture on a trip to Holland.

I have learned to be very sensitive to my emotions.  If I realize that I am not feeling “right,” then I can take precautions. If it is a really bad day I may call in sick to work because it can affect my job performance. I seem to be more prone to migraines when I am off. It can be really hard to tell if I am hypo- or hyper- from my medication. The symptoms can overlap or be very similar. I have charted all of my lab results and read a lot of different research so that I can be my own best advocate. Learning more and paying close attention along with an alarm set for my medication helps a lot. I never ever miss a dose. Depending on my blood work I may adjust my dose by half a pill a week or every other week. I have found that I am very sensitive to dosages. I miss Levothroid — it worked better than the Levothroxine I take now.

In honor of Thyroid Awareness Month, what’s one thing you think people should know about living with and recovering from thyroid cancer?

There are many different ways each person may be affected. If they push you away, please be patient. I did not realize how horrible I was until I came out of the fog. I didn’t feel that sick at the time but looking back, wow. There is help; once I switched doctors the new one listened a lot closer to what I told him and he believed me. Fight for your right to feel normal again. I had no idea that my thyroid controls so much.

In your profile, you mention your doctor: “He doesn’t seem to really understand what I am feeling because by now I should be ‘fine.’” How have you dealt with this? Do you have any advice for someone in a similar situation?

Doctors have been frustrating at times. I have tried to restate things in a different way and if that didn’t work I would request a different doctor. I have also seen a chiropractor that does muscle testing and she helped me a lot even though it seemed an odd way to see what could help. We found that a vitamin and mineral supplements helps me a lot.  We went through a few other supplements to get here but I felt better with each step and she was excited to see me improve. She started with a supplement that helped my liver. I would think that everyone may be a little different. She said that I improved about twice as fast as she thought I would so we were both very happy with the results. Now I have the energy to go out and take some photos.

What has it been like connecting with other PatientsLikeMe members with your condition?

It has been very helpful to see what other people try and what they feel works for them.  It has given me hope. I love the thought of all of our data helping others so they will have a faster, easier time with whatever their ailment is. If I don’t feel well I can see that someone else is doing much worse so I better be happy for what I do have.

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Crohn’s & Colitis Awareness Week: Are you #IBDAware?

Posted December 2nd, 2015 by

Image courtesy of the Crohn’s & Colitis Foundation of America

This week (12/1 through 12/7) is Crohn’s & Colitis Awareness Week. The Crohn’s & Colitis Foundation of America (CCFA) wants to know what awareness means to you, asking, “Are you #IBDAware?”

Crohns disease and ulcerative colitis, collectively known as inflammatory bowel diseases (IBD), affect 1.6 million Americans.[1] Though both are types of inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis are not one and the same. Symptoms are similar, but the areas affected in the gastrointestinal tract differ.[2] To learn more about the two conditions, the CCFA website has several resources to help make you #IBDAware.

During Crohn’s & Colitis Awareness Week, there are a number of ways you can help the CCFA and the patient community raise awareness for both conditions:

For the CCFA and the IBD community, raising awareness for Crohn’s disease and ulcerative colitis is a year-round effort. Learn how you can get involved!

Don’t forget – you can connect with more than 3,400 PatientsLikeMe members living with Crohn’s disease, and more than 1,100 PatientsLikeMe members living with ulcerative colitis.

Let’s be #IBDAware, together.

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World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD).

It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease.

There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.

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