13 posts tagged “member interview”

Leaning on loved ones—An interview with lung cancer member Clare

Posted February 23rd, 2016 by

When Clare (Riverdale) was diagnosed with non small-cell lung cancer, 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.

We recently connected with Clare, who emphasized “the value of a loving mate” in her experience with lung cancer.

Tell us a little bit about yourself.

I am 73 years old, grew up on a farm in Alberta. My father smoked a pipe and used to joke about turning the air blue. No one else in the family got cancer. I smoked starting at age 20 while studying for exams, trying to stay awake, then continued as people who smoked got a coffee break and those who didn’t smoke really didn’t get a break. I continued to smoke less than a half a pack a day till age 28, then thanks to Nicorette gum stopped easily, as did my husband. We are very physically active. I rode my bike several miles to my job — weather- permitting — as we have great bike lanes and didn’t live too far from the center of the city. We continued to ride daily after retirement for exercise and belong to the European Waltz Time Society for bi-monthly dancing.

You were diagnosed with lung cancer after going to the emergency room for severe back pain—what went through your head when you received the news?

I was glad to hear that my pain was not a heart attack and that my cancer had been detected in an early stage.

In your profile, you mention that your husband is living with prostate cancer. How has it been supporting each other while managing your own health?

I was so sick during my husband’s treatment with radiation that I did not support him much but he seemed to sail through. The staff at radiation called him the entertainer and the coffee shop he attended daily called him by name and had his coffee ready as soon as he walked in the door. Only once did he have to delay because he had to have a bowel movement and a full bladder each day prior to treatment. He still has prostate pain and takes pain meds for that but his PSA says the treatments were successful and every 3 months the bladder checks say he doesn’t have bladder cancer. All I can say is that without him I would be willing to die now. But he says he can’t stand the thought of being alone, and I worry about him for that reason.

We noticed you regularly track your quality of life and symptoms on PatientsLikeMe. Have you seen benefits from tracking?  

I find it difficult to put in new things like a change in dosage of a medication, or if I want to mention my right breast is getting larger and nipple is painful. I have used it a few times to remember when an event happened.

What’s one thing you’ve learned in your journey with lung cancer that you’d like others to know?

Something I learned in my lung cancer journey is the value of a loving mate. Going through this alone, I would stay in bed and in misery but because of my mate, I eat properly, I exercise and he gets things done when I couldn’t manage. Maybe I would but because I don’t have to, things are better. Yesterday I spent the night worrying about pain in my tongue and wondering if a jagged filling was causing the sore. He called the dentist and I was taken right in and reminded about one of the side effects of Giotrif is mouth sores and to rinse with salt water. Alone I would have continued to stew instead of starting right away on treatment. That is why an advocate is so necessary.

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“Hope makes us strong.” – An interview with ALS caregiver Cathy

Posted February 12th, 2016 by

Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope.

We took time to connect with her recently and this is what we learned… 

Tell us a bit about your life. How has it changed in the year since your husband’s diagnosis of ALS?

Living in suburban Nashville, my husband and I were enjoying his retirement. A former journalist and Corporate Communications Executive, we were busy keeping tabs on our family. One son living in our area, one son finishing college in Michigan and a daughter in Chicago. Before the diagnosis, we loved to take road trips. Before the diagnosis my husband loved to cook, he loved sitting on the patio, talking, drinking a beer and he loved to talk. His stories were endless. Being married to him for many years, I would, at times, roll my eyes. I had heard those stories many times before. But I loved them, nonetheless. Now, in the year since the diagnosis, we have all the kids back in Nashville. After learning their Dad was living with ALS, the kids packed their bags and moved home. We don’t take road trips anymore. His head drop makes travel uncomfortable. I am now learning to cook, hubby doesn’t eat anymore. We sit on the patio, but there is no beer. He still tells his stories, a bit, the text to speech “representative” tells them for him. I don’t roll my eyes anymore when I hear them. Now, I close my eyes and listen.

You’re new to being a caregiver. What is the most challenging thing about it?

Because I am a caregiver for my husband, the biggest challenge for me is knowing when to be caregiver and when to be a wife. As a caregiver, I am nurse, doctor, advocate, responsible for sussing out what is medically necessary and educating myself to gain an understanding of what is to come. As a caregiver, I have to administer tough love. As a wife, I just want to give him comfort and smother him in love. I want to magically cure him and have him back as he was. Since the caregiver understands that is not going to happen, I am slowly learning to merge the two roles.

What part of it do you enjoy or find rewarding?

I enjoy being an advocate. I truly and deeply believe a change is near for the ALS community. We must keep the momentum going. What is rewarding are the simple pleasures. A thank you from my husband for a back scratch, a hug from my kids … just because. A movie night with my friends or an encouraging word from a PLM friend. ALS has made me realize that the little moments of life are the rewards that matter (though a nice bottle of wine would be rewarding in itself).

You mention that your best friend has been a caregiver for both of her parents. Did that friendship in any way prepare you for your new role? If so, how?

My best friend has taught me love, patience, humor and perseverance. Watching her be a caregiver for her father with COPD (he passed away last May) and her mother with Alzheimer’s inspires me daily. She has shown me the wisdom of daily affirmations and how to find a quiet peace for my troubled soul. She is my hero. I don’t know what I would be without her.

What advice would you give to someone who has just become a caregiver for an ALS patient? Do you have any best practices yet to share?

My best advice would be to educate yourself. Read, learn, then learn some more. Do not rely on the medical community. Though your doctor may be brilliant, day-to-day management of this disease will be left to you. There are no easy answers. How ALS “behaves” for my husband is not how ALS will behave for you.  My best practices are maintaining humor. Keep your “patient” laughing as best you can. Many times my silly antics (disco lunchtime – complete with dance) have kept my husband from the depths of depression. Remind them that they are still a vital part of your life and your world will always and forever need them.

You often use the word “hope” in your posts. Like “Hope needs another cup of coffee,” “Hope loves tradition,” “Hope has more shopping.” Is this kind of like a personal mantra for you? 

Hope is, indeed, my mantra. I hold hope in high regard and expect those around my husband to subscribe to it. Without hope, we have nothing to hold on to. Hope makes us strong and keeps us stronger. Hope is the essence of life and our best defense. Hope knows ALS will be defeated. Our time has come.

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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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“I try my best to make the most of each new day”– An interview with ALS member Brian

Posted January 22nd, 2016 by

Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012.

In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how — with a sense of humor. Here’s what he had to say …

1. Tell us a little about yourself.

I’m your average nerd who refuses to grow old, despite being 41 years old now. Diagnosed so many years ago and not having close family ties was rather trying on me. I’ve had my share of nursing home nightmares and some caregivers that made me feel like family.

Some of kids I’ve known and helped raise over the years now have children of their own. It seems like the world changes but I do not. I try my best to make the most of each new day, and it feels the proper way to accept life with ALS.

2. In your profile you write, “Many trials and tribulations of ALS have pushed me to limits that I have never thought of before.” Can you describe some of these experiences, and how your life has changed since your diagnosis? 

I have gone through some situations that doctors never thought I’d survive but the worst of it all was accepting the fact that ALS would be part of my future. Not really knowing just what was going to happen or expect. It’s that uncertainty that can drive anyone absolutely mad. Having once the illusion of absolute control and then having that revealed to me that control is an illusion was a very hard thing to accept.

There was a moment when I had my first PEG placed that the doctors (prefessionals as I call them) that I had informed them of feeling a “pop” sensation when PT wanted to have me sit up on the side of my hospital bed. Later that evening a licensed nurse had started a feeding session without checking patency. Hours later I had already had the beginning symptoms of Acute Peritonitis, all from the formula being introduced and me feeling a burning sensation.

The following afternoon I was put into a CT scanner and shuttled up for emergency exploratory surgery. The surgeons never thought I would make it after a pulse of over 180 and my body in writhing pain. After several months I had recovered but had to have my tube surgically placed along with relocation of my stomach to prevent a recurrence of such a catastrophic disaster.

3. Your sense of humor shines through in many of your posts. What advice do you have for others on keeping a positive outlook?

In my past I have had major anger issues and learned (on my own) how to channel and let go of such negative energy. I used to hop in my car and just go for a drive to unwind. Being no longer an option, the best way I have of releasing anger, fear, and such discomfort has been through humor or making light of some of the worst situations I’ve been in (in a tasteful manner of course).

Such an example was during the long hospital stay I had was the wonderful view out my window of a cemetery. I asked my doctor “If I’m not going to make it, at least it’s a short trip next door don’t you think?” It was kind of a morbid view when recovering in your second month of madness. Best to make the most of it since it was all I had at the time.

4. What has your experience been like with PatientsLikeMe? What keeps you coming back to the site?

I discovered PatientsLikeMe when trying to find an ALS support group of which this town has nothing of the sort. So an idea came up. Google has all the answers. (Siri on my phone came up with more odd results … let’s just say not G -rated support groups.)

Having no close family really makes ALS quite a challenge and I wanted to meet others in some way to compare notes, tips, tricks, and the occasional rant once in a while as ALS is such a trial on me to face alone. Having no car, nobody to help comfort my pain and frustrations. People here listen and I was surprised just how many lives I touched and look forward to reading my next update.

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“It is definitely a daily challenge” – An interview with PTS member Holden

Posted January 11th, 2016 by

Holden Montgomery (holdenmonty), an administration support technician for the Air Force Space Command, was deployed to Afghanistan in 2010 and later diagnosed with PTS, depression, and anxiety. He joined PatientslikeMe in March 2015, where he’s been connecting with other vets and sharing how he copes with his conditions.

We recently caught up with Holden, and here’s what he had to say…

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

So I must admit that when I started with this journey after my deployment and home break-in/vandalism I didn’t really have any hobbies or passions. Since my only focus while I was deployed was to live until the next day, that is the mindset that I came back with and still struggle with, but I will touch on that later.

So the biggest thing that saved me when I was struggling the first several months before my first son was born was photography. I have a Nikon D5100 DSLR and I would go exploring in nature and take photos of whatever I thought looked awesome or beautiful. I have thought about doing that again here in Colorado Springs but when you wake up to Pikes Peak every day and it’s always there you tend to take the beauty that is around you for granted. I must admit though just about every sunrise and sunset is breathtakingly beautiful.

But lately, after I attended my first Soldier Ride with the Wounded Warrior Project towards the end of June of 2015, I really got into bicycling and that has become my main hobby and passion. It’s also kind of amazing how you change because I have started to notice that one of my passions is wellness. I know I need to work on my own personal wellness but I have started to be more passionate about wellness in general.

In your profile, you mention dealing with anxiety and depression in addition to PTS. What are the challenges of managing three conditions?

So even though I was initially diagnosed with PTS in 2011 and anxiety in 2014 it wasn’t until I spent a week at a behavioral health clinic in the middle of June of 2015 that I was diagnosed with all three. But being diagnosed with all three gave me some peace of mind. Well as much as you can with mental health conditions.

For me it seems like the cause of my PTS was several things that combined together. Between multiple different things from my deployment and then a couple months after I got back my home I was living in at the time was broken into twice in the same week. It seems to be very similar with PTS from what I have seen that people that have PTS tend to have anxiety and/or depression as well. It seems like what led to my diagnoses of PTS was kind of a snowball effect of different things, and it seems like PTS tends to be a combination of different conditions. For me it’s anxiety, and depression. That is what people tend to see of my PTS. My therapist that I have here in Colorado Springs told me that she sees me as having anxiety with no other symptoms which was rather aggravating because I knew there was other stuff. It is definitely a daily challenge.

I heard an analogy one time and I really liked it and I hope it doesn’t offend somebody but if it does I’m sorry but it has helped me with my PTS and stuff. PTS is like cancer, you treat it and work to get ride of it and once it is gone there is a lot of relief and you try to move on with your life the best that you can but in all actuality it seems like there is no 100% cure and that it is always in remission. There can be any number of different things that can happen and it comes back. Sometimes it comes back but is very minor and is easily managed and sometimes it seems like it comes back with a vengeance and tries to kill you.

What has your experience been like tracking your moods, quality of life, and PTS symptoms on PatientsLikeMe?

I have really enjoyed tracking my mood and quality of life when I make sure to update it regularly. It may sound kind of weird but when I put how I’m feeling that day or in the moment with a small description of what is going on then somehow I’m not able to lie, or make it sound not as bad. I’m blunt and sometimes brutally honest. Which is really nice and refreshing since I tend to lie to myself about how I’m feeling.

I know there is a way that you can print out how you have been doing to bring to your therapist but I haven’t actually done that yet. I guess I am still trying to tell myself and the world that everything is ok and that there is nothing going on with me until I can’t stuff my emotions anymore and I explode. I guess I’m still afraid of that stereotype that society has drilled into me that if you have mental health issues then you can’t be trusted around “normal” people.

 You mentioned journaling as a way of handling your anxiety. Do you have any other coping strategies for people with PTS, depression, or anxiety?

I really enjoy journaling. It’s kind of like another way of the whole mood tracking and quality of life tracking. I can’t really lie when I’m writing it down.

I did run into a little bit of a big question. I filled up one small notebook that I used. It’s small enough that it can fit in my back pocket so I keep it always with me. But then there is the thought about what if somebody gets a hold of it and uses what I wrote against me or reads it, what would I do? So I thought about burning it or shredding it so nobody would ever be able to read it. I talked about it with my therapist and I wrote a small disclaimer in the front cover that basically states whatever is in here was how I felt at the time and I have addressed how I was feeling have resolved it to the best of my ability.

But anyway bicycling has been my biggest go-to besides journaling. I have created a coping card that is small enough to fit in my pocket which would help if I actually kept it on me and looked at it constantly. But some of the things on it are talking with trusted individuals which unfortunately seems to be growing smaller and smaller. But anyway walking, deep breathing/quiet time, looking up inspiring quotes, reading my Bible, listening to music, taking pictures of nature, take a shower, use my stress ball, and getting to my safe place, and thinking, which might seem weird but tends to be in a tree. I don’t climb the tree but I find a pine tree that is full enough that if I walk far enough into it nobody will be able to tell that I’m there. I guess you could say hiding from the world and thinking.

What has it been like connecting with other vets on PatientsLikeMe? 

I have really enjoyed connecting with other vets on PatientsLikeMe. But I must admit more importantly than connecting with other vets is connecting with other individuals with PTS/anxiety/depression because even though everybody has their own story, you can end up in a darker place if you start comparing stories.

For instance when I was deployed I wasn’t allowed off base because I was an IT guy and kept the network for my squadron running and computers running. But with an accumulation of events while deployed and after my deployment I have been diagnosed with PTS but one of my best friends that I met here through the Wounded Warrior Project has a spinal cord injury, traumatic brain injury, and PTS from being blown up when he was out on a convoy in Afghanistan. He is worse off than me and I used to tell myself that he is the kind of person that deserves the help that I receive because he has seen and been through some much worse stuff than I have.

I don’t have a spinal cord injury, or a traumatic brain injury. But we help each other, I share with him some thoughts that I have that I must admit I tend to be ashamed of because they aren’t the kind of thoughts that I would normally have had before everything and more times than not depending on the situation he has had the same thoughts or if he was in my situation would have the same thought, and we challenge it together. Just sharing how you feel with another individual that might be feeling the same way or something similar no matter how different your stories are is a really powerful thing. So really the biggest thing is just the fact that you are connecting with somebody that has a similar diagnosis. Really, diagnosis doesn’t even really matter— just somebody feeling similar to you. Somebody that you can relate with.

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#CervicalHealthMonth: Member Laurie opens up about living with cervical cancer

Posted January 8th, 2016 by

Every year, more than 12,000 women in the U.S. are diagnosed with cervical cancer. And every January, the National Cervical Cancer Coalition (NCCC) kicks off Cervical Health Awareness Month. In honor of #CervicalHealthMonth, we asked Laurie (lroz57), who joined PatientsLikeMe in 2012, to tell her story.

Laurie was given a 50/50 chance of survival when she was diagnosed back in 2003, and endured a difficult treatment experience. Here’s how she describes it:

I was diagnosed on 12/18/2003 with Stage 3B cervical cancer. The tumor was as big as a tennis ball, and in the vaginal wall. I had 28 ext. radiations, 2 int. radiations and 3 low-dose chemo treatments. Talk about burns! Now I have more radiation damage than I thought possible. But as I tell people, ‘I’m alive!’”

Throughout it all, Laurie has committed to staying positive and active — bicycling, exercising at the YMCA and volunteering for the National Patient Advocate Foundation.

As for her experience on PatientsLikeMe, she shares, “I love connecting with others in my position. You never know what you might learn.”

If you’re living with cervical cancer, the NCCC has lots of ways to get involved, including a #CervicalHealthMonth twitter chat on January 12. And if you want to reach out to Laurie, or connect to the other 214 PatientsLikeMe members with this condition, strike up a conversation in the forum!

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“Do not give up, find a reason to keep going.” – An interview with ALS member Lee

Posted January 4th, 2016 by

Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive attitude with others.

We recently had the chance to catch up with him. Here’s what we learned…

1. Tell us a little about your life. You’re retired – what are you most passionate and interested about right now?

I have been fighting this disease for 27 years, it has been a rough road, but I am so grateful for the time I have been given. I worked up till 10 years ago, then I retired because I could not do my job anymore. My passion in life right now is to enjoy my family, and to live long enough to see a cure. I like watching TV, playing video games, do as much Tai Chi as I can.

2. You say in your profile, “If you think you’re going to die, you will so I keep going.” You’ve maintained a very positive attitude. What helps you do this?

I have always felt that a patient must try to keep as positive as possible, otherwise depression sets in and that is not good mentally or physically for the body. It is hard to do that with what we go through but once you get over the shock and fear of the diagnosis, you will start trying everything to slow down the progression and to find ways to cope. I use humor to keep going, even though the pain is horrible I refuse to give up.

3. You also mention your grandchildren. What’s your favorite thing about being a grandpa?

I have 8 grandchildren ranging from 2-14: 4 girls, 4 boys, my oldest grandson had stage 4 brain cancer a couple years ago went through 56 weeks of chemo, he is now in remission. I figured if he could beat it, I can beat mine. They are the world to me and the reason I keep fighting, I want to live long enough for them all to be old enough to remember their papa. I have an 11-year-old granddaughter who has been able to flush my feeding tube since she was 7, she is my mini nurse, I call her little bit. I am blessed to have them all living in a 20-mile radius of me so I see them frequently. I think my favorite thing about being a papa is making them laugh and watching them play and grow.

4. You’re quite active in the forum. What does it mean to you to be able to connect with other PALS?

I really enjoy PatientsLikeMe, I welcome every new patient that joins, I try to help and answer any questions and questions they may have, and I ask them questions. I have talked to patients all over the world, every patient is different, we have lost a lot of the ones who were on this site for a long time and it is always sad to see another one pass, I do not know most personally but feel they are part of my family because we have been in contact for so long.

5. What would your advice be for someone newly diagnosed?

My advice for newly diagnosed patients would be just because the doctor gives us 2-5 years to live does not mean we have to die in that time frame. I have known patients that get the diagnoses of ALS then they go home and give up, those patients do not last long. Stay as active as possible, exercise but not so much it hurts or tires you out, keep your weight up, seems to help slow down the progression, if you’re going to get a feeding tube do it before you need it and before you get to weak in your breathing, it will be an easier operation if you are healthier. I have found that if you start on a bipap breathing machine if only a hour a day before you really need it, it will give your lungs a bit of a rest, and could prolong your life. Get into a stem trial or drug trial if possible, and most important do not give up, find a reason to keep going, set goals for yourself, when you reach those goals make more, we all have to have a reason to keep going. I take lots of vitamins, do they work I do not know for sure but I am still here after 27 years so it is not hurting me, one of the main ones is CoQ10, and coconut oil I hear is very good for patients.

 

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“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

Posted January 1st, 2016 by

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March.

We had the chance to connect with her recently, and here’s what we learned …

1. Tell us about your life. What are your hobbies and interests? How do you most enjoy spending your time?

I was born 71 years ago in a town named Escondido, in Ca. My mother had been a Wave in the Navy in Washington, D.C. where she met my father, a career Marine. It was war time and he was transferred to Camp Pendleton Marine base in Oceanside, where he was immediately sent overseas to fight. I was an only child with no family living close by so my Mother and I were very close. My father went up through the ranks and was up for Brigadier General, and was honored to take over training the 7th Marines at Camp Pendleton in 1962. Two weeks later he died of a heart attack and my mother and I were forced to change our lives as well as our homes and lifestyle. She moved us to a town ten miles from where I was born. I went to college at PALOMAR Jr. College where I majored in boys. I married my husband, George, in August of 1963, and became a mother June 1964. You know the plan to wait a few years just didn’t work for us. You remember I said I majored in boys. Seems I didn’t know how to count and messed up the birth control pills ‍‍. I became a stay at home mom and our son was born four years later. Amazing how quickly you learn to count when needed. As my children grew, I became restless and went back to school. I discovered I wanted to become a nurse and take care of others so that was what I did. The kids were growing up and we were all going to school. I graduated with my R.N. in 1979 and became an oncology nurse specialist. That progressed to orthopedic nurse, home care nurse, then a MDS coordinator. I retired in 1996 after my son became ill with testicular cancer. He healed, my father-in-law died, I had ovarian cancer and one Thanksgiving night after everyone went home I suffered a heart attack at 53. During the next year I had seven stents that failed, had a triple bypass and did really well until last year. Then I caught the lingering cold everyone was catching, but mine wouldn’t go away. On my birthday I finally went to the doctor after four weeks. I was placed on ABT’s inhalers, and steroids. One week later I returned unable to breathe. It was at that time I was told they heard crackles and the X-ray showed IPF scarring. I had purchased a cruise to Hawaii for our Christmas present, but was unable to go. I was on oxygen and not feeling better. The 13th of Jan. I was in the hospital with pneumonia. My life of playing bingo, gaming at the casino’s and cruising was over as I knew it. I was still able to read, enjoy my backyard, and the glorious sunsets and the multitude of hummingbirds I feed. My life was changed but not over. I was able to enjoy the little things that made me happy. I was lucky to have my husband of 52 years with me, my daughter and my ten-year-old grandson as well. They are all my daily blessings and sources of enjoyment. Don’t get me wrong, it is not always sunny, but we are managing, one hour at a time. I have my moments full of tears, but, also joy in the little things. I try to deal with what cards I have been dealt with grace. Some days are better than others.

2. You’re very supportive to others in the forum. In a recent post, you said to another member, “We care, we know, we too are frightened by our diagnosis. Don’t feel alone, that no one cares. We may not be there physically to hold you in our arms, but you have many arms around you that DO CARE.” How have you, in turn, felt supported on the site?

I try to visit the site on a daily basis and interact with my family here. If they don’t post for a while I fret and worry. They fill my need to help others to help myself. This place is my safe place. I truly believe we are family and here to help each other. I am free to tell those who understand how miserable it is on some days. They understand and perk me up with their prayers and responses. I love that we are free to share everything or nothing. This is another part of home!

3. As a former RN, how do you think your past experience informs the advice you give to others?

Most often I have to censor myself because of my prejudices toward the medical profession today. I feel I know enough to give good information and resources if needed. I am not afraid to tell it like it is. We are not here for the fairytale version of what is happening to us. We are here for truth and knowledge that what we feel is normal or not. I listen to everyone and what they say to learn for myself. I hope they can feel the love that is offered even though there is such little hope at this time. I think the main thing I give is knowledge and comfort. At least I hope so.

4. Tell us about your diagnosis. What did you do/feel in the moments following it?

Like I said, it was very sudden when it finally showed up. A few years before before I was symptomatic, it was mentioned and I recall ignoring it, saying we would worry about it when we needed to. I was breathing and living a normal life and was truly not interested in it since it was incurable and not affecting me at the time. I think I knew last year when I was diagnosed my easy time was gone. I never wondered why me, never got mad. Why not me! I think what has affected me most is I promised my grandson to take him to see the glaciers in Alaska. I cannot afford the medical supplies that includes any longer and I hate that I didn’t take him sooner. I would love to book a cruise right now, but can’t afford to lose all that money if I get worse. I investigated it earlier last month and renting the portable concentrators that go high enough and the extra batteries and the scooter make it seem so much like a dream. I think the day I realized my dream to see my grandson’s face when he saw Glacier Bay and the calving was over was the day I felt the worst. I felt my dream die and even now it brings tears to my eyes and pain to my heart. My advice to my friends and family here is do what you need to do while you still can. Don’t let this disease kill your dreams if you can still do them. DO THEM IF YOU STILL CAN.

5. How would you best describe the feeling of living with IPF to someone who doesn’t have it?

I find it can be overwhelming depending on the day and what you want to get done. I am no longer independent and able to plan ahead. I need help with shopping because the cart won’t hold my oxygen and the weeks worth of groceries. I spend several days visiting different doctors every week between me and my husband, rather than going out to do what I want. I look good, feel pretty good for all that is wrong with me, I just can’t breath good. I tend to tire more easily than before and sometimes it is hard for people to understand. Like I say, I look well just sitting there with the cannula and oxygen tank or 50′ of tubing I walk around the house with. I have a love hate relationship with the oxygen. I am grateful for it making my like livable, but hate the way it looks, the constant noise and the dry nose and mouth.

Most people don’t know anything about IPF. I TELL THEM IT IS A TERMINAL DISEASE WHERE YOUR LUNGS QUIT EXPANDING AND COMPRESSING. They have two new medicines that may help prolong life with a better quality. Nothing out there to my knowledge will cure it. A lung transplant is a possibility for some but not me. I have already had my chest cracked when I had my bypass. I am too old and too fluffy to get one. So I live each day the best I can.

6. What advice would you give to a newly diagnosed person?

TALK, JOIN, DISCOVER ALL YOU CAN. THIS IS YOUR LIFE, KEEP UP WITH NEW INFORMATION. MOST OF ALL LOVE YOURSELF AND BE HAPPY YOU CAN CHANGE THINGS TO MAKE THEM BETTER with your attitude! You may not like it, but make the MOST of it.

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“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Posted December 28th, 2015 by

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community.

We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned …

1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy?

I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, and even worked at a greenhouse for 3 years.

2. Can you describe how life has changed for you since your diagnosis in 2008? 

I was in the process of becoming a teacher while working and raising a family when in 2006 my voice sounded raspy and different. I was diagnosed at Duke as was my sister 2 years before. Our father had the same MND, probable ALS. Most genetic types of ALS account for only about 10% of all cases and ours is slow progressing Bulbar type. So ours is pretty rare.

3. What inspires you to keep a positive attitude?

I think my faith helps me and the fact that most people with ALS don’t have a slow progressing form. I feel as if I have been given more time to advocate and spread awareness, so that’s what I do. I spend a lot of time in different forums, chat rooms, ALS Facebook groups and of course PatientsLikeMe trying to give and get advice.  In the case of PatientsLikeMe, I can also get data I can use to make more informed decisions regarding my healthcare and wellbeing.

4. You were recently an InMotion participant in Richmond’s Walk to Defeat ALS in October. Tell us a little about this event.

This yearly event raises money that goes to help local PALS (Person’s With ALS), like me with all sorts of stuff like equipment, support, technology, respite care and more. ALS can cost hundreds of thousands a year in the later stages and having access to equipment free of charge is one less worry we face. My local chapter has supplied me and others with a lot of equipment.

5. What has your experience been like on PatientsLikeMe? You recently posted in a forum about long-term ALS patients – what does it mean to you to be able to connect with people who are going through a similar time?

Connecting with others for support, to learn I’m not alone, and the data tracking features are very important to me. As I said before, I belong to many ALS support groups and forums but none can compare to PatientsLikeMe. It’s such a novel concept where users can set parameters and track data while getting support and answers. I have a complete history going back to my diagnosis to show any doctor, of all sorts of things relating specifically to ALS.

6. If you could give one piece of advice to a newly diagnosed person, what would that advice be?

Advice to newbies, prepare for the progressive nature of this disease by being proactive in your healthcare. Take advantage of your local ALS Chapter for equipment and support and reach out to others who have been where you are now. It’s amazing how beneficial it is to communicate with others going through similar circumstances.

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“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor

Posted October 14th, 2015 by

Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life with PTS and TBI. Here’s what we learned….

Some people talk about PTSD ‘triggers.’  Do you know your triggers, or do symptoms happen unexpectedly?

I know some of my triggers, like trash on the side of the road. In Afghanistan they would put IEDs under piles of trash to hide them on the side of the road. So I know if I see that today, my heart starts to race, I get hyper-vigilant, and I start to think something’s about to happen that I need to avoid.

You mentioned that you feel a lot of pressure to be who you were before the war.  How are you different since returning home? 

I used to be the fun guy. All my friends would come to me and we’d go out and go shooting and joke around. It’s hard now because a lot of my friends don’t really understand. They don’t really know what I’ve gone through and what I’ve seen because it’s hard to talk about. The friends that I have told don’t really believe it.

What has it been like connecting with other vets on PatientsLikeMe?  

There are things you’ve done or seen that you will never forget. I don’t want anyone to ever imagine the things I see when I close my eyes at night. I wouldn’t wish that on anyone. It takes a lot for me to come out and talk about it. It’s been easier to connect with people online instead of in person. If I hadn’t found the site, I honestly don’t think I’d be here right now.

I haven’t been on this site for very long but man, I’m glad I found it. Since telling my story in a forum called “PTSD, my story and a cry for help” a couple months ago and reading all of your stories, I’m happy to say that I’ve made tremendous progress within myself. I’ve only had maybe 5 “freak outs” since joining. Whereas I was having 5 a day before. Half of the battle is knowing that you’re not alone in this, we’ve all done and seen different things but in reality, we’re all the same.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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“I know that it will pass eventually” – PatientsLikeMe member Jennifer shares about her PTSD

Posted June 6th, 2014 by

June is National Posttraumatic Stress Disorder (PTSD) Awareness Month, and recently, Jennifer (aka sortaborderline) spoke about her personal experiences with the neurological condition. She talked all about learning to roll with her triggers, leaning on her family and PatientsLikeMe members for support, and recognizing the relationship between her fibromyalgia, myalgic encephalomyelitis (ME/Chronic Fatigue Syndrome) and PTSD. Check out her full interview below.

 

What went through your mind when you were first diagnosed with PTSD?

I already thought that PTSD was the problem, but it was such a relief to know that I wasn’t “losing my mind.” I have a legitimate disorder, not something that I can wish away or just “try harder” to ignore or push through. I actually felt empowered. Now I knew for sure what was going on, so I could work on treating it. Putting a name to the disorder really helped take a lot of the fear out of it for me. When I am triggered, I know why and I know that it will pass eventually. Just that little bit of information gives me so much more power over it as opposed to before when I didn’t know what was happening.

What have you learned about living with PTSD in the years following your diagnosis?

For the most part, I have learned to roll with it. Not that it is easy or that learning that hasn’t been difficult. I have learned that it is okay to share with my support system when I am triggered and ask for help getting myself back to center. I have learned that it is okay to share how I am feeling with my husband. That was a big step for me. Not because he hasn’t always been supportive of me, he has. Because of my particular issues, it is difficult for me to trust people with my unfiltered self. I’ve learned that I can with him, and it has helped strengthen my marriage immeasurably. People on the Mental Health board at PatientsLikeMe have been incredibly helpful and supportive of me and I know that no matter how bad it gets, I can pour it out on the page in my journal and be supported. For one thing, it can be cathartic to get it all out on the page. For another, it helps me to get feedback. Sometimes all it takes is someone reminding you of the coping skills I have to help me get my bearings.

In addition to PTSD, you’re also living with fibromyalgia and ME/CFS – do you notice a relationship between your conditions? How does one impact the other?

My diagnoses are essentially intertwined. One can trigger the other. If someone is having a long or particularly painful ME/CFS flare, that can make a neuro-typical person anxious. For a person with an anxiety disorder, that is amplified. The pain from the ME/CFS is exhausting. All of those pain signals bombard your brain for days on end, and your brain gets tired. It makes it difficult to think, resulting in the bane of the CFS/ME sufferers’ existence, the dreaded fibro-fog. It is very difficult and emotionally draining, not to mention the effect it has on your sleep. It is difficult to use learned coping skills when you’re exhausted.

On the flip side, anyone with an anxiety disorder can tell you that there are physical symptoms when you’re triggered. With ME/CFS, that is amplified as well and can trigger a flare. Which can amplify the anxiety trigger. It can be viciously cyclical. Sometimes, I just have to rest. There is nothing else to be done. Rest, a good diet, and hydration are the best thing to break it sometimes. If anything, I have learned to pay attention to subtle changes in my body or mood so that I can try to mitigate flares and triggers whenever I can.

You mention a “normal” mask on your PatientsLikeMe profile – can you share what means for you?

I am a mother of two children, I am a wife, a daughter, an aunt, and a granddaughter. I am trying to build a career and lead a full life. People depend on me. I have to “fake it until I make it” a lot of the time. It is difficult. It is nice to be able to take off that mask and be frank about what I am dealing with in the safety of the PatientsLikeMe Mental Health forum. I truly believe the help and camaraderie that I have found there has helped me to maintain a stability that I didn’t have before I found it. I feel much less alone in my struggle, even when in mid-episode, and as much as my “in person” support system is helpful, sometimes you just need to talk to someone who has been where you are. It is indispensable.

How have the connections you’ve made with others in the PatientsLikeMe community helped you to take that mask off?

I am not afraid of my symptoms anymore. I am not afraid to let my feelings out a bit more. I am not afraid to reach out and ask for help, nor am I afraid to offer help to others. Even a little note of support can help pull someone back on the path they want to be on. People on the forum have done it for me so many times. Having a cheering section helps you get the strength together to keep fighting. I know that, and I offer as much support as I can to other members because it matters. I feel like I matter. Even when my symptoms are at their worst and I feel weak and small, I know that a note of support to someone else matters. Sometimes when you can’t bring yourself to matter to yourself, mattering to others can keep you going until you can.

What advice would you give to someone who has just been diagnosed with PTSD?

Don’t be afraid. Don’t let negative stigma regarding mental illness keep you from getting help. Our disorders are just as valid as physical illnesses. They need treatment in order for us to function and live our lives. Therapy was absolutely essential to getting me stabilized. It truly helped me to manage my disorders and start living again. If you don’t “click” with the first therapist, try another. When you find the right fit and do some hard work, it will make a huge difference for you.

I have found the tracking tools on PatientsLikeMe to be immensely helpful, especially in the beginning, for tracking symptoms to see if there are patterns in my triggers and symptoms, which has helped direct my therapy and coping techniques. The medication tracker has been helpful as I am one of those super fortunate folks who seem to have a proclivity toward weird side effects from medications. That way I can remember what we have tried and how it worked. Visit the forum. Check out my journal if you want, it’s public. There are folks who have just hung out and read the forum for months before joining in, and that is okay. It helps to see that others think like you and understand what you’re dealing with.

Most importantly, don’t give up. It can get better.


“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

Posted May 19th, 2014 by

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about living with IPF below.

Some PF members report having difficulty finding a diagnosis – was this the case with you? What was your experience like? 

My journey started back in 2005, when after my first chest cold that winter, I was left with severe coughing spells and shortness of breath. An earlier chest x-ray didn’t indicate any issues, so I was referred to a local community-based respirologist (what we call a pulmonologist here in Canada) who wasn’t concerned with my PFT results. I also had a complete cardiovascular workup, again with no alarming results.

Then, in 2008, I had another chest cold. Growing up in a family of smokers and being the only non-smoker, I seemed to have managed to miss having chest colds, but 2005 and 2008 were definite exceptions. Again, a normal x-ray, another visit to the respirologist and another PFT that didn’t send up any alarms [although looking back at both 2005 and 2008, I can see where there was a definite indication that I was heading towards restrictive breathing problems]. Inhalers only made the coughing worse. The respirologist said I had “sensitive lungs” – gee, doc you think?

Then, in November 2010, I was laid out with another chest cold, coughing my lungs inside out, barely able to walk 10 feet. So the new family doctor calls me. This time, the x-ray report came back that I was showing signs of interstitial lung disease (ILD). What? So onto the computer and in to see the family doctor. When the doctor suggested sending me back to the local community-based respirologist I had previously seen, I said NO BLOODY WAY!

Instead, through a friend who is a thoracic surgeon at the University Health Network (UHN) in Toronto, I got a quick appointment at the ILD Clinic at Toronto General Hospital (TGH) in January 2011. Since I hadn’t yet had a HRCT, I was sent for one and returned to the clinic in June. The initial diagnosis was probably IPF, but maybe NSIP since my HRCT didn’t show the UIP-pattern. The decision was made to treat as IPF so no harmful treatment was undertaken. A biopsy was discussed, but was considered too early for that invasive test and that instead my disease would be monitored via non-invasive tests.

My ILD/PF specialist continued to monitor me and after another exacerbation early in 2012 and the PFT showing a progression of my lung disease, we decided to send me for a VATS biopsy. The September 2012 biopsy clearly indicated the UIP-pattern of lung damage and the IPF diagnosis was confirmed.

Over the last few years, I’ve learned a great deal. I know that the road to diagnosis is often long and complex with not all the pieces of information presenting at the same time — seldom with one test or series of tests taken at one point in time. I feel I’m fortunate that first I had that very unsatisfactory experience with the local community-based respirologist and that through my husband’s work we had met and become friends with a thoracic surgeon who is on the lung transplant team at TGH.

So even though I “naturally” followed the recommended course of action to get myself to an ILD/PF expert, my path to diagnosis wasn’t instantaneous. My biopsy could have just as easily shown that I had a treatable form of PF — still not good news but a different path.

Now with a confirmed IPF diagnosis, I’ve been assessed for transplant (June 2013) and found suitable but too early. But another winter of exacerbations and my ILD/PF specialist is now talking about going on the waiting list.

Another PF member, Lori, spoke about her “new normal” – how did your diagnosis change daily life?

Yes, life with PF has certainly been a series of adjusting to the “new normal” but up until February 2013 when I started oxygen therapy, the changes were small. I had to explain to people why I broke into coughing fits while talking on the phone or in person. I had to explain to people who offered water that thank you but it didn’t help since it was just my lungs telling me to talk slower or shut up. I had to explain to people that I wasn’t contagious when coughing. I had to explain to people that the huffing and puffing were just the “new me” and that they didn’t need to feel they had to jump in — that I would ask when I needed help.

But since going on oxygen therapy with my new facial jewelry and my constant buddy, I don’t have to explain that I have a disease but some people still like to ask questions and I enjoy answering them.

Life with PF and supplemental oxygen is definitely more complicated. I started with high-flow for exertion (6 lpm) and liquid oxygen (LOX). So I can’t spontaneously take off overnight (I would have to make arrangements about a week ahead to have  equipment and supplies delivered at my destination) and I probably can’t fly. But I’m a homebody so that has affected me very little. But I can’t leave the house without considering how long I will be and how many of my LOX portables to take with me.

I still do my own driving, shopping, cooking, housework, and one or two 2-mile walks per day on the farm property — over hilly landscape — because I’m de-conditioned after this past winter. I’m currently having to use 8-10 lpm for those walks but I’m doing them. Use it or lose it!

What made you decide to get so involved in the PatientsLikeMe community and how has it helped you better understand your own PF?

Involvement with PatientsLikeMe was more of a knowledge-based decision. I believe that knowledge is power and knowing as much as I can about my disease helps me to manage the disease. For me, support is sharing what I have found and providing directions to that information for others. Then it is up to them to read the information and decide how, or if, it applies to them.

I believe in being my own medical advocate in charge of my medical team. I’ve probably had a natural propensity for that but my way of thinking in not being a traditional patient was affirmed by Dr. Devin Starlanyl, a doctor with fibromyalgia who wrote The Fibromyalgia Advocate. Fibromyalgia is a matter of living with and managing the symptoms and dealing with different medical specialties to achieve that BUT also accepting that you as the patient are central to treatment and management.

I believe that living with PF is that way as well. The doctors can only do so much. There is no single silver bullet that they can give us, no matter what type of PF, to make it all go away. We have a core set of symptoms BUT we don’t all have all the same symptoms. We have to take ownership for our disease management.

So at PatientsLikeMe, I seek to not only learn but to share what I’ve learned. If I can help one other person shorten their learning curve then perhaps I’ve helped.

On your PatientsLikeMe profile, you reported using a pulse oximeter in 2013 – how did you like it? What did it help you learn?

I found that I was having to slow down too much or struggle too much to breathe. My walking test was not yet indicating that I qualified for oxygen therapy but rather was on the cusp of requiring supplemental oxygen. I was concerned about the damage to my body.

I purchased an inexpensive pulse oximeter to check my saturation. I soon realized that being short of breath was not a reliable indicator that my oxygen saturation had dropped below 90%. Having the oximeter to give me a measure of my saturation helped me to better interpret and listen to the other biofeedback that my body was giving me.

The oximeter helped me to manage my activity so that fear didn’t turn me into a tortoise that either slowed way down or seldom moved. I got a better handle on just how much and how fast I could do things to keep active, to keep my body healthy, to exercise all the parts of my respiratory system, and yet to do it SAFELY!

Looks like you use your profile tracking charts and reports a lot on PatientsLikeMe- why do you donate so much health data, and how do you think that will change healthcare for people living with PF?

Again, my propensity. I love learning! I love sharing what I learn! I keep my own spreadsheets with my medical data but that only benefits me. I know that one of the problems for researchers is accessing a sample population large enough to make meaningful inferences from their findings. And finding a large population in a given geographical area for a rare disease is difficult. Going outside the geographical area is expensive. So hopefully the remote sharing of information will be the answer.

We are all so very different and so many of us also have other health issues on top of the PF. So who knows what comparing us will show? But throughout life I’ve been amazed at how seemingly inconsequential, seemingly totally unconnected pieces of information can come together at a later point and TURN ON the light bulb!

So why not share my health data? It really is anonymous. Unless I provide more identifying information, I’m just a name and a face but maybe with enough names and faces we can get some answers that will benefit us all.

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