45 posts tagged “diabetes”

Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

What has been your greatest obstacle living with your conditions, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

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Member JoeSixPack shares his experience with diabetes

Posted January 3rd, 2017 by

Say hello to Peter (JoeSixPack), a father of three and member of the diabetes community. He was first diagnosed with type 2 diabetes in 1998 when he was 34 years old. In a recent interview, he told us about his life-long struggle with his weight, managing treatment, and how he found the motivation to lose weight and quit smoking.

Check out what he had to say about life with diabetic neuropathy and coming to terms with the realization that he’s not invincible.

Peter before and after his weightloss

Tell us a little bit about who you are. What was life like before your diagnosis? How has life changed since your diagnosis?

I am a 62-year-old male that was married to the same lady for 40 years prior to her death in September 2013.  When I married my wife I weighed in at 335 pounds.  I was an executive with a financial company for the previous 12 years and eventually Peripheral Neuropathy had gotten so bad it finally put me off work in January 2015.  I was diagnosed Type 2 Diabetic in August of 1988 and struggled with my blood sugar levels for most of my adult life.  Like most 34-year-old men, I regarded myself invincible so prior to my diagnosis. I had taken life for granted and believed that I could continue along on a path to self-destruction until I took ill for about a year. No one seemed to be able to pinpoint exactly what the problem was.

When the diabetes chose to completely reveal itself it was in the way of uncontrollable thirst, numerous bathroom trips through the night and I was unable to get enough sleep through the night in order to properly function at work the next day. I was prescribed a drug for the time called Glyburide. It was because of the success of this drug that I went right back to my old habits of poor diet, lack of exercise and I was rapidly becoming a workaholic in a very high stress occupation.

After about 4 years on the drug and gaining another 15 pounds my illness broke through again and I was referred to an Endocrinologist for further direction. He changed up my Glyburide to a new drug called Metformin, sent me off to a Dietician. I was no stranger to dieting as I had been a fat guy my entire life. I joined Weight Watchers and promptly lost 75 pounds but by the time I met my wife I had reached a new high of 335 pounds. I knew I needed to lose some weight in order to stay active with the now 3 young kids in our life so I signed on to the Liquid Protein Diet. From August 1 that year until Nov 30 I was able to shed 130 pounds. It didn’t take me long to return to old habits and within 2 years I had regained the 130 pounds and was now tipping the scales around 360 pounds.

I was never really concerned about the diabetes and I went days where I would take my meds and other days I would not never realizing the damage that my obesity was doing.  I ate with reckless abandon, smoked 3 packs of cigarettes a day, and still I was taking my medication only when I was not feeling well and not as prescribed by my doctor. The more weight I put on the more meds I would be prescribed.  I went to see my family doctor and told him I was tired of taking pills.  He told me to go away and lose 60 pounds before he would even discuss a med change with me.  I left his office determined to do 2 things that year 1. Lose weight; and 2. Quit smoking.

So on July 31, 2000 I stopped cold turkey on the cigarettes changed up my diet and began to walk every day.  First day I went out my front door and I said to myself anyone can walk around the block. A block turned into 2 then 10 then a mile then 5+ miles daily.  The weight began falling off at a rapid pace and I felt so good I took myself of all my meds. I kept walking hoping my blood pressure would eventually respond. I was now down 108 pounds but found a lot of times I would have my walk cut short because of shortness of breath. As I lost more weight I was unable to complete any of my training. In November 2002 went under the knife for a triple bypass!  From 2002 until 2006 I worked out like a mad fool.

In 2006 I was promoted to the Regional Manager of the company I worked for and began ignoring my health in favor of my job.  I stopped going to the gym and stopped all forms of exercise and once again became a workaholic. I stayed around 330 pounds from 2007 until 2015 but I knew that the diabetes had taken a toll on my feet and hands as my feet were constantly burning.

I went in for a proper diagnosis and was told I had advanced Peripheral Neuropathy and was prescribed Lyrica to try and combat the nightly pain I was now feeling.  Seems the Lyrica was okay for the pain in my feet (100 mg 3 X’s daily) but now I began to notice the neuropathy in my hands and my doctor referred to this as focal neuropathy. In July of 2013 I noticed a tiny crack on the heel of my left foot.  This rapidly turned into a diabetic foot ulcer and I looked to the PatientsLikeMe forums to see how to go about healing this.

How would you describe living with diabetic neuropathy to someone who’s never heard of it?

Living with diabetic neuropathy is somewhat perplexing in the fact when it first shows up it comes as a small tingle in the foot and toes.  As it progresses it started to resemble gout but the more I treated my feet for gout the worse the feet became.  Eventually I made an appointment with a Diabetic Foot Nurse and she was able to detect peripheral neuropathy in both large toes and both small toes and I was sent to report this to my endocrinologist.  Slowly as the neuropathy progressed the tingling in the feet began to get worse and even more so at night when I was laying in a prone position.  Now that I have had the disease for almost 5 years I have nights the tingling and pain go as high as above the knees and it has also moved into my hands.

It has also caused the muscle mass in my hands to deteriorate and it has become very noticeable as my hands are looking like those of an 80-year-old.  My doctor increased my dose at bedtime to 150 mg of Lyrica and 3 Oxycocet along with .05 to 1 mg of Clonazepam as needed for sleep.  This prescription has been working to date but somewhere along the line I have developed a loud ringing in my left ear that seems to get louder as the drugs wear off in my system. Eventually the lack of the ability to get a good night’s sleep put me off work and I have been unable to work for the past 2 years as the disease consumes your life.  Things you may have taken for granted you are no longer able to do alone any longer.  You cannot put on your own shoes nor tie them up, cannot button up your shirt or zip your coat.  Very hard to check the temperature of water so you need assistance with the shower or bath (very easy to burn yourself). A lot of daily chores you used to do you can no longer do.  And because this is a disease of the central nervous system, I have no idea what the disease is doing on the inside of me.

In the forums, you talk about the importance of good nutrition and diet. How has this helped you manage your diabetes?

Recently I have taken on a LCHF Program Lifestyle change (Low Carbs High Fat) and in the past 10 months I have lost 111 pounds following this lifestyle and it has allowed me to get off all of my Diabetes medication (20 Units 2 x’s a day of Levemir, 3,000 mg of Metformin daily, 240 mg of Diamicron Gliclazide daily and 100 mg of Januvia daily). Unfortunately, I have been unable to shake the effects and symptoms of the Neuropathy but I have my fingers crossed that I may have stopped it in its tracks.  If that is the case I may have just added a few more years to the end of my life.

You’re super active in the forums – what’s it been like connecting with others on PLM? What does it mean to you to donate your data?

I was so excited when I found the website PLM as I was finally able to connect with other people that were either suffering for the same issue. It gave me hope that someone may have found out something about the diseases I have that would maybe help me live a better life living with both Type 2 Diabetes and Peripheral Neuropathy.  One thing I never did through all this is give up. I always believed the more like-minds discussed their common issues, the better the chance someone somewhere might just stumble across something that actually works.

I feel that the LCHF Program has done wonders for me and had I found this information out about 10 years sooner I believe I would never had met the disease called Peripheral Neuropathy.  So I try to stay as active as possible on the site providing information that people might otherwise not be able to find on their own.

I currently volunteer for the Canadian Diabetes Diabetic Foot Program and they will not even allow me to tell fellow Diabetics how I lost my weight and how it has helped me. They won’t allow me to even discuss my hands in the program presentation.  They feel that since my LCHF program is such a fringe program it is not likely to work for anyone else the way it has worked for me and I am sorry but I do not agree with them. Effective Nov 18, 2017 I will be resigning from that program as I feel modern medicine does not care if we get better or not. Doctors have little concern for us being able to stop a disease like Diabetes or Neuropathy and especially using a High Fat Diet.  If I can turn just one person with Diabetes onto this way of eating and it stops their Diabetes and never develops into a secondary disease such as Peripheral Neuropathy, I will have done wonders to help my fellow PLM participants.

 

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