The Connection: Diabetes and Rheumatoid Arthritis – Part 3 of 3

Banner_Diabetes_Arthritis

Laddie:  Please welcome guest-blogger Rick Phillips who has written a
3-part series about Diabetes and Rheumatoid Arthritis. To learn more
about Rick, please check out my recent post that introduces him to
the readers of Test Guess and Go.

*

Rick Phillips:  RA – Diabetes and Autoimmunity

Rick_Square HeadAs I move to wrap up this series, I am reminded that I am often accused of writing an epistle when a sentence will do the trick.  I cannot help it.  I am trained as a bureaucrat, so I tend to spin in place a lot with my writing.  That is a bad habit I am working to break.  If you have stuck with me up until now, I hope you have found the effort you expended a wise investment.

I really do owe a debt of gratitude to Laddie for publishing my work.  I am reminded that I am a guest here and the first rule of being a guest is to not overstay your welcome.  I hope I have not overstayed my welcome on Laddie’s site.  I am exceedingly grateful for her hospitality.  Rheumatoid Arthritis (RA) is something that interests me a great deal of course.

After diagnosis, I wondered:  “Are RA and Type 1 diabetes connected?  And if so, how?”  They are.  While I had never heard of such a connection before I was diagnosed with RA, the connection, the how, and why these diseases are connected really started to interest me.

First and foremost, RA is an autoimmune disease as is Type 1 diabetes.  In both diseases, it is thought that the autoimmune system mistakes helpful body tissue as being undesirable and in essence revs its engine to attack the body systems it finds offensive.

My dad loved war movies, so I tend to think of it like a war movie.  I imagine the autoimmune system (the General) hanging out in headquarters.  Suddenly, it notices some movement on the map; someone has mistakenly labeled that movement as the enemy.  The labeling is wrong, but the autoimmune system does what it does: it attacks.  It sends in tanks, missiles, aircraft carriers-you name it, to battle this new movement.  The trouble is the movement is not harmful or the enemy; it is the good guys.

In my case, my autoimmune system first attacked the insulin-making cells in my pancreas.  Later, it loaded up and started a war with my joints.  Still later, my autoimmune system got tired of hanging around with no new wars to fight, so I was diagnosed with a third autoimmune disease called Ankylosing Spondylitis (AS).  AS is like RA of the spine.  AS has pretty much the same disease elements as RA, this time just targeting the spinal area.  It hurts as well and I had never heard of it before the doctor said I had it.  Go figure, another prize in the “autoimmunity-gone-wild” lottery.

So, how are these diseases connected?  According to the Arthritis Foundation, there is an overlap between the diseases.  This is how they explain that overlap:

Research shows a genetic connection between rheumatoid arthritis and type 1 diabetes. In recent years, researchers have identified a gene called PTPN22 that strongly correlates with the incidence of type 1 diabetes as well as rheumatoid arthritis, juvenile idiopathic arthritis and other autoimmune diseases.  (Learn About Arthritis, 2014)

After one gets beyond that, finding the evidence for a link tends to get less pronounced.  A very large study in 2010 found the following evidence for a connection between arthritis and diabetes: “Among U.S. adults with diagnosed DM, nearly half also have diagnosed arthritis.”  At first blush, that seems like pretty compelling information for a direct link between the two disease conditions.  However, once one digs a little deeper, it is discovered that this link has more to do with Type 2 diabetes than Type 1.  More than half of the incidence of people with Diabetes Mellitus and arthritis were also judged to have arthritis-attributable activity limitation. While not saying it directly, it does suggest more of a relationship between Type 2 and arthritis than Type 1.

Of course, no matter how you cut it, RA and Type 1 are both autoimmune diseases.  Although I searched for several days and could not find a direct link, I still don’t think anyone will be surprised if one day a common thread between the 80+ autoimmune diseases isn’t found and shown.

There is one other very significant fact that needs highlighting.  Almost 3 in 4 people with RA are female (“Learn About Arthritis,” 2014).  No one knows why women are more susceptible to RA than men.  Whatever the reason, RA is a tough disease. The combination of RA and Type 1 diabetes is even tougher to deal with.  I hope this series has been informative.  If you would like to discuss it further, look me up at my blog at TuDiabetes or send me an email at Rphil2@Yahoo.com.

Special thank-you for help in preparing this series goes to: Erin Mattingly, for administrative support, Carol Eustice, Ask.com arthritis expert, and of course Laddie for allowing me to publish such a long blog series. (Laddie, I hope I did not run anyone off!)

The Connection: Diabetes and Rheumatoid Arthritis – Part 2 of 3

Banner_Diabetes_Arthritis

Laddie:  Please welcome guest-blogger Rick Phillips who has written a
3-part series about Diabetes and Rheumatoid Arthritis. To learn more
about Rick, please check out my recent post that introduces him to
the readers of Test Guess and Go.
*

Rick Phillips:  My Personal Journey with RA

Rick_Square HeadThank you once again to Laddie for me inviting me to blog at her site and especially for encouraging me to blog about arthritis.  While I traditionally blog at TuDiabetes and have been a type 1 diabetic for 40+ years now, I also have Rheumatoid Arthritis (RA).  The connection between the two diseases is always fascinating to me.

I decided to stretch Laddie’s invitation to a three-part blog about RA.  In the first blog, I told of how I was diagnosed; today, I write of my personal path with RA; and the third blog will be a discussion of how RA and diabetes are related.  While sequentially written, each one stands apart and can be read independent of the others.  I hope you find meaning in my experience.  If you wish, I am available to answer questions.  I am not an expert, but I have had an interesting life with the two diseases.

The advancement of drugs in the treatment of Rheumatoid Arthritis (RA) is nothing less than amazing.  In an informative article about Rheumatoid Arthritis at medicinenet.com, RA is defined as:

“An autoimmune disease that causes chronic inflammation of the joints. Autoimmune arthritis diseases are illnesses that occur when the body’s tissues are mistakenly attacked by their own immune system.”

The first line of drug defense is methotrexate.  It is inexpensive, readily available, and a proven agent; although, with some downsides.  One downside is that it does not always work.  In fact, in most cases today, doctors want to move patients with RA to the more aggressive biologic drugs.  You know these by the brand names: Enbrel, Remicade, Humira, and the secondary drug Orencia.  Each is administered via injection or infusion.  I prefer infusion, but most people prefer the injectable varieties.  These drugs, along with a host of others, target proteins linked to the TNF alpha gene (tumor necrosis factor alpha).  This gene belongs to a superfamily of genes defined as “a protein currently consisting of 19 ligands and 29 receptors in humans”  (“TNF Superfamily,” 2014).  This superfamily is thought to be involved in many types of diseases, including cancer (“TNF Superfamily,” 2014).  In fact, the class of drugs used to treat RA mostly came out of cancer research.  To read more about the TNF Superfamily, click here.

The doctor told me on the very first day that if I wished to continue to function, I must go to a biologic drug as soon as humanly possible.  That meant using methotrexate or a similar drug (Arava) alone for six months, then testing and going to a biologic immediately.  Those first six months were pretty tough.  My disease continued to worsen, and by the end of it I was barely walking.  So, my first “big gun drug” (as my doctor called it) was Remicade.  I used this for almost 5 years and it was amazing.  It absolutely stopped the progression of RA in its tracks.  That is, until it didn’t.  Over time, the frequency of doses began to get closer, and then it simply stopped working.  When it did, I moved on to a succession of five biologic drugs; four of which did not work, or worked only slightly, until they stopped altogether.

This is not uncommon for RA patients.  In fact, if you talk to RA patients who have had the disease for some time, many have been on every “big gun drug” out there.  I have been on many, but not all.

After 12 years of using TNF inhibitors, I had a scary incident where I developed something termed ”lupus-like syndrome” which caused me to be hospitalized.  Per the medical understanding at that time, I was forced to give up use of TNF inhibitors.  For those of you who would like the disease function explained, there is a nice technical paper here.   (Although I would skip it, if I were you.)

With the development of the lupus-like syndrome, I was forced to go on a different, potentially toxic, form of treatment using the drug Rituxan.  At the time, it was my last stop on the available drug merry-go-round.  The problem with Rituxan in particular is that during the clinical trials, people died.  So, the first time one takes it is very scary.  Doctors cannot predict who may be affected or when, but death is rare so it is unlikely the lights will simply go out.  With my experience with other drug side effects, it was a troubling decision to use the drug.  I put off the decision for about four months before I agreed.  During that time, my condition worsened and I was barely moving; sometimes during this time frame I returned to using a cane for walking.  I was once again a mess.

Today, my disease is managed with infusions every four months.  With constant appointments with the rheumatologist and a variety of secondary drugs, I am able to semi-manage RA.  I say semi-manage because I have had to stop working, I have periodic flares, and of course stamina is a big concern.  The truth is that no one really manages aggressive RA.  Instead, it is a series of highs and lows.  Some days you feel well, other days you feel terrible.  But with the assistance of biologic drugs, it is possible to live, albeit some days on a tight rope.  I have had no serious side effects using Rituxan, and while I am on the maximum allowable dose, the doctor and I are thinking we might have a chance to stretch the infusion intervals a bit in the future.  The drug is intended to be used on a six month cycle, with four months being the shortest cycle.  I am on a four month cycle at this moment, and doing well.

I also take an unreasonable number of drugs, in addition to the Rituxian.  Now, to be fair, most of these are not related to RA.  But, many are.  To give you an idea of my drug regimen, I have included two pictures that demonstrate the number of medications I use: one for morning meds and one for evening meds.  Yes, I know it is a lot.

Morning medications:

Morning Meds

 

 

 

 

 

 

 

Evening Medications:

Evening Meds

 

 

 

 

 

 

 

The Connection: Diabetes and Rheumatoid Arthritis – Part 1 of 3

Banner_Diabetes_Arthritis

Laddie:  Please welcome guest-blogger Rick Phillips who has written a
3-part series about Diabetes and Rheumatoid Arthritis. To learn more
about Rick, please check out my recent post that introduces him to
the readers of Test Guess and Go.

Rick Phillips: My RA Diagnosis Story

Rick_Square HeadFirst, thank you to Laddie for me inviting me to blog at her site, and especially encouraging me to blog about a subject that interests me greatly: arthritis. While I traditionally blog at TuDiabetes and have been a type 1 diabetic for 40+ years now, I also have Rheumatoid Arthritis (RA). The connection between the two diseases is always fascinating to me.

I decided to stretch Laddie’s invitation to a three-part blog about RA. In the first blog, I tell of how I was diagnosed; in the second, I will write of my personal path with RA; and the third blog will be a discussion of how RA and diabetes are related. While sequentially written, each one stands apart and can be read independently of the others. I hope you find meaning in my experience.  If you wish, I am available to answer questions. I am not an expert, but I have had an interesting life with the two diseases.

While I have told my diabetic diagnosis story a number of times, I seldom get to tell my RA diagnosis story. I was officially diagnosed with RA in early spring of 2000. Looking back on things, I likely had it longer. (My best guess, around 1997.) But, like most things that sneak up on you, I had no idea that most people didn’t feel that bad. The turning point came in two parts. The first, was in the late summer of 1999 when my oldest son bought a 1999 Pontiac Firebird. It was truly a beautiful car.  My wife nicknamed it The Beast for its thunderous engine, high end stereo, and awesome looks. He brought the car home; proud, as he should have been, and he offered rides. I could not go because I simply could not get in. The car was too low to the ground and I was much too stiff to bend. Not riding in his new car, of which he was legitimately very proud, hurt my son’s feelings and I went inside and had a good cry.

The second involved my youngest son when I took him for a campus visit at the one college I love: Indiana University Bloomington. While he and all of the other parents and prospective students toured the campus that late winter day, I stayed behind, sipping coffee in the lounge.  I was the only parent to do so. There was no way I could walk and keep pace, let alone walk the distance required for the tour. Now mind you, it was a lovely day at a campus that I have always admired and I was with my son who was enthusiastic to be there. If ever a day was made for a parent to enjoy a brief walking tour, this was it. When I could not go, I told him and myself that I was letting him go alone because it was a part of growing up. In truth, it was the final step in recognition of the fact that something brutally wrong was going on in my body.

Later when asked what tipped the balance, I would often say it was the ride to and from campus. On both the way there and back, I had to get out of the car to stretch because my legs hurt so much. It was a 60 mile, one hour drive each way. Today, post treatment, I routinely make this drive without stopping or issue. It seems silly now that I stopped twice that particular day.

With that second affront to one of my sons, I knew I had to do something. So when I saw my endocrinologist, we discussed it and he ordered some tests. In short order, the hidden truth was revealed. My indicators for RA were simply off the charts and immediate action was required.

Within a few days, I saw a rheumatologist and the cycle started. My insurance company required that the first course of medication involve the exclusive use of Methotrexate.  Almost immediately, my mouth broke out in sores and I went to a newer drug, Arava.  This one also caused mouth sores, but was effective at a lower dose.

With the use of these drugs, I started monthly blood monitoring, something I was not as compliant with as I should have been. By the end of the sixth month, my doctor received insurance approval to move to biologic drugs.

Being diagnosed with RA was an awful punch to the gut. I had learned to live with Type 1 diabetes, despite being very angry about having the disease. With use of insulin therapy, I was able to somewhat make peace with the disease.

With the addition of RA, life certainly got more complicated. First, it meant extensive blood work. Instead of going every three months for an A1C, I was now going one to three times per month to check blood levels for RA factor and various blood chemicals.  It was doubly important to keep up with the blood work because too much of the immune suppressants could ultimately be deadly.

Just as important, I also faced a new reality with work. I loved the job I was doing at the time.  Men are often self-defined by their job and I was no different. But with the diagnosis of RA, I somehow knew that life would change. At 42, it was truly the beginning of the end of my work life and what I defined as Me. Yes, I was scared, but thank goodness I have a wonderful partner in Sheryl who helped me keep the train on the tracks for a few years.

Introducing Rick Phillips

Laddie_Head SquareRick Phillips might be one of the busiest people in the Diabetes Online Community (DOC). The easiest place to find him is at TuDiabetes. He hangs out there under the name of “Rick the Blogabetic” and is an active blogger, forum participant, and member of the Care Team.

For those of you who are not active in the TuDiabetes community, the Care Team is composed of a group of dedicated members who moderate the forums, welcome newcomers to the site, post birthday greetings, look out for spammers, and provide support as needed to members of the community. It’s a big job and a compliment to be asked to be part of the team. After a few weeks of being part of the Care Team, Rick wrote a blogpost summarizing his thoughts on the “challenge to serve”. Here is an excerpt:

I truly love this site [TuDiabetes] and over the last few weeks I come to love it even more than today. Thank you so much for asking. It means a lot to me and if the reader of this post is ever asked and they accept the challenge, they will find a new way to serve you fellow diabetics and believe me it is so worthwhile.

Rick decided in late April 2013 that he needed to do something that was mega-impactful and he pledged to write 200 blogposts in one calendar year. Thus was created Rick Rick_2Rthe Blogabetic. Rick is somewhat like me in that he never uses one word when ten will do. Therefore his 200 posts represent a tremendous amount of writing and research on a vast array of subjects. You can read about anything from “Dogs and Endocrinologists” to the whimsical story of “Chick Duck” and from “What is -30-” to “When are We Not Diabetic?”  To learn more about Rick, you should read his 199th post in which he described what he learned as a result of his blogging marathon. BTW Rick the Blogabetic is still going strong although maybe not at the pace of 200 posts per year.

In recent weeks I have run into Rick at TuDiabetes both in the forums and on his blog. I have read his guest-post at Karen Graffeo’s blog Bitter Sweet™ where he compares diabetes education to spring rains. I have seen him (@LawrPhil) in the thick of the controlled mayhem of #DSMA TwitterChat on Wednesday evenings. Facebook? Yes, he’s there too. So if you don’t already know Rick, chances are you will soon!

Rick and I have a lot in common. He has had Type 1 for 40 years compared to my 38 years. He is somewhat younger than I am, but we have been married approximately the same length of time and our two sons are the same age. Even our grandchildren are close in age. We both live with multiple autoimmune conditions. Here things diverge. Rick lives with severe Rheumatoid Arthritis (RA) that has had a huge impact on his life.  He indicates that his arthritis is much more difficult to live with than diabetes and that the severity of his arthritis required him to abandon the career he loved in education/business/public affairs. Although I also have arthritis, mine is more easily managed and has not yet required me to make significant changes to my lifestyle.

Next week Rick will be guest-blogging at Test Guess and Go about the connection between Type 1 diabetes and Rheumatoid Arthritis (RA). Because many of us with one autoimmune condition have clusters of autoimmune issues, this 3-part series should be an interesting and educational read. Rick will tell his personal story in Part 1, talk about his treatment regimen in Part 2, and conclude with a somewhat scientific discussion of the links between diabetes and RA in Part 3.

Thank-you to Rick for taking time to share his story with us. I encourage those of you reading this blogpost to take time to get to know Rick in the many social media platforms of the DOC. You will quickly learn that he is a Diabetes Advocate to the core and that he is a man dedicated to serving others. Those of us with diabetes are lucky to have him on our team.

I am Blessed

Laddie_Head SquareToday was a reminder that I live a very blessed life.

This morning my new Dexcom G4 system arrived by FedEx. I currently have good insurance and all it took was one phone call on Monday to have this fabulous medical device show up on my front porch today.  Proving that I don’t live in a rut and am easily amused, I am somewhat excited that my new receiver is blue and replaces my out-of-warranty hot pink receiver.  Life is too short not to grab every opportunity to be happy.

Dexcom Blue Excitement

This afternoon the UPS guy delivered a big box containing 3 months of infusion sets, reservoirs, and test strips.  These supplies were ordered through the Edgepark website on Sunday.  Many people totally bad-mouth Edgepark, but once I learned to ignore the wacky prices they quote for “Retail”, I have had excellent service from them.  (I hope that I have not jinxed myself.)  I was told by a rep in the CGM/Pump department at Edgepark that my good insurance is one reason that things have gone so smoothly for me.  I also give credit to my endocrinologist whose multi-doctor practice is very organized and responds quickly to requests for prescriptions and medical necessity forms.  Nothing was too exciting in this order except that it includes one box of Contact Detach metal sets that I have never tried.  Some Type 1’s at TuDiabetes swear that they are the best, so I figured they were worth a try.  Earlier this summer I tried out Cleos and Insets and neither worked well enough to lure me away from manually inserted Comfort Shorts.

For those of us who participated in the Spare a Rose campaign, my ease in getting needed diabetes supplies is in stark contrast to the difficulties that many children/adults in developing nations have getting insulin to keep them alive.  I won’t need to buy insulin until September.  When I do, all it will take is a few clicks on the computer and a drive to my local Walgreens to replenish my deli drawer with insulin (my refrigerator does not have a butter compartment!).

I wish that I didn’t have diabetes.  But I am blessed because I have supplies on the shelf, a pump in my left pocket, a CGM in my right pocket, and plenty of insulin in the refrigerator.  Not everyone is so lucky.

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Thanks to diabetesherosquad.com for permission to use their Dexcom graphic.

Why Do I Blog?

Laddie_Head SquareLast week I had my annual eye exam and started to write about it.  Fortunately the appointment went well and as I started to write, I started to wonder why anyone else would have any interest in the appointment.  Sure, you all like me and want to know I’m doing well.  But a whole blogpost worth of doing well?  Maybe not that. There is a certain self-absorption that is present in most blogs and mine is no exception.  At the same time I am uncomfortable with too much personal trivia and you won’t see me posting blood glucose numbers on Facebook or Twitter.  (The one exception is “Twinsies” when my Dexcom G4 and Freestyle meter have matching numbers.)

This got me thinking about now that I have blogged for over a year, why do I blog?  Have I achieved any of the aims that I professed in my first post?  What have I gained from it?  Have I added anything to the Diabetes Online Community (DOC)?  Am I enjoying myself and what do I think about the future of Test Guess and Go?

Why do I blog?  The main reason I blog is that I enjoy writing and creating graphics, some silly and others more serious.  It’s something to do.  I’m at a stage in life where I no longer work and am not satisfied with having something like golf be the center of my life.  I am certainly not an artist or a great writer, but I like having a creative outlet in my life.  Sometimes I think that it is pitiful that I spend so much time writing about diabetes, but there is no doubt that it is something I know a lot about and spend a lot of time dealing with.

Is it to become rich?  That’s a joke, although there are a handful of diabetes bloggers who have used their blogs as stepping stones into careers as diabetes advocates and social media consultants.  Although their lives are purposeful and rewarding, I don’t think that anyone has yet financed a mansion on Diabetes Easy Street through books and consulting fees.  I’m not being paid to blog and except for an occasional book or CGM case, I have received no concrete rewards.  I have not been approached with bribes of cash or chocolate-covered donuts to sway my opinions on any issue.

Little Fish Big PondIs it to become famous?  I admit that one of my aims in starting a blog was to increase my presence in the Diabetes Online Community (DOC). I hoped to become a little fish in what is a big pond for those of us with diabetes and a little pond when it comes to the whole wide world.  The measure of my new-found fame is that now when I Google myself, I find images and links.  Previously I did not.  To put this search engine fame into perspective, my dog shows up in “Abby the Black Lab” Google searches and prominently sports her flowered hat and DSMA crown in the image section.

Is it for diabetes advocacy?  Advocacy is a hot topic in the DOC and it easily becomes a burdensome topic.  One of my favorite discussions of this burden is a January 2014 blogpost by Scott from Rolling in the D.  If I summarize his thoughts correctly, he was writing (and maybe whining) about the expectation that just because he was a diabetes blogger that he was required to become an Advocate with a capital-A.  At the same time he understands that through his sharing his diabetes story, he has probably turned into an advocate.  That’s true for me also.  I refuse to feel guilty that my main goal in blogging is not and never has been to be an advocate.  I am a good follower/supporter and feel proud of my participation in DOC projects such as Spare a Rose.  I have also initiated some projects such as my Type 1/Type Conversations with Kate Cornell of Sweet Success: My Life with Type 2 Diabetes.  But I don’t want to be weighed down by expectations of what I should be doing just because I write a blog.  Nor do I want to feel bad if I feel that I’m not living up to what others in the DOC are doing.

Do I pay attention to stats?  You betcha.  Do they make sense?  Sometimes, but not always.  Some posts that I work really hard on get fewer views than others which are flippantly churned out when I just want something to publish.  Stats provide encouragement because they show that I have gained new readers in the last year.  It’s hard work to write a blog and readership is a compliment.  One of my biggest achievements is that I have finally written some posts with more views than those of Abby the Black Lab.

Where do I fit into the DOC?  I am one of hundreds of bloggers in the DOC.  I am old enough to be the mother of most Type 1 bloggers and I am happy that you have accepted me as a friend.  I believe that my co-bloggers and I are good writers and I am proud of what has been published on Test Guess and Go.  Some of our posts have been highly praised and commented on.  At the same time I am careful not to become jealous of  more-established bloggers who get tons of views and repeatedly get invited to represent us at conferences.  One reason is that they have earned their place and secondly, I don’t want the responsibility that goes along with being “big-time”.  I will continue to be a happy little fish and work hard to support all of the other fish, big and small, in the DOC.

Am I fulfilling any of my goals?  Yes, I think that Test Guess and Go has become known as a blog where people of about my age have a place to talk about how diabetes has affected our lives.  Sue from New York has described both her experiences as a Type 1 approaching Medicare age and her life as a parent of a Type 1.  Sue from Pennsylvania has written extensively about her Type 1 husband and advocated for Medicare to begin providing coverage for CGMS.  I’ve shared stories of diabetes then and now and have not been shy about expressing my opinions on any issue.

What has been the main benefit of being a blogger?  With no doubt, the answer is friendship and relationships.  My blog contributors, Sue from NY and Sue from PA have become good friends who understand and walk-the-walk of Type 1 diabetes.  Building on my Twitter and Facebook relationships, I’ve continued to meet and get to know many people living with all types of diabetes in the USA and around the world.  No one wants diabetes in their life, but the people I’ve met in the DOC are incredible!

What is the future of Test Guess and Go?  It is here today and will be here tomorrow.  Beyond that the future is an unknown.  I would like to hear from more seniors who are approaching Medicare age or are already there.  If you are interested in writing a guest-post or becoming a regular contributor, please contact me.  I hope that our readership will continue to grow.  I hope that I can continue to find things to write about.  I hope that my Windows desktop computer continues to work so that I still have access to my beloved Adobe CS5 design programs.  As always, I hope that diabetes will be cured and that the theme of this blog can be changed to Golf, Hiking, and Dog-walking for Old Ladies.

Conversations: Two Spouses of Type 1 Diabetics

Conversations Banner_T1Spouse

Sue B_Head SquareSue from New York and I first came into contact with each other through the American Diabetes Association message board. My husband had gone on Medicare and discovered that his Continuous Glucose Monitor (CGM) would not be covered by Medicare, and I needed to get in contact with someone who might answer some questions as to what I needed to do to fight the guideline that Medicare had that prevented the coverage of the CGM. Sue from New York posted an answer to my CGM inquiry even though she wasn’t on Medicare as yet. I think that we may have chatted very briefly on the forum before I asked her for her email address so that we could communicate privately. After emailing for a month back and forth, I asked her for her phone number. I thought it would be easier to speak on the phone. She sent me her phone number and we started talking on the phone a few times a week and really became good friends. At some point, she suggested that I contact Laddie about doing some blogs on Laddie’s Test Guess and Go site.

Sue and her husband decided to take a road trip last week. They started off in Maryland, then went to West Virginia, and on the final leg of their journey came to Harrisburg, Pennsylvania, where I live and spent a few days with my husband Marc and me. We had a great time meeting in person and being able to speak to each other face-to-face. Sue and I thought it would be interesting for me to have a conversation with her husband Steve as spouses of diabetics. She, in turn, had a conversation with my husband Marc. The following is a result of my conversation with Steve.

Sue from PA: What was your reaction when Sue was diagnosed as a diabetic?

SteveS_Head SquareSteve: I thought that since we had gotten through it with our son Steve, who was diagnosed as Type 1 at age 4, that hers wouldn’t be as bad because she was diagnosed as a Type 2. I was worried, but I knew I could handle it.

Steve: How was it when Marc was diagnosed for you, because you hadn’t been through it?

Sue from PA: Initially when Marc came home from the doctor and told me he had diabetes, I was pretty shocked. Then I started to educate myself about diabetes and I realized that I had a misconception of what it involved food-wise. I always thought that you couldn’t have sugar. I soon learned that sugar was the least of my worries. It was actually carbohydrates that were the real villains since they turn into sugar.

Sue from PA: What do you do to help Sue with her diabetes management?

Steve: I keep track of her monitoring, make sure that she is taking her medications, help her with her placement of her pods (OmniPod is the pump that she uses to deliver her insulin), help her when she is hypoglycemic and make sure she gets something to eat or drink to bring her blood sugar back to normal. At times I have taken her place in watching the grandchildren and have taken them places where she would have taken them normally, and at times I have driven her to the store when she has needed to get something and didn’t feel as though she could drive.

Steve: How long has Marc had his diabetes, and how have you taken care of him?

Sue from PA: Marc has had his diabetes for approximately 19 years. I am very fortunate in that he can do his everyday care by himself. He is totally responsible for his insulin pump and when he had a CGM he was totally responsible for changing his sensors. Basically, I manage his food by counting his carbs for each meal that I prepare. I am responsible for saving his life when he gets hypoglycemic, and I am constantly reminding him that he owes me big time since I’ve had to save him more times that I can count of my two hands. I have learned to give him the glucagon when he blacks out and I have leaned to recognize the symptoms when he starts to go low.

Steve: Sue has also told me that she doesn’t know what she would have done without me and how grateful she is that I have been able to help her through this.

SuePA_SteveNYSue from PA: Emotionally, what’s it been like to live as the spouse of a Type 1 diabetic?

Steve: At times it has been very stressful. At times I am truly emotional over it. Sometimes I have been scared but I made a commitment in my wedding vows, in sickness and in health to love her always and I would never leave her because of her health.

Steve: On that same topic, how has it been for you?

Sue from PA: (Heavy sigh). It’s been a challenge. I don’t think there is ever a day when I don’t worry about him. One of the biggest issues for us is the lack of his having a CGM due to being on Medicare and them not covering it. When my children became independent and were able to be out on their own at night, as most mothers do, I never truly fell into a deep sleep until they were home and the house was locked up. Now I never fall into a deep sleep even though my husband is right beside me. I am always aware that in the snap of a finger he can go into a hypoglycemic low, at which point I might have to jump out of bed, and I literally mean jump, to make sure to get juice or a soft drink into him to prevent him from going unconscious. During those times when it’s happening so fast that he does become unconscious, I need to give him the glucagon. Even though I’ve done it numerous times, my hands still shake and my heart beats almost out of my chest. I’m just always worried when I am not with him. I can understand how you feel, Steve, because I feel the same way. I will always honor my wedding vows. But you have to make light of it sometimes to be able to live with the situation. I can truly say that seeing someone you love having a hypoglycemic low is something you never forget. They are drenched in sweat, their eyes are unfocused and they have no idea of what is happening. It’s frightening.

Sue from PA: Steve, do you have anything else you want to add to this conversation?

Steve: In less than a year Sue will turn 65 and will go on Medicare. I hope and pray that when her insurance no longer covers her, Medicare will be there to cover her with her diabetic supplies and necessary devices that she needs, i.e. her CGM.

Sue from PA: Diabetes had been a true education for me. Because of Medicare’s lack of coverage of the CGM, I have become an advocate. I have done things I would have never thought I could do. I blog, I did a podcast, I wrote an article for my local newspaper, and recently I have become involved in S-2689, the Medicare CGM Access Act that was introduced into the Senate on July 30, 2014 by Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). It addresses the growing concern that people with Type 1 diabetes who are over the age of 65 cannot obtain coverage for the critical and potentially life-saving Continuous Glucose Monitor (CGM) through Medicare, even if they used these technologies successfully prior to becoming Medicare eligible. A few weeks ago I sat in on a telephone conference with representatives from Dexcom, Medtronic, J & J and Animas and also a representative from the endocrinologists association, among others. I was one of just a few to be invited to sit in on this telephone conference.

Sue from PA: I thank Steve for having this conversation with me. Most of the people I come into contact with are the diabetics. I’ve not had much contact with the spouses and it’s good to be able to speak about what it’s like for us, the caretakers. I hope that we can have more conversations in the future.

In closing, I would like to ask everyone reading this who has not yet signed the JDRF Petition or clicked on the link that asks their Senators to support S-2689 to please do so. It’s so important to the many diabetics on Medicare who cannot get a CGM because it isn’t covered by Medicare. So many are on fixed incomes and can’t afford the cost of the CGM and the sensors.

Click here to email your U.S. Senators to urge them to co-sponsor legislation that would ensure Medicare covers CGM
Click here to sign a petition to urge Medicare to act now to cover CGM

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