1/23/2020 by Share Your Story

Raise Your Hand If You Have Only One Diagnosis

Multiple diagnoses (co-morbidities) compound access-issues. They eat time, increase cost, and complicate medications. Success is attainable though.


There are few of us who live with only a single disease. High blood pressure + diabetes + lower back pain… diagnoses can pile up. When you have multiple health conditions these are called “co-morbidities” and they don’t exist separate from one another. Let’s explore this with advocate, Diane Talbert.


DIABETES

“I have had diabetes for over 20 years. I only found out what diabetes was when I was 19 years-old, when my mother was diagnosed. It was 1975; a Monday; she was 37. Back then, you didn’t get pills, they started you out on insulin first. I was shown how to give her shots, practicing on an orange.

“It was the Friday, 4 days later, she went into a diabetic coma and died. Her blood sugar had risen to 900.

“I finally got around to asking my doctor if I would get diabetes. He told me that, more than likely I or one of my two siblings would get this disease. Well, we all got it. I was 40 years old when I was told I had type 2 diabetes.”

OTHER CONDITIONS COMPLICATE THINGS

“If I had Type 2 Diabetes and nothing else, it would be hard to manage, but doable. But I don’t have only T2D. I have other health issues for which I take steroids. Steroids interfere with how my cells respond to insulin. My blood glucose levels to rise because of the poor response to insulin. My doctor is always telling me to watch my weight to help manage the diabetes. I try, but the steroids make me gain weight.

“Having multiple diagnoses is called having “co-morbidities”. One disease (that needs steroids) impacts the other (that needs insulin). The conditions I have and the treatments I use for them do not exist independent of one another.”


THE CO-MORBIDITY SPECIALIST?

If you had psoriatic arthritis you would need to see a rheumatologist. With diabetes you’d need to see an endocrinologist. If you also had migraines you’d be seeing a neurologist and if you had gastroesophogeal reflux disease you’d be seeing a gastroenterologist. You could try to see an Internist to manage all of these things, but there’s no way one doctor could or would handle four complicated medical conditions like that. Drugs that treat symptoms interact with other drugs, symptoms become hard to assign to one condition, and your medical chart is as thick as War and Peace.

If you see multiple specialists for your multiple diagnoses, are all the reports and notes ending up in the same place? Is your internist or family physician able to get a realistic picture of your health? The patient with co-morbidities faces just such challenges, and more.


ONE IS ENOUGH

“There is so much I have learned in the past 20 years about diabetes. Then I was thrown for a loop when I was diagnosed with type 1 diabetes on top of my type 2 diabetes. I had to stick myself every morning; not pleasant at all, and it hurts. Never knew you could have them both at the same time.

“As a daily insulin user, my biggest dilemma was figuring out how to dispose of the needles. My local pharmacist was able to provide me with a container which, when almost full, I can ship back to them. The box is pre-stamped for the incineration center. This is very convenient and safe, but only some of the work I have to do to manage one of my diagnoses.

“I also had to get a glucose meter machine. My doctor writes me a prescription for testing supplies. I’m fortunate that most of these items are covered by my insurance[1]. I just need to come up with the co-pay.”

[1] In a recent survey done by Patients Rising on the Digestive Tract Paralysis community, we learned that while ¾ of patients had insurance coverage for medical supplies (not including durable medical equipment) their out of pocket costs were still over $160/month. For those without medical supplies coverage, monthly costs were just over $430/month.

FOUR CO-MORBIDITIES = WAY TOO MUCH

“I have several health issues, so I see a different doctor for all of them. My diagnoses include type 1 diabetes, type 2 diabetes, psoriasis and psoriatic arthritis, all of which are considered autoimmune diseases. I have adapted my lifestyle over the years to make taking my medications and insulin-injection every day, but because of my different health issues, I must take extra precautions for my health. Just for my diabetes I must:

  • Take my medication on time and monitor blood sugar closely
  • Manage my condition as prescribed by my doctor
  • I had to quit smoking (that was 20 years ago)
  • Eat right and maintain a healthy weight
  • Control my blood pressure and high cholesterol (wait, those are diagnoses #5 and #6!)
  • See my diabetes doctor every 3-months for close monitoring
  • Get my eyes checked regularly
  • I get my flu, pneumonia and hepatitis B vaccine
  • Go to the dentist at least twice a year
  • Monitor foot health carefully
  • Take an aspirin daily
  • Get plenty of sleep
  • Minimize stress

I’m not going to list all the things I have to do for psoriasis and psoriatic arthritis too because the article would get too long, you’d get bored, and I’d get depressed.”

TRAVELING WITH CO-MORBIDITIES

“I travel a lot for my advocacy work. Since I have started taking insulin, I have had to learn how to travel with it.

“Tip: always keep your medications with you and bring extra supplies. You never know when something like a flight delay or bad weather might come up.

“Tip: Bring extra sanitizer.  Most planes and public restrooms are not clean and you never know when you have to stick yourself.

“But traveling with meds and with symptoms in mind takes a lot of planning. Much moreso for multiple conditions. There’s plenty of ways things could go wrong. The planning is worth it.”

BUT YOU CAN DO THIS

“It’s hard enough having one chronic illness, but when you have several, the challenges multiply. My advice? Find self-acceptance. People won’t understand the complex things you live with. They will blame you for not taking care of yourself. But what is going on in your body is no fault of our own. You have to accept what you have to live with; if you don’t, no one else will.

“I have been blessed to have a career that allows me to work from home. I try to get plenty of sleep and above all, stay positive. Diabetes care is within my control. If you’re willing to do your part, diabetes won’t stand in the way of an active, healthy life.

“I do have co-morbidities with no cures; but I will never give up the fight.  I have a strong support system, such as Patients Rising and other patient support groups. I help others who are facing what I have had to face. It gives me purpose. I think it will give you purpose too.”


Diane TalbertDiane Talbert is a blogger, patient advocate and speaker for psoriasis and psoriatic arthritis. She has been an advocate for this disease for over a decade now. Diane has run support groups in the Maryland, DC and Virginia area, is a volunteer for several organizations and vows to help find a cure for psoriasis and psoriatic arthritis and stop the stigma associated with it. She loves being a wife, mother and grandmother.


From the Editor:

If you have a situation where having co-morbidities has made access to care considerably harder for you, we’d like to help you tell your story. Reach out to me at jsliney@patientsrising.org and we’ll chat, or you can Submit Your Story here.


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