Category Archives: Decisions

LivingRheum is Going Green for Lyme Disease Awareness Month

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Liime-green-ribbon

The past four years I have spent talking about how to live well with chronic disease.The mission of this blog was to talk about not only living with chronic disease, but living as well as you can with it.

Initially I thought I had RA (Rheumatoid Arthritis). I received a diagnosis in 2001 and I trusted the doctors.

I have learned a lot since then. A lot about myself, RA and Lyme disease.

In trusting the medical professionals more than myself, I spent 9 years being treated for a disease I never had. While other deadly diseases were wreaking havoc throughout my entire body. And to add insult to injury, the treatments that were supposed to help me actually made my body  the perfect host for these bacteria.

What I actually had (and still do) is Lyme disease (Borrelia Burgdorferi), Babesia and Protomyxzoa Rheumatica (AKA FL1953 or “The Fry Bug:)

That’s a mouthful for sure.

All three diseases are parasitic diseases that attack the joints, the central nervous system, the heart, eyes, lungs, stomach, intestines, liver, uterus and spleen just to name a few.

These are serious diseases that have been marginalized by the medical community for far too long. The result has been thousands of people suffering needlessly for years unable to get a correct diagnosis.

There are many reasons for the failings in the medical community most of which are discussed in the documentary Under Our Skin. I would strongly suggest that everyone, whether you are sick or not, watch this movie. It truly is an enlightening film.

So in honor of all my fellow Lyme Warriors and in memory of all those who fought so hard only to eventually succumb to this insidious disease, for Lyme disease awareness Month, LivingRheum.com is going green for the month of May. And I will try to share as much information about this and other vector-borne infectious diseases as I can.

Arthritis Friendly Prescription Bottle Covers?

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So I request the arthritis friendly covers for my prescription bottles. Sometimes I get them, sometimes I don;t. So I’ve made it a point to keep a few extras around the house in various bottle sizes just in case the pharmacy forgets.

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What To Do If You’re Not Happy With Your Rheumatologist

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What should you do if you’re not happy with your rheumatologist?

Well, there are a few things you can do. First off, I would talk to them. Sometimes it can be hard to find a new doctor, so it might be a good idea to try and resolve your issues with your current doctor. Explain the problems that you’re having and why you’re not happy. Remember that they work for you. It is their job to help you in the best way that they can. But they are human too, and may not realize how they may be making you unhappy. So give them the opportunity to be a better doctor for you and tell them what is bothering you.

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Under Our Skin: A Real Eye Opener

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Have you ever felt like the universe is trying to tell you something?

Have you ever heard the same message again and again and then finally, one day you actually listen?

There were many messages over the years that the universe was sending to me that I just didn’t hear. Maybe I was too busy to listen. Maybe I was just trying to get through the day. I don’t know why the other messages didn’t get through and this one did, but I will forever be grateful that I sat down and watched Under Our Skin.

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Hope and Chronic Illness

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I had to share this quote, because it really speaks to me.

“There is no medicine like hope”

Wow.

Doesn’t that say so much?

According to Oxford’s Dictionary, hope is defined as “grounds for believing that something good may happen” and “a feeling of trust”. I think that in order to survive any chronic illness you need to have hope. A need to believe and trust that the current situation is just temporary.

I am a realist, I have read all the statistics and studies. I am aware of the scientific opinions. I know what I am dealing with.

But that does not stop me from having hope.

Hope is important.

Without it, what is left?

Hope sustains me. And so, when energy for me is a valuable commodity, I do not waste it. I choose to focus my energy on hope, and what will make getting through the day easier.

I believe that what you put out into the universe to get back. So I put out the belief that there is a cure out there, that another will never know the suffering that I have, that there is a scientist out there with answers to my disease that make sense. And that tomorrow, if even in a small way, is a bit better than today.

Chronic Illness: 10 Tips for Travel

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Now is the time of year when we pack things up and head out for a relaxing time away from the hustle and bustle of everyday life.  Before you head out here are a few tips to make the trip a little easier with any kind of chronic illness.suitcase copy

  1. Make sure that you are well rested the night before traveling.
  2. Pack light. If necessary pack two lighter bags instead of one heavy bag. Don’t be afraid to ask for help with the carrying as well.
  3. Make sure to keep a water bottle and healthy snacks along with you.  The water will keep you hydrated and help keep the inflammation down.  The snacks will make sure that you are eating something that will not cause more inflammation.
  4. If traveling by car, take frequent stops to stretch.  Getting there a little bit later that expected is better than getting there sore.
  5. Remember to bring items that make you more comfortable( for example a special pillow or heating pad ) if you start to feel stiff and sore.
  6. If traveling by air, make the reservation early and don’t be afraid to make special requests like a seat up front with plenty of leg room.  Some people like direct flights but it may be better to have a layover that will allow you to get out and walk around a bit and stretch depending on the length of the flight.
  7. Talk to you doctor and get copies of your prescriptions to keep with you in case something happens to your medication when you are far from home.  Make sure you bring plenty of extra medication as well in case the trip lasts longer than originally planned.
  8. Wear comfortable loose clothing and comfortable shoes that are easy to take off and put on especially if you are traveling by air.
  9. Pace yourself.  Make sure there are plenty of periods of activity followed by periods of rest. You don’t want to overdue things and end up sidelined and miss some of the fun.
  10. Relax.  If you have forgotten to pack something there are always shops along the way to pick up whatever you may have missed.  Don’t fret about the hiccups along the way it’s part of the adventure.
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