Category Archives: Solutions

LivingRheum is Going Green for Lyme Disease Awareness Month

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.

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

medicalcopy

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.

Continue reading

Kitchen Gadgets for Arthritic Hands

Ten years of uncontrolled inflammation has done its damage and my hands no longer work the way that they should. I find that sometimes it’s the simple things that I can’t do that can be the most frustrating.

For me opening a zippered plastic bag is almost impossible. I usually just get frustrated and grab some scissors and cut the thing open and then use one of those slide bags to store the contents in the future.

Continue reading

Hope and Chronic Illness

 

 

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.

Seize the Day

One of the most important lessons that any chronic illness teaches us is that nothing, including health, is permanent. During the times when we feel able, we have to seize the opportunity to enjoy it because those moments can be fleeting.

When given the opportunity to do something, I do it. I don’t put things off.  I may or may not ever get the same opportunity again and I may never be able to do what I can now so I may as well go for it.

Certain activities, like yoga, give me a  great deal of peace and pleasure. It centers me in a way that no other activity has been able to. The connection with my body and mind is something that I truely relish. It is not an activity that I am able to do all the time. Unfortunately my body does not always want to do yoga as frequently as my mind would.  When I am able physically to practice yoga I am completely in the moment and I really give myself some time afterward to savor the experience.

I have learned to focus all my energy on the experience in front of me. Tomorrow is something I can deal with then. Yesterday I cannot change. Today is all I have and I cannot predict where I will be in the future, so I need to focus on now.

From day to day I really never know what I am going to feel like. So planning ahead is really not a great option. It used to unnerve me, not being able to plan ahead, but I’ve chosen to embrace it.

Everyday is an adventure. Some days the adventure is spent on the couch. Other days going for a long walk. But each day and each experience is of value.

Misdiagnosed with Rheumatoid Arthritis: My Lyme Disease Journey Continues

A little more than a year and a half ago, I started treatment for Lyme disease. After 10 years of misdiagnosis and treatment for rheumatoid arthritis my immune system was seriously compromised.

I would love to tell you that I simply took some antibiotics and instantly felt better, but unfortunately that has not been the case. My body was in pretty bad shape. By the time I finally got the correct diagnosis, I not only had to try and kill these Lyme bacteria, but I had to rebuild my immune system that we had been suppressing for 10 years.

What I didn’t know back then that in addition to Lyme disease, I also had what is now known as protozoa rheumatica. Treating both the disease and the biofilm has made a huge difference in how I feel.

For the first time in over 10 years my SED rate is normal. My RA factor (RF)which had been as high as 718 is not down to 115. It has been going down by over 100 points every 8 weeks. That means that 7 weeks from now it will be normal if it follows the same pattern. I have finally turned the corner and feel like I have made some real progress in getting well.

I’m not running any marathons, but I am able to dress myself once again and I can roll over in bed, something I struggled with 18 months ago. It’s the little things as well as the big that became impossible. I could not cut my own food, cover myself with a sheet, let a lone a blanket. I couldn’t put socks and shoes on and forget about tying them.

The pain was more than I had bargained for as well. My joints swelled to a point where at times I could barely recognize them. Here is a picture of my ankle then (scary, isn’t it?)

Swollen ankle

and here it is today (much better, I’d say).This is the same ankle that was the first sign of problem. And the same ankle that the rheumatologist shot up with steroids. (which by the way, did not help)  As you can see I could have picked up the coffee table a bit before taking the picture, but my priorities have changed a lot since this all began.  Clean is nice, but not as important as it used to be.

My ankle now

The difference feels amazing.

There were times that I was genuinely scared. It took me a long time to get this diagnosis and I had finally trusted my instincts and knew deep down that this was the right path for me, but years of being told that I was wrong, that this was RA had taken a toll. It was in the darkest of times that I found myself doubting my choice. After all there had been so many doctors telling me that this was RA, how could I be absolutely sure that this doctor was right. I kept hearing the warnings of my first rheumatologist in my head, “We don’t want you to end up in a wheelchair. Do we?”

Unfortunately that is exactly what happened. Last year, my walking had become so bad and so painful that I had to rent a wheelchair for my nephews graduation. It was a scary time. I had come to a place where I didn’t trust any doctor, but I desperately needed help. I finally came to the decision that I had given the other doctors 10 years to help me and look what happened. I needed to give this one at least a reasonable amount of time to do the same. It became increasingly frightening when every six weeks my RA factor kept going up.

It took a fair amount of resolve to keep going and continue trusting my gut. It wasn’t until over a year into treatment that my RA factor started to go down. It has been steadily going down every since.

I no longer need a wheelchair and the simple act of walking is no longer painful. I do use a cane for balance, but I am hoping that soon I will be able to get rid of that as well.

I don’t know how much longer I will be fighting this battle.

There will be scars.

But in the end I will survive and hopefully help a few people, who see themselves in my story.

 

Chronic Illness: 10 Tips for Travel

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.
Blog Widget by LinkWithin