Category Archives: Wellness

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.

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.

The Benefits of Cherries for Arthritis

Researchers at John Hopkins University in Baltimore, Maryland have confirmed in recent studies that tart red cherries can reduce inflammation and serum urate levels.

The benefits from the tart red cherries (prunus cerasus) are important for anyone with inflammatory problems especially arthritis and diabetes and connective tissue diseases. Anthocyanins which are plant phytochemicals in the cherries may offer protection from some forms of cancer. The researchers believe that the anthocyanins reduce oxidative stress which is a major cause of inflammation in many diseases.

In an other study, scientist showed that the anthocyanins in tart cherries may help prevent muscle pain experienced after intense exercise. In this study, young men drank cherry juice daily and experienced decreased symptoms of exercise-induced muscle damage.

Cherries may also help prevent gout, a painful joint condition.

Weather it’s canned, fresh or frozen cherries the benefits are plentiful. The darker the cherry and tart cherries have higher anthocyanin content and therefore the bigger benefit. Both tart and sweet cherries have high levels of anthocynins.The skin of the cherry holds most of the beneficial anti-oxidants.  In two different studies, women who consumed 2 servings of Bing cherries daily, experienced decreased serum urate levels and reduced inflammatory markers.

Dietary supplements are also a good source of tart cherry at 1200mg/serving. Tart cherries are rich in vitamin C and also have folate, potassium, magnesium, iron and fiber. Cherries are also a good source of natural melatonin. Melatonin is an important anti-oxidant that helps to modulate the immune system and can help protect against degeneration of the neurons in the brain.

Cherry season is right around the corner and I plan on stocking up and enjoying the benefits of nature’s bounty.

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.

 

Misdiagnosed with Rheumatoid Arthritis (RA): My Lyme Disease Story

As some of you may have heard, I just recently found that I was misdiagnosed with rheumatoid arthritis (RA). I have Lyme Disease.

Anyone who has followed this blog probably knows that I thought that I had Rheumatoid Arthritis (RA) for over 9 years. I have always had some doubt about what was going on with my body and the effectiveness of the treatments the doctors were prescribing. But I trusted my doctors more than I trusted my instincts. My story is a cautionary tale for anyone who has been diagnosed with an autoimmune disease.

Let me start by saying that we live in rural Rhode Island. We have a small 3/4 acre wooded lot. All sorts of wild life can be found in our yard at any given time and there is no shortage of deer that visit our property. We moved out here to raise our family in a quiet, serene place with good schools and friendly neighbors. Unfortunately, with the good comes the bad, and the deer carry ticks that carry Lyme Disease.

Each member of my family at one time or another has had Lyme Disease. It is not uncommon to be outside for only a few moments and pick up one of the poppy seed-sized ticks. For the most part we have all either tested positive with Lyme Disease or the tick if we were able to keep it tested positive with the disease.

9 years ago I had been bitten by a tick. At the time, I was tending to my newborn son, and had two older boys to watch over as well. In prior exposures to the disease, I had felt “flu like symptoms” and that was my cue to get tested. I don’t know if it was adjusting to three boys and 2 jobs or if I was just too busy to notice, but I really don’t remember any “flu like symptoms”.

It started with my ankle. It hurt and was swollen so I went to the urgent care center where they X-rayed it and told me they could find nothing wrong with me. The doctor prescribed an anti-inflammatory and gave me and air-cast. We were going with the assumption that I must have sprained my ankle even though I couldn’t remember doing anything out of the ordinary.

Continue reading

Rheumatoid Arthritis: Survival Mode

These past several months have been an exercise in survival.  I am feeling better than I have in months, but I still have a way to go before I am at a place where rheumatoid arthritis is not in every other thought.  I have come to a place of survival.

All this down time has made me wonder how many of us are living with this disease and how many of us are in survival mode?

What is survival mode? For me it is getting through another day.  Surviving the day with rheumatoid arthritis.  Not exactly my idea of fun, but I am getting by. I wonder what survival means to everyone else with this disease.  While survival is better than giving up it is not where I want to be.

I am an optimist so I believe that this is just a temporary setback on my journey to living well with RA.  The idea that this survival mode is a permanent situation is not something that I am willing to entertain ever.  I have too much fight left in me to settle for half way.

I am grateful to be out of bed. Two months ago I was flat on my back all day long.  I am grateful that I am able to tackle small tasks on a daily basis so that I feel that I have accomplished something.  But this is not where I want to be.  I know that I have a ways to go and that this will probably take longer that I originally anticipated, but I am in this for the long haul and I am determined to find a new way to live with this disease without adding toxic chemicals to my body.

Here is what I have been doing so far and it seems to be having an impact on my overall wellness.

  • I am monitoring my diet and have eliminated dairy from my diet. I have found out the hard way that if I do ingest something that has dairy in it I will swell. I have been adding and subtracting different foods from my diet to see what is having an impact on inflammation. So far dairy has had the biggest impact.
  • I have been taking Flaxseed Oil (I can’t do fish oil supplements) and Vitamin D daily.
  • I have found that mediation helps me sleep better and makes mornings a little more manageable.
  • I am starting to be able to exercise ( I am using this term loosely because the rate of speed that I walk would hardly be called exercise, but it is movement and more than my body has seen in months.)
  • I am careful about what I eat and have lost over 25 pounds since January 1, 2010.
  • I spend time every day visualizing what it looks like to be free of stiffness and pain.

So far I am improving and I hope to be back to my old self soon.

In all honesty I have felt this bad on methotrexate.  I have had the same levels of pain, inflammation, and stiffness while on mtx so I have been pleasantly surprised at my progress and so far happy with my decision to look for an alternative solution to mtx.  It has made me wonder on more than one occasion how well the mtx was really working for me.

So for me, tomorrow is a new day with new hope for less pain and inflammation and life mode not just survival mode.

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