Tag Archives: rheumatoid arthritis

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.

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.

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Innovative New Treatments for Rheumatoid Arthritis (RA)

Gary S. Firestein, MD,  of UC San Diego Medical Center speaks about innovative treatments for rheumatoid arthritis including promising new findings with inhibitors of signal transduction. It is good to know that there are new treatment options on the horizon for those whose current therapy is unsuccessful.  There is not a one size fits all remedy for this disease. I think that it is important to have choices and options.

Rheumatoid Arthritis: First Visit With The Rheumatologist

I have to admit I was a little nervous about my first visit with the rheumatologist. I wasn’t really sure what to expect and there was a certain amount of fear of the unknown.  At the same time I was really hopeful that this doctor would help me get back to my old self again.

When I got to the office I realized that this was a practice of 4 rheumatologists and my mother had been to one of the doctors in the practice years before when she still lived in Rhode Island.  At the time I really couldn’t remember if she liked the doctor or not.

The office was clean and the office staff seemed to be efficient and polite.  I filled out all the necessary paperwork and insurance information and waited to see the doctor.  Lucky for me the wait was only about 15 minutes.  The nurse called my name and led me to the doctor’s office.

He was about my age and he seemed very professional.  I learned that the practice was associated with Brown University Medical School and was a teaching practice. He seemed very nice. He asked me a few questions about what was going on with my body. I explained that it all started with my ankle and then my knee and then my wrist.  I told him about the Lyme Disease, that we live in a area where there are a lot of deer ticks.  He asked about family history and I told him that my mother has rheumatoid arthritis.

It may just be my impression, but it seemed that the minute I mentioned that my mom has RA, that was it. There were no more questions, no other ideas as to what was going on with my body.

He then led me to the exam room, where he listened to my heart and lungs and moved all my joints every which way.  He squeezed my finger joints and wrists and then announced that he believed that I had rheumatoid arthritis.

My initial reaction was “What happened to Lyme Disease?”

He said no it was RA.  He said that he wanted to do some more testing but he was fairly certain that it was RA.

I said something to the effect that I thought that Lyme Disease kinda jumped from one part of the body to the next and what about the fact that I had tested positive for Lyme.

He said that with my family history, he really felt that it was RA.  He said that he wanted to put me on some medication that should make me feel better, while he did some testing. He told me to trust him, that he would help me feel better.  That the medication would get me back to my old self again and that he would see me again in a few weeks with the test results.

At the time I was in so much pain and this man was offering some relief.  I decided to have the additional test done and take the medication. It was only for two weeks and maybe this guy could help me feel better.  After all the other doctor wasn’t really helping.  I needed to be able to take care of my baby and I was sure that the tests would show that he was wrong about the rheumatoid arthritis.

He gave me a prescription for prednisone and told me to set up an appointment to come back in two weeks.

My instincts were telling me that this wasn’t right, but I told myself that this doctor was teaching at one of the most prestigious medical schools in the country, who was I to question his expertise.  So I took my prescription and I made my appointment and I hoped that he was really going to make me feel better.

The next part of my story has had the biggest impact on my life.  It has taught me a great many things and I can’t wait to share it with you.

Rheumatoid Arthritis: How My Journey Began

When I started this blog the idea was to talk about what works for someone with rheumatoid arthritis.  I wrote a fair amount of posts about what foods and herbs help to fight inflammation and a few about the products that made my life with RA a little easier.  All in all I have been pleased with what I have shared and learned along the way about RA.  I hadn’t planned on all the amazing women and men that I have met through this blog that have given me strength and support. That was an unexpected blessing.  To all of you I am truly grateful.

It occurred to me that I really have not shared my story.  How I got to where in am now and the questions that I have been wrestling with lately.  I haven’t written much because I was hoping to have some answers to report instead of more questions.

So I want to take a step backward and start at the beginning, because  how I got here is important.   I didn’t know until recently how important.

About 6 months after Kevin, my youngest, was born my right ankle started to swell.  I hadn’t twisted it. I hadn’t fallen.  There seemed to be no explaination as to why it was swelling and why it hurt. So I went to an urgent care center where they took and X Ray and really could find nothing wrong with my ankle.  The doctor told me I must have sprained the ankle and gave me an air cast to wear for several weeks with some anti inflammatory drugs to take and sent me on my way.  I followed his instructions; I stayed off the ankle as much as possible, I iced it and I took the medication.  Eventually the ankle improved.

Almost as soon as my ankle improved, my left knee started to swell and hurt.  I thought maybe that I had been over compensating for the ankle and had somehow thrown my knee out of whack.  I iced the knee and took anti inflammatory medication and rested it as much as possible and it seemed to improve after about a month or so.

Shortly after my knee stopped bothering me my left wrist began to give me problems.  It really hurt and was swelling a lot.  I thought maybe that I had carpal tunnel because I spend a good amount of time everyday typing.  I went back to urgent care and they seemed to agree that this could be carpal tunnel and they gave me some wrist guards to wear.

I wore the wrist guards as instructed, took more anti inflammatory medication  and hoped for the best.

While my body was giving me all this trouble I was trying to raise a 10 year old, a 6 year old and a new baby boy.  I was exhausted all the time, but at 35 I figured that I was not as young as I used to be and now I had 3 boys needing my attention, a full time job and a business to run with my husband.  I certainly had a full plate and there were plenty of reasons for me to be tired all the time.

My husband works outside all the time and Lyme disease is something that I thought we were pretty familiar with.  It was Eric who thought that maybe it was Lyme disease that was causing this joint swelling.  It is typical for Lyme disease to kind of skip from one spot on the body to the next wreaking havoc. So a few days later I was back at the urgent care center asking for a Lyme test.  The doctor asked me if I remembered a tick bite and I really didn’t.  We live in a wooded area and there were many times that I have been bitten by ticks. We are really careful with deer tick and I am fairly sure that if I had seen a deer tick in me I would have been tested immediately.  The thing is some of these ticks are the size of a poppy seed.  It is within reason that I could have been bitten by a tick the size of a poppy seed in a location that I could not readily see and not know it.  It doesn’t hurt when they bite.  So it is completely possible that I could have been bit and not known it. That was really not what the doctor wanted to hear but I was able to convince him to give me a Lyme test.

Anyway to make a long story longer… after about a week the test came back positive for Lyme disease.  The doctor put me on zythromax for 5 days.

After two weeks I was still not feeling better.  My wrist was really bothering me and the swelling was so bad that I actually lost the ability to give a thumbs up.  There was so much swelling in my wrist that the ligament that moves the thumb was lifted from its initial location (because of the swelling) so that I could no longer give a thumbs up.

I went back to the doctor and he put me on another course of zythromax with some new anti inflammatory medication and sent me on my way.  He told me to give it another two weeks and I should be feeling better by then.

By the time two weeks had passed not only was my wrist swollen and painful but now my feet were swelling and my knee was back to giving me trouble again.

When the doctor took one look at me and knew that the current course of treatment was not working.  He said to me that this was beyond his level of expertise.  He said that he could send me to a infectious disease specialist or he could send me to a rheumatologist.  He felt that the rheumatologist was probably the best way to go because a rheumatologist could handle Lyme disease as well as any arthritis issues that I might have. He said that there was a new rheumatologist in Providence that he had heard good things about and he set up an initial appointment for me and wished me luck.

This is how my journey began.

Stay tuned to hear how we progressed to where I am today.

Lyme Disease Again.

Just when I thought that I was on my way back from this bad turn my body had taken, I got hit with another setback.

Lyme disease.

Again.

I think the universe is trying to tell me something. I’m just not sure what the heck it is.

It just so happens that May is Lyme Disease awareness month.  Let me do my part to make everyone aware that Lyme Disease is not something to mess around with.  It will make you sicker that you ever thought possible. Even now after way too many times with this dreadful disease, it still amazes me that some little critter the size of a poppy seed could do so much damage to my body. If you are ever unsure if you have lyme disease or not trust your instincts and get treatment.  The sooner the better.

The latest bite my outside exposure was literally less than 1 minute.  I was not in a wooded area.  I was not treking through a meadow.  I walked out my front door, said “Man it’s cold out here.” and I walked back in the house. Hours later, I scratched my leg and found the tick and naturally it was a deer tick.

Outside of living in a bubble I am really not sure how to protect myself and my family from this awful disease.  We have done everything the literature suggests to keep ourselves free from these nasty ticks. And yet here I am again with Lyme disease.

I’ll keep you all posted as I am able.

I hope everyone has an amazing Mother’s Day weekend.

🙂

How I See My Rheumatoid Arthritis

Yesterday I decided to stop by the market on my way home after dropping Nate at a friend’s house.  Kevin and I ran (and I use the term loosely) into the store and picked up a few odds and ends that we needed to get us through the week.

I was lucky and got a good parking space close to the entrance.  I normally don’t mind a spot that is a bit away from the door because it gives me a chance to walk off the stiffness before I actually make it into the store.

While I have made improvements with my walking, lately it is a deliberate act, not something that comes with ease.  Things got complicated when Max, my 110 pound golden retriever ran head first into my knee when he got spooked.  So everyday I have been moving that knee a lit bit more and it is coming along, but it has been slow.

Kevin and I made our way through the market, picked up what we needed and a few things that we didn’t and checked out.  We got to the car and my little helper opened the hatch to the back of the vehicle and helped me load the packages.  When we were finished, he took the carriage to the return spot and hopped in the car.

While he was returning the cart, I was slowly trying to get my sore knee in the vehicle.  It took me a couple of minutes to maneuver myself so that I was not in pain trying to accomplish this simple task. When I had finally got myself situated and started to put my seat belt on, I was startled by the honk of the horn coming from the car beside me.  There in the neighboring car was a little old lady gesturing with her handicap placard, mouthing the words “You need one of these.”

I couldn’t believe what I was seeing.  I was stunned.  It never occurred to me that I might need a handicap placard.  All I could think is “How bad do I look?”

What I did was cry.  I couldn’t help myself.  I just burst into tears.

From the backseat I heard, “That lady is a jerk!”, “You are not handicap.”

I couldn’t even respond to my sweet boy.  I just cried more.  He didn’t realize I was crying and when he did, he unbuckled and climbed in the front with me hugged me and cried with me.  He just  kept repeating “You are not handicap. You are not handicap.”

At this point I had to pull myself together so that I could talk to my son.  We sat for a few minutes and talked about the fact that I can’t do some of the things that other people can do and what handicap means to each of us.  We also discussed that the lady next to us probably had the best of intentions, even though she made me cry.

All of this has made me question, what handicap really means to me.

Am I handicap?

Well yes and no.

Is it more than a physical state of being?

I think so.

Am I not being honest with myself about how my body is doing?

I really don’t know right now.

I am still working on the answers for me.

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