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.
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?)
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.
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.
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.
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.
The past 6 months have been somewhat like a bad dream. I never could never have imagined being sick for this long with so many different ailments. I can’t help but wonder if all the years on methotrexate had such an effect on my immune system that everything kind of shut down for a while. With all this down time I have had the opportunity to learn somethings about myself. I thought I would share some of what all this sickness has taught me.
- Trust your instincts. When two of my doctors had conflicting opinions on whether or not I had a second or continuing Lyme infection I should have trusted my instincts. I could have saved myself valuable time and pain and not have subjected myself to way too many diagnostic tests had I just trusted my gut. I know my body better than anyone else and I knew that I still had Lyme Disease. I shouldn’t have allowed my rheumatologist to talk me into more tests to prove that her opinion was right when I knew deep down inside all I really needed was another treatment of antibiotics. When I finally got the antibiotics was when the symptoms went away and I started to feel better. Lesson learned. Again. I hope this time it sticks.
- Lyme Disease is something to take very seriously. I have had Lyme Disease in the past. I thought that I knew and understood what this disease could do. I could not have been more wrong. I have never in my entire life felt more physically ill than I did with Lyme Disease. I can’t say whether or not the Rheumatoid Arthritis (RA) had an effect on the severity of the Lyme Disease but I know that the treatments for the RA had an effect on how well my body was able to handle Lyme Disease.
- I need to nourish my body and my soul. I have always been the one who puts everyone’s needs before mine. It wasn’t a conscience decision, but none the less other things took priority in my life. Now every day I am slowing down and taking time to do things that nourish my soul. Things that bring me joy nourish my self. I find that I have more patience and energy for other things after making my self a priority. Before I put anything into my body I am asking myself will it nourish me or fill me. They are two very different ideas. I have tried to eat responsibly in the past, but I haven’t always looked at what I am putting into my body as nourishment as opposed to something that will fill me up.
- Don’t be afraid to ask for help. Being an independent person and a bit of a control freak I frequently would rather do something myself than ask for help. Part of me just didn’t want RA to get the best of me. I felt like it was a bit of a battle of wills. I wasn’t going to let RA take over my life completely, I could do most things myself and I hated to ask anyone for help. Being as sick as I have been, I have had no choice but to ask for help. There were days when getting out of bed to go to the bathroom was an ordeal. An extremely painful ordeal. It was simply impossible not to ask for help with some of the most basic of needs. I discovered that the world did not end and it was okay if things were not done “my way”.
- A clean house is nice but really not all that important. I used to care very much about how clean my house was. I felt that how my house looked was a reflection on me and how I cared for my family. I know that sounds a little nutty but that is how I felt. I really felt like I could not physically do a great many things anymore but I could take care of my family and a clean house was part of that. Of course now looking back I can see how crazy that whole idea sounds. My house currently is picked up. No one is going to trip over anything in my house, but it is a far cry from clean and I really don’t care. I could spend the next few hours cleaning, or I could spend the next few hours playing with Kevin or reading a good book. Now I choose something that will fill me up instead of depleting my resources.
- Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways. There is comfort in knowing that there are people out there that completely understand what I am going through. I am very grateful to all the new friends that I have found here and for their kindness and support.
I have not written a post in quite some time now. I have been going through some physical challenges since this summer. It seems that lyme disease does not want to let go of me right now and that is complicating the rheumatoid arthritis. You cannot treat both diseases at the same time so something has got to give and it has been and will continue to be the RA treatment until I am convinced that the lyme disease is gone for good.
I have spent the better part of the past 4 months without the RA treatments that in the past were working for me. So the challenge right now is finding some natural ways to deal with the inflammation and pain of rheumatoid arthritis without it countering the lyme treatments. I am trying right now to find the right combination of diet and supplements that will give me the best results.
This is a new development for me. Over the past 8 years I have never gone without medication for such an extended period of time. It has caused me to question a great many things. In the beginning I was mostly afraid. I almost feel like the medication was somewhat of a crutch for me. I am not saying that we shouldn’t seek out medication for RA. What I am saying is that maybe I didn’t look into some of the other options available to me because I didn’t have to. The medication worked so well that there really wasn’t any need to look further.
I feel like I am embarking on a new direction for my health. It is a little scary for me. There is a certain amount of comfort that goes with handing over the control to the doctor. But now that I have made the decision to take an alternative route, I am feeling empowered that I am in control of my own health and I am hopeful that this will be the right decision for me and my family.
I am hoping that I will be able to post more in the future and keep you up to date on my progress. But for now I am trying to focus on my health and healing and trying to take each day as it comes. I am truly grateful to everyone who has expressed their love and support. It means more than I can say.