So LivingRheum.com has a new look.
So LivingRheum.com has a new look.
I had to share this quote, because it really speaks to me.
“There is no medicine like hope”
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.
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.
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.
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.
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.
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.