It started as a good day yesterday. Even though, it was raining cats and dogs. I managed to take care of a few errands. I started to feel my energy wann around 3:30 P.M. I was going to go home and take a nap before a birthday dinner of a friend. Well, when I got up I felt my shoulder ache. No time for this. I took a shower and asked my daughter to put some cream on it (it’s like a icy hot) because I did not want to take pain medication. It wasn’t 5 minutes after she put it on I began to itch like crazy…all over my back and face. I knew I was having an allergic reaction and it was possibly setting off an itching flare (unexplained undiagnosed flare the doctors can’t determine why or cause). So, I took my last Benadryl and a Fantominide cocktail which calms itching fast (learned that from a nurse in the E.R. when it happened the first time). I had to cancel my plans to go out…so much for margaritas!!! But then around 11:00 P.M. I started itching again…and I had to throw on clothes, make a mad dash to the grocery in rain to get more Benadryl because I was out! My parents are aging, my brother was at work, and other siblings are older than I am blah blah blah…I was on my own. I never want to bother anyone i.e. friends because they live too far and even if they live close…they don’t seem as if they want to be bothered if that makes sense. I’d much rather you bother me, than I bother you.
I made it home. Texted family I was ok. I woke up this morning, but could not get out of bed. Talk to Mom, didn’t tell her I couldn’t get up (didn’t want to worry her=she’ll call everybody-everybody will call me-I don’t want to talk). I got up to shower and discovered my shoulder still hurts, including, hip and knee. I make it out the shower, to the kitchen, put breakfast on at 10:15 and soon realize, I can’t stand long so I push it and sit. And write to you…
I spent money for a very famous fashion show today because fashion is my first love. I did not have money for the all day events and I don’t think I would have lasted anyway. But, to now think I may not even be able to make it to this world renown fashion show is gut wrenching. It is this very moment, well, all night really, I wonder if I can do it. If I can still pursue fashion with this evil disease and at my age of 42. I think about giving up. I think of all the problems that would come with it. I think…if only I was not deterred at a young age to NOT pursue fashion, I would already be doing it and perhaps well established. I know I have the gift. I may not know #@$% else about myself, but I do know that. That is the one thing I have always been confident in and comfortable with.
Getting dressed, doing my natural hair, painting my nails, wearing heels, forcing myself to walk straight, walking a long distance…
For the first time I contemplate if I am in over my head trying to reach for a dream that will not die…
You remember what it’s like to get sick as a child and friends are outside playing. You hear the laughter, you see them running around playing a game of hide and seek, or playing with their superheroes or dolls. You say to your mother, “Mom, I want to go outside and play, too.” She says, “I know honey. But, you can’t. You’re sick and you have to get well first.” So, there you go. Back to the window to watch your friends play. Until you feel well again.
This is exactly how I feel many times as I watch the events of family, friends, and other events that play before me live and in living color on social media. I sorely wish I were there, too. Creating memories. Laughing along. Right there in the moments captured forever. Especially, the very big moments and events. I and so many others who live with chronic pain also live with unpredictability of the symptoms. And there we are. Trapped in the house, until the symptoms subside enough for us to go out to play again with everyone else. You may be disappointed and you probably understand. But no one, and I mean no one, is more disappointed and upset or even as angry as we are. We are many times at the mercy of a body we cannot control. And, for the record, many of the other times you see us out living it up, selfies and all, we are smiling and playing through the pain. Tough guys and gals we are indeed!
It makes me happy to see others happy and enjoying life. I know I will be there in the moment soon again. When you realize it’s not about others or you and your pain all the time, but it is collectively about sharing in the joy and laughter of others lives that fills your heart whether you are there physically or through videos, listening to the stories behind each memorable moment and looking through photos. Energy is energy and sometimes you have to experience it at different frequencies. Accept and embrace. Sad that I can’t be there? Yes. But the happiness that you are there, friends and family are there, enjoying life is greater than my sad moment…that shall pass.
It started in January and it has not left me yet. I thought it was “just” joint pain from rheumatoid arthritis in the left hip giving me a hard time and keeping me tossing and turning at night. Surely, it will go away. It didn’t and I tried prednisone because I thought I was having a flare. That didn’t do much. I tried naproxen and it didn’t do much either. It got really bad and then during the day, instead of going away it just dulled and would flare at time. I called my rheumy.
“Come in for a shot!” Oh no! I didn’t want that! But as I went the next day, he examined me first and said, “No. You don’t need a shot. You have an inflamed ligament. Let’s try physical therapy. Once in physical therapy, I learned the name of this condition: enthesopathy. The inflammation of it is enthesitis. I have that.
“In medicine, an enthesopathy refers to a disorder involving the attachment of a tendon or ligament to a bone. This site of attachment is known as the entheses. If the condition is known to be inflammatory, it can more precisely be called an enthesitis.”
Last night was awful. It had been nagging a few days. The new pain medicine did nothing. I got some relief with the heating pad. My concern is that this could be a permanent condition and there could be damage as I researched credible sites that said this could be possible for those with an autoimmune disease.
As I try not to worry about it much, and face these things head on, it is very difficult when RA seems to present an obstacle course on top of the obstacle of life.
I woke up Saturday morning and noticed my right eye was a little red. When I returned home later on that evening both eyes were turning red, began to itch and I had pain behind both of them. Like RA in it’s grand fashion…it all happened suddenly. I have had itchy eyes before, swollen eyes, and this. I knew what it was.
It rarely happens to me, but for some it happens more often. I thought I would leave a link to an article that discusses all of problems that can occur with your eyes involving Rheumatoid Arthritis. Please take a moment a read it.
What did I do for my eyes? A cold towel, eye drops, and a naproxen for pain. They were better yesterday and today they are irritated this morning. I will have to give my doctor a call if they do not clear. I have never gone longer than 3 days.
It’s the most wonderful time of the year alright! But, tell that to Rheumatoid Arthritis! For many of us the cold weather causes our pain to increase and our activities to decrease. I don’t know about you, but my pain also increases over in the night when temperatures are dropping. It took me a few years to realize preparation makes things smoother even when your RA is unpredictable. We winterize our homes and I said to myself “Self, what about winterizing RA? Share what works for you and ask others to share what works for them!” So, here is my list of things that work for me. Please feel free to share yours.
- Clean your gutters-Clean your nightstand…and keep cleaning it! As soon as I clean my nightstand and it’s picture perfect, I blink and it’s cluttered again. In the middle of the night who has time to fumble around and knock over the water bottle. Which takes everything else along with it as you search for the lamp. (Do purchase a cheap lamp for your nightstand. Bright light in the middle of the night makes harder for you to get back to sleep).
- Get a container from the dollar store. Place your water bottle, pain medication, fuzzy socks, compression gloves, etc in it. Everything you think you will need at night. I have a fashionable pill box in for my purse. I find that if I take it out at night I forget to put it back in or if I put it back, now a pain pill is missing if I need it when I am out. So, I have a pill box (or get a ziploc bag) with about 5 pain pills in it and toss it in the bucket. Everything I need is in that container for the night. The good thing about he bucket/container you can take it with you to the family room!
- Reverse your ceiling fans! It helps circulate the heat in the room.
- How many times have I forgotten my gloves? I can’t keep count. So I keep an extra pair of gloves in the glove compartment.
- Get some winter boots with a good treading for snowy days. We really don’t need a fall! Our gait can be a bit “wobbly” at times.
- Blankets are our friends. A blanket in the room where you watch TV or an extra blanket or quilt across your bed comes in handy.
- Exercise. You may not can walk in the cold and well, there goes your exercising routine. However, marching in place during commercials or doing some for of exercises indoors will keep your joints from getting stiff. My fibromyalgia seems tightening my muscles more in cold weather. So I do much more stretching via yoga. I love yoga.
- Open the curtains and blinds. A dark home can be a bit depressing and when things are not going well for us, pain and etc., a lighten mood is welcomed. Especially, by our loved ones who live with us! No bah humbugs here.
- More pain equals less cooking. If you can, when you are feeling well or have help, cook in batches and have a plan. Soups, chilis, casseroles all make cooking less of a task in the long run. Also, a few frozen dinners never hurt anyone.
- Breathe. Meditate. Grab a good book. Tell winter how much you love it and you are glad you are here to see it. Don’t let RA make you “hate winter” or the holidays. Think on the things you still love about winter. I love the cozy feeling. I like the fireplace going or all of the different chilis you can save on Pinterests that you never make! LOL
If you have any tips please share!