Sunday, March 9, 2014

Frozen...Like a Block of Ice....

It's past midnight, I crawl into bed hoping for sleep, tonight is one of those nights that it doesn't seem very likely. I toss and turn watching the clock until about 2am. Finally the meds kick in, my eyes close, my muscles relax and sleep comes.

Suddenly, I'm awake! My eyes slowly adjust to the darkness and I twitch one muscle to move, PAIN, screaming through my head, places on my body hurt in areas I didn't know existed. Frozen is the best way to describe it, like a block of ice, yet I feel like I'm on fire at the same time. I stop breathing and start to assess; can I move this muscle without screaming pain, can I roll over, can I straighten my legs?

While I'm thinking of this, I'm also wondering can I get to the pain meds on my bedside table? Did I remember to bring a bottle of water in last night? Did I remember the granola bar I always forget? I wonder if I can turn over. I slowly test my joints, muscles, limbs, hands and feet to see if I can do it. Then it hits me, I didn't put the granola bar on my table. I panic thinking that I'm going to need to walk to the kitchen before I can take my pain medication.

Fear and dread envelop me and I wonder where I will find the strength to drag myself into the kitchen. The optimist in me reaches my arm out to the table and comes in contact with the granola bar, for a moment my head and my heart sing, I thought ahead.

Now all I need to do is figure out how to sit up, drink my water, eat my granola bar, and take my pain medication. Every groan muffled, every joint on fire as I throw my legs over the side of the bed to sit up and take my pills.

I rearrange myself back in bed with multiple heating pads placed around my body. I'm in too much pain to get to the kitchen to grab ice packs, thankfully once my head hits the pillow I fall asleep again. The pain meds start to do their job and by 7:30am when the alarm goes off I roll over and turn off my alarm.

It's time to get out of bed and help my daughter get ready. I throw my feet over the side of the bed and gently sit up and take stock of which joints and which muscles are going to work today. I gingerly stand up and right away I know, yes, the foot is not going to work, the hip still painful from surgery, the knee waiting for surgery, the back always a pain, the shoulders screaming from lying on them during sleep, and I never know whether the neck and jaw will decide to be calm or decide to rebel, today thankfully they seem quiet.

I shuffle into the bathroom like a 90-year-old man, look in the mirror and see a 43-year-old woman that has been fighting Rheumatoid Arthritis (and Juvenile Arthritis) for 41 years. I attend to business wishing my hands didn't ache and then shuffle out to the kitchen to help my daughter pull her hair back in a ponytail, help her get breakfast and then drive her to the bus stop. I come home, eat my own breakfast, take my meds and crawl back into bed to get the rest of the 12 hours of sleep I need every day. Well, let's just say I spend 12 hours a day in bed, that doesn't mean I actually sleep 12 hours.

I get up to shower, I shuffle into the walk-in enclosure and thank God when we bought this house we made sure to get a shower I didn't need to step up into. I wrestle with the 3 bottles of soap, conditioner and shampoo. These bottles aren't made for hands that don't work. First snap off the lid and then squeeze the contents out into your hands. I spend about 10 extra minutes just trying to get to the stuff that will make me clean. I dry off more tired than I was when I started and it's off to the doctor.

I make most of my doctor appointments for the afternoon so I can spend the morning catching up on sleep I missed the night before. I usually require at least 3 doctor appointments a week. Whether it's my Primary Care Doctor, Physical Therapist, Endocrinologist, Hematologist, Rheumatologist, Orthopedist (of which I have three) I will spend at least two hours getting to and sitting in a doctor's office taking care of my health.

When I get done it's time to rush home to get my daughter off the bus, we grab a quick bite to eat and jump in the car to take her to tutoring, this happens twice a week I used to be able to stay with her for the hour waiting for her in my car. When my hip joint decided to join the RA club that was no longer an option, so I drop her off and my husband picks her up, 45 minutes of driving.

When I get home it's time for dinner, let me rephrase that, it's time for me to cook dinner. There are no gourmet meals in my home, it's quick and easy. Something that I can make in 10 minutes, that won't create too much mess. This is very different than it used to be, cooking is one of my favorite things to do, it's also one of the most difficult things for me to do now, I do it maybe once a month.

Dinner is done, cleaned up, and now it's time to do homework. My daughter averages about an hour to two hours of homework a night and we sit with her in case she needs our help, then I check her homework to make sure it's correct. Then it's bed time, and finally time for me to lie down or maybe not if there's laundry.

My husband helps me gather the laundry and get it started. Some days it's a two-day process, depending on how my shoulders, hands and feet are doing. My husband is awesome, I couldn't do it without him, and I am so blessed because I know so many handle everything on their own.

I finally get to lie down, but then I get to work. It doesn't really count as work which is why it's always done lying down at the end of the day. I'm an advocate, a health activist, a person who talks about Rheumatoid Arthritis. I have a Facebook page, a blog, I'm a volunteer and I talk to people with Rheumatoid Arthritis. I listen, I give advice when needed, but mostly I try to give Rheumatoid Arthritis and its patients a voice. This can take anywhere from an hour or two every night.

This is how I spend an average day, it doesn't include paying the bills, following up on calls, making appointments, lab work, x-rays, MRIs, hospital stays, surgery, reactions to medication, infusions, side effects from meds, my daughters music recitals, my husband's work, early morning meetings, grocery shopping, cleaning the house, going to the bank, buying stamps, vacuuming, or my daughter's counseling appointments. You'll notice in the things I mentioned here, not once have I mentioned any kind of social outings, there isn't a whole lot of extra time, much less extra energy.

This is a day in the life of a patient with Rheumatoid Arthritis, this is my life with Rheumatoid Arthritis...

I am participating in the World Autoimmune Arthritis Day 2014 Blog Carnival this is the first round of posts based on A Day In the Life of an Autoimmune Arthritis patient....please hang around for the next few topics...if you would like to check out other blogs about A Day In the Life, you can at Systemically Connected.

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