Friday, July 12, 2013

Living with a Chronic Illness

About eight years ago I was diagnosed with Rheumatiod Arthritis and Ankalosing Spondalitis.  While it was nice to finally have a name to the constant pain it was a long road to finding what would help me.  Medication after medication, side effect after side effect until finally we found one that works for me.  I also found that the food I eat makes a huge difference in how my RA affects me on a daily basis and have learned how to read food labels for those ingredients that are hidden by calling them something different.  And now I only need an injection once a month instead of once a week and sometimes I can even go as long as six weeks between injections.

(on a side note- it is a very expensive medicine and my new insurance doesn't cover it.  Except I was on the phone with the insurance about something else the other day and asked why they didn't cover this.  Good news!  They will cover it if my doctor will write the order for it as a medical procedure-injection instead of as a prescription! Weird because it is the same thing, but whatever)

There are many people that just don't understand what it means to live with a chronic illness, especially when it is one that has no outward signs.  I look normal, am active, do things go places and my fingers are not gnarled and crooked.  So I thought I would talk a bit about what it is like to live with RA.

Stats are from Bristol-Myers Squibb

*Over 80% of moderate to severe RA Patients have trouble opening jars.
 Oh, this is huge.  I actually chose what I cook based on if I have to open a jar or not and if someone is home to open it for me.  There have been times that I have picked something up and my hand has just refused to hold on to whatever it was and I have dropped it.  When I worked at Target I once dropped a dozen eggs.  Embarrassing.  Opening cans is sometimes tricky as well.  The company OXO sent me some products to try and one of them was a can opener and I love it!  The founder of OXO made this line of products because his mother has RA and couldn't always eat what she wanted because she couldn't open things.  I also have their vegetable peeler and am not even sure where all my others are.  I am slowly replacing things in my kitchen with their items. 

*Over half of moderate to severe rheumatoid arthritis patients find that RA impacts their ability to take care of their families, household, and social activities.
True.  I was so glad when Brandi could finally start doing her own hair because it takes hours and hours when it is long and by the time we were through I would be in tears with pain in my hands and back.  And the things that I do on a daily basis are determined by how much pain I am in- and I am in pain every. single. day. without fail.  It is only the level that varies and determines what I do.  Spring cleaning? Muck out the garbage from my house? Scrub down the cupboards, walls, baseboards and windows?  All things I want to do but all things that take so much energy that I am exhausted and in so much pain by the time I am only 1/4 of the way done that I end up in bed crying having taken major pain meds to just deal.
Go to the pool, the park, the amusement park, or any of the other things on our list of things to do as a family?  I want to, but it depends on how I feel that day.  Such disappointment for my children.  And there are times I grit my teeth and go anyway, but it is no fun for anyone because the kids can tell.  Even when I am eating extremely well and really being careful and feel great, I am still in pain and it still exhausts me. And now that the kids are leaving the house and I have less help, I am going to need to find something smaller and easier to take care of.

*Though the main symptoms of RA are pain,stiffness, and fatigue, the disease has a greater effect on the patient. Many people don't even think about the stress that comes with dealing with the pain or the limitations that RA places on your everyday schedule. But they can have just as great an impact on your day-today living as your symptoms do.
I dress depending on how I have to do up the garment. I have fewer and fewer outfits that have buttons or zippers up the back.  Shoes are another thing.  How long do I have to stand today?is the ruling factor in determining which shoe I wear. The next is how high is the heel and it is rarely over 1.5 inches.  Once in a while I will wear my favorite pair of heels but I always take a pair of flats to change into.  
Chairs are a problem as well.  The AS (ankalosing) is in my back and tail bone. Sometimes after sitting for extended periods of time, especially if the seat is not padded, it takes all my energy just to stand up.
And going out with friends or to get togethers is always a concern because food is an issue for me.  What if there is nothing I can eat without having pain the next day? Do I pretend I am not hungry, eat and hope the pain is not too bad, or what if what I choose has one of those hidden things, or do I grill the waiter, preparer about what the food is made with/in?  There are times I can tell within 5 minutes of eating something that I shouldn't have eaten something.
I think I have gotten it down finally, but it is still hard and stressful.

Some tips Bristol-Myers Squibb give are:
*Keep more than one vacuum in the house so you can leave one on each floor. Yep, there are times that vacuuming doesn't get done because I can't carry it either up or down and there is no one there to do it for me so the only vacuuming that gets done is wherever the vacuum is.  That is also why I have assigned it to someone else.

*Watch the weather.  While I am so excited for the rain we have had this summer, it has really limited my activity not just because weeding and yard work is not pleasant in the cold rain, the pain level increases making the exhaustion level increase as well.  

*Take your time with big tasks. Set a timer and take a break and come back to the task.
This is the real reason my house isn't done being de-cluttered.  I can only do so much before I have to stop. And if I want/need to do something with the kids later in the day then my simple task may take me 2-3 days.

*Over 75% of moderate to severe RA patients find it difficult to wash their hair and get dressed in the morning. I already talked about getting dressed.  Washing my hair is not too much of a problem. My problem is styling my hair.  Anything that causes me to have to raise my shoulders for extended amounts of time is a problem so using the blow dryer, curling iron or hot rollers has to be done in stages and I have to take breaks.  So why am I growing my hair long again?  Mostly because I want to and refuse to give in.

*RA is an autoimmune disease.  The immune system mistakes the body's own cells for a foreign invader and launches an attack.

*Over 80% of moderate to severe RA patients have difficulty getting in and out of bed. I have a really tall bed.  I need a small step stool to get into it.  And I love it.  If my bed was closer to the floor I think I would have a problem.

*Over 80% of moderate to severe RA patients find it difficult to climb stairs.  Sometimes.  Another reason I am going to need to move soon.

*over 75% of moderate to severe RA patients have difficulty taking a walk with their child.  I walk. A lot. And quickly because I refuse to give in.  But there are days I just don't want to.  I do yoga almost every morning and try for three nights each week.  I will keep this at bay for as long as I can.

I refuse to give in. The doctor told me that the year I was born that most people with my diagnosis were dying by the time they were 50, the age I just turned last month.  And if they didn't die then they lived limited lives.  I refuse to do that,  I will walk, run, play, dance and have fun.  I will take care of my home and family and enjoy it.  It may take me longer than I want and my house may not be as sparkling as I would like, but just give me time and I will get there.

Now I am off to finish a task I started earlier.


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