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Chronically Grateful Rheumatoid Arthritis

What does gratefulness mean to you?

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Day 1 of the #ChronicallyGrateful challenge: What does gratefulness mean to you?
  
Gratefulness is having appreciation for everything around you. It’s especially important to me when things are rough. When the intense pain hits or the doctor’s appointment doesn’t go the way I would like it, it’s important for me to be grateful that I have insurance. To be grateful that I have a family to help me. 

It’s also appreciating the little things, like my JungleGeorge who knows that I just need him by my side, or my daughter volunteering to scramble me an egg at 11pm because I’m so incredibly nauseous from methotrexate. 

Rheumatoid Arthritis

1:00PM

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Today is Day One of RABlog Week! In case you aren’t following along, here is today’s writing prompt:

A day (or an hour) in your life – Pick a day, an hour or half a day and tell us what happens? Are you stiff when you get up in the morning? Tell us about getting ready to go somewhere, or going to a restaurant. Pick any unit of time and tell us what your life consists of.

Rheumatoid Arthritis is a tricky disease. Some most days you feel pretty bad at some point. Sometimes it’s predictable- I know that every day, around 1pm, I get what I call my “rheum flu”. Every day, without fail, I feel horrible at 1pm. My temperature goes up, fatigue takes over, every joint and muscle in my body seems to start to ache. I feel like I have the flu. No matter what I do- pre-medicating, up my caffeine intake, etc..it hits me like a wrecking ball.

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My rheum flu doesn’t impact me as much on the weekend. Why? Because I can nap! Every weekend I nap at 1pm..whether I want to or not, I physically need to. Even my cat waits at the bottom of the stairs and cries for me to come nap with him at 1pm. Without that nap, the rest of the day is a struggle.
On the other hand, my rheum flu, is extremely difficult to deal with while I’m at work. I work full-time and don’t have the ability to nap at work, unfortunately! I will feel myself jerking awake at my desk, aching everywhere, often fighting back tears from the pain and frustration. I feel completely helpless when it hits.
Rheumatoid Arthritis

Unpredictable

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After an evening of pain and irregular sleep, it was surprising to wake up this morning and actually feel ok. I didn’t have any major pain and was able to make breakfast for my family without feeling wiped out afterwards. I took my Meloxicam anyway. 

I ran errands with my daughter which I’m rarely able/willing to do because of either fatigue or pain. Nothing crazy- pharmacy, library, car wash, quick trip to the grocery store. I felt so great when I got home that I sat outside, listened to my audiobook, and enjoyed the Baltimore weather for a few minutes. I took a nap afterwards for about an hour, much shorter than usual! I dropped my son off to play basketball with some friends. Then I came back home. 

The minute I walked in the door, I knew it was coming. I sat my keys down on the counter and saw that my fingers were swollen. My hands started to ache terribly and both legs joined them. I felt like I had just gotten knocked down. 

What the hell? I didn’t do anything. I didn’t go run a marathon, didn’t clean the house, or even go to work. Why would pain come on so suddenly? 

I walked down to the basement to get the laundry, laid down on my husband’s weight bench, and cried. The pain was so strong and so frustrating. 

I always say that having Rheumatoid Arthritis is ten times worse than having Type 1 Diabetes. I don’t mean because of complications, life expectancy, medications, etc. Even though diabetes can is unpredictable, it at least gives you moments of consistency. You can at least assume that if you eat a Snickers bar, your blood sugar will go up (most of the time, ha!). Rheumatoid Arthritis has provided me with nothing even close to predictability. I have no idea what each day will bring. All I know is there will be pain at some point, in some capacity. 

HAWMC Rheumatoid Arthritis

Good Samaritan

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We love random acts of kindness. Write about a time that you benefitted from the kindness of a stranger, or a time when you were the one extending a helping hand. How did you feel? #HAWMC

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On March 6th, I had surgery on my wrist. In anticipation, my rheumatologist suggested I get a handicap parking tag. She said I should have one anyway, so I agreed. I took the application to the MVA and felt extremely self-conscious. I don’t look sick. I don’t use any assistive devices, aside from the insulin pump, aka my pancreas, strapped to my side.

Fast forward a few weeks post-surgery. In retrospect, I should have waited and had my husband or son help me at the store but being as hardheaded and stubborn as I am, I went on my own. I still couldn’t lift anything heavier than 1lb with my left hand, but that wouldn’t stop me. I parked in a handicapped spot for the first time and did my weekly Target run. Anyone that has a teenage son, a preteen daughter, and a hard-working husband, knows that a weekly Target run means a cart filled to the brim. It also means that the entire cart of food will be gone in three days, but that’s another story.

I managed to check out successfully and got to my car, which was in the very first handicapped parking spot. Despite the fact that my left arm was in a brace and that by that time, I was walking much slower because my feet were killing me, I still felt unworthy of using the spot. I popped the trunk and started putting the bags in, one by one, with my good arm. A man and his wife came up to me and offered to hold my cart so it wouldn’t roll away. They then offered to return my cart to the store and said they hoped I had a nice day. I thanked them and watched as they went into Target, put the cart back, and then came right back out and went to their car. They were done shopping but had seen me and stopped what they were doing to help.

Their gesture was small and to them probably didn’t mean much. But it did to me. It showed me that despite my perceived notion that people were going to judge me or find me unworthy of using a handicapped spot, this couple knew there had to be a reason to park there and didn’t assume anything other than the fact that I might need a little help.

HAWMC Rheumatoid Arthritis

Key to Happiness

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What do you think is the key to happiness? Is it being able to overcome a hard time? Laughter?
Maintaining a positive attitude? Tell us what you
think and why. #HAWMC 

I find this post rather fitting for me tonight. I would love to pour out how I feel about laughter and how it connects me to others and brings me great happiness.

The truth is, right now, when I’m in pain and exhausted, what makes me the happiest is changing into comfy clothes. Loose yoga pants and a hooded sweatshirt can do wonders for me. I swear they make my pain diminish just a bit as soon as I put them on. Could anything make me happier right now? I guess comfy clothes, in my bed, under a fluffy comforter, wouldn’t hurt! ?image

HAWMC Rheumatoid Arthritis

Wordless Wednesday

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First post of The Health Activist Writer’s Month Challenge!

Since this is the start of HAWMC, post a picture
that shows how excited you are for the next 30
days. We always love a good Health Activist
selfie! #HAWMC

Still sleepy, off to work, but definitely excited for the next 30 days of blogging!

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Rheumatoid Arthritis

As Good As It Gets

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Ever since I was diagnosed with Rheumatoid Arthritis, 3 years ago, I’ve had a burning question. A question that I’ve really wanted to ask but that I also really didn’t want to have answered:

“Is this as good as it’s going to get?”

Over the past 3 years I’ve been on different injectables, pills, creams, etc. Some are supposed to reduce my disease’s activity, others should take away pain.  Currently, my injectable, Orencia, seems to be working. I’m not noticing any new pain, stiffness, or swelling which means this medication should be reducing the disease activity in my body. This is a good thing. The only problem is that all of the damage done while I was waiting for a diagnosis years ago and all of the damage done a year ago when I was too sick to take any rheum meds, is just that, damage. It’s damage that I thought could be repaired. It’s damage that ,until I asked my rheumatologist that question, I thought was temporary.

During my most recent visit to my rheumatologist, at my usual 3 month follow-up, we discussed the effectiveness of Orencia and how we both thought we should give it a little more time to see what we can get out of it (I’ve had 30 weekly injections thus far). She then said, our goal right now is pain management and quality of life. Huh? That’s it? To me that sounds like giving up, so I had to ask: “Is this as good as it’s going to get?”. Is my elbow going to ever get better? Is it going to hurt for the rest of my life? Will I feel good enough to exercise one day and without reason, feel like I can barely walk from the car to my front door? Will I never sit cross-legged again because my left knee is so stiff? Will compression gloves and a knee brace be a permanent part of my bedtime attire? 

The questions poured out. I expected my doctor to sugarcoat things with lines like “we’re going to fight this”, “there are still plenty of medications we haven’t tried”, etc.  She didn’t. She said yes, my elbows would probably hurt forever. And my feet, hands, and knee probably would too. The damage was done before I was even diagnosed. 

In all honesty, her answers didn’t shock me but they definitely were a reality check. I’m 35 years old. I have a husband and two children. I have things I want to do and places I want to go. No amount of work or hope is going to change my joints but I can definitely change my mind-set. Some days are going to be hard, I’m going to need to rest, dinner will be thrown together, and that’s ok. Other days, I’m going to be dancing in the kitchen and making my children laugh hysterically while I attempt to rap. 

I’m hoping for more kitchen dances. 

Rheumatoid Arthritis

And Then There Was One..

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✔️ Physical

✔️ EKG

✔️ Bloodwork

 

One week from tomorrow, I’ll have surgery on my left wrist. I eventually need to have nerve release surgery on my left elbow and my right wrist, but I’m starting off slow. I’m right handed so this shouldn’t be too big of a deal, right? Uh, wrong. All I can think about are all of the things I need two hands to do:

  • Blow drying my hair. Yes it has to be dried every morning. I don’t have that wonderful type of hair that can just be pulled back into a ponytail (which, I should add, I wouldn’t be able to do any way because you need two hands for a
  • Eye liner. Should be really fun trying to hold my eyelid and use the eyeliner with one good hand. Suggestions appreciated.
  • Parallel parking. I do this every single day at work. Or, I used to.
  • Putting my contacts in. This should be a treat. Thank goodness they’re daily disposables.
  • Getting dressed. My bra, buttons, you get the idea. It’s not like I can wear sweats and sneakers every day. I couldn’t even tie my own shoe!
  • Managing my Type 1 Diabetes- pricking my finger, inserting a new infusion set. Ugh.

 

There are some bright spots though. I’ve thought of some things that I won’t be able to do and I’m looking forward to not doing them:

  • Grocery shopping. Push a cart with one hand? Not a good idea.
  • Cooking. Definitely going to need help with this one.
  • Dishes. Can’t really hold a dish and wash it with one hand, right? Especially while my stitches are in and I can’t get them wet.

Have you ever had an injury to your arm? How did you complete your normal activities? Any suggestions would be much appreciated!

Knitting Rheumatoid Arthritis

The Worst Part

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Rheumatoid Arthritis sucks. But lately it’s not the constant pain and swelling or the overwhelming fatigue that’s got me down. It’s that RA is keeping me from doing things for other people. That makes me mad.

I love loved to knit. You wont find many of my knitted projects in my house. Why? Because I enjoyed knitting for others. Baby blankets were one of my favorites. I loved picking out bright, non-traditional colors of yarn and working them up into a soft, beautiful blanket. I love hearing from friends and family, years later, about how much their child loved the blanket from day one.

And then there are prayer shawls. I made my first one nine years ago when my Uncle died unexpectedly. I needed to do something so I started knitting. My Aunt wrote me the most wonderful letter a few weeks later telling me that my cousin, who was 8 at the time, had been falling asleep with the shawl every night since his Dad’s passing. Fast forward to less than a year ago when my Aunt was diagnosed with cancer. She texted me that the prayer shawl had been with her, in her bedroom, for all of these years. Now that she was facing another battle, she was using it more than ever. I can’t explain what it meant to know that something I made was cherished year after year.

My second prayer shawl was made for my dear Aunt Melanie. My Aunt Melanie was diagnosed with Stage 4 Lung Cancer in the Spring of 2013. Again, not knowing what to do, I started to knit. I thought of all of the colors she loved and surrounded herself with and made sure my yarn reflected that. I wrapped up the shawl and put it in the mail to her in Virginia. I was unprepared for how much my Aunt would come to love and depend on that shawl. My Aunt wore it nonstop..she would text me and tell me she had it on at chemo and again to watch football on the weekends. She absolutely loved it. My Aunt Melanie fought a short but courageous battle with cancer and passed away in November, 2013. She passed away wearing my shawl.

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I think of knitting daily. I started knitting square blocks a few months ago, in hope that “little” projects somehow wouldn’t cause me as much pain as larger, heavier ones do. Every week or so I’ll pull my knitting basket out (which makes my cat ecstatic) only to find that nothing’s changed…my fingers fall asleep holding the needles, my hands and wrists ache after just a few stitches. And now knitting is 100% out until mid-November at least, since I have a ligament tear in my wrist.

I feel guilty that I’m not knitting. I have two people, who immediately come to mind, that I would love to make prayer shawls for and plenty of babies that I would love to go yarn shopping for. As each week month goes by, I lose a little hope that I’ll ever knit again.