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Stop the World I Want to get off

Stop the World, I Want to Get Off

To say this has been a challenging winter for me would be a massive understatement.  Between health issues, the passing of our beloved dog, Leah, the intense winter we experienced here in Vermont, work-related stresses, etc., I could write volumes.  Suffice it to say that all of this is slowly but surely passing and there is great relief in that knowledge. 

I say this because there are moments, if we are honest we all experience them, when we truly want the world to stop so we can catch our breath.  Unfortunately, that is not how life works.  For those of us with chronic disease, we have an additional burden because in the midst of these unexpected challenges we are charged with managing our RA, day in and day out, never mind these crazy new obstacles!

So how do we do this?

Well, it takes stamina, planning and determination.  The first thing to understand is RA does not exist in a vacuum.  It is woven into our existence like a well-constructed fabric.  Despite the fact other matters are rising up and demanding our immediate attention, RA is never far behind and always needs to be attended to, no matter what is happening simultaneously.  This simple truth will be an important operating principle in managing RA.

For example, this past winter I had to undergo several lengthy and painful oral surgeries which took a lot of time and patience (sitting in a dental chair for hours is not my idea of fun).  So, that took its own course of planning just to manage what would be necessary to get through it.  Add to that, the RA elements.  Namely, sitting for long periods of time and how that affects me, how to handle the risk of infection with oral surgery, pain, etc.  Something as simple as the fact my jaw was locked open for hours ended up triggering an RA flare in my jaw!

In spite of plans…

The lesson here is that no matter what is happening in our lives, RA needs to be factored in, if we are going to get through it with any degree of success.  Otherwise, we ignore the RA at our peril.  I knew the possibility of a jaw flare was real and so when I went home I took steps to minimize it (ice, heat eventually, Tylenol, etc.) because I reminded myself that while other concerns may rise up, RA is never far behind.  The last thing I needed was a “surprise” flare courtesy of RA.  Just simply being aware of how the oral surgery might impact the RA, allowed me to plan ahead and relieve one less stressor.

The unexpected emotional stressors (like having to put our dog to sleep) are a little trickier to view through the RA lens for me.  I tend to think of RA in physical terms the majority of the time, putting the emotional aspects in the back seat.  But the fact is, my dog was a wonderful companion who eased the mental pain of chronic disease by always being at my side, giving me unconditional love, no matter what.  That loss was devastating and I needed to acknowledge that and see how best to weave that into my RA management.  It actually took more time and effort than planning for the oral surgery.  But over time, I realized how to deal with those emotions and get through the loss with the help of family and friends.

The bottom line is, that even when non-RA challenges surround us, requiring our full attention, we need to be aware of the part our RA plays in dealing with those demands.  If we do that, those challenges can be handled successfully.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Monica Y. Sengupta moderator
    1 year ago

    Oh, Nan, I am so sorry about Leah. I completely relate to the feeling the world is moving too fast.

    Very moving article!

  • cannonsplash
    1 year ago

    I hear you. I feel your pain. This has been a challenging year for me – my husband had a spinal fusion and that took alot out of him, but the same amount out of me. I had to take on all the work around the house and I still am, 4 months later. Plus I have a new position at work and it’s great, but very busy and stressful. I had a blood test last week and the rheumy called to say my inflammation markers were very high. I knew I didn’t feel well, but I’d been keep on keeping on. Fortunately I still have my 14 year old pup to keep comfort for both of us, but I know her time with us is short……..Sorry about your dog. So sad.

  • CarolynJ
    1 year ago

    I am so sorry for your loss, having to put your baby to sleep is the worst thing ever. I have 4 dogs and 2 cats, and an aquarium, this keeps my mind busy. I don’t think I’d make it through a day if it weren’t for my babies. But dealing with RA makes it that much harder to deal with me. If that is what I have. My medical doctor is sending me to a rheumatologist,because she’s pretty sure I have it. It seems like this just came outta the blue. I look back now and see there were signs, but the pain and swelling is unreal. I have fibromyalgia and hurt from it but in different ways. I don’t really have a support system, no spouse and kids outta state. My sweet mom doesn’t understand why I sleep so much or can’t get out and yard sale with her. I’ve tried to explain but she’s 79 and has a hard time understanding. Anyway again I’m sorry for your loss.

  • Monica Y. Sengupta moderator
    1 year ago

    Thank you so much for sharing, CarolynJ! Starting out on your RA journey can be scary and frustrating but I know, from personal experience, there is no way I could have gotten through the first few years without my 4 fur babies.

    I hope your rheumatology appointment goes well. I thought you might like this article: https://rheumatoidarthritis.net/living/what-to-expect-at-your-first-rheumatologist-appointment/. I also found journaling my symptoms, mood and activities helped me spot trends and possible problems along the way (I wrote this article) https://rheumatoidarthritis.net/living/keeping-tabs/

    Please know you can always reach out here if you have any questions or need support. All the best, Monica

  • Mantha
    1 year ago

    I can completely identify with everything you are saying. I am sorry about the loss of your pet. I have two cats that give me so much comfort, so I know that was hard for you. It is hard for my family to understand that on some days I have a hard time getting up and doing daily activities. I have had a UTI for going on two months. I had to stop my methotrexate injection because it interacted with one of the antibiotics. I have been off of it for a month and a half. I am having aches all over and that combined with all the meds for the UTI has made me very irritable and unable to deal with things. I know somehow it will be resolved, but I agree with you about stop the world and let me get off!!!

  • StiffHands
    1 year ago

    Wow I live in Upstate NY not to far from the VT border and you are so right what a brutal winter. I also had to deal with the loss of a pet as well who was part of my family for 15 years. My last comment is I still cannot get used to these flare-ups knocks me out for days and the swelling is beyond painful. I try to deal day by day hour by hour.

  • Monica Y. Sengupta moderator
    1 year ago

    Thank you so much for sharing, StiffHands! You are not alone in experiencing worsening flares during periods of grief.

    Stress and sadness both play a role in RA’s activity levels and I am really happy that you are staying positive and navigating the disease as best you can! Please reach out if you ever need to! ~Monica

  • elvis
    1 year ago

    You’ve done great! I have a dog that I love immencely, don’t know how I could get along without her, she is always there for me. The wife and children are always on the go. But the Puppy as I call “Lucky”, who we got from an out of state shelter? She is always with me and keeps me company and is always willing to nap with me, I nap a lot, lots of love!

  • Lawrence 'rick' Phillips moderator
    1 year ago

    Your bottom line is so well stated. For me, RA can overshadow everything. Even if it does not overshadow everything, it at least influences everything.

  • tryingharder
    1 year ago

    Nan Hart, thanks for sharing your story and reminding us that r/a is always there needing to be factored in regardless of our circumstances, and mostly I’m sorry for the loss of you precious pet, yours like mine are very much a part of our family, Lilly my oldest Maltese is very therapeutic for me, no matter how I feel she always loves and is by my side, I will ball like a baby when she goes to heaven, as I have cried for my other babies, that had to go away. My heart is with you and your loss, hang in there. Thanks again for sharing

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