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An Honest Account of My RA

My update is not pretty, nor hopeful and probably unnecessary, Yet it is honest.

I  feel like a photograph of myself taken from far far away.

Halloooo people whom know!

I have not been suffering form RA for very long…hmmm….just over a year. These are my thoughts thus far.

Before you peruse my post please consider how you are feeling as this is not a post about jumping over rainbows and riding unicorns. 

This post is real.

Raw.

No holes barred….
Let me begin…

Warning to people who my be offended by offensive language….There will be some in my post so please proceed with this knowledge…or not.

RA. It’s sh*t. What does sh*t mean….

Sorry, rhetorical…I feel as though I am walking through mud up to my neck. 

I feel like a photograph of myself taken from far far away….

Every movement determined by how vicious the said mud is. 

Brain fades. So many brain fades

Shamefully…. yesterday I could not remember the name of this lovely girl. I had been with her on many occasions yet her name escaped me.

I knew her face…..it is one of those faces that many remember.

I feel like a photograph of myself taken from far far away….

I remembered her body shape as she is very tall and slim…yet her name?

What is her name.

Her name was/is Olivia Darcy Gadd.

She is my 22 year old glorious, smart, beautiful kind human…..that I gave birth to.

I forgot my daughters name that shameful day!

A photograph that was taken in, perhaps the 1980’s. When I was a teenager, brown from the surf and sun here in Australia….when life was simple. When we ran with the wind. Ran into the wind…yet run we did.

Moving forward to the 90’s….two babies….running a sheep and cattle farm…

One child on my back the other running alongside his Mum.

Up hills, chasing, chasing sheep.

Laughing until our belly’s hurt as we tried to mob them up to run back to the shearing shed.

My eldest saying..’Mum We really need to get a dog that has two good eyes..( our favourite sheep dog was partially blind and I refused to put him down

Leaping over the rocks and stones in the Murray River, chasing Carp…our beautiful babies laughing as we slipped and slided.

Doing pottery on our farm delighting in what my hands could create in the days before RA…

Being astounded when a pot or cup actually looked like a cup or pot. 

Teaching my two beautifuls to do the same.

Fast forward to now…

I feel like a photograph of myself taken from far far away.

Watching my children’s father and two grandchildren chasing sheep

Watching from my chair as they carrol the sheep, and cattle into the yard…

Watching in amazement as my son makes, kneads, folds and rolls handmade garlic bread to accompany the dough he made for the pizzas.

Watching his hands.

So beautiful.

Wishing I could help

I feel like a photograph of myself taken from far far away. 

Watching my son pick up his daughter and show her how to open the gates the for Nanni…… Cause Nanni has sore hands…

Feeling useless yet at the same time revelling in my granddaughters feelings of self importance as she ‘helps’ Nanni.

I feel like a photograph of myself taken from far far away.

RA is sh*t. My RA is sh*t

Yes there are a few things I can still manage.

There are many more I cannot.

Insomnia is a beast.

Early morning confusion/brain fog is difficult.

Driving small distances is painfilled.
On it goes….

This is not a pretty story. 
This is not full of hope.
This is how it is for me.

RA is sh*t

This is my reality.

I am 52 years young.
I feel like I am done.
I feel like a photograph of myself taken from far far away

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

  • Mafalda
    3 months ago

    Thank you, Kathy, for your very honest story. This is one of the reasons why I joined this site: to read realistic accounts of daily life written by people who are struggling -as I am- and find out if they are doing anything that might help with my own fight.
    The other reason why I joined this site was to learn about any recent scientific breakthrough and/or ideas to improve our living conditions.
    I’m not one for fad diets, miraculous ingredients, fairy tales or rosy ‘feel good’ stories. This disease is what it is and I’m a practical, strong, determined individual, so I’m surviving it no matter what and because there’s no other acceptable alternative.

    You asked about our experience with problems or difficulties pre or post RA/RD. Here is, as briefly as possible, my story:
    I was diagnosed with RA/RD and Fibromyalgia in early 2015, although I had had symptoms (that were systematically dismissed by Drs.) since the mid-90’s. By 2002 I had done enough research to determine I could have either RA or Lupus, but I was again dismissed by my young PCP, who also missed the elevated RF in lab results.
    My main complaints pre-diagnosis were: fatigue and stiffness in the morning that increased over the years; fingers and toes turning pale with temperature changes (Rainaud’s); feeling unwell for unknown reasons; neck and arm pain, often with tingling in fingers; lower back pain extending to the legs (not always Sciatica); swollen/painful lower legs upon standing or walking for some time; high anxiety; an ever worsening depression (it lifted completely after 12 years when husband abandoned the family); obesity (after 8 years on antidepressants and decreased mobility); IBS; a reticulated pattern on/under my skin in colder temperatures; very itchy, leathery shins (this came and went over a few years), and possibly a few others that escape my mind at this time.
    Since 2015 I’ve been diagnosed with RA/RD; Fibromyalgia; degenerated disks and vertebrae in cervical and lumbar regions; some type of Rosacea; Pseudo-gout (calcium cristals in joints); Sjögren’s; CPTSD; anxiety disorder… plus the pre-existing Rainaud’s.
    (In 2015 I underwent weight loss surgery and lost the extra 110 lbs. in 10 months, down to a trim 134 lbs. It lowered my BP and high cholesterol to healthy levels and eliminated the leg swelling).
    My short-term memory isn’t what it used to be and I have trouble concentrating on a single task at the time. I’ve always loved doing research, but reading a page now has become a difficult task, as my eyes wander up and down or I read the same paragraph several times, unintentionally.
    My hands and wrists have lost strength and grip. I used to do intensive home remodeling and gardening, no task was too hard for me, and now I can’t fathom doing any of that. I struggle to carry grocery bags, open jars, separate the sides of a zippy bag, or lift a skillet, to name a few.
    I’m embarrased to say that deep housecleaning has became a thing of the past and I only do spot cleaning when able to do so.
    My daily ‘active’ hours have been reduced significantly since I must spend the morning in bed and cannot get up until 1-2 pm. or later in the worst days (specially if I went out the previous day or I’m feeling overly stressed). But I don’t have the luxury to stay in bed since I live alone now.

    I’m a young, outgoing 58 y/o woman. I had to rethink my life and get a fresh start a few years back, in difficult circumstances. My Drs. haven’t been able to find the right medication cocktail in the 4+ years since my initial diagnosis, as new, painful conditions keep showing up. I’ve unsuccessfully tried countless pain meds and now go to Pain Management. I’m resilient and will keep going no matter what life throws at me, but I only wished they could find a cure for at least one of my problems.

  • Kathy Costelloe author
    3 months ago

    Hey Mafalda,
    Thanks for your reply. I’m sorry you have and continue to suffer so much. I’m very interested in the conditions and or the various physical and emotional difficulties you had pre-diagnoses. I wish more people would list them. I’m fin dying, in the few I have read thus far, lots of similarities.
    Again, thanks for taking the time to reply to my question. I hope as you read this that your day was as you would have liked it to be. Go well and gently, Kathy

  • Tamara Haag moderator
    3 months ago

    Hi Mafalda,

    Thank you so much for sharing your story with us! As you say, it is helpful to read the experiences of other people with this disease, as it lets us know we’re not alone and allows us to learn from one another.

    Should you want to submit your story on our Stories page, I welcome you to do so https://rheumatoidarthritis.net/stories/

    Thanks for sharing your perspective and bit about your journey with us!

    Wishing you all the best,
    Tamara

  • Lynsey73
    4 months ago

    Your story is brutally frank and very truthful I wish I could tell you it gets better but I’m so sorry I can’t. I’m 45 with 2 sons 10 and 15, I’ve had this b*stard of an illness for 2 years and your right its sh*t. Try to make the most of the good days and bollocks to the bad. My prayers are with you. Xx

  • Kathy Costelloe author
    4 months ago

    Hey Lynsey,
    Thanks for taking the time to reply to my my post!
    I am so glad you are keeping it real. Am not into platitudes and such….yeah there are positives and I am great full each day for the ‘good’ stuff. I guess for me it’s about most things in life being relative.
    Like if you are having an awful day…you are having an awful day…And yes we all know ‘things could be worse’ (so tired of hearing this!) . This is where everything is relative comes into my world and my thinking.
    It can be easy for those of us that do suffer to dismiss it by others…meaning well (?) suggesting to us….’things could be worse’….Never, ever dismiss or diminish how YOU are feeling.
    I really hope as you read this that you are feeling better than ok….
    Go Gently,
    Kathy XX

  • Introvert
    4 months ago

    Hi Kathy,
    I appreciate your honesty and courage in writing about a difficult topic. My experience has been that trying to ignore the negative or sugar coat it just drives it down deeper until it starts erupting at inconvenient and/or embarrassing moments.
    Seems like there is a preference for not sharing the dark, tangled and frightening places. I’m all for finding the gratitude, but I need to dig down and uncover it first.
    For me, I prefer to sit with it, feel it, acknowledge it and then move on. Writing it out or drawing it helps. Once it’s down on paper I find it easier to let it go or at least cope better for a while. I throw away the paper and with it my grievances for that day. I call it my ‘trash can diary’ since I never keep the writing/drawing or the negative stuff expressed there.
    Nice to know there’s someone else who has a similar approach.
    P.S.I like your creative writing style.

  • Kathy Costelloe author
    4 months ago

    Hey I Introvert,
    Firstly I like you name :)….secondly thanks so much for taking the time to read my post AND to reply!
    I looked online for anything to reference how I was feeling Re the RA stuff….could find nothing. Hence it made me feel more alone and ‘weird’….so figured I could write something myself…so I did…and here we are.
    Your reference to my writing style is noted and very much appreciated! I try! It’s important to me.

    Go well,
    Go Gently,
    Again, many thanks
    Kathy. X

  • Kathy Costelloe author
    7 months ago

    Hello all,
    I am wondering what sort of things people with RA experience that is not a ’known’ problem or difficulty to do with your RA?

    Things YOU feel are directly related to it.

    Perhaps they are things you noticed were happing some time before your diagnoses That YOU feel may be related to the RA.

    Perhaps it’s things you are experiencing since your diagnosis.

    Whatever it is, no matter how small you may think it is, I would like to hear about it if you would like to share it.
    Thanks for taking the time to read this.

    Kathy.

  • JBehr
    7 months ago

    This is very true for many people. I’ve had the crud RA for going on 15 years. Learning how to do things differently was the hardest for me. Watching others do.things still kills me to this day. I’d like to tell you it will get better but that wouldn’t be totally true. You will have better days and shit days just remember that there are people out here to talk to and get advice from never feel like your alone in this. Keep smiling and enjoying those grandkids

  • Kathy Costelloe author
    7 months ago

    Hi Jbehr,
    It is hard watching others do things totally agree!
    Thanks for the honesty re things getting better.
    I get that insight sitting in the RA department with people at varying stages of the disease.
    I am still learning about RA and its effects. Trying to focus on the things I can do, as there are many. Yet it seems the human condition is to, at times, only see the things we cannot do.
    I’m learning a new way to live. I may not like yet it is what it is!
    I often don’t know what I can no longer do until i go to do it!
    Thanks for sharing your thoughts. I really appreciate hearing from all you “long termers”. I learn do much. The real stuff. Not the stuff from books!
    Go Gently,
    Kathy.

  • Danny777
    7 months ago

    I have an RA drug that is working; walking without a cane, doing yard work…it’s great. But I have sores on my legs and shoulders – pencil sized wounds…some have started going away others are starting. They are from the same med it have instigated another autoimmune disease – I forget the name.
    My close friends told me to go on disability, “Dan, I sent you the same email 5 times…you requested it again.” We cannot afford for me not to work.
    Your comments on brain fade…same. I forget to put the car in park…I have a neuro guy trying to get some brain testing done – yes thought early onset of A, on a med to try to stop what the neuro guy thought was “no headache migraines.” Couldn’t drive – happened on a business trip. Happens a lot – can’t figure out – how to start the car.
    Your article and a lot of the comments are valuable.
    I see this like what must happen to models…they are earning good money based on their looks which fade. I earn good money based on my mind.

  • Kathy Costelloe author
    7 months ago

    Hi Danny777,
    Thank you for your thoughts. I’m sorry to hear about, well everything! Particularly the sores you mentioned. Have read of this happening with RA. So many ‘other’ things going on with our bodies. I have severe bouts of Burstitis with the Drs are dived about. Some say there is correlation between RA and burstitus some say not.
    At present I have inflamed tendons in by feet and am unable to walk! That’s this week. It’s ever changing. I really liked and grinned at your reference to mories, looks, you and your brain!
    I woukd like to hear where things go with your memory problems and the sores. If you feel like sharing when you are able that woukd be great.
    Go Gently. Kathy

  • Amanda Kohl
    7 months ago

    Kathy, your article spoke straight to my soul as if it was written for me! I cried with the feelings and similarities. “I feel like a photograph of myself taken from far away” is the best description of how I feel. It’s taken quite a few years in counseling to learn to accept my limitations, I’m actually still working on that part, but I have learned to slow down and appreciate my family and the beauty in the life we share. But I do feel like I enjoy it from afar rather than participating in most things. I want to dance and run with my grandkids, I want to hike with my family to the top of the mountain or down to the river in our backyard. I hate that my granddaughter knows to open the gait and to slow her steps to wait for me. You’re absolutely right,RA is sh*t!!! Thank you for putting such profound, eloquent words to our thoughts and feelings!

  • Kathy Costelloe author
    7 months ago

    Hello Amanda,
    Thank you so much for your beautiful words. It so wonderful when we can relate to someones thoughts and feelings!
    Photograph comment is taken from a song. Saw a woman live and it resonated with me as a 30 year yet for very different reasons!
    I hadn’t considered seeing someone in relation to learning acceptance of this new way if being. So thank you for mentioning this! Learning f from others…how wonderful!
    Thabks again for taking the time to read my blurb and then leave a reply. :).
    Go Gently. Kathy

  • Kelly Dabel moderator
    7 months ago

    So glad this was helpful to you Amanda. You are not alone in this. We really appreciate you taking the time to share your story and experience. How observant, tender and sweet your granddaughter sounds. Sending gentle hugs your way. Thank you for being part of our community. Best, Kelly, Rheumatoidarthtis.net Team Member

  • Nene
    7 months ago

    I can relate. Before I knew what was going on, I would forget coworkers’ names. I’d take a quick look at their name badge, say their name in every sentence, pretend I was having a “senior” moment. I’ve lived in denial for a long time that something wasn’t right. I’d step up to my cash register or computer, & couldn’t remember how they operated or how to perform common tasks. I thought I was getting the onset of dementia or Alzheimer’s.

  • Kathy Costelloe author
    7 months ago

    Hi Nene,
    It can be really frightening when it starts to happen its not something that’s talked about, I’ve found, with RA. That’s why I think this site/community is so important. The medical have vast knowledge of course yet its the day to day lived experience of RA people that I learn most from.
    I think your self taught trick of seeking out the name tag is clever, nice work!
    Thanks for your reply.
    Go Gently. Kathy

  • Kelly Dabel moderator
    7 months ago

    Thank you for sharing your experience Nene. I hope that this helped remind you that you are not alone here. Wishing you the best, Kelly, Rheumatoidarthritis.net Team Member

  • MissBeki
    7 months ago

    Kathy, thank you for opening up and sharing. I understand and empathize. Your honesty is refreshing, even if it is about the harsh RA reality. It always strikes me as a curious observance, that many people with RA are artists of some type. So, years of building skills upon experience go down the drain with deformed, weak, painful hands, feet and other joints. And if you can manage to find the time to do a little artwork, because your soul can’t survive without creating something, by the time you get everything ready and set up, you are exhausted. Maybe tomorrow, not in the morning. I wish you healing and joy in little pleasures.

  • Kathy Costelloe author
    7 months ago

    Hi MissBeki,
    Thanks for taking the time to read my short true story! Especially thanks for reminding to get back into some form of creativity! I am very fortunate with the RA. I can still do most things.
    I am left curious now as to what kind of creativity you enjoy?
    Be kind to yourself.
    Kathy.

  • Kelly Dabel moderator
    7 months ago

    Thank you for commenting and giving your feedback MissBeki. So glad this was helpful and refreshing to you. Love your suggestion to make space for creativity through art. We appreciate you sharing and being part of our community. Best, Kelly, Rheumatoidarthritis.net Team member

  • Jforsyth
    7 months ago

    Dear Noelene,

    Can you tell us which antidepressant is specifically for RA? I am not familiar with anything other than Cymbalta and Lyrica and I am wondering if there is something else out there.

    Thank you kindly,
    Jana

  • Kelly Dabel moderator
    7 months ago

    Hi Jana, I wanted to respond to your question you posted to another commenter. A great place to start is to speak with your doctor about your options. In addition to speaking with your doctor, this article may be helpful to you: https://rheumatoidarthritis.net/mental-health/coping-medications/. Hope that helps! Best, Kelly, Rheumatoidarthritis.net Team Member

  • Noelene
    8 months ago

    Dear Kathy,
    Try to persist, and stay positive. Ask your GP about antidepressants – the one that I am on specifically assists those of us with RA.
    It took 19 months for my highly respected rheumatologist to find the correct medication cocktail to control my pain.
    Be proud of small victories. In 2015 all I could really accomplish was to shower myself, and put on my knickers. My husband took over running the house and caring for me. Sadly he passed away in 2018, but now with family support I live alone and care for myself. Getting mobile again has been a battle due to muscle wastage from prolonged inactivity. Yes, everything is done slowly, and I have frequent rests. But life is again worth living.
    We Aussies are battlers. Enjoy your grandchildren, and be proud of all that you have achieved in your ‘healthy’ years.
    Noelene

  • Kathy Costelloe author
    7 months ago

    Hi Nolene,
    Firstly my phone kept auto correcting your name to Jolene, so now I have that song stuck in my head!
    Thanks for your comments I appreciate it. To remember to celebrate the small victories. :).
    I’m sorry to hear you lost your husband, sad news. So glad you have support and are managing on your own, that’s great news!
    I have had a script for anti D’s for 3 months now….I must get it filled!
    Thanks again and go you living on your own!
    Go Gently. Kathy

  • Jforsyth
    8 months ago

    Dear Kathy,
    You read my mind! I love this online community for the positivity and the tidbits that help, but I feel you. I find it difficult to get past the fact that I used to run marathons, teach spin classes, and take my dog to the park. I am not sure how I got here, but I am here inside “a photograph of myself taken from far far away”.

  • David Advent moderator
    7 months ago

    Hi Jforsyth, we’re glad you love this online community, and we thank you for being a part of it! I feel you on remembering things that I could do (and now no longer can) before being diagnosed; it’s so difficult but I think of it as an open door to try new things. Thank you for your comments and for being a member of this community! -David (RheumatoidArthritis.net Team)

  • Kathy Costelloe author
    7 months ago

    Hi JForsyth,
    I’m hearing you on not knowing how you got here! I saw a lady recently whose life went from go to stop in 3 weeks!
    Thanks for your comments about the honesty of my post. I was a little nervous about it. I didn’t want it to be negative. There are just times when pretending is just not helpful.
    Hard for the people around me also. I ‘look normal’ and some of the time feel ok. Yet when I’m not ok, I’m really not ok. I wish there was more talk of RA mainstream. I may just have to get a video camera and change thst!
    Take care of you. Kathy

  • BettieAcks
    8 months ago

    I am from the city and always wanted a farm, so when my husband retired we sold our house and moved to almost 15 acres in the mountains. I love where we live and I started to take in rescue farm animals. I am also a wildlife rehabilitator and I was saving the little baby birds and squirrels and others and I was buzzing along, happy as a clam and loving life. One day my hand closed shut and I couldn’t get it to open. I had a bad knee and was getting injections in it. I went for my injection and I asked my doctor what did she think about my hand, She said because of where I lived and the woods and all that maybe I had Lyme Disease, She said go down the hall and get a blood test and I will call you. She called me the next day and told me I had RA. I didn’t even know what it was. She gave me a prednisone pack and I got all ambitious and painted the outside of the house and was having a merry old time. Then the pain came, like I had never known in my life. I went to an RA doctor and she had me get a flu shot and a shingles shot and I waited three months for some pain meds, She put me on Methatrexate and it took a month to start working, It worked for two months and stopped. Then I got Embrel and it worked for four months and stopped. Then I got Humira and it worked great for a year and then I went to have my first knee replaced and I had to go off of it. After my surgery I went back on it and it didn’t work. So I went and had my other knee replaced three months later. Meanwhile I am on Prendisone for the pain. After I got better and went for my appointment with my RA doctor and she said she had some patients who were doing well on Xeljanz and would I like to try it. I was willing to try anything, so I started taking it and it has been wonderful for five years now. It is like I don’t have RA and I have no RA pain at all. So on Saturday I was outside with my husband checking the fence line because the fields are starting to green up and I wanted the goats and sheep and donkeys to go down and be happy because spring was on its way. Suddenly I felt like my heart was going to pound out of my chest and it scared the crap out of me. I went inside and sat down and felt better and then on Sunday it happened again and we went to Urgent Care and 10 minutes later I was in the ambulance. My blood pressure that is always normal or low was 191/163 and I was in trouble. Off to the Emergency Room at the hospital. They admitted me and did three days of all kinds of tests. And guess what, good old RA struck again and scarred my lungs and it is called Pulmonary Fibrosis and it is fatal, 3-5 years or less. Now I have to go to the lung doctor and see how much damage is done and how long I have to live. Isn’t that just wonderful. Honey, my heart bleeds for you, because I know your pain. I don’t know what meds you are on but maybe you could try Xeljanz, maybe it would help you. Best of luck to you.

  • Kathy Costelloe author
    7 months ago

    Hi BettieAcks,
    Thanks for your reply. Wow what a journey you have had! I appreciate all the meds info, what’s worked and what hasnt..it so helpful as I then become an informed patient.
    I loved how you described the goings in at your farm re the animals….I coukd visualise it. I’m not on farm now. Have moved to a warmer part of Australia closer to my children and grandbabies.
    Sorry to hear whats happening with your lungs. That’s scary! I really hope things go well for you. The animals need you to be you!
    Take care and thanks again. Kathy

  • Julie C.
    8 months ago

    Dearest Kathy,

    I read your story from start to finish with tears streaming down my face. Minus the “beautifuls” in your life, you have written my story too.

    I have been a reading articles from this group for close to 4 years now. Your contribution is one of the first I have so deeply connected with, it is so, so very similar to my own struggle. 7+ different Biologic trials (plus a couple DMARDs) later and the passing of years only continue to bring further decline.

    My sh*t commenced when I was 43. Who would have ever guessed a once productive life could change so much, so quickly?!

    I cannot thank you enough for taking the time to articulate your experience so bravely and contribute your story to this forum. Thank you for helping me feel less alone in the battle. I wish you calm, peace, and any semblance of relief that is possible.

    Please take good care, ~Julie

  • Kathy Costelloe author
    7 months ago

    Julie,
    Wow, Thank you.
    Your comments made me cry, so now we both have leaky eye syndrome!
    I so moved that you were moved, seriously. It make me want to keep writing.
    43 is so young to have this crap start. Difficult to in the context of having lived your life a certain way by then perhaps even have plans and future dreams. Then in one fell swoop It all changes.
    I’m sorry that you suffer.
    I’m glad to have connected with you.
    Go Gently. Kathy

  • qejm0g
    8 months ago

    Hi Kathy..yes RA is ***t. I too like calling it as I see it. Thank you for getting this out there as many will relate.
    I have been where you are too many times. I have been giving up so much of my late 40’s to mid 50’s to the worsening of my disease.
    If I’m reading your post right..you’re in a very dark and discouraged place. I hope by posting your article you will move past this place-you’ve acknowledged it as a current state of being now perhaps you will be able to work thru and past it to know you’re not done. You add value to your family in ways that won’t be obvious to you for a while. You’ve added value to this online community by your post. You are NOT done. My signature on my email is a quote by Victor E. Frankel..When we are no longer able to change a situation, we are challenged to change ourselves. I hope that you accept the challenge to move toward a brighter place and thus begin to change the outlook you have yourself. You do matter and are not done yet!!
    With as much love as I feel for you now and can send thru the internet to you from me,
    Denise

  • Kathy Costelloe author
    7 months ago

    Denise,
    Wow, thankyou.
    Beautiful words and insight. I appreciate it. I have found posting in here helpful. Mostly words and the connection of the to and with others is what drives me. I am feeling a bit ‘clearer’. Historically I have been very adept at accepting the things I have little control over. Working with what I have ect.
    You are very kind. Thank you.
    P.s I love Victor E. Frankl’s work!
    Go Gently. Kathy

  • keeppushin
    9 months ago

    Ah dear Kathy… I totally feel you on this. I’ve known I had RA since I was in my 20s. Just refused to accept it. Until one April day in 2012 or 2013… when I couldn’t even get out of bed. After crying and trying for 2 hours I finally made it to the couch in the living room and sat in depression and remorse, hating what I knew was happening. My first flare up. And it came with a vengeance. Not one part of me didn’t hurt. I pictured myself in a wheelchair, my children having to do everything for me. Feeding me, dressing me, bathing me. And I cried. Then I cried more. And I sat in that one spot on my couch, seemed like an eternity, and I cried. Then I got angry. I’ll remember that day for the rest of my life. Had my first full fledged flare up and determined not to give in gracefully. And even though my toes are twisted, my feet hurt ALL the time, my fingers don’t work properly and my wrists have huge bumps on them….I keep pushin’ I do feel like a shadow of the woman I used to be. Your story touched a cord. So well put. Thank you for sharing

  • Kathy Costelloe author
    8 months ago

    Dearest Keeppusin,
    Firstly, I love your user name..
    Thank you for your story.
    I am so sorry you are suffering.
    RA sucks Llama balls, really it does.
    I struggle, at times, with the positive posts.
    I am glad you were not offended by my ‘percieved negativity and my language….though I put **** to the language.

    I wish for you a moment, an hour, a day of painless fun. Or just fun.
    Consider yourself internet hugged.
    Stay safe.
    Stay real.
    Kathy X

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