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My 1 Year RA-nniversary!

I’m 33 y.o. Female and my first year with RA is now “out of the way” The year flew by due to ongoing RA challenges, doctor’s appointments, life… and more doctor’s appointments. If only I could see a proctologist, podiatrist, a neurologist; my dance card could be complete! But there’s still time, of course.

Onset:
Fall of 2015, my ongoing mysterious foot pain (both feet) was getting worse and I couldn’t hide/avoid it much longer. I had a hard limp and strangers asking me if I was “ok”. While at my new (and first) desk job, I was developing what I thought was carpal tunnel; having wrist and finger pain. Fast Forward to Thanksgiving, I had random hoarseness and I lost my voice until Christmas; in addition to the increasing amount of overall bodily pain. As a side note, I did enjoy utilizing my “old lady”voice for saying funny phrases in conversation. By New Years, I could not avoid the inevitable. I made an initial PCP appointment because I could barely walk, get out of bed, squeeze the toothpaste, hold a teacup, open doors, put on pants, go up and down stairs, and well…wipe my ass; without having intense pain.

The Workup:
Referred to a rheumatologist in January 201 and was diagnosed with “seropositive rheumatoid arthritis with rheumatoid factor of multiple sites” and was sent on my way with a battery of meds and steroids. I am now worked up to 25mg Methotrexate injections 1x/week (self inject- intramuscular) and just recently added Plaquenil 400mg/day. This is accompanied by all of the fun supplements like Vitamin D3 and folic acid. Voluntarily, I also included vitamin chewables (because I’m still 5 years old) that include a Multi-vit, B-12, Omega 3, and Vitamin C. With allergy medication and birth control as well, I’ve caved and purchased a hilariously large AM/PM pill box to accommodate this mess. I also have an eye test (vision fields) pasted on my wall to do weekly to make sure the Plaquenil isn’t making me go blind.

Current Status:
From feeling like I was 95 years old and heading to a wheelchair to now feeling like I’m approaching 55 years old with future cane use; there has been improvement! I’m grateful to be able to open the door, walk a little bit, and hold a mug again. I don’t think I’ve reached the magical remission state, but I’d like to get there. Having had RA now for a year has put many things in perspective; how much we take for granted, how sympathy is not the same as empathy, how ability can impact identity, and how insight will hopefully lead to inspiration.

Tips/Tricks Along the Way:
(general tips, I’m not a doctor… and everyone is unique in what works for them)

Electric Blanket– covers the whole body, has adjustable heat, you can take it anywhere!
Heated, Bubbly Foot Bath- provides some relief for painful,tired heat. Add herbal epsom salts for more benefits!
(You’ll notice a “heat” pattern. I have Urticaria skin condition-allergy to cold-so no ice for me!!!)
Comfy shoes– it is a must! I’ve ordered and returned countless pairs of shoes in the search for the Holy Grail of comfy shoes. I’ve even submitted and wear Crocs around the house. The brands that fit my weird feet (size 35w/4.5 c/d) are crocs and Wide-style Naots, & Nike.
“Easy Access” clothing– that sounds inappropriate! I mean clothing that doesn’t require tons of effort or ironing.
Modified Diet– my willpower is forever wavering, so cheat days happen to keep me on track overall. I eat mostly a plant-based, dairy free, gluten free diet. Which sounds food free, but really is pretty full of variety. I will also have the occasional fish dish! I need to cook more rather than buying processed/pre-packaged. There is a lot of junk food that is vegan. Pinterest can be your friend, folks!
Adaptive Fitness- my personal “fitness” is low, sporadic, and sometimes nonexistent. Feeling pain doesn’t lead to fitness motivation. I am trying to change this!!! But I’ve found certain types of exercise easier than others. Aqua Zumba (actually awesome), Pilates, Stretching, and light walks are the things that I try to incorporate.
Pacing/Rest- being self-aware is huge! I try to remember to take breaks in between difficult/busy tasks during the day. I have Chronic fatigue as well (from the RA and drugs I think) so sometimes finding a balance with pacing is difficult.
No Alcohol- due to the meds, I was advised to minimal/occasional drinking due to the methotrexate causing possible liver damage. I just decided to embrace the occasional non-alcoholic beer (that has gluten..lol) or drink mocktails instead. I haven’t searched for a non-alcoholic/gluten free beer because I think that is asking for too much and would taste disgusting!
Adaptive devices- JarPop Jar Seal Openers, adaptive Jar Opener, wide grip can opener, rice cooker, etc. I use or perform regular stuff “in an adapted way” like using pots with 2 handles more often, pushing opening doors with my arms instead of my fingers, supportive wrist cuffs, etc.
Accepting help- sometimes trying until I fail is not an option anymore, I just need to ask for help. Try/fail/suffer is not good. Try/Accept/Help is how I’m trying to do things so I don’t end up stressed, frustrated, and in more pain. My husband is amazing. He is always there to help me when I need it and encourage me when I need to help myself. I’m so grateful and I thank him for every little thing he does. (pre-opening bottes, pre-squeezing toothpaste, opening car doors… I’m pretty damn lucky)

~Writing this was actually pretty therapeutic, so thank you to anyone who took the time to read/scan this post. Take care of yourself!

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

  • nrodriguez214
    2 years ago

    Hi Malmooge
    FIrst off thank you for sharing your story. I myself am 32 and was recently diagnosed with RA about a month ago. A lot of what you said in your story I can relate to. I have made some small progress as well. Definitely not feeling like a 95 year old lady anymore. It has amazed me how many small things I have taken for granted as well. Simple things such as clothing or trying to open jars or even brush my teeth. I also had to give in and get one of those ridiculous pill organizers, but it really helps. I am on a crap of meds hoping they work. It was nice to see a story of someone who is close to my age. I wish you the best of luck on your journey!!

  • malmooge author
    2 years ago

    Hey @nrodiguez214! Thanks for your comment! The RA game puts things in perspective, but has also helped me to be more “creative” on how I do everyday things. Planning and “self care” should not seem daunting, but sometimes it just is. You settle into your own “pace” as things go along. I hope your crapload of meds start to work for you! take care 🙂

  • SharonsDaughter
    2 years ago

    Hi Malmooge:
    Thank you for sharing your story. I can’t imagine what you and everyone else on this site has gone through with RA, meds,coupled with the many other health issues you all have to deal with. Your story stuck out to me because we’re close in age, I’m 32. I’m aware RA affects people of many ages, I haven’t come across many stories from people in our age group often. I’m curious to know (if you don’t mind sharing) if you’re a mother, how do you manage? Having RA, being a wife, employee, good friend and family member? My positive RF blood test came back in late 2016 but I was told I’m not officially diagnosed until I see the Rheumatologist. I will be seeing the specialist soon but in the meantime, I’m very anxious about my future. Before my positive test came back, I was already feeling the symptoms worsening, which prompted the test. Any feedback would be great. Thanks!

  • malmooge author
    2 years ago

    Hi @SharonsDaughter! Thank you for commenting on my little post. I am not a mother. I do currently work 35 hours a week, but I am fortunate that it is a desk job where I can put my feet up. I try to keep the household chores 50/50 with my husband, but there are days or weeks that its harder for me and/or it takes longer. Naps, humor, and a hot pack go a long way! You will find your own “pace” and it will vary. Hang in there! 🙂

  • SusanHU
    3 years ago

    Hi malmooge,

    Thank you for posting and sharing your RAnniversary with us!

    We’ve had a number of our contributors share tips and tricks that make life better and it is always helpful to other members so we appreciate it!

    Here are some tips you might find interesting:
    https://rheumatoidarthritis.net/living/community-tips-chores-errands/
    https://rheumatoidarthritis.net/living/community-tips-for-friendly-clothing/
    https://rheumatoidarthritis.net/infographic/tips-for-traveling-with-ra/

    Be sure to keep us posted on your second year!

    Happy weekend!
    Susan
    (RheumatoidArthritis.net Team Member)

  • TracyE
    3 years ago

    I really enjoyed reading this. I have not hit my RAnniversary yet but I can relate to many of the things you wrote and at that moment I felt “not so alone”. So Thank you for that since it is a first for me.

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