marciprester Hey guys! I recently went through a break up which prompted this topic. This is a pretty big deal for me. I'd love to hear your stories or feedback on how you've handled this before. Link in profile or YouTube MarciPrester -----------------------#Spoonie Romance: How to Tell Someone You Have Feelings For That you Have a #ChronicIllness #SpoonieProblems -------------- #spoonielife #spoonie #dating #chronicillness #chronicpain #rawarrior #rheum #rheumatoid #rheumatoidarthritis #fibro #fibromyalgia #lupus #lymedisease #invisibleillness #autoimmune #autoimmunedisease #love 16h
  •   marciprester @marisafit5678 thank you. I try! But we all have those times where even though for the most part you feel like a rock star, there are moments of insecurity. This is definitely one of those moments 16h
  •   _dandy_lion_ My lupus diagnosis prompted my divorce. Some people just don't understand sick if you don't look sick 16h
  •   verylysy @marciprester I helped my ex to diag her with thyroid issue. Having my RA baggage i did not mind to go to library to do research for her. I don't know how it would have been the other way, had she been healthy. I can only assure you there would not be fights over it. One time chance, explanation whats going on, you get it and are willing to go along or byfelicia. We only have so little energy, we have to use it scarcely and wise 16h
  •   lilyhasaunicorn I have HAE, and sometimes he will get mad and not be the nicest because he thinks I work myself into attacks and I overreact when a prodrome pops up. Its hard for him to understand as I've gone through it my whole life and know how bad it can be, and there's no way to explain the pain. Both his daughters were recently diagnosed with type 1 diabetes, so when he does try to tell me its in my head I maybe not so nicely remind him that he would never dream of telling a diabetic it's in their head. Its definitely a hard part of a relationship, and I know it would be so much harder if I hadn't been diagnosed and my medicines weren't controlling my disease so well. 16h
  •   marisafit5678 For sure! Hang in there. Before I dated my husband I dated a guy for two years who ended up telling me he resented me for my health problems and another for almost as long who told me he wasn't attracted to me me when I was in pain. I was totally devastated both times. But now my husband thinks it's cute when I'm curled up in a onesie, he hates to see me in pain but embraces who I am just the same. 16h
  •   marisafit5678 Keep the faith! Your illness doesn't define you. 16h
  •   spoonie_beachdude I'm now dating again! Tough but the right person won't see your illness, just you! 14h
  •   3xdane My illness was the cause of my divorce.........I prefer to be on my own so I can take care of me. 13h

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marciprester Hey ya'll! I want to start being more active on Twitter. Send me your Twitter username so I can follow you! Mine is @marciprester ------------------- #spoonie #spoonies #rheumatoidarthritis #rheum #fibro #chronicillness #spoonielife 2d

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marciprester Go #Flyers! Best surprise ever @lemonboard ---------------------- #philly #igers_philly #hockey #fun 4d

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  •   cmeandance This is so mu hubby. But, I feel the same way about him. 5d
  •   lovechild49 Yess now that's true love🏾 5d

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marciprester #latergram of last night's amazing sunset! @lemonboard #nofilterneeded 5d

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marciprester It's important to allow yourself that down time. The time where your body can do what it's supposed to do, which is heal. You shouldn't feel guilty giving yourself that-------------------------- #loveyourself #truth #Spoonie #spoonielife #spoonieproblems #rheum #fibro #fibromyalgia #lupus #lymedisease #ChronicIllness #methotrexate #chronicillness #chronicpain #love #rawarrior #rheumatoidarthritis 1w
  •   angesoasis 6d
  •   alleigh.molchan Love this!! 6d
  •   lvgirlz @marciprester @fibro_gal truth be told say it girl 5d
  •   loftandlearn So true 2d
  •   lifeizart 🏼🏼 2d
  •   ivylaartista Indeed! 1d
  •   colinbeavan The problem with this is that it is utterly not true and provides an excuse for people not to help the world in these times of crisis. It would be better to say "you will be better at healing the world if you are also working on healing yourself." Meanwhile, there are many, many "unhealed" people who make themselves angels to the rest of us by worrying more about healing the world than themselves. 23h
  •   colinbeavan I dont mean to say that my words apply to those with chronic illness of course. 22h

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marciprester New client feature! Can't wait to start working with @thejuicemerchant. Loved our meeting of the minds @chef_m_ez #greenjuice #manayunk #philly #philadelphia #healthy #wellness #cleanse #detox #juice #manayunkphilly 1w

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marciprester New #YouTube Video up! Feeling Invalidated: The Tribulations of having a #ChronicIllness and #rheumatoidarthritis. Let me know if you can relate! Love and hugs️ (link in profile) or www.YouTube.com/Marciprester #Spoonie #spoonielife #spoonieproblems 2w
  •   dbduca Blessings, sweetie! 2w
  •   titi42071 Hello @marciprester , my name Tina and I have RA also. It has been a very frustrating journey so far. I used to do anything and everything I wanted whenever I wanted and used to only take vitamins and a couple of natural supplements. Now I have a lot of limits and a lot more meds. It's hard to make plans sometimes cause of the RA and or the side effects of the meds. And it's adds to the frustration when well-meaning loved ones "give their suggestions" or "advice". (I have several friends and family members that love me but really only one who really understands because her mother has RA.) I don't mean to sound like Downer Debbie. I completely relate to your story though, as I am sure many others will also. Thank you for making the videos. It's sad that so many of us have to experience the same difficulties, though. Maybe though we as a community can increase awareness and education on RA (and other chronic/ invisible illnesses). I can't tell you how many times people have asked/ told me "if I ate better food" or "moved around more" or "got out and did more" or "took something for it [RA]" "things would be better." Well, just before my RA I worked 40+ hrs a week, exercised regularly, and was active with friends and family. I am currently on 3 prescriptions for my RA, (in addition to multiple natural supplements) and yet I still have many flares with all the limitations the flares entail. I am hoping I find the right combination of everything to return to feeling like I'm in control of my life instead of my RA being in control. Sorry to be so long winded. Thank you again and I hope this finds you having a fun, happy, and flare-free day! 2w
  •   dascorpita Definitely not alone girly! I can't get a diagnosis beyond fibro to save my life (ack that might be a literal statement) even though I absolutely know in my gut something else is wrong. It starts to feel impossible. My latest rheumatologist that I had high hopes for told me my blood work was fine so therefore I must just have fibro - even though the diagnosis I'm looking after doesn't currently have a blood test. She then proceeded to try to prescribe me prozac. It's not even one of the antidepressants that are treatments for fibro pain! She just thought I was being whiny and that whiny actually corresponds with the serious mental illness of depression. So. Yeah. Invalidation. Again. And. Again. She also thought I wasn't "that bad off" even though I'm 27 and looking at canes to help me get around the house. I guess that's perfectly normal, hey? Anyway. Cheers, girl! It's through community that we learn and strengthen ourselves 2w
  •   nicolemarielara @dascorpita it sounds like you need a new medical provider. Fibro is a relatively new diagnosis and a lot of Docs don't even think it exists. I had the same issue when I saw rheumatology. There are definitely providers out that (like myself, I'm a nurse practitioner) who believe that fibro is real and will treat it as such. I have fibro too and I know what it's like being brushed off. Totally not normal to need a cane at age 27. Best fibro treatments are cymbalta, lyrica, a muscle relaxer, and an NSAID (like ibuprofen or naproxen). They should also make sure your vitamin D, b12, folate, and iron are normal bc that can make the pain worse. Exercise is important too, have you thought about swimming or water aerobics? Yoga is amazing for it too. I know it hurts, but not being active will only make the pain worse in the end. I'd be happy to chat with you more if you have any questions. ️ Also- turmeric with curcumin is super helpful. And Epsom salt baths with a muscle relief essential oil added in. 2w
  •   swinka.pawpaw Will watch your video while having breakfast! 1w
  •   jojocromwell27 @marciprester hi , I am still under investigation myself !!!! After numerous visits to A&e , antibiotics given , fainting , vomitting sweats , I thought I was going mad, then took pneumonia admitted in, bloods through the roof , tried to explain precious illnesses, no one would listen, home and back in hosp after 2 weeks with pneumonia again , 5 weeks, extreme joint pains , that consultant said something's not right. 320+ blood tests, ct's, pet scan . Told me I was a medical mystery. Blood works crazy, started saying lupus . Diagnoised in April 14, with autoimmune disease, then fibro, still testing though. Those days before diagnosis , there where times I felt so alone and disponsant. Thought I was going to die sometimes , felt so ill. Good luck with you're journey . I'm pretty new on ig, but it's been amazing meeting people like myself. 1w
  •   streetwearde 1w
  •   layniefingers @jojocromwell27 Man, it's the worst when a doctor tilts his head and says, "Wow, I've never seen anything like THIS before..." 3d

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marciprester #Spoonie Rant: Listening to others "Heal" your #chronicillness and how I respond." (Link in profile) at the bottom of the playlist. Can you relate? Let me know what you think! #spoonielife #spoonieproblems #rheumatoidarthritis #autoimmunedisease #fibromyalgia #fibro #invisibleillness #rawarrior #chronicpain 2w
  •   marciprester @momalyna99 no I totally get it. I was referring to people who have never really had ANY experience with chronic illness. they are suggesting things without knowing the back story or the illness itself. 2w
  •   andreakellydesigns I'm so grateful you are sharing your journey 1w
  •   crystal_angelique @marciprester I've been dealing with these types of "helpful suggestions" since I was 12 (34 now). I used to hear people out and then go into a long winded explanation on what JRA/Fibro does ... Now I politely cut the person off and tell them unless they have an honest to god magic pill that will regrow my hips, give me back my mobility, and enable me to NOT go into the hospital multiple time a year to get infusion therapies, thanks but no thanks. That, or I bust out with telling them medicinal marijuana has been my saving grace. Having Resting Bitch Face also goes a long way 🤘🏼🤘🏼 6d
  •   marciprester @crystal_angelique that's how I've been responding lately two. Trying not to be rude when I cut them off but definitely letting them know I've done my research 5d
  •   poetickai Ooh I gotta go watch this 4d
  •   poetickai Great video! I've subscribed and commented. 4d
  •   crookedfingersgirl Omg i freaking Hate this: I know that's a strong word but that's how strong I feel about it!!! 4d
  •   crookedfingersgirl I've had this recently....A TON since moving back from LA.... I hardly say my thing but thank god for social media!!! My social media friends!!!! 4d

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  •   grownnutkid I feel for you. I'm only in south Texas, but winter is still hurting like hell. Can't wait for spring 2w
  •   danhamos @marciprester thanks for the love on my page! Yours is awesome! 6d

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Normal marciprester
marciprester New video finally up on my #YouTube channel! My #rheumatoidarthritis backstory part 2, methotrexate and #spoonieproblems. Since I just started these I would really love some constructive feedback from you all. Let me know if you can relate! (link in profile) #chronicillness #autoimmune #arthritis #truth 3w
  •   mklaassenpepler Will check it out! 🙂 3w
  •   mklaassenpepler My RA started not at a young age like you. Methotrexate is what I take now after trying lots of different drugs. One Doctor told me at the first meeting to go gluten free. That was a WOW experience as far as the pain diminished in 6/7 days. 3w
  •   mklaassenpepler Take the days as they come, pick the good ones and enjoy. There are a lot of things I no longer can do but the ones I can are grabbed by both hands and I tend to fully enjoy it! 3w
  •   ollyyear Ayeee follow me back? 3w
  •   jenniperberry RA sucks. 3w
  •   daisybaby38 What all do you have, or is RA your diagnosis? 3w
  •   daisybaby38 And, thank you for coming on my page so I could "meet" you. #fellowspooniewarrior #ra #spoonie #fibrofighters #fibrocolorsonfcbk #oa #fibrofighter #rheumatoidarthritis #SOS_SupportOurSpoonies #SASS_SupportAllSpoonieSisters #sos #sass #SupportOurSpoonies #SupportAllSpoonieSisters I've been trying to start those Hashtags for awhile, now but ONLY did today, here, b'cuz it was time. I have more but they're for others 3w
  •   tennessee_bleu I'm so sorry you have to deal with RA daily! I've have various autoimmune/endocrine issues for the past 11 years. I was just diagnosed with seronegative polyarthritis and synovitis; I start Plaquenil tomorrow. Being a young adult with chronic health problems is definitely not for the faint of heart. I went from being a straight A student, collegiate soccer player, and wife to being a divorced adult living with my parents who has been unable to finish my degree and receives food stamps. Good luck with your journey, I look forward to hearing more from you! P.S. Turning off background noise, like the tv or radio would really make your videos easier to follow...God bless! 3w

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  •   msluanne I have so many of these socks yellow blue and a grey pair. The grey are my favorite lol 3w
  •   yariiphoenix I'm wearing red hospital socks right now 2w
  •   coveredndiamonds Feel better 2w
  •   hippierrriot I have so many but never yellow lol @marciprester 2w
  •   littlelimeblossom Hugs I'm a pajama horder!!! When I'm in hosp I have like 5 different pj outfits. At least!!! Spoonie life in action lol 1w
  •   crippledbeauty I've had RA, Lupus, and Sjogrens since 4. I'm almost 37. I've had 18 surgeries and counting and literally grew up at the Mayo Clinic. I lived in it for 3 solid years. I had an ischemic stroke last year brought on by inflammation of spinal fluid. It happens in autoimmuners. It will only take place on one side of your body and you will know if you're having a stroke. You're in your body but you can't communicate to others, you can't see out of your, speak, or raise your arm. To regain the nerves that were lost feels like fire even a year or so after the fact. I lost some cognition and those spinal taps hurt to determine the level of inflammation. A stroke is no joke. 4d
  •   crippledbeauty I'm totally glad you didn't have one! 4d
  •   crippledbeauty I wouldn't wish that on my worst enemy. 4d

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marciprester New video up on #YouTube: #Spoonie Guilt: Dealing with #chronicillness guilt, shame and #rheumatoidarthritis (link in profile) Be sure to subscribe and let me know your thoughts on the topic. Can you relate? #spoonielife #spoonieproblems #rawarrior #autoimmunedisease #chronicillness #lupus #like4like 4w
  •   recaptureyourzealforlife Thank you for your videos & sharing your story! I found out had RA almost 3yrs ago changed diet & was able to control w diet nutrition & exercise. Then had baby & it's full blown, still managing med free so far & hope to continue to do so, but some days are harder than others being breastfeeding mom w tiny one to keep up w. Oh I honestly had no idea what a #spoonie was, until I googled it & found the story of where the 'term' came from. Needless to say it made me cry bc it hit SO close to home..... Again thank you for sharing & reaching out to all us #spoonies 4w
  •   ramadanibunga Hi @marciprester. Nice to connect with you my spoonie friend. Stay awesome 4w
  •   angelelisa4 Good to connect with you. I can totally relate. 4w
  •   rheathevword I'm a spoonie too though not with RA. I can relate to the guilt too. 4w
  •   marciprester @dbduca @bunga.pitatosca @bumblebeecats @recaptureyourzealforlife @angelelisa4 @rheathevword hey guys! Thanks for relating! I've only been making the videos for about a week now and connecting with Everyone who actually gets it has been amazing. More to come tomorrow. 3w
  •   crookedfingersgirl You go girl!!! 3w
  •   marciprester @crookedfingersgirl thanks lady. I just started making them so any feedback you can give I'm totally open to 3w
  •   oduchess I can certainly relate to the guilt. When I was diagnosed w/Sleroderma--after a heart attack & triple bypass, a stroke, and necrosis in 8 fingers-- my wasband (note WAS) decided I was just being a lazy hypochondriac. He sent me out to get a new job so we would be insured b/c his self- employment was too important. When I was missing work due to pain & exhaustion, he literally threw me out. Now I'm on my own, on disability and NO MORE GUILT! I'm still sick but now my life is one of peace. 1w

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marciprester I try to always wake up feeling #thankful for my blessings, but today especially, I felt my heart fill with an overwhelming amount of gratitude while #meditating. So incredibly thankful for all I have in my life. -#graditude #yoga #healthy #wellness #balance #spoonie #rheumatoidarthritis #rheum #fibromyalgia #rawarrior #autoimmune #chronicillness - 1mon

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