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Repost: what has surprised you about life with gastroparesis? Your responses may be used in a story on the Mighty!

What are some things you have experienced since being diagnosed with gastroparesis? What has been the biggest surprise that you wish you knew??? Let me know! For me it has been how each day is literally different and how I cant regulate my electrolytes and iron. That has affected me a lot. What about you???

#Gastroparesis #chronicallyillandstrong #chronicillnesswarrior #autoimmunelife #ChronicPain


It's a viscous cycle

So lately I haven't had many green to yellow days as I would say. The days where I feel like I'm on top of the world and can do a lot. I am super blessed, like Lord jesus I am so blessed and highly favored I have been able to work during COVID, but my job has actually gotten more difficult and demanding. Also by working from home I tend to work more than when I'm in my office. But I digress.

My body has taken a beaten and with the transition through everything, including seasons, I just feel awful these days. Big picture my meds and treatments are working but I also know I could be better if I actually rested more. But it's hard because I am my sole caretaker and have no help. But I feel guilty some days that I need pain meds to get up some mornings because I tossed and turned all night thus aggravating my arthritis and muscular pain or that I have days I just can't move because I feel awful. Or I feel so sick to my stomach I can't leave my bathroom. I also feel guilty that I still have to miss events sometimes because my body and the outdoors just don't mix.

I also have been pushing myself extra because my dad had major surgery and had complications and almost died and my mom needed help and my siblings weren't stepping up so I have been driving 2 hours to my hometown and 2 hours back several times a week and well I'm feeling it.

I guess I'm just not granting myself grace for feeling bad or needing some respite. I thought this long weekend would be enough but I was wrong. I see I needed more but i feel guilty for needing it. Do any of you ever feel that way? I normally am great at self care and taking respite but lately I just have been struggling and struggling with the fact that I've been feeling like trash. Summer doesn't always bring joy and better days. Like everytime I step out of my house the heat and sun just make me feel worse. I blow up like a balloon and my joints are on FIRE! So I've been avoiding the outside like the plague. Le sigh, just needed to vent. And do it to people who may understand.

#chronicallyillandstrong #endowarrior #autoimmunelife #ChronicPain #ChronicMigraines #Lupus #Gastroparesis #CKD #Asthma

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A Regular Spoonie Sunday #ChronicPain

I've been getting over #Bronchitis and a severe asthma this past week or so. I also have been in a bad lupus flare for a while because my body has been stressed, and this morning I feel worse. Ugh. Yesterday, I thought I was feeling better and did a bit too much, so now I'm feeling all sorts of pain and coughing up a storm and I'm super swollen. On top of that, my autoimmune urtecaria is on 100 as I've had to sleep with oven mitts on lol!!! So trying to do good and do my breathing treatments and Lymphapress treatments (they really do help with swelling and moving fluid!). You know, its it's just a regular Sunday morning as a chronic illness warrior!!

#chronicillnesswarrior #autoimmunelife #ChronicPain #AutoimmuneUrticaria #Lupus #Bronchitis #Asthma #HeartDisease #Lymphedema

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That's just my luck....

Today my godson turns 17. Yesterday I was supposed to go spend the day with him but I ended up at urgent care with chest pain, cough and a beyond painful lupus rash. Well, after being diagnosed with a little pleurisy and bronchitis and my rash is okay, no infection in that. I didn't make it. I was bummed that I wasn't there for my pud. But he totally understands. I'm thankful we have Cashapp these days,because that's all he wants lol, but I miss my kid. He's been mine since he was in his mammas womb! And he's like a whole young man now. He's so awesome and makes me proud daily. And even though he's a teenager, he still runs to give me hugs and tries to sit his tall butt in my lap! Soon enough I will take him to his fave place to eat and all will be okay. But, it still hurts that illness got in the way yet again. #chronicallyillandstrong #chronicillnesswarrior #Bronchitis #Asthma #autoimmunelife #Lupus


Chronic pain

I have been in some state of pain since March of 2014. It began as endometriosis and now I'm up to several chronic illnesses and autoimmune issues that cause pain. So today is a bad pain day and I sit here and try to weed through the 100+ emails in my inbox at work, my mind has ranked my pains in order from worse to manageable. So here we go:

1. CRPS from my fall down the stairs and I got 2 large hematomas in my thigh

1(a tie). Endometriosis pain

3. Kidney pain

4. Joint pain from lupus

5. Hemaplegic Migraines

6. Pluerisy

7. The pain in my leg with screws

Today, I'm easily suffering from several of these and legit wonder how I am still standing. Anyone who has chronic pain is a superhero....this is just FACTS!!

#Awareness #chronicallyillandstrong #endowarrior #autoimmunelife #ChronicPain #CRPS #Arthritis #chronicillnesswarrior #CKD #DDD


I am normally way better at coping #ChronicIllness

But my #Gastroparesis woke me up last night and it hurt so bad. And now that I'm up up,I feel like the tin man from my DDD and lupus. I need to go to work so I can save my paid days off but when I say I'm in excruciating pain, that doesnt even begin to describe how I feel. I had now ever loving clue that gastroparesis was this painful, maybe because I have an ulcer too. I went to wash my face and my rosacea and lupus rash were peeping through and all I could do was just stand and stare and fight tears. No one in my circle has as many complex conditions as I do, especially the endo or gastro issues so when I have days like this I feel super isolated. I have a sympathetic supervisor but I don't like to abuse my privileges or ADA accommodations. I know that's why they are there but I like my job and my team and since it's the last month of the year and quarter, I want to make sure we all finish strong ( can you tell I'm an empath?) Ugh, if just 2 things calm down I'll move a bit better. But seriously, why don't they say how painful gastroparesis is? I'm putting it on the same level as endometriosis... #chronicallyillandstrong #chronicillnesswarrior #autoimmunelife #endowarrior #heartpatient #Migraines #Gastroparesis

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To Reglan or not to Reglan....#Gastroparesis

So I had my gastric emptying test and failed it like a rockstar!!! I'm so proud of myself. I've honestly put off talking to my gastroenterologist about how miserable I've been, because in my world everything is either because of #Lupus or #Endometriosis or my ulcer and that's life(was shocked that this can happen A LOT in patients with Autoimmune diseases). But when I was having so much more trouble eating than normal I knew it was time to say something. So my doc got the results, emailed me and called in Reglan. I've had this before at the ER in a migraine cocktail via IV but never in pill form. The IV form makes me jittery for a bit then it wears off. So the pill form is a lower dose but 3 times a day. So how do y'all feel about it? I can't live on mashed sweet potatoes and applesauce and toast and crackers and things of the like forever ( well I can, HOWEVER, It's not the best diet). And the biggest question: has it helped your quality of life??? #chronicallyillandstrong #endowarrior #autoimmunelife #chronicillnesswarrior

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Sweet treats!

So I can't eat sugar or spices(cinnamon, nutmeg, allspice, cardamom or ground cloves), so basically most Thanksgiving desserts are out for me. While this crushes my whole spirit, this year I felt better because I was able to bake these pies for a friend and one of my volunteers at work. I may be beyond exhausted but something about making these treats for others made me forget how I can no longer have my fave holiday dessert: sweet potato pie. So while on the happy note, what is your favorite Thanksgiving dessert??? #chronicallyillandstrong #goodfoodgoodmood #FoodisMedicine #Rosacea #autoimmunelife #Inflammation #HolidayMeals


Don't mess with my sleep #ChronicPain

So my alarm went off this AM and I felt like what grows underneath crap. I got enough strength together to get a little food to take my meds. I set my alarm so I could wake up to log into work on time. Well, the universe had other plans because the trash man came earlier than usual, my neighbor kept going in and out her house slamming the door each time AND the precious little children decided not to stand at the corner where the bus stop is actually located, they wanted to play tag in front of my house. So while the Gru in me wanted to open the door and yell to the world SHUT UP! The former teacher and social worker in me said "Jae, they are kids, let them run and play. Your neighbor is half deaf and legit cannot hear when she slams the door." But the trash guy, well there is no excuse for him. HOWEVER, my sleep was messed up, I'm still in pain and can barely do my work. I hate when my sleep gets interrupted. Like me napping is highly essential to my daily functioning. Oh well....I guess not much will get done today.. #Arthritis #Asthma #heartpatient #endowarrior #autoimmunelife


Best heated blanket #ChronicPain

Alright Mighty Warriors, I need help!! Best heated blanket and go!! I loves my heating pad but it isn't big enough some days and frankly I'm too cheap to turn my heat up lol. Sooo we are investing in the heated blanket!! I need suggestions! #endowarrior #autoimmunelife