heartpatient

Hey all. I have been diagnosed with cardiomyopathy and heart failure. I already had SVT and afib. We have been trying to get meds right, of course in addition to lifestyle. Has anyone taken Entresto? Thanks in advance for the help!
#heart failure #Cardiomyopathy #chronicallyillandstrong #chronicillnesswarrior #patientpatient #heartpatient

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

So my mom doesn't get the world of chronic illness. Which is so odd because my dad is chronically ill and has been for sometime, and her sister's have some pretty tough health issues as well and have also suffered for a while. I thought she'd get it as I've gotten worse but she is not as supportive as I thought, nor does she get it or even try to sometimes. Today is a red day for me, and she calls for our daily chat. I'm not saying much and finally she says "well what is wrong with you???" I try to explain I'm in excruciating pain and exhausted and that will take the life out of you. I also told her that my vocal cord issues were acting up as well. She says well okay. We hang up and I text her that I won't apologize for how I feel butbut if Iwas short you know why. This is my reality. You can't pray it away or any of that. Just pray my strength for this journey. She says okay. I get so frustrated with her because it has been 5 years now. I try to educate her and she is so resistant but wonders why I'm tired and cranky all the time. Well ma'am if you took time to really listen learn, maybe I'd be less frustrated and you could be more sympathetic. I will say, she is better than she was this time last year. But as for full on understanding, she has a long way to go. Maybe we will get there. I can dream right??? #chronicallyillandstrong #endowarrior #heartpatient #Migraines #patientpatient

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

I have been divorced for a while, and dated before falling ill. My last real boyfriend left when I was having emergency surgery for #Endometriosis. I survived and eventually moved past him. I attempted to date someone else a good while later and thought it was the perfect set up because he too had a chronic illness. I found this is not a good set up when you have A LOT of illnesses and your body is all messed up and that person has like one illness that is legit controlled by avoiding an allergen. Anywho, he eventually left to "sort his life out". Well since then, dating has been really hard and nothing has matriculated and I have found that men are REALLY REALLY MEAN!! I have been ghosted, yelled at and even told that I don't deserve love because I'm I'll. Dating was hard for me without being ill, but having multiple chronic illnesses and autoimmune diseases makes it even harder. I have tried to hide it but it eventually comes out and then I never hear from them or it turns into an argument. Or if I'm outright honest, I get treated like a puppy( the awww you poor baby or I'm totally helpless when I'm not) or ghosted a lot earlier. I want companionship and to have a partner, but starting to feel how is that possible when all I do is work, go to treatments, pick up meds, grocery shop and doc's appts? So I guess my question is, how do you date ? Or do you even bother dating? #chronicillnesswarrior #autoimmunelife #endowarrior #heartpatient

So I received a response today in discussing #ChronicIllness and it went to the effect of you will never have good days. And that kind of offput me. When I was diagnosed with #Endometriosis 5 years ago and realized my new normal, I adjusted what was a good day, a fair day, and rest day and just a really bad day. I came to terms with redefining what my life looked like. which I knew was important if I was going to ever function. As years have gone by, I have had to adjust more because of more diagnoses and restrictions. However, I always knew deep down inside that I still had purpose and a great life to lead, it just looks different than what may be considered good or normal to others. I have been in support groups where the tone is negative, and because of many experiences, I learned that that doesn't help me thrive. And I think that is what we sometimes forget as warriors, we are still human and we can still thrive. Yes, life is different but you can adapt as much as you can. I am not sunshine and rose petals every day, but I realize one thing: I am a thriver and my experiences have led my walk and that we are responsible for how we adapt and how we react to our new lives. As I say all the time, I am chronically ill, not dead. #chronicallyillandstrong #chronicillnesswarrior #patientpatient #heartpatient #endowarrior #autoimmunelife

12 hour day done. Day 2 of driving for work. Swollen legs, tired feet, hands swollen and tired too. Migraine coming in. Thank God I can move slow tomorrow #chronicillnesswarrior #autoimmunelife #endowarrior #heartpatient