ChronicSarcoidosis

I am tired of dealing with doctors that just don't get me. My Cardiologist and Rheumatologist did not refill my meds. The want me to come into the office and not via TeleMed. I truly love my doctors, but not having meds to keep me alive and not in excruciating nerve pain is sad. After experiencing stabbing pains in my head everyday that lasts 35-40 minutes straight, and itching like I have chicken pox or something. All this kept me awake and also with the excruciating bones and joint pain; I cried all the time and felt alone. Finally, my PCP and my Neurologist had enough and wrote the prescription's that I needed. On top of having #ChronicSarcoidosis #Fibromyalgia and #RheumatoidArthritis and relying on 5 liters of oxygen 24/7; I can't afford to not have people in my corner that really understand my fight. I know we all have experienced something like this at one time or another right? #sarcoidosisawareness #LivingWithAChronicDiseases #MarilynsFight4Life #fighting4acure #Fibromyalgia #RheumatoidArthritis #LivingWithChronicPain

Having been told by my doctors that they just want to keep me comfortable and with little to no stress, you would think that my son and my daughter-in-law would be a little more comforting. The problem is that I don't know what the problem is. My daughter-in-law just stopped speaking to my family over a year ago and we don't know why. We love her dearly and she just cut us off. Our son is stressed and in the middle of it. I recently had a visit from my son after a year of not seeing or talking to him and at first it was a great visit, but after a couple of hours it got really heated. Our youngest daughter asked him to come visit more and to bring his wife and then, BOOM! Temperatures escalated and he stormed off. My heart is breaking. Our family was a very tight knit family. We miss that closeness and our daughter's miss their relationship with their big brother. My blood pressure is elevated and we are all suffering. My cardiologist is fearful of me having another stroke. Sorry for dredging this on, but I am at a lost as to how to reach out to my daughter-in-law. #Proudmomma #ChronicSarcoidosis #RheumatoidArthritis #Fibromyalgia #sjogrens #AutoimmuneDiseases

Dealing with #chronicpain #MarilynsFight4Life #fighting4acure #sarcoidosisawareness

I miss my children ☹😪

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