Trying to explain an Autoimmune disease to someone

[Sophiebun11]

A constant battle, day after day against our own bodies and vice versa.

[Chimama]

So true... When you have autoimmune disease it really sucks.. excuse me.. but unless someone else has gone through it they don’t know they don’t, can’t or won’t understand why you can’t have a set schedule, plan on something ahead of time because you don’t know if you will be able to attend. It’s hard to explain to someone if they barely bump you or hug you or even move a hair on your head that it hurts ... oh yea they think your either faking or crazy or hypochondriac or something.. I don’t ever wish illnesses of any kind on anybody but just once maybe I could get my Dr to listen when I say I hurt so bad feel so weak and tired it’s hard to even get out of bed let alone function.. it’s really sad when your Drs and nurses can’t spell your illness or you spend 40 min trying to describe Sjogrens Syndrome, Fibromyalgia, lupus , Mixed Connective tissue disease .. what it is and how destructive it is ..oh they might believe you or more than likely not . So hard to try to tell a 6 year old you will ‘ try’ to be at his football, t- ball or schedule a date in the park and on that day maybe just maybe you can but then can’t do anything else for days.. sorry 😞 it just sucks to be me / us most days..but I’m grateful to be alive and sad to know there are so many others with worse things happening in their lives . Like my baby girl who has unfortunately inherited my genetics! When her Dr says what’s the top of your list I have 10 minutes tops because that’s all the insurance company will pay her for your visit!!! Grrrr the mama bear in me wants to rip somebody a new one. minOopsies I wrote a book 📚

[Sophiebun11 in reply to Chimama]

I'm lucky I basically only answer to my kitty, Henry. He is very understanding and forgiving. If I don't feel like playing he is happy to just snuggle and do nothing with me. He reminds me when I forget his food or to fill the water bowl after washing it.

I can't imagine having to feel like I was disappointing humans/children who depended on me. We can only do what we can do and learn to forgive our limitations and hope others will too.

The week before my Dr. appt. I try to pick one thing to focus on in the limited time. At least my PCP is good with treating symptoms and I see him monthly.

My mother and grandma both had RA so it figured I'd inherit an AI. I got my lovely migraines from my dad. I hit the genetic jackpot!!!!!

Hug your fur baby when it's a bad day, they don't mind our condition no matter what condition our condition is in that day.

🐇

[Sanmateogirl107 in reply to Chimama]

ok if your doctor does not listen call your insurance and say i want a doctor who listens to me. stanford basically told me there is nothing wrong so i left. i made noise and now have a great team san mateo medical center. call the administrator also and complain to him they do not understand what we go through it sucks your right. pace your self every one thinks we can it all in one day tell them do you walk in my shoes do you want me to point them out to you. love your self first. self care is everything. talk to a counselor can help too tell your family can we schedule for another day you do not have to explain your self if they can not understand walk away, find a support team on line, remember you are not alone i am here i love you and will support you. you will never ever walk alone. i am proud of you warrior. love julie

[Sophiebun11 in reply to Sanmateogirl107]

Just today I got an appt with a new Rheumy. She's an hour away but I can manage that I hope.

I can't complain to ins. as I have Medi-Cal. I'm lucky to even get a Dr. who will see me at all.

I'd like to go to Stanford but I'm way out in the Central Valley area of CA so it's about a 4 hour drive one way to get there. I used to live in Alameda but was priced out of there.

Thank you so much for your kind words of support. I did start seeing a therapist when I got my cancer diagnosis 7 or 8 years ago. He is a great support system for me. I talk on the phone since I started with him when I was in the Bay Area but he still "sees" me. And my kitty, Henry, is my best support system of all. I am so blessed to have him and friends here on the forum.

Thank you and best wishes. Take the best care of yourself that you can!!!!

[Sanmateogirl107 in reply to Sanmateogirl107]

i have medi-cal too call them and talk to them and ask them to help you find a new doctor you like and be firm and make noise. peninsula is great also and takes medi-cal and seton in daily city. you have to advocate for your self. dr dr jescuk at san mateo he is very good and get into the pain group love julie

[Sophiebun11]

I just got an appt. today in an email. It's for Feb. 23 in Modesto at Sutter Health. I see Sutter for everything, kidneys, cancer, asthma, migraines. There are only two Rheumys in my city, one doesn't take Medi-Cal the other was an idiot and yelled at me. I had no options. Living in a small rural town is different that the Bay Area. It's hard to understand if you aren't here. I didn't get it myself at first.

I'm all set now. I only complain when there is a reason or something that can't be done. Medi-cal can't force a Dr. to take their ins. Many accept it in long term pts. but not new pts., that's what happened with my Pulmonary Dr. in Alameda.

I'm sure the appt. on Feb. 23 will be great. I could have gotten in next week if I wanted to fight rush hour traffic for 3 hrs one way for an 8:00am appt. and leave at 5:00am I can't do that, it's too much. I have a 12:30 appt. on 2/23. Much more civilized hour. Others wait a year in the UK so I am VERY lucky to get in within a month. No complaints from me. That other stuff happened years ago. I'm totally over it.

I fought for this referral for a year, and it came through today. No ins. calls. My Drs. were faxing referrals to every Rheumy within 100 miles and none would take new pts. or Medi-cal pts. My Neph placed a call and my PCP faxed and the office recpt sent me a choice of appt. dates and times to pick from finally this morning. It was easy peasy when they finally found the right office. I just wish it were closer as my car is a 1987 Volvo and I worry about driving over an hour each way to a city I've never been too when I get lost easily as my car has no GPS and I don't have a smart phone. I may take the bus, I don't know anyone here to take me.

Thanks again.