Exhausted and done.

[TurtleWings]

It's bad enough I can no longer drive and have to find transportation. But now I'm expected to find and pay for transportation to a big hospital. I have trouble getting my family not to be aggravated by appointments etc... locally. I've been moved between three daughters back and forth. I can't even stay in one place long enough for doctors to work up diagnosis. Now I have potential for help dangling in front of me and no access. It might be easier at this point to give up. I've been doing this over a decade. I'm tired. There are no solutions I see.

[CJBmom]

Hi, I see you wrote your posting a few months ago. I don’t always check on this site, so I apologize for the lengthy time it took to reply. I think you have Behcets but you don’t mention it. So I’m assuming the answer is yes. Also, I’m not sure what symptoms you are experiencing and how you feel physically, other than tired of it all. Are you in pain? Do you have ulcers? Etc. I don’t know what potential help you might have, but maybe you have received it by now, I hope. 🙏I check this website occasionally because my adult son has suffered with Behcets for (too) many years now; he’s on palliative care and takes other meds to help him cope and manage the disease.

It seems that your family is trying to help, but you don’t have one specific place to live, it’s probably very unsettling for you.

Do you have funds available to call for a ride, like Uber or Lyft? Can you call the hospital to ask them about getting transportation for you?

Most family members do not have patience to indulge in another’s self-pity, it sounds like you have a tiny bit of that and rightfully so! Yet children (your daughters) probably get upset if you are in a “giving up” mood and not “trying” hard enough. How do you maintain a positive outlook in your condition? Think of those worse off? I don’t know but I’m trying to come up with any idea to help you.

The disease is wicked. Practically no one “gets it”, meaning no one understands the way it tortures a body and soul. So you are stuck with that. I think you live in the US. Unlike the health care in Britain (UK) where many of the posts I get are from, we struggle far more here in the US to get good health care, affordable and from decent docs who might even have heard of this condition. So all around it is very frustrating!!

I hope that by now you have some relief and treatment. If you suffer with chronic pain that will definitely contribute to feeling like you are at your end. I know that to be rather true and often the case. I hope you can find relief and I hope you managed to get some support from those around you.

The fact that Behcets is such an unknown disease here in the States makes it all the more difficult every time you visit a medical professional. They almost “pretend” to know about it (maybe they Google it before they talk with the patient) and because of their ignorance the patient suffers.

I know my son is often at the threshold of “giving up” and I’m always here to help him. For you it seems you don’t have another person at your side and you are isolated because of that. Try a more upbeat attitude, even if it’s fake, so others are more attracted to you to help and interact. It’s not easy advice to take and please excuse my crossing boundaries here, I wanted to try to connect a bit and tell you that you aren’t really as alone as you might feel. I send you good thoughts and sincerely hope life has become a little more tolerable for you. Good luck to you and stay as strong as you can.

🙏🌼🌸🌺