Hi everyone, I'm wondering about certain aspects of these diseases and would appreciate advice, feedback, information, if you can. Does anyone have a CNA, certified nurse's assistant or aid, come in to help with some daily tasks?
I am dealing with the fatigue and it is better, now, dealing with it, than originally (originally it was unexpected, at first , unexplained and as overwhelming as the disease itself). I still have it, but I think it is less.
If I have to deal with it for the rest of my life, there are coping mechanisms (some discovered here, on this good post), I am alive and I have my vision. I believe I will make it past the four years, it was my understanding, was the 'morbidity' on this disease.
I believe an aid would help. Does anyone work with one ? especially on those days -- headache, body ache, fatigue. Problems with limbs moving. And no one to shop for me or go to the pharmacy. I have found a pharmacy that delivers, which is really good.
I will be changing to a long term care health policy -- because of healthcare changes in our country, in a month or two. Through that plan, I believe I can have an aid come to my apartment. I think I can now, also, due to the potential severity of GCA, my thigh and some of the blood markers. We have an association, VNA, Visiting Nurse Association and I think I may be able to arrange one. I have had one come to my apartment previously, but it was too many hours, the shopping was done, dinner was cooked and I wanted to work on my non-profit work. One aid was very nice and that was fine, we spoke a lot about the African country she came from (I have previously worked at the United Nations and had some familiarity with her country, so that was good). The other was a teenager and she used the extra time to text her friends, talk to her boyfriend and -- -- come on, I'm easy to get along with -- but -- come on. I also work on nursing abuse -- so -- - -- That wasn't abusive and I am too young and strong for that -- but -- -- wasn't too happy about that.
I think I will try again with an aid.
I am having hip replacement surgery in about two months and will be eligible for an aid, then. Possibly if the GCA is still an issue, will continue with one, for awhile at least.
Is anyone else involved with a nurse's aid in the home ?
Also, has anyone returned to work, either full time or part time? With this fatigue I am having a hard time visualizing that, -- or else there will be flare ups due to -- not effectively dealing with the fatigue. Part time might work, possibly two part time jobs. Has anyone returned to work or tried to?
We have a terrible economic situation over here, now, and jobs that once were there, aren't --- and competition is more than it ever was. Many of the Wall Street people laid off have gone into jobs such as paralegalism, because it is still a professional position. Very interesting and new competition. I am somewhat ok, because of my experience, but -- in the past paralegals weren't competing with MBA's in Finance, for jobs. I have done temp work at other positions, since being diagnosed and it was fine. In temp work, you can limit how much you work, which with GCA is good. Have not worked in several months, however. Have done a good amount of volunteer work for the disabled, a non-profit I work with on a paralegal basis for no pay, and I have articles published and paid for in ABLE, New York, a newspaper for disabled people.
Wondering if anyone has returned to work? And how is it going with the GCA, the PMR and prednisone dosages? and the employer going along with some of the side effects of these? Would you let me know? Thanks.
wishing everyone health