My Emotions and Physical Pain After Diagnosis

Hello All, my story, maybe not so short, is that my first symptom was tremor in my hands finally severe enough to make using them difficult in most tasks. The second give away was falling, and that broke bones, no less than a dozen. I thought I needed new shoes, then the falls were very frequent. This went on for about 6 years.

Then finally I shattered a hip, leading to many months of hospitalization. I didn't know at the time it was also my pelvic bones, another 2 months in the hospital. I had to relearn to walk and walk up steps. But I was determined, so I did it. Fifteen months of rehab. Thinking I was finally diagnosed with Parkinson's disease (PD), I was horrified, but at least I had an answer which led me to have hope there were things I could do to medicate the progression.

My family blamed me for my diagnosis

When I was in the hospital right after surgery I got a very nasty hateful email from my older sister blaming my falling on "risky" behavior. I became very angry and it stole a lot of energy I had had for physical therapy.

Since then, each family member blamed me for the thing they felt most comfortable with and "rational" theory they could come up with for why I am disabled and just kept getting worse. I was called a drug addict - I haven't taken pills for years for lupus, rheumatoid arthritis, blood clots, cancer, and on and on. Each pill had side effects.

So then I was blamed for taking those and the PD symptoms were attributed to that. Also causing kidney failure, from lupus which is sometimes that happens with kidney disease. Honestly it was weird to have my own family try to make me feel I was delusional and crazy.

Dealing with another diagnosis

I was falling from PD. Walking toe to heel not being able to stop until I fell, actually having the sensation of running. I was unable to turn and walk a different direction, falling some more. A month ago I was diagnosed with stage 3 kidney failure, which I know is from lupus.

Since then I have been angry at my sister. Then my 2 middle-aged daughters got on the band wagon, a cousin telling them their mother was a drug addict and had balance issues. Then I was accused of being finally off my hinges.

Distancing myself from my family

Little by little I just had to detach. My grown daughters cause the worst hurt. It became so toxic, when I don't hear from them I stopped calling them just to say hello. This is called gas lighting, when you start to believe these things might be true.

I really am devastated. I always loved my family and now think it's delusional to hope they will ever be a comfort to me. I continue to text with my 4 grandchildren. I have often believed that emotional pain is the worst, now I believe it is an impediment to healing.

My husband is taking care of me, but it's hard to go out with a walker, which I need at all times now and I'll probably be in a wheelchair soon. My daughter wants to put me in a home. ...So on and on ... I thank God for my husband, my funny pets, and a few friends. I live out in a rural area, a far cry from Queens where I was born!

Emotional abandonment

I am not afraid, I don't know why. But the emotional abandonment is beyond me. I am bitter. My negativity is potent. I was ok in the hospital however gross that was ... and it was. But I had the drive to get up and go to "work" (physical therapy) with some enthusiasm.

Well, so much for the family support that is supposed to help you through as I feel these awful things. A pain clinic wanted to put me on narcotic patches and I told them no. I hope someone can relate and not feel so singularly abandoned. On top of which my car was donated to a charity. My garden, which was so beautiful and my pride, is dead. I cant thread the needle to sew.

I have to remember to hold on to myself and be true to myself, and grateful to my husband, so grateful as it stole much of his life as well.

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