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Old 08-04-2017, 11:01 PM   #1
Pandasmommy13
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Help!

I was just diagnosed with Vasculitis within the last month. I have another post on here but I'm in desperate need to get advice. I have never even heard the word Vasculitis until now. I also was born with Cerebral Palsy so I was already limited physically and now this Vasculitis has made everything worse. I can't even stand up on mh own for more than about 4 minutes at a time. I was walking with a walker at home but now I can't even take a couple of steps. I'm so scared. Some of my family and friends don't seem to think I will keep up my therapy to get better. My sister is a nurse and she's already acting like if she's not on me to do my physical therapy everyday I will just give up and never walk. It hurts me that she doesn't seem to have any confidence on me that o will do my very best and that's all I can expect. She's never been sick or in pain on her life so she doesn't understand my struggle. O also don't understand why she wouldn't at least give me space to process all this emotionally let alone physically as well. Yes therapy for all this is going to suck but I'm strong. It would just be nice to have her encouraging words. Not words telling me she has doubts I will stick to it. Thank you for listening!!
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Old 08-05-2017, 12:14 PM   #2
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Re: Help!

Hi there. You sound like a very strong individual and I am sorry you are going through this.
I think its important to try to separate your sister from your loving family member than from her job. Nurses, nurse. lol. Nurses, regularly are there to encourage patients and to be strong for them. They also have allot of medical knowledge and they tend to push it around sometimes thinking they are doing it in the patient's best interest.

What I would suggest is that you talk to your sister and let her know that you love her as your sister, but that you have a medical team you trust. That you need her to be supportive and be your sister, but not to treat you like one of her patients...she might understand. Show her that you know what you are doing and talk to her about your plan which you have discussed with your doctors...keep her informed, but dont let her get involved to the point that you stop realizing she loves you and wants the best for you.

I have an autoimmune disease. My step-mother is a doctor. It was nearly impossible to get her to back off when I was first dx. She thought she knew everything...but, she isnt a neurologist and I trust my doctors! Eventually we worked it out and now she is my number one support system! It takes time to get people to realize that you may be sick, but you are not stupid. You just have to show them that you have a plan and that you are working your plan...eventually they will go from giving unwanted advice, to asking 'how are you doing?".
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Old 08-05-2017, 06:06 PM   #3
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Re: Help!

Thank you for your kind words and advice. I know my sister loves me and only wants what is best. I'm more of an emotional person where she is more analytical. It doesn't make either of us wrong, just different. I just wish she would have a bit more confidence in me. Thanks again and I hope your condition is doing better as well!
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