I am currently 27 years old and brand new to this or any site like this (I'm new) I was diagnosed with Lupus SLE and ITP at the same time when I was 13 years old. (because clearly puberty for a girl isn't enough by itself) in January I will have had both conditions with no remission ever for 15 years.
I have a good life i work, i have a dog and a house all the good stuff... but in terms of relationships how do you deal with, the after bruising conversation? I feel like i am constantly telling anyone i dare to get intimate with no really you didn't hurt me I promise, but even in committed relationships sometimes more it really freaks people out? I am just tired and i know that sounds depressing but I feel like every year that goes by and every new medication that doesn't work takes an emotional toll on me and has ruined some pretty serious romantic encounters. I am not trying to do anything crazy just be an adult woman. I am very sick of doctors telling me I am fine, since my platelets hover from about 20-80 thousand, "please let me have your body be well under the standard number of platelets for your entire adult life and zero normal morning afters, then see how you feel "
Any advise would be soooooo helpful!!
Thanks in advance.
I can't help you with the conversation part, as I was not the patient, but was the mom of an ITP teen (now an adult in remission). We found that bruising, in general, could be lessened by taking supplemental vitamin C. It also helped decrease the frequency of nosebleeds. It won't raise your count, but seems to help with vessel integrity somehow. Daughter took the capsules, as the chewable tablets are a bit too tart and dusty. Add a little at a time. If you take too much, it can cause loose stools, but that resolves with backing down the dose a bit. Hope this helps.
I share your frustration! My count is higher - around 70-100, but I’ve had truly severe bruising for the last four months. I’m not in a relationship right now, but I can’t wear shorts or swim with it looking like I’m a crime victim. That’s also really kind of annoying - I get asked with each new appointment if I “feel safe at home,” and I say yes, I live with my 73-year-old mother! They always seem like I’m not telling them everything. I realize that their job is to care and that abuse is common - I’m just whining a bit and being over sensitive.
I could not imagine any romantic partner looking at me right now and not being concerned. It’s very frustrating. I hope you find an answer to your bruising soon. I know how much it affects everyday life.
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