Disease

So, in the midst of all the chaos over the last several years, the docs finally came up with a label for all my quirky joint issues.  I mean, it's only taken 30 years and 18 surgeries for them to get it right.  What I have used to be (or maybe still is) considered part of the Ehlers-Danlos spectrum.  Luckily for me, I don't have the issues with my skin that are so prevalent with EDS.  I get the cigarette paper scarring, the indented scars, the longer healing time.  But I don't have elastic skin nor do I tend to bleed as badly as those with the total EDS syndrome.  Always something to be thankful for right?  What I have is still part of the EDS spectrum, just a new formal name.  Lucky aren't I?  They call it "hypermobility spectrum disorder".  What is it?  My joints aren't put together correctly.  Nothing that I haven't been dealing with for years.  Just a new name.  Basically, I have a collagen issue in my connective tissues.  I tear easily.  Like seriously?  I already knew all this.  I'm on surgery #18 I think it is coming up.  I'm more bionic woman than real human at this point.  My knees were equatable to those of a 90 year old woman 13 years ago.  I'm scared to hear where they're at now.  I snap, crackle and pop more than a bowl of rice crispies.  On the plus side.  I know why I'm falling apart.  I now have a name for my random heart spells and a way to treat them.  Heart spells?  Oh they're oh so much fun.  I go to stand up, my blood pressure drops to some ridiculously low level, my heart starts racing, my chest starts pounding, I break out in a sweat and get shaky.  On the plus side - I can sit down, eat something salty and drink some gatorade and it goes away like it came.  Quickly and quietly like a thief in the night.  Usually leave a headache behind but not a migraine so I can deal with it.  I'm actually extraordinarily lucky.  There are people in my support group who are wheelchair bound before 25.  Despite the docs telling me that I would have to use a cane or walker full-time by now - I don't.  Not full-time at least.  On the plus side - I know I'm not crazy.  I've gotten tests, seen a cardiologist and I have a treatment plan.  There is an actual name for why I end up in surgery every few years with something else in pieces and a joint I'm no longer able to use until they reconstruct something.  
     Here's the bad thing.  The heart issue - can be set off by stress.  The docs say "no stress!  Keep the stress to a minimum!".  Have they met my children?  Obviously not!  Some of them live to make my life hell.  Last night, one of the bonus ones went whining to their significant other because I said something to her about being rude.  She was. She expected me to do something that I would have done and I was going to do it.  But my point was that common courtesy would have suggested that she at least ask instead of assume and basically tell me that this was what I had to do.  Ummm no honey.  You're not my boss and physically this was something that could be a toss up as to if I could do it depending on if I was in a flare up..  I mean, I can't always even drive anymore.  I went over 6 weeks without being allowed to drive after my last surgery.  B was my hero since he ran me all over and took care of groceries and everything with never a complaint.  I spent 4 days in the hospital last surgery.  It was awful.  Amy had to work nights but came up every morning.  B slept in the awful, hard chair next to the bed.  Tim and Shayna came up and Shayna even had dinner with me.  Surgery - 15 min from where Jay and Dani live.... didn't hear from them.  They didn't come see me when I got home until they wanted to know if I would keep the baby.  With my arm in a sling and me unable to use it.  I am not looking forward to having the other arm done.  But the inability to move the arm without severe pain isn't leaving me many options.  
     Anyhow, the stress last night, set off the heart issues - of course.  Funny thing is - kid knows I have the heart issue.  Obviously doesn't care since he blew me up from his number till I blocked both him and his significant other.  Had him blocked on FB messenger from his blow up still from last month. (something else petty where he spent hours blowing my phone up until I blocked him). The thing is - everyone kept telling me that his girlfriend was the one running back to him and stirring the pot.  And I have stood up for her repeatedly.  Taking her side when the other kids have said that she was stirring drama.  I thought better of her than that.  I have taken her side more than once when the subject has come up with the other siblings and their better halves.  Yesterday, there was no avoiding the truth that the whole blowup with my son could have been avoided if she hadn't of instigated it.  He (of course) had to drag his brothers into it and talk trash about them as he was being ugly with me.  I know this is cryptic and I apologize.  His ugly knew no boundaries last night and it honestly all comes down to jealousy.  One brother has a small child and 2 others are expecting at the same time.  God forbid they all be happy for each other.  Instead we have one that is ugly jealous.  Now, according to him and his other half - they're not.  But the constant issues and pouting at a siblings gender reveal sure shows an ugly side of jealousy.  Then there are the comments about the baby showers and other little snide comments made.  If it's not jealousy  - they're sure giving a great example of what jealousy looks like.  So, PoTS episode (thats what my heart issues are called) last night and I let the kid get to me.  To where it was almost 3 before I could get to sleep (back up at 6) and ended up having slight issues most of the day today.  As of now, kid is still blocked and so is his other half.  Until my health issues calm back down, I have to keep them that way.  I am at the point where my health has to come first.  I am out of grace periods to give.  It has become very apparent that this child seems to want to push me into a heart attack and I refuse to let him take his hissy fits to the detriment of my health.  So I will disengage.  Guess I''m going to have to go talk to my doctor again and ask them if there's something else I can do when things like this happen.  Well, one of the boys is on their way here.  I have Fathers Day stuff for all of them.  Might not get to see him Sunday with his work schedule so we are playing catch up today.  Have a great weekend!