Health

     I've been AWOL yet again.  I always mean to come back and start writing again but life has been so horribly hectic with everything going on.  It's been a year since I cut bio-mom out of my life.  Stress wise, it's the best thing I could have done.  The constant feelings of never being "good enough" or "worthy" of her time. love and attention were issues I didn't need to experience while dealing with other issues. 

     When I started writing on here, I knew I had health issues.... many joint issues and surgeries.  The why wasn't anything I had bothered to even try to figure out.  It was... and still is... my life.  Fall a foot, rip 7 tendons off 2 shoulders.  Yep... that's me.  2 tummy surgeries, 2 prolapses, back issues, fatty tumors, 12 joint surgeries and never-ending joint issues. Welcome to my life.  And then a doctor finally put it all together.  I was diagnosed with EDS... Ehlers Danlos Syndrome.  They affectionately call us "Zebras".  The reasoning behind it is that doctors are taught that when they "hear hoof beats to think of horses - not zebras"  In other words, think simple and common - don't go looking for the exotic.  But we are the exotic.  Misunderstood and misdiagnosed constantly.  People thinking that we "look healthy = we must be faking or we are healthy".  Our pain and issues overlooked and we're called "pain seeking or drug addicts", "hypochondriacs", of just plain "crazy".  We couldn't possibly have the issues that we complain about and how can people hurt in different places by the hour or week.  How can someone who (at that time) hadn't turned 40 yet, be looking at their 10th joint surgery.  How can we do the "parlor tricks" that come with being hyper-mobile and look fine yet be living in never-ending pain and collapse without warning.  

So what is EDS?  It's a genetic disorder.  It is a SYNDROME which is how so many of us go undiagnosed or misdiagnosed.  While there are similarities with people who have EDS there are 14 (currently) sub-types of which the "experts" have changed the number and name of the sub-types as well as the diagnosing criteria several times just in the last few years.  People who were considered to have Hypermobile EDS (hEDS) - some of them have now been dropped down into a sub-category known as Hypermobile Spectrum Disorder (HSD).  Since there's no genetic marker for hEDS - from what I can tell, it depends on the doctor and how he feels you fit the current criteria.  Good luck.  Some people have all kinds of issues with docs and support.  I've been fairly lucky that I've had good luck with finding decent docs.  My doc came to me with a diagnosis and since then, I've had 3 other docs confirm.   There are genetic markers for some sub-types but not all.  Even people with the same sub-type might react differently to the different treatments (of which there are many and differing ideas even within the medical community of what works).  We have different co-morbidities (different other diseases that come along with the syndrome).  Our collagen is faulty.  Some people say ... well, take collagen or collagen substitutes.  I had (what I thought was) a good friend tell me to "just take vitamin C and you'll be cured".  Yep.  Taking vitamin C encourages collagen production.  The problem being... "normal people" who make collagen make cake mix.  People with EDS make brownie mix.  So even if I took a supplement to make more collagen (like Vitamin C), I'd make more brownie mix.  It's not going to change what my body makes.  Adding more flour to a brownie mix doesn't change it into a cake.  Adding more brownie mix to brownies doesn't make a cake.  You just have more brownies.  And what makes it harder is no one knows yet why we're defective.  We just are.  All they can do at this point is manage the symptoms and damage and different docs who are "specialists" can't even make up their minds or come to a consensus as to what works best.  Because for some people PT is king.  You build the muscles up to where you incur less damage.  And maybe that works for the younger ones suffering if they catch it before too much damage is done.  But what about people like me?  People who have already done more damage to their body (unknowingly) than can even potentially be fixed.  Well, sometimes PT works, sometimes it doesn't.  Depends on the joint and the amount of damage that I've already done.  Depends on if the PT has ever heard of EDS before.  Anyone want to do an experiment, just out of curiosity - ask any or all of your docs if they've ever heard of it.  Let me know how many of them have any familiarity with it at all. 

     So the current excitement in my life.... Joy at getting a walker.  One of the ones with a seat so I can get out and about more.   The other joy was finding out I wasn't crazy.  Yep.  Find out I have a syndrome with no cure and a death sentence and be happy.  Because there is a reason I feel like this.  There is a reason I've gone thru all this.  My body is defective... not my mind.  Ok, maybe my mind is a little defective but I wasn't imagining all the hell I was going thru.  Now I just go thru hell wondering when the idiots in charge are going to mess with my medicine and confine me to bed on a permanent basis.  But that's a rant for another time.  I really don't want to dwell on that fear right now.  The more idiots screw up, the more the idiots in charge punish the people they can get at.  They can't stop criminals from breaking the law because by definition... that's what criminals do.  And if they'll break 1 law - they'll break 10.  So since they can't control the criminals, they punish the innocent.  It's disgusting and a shame that this is what the world has come to.  I've lost several online acquaintances.  They committed suicide... They couldn't deal with the pain and the outlook of knowing it will never get better and there's no relief.  Quality of life non-existent.  Nothing to look forward to other than never-ending pain.  And if you've never had to deal with pain like that to where you can't function, can't breathe thru it, can't move, can't sleep, can't function to where it feels like your whole body is going to explode- congrats to you.  Take the worst pain you've ever felt.  Imagine that you live with that non-stop.  Never-ending and that's all you have to look forward to then take away 95%  of the people that have been in your life.  Because that's what happens when you become disabled and can't get out and about to socialize - your friends and even your family do a disappearing act.  You're no "fun".  You're "never around".  You "never want to go out".  FALSE.  We would love to be around.  We would love to go out.  We are simply incapable.  So people just abandon you.  So you're trapped in a pain-filled hell mostly alone. 

Welcome to our world. 

    

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!  

We're growing

     When I started this blog, it was just me and 5 kids.  I went looking for step-mom blogs.  Mostly because I needed to know that step-moms weren't all Attila the Hun like the one my kids had.  Randy's wife was a piece of work.  Her name was Dawn.  She had 2 kids and didn't want my kids around to interrupt her psychotic need to take over my life.  Literally, she moved into the house Randy and I shared within hours of the kids and I leaving.  My kids would call their dad and she would refuse to put Randy on the phone saying things like "you can just talk to me, I'm your mom now".  Randy never got messages that the kids had tried to call and eventually Dawn's obnoxiousness made it to where they didn't want to call.  When Randy and Dawn got married, they had a huge wedding.  7 attendants on each side.  Dawns kids were in the wedding - mine weren't invited.  Then when we saw them post wedding - she spent the entire supervised visit telling the kids about their wedding and the cruise and trip to Disney that she and Randy took her kids on.  Yeah - that went over well with my kids.  Not.  It was a systematic destruction of the relationship between a father and his children.  Followed up by having her kids start calling Randy "dad" within months of them getting together.  Before her divorce was even final.  
     Anyhow, I went looking for step-mom blogs.  I knew that not all step-moms were manipulate, hateful women like the one my kids were stuck with.  I wanted to find and follow those women who were loving, supportive women who wanted their step-kids in their lives.  And I found them in spades.  Loving women who went to Hell and back for those bonus kids that they didn't have to love yet did with a fierceness equal to the way I loved my kids.  They were moms in every aspect of the word.  Just like my mom had been to me.  Biology didn't matter at all.  They dealt with egg donors who were as psychotic as my kids step-mom and my egg donor both are.  These wonderful women gave me hope and kept me from becoming bitter.  I found them.  I followed them.  I became friends with many of them - even off our blogosphere.  They supported me thru episodes of crazy with Randy and Dawn, then when Dawn became another divorce and Randy got with Monica who modeled her behavior after her predecessor.  She was as hateful as Dawn and another one who didn't want my kids anywhere around. They helped keep me sane as my sweet little babies became terrible teens with attitudes and mouths to match.  They were there when my middle son became a teenage father and my joy in the birth of my first grandchild.  
    And then for a many of years my life became seriously boring.  My kids grew up.  Moved out.  Moved on.  Became productive members of society and left me without much to write about.  Life was hectic but yet semi-normal.  Randy went to prison and was gone for several years.  No attempted contact with the kids.  I begged him to make things right.  Told him to make the effort before it was too late.  He kept thinking he could do it "tomorrow".  And when he got out and he had Hep C and liver issues, his sister - Sheila- remembered he had kids.  Those same kids she had ignored and pretended didn't exist for so many years were suddenly of interest.  She called Tim and asked him to donate 1/2 his liver.  A phone call that didn't end in a way she appreciated but one I expected.  (still glad I didn't bet the kid that $100).  Life was busy yet in a way boring and I quit writing.  And, let's all be honest.  FB came along and we all jumped on that bandwagon and lost this very important community of support....  

     Well in the last year, my life has turned upside down and sideways,  In some ways - it's been a good thing.  In some ways... I'm still trying to survive each day.  Elmer is growing up and becoming independent and an adorable young man.  He is still loving and sweet but all into friends, video games and sports.  He has been joined by a new cousin this last year - little Jay.  Yep - after 14 years, Jay and Dani had a baby.  A little miracle boy who is as sweet and loving as his cousin, Elmer.  Another Grandbaby for this Memaw to love on.  Tim finally found the one that drives him nuts and makes him happy.  She is perfect for him and I'm happy for them both.  I'm also happy that come August, they will give this family our first little princess to love on.  Our first girl. Bows and lace.  Or as Tim posted : "Now accepting donations for anything pink, purple, bows, and bail money".  And after 6 years, innumerable obstacles, and tons of heartache from Amy's family - my baby is going to be a daddy.  Now let me tell you ... as a mom that is a thing of both unmeasurable joy and at the same time... a kick in the teeth at how old I am.  My baby.  My sweet little boy who used to tell me "mommy I hold you" when he wanted to get picked up.  My little guy who used to tell me that he needed to "rememberize" his spelling words is going to have a baby of his own.  Now, I have no doubt that he will be an absolutely wonderful daddy.  Both of his nephews adore him.  Elmer was not exactly over-joyed that he was going to have to share "his B" but B and Amy made sure that Elmer knew he would always be very important to them.  I have no doubt that they will continue to let Elmer know how special he is.  
    On the other hand, my mom died.  And that could fill pages all in itself.  Grief is funny and ugly and on some days - overwhelming.  I think I'm doing ok then the next thing I know, I can't breathe from the pain.  And I never know when those waves of overwhelming pain are going to hit and crush me.  And Randy died.  And that is a different kind of pain.  A dull ache of regret that he didn't see his boys grow into men and become dads themselves.  A sadness that he never got to enjoy the pure pleasure of becoming a grandpa, of having little arms squeeze your neck till you can't breathe while telling you how much they love you.  Grandchildren are our reward for not eating our young.  They are the bonus we get for not either killing our teens or committing suicide while living in the teenage battle zone.  They are the reminder that we did something right in life as we watch the joy our children have in their own kids.  And Randy and I made our peace before he died.  We talked things out and if anything - became friends again.  He shared a lot there with me at the end.  Asked to come home.  A request I couldn't grant.  Now, a part of me wishes I had.  He tired to make things right there at the end.  But he ran out of time like I had always warned him he would.  In a way, I also grieve the loss of the egg donor.  For all her crazy, I always felt (what was probably an unhealthy) a need for her approval and acceptance.  I never got it but for some reason, I wanted it.  I guess its that need of the unwanted child needing to not feel unwanted anymore.  Like I said - unhealthy obviously because all I did was to get hurt more as I tried desperately to please a woman who is never going to be happy or pleased with anyone.  Her husband can't ever do anything right.  Her kid can't ever please her (of course, he is an abject failure but that's beside the point).  I spent years bashing my head into a brick wall trying to be accepted by someone who rejected me as an infant and all I did was waste my time.  
    Anyhow, in all the chaos, I found my "voice" again.  My fingers seem to know what to say even when I never know what I'm about to "talk" about.  So I'm back to my therapy couch or better known as a keyboard.  Typing out things to work thru them in my head.  Trying to figure out where life will take me next.  And trying to stay sane in the midst of all the insanity that this world has come to.  God bless.