So Many Illnesses and Doctor Shopping, Bills & Collections

[Ohiomom89]

Hi,

24 year old BPD dd has been living with us for 23 days.  Yes, I'm counting.  It's HARD!  Fiance' of 3 + years gave her the boot; tired of her working a month here and there and quitting/being fired (ALL for VALID reasons!      He really tried his best, but was an enabler, too.  She just wants to be a stay at home mom with 3 kids and this perfect life and white picket fence.  Dropped out of college so many times, and tech schools, to the tune of thousands from her dad & I.  She does have a CNA license (certified nursing assistant) and that's what she's been doing for 4 years, except according to her, she is physically disabled and cannot do the work (then WHY didn't she TRY HARDER in school?).  She does have one legit complaint:  a rare fusion of some bones in her wrist not caught until middle school when she played volleyball.  But the hand specialist said she just needs to wear a brace and can do totally normal things (there is no surgery to separate bones).  One brace was custom made (back then) but now she's been through probably 25 or more as "none of them work."  So now she has convinced herself BOTH wrists are bad, and because she has always been a flexible girl in childhood, she is SURE she has this rare, GENETIC disease called Ehlers-Danlos Syndrome (nobody in my or my husbands family has it, and, it is diagnosed in childhood due to the breaking of bones, sprains, bruising easily, etc. She was the picture of health, only visited the doctor for regularly scheduled childhood immunizations and the rare cold).  Long story short, she found ONE doctor (after going out of network and wracking up thousands in medical bills) who said "well, Maybe... .a geneticist would have to confirm."  She is telling all her doctors it HAS been confirmed, and she was even able to get a Disability placard for her vehicle (says for school, carries heavy stuff, can't chance a fall on her wrist, etc.)  She hasn't been to school in over 2 years.  She has had, probably, 13 or more CNA jobs the past few years, none lasting more than a few months.  She came to us after she got the boot from her fiancé, with maybe three sets of clothes and less than $10 in her bank account (she has auto-deducts of about $250/month).

We have given her strict terms before she came:  4-6 applications to be put in every day, keep her room clean, help around the house.  A move out time of Labor Day weekend, which we thought since CNA jobs are pretty easy to find, she'd have a few checks under her belt and we'd fork over rental security deposit at most.  Well, almost end of July now, no job.  No 4-6 apps a day (has maybe 5 out there but says nobody called, which we'll never know, fiancé is nice and keeping her on his cell plan until she gets on her feet).  Room is a disaster.  Watches t.v. all day.  Sees light on dishwasher to be emptied, says "will get to it" but doesn't.  Yes, we've talked, yelled, threatened... .goes in one ear and out the other.  Had to gas up her vehicle twice and the extra food is a lot.  Caught between rock and hard place:  needs vehicle to go job hunting (no, hasn't been) and there is no cabs or public transportation in our semi-rural areas.

She has ONE job on the fishing line and needs to have stuff done by tomorrow at 10 a.m., but to my knowledge, she's lacking a few things so will not be able to start on Monday.  My husband is furious and has homeless shelters printed out;  I am not as keen on that, although I will support his decision.  My therapist says she'll hustle WHEN SHE HAS NO OTHER CHOICE.  I know this is true.  To me, right NOW she has no choice; we give her no spending money, etc.  But yes, she does have food and a roof over her head and gas in the car we bought her 7 years ago for high school (and it's on its last legs).

She gets an attitude with me when we're alone, but never with her dad.  Unfortunately, he works a lot and I am with her the majority of the time.  I feel as exhausted as if I have a toddler in the house, or several actually.  Now we're contemplating forfeiting our hard earned, saved up money for a planned vacation to New Orleans next month to get her set up in an apartment we both can 99.999% bet she will lose within a few months.  But it's about 25 miles away from us, and lots of job opportunities if she goes for them. 

I guess the mom in me says she's not dealing with a full deck; my husband says oh yes she is, plus some.  Knows exactly what to say/do and to whom to get what she wants.  She didn't even shed a tear over the loss of her fiancé!  I cried for a week!  She said "well, I had time to cry, I saw it coming a year or two ago!"     

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[thefixermom]

Hi Ohiomom89,

I have been in your shoes several times.  My DD38 just moved out about 3 weeks ago after living in virtually the same circumstances as you (except no fiancé)... .broken agreements, messes in the house, watching TV or computer most all day, up all hours of the night, sleeping till noon, job after job with "justifiable" lay offs and quiting, injuries, supposed health issues... . and lots of back talk and put downs from her toward me.  She was better this last time she lived with us but still very difficult.  She was supposed to be here from April - June.  She moved in late March and left 2nd week of July.  She had a former roommate entice her to move across the country.  I didn't think it was the best choice for her to make but now that she is gone, I'm giving thanks for it.  We have put tens of thousands into her, too... .various schools (LVN, nail tech, university... .) and various rescuing, paying rent, bills etc.  Even this last time I was tempted to cash in some of our emergency savings to get her an apartment locally. THANK GOD I DIDN'T!   Now that she is gone and I've had time to reflect on how she treated us, me especially, and the unsettledness it was living with her,  I can 100% say with confidence I am done rescuing and she is not moving back.   She had my number and she had it good.  I was so full of care and concern and worry. Like you, I saw her as ill and in need of my unconditional, non-judging support.  However, when she needed to rise to the occasion in front of someone she would do it.  And she invested a great deal of her time telling people around town what an evil horrible person I was.  None of my family bought into it, but many of her friends/acquaintances did.    

We counted the days, too. And once she was on that plane (barely made it, having waited till the last few hours before it departed to do her packing, and destroyed our house in the process), we spent days putting everything back together.  I love her with all my heart. I hope to God she has success, finds love and has a good life.  As for me, I am burnt out and recovering in a real good way.  I don't pine after her like I did in the past. I don't call her or initiate contact. Instead I'm spending time with other people and activities that bring me joy.   I'm 60 years young and plan on having one more "second childhood" before I leave this world, God willing.  My handsome 20 year old nephew invited me paddle-boarding on a local lake.  I said, "You're surrounded by  lovely young ladies and hip young friends, why would you want to take me paddle boarding?" and he said, "Because you're the coolest aunt ever and I want to hang out with you!"   Now that made my day and helped cement in me the type of people I want to invest my time in... .appreciative, positive, and reciprocal.

I feel so much for you ,Ohiomom89, having just escaped a situation like yours mere days ago.  I can tell that my DD was bad at 24 and here we are 12 years later, lots of money into helping her and it's no better.  Maybe you'll get lucky and find your life back sooner rather than later.   I have no regrets because regrets don't help me since what's done is done and I like to think it was all for a good reason and personal growth/lessons. Once we know better, we do better.  I just know that from now on I am protecting our future and planning on having some wonderful vacations ourselves one day.  

xo  

[kelti1972]

Hi Ohiomom:

I really laughed alot when you said you cried for a week.  Oh my gosh how I can relate to that.  We kicked our 27 year old out months ago and he ended up homeless for awhile and in a three month program.  Anyway he is back with conditions.  Started out with alot of conditions and now it is down to attend therapy and DBT or he is out.  I know he is smoking marijuana again, but don't want to know, where, when, etc.  He is working part-time, but up all hours, don't want to know where, who etc.  Staying out of his business as much as possible.  As long as he does his therapy and DBT he can stay and he works.  Those are the three main conditions and, of course, no drugs in or around house.

I cried and cried when he left 12-step program and went back to old friends.  He has started resisting or complaing about DBT, so don't know how long this is going to last.  We have no money to give him so he better get motivated.  He has been doing, somewhat better with chores, not great but better than before.  It is so hard and challenging this illness.  A fine line knowing how ill they really are and what they can really do and where we enable versus where we really help them get on their own.  It is just a slow process and hard.  I try to take a day at a time and catch myself when I am obsessing about him and change my thoughts to try and obsess about me and takeing care of me and improving my personal life and get out of his and get out of his way so God can take care of him not me.  Best to you!  Kelti

[Earl Hegge]

I got so addicted to the board and I couldn't believe that I came across a thread mentioning Ehlers-Danlos Syndrome.  It says it is more than 90 days old and not to post, but I hope it is okay to post anyway 

I am so sorry to hear about your situation, as it sounds very difficult, but there are so many things that sound like red flags in it to me so that I just had to post.

I am not writing to say your daughter does not have BPD -- she may very well.  In fact, plenty of people with Ehlers-Danlos Syndrome have or develop mental illnesses over time.  They are finding high comorbidity with especially anxiety disorders and PTSD in the syndrome but their theories are now that it is mostly due to doctors not understanding this disorder and maltreatment and developed fear of maltreatment and more injury.

So many things about your daughter's story reminded me of my own.  No one in my family was diagnosed.  I was an athlete and played volleyball -- no broken bones ever during school.  I was just flexible.  I was super strong.

I was great in school and did really well.  Everyone was sure I was going to be a great success.

And then suddenly I just felt sick all the time.  No one knew what was wrong with me.  I felt like I was dying.  I would go doctor to doctor.  At one point they wanted to label me as a hypochondriac because they could not find any tests that were wrong.  Of course I am older than your daughters so they have learned a bit more about EDS.

Thankfully for me a PT noticed I had hypermobility and a hokey integrative medicine doctor said "Oh that can cause a LOT of pain in joints".  By my late 20s I had arthritis in those joints, but so light that no orthopedic "specialists" could see anything, but by 30s those joints when they actually went into them were utterly destroyed.  I was so sad, because if anyone had listened and not labeled me as mentally ill (or at least not as ONLY mentally ill) then I might have survived it and not become permanently disabled.

It took me until over 35 to get sent to a geneticist.  After I went, I got diagnosed and he was horrified.  I was a 9/9 beighton (which is the hypermobility scale which is an objective measure of either hypermobility OR injury in EDS) and had so many of the symptoms.  Like for instance I had really smart doctors tell me I didn't have stretchy skin so therefore I did not have it.  I told the geneticist this and he just sighed and shook his head.  He said, "Oh I wish they would LEARN!"  I had the other skin type and didn't know that stretchy skin was only one possible type.  There are so many types and so many forms.  I wanted to cry that I didn't get diagnosed until my later 30s.  It could've saved me so much anguish and so many mental health referrals.  My one blessing though was that I had a supportive mom.  She was in pain so always believed that I was in pain.  My dad just ignored his pain.

I kept trying to work, but I kept failing at it, and eventually things got so bad I became fully bedridden and fully disabled.  Even before I got diagnosed.  And the doctors still thought it was all in my head -- and this ironically is in one of the cities renowned for being "good" for EDS, but I never even got a referral to genetics until late in life.

Now they are starting to refer more.  My geneticist (who is the top in my state) says that almost everyone who gets the referrals these days has it - some variant of it.  He says that they were so misguided about it being "rare" and he wishes the CDC and AMA would change their very misguided "facts" about it.  In the UK and in many other countries they are starting to say that it is a spectrum disorder and it may be more than 5% of the population that has it and that is not rare by any stretch of the imagination.  My geneticist has already diagnosed more people than would be humanly possible in our city if the rates were correct by 100-fold, and now his waiting list is more than a year.  The most famous geneticist in Chicago, Tinkle, recently got up to a 4+ year waiting list and then they just cut it off altogether and said they just need MORE geneticists for EDS because it is not rare anymore.  So sadly your daughter probably could not be able to get to see a geneticist if she tried, but could get it validated by a rheumatologist depending on where you live -- Ohio?  If so Ohio is good, but again long LONG waits if you go genetics.

But anyway, what I was going to say, I was the first person to get diagnosed in my family.  Then my mom, aunt, uncle, grandmother.  We weren't even looking so we left my brother and father alone because they were healthy and comparatively we thought they were "fine".  But at a doctor's appointment my dad was there and had been really sick and the person looked at his skin and then asked his history -- then asked "Um I'm sorry to ask but are you cousins?" to my mom.  We never considered it because we thought it was only my mom's side that carried it, but it turned out that my mom AND dad had it, and sadly my brother got diagnosed, but only after his esophagus tore at age 28 and he almost did not survive his surgery (he is over 10 years younger than me).  So quite literally my WHOLE family has it.  All diagnosed after me and I was the earliest.  Took me 13 years for diagnosis after my first major injury in one joint and it just cascaded throughout my body and ironically all of the problems started in college with pain because I was sitting more to study for the first time.  Sedentary / less sports -- ironically -- leads to weakness, but at the same time we can't do aggressive sports because that causes injury.  Kind of a catch-22.  But your daughter reminds me of me too, because out of college which I struggled to finish a LOT then I went and did similar types of work like CNA because I thought it would be healthy and then my body just fell apart.  It happened SO fast.

And then like I said it was 14 years til I could get a diagnosis.

If your doctor got a diagnosis at all, confirmed by a geneticist or not, I'm guessing there is something majorly wrong with her joints, and if she is 24 then I would be shocked if someone would even mention it if there wasn't something majorly wrong (because you have to have SEVERAL bad joints for them to even consider a referral).  Again, not saying any of the other stuff is excusable, but her EDS story sounds very consistent with not just mine, but almost every other EDS story.

There are only 2 forms of EDS that get diagnosed in childhood (and even then they often get diagnosed late) and in those the parents usually get charged with child abuse, so unless you were charged with CPS for abusing you kids for them having some unusual problems, then she probably has one of the other forms.  The other forms are extremely common but the doctor ignorance is astounding.

I live in the capitol city of one of the top research hospitals in my state -- and still only about 50% of doctors have heard of the disorder, and only about 1% of doctors know how to treat it.  It is far more common even in my city and in non-research hospital cities for people with EDS to get (mis)diagnosed with fibromyalgia, lupus, chronic fatigue syndrome, munchausen, hypochondria, and then parents to be charged with abuse or diagnosed with munchausen by proxy if it is a child with EDS.  Children are rarely diagnosed.  In fact my advocacy group is trying to file a complaint against a doctor in my city because a family drove FOUR hours to see him for their TEEN daughters who have EDS and just needed his genetic confirmation -- their whole ancestry has it confirmed and they are so severe they keep getting injured in school and are not being offered IEP.  The geneticist (non-expert one) said "No I cannot diagnose them until after age 18".  Left them without help for the kids so now they've gotten more injured in gym class.

Anyway, sorry about the long post, and I'm sure your daughter does have something going on because clearly there are some issues.  But from the sounds of it one doctor noticed a problem in her joints and a lot of your information about her sounds exactly like the life course of EDS.  I really hope that she gets help for BOTH her physical and mental health needs!