Trying to Cliff Notes family history at MD's office

[isilme]

Just kinda rambling here.  I am realizing that even after decades of NC, my poor life preparation by my BPD parents still affects me.

Been NC with BPD dad since he kicked me out when I was 19 - 1997.  HIs family ignored me from birth to age 15, when he dropped me on their doorstep as he was divorcing BPD mom, and for about 4 years I sort of finally had "family", but when he kicked me out, they could not see it was weird and strange to play some sort of game using the concept of disowning your child as a tool to instill fear and obligation and control, so I had to go NC with all of them.  I don't know a heck of a lot about family medical issues or history. 

Been NC with BPD mom since I was about 30, so for a decade, and I know a bit more because she was on the verge of Munchausen's I think, liking trips to see MDs, partly because she could talk them into getting her fun opioid pills.  I know she had bad lady issues, migraines, and may have given herself a peptic ulcer from drug overuse. 

She was the one committed to taking me to doctors when I was ill when I was little and a young teen.  She got me some of the same Rx's as hers, so I could learn to be an addict just like her, since being a little her was my job in life.  Dad reused, telling me only weak people wanting attention go to doctors and I was a waste of money. 

My high school years had many instances where I'd be pretty sick with a sinus infection (I get them a lot, a few times a year, plus bronchitis, pneumonia) and I was too ashamed to tell him - growing up with BPD parents, I pretty much learned to fend for myself anyway, so it never struck me as odd that I never told Dad I was sick, or my step mom.  I just dealt with it.  talking about it was "selfish".  I self-treated with OTC that I could buy when babysitting money, and my high school teachers let me sleep in class - I got A's easily, and I think they knew something was off when I'd come to school deaf in one ear from sinuses and hoarse from sore throats but were afraid to intervene.

Anyway - I've skated by till my 40s with minor health issues.  A few more bouts of pneumonia, a bad case of the flu, allergies and sinus troubles forever, myopia, simple stuff.  Depression I keep at bay, insomnia from about childhood, weight issues I could usually keep steady if not slowly lose, but mostly I avoid the doctor, still.  I can't shake the feeling I am wasting money, being lazy, being like my mom. 

In the last 2 years, a very noticeable decline in my overall health has been taking place.  I figured everyone felt the same way, and I was just weak and lazy when I hurt so badly I can't get out of bed, or simply did not get any sleep at all or am running a fever, have a migraine, I assumed everyone else I know is just stronger, more able to push through.

I did not realize the struggle I have to simply get out of bed each day is NOT normal.  It's more than hitting 40+ years old.  It's more than a touch of arthritis, a bit of muscle soreness.  That everyone else does not feel like they might have the flu each and every morning as they struggle to get dressed, or almost fall from bad equilibrium putting on pants.  This past year, I feel so bad, I finally went to get help.  I thought I had pneumonia again, in January - no cough, but daily fever for 3 weeks before I went in, and exhaustion, could not breathe well.  I get winded walking to my car from my office.  From bringing in groceries and need to sit before they can be put away.  From simple, stupid things, I need to take breaks now. 

Docs were stymied, put me on every antibiotic they could prescribe, blood work, chest x-rays, CT scans of my lungs, they come back with a few ideas that I "may" have had typhoid fever, but since the bloodwork shows every single infection I've had (Typhus from my early 20s, multiple bouts of pneumonia, etc) it was not certain that was what was making me so weak and tired now. 

I ended up at an allergist/immunologist this week.  The interview was tough - I don't know much family history beyond what I wrote above... and I still get embarrassed having to say I don't talk to my parents, and finally just included that they were abusive during the interviews.  I really think the late night violent fights they'd have that I felt I had to stop are a big factor in my insomnia now, and I think I need to get where I can mention it if it's relevant to the conversations about my ailments.

Thank goodness this allergist seems to want to actually help, and not just toss pills at me.  He determined I am not crazy - I DO have some sort of asthma issue.  He gave me a pre-test, a treatment, and a post-test, saw my breathing numbers improved, meaning I have some constriction in my airways.  So I now have a rescue inhaler to try as well as a long term keep the airways open inhaler to take 2 times a day. 

After a lifetime of being told I have allergies, and even being tested at age 15 and being told I was on the verge of allergies, I learned at the moment, I have only ONE.  Cats.  I am not getting rid of my cats, and he said my main problems seem to be something else - my body reacts to things as if I am allergic when I am not and releases too much histamine all the time.  He said it's Mast Cell Activation.  He said if he can treat me, I will not feel like the flu every day.  I will sleep better.  And I will not be exhausted.  Like no more sleep for 12 hours still tired exhausted.  And I might get to where I can lose weight.  And stop having daily migraines.  Less brain fog, and even less emotional instability.  An overload of histamine can do all of this it seems.  Apparently, I was on just enough antihistamine to keep my head just above water - I need a sort of super-systemic approach where he will treat histamine in several ways in several systems, even the GI tract, to get my body's inflammation down, then I may be able to decrease the number of meds I take. 

I am wondering if this is what I've had my whole life if I have just been on the verge and only noticed it when my BPD husband's own health issues increased my stress bough for this to get bad enough for me to finally see a doctor about it.  And not give up.  Maybe I am lucky my husband got so sick it pushed me this far.  I might never have felt desperate enough to go to a specialist an hour away for help. 

[GaGrl]

What a relief you must be feeling to find a medical professional who "gets it"!

[Harri]

He determined I am not crazy

Well, we all knew that but I too am glad he is willing to look deeper into your problems.  What a relief!  I hope this leads to you feeling better.  I know how hard it is to have chronic health issues and to have to push through them every day.

[Kwamina]

Hi isilme,

I'm glad that your experiences with this allergist/immunologist have been quite positive so far.

The way your mother seemed to 'love' going to the doctor and the negative messages your father conveyed to you about people going to doctors, are two factors I think can definitely affect you. Given this particular history, I can understand why you find it hard now to really acknowledge any health issues and would be reluctant to go to the doctor. That makes you seeking help now in some ways a double victory, since you are getting help and are also perhaps overcoming some of your 'programming'.

She was the one committed to taking me to doctors when I was ill when I was little and a young teen.  She got me some of the same Rx's as hers, so I could learn to be an addict just like her, since being a little her was my job in life.

This is quite disturbing behavior that your mother tried to get you on meds you might not have needed at all. Your father's behavior was almost like the other extreme.

I think they knew something was off when I'd come to school deaf in one ear from sinuses and hoarse from sore throats but were afraid to intervene.

Do you feel like your teachers could have done more for you just based on what they were able to witness? They might not have known what was going on exactly, but do you feel like the signs they could see warranted a perhaps more proactive response from their side?

I can't shake the feeling I am wasting money, being lazy, being like my mom.  

These are powerful negative messages you've internalized. When other people are sick and/or go to the doctor, do you also feel that they are being lazy and wasting money? Or do you feel like that label only applies to you?

He said if he can treat me, I will not feel like the flu every day.  I will sleep better.  And I will not be exhausted.  Like no more sleep for 12 hours still tired exhausted.  And I might get to where I can lose weight.  And stop having daily migraines.  Less brain fog, and even less emotional instability.  An overload of histamine can do all of this it seems.

Let's see how things go then, the first signs seem promising. I hope this will indeed lead to improvements in your health and overall well-being

The Board Parrot

[isilme]

I feel like crying it was so good to finally have a name that might apply to how I feel, and this doctor says he believes ina whole body approach, not just treating each system separately.  I am still going to the pulmonologist next week to get a definitive word on the small nodule in my lower right lung, and see what they say, but if I tell them I'm seeing the allergist and he's determined I am having an asthma response to things, I hope they will just allow me to see him instead of doubling up on my trips to the "big city". 

Yes, dad's response was the polar opposite of mom's.  And I know from 15-19 years old, I painted him "white" because I had to.  I needed to believe one of them was good, and therefore the other was bad.  As a child, it switched, as an unstable triangle, them versus me, me and mom versus him, him and me versus mom, repeat.  I didn't want him to hate me, and he hated her, so I had to adhere to being the opposite of her as much as I could. 

I don't care if other people go to doctors, and fight to get my BPD husband to see his.  The label is for me alone.
 I know it's irrational, but apparently, that statement and the neglect that came with it that I felt (feel) I deserved as being unworthy of basic care is such a part of me.  I know I am not a terrible person, I try to follow my understandings of morality and do unto others as I would have them do unto me.  Maybe that's not the greatest guide because I expect very little to be done unto me? 

I don't feel I am a worthwhile person.  I'm not sure that makes sense.  Being treated like a doll to be picked up or discarded on a whim hurt me quite a bit, with no family, friends, to help buffer it.  I was alone with two crazy people, and then as a teen, no one thought dad was crazy.  He was "angry" but it was all "normal" to them.  I had to go NC with dad's whole family, step-siblings, half-siblings I'd just met, aunts, uncles, cousins, grandparents, also all just met, because they all lived with the crazy dysfunction for so many generations it was normal.  I was literally the outsider coming in at 15, seeing them without the veil of normalcy and seeing they were unhealthy even by my limited standards. 

Sadly, BPD H has some of my dad's idiosyncrasies.  He's far less on the order of magnitude as far as BPD goes, and he's never had quite the position of authority a parent has, so I can be a bit more assertive as needed, but he hates going himself, and want me to go, but partly just so I can "get better" and stop disrupting our lives which rely quite a bit on me having actual energy to keep up with things.  Laundry.  Chores.  He has pointed out I make him go so I need to go myself... but then gets concerned about how many medications I've been on.  I am trying to get him used to the idea I am apparently going to be on a LOT to get my system reset for a while... Singulair, 2x Xyzal, 2x Zantac, 4x Cromoylin, plus asthma medications daily.  He actually said he thought my allergies were "caused" by being on "too many antihistamines".  Actually, I wasn't on enough it seems.  I was taking just enough to eek by with a low feeling of malaise until this winter and last hit me pretty hard.  I know this, I can't take another winter feeling this bad. 

So, I am now trying to go, but also know I can't rely on him to be rational about me going, whether he will insist on joining me, and also whether he will be cranky about the whole process and yell at me going to and from the location.  He is going to insist on taking me for blood work, I am just going to plan to be yelled at some point for standing too soon after the draw, something that he will freak out on me for.  For him, I know it's worry.  It still sucks as it happens.

Teachers - I have no idea what they knew, I just had a few defend me when I'd doze off on accident in my books and classmates would try to make a thing of it.  It was a smaller town than the one I am in now, the one my grandparents lived in for decades, where my aunts went to high school, my cousins, and so people knew my dad and they knew I was a scared rabbit around him.  Some thought he was a "great guy", but I think the fact I went home to an empty apartment and basically lived alone for serval months (he'd come in late, change clothes, leave early, head back to step mom's other tiny town 30 miles away), still managed to be an honor student, never had a parent show up to events, maybe had grandparents come, maybe not, I was obviously the black sheep as they lived 3 blocks from the high school.  I had a friend's parents off me to come to live with them - I think they gleaned enough to see I lived in a bad place.  I could not see it then, their offer confused me, but now, yeah, my friend's parents knew something was up.  The way my face would pale if I wasn't home on time because I joined them for dinner, and knew he'd have been calling the house to check in on me.  The way I'd have to insist on certain things to stay out of trouble.  Even in a day without cell phones, he kept tabs on me, controlling me, even from 30 miles away. 

[sklamath]

isilme, I'm so proud of you for all the effort it took to get to those doctors and keep pushing for answers. That is no easy feat when you are used to putting yourself last and had reached such a point of feeling so tired. I am so happy for you that you finally got some answers!

I have a loved one with MCAS. It's been a long road for her to find a diagnosis and appropriate treatment, but things are fairly well controlled at this point. Yes, you will need medication, and it will probably take a while to figure out, but there is hope out there.

[I Am Redeemed]

I'm so glad you were able to see a doctor who seems to actually care about what is going on with you. I also think this is a great victory for you, considering the double polar opposite dysfunctional attitudes that your parents demonstrated. Getting proper health care is part of self care. I'm so proud that you were persistent in getting to a doctor who can find the right treatment for you.
Having chronic fatigue, flu like symptoms, and feeling so miserable is definitely not just a sign of being over 40. I'm glad you could recognize that and keep pushing to find a medical reason for your symptoms. I'm over 40, too, and while I notice a drop in energy, more muscle and joint aches and back pain, it isn't anything like what you describe. You don't deserve to live that way, especially if there is a cause and treatment for it. I hope this is the beginning of the road to feeling much better for you.

[HappyChappy]

Great news Isilme 

You can start training for the Olympics again.

[isilme]

Thank you, all.  I guess even when I think I've conquered the messed up wiring inside my head, I'm going to find more bad coding.  I can't figure out why it's so hard to follow the exact advice I'd give others.  I guess my feelings of self-worth are still really, really bad and so I don't "deserve" help.  And I relied so much on things I can do for myself, I freeze up when I need others. 

[sklamath]

I was thinking some more about your posts, and the possibility with any chronic illness that you may have a fair number of specialists and intake appointments in your future.

Do you think it would be helpful to have a standard response with regards to the family history questions? I don't want to project/read too much of my own issues into what you wrote, but I find certain questions get under my skin and cause me to either over- or under-share, and it helps if I go in with a plan or prepared answer. For example, are you comfortable with saying that there was a history of abuse (and if you are, that is a good, honest response!), or would you be more comfortable simply saying that you are not in contact with your birth parents and can't provide any further information (also a totally acceptable response)?

With the idea of further appointments in mind, do you feel like you'll be able to get the most out of those visits with your BPD husband present vs. not? Do you have a trusted friend who might be able to accompany you instead?

[isilme]

sklamath,

I have some "preprepared" responses I use at work and in public as needed, "my family is toxic on both sides so I am no longer in contact with them".  The insomnia issue is a somewhat recent "ah-ha" moment for me, WHY I tend to sleep so badly or only feel "safe" sleeping at certain times - Dad's crazy, frightening nighttime, suicidal/murder threatening behaviors, and I suppose also being left alone in an apartment on my own overnight a lot of the time, plus being stressed on never being late for school, all seem to point to hypervigilance. 

One thing about this weekend on the MCAS treatment: I think I slept, like a normal person.  By Friday evening after 4 doses of one of the new medications that are supposed to inhibit the histamine responses in my body, I felt a type of relaxation that felt alien, the insane itching had stopped finally, and I actually managed to wake up like a normal person, not one ready to cry because sleep has been elusive and it's time to stop trying.  I can't explain how it feels to be halfway into having the flu every single day, and then for it to back off. 

As I've done more MCAS reading over the weekend, it seems childhood stress can be one of the factors, in addition to genetic predispositions.  I believe I had some uncommon childhood stress. 

Having my husband at medical appointments.  I can't say what I think about it.  He wants to be in the room when I get my next pap smear... I was like, no.  I worry I won't be able to talk honestly about frankly the amount of stress his public illnesses can cause - diabetes and kidney stones.  I never mention the BPD to anyone in RL.  I think talking enough about the normal levels of stress for a caretaker of someone with diabetes, kidney stones, plus chronic depression gets enough of a point across.  I can't do that if he's in the room, the BPD embarrassment and shame would kick in for him.  He lives in fear of embarrassment, even if it's frothings that aren't' even embarrassing to a no BPD person.  They are to him.  Forever. 

And the stress of home and work are a big part of how my candle has been lit on too many ends, so I need to mention them. 

Also, he only half listens to his own doctor.  He insists I go because I actually listen and remember what the doc tells him - he is too nervous and feeling judged to pay attention.  I don't need that with my own visits, he won't pay attention, will get cock-eyed ideas from what's said, and likely pick a fight later. 

I appreciate him wanting to go.  I do.  But I am not sure I can deal with it on top of my own worries and concerns.  He isn't really able to comfort me, not the way I work to comfort him.  He tries, but you can tell it's a bit of going through motions, mechanical like he's counting the seconds till he can stop. 

[sklamath]

I am so happy to hear you are feeling that much better already, just by finally being able to get some sleep! Hooray!

Also good to hear you have some pre-prepared responses. And I agree, the insomnia piece does seem important, and I think you are onto something regarding why it's still so hard to sleep in peace. And that "childhood stress" piece of MCAS...that would certainly fit.

It does not sound like there's any value added for you to have your husband at the appointments, to say the least. I hope you can negotiate to go alone or with someone you trust so that you'll be able to get the most out of it.