Archive for the ‘Coping’ Category

The sun going down on me. Photo by Lori Schneider.

The sun going down on me… Photo by Lori Schneider.














The myriad of health issues I have are now battling for center stage with my failing relationship with my only real-life friend, my husband. OR it is most definitely contributing directly to it.

[But that is another topic in and of itself  – one that doesn’t belong in this blog. It just would be REALLY great of my husband, and alleged best friend would understand these things, and want to work on our relationship. But his lackluster responses to my pleas for us to work on this don’t give me much hope, nor reason to be. At times he acts as if nothing is wrong – yet I know deep down that he knows what our relationship has become, aided by my mysterious health issues and consistent issues finding medical care, is not much more than coexistence. BUT – what do you do when your partner in life doesn’t make the effort to try to improve your relationship? Ouch.]

These health issues stole my career paths and any options I had within my fields of expertise. I tried for years to do something from home – to use my  skills and experience to help others – for free.. But, no one wanted my help  – this devalued what I had made of myself, who I was, what I had accomplished, and what I thought I could do that would be meaningful.

Every day, I never know what symptom or issues will pay me a visit and hang out to make me question the validity of my existence.

Ahhh, and how these things – I mean things that used to annoy me, or cause me psychic discomfort – have changed me. I have lost myself. My raison d’être, my sunshine, is disappearing. The sun is going down – on my life.

For 40 years, things that got in my way were motivating to me. They made me fight, they made me strong,

Now, these things paralyze me.


I often will just plop down on the floor where ever I am when these feelings hit me, and just stare at a fixed point.  (It is a grounding technique – in more than one way. Ha Ha.)

No longer can I throw myself into a project, a creative endeavor, a research topic. I find that these distraction techniques/coping mechanisms just increase my physical symptoms. And of course, these involuntary reactions just increase my doubts about my ability to survive this predicament.

What I need now is the me from 5 years ago – before I lost my self to this hell. But alas, she is gone. Yup – thrown in the thrash, compacted and burned. A deep “thanks” to all of you – you know who your are – all of you so-called patient advocacy groups that made promises that I could write for your website/journal, all of those false friends that hurled criticisms at me, and all of you “health care providers” that violated that basics of that all important Hippocratic Oath by failing to treat me as a human being – you all helped do this to me.

One person can only fight for so long – alone – before all these things take their toll.

“He who has a why can hear with almost any how.”
so goes the famous Nietzsche quote.

I have lost my WHY.

And that makes it hard to find that HOW.

Here we go again – something that links directly to doctor-patient communication, and doctors attitudes about their hard-to-diagnose patients impacts us in ways they never imagine. Perhaps the health community should rethink their approach to patients like us…and maybe then we won’t have the issues that this blog by Michelle of “Living With Bob” discusses.

If you have a chronic, but invisible illness, you may have noticed that there lacks (for most zebras) the rally and support experienced by those with more visible, well-known conditions.

Friends and family members makes passive-aggressive comments about your constant “issues.” Or, they stop including you in their lives, period.

Michelle, wrote an excellent post about this yesterday.
Please read it here

Regular readers of my blog will know this is something I’ve had to endure for several years now.

What baffles me is how ignorant the doctors are…you present with several bizarre, subjective (not objective!!) and tangible conditions, a history of hospitalizations, surgeries….yadda yadda yadda…and STILL they question you, almost implying you are imagining all the problems you have.
The day I can will my blood tests to be abnormal (as they are) is the day I’ll be Queen.

My support comes mostly from strangers I’ve only “met” through the interwebs – others just like me, with exactly the same conditions – or others that are wonderfully empathetic. But no one IRL.

So, what has your experience been?

Have you been abandoned by friend and family?
Do doctors constant question you about “really” being unable to work?

YMMV – I’d still love to hear your about experiences.

LAST week was National Invisible Chronic Illness Awareness Week!
As is typical with chronic illnesses, I was not able to complete this due to some symptom issues-until now. It IS still the 15th…so I hope I get some credit for getting my post in under the wire!

I found out about this from fellow blogger, Lindsey, of Musings I’d a Dysautonomiac – you can read her post here:

Invisible Illness Awareness Week also encourages bloggers to complete the “30 Things About My Illness” questions – see my answers to them below.

1. The illness I live with is:

Autonomic Nervous System Dysfunction (which comes with a mega-long cast of not-so-fun individual issues such as intermittent gastroparesis, severe dry eyes; small nerve fiber neuropathy; labile blood pressure/sudden drops or increases in BP, chest pain, tachycardia/palpitations, etc.); Unspecified Connective Tissue Disorder (joint pain and swelling, liver inflammation, vision disturbances, sun sensitivity, livedo reticularis, Reynaud’s Disease); Sacroiliac Joint Dysfuction; Chronic Migraines; Delayed Sleep Phase Disorder/Severe Insomnia

(Sounds like I belong in a nursing home…at 49.)

2. I was diagnosed with it in the year:

I was diagnosed with “autoimmune issues” and “Reynaud’s” in 1987…the rest just kept on coming.
The autonomic disorder surprised me in August 2012 with 3 ER visits and a week long hospital stay which lead to my diagnosis,

3. But I had symptoms since:

I had the migraines since 1975 and the sleep disorder since 1968 though…

4. The biggest adjustment I’ve had to make is:

Finding a reason to just keep going on, day to day. Half of this stuff took away my ability to be dependable enough to continue my career. Then the rest of the illnesses took away my resilience and perseverance,

5. Most people assume:

Probably that I’m lazy or just trying to get sympathy or attention.

6. The hardest things about mornings are:

I never know how I’ll feel – what joints will hurt or be swollen, if my SI will be out of place, or if my BP will be too low or too high – or how my heart will respond when I sit up. I never know when – or if – I’ll get any sleep at night, so my morning may be your afternoon.

7. My favorite medical TV show is:

It WAS “House.” It was one of the most medically accurate, yet the most unrealistic shows in the medical genre. There is no such thing as a doctor that is a “diagnostician” like House. We all just WISH there was! I did learn how to do differential diagnoses charts from the show, which my docs seem to appreciate – they show the connections between all my weird medical issues.

8. A gadget I couldn’t live without is:

My Interferntial Stim Unit (I have 3. My favorite is my Empi IF3 – as it is VERY strong).
I’m also fond of my iPad Mini.

9. The hardest part about nights are:

Wondering whether or not I’ll get to sleep.

10. Each day I take:

Lots of breaks to lay on the floor to get my heart rate to come down, and my BP to stabilize. It also gives my SI and painful joints a break.

11. Regarding alternative treatments I:

Have tried literally just about EVERYTHING out there – including, but not in any way limited to: reiki, chiropractic, all types of massage, acupuncture, Thai yoga, Chinese herbs, more supplements than I care to think about, EMDR, CBT, “voodoo acupuncture” (done by a counselor without my knowing what she was doing) – all a HUGE waste of cash – except for massages, as they do feel good, but aren’t a cure by any means. I honestly believe that most alternative treatments that “work” do so due to the “expectancy effect.”
Sorry folks, but I’m a scientist.

12. If I had to choose between an invisible illness or visible I would choose:

Definitely VISABLE. I am SO SICK AND TIRED of being told, “you look just fine to me.” If I looked sick, maybe I’d get a bit more attention from the medical professionals as well, and people would respect the fact I was sick and let me sit down on the subway so I don’t have to sit on the floor (gross) to keep from passing out when my BP drops.

13. Regarding working and career:

Whats that? My career in the legal field was put to an abrupt end when I wasn’t allowed to recover from my 4th back surgery -it was “come back full-time or leave.” I managed to get my biology degree and worked briefly in biotech until my medications and pain made it impossible for me to maintain any sort of schedule. Now, with the addition of the autonomic disorder – I can’t even work a volunteer job. I’ve tried. All this medical mayhem makes me unreliable – which is NOT a personality trait I had before and is completely attributable to my medical weirdness.

14. People would be surprised to know:

I really don’t want to go on living. It’s just getting worse. I watched my mother decline miserably. I don’t want to get there.

I’m so hurt by the people in the so-called support networks that choose to ignore any facts I present to try and help them learn about their conditions and how to appropriately advocate for themselves…my docs tell me I should use my knowledge to help others, but no one wants my help. It leaves me feeling quite useless.

15. The hardest thing to accept about my new reality has been:

I will never be the person I was on track to being 12 yrs ago.

16. Something I never thought I could do with my illness that I did was:

Went zip-lining in 95 degree heat in the California desert. It was awesomely and very difficult and worth every pain, palpitation and the post-sun welts and migraine.

17. The commercials about my illness:

There aren’t any…unless you count the ones that cover the autoimmune stuff like RA, which my connective tissue disorder fall under). They are so unrealistic. If you take those type of meds (“bio logics”) that they advertise, you CANNOT do the things they show the people doing. You can’t get bruised, bitten by bugs, or travel to places that don’t have health standards equivalent to the US. A good friend of mine died because he was on one of those meds – for “moderate RA” (an autoimmune disorder) – had a minor accident that resulted in an internal bruise – missed by the docs – infection developed – and he died 24 hrs later. So the commercials for the autoimmune illnesses are… INACCURATE.

18. Something I really miss doing since I was diagnosed is:

Having a purpose. (See. 14, above)

19. It was really hard to have to give up:

Working out with weights.

20. A new hobby I have taken up since my diagnosis is:


21. If I could have one day of feeling normal again I would:

Find someone to go country dancing with – not line-dancing – but two-stepping, swing dancing – the couples stuff. After a good long workout in a hardcore gym. Then eat a HUGE steak and lobster meal. And have an alcoholic beverage or two, preferably with little umbrellas.

22. My illness has taught me:

To be grateful for the tiny things I can complete that most people do without thinking.

23. Want to know a secret? One thing people say that gets under my skin is:

When people say I must be OK if I’m out driving or going places.
When people say in a snarky way, “I wish I could lay around all day.”

(I stole this next part from Lindsey-because it’s EXACTLY how I feel): Really? Because I wish I could go to an office everyday and make a difference. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time.

24. But I love it when people:

Are nice to me and understanding. Which is VERY rare here in MA.

25. My favorite motto, scripture, quote that gets me through tough times is:

“He who has a why to live can bear with a kist any how.” – Nietzsche

26. When someone is diagnosed I’d like to tell them:

Get ready to be your own best advocate. You are in for a battle with almost every medical professional you will meet. Good luck finding doctors to help you – but be willing to take advice from people like me that know how to navigate the system, know how to find the good docs, and know how to research the issues. (I really get upset when people on social boards plead for help, then don’t respond when I offer to help them. I guess they just want to whine.

27. Something that has surprised me about living with an illness is:

No one wants to be friends with a sick person. Period.

28. The nicest thing someone did for me when I wasn’t feeling well was:

My husband lets me nap whenever. He understands “sleep debt.”

29. I’m involved with Invisible Illness Week because:

I want people with chronic illnesses to start being proactive about taking control of their healthcare and the course of their illnesses.

My negative experiences with the so-called support networks haven’t been at all positive – if anything they support the continuous whining and complaining – which is quite UNhealthy. Some of the boards sound like a game if “can you top this?” – each post about aches, pains, pills and total cluelessness about the conditions they have is “worse” than the next!!

I don’t see how the enabling and encouragement of constant complaining is considered “advocacy” or “raising awareness” or “support.”

I believe that by teaching people to do responsible research, to gather the facts about the illnesses they have, and what they CAN do about their issues IS advocacy and support.

30. The fact that you read this list makes me feel:


I find it quite humorous that the prompts I recommended for this blog challenge the hardest ones for me to write!!

About 80% of the time, I live in the Pit. It’s become a comfortable nest, of sorts. Sometimes, I don’t really want to get out of The Pit. Living life as it supposed to be lived is not possible for me, and no, that NOT a choice. It’s a “prison” sentence, and that prison is my life.

I nap. Or I try to nap. During the day, I possess the ability I lack at night – to clear my brain, quiet the frustrations, and relax into a state of semi-consciousness. Perhaps, this is added by the fact my BP runs incredibly low most days. The beta-blocker I take to calm the chest pain and dypsnea also drops my heart rate to bradycardia levels, and lowers the diastolic of my BP. For some reason, this doesn’t happen at night. It’s as if my brain rages against me and will do anything to keep me from relaxing at night.

I watch a good TV Show – one that gets me absorbed into the story. NCIS, Monday Mornings, Smash, or even a good Top Gear episode.

Anything that makes me laugh makes The Pit much more tolerable. Most of the BadLipReading videos, especially the Michael Buble, “Russian Unicorn” video, or any of the 2012 political ads/debates can almost make me pee my pants.

I play some mindless games on my iPhone as well. Angry Birds, Majohg, Where’s My Perry – anything that engages my brain enough

Unlike a lot of others that have chronic illnesses, I don’t find hope, solace or joy in platitudes, unicorns or fluffy kittens. 30+ years of counseling just taught me how to live in denial – that the “me” that existed just wasn’t good enough, pretty enough, healthy enough or “right” for this world – therapy (and I saw many different therapists due to my frequent moves to different states) just taught me how to pretend to be someone I wasn’t in spite of my experiences and health issues – and has left me even living in an even deeper and MORE convoluted Pit of Despair than years ago. Now, on my own, with the help of the SuperBetter app I referenced in an earlier blog, I’m learning to just be me and stop wearing so many masks and facades, and stop trying to behave as someone i’ve never been.

Until doctors decide that I’m worth their diagnostic efforts so my life will cease being useless (my bad for not fitting into their little diagnostic boxes), i’ll be residing here in my Pit of Despair.

20130422-201631.jpg Drawing by Kurt Schneider


Yeah, I can be a REAL ass when I'm feeling really down about my diminished health status. Unfortunately, having chronic illnesses (yes, more than one) means that I have very few acquaintances. Heck, I don't really have anyone local I can call a "friend." The fact means I have no one to vent all my frustrations to – no best friend's shoulder to cry on, no one to listen to me rant about the crap that people with chronic illnesses rant about: can't find a do that listens or seems to care, losing the life you once had, feeling like an utter and complete useless blob, feeling like an incredible burden to your spouse/significant other.
So, who gets the brunt of my anger, sadness and self-hatred? My wonderful husband.
Even though my anger and hatred isn't direct AT him, it doesn't sound that way to him, and what I say and how I say it REALLY hurts him.
Last night, I learned just HOW MUCH what I say hurts him-deeply: about feeling like a financial and emotional burden; wishing i could just end my life; being a hunk of uselessness; how everything I touch turns to crap (the reverse Midas touch curse"); how ugly I have become…
I honestly didn't realize that what I was saying was reflecting back on his choice to be with me and for standing by me during all of my medical struggles.
I hurt so badly now because of how deeply I've been hurting him.
Tears aren't enough.
Saying "I'm sorry" just doesn't cut it.
How do I undo the pain I've unintentionally caused the only reason on the face of this planet that love me?

If I ever find out, I'll let you know.

I love you, K. I hope we with all of my hrart, soul and being that we can learn to work together against these medical miseries, and remember that we are on the same team.

(This is essentially a rehash of a blog written in response to a prompt from the LAST WEGO Challenge – WEGO – we need more NEW PROMPTS and challenges!! I gave you a list of many – but I can come up with more to avoid duplicative entries every few months….)


A letter to my illness…which one? Take your pick.

Hey Messed Up Body,

What the hell is going on?
We survived a childhood full of sexual, emotional and physical abuse – but FOR WHAT?  Yea, yea, we’ve heard it over and over – “You’re a survivor – look at all you’ve had to deal with.”  (If it was such a big deal then where was the help for ME when I was suffering daily rape between ages 2 to 14, near daily beatings, and cowering in closets and kitchen cabinets with a mon=ther that was too meek to stand up for us and get us out of that situation. Where were the friends and relatives and teachers and social workers and activists for ME and my meek mother? No where to be found. I guess being a plain ol’ white kid make me not worthwhile.

Then I hear about the trauma theories, made popular by Bassel Van Der Kolk – it actually changes the structure of the brain; and trauma is stored in the body. If that’s the case, then where is the help for ME? My brain must be scrambled eggs by now. I’ve reached out to so many agencies so many times, even Dr. Van Der Kolk’s very own agency. What do I get in response? “Call you insurance company – go see a social worker!  Well I have, and look how much good 30 years of counseling with about 10 different “social workers” has done for me – not much, if you ask me. It’s left me bitter, angry and full of hatred towards my self and my sick body.

Wait – is THAT it?

Does complete self-hatred make the body sick, or is the body sick because of all the crap t has been taking for 49 years?

I get why the ulcers at age 11. Makes sense. It was a cry for help.

Just like the self-harming that started around age 10 (see,  I was WAYYYY ahead of the trend!!)

The migraines at age 12  – a response to the stresses of daily trauma or an actual symptom of something physiologically wrong inside my head?

The autoimmune stuff that began to surface, also at age 12 – as I always said to myself – it IS the ultimate form of self-hatred – the body against itself. Then why do I have to literally go into battle with physicians just to ge them run tests to prove that I have some very bizarre autoimmune blood markers?  Why is it that you have made it so that doctors don’t believe me and want to brush me off to the side.

Where is MY Dr. House?

Why is everything you throw at me have to be something that doctors can’t figure out? All you do is pile on the stuff and that just adds insult to injury? WHAt about the pre-cancerous lesions I had on my cervix, oddly at the same time my coworker was experiencing the same thing? I watched her get sliced open, have the doctor tear up her intestines and leave her with a life time of bowel issues, not to mention she was rendered infertile, at age 26. Once again, I had to do a large amount of burdensome research at medical libraries (there as no internet back then) to again show that the standard of care for such things was simple laser ablation, and NOT invasive techniques like my poor co-worker endured. Then shortly thereafter, the mysterious ovarian cyst appeared that I actually had to write a letter to a senator to allow me to get the surgery that again, was the standard of care for such a thing – not a massively invasive 8″ incision the included the removal of my intestines and increased the risk of infection that was being offered to me by the local-yokel doctors.

What is with the genetic malformations in the nerves in my lower back and legs?  Is it just a joke to watch me get disrespected by numerous doctors, surgeons, anesthesiologists, chiropractors and neurologists – to be called a “drug-seeker, ”  to be accused of being out for “secondary gain,” only to finally find a doctor after years and years of MY OWN research that could image these areas and see the anomaly and surgically improve my pain? (Thank you Dr. Filler!)

Then af age 44, I began developing extra lumpy tissue underneath both arms, It was so very painful, and I couldn’t wear normal clothes. I got passed from PCP to NP and finally to a surgeon, who thank God, had seen the condition before – something that affects about 2% of the world population – axillary breast tissue. It was successfully removed and once again I had arm pits, but once again, that surgery wouldn’t have happened without my extensive research into the matter, proving it wasn’t cancer or a “normal” part of my anatomy. Then, 2 years later, my breasts suddenly and painfully begin to grow – 5 additional sizes, and then some. For no reason. MY PCP shrugged, and sent me another PCP, who sent me to se the NP that specialized in “lady parts,” who referred me to a surgeon who them sent me to a breast specialist and another surgeon. In the meantime, I strongly suggested, based upon the research I had found, that I see an endocrinologist. Surprise, surprise – she found a tumor on my pituitary that could be responsible for spewing out all the additional and unnecessary hormones that had been causing my breast to grow – and probably caused the underarm breast tissue to grow as well. In addition to the brain tumor that was found, a lump in my left breast was found a removed – benign, but nonetheless, had I not doe my own research and been proactive enough to insist that see certain doctors, then neither tumor would have been found.

Why is it that I am constantly thrown into the hands of doctors that don’t seem to know the meaning of Continuing Medical Education, or eve feel the need to keep up with the advances in medicine in their fields? ANd to get this poor care in the alleged “Medical Mecca” of Boston MA?  What a complete joke.

The ultimate proof of how much YOU hate me, stupid body, is this Autonomic Nervous System Dysfunction, with the delayed gastric emptying, (which means being hungry and not being able to eat because my digestive system doesn’t work properly). he wildly labile blood pressure, the strange electrophysiology of what is allegedly a “perfect: heart (according to the cardiologists), the sudden syncope followed by hours of immobility and bradycardia, the horribly dry eyes and dry mouth, and  the painful intolerance to cold resulting in livedo reticularis, the severe dry eyes and constant dry mouth. And, of course, the rabid unpredictability of it all.

I call it GPS disease….

                                                                              Livedo reticularisLivedo reticularis

Honestly, this condition is the last straw. I can’t take living like this anymore. My husband can’t handle the issues either – he told me so today. He said he as “done.”

SO, thanks you lousy body, you’ve driven so manypeople away, and now you have destroyed this last relationship of mine as well? Does years of sexual abuse by many people lead to an autonomic nervous system disorder that waits 35 years to reveal itself? If so, why? And why NOW? Isn’t the genetic anomaly stuff in my back and legs, my brutal sleep disorder that makes everything else much worse (Delayed Onset Sleep Phase), the pituitary tumor , the shoulder problems, the totally weird way my body cannibalizes my teeth (resorption), the whacked out way my breast size keeps painfully increasing,  and now the icing on this fallen cake –  my hair is “officially” falling out – telogen effluvium.

(no my head, but a darn close sample)

(noy my head, but a darn close sample)

God dammit Body, why do you hand me problems that require ME to do all this research – and then do battle with my doctors just to figure out what is going on? Honestly, it feels as if YOU are torturing me on purpose. What the heck did I do to you?

I hate you and what you have done to my life, First, you let me be a filthy sex toy for my father, neighbors and later, so-called friends. Then you continue the degradation by afflicting me  with the most bizarre illnesses you could conjure. We are on the same team, in case you haven’t noticed. You have made it so I have nothing left. You have forced me to do time in this bizarre prison camp for crimes I didn’t commit – what more do you want? Unless you are trying to tell me something..that there IS NOTHING to fight for anymore. Because I have nothing left to give. You have taken it all away. The food I give you feel like a waste of time and money. Why I continue to care for you is beyond the scope of my comprehension. If you were a separate entity, you would be jailed, punished and ignored.

Figure this out quick, or else you won’ ave me to torture any longer.

I cannot believe there is a show on TV called “My Life is a Lifetime Movie,” and dammit, why haven’t they called me yet? My life, documented on video, would be more than one Lifetime movie. Which pieces of my life would get the best ratings??

Would it be the movie about my childhood, the 14 yrs of sexual, physical and psychological abuse by my father, and how I, despite all the ugliness and my mother’s denial, became a super achiever and a teenage alcoholic but still ended up in college at 16. Highlights include how I survived several “date rapes” (some with impressive dramatic flourish) and the life lessons I learned by hanging out in an Irish bar in Pensacola, FL.

Or, would it be the sequel to that one, about my bizarre first marriage at 18 to a Navy officer and how I “grew up” during his deployments, and how he didn’t like the grown up me, and thus propelled me into my first divorce, my “downward spiral” and the discovery of my fucked-up-ness and my first journey into therapy and how I discover just how much my dysfunctional childhood has messed me up.

Perhaps it would be the movie that follows the path I travelled to become a police officer, how I tried my hardest to rise above the effects of my disgusting childhood, and the oh-so-very fucked up people (other cops) I worked with and our sad, comedic, and almost unbelievable adventures with every nook and cranny of society. I first encountered a physical limitation (Rayauds) during this time, and I got a raw dose of gender-based harassment (legally known as the “hostile work environment”). Acceptance of females in law enforcement will never exist. Never. There are some very gritty reasons why I left “the job,” and even so, not a day goes by that I don’t miss wearing the uniform.

Or, it could be the stand-alone movie that follows my adjustment to life after police work, my serial monogamy, my entry into the twisted and beautiful world of EMS (emergency medical services), and the fantastic friendships, devastating betrayals and immoral forays that happen in all EMS communities. Yeah…I’d definitely TiVo that one….

Then, there’s the absolutely un-Disneylike thrill ride I’ve been on since 1994. My sociopathic (officially diagnosed!) now-ex-husband made my life into several episodes ofCops, and my continued struggle for perfection through physical training and workplace achievements to try to compensate for my poor choice of s spouse and the God-awful embarrassment of facing a 3d divorce. The abuse he inflicted on a daily basis was so psychologically twisted and emotionally damaging, I find it hard to believe I lived 5 and a half years with the fear of never knowing what he would do next. I eventually escape into what’s left of my life, optimistically at first, only to have my social network crumble, my dear mother suffer a disfiguring stroke and suffer for years in her disintegrating condition, and then after she passes, my health turns against me. The Lifetime moment in this saga is finding, by pure coincidence, my amazing husband, who has stuck by me through all tragedy, surgeries and soul-swilling depression for the last 11 years.

I’ve not included the gory details in my brief descriptions, and there are far more plot twists and turns than any other Lifetime movie has ever shown, and much more unconscionable bizarreness than any Lifetime movie writer ever thought of.

So, Lifetime, what do you think?