About Chrissy

July 2016: I was going to take this down and re-write it but decided, as long as it is, it’s important for people to understand many things that people who need answers, who go through chronic illness and are searching, live through. It’s isolating, embarrassing, judgemental, with everyone from your closest for your furthest, making both psychological and physical diagnosis of your predicament and how you can just get better or how it’s all in your head or worse yet, a personality disorder. I’ll comment at the end with current and correct diagnostic information.

 

 

My life is change. There is always another layer of stuff peeled away as life goes on.

Just when I think I’ve gotten my subconscious and conscious under control, something new shows itself to me, or rather my eyes can suddenly see something that’s been there all along.

This is a long-winded story simply because it is the introduction for two different blogs because I am both lazy and economical, or at least I like to tell myself that so I can keep doing things my way.

Before my parents divorced my memories of myself are sporadic and contradictory, flashes of a home full of screaming and fighting and yet, moments of being a smiling happy silly little girl. Once my Air Force father and stay-at-home mother separated, mother became sole custodian and it was especially tough financially and emotionally for her since it was the early seventies with four little girls in a tiny two bedroom apartment.

As a kid it looks like I had undiagnosed pediatric bipolar because I became the morose kid thinking thoughts like Why are we here?, trying to hurt myself, exploding with rage, or high energy, walking around the house while others slept, artistically inclined, reading all night and generally being a complete enigma to teachers and adults outside the family. My home life was chaotic with its own pitfalls, secrets, and things not necessary to name, things that can just be accepted and spoke around in the posts.

As a small kid I would steal beer when I was able and it was thought of as cute. Times were different then and the atmosphere fostered and misunderstood alcohol abuse and its effects. At eleven I asked for and received a six-pack for my birthday. Our family was an intellectually, lower economic, hippy one once my mother married my stepfather when I was eight years old. My poor sister caught so much shit from me when she spilled one during our card game. That was probably symptomatic of a bigger issue to come over time.

About the time I was in sixth grade, suddenly I put on weight in my center, my face turned exceptionally red,I got a hump on my upper back. I didn’t understand what happened to me. When I look back at the photos now, which are rare as I hid from the camera, I can see Cushings. The bullying was horrific. It was the seventies, reed thin (Remember Cherry Boone and Karen Carpenter dying to be thin enough?) was the ONLY look that was acceptable. I tried to hang myself in my closet between my school life and my home life.

By the time I was fourteen I was partying. The first thought I had when I got high was literally “I can see you but you can’t see me.” I felt free from caring about what people felt of me. I was making a spectacle of gossip of myself. Placing myself in dangerous situations, in relationships with fists and others dysfunctional behavior that never occurred to me didn’t belong in normal life, I lived high and drunk. Cutting, using meth, purging, not eating, and many miles of walking (I was too young to drive so I walked everywhere to get where I needed to go, anywhere to not be home) kept me in trouble, in danger, thin and on a first name basis with the State Troopers who would bring me home and drop me off (which was really annoying).

I’d always had health issues, and of course, being the weird girl, any of these things get swept under the heading of the drama of being strange, weird, drunk or all the above. You don’t take care of yourself and in dysfunctional families, illnesses like pleurisy, mono, asthma, chronic hives were really just oddly … I don’t know … not talked about or followed up on? When I would wake up some morning, my lower back would just ache and my urine was dark but because I never saw a doctor, I didn’t know that was unusual. I was a teenager and a drunk, being able to stand upright and keep my job at McDonalds was tough enough. I eventually even got fired from there and that’s not an easy feat.

At eighteen I alienated myself from everyone, having made a spectacle of myself to just about everyone within my circles in the county and a devastating, life-changing loss occurred. Depression engulfed me and I began to use or drink every day and rarely left the house I was living in, losing whole days in a pill-induced stupor, drug dialing people, crying and talking gibberish. When I hit my bottom, one of my few last friends who had any faith in me stopped talking to me and I asked for help. That was 1983. I’ve been illicit drug and alcohol-free ever since.

Starting therapy at nineteen was probably the best thing that happened to me in my childhood. That therapist saved my life. I rarely say things like that but she honestly did in the sense that she instinctively knew me and helped lead me. I was unable to communicate properly, unable to even tell you if I liked green beans or carrots. That realization broke me down one day. I didn’t know anything about myself, I’d always been told what I was to be and who I was to be so my singular identity didn’t exist. P.T.S.D. wasn’t diagnosed often then and I remember saying that I felt like I had been through a war. Waking up sometimes in my kitchen, or in the corner of my bedroom, trying to walk out the front door and the like was common place. Losing time was not unusual.

I had a round face, vacillated between a size eight to ten, self-hatred enveloped me. There was nothing more for me to focus on, no drinking to soothe me, no meth to keep me under calorie. I began rounds of diets, young men who told me I was fat and self-loathing that flamed with every pound I gained after losing two. My undiagnosed illnesses, both physical and mental were leaving me chasing my tail and in cycles so vicious I was still suicidal regularly. Refusing medication and afraid that if I accepting psyche meds would destroy my sobriety and clean time, I remained in a cycle of destruction for a long time.

When diagnosed with bipolar at thirty-two, I acquiesced to medication finally. I was on the medication treadmill for so many years as well as medications for my chronic hives; atypical antipsychotic, mood stabilizers and antidepressants. These are now being admitted by the medical community to change metabolism, not simply change appetite (When in a pinch, blame the patient, especially if mentally ill, they can’t fight back.)

There would be bouts of being fat, but never for any length of time and each getting progressively worse, usually during times of stress or accompanied with stretches of time when I battled my unusual disorder Chronic Idiopathic Urticaria. It’s treated with Benadryl or other antihistamines and steroids like Prednisone. Later, at forty-seven years old, I would be diagnosed with  Exogenous Cushings Syndrome by an endocrinologist. It doesn’t explain the bouts of symptoms without the medications or the severe period during my pregnancy with Sn, my first-born. {When pregnant with him at 21, huge, angry, purple striations, like deep stretch marks no one can describe appeared on me. I had pre-eclampsia resulting in the last week being in hospital with blood pressure out of control, incredible edema (I could barely open my eyes) difficulty breathing and Sn being delivered by emergency c-section. The striations color and depth of scarring even appalling the OB-Gyn at the clinic, causing him to remark “Holy cow, did you eat to live or live to eat!?” Too depressed to even register shock, I tiredly told him he’d missed his calling as a comedian. If he was so damned smart, how did he miss Cushings?}

For twelve years my weight fluctuated between overweight by ten pounds and morbid obesity. At forty-two, I dropped all medications for my Bipolar and simply went to Lamictal, a mood stabilizer. The effect it had on my life was immeasurable and amazing. Being five foot two inches tall and having a body chemically changing it’s metabolism, I made fat easily and it shows on me in a heartbeat. I have a moon face, puffy eyes, a buffalo hump, muscular, average legs and carry my weight in my mid-section. Add into it, Benadryl and Prednisone; each caused either appetite increased or unexplained weight gain. Lamictal did not add to this metabolism mixture and it gave a smooth modulation to my moods with no discernible side effects.

 

As a mental health patient with physical illnesses, especially rare, confusing and difficult to diagnose ones at that, I have seen the side of medicine that people don’t like to talk about, the prejudice and stigma within the medical community. Because the flu, broken legs, chest pains and punctured bowels can be seen and fixed with a set pattern, physicians become annoyed and frustrated with the case that they have to work to figure out, especially if it’s answer is elusive. It’s far too easy to blame the patient and move on. Many times before I even sit on the exam table, as their eyes go down the medical history, they stop at my list of diagnoses and see “Bipolar, PTSD, Dissociation” and stop in their track. Everything I say from there on becomes suspect and attributed to it. If I am happy, I am manic. If I am quiet, depressed, and if I disagree, combative. I was once put in psyche scrubs in the emergency room when I went covered in hives and swelling in my throat. The time it has taken to deal with my physical illness would probably have been cut in half if not more, had I not had a mental health diagnosis label. The same is true for most people with moderate to severe mental illnesses. I have even watched it with my own child.

In 2007 an ultrasound found that both my kidneys were littered with small tumors called angiomyolipomas from Tuberous Sclerosis Complex, a rare genetic disorder that causes tumors to form in various other organs as well as a plethora of other symptoms. ( Are you sensing a pattern here? I seem to only get rare disorders. ) A misread MRI that same year showed SENs but the report read as clear. My first mental health hospitalization took place this year. Overwhelmed, hopeless, tired and in yet another hideously, awful relationship, failing my children and myself, I was suicidal. Struggling back was slow this time.

Of my three children, Sn, S and E, only E would be diagnosed with Pediatric Bipolar and she was a severe bullying case with suicidal times. I had to remove her from public school for her own safety, bring her home for in-home therapy with a behavioral assistant and emergency behavioral team. Admitting to a child neurologist and psychiatrist that she saw and heard things was both heart breaking and the beginning of her road to honesty and healing. She needed my every focus. My two other children, Sn and S were young adults and such strong people. I knew they would miss me terribly and grieve also. E was still a child and needed me daily for her care. I couldn’t leave them without a fight.

I was forty-four and I had to get the excess weight off my five foot two-inch frame when hospitalized with congestive Heart Failure . The doctors were unable to find a reason for the C.H.F. and my good friend Scott had died the previous December from a sudden myocardial infarction (heart attack). I was still grieving and shaken up. Smoking was one addictive behavior that couldn’t be beat for me. After thirty years as a smoker, I had tried so many times to quit and would always go back to it. There were years without cigarettes, and I would pick one up. He had asked me many times to quit smoking during the last six months he was alive. His cardiac issues had just been diagnosed and he was an ex-smoker. Why couldn’t I just put these down?

So, I began looking into adjustable gastric banding (Lap Band or Realize Band). Having T.S.C. with angiomiolypomas and a history of C.H.F. required me to do a bit more testing than the average bear.

Just over a week before surgery a friend, Jeff, was hospitalized with massive kidney failure and a mass in his bladder. Five days before my surgery, the seventeen-year-old older sister of Es primary bully assaulted me on our front steps. I had my ear stitched at my scalp, a CT Scan and had to be cleared by a neurologist to allow me to go through surgery because my head was one huge contusion. After surgery September 22, 2010, I spent the next eleven months taking care of Jeff, homeschooling E, and many other challenges. Having no restriction in my band most of that time discouraged and frustrated me. Though I gained no weight, I lost and regained fifteen pounds. E and I moved May 2011 and Jeff passed away on August 15, 2011.

Depression again engulfed me, beginning a day program allowed me safety of many sets of eyes on me, a place to talk, friends who understand what it’s like to be floundering with living as a person with mental illness in a world that wants to forget you.

September of 2013 an MRI to help diagnose a tic disorder that had begun in January, revealed at least eight brain tumors (non-cancerous SENs). At least six can be seen in the ventricles and two or more lesions in the grey matter. These are also from the T.S.C. This gives an explanation to many symptoms that have occurred and slowly gotten worse over the past few years such as memory issues, anomic aphasia and so on. Removing me from all atypical antipsychotics and some of the other medications relieved some of the ticcing.

My band, as many do, didn’t work out for me. A Vertical Sleeve Gastrectomy was performed at the same time as it’s removal on September 29, 2014. The weight loss for the first few weeks was quick but stopped just as quickly. The rest has been slow but it’s coming none-the-less. The fact that it’s coming off with little effort shows many things. 1) I don’t eat closets. B) the metabolism changes shown in VSG are clear so maybe my screaming about metabolism issues might have been right and iv) metabolic syndrome can’t be overcome by kicking a person in the sself-esteem it needs some help.

Es recovery has been simultaneous. It’s had its own ups and downs, the road always had dips and turns. My recovery as a parent has gone with it. The patient isn’t the only one who needs to heal, change and grow. Imagine it when the parent and the child are both AND both have insight … it’s a mind blower.

This story hasn’t ended yet. It will and is continuing on.

Why do I write?

I write because I am a mental health patient, a mental health patients parent, I love people with mental illness, I am a physical health patient, I am a fat person, I am a woman, I am a Mamma, I am a parent, I am a Memere, I am some times funny, I am a weight loss surgery patient … I wish I could say I was an author. I’m not that well written.

I simply write.

I write because I have something to say that maybe someone else who doesn’t have as big a mouth as I do wants to say, also …

Thanks for reading my long-winded story and I hope you stick around to read and share some of your story. Connecting to you teaches me. I need that gift.

 

 

Having been lucky enough to find a fantastic internist who looks at my case as a scientist, who isn’t afraid of it, much of how I view myself, my diseases and my life has been changed. As complex as my health is, it’s simplified so much with answers.

  1. All the years of therapy weren’t for naught. I did the work and do the steps needed. I was pro-active, I followed direction and it WAS effective. The issues that follow masked that fact.
  2. Bipolar NOS that I have managed, followed direction, asked for help when needed, taken my meds, reported any side effect and basically been an appropriate self managing patient.
  3. ) P.T.S.D. with a history of dissociation is a standing diagnosis that continues to be worked through in one on one therapy. There is discussion of releasing me with the option to go back as needed whenever I feel it’s necessary. The answers that have been found clarified so much for both myself and my mental health care providers that my mental health has improved immeasurably.
  4. )I have Tuberous Sclerosis Complex which has caused various neurological and other manifestations throughout my life that went undiagnosed and under the radar. instead, I appeared high strung, overly emotional, “ditzy” to name a few other labels. Someone talked me out of nursing school once with the rational that I was , you know, not cut out for it because i was the artsy type, kind of ditzy, head in the clouds, not very mathematical. I know today, I would have killed it. My neurological difficulties would have required a calculator, not unlike many of the other professionals I see walking around today. I have trouble with too much stimuli hitting me at once, such as an angry person shouting at me, or loud music, multiple people talking to me and expecting me to think and answer a question all at once. I’m learning how to focus through these issues now that I know what they are for me.Slowing myself down internally allows me not to lose it emotionally and know I can handle whatever is happening. Epilepsy is the leading cause of, probably, most of my time loss or confusion, etc. I now know when I am feeling weird, people can tell when I’m acting off and know what it is now. I’m not just being weird or a freak. My pain is no longer mysterious, my migraines have a reason, my losing words, difficulty with certain types of processing but sharp as a tack abilities to go around and find new ways of doing those problem-solving issues make sense now. I am NOT “always sick” or a hypochondriac, attention seeking, Borderline Personality, etc. I have “angiomyolipomas, too numerous to count, bilaterally” in the kidneys with cysts, a lipoma in my spleen, nodule in both lungs, a nodule on my thyroid, polyps in my intestines, cysts on my ovaries and cervix, a 10 cm tuber (with others) in my grey matter) small multiple SENs in the ventricle, etc.
  5. Sleep apnea is in question. I’m going to be stepping down from a CPAP to going back to a mouth appliance which is very cool. I loved my mouth guard and it’s so much sexier than a CPAP, let’s face it.
  6. Narcolepsy is still on the table. The epilepsy may actually be the issue. The problem is, unless it shows on an EEG during a study or during a sleep study and so on … so as it stands it questionable narcolepsy without cataplexy. (Though I have had cataplexy twice, at least)
  7. Chronic Idiopathic Urticaria – while I have multiple food and other allergies, which thank God, have been ferreted out there still stands unknown batches of hives. They get treated with steroids, Benadryl, and occasionally epinephrine.
  8. Exogenic Cushings – will be triggered when treated for either the sudden swelling or hives, sometimes for wheezing or certain infections if at anytime any steroid is introduced into my system. The curly hair I have now is pretty cool though.
  9. Eighty-five percent of the weight has been lost
  10. I may never be completely off blood pressure medication due to my kidneys BUT I am off one and only taking a low dosage of another, now.

 

But wait! there’s more!

But you have to read the blogs for that —

My points are, don’t discount people who are ill. We like to place ourselves above others we find tedious, beat them down with sunshine, shove unicorn farts and puppy dog pee up their noses as answers to very complicated, depressing and confusing situations because WE are frustrated with THEIR illnesses. Until you see all the chess pieces in place and know what game they have to play, do not tell them what moves to make or how easy it is to beat their opponent. And guess what? You will never know until you live it.

 

Chrissy

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