afraid of the unseen

About a week or two ago an old fear came back...

As a child I had an intense irrational fear of snakes coming out of the toilet and shower drain. I wasn't afraid of snakes - I've always liked them. But I was afraid that while sitting on the toilet snakes would emerge to attack me. Or while I washing my hair and had my eyes closed, snakes would come up from the drain to attack me - sometimes I was afraid spiders or snakes would come out of the showerhead, too.

I was unable to alleviate these fears for many many years, no matter how rational I was able to be about it. I knew I was safe. I knew no snakes or spiders could fit through those tiny holes. I knew that it was highly unlikely snakes could make it all the way through the plumbing and up the drains into my toilet or shower. But I was still terrified.

What made matters worse was my long hair... which if seen by me while in a showering situation, sent me into a panic that spiders and snakes were upon me.

I had another shower-related fear, too. But this one developed when I was a little older (maybe late teens, but definitely by college). The terror that someone would break into my home and attack me while I was in the shower - unable to see or hear them. Now, you're thinking "oh, she watched Psycho"... yes, I had seen that film. But it didn't really frighten me. And I wasn't afraid of Norman or his crazy dead mom, or being knifed. Mostly I was afraid of sexual assault.

I dealt with all of these fears by washing my hair very quickly, with my eyes wide open. It was okay to close my eyes for a snap second, but only just. Because even one second was enough to send my fear spiraling out of control - my heart palpitating, my mind racing.

I never could really do much about the snake/spider fear. I just had to keep telling myself not to worry, it's nearly impossible. But when I was old enough to have my own apartment, I dealt with my "stranger breaking in and attacking me while I showered" fear by buying a clear shower curtain.

A clear shower curtain allowed me to always see what was happening in the bathroom, and somehow it eased my fears tremendously. In fact, I don't remember when that fear finally went away, but certainly it's been gone for a decade or so... until last week.

Last week, without any warning, I found myself in the shower... gripped by fear that someone was in the apartment and on their way to the bathroom to harm me.

Where on earth had this come from? Why was this fear back? It has continued daily since it's reappearance, and once last week I was startled when a piece of my long hair brushed against my bare shoulder and I saw the thick darkness of it against my pale skin.

We've gone a few years without having a clear shower curtain mostly because we've had transparent shower doors or roommates who bought the shower curtains before we arrived. And we've had opaque shower curtains for several months without me experiencing this kind of reaction. So, why now? What changed?

When I think about what is happening in my life at this very moment, what comes up for is that I feel so incredibly vulnerable. There are a lot of unknowns right now and I do not feel safe.

The biggest thing that I can grab hold of to make sense of this fear is that my health is wacky - I don't know which way is up when it comes to my body anymore, it's a different ballgame and no one gave me a rule book. I'm increasingly afraid of dying young. I have no issues dying when I'm 75, but when I think of being very ill and dying in a couple years it really scares me - I cry every time I let the thought cross my mind. And even though I've never felt ready to have kids, I'm deeply saddened that I don't have children and probably never will. And I am afraid of my Medicaid not being renewed - that would mean no medical care, which I need because who knows when this disease is going to crank up the volume.

I never expected my 30s to be a terrifying time in my life. I thought I was done with all the fear.

For the moment, I pull the opaque outter shower curtain back so that I can see through the transparent liner... it helps a little, but it doesn't fully soothe my fears. I am meeting with a therapist tomorrow, so now I suppose we'll have something to discuss, haha. I hope we can pull back the opaque layer of my mind and investigate what is on the other side.

The Silent Treatment pt1

When my dad gets mad at people he shuts them out. He ignores them when in the same room/home, and doesn't contact them if they live apart. Then one day out of the blue, he begins talking to /contacting them again as if nothing out of the ordinary transpired. The unspoken agreement is that everyone just allows this to happen and doesn't address the problem that had happened, or the communication issue. It's rather odd.

I've only lived with my dad a handful of times... as a baby for maybe a year (while my mom and he were together), when I was 10 (for about 4 months), again when I was 14 (for about 5 or 6 months), and then when I was 17 (for about 2 months).

When I was 8 - 11 I would stay with my dad for part of the summer. And from age 8 to 13 I was supposed to stay with him every other weekend. When this didn't happen it was because he didn't show up. And in fact, he'd disappear from my life for months at a time, even though he wasn't mad at me. He simply had a drug problem that had spiraled out of control.

While growing up we'd always had a very positive relationship. He had always been patient, loving, caring, playful, and kind. In fact, he never yelled at me while I was a child, or spanked me. He just didn't believe in it.

The only time he ever yelled at me was in front of his new girlfriend (at the time) when I was 14, and it was a total over-reaction to me not wanting to do the dishes. What 14 year old wants to wash dishes? The way I remember it, he only asked me twice before yelling. If I had been his girlfriend, that would have been my first clue to exit the relationship.

When I was 17 he shut me out over child support payments - something which had little to do with my choices but everything to do with his and my mom's choices. He didn't come to my high school graduation or my graduation party (which was held at his mom's house). I received no acknowledgment for my accomplishment other than a subpoena... he was suing me to end child support payments because I was living in a transitional housing program for homeless teens... the result was a court order to continue paying until I graduated from college (which would be a couple years more in payments than if he'd have not done anything). All of this was extremely painful for me and still impacts my relationship with money today.

A couple years later, once I was attending a WSU, he tried to re-enter my life... his first phone call to me was asking if I could get him Apple Cup tickets. I told him I couldn't, and then bought tickets for me and my mom to go instead. I felt like he was trying to use me for his own benefit. I certainly didn't feel like he deserved anything from me.

Within another year he started pressuring me to graduate early... his girlfriend was pregnant and they needed that child support money that was still coming to me monthly. A whopping $220 a month. I told him "no" because I was not willing to compromise my education.

I sent him holiday cards and a birthday card after that... hoping to still have a somewhat amicable relationship. I didn't hear back. So, I assumed he was ignoring me, and I decided that I was done. I would absolutely no longer tolerate someone coming into and dropping out of my life whenever they felt like it. It had traumatized me emotionally. It was not okay and I felt strong enough to say so.

So, I wrote him a letter from the depths of my pained heart telling him about every negative experience I could remember having in his care (the humiliation, the lies, the abandonment), and everything I had wanted from him (love, communication), and what I saw that stood between us (his greed), and that I would no longer be speaking to him because it was not healthy for me to have him in my life (or popping in and out).

We didn't speak for a decade.

I think it was one of the healthiest choices I could have made for myself. I needed to create stability in my life. I needed emotional safety. I needed to heal.

All of this did come with some added unpleasantness. My dad's family (his sisters, and mom) were very invested in me and him having a relationship. They would urge me to talk to him, call him, try to be in his life. They could not have understood how much pain he had caused in my life. I told them that they only thought I should talk to him because he was my dad. If he had been a spouse and had treated me the way he treated me, they would have applaud me for getting out of an abusive relationship and would have told me never to look back. But because we share some DNA I should forgive him and allow him to make up the rules that determine how our relationship work. All but my Grandma eventually stopped talking to me... By shutting out an abuser, I lost most of my family.

Today I am not close with my dad by any means. He refuses to discuss anything that happened in the past, any choices either of us made, our not talking for years. He won't even acknowledge it. But he must be hurting, too. We send emails a couple times a year. Mainly I think he just wanted to create a connection between me and his 12 year old daughter, my youngest sister. I suppose that means he thinks I turned out okay. She and I communicate through email weekly, sometimes more or less. And I hope it has been a positive experience for her. It has been for me.

As I think about my dad's way of coping with his emotions - to shut out people - I can't help but think about my own way of dealing with my emotions. Mostly I tell people how I feel when or soon after I've recognized what I'm feeling. Sometimes it takes me a lot of time to sort it all out. I don't often get upset enough to shut people out, but sometimes I do... but the only person I really do this with is my partner. And it tends to be because what I feel is wholly overwhelming... if I truly let it through I will rage or cry or say something very very damaging. And in all honesty this is a terrifying thought. I certainly do not want to go wild with rage at my partner, or sob uncontrollably. And under no circumstances do I want to say anything hurtful or damaging.

But ignoring someone causes them pain, too. I know this firsthand. And as I imagine how my partner must feel when I am so angry that I ignore him for a whole day, I feel guilty. I don't want to cause that kind of pain. The upside is that, unlike my dad, once I've done some thinking on whats going on for me, I am able to talk about whatever happened. And I am able to even talk about how I used silence and why.

But the truth is that my dad's tools won't work for this job. I need new tools to deal with my emotions. I need tools that heal and join. I need tools that nurture connection and provide understanding.

so far so good

had my intake appointment at the Karen Horney Clinic... the place is comfortable and attractive, accessible by my nearest train, and i get the feeling that the therapists are competent. i'm quite hopeful and even a bit excited to start therapy there. i kinda wish i had found this place first.

in other news, i've actually been feeling really good lately. perhaps ive mentioned this. i totally attribute it to taking vitamin D. MisterB (my sweetie, who is a 2nd yr MSW student) says that in one more week i will no longer meet the criteria for Dysthymia! that is pretty freakin' exciting! i think it's been near 5 years since i last did not meet the criteria, so this is a bit of a milestone.

i actually feel very spiritually connected, too... something i haven't felt strongly for a couple years. Mister B and i were discussing Maslow's hierarchy of needs and how this relates to spiritual connection. if our other basic needs aren't met (food/shelter/love/safety/health) we can have difficulty experiencing spiritual connection. once our basic needs are met, our minds are more open to experiencing that connection. MisterB explains this much better than i just did... but you get the idea.

i've found that when i'm feeling very unwell (not just having a cold, but long-term unwellness due to my connective tissue disease) i can't buy into the spiritual beliefs/teachings that i am easily able to connect with when i feel well. for example, when i feel well i absolutely know that the universe is conspiring to shower me with gifts and joy and goodness. when i feel unwell i feel apathetic about this idea or like it's B.S. when i feel unwell, im unable to meditate or really get into spiritual books that, when im well, i typically enjoy.

right now, im enjoying being able to connect to my spiritual self. i feel positive, joyful, and hopeful... even though i still feel somewhat physically unwell.

the only thing that has changed in the last few months is the vitamin D. although i suppose i have eaten an extraordinary amount of cheesecake lately, lol. still, im betting it's the vitamin D and not the cheesecake that is making all the difference :)

frustrated incorporated

i am so frustrated by my experience at LICH that I don't even want to talk about it any more, although you know i'm about to talk about it. i have never so wholly been treated like a non-person in every office in an entire organization. partly, because i haven't had to receive "services" or be "in the system" in more than 10 years. i guess i got so used to being a person over the last decade that i find it appalling when i'm not treated like one. still, there are others who have never been treated like a person in their entire life because they have always been "in the system." that makes me sad and angry.

the system sucks.
it is supposed to help, but it oppresses.

what i am proud of is that i decided to take action to make a change and not tolerate the shitty health care.

i will no longer be receiving any of my health care through LICH. i had to spend at least 3 hours in a waiting room every time i went to an appointment, and had to go to a different department to see a different doctor for every health service need. my gynecology specimens were lost and had to be retaken (i refused to come in for a THIRD appointment to get results and insisted they call me with results). i was repeatedly told to take Tylenol by different doctors (Tylenol only MASKS pain and does nothing for the inflammation which causes the pain i have), and when i asked for a referral for therapy for coping with all that was going on, my doctor seemed reluctant and surprised. i didn't even feel like i could ask for other referrals.

my luck with the LICH psychiatry department was just as poor... (i don't need a psychiatrist - i don't need medication, i need a social work therapist - i need to be heard and asked powerful questions!) The LICH psych nurse totally pushed medication (i know it's her job, but that wasn't why i was there!) and the therapist did not treat me as a whole person, seemed to work really hard at keeping my stuff at the surface level (rather than helping me go deeper), and then kept asking what my goals in therapy were. uh, we've covered that... im in crisis! help me cope with a chronic health condition. help me cope with being treated like a non-person in a system that is supposed to be helping me. help me heal my emotional wounds so that i can have healthy relationships with more than one person at a time!

really, she only needed to competently do one thing - listen. she failed. i think my poverty made this therapist uncomfy. i think she couldn't hold my fear and anxiety. i think it doesn't matter because i won't be seeing her again.

i stand firmly by my belief that therapy should not cause a person to leave more distressed than they came in. same goes for routine medical care.

Solutions:

i called a therapy clinic in Manhattan that my friends in social work school keep raving about as phenomenal... turns out the place takes Medicaid... and on the phone they treated me like a real person. so far, so good. next week, i'll call back to make an intake appointment.

i also called Medicaid and switched my primary doctor to someone at the clinic i went to last year (pre-Medicaid). i had some pretty thorough care at that clinic and felt like i was taken seriously and treated like a whole person (except, ironically, by the social work intern who helped me get on Medicaid). in fact, the doctors had actually involved me in my health care, asking me what i thought was going on and what i wanted in my care. they didn't try to push medication of any kind (although it was offered when required/needed), and even suggested "alternatives" - licorice tea for my sore throat at the time, art expression (for depression/coping with stress), physical therapy (for my hip). i truly appreciated the experience i had there.

i should have just gone back to this clinic in the first place. but the doctor i saw was a resident and wasn't there any longer... and i was worried if i got sick i wouldn't be able to make it there easily, and i needed to know i could get there easily. i also assumed i'd get just as good of care at any clinic that took Medicaid. i was wrong.

all care is not equal.

diagnosis ridiculous

Last week I was diagnosed with a systemic autoimmune disorder called Undifferentiated Connective Tissue Disease. (UCTD)

The immune system's job is to help keep the body healthy by fighting invading bacteria and viruses. With an autoimmune disease, the immune system becomes confused and overactive. This means my immune system is attacking my own cells thinking they are bacterial/viral invaders. (This is different than HIV/AIDS where the immune system is under-active and unable to fight off invading bacteria and viruses.) Autoimmune diseases are thought to be caused by environmental influences and/or genetic predisposition - they aren't contagious or transmittable.

Systemic means it affects my whole body.

Connective tissue is the "glue" that supports and connects various parts of the body; it includes skin, cartilage, muscles, and other tissue in the joints and surrounding the heart and lungs and within the kidney and other organs.

The undifferentiated part means the symptoms I currently experience match symptoms common among several different autoimmune diseases like Lupus, Rheumatoid Arthritis, and Sjogren's Syndrome. And even though I do test positive for Lupus and negative for the other autoimmune diseases, there aren't enough characteristics of a well-defined disease (like Lupus) to make the diagnosis.

Autoimmune diseases have no cure. There is a 50/50 chance my condition will develop enough to diagnose it as Lupus. Which means there is also a 50/50 chance it will remain as it is and the symptoms will never progress.

There are some medications available, but the medications tend to be toxic and the side effects are more awful than what I'm already experiencing. Currently, I'm taking Vitamin D supplements to see if that alleviates any of my symptoms before I agree to take any other medication.

With my cells being so busy kicking their own asses, it leaves the rest of me with very little energy. Some symptoms come and go. Others seem to be a permanent fixture. Essentially I’ve felt like I’ve had the flu for a couple years (achy muscles, joint pain, fatigue, lungs are tight, random fevers for no damn reason, nausea, dizziness). I do have other non-flu symptoms, too (like depression, Raynauds, migraine-like headaches with vomiting, confusion, memory difficulty, etc).

Looking back, I believe this has actually been in development since I was a kid or teen, and has only become more prevalent in the last 5 years. Five years ago I was extremely ill for three weeks with what looked like an extremely bad flu but no one around me got sick - not one person. I was planning to leave my job to become self-employed anyway, so they released me. To help make ends meet over the last 5 years I have tried all kinds of part-time work - mostly temp jobs. But every time I’ve started working I’ve gotten sick within a couple of days. Totally. Not. Normal. I just thought I was sensitive, or that it was my mind rebelling against office work by getting my body to play sick, lol. I had no idea there was something more serious going on. Certainly I feared this possibility, but I didn't believe it.

Over the last couple of years my activity has dwindled considerably as the disease activity has picked up. I'm just not able to be as active as I want to be - when I push myself too hard I get sick. And what is now considered "pushing myself" is pretty lame. I continue to create art for self-expression and income as much as I can. I don't really have the energy to do the marketing and sales in order to have art support me financially. And I really do not have the energy to continue with my coaching practice, and am no longer accepting new clients. This does leave me in a bit of a financial quandary.

I hate admitting this stuff - the exhaustion and lack of energy especially. I've always prided myself on being a strong trooper who pushes through even if I'm not feeling well. So having to slow down (and often do nothing) is hard for me. In fact, a lot of the symptoms really push my ego-buttons. I don't want anyone to feel sorry for me, or tell me how strong I must be, or think I'm full of shit, or be afraid to talk to me, or tell me to buck up, or be mad at me. I don't need advice, or encouragement, or discouragement, or admonishments, or to be told how to feel or think. I don't need anything at the moment besides being allowed to be wherever I'm at in the moment. Listening and nodding is enough.

There is some grieving I will be doing around all of this over the next few months as I work out what all of this means for me.

not freaking out

okay, so my lab results came back and my doc says they "hint at lupus." so, we meet again in three weeks to check in and then she's referring me to a rheumatologist who can look over my charts, recommend additional testing, and monitor my condition.

im not really phased by it this time around... (a year and a half ago a doc told me i had lupus [and later called me to say i didnt and more tests needed to be done])... apparently i actually got all of the freaking out done back then.

here's what i think helps me not be in freak out mode:
1. i actually feel pretty healthy (and have for several months).
2. the doc says the tests indicate my organs are healthy.
3. im certain im going to live a long and healthy life (regardless of any disease).
4. my doctor is taking me seriously, and isn't freaking out.
5. my partner (Mr B) isn't freaking out.
6. ive already researched all this and freaked out a year+ ago.

ive also got upcoming appointments with the psych department in order to get a therapist, in part to help me cope with this. im quite excited about the chance to receive therapy and a irritated at how long it's taking to get this part rolling.

a bit

feeling a bit better. although i use "a bit" loosely.

started doing ceramics again a few weeks ago and that gives me something to funnel my energy and emotions into. or perhaps it gives me a place to escape said emotions while actually finding some energy.

im a bit frustrated that the clay is so damp - it's difficult to work with and impossible to keep centered.

today i threw a planter, two herb jars (with one lid), and a mug. a bit of a hodge podge, but since im just getting going again i'm willing to be flexible about what i create.

oh, mercury is out of retrograde. maybe things will make more sense for a bit.