small steps, HUGE victories

As I mentioned in an earlier post, my midterm grades the other week were straight As ---- 4.0

HOT DAMN AND HALLELUJAH

For some people that is a huge accomplishment, and it is for me as well.  It wasn't always so.

What do I mean?

When I as in high school, straight As were a given.  I was in all honor's classes, among the cream of the crop in my class.  When I graduated I was something like 42 in a class of 228?  Many of my fellow students were surprised that my class rank wasn't higher.  Provided my grades satisfied me and I could get into the school I wanted, I wasn't overly concerned with my class rank.  And by the time my senior year rolled around, I wasn't overly interested in busting my hump for a higher ranking.

I was one of those students everyone just KNEW was going to go far.  I left for college full of life, promise, and hubris.  My first semester proved far more challenging emotionally than I'd ever thought possible.  Quite a few challenges and several traumas undermined my foundation.  That first semester is the LAST TIME I pulled a 4.0

By spring semester I was struggling, and had to withdraw from classes mid semester.  The subsequent years had many ups and downs.  Sometimes I got through the term, sometimes I didn't.  I left school mid-semester more than once to regroup.  I regularly pulled an A with multiple Bs and Cs.  Jugging it all was just too difficult for me emotionally.  Especially when coping with the roller coaster of my illness; many incompletes devolved into Fs.  I eventually withdrew fully from college in June of 2003.

When I started back to college last fall it was rough.  VERY overwhelming at times.  I was exhausted and ended back in therapy to help me cope.  I had a solid B average come December which pleased me.  I knew very well that it would take me awhile to get my bearings.  This semester I set myself the goal of getting straight As.

And so far, I've DONE IT!!!!  So I'm doing my happy dance, and enjoying the feeling.  Never in my wildest dreams at 18 would I have thought this would be such a huge accomplishment for me.  But it is.  It took me many many years to be ready to return to school.  Longer still to be able.  And thanks to meds, support, and a tremendous amount of effort on my part, I'm close to meeting that goal.

Many many MANY small steps, but a huge payout.  So I'm telling myself, this is a victory.  Don't take it for granted.  DON'T diminish this.  Who you are and who you were are very different.  That girl never had half my strength or wisdom.  She skated on her natural talents and other factor, I don't.

I have EARNED this.  And I deserve to feel good about it.

Love, Hate, and Modern Medicine

Today's blast from the past comes from June 2008.  Mere months before I relocated 180 miles away from my home town to start the next phase of my life.  Moral of today's story-- ALWAYS read the information given to you by the pharmacy.  Make sure you understand it, so you are able to make an informed decision about what's safe for you.  Don't be afraid to advocate for yourself.  You know your body, and doctors can make mistakes.



Gotta love the medical establishment.  Today is case in point as to why MDs either love or hate me.

Went to urgent care today because I need an antibiotic (will spare you details).  Been trying the holistic route and it hasn't been making much of a dent.  And my healer pretty much told me yesterday she wanted me to get a culture, so in I went.  I chose urgent care over my internist because
                  1-- I don't like him much, very brusque
                  2-- he's always hard to get into,
                  3-- he's always running late, and
                  4-- when Papa saw him this AM for a 10:00 appointment, he
                       was already running over an hour behind.

So I went to the clinic and got right in.  Lovely, fun RN took my history.  But the MD, I don't think he really looked at my chart, or at least not in depth.  I say this because as he was walking into the exam room the nurse verbally told him that I'm allergic to sulfa drugs-------------- something that he should have seen on the chart.  Sulfa is the drug of choice for what I have going on, and he still tried to prescribe it.  So he wasn't paying the best attention.

The doc prescribed Cippro, really bringing out the big guns.  I've never had it before, but do take Levaquin on occasion and it works well for me.  Picking up the script at the pharmacy I started reading the paper insert which said, among other things, the following:

                    --- please inform your doctor if you experience............. mood changes, weakness in limbs, dizziness...................  in extreme cases has been known to induce mania.............. do not take if you have a history of neurological problems [or] have taken and anti-seizure medication within the past year.................. may cause mild to extreme sun sensitivity.........

Yeah, SO not taking that.

so back to urgent care I went.  Now convinced he didn't look at my chart at ALL.  Just what exactly are Lexapro and Lamictal? ** [DUH]

Talked to the nurse and told her I wanted Levaquin, she was doubtful but said she'd talk to the MD.  To shorten the tale, I actually had the MD sit down with a PDR [Physicians Desk Reference] while there were no other patients there waiting to be seen.  He seemed amused by me wanting to look at the data as opposed to offended-- good sign.  Levaquin is the same family as Cippro, but the potential side effects are much lower.  And no drug interaction danger.  Plus, I've taken it several times before without difficulty.

So, maybe I need to give my internist a break.  He doesn't make accidental errors like that.  In fact, he doesn't give me ANYTHING without first consulting his PDR on PDA.  He knows he doesn't know jack about psychotropics.

6 of one, half a dozen the other.  Despite the inconvenience of going back, I was still done in at least half the time if I'd gotten in to see my regular doc today.  And, free medical care from the good sisters is nothing to complain about.  Sort of ;)  ***

**  medical lesson for the day.  Lexapro is an SSRI, a class of antidepressant.  Thus, looking for mood contraindications is important.  Lamictal is an anti-seizure, anti-manic medication.  Insert said not to take if you have a history of neurological problems.  Technically, MI is classified under neurology.  And Lamictal IS an anti-seizure. 

*** my home area has a Catholic run hospital.  The good sisters do not require a medical co-pay for people on public aid.

Things are Looking Up!

"Things are looking.  I've been looking the landscape over, and it's covered with four-leaf clovers . . . "

Good evening, dear readers.  I know my posts have been rather cranky this week, mostly because I've been rather cranky.  Even the blasts from the past have been downers.  I have follow-ups to posts from earlier this week to write which will clarify some things, and give you a better idea of what I was thinking/feeling.  Mental/emotional processing is a VERY big part of recovery.  However, the last two days have been rather lovely, so I thought I'd share a small bit.

I've been slowly but surely losing weight the last 18 months.  27 pounds total!  ***  I haven't changed THAT much activity.  However, I eat VERY well and don't keep crap in the house.  If I want something THAT badly, I have to decide whether I want to walk my butt the 3/4 mile up to the gas station to get it.  It's been very helpful and rewarding to my self esteem. I also eat a lot of fruit and yogurt, for health as well as convenience.  I never thought I'd be one of those people who buys the pre-packaged fruit cups, they ARE more expensive, but with my schedule I really need grab and go.  So that also means a lot of nuts and protein bars in addition to my fresh fruit and soy milk/cow milk mix.  Plus you can buy fruit cups in natural juices instead of the overwhelming syrup!

I've been getting more exercise more consistently.  It's not that I've INCREASED my exercise, but that the frequency has changed.  I haven't owned a vehicle since late January 2010.  I do drive, but the car I had died horribly and I haven't been able to replace it.  So days I have to leave the house (at least 4 of 7) I walk to and from the bus stop, the train, etc.  The general minimum is 1.5 miles.  The general maximum if not running errands is 4 miles.  With QUITE a few stairs getting on and off the train platform.  There are two buses I can catch to and from one of my client's homes, but I typically opt to walk.  It's often faster than waiting for my connection, the exercise is good for me, and the weather has been increasingly lovely. 

The walking being broken up throughout the day has made an INCREDIBLE difference.  And if you don't know, the Saint Louis area has a LOT of hills.  My butt has never been so flat!  Other than the weight loss, I have had two major, obvious benefits.  One-- I sleep far better overall (although there are always times when sleep is a challenge)  Two-- my legs and overall body is looser.  I carry my stress in my legs and hips, but I have a very high pain thresh-hold.  I often don't realize just how tight I am until my back starts to ache.  My problem areas stay loose and warm, also allowing me to get a deeper, longer stretch.  Add into account that I sometimes sit in HORRIBLE chairs at school most of the day-- the walking really helps.

If I go a few days without leaving the house and DON'T make myself go out and walk, I FEEL it.  I'm tight and my sleep is often worse.

But with all that build-up, here is my happy happy experience of today and yesterday. . . .   I have been swapping out winter clothes for spring and summer.  Many of my clothes are too big right now, and I don't really have the extra time or extra cash to hit Goodwill and the other resale shops.  A good friend of mine who is like my sister, has usually been one size smaller than I.  She, TOO, is losing weight so I went 'shopping' in her closet earlier this week.  That was helpful.  But as I started really looking at my wardrobe I started making choices of what to save and store and what to put away.

THEN I started getting out warm weather clothes.  I started trying them on.  I have so many FABULOUS tops that fit again.  Or almost fit (either being tad too big or a tad too tight)  So far EVERY pair of slacks I've tried on (5 total) have been WAY too big, plus two pairs of jeans.  Two pairs of capris now fit well.  Unfortunately they're very casual, so I'm going to need something nicer for the good tops.

So I still need to go shopping, but what a WONDERFUL feeling!!!  You can really see the loss when things no longer fit.  And by giving them away I DON'T have a fall back.  That will make me work to keep where I am, AND keep going.  Found several nice things that are still about 2 sizes too small, but I think I can get into them by the end of summer.

So there's part of my happy Friday/Saturday.  Let's do the Snoopy Dance!!!


***For anyone unaware, psychiatric medication VERY often involves weight gain.  Some meds cause compulsive eating (unbeknownst to the patient unless it is continually pointed out).  MANY meds slow down your metabolism and/or screw with your sex hormones.  Often people who are depressed crave carbs, because it can help with the imbalanced neutro-transmitters.

So body image due to weight gain often becomes a stressor for people with MI.  And we already HAVE self-esteem issues thanks to our illness.  Kind of a lose-lose.  Take your meds and get fat, but feel better.  Don't take your meds to stop weight gain and maybe reverse the gain, and give your disease greater control over your life.  Not a pleasant choice.

Spring Fever!!

Evening everyone!

I can't speak for you, but I caught spring fever last week.  What does that mean?  Well for ME it means that I had a LOT of extra energy.  It happens every year.  The planet rejuvenates, the birds sing, and my ass is awake anywhere between 4 and 5:30 am.

And more often than not NOTHING gets me back to sleep.

I've come to expect this annual semi-hypomanic state (awful phrasing I know, but accurate for my symptoms) and learned to adjust accordingly.  Friends and family notice it, and I often enjoy it.  By 'it' I don't mean the hypo-mania* as much as the reawakening of the earth.  It's truly something I adore.  The sights and smells.  The grass renewing so I can enjoy walking barefoot on it.  The thunderstorms . . .

Spring is my time.  I enjoy fall as well, but spring wins hands-down.  It signals an end to the dearth of winter, and my SAD markedly improves.  The really challenging/frustrating thing is that I often can't get to sleep at night.  I'll be up since 5am, put in a long and busy day, often very physically active, and be lying there at midnight unable to sleep.  Why?  Well, it's very similar to when my Aunt Juba goes to Vegas.  She canNOT sleep there.  As she says: "They're having fun without me"

Yup.  The planet is getting happy, and I get happy with it.

Not sleeping can be anywhere from annoying and tiring, to exhausting and dangerous.  But as I said, I've learned to deal with it.  I often get a lot accomplished**.  For example, earlier last week I got a LOT of drafts either finished or started for YOU, dear readers.  Many of them are blasts from the past, but still relevant.

This past Friday and Saturday (March 16 & 17) is a very good example, in terms of rest and extra energy both.  I woke up at 4am.  I lay there unable to get back to sleep.  I listened to the birds, heard my one room mate get up at 5:30 and shower, and then his fiance at 6:30 and shower.  The water running must have helped me drift back down because I didn't hear them leave and lock up.  I rewoke at 7:45 cranky and tired.  I know I didn't get all the way down into REM from how my brain was functioning.  But I said fuck it and got up.

A girlfriend, Felicia, called me for our semi-regular morning chats.  We usually get one in on Thursday or Friday as she drives to work.  Thursdays I don't have to be anywhere until 1pm, and my Fridays are always in flux. So we usually get one visit in per week.  We had about an hour of talking, and then it was OFF to the races.

AAAAAAALLLLLLLL day I baked, and cleaned, and did laundry.  I found my bedroom floor.  Even disassembled and washed, then reassembled (the difficult part) all my dog's bedding.

Four o'clock rolled around and since I didn't want to stop without finishing all my tasks, I was running late.  My monthly, para-professional community event started at 7.  Doors open at 6 and I usually arrive before that to help set up.  But I didn't make it there until 6:45.  Thankfully my friends didn't mind.  I had a wonderful time, but I was exhausted.  Got home around midnight, and to sleep approximately 1:30 Saturday morning.  Well, I can't know that for sure, but that's the last time I remember seeing on the clock.  I slept poorly and had bad dreams as I had all week, only to be up again at 7:30 and out the door at 9:30.  This time attending a para-professional expo during the day and religious gathering in the evening.

I currently down own a car, so I rely on mass transit.  It could be better here, but I'm thankful to have what we do.  1-3 routes come within a mile of my house depending on the day/time.  I can typically get everywhere I need to be within 90 minutes, and I've learned to use that as my mental down time.  Or chat time with friends via text.  I can't read/study on the bus; I get nauseous and a horrible headache.  Saturday morning/afternoon taking the bus to and from my destination only would have saved me 5 minutes  Since I walk quickly I opted to walk.  Then I wouldn't have to deal with timing my departure to coincide with schedules.  It was just under 2 miles and a beautiful day (though I did get soaked on the way home).  I was DRAGGING by the time I left at 2pm, having been on my feet consistently since 9:30.

My friend Bobby (married to Felicia) was there Saturday and had also attended the event Friday night.  When I got home (and texted him to let him know I was safe) he expressed concern about me going to my religious gathering.  Especially given it meant yet another long commute.   Especially since I only had 90 minutes of down time before leaving again.  Plus, said down time had to include a playing with J and getting ready.  I took his point; it was valid and he was worried about me.  But there are only 8 sabbats/year and I knew that if I didn't go I'd regret it.  I needed the worship, community and fun.  I needed the emotional and spiritual energy tune-up.

And besides, I assured him, I'd already arranged for a ride home.

Saturday formally ended when I got home at 11:30 pm and collapsed into bed.  Thankfully I finally slept well and was able to sleep until I woke naturally.  But my MIND wasn't tired.  Granted I was dragging mentally Friday night, and late Saturday night, but I was still lucid.  Sunday my legs were really aching.  Annoying but a good sign.  It means my body is adjusting, and the mania*** was starting to wane.

Today is Wednesday and so far it has been a hectic week.  I am sleeping better, and my rest has greatly improved.  Monday night I slept SO hard/deeply, that I stumbled around the first several minutes when I got up Tuesday morning.  If you read my Tuesday post, you know I had a rough evening (on Monday).  All part of the process/disease.  The intense crying Monday night probably helped tire me out so that I slept better.  I had two 'mountaintop experiences', as my father would say, over the weekend.  Using a LOT of mental and physical energy.  Hypomania was DEFINITELY involved.  That takes a toll on body and spirit.  So part of Monday night was the pendulum swinging back.  But I'm still here, still keepin' on.  As far as I'm concerned, other options aren't relevant.

And today I learned that as of midterm I have straight A's.  WOOT!  Time for the Snoopy dance!




*Mania, in it's varying levels of intensity, often feels GOOD.  It's one reason why people with mental illness don't take their meds.  I'd be lying if I said I didn't enjoy the sensation and effects on occasion.  But once the pendulum starts one way, it CAN get out of control, and very quickly, for anyone.


**another component of mania that is often enjoyed-- the productivity.  Although, it's not always GOOD work, and things started during these phases often go unfinished for many people.


***it's very important as one starts down the recovery road to know how your body responds and your thoughts change.  self-awareness keeps you safe and healthy.

and a final note on mania-- mania has varying degrees of intensity and severity.  While most commonly thought of in people with severe bipolar disorder (formally manic-depression), it is found in people with other psychiatric challenges.  Many people without bi-polar disorder may have episodes of mania, even those NOT on the mood disorder spectrum.

Sometimes Healing Hurts

Yesterday started out as a very good day.  I made it to school ad got to enjoy lovely weather.  Saw all my friends whom I'd missed over spring break.  My one teacher was absent due to illness, so we had a substitute.  We did some very specific, interesting review that was helpful to me.  Lots of little, bitty differences that can be confusing.  The substitute-- my Monday afternoon teacher-- asked if we wanted to wait until our regular instructor returns and we all said yes.  It's a receptive ASL [American Sign Language] exam, and we are accustomed to how our regular gal signs.

Had a nice lunch break, and headed to afternoon class.  Did some VERY helpful, nitty gritty work on numbers and money.  Then had 2 quizzes.  Neither was particularly painful.  Always nice.  THEN I got my midterm exams and all my quizzes back.  I'm sitting at a 92% in that class.  And it's my MOST difficult class.  I was thrilled!!

Home to change and pick up J, then to a friend's house for dinner, visit and massage.  Boy did I need the massage!  But, with it came some energy healing and releasing of things below the surface.  Got home around 9:30 and when I logged in to FB, I saw something very nice that set me off.  No rhyme or reason for it, I just saw something that touched me deeply.  What you may ask?  An acquaintance of mine took a photo of Bobby (Felicia's husband) and me at the Saturday professional networking gig I attended.  It turned out REALLY well.  I haven't looked so nice in a long time.

I cried and cried and cried and cried.  For a good hour while I was texting with Felicia.  She mostly just 'listened', and commented that I need to get some self-esteem.  I told her that I have EXCELLENT self-esteem.  Barring this one area of my life-- men, love, and relationships.  With some body image thrown in.

Sound like a lot? It's not, really.  Love and relationships is a far larger area than men and dating.  It's all one umbrella issue; intricately linked. **

MI robs people of many things.  Their hopes and dreams, self-esteem, often their body image, sometimes friends and family.  There is a fear of relapse.  Clawing your way back from that pain and low self-regard takes a long time.  It often requires weekly, if not daily, effort.  It means paying attention your thoughts, behaviours, and word choices.

I know I'm smart, talented, educated, and an excellent friend.  I'm fun to be around.  I'm a gifted healer and public speaker.  I take good care of people I care about.  I use the varying love languages  to show my appreciation for those who mean a lot to me.  I'm polite and kind to strangers-- asking if they need assistance, opening doors, making general conversation.  I always remember the assistants and custodians at school, taking time to learn their names and making sure they get a little thing of appreciation over the holidays since they're so often forgotten.

In short, I'm a DAMN fine individual.  I have people who really love me.  But sometimes in my heart, it's not enough.  I'm able to like and respect myself, but not love myself.

Yesterday, as things released, a lot of deep seated grief and fear came to the fore.  Often I ignore it, or bury it.  More and more often recently I take it out and examine it.  True, deep healing takes time.  I tell myself that what I'm thinking is bullshit and MEAN it.  But it's still there.  Last night it hurt.  A LOT.  But I know it will be better in the long run.

I went to bed with my eyes swollen, and they look horribly puffy today.  If friends ask I'll blame it on allergies, easy excuse for springtime.  And one benefit of crying forever is that your sinuses drain.  ;)  I slept HARD and deep.  Woke up at 3am to use the restroom, and I literally stumbled to and from the bathroom I was in such a deep sleep.  Took a LOT to drag myself out of bed today but I managed it.

So off to school.  Another day.  Beautiful weather predicted, and I'm sure to get a few needed hugs.  Keeping on.  It's what I do.  Often times it sucks and can be REALLY hard.  But it's how to stay in recovery.  I fought WAY too long and hard to get here; I'm NOT giving it up.  Will keep you posted!


**I will post the text conversation later so that you may see what I mean, dear readers.  For those of you without MI, I think you'll find it enlightening.  It will also create an excellent springboard for conversation, and set the stage for future posts.

My Kinda Person!!!!

Today's post is a blast from the past-- January of 2009 to be specific.  I found this old entry a few weeks ago, and pulling out this happy memory helps me smile.  It tells the tale of a positive experience I had out in public with J.

Here's a little vignette that occurred last week. Maybe you'll appreciate it as much as I enjoyed the experience.

I'm in one of those modes--being winter and all--that I really need to LEAVE the house to get much of anything accomplished.  Case in point--- I have a LOT of writing and intentional energy work to do, but if I don't GO somewhere to sit and work, it's not happening.

So last Thursday night J and I went out to Uncle Bill's, a local 24-hour pancake place.  They've been in business FOREVER and are only 3 miles from our apartment.  I really like the atmosphere there. Anyway, we walk in around 11:30 and the on-duty waitress was up at the front.

I said, "one two-leg and one-four leg please."

Without pause she asked, "and do you, or does the dog, smoke?"

WOW!

She was so good and so fast, it took me a moment to respond.  Talk about a sense of humor.  She was a delight.  We chatted a bit through her shift.  But seriously, MY kind of gal.  I wish her all the best and hope to be lucky enough to find more folks like her in the coming weeks.

It was so LOVELY to go into a restaurant and NOT be questioned about J that night.  She was fully dressed in service dog regalia per always, and that was all the waitress needed to see or know.  She didn't ask any rude or inappropriate questions-- SCORE!!!  She even inquired if J needed water, and we went back regularly to Uncle Bill's when we lived in that part of town.  Interestingly, sometimes it's the mom and pop establishments that are more accommodating.  Maybe they know the law better, or maybe they're just NICER.  Word of mouth keeps them in business, after all.

What do you think?

Red Tape Rant

Today's blast from the past comes from April 2008.  I was making steady strides towards relocating (autumn 2008) and was getting my ducks in a row.  And was slapped with the realities of how modern medicine has become a business in a not so happy way.  From the standpoint of recovery, I put this before you as evidence how the 'system' makes things difficult for patients.  What if I had been unable to pay, then what?

I'm posting it today because I'm running into a similar snag, or at least a related snag.  Once I have more paperwork and information I will post what is currently going on.

I had to go into P-town the other day, so I ran quite a few errands.  Gas prices and all that.  One of my stops included a quick visit to my psychiatrist’s office to sign a medical release.  The agency [where I'm moving] that can help me obtain services (as in, EVERYTHING once I move) needs my files for evaluation/intake, etc.

Keep in mind that I have signed similar releases for my internist, and all other specialists.

As I filled out the release, I was shown a payment scale.  Evidently, the hospital utilizes a secondary company to copy and send records.  Ok- so far not a big deal.  Such a large practice probably gets quite a few requests and the staff doesn’t have a lot of extra time.  But apparently, I am going to be charged PER PAGE to have my records copied and sent.

NOT AMUSED

I have never run into this before, so maybe it's common practice.  But with all the docs, meds, consults, services, et al, that I’ve had in the last ten years or so, I’ve probably signed upwards of 50 releases for transferring files.  (Not counting the standard gunk for charging insurance, etc)  Not once have I been told that there would be a charge and I would be receiving an invoice.  Apparently, even if I wanted my records from the office for my own files---something I am legally entitled to---there would be the same charge.

Is this what we’re coming too?  Isn’t the fact that I pay $100 a pop for some of these physicians (because public aid doesn’t cover everything, or some of the better docs) sufficient to cover copying 20 pages and faxing them?  I mean, stick the stupid originals in the fax machine and send them to the correct location for pete’s sake!

Just another joyous addition to the clusterfuck that is the American medical establishment.

Hey, CRABFACE!!!! :D

Happy Birthday to my brother, Josh.  Love of my life, other than my J-girl.  Today he is 31 years old.

Much like his siblings, he was a trouble maker from the get-go.  Two weeks late, my mother had a horrible labor.  After many hours, the OB/GYN told my mother that he thought they should perform a C-section.  The family story states that my mother SAT up in the stirrups, grabbed him BY the tie, and said "DO IT!".

Josh was over 11 1/2 pounds, and his head was so big that he never would have make it through the birth canal.  100 years ago mother and baby would have perished.  Tomorrow is our father's birthday, so a healthy Josh and safe Mama were Papa's early presents!

So why am I telling you about Josh?  Well other than the fact that he is my younger brother whom I love dearly, his existence has greatly shaped mine.  When Josh was about 18 months old, he stopped talking.  We had no idea why.  I don't have many memories of that time, but I know that deafness was considered a possibility.

By the time I was in grade school we knew something was seriously wrong, but we didn't know WHAT.  Josh was enrolled in special classrooms.  He wasn't very communicative and obviously learning delayed.  By the time I hit third grade, Josh was attending a special school in the next town.

One day, spring semester of 3rd grade, I came home from school to find my mother had taken to her bed.  She was crying silently, and didn't respond to any of my queries.  My father needed to go to the bank and suggested I go with him.  I was all for that!  Going through the drive through was always a treat, the tellers gave us suckers!  AND I got to sit in the front seat.

Anyone else remember those days?  ;)

While we were in the drive through waiting for the teller to process our transaction, my father told me very gently and seriously that today Josh's teachers had told him and Mama that Josh would never be normal like me.  Papa said that he would never learn to read like me, or ever drive a car.  This may be the first time my father ever really spoke to me like an adult.

I was too young to truly understand, but I knew it was bad.  VERY bad.  My mother had taken to her bed.  My strong, capable mother who somehow handled everything through sheer force of will was crying at 3:00 in the afternoon, inconsolable!!!  So I began to cry.  In that moment I felt the loss, the grief of who my brother could have been and suddenly would never be.

Sometime over the next few months I made a decision.  I would be the child my parents never had to worry about.  I would be everything Josh could never be and more.  I would accomplish things for both of us.  He was already special, and I was already acting more a third parent than an older sister.  But now, he needed me like he hadn't before.  And my parents needed me.  Their burden had just multiplied.

And so, I took that heavy and unreasonable burden upon myself.

Years later we got a confirmed diagnosis of moderate autism and mild to moderate mental retardation.  We all did the best we could by him, and obviously mistakes were made.  I suspect I will return more than once to the topic of Josh, and how that he shaped my family and my childhood.  My reactions to him, my family life, and the decision I made all those years ago continues to impact my choices and actions today.  It influences how I approach my recovery.  How I interact with my parents.  And how I still try to protect them from worrying about me, especially my mother.  How I hide things about my disease and how I'm coping in an effort to uphold the promise I made to myself.

A promise which, tragically, may have caused more harm than good.

Today Josh has a job and lives independently in a group home.  He was even voted employee of the month in October 2008.  Once a month he comes to "10-20" to spend the weekend with my parents and go to church.*  Once every three weeks Papa picks him up from work to get a haircut and a meal with the folks before returning him to the CILA [Controlled Independent Living Arrangement].  He is healthy, and as happy as we know how to help him be.  Should my parents or I precede him in death, he is well-settled into his new life.  We've done the best we can, and I'm thankful to say that I know he will be just fine.

So happy birthday, Josh!  Crab-face, potato-lace!!!!

oh-- and the title for today's blog?  family joke.  ;)




*our parents house is no longer referred to as 'home' as far as Josh is concerned.  He is an adult now and the CILA is his home.  He goes to visit "10-20", his childhood address.

For Those Who Came Before

Today's post is a blast from the past, originally written April 2008.  I was working hard and long on my recovery, processing a lot of emotions.  I was working towards relocating and starting another stage of my life.  I was excited and terrified, and more than a little overwhelmed by the sheer amount of WORK involved.  

So it goes without saying that I was a little moody.  I was doing a lot of journalling in those days, and much of it made it onto the blog I had then since I type far more quickly than I write.  There is a small possibility that you have already seen some of these 'blasts from the past' on the other site, but it's all my original work.  And I have since pulled them off that blog so as not to overload search engines.

I'm posting this here, today, because it will be a GREAT springboard to discussing many of the matters I want to address here on the recovery blog.  I've fixed some of the grammar, and made sure to conceal my friend's identity.  Beyond that, this post is whole as originally written back in spring 2008.  Fair warning, it IS long.  As Cleo says, I tend to channel dead Russian novelists when I write.  I hope you enjoy it, and that it gives you much to consider.

Pagan Princess
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OMG I'm crying my eyes out!!!!  But--before everyone starts rolling their eyes and wondering what has set me off THIS time....... it's a GOOD cry.  Truly.

But be warned, I'm trying to process so this will probably ramble a LOT!

The last several years of my life have been tough.  To say I've lost my way, and much of myself, would be a massive understatement.  Even more difficult, is that the people who knew me way back when...... pretty much aren't in my life anymore.  I started pulling away from many childhood friends my senior year of high school for various reasons.  One of which--I didn't know how to bridge the gap.  Socially awkward doesn't even BEGIN to cover it.  By graduation I was a virtual stranger.  I was so hell-bent on making my own way, carving out a new life.  I had to get away from my home town to understand just how desperately unhappy I had been, and that the ways I handled my pain alienated and wounded those around me.  My good friend, Greg, helped me to understand that.

Less than six months after graduation my friend, Ben died, and my world shattered.  I knew I loved him dearly, but didn't realize to what extent he was my best friend until he was gone.  Even reading emails from friends back home hurt too much to bear for oh-so-many reasons.  Several of my high school friends made an effort to tell me about Ben as soon as they heard.  They didn't want me to find out in a bad way.  And, as I tried to cope with our loss, they gave me many words of wisdom.  Most of which I wasn't ready to hear.  Walking away helped me submerge my heartbreak.

Within the last few months, a childhood/high school friend and I have been in correspondence.  Our friendship, and our competitive battles, were legend.  Probably still are.  Within our circle of acquaintances, he and I probably defined love/hate.  Greg never felt intimidated by my father.  That or he hid it VERY well.  Probably the ONLY person from my youth to be that way, or the only male anyway.  He was the first friend to vocalize, albeit maybe not recognize, the great damage my family circumstances inflicted upon my heart; and that maybe, just maybe, my parents were partly culpable.
 

I keep MEANING to write Greg, and it keeps getting away from me.  And I'm so scattered most days that I have difficulty remembering what I have discussed with whom and when.  UG!  But as my 'sister' Spazz says: when in doubt, blame it on the meds.

Greg was also the first person to get ahold of me about Ben, and by FAR the most persistent.  He called my dorm room at 15-30 minute intervals all morning long until he finally reached me.  He, better than anyone, knew how much Ben's passing would affect me.

About two? weeks ago Greg sent me a quick letter.  I had started giving him answers to questions one night back in February, but stopped after my hands got tired.  (read: about 90 minutes)  As those of you who read my blogs can attest, once I get going I channel a Russian novelist.  My emails are worse.  Being tired, I told him I'd get him part 2 later.

But I didn't.

So Herr Greg sent me a quick note just to check in.  That by ITSELF melted my heart.  When, oh WHEN was the last time someone called or emailed just to check in?

Anyway, Greg is to be married this October.  Couldn't happen to a nicer guy, truly.  And I have my own, private reasons for rejoicing in his happiness.  (Read--I know things about him you don't.)  I asked him recently where he and his lovely finacee were registered, and what he might like as a wedding present.

His response was so moving and encouraging, that just thinking of it tears me up:

And, from your earlier message, please do not consider any tangible gifts. If you really want to get me something that I will honestly treasure, then strive to get out and stand on your own two legs again. You may have forgotten, but Pagan Princess strives on proving people wrong...and she has no limitations despite what anyone, casual or professional, may say. She just needs to be ready to decide it and it's done.......  Do that by October and I promise that you'll have given me my most cherished wedding gift.

With one short missive he brought back everything we once were to each other ages ago.  This is the man who instead of putting a trite quip in my senior yearbook wrote a letter to my unborn children telling them how blessed they are to have me as a mother--because they could never have one finer than myself.  Tonight there was another letter awaiting my when I logged in.  From his words, I can almost see the girl I was eleven years ago.  I have forgotten her, utterly and completely in so many ways.  I'm not her anymore, and I can't be again.  I'm wise enough to know that.  I'm also pleased with many of the ways I have grown beyond her.

***But some days I miss her so keenly that I fear catching a glimpse of the razor blades that surely must protrude from my chest.  What happened to the brash teen, so full of her own hubris that she'd defy God Himself just because she knew she could?  Where did the strong, intelligent, not-yet-a-woman go?  Is she still in here somewhere?  First arrogance matured to confident assertion. 

Next, slowly and then suddenly the sickness came.  The agonizingly slow death of the her soul leaving only the ghostly shell of who she once was.***

How do you recapture what once was, when knowing there is no going back???

Then tonight's missive, more loving and specific than that which came before, and I can't stop crying!  But the most confusing thing is, I don't know why!!!!

Have I lost the ability to trust those around me?  Those whom I love with a desperation that terrifies, that whatever words of encouragement they send my way bounce off the tattered armor I clutch to my heart?  Why should the words of someone who knew me THEN have the power to undo me in ways that no one since has been able to acheive????

I suppose the simplest truth---is because he DID know me.  In all my glory and gore, Greg knew me; loved me, understood me.  Sadly, we probably hurt each other as much as we loved because in our own ways we were each young, damaged, and hurting.  Were I to ask, I'll wager he could recall many of my exploits in such vivid detail, you would think the narrative sprung from his active artist's imagination.  He certainly entertained the masses with his embellished recounting of my varied follies!  A truer jester I have never known, Greg.  Fifty years ago he'd have given Danny Kaye a run for his money.

So, here's to those who came before.  Who see and know things about us we may WISH to forget  and thus keep us in line.  Those who know our hurts, and always save time for a hug and prayer.  

Today I am crying, but for the first time in a long time I remember how it feels to be blessed.

***

not all of this paragraph is entirely, originally my own.  I know that some of it was inspired by Elizabeth Wurtzel's Prozac Nation, and other written sources.  And I often lose track of what metaphors I think of independently only to see in print later.

 

 

Damn hormones

So last Friday night I was a bit weepy, and no idea why.  Had a rather maudlin mood going on, not quite a woe-is-me / feeling sorry for myself type mood, but it was out of the blue enough to annoy me.  I gave in to a little bit of crying, and when that didn't lessen the funk I got more aggravated. 

Anger is a good emotion for me; it's safe.  It allows me to feel something besides hurt, scared, or sad thus providing a good focus.  As a surface emotion is sometimes provides a good distraction.  What I found most frustrating-- other than the woe-is-me slant that my thoughts/emotions were taking-- is that I had no idea where the mood was coming from.  Granted, sometimes things surface, but I'd been having a pretty good day/evening.  So what the hell?

Plus in the back of my mind was the creeping fear:  not again.  Please not again.  I'm JUST starting to really even out after the disaster that was early February.  I want to keep going forward, not circle back.  I can be, and will probably continue to be for a few more months, paranoid about the course of my moods.  Never knowing what they might herald.

Saturday morning I discovered that my period had arrived overnight.  So, question answered.  I was a little weepy last night, for a different reason.  "Legitimate" feelings going on with that, but I pushed 'em aside to look at later.  I thought about blogging it, but knew I'd be up all night.  So I chose sleep.  Plus, I know that had I blogged about what's eating me last night there was a good chance I'd give in to the cry HARD core.  And anything I wrote would be colored by a lot of victim-esque word choices in my contemporary misery.

I shall probably write about it for everyone later in the week.

For today, my point is this--- hormones MATTER when it comes to mental illness.  Doesn't matter if you're male or female, fertile or not.  Hormones impact mood.  And not just the 'sex' hormones.  Wonky thyroids wreck HAVOC on 'normal' people.  So dear readers, if you feel a little off-- please go see your doctor.  It might not be in your head, or "JUST" in your head.  Sometimes a little bloodwork answers a lot of questions, and a daily pill can remedy a lot of headaches.

M. from Omaha

today's entry is again a blast from the past.  I originally journalled this back in summer 2006.  Looking at it now, I can see how early I was in my fledgling recovery.  Some of the themes still hit close to home on bad days, but also shows me how far I've come in the years since.  I think it will give many of you insight into how I process things.  And how much of an utterly clueless DORK I can be when it comes to the opposite sex.  Intellectualizing everything usually isn't the smartest course of action.  Interesting as I read it now, I wonder if I was trying to convince myself, or the all-knowing journal-person.  It feels maudlin, reading it now, but it's how I felt at that time. 

and remember kids-- feelings are neither good nor bad, they just are.

Well, it was fun while it lasted.

I joined a social networking service (emphasis on dating) in March.  Thus far it hasn’t yielded many results.  But that’s neither here nor there.  In May I started communication with M. from Omaha.  I thought this one had potential.

M. is intelligent, educated, articulate, cultured, funny, a successful businessman. But the real kickers------------he loves to ballroom dance and is a UU.  I can’t remember the last time I went dancing, just how sorely I miss it.  I know it was back during my junior year of college, and that’s been six years now.  Happily, as a Unitarian his philosophy would be VERY compatible with my pagan faith.

We had amazing conversations.  He was a wonderful flirt.  A friend of mine refers to it as “intellectual foreplay”.  Very accurate statement.  He stimulated my mind in challenging and delightful ways.  And the flirting was something I’ve nearly forgotten.  Certainly enjoyed it.   It’s been a long time since I’ve had a man express appreciation for me as a woman.  In ANY respect, let alone been able to access my mind at the same time.  The substance of our communiqués was sustaining on several levels.

But a little over two weeks ago, he finally asked about J.  While we hadn’t as of yet discussed particulars, I’m kind of confused how he missed her.  Must not have been paying attention.  I mention her right on my profile page.  The section specifically states “List three things in your life for which you are most thankful”.  I listed “my Labrador J”. After the Ren. faire at Jubilee I vented a bit about while the day was fun, she had been a nightmare.  He questioned who she was.

I was short and candid--------------J is my seven year old yellow Labrador.  She is also my service dog. Are you scared now?

The inevitable response came------------Are you blind?

I kept my answer brief but detailed.  Emphasized the positive such as my stability, careful planning, docs, support system.  Used the metaphor of denying a Type I diabetic her insulin.   I also enclosed several files of reading material. From laity to professional grade intel, complete with graphics.  Told him to digest and feel free to ask any Q’s he has.

And I haven’t heard from him since.

At the 8 day mark last week I send him a short missive.   The standard how are you, how you been, haven’t heard from you, hope you’re well, etc.  It has been over a week yet again, and I’m fairly certain he’s a lost cause.

I’m afraid I can’t suppress my disappointment.

I can completely understand how someone does not wish to pursue a relationship with someone differently-abled in the clinical sense of the term.  I know I do not.  While some may feel that I am being <fit negative adj here> in this desire, it is more a case of self-preservation.   I know I need a certain amount of stability and support.   I need a partner to be able to provide that on a consistent basis.  Bare fact.  An individual who has a certain degree of severity regarding their own challenges would not be able to provide that.  Neither he nor I need that stress and heartache.  Especially considering that mental illness can easily become short term, long term, or permanently disabling depending upon how the fates have aligned.

There is a part of me that wonders that if I fall into the abyss again, if I’ll be able to get back out.   It gets old, and more difficult each time.  And I get tired.  So very tired of fighting the good fight every single day.   I highly doubt my parents could survive me fully tanking again.  It would probably kill my mother.

I promised myself I would never be re-admitted to a psych ward.  And I meant it. I would rather “go home” permanently than be that sick again.  For the record, I self-admitted. So part of me was thinking wisely.  **

While I give thanks that my health has been fairly stable for a few years now, it was not always so.  There were YEARS when I was non-functional, to varying degrees of time and severity.   I’d stop eating, bathing, communicating with others.  Sleeping 18 hours a day only to get up to semi-watch tv was fairly common.  Having a basement apartment 10 miles from campus was one of the more foolish decisions I have made in the last ten years.  I depend on my support system at unpredictable times.

J does quite a bit, but she doesn’t talk, and can’t dole out pills.   Though she can bring them to me as well as water if told to do so.   Of course, I have to be VERBAL ENOUGH to give her the commands.  I forget how bad it can get, even for 24 hours, if I’m not mindful of it.  No amount of chemicals can fix everything, or keep me on the straight path by itself for any long stretch of time.

So I understand his decision.   I can’t help being hurt by it.   It’s discouraging.  And I feel that he could have had the courtesy to at least inform me that he was no longer interested.  It’s taken me a VERY long time to feel worthy of a partner despite my illness. Fairly consistent work for a good two years now.  This development doesn’t help that self-esteem issue.

I suppose what makes me so sad some times, like this evening, is how I see how others’ lives are unfolding.  I keep running into high school friends/acquaintances who are partnering up, starting families.  Quite a few have been married for years and have multiple children.   I have two adopted nieces and one nephew among my inner circle.  Ages 18 months to five.   Close friends who are very content with their partners.   Good, stable marriages, many of which are true mated pairings.   I can’t help feeling that I got left behind.

Feeling this way is a major pain in the ass. I do not regret the path I chose.  I was not ready for a long-term partner or a family earlier, even before the disease took control.  I am only now getting to that point.  I was education/career focused for a VERY long time.  Very one track mind.  Fairly ironic since I currently have neither career nor college degree.  Ten years ago I’d have thought I’d have my PhD and be working on tenure at a good university by now.  I wanted to be well-established before I thought about a major evolution in my personal life.  And I am thankful that I had the wisdom to NOT attempt either a physical or romantic partner during the times that I was NOT stable enough to maintain myself, let ALONE a relationship.

No one wants their partner to fall apart.   It’s hard when it happens, and not everyone has the strength to see it through.  And no one with a fair amount of wisdom chooses someone who is ill to the point of disability.  And I mean dis-ability, not someone functional who has a physical/mental challenge.  That one is my harsh vision of reality.  Feel free to disagree, but please don’t beat me up about it.  I know some people are capable of giving that much.  I am NOT, nor I don’t WANT to try.  At least not this lifetime.

That is why it has been so hard for me to even fathom someone wanting to be involved with me.

The last psuedo-date I had was over a year ago.  It wasn’t really a romantic relationship.  He is a very good friend with whom I had a “special friends” arrangement.  Our benefits were limited in scope and frequency.  Over time the situation caused me more pain than fulfilment.  Being a place-holder for someone who you KNOW doesn’t want everything with you in the long run…………… After a while my emotional needs just weren’t getting met.  We used each other as surrogates, and we both knew it.  Me more than him.  I walked into it eyes open, albeit not cognizant of the possible repercussions.  He is one of my closest friends, we love each other dearly, and are in regular contact.  We both suffer with him now living out of state.

This wanting a relationship is a new feeling for me, and I’m not quite sure how to handle it.   Ever since I reprogrammed the whole Western “you must have a wife/husband to be happy” mentality in early college it hasn’t been an issue. Next I tackled the “you must find your one, true soulmate to feel complete." Interesting that I am no longer satisfied to be a single female.   I don’t know how much of it is loneliness.   Maybe because I’m approaching 30.  Maybe because I can’t remember the last date I had.  I know there is a part of me that sorely misses the emotional intimacy that comes from dating someone.  Being around happy couples frustrates the hell out of me some days.

I really don’t know.  Thankfully, I get fulfilment and satisfaction from many things in my current life.  I am still balanced enough to feel complete without having that elusive partner.  If that changes, I will REALLY be in trouble.

** "go home" is a phrase referring to death.  Go home, to where one is pain-free be with those who you love and have gone before.

The Pond is Still

Today's post comes from a journal entry I originally wrote back in late May/early June of 2005.  J had been with me for about 9 months, and I had returned to work full time in late March.  It was a big adjustment, and very tiring.  I was working in a call center with all the fun that entails.  ;)  The company was very good to us, and gave me all the help and reasonable accommodations that I could have wished.

I had been having a few bad weeks, not sleeping well at ALL.  It was starting to impact my work and creating social problems for me at the office.

The only blessing I can see to being so heavily drugged, is that I slept straight through the night for the first time in over a month.   Don't particularly care for the zonked out, OD feeling I'm experiencing.  I'm overly calm and quiet on the phone, not myself at all.   I understanding how Shawn used to complain about being over-medicated when we were kids, feeling trapped inside your head yet outside your body.

I couldn't move quickly it I wanted to.  I just need to trust that the doc knows what he's doing with these significant med increases.  He even added a strong neural depressant--which I think is the main reason for this continual stupor. Maybe in a few days my system will adjust.  God I HOPE so!  I feel like an exhausted shell of myself.   Unable to even hold my head up and stare down the jerks who rudely spoke to and stared at me yesterday.  I don't even have pride to fall back on in this state.

I lay down for 10 minutes, the last few of my lunch break, and ended up sleeping for over 45!  My supervisor is going to kill me.  Especially after the lecture I got just last week on schedule adherence.

Phillip's been taking J out to the bathroom as I sit here like worthless bump on a chair.  Out of sorts--as Phillip puts it--doesn't even begin to scratch the surface.   It feels as though it takes eons for a single coherent thought to bubble up from the depths of my mind.

The pond is still, unnaturally so,
so that any breeze ruffling through the surrounding trees doesn't disturb the water.

The night is dark, no moon
                                              or stars,
and yet there is a faint light to see by.
No animals--

nothing stirs.


Just my barren, darkened mind
                                                         trying
to product thoughts,
wasting for lack of light.


Longing for sleep, yet
                                           fearing what comes
with true consciousness,
the realizations of pain caused.


Blissfully, another pill sinks beneath the surface of the pond.
For here pain is
                              dulled
                                                 and guilt
cannot intrude.

Now and Then

Good evening, bloggers,

I've not been the most accessible as of late, many things going on in Princess-land.  Work, studying, mid-terms, weird weather.  It's all a girl can do to keep her head on straight some days.

I wanted to check in and let everyone know (ok, my two followers and beloved sister know) that I'm still alive and well.  Also to let everyone know what to expect this week.  As I start this blog I find myself going through old writings of mine.  Seeing what I can reuse.  Some things bear bringing out of musty journals and into the light of the typed word.  Some things I should revisit for my own continued processing.

And some things are being left buried.  Permanently.

But I thought this is as good a time as any to tell you all that on occasion I will be posting old context.  This content will be largely unedited, sometimes merely transcribed.  Each entry will have a slight intro letting you know that it's a blast form the past.  I feel these older works give a nice contrast of who I am now verses who I was then.  Or more accurately WHERE I was then.  Different places in my personal timeline and recovery story.    It is my hope that these will be of help to you, dear reader, and will open more areas of discussion among people who care about mental illness and recovery.

And for those of you who accuse me of being lazy-- reading, typing, and considering what I want known to the public is taking at least as long to cobble together as writing fresh.  ;)

Tomorrow's post, and at least one post this week, will be blasts from the past.  I hope you find them interesting.

Be Well,
PaganPrincess