Giving Support Equals Receiving Support...

Two years ago I started our local (and only state) chapter of the Depression and Bipolar Support Alliance.  I was so frustrated as I tried to build a community of support for myself and my recovery, because support groups were almost nonexistent.  

The really cool part about developing this group to give other people support through their mood disorder recovery has given me so much in return.  I have met some really awesome people who show up every week.  I'm continually amazed at the level of intelligence this group has collectively.  Everyone is so solution focused rather than dwelling on the negatives.  We can cry or vent about the hard parts and then move on to supporting each other with details about how we have weathered similar storms.  In any given group I see tears of pain, tears of laughter and countless moments of support, friendship and understanding.  I get back multiples of what I give. 

Sometimes running such a support group is a real challenge since I, too, struggle with the disorders we support.  At times my motivation wanes and I grow disorganized and disheveled by the ups and downs of my moods.  I experience great social anxiety and dread leading a meeting and having to be "up" or at least engaged when I really want to isolate.  Sometimes this group pushes me to act in ways that are GOOD for me, when otherwise I would fall into old habits and feel sorry for myself.  So while I started this group hoping to help others, I benefit just as much as others, if not more. 

I have lots of goals and dreams for this organization.  We are officially a nonprofit and can apply for grant money.  We are tax-deductible for generous donors.  We can branch into groups for specialized groups - faith based support, friends and family, children and teens, men's only, women's only, etc.  We can create a drop-in center where people can come and get information on mood disorders, borrow materials from a lending library and even come for support before they reach crisis level and have to enter a hospital.  

All these goals take planning, time, money and resources I don't yet have.  I'm looking into potential office space that would work for our drop in center and provide a meeting room for our groups to meet.  I need to apply for grant money to cover this expense and many of the expenses I have provided out of pocket - mainly envelopes, labels, business cards, advertising brochures, fliers, postage, paper, copies, newsletters, etc.  I do have a couple of generous group members who have provided important funds for reaffiliation and other important dues.  This makes life for me far less stressful. 

I'm excited to see where DBSA Cheyenne can go this year and beyond, and I'm excited to challenge myself to doing more with this organization to help me and others with our day to day struggles.  Mostly I'm excited to see the way that the positive influence of the group changes other lives, in addition to mine.

Facing Fear...

I mentioned in my last post that I am starting over when it comes to medications and managing my bipolar disorder.  I began seeing a new psychiatrist in December and I'm confident in his training and research and believe he is the number one treatment provider in this region and maybe in the US for soft bipolar.  "Soft" bipolar is also known as Bipolar II - it basically is the less serious form of bipolar disorder - but because of its nature, can be very hard to treat.  Bipolar patients generally do not find relief from the use of an antidepressant alone.  Most patients need the added boost of a mood stabilizer.  The fact that I was unresponsive to many of the antidepressants I was on over the years relates to the misdiagnosis I had. 

Originally I was diagnosed with clinical depression.  When my last psychiatrist suggested that she was leaning toward a bipolar disorder I was having none of it.  I thought of bipolar disorder as an illness that caused outbursts of rage or frantic behavior, and that wasn't my experience with my own illness.  I was mostly just depressed and didn't get the "upswings" that some bipolar patients even enjoy.  It took over a year to come to a place where I accepted that might be the right diagnosis.  My new doc asked me if I felt the diagnosis fit and I said yes.  Given the 30+ page stack of paperwork I filled out for him, he agreed completely that I am indeed a soft bipolar gal.  And I'm okay with that. 

So the next question becomes, how do we treat it?  His first move is to greatly increase my thyroid meds - both t3 and t4.  He's done extensive treatment on the link between thyroid levels and bipolar disorder.  I'm on board with that and we've taken that step.  

Then the hard part begins.

I am on very high doses of Effexor XR and Zoloft (generics).  So high that the doc said, "I've been known to subscribe high doses of meds, but these are high doses of meds."  Although the high doses of meds I'm on have worked better than most, I'm not where I should be in many respects.  Some of my obsessive and compulsive issues remain untreated despite being on two meds that would treat full-blown Obsessive Compulsive Disorder (OCD).  This is in part because I am not on the right combination for my specific biological makeup and the type of bipolar disorder I have. This means I must be taken off of the drugs I have been on for over two years.  It also means withdrawal. 

Withdrawal is often thought of as associated with illegal drug use, but it applies to prescription drugs as well.  Potential withdrawal symptoms for Effexor XR include:

• balance, coordination issues, dizziness and even seizures (extreme case scenario)
• ringing in the ears or a feeling of a sort of "shock" in the extremities
• agitation, difficulty sleeping OR fatigue and oversleeping
• nausea and vomiting
• irritability, nervousness, leading to general anxiety
• depression & suicidal ideation
• hypomania (fast talking, distractable, jumping from topic to topic
• confusion, unclear thinking
• headaches
• flu-like symptoms
• nightmares and sleepwalking
• tremors

As for Zoloft, withdrawal symptoms are similar.  Because it's rarely advised to discontinue medications all at once and without close supervision, I will be slowly tapering off these medications.  Even a slow tapering can lead to a wide range of symptoms.  It's pretty intimidating to know I have to go through this.  Been there, done that, got the T-shirt. I can take the "safe" path, stay on the meds and continue to exist in life as I currently do - neither deeply depressed but also not generally experiencing a sense of well-being.  And it's honestly tempting to do that.  The fear you do know is sometimes more comforting than what you don't know.  Yet, I also know that a much better of quality of life is available to me if I'm willing to let the majority of the decisions take place out of my hands by a trusted professional. 


That is not to say that I don't have power in this situation or control.  New doc has guaranteed that he can help me feel better.  He also says it will probably take one to two years.  It means a lot of patience.  In his words, withdrawal from my current meds will "be hell".  Been there, done that, got that t-shirt.  


And while I really, really do not want to go through all of this again, I have to keep reminding myself of two things.  


So much possibility for my life exists in the treatment of my symptoms.  I have so much potential for happiness, satisfaction, and the opportunity to make meaning of my illness if I can get on top of it. 


But most of all, I remind myself that I have survived.  As much as I have no desire to go through another emotionally and physically daunting journey, I know I can do it because I've done it - not once, not twice, but at times on a daily basis and even on a moment-to-moment basis.  That helps stem the fear and leaves the power within me.  Ultimately, my well-being depends on my ability to be open to possibility.  And while it would be easier to be bitter and resentful at "having to go through this again", giving up and refusing to try again would make everything I've accomplished and survived in the past 8 years worth nothing.  All the trials and failures and successes would have been for nothing.  


My attitude and optimism will ebb and flow through this process.  My spirits will dip and my motivation will decrease even more so than it has already.  It will be tempting in the moment to just take the "easy" way out and stick with what I've got now.  I will allow myself a little time to feel all that and pout about it.  Then I'll push on and keep my eye on the prize.  


I'll continue to document this process on my blog, both to raise awareness and to show others going through this that they are not alone.  Your best wishes are much appreciated as I begin the next leg of my journey. :)

The Pain and Expression of Depression...

I'm deeply saddened by the death of a local 13 year old boy who is thought to have taken his own life.  I'm also angry that another person has succumbed to the pain of depression and believed only death would soothe it.  

I know that kind of pain all too well.  I, too, have believed that death was the only respite from the deep grief I felt.  I've blogged about my own suicide attempt here.  It's not something I talk about often, because few people understand.  Suicide is still a taboo subject.  It's victims are painted too frequently as weak and selfish.  It's impossible to find the words to express the kind of pain that makes one consider suicide, so sometimes the only expression becomes the act itself and the promise of sweet relief. 

I don't question why a person chooses suicide.  I understand why they have come to that decision.  What frustrates me, however, is the lack of resources available to those of us battling depression.  What frustrates me, is the lack of willingness for others to understand that depression is more than just the blues.  What frustrates me is the belief that those of us with depression need to "buck up" or just keep our chin up.  Depression is an illness that requires treatment the way any other disease does, and as much as those of us with depression would like to pull ourselves up by the bootstraps and get better, it's often out of our hands entirely.  

I've struggled with depression for twenty two years.  I didn't seek treatment until I'd had the disease 14 years.  I've been in treatment since January 2004, so a solid 8 years, and tonight as I write this I am no closer to being "cured", well, or symptom free than I was in 2004.  The only difference between the depressed person I was then and the depressed person I am now is that I no longer hold suicide as an option.  That was a very difficult decision to make, and one I made mostly because I won't hurt the people around me and I won't let others with depression see one more person "give in".  It doesn't mean that I don't think sometimes that death would be preferable to the pain of depression.  It doesn't mean I don't at times passively wish for that permanent reprieve.  It simply means I will persist in my attempt to treat my depression and bipolar disorder so that I can live the fullest life possible. 

This is a monumental task.  I get angry when, as a result of a suicide, people wonder why the victim didn't reach out or ask for help.  They make it sound so easy, so innocuous.  But sometimes, even after we've asked for help, we end up feeling alone.  Why, after 8 years of treatment am I back at square one in seeking treatment?  The biggest reason  is the lack of resources I have had since moving back to WY.  When I first sought treatment in 2004 at my college in Nebraska, and later at the doctor's office, I was fortunate to find people who were monumental in helping me get through the last two years of college.  My therapist was amazing and charged me a mere $10 per session instead of her standard $90 based on my student status and inability to pay.  I saw a psychiatric nurse practitioner who was also very experienced.  Due to a program they had at her clinic I saw her as often as necessary for free.  The drug companies accepted me for their patient assistance programs and I had the medications I needed despite my lack of health insurance. 

Fast forward two years to my move to Wyoming.  Since moving here there has been a mass exodus of physicians.  Our doctors, for whatever reasons, have left Wyoming for opportunities in other states.  Because of such moves, I have seen three different psychiatrists in Cheyenne, and finally went to Ft. Collins where I'm on my second.  Five doctors in eight years makes treatment hard.  

Then there's the issue of therapy.  It's widely known that the best chance a person has with depression is a combination of medication and therapy.  Medication changes our brain chemistry while therapy changes our behaviors and perceptions.  Together they can work magnificently.  Without both, though, a patient is not fully armed in the battle against a mood disorder.  I had a wonderful therapist here who was the fourth therapist I'd seen before finding someone I liked and trusted.  I'll write another time about the difficulties in finding quality therapy, but the point I'm getting to is that she, too, left Cheyenne in 2011.  Thus began a new search for a therapist.  I'm on my third one this year, and I'm very grateful to have his help and wisdom, but therapy is not easy!

The few doctors and therapists that remain, as well as the one mental health treatment facility that serves patients on a sliding scare, are incredibly overwhelmed.  Waiting lists are months if not more than a year, long.  I waited on such a list for 9 months during a period of time after I was married but had no insurance.  Drugs continue to be ridiculously high and more insurance companies are declining to cover certain medications.  My own health insurance company has stated it will allow me only half the dosage of my current therapeutic level beginning January 1st 2012.  They seem to suggest that the medication is merely for my own pleasure and enjoyment rather than lifesaving.  But what the heck if 600mg is what I require - 300mg is what is "allowed". 

So here I am, 22 years into living with depression, capable of making rational decisions when it comes to my mental health treatment and providers, and I am no closer to finding relief than I was at 8 years old.  How can  anyone living with this disease not find that a bit daunting?  And if I feel this alone in my fight at 30, knowing what I need to do and who I need to see, how alone must this little boy of 13 felt?  

Most people would not deem suicide courageous - and I don't in any way want to say I condone it or glorify it - however, I get it.  And when I think about this little boy's situation and I picture him, alone in the dark and taking his last breaths, and knowing what goes through one's mind as one waits to die, I can't help but think him brave.  For this little boy chose the uncertainty of death and dying as the preferred path than any longer bearing the pain of his life.  And that path was no easier to take than to face the demons themselves.  

I'm angry that there are not more resources for those of us with mood disorders.  I'm angry that there isn't a magic solution that treats body and mind.  I'm angry that there are not enough doctors to go around, not enough therapists and not enough funding for a large number of people to seek what help there is.  I'm angry that depression interferes with my life on a daily, and sometimes hourly basis.  I'm angry that a precious child had so few resources that he ended a promising life.  

Most of us with mood disorders have friends and family who love us, but that doesn't "fix" the illness.  I know that personally, I minimize the symptoms so as not to worry others.  I smile when I really wish I could cry.  And even though my friends have said, "Call me anytime!  Even at 2 am", that the reality is that it's impossible for me to make that call.  I have a hard enough time asking for help from the people I pay for it, let alone someone else.  When anxiety keeps me awake all night and racing thoughts give me little rest, the reality is that I feel very alone.  Even if I make that call or go downstairs and wake Kyle, no one can really help alleviate the absolute loneliness I feel.  My symptoms don't show the way it might if I had another illness.  People forget to check in on me because they can't "see" the toll it's taking on me, and since I don't want to  be perceived as feeling sorry for myself, I don't let it show how much I need their support.

Depression is not a rational or reasonable illness, thus those of us with the illness often act irrational and unreasonable.  So while it might seem "silly" or unfathomable that this dear child - or anyone - who has killed himself wouldn't just ask a friend or family for help, to me it's understandable. Before we keep encouraging people to "reach out" we need to make sure there are substantial resources to reach out to.  Otherwise, it's impossible to feel heard and acknowledged and leads to isolation, withdrawal and deeper depression.  


I don't pretend to know what the answer to all this is.  I just know that from my own experience, especially in this past year, that the resources we need just aren't available.  And until there's attention to this, suicide will continue to be a viable option for some people. 

One Little Word 2012...

Photo by Dan

Playing along with Ali Edward's One Little Word for the second year, I've given lots of thought to what my word should be.  Instead of making resolutions that I know will break, I pick a word that I want to see more of in my life for the coming year.  Last year I picked "peace", and as much as I was looking forward to seeing what new word picked me for 2012, I have concluded that my word will once again be "peace".  I lost my footing some in 2011 and I didn't put as much effort into creating peace the way I intended.  I am already taking some steps to change this in 2012.  

Kyle and I are taking Dave Ramsey's Financial Peace University starting this Wednesday.  Several friends or family members have already taken this class and have reaped various rewards from it.  I will post as we take this journey to bring us some financial peace.  I am very excited about the class and the prospect of, someday, being debt free. 


I am seeing a new psychiatrist, and though it may take a year to two years, he promises he can help me find the medications I need to treat the bipolar disorder I have.  He says I present a challenge to him, but he is sure he can help me.  That is a considerably life-changing promise.  Treatment of my bipolar symptoms could mean more creativity, better ability to write, and return to gainful employment, all of which mean a considerable amount of peace.


I am enrolled as a member of Fitness One.  I will endeavor to lose the weight I regained, as well as the last twenty additional pounds I needed to lose to reach my goal weight.  It's been three years since my gastric bypass, and while I'm still much smaller than I was when I had the surgery, bad habits have worked their way into my life and psychiatric medications have caused unwanted weight gain.  I know I will be more at peace with my depression and my body size and shape if I workout regularly. 


Kyle and I have made some important decisions about our family and the lifestyle we will have together.  I will be sharing these decisions as part of my blog in the coming year.  I will be working to be at peace with the way life is when it's out of my control, and to be at peace with the decisions we make as a team. This will bring me peace in my marriage, my life in general and make peace in other avenues more attainable.  


I'm going to apply for grant money to expand the services my nonprofit depression and bipolar disorder group offers in order to bring more peace to others, as well.  


2012 offers a lot of hope for change in many great ways, and I intend to put much effort into making those changes happen often and for good throughout the year and into my future years.  Peace is something I will continually have to strive for.  I won't get to the end of 2012 and simply have acquired peace for good.  Just like happiness, peace ebbs and flows and we must make the most of the moments of peace and happiness as they happen.  


What's your word for 2012?

Project Life 2012 Supplies...

As I showed yesterday, I am doing Project Life in 2012.  I was super excited that the kit I ordered has  nearly everything I need for the endeavor.  One of the reasons I love Project Life, though, is that I can embellish my pages as much or as little as I want.  The kit gives me the foundation, and then I get to get creative and put my own mark on it.  In addition to the Cobalt kit, here are a few supplies I've been gathering over the past month. *Sorry for the glare - my craft room needs better lighting!

Journaling cards from Amazon.com. 

These Karen Russel Narratives stickers from Hobby Lobby.  Love these.

Making Memories Word Fetti Stickers (family)

Also from Michael's.

K&Company Embossed Life's Journey Words & Sayings from Michael's.

American Crafts remarks stickers in white (getty)

Binder Clips with the months on them from Office Depot.

Office Depot had these on Clearance for $1.  Thought they might come in handy.

Tiny Attacher Tim Holtz from Hobby Lobby.

So these are the products I'm going to use.  Hopefully that will get me through at least half the year and if I start to run out or get bored I can always get some more in the summer.  We have three major craft stores in Cheyenne, but I tend to get discouraged by the types of supplies they have.  I have a hard time finding embellishments to fit my taste.  I do shop online a little, mostly from Amazon, but it's hard for me to judge size and color from the computer screen.  It's more fun to pick stuff out in person.  I may see what Ft. Collins has to offer next time I am down there.  

Tomorrow I will show you my craft area set-up and show you how I've organized my materials for Project Life!

Project Life 2012...

I've seen lots of bloggers post about Becky Higgins' Project Life for some time now, but it wasn't until late 2011 that I really took a look around her website to see what it was all about.  To keep you up to speed if you don't know what it is, it's basically a system she has set up with kits to help people collect photos and memories through the year.  The kit is set up to capture one photo and journal about it each day of the year, but it's very versatile and I've seen all sorts of formats pop up in the blogosphere.  It's a look at the moments of our lives that usually aren't scrapped.  We tend to scrapbook the big events - birthdays, holidays, vacations.  Project Life captures the basics of our lives.  

This is my kit.  I loved the colors of the Cobalt design, and once it arrived I was NOT disappointed. 

Let me just say, the kit smells SO good - like the smell of new books in the bookstore.

  
Project Life appeals to me for several reasons. 

• As noted, the project is customizable to individual needs.  I will be looking at doing a weekly format instead of a daily format.   I know I will never keep up if I am stressed out about finding something to document every day.  Enough happens in our week that I can document some decent day to day memories.  
• I turned 30 this year, so this is a great way to document the start of a new decade for me.  It will also be documentation of my marriage, my 2 furry babies, and who knows what else.  I'm excited to see what comes up for me when I reflect on this project at the end of 2012.  Even though Kyle and I don't have kids, I definitely want to remember the daily routine and way of living so I can have it to look back on years from now. 
• My medications have the unfortunate side effect of inhibiting my creativity.  This kit comes with coordinating materials. In addition, I bought the protective photo sleeves that go with it.  All I have to do is slide the photos into the pockets and use the included journaling cards to document memories, thoughts, places, names, or anything else.  I can add as much embellishment as I want, or leave the layout with just the materials from the kit.  This takes a great deal of stress off of me, as I don't have to try to coordinate or decide on layouts.  The beauty is, there are lots of different layouts for the sleeves, so I'm not confined to the same layout throughout the year.
• It's a very organized process which, for me, is essential.  I am still fine tuning my set-up in my craft room and folders on my computer for storage of photos to print.  I will share that at a later date.  

So that's why I'll be diving into Project Life 2012.  I'm pretty excited and a little bit hopeful that this project will jumpstart my creativity and get me motivated to do more crafting. 

Tomorrow I will share photos of the awesome supplies I've gathered up for this project. 

A Little Update...

Dear Reader, I have not been so great at updating my blog lately, but I vow to do better.  I have a million and one excuses for my recent absence but it all boils down to lack of motivation and preoccupation with other items on my plate.  Here is a brief list of updates.  I will be elaborating more on each of these points in future blogs. 

• I'm jumping on the 2012 Project Life bandwagon to document a year in our life.  I'll be using the Cobalt kit. 
• I switched to a new psychiatrist to try to find a better treatment for the bipolar disorder.  New Doc assures me we WILL find the magic cocktail that will treat it and the connected issues, but he suggests it may take 1 to 2 years.  This means more med changes are ahead for me.  Some of these will be very difficult transitions, as some meds I am on have awful withdrawal symptoms.  I shall try to be a patient patient and remain open-minded.  I will be attempting to document this process as best I am able.
•  I will finally get some pictures of our home up to show the new floors, picture walls and paint.  This will be sometime after I get the holiday decor down. 
• I still need to do a post to wrap up my 30 before 30 AND create my 40 before 40 list. 

I'm struggling with depression big time as this year wraps up, and trying to keep my chin up and eyes on the absolutely wonderful gifts life shows to me daily.  I really have no reason to be depressed, as life is not too shabby.  That's the nature of the illness, though - it can really beat me down, even when I have little to complain about.  Those are the hardest times for me.  I could rant and rave about how crummy life is if I was handed horrible experiences.  It's hard to understand where depression comes from when I have much to be grateful for.  It's a reminder to me how unreliable this illness is, and how important it is to have my support network of doctors, therapists, family and friends, because my world can turn upside down with relatively little reason.  I don't mean to complain, but rather paint the realistic picture of what life is like with a mood disorder.  More on all of this as we begin 2012.  Have a fabulous last week of 2011 and may your New Year be the best yet!