Baby Steps

So I finally heard back from my case manager yesterday.  He let me know the referral for Art Awakenings has been hand delivered to them and he plans to deliver the one for CHEEERS today.  He swung by my place for me to sign my updated treatment plan to make sure there would be no complications in the referral process.  There can be a waiting list for Art Awakenings so it might be a couple weeks before I hear anything from them.  I'm not sure how long it will be before my intake with CHEEERS might take place.  Hopefully within a matter of days but I'm prepared for there to be a delay in that one as well.  The wheels of bureaucracy tend to grind away at a slow pace I guess.  I have mixed feelings about the referrals.  I know in my heart of hearts they will be good for me but the agoraphobic that I am wants to just be and stay at home and not go out in public.  I know from my experience with Friendship that once I got used to getting up and going on a daily basis I grew to look forward to it.  I'm sure once I start getting involved in the groups I'll soon get used to leaving home and being at least semi-active.  I just have to take baby steps and give it a fair chance to be something I'll get into and enjoy.  Brian is a great help in providing encouragement and reinforces that small steps will lead to possibly big things.  This weekend we're working on decluttering my place.  Laundry is almost completely done and the kitchen is pretty much spotless now.  We're going to start sifting through unpacked boxes and getting a bunch of clothing ready to be donated.  Downsizing and consolidation is the key as I've amassed way to many clothes over the years.  I think there's going to be a lot of happy bigger guys that will end up being the recipients of my donations.  I know places like Goodwill and such so rarely have clothes in big sizes for people like me.  Hopefully someone somewhere will be pleasantly surprised and my excess apparel will be a huge benefit, no pun intended.  I'd also love to get my books unpacked and onto the bookshelves so I have access to them.  I have several bibles packed away that I'd like to start using and studying more.  They would come in very handy with my participation in the online gay Christian chat rooms.  Jacque and I would also like to start reading the bible together as well.

I get overwhelmed easily and when that happens I tend to shut down altogether.  I have to actively work hard to prevent that from happening.  That's one of the biggest reasons I have to take things in small steps.  While I feel like I'm making progress I know I still have a way to go.  When I start thinking of the big picture, of being involved in Art Awakenings and CHEEERS, of transitioning into a roommate situation, and of staring at all the boxes and work that's yet to be done it becomes pretty easy to start catastrophizing.  That's when I wind up curled up on the couch mindlessly watching TV and putting off doing anything.  Having Brian here is turning out to be exceptionally positive.  Not only do we get along so well and thoroughly enjoy each other's company but he is a huge motivator for me.  He reminds me about taking baby steps so as not to get too overwhelmed.  He picks up a great deal of my slack in getting things done and keeping them that way.  He feels strongly that helping out is one way of contributing to cohabitation and that works for me as well.  We're definitely making progress one baby step at a time and I think our living arrangements will make some of my friends and family happy.  For some time they've emphasized that living alone in the long term is not good for me and deep down I know they're right.  Communal living, however, is just not an option at all.  I've heard about too many horror stories, bad experiences and circumstances that are, shall we say, much less than ideal.  I just couldn't be comfortable living with people I didn't know or trust.  They say that people come into your life for a reason and I truly believe Brian and I were destined to be roommates.  His friendship has been such a blessing and it seems the stars aligned in just the right way to bring us together.  Getting to know each other over the past year or so and having the opportunity to try things out before moving into a permanent situation have been just the baby steps I've needed to be confident and comfortable going forward.  I think not getting an immediate response from my case manager has also been a blessing in disguise.  I believe had I jumped into another program with no break I wouldn't have had the opportunity to kick back a bit and give focusing on the roommate thing a fair shake.  God knows what's good for me and He seems to work things out in His own way so I need to let go a little and let God do his thing in my life.

Spinning My Wheels

Did you ever have that feeling that you're just spinning your wheels and not getting anywhere?  That's where I am at this point.  I still have yet to hear back from my clinic regarding referrals to the groups I had wanted to try out.  Despite numerous phone calls to my case manager there has been basically no response.  I also haven't heard anything regarding my new case manager.  I should have called my clinic and asked to speak to the case management supervisor but I haven't worked up the nerve.  I have a definite problem advocating for myself.  Even though I'm angry and frustrated I feel guilty going to a supervisor to file a complaint and possibly light a fire under someone to help me.  Guilt issues prevent me from standing up for what I need.  I feel like I'd be getting someone in trouble and that gives me a great deal of anxiety.  In my last posting I spoke about being the squeaky wheel but obviously I'm much more inclined to just give up and think to myself that I'm not worth the effort.  I'm having second thoughts at this point about going to CHEEERS and/or Art Awakenings.  I can't trust my case manager to complete the referrals needed and that calls into question all of the other logistics involved.  If I can't get in touch with them in a timely manner it makes me wonder about how reliable transportation would be since that it arranged through my clinic also.  What if I get stuck somewhere and cannot reach someone to help make sure I have a ride back home?  In my heart of hearts I know that being involved in something would be good for me but I've developed serious trust issues with the whole process to the point that I'm back to not wanting to leave home.  The past few days have been filled with negative thinking and ruminating on the problem without taking any action to resolve the situation.  I'll try to work up enough nerve to speak with a manager tomorrow but, given my track record of just giving up, I don't have a lot of confidence that I'll be able to do it.

Brian has been a Godsend.  We've decided to continue the trial period of being roommates and he plans to spend Thursdays through Sundays here with me.  It gives him respite from his less than desirable current living situation and having him here helps me a great deal in trying to put the brakes on the negative thinking.  We talk a lot about how we're doing and we encourage each other.  He prods me to start tackling tasks around the apartment and helps out with the things I have difficulty doing.  We're going to start going through unpacked boxes of clothes and create a donate pile for all the things I don't want or need anymore.  Once we have those things boxed up I'll be able to call someplace like St. Vincent De Paul to come pick everything up.  That will create a lot more usable space in the bedroom for Brian to be able to establish a more permanent presence.  I have so many clothes that I just don't wear anymore and am in desperate need of downsizing.  Ultimately our desire is to transition to a two bedroom place but my lease isn't up until October.  His current lease isn't up until June so for now we're sticking with the Thursday through Sunday arrangement.  While doing the one bedroom thing isn't ideal it's actually working quite well so far.  We get along so well and have many similar interests and tastes in TV, sports, movies and food and our personalities as very much alike in many ways.  It's nice to have someone who understands how this disease feels and manifests and can offer support in ways people without mental health issues couldn't.  Don't get me wrong; I have a wonderful support system consisting of family and friends who literally go above and beyond to help me.  It's just a little bit different having someone who walks in the same shoes if that makes any sense.  He's good at motivating me to do more little by little which is very helpful.  Having someone I'm also accountable to makes a big difference.  I can't get away with letting things go until they are overwhelming which, for me, is definite progress.  He's also being very supportive and encouraging when it comes to advocating for myself, though I haven't gotten there yet.  Maybe he'll help me work up the nerve to call my clinic on Thursday or Friday while he's here.  We shall see.

Case Manager Blues

One of my biggest areas of opportunity when it comes to personal growth and development is advocating for myself.  I find it very difficult to stand up for what I need which often leads to things not getting done and basically being forgotten about.  My current case manager is a great example of this.  He's a super nice guy and all but he operates on his own time and priorities.  Whenever he needs to get in touch with me it's important but when I need something it seems to routinely fall through the cracks.  I've been waiting three weeks now for referrals to be completed to CHEEERS and Art Awakenings and they still aren't done.  I've spoken to him numerous times now and have gotten conflicting stories each time as to where things stand.  I honestly believe that he just hasn't done what's needed to get things rolling.  During my last conversation with him he advised me he's taking another position and will no longer be my case manager.  If I interpreted things correctly he even admitted that he's just getting too old for the job and has a hard time keeping up with how they do things.  While I'm waiting for my new case manager to take over I remain in limbo regarding the referrals that need to be completed.  I need to get involved in some kind of structured activity so I don't allow myself to fall back into being isolated.  The Friendship program was wonderful but now that I've graduated I feel strongly that the programs available would be very beneficial for me.  Unfortunately I'm running up against a brick wall trying to do what's best for me.  I got spoiled for a while when I had an exceptional case manager that was on top of everything and was there whenever I needed or wanted something.  She gave me her direct line and email address to facilitate communication and I never had any issues getting in touch with her.  She was awesome at her job so it was no surprise that she moved on to bigger and better things in fairly short order.  As much as i don't want to, I've promised myself that if I don't hear back from my current case manager by tomorrow I'm going to have to call and speak with a supervisor to see if that will shake things up enough to get the wheels turning.  As anxious as I am about starting a new program I'm even more anxious about not progressing forward.  I guess this will be good practice for me to advocate for myself and take action since nothing appears to be getting done.  They say the squeaky wheel gets the grease; let's see how successful I am at being squeaky!

Roommates and Groups ... A Trial Run

It has been the consensus among some family and friends that I would benefit greatly from having a roommate.  This would not only be to share expenses, which is a definite side benefit on its own, but also to have the company and not be alone most of the time.  It is when I'm alone too much that I begin to spiral back into depression and my anxiety skyrockets, leading me to isolate and withdraw from life.  It is during these times that I have historically stopped taking care of myself which only makes things worse and I end up back in the hospital, usually for some medical issue like out of control diabetes but ultimately I also end up on the behavioural health unit to regain control of my deepened depression and heightened anxiety.  It has been through these hospital stays that I have been able to reset and start over.  I then get involved in some form of outpatient group that occupies my time for a while and does a lot of good, but unfortunately due to health insurance restrictions these groups are only for a limited duration and I end up back on my own with no clear direction or purpose.  This ongoing cycle needs to be broken and I need to address limiting my alone time and isolation on a more permanent basis.  I plan to address the issue in a couple of ways including getting into a roommate situation.  Fortunately I have a good friend that's interested and we've decided to give it a trial run to see how it goes.  Brian came over and spent the weekend just hanging out and it went well.  He's going to come again later in the week and spend a longer period of time here for our trial run.  I guess you can never really tell how things will go until you're well into a given situation but I think testing the waters will give an indication of what a more permanent arrangement will look like.  We have so much in common and relate very well with each other on so many levels.  He deals with depression, anxiety and agoraphobia just like I do but I don't anticipate that we would enable each other any more than we already do and just having the company, someone to be there, would reduce my sense of isolation.  We like the same things on TV and food wise so there would be minimal conflict there.  It's not completely ideal in my current digs because it's only a one bedroom place but I sleep on the couch so he will be utilizing the bed.  My lease isn't up until October I think and at that point we'd look at moving into a two bedroom apartment, possibly with two separate bathrooms, but that remains to be seen based on what we can afford.  I admit I wasn't thrilled about going into a roommate situation in general until Brian and I discussed it because I just couldn't see myself living with someone I didn't know well; that would only drive up my anxiety levels.  I've known Brian now for over a year and feel like our sharing a place is the best option for both of us.  I look forward to seeing how things grow and progress.

When it comes to groups, as I mentioned briefly in my last posting, now that I've graduation from Friendship I'm looking at two separate aftercare programs.  The first one is called CHEEERS, which is a peer run organization that offers all types of classes, groups, outings and training programs.  Classes and groups include things like health and wellness management, grief and loss, journaling, and art therapy to name a few.  They offer a number of different options for outings like going to a movie, visiting a museum or the zoo, and even participating in volunteering activities such as assisting at a food bank.  For those interested, and I think I am, they offer formal training in becoming a peer support counselor which leads to certification and offers opportunities to be peer support there at CHEEERS or even working at my clinic running a group or something like that.  I'm not sure how good I'd be at it but it's definitely something I'm seriously considering.  The other program I'm looking into is called Art Awakenings.  As it's name suggests its sole purpose is therapy through artistic expression.  They offer all types of classes in various mediums like drawing, paining, ceramics, glass work, and writing.  While I am definitely interested in drawing and painting, the writing program holds the most appeal for me.  I figure I could use any help I can get when it comes to my writing.  If I do become involved there my hope is that improvement in my skills will be evident in my postings as well as any creative writing projects I might delve into.  Art Awakenings has a studio and gallery in the Roosevelt arts district downtown where participants can display and even sell their work.  My sister has been there during one of Phoenix's First Friday art walks, met some of the artists and even bought a couple things.  She raved about how nice it is and what a great program it seems to be so I'm excited for the possibilities.  My only concern is transportation.  That is arranged through my clinic and they basically use a cab company for rides to and from the programs.  The company currently being used is not the most reliable and is known for cancelling reservations with little to no notice.  For me not having dependable transportation leaves me feeling very anxious and apprehensive.  The last thing I want to do is get somewhere and not be able to get home.  I know participants do it every day so my fears are probably overblown, but I've had rides to and from my clinic cancelled without warning and for no reason and have been left hanging for up to three hours on one occasion; so I've had personal first hand bad experiences.  That aside, I'm excited about the opportunities I have for groups and for my living situation.  Things are looking much more positive and between the various programs and having a roommate I should be able to curb the possibility of becoming isolated and ending up once again back where I started.  Time will tell but I really think things are looking up!

The Long Journey ... Two Steps Forward One Step Back

It has been a long time since I've posted anything so I thought it was about time I got off my ass and did something about it.  When last we spoke I was preparing for major surgery and dealing with the anxiety that accompanied that process.  Surgery went well and I ended up with quadruple bypass grafts.  I have no memory of anything beyond the pre-surgical prep area thanks to the wonders of modern chemistry.  I remember loosely saying goodbye to those who were with me and the next thing I knew I woke up in intensive care not long after having my breathing tube removed.  I'm thankful I don't have any lucid recollection of that experience.  My worst fear was that I'd wake up intubated and go immediately into panic mode.  Luckily I was kept well sedated and chemically altered throughout that process.  I was forced to sit up on the side of the bed shortly after waking up and, as you can probably imagine, that was not a pleasant thing to do.  Just having had my chest cracked open and subsequently wired and sewn shut made it very difficult to say the least, even though it was a necessary evil.  I was soon sitting up in the chair and within 24 hours was walking the halls of the ICU, lugging my IV's and catheter bag along with me.  I remember being exceptionally short of breath with any exertion at all and I had to focus on trying to keep that in check.  I was reminded by the wonderful nurses who cared for me that it was normal since basically the anatomy within my chest cavity was rearranged during the operation.  48 hours later I was transferred to the cardiac step down unit where my recovery continued at what seemed like a rapid pace.  Each walk became longer in distance and duration and the various IV lines, chest tubes and foley catheter were gradually removed one at a time lessening the attachments that needed to be lugged around.  All in all my pain was well controlled and the care I received was beyond any expectation I could have had.  I was in the hospital for a week and then I transferred to an inpatient rehabilitation facility where physical and occupational therapy commenced.  I spent an additional week or so there and gradually progressed as far as what I was physically able to tolerate.  My breathing improved and my stamina started to grow, albeit not as fast as I would have liked; but in all honesty I probably didn't push myself as hard as I could have.  Overall the facility was nice though the food was less than stellar.  Maybe it was just my appetite but I was glad to get some real food once I was discharged.  My sister and her husband graciously accepted me into their home for another week or so as I no longer met inpatient criteria but could not yet be on my own either.  I still needed help getting around, bathing and such and they did their best to keep me comfortable as my recuperation continued.  I also had regular visits by a home health nurse and physical therapist.  As much as I appreciated my family's hospitality I have to admit I was really glad to get back home in my own surroundings.  Family and friends continued to assist me with chores and made themselves available to just be on hand when I bathed in case I got into trouble of some sort.  I gradually got better and was able to make it to follow up appointments and do a little bit more each day.  I have to say I couldn't have made it through the entire process without my friends and family.  I don't know what I would have done had I been forced to go through this on my own.

The down side to being back home was that I allowed depression and anxiety to grow and fester to the point that I once again felt hopeless and worthless and basically quit taking care of myself.  I quit taking my insulin and let my blood sugar get ridiculously out of control.  Even though I had just been through such a miraculous life saving procedure I got to the point that I wanted to just die and get it over with.  They say that depression is common after such a major surgery and I guess I should have heeded the warnings and not let things get to the point they did, but the time came that I was confronted by one of my closest friends and basically told that I needed to seek help again by going to the hospital.  I didn't want to go; I'd been there so many times before and knew the routine and I just didn't feel like it would help, but I reluctantly capitulated and allowed myself to be taken to the emergency room.  It wasn't very surprising to me that my blood sugar was exceptionally high, more than 550 for those who are familiar with blood sugar readings.  I was on the verge of going into diabetic ketoacidosis or DKA as they call it.  I was admitted to the medical floor and was monitored closely for several days as they brought my sugar levels down to a more reasonable range.  During this time I was evaluated by the behavioral health folks and it was determined that I needed to be transferred to that unit once I was deemed stable.  I spent another week there working on my depression and anxiety levels and having some of my medications tweaked.  Part of my aftercare plan included participating in a partial hospitalization day program at a place called Friendship Community Mental Health Center.  I'm now completing my seventh week of the program and graduate tomorrow.  The program is a bit like attending college and has included classes on life management, coping skills, grief and loss, and trauma.  They also provide transportation, breakfast and lunch.  This program has been the primary focus for me over the past seven weeks, getting up at 5:00am every day and riding the van into South Phoenix where their facility is.  The therapists and other staff there has been outstanding and I've certainly learned a lot.  Having a place to go and sense of purpose on a daily basis has been good for me and I plan on continuing to get involved in a couple aftercare programs.  CHEEERS is one program that provides daily groups and activities and offers training on becoming a certified peer support counselor.  I may pursue that as it would prepare me to have a way to help others going through similar circumstances.  The other program I'm planning on exploring is Art Awakenings.  As its name implies they offer classes in all types of art like drawing, painting, glass work, sculpture, and even writing which holds a great deal of interest for me.  They have a gallery in the downtown Phoenix arts district where works are displayed and sold to the public so perhaps one day I'll be able to sell my work.  Either way, these two programs hold the promise of keeping me engaged socially and helping me to not isolate and spend too much time alone closed up in my apartment.

On that note one of my challenges has been living alone and having the tendency to isolate and be on my own too much which has historically led to spiralling downward back into depression and significant agoraphobic behavior.  I have been in discussions with a friend of mine who shares many of the same circumstances and we are talking about becoming roommates.  We feel it would be good for both of us to support one another and be less isolated and alone.  We share so much in common well beyond our mental health issues.  We both love sports, old movies on Turner Classic Movies, good food and hanging out just to name a few things.  He's going to come next week and stay a few days as a trial run to see if it would work.  I'm currently in a one bedroom apartment so we'd need to find a two bedroom two bath place, perhaps in the same complex, once my lease is up.  Will see how things go with that but I anticipate it will be a great situation once we find the right place that's affordable and meets our needs.  Another challenge I'm facing that is a major steps backward is that I unfortunately started smoking again.  I can't believe after all I've been through that I picked up that habit again but I did.  This has been a source of major disappointment for my friends and family and I feel a great deal of shame and guilt for having started yet again.  All my efforts at quitting have failed to date and sometimes I wonder if I'm just destined to be a lifelong smoker even knowing that it very well may kill me.  I can't explain it other than to say that the addiction has just been too strong.  I had quit a month prior to surgery and stayed quit for a couple months afterward but I missed it so much that I broke down and bought a pack.  That led to another ... and another ... and another; I was soon back to getting cartons rather than one or two packs at a time.  I'm incredibly embarrassed and disappointed in myself and I know others can't believe I would do such a thing.  I've been up front and honest with my primary care physician and cardiologist, both of whom want me to work on quitting again of course.  Smoking can lead to reducing the lifespan of the coronary artery bypass grafts which could lead me back to the operating room sooner rather than later.  I consciously know all the many reasons for quitting and staying quit but I'm honestly just not there yet.  Perhaps having a roommate will allow me to focus more on quitting.  He's a smoker too so maybe we can quit together which might make it easier being accountable to someone else; we'll see how it goes.  Well folks, that's pretty much a summary of what's been going on with me.  Between feeling better and perhaps getting involved in a writing class at Art Awakenings I do plan to start posting on a more regular basis.  These past few months have kept me from doing so but I want to write more consistently.  As they say ... more to follow!