Monday, October 17, 2011

The Story about when I'm going to have a Nervous Breakdown...

*Warning, this was written & published without time for me to change my mind, as I usually do with posts that are this emotionally raw. I said I wanted to give a more honest look at how it was to live with a chronic illness & chronic pain, so here it is: painfully, honestly, raw. I'm not suicidal & not even close to being so, except for about 15 minutes every time the situation below happens :-) which I hope will be somewhat re-assuring to you.

It's late at night, the time when the anxiety I really want my brain to forget about comes to the forefront & won't let go. It's the time when I know if I don't stop thinking about this crap now then I should forget going to bed because the memory of the bad dreams & even more debilitating anxiety I'll feel in the morning won't be worth it.

Before I became really sick I really could control any bad or worrisome thoughts & always move into a happy place before going to sleep. Sometimes I'm almost 100% positive that this current lack of control is part of the disease that's taken over my body. That scares me even more, if this can happen so can many of the other psychological issues they say can happen. My brain has already been affected in ways both Eric & I have been aware of for quite some time. I'm aware of some other, newer things that are hard to convince him or anyone else is happening now although I can feel it.

So my question becomes, at what point does what I know & can feel matter the most? When is it this expertise that grants me the right to determine certain options for my health care, when I not only feel how I feel but have come to know more about my illnesses than most of my Dr.'s do?

And what I think "mattering" is at the heart of what torments me right now. You see, getting sick goes something like this:
  1. You start to realize you're sick & seek a Dr.'s help
  2. What's wrong doesn't immediately jump out so the Dr starts ordering tests & referring you to specialists
  3. You start getting placed on meds for long term & short term issues
  4. You have to start seeing certain Dr.s & specialists on a regular basis because of all of the meds you are now on
  5. You find yourself sobbing on the bathroom floor because you've just realized you've given away certain rights & parts of your life to people who don't care about you after 4pm on a Friday or when they decide to take a few days off without updating your meds first. This is also the time you realize you're sick & you'll spend the REST OF YOUR LIFE relying on other people and that means that your plans are no longer dictated by how you feel but also whether or not the Dr took care of the meds you needed to get by. And then there's the worst part of it all, this is also the time you find out that your Dr will make decisions about your plan for treatment without your input or even telling you him/herself. Instead the Dr will make a decision & write it in your note which some office person will read to you & there is not anyone but the Dr who will be able to change that decision!
Number 5 is for me, the worst place I have ever been in my life & the problem is, I've been there more times than I can count. Every time I've been at number 5 another chunk of pride, sanity, optimism & sense of well being has been ripped from me. Every time I've become more depressed, anxious, hopeless and scared. Every time I've lost more of my will to fight them & even to live.

This past Thursday & Friday I went through another ordeal of the "they have control over you" with an added bonus of the Office Manager treating me with disdain, disrespect & outright lying to me from one sentence to the next like I couldn't possibly be intelligent enough to realize it. Eric had to take over & finally got the Dr on the phone after over an hour of us trying. By then I had run away & was trying to breathe & come up with a plan to get MY LIFE BACK! This was another example of the Dr making a decision without talking with me but made worse by a staff that was hellbent on preventing me from talking to him & getting an opportunity to share in decisions about my plan of care.

So here I am, knowing I should go to bed but filled with the anxiety of being treated so insignificantly when I already feel so insignificant. I'm not who I was a few years ago when I could've said, "now just what do you think you're doing." to the Office Manager & then promptly put her in her place & made her realize how out of line she was. No, I'm filled with anxiety because I am running out of Dr.s to work with since so many operate this way & running out of time to find the ones I need that will truly help me. Filled with pain that never ceases, wondering how I'm going to keep going on when it seems like so many of the problems I face come from the very people I have to rely on to help me.

Those are my two MUSTS & honestly, I won't live without them.  It's rather pathetic really, with my quality of life already so low, that I have to fight for anything to survive. It's so stupid I'd laugh if I could stop crying.

So, since I have to be here for my family the fight for those things continues & I'll keep doing my homework on patient's rights & accessing help where I can. But in the meantime I need to find a funny joke or some diversion so I can go to sleep tonight instead of twist in a relentless stream of dreams that remind me I'm sick, I'm at someone else's mercy, someone who doesn't know what my life is like nor has he apparently listened to much of what I've said in the past two months, and that I'm of such low value the Manager of the Dr.'s office can actually get away with demeaning me & scolding me like a child.

It'll be hard (I write as tears stream down my cheeks) but I'll look for a way because for now I can't stop fighting. The single hardest thing about a chronic illness with pain, besides the pain, is this. I'll do my best to get through tonight but I know eventually, it's this treatment from Dr.s that will send me spiraling into a nervous breakdown. It nearly has already, a few times. I guess I should admit that I hope that I spiral into a nervous breakdown, because as the chunks of my soul are ripped away, so are my reasons for fighting to live with this shoddy quality of life at all and a breakdown is actually the better choice for my family.

Monday, August 8, 2011

and the Blog Goes On...

Recently a friend on Facebook was also friends with a relative, which I didn't realize when I accepted her friend request. She's someone I trusted, have been friends with on a knitting site for quite some time & knit with regularly on Thursday nights in a knitting group. Although the link to my blog is only open to friends, this person chose to provide members of my family of origin (FOO) with a link to my blog. I'm still not sure how this person felt this was an okay thing to do but it really doesn't matter in the end. Eventually someone in my family would've stumbled upon it & the reaction would've been the same.


I first realized that my FOO had access to my blog after receiving a very sarcastic, angry email from my father who felt that my last post painted him as an abuser. He has a point since he isn't an abuser, at least I didn't think of him as that when I wrote the post. I wrote of an incident where he was verbally abusive to my children, but did not specify it was an isolated case as I should have. I think even more confusing is the fact that I have spoken about being abused so naturally he might've felt people would think it had been him when it actually wasn't.


At first I admit I was angry, angry at the way my father handled it, angry that someone had given personal information, angry even at what that person may have been told about me so that she'd feel better about breaking my confidentiality. After the initial anger though came the sadness & realization that I had a decision to make. I had made the decision to bare all on a blog long ago and even discussed it with my therapist, naming singer/songwriters I greatly admire for writing songs about their personal lives. Trust me, if I could write songs & sing then my songs would be about what I know, my life. Instead, I can write & a blog was a great outlet for me. The question now is do I keep going on this blog knowing my FOO has access to it or do I create a new blog & start over. You can only imagine how appealing starting over would be!


So, I sought the advice of a few people & truly the best advice I got was from a great friend who reminded me that this blog was started as a way to help me & if I found myself changing how I wrote or even writing with an intent to hurt/get revenge on members of my FOO then it would be better to start over. Others offered me the much needed advice to keep going in a blog because "I have done nothing wrong" except in the eyes of my FOO for breaking the unspoken rule of sharing secrets that never were to be told.


Ultimately I've decided to continue with this blog. So far its been a truthful picture of the path my life has taken since I realized life as I knew it was changing. Having a physical illness requires introspection into all parts of one's life including mental health. I'm reminded monthly by my primary Doctor that people who aren't supporting me in a mentally healthy way are not good for my physical health & they need to be cut from my life. It reaffirms my decision to break away from my brother & sister was a good one. But, it causes me untold sorrow & grief as I decide what to do about my father, who even after all these years still believes he might get his way if he gives me the cold shoulder when he's "disappointed" with me. The incident with my children was a harsh wake up call that even if he can't get to me, he subconsciously could take his anger out on them because they are extensions of me.


As for my childhood abuser, it was my older brother. I don't know when it began but I do know that he sexually abused me from as early as I can remember until the time I was 12. After that came the emotional, physical, & verbal abuse. He was very successful at grinding my self-esteem into the ground and making me hate myself. I hated how I spoke, looked, acted, felt uneasy around other people & generally unsafe. Unfortunately, just identifying the person who abused me & the type of abuse leaves out years of subsequent trauma & the re-learning of how to feel comfortable about myself around other people. I realized many months ago that I must've been suffering from PTSD for years but more recently realized I was probably even suffering from it as a child. All of that takes time to explain and help others understand the magnitude of the work that has to be done to become not only a survivor, but a healthy survivor living within the spectrum of what many consider "normal", with healthy relationships not only with others but myself. Since my illness & the vulnerability that caused its been difficult to get back to & even get better at loving myself again.


One thing is for sure, while my family remains unhappy with my openness about this, I do not feel any shame or guilt. I wonder if its their own shame & guilt that makes my openness so upsetting?

Wednesday, July 20, 2011

It's MY Story

Too much time has gone by, largely because I set myself up to do more & write more than I can and when I don't get it done, the blog post goes unposted. I'm learning, but I feel like sometimes I'm learning too slowly and then gosh darnit I forget what I've learned! Now I've set a goal to be more aware of what I CAN do and to just be okay with doing that much. So what if I can't say everything I want in my post, at least I said something and that will definitely feel better than not posting at all.
Life these days is in no way close to how I imagined it would be, even after I left my job & knew I'd be home. Finding a new "norm" for life was supposed to happen about a month after I left my job & then things would settle down. I even believed that without the stress of working that my health issues would stabilize & I'd find myself at least helping more around the house, cooking, cleaning...nope.

My health is still like a crazy roller coaster ride & I'm still trying to figure out what makes it worse, what makes it better. I'm still fairly clueless. Although, I have to begrudgelingly admit that emotional stress does have a very negative impact on me, but I only recognized this about a month ago. After a bad, very emotional scene with my father verbally abusing my children as Eric threw the van into reverse, speeding away & out of earshot as quickly as possible. The van where I sat in slack jawed disbelief, unable to even turn my head & look at the 3 children in their seats behind me, cataloguing away in their brains a moment & words that will never leave them. I can get into that in detail in the future, but for now I just want to acknowledge the toll that brief moment in time took on my health. It was as though I was watching a movie in slow motion & the sequence of events were perfectly timed. Two days of crying & blowing my nose led to me getting congested & a slight cough on days 3 & 4 so that by days 5 & 6 I had a cold the likes of which I've never seen before. It's been a month & I'm finally getting better but I'll always wonder if I didn't suffer from my 1st case of pneumonia.

Being sick for the past month & the reason why is definitely setting the tone for this post, which I recognize is much more pessimistic, sadder than how I usually post. I try to be positive & look for the silver lining & I'm pretty sure being in that "okay" place was what gave me the strength to take a hard look at & experience the painful emotions that I need to in order to accept things from my childhood. Yes, I've mentioned before things weren't great but to really be truthful, I believe I suffer from PTSD & my illness has allowed me to recognize better not only that this was happening to me but also what some of my triggers are. Why PTSD? It's a long story that I know I couldn't possibly tell right now but the difficulties I endured as a child spanned years (into adulthood) and included all the makings of a classic V.C. Andrews novel. How's that for holding you in suspense?

It was only recently when I realized that although this is the story of my life, I'm allowed to tell it. It has been a hushed thing for so long & of course the guilt trip that I'm trying to hurt other people, specifically my parents has been dangled over my head by none other than my abuser. He knows my weaknesses & that I don't want to hurt anyone, unfortunately what's best for me may end up hurting other people. This is MY STORY, what happened to me. I have every intention of telling my story even if I can only do it 2 paragraphs at a time.

For now I at least feel like I've opened the door to blogging again & most importantly shown the sad side of me, which I normally keep well hidden. The happier side hasn't gone away, its just taking a break as I work through the latest of PTSD triggers & what it all means. I'm glad that I have friends who are deeply supportive & can be there for me as I work through this dark stuff. Thank you all for being just who you are!!

P.S. I think it's going to rain, I just killed the BIGgest spider who had the audacity to be walking on my couch. I'm so glad it didn't touch me & that I didn't scream :-)

Sunday, January 16, 2011

No Regrets or Baggage to Bring to My Funeral?

Do you have any regrets? Are you living for today or thinking about the past?
I often think about what I want to write about each day on the blog but usually don't get to the part where I actually do the writing. When I had my first blog that used to bother me because I felt like I had so much to say (and oh yes, it was SO important) that I never got around to posting and that no one would follow my blog if there were large spans of time between posts.

The truth is, I probably don't have all that much important information to pass along and this blog meets my needs more than it meets anyone else's, so I'm not worrying so much about the days between posts. Obviously I would be ecstatic if people started reading every post, sharing it with others and best of all, learning something new from each post. I can pretty much guarantee that you won't take away some profound new idea or lesson from all of my posts but I will definitely try because after all, I did start this blog to help share the stark realities that come with living with a chronic illness and pain to the world.

I do want to say Thank you to the many of you who either commented, sent me private messages and emails, and even told others about the blog. I was taken aback by the number of you who read the last post and responded with support and even shared some of your own personal stories. As a start, that was a remarkable beginning towards reaching the personal goals I was hoping to achieve through this blog.

So, what's been on my mind lately? How about "regrets". It's a question that I ask myself over and over again, "If you died tomorrow, would you have regrets?". Then it goes beyond just the question into action because why bother asking if I'm not going to at least try to settle something that needs settling. Most people don't spend their time asking themselves this question because most people are thinking about death being so far off that they'll be living an entirely different life when they come face to face with it. And most of them are right. I don't think that I'll be touring the country in a Winnebago with my husband after he retires as I had originally desired so I have to push those thoughts away for the moment. What I read and understand is that my life, even without an illness but just the chronic pain will most likely be significantly cut shorter. When you add in the yet unknown but questionably known illness then it's pretty clear I better start working now to make sure I've lived the life I wanted and have no regrets. In the end, I could live to be 80 and the worst that could happen is that I lived a life of few regrets, including a few years in a Winnebago!

The most important thing for me is how my children would remember me. I want to be remembered by them like I remember my grandmother, who died when I was 8. Perhaps she wasn't the angelic, ethereal person that I remember because I was so young when she died I couldn't be the most reliable source, but perhaps she really was. All I know was that it was and is extremely difficult to maintain that quality and really the only way to do it is to be relatively calm and at peace with life. That's how I can get away with it now but couldn't when I was trying to work and get them all where they needed to be while battling a progressive illness. By learning about Buddhism and Mindfulness, along with meditating I've been able to achieve a more calming happy presence around my children. Hopefully at some point I can carry the calm, ethereal nature that I know is there somewhere in my soul, out into the world to be shared with others. For now, I am extremely happy that my children look at me and tell me they love me, that they know I love them above all else and that there is nothing off limits for us to talk about or that can interfere with that unconditional love. No, if I died tomorrow I'd have no regrets with my children because they would remember the kind, nurturing, ever present love I offered.

I don't have a "Bucket List" and doubt I'll ever have one. If I did, it would probably be to have a tropical week long honeymoon with my husband, especially since we didn't have much of a real honeymoon. There's an organization locally called The Sister's Wish that helps women in my situation but unfortunately, I'm too old to get help at getting my one wish granted. Instead I tend to take life one day at a time so when it comes to things I would've liked to have accomplished before I die it's pretty simple. I do regret that my illness has caused our family to become deeper and deeper in debt but since it's out of my control at this very moment I have to let go. There are a few things that are long term goals that I can achieve without money or other things beyond my grasp. My favorite is a book I've been using to record information about my life that my children can later read and hold onto. I don't actually write in the book, which is called "All About Me" by Philipp Keel, but I go through it's set up of questions for me to answer, write them on paper and plan to transfer them to the computer someday. The book is set up for anyone to go through and answer questions about themselves. In the beginning it's more factual based things such as parent's names, siblings, etc but as you get further into it the questions demand more reflection and thought. I would even recommend it to someone who feels like they want to do some self reflection but doesn't quite know how to start. It listed a website for Philipp Keel that is currently under construction and refers to another website instead http://www.simplediary.com/ that has journal type books different than mine but also some interesting videos and thoughts about being a panda for a while. If being a Panda for a while or a day is intriguing then you should definitely check out this website, just make sure you let me know what you think.

Now, as for past regrets or unfinished business, with Eric's (hubby) help I've come to embrace that some big things can't be fixed. For instance, that I wasn't able to get long term disability insurance so my illness has drastically affected our financial situation. Some of the other discoveries I've made as I've reflected on this question have really surprised me. The most stunning is my regret that I stayed at my previous job for so long with a boss who clearly set off triggers in me. I believe she actually hastened, if not actually caused the decline in my pituitary gland that led to my adrenal insufficiency and low thyroid. To be clear, I'm in no way saying that my illness is psychologically based. What I'm saying is that my autonomic system doesn't work properly, causing my body to over and under react to situations disproportionately and in this case, it seemed to be constantly over reacting, even when I wasn't at work but thought about it or my boss. When we feel threatened our fight or flight instincts kick in, along with different chemicals started in the pituitary gland. My body was operating like it was in a constant threatened mode (aka high stress) and that may have eventually burned out my ability to produce the right level of chemicals at the correct times of day.

Now, this is just a theory and I can't be sure, but I do know I regret staying because even if it had nothing to do with my pituitary gland, it definitely wasn't a healthy environment, in fact, it was downright dysfunctional. The reason I'm sharing this is not to get even with my boss or anything like that, it's to give a heads up to anyone reading this post to look closely at what you're doing. Is your work environment healthy both physically and mentally? Have you had your thyroid tested and found the levels are either too high or too low? Do you feel anxiety on a regular basis, especially when you are starting your work day? Is there a particular person, especially one with authority over you that sets off the anxiety or perhaps reminds you negatively of someone else (perhaps this person has characteristics of someone who abused you when you were a child). I am simply suggesting that you think about different scenarios in your life and decide whether they are healthy.

Although there are those few things I regret, I do not hang onto them. What good would that do? I don't have time to live in the past unless it's to joyfully remember a good or funny time. I don't have lingering anger towards anyone or want revenge. I have a dear friend who also suffers from chronic pain and has some medical issues. Every time we are together or talk on the phone, she talks about this particular incident that happened to her home and things when she allowed someone to live there for free. Trust me, her story is pretty traumatic and even led to the divorce between her and her husband. Now, years later she and her husband are together again but no longer married. My concern is that her inability to let go of the past may cause her to lose the man she loves once more. When I told her this she told me it was closer to happening than I'd even realized. I have no desire to tell anyone what to do with their lives but as an outsider watching a train wreck about  to happen, it's a pretty awful feeling. There's a limit to what I can do to help because of my illness and I need to stay well but this friend doesn't seem to know how to get back on track. I've given her lots of advice because she's asked for it but I think if I could get her to listen and follow through on one thing it would be to let go of what happened. At some point I can't even stand to hear the story again so it's no wonder that her repeating the story inside her head constantly is driving her crazy. That's the problem. The people who victimized her aren't hurting right now, at least not about this situation, but she certainly is. And the main person at fault is a relative of her boyfriend/ex-husband so although he was also victimized, she's often taking some of her anger out on him, knowing it's wrong but not knowing how to stop. She's only hurting herself in all of this and if she keeps it up, she'll lose even more. She needs to dissect the feelings of anger, victimization and loss she has around this issue, learn from it and then move on and she needs to do it more quickly than I had even realized.

I hope that message resonated with her and anyone else who is being held back by past events. There are ways to get help or even to make certain changes so that tomorrow doesn't become another day you are held hostage by your own anger, desire for revenge, or victimization. Anger is okay, anger is good, and then a time comes when that anger subsides and peace needs to takes it's place. As some of you know, I don't have a relationship at all with my brother or sister even though they both live fairly close. I bring it up because some people probably think that this is an area where I would have some unfinished business I wanted to take care of, but it's not. Sometimes by the time you let go you realize you might have waited too long. That's probably the case here since ending a relationship with them was too easy and liberating. It felt too good instead of bad. It didn't come with anger, instead it helped me let go of the anger I'd been holding onto. I refuse to let the past hold me back and that includes unfair judgments and treatment. Sometimes "simple" can be very difficult to find your way to.

If I die tomorrow, my husband and children will know who I truly was. My previous coworkers and even some knitting buddies will remember me for my sense of humor. In fact, my previous coworkers may fondly recall my made up games to help the morale of Supervisors and Managers and also kept us close even though years before the two groups frequently butted heads. My extended family would probably be surprised at how the friends I have describe me, much to their loss. But I will know I tried to show them who I was and that was all I could do. And finally, many many people will remember how I helped them, how hard I worked and fought for integrity and that doing the right thing always was more important than anything else.

Now, I'm not likely to die tomorrow and neither are you. But do you have any unfinished business to take care of just in case?...Any regrets that can be resolved?


Sunday, January 2, 2011

A Resolution to Resolve in 2011

Each year I say my resolution is not to resolve. This year I plan to resolve A LOT! I'm starting a new blog, planning to do some advocacy around chronic pain and most importantly, find my reason for living and begin to enjoy life again.

First off, here's the NEW BLOG! I decided to completely start over because when I started my first blog it really was mostly about knitting and times have really changed since then. I miss the time when what I was knitting was one of the the most important things in my life, but I can't go back. Rather than continue with that blog I decided to completely start over, as I've been doing in life. This new blog has been a work in progress for a while now but I finally needed to just simplify things and get it started. The start of a new year seemed like a good time to just bust it out. It'll look more polished as time goes on and eventually will include video.

It was exactly this week a year ago (the week between Christmas and New Year's) when after taking quite a bit of time off from work I returned to see if I could make it work. I was out of FMLA and it was do or die time. I knew some people thought I was crazy to even attempt it but I was determined that I had to make one last ditch effort before I was finally willing to accept my illness just wouldn't allow me to work. I tried for a couple of weeks but clearly wasn't making it. Even so, I remember how happy I was to go back to work and how I was singing at night when I'd get home, well for the first 2 days anyway :)

When I left my job, I was thrust into a different role that I really knew was coming for a long time but that I didn't know how to handle. Most of my identity was tied up into who I was professionally and I couldn't even imagine telling people I didn't work! It took a very long time for me to realize that part of my new life included a job, to be a stay at home mom and with that came some responsibilities I could feel proud of. For the most part however, I felt and still feel like I don't add much of an impact on the world and more importantly, in my family. Much of this feeling in addition to a dependency on Doctors for help when I was used to being independent is what caused a deep depression to slowly sneak its way in deeper and deeper so that I am where I am today, very fragile.

Over the past year I've seen the progression of my pain and had more and more difficulty getting help for it. My vision of being jobless for a couple of months, regaining some strength and then establishing a bit of a routine that included housework and cooking never came to light. Instead, my days are spent in the hot tub, going to appointments and napping. I can't even say off the top of my head how many doctors I have. I just know there were times I'd average 3-4 appts a week when I was doing physical therapy too. Also, not one to usually look for pity, I realized that without a recognizable horrible disease attached to my illness, it's been difficult to get much support and understanding. If nothing else, Eric (hubby) and I have learned how to reach out for help in ways we aren't used to. It's difficult for people to imagine pain so extreme that you cannot use the stairs or walk without a cane, I guess, unless they've been there themselves or watched a loved one go through it.

So, to be upfront about why a new blog, in addition to the above mentioned ones. I'm using this blog as a voice to help people understand chronic illness and pain, I'm also sharing my experiences so that other people going through similar experiences can find a similar voice and know they aren't alone. There are times this blog will be tough to read, the videos even harder to watch. That's the reality that up until now I've been able to hide behind closed doors. Yes, I have a great sense of humor, I love sarcasm, and I think laughing is the best therapy. However, I can and have been in such great physical and/or emotional pain that humor and lightness were impossible for me to see. The truth is, the past 2 weeks have been the worst, but the really troubling time started around the beginning of November. I've almost gone to the hospital several times for help with an emotional breakdown I was having. I did go to the ER a few days ago after I fell and was out of pain meds. I've found that unless I'm going to harm myself there is nothing they'll do, not even try to sedate me enough to be calm. Instead I've been told that I can't get hurt falling off a couch and was offered a bed in a detox facility (Remind me to tell that story later, wish I had taken pics of my swollen arm...). There is so much stigma that comes with using pain meds and it's even worse when you say they aren't working.
It's dealing with these types of issues that have left me lying on the bathroom floor bawling because I have nowhere else to go and it's amazing how little some Doctors can care. Pain has a way of breaking you down. I know the tools and tricks of the trade that are supposed to make it easier. There's meditation, mindfulness, taking life day by day, focusing on the positive things, the list goes on and on. I've done that, bought CD's to listen to, done physical therapy, cut my hair to help lessen the weight on my neck, sat in the hot tub for hours, sat under a heated blanket when I'm not in the hot tub...but still pain has a way of overriding all of that and taking over your consciousness. This is where I am, on the verge. Yesterday and today were better days. I have lots of hope for tomorrow and after that I'll take it day by day. Thank you for taking the time to read this and I hope you'll keep reading!