Daily Archives: September 4, 2014

Feces Eventuates

That’s the fancy way of saying “Shit happens”. Will and I got the news today that he will have to be on blood-thinning medications for the rest of his life, which will mean frequent blood testing and monitoring for subtle signs of internal bleeding. The poor man already looks like he’s been beaten half to death, thanks to the shots I’ve been giving him twice a day and the blood work he had done the other day, and we still don’t have him up to therapeutic levels. But there are millions of people on anticoagulation therapy who live normal lives, and Will can too…..if anything, this may extend his life even further.

We got good news, too. The tumors have shrunk markedly, and his liver is both smaller and softer than it was. In fact, he’s in good enough shape that he won’t have to go back to the oncologist for three months—not that we don’t love Dr. Wonderful, but this means Will is stable and there are no acute issues as far as the cancer is concerned. This is the Holy Grail, the day we never thought would come when we first started this journey a little over a year ago. Back then, nobody thought he’d survive longer than a few weeks or months…..and yet here he is 14 months later, as hale and hearty as anyone with stage IV cancer can possibly be. God is great, and modern medicine ain’t too shabby either.

All of this has made me look at life with a new appreciation. I still have occasional thoughts of not wanting to be here, especially when I consider our current circumstances and the likelihood that things will get worse before they get better. But then I look at Will, who is literally fighting for his life, and I feel ashamed for wishing sometimes that I could let go of mine. He’s made it clear that he’s putting up with all the poking and prodding and medication side effects because he wants to be around for me and the kids; I owe it to him to stay by his side.

Shit happens. Life goes along day by day, and sometimes it’s full of blessings and sometimes it’s loaded with tons of, well, shit. Lately it’s been mostly the latter, but even in the midst of this steaming pile there are things of beauty to be found. Like Will’s smile and his huge, work-hardened hands holding mine as gently as they might hold a butterfly. Like the security of a long marriage which has survived through even tougher times than these. Our world may be falling down around us, but there is a peace in our hearts that all the hardships in the universe can’t touch.

Aw, geez, I’m getting all sentimental and I didn’t mean to write about mushy stuff. The post I’d been planning to write was about this ongoing mild mixed episode and how ridiculous it is to want a rip-roaring blast of mania, just to get it out of my system (and it IS there, simmering under the protective layer of medications and begging to be released). But as it is with most writers, sometimes my posts write themselves completely without permission from my conscious mind, and what comes out is what actually needs to be said.

So I think I’ll just leave this entry the way it is and write the other post on another day. After all…..feces eventuates!

 


Hair Done, Anxiety Didn’t Win!

I got my hair done and I love the way it looks this picture doesn’t show just how vibrant the red is sadly, I’ll need to take another outside 

 I’m happy I went through with it. I talked to my therapist which eased some of my stress but my shrink had to cancel due to a family emergency so it will be a week before I can deal with the pills. What’s one more week right. Just gotta keep my eye on the prize and keep moving forward. Can’t be negative all the time.

New hairdo, color


You’re Just Like Me: John Doe

So, you have a Mental Illness?…Which One?

Bipolar 2, Complex PTSD

When you were diagnosed, what age where you? Where were you in your life?

The PTSD diagnosis happened when I was 20-ish, it altered to CPTSD about two decades later. Bipolar was diagnosed recently (mid 40s). Where was I? I’ve never been stable for long (geographically even), but I’m standing still now.

How do you cope/relax from your mental illness?

Strict medication compliance and very lovely and loving dogs. Taking things a day, hour, minute at a time.

What are 3 words that you would describe how your illness makes you feel?

I don’t know.

If you could talk to world leaders about mental illness, what would be the one thing you discuss?

Erasing words like ‘madness’ from any discussion of it. Maybe even a new word for mental. There’s enough genetic research and science around for the current stigma to be utterly unacceptable bullshit. Grrr!

What is some advice you would give someone who is fighting mental illness?

Take your meds!

How can we keep in touch with you? (blog, Facebook, Twitter)

Http://bipolardyke.wordpress.com


Filed under: Uncategorized

Thank you, Kate and Tempest

Thanks, but no thanks. This is an Award-free blog.

Yesterday I received two awards which I am not accepting. Thank you Kate of FlippyZipFlop.wordpress.com and Tempest Rose of NonsenseShenanigans.com for nominating me. I really do appreciate their support, both in nominating me and in being a part of the mutually supportive mental health blogosphere. Together we help each other, together we educate others, and together we fight stigma. Go check them out, you will not regret it.

Kate of FlippyZipFlop awarded me the Liebster Award, “Because she’s [me!] ALWAYS got something sweet to say.” Thank you, Kate! I love the beginning of Kate’s blog tag line: “I tried being normal and didn’t like it one bit.” Her banner graphic is four hearts with the words: love, peace, hope, dream. Enough said, really, but I’ll say more. She is the single mother of an 11-year-old boy whom she adores. She loves to write, practices Buddhism daily, and loves a very private man (as do I, but it’s a secret).

Kate of FlippyZipFlop then went and nominated Tempest Rose of Nonsense & Shenanigans for the Angel Award for inspiring us 1 blog at a time. Tempest turned around and nominated me for the Angel Award knowing full well that I no longer accept awards. Yesterday was a busy day for Tempest. I lost count of how many awards she accepted and paid forward. It made me dizzy. Tempest keeps me engaged. She is highly intelligent and absolutely hilarious. She doesn’t hold back, and I love her for it.

I am no longer accepting awards, as I’ve decided my time is better spent writing, reading, commenting on posts, and tweeting other people’s content that is worth sharing. Tweeting links to excellent content works well for me for now. Please check out my tweets at http://twitter.com/KittOMalley (@KittOMalley) to find links to other worthwhile content.


Filed under: Awards, Gratitude, Mental Health, Posted Thoughts, Theology, Writing Tagged: Angel Award, Award Free Blog, gratitude, Liebster Award

Everyday Posting

I could very easily be one of those people who post multiple times a day. I have seriously considered this when i can’t get my mind to just SHUT UP!!! However, right now my ability to concentrate for long enough to write a truly good something isn’t great. So, I try to make sure I don’t go more than 3 days without updating.

I went to my new doctor yesterday. I took the results with me from my testing and spent about 45 minutes talking with the therapist. I really like them. But it was funny. I had to laugh at myself. I had never really considered that I could be or have bipolar or something else. So it’s been a long couple of months trying to adjust my mind around it. And therefore I am having a hard time recognizing my symptoms. They asked me what I was struggling with right now, and I was like ” I don’t know, everything”. LOL

It’s not really funny, but I even told them that this stuff is normal for me and so it’s kind of like a learning curve to figure out what my symptoms are. It’s rather frustrating. How I am I supposed to know what’s normal for everyone else? Or how they think about things and react to them? They ended up saying they wanted to touch bases with my husband but would probably be putting me on a low dose lithium. I don’t know how I feel about that. But I guess I’m ok with it. And we will see what happens.

I also realized today that I have been taking double my dosage of prozac for a couple of weeks since my last refill. It wasn’t intentional but it sure explains why I suddenly came out of my fog and don’t feel nothing for the first time in a couple months. So, I’m not looking forward to going to back to not feeling. I’m gonna have to figure out a way to fix that. I don’t like feeling that way, and it’s not worth it to me in many ways.

I know that there are many people that struggle with those feelings. It’s like a whole new world when your emotions are in check, but for me it feels like I’m not feeling. I know in my mind that is not true, but still it doesn’t feel right. I know, duh!! That’s the point. But still I have only ever known this way, for it to be drasticly different is a hard thing to adjust to.

They do seem to want to make sure that we find the right diagnosis, and that is something I really like. He said my presentation led him to think bipolar. But I don’t have any diagnosed bipolar in my family tree. I’m pretty sure there are a couple people who may have it, but they have never been diagnosed. And I’m thankful they aren’t just jumping on a bandwagon. I’m looking forward to going to see the therapist as well. Being able to ask questions and discuss things that come up and learn about them from a clinical stand point.

On another note NFL football is back tonight!! I have 4, yes 4, fantasy teams!!! I am so excited!!! And I plan to have a VERY good fantasy season!! And as always…GO BRoncos!!!

Until next time…Be blessed!!!


The Storm

There comes a time when despite your best efforts to avoid further chaos in your life, you are faced with a crisis.  Regardless of your emotional state, you have to find a way to maintain your sanity and weather the storm.  In my case, it just so happens that this crisis involved my father.  He will be turning 85 on September 20th.  As far as someone who is 84 is concerned, he is in good health.  However, he does suffer with terrible memory loss, and has occasionally been known to pass out.  A few weeks ago, for a reason that is unclear, he proceeded down to the basement in his house, lost his balance, and fell.  The floor in the basement is essentially concrete.  By the time I heard about it, he was in the ER at the hospital nearby, and was just a mess. 

Ever since my mom passed away, and I was institutionalized, I find it extremely difficult to set foot in any hospital.  Let alone the one that had me committed.  Walking into that place brought back every unpleasant feeling that I had been trying to avoid.  On top of those feelings of sheer terror, and the burning in my stomach, you can add the fear that I was also going to lose my dad.  I’m just not ready for that.  I know nobody is ever ready to lose a loved one, but since I still haven’t recovered from losing my mom and my brother, I am even less likely to recover from the loss of my father. 

Thankfully, when I entered the ER where he was being treated, I knew that he was awake and fairly aware.  He was confused, and kept talking about strange things.  However, judging by the enormous cut on his head, and his torn up little body, this was no shock to me.  I so wanted to stay with him, and talk him through this.  Yet, I so needed to get out of there.  It’s a horrible, horrible feeling.  Knowing that you can’t be there for someone 100% because you are so lost in the maze of your own fears. 

Since that day, my dad has been moved a couple of times, and has had surgery on his neck.  They removed 4 sections of his neck and replaced them with metal rods.  Had he not had the surgery, and he fell again, he would have been paralyzed.  His current status is that he has physical therapy every day.  He is in a neck brace, his right hand is broken, and his left hand still hasn’t returned to a functional state. 

Every time we go see him, he recalls a letter that I wrote him this year for Father’s Day.  I decided that I wasn’t going to get him a card, I was going to write him a heartfelt letter.  Apparently, he had forgotten about it, and discovered it on his desk a few days before his accident.  He cries every time he recalls my words.  He said to me, “Boy, you’re a real writer.  I didn’t know you felt that way.  I feel the same way about you”.   Despite myself, I had to smile.  I knew that now he was truly aware of my feelings for him.  The best part?  I knew that he was proud of me, and now looked at me in a new way, because he knows I have writing skills.  What an amazing gift to receive through such a tragedy. 

I still have tremendous difficulty going to see him.  It’s very hard to see the one person that has always been your Superman, in that state.  Not to mention, I have to deal with the possibility of seeing family members that I have severed ties with.  If I can’t get there to see him, we call him and one of the nurses holds the phone up to his ear.  We are hoping he is released before his birthday.  I am working through my fear, and with the support of my husband, I hope to come to terms with the situation.  I love my father, and I am grateful that he now knows without a shadow of a doubt how much. 

True strength is not necessarily found where you would hope.  It is found in the subtle nuances of your daily life.  Every day that you wake up, and summon the energy to live, you are finding strength.  Now that you have lived through another catastrophe, you can breathe a sigh of relief. 

 

Dedicated to the memory of

Robin Williams

And

Joan Rivers

Thank you for the laughter.  You will be missed.

 


Wonderful Team Member Readership Award

Since I’ve not been able to write anything for such a long period of time, I was slightly stunned to open my email a few days ago and find an award from an old blogging buddy of mine.  I was partially stunned to find that I had received an award at all.  I was also […]

The Crisis of an emotional ‘Storm’

  Okay, so yesterday was a bad day. It was the culmination of a bad few weeks really. But yesterday was ‘’bad’’ (note the inverted comma’s). For most people if they have a bad day, they can wake up the … Continue reading

Today is my tomorrow and I am still here……

Today is that other day and I am still here. When people say ‘Tomorrow is another day’, it seems so lame. But tomorrow (or today) is that other day for me. I am still here. I am alive, I am … Continue reading

Oesinophilic what?!

Is the response I generally get when I tell people about my diagnosis. So instead, I have started explaining instead that I have a Very Rare Autoimmune disease. 

Because, let’s be honest here, no one actually knows what an autoimmune disease is.

At least I didn’t. Until I discovered I have one. Basically an autoimmune disease occurs when the body’s immune system gets confused and starts attacking itself. Body fail. 

My particular disease results in my oesinophils (little soldier white blood cells that usually target infection or allergic reactions) having a partay in my gut, and storming my blood. Thinking that there is need for warfare, more and more troops are called in, and my gastrointestinal tissues are seen as the enemy and attacked. Awkward!

autoimunetough

The result is severe abdominal pain, vomiting, diarrhoea, weight loss (the one symptom I didn’t get. Typical!) and other gastrointestinal symptoms unmentionable in polite company. Kind of like your average 24 hour ‘gastro’ attack. Aside from the fact it doesn’t end after 24 hours. 

What little research there is indicates that the “gold standard” of  treatment is to use steroids to immune suppress, or stop those little soldier cells in their tracks. But, as I found out the hard way, Prednisolone + Bipolar = Complete Disaster. The second line of treatment was to avoid all potential food allergens by sticking to an (extremely annoying) elimination diet, eliminating gluten, seafood, nuts, soy, dairy and eggs. While this has lessened my symptoms to a degree my eosinophil blood count is still four times the normal limit. Plus I’m kind of driving myself mad trying to find food to eat that is allergen free. 

So this is where I’m at. Trying to get my body to work, and wondering what will happen next. My immunologist has indicated more tests and biopsies and potentially starting on a regime of “a different type of steroid that won’t send me mad”. 

That would be a first ;)