Tricky

This line we walk. Humor, desires, honesty, beliefs. All taboo to someone. It's a matter of surrounding yourself with those who accept you and your thoughts, your desires, your humor, your honesty, your beliefs. So it's not always a shit storm when you say what they don't like too loud.. or you refuse to buffer society from reality. Right is right. Real love and pride are about knowing something might not be perfect and that's okay. Things can be good but not right for everyone. It doesn't all have to fit in a snow globe or a cookie cutter or suit everyone. 

If you live your life with secrets, shame, & trying to make everyone else happy/comfortable.. well you will fail and fail to live. It's not about what everyone else thinks. What they approve of. It's about being okay in your skin.

Why I'm so damn "Lazy"

I have a hard time showing weakness.. so I puff up and try my damnedest not to show the pain. Jase, my kids, and a few close friends see it but I fight through it as best I can until everyone is gone or I'm just alone with these ppl and I can fall apart. I also do things that I shouldn't because I'm determined to not be completely useless to my family. I will bake or cook all day running back and forth to the washroom. I'll push myself through things then I fall apart. So everyone sees me doing these things and miss the part where jase has to help me in the bed or help me change my clothes. They miss the tears or vomiting or sometimes three days I can hardly move after. 

For those that do not understand what it like to live with UC (Ulcerative Colitis) let me explain. It is not Irritable Bowel Syndrome. It's not a tummy ache.. it's not indigestion.
One GI doctor says this

"Crohn's Disease and Ulcerative Colitis are the two most severe digestive afflictions. They cause life impairing symptoms, necessitate long-term dependence on powerful drugs, and often result in debilitating surgery and even death. Tens of thousands of Americans are affected. Both diseases are classified under the medical rubric of Inflammatory Bowel Disease (IBD)."

Here is a list of the symptoms http://www.ulcerativecolitis.us/app/symptoms.asp and since I am fortunate  enough to to have Pan-Colitis (pan being entire) I have all but the effected liver thus far. 

In addition to unbearable pain, you also get swelling, (I myself go from a size 8 to a 16 in a matter of hours), and nausea. The nausea can be constant or come and go but causes most people with Inflammatory bowel disease to rapidly lose weight due to inability to eat. I also have diabetes so I can not go without food so I literally choke it back. Sometimes through tears and fighting being sick. Food has very much become the enemy. I know as soon as I eat any comfort I might have felt will only remain about 20 mins. As soon as it hits my system it gets bad. The whole of my digestive system is full of inflammation.

It literally starts at my mouth and ends at my, well end. This inflammation also consists of ulcers that often burn like acid and fire. Feels a bit like things are trying to eat their way out. When food hit is it's even worse. (another reason ppl lose weight.. some days it's not worth eating.) Within 30 mins of starting to eat my first meal of the day I'm in the bathroom. I can not leave my house or do anything that requires any attention until the first few hours of system purge. (you come up with lots of funny or silly things to call it just to deal with the embarrassment) First purge is anywhere from half an hour to 3 hours in 15-20 mins intervals. Exciting huh? School days or days I have doctors apts early.. I don't eat until around noon which really screws up my blood sugar but if I want to leave the house I can not eat. It's similar after lunch and dinner although it's less urgent but more difficult.

I no longer eat out.. no lunch with friends or the kids.. when we do go somewhere for dinner or what not I have a limited time I can stay after. I haven't dealt with the whole going in public. I just can't do it. Not just for the humility of it but also the pain, bleeding, lack of stocked bathroom, and general unease of the whole situation so it's just not a good idea.

Some days the inflammation causes so much pain that I can barely stand to have anything touching my stomach. Others it's too painful to even sit up. Then there are days when I get through the morning horrors and then I'm somewhat functional.

Then there are the other things that are both connected and not connected.. Things they believe are connected are
Arthritis (spine, sacrum, joints)
Skin lesions, rashes, lumps
Chronic Dehydration
    Dry eyes and inflammation
    dry sinuses w/ inflammation
    dry mouth and gums w/ inflammation
Gastritis
Esophagitis


Unrelated (so they say)
Degenerative disc disease through out spine with several pinched nerves.
Mitral Valve Prolapse
Tachycardia
Post Ventricle Contractions
Fibromyalgia
Diabetes
connective tissue disorder (causing disks to bulge, slip, joints to be loose)
Hiatia hernia
kidney stones
Polycystic Ovary Syndrome
Hashimoto's Thyroiditis (autoimmune thyroid disease)

There is probably more but I often forget all the crap they have diagnosed over the past 10 years.

Now for the point of all this TMI .. I'm having a lot of issues feeling like a burden to my family.. useless and totally out of control of my existence. This coupled with constant reminding from several people that I am all those things is really messing up my already jacked up head. It's hard enough to deal with the hand I've been dealt without all the reminders of how pathetic and troublesome am to those I love.

So here it is.. in a nutshell. I use to be very good and work my ass off at everything I've done. I brought home $800 a week 10 years ago. I have many skills and many talents. I hate to not have my own money and tend to do without my necessities to make sure Jase and the kids have what they need with what money I get. I feel trapped and dependent without my own money. I feel controlled and repressed and it causes me a great deal of anxiety and i tend to shut down emotionally.. and yet people think that is my choice. That I chose not to work because I'm lazy. Well.. give that a think. I choose to ruin my own life. To feel imprisoned in not only my body but my home. I voluntarily  chose to give up my security, sense of self, fulfillment, and to waste not only my skills with computers, people, business, but also totally blow off my creative talent. If I could find someone to give me a job in my areas with accommodation for my health issue I'd be all over it.

But honestly, who is going to say.. oh sure you can be away from your desk on good days 5-8 times during the work day for 15-20 mins at a time.. and 20 + times on bad days. No problem and if you have to get out of the chair and sit on the floor .. then the desk.. then lay on your side.. or on your back or put on that TENS unit or alternation heat and ice or put on those lidocaine patches. Not a whole lot of people are going to say.. sure.. it's fine if your production is only 2 hours a day on some days.. I keep trying to find ways.. to get stuff done but when you have NO disposable income at all you can't buy supplies or start things up. I can come up with a million ideas but you don't get far with ideas.

Scrambled Brain with a side of WTF

I have recently been doing a lot of thinking, HUSH!.. more than usual. It is time for a major behavioral change. Einstein said, and I've often repeated, that the definition of insanity is doing the same thing over and over and expecting different results so.. it's time to get sane.. at least in some aspects.

I tend to be a very open person on the surface but my real thoughts and feelings are deeply guarded. Opinions are freely given regardless of advisees desire for them. Questions are answered with honesty often to a fault. My thoughts/feelings, serious ones, (I think there are those we show.. those we will have coaxed out of us and others we keep entirely to ourselves) the ones I rarely share, well they have had me in quite a state for some time.

I tend to vent and rant over day to days but the things that really bother me I deal with on my own. I have never really been able to express them to people in a way that I felt they understood. "It's complicated", I say or "you know I'm crazy so you won't get it" and I am always assured that it's gotten or others know where I"m coming from but their examples and their understanding are always a miss. The comparisons just aren't there. So.. I yeah yeah or yup and leave it for myself to deal with.

At this point my head is scrambled. Doctors have a way with the mental whisk that seems to do it every time. I supposed there is some ray of hope somewhere deep inside that thinks they will figure out a cause or at the very least something that has a viable treatment but they never do. They deliver the "this neck of yours bad" or "Best we can do is some pain control" or the best one "these will help" **doctor writes several Rxs** They never do. I've taken them all. One day I list them all.. the neurotin, topamax, Elavil, a slew of antidepressants, boosters, nerve pills, pain pills, anti-inflammatories, all of which added another 2-4 drugs to combat the side effects.. They do a wicked good head job on a head that is already pretty employed but no help with pain.

This last time with the bone doc, that one whisked me good. He tells me my entire neck, save one cushy disc, is bad "really very bad" but there is nothing to do for it until I'm fortunate enough to loose motor function from the compromised nerves from C2-T1 heh. No injections, no manipulating, "we could try some PT but it's not likely to make much difference."

It's interesting, I mean, chronic pain and I have been in a committed, long term for 10 years or more now but I would like to be able to move my head normally again. Also to not have loss of function and surgery that will mess up more things the only hope for the future of my head rest would be good.

Back to thinking. This was the catalyst or in crazy chick terms, the trigger for the latest bout of WTF. The last two weeks has been a constant emotional roller coaster of questions. How do I deal with another part of my body that is permanently and unrelentingly painful? What new life changes do I have to make to accommodate this long term?  What do I do through the progression of loss of range of motion? How do I limit stress to prevent neck tension to put further strain on my already messed up spine? (SO NOT HAPPENING) What does this mean to my life this time? How do I put on the happy face and be a wife, mother, friend, daughter, confidant, therapist, artist, & domestic goddess? How do I bare more pain? Do I let the docs finally increase my meds? Will I have to change my 6 pillow, two wedge, nightly arrangement now? What my limit of what I can take? Where is the motivation to fight? Do I even want to fight anymore? Can I live with another debiliattingly painful area? Are the life modification I have to make this time something we can afford? Is the yet again modified life worth the trouble and the pain I endure to live it?

No that is not a cry for help or an I'm going to kill myself. It's not about wanting to die or whatever.. Life is relative. I'm stuck here. Like it or not. I brought 4 people into this world who didn't ack for it so I'm here till I'm not by choice of the universe. The question is more of how I live. If it's even a life.

At the moment I'm in automaton mode. I get up, do what I have to, struggle with pain, go to bed, repeat. Pain is making me ugly. I can't even stand me right now and I'm very angry with the world in general.

My family need to be less reliant on me for every detail of their lives because right now.. I am not in any shape to run the lives of all of these people. The office manager is on holiday, supervisor away from her desk, secretary is on lunch, the therapist is booked, the doctor quit, housekeeper is ironing, cook well she has to feed you but check your food carefully. All I've got right now is what I need to get through this ride.. Until my eggs separate and start looking like a frontal lobe again I just can't be everything.

Therape Me

Therapy in one form or another was a reoccurring event for me. As a problem child I was theraped by many. This resulted in labels. ADHD, LD, PTSD, PD, and lots of other letters. They labeled me so many things that my medical files gave the impression that I had sponsorship from the APA (American Psychiatric Association) like a nascar (SP). Treatment included a host of psychotropic drugs, family, group, and individual sessions, hypnosis, psychological referrals from school, and inpatient treatment. The silver in that was finding I wasn't so much slow LD as had an IQ between 135 and 165 depending on which time they tested me. The school system that shall remain nameless, marked me as LD and put me in basic reading, basic math, and curved everything for a child who was what they now call special ed. All of this was supposed to fix me. Needless to say, it did not acclimate me or make me into what was considered normal but it did teach me how to fake it.

As a young adult I repeated the cycle thinking, clearly I needed someone to look up from their notepad, over their glasses and say to me "and how did that make you feel". The majority never had a clue what to do with me. Terms like conform, social standards, and adapt were common from most. None of that made sense to me. My thought process seems perfectly logical. Nothing in my thinking made me act out deviance. Nothing made me a danger to myself or others. Nothing about how my mind worked did anything wrong other than question and try to understand things. So why was it wrong? I gave up on shrinks for some time after that.

In my early 30s doctors treating a pain issue suggested I talk to someone to help me through the whole living with chronic pain thing. Figuring this might also be another chance to find someone who could explain why I didn't work the right way, I made some calls.

For anyone who hasn't be theraped, let me tell you, if you weren't crazy when you went in, after they put you through the ringer to try to figure out what kind of crazy you are.. you will be. I understand that there is a process and they have procedures but this is not my first rodeo and I know the drill. Shrinking me is what I have done best over the years so I can pretty much go in and say. This is what I am..how I work.. what do you think. They don't like that. Evaluation is what they call it.. but when it was done, for the first time I sat in a room with a person who got me.

After a few times of working through my history and the mess that is, she told me I was not wrong or broken. Thinking differently was not crazy. An inability to understand the evils of humanity was not a malfunction in me but an ability to think about things on a different level. From a different place. No one can say it's the IQ that flips a switch or life experiences. They don't know if it's found more in one kind of person or another or if it just me and some strange dude in some other town, or if half of the populous thinks this way but is told it's not normal. It just is what it is.

This therapist was so solid and strong it made me want to believe what she said. She had traveled and studied with Yogis, Monks, spiritualist, and she was open to everything. I had no idea that some of our spiritual leaders, inventors, scientist, etc were different thinkers. Abnormal. Crazy. Broken. The crazy ones, as Apple would say. By no means am I saying that I'm even close to being as special as these people but to know that many of them shared my labels makes it easier to have worn them.

Abnormality is not a problem for me. Now I embrace the oddity of how I work. Life is lived by my terms. I strive for understanding and enlightenment, to know who we are, where we come from, where we are headed. People are complicated, fascinating creatures. While I do not socialize as much due to my process, I do like to observe. (not in a creeper way) I have everything I need from people and prefer to keep the majority of them at a distance. It is far too much strain to have to constantly explain my questions or comments and my "but that is illogical"s.

Largely my life consists of Jase, my best friend and love, our 4 kids, and a few select family members and friends who dig me for my oddities not despite them. For those of you who said I would never be right, that I would never be able function without medication, for those who said I would never be anything more than crazy, well, my kids are all the most well adjusted, kindest, most loving, and compassionate people I have ever met. It amazes me every day that I didn't screw them up but, I didn't. I am also in a very happy relationship. We just genuinely like each other. (crazy I know) After over 10 years, I think we are closer. Maybe you should think more like I do.    

Do I need a title?

My father use to have this saying.. or thing he would say when ever I approached him worked up. Good or bad he would usually say "Put some words of wisdom in my ear". Some times it made me laugh, other times it just pissed me off. I never took the words to heart until long after he died. Now that I'm older and maybe a little wiser, I think about this a lot.

Years ago I didn't really think about anything but what I wanted, thought I needed, and how to get it. I was angry, selfish, spoiled, and cold. I didn't warm up much.. but I did learn some things.

One of those things is that I think way too much. I think about everything all the time. My brain is so busy with the hows and whys of life that I tend to be constantly giving a speech on one thing or another. I'm often ignored or worse, not. People get offended or angry or become totally indifferent.

Apparently to start a sentence with the precursor of "I mean no offense" or "This is just out I see things" does not lessen the blow or the accusation that I am being condescending.  I'll admit, sometimes I am intentionally being such but for the most part I am giving an opinion. One that I believe holds value not only because it's mine but because I have spent a very long time forming it. I weight sides, consider perception of as many sides as I can conceive, and try to understand the motivation and reasoning behind all arguments. I do this because I believe, with everything I am that is where you find truth. Not in one side or the other but somewhere inbetween. One's perception rarely reflects truth. (I'm sure at some point I'll get on perception.)

This helps me try to figure out where people are coming from and what I believe to be the right idea from it. That is how I form my opinions on everything from my kids to my political views. Not because someone told me it something was right or because there is reward or punishment or because it works out so that it fits with my current behavior but because of the basic human, animal, or right of life. It's not easy. I often find I end up understanding where the other side is coming from and how they came to their opinion but i also understand why I am the way I am better as well. Also, it is not a great tool for social interaction. People do not want real opinions or to look at life from the other guys perspective they want to think what they want and feel what they want without caring why. If you point out that although their feelings are valid, (because our perspective is often how we define truth, a fallacy but truth is relative to the observer.) one must considered intention, (bricks and motar of hell? bla bla whatever .. it matters) context, and our own personal experiences that might contribute to how we react to things. A lot of work right? Well if we want to learn to be better people than we have been in the past, it takes work. 

I feel so many people spew the 'opinions' given to the my society, religion, or to support and justify their behavior. They alter their beliefs to fit their lifestyle. People fall into mob mentality and clan behavior and have no awareness that they never even considered the other side. All throughout our history we have sat on the sidelines and watched this take place. War time atrocities, witch trials, persecution, racism, segregation, extermination, hate crimes, etc. We know it's wrong. Even if we don't believe what others do is good for them or the world.. we know that it is not right on any level to harm the way we do. The tribes we belong to, our clans, our mobs, often dictate our thoughts. Everything in society trains us to allow it. First our parents, schools, churches, government, work, peer groups, etc. Most never realize they have never formed an opinion on their own.

While I am not sure that I believe that now, at this place in my life, that I am what I consider wise, I do think I am on the path of being so. With this being my way, how I see the world and form opinions, maybe my Dad wasn't too far off.

****NOTE

I'm not a writer, as you might have noticed. I suck at grammar, punctuation, spelling, paper structure etc.  I type like I talk.. I.. or I , when I would pause in speaking.. so if you have issue, please feel free to not read anything I write. It really just isn't that important to me. :)