It’s Already Over…

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I wake up every morning to a “standard” level of pain. It can waiver slightly, but it pretty much stays the same. I think about waking up next to someone and having them see me fumble my way to my bathroom. I imagine them realizing that I am going to be some level of ill at all times. For the rest of my life. I can’t help but to think:

“It’s already over.”

Chatting. Laughing. Having a great time, when suddenly a pain shoots through my side, causing me to pause and slouch over in pain. Visceral hypersensitivity has decided laughing is over.

“It’s already over.”

Eating. Sharing. Getting to know one another, when suddenly my spoon drops from my hand, causing soup to splatter all over my front. My hand lost grip due to my arthritis.

“It’s already over.”

Outside. Walking. Holding hands. Sweet nothings, when suddenly I slouch over and need to find a bathroom! My IBS is acting up, and it is urgent!

“It’s already over.”

Couple walking in feild I am often referred to as a man hater due to my very strong opinions about women’s rights, and protecting us from the fear of rape and abuse. Calling a woman a man hater over her fighting for her gender’s rights is simply ridiculous. Not one day goes by where something doesn’t happen that is hurtful or abusive towards me from a man. We are taught to ignore it. To walk away. To let it go. Some also think that since I meet and talk to so many men online, that I must just be a man hating slut. This can’t be furthest from the truth.

The reality is that I am ill. I have met men in the past I liked, however my body was out of order. Trying to date someone is so hard when you have so much going on inside. So much going on in your body.. and in your mind. In my mind. I know that the more I think, the worse it gets. Maybe not the illness, but the fear. The thought that once I come out with all of my ailments, the first thing they will do is run. They will want to run as far away from me as possible, and never return. Each time I see a face react to a moment of clarity. A moment of realization. Each time I can’t help but to think:

“It’s already over.”

But is it? Is it really over, or is it all in my head? Do they want to stick around? Do they want to talk about it, learn about it, and even one day accept it? I have no idea, but I figure that if this is the case, one day it will simply happen. Someone will educate themselves. They will take the initiative. They will see the value in me that still exists, and base what develops off of that. I may be the one standing in my way, but it has nothing to do with my feminism. It has everything to do with my self sabotage. My fears. My pains. My hurt and anger still lingering because I am ill. It’s possible that it really is already over, long before it begins.

Dear Facebook..

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Visceral hypersensitivity. I was told about 6 weeks ago I have this. It is directly related to IBS, and is easier for me to just call it severe IBS. Technically it isn’t.

Link below.

http://gut.bmj.com/content/48/1/125.full

Read.

Learn.

Understand.

I have this. It is very much related to everything else I deal with. I still have the other stuff. That did not go away either. I am treating them. Working on them. Dealing with them daily. I am glad I am feeling better than I was before. That being said…

It pretty much will control my life until I get it under control. Even then, it will control nearly everything I do. What I eat. Where I go. WHEN I go. What I do when I am there.

woman-frustrated-frustration-angry-argh-laptop-notebook-600x400 There is no quick or easy fix. For any of these. It takes time. Healing. Finding the right diet balance. Maybe the right medication. Maybe a nice mix of both.

Elimination. Additions. Testing. Food journals. Successes. Failures. Relapses. Anger. Frustrations. None of this is easy, or fun. I know I am no longer fun either. I can see it in your face. Hear it in your voice. Notice it in your absences.

How will I get back to normal? I won’t know until I get there…

I am not asking for you to be sorry for me, just to understand me. If you don’t want to know how I am, don’t ask. I will tell you. Sometimes I politely say “Fine” because I know that is what you want to hear.. but I would prefer you just don’t ask me. We can still talk and hang out, but understand that if I don’t come, I am not rejecting your invites to be a jerk. Why stop inviting me? Because I am no longer fun.

I want to go. I want to be fun. I want to be there. My wants don’t control my body anymore. You think it is a choice? You think I do this to myself? No. Educate yourself.

So…

Quit being a jerk to me about it. If you can’t handle it, then don’t pretend to still be interested in my friendship. Walk away. I would rather lose you than think you are on my side, when really you are behind my back mocking me. Talking about me. Saying those terrible things that just aren’t true because you are ignorant to what is happening. Just walk away. Walk away and stop being fake. You’re not doing anyone a favor. Not me, and not you.

I’m Just That Kind Of Person…

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I often think about writing motivational speeches to myself, even with the knowledge that is total bs, just in hopes that I’ll actually believe myself one day.

12.21.TrulyMotivationalSpeech_670556961 Not the standard “you can”, “you are”, “just keep swimming” speeches, but intense, long ones with specifics about my life. I am aware “positive thoughts bring positive forces” is actually only your perspective of a situation. Someone trying to merge in front of you on the freeway would be nothing to bother with one day, but on a bad day it could result in the morning being even more ruined!!! Bad things happen all around us every day, and so do good. It just depends on what you think of that moment. See? Some kind of motivating blah blah, though these are already my daily goings about.

My problem is that even when written by me, taking about my goals… I’ll still think it’s total bs. I’m just that kind of person.

It’s All Moving Too Fast..

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Groggy and still a little drugged from my nighttime muscle relaxer, I wandered into the bathroom. My guts churned and growled at me as I took each painful step. I’m used to the pain in my feet in the morning. Same old, same old. As I finish my painful, and awakening business on the toilet, I looked at my scale right next to be. “I wonder how much I weigh…”
Pulling the scale out, I laid it flat on the floor, sighed, and stepped on. I stood up straight for about 5 seconds then looked down. download “Uhhh… that can’t be right.” I had weighed myself Friday, and was down 20 in the last 5 weeks. Let’s try this again. Step off. Move slightly around in case the floor was not leveled and the cause for the results. Back on. Same weight. Moved. Same. Moved again. Same. I had lost 5 pounds in three days.

As someone who gained 80 lbs in a year from illness, it’s nice to see that I’m losing weight… but this fast? Last night I had taken an epsom salt bath that had resulted in black water afterward. Not the best thing.. but to lose weight this fast concerns me! The only thing I can think of is that for one, I’m very sick and eating healthier… which still makes me sick. For two, the obstruction in my colon was gone, and allowing my body to process the foods I eat, instead of holding onto them. Then burning the fat instead of feeding myself toxins non stop.

As happy as I am today that people have begun to notice the change, I’m still hurting. I have fissures through my entire colon. Internal hemorrhoids. Polyps. It’s going to take months to heal. Using the bathroom feels like FIRE! But at least I’m getting skinny, right? Hmm… it hurts. If I have to go through this the entire time until I’m thin again? I just want to stay fat instead…

Lucky, Lucky Me…

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This morning I woke up incredibly sore. My 4 year old had climbed into my bed during the night, no doubt to waking up feeling strange since I moved her sister into another room yesterday. Now my two that are currently home are not sharing a room. This is a huge relief for me, as bedtime and punishments are going to go much smoother. My punishments of sending to the room are more of my girls taking a breather. The corner and chores are for REAL punishments; but I digress.

I woke up with sore arms, legs, back, and neck. I am sure I had slept funny, since I was knocked out by medications instead of falling asleep on my own. I have to ensure I am in a good position before I nod off, otherwise I will likely stay with my head slightly tilted, and wake up with a stiff neck. This is also partially due to the disks being destroyed in my neck. Almost anything can cause my neck to twinge and ache, unless I am careful.

Looking at the clock it was 7am. I needed to be to work in an hour, and have a 25 minute drive. CoolClock I immediately decided that my hair and face were last on the list of things that needed to be done today. Getting out of bed, I put my aching feet on the floor. They screamed at me to get back in bed; feeling like I had stepped on a pile of broken glass, as well as swelling and burning. As usual, I ignored them and did that funny walk I have to do into the bathroom. Flipping on the light I could see that the small amount of makeup I had applied yesterday was all cleanly washed away by the hours of tears I had shed. My eyes were only slightly swollen and red, so a tiny bit of concealer and some mascara would hide that away. It took less than 30 seconds for my face, and less than a minute to pull my hair into a messy, curly ponytail. Good enough for me.

I yelled out to my already awake and playing kids to get their own clothes on, and settled into finding mine. Of course, today was a plain jeans and t-shirt day. Easy to find ones that fit right now, as I have dropped 20 lbs since I suffered through the bowel obstruction a few weeks ago. Not anything that changes how I look to those around me, but enough that I can feel my clothes getting a bit more loose. Good for when my skin is ultra sensitive, as it is today. Throw on my favorite striped hoodie, and I am good to go. I was already sore, exhausted, and my heart hurt. What a typical day for those of us who suffer from any type of chronic illness. After using the bathroom, we can add a sore ass to that pain. I sure do love fissures, don’t you?

Going into the hall I could see my 7 year old all ready to go, tying her shoes as fast as she could. She knew mom meant business. She knows that I am entirely heartbroken over what happened to my pet Bobbi The Rabbit. The youngest, however, was still pantless and dancing around in her own special amusement. Pretty typical of my carefree curly headed baby girl. At 4 years old, she towers over all of the other kids her age, and looks more like she would fit into the first grade. This causes her to be clumsy, and fumble over herself constantly. This also means that she has more accidents, and accidentally causes harm where if she were a normal sized 4 yr old, no harm would be done. Throwing a pair of cropped pants her way, I insisted she hustle, or get left. The good thing about curly hair is that it always looks intentionally messy. No need to fight this girl on her crazy locks. Let it go, and let’s go.

After dropping my girls at the daycare, I hurried down the highway towards the freeway that would lead straight to the office. Recently I had my car worked on, due to a hole in my radiator, and had found to have random car troubles since. I did find it peculiar that there was a small puddle under my car this morning, though I figured it was just from the sprinklers. I took a few photos just in case. Back to driving down the highway, I happened to look down and notice my thermostat was going crazy. hqdefault I flipped on the heat. Nothing. Cold air. GREAT! This means I was COMPLETELY out of fluid. This is a double concern because I filled the car to the brim no less than a week ago, and obviously because of the puddle. My car was about to blow. FANTASTIC! It was a good sign that no smoke was coming out of the car, as that would mean it had likely blown a gasket, or another radiator hole. There was a McDonalds no more than a block away.

After popping in the hood I was able to confirm my suspicions. There was fluid leaking near the radiator, which looked like it was at the end of it’s ropes, and my overflow was empty. I had 20 minutes to get to work, and it was very apparent that was not going to happen. Just like any child in a stressful and binding situation… I called my mommy. I called her and belted out my frustrations, my complete unwillingness to work with the mechanic’s shop again, and begged for some help. I always seem to end up having one of my amazing crisis’s on her day off. Lucky, lucky me. I get to wait in the McDonald’s for as long as needed until my mom can come get me and whisk me off to work. Luckily I have a friend whose husband is a mechanic, and would take a look at it for me later today. Lucky, lucky me.

So, here I am on my lunch break. Trying to keep my head in the game, and not think about all my ailments. Not think about the isolation that I feel, and the unhappiness that is always lingering around me. I have multiple client accounts to work on today, which only three out of the 10 accounts that need vital attention are actually mine. As an escalation and client concerns manager I deal with this daily. I do not mind having to do this as part of my job, as I am quite good at it. Anything that I can successfully do at this point makes me incredibly happy. That being said, on days where everything continuously blows up in my face, it can be stressful. That has been the last month for me. Lucky, lucky me.

I don’t want to deal with any aspect of my life right now. I have the urge to just run away, and let someone else deal with it. To hide away from the world, and not even have anyone know who I am and what I am. I don’t want to take my meds, because I don’t want to have these illnesses. I don’t want to have to make the hard decisions. The little decisions. ANY decisions. It would be nice if I could get a break. One that happens not only because I am too ill to get out of bed. Though I appreciate the breaks from the running around of my children and life on those days, I would love a break on a good day. I would love to get out and just do things for me! On a good day! Instead I am at the point where my anxiety is high, and I want to run. Run away.

Lucky, lucky me.

I Really Just Want To Be Alone… Rant…

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It’s funny how little things can bring up some big emotions. Here I sit, almost 2am, watching the final season of “How I Met Your Mother” that I haven’t been able to bring myself to watch yet because it was “our show”. I haven’t watched “Breaking Bad”, and even watching “The Walking Dead” is difficult. My head hurts, my body hurts, and my heart hurts. For no other reason than remembering everything I lost. I am not just referring to the relationship that messed me up mentally more than any other relationship I have had, but everything that I felt I lost at the same time. My life, my youth. My everything. Being diagnosed with any autoimmune disease is hard. Beyond hard.

The past few days I have felt really alone. I honestly WANT to be alone, simply because it seems the people around me just aren’t there. They are somewhere else, and that is ok. I have been ignored, yelled at, pestered, questioned, and exhausted the last few weeks. I have been in the hospital, in and out of the Dr office, and pumped full of drugs. I have curled up in pain due to what we later found out was an obstruction. I have missed so much work, I am about to lose all my benefits… which is what pays for my medications. My radiator had to be replaced. Then a fuse blew. And my life at work has gotten hostile due to my absence. I am aware that others think I get special treatment and should have been fired already. I can hear them talk, and see the looks. I just ignore them because they have no idea who I am, and they have no bearing on any decision.

After a terrible few weeks, three of my sisters decided to throw me a “girly night”. When they arrived with snacks, pedicure items, nail polish, and so many other pampering items, I was so surprised! bigstock-Group-women-with-facial-mask--36733561 I can no longer drink, which has been our favorite sister past time for YEARS, so they decided to do the traditional girls night theme. Though, they did bring beer for themselves. They also brought Cujo. My sister Blondie’s (not her real name) awesome rottweiler, who scares the living bejeesus out of my rabbit. Cujo just turned 10, and has no interest in my terrified little buddy, however she was not happy with this situation and spent the entire time in her burrow in her habitat. It was such a loving and happy gesture, and was SO much fun that we decided to commit ourselves to it every month or two. I was so pleased with my overdone nails, silly toenail polish and awesome face mask thingy they bought me… until… I got a message from one of my other sisters.

My mom had three girls. The oldest who we shall call “Hippy”, one we shall call “Tinky” and myself. Hippy and Tinky both tend to feel like the odd man out. The “black sheep” of the family. Them, along with a few other siblings, tend to feel left out of family functions and often forgot about. tumblr_n5e597uyTa1rfm88zo1_250 With 19 kids in my family, I can imagine there are plenty of family occurrences that I am not only not invited to, but will never know about. Such is life. I don’t take it personally, as I know my family loves me. That being said.. Hippy apparently does not feel the same.

I have spent the last two days dealing with drama between Hippy and my sister we shall call “Retro” (She looks so good in retro styled outfits and hair). Retro and Hippy had a falling out a few years ago over their personal lives clashing together in a way that turning into a car wrecking, plane crashing, train wrecking mess! It was nasty. And I tried to stay out of it because I know how both of them are. Hippy is very set in her ways, though she thinks she is very enlightened and open minded. She really is not. I know she means well, so I tend to just ignore what she says to me, though half of it is actually really mildly insulting. She doesn’t mean harm, and truly thinks she is helping. I get this. Retro does not, and takes the insults as insults. Which I completely understand as well. Retro, on the other hand, can be downright mean (much like myself) and really go at it when she is angered. Long story as short as I can make it… they have not made up, and I honestly don’t think they ever will.

Hippy has taken this loving gesture by three of my awesome sisters and turned it into some kind of rejection of her as a sister. She took a great night that I enjoyed so much, spending time with my family, and made it about her. I have missed being able to do anything because of my health so much! My sisters that came, Blondie, Retro, and Beatles (We used to sing Beatles songs at a goth club on karaoke night) took the time and effort to do this for me. However Hippy has been harassing me for two days now, venting about her falling out with Retro. I have been trying my hardest to be as supportive as I can, but I am drained. I just want to tell her to leave me alone and let me be, because her emotional issues with the family is not my problem, but I can’t. redhead-blonde-brunette-300x225 I love all of my siblings, and I can’t just push them away when they are hurting. But I am hurting as well, and I am so frustrated that a kind thing 1/3 of my sisters did for me turned into an ordeal about Hippy. I can’t understand why she would do that. Why she can’t allow me to actually be friends with my other sisters as well without feeling as though she is being thwarted. We are all adults.. I don’t get it.

So, here I am at 2am. Alone, watching a TV show that is bringing up old feelings of being lost, and losing love. Recovering from my Monday routine of physical therapy and work.. dealing with my life as it is, and feeling so anxious over others problems. I haven’t felt this alone in awhile. It’s odd because I want to be alone at the same time. Alone because I can’t stand to hear about other people’s problems that I can’t fix. Alone because I am tired of feeling like I have to constantly defend myself. Alone because I am tired of life as it stands right now.

I don’t like being lonely… but I like being alone. I like being alone because of all of the above! Because I am not missing him, but missing a life before I was like I am now. A life where I could move around. Go hiking if I wanted to. To be free to run, and jump around. To be healthy enough to drink, dammit! A am not mourning him.. I am mourning me. Over time I have realized that what I thought was lingering love is actually not love at all. It is the feelings I harbor about my life. He just happened to be there when my life started to fall apart. When my health went downhill. When I found out that I had the same illness as my grandmother, but diagnosed 30 years before she was, he was there. Only he wasn’t. He had been long gone far before that camping trip. In all honesty, he never was there. I was alone in that battle, and I was trying to convince myself that I would find the solution. That I had him. That I wasn’t alone at all, when in all reality I was. I have been so afraid of being alone since. Alone in my illness. Alone in my pain. Alone in all that I do.

download There is a difference between being alone and lonely. Tonight I am enjoying being alone.. but I am lonely. I do not want anyone to fill this void of loneliness. I want to feel the loneliness. I want to accept it. Because if I can’t get rid of this anxiety welling inside me, anxiety that is keeping me up far too late… I won’t ever be ok.

So, here I sit, now 2:11am. Trying to throw off all the bullshit I endured the last two days. How I want to be alone, and possibly stay alone. I am reminded of how selfish and hurtful other human can be, simply because others were kind in a way that they didn’t see fit. How one can attach feelings in all the wrong places. How I just want to be alone.

I really just want to be alone.

Waking Hours

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I woke up this morning to my teenager tapping me on the arm and wiggling me around. I had asked her to make sure I woke up to my alarm, as I tend to sleep through all 9 that I set. I have a hard time sleeping, but when I sleep, I sleep hard. It was 6:15am. I did NOT want to get up. Of course I moaned and groaned about it, slipping in and out of sleep, for another 30 minutes until I finally dragged my ass out of bed. Usually I get the girls dressed, get myself dressed, then do my hair and makeup with whatever time I had left. I decided that today I was too lazy to go up and down the stairs so much, so I would do hair and makeup first.

Once my eyes got used to the light, I stood in front of the mirror. Mascara smeared below my eyes from yesterday, and my hair all over the place. I washed my face, wiped all the left over makeup off that I was too lazy to address last night, and stared at myself again. “My hair is a wreck”, I thought. I had mildly wet/damp hair when I went to bed the night before, not even bothering to pull it up or deal with what it would be tomorrow. Standing there now I decided I should have rethought this. I could put my hair up in a ponytail or bun, but that would risk me getting a headache I always gets from pulling my crazy locks up. My natural hair has a lot of volume and a kind of beachy waves meets afro curls kind of thing going on. “Hair cream?”
I ran my fingers through the mess on top of my head, hanging upside down for good measure, like we have all seen women do, and rubbing in the hair cream as much as I could. Standing straight again I looked myself over. Still a mess. I no longer cared. Applying a small amount of powder to my skin, brown liner and powder to my eye lids, and a bit of mascara I threw on my glasses and headed downstairs.

There was my 7 year old, short blond bobbed hair a mess and no shoes or socks, playing MineCraft like always. I became the meanest mommy on the planet when I shut the game off without even addressing her defiance. The hair and shoes battle was mighty, but I won! On most levels. She didn’t speak to or look at me until I dropped her off in front of her school 20 minutes later. The littlest was so proud of herself for finding a purple dress that looks like a shirt and skirt, but is one piece before I had to ask her to do so. She is not allowed to wear dresses or skirts without anything underneath, and was EXTRA proud of the jean shorts she hid under the frills of the outfit. She paired it with black boots, and her adorable little curls. Her light brown skin dawned a bandaid on her leg, a few uncovered scratches, some random food on her cheek, and the typical bruising an extremely active (yet clumsy) 4 year old has. She looked like a perfect little bruised up doll!

Turning to find my own clothes in the pile of laundry sitting in a basket in my living room, I noticed some teenage angst stewing on a chair at the dining table. “I hate my fat butt!”, she told me. I couldn’t help but laugh, but I understand where she is coming from. From the time I was a young teenager I have been graced with a curvy body as well. People thinking I was 17, sometimes even 18, from the age 13 and up, I was deemed a full grown woman before I even knew how to handle that or my own body. She is no different. She complained in that awesome teenager tone about going up three pants sizes in one summer, though she has not gained that much weight. Sifting through the laundry for my own clothes for the day, I just shook my head because I know exactly how she feels, but I also know there is nothing that can be done about it.

I have been trying to complain less to people I know, though my pain levels and misery hasn’t really changed. I recently went to a new gastroenterologist who told me I have both IBS, as well as a section of my lower intestines that is damaged. I have developed both hemorrhoids and polyps on the inside of my gut which are the cause of the bleeds. HE gave me the choice to either go have the section of my intestines removed, which can cause risk of incontinence, or to do a non invasive scoping. The scoping will consist of them going in, finding an issue area and literally putting a tiny rubberband around the polyp. This will then cut off circulation and cause it to fall off. We will go in every three weeks and do this. There is slight risk for hemorrhaging, as well as infection, however it is SIGNIFICANTLY lower than if we did surgery. I obviously chose the banding procedure. So lovely.

On a positive note my leg is healing well, and I am out of the boot. I am now driving again (2 weeks!) and am in the brace. My Dr said that he doesn’t need to see me again for the break unless something else happens, or if the physical therapist thinks that I need to go back. The pain is still in my leg, and I have a funny limp now, but that might go away after time. We talked about both my right and my left leg, as I tore ligaments in both while only breaking the right. I still have stronger pains in the my ankles than I ever did before the accident, and he said that after damage like this, I can expect to have stronger pains for about 18-24 months. Sometimes the pain sticks around. It is impossible to tell. I am, however, free to return to the cycling and elliptical exercise if I wish. I can swim, walk, etc without the brace, if comfortable. I just need to cry not to trip over my own damn feet and cause another accident. Keep your fingers crossed for me.

As I sit down at my desk, I am reminded of the shoulder pain that has not gone away, and the new shoulder pain on the left side of my body. I don’t want to go see another orthopedic surgeon about my issues with my shoulders, as now I have had my ankles, knees, hands, elbows, guts, spine, neck, and shoulders addressed. The major ones causing me to see a specialist and rack up even more past due medical bills. I am just not excited to do either. I figure I will give it time to see if it resolves, and if in a few months they are STILL this bad, I will go in to see my Rheumatologist specifically. At least he will be educated enough on my body to send me to someone legit, like he did with my gastro. I hated my last gastro! Reaching for the mouse hurts. Typing hurts. Moving my arm around back and forth from the mouse to the keyboard hurts. What is new about pain, right? New pain doesn’t always equate to new symptoms, however.

I keep thinking about chronic illness as a whole. When you have a chronic illness you really have to monitor your body, food, activities, and life. It is much harder to “be up for anything” because anything could literally knock me on my ass and cause me to be bedridden for a month! I have been very good about my activity limitations, and though I want to get out there more, I keep coming up with excuses. Yes, they may be legitimate reasons, but they feel like excuses.

My leg is broken.

I am flaring.

I am too tired.

I want to use my energy for something else.

The kids will wear me out.

I can’t afford it right now.

I can’t risk getting hurt.

All of these are legitimate, but all of these can be applied to ANY situation I want to get out of. Yes, I need to be careful, but I feel like my careful has become “hermit-full” and is no longer me just trying to keep my body together. I woke up this morning, and made choices on how I was going to begin my day. I actually feel pretty decent, minus the shoulder pains. I can walk; I have a limp, but I can walk! I can drive! I can move, and get around. I can still laugh and smile! I can still be just as fun. I am still me inside, I swear it! I just need to stop making excuses.

I truly have to find some extra motivation every day. Motivation to get up, dressed, makeup, hair, etc. Sometimes my day ends up like today. Messy hair, half assed makeup, and simple jeans/plain t-shirt/tennis shoes combo. Other days can end up with a bun, others I can go to work looking like I just came from the salon. But I know my body more than I used to, and each day I can motivate myself to do what is within my limits. I choose what those limits are used for. The dishes can wait. The laundry can sit in the livingroom. The bathrooms can get wiped down tomorrow. Today I am going swimming with my kids.

I woke up today, which is more than I can say for so many who suffer from medical ailments. What are you going to do with your waking hours?