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.

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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.

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?

You’re Not Preferred..

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So here I sit. It is past 2am, I am in desperate need for a shower, and my mind is racing a million miles per hour.

My leg is almost healed, and though I am supposed to be going to physical therapy twice a week, I have yet to do so. I want to get my car back down to me (it is getting registered by my lovely mom right now since I work the hours to get it done) and then make the appointments. My ankle is still achy, and feels tight. My toes are half numb all the time, but apparently that is normal with this kind of break. Could take years to get the feeling back, if ever. I am still wearing my boot to work, but wear an athletic brace at home. I am still very inactive, and because of this I have gotten even FATTER! I am not really concerned about how I look right now, as I am more worried about getting my health back on track. I eat decently healthy most of the time, but am VERY inactive due to the illnesses/flares I have endured lately as well as the broken leg. I haven’t been this fat in over 10 years. SO strange to have my clothes not fit me again. To be the fat one waddling around the office. I am not really self conscious, because once again, I am more worried about other things. The time will come when I can be more active, and my useless piled on weight will start to fall off again. Now is not that time.. but I have been thinking a bit..

When I was thinner, just about 18 months ago, I actually looked pretty good. I was larger than I wanted by about 20 lbs, but I looked great for having 4 kids. I was then, as I am now, pretty confident in myself. There was only one problem: Him. Jeff. I remember feeling so good about myself, and often times very sexy. I would walk the halls at work, and know I was attractive. I would go home, let my hair down, wash my face and STILL feel so beautiful and attractive. Then the conversation would come up, and I would be reminded that he wanted me thinner. man-checking-out-other-woman He was interested in thinner women. I was LARGER than he preferred, “but he loved me anyway”. I have never understood the ‘love you anyway’ concept in a relationship. If you love someone, you love them how they are. You do not prefer a better version of them. Especially a version you have never seen, or maybe they have never been!! Knowing your sexual and emotional partner prefers someone who is smaller than you are, especially when going through health issues (I was two years into my dilemma) is incredibly hurtful. I remember standing in front of the mirror, tears streaming down my face, as I poked at the soft spots I knew he was referring to. I had given birth to, and fed 4 babies with my body. I was going through the worst pain and misery I had in my entire life with my health, and I wasn’t good enough in his eyes.

“I prefer…” – This can be such a crushing moment for anyone. Male or female. A woman tells a man she prefers men who are hairless; to her wolf like mate. “I prefer hairless men… but I love you anyway.” – This stands that there is STILL a preference, a BETTER version, if you will, of the person standing before them. “I prefer women with larger breasts… but I love you anyway.” – Here stands a crushed woman, knowing that he would much prefer her body be so different, instead of cherishing and loving every inch. We all have “preferences” of the kind of mate we go after, but if you are pursuing a person who does not fit your most wanted qualities, what are you doing? Now, that is not always the case. Sometimes someone is not your type, and yet you fall madly for them for the wonderful person they are. What then? Do you inform them of your preferences and let them know you “love them” despite them being somewhat unattractive to you? I know it is such a fine line to cross, but it is one that in a relationship you do not want to barge through. It has been over 15 months since we split, and here I am, still wounded knowing a man I was with did not accept my body as it was. Nor did the man before him post baby. I can’t help but to wonder what kind of men I get myself involved with that would be so unaccepting and unloving of such a beautiful thing as a mother’s body.

So here I sit, 2:30am on a Monday morning. I need to be up for work in 6 hours, and I still haven’t showered. Thinking on what my body means to me and to others. I look at my swollen belly, my oversized arms, and my “thunder thighs” and can’t help but to think what a mess they would think me to be. How judged I would be by those who I have shared my bed with. How they would likely scowl and make jokes of my current health problems.

art-SHE-fat-20130606193605324870-620x349 “She’s gotten so fat!”

“Wow! I really dodged a bullet there!”

“Ew! Look at that! Good thing I am not with her anymore! DAMN!”

“No wonder she is still single! GROSS!”

Once again, looking over my body, I can’t help to see what I am. A tough girl. A very, very tough woman. I am what I am right now, and I accept what I am. I prefer to look over myself and think:

“I live through this pain every day. My body carries a heavy weight right now, both physically and emotionally. My body is strong in all it’s weakness. I am amazing. I am beautiful. Each and every inch of me is perfect just as I am right now. One day at a time.”

I don’t look in the mirror and see my fat. The rolls on me even seem foreign and strange to me some days. What I see is beautiful me. I see a strong woman who is fighting with all that she has for herself, and her family. For her health and her love. Getting my life as collected as possible, all while fighting a painful and hard battle. I do not see someone who needs to change. I see what I am today made by my decisions thus far. I do not see someone who is unattractive and unwanted. I see a beautiful, strong woman who can take anything that is thrown her way! Anything that tries to knock her down is thwarted, and she rises. The pounds on the scale do not bother me like they did when I was with him. I weighed myself multiple times a week when we were together. I measured, sucked in, cried… sobbed even… and felt awful about myself almost daily. I was “not enough” – “not preferred” but tolerated. Waiting for me to change into the women he thought I should be, while I accepted him (Not gracefully, I must admit. I suck at relationships) just as he was. There was no “preferred” him I wanted. There was just… him. As much as he thought otherwise, I assume from his want for me to be different, I loved him as he was. Every inch, pound, hair, and big nose on him. Perhaps that is why his words of hurt have lingered for so long… but perhaps it is part of why I am what I am today. Why I can look in the mirror now and say, “Fuck that dude. You are awesome!” – And poke myself in my jiggly belly, because I know that tomorrow is another day, and everything about me today is perfect. Every flaw. Every stretch mark. Every little imperfection anyone else would see. I am me, and I am awesome.

I am Ok… Just Ok

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Today was my first day in a new office, which can almost make it feel like a new job. We have been growing so fast that it’s been hard to keep up with all the space we need. We were crammed in a small office with just enough room for everyone, and one free desk. I had the biggest desk out of all of the Account Managers, and for that I was grateful. I needed the room for training new hires at my desk, as we had one small conference room between three departments and I was often booted for random reasons. Not the easiest to work around when I need to train, all the while Sales needs to do their up-training, and then Fulfillment needs to review tasks at hand. All of who need the conference room and the projector. So I was SOL off and on for the most part, as I was the smallest training group (usually only one or two people – My largest group was only 7). In the new office I have a smaller desk, but we have SO much more space. We have combined multiple departments from multiple locations that will benefit from being in the same building and put together the new office. The location is much closer to me, and overall a better place to be. Each department has their own training rooms, meeting rooms, and extra desks for growth. And by extra, I mean half the desks are empty. We are ready for growth! I am incredibly happy about this change!

blonde-woman-driving-carOn my way to work this morning I saw a silver Infinity, and the “Horse” came to mind. Usually when he crosses my mind (especially with a visual aid) I get a twinge of hurt and regret, however this time was different. As the car passed the one way stop I was at, I thought of his face. No hurt. No regret. I didn’t get the feeling in the pit of my stomach I used to get, and I didn’t get.. feelings. Nothing. None. If anything there was a lingering indifference. I thought about my time with him, and if I would want to do that again. No. I don’t. In fact, I would be fine if I never spoke to or saw him again. I would almost prefer that I never have interaction with him again. I know it is odd to linger on this feeling, but it honestly surprised me. I have had so much going on recently that he hadn’t crossed my mind in… well… possibly a few weeks. I have been focused on other aspects of my “roller-coaster” life, my heart in other places, and my mind pulled in a million directions. But not to him. Does this mean I am free? Does this mean it is over? I sure hope so!

Once I was settled in I realized that I lacked both coffee and food. I looked around the office since we were supposed to have a coffee maker in the new break room, but alas, there was no coffee. There is a soda machine that provides free drinks, an ice machine, and two HUGE empty break rooms. But no coffee. OH! WHY HAVE YOU FORSAKEN ME!?!? Settling for soda for my caffeine intake was a battle I could only blame on myself. I generally try to steer clear of the stuff, as sometimes it can make me stiff and sore. I opted in for a Gatorade and a bottle of water with the soda. Had to wash the gunk out of my system somehow. That was the closest I was going to get.

As my day went on, my body began to shake. I couldn’t decide if it was the sugars in the soda, the Gatorade, or what was going on. I chalked it up to the lack of food, and at lunch consumed a large amount of banana/apple/honey/raisin granola with pineapple and a bit of sugar free jello. My shakes went down and I figured they would eventually stop. I worked through all my daily tasks, stopping now and then to stretch my shaking hands. Every once in awhile I would notice the full body buzzing inside my skin, and eventually the ache that came with it. Two tylenol and a bunch of water. Try to prevent the aches before they require the harder pain meds that I try so hard to keep in case of a major flare. sitting-desk-woman I am only given 30 a month, and at times I require them three times a day. Today did not seem like a pain prescription day, so I carried on! Work chatter. Laughing. Chatting back and forth. Sending each other gifs of creepy faces. Clients. Audits. Work, work, work! My day went on without much of a hitch, but the buzzing inside never left. My hands shook slightly, and sometimes a lot, depending on how I held my arm. This was odd to me, as I didn’t have enough Dr Pepper to do this to my body. I drink HIGH amounts of caffeine on a regular basis, so having it give my body an uncomfortable buzzing feeling was just not possible. Then it hit me… Fibromyalgia. My ever lingering illness! Hiding just below the skin and waiting for the chance to remind me who is really in charge!

I often forget about some of the symptoms that don’t linger as often. This “buzz” or “tingle” is one of them that tends to come when I have high pain, so having it come without pain first is weird. My Dr recently started me on a new arthritis medication, so perhaps that is what is going on. Maybe it is helping with the pain, but the “buzz” from the fibro is still there. Lingering. HAUNTING. Being a pain in the ass, to put it bluntly. But what caused this buzz? I hadn’t done anything different, minus the lack of coffee replaced with soda in the morning. Once again, it hit me. We are in an new office, and the lighting, air, and all of the components of my day to day environment had changed. This can often set off a Fibro flare, and cause symptoms to arise. Sensitivity to the light change could even cause the ridiculous feeling I was having. Reviewing online I found that I was right in my assumptions. Now, just to cut in – I know that I have been like this for a few years, and I should know my symptoms by now, but it is so easy to assume or remember incorrectly. I like to double check my assumptions if I am not 100% sure I am correct. Sometimes my symptoms are a warning sign for something bigger coming, and sometimes just a reaction. I like to review and update myself on the differences, as it keeps it fresh in my mind. Never can be too careful when you have so many different things going on inside you.

Fibromyalgia2 Fibromyalgia is a syndrome of chronic widespread muscular pain, achiness, non-restorative sleep, and severe fatigue. The genetic component present in Fibromyalgia negatively affects the brain’s ability to process pain normally by altering the pain threshold. It is not uncommon to find hypersensitivity to touch, heat, cold, chemicals, light, sound, and smell. In Fibromyalgia this translates into pain. If genetically predisposed, a trigger usually occurs to initiate the disease. Subsequent triggering mechanisms such as accidents, trauma and or stress may increase symptoms. The good news is that Fibromyalgia is not fatal and can be controlled with proper diagnosis and a wellness regimen.

Yes, just a reminder that even changing offices can cause a flare. Isn’t it funny how I can be so pleased over such a positive change, all the while my body is throwing a mini tantrum? Where is the time out corner for my immune system? No fits allowed! I decided to just settle in and deal with my buzzing, plugging my headphones in and shutting out the world. The sounds of the more open office space may have even triggered this odd flare. There is a cooling vent directly above my desk, and I kept going back and forth between freezing and burning hot. No temperature control as well. Oh, body! You are such a delight! I sometimes forget the symptoms that I can get, and ones that others suffer through daily. Though I am in pain daily, I am also lucky to still be well enough to work. To even sometimes be able to plug in, take some tylenol, and shut out my pain. Others are not so lucky. Some of the symptoms that people suffer through daily are:

  • Sensitivity to medications and foods (often lactose intolerant)
  • Sensitivity to odors, sounds, and bright lights
  • Early morning stiffness
  • Tender points (see diagram)
  • Trouble finding words
  • Burning mouth or tongue
  • Decreased concentration and memory
  • (creating “Fibro Fog” read definition)
  • Anxiety
  • Depression
  • Numbness
  • Tingling
  • Sensitive Skin
  • Chest pain
  • Shortness of breath
  • Dry eyes
  • Muscle cramping
  • Muscle weakness
  • Regional Muscle pain
  • Myofascial Pain disorder
  • Sensation of vibration
  • TMJ
  • Headaches
  • Generalized weakness
  • Weight gain
  • Sensory overload
  • Exhaustion after minimal exertion
  • Swollen extremities or sensation of swelling
  • Special instability and perceptual disturbances
  • Immune system dysfunction
  • Irritable bowel syndrome
  • Irritable bladder syndrome
  • Hypoglycemia
  • Diminished stress tolerance (emotional and/or physical)
  • Unexplained bruising
  • Low Blood pressure

  temporary-bump-sign.ju.09 Though I suffer from over 90% of these symptoms, it could be SO much worse at the end of the day. After work I stopped at the grocery store to buy a bag of potatoes and a box of ramen noodles. (As requested from my teenager) I made it into the store, grabbed both items, zoomed through the self checkout and was back in my car within 5 minutes. As soon as I closed the car door I realized I was having an asthma attack and was shaking twice as bad as I had been all day. Grabbing for my inhaler, I leaned back and took it all in. Sweat poured down my face, though I had the windows open and a cool breeze whistled through the car, I was sweating. My hands were shaking and I felt incredibly weak. Getting the focus to drive the short few blocks to my house, shaking and sweating the whole way. Once home, I jumped out of the car and hurried myself into the house, telling the teenager she needed to retrieve the items from the car.

Here I am two hours later, still shaking, but now I am freezing. Covered in a blanket, blanket on my lap, shaking and freezing my ass off! My children in tank tops and shorts, the temperature the same 70 degree it always is, but I can’t stop shaking.

At the end of the day, today was actually pretty decent. Though I felt like my body has not been at rest at all, it has been so much worse before. I realized that my feelings for Horse have left. I have a good job with a nice new office, though Fibro flaring, I am sure it will pass. I have a home, and kids that love me. And as the Beatles say, “All you need is love..”, right?

I am ill. I am limited… but I am ok.

The More You Know… First Time With The Rheumy

Standard

I finally saw a Rheumatologist last month, and I have to say that it was a bit different than I expected. I have heard of him before, as I happen to work with his son, and was excited to find that the recent switch of Insurance providers at my place of work allowed me to see him now. Prior to the switch I had been avoiding seeing a Rheumatologist due to the nearest one that took my insurance was an hour drive. I had been in basic denial of really needing to see one, and this just made it easier to justify. As my illness has progressed, and the fact that I have yet to recover from the bronchitis I happened to acquire in February, I knew I had to suck it up and actually see this through. It is better to know exactly what I am dealing with, or at least work on finding out more about my body. Maybe then I can get more answers about how to deal with this.

When I arrived, they were all incredibly polite and professional, but in a casual way. I was not handled with “kid gloves” like my physicians, and I wondered if it was due to the fact that they are used to dealing with the elderly. As much as people would like to think that the elderly are fragile, it is generally going to only be their exterior that has so many “soft spots”. I find the elderly to be quite entertaining, and much more friendly than the average person thinks. taking vitals I get along with people far beyond my years, which I chalk up to me being a young mom (Age 15 – So smart) and suffering through “elderly” diseases starting at 26. I had my vitals checked, and a quick exam which caught a temp of 99.9 – Which is my temp almost EVERY time I go to the Dr. I run an elevated temp daily, and had to tell her it was ok and normal for me. She seemed both amused and concerned that I was so nonchalant about a temp that generally implies some kind of virus. Autoimmune illnesses are fun. Sudden fatigue and constant fluctuation in temp. WAHOO!!

Since I had injured myself just a few days before, I was limping around with a colorful sock over my not so sexy bandaged ankle. This did not go unnoticed by my Rheumy, but he just laughed it off after I told him I got into a fight with a small rock, and the rock won. “I fought a rock and the rock won.” He introduced himself, and we started in with the casual conversation about my process it took to get to him. The wall I initially hit after eating lunch one day nearly three years ago. Being bed ridden for a solid week, and running a temp of 99.9 for three months straight, no break even with meds. The physician, gynecologist, orthopedic surgeon, gastroenterologist, the works. Surgeries, tests, missed work, symptoms, medications, MORE medications, MORE symptoms, etc. He sat and listened to all of my woes, and asked questions as I went. He went further and further into my history, asking questions I hadn’t even thought of. How many bones I broke, if I had ever been limited physically for any reason before I got sick, and other random things. Oddly enough, he made me realize that I had been systematic for YEARS before I even hit that wall, but I wrote it off as other issues. It easily could have been other issues, and wasn’t necessarily something to be alarmed about, but once it started to randomly cripple me I should have looked over my personal health history much deeper. Well, a little late for that but at least we are doing this now.

cos-01-young-woman-doctors-office-hospital-gown-de1 He left the room to allow me to change into to a hospital down, and when he returned started the exam. He checked some pain points in my arms, checked the movement of my joints, extremities, etc. He winced in certain places, letting him know the level of pain, but when he got to my back I couldn’t help by cry out when he pushed closer to the small of my back. I have a large area there that can get incredibly sore when I am having a flare. Still having symptoms from bronchitis and having a torn ligament in my ankle had caused this area to go haywire! He ended the exam short, and ordered quite a few xrays, ultrasounds and other tests. He told me that he can confirm the rheumatoid symptoms, as well as the fibromyalgia. He wanted to likely change my treatment, but wanted to wait until all the tests came back. He was concerned I might have some disc issues in my spine which could be causing the back pain. Then again, it could be fibro, but generally if it’s that I would have the severe pain across all my pain points and not just in the back. We would have to wait to find out, but in the meantime try to be nice to my body… and steer clear of small rocks. Who knows what might happen. LOL

Let’s fast forward to the follow up that occurred three weeks later. Wander in about 15 minutes early. Temp taken: Only 98.9 this time. Sweeeeeet. Not really having a flare up, as my ankle is mostly healed with just a few pains here and there. Bronchitis still hanging around, but mostly just an ugly cough and some breathing troubles. The weather here has been so flaky that I doubt I will be clear of this mess any time soon. This time I waited in the exam room for about 25 minutes, and I just assumed that he hadn’t really looked over my results yet. I had looked over them multiple times in my online interactive office. I read through my bloodwork, but my xrays and ultrasounds were not available to view. In my bloodwork there was indication of high inflammation, which I found weird because I was on Meloxicam. This is a high does of anti-inflammatory and should keep it under wraps, and definitely not outside of the safe zone. Then again, bodies like mine like to be assholes and do whatever they want, which includes getting inflamed for no REAL justified reason. Thanks, body.

Going over the xrays he showed me where I was having issues. Both hands have just begun to really feel the effects of the rheumatoid. Both pinky fingers and ring fingers have lost all joint space between the bones. The pain in my arms and hands can be accounted for there. Rheumatoid-arthritis-of-the-hands-X-ray-2354547 My thumb, pointer, and middle fingers are actually being effected by osteoarthritis, and are not really showing signs of ra yet. He showed me on both the xray and a chart what the differences were, and though at the time I could spot them with his guidance, I can’t tell the difference now. I am sure as time goes on and I monitor my TWO different kinds of arthritis I will learn to spot the differences on an xray. For now, I have been trying to practice on Google images and try to educate myself. As per my back, the discs are firmly in place, though I have a very strong arch. Most people have a mostly straight spine, with a few very natural curves like a very soft curved road. Mine on the other hand is mostly normal, until you get to the waist area. At that point my spine curves slightly right, in and then back out like a loose backwards C. You can see exactly where I broke my tail bone as a child, and really explains why I can’t get rid of my big butt. Apparently this isn’t an issue, as all my disks are still in place, but mixed with my DD breasts it can cause quite the back pain. However, not the back pain I am experiencing. That is ALL fibro, baby!

We went over pockets of fluids in my arms, knees, and other areas of concern. Shots that will get rid of them slowly, and medication changes that will also help. Changing from meloxicam over to generic Voltaren 75mg twice daily for the inflammation. He would like to steer clear of steroids for now, as I tend to have the worst reactions to medications. This one is going to be softer on my lower intestines, and should help with both the fibro and the arthritis. Once we addressed all my illness issues, he brought the xray of my neck to attention. Not only was my neck too straight, it actually curved in the wrong direction. The supporting ligaments had been damaged, and the disks between the bones were almost completely gone. The disc between the C7 and T1 was obliterated. Done for. Gone. He started asking me about accidents I may have been in… care wrecks, other things. I looked away like I was thinking, and kept telling him I had never been in an accident. He danced around the subject asking if I had ever taken a hard fall and hit my head, or anything else. I sighed and finally said, “I was in an abusive marriage.” We went on to talk about the blows to the head, the concussions, and other things that could have destroyed my neck the way it was. He apologized for pushing me to talk about it, but it was medically important to know what happened to cause the injury. He said based on my xrays he had assumed abuse, but did not want to push the subject in case he was wrong. I figured he saw the broken collar bone, and ribs. The issues that arose from being married to such a big man. We went over the treatment of heat every night, continue with my muscle relaxer but taking it nightly until we get the swelling down, and see what it does for me. h-UPSET-WOMAN-AND-DOCTOR-960x540 The new meds for the arthritis would help with my neck as well, but I will never be able to fix my neck without surgery. He closed the conversation with, “It is a good thing you divorced him, and such a shame that he left you with something to remember him by.”

After getting the shots in my arm, and almost FACE planting while getting out of the chair, I went back to work. The feeling of relief, pain, and hope was overwhelming. I kept thinking about how it is good to know what is going on, but upset that what I went through in my marriage really did destroy parts of me inside and out. Literally. Emotionally as well. I tried not to think about it, and just focus on what I was going to do with the new information. New treatment, new hope, and another appointment a month from now to follow up. I learned nothing new about my knees, but felt much more educated on my body in general. Now I know what is going on in the places that hurt, and I begun going through it in my mind.

Feet: Rheumatoid arthritis

Knees: Osteo and rheumatoid arthritis. No cartilage from damage. Fluid pockets. Inflammation.

Abdominal pain: Celiac, and ovarian cysts. Inflammation from both.

Back pain: Spine curve.. big boobs. Yay. No inflammation.

Neck pain: Damaged to the ligaments and discs. Little to no inflammation.

Shoulder and upper arm pains: Damage to the right from injury, fluid pockets and inflammation.

Elbows: Irritation from both the shoulders and the hands. No inflammation.

Hands: Osteoarthritis and rheumatoid arthritis. Inflammation.

Jaw: TMJ. No inflammation. Possibly from Fibro.

Full body muscle/muskoskelital pain: Fibromyalgia

Stomach ache: Gastrointestinal damage.

Bleeding from anus: Colon and lower intestinal ulcers and internal hemorrhoids.

Going through all of my body, and my daily pains I was brought back to realize how miserable I really am. I often feel bad for being so inactive and feel so lazy! Being reminded that I actually am sick, and I really do need to rest myself until we figure this out. sick-in-bed I need to count my spoons and stick with them! Pushing myself only makes it worse, and can prevent me from actually doing the things I need to do for myself AND my family. People who end up with chronic illnesses are often left feeling guilty, and need to find a way to cope. We can’t help but watch others walk around, enjoying their bodies, and end up feeling both jealous and resentful. I tend to go back and forth from “I GOT THIS SHIT!” to the “What is wrong with me, why can’t I handle this?”. Though it may seem like such a bi-polar way to look at things I have come to realize that it really is natural, and I really will always be this way. Now, will I always be on the low side of my roller coaster? No. No way. Sometimes the roller coaster may even stop on a high point, and I will get to enjoy and consume the wonders of the world with a big grin on my face! But I am never going to get off this roller coaster. It is my life now, and it is what I have to deal with.

Getting more info on your illnesses are really both enlightening and pleasing, as well as hurtful and depressing. Knowing my hands are just going to get worse, and my body is going to slowly break down is not fun. Knowing how to slow the process, and take care of myself so I can handle and live with my disabilities is a good thing… but I don’t want to do it. I WILL, mind you, but I don’t want to. I don’t want to try new meds and have to learn and handle the side effects. I don’t want to have to remember that my headaches and neck pain are from a man I left a little less than 10 years ago, and that I will always deal with it. I can lessen the pain, and help with the inflammation, but it will never go away. Once again, told I am sick forever at age 29. Three years in. Single mother of 3 girls. Full time working mom. Sick. Forever.

Well… now I REALLY know, right? *sigh*