You Should…

“That’s still going on?”

“Have you tried…?”

“Have you seen a Dr?”

“You should talk to your Dr about that.”

When you have a chronic illness, you have heard these remarks, and they get old fast. We have all held our tongues; smiled, nodded, and agreed. Even thanked people for their help and input. None of these are helpful in the slightest, as I know my body, and when things are wrong I will go see my Dr. A low grade fever for three days is not a Doctorable offense. New liquid filled cysts, and lumps in uncomfortable places is not something to rush to the nearest ER about. Ever woken up in a pool of your own blood? I sure have, and did I rush off to my Dr? No. Because the color, consistency, and amount did not qualify as something that I personally need to rush off and spend my hard earned money on another, “Just keep taking your meds, and try not to push yourself that hard again. If the bleeding blah blah blah blah!” Heard it all.

This has been another rough week for me, as I am sure you could have guessed by my last blog post. I have run fevers, thrown up, bled from every possible orifice that can bleed without threatening death, and woke up in so much pain, it took all my might not to scream at the top of my lungs. I have left epsom salt bath water black, had less than 20 hours sleep in the last 6 days, and have been popping pain meds left and right. massage-picture-fibro I called in an emergency 90 minute massage due to my muscles being SO tight, I could barely turn my head. I was an hour late to a date, which did not go so well. (He was religious, had no kids and wanted some. I am none of the above.) I have been late to work every day this week. Missed appointments. Forgotten about trainings. Etc. I can’t help but feel like such a failure some weeks, and though I am STILL going strong, I do feel a bit like a failure.

This week I got into the worst fight I have ever had with any of my siblings. My sister, who we will refer to as Delusional Hippy, got on my very last nerve. She has been poking at me for awhile, and I finally had enough. The worst part is that she doesn’t realize she is doing it. She comments on my photos, statuses, and other such social media outlets with such cruel implications hidden in innocent text. She recently implied that in order for me not to end up alone I need to lower my expectations and standards for a potential spouse. Also, there is a possibility that I will never find someone and will end up alone. She told me I needed to be ok with the possibility that there isn’t someone out there for me. O_o She said, “You seem to think you are incomplete without a man.” – Now, keep in mind that this is my sister who is married to a convicted felon who used to harass me about having sex with him. He pursued me for about 8 years, starting when I was about 13. Not a big fan of this man. He is currently in prison for the 3rd time. DH has not dated much, and is often described as ‘homely’. I am not going to toot my own horn, but even with the extra weight, skin problems, and chronic illnesses, I am still quite the looker. It is hard for me to even fathom that there isn’t someone out there who wants what I want. There is nothing wrong with wanting a family, and that doesn’t make me desperate or incomplete. I have a goal of sharing the love I have, and making a life for me and my girls. My sister and I had a blowout. With-physical-pain-you-can-pinpoint-a-problem-and-seek-the-appropriate-treatment-as-with-a-wound-or-a-broken-bone-but-it-is-vastly-more-difficult-to-pinpoint-the-cause-of-emotional-pain. I blocked her on 3 facebook accounts before she went to texting. One thing anyone who knows me understands is that if I want to be left alone, you back off. You let me be. She knew this, and pushed me to my brink. I snapped, and I tore into her like there was no tomorrow. It did not go well, and I have been sick ever since. Extra sick.

People tend to forget that emotional turmoil is also going to have a negative effect for the chronically ill. Stress causes so much pain, it is ridiculous. I broke out with 17 cysts, ranging from the size of a pea to silver dollar. Arm pits, face, neck, legs, etc. They are everywhere. Here I am emotionally and physically ill over something as silly as me being alone and sad. Being judged by a woman who is neglectful of her children, and needs of everyone but herself and her husband. She is inconsiderate, and rude, however I have always brushed it off as her personality. She is who she is and you take it with a grain of salt. I have always loved and supporter her in all her decisions. Want to marry a felon I am not really fond of? Ok. Still love you, keeping my mouth shut. If he makes you happy, and you are confident in your decision, who am I to tell you otherwise? Want to ignore the fact that your children only snack all day, every day and do not have a full nutritional diet at home? Ok. I expressed my concerns, she brushed them off. I watch my niece and nephews, and make sure they are properly dressed for the weather and eat when at my house. She is not physically abusive, and her children love her. I will express my concerns when they seem applicable, otherwise I will respect her parenting ways. It is not my direct business, and she is allowed to run her home as she pleases, just as I am. But when you step in and tell me that because of my VALUES, and my STANDARDS, I am going to be alone. As if someone of that caliber would never have interest in someone like me. How dare you?

“You are always sick. You seem sad.” – Of course I am sad! Being sick is sad!

article-2218035-1583EAED000005DC-685_634x423 “You know that a man won’t fix your illness.” – I am aware of this. Nothing can ‘fix’ my illness. But I want to share what I can with someone, and show my girls that love can blossom out of the worst of situations. Also, I think that it would be a lot easier to make it up my stairs when I am super sick if I had some nice big arms assisting me in my journey.

“You need to understand that marriage has ups and downs. It’s not all good.” – What. In. The. Good. Hell? Are you kidding me? Please.. just… I am not even going to address this one, as this is just a joke that as a divorced 29 yr old woman who has been in MORE of a married relationship in the last 2 years with a man I never lived with than she has.

So, here I am…. sick, tired, and getting unwanted advice on not only my health, but also my love life. Basically feeling like those around me feel I am unable to properly determine when I need to see a Dr, or how to care for my own broken body. Nor am I capable of creating a happy marriage one day because I have high standards, and I am too sick to expect someone of that caliber to be interested in me. Perhaps I should lower my expectations and marry a felon. Seems like someone like that might ACTUALLY be interested in me, and fill that empty part of me that is ‘incomplete without a man’. Because, you know.. I am not complete without a penis, but I should probably accept that it is likely I will never find one that will put up with my shitty life.

Umm.. I may or may not be bitter this week, and angry. Sitting at the front desk in such pain I am thinking it would be better to be numb from the neck down. My head is throbbing on the right side, vision is blurry, and my right index finger is swelling. I am not sure if the emotions caused the flare, or the flare caused the emotions, but either way it is shitty. Either way this week was awful. I can’t take the pain meds that would kill this pain, as they will knock me out. I am beat, and I have an entirely full weekend ahead of me. This is not a good mix…

I apologize for this blog. It is crazy, all over the place, but I needed to vent. Thank you for not judging the crap out of me.

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Inside Out…

Tonight is one of those nights that I am feeling the weight of the world on my shoulders. It was my youngest’s birthday, however we had her party over the weekend, so nothing truly special went on. She got to pick what we watched before bed, and I let her have cake for dinner. Four year olds love cake for dinner. I let it slide. However, that is not why I am feeling low. I feel down due to another reminder of my painful reality. The reality that is inside me, that controls the world around me. The broken, damaged, and corrupt inside.

I had little to eat today, as I had over done it over the weekend and caused myself so much intestinal pain I could barely move yesterday. I ended up with intestinal bleeding again, and this meant for multiple trips to the bathroom. There is something so depressing about such abnormal things becoming such a normal thing in my life. Excessive bleeding from any orifice should (and would) be alarming to the average person, but to me it has become a common thing. This has been happening more and more with me, and any time I over do it in any way, I begin to bleed. Work. Playing around with my kids. Lifting, moving things. Anything that involves exerting myself causes my to bleed. This is nothing short of depressing, and I can tell you that tonight I am feeling it.

This morning I was not only bleeding, but I was also quite swollen. My eyes were puffy, my fingers the size of sausages, and my arms were splotchy from the pressure of the edema. I noticed a new cyst on my nose, and the remains of the cold sore that broke out over night, and took over what feels like my entire bottom lip. It hurts to move, to eat, to even speak, but off to work I went. sleep_disorder I did consider not going into work for a few minutes, but reminding myself that the woman who runs the Human Resources has an odd vendetta against me and without hitting my 40 hours in a week, she wouldn’t think twice about pulling my insurance out from under me. SNAP! My impression of that awful woman yanking away the only thing keeping me afloat at this point. I understand that it is a technicality, and she isn’t completely responsible, but she is a very cold and harsh woman, thus causing the very thought of missing work and having to deal with her more unbearable than dealing with the pain. Put on a smile, and get out the door! A little extra makeup will cover the bags under your eyes, and the new hair color will mask any other possible changes that are noticeable.

I was right. Nobody noticed, and it is not as if I want them to. I know I am a downer when I talk about my illnesses. I know I am a downer when my 10 bottles of pills fall out of my purse at work, or I have to take my pills at my desk. I know people look at me and think, “What a hypochondriac.” I don’t think people realize what it takes to get up every day and do this. To put a smile on my face. To get myself, and two other people prepared to face the world each morning; To get in my car and actually make it to the three locations I must hit before work. I don’t exactly want them to, but I also don’t want them to look at me and think that I am ok. I don’t want either. I don’t want to be looked at differently, but I don’t want my struggles to be brushed off.

Tonight I am feeling heavy. Sad. Fuck it, tonight I am really really sad and I very much hate this body I am living in. Tonight I can feel the pain all over. I can feel the sores, I can feel the muscle pain, I can feel my insides fighting against my entire body. I CAN FEEL THE DECAY.. and it is making me very sad. Very, very sad.

I am sad inside and out.

Thief

Chronic illness is a thief. It takes from those who suffer many, many things. It can feel as though your whole life has been taken away from you. Your loves, hobbies, and often times your happiness. One of my hobbies that I love so much is photography. I used to take photos of everything almost daily. The world around me, my children, myself. Everything that I love, I would capture piece by piece, image by image I would take stills of my days so I could remember these moments forever. The last few months I have been so sore and stiff that I have not been able to do photography as much as I used to. There are many times I look around and I think, Leaf in rain “This is beautiful! I should photograph it!” But this means opening the clasps of my camera bag. Taking the protective caps from the lens, and the camera. Putting the lens on the camera. Adjusting the settings. Then I am ready to take a photo! This sounds like maybe 15-30 seconds of work, which would be accurate for the average person, but when your hands hurt and your joints are stiff, this takes much longer. Not only does it take longer, it hurts. I use my hands all day for various tasks. Zipping sweaters. Buttoning pants. Tying shoes. Then I get to work and I type, click, and navigate my computer. It doesn’t seem like much, but my hands can hurt and ache by 10 am.

Today is a dark and rainy day. My whole face hurts, to the point that it even aches to move my eyes. My hands, feet, elbows, and knees all feel like they have been stabbed and prodded with a screw driver. Long story short: I am in pain. But looking outside… it is so beautiful. I love the rain! I love what it does to the world, and I wanted to capture it! I decided I was going to ignore these pains. That I am going to take at least ten minutes outside and photograph this dark, dreary, beautiful day! The following images are creations from me. These are the result of about 10 minutes outside in my parking lot, and another hour or so of picking up and putting down my laptop for editing. I hope you enjoy them as much as I enjoyed taking them.

Leaf on gravel

Reflection of my house

Greasy Water

Forgot to Publish

This is a post I started last night, but never posted because I was in so much pain, I had to put the laptop down and curl up.

This post is going to be short. I am in pain. All day my body has been in pain. My ribs, my intestines, my knee, my foot. It hurts all over, and I can’t seem to get it under control. I have popped a few pain meds, taken my anti spasm medication, and rested. I am almost 100% convinced that I was glutened. My kids have been getting sloppy again, and started leaving yucky crumbs and foods all over my house. I can’t help but think that I consumed at least a little bit of gluten and caused a flare up. Of course, there is no way that I can miss work tomorrow, or at all any time soon. I need to work at least 40 hours a week in order to make the cut for my insurance, and I will lose it if I start to “slack” off. two-part mono cutout for pix daily tues I also have two trainees that start tomorrow, so missing work isn’t an option at all.

The more I get to know about fibro, the more questions I have. Is this fibro for sure? Is the RA and celiac from the fibro, or the other way around? People with fibro often get different forms or arthritis, and also have a hard time processing gluten. I am never sure what is and is not going on inside my body. All I know is that I am in pain. I know it hurts to be touched at all sometimes, and this sucks beyond explanation. At least a few times a week I am uncomfortable ALL day. The clothing on my body will twist and pull, and sometimes feels like it is trying to rip into my body. My head hurts daily. My arms, elbows, knees. There is never FULL relief. I have been in better control of my emotions, and yesterday was spent laughing the entire day with my girls. I felt like crap, but I pushed through it and played with my girls. I let them know my limits, and they kept to them. Then today.. today has been awful. At one point, I was concerned that something was going to burst inside me. The pain and pressure was overwhelming, and I could no nothing but sit and be in pain. I took some of my pain meds, but they are for nerve pain, so the intestinal pain did not really subside. Now all I can hope for is getting into a comfortable position and get past this pain.

Pity Party For One

Warning: I am going to share too much personal bodily function information in this blog.. so.. read at your own risk.

Today I am having a pity party for one. It is like a college frat party; vomiting, blood, disorientation. Everything but binge drinking and sex. Right now I am sitting in my living room watching “Orange is The New Black” and recovering from my most recent trip to the bathroom. Two nights ago I let a friend of mine cook me dinner, and take me to a movie. It was quite good! I checked the labels before he seasoned the steak. I double checked the labels of the sauces, of the dressings, of every last thing I ate! Yet, low and behold.. here I am. Day two of everything I eat coming out both ends. Gross, but true. I don’t have the heart to tell him, so he has no idea that he is the reason I am so sick. So I am having a pity party for one.

knee-pain-329x390Tuesday afternoon I went to see my Orthopedic surgeon. He let me know that there was quite a bit of damage behind both of my knee caps, and gave me a shot of cortisone in each. I can’t really describe the feeling of pressure and burning inside my knees that stemmed from these shots. I am in constant pain from the RA that I suffer from each day, which I treat with a variation of pain killers and anti inflammatory medication. Since I was aware that I would be driving, I decided that I shouldn’t take my medication, and would take it later. Long story short: Those shots hurt like fucking hell. I can barely walk, though the general pain has let up, the new pressure and discomfort (because so new) almost feels worse. So I am throwing a pity party for one.

Now here I sit.. knees full of cortisone, intense pressure, vomiting, diarrhea, full body aches, etc. Every time I vomit, my nose bleeds. Every time I use the toilet, it burns and I bleed. My food is coming out both ends. Blood coming out both ends. I am alone in my destroyed house, having a pity party for one. I am exhausted, sore, sick.. and bleeding. The weather has changed, and this causes my body to ache, due to irritating my RA. I accidentally ingested gluten, which caused horrible intestinal pain, and an RA flare up. The irritation and pain has raised my blood pressure, causing additional bleeding from my nose and my ass. I am due to start my period in the next few days, which is also exacerbating my intestinal pain, and will be more bleeding. So I am throwing a pity party for one.

4638308180_ea772ba8e0_mA pity party for one under the blanket my daughter was given during one of her many surgeries at Shiner’s Hospital. I am going to assume that due to the blood loss, and my body trying to keep up with everything going on inside is why I am freezing. My toes are cold, my fingers are numb, and I can’t keep from shaking. It has taken me over an hour to write this blog. Not due to a lack of knowing what to write, but because I have to physically stop typing and rest every minute or so. I have had to get up twice to express food and bleed.

So I am throwing a pity party for one.

I miss him

Today I have been feeling very sorrowful. I had bad dreams again last night.. all about Jeff. I don’t know what is going on inside my head, but I can’t seem to get him out of my dreams. Every time I close my eyes and drift off to dreamland, there he is. Taunting me. Loving me. Hurting me. I wake up with horribly mixed feelings, but one overtakes the rest. Sorrow. The loss of someone I love. Loved? No.. love. I don’t think I will ever stop loving that man, regardless of what goes on in my life. Do I want to see him? No. Not yet. Do I want to talk to him? Every minute of every day.. but I can’t. It is not the right time, if ever it will be, I don’t even know.

120102074341-woman-belly-fat-alzheimer-s-black-white-story-topMy whole body was swollen today. I woke up at 7:15 this morning, exhausted and so puffy, I almost didn’t recognize myself in the mirror. I slipped my night clothes off, and stood in front of the mirror. This is the biggest I have been in about 8 years. My whole body is bloated, swollen, and fat. Underneath all of this blob, I know I have a lovely body. I remember how my curves feel. I have a great shape, smooth skin, and the color of the skin hidden by clothing is milky, and silky. But this.. blob.. I am right now. I don’t even know who that is. I stood there for at least five minutes, examining myself. Red blotches all over my belly, chest, and arms. What a lovely side effect of being me right now. Sores across my shoulders. Black circles around my eyes, and lips too puffy for my liking. My cheeks are like little baby cheeks, but stiff and itch. My toes aren’t touching the floor, though my bulbous body is pressing as hard as it can. I can barely even open my hands, and as I look down I can see they are purple and white. This is my life now.

As I went on with my day, trying to ignore how I was feelings (both physically and emotionally), I realized something. It is ok to still love Jeff. It is ok to worry about him. To hope that he is ok, even though I am still so hurt, and the thought of him with someone else makes my ache in a way I never knew before. I don’t want to be with him anymore, but I do love him. I love his kids. His strange, quiet, emotionally withdrawn kids. I miss their little faces. I miss the random questions and comments. I miss waking up to them, making them pancakes, and playing kitchen. I miss them. I miss him… and that is ok. There is nothing wrong with loving someone, even if you can’t be around them anymore. My sorrow for my health is ok. My sorrow for Jeff is ok. I just need to get up every day, and carry on. I need to keep going, keep pushing myself, keep trying to get better. I need to let go of the bitterness, and just let myself feel the love. If he is happier now, who am I to be upset about that? Don’t I want him to be happy?

bald-man-bedDo I want Jeff to be happy? Yes. Very much so yes. Does it hurt to think of him coming out of his depression for someone else, when I longed for him to come to light with me? Yes. But you know what? How he comes out of it should be irrelevant. It just matters that he does, right? I would love to see him down the road when we are both healed and see him happy. I have seen flashed and glimpses of a happy Jeff, and it was wonderful. I can’t get his smile out of my head. I can hear his laugh, and it is so bitter sweet. I can’t help but wish I could share my day with him. Tell him about all the silly things going on. That my old boss got fired. That our retention rates went up 10%!! That’s HUGE! I know he would be so proud of me, and would be genuinely happy. I want to hear about his calls. Hear the funny stories about his kids. I want to talk to him about everything.. but I can’t. All I can do is dream. Blissful dreams.. nightmares. Happiness. Pain. Love. Anguish.

I miss him.

Hypona.. what?

The last week has been such an up and down roller coaster for me, it’s been insanity. Just a few days ago I posted about my Dr’s visit, and what they had discovered. I have since made an appointment, and my blood work also came back. I was quite surprised at the results, as I have never heard of the cause of my back/kidney pain. Hyponatremia induced edema. A sodium deficiency that is causing full body swelling.

Wait. What?

That’s right, I am low in salt. Let’s define this:

Hyponatremia (American English) or hyponatraemia (British English) is an electrolyte disturbance in which the sodium ion concentration in the serum is lower than normal. Sodium is the dominant extracellular cation (positive ion) and cannot freely cross from the interstitial space through the cell membrane, into the cell. Its homeostasis (stability of concentration) inside the cell is vital to the normal function of any cell. Normal serum sodium levels are between 135 and 145 mEq/L. Hyponatremia is defined as a serum level of less than 135 mEq/L and is considered severe when the serum level is below 125 mEq/L.[1][2]
Many conditions including congestive heart failure, liver failure, kidney failure and pneumonia can have an associated hyponatremia. It can also be caused by overhydration from drinking too much water (polydipsia).
In the vast majority of cases, hyponatremia occurs as a result of excess body water diluting the serum sodium (salt level in the blood). Lack of sodium (salt) is very rarely the cause of hyponatremia, although it can promote hyponatremia indirectly. In particular, sodium loss can lead to a state of volume depletion (loss of blood volume in the body), with volume depletion serving as a signal for the release of ADH (anti-diuretic hormone).[citation needed] As a result of ADH-stimulated water retention (too much water in the body), blood sodium becomes diluted and hyponatremia results.

salt-reduction-strategies-low-saltMy sister asked the one question that was to come spilling out of everyone’s mouths (in various ways, of course); “How, as an American, can you be low in sodium?” Exactly. How can I be low in sodium. I eat a lot of salty foods, which I thought was bad for me, and I was planning on cutting back. In fact, when I told my Dr (and showed him) the swelling, he suggested I cut back on my salt intake, possibly almost completely, as during the summer that is what causes edema. In most cases. Come Monday morning when the labs came back, he was signing a totally different tune, and cancelled all my diuretic prescriptions he had recommended just days before. What does this mean for dear me? Well, it means I am to decrease my water intake, and up my salt intake. Ok… Well, the last few days I have found it to be easier said than done.

I am a big fan of salty foods, but when you have to limit your water intake AND up your salt intake, it can get quite frustrating. Have you ever eaten a bunch of corn chips, and then had that odd feeling in your mouth afterward? Almost a burning sensation as you can feel the salt drying up your saliva. Yeah.. I need to drink less than 34 oz of water a day, and have as much salt intake as possible. My levels are at 135, which is just at the peak of danger, however all of my other stats are on the low end as well. This puts me at risk to drop very quickly, which is acute hyponatremia. Let’s take a look at what that does!

In chronic hyponatremia, in which the blood sodium levels drop gradually over time, symptoms are typically less severe than with acute hyponatremia (a sudden drop in blood sodium level). Symptoms can be very nonspecific and can include:

headache,
confusion or altered mental state,
seizures, and
decreased consciousness which can proceed to coma and death.
Other possible symptoms include:

restlessness,
muscle spasms or cramps,
weakness, and tiredness.
Nausea and vomiting may accompany any of the symptoms.

Hmmmm… So, we may not know that my sodium levels have dropped dangerously low until I have a seizure, go into a coma, and die? Sweet.

stock-footage-sad-girl-sitting-in-the-middle-of-incredibly-dirty-beach-destroyed-nature-depressed-young-womanNow, I know I am being dramatic, but let’s look at the bigger picture here. I am 28 years old. I have 4 children, the oldest is 13 and the youngest is 3. I take care of 3 of them myself, and they all have different dead beat dads. I have been sick for over 2 years now. In and out of Dr’s offices. Back and forth from symptom to symptom. Treatment after treatment, after treatment. I am not trying to throw a pity party, as I am perfectly aware that there are others who have it MUCH worse, but here is where I hit a wall. I am alone. The only thing connecting my children to each other is me. What if something happens to me, and they get separated? Who is going to take care of them if I end up in the hospital? Who is going to be their guardian if I die? Why are these things that I have to worry about at only 28 years old?!?!

I am pretty open about my condition, and some people may even find me talking about my illness as obnoxious, but I do so because it makes me feel less alone. I am already alone at the end of the day, and I like to feel like I am less alone in my struggles. I acknowledge my swelling. I discuss my treatments. I go over what should be done if I start to experience a dangerous symptom. Luckily I work with people who have health education (one is still in school for it, and he is AWESOME to talk to about this stuff), and/or spouses with similar conditions. Most of them understand, and are very supportive. They don’t treat me any different, but don’t harass me when I am obviously having a low day. But at the end of the day.. when I go home and I curl up exhausted on my couch.. I am alone.

Now, I am aware that I had Jeff for two years. I am aware that he did plenty for me, and he was as supportive as he knew how to be. It would be nice to have his arms wrapped around me. To have him go to the pharmacy and pick up my pain meds when I can barely move. All of that would be nice.. but it wasn’t right. Neither of us were satisfied with what we had, and we were both unhappy on different levels. I miss my friend dearly, but I have come to realize I do not miss my “boyfriend”. The emotional turmoil that was being with Jeff was so very draining, that I still believe it actually made me sicker. Though I am going through some rough times, and continue to have more and more symptoms, I know that if I was still in a relationship with Jeff it would be much harder. That being said… I miss him. I miss talking to him every day. I miss the jokes. I miss my friend. I miss his laugh, his smile, and his odd humor. I miss the fake dirty looks, and the harmless threats. I miss watching our shows together, and then gushing over them later. I miss my friend, and there is nothing I can do to get him back. At least not right now.
I can hope and pray that the wounds will heal for both of us, and one day we can be friends again. I am not even sure if that is a possibility, as we have both been so awful to each other. I do know that right now.. it is just not time. But that doesn’t change the fact that I miss him.

confused-doctorToday after work I went to the pharmacy to fill a few more prescriptions. More and more drugs for my body. More and more money to keep myself functioning. When I add up the amount of money I am spending on my health, all the while still feeling so horrible (though IMMENSELY better than I did before), I can’t help but feel so sad. What have I done to deserve this? What did I do to my body that caused it to turn on itself so harshly, and continue to break down? I know I haven’t been to best to myself, but I see people who are preconditioned for horrible diseases, live terrible lives, and are healthier than anyone else I know. I can barely walk to and from the mailbox without aches and pains. I can’t run and play with my kids in the park. I can’t go bike riding. I can’t climb trees… so many things that I am missing out on because of this illness.

The amount of loneliness and sorrow that comes along with a chronic illness is overwhelming. I had no idea it was like this, and my heart aches for those out there who suffer as I do, and more. The looks I get from people. The acne looking blisters. The bruises that have no explanation. My grayish skin tone. Black circles around my eyes. Bloating up three sizes bigger than all of my best pants. I barely fit into my fat jeans, and even those hurt my swollen, achy thighs. These are only the visible symptoms. The pain and pressure that comes along with all of this is indescribable. I have never felt so alone in my entire life, and I don’t even know how I am going to handle this long term. As I stated before, I have not been this emotionally free in a long time, and there are PLENTY of good things going on in my life right now. That still doesn’t change the ache I have in my heart, the sorrow, and the pain of being alone. Of feeling like I will always be alone because of my illness, my past decisions, and my future. As I sit on the edge of my bed, whole bod aching, sobbing from the exhaustion, I can’t help but ask the universe for something. PLEASE… PLEASE… please..

Don’t make me do this alone.

Forgetful

I have always been a bit of a forgetful person. I would lose my keys, or misplace something almost daily. I have to set alarms for certain activities, and would forget to pay my bills until a pink slip comes. Now that I have to remember to take my medications a few times a day, it is vital that I get a grasp on this forgetfulness. If I don’t, there can be trouble.

Guess what? I forgot.

Now, I didn’t forget all of them; just one. But it is my pain/anti-inflammatory pill I forgot. For two days. I fill my pill sorter out every Sunday morning, putting the pills in each day one at a time, double checking to be sure they are even! I have been very meticulous about this for months now! But with me feeling a bit better, against my better judgement, I let something slide. As I was popping my pills into each day, I realized I fell short on my meloxicam. I have all of my pills auto refill at my local pharmacy, and I had gotten a text yesterday saying my pills were ready. I will remember, no big deal. Except it is a big deal, especially because I forgot. COMPLETELY!!

Fast forward to Wednesday, and I am suddenly feeling a bit tense, and sore. I thought perhaps I had accidentally eaten something that was contaminated with gluten, and I would just need to brush it off, and keep going. By the time I got home from work and was done running my errands, I was couch ridden. I figured a bit of rest, and I would be good. I drank some wine, and hung out with my friend Hank. We watched a horror movie for a bit, and just talked. I was feeling better by the time he went home, and made my way to bed. I woke multiple times during the night due to pain, and discomfort, but this is pretty normal for me.

Then morning came. Oh.. morning. I woke in a surprisingly good mood, and though I was still and sore, I figured after my coffee and morning meds, that I would be fine. Boy, was I wrong!! As the day went on, I got more and more sluggish. I kept dropping everything. Forgetting what I was doing, and by the time lunch hour rolled around, I was miserable. My hands were swollen and painful. My fingers were almost twice their normal size, and purple. My legs and feet felt like they were going to pop, and I felt all around terrible. My bones ached… My right arm killed, and my right knee throbbed. I called my Dr to see what I could do about the pain and discomfort. I had to leave a message. I sat at my desk, feet swelling, hands aching, head throbbing. UGH! I tried to focus. I considered going home. Then I gathered everything I had left in me and got back to work.

I pushed myself through the day, forcing a smile so I could even fool myself into believing I was ok. I could feel my whole body swelling up and aching, but I just kept going. As silly as it sounds, there are times I feel like a hero. Pushing my way through the depths of pain for the sake of… SEO? Uggh… For the sake of being able to keep a roof over my children’s heads. Clothes on their backs. To do it all by myself. All. By. Myself. Now there’s a concept we will have to come back to…
Once home, I laid down on my couch, and told my oldest that I was sick. Tonight she would be making any food for my two younger daughters, and we would be picking a family movie to watch together. It was going to be a quiet, simple night. She agreed and we went about getting things in place. After laying down for about 20 minutes, getting back up was harder than I had expected. My hips screamed! My legs throbbed, and my feet felt like they were being pumped with blood. My fingers stiffened up, and my stomach turned. Then it dawned on me: I FORGOT MY PILLS!

It is so funny (and sad) to think that missing one little pill each day has such an effect on me. I guess I have forgotten how painful rheumatoid arthritis can really be, since I have been getting better and better over the last 3 months or so. Now I am nearly in tears because I forgot one of my many medications.. twice. Forty-eight hours. That’s it. I can only imagine what it would have felt like if it had been my plaquenil. (That’s a scary thought) So many people take advantage of their healthy lives. The fact that they can make it through a day without even thinking of pain at all. They gripe about a stubbed toe, or a hang nail. They complain about something in their eye, or eating too much so now their stomach hurts. So much menial, and temporary pain blown out of proportion, that when people have real pain it goes swept under the rug. “She’s being dramatic” – “She just wants attention” – “She is over reacting” – So now here I sit on my bed, legs half numb, hands tingling as I write this blog (that has taken me over an hour to right because I have had to stop multiple times to let my hands rest). Sometimes I wish I could make them feel what I feel. Let the pain sink deep into their bones, and watch them as they cry out in pain. I would never truly wish this pain on anyone else, but I just.. I wish they knew.

Tonight I feel very alone. Nobody wants to come and hang out with the sick girl, or even sit by my side while I watch TV and suffer. If I am not fun, I am not visited. It’s nights like these that I wish I was still with Jeff. Not that he would emotionally support me and make me feel better, but that I could at least snuggle up next to him and benefit from the physical contact. Jeff wasn’t a big cuddler during the last few months we were together, and my constant requests for contact seemed to annoy him; but if he were here, at least I wouldn’t be alone. I am aware that is no way to think, but I cannot help but long for the company of someone… anyone… who can just hold me until I fall asleep.

I should be less forgetful..

Auto Immune Disease and Jon, Jeff, Josh, Joey, and Joel…. and Joey?

To open this post, I have to say this: I have decided that I am not going to date one person. As much as I like Josh, neither of us are looking for a relationship, so why date exclusively? I have been such a serial monogamous that i don’t even remember what it is like to not have to worry about someone else and their emotions. I need to take care of my self, and I decided that dating multiple people is going to help me with that. Why? Because I can. I feel like expanding my personal interactions is going to expand on who I really am inside. I don’t even feel like I know who I am anymore, and that is horribly frustrating. Putting myself out there and spending my time with a variety of people is going to help me remember where I stand with myself. datingCorbis070508_450x300 Plus.. I don’t have to be reminded of how sick I really am, and I can relax for a bit. That being said, let’s dive into yesterday.

Yesterday by the time I got off work, I was horribly exhausted. My best friend of 17 years text me and told me that she still wasn’t dilating, so her baby was not here yet. She doesn’t know when it will happen, but she is hoping that it will be tomorrow. As excited as I was to see her, I was relieved. Usually by Friday night I am so exhausted that I barely have energy for anything. It used to be daily, but it has become less and less common. Thank god! Living with celiac disease and rheumatoid arthritis is such a challenging life, and being a full time single working mom just adds to it. alg-child-mom-briefcase-jpg Again, I have been trying to find things to motivate me, and keep me going. Most days I plan out things that I can handle, and if I start to get tired, I am able to get myself back in my groove.This is something new I have figured out, so I am getting better at it. The exhaustion is impossible to handle sometimes, so finding solutions can be pointless from time to time.

The soreness in my right knee is getting worse, and yesterday when I would walk, now and then it would click and send shooting pain through my knee. I am considering going to the Dr for this, as I am thinking my cartilage might be almost completely destroyed. I am going to give it time, see what happens. My knee tends to lock up if I sit cross legged too long as well… my solution is to just not sit crossed legged for very long.

I sat on the floor off and on all day, as well as worked at 4 different desks. My new sales trainees were on the phones, and I was answering questions. I was trying to collaborate all of my notes from both sales and client management from the week, and put next week together. We have multiple issues that need to be addressed. I have weeks and weeks of training that needs to be put together, all the while doing interviews, and starting new trainees next week. The demands of a growing company, right? I am happy to be where I stand, and it is a great movement towards my long term career.
I often worry that my job is at stake on days that I am too exhausted to do much, and yesterday was one of them. I lay with my head on the desk while I talked to the Director of Sales. I have known him for years, and I even trained him on how to do his job. Jon is a great guy, so when I apologized for my demeanor, he blew it off and told me that I do such a great job, I am entitled to put my head on my desk whenever I see fit. I am lucky to have such a great support system at work as well.

I made my girls tuna fish sandwiches for dinner, which is what they requested, then laid down on the couch. Multiple people started texting me about whether I was in Salt Lake and if the baby had been born. This is what I get for excitedly spreading the word about the labor.

“No.”

“Not yet.”

“Maybe tomorrow.”

One of these people was Jeff. Hmmm… Jeff. He knows how much I love Jenni, and was aware that she was pregnant. In my excitement, I had also text him about her labor. He was asking why I hadn’t send pictures yet. I didn’t want to talk to him, so I responded with very short answers, even though I was doing nothing. He said he would let me get back to my kids, because he knew I was starting movie night. I had already set the girls in place with some popcorn and a movie, so I told him we had already started. “Well, I’ll let you get back to relaxing”. 1724152240 I have no idea, but this really annoyed me. As if he decided to text me, but something (perhaps his gf) had interrupted, so now he was saying he was letting me get back to what I was doing. I know him well enough that this assumption is likely true. I know he reads my blogs, my facebook, my other social media sites. So he HAS to know I am spending tonight alone on my couch. Long story short, I chewed him out about letting me go, and not doing to his gf the same thing he did for me. I feel bad for her. How would I feel knowing my new bf was stalking his ex, and wanting to know everything about her life? I would not be ok with that. I assume she doesn’t know, which means he is starting off his relationship with deception. Why do I care? I have no idea…

Josh and I decided that the name for Jeff in my phone needed to be changed to “Stage 10 Clinger”. We all have our issues, but his non stop checking into my life (in times I do not initiate it) is too much. I don’t check into his, minus one look at his instagram, which was so unpleasant I decided that I was done with that. I have another date scheduled with Josh for next Friday. We are going to Rodizio Grill, as they are VERY gluten free friendly. We would go sooner, however he is working long hours, and running intense drills for the next 6 days. We are not even going to be able to talk, though he was insisting that he call me when he is done Thursday night. Midnight? I think not. I will be sleeping.

I am very much looking forward to my date with Josh. We get along so well, and he really makes me forget all of my woes. He is just as aggressive with his irritations as I am, and once he is done venting, we move on. It is so nice to be able to vent, and be vented to. I feel oddly close to him already, and I barely know him. I am now “his redhead”, and his coworker has been downgraded to “the other redhead”. I have no idea, but this makes me very happy. I kinda miss Josh, but not so much that I would say I have actual feelings for him. I don’t think I am ready for that in general, but I enjoy him very much. I am sad we won’t be able to talk this week, or exchange random pictures. I have seen his roomate’s cat too many times.

pensive woman biting lips Being as sore as I was, I decided to seek out someone I have been on a date with or hung out with to come and give me a massage. I have plenty of men I know, right? My self confidence is still pretty low since Jeff destroyed it with his terrible words, but I am getting back up there. Joey! Joey and I hung out last week, and we had a decent time. He is a very serious salesman for a car dealership, which a Bachelors degree in German Communication. All the while he feels I am too smart for HIM, as I am nerd smart. How cute. I text Joey asking what he is doing. His band is playing in the Riverwoods tonight, and he wont be finished until midnight. UGH! My body hurts so bad! “Text me when you are done, and we will see if I am still in need.”

Justin. I have known Just since October of last year. We have hung out a handful of times, and always have a good time. He is very reserved, but I can get him talking. He has a very beautiful smile, and is a full time student. He is also very giving, and has given me a neck rub before. I asked… he was in the middle of packing to move tomorrow. He has no time tonight, but another night he will. Well, that doesn’t help me tonight, does it?

CurledUp-Painting I know I am selfish. I know what I am doing it very self motivated.. but after a few pain pills, and glasses of wine with ZERO relief of my tension and pain, I was desperate. My whole body ached, especially my back, and I could not get comfortable. Nothing was working, so I kept seeking out help.

JOEL! I have known Joel for YEARS.. the only problem is that if Joel comes over, he is going to try to get me to sleep with him, and I am so insanely attracted to him that I may not be able to say no in my inebriated state. I text him anyway. Again, I am in SO much pain I am desperate! So desperate that if I didn’t know Jeff was with his gf, I might even try to get him to come over. Ugh… not that desperate yet, but you get what I mean. Joel has his little twins tonight, and is unable to come over. This was actually quite a relief, much to my surprise.

By this time I had downed quite a bit of wine! I was watching a movie about a woman who has face blindness, and didn’t realize how into it I had become. I actually JUMPED when Joey text me. “I will be there in 25 mins”. Whoa! It’s 11:30 already? I have been seeking a masseuse for over 2 hours to no avail. Until now! Joey is on his way. I realized I was wearing a pair of pajama shorts and a t-shirt with no bra. My hair was all over the place, and makeup was smeared across my eyes. This was NOT attractive at all. I decided I didn’t care, and I was just going to stay how I looked. Besides, this is who I really am, right? Why try to hide this. Why put on a facade that I am more put together than I really am?

When Joey arrived, he got straight to the massage. I took off my shirt and held a blanket to my front. Oh, how it felt SOOO good! o-face When you have an illness that causes such chronic pain, it causes SO much tension. Even the slightest touches to the body can be a HUGE relief. One thing I miss about having Jeff. At least I had someone to run their hands along my skin and relieve some of the pressure. Being single means that I am rarely touched, and my tension keeps building throughout my body; mostly my back. I sunk into every touch. Every moment! Joey is a 30 year old recently divorced man. His children are young, and he is still obviously wounded from his marriage ended. He has scars down both sides of his face, but is still quite handsome. He has perfect teeth, and an amazing smile. I am a sucker for smiles. Oh, drunk Becca… what is wrong with you?

Of all the things I do, the one I tend to regret most are the moments I give into my sexual desires and drives. I am so highly sexually driven, I feel like I may be a man sometimes. 4b0f7-ashamed My thoughts wander off, and I get stuck in “day dreams” about people. Coworkers, strangers on the streets, friends. In my drunken state, I started to drift into one of my “day dreams”. My body starts responding to his touch in a different way, and he responds back. What is wrong with you, Becca??

I need more self control.

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