Simple Exhaustion

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I am exhausted. Simply exhausted. So that infection in my head, apparently isn’t an infection. The kicker? No one really seems to know what it is. Basically I’ve had a headache since early December, varying from moderate to severe, but it’s always there. I had finally caved and stopped at an immediate care, which is where I was told it was an infection. They gave me steroids to reduce the inflammation and some medicine to help with the side effects of “vertigo”.

Well, last Thursday (today is Monday), I went back to the immediate care because for the few days prior, my headache was staying purely in the severe pain range. The doctor I saw there, referred me to the ER for a ct scan because she didn’t think it was an infection. So I gladly went to the ER, because by that point I was in enough pain to be consistently crying. Once I got to the ER, they didn’t want to do any more imaging since I had seen a neurologist back in 2015 for a couple of migraines (which cleared up – and completely different kind of headache) and my scans were clear. They treated me for a migraine and for pain and sent me on my way with a script for Imitrex (injectable).

My pharmacy didn’t carry the imitrex so I relied on my existing script for tramadol to try and manage the pain until I could get it. I essentially spent Thursday night to Sunday afternoon crying in my bed. Finally Sunday I cracked and headed back to the ER where they treated my pain again, and gave me a small pain med script for Norcos. They still didn’t want to do any imaging, and referred me back to my neurologist.

So, I went home crying, doped up on pain medicine that only took my pain down to a 5 out of 10. I came to work this morning, one, because I need the money, and two because of the headache and general “not right” feeling, I don’t want to be alone. I called my neurologist (as well as two others) and the earliest appointment I can get is Feb. 20th. To say that I’m stressed out and in pain, is putting it really mildly.

I am grateful though. Jon has basically been taking care of me and the house for the past few days, as well as sitting with me in the hospital trying to comfort me. Not only that, but a lot of my friends have been rallying around me, helping with anything from meds to childcare expenses and childcare itself. I don’t know what I would do without everyone, because frankly this is a bit much for me to take. I can deal with my tachycardia and my Crohns, but this pain is unbelievable, and to be honest, I’m scared.

The headaches I got before were two migraines with some low level headaches in between. They eventually just went away. Beyond the two migraines, I could function as long as I had some excedrin. Beyond that experience, I’ve never really had headaches. So this is completely new to me, and after a month of them going on, a week of them being severe, I’m worn down and really starting to doubt myself as well as my doctors.

I don’t know what I’m going to do. What if the headaches don’t subside before my appointment on Feb 20th? My painkiller script is only for 15 pills, I’ve taken 3 today to just get through and that’s barely keeping my pain at a tolerable level. I’ve already racked up $1,300 in copays for the Immediate Care and ER since Thursday, that’s not really a viable option, and neither is using up my remaining 4 days of sick time for the year.. or missing work beyond that. So I just don’t know.

I guess just cross your fingers for me. I am at a loss.

 

New Year, Less Bullshit.

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… or at least that’s my goal anyway. I really don’t do resolutions, nor do I take them seriously to be honest. Why make a resolution like “I’m going to eat healthy”, when we all know I’m going home to eat my weight in pasta more nights than not? Mostly though, I like the fresh start that a new calendar year brings. It’s like a brand new book that I get to write, and the possibilities are endless.

Someone I was speaking to the other day didn’t understand this way of thinking. The way they came off was condescending, like myself and people who think in a similar fashion are unintelligent for looking forward to the new year. New Year’s Day is just another day to them, and if any of the rest of us had a bad year (ie: 2016 sucks! posts) it’s either dumb to think that way or we bring it upon ourselves.

I don’t know, I guess I kind of get that idea. I mean, in reality January 1st is just another day. For me, I guess it just symbolizes a new start. Every day is a new start, a fresh page, especially more so it seems since I’ve been diagnosed with a chronic illness. The way my head has figured it out, is that I have a lot of shitty days. Literally and figuratively. I have many, many days where I just don’t feel up to even getting out of bed. However, on those days, I’ll lay there, get all grumpy, and have to remind myself.. “tomorrow is a brand new day, I might feel better tomorrow.” So that thought process naturally flows over onto Mondays, and each month that passes as well as years.

This past year was a little rough. Especially in the beginning. Back in the beginning of the year, I was still struggling with being single for the first time in almost 5 years. Then on top of that, I had developed Inappropriate Sinus Tachycardia (IST) out of nowhere. So the first half of the year was basically spent trying to cope with yet another life changing diagnosis. Then of course I had a bad string of dating, and finances from being sick caught up to me. Yeah, rough. Not as bad as the year before though, and honestly, as the year went on it did get immensely better.

So for 2017, I’m kissing the previous year goodbye. Each year will get better, and I don’t think it’s a negative thing to dislike a year because of what happened in it. However, the last year, if I could change anything about it, I would change my perspective. I spent so much time being negative about everything that happened to me, I lost a lot of time I could’ve done something with my energy. I focused so hard on the things that were going south, or the changes my life made without my consent, that I missed celebrating all of the goodness I do have in my life.

So this year, I am going to be focusing on the positive. Positivity creates positivity or whatever that fuck that saying is. I’ve started a 2nd journal (a beautiful handmade leather one Jon got me for Christmas) and am using it as a gratitude journal. Each day, regardless of the tough things that happen, or the day to day frustrations, I am going to write a handful of things that I am grateful about (and within) my life. No matter what we do as human beings, we are all bound to have a rough day here and there. I’m just hoping that on those rough days, I can open my journal and appreciate the things that are hidden beneath all the crap.

Today I wrote my gratitude entry on my lunch break. Since yesterday morning, my headache has returned despite my medicines (head infection – vertigo) I got on Friday. I was a bit worn out and by lunch time was starting to look down on my day as my stomach started hurting as well. So I wrote.

I just made a simple list:

  • an attentive boyfriend who checks in on me throughout the day.
  • a daughter who albeit is grumpy about going to school tomorrow had a blast during holiday break.
  • coworkers that I don’t want to murder most days.
  • my new favorite sweater that I’m pretty sure I stole from my sister inadvertently.
  • knowing I’m going home to a cozy house, a hot cup of tea, my chatter bug kid and my coloring books.

Nothing specific. Broad range. Yet, after writing it down, reviewing each in my head, and then writing a bit in my other journal, I honestly felt a bit better about the day. Am I tired? Oh yes, painsomnia struck last night, so I’m yawning my way through the day. Do I hurt? Of course. Yet, my phone goes off with Jon checking in to see how I am. I know I get to hear all about the short kid’s last day of break when I pick her up. For now? I’m warm and snuggly in my sweater (sorry Chelsea!) with a cup of tea.. and I know tonight is going to be full of snuggles, hot tea, some scifi, and some coloring while I’m wrapped in my blankets.

That simple journal entry reminded me that I am damn lucky to have what I do have. I should be grateful that I have so many good people, and comforts in my life. It could always be worse, so I have to appreciate what I’ve got.

This outlook/journalling is working so far. Let’s see if I can keep it up throughout this new year. It is a new book after all, and despite what we can’t control, we can control how we feel through it all.

 

Happy New Years Everyone.
Much Love. Xx

The Importance of Feeling.

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Feelings. Sure, I claim that I don’t have any, or that I have just one left. However, they are there. For me, I stuff my emotions deep down inside and rarely let them out. I’ve built up my walls so high to keep everyone out that the only way I can keep from exploding is through writing (unless I have writer’s block.. then it’s all downhill from there).

Unfortunately for a lot of us in life, we get hurt after sharing what’s inside of us with others. So walls get built, and walls get reinforced as we get older. I’ve had a rough couple of decades, so my walls I built are basically impenetrable. It’s been a major issue in past relationships. I have such a hard time communicating, but it seemed as though as soon as I’d let some real emotion out, it would come back to haunt me.

So I try and pour all of that rough unbridled emotion into pages of a journal. Or if I need to express myself and I didn’t see a way around it, a letter directly to someone. It always seems to help to let the words flow through my fingers and get it all out. However, it’s not as good as just telling someone.

There’s a different feeling there, being able to tell someone that something hurt you, or that something scared you. Being able to just spill it all out. It’s refreshing to let people see that you’re not “the strongest woman” (or man) that they know.

I was at my breaking point yesterday. I was in immense pain, from pretty much all of my joints as well as my chest and stomach (IST and IBD). The pain was so horrible I was having a hard time keeping the tears back in front of my daughter. Then to pile on the financial stress (because I’ve been so sick lately, I’ve missed work under FMLA. Daycare is very expensive even if I work overtime, so missing work put me in the situation of paying the mortgage vs daycare, food vs. daycare, Christmas presents vs daycare. So after 2 months, it’s up over $1000, and frankly I don’t see a good way to fix it) it just broke me.

I went home and holed up in my room with the intention of writing in my journal. Which I did, I wrote page after page after page. Yet, no matter how much I spilled onto paper, I didn’t feel any better. The pain obviously doesn’t go away with writing, but I was hoping if I could get rid of the turmoil and stress snowballing in my head, I might be able to handle the physical pain.

Then Jon came in. He had visited me on lunch, and I had basically hopped out of the car because I thought I was going to cry. He came in the bedroom, and gave me a hug and I just lost it. I don’t know if it was because I was in physical pain, or what, but it all just came pouring out of my mouth. Everything, with tears and all. Over the course of 20 minutes, all my demons roared out and I just let it go.

After a little while, I felt better emotionally, and was able to deal with the physical pain. We didn’t find a solution, and I still don’t know what I am going to do to catch up on my daycare bill, but I have ideas to cut the costs in the future. Either way, I was able to tell someone else what was bothering me/scaring me (losing my daycare.. losing my job) and I felt a lot better afterwards. I was able to talk for a while, and then take some pain pills and get a little sleep.

That was a good first for me. I don’t open up to anyone, usually. It’s something I’ll need to work on in the future. I don’t want to muck up this relationship with my communication issues, so I’m really going to try. Either way, knowing that not everything is on your shoulders, that you’re not the only one carrying the weight is a feeling I want to feel again. I’m just glad I have a partner willing to help me take on the world.

A bit jaded, but not broken.

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If you had asked me a year ago if I’d be in a relationship now, I’d have broken the nearest chair to stab you with a shard of the leg. If you had told me I’d be falling asleep smiling and waking up to a good morning text every day, I’d have laughed at you. My, oh my, how your life can change in a short year.

More than a year ago, that wreck of a relationship Ryan and I had ended. It ended brutally too. I had caught on that he had been cheating on me for about a year (I’m guessing), and when I confronted him about it, he left. Not only did he shred my trust, but he hurt my daughter, as he was a father figure to her. To top it off? He took pretty much everything out of the house, from furniture all the way down to the ranch dressing and peanut butter.

At the time, I was heartbroken, especially having to face replacing normal household things right around Christmas. It was hard, and I was very cynical, but my friends, family, and coworkers (my 2nd family) rallied around my daughter and I and made sure everything was replaced and we had a wonderful Christmas.

Still. I was pretty intent on staying single. I had a couple pseudo-relationships over the spring/summer. One of which, almost 5 months later requested that I give back a gift he had given me to track my heart-rate (because of Inappropriate Sinus Tachycardia) in order to get back some books I had lent him back. The other one, stole my medicine and was a closet drunk! Trust me, it was fun (sarcasm, if you couldn’t tell). Regardless, no feelings were hurt on my end, beyond a touch of anger. So coming into the end of summer and fall, I was content to just be me.

I continued to enjoy my solo evenings with a cup of tea, and the random beers with friends. Hanging out with my kid, and keeping up with chores. Wasn’t looking for anything. However, as the saying goes.. when you stop looking, is when someone steps into your life.

Enter stage right; Jon. We’ve been dating a few months (? – I’ve never been good at keeping track of this kind of stuff) and for the first time in my life, someone is showing me exactly what my daughter and I deserve. From the way he includes my daughter in everyday things, to the way he helps around the house for no other reason than he is there and I deserve the help. I’ve been blessed with a man, who (not only isn’t on the sex offender registry haha) works, takes time to see me, and does simple things to show me he cares, like stopping by my work because I said I needed a hug.

It is unbelievable to have someone who doesn’t treat my “sick-days” like an inconvenience, or throws my fatigue in my face. Someone who puts as much effort into every day things as I do. While he does buy me little things he thinks I’ll like, he doesn’t try to buy my affection with extravagant gifts. He’s a grown ass man, who understands, that if he gives me a gift, it’s out of kindness, and he doesn’t expect anything in return. (Word to the wise guys.. just because you buy a girl something, doesn’t mean she has to like you or have sex with you. Just sayin’.) From my mopey-depressed-I-hate-everything days to the I’m-on-top-of-the-world-don’t-need-anyone days, he’s there, and he’s got my back.

Now I’m just working on fighting through some of my baggage with relationships. Surprisingly, I haven’t had many thoughts or worries of him cheating on me. When I found out Ryan cheated, I immediately imagined throwing literal baggage into my brain. Cute little suitcases with skulls and flowers on them. So meh, I’m not arguing that, just chalking it up to being too lazy to worry about it. However, I do apologize for damn near everything. The last couple of years with Ryan, he spent complaining about me. From how I cleaned, to being sick, to having a down day or even how much or little I worked. So now, if I have a mopey day, “I’m sorry” slips out before I even have a chance to catch it. It’s still just a habit. Jon lets me know that I have nothing to be sorry for, but still.. it’s there. I even catch myself saying sorry, or flinching about stupid shit that used to start a fight, but I know it’s silly. I’ll get over it at some point. Finances? Even though we’ve only been together for a few months, I still feel compelled to explain where I got the money for a gas station coffee. Through the thin times (when just I was working or when Ryan started working and bitching about paying his share) Ryan and I would fight because I’d scrap together change for something for me. I manage to catch myself now, because god dammit I deserve a coffee once in a while, but I still get mad that that’s a habit I have.

I just keep thinking, so this is what a normal relationship is like? No anger, no yelling, no belittling, no gas-lighting. No probation officers, he can take my daughter to school if I’m sick, or come to the park with us. Child-related crap doesn’t just fall on me. Hell, far far far down the line, if we ever bought another house, or if he was interested in buying property with me up north, we can buy anywhere.. not just 500 ft away from schools. For Christ’s sake, there’s been no bomb falling like “oh by the way, your house is going to be on the registry now”. There’s no staying out all night coming home with hickeys and such. There’s no drinking behind my back, no missing meds, no expectations of more with a gift.

So here’s to something good, something that will hopefully last. Am I bragging? Maybe. However, after the shit I’ve been through in the past 15 years? I’m going to enjoy this wonderful person who fell in my life. Why the fuck not? It’s about damn time.

 

xx

Snow Snow Rambling Snow Snow

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The first big snow of the season is supposed to come this weekend. Sure, we’ve had a dusting or two, maybe a couple of inches, but they are saying it could be 6-10 inches over the course of 48 hours.

As much as I hate Winter, I do look forward to the first snow storm. Something about it brings out something very childlike in me. I have so many memories attached with the first snow and getting excited for Christmas, that I can’t help but be a little bit thrilled when the first snow storm hits. Not to mention, we’ve had a handful of years where it didn’t snow until after January, so huzzah to snow for Santa.

I do have some things to do before the snow gets here. I decided against putting up Christmas lights on the outside of the house, (got the inside covered!) but I do need to move some things into the shed and pull out the snow shovels. Just generally clean up the yard so I don’t have to do quite as much in the spring. The snow is supposed to start tomorrow evening, so I know what my day plans are for tomorrow.

Thankfully I don’t have any plans for this weekend. I did most of my present – shopping online this year, so beyond one more day with a trip to a couple stores, I’m done. So while the snow is piling down, I’ll be at home with my tea, occasionally shoveling but mostly binge watching Netflix and random cleaning. Unfortunately the boyfriend, Jon has to work, so I’ll be worried about him driving, but I’m sure he’ll be fine. Hopefully the snow slows down by Monday so my own commute to work won’t be too bad.

Other than my excitement for the white shit that falls from the sky, things are.. okay. The short kid is excited for Christmas, I got her one big present and some smaller things, and of course Santa is coming to my house and Grandma and Grandpas.

I’m trying to share in her excitement but of course, for I assume all single parents, the holidays are a stressful time. Jon has helped out with some gifts, and has been helping me tackle some things around the house I haven’t had time for so that’s definitely been helping. Just trying to stay on top of all the household chores and the finances is kicking me when I’m already down.

Of course my FMLA for work had expired, and getting it renewed isn’t exactly easy. I’m trying to be patient and understanding, but it hasn’t been easy on the corporate side of things. Thankfully I have a couple of friends who either work in employment law or are very familiar with FMLA that are guiding me through it. Of course, all of that just adds stress on top of what I already am dealing with, plus being sick. That’s how it always works. When it rains, it pours. (Or in this case, SNOWS!)

Other than that, one thing I don’t have to worry about is my car. My lovely Rav4 hit 250,000 miles the other day. We rebuilt the transmission 2 summers ago, so that’s been good. However, my wheel bearing went out. I went to get that replaced, and also replaced the ball joint as well as finally getting new tires for it. It was time, I couldn’t put it off any longer as they were pretty bad and I was sliding on just wet pavement. Of course that set me back quite a bit, but it needed to be done, and thankfully it is done just before the big snow.

I am still reminding myself to think of the good things, because like anyone else under a lot of stress, it’s easy to take life for granted. I’m very lucky, even though I’m having a tough time with my health, I’ve also been much sicker. I may be stressing about finances, but I have my house, car and decent job. I may get overwhelmed, but I’ve got a smart cookie for a kid, and a very loving boyfriend (who brought me a chai at work today because I was having a rough day!). There’s an upside to everything, and I am very blessed to have the life I do and the people in my life.

Wheezing costs money

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Being a single parent sucks sometimes, hell, being a single parent with a chronic illness really sucks, but that’s neither here nor there.

My little Buddha has been wheezing up a storm lately. We know she’s allergic to cats (not much to the little black fur-ball of hell that we own, but other people’s cats) and when she gets a cold, she immediately feels it in her chest. She’s past the freaking out part, but has a hard time running around and sleeping despite all of the old asthma tricks I know.

So anyway, on Friday she was wheezing, I chalked it up to asshole cat sleeping on her face or something, but it didn’t go away, so I kept her home. Thankfully we have some prescriptions from her doctor, that should kick it in the butt pretty quickly, so there’s that positive note. Unfortunately, even though I met my prescription deductible, the short one did not, so that was the rest of my money and then some.

This is where I’ve struggled the most raising her on my own. Between childcare (which is 1/3 to 1/2 of my paycheck), to every day things like colds, it kicks me right in the bank account. It doesn’t help that I miss days due to my own illness, but I always somehow figure out a way to make it work.

Honestly though, it’s times like this.. where I’m shit broke before Christmas, that I get angry at the sperm donor. Both Noodle and I have LONG gotten over him disappearing to make more babies in Colorado, and I prefer he stay the fuck away at this point, but Christ. He toted to everyone that he was such a good dad, yet since he’s left.. nothing. Not a single dime of child support, no health insurance for Noodle, and he’s supposed to pay half of daycare. I know he’s occasionally paying his other “baby mama” here, but nothing. Yet the fucker goes off and pro-creates again in another state. Man, I sure do know how to pick em. Ugh.

Whatever though, as most of you know, my kid is wise beyond her years. Back when she was 7 she picked up that her dad was a scum bag when one of the kids at school explained what a dead beat was. She understands, she accepts it, and she’s understanding of the fact that I do my best to cover both parental roles. The benefit of all that, is she is a very grateful child, and she understands money more than most kids her age.

It still sucks to have to count pennies and pick bills to pay around the Christmas Season. When all is said and done though, I’m proud as hell of the fact that I’ve been making it work this far. Noodle will grow up knowing that I took care of her on my own.

Normalcy.

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I was going to start off this blog in a general, all encompassing way. I was going to include everyone with a chronic illness in this post. However, I don’t know what’s in everyone’s head. Frankly, after trying to start writing the first few sentences, and deleting them about 5 times, I give up.

This entry is my thoughts. Purely me.

As some of you know, I’ve been having some problems lately. My heart isn’t acting up nearly as much as it had been, but when it does, it’s traumatic. My Crohn’s has been active too, with all the normal symptoms. From urgency, to extreme joint pain, and with today’s newest symptom, mouth ulcers.

It’s been a rough couple of weeks, which of course has been effecting my mood. It’s been hard to keep myself out of a rut. With the debilitating fatigue, it makes it all the more easy to just stay in bed.. why fight my body and depression. Of course, my anxiety is high as well. With missing the odd day almost 4 times a month, my bank account is hurting.. and with Christmas coming up, that’s scary.

To top that off, I found out my FMLA expired, and having never been on FMLA before, I didn’t know I was responsible for keeping track of when it expires. I figured that my company would notify me. Unfortunately that was not the case, and I randomly followed up on it and found it was expired. So there’s nothing better for anxiety than being in immense pain, living in the bathroom, and stressing about money.. than also having to worry about missing a day and losing your job because of it. Thankfully I was able to get an appointment with my chronic illness manager to renew my paperwork at the end of this next week. Still, it’s just one more thing I didn’t want to deal with.. talk about trying to choke back tears at work.

Anyways, what I’m getting at is, I’m at my.. wits end? It’s been very stressful, and I’ve been stuffing it in the back of my head, hoping for a better day, but I think it’s appropriate that I put this on paper/or in this case my blog, since it is Crohns and Colitis Awareness Week. This is one of the many facets of living with Crohns.. so why not share it?

So without giving away too much information about someone… well that’s not me.. a guy I know has a throat condition. He has a procedure scheduled coming up that will relieve some of the symptoms. Essentially a chance at pseudo-normalcy. Which is great, by all means, all of us with any kind of chronic condition deserve a break. It got me thinking though. Thoughts started tumbling through my head rather quickly. Admittedly I lost a lot of them because I didn’t think to write them down right away, but such is life.

I really don’t remember what “normal” is like anymore. I’ve been sick now, for almost 10 years. For a long time I struggled with the fact that the life I knew was gone. It took a long time to come to terms with it, honestly, it was mostly because as time went on, I started to forget what it was like.

In the years I’ve been sick, I’ve never achieved remission. Sure, I’ve had a group of months here or there that were “good” [Sidenote: not to be an ass, but “good” for most people with a chronic condition would send a healthy person running for the ER.] but I haven’t had a pain-free day, or a day without any symptoms.. period.

Thinking about normalcy almost.. almost upset me. It dug up some old feelings I’ve been avoiding for a while. Yet, I can thankfully remind myself of what I’ve gained from Crohns Disease as well as Inappropriate Sinus Tachycardia. I may have lost my old life, and I may not have much of a chance at normalcy any time soon, but I wouldn’t be me. I wouldn’t be who I am today, if I hadn’t been through what I have.

Through the last decade, I’ve learned to appreciate the “good” days, as well as the little things. I don’t know if I’d have appreciated a good cup of tea or a surprise phone call from a friend if I hadn’t been in a place where I felt like I had no one, and couldn’t even stomach water. I really doubt I’d appreciate the first warm spring day as much as if I hadn’t watched one from the other side of sealed hospital window.

Like tonight, I wouldn’t appreciate sitting on the couch with my boyfriend, watching stupid scifi shows.. if I hadn’t been completely alone and scared before.

So I guess the point of all of my rambling tonight, is that we, or I may not have “normal”. Even without normal though, there are good things. Good moments, good people, and memories to be made. Life isn’t over, life is just different. It may not be all fun and happiness, I’ll have bad days, but it’s important to remember that that’s not all there is.

 

In honor of Crohns and Colitis Week, today, I am going to embrace the good I do have. Things may not be normal, I may not have the life I used to have, but I do have life.