Tag Archives: health

In Pieces

As I sit holding his hand, my heart is shattering into small pieces. The anguish and worry etched into his face cut me so deeply, I’m sure I’ll perish.

But I must remain strong for him.

I tear my gaze from my love’s face to look at the man lying in the bed before us. Even in sleep, his face is grimaced in pain. There are wires and tubes criss-crossing over his body and the machine above his bed is spitting out numbers that mean little to me- they don’t tell me what is wrong with him.

The room is chilly but there is a trickle of sweat down my back. Anxiety pays no mind to the temperature around me.

It seems like ages before they come to tell us what our hearts already knew. He is really sick and they will be admitting him. My love and I follow closely behind as they wheel this man upstairs to the ICU.

This man is my future father-in-law, my fiance’s sole remaining parent. While I come from a large family with multiple tangents, Scotty’s family is small and few. In fact, it’s just him and this man who looks far too fragile right now.

So my heart is in pieces for him, for them, as I watch Scotty try to hold it together and not show his fear.

His father’s health has not been great for a number of years, but he’s always fought back. In fact, this is not the first time we’ve sat at his bedside like this, with our hearts in our throats. But each new time is a reminder that he cannot fight this fight forever, and we mourn the gradual loss of a great man, as his body continues to fail him.

This time we are lucky, his father will heal.

But my heart is still in pieces, already broken for the day when we won’t be so lucky.

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Gratitude Heals

Life has been a whirlwind this past week. After a holiday weekend spent working on projects and playing games with a good friend, our lives were upturned when my fiance’s father was hospitalized Tuesday.

Pops is still in the hospital today, and likely will be for at least another week, though we don’t know for sure yet. So while I wait for a call back from his doctor, I’ll share my gratitudes here, and send some positive energy into the universe on his behalf.

GratefulMondays

*I’m grateful for friends, framily, and loved ones who have been sending prayers and good thoughts for Scotty’s dad.

*I’m grateful for the nurses and staff who have been taking such good care of Pops, and who have answered all our worried calls with calm reassurances.

*I’m grateful for a dear friend who’s come back into our lives, who has been my strength this last week. I’m thankful she was able to spend Saturday with us, and provide some smiles when we needed them the most.

*I’m grateful for our doggy and his snuggles. They might not cure what ails us, but they come pretty darn close.

*I’m grateful for an afternoon at the dog park, watching our doggy play and run. That little bit of fresh air cleared our minds and temporarily eased our hearts. It’s the simple things, sometimes.

*I’m grateful for the Dutch Bros. gift card we received for Christmas which means we’ve been able to treat ourselves to hot tea and coffee while we’ve been driving back and forth from the hospital. The little pick-me-ups have been heavenly.

*I’m grateful for the long-burning holiday candle Cathy gave us for Christmas. The scents of cinnamon and pine are extremely soothing while I sit and wait for the phone to ring.

*I’m grateful we were able to make changes to our phone plans last month, so that we now have the unlimited minutes and texts for all the necessary phone calls and messages. We’d make the calls anyway, but it’s nice to know our bill won’t be astronomical when it comes.

*I’m grateful our car has been able to make the repeated trips to the hospital (it’s a 40 minute trip to where Pops is), despite it desperately needing an oil change and transmission flush, which we can’t exactly afford right now. I’m also thankful for lower gas prices which make it not so damaging to the budget to have to fill up the tank over and over again this month.

*I’m grateful for Scotty’s boss, who understands family comes first. Who made sure Scotty had time off to be at the hospital while Pops was admitted, and even paid him for those hours.

*I’m grateful for all the compassion, love, and strength we’ve received from friends far and wide. For the phone calls, text messages, emails, and tweets. For the smiles and hugs. For the prayers that keep coming, and all the positive energy that is flowing from everyone. It is all felt, and very much appreciated.

*And I’m grateful for my own treatment and doctors, who’ve made it possible for me to be able to be by Scotty’s side through all this. I’m grateful my body has cooperated this past week, and hasn’t punished me too badly for the excess stress and worry. I’m grateful that tomorrow is infusion day, and that I will be receiving some blessed relief so that I can continue to stand by his side and be strong for him.

I Promise You, I’m Bored With This Mess

I’ve been pretty absent around these parts lately. Life simply has not been wanting to play fair. It seems as soon as one thing eases up, ten more plop into my lap.

We’re still trying to get a handle on some new health matters, and that’s been my primary focus lately. It’s also been the primary trigger of stress lately. I feel as though I’ve been kicked into hypochondriac mode. Every new symptom brings concern. Is this related? Should I call the doctor? What if it’s not a big deal? What if it’s a really big deal?

I’ve been reduced to spinning circles within my own mind.

And honestly? I’m pretty bored with this mess.

I want to go back to how things were a few months ago. When I was only worried about the usual things, bills and such. I want to have a break from this added pressure, and just go back to the usual amount of stress.

Which is hardly something one wishes for, right?

But it’s true. I’m sick and tired of being sick and tired. I’m overwhelmed with the constant onslaught of drama, problems, and stress.

Anyhow, I promise you this:

I’m ready to get things back to normal. So I’m going to do what I can to help it get that way. And I suppose that means letting go of some of the stress, any way I can.

Anyone have some sharp ideas?

Playing With Dogs

Life lately has been pretty complicated.

My health has been having some ups and downs and even some sideways. The holidays came, conquered, and left. Once again we find ourselves in January where money is a little more than tight, the weather is a little colder than chilly, and we’re all pretty burnt out.

I find myself stepping back to evaluate where my heart is. What projects have a I committed to, and which do I really WANT to do? How do I balance what I want to do with what I NEED to do? How do I take care of myself and others?

Yesterday, after a particularly emotional doctor’s appointment, I came home and cried. I curled up with my doggy and tried to shut out the world. Except the world didn’t want to stay shut out. There were emails to answer and phone calls coming in and…

I’m overwhelmed.

So this morning, I didn’t check my email, I didn’t answer my phone. I loaded up my doggy into my friend’s truck, and we took our dogs to the dogpark. We stood bundled up, chatting with other dog owners as our dogs all sniffed each other. I walked around with our little Toddy while he sniffed each and every fence post. I threw the squeaky ball for the dogs who would chase it. And I watched my shy little guy chase dogs three times his size.

I got a little muddy, more than a little chilled, and am definitely tired. But the dog slobber made me smile, and as I watch my Toddy nap on the couch, I realize my mind is clear for the first time in weeks.

And suddenly, things aren’t so complicated.

A Day In My Life

I’ve read a few “A Day In The Life Of…” posts lately that really stuck with me.

While each of us walks our own path, there are certain things we all must face. In the spoonie community, the number of similarities increases. But even though we all face similar obstacles, how we overcome them is often different.

While discussing this with my fiance, I was inspired to share with you a day in my life. Not because I think my days are really that interesting, but because I don’t think even those closest to me realize what an average day can look like.

So here it is, an average day in my life.

3:00 am- I’m awakened by my bladder. Since I battle Interstitial Cystitis, I deal with frequent urination and bladder pain if I try to “hold it.” My body is stiff and I am groggy as I shuffle as quickly as possible to the bathroom. It’s a battle between needing to hurry because of bladder urgency and moving slowly because of excruciating pain. I curse my body for waking me for a measly five drops, wash up, and head back to bed.

3:05 am- I struggle to find a comfortable position that will allow me to fall back to sleep. My hands and feet are stiff and swollen, while my hips are hyper-sensitive, even the slightest pressure is causing white hot pain to shoot down my legs. Laying on my stomach seems to be the logical choice, but I know it will cause me to be awakened with horrid heartburn in a matter of minutes.

4:00 am- I’m finally able to doze off again.

7:30 am- My bladder awakens me again.

7:35 am- I crawl back under the covers. Though I know I won’t be able to fall back asleep, the warmth of my bed is where I prefer to be while I wait for the stiffness to leave my joints. Trying to force any activity more than a trip to the bathroom this early in the day will leave me gasping in pain and exhausted in a matter of minutes.

8:45 am- My fiance helps me into the shower. Due to nerve damage in my feet, showering alone is a dangerous thing. I’ve had a few instances where I’ve slipped, so I must shower before he leaves for work just to be safe. The hot water feels heavenly on my sore body, but the effort of standing and washing myself wears me out. Most days I must skip conditioning my hair because I’ve run out of energy. Shaving is a luxury.

9:00 am- I debate which pair of sweat pants I want to wear. If my bladder is causing lower tummy pain, I need to choose the loosest pair so there’s minimal pressure on my abdomen. Equal deliberation goes into picking out socks. I have many fun colors and designs, but which ones I wear depends more on how swollen my feet are. Too much swelling, I must choose the fluffy slipper socks that are nice and loose. My fiance has to help me fasten my bra, the tiny hooks have long since become too intricate for my swollen and stiff fingers to manage.

9:45 am- Now that I’m dressed, I need to set out my morning pills. A DMARD, an anti-inflammatory, a pain pill, a multivitamin, a calcium supplement, a probiotic capsule, and four tablets of Vitamin D. Ten pills to choke down with breakfast, eleven if the pain is really bad and I need a double dose. (This week I also have three steroid tablets and a hormone pill. Fourteen pills.)

9:50 am- I shuffle around my little kitchen, trying to fix myself something for breakfast. The simple option is cereal, but that doesn’t usually provide enough tummy cushion for all the medicine, so if I go that route, I’ll be nauseous all day. If I can muster the energy, I try to scramble up a couple eggs, the protein helps curb the queasy feeling.

10:15 am- I’ve eaten breakfast and am now in my trusty recliner with a blanket over my legs. No matter the temperature outside, my legs and feet are always cold in the mornings. Depending on my mood, I find something on TV or I put on some music for background noise. I’ve hit my stride, this will be the most productive part of my day. I use our laptop to catch up on emails, work on stuff for the Spoons 4 Spoonies site, and write/blog; all while on hold with the doctor’s office or medical transportation to set my appointments for the upcoming week. (I use medical transportation because it’s unsafe for me to drive. Between the nerve damage in my feet and being on pain medication, it’s just not a good idea.)

11:00 am- Another bathroom break. I stop off in the kitchen for a drink on the way back to my chair, even though this means I’ll have to pee again soon. It’s important to stay hydrated, many of my medications can cause nasty side effects if I’m not staying on top of my liquid intake. It’s also helpful to group activities like this, it saves on pain and using too many spoons.

12:00 pm- My eyes are starting to blur from looking at the computer screen, and my wrists are screaming at me. I set the laptop aside and after yet another trip to the bathroom, I curl up on the couch for a cat nap.

1:30 pm- I awake with gritty eyes and shuffle hurriedly to the bathroom. It’s always hardest to move right after waking and I barely make it in time. I feel the tears of frustration sting my eyes as my body yells in pain. This morning’s pain pill is wearing off and I can’t take more for another 30 minutes. That might not seem like a long time, but with joints that feel like grinding broken glass, it is an eternity.

1:35 pm- I have to start thinking about what I’ll make myself for lunch. I need to have it ready as close to 2:00 pm as possible so I can take my next pain pill. After weighing my options, I’ll probably settle for chicken nuggets with crackers and cheese slices, it’s easy and my go-to. If I have some in the fridge, I’ll add baby carrots, celery stalks, or cucumber slices.

2:00 pm- Settle back onto the couch with my lunch and my afternoon pain pill. About this time every day, I start to feel really foggy. It’s hard for me to focus and if I try to force myself to push through it, I will get a crippling headache. Though I have RA, this phenomenon is often referred to as “Fibro fog” and is fairly common in those with various chronic pain conditions.

2:30 pm- The pain pill is starting to kick in and I’m groggy. It’s getting hard to hold my head up, so I lay back down on the couch while trying not to feel guilty about the dishes that are piled in the sink or the baskets full of laundry that needs to be washed.

2:30 – 4:00 pm- I doze off and on while watching TV.

4:00 pm- After another trip to the bathroom, I shuffle out to our mailbox. By now, most of the joint stiffness has receded to a manageable point. I pop in my Pilates or yoga DVD and do some stretches. There’s a lot of poses I have to skip, anything that is weight bearing on my wrists is out of the question. My doctors have me on a limited exercise routine because I have a high risk for fracture. It’s a catch 22 of needing to exercise but not doing too much to hurt myself. Really, all of life as a spoonie is a balancing act.

4:45 pm- I’ve finished my stretches and am trying to find the strength to pick myself up off the floor. I am exhausted and while the stretching felt good, there are shooting pains in my legs and my feet have pins and needles.

5:00 pm- I’m finally standing again. Another trip to the bathroom. Now it’s time to start thinking about dinner. My fiance will be home soon and I like to have it ready for him, if I can. If I haven’t set something in the crockpot earlier in the day, it must be something easy. I forgot the crockpot today, so it looks like it’s going to be leftovers. I just don’t have the energy to stand and fix anything else. I collapse back onto the couch.

6:30 pm- My fiance is home. We fix our plates and tell each other about our days. I’m usually a chatterbox and scattered, jumping from topic to topic. Unless a friend has stopped by, this is the most of my social interaction for the day and I tend to go overboard. I can see in his eyes that he’s getting overwhelmed and I try to stem the avalanche of words pouring out of my mouth. Oh, almost forgot, it’s time for my evening pain pill.

7:00 – 10:00 pm- We watch TV together, or a movie. If my hands aren’t too swollen, I’ll work on a craft project. Sometimes we’ll play cards or a board game. It’s usually low-key since he’s tired from a day at work, and my body is starting its daily decline. At 9:30 pm we set out my monthly shot. They must be refrigerated, so we have to let it come to room temperature before my injection.

10:00 pm- We start to migrate to our bedroom. I grab something small for dessert or a snack so I can take my bedtime medications. Two potassium tablets, the DMARD, the anti-inflammatory, and a pain pill. Most nights it’s a double dose of pain medicine as my day catches up with me and this is when my pain is at its highest. So that’s another five – six pills. While I swab my thigh with rubbing alcohol, my fiance preps my injection. One, two, three deep breaths, a pinch, twenty seconds, another pinch, and I’m all done. We clean the area to avoid any infection and cover it with a bandaid.

10:15 pm- 12:00 am- I will lay in bed and toss about, trying to find the position that hurts the least. All of this movement after my injection means I’ll have a knot in my thigh come morning, but I can’t help it. My body is restless. I’ll play games on my phone or putter on social media while I wait for my medicine to kick in and make me sleepy. I’m exhausted and beyond tired, but my eyes just don’t want to close right away.

12:00 am- My eyes are finally drowsy. After a final trip to the bathroom, I make sure my phone is plugged into its charger and I call it a night. I’ll hopefully get a solid three hours of sleep before my bladder will wake me up to start all over again.

Obviously there are variations to this routine. Sometimes I have a doctor’s appointment in the afternoon. Sometimes we need to go to the store in the evening instead of relaxing at home. Sometimes we have plans. My injection is only once a month. But the idea here was to show a typical day, the little ins and outs of my life with RA and IC.

Be Gentle With Yourself

In a recent conversation with my future father in law, we were sharing our frustrations with the fatigue that often accompanies chronic illness.

He was beating himself up for needing more naps lately and for a few moments where he had dozed off at his computer. As he spoke, I was reminded of the first months after my diagnosis when I would often get angry with myself for not being at the level of energy and accomplishment that I was used to. It was hard to reconcile this new “me” with the standards I had come to expect from myself.

Human beings are, for the most part, creatures of habit. We love our routines and when something comes along to throw a monkey wrench in things, we feel rattled. When that monkey wrench becomes permanent instead of temporary, we flounder while trying to find our new “normal.”

I can honestly tell you, it wasn’t until nearly a year after my diagnosis that I felt I was mostly comfortable with my new lifestyle. And truly, there are days where it still eats at me that I will never be the person I used to be. There will probably always be times I long for my former lifestyle. And that’s okay.

The bane of it all is that while chronic illness nearly demands a life of routine and schedule, it is also extremely unpredictable. So while we may plan things out for ourselves in order to save rushing and unnecessary pain and frustration later, something as simple as waking up in the wrong position can throw all those carefully laid plans out the window.

It’s those days that we need to be extra gentle with ourselves. We need to remind ourselves that it takes energy for the body to heal itself and those of us battling chronic conditions are in a near constant state of healing. Our bodies are always trying to get back to that “normal” and it’s taking all of our reserves. It’s not giving in or giving up, it’s being realistic. It’s realizing that we will have good days, medium days, and bad days. It’s about finding how to live our best life possible on all kinds of days.

There are tons of pamphlets, books, and helpful sites out there full of tips reminding us to rest and take it easy. What we forget is when we’re resting, we need to not be angry or frustrated with ourselves for needing that rest. The mental energy wasted beating ourselves up about that nap we took just further takes from our bank of spoons.

I know it’s not easy. And yes, there are days where I still get frustrated with myself. But as I continue on my path moving forward, it is getting easier and easier to forgive myself for not being who I always thought I would be. For not being that former self. And it’s even easier to start to like the person I am becoming.

Have you been kind to yourself today or are you beating yourself up for your body’s needs? Maybe you should give yourself a break and have something sweet to make you smile.

Me? I’m going to have some frozen yogurt while I prop my feet up. Because I need it and that’s okay.

New Year, New Goals

I realize I’m a little late to the party here, but all my upbeat peoples on the tweeter machine tell me better late than never, so here I am.

I’ve always been a fan of the New Year holiday. I’m one of those not-so-popular people who view it as a fresh start. For as long as I can remember, I’ve watched the ball drop on NYE while setting new goals for the next year. Some were silly, some were vain, some were important, all were life-changing.

Because that’s what it’s about for me.

I use the upcoming year to turn the page in the book of my life. It’s a time for plot twists and new chapters.

So I’ve been looking at life and trying to decide what kind of new paths I want to walk down in 2014. I have ideas for my blog, for Spoons 4 Spoonies, for my crafting, for my writing. I have plans to better live life with chronic illness. I’ll also be planning our wedding this year, which is another set of goals.

Because I love lists almost as much as Dawnie does, and because her list reminded me that I hadn’t yet put my goals into words, here we are.

*Each day I will do something that makes me feel better about myself. I will wear people clothes, do my hair, or put on mascara. I will paint my nails or give myself a pedicure. I will remind myself that I don’t have to “look sick.”

*I will grow my blog. I want to be able to reach out to more people. I want to keep writing honestly while still showing the good in the world. I want to interact with my readers more, and within the blogging community.

*I will create a routine and schedule for myself. I will better use my time so that all of my projects are getting my attention, while still taking care of myself. I will be better organized.

*I will continue to live the best life possible while still taking care of my health. Now that I am insured, some treatment options that weren’t available to me before are a possibility. I want to explore these options and find the best plan that works FOR ME. I want to get back into yoga and pilates.

*Most importantly, I will LIVE. I will enjoy things, even if they might cause me to hurt later. I refuse to be held captive by my illnesses. I will try new things and rekindle old hobbies. I will go on dates with my fiance. I will spend as much time as possible with our favorite couple. I will make new friends. I will branch out.

I WILL LIVE.

What will you be doing in 2014?

My Focus On Healing

I’m not entirely sure where the time went, but it’s already the middle of October.

Some of you may remember that with Tracie‘s help, I chose to spend this year focusing on one word: Heal. While this year has provided many roller-coaster rides, I would still say that I am achieving my goal of healing both physically and emotionally.

Probably my biggest strides in healing happened when Cindy-Lou sparked a small idea within me that grew to be the Spoons 4 Spoonies project. I took the hurt I was still feeling and turned it into a way to share love. Though I will always miss Misty, knowing that she is still touching lives through me gives me a peace I didn’t think was possible.

I also owe huge kudos to Dawnie for her help on this path of healing. Her kind way of speaking the things I REALLY need to hear helped me to move forward from people that were still hurting me. Her gentle nudges gave me the push I needed to focus more on myself and my health. With her and Teala’s encouragement, I was able to drop around 30 pounds this year. For anyone battling chronic pain, this is a huge accomplishment. My illnesses limit what I’m able to do in terms of exercise and diet changes. But my lovely ladies helped me focus on what I CAN do and the weight melted off without my noticing. When I was weighed at the doctor a few weeks ago and saw that I was under the dreaded number for the first time since I became ill, I wanted to happy dance.

I’ve also made some strides in managing my illnesses this year. It might not seem like it, since I spent the better parts of August, September, and even October, in and out of the hospital and doctor’s offices. The difference is that I knew there was something not right and I didn’t rest until we found an answer for my symptoms. With a diagnosis, I’m now able to find the treatment that works best for me and move forward.

I’ve also taken a more active role in my health. I’ve learned that I have a say in how I manage my illnesses, and I’m making sure I am researching all options available. I’m trying new things and liking what I see. Yes, I still have achy joints. But I’m learning to focus on healthy ways to live with the aches.

All of these things have added up to better mental health. Yes, August and September were extremely stressful, but all in all, I am happier. Taking more control over my life and my health has helped to ease my stress and anxiety. Lower stress levels are also better for my overall health…who knew?

With November steadily approaching (Seriously! Where did this year go??), I’m looking forward to another Month of Positivity as well as the holidays. There’s a strong possibility that we’ll be spending some holiday time with my family, which I haven’t done since my fiance and I started dating. I’m nervous but also looking forward to making new memories to replace some of the unhappier ones.

I’m still focusing on healing, the year isn’t over quite yet. But I am feeling a little better each and every day…