Come On, Get Happy

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As a stay-at-home mom I watch a lot of morning television and this morning something on the TODAY Show really caught my eye. Three secret numbers to help you lead a happier life 5-3-1. A five minute meditations, write down three positives about your day, and do one act of kindness. You can read their article here. Come to find out one of my favorites from the TODAY Show team, Hoda Kotb, swears by this very practice. She always comes across and so very genuinely happy and I love that about her and envy that in her. 

Livin with chronic illness often makes happiness feel like a chore and I would like to change that by proposing a challenge. The 5-3-1 challenge. For the next 21 days I am going to commit to a five minute meditation, writing down three things for which I am grateful, and performing one act of kindness. 

  
I invite you to join me, especially if you are a fellow spoonie. It is easy to get sucked into a dark space when you’re chronically ill and it may take a little extra effort to come into the light but for your own well being, as well as for the well being of those around you, we need to try this. 

You can try this 5 minute guided meditation from the Today Show website to start with. I’ve also downloaded some podcasts I am going to try out, I’ll let you know if any of them seem helpful. 

Come on, get happy with me!

Four Ways to Enjoy Your Fourth When You’re a Spoonie

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  Nothing says summer quite like a good old Fourth of July barbecue. Hot dogs, hamburgers, potato salad, watermelon, beer, sangria, cupcakes, and more beer. Hanging out in the backyard with family and friends, watching the kids play and eating yourself into oblivion. It’s pretty near impossible to have a social gathering without food being a part of the occasion. Most people don’t think twice about it but people like me, have to really make a plan when food is involved. Pancreatic Divisum means I cannot drink alcohol and cannot eat anything without carefully considering if it’s worth the pain I’ll experience afterwards. It’s hard to avoid food all together so I’ll pick at the fruit salad and eat some watermelon but if I want to be able to enjoy that picnic as much as everyone else I had better stay away from the food. 

Here are four ways to enjoy your fourth when food or drink cannot be a part of your day and you don’t want to draw attention to the fact that you’re not eating. 

  1. Gather the kids for a game of freeze tag. The adults are bound to join in because no one can resist a good game of tag. If it’s super hot make it a game of water gun tag. 
  2. Organize the sparklers and decorations. While everyone is eating excuse yourself to get things set up for after dinner fun. 
  3. Start a watermelon eating contest. It’s usually safe to have a piece but offer to be the judge so you’re still part of the fun. 
  4. As the excitement of the day starts to wear on the kids (and some adults too) gather everyone in the air conditioning for a movie night. You’ll be the cool grown up who let everyone come in to cool off while masking the fact that you’re out of spoons and just need to sit down for a while. 

It’s hard to be the life of the party when you have no energy and explaining to everyone why you’re not eating gets tedious. Try to find ways to make yourself useful without standing out too much and jump in with the fun in other ways. This is a day of celebration and no body should be left out. Happy Independence Day!!

Soul Sister

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Today I got to connect with the only person in my life who knows exactly how it feels to be me. We crossed paths by complete coincidence around the time I was diagnosed and by some miraculous twist of fate, she has the same diagnosis. From that moment we shared a connection I didn’t have with anyone else. When you meet someone who has the exact same diagnosis that you do it’s a huge feeling of relief. To know that someone truly understands what it is like to live life with your disease is comforting. I wouldn’t wish what I live on anyone but to find her was like finding my soulmate. The only trouble is that Husby takes some offense to that so I’ll call her my soul sister. 😊

We don’t see each other often but she has become a very important part of my life. She understands the most intimate parts of this often ugly disease and we can talk openly and candidly about the way our lives are impacted. She knows what the pain feels like and the thoughts I have when I feel like I can’t get out of bed because she has those same days. She helps me feel normal even though we are both pretty far left of center in that department. She struggled much longer than I did to get a diagnosis and had I not met her I may never have gotten the care I did since she gave me the name of the doctor that was treating her. Without him I would probably be still floating around from doctor to doctor trying to find an answer to my symptoms.

She has walked a similar path to mine. She met her husband when she was healthy and he has stood by her as much as Husby stands by me. She has two children and works a full time and very demanding job. She knows the feeling of guilt when your baby is screaming in his crib and you can’t pick him up because of the pain. She and her husband have the same arguments about whether she’s pushing herself too hard or doing too much. She wakes up every day wondering how in the world she is going to find enough spoons to accomplish everything she needs to do. As a wife and mother she feels the weight of her family and their needs and puts them ahead of her own, often to her own detriment. We see ourselves in each other and share a bond that is invaluable. I am able to share with her thoughts and feelings that are almost impossible to put into words because the pain is indescribable.

When you’re a spoonie it is imperative that you surround yourself with a support network; doctors, therapists, family, and friends, but Soul Sister is in a category all her own. I wish we could see each other more often and spend more time together but life is busy and that’s understandable. Our doctors and therapists would probably balk at our conversations as they are mostly filled with complaints and commiseration but that is important to have. Neither of us has the answer to this disease and neither of us is getting better any time soon but we’re in it together and without her I don’t think I’d be where I am today.

How You Doin’?

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“How are you feeling?” A seemingly simple question that quickly becomes very complicated as soon as you are diagnosed with a chronic illness. People ask this question so casually and very rarely are interested in any more than, “I’m fine, how are you?” as the response. There are those who truly want to know how you’re doing but as a person with a chronic disease you have to weigh the pros and cons of giving a 100% truthful response. After all, who wants to be Debbie Downer all the time?

It usually depends upon how well I know the person and how much they know about my disease. On the other hand, it gets exhausting having to constantly explain what is going on with my treatments and it’s quite depressing when the answer is never good. I am never feeling great, I am never feeling well, I am never feeling energetic or carefree. I am feeling, tired, stressed, and anxious. I am in a constant state of pain and discomfort. I am not able to eat without worrying about how my body will react and to top it all off, I’m the mother of a toddler. Enough said!

Then again, it’s also rude to tell people not to ask. Most of my close friends and family really care and want to know how I’m doing but I don’t want to worry anyone when my daily reality just isn’t a pretty picture. So, when you want to check in with someone who has a chronic illness to show that you’re interested and you care, try asking this instead: 

  • How are you coping? – When you live with an illness day in and day out coping strategies become a necessity. Check in with your friend, have they left the house lately? Offer to take them out for a quick shopping trip to the mall or Target (any other Target lovers out there?) Be careful when asking your friend out for coffee or lunch, certain illnesses do not tolerate food well. Do they need help getting the grocery shopping done or picking up prescriptions at the pharmacy? Running errands can be very taxing and your friend may not have enough spoons available to accomplish these tasks. Offer to pick up some staples or run to CVS. 
  • What are you doing for yourself to make yourself feel good? – It is very easy to fall into a funk or even depression when you’re living with chronic illness. Tell your friend you’re coming over with a new movie or bring over supplies for an at home mani/pedi. It’s really hard to ask for help when you’re in the throes of a flare up so try and gauge your friend’s reaction and make a suggestion that suits their interests. My bestie sent me a new coloring book and crayons the last time I was in the hospital and it was just what I needed to brighten my day. 
  • When can I come over to give you a break? – Don’t ask to come over, tell them you’re coming. In my case it’s super helpful when someone comes over and takes my toddler for a walk or to the playground so I can rest. Other times having someone come and just take over for a couple of hours is a God send. Depending on how close you are you will know what’s appropriate but the key is not to ask what you can do but to tell your friend what you’re coming to help with. Again, it is really difficult to ask for help when you’re not feeling well. Even from the closest of friends. Tell your friend you’re coming to take the baby for a couple of hours or that you’re coming with a lasagna and then do the dishes and clean the kitchen. 

The most important thing to remember when someone in your life is living with a chronic illness is that the most important thing for them to know is that you care and that you haven’t forgotten about them or their illness. Especially when dealing with an “invisible” illness, it’s easy to pretend it’s not there but it is. It is always there and is always a part of who they are and they can never forget about their disease so you shouldn’t either. 

Husby

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Hello World, I’d like you to meet Husby. Trying to compose an introduction of sorts for him has been a little more complicated than I anticipated. I keep writing and rewriting because the words just don’t seem to be enough. Can I really do justice to who he is and what he means to my life? I suppose it’s the thought that counts so here goes.

Husby and I have been riding the roller coaster of life together for almost nine years and have been married for two and a half of them. We met before I got sick and that is probably one of the biggest reasons we have weathered this storm together for so long. We had two years together living life as a couple of carefree twenty somethings before everything changed. Even on the worst days now, we remember what life was like before and have something to work towards. He has been to every doctor’s appointment and weighed in on every decision relating to my care. There are lots of supportive spouses and partners out there and it’s really difficult to be a spoonie without some type of support person but Husby is extra special. I always knew that about him, and it’s definitely one of the reasons I married him, but since BooBoo entered our lives Husby has really stepped his game up and I am in awe of his strength. 

Husby is the only person in my world who has a full and complete understanding of what my daily life entails. He has seen me at my best and seen me at my worst. He is more than “my better half” or “my best friend” he is an extension of myself. He is my partner and my hero, my rock and my right hand. Without him, I am not whole. Without him, I wouldn’t know how to navigate life. There are so many layers and intricacies of my disease and he understands them inside and out. He can tell how many spoons I have left just by looking at me. He knows how much energy different activities will require and he always takes my needs into account. If we want a date night it has to be early enough or else I won’t make it through, if we go out to dinner we will have to go straight home afterwards because eating makes my pain worse, we can’t go to the movies because I can’t sit for that long, and the list goes on. The fact that I don’t have to articulate any of that to him makes things so much less stressful, especially when we’re out with other people. There are so many social activities that are just difficult for me to navigate. Having a partner who knows exactly what I can or can’t accommodate without me having to say anything is priceless. I don’t like to draw attention to my disease and it’s not something I readily share with people in my life so sometimes I have to “fake it” until I get to a point where I’m comfortable sharing my story. If Husby is there, I don’t have to fake anything. At the company Christmas party I can give him “the look” or simply say, “we have to go soon” and he understands. We can duck out without incident or drawing attention to our often early departure. 

I don’t know if I would be where I am today without Husby, and that’s the bottom line. There is no doubt in my mind that we were meant to walk this road together and while it is often bumpy and has some unexpected detours we always come out stronger on the other side. Having a true partner and companion is priceless and without him I truly wouldn’t be whole. 

A Spoonie’s Never Ending Story

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I am currently in the process of filing an application for Social Security Disability Insurance. It is a long, complicated, difficult process. I keep filling out and submitting forms and then another form arrives in my mailbox. The one I am currently working on is over twenty pages long. As a spoonie not only is my illness invisible but it is multi-faceted and difficult to explain. This particular form is asking me to explain what I do all day. Ummm, I have a toddler, enough said! However, I don’t think that answer will suffice. I am being questioned about my ability to complete tasks such as meal preparation and house cleaning. These questions are not as simple as they seem. It is difficult to explain not only what I do all day but how I do it. I complete tasks to the best of my ability often because not completing them just isn’t an option. My son needs to eat three meals a day, not feeding him isn’t a choice. BooBoo loves to eat, just as much as Husby does. If I don’t prepare food for him then he doesn’t eat. Laundry doesn’t do itself, BooBoo can’t dress himself, or drive himself to gym class. I have to do all of those things for him, it’s not a choice, it’s a must.

Before I got sick I worked full time, forty plus hours per week in the field of special education. My job was both physically and mentally demanding. After I was diagnosed I continued to work long hours until it just got to be too much. Before we were married, Husby and I decided that I should make some changes so I started a part time position in the same field. My days were long but I was only working three days per week. After BooBoo was born I stayed home for eight weeks and then went back to work. I wanted to work because I loved my job and my students. I wanted to work because it was something I enjoyed doing and I was in a position I had worked hard to obtain. After two weeks, which was really only six days of work, I landed in the hospital with an acute episode. After a three month stay I had missed the rest of the school year. Husby and I sat down with my doctors and discussed my situation.There was nothing that could be done to cure my disease and we came up with a plan for managing my symptoms but there was nothing we could do to make me better. At the time, my life was divided into three parts; my health, my family, and my job. It was starting to become clear to all of us that I could no longer manage to keep all three balls in the air at the same time. I couldn’t stop managing my health, and sending BooBoo back obviously wasn’t an option which only left my job. I would have to give up working in order to maintain my health and my sanity. It wasn’t a very difficult decision to make because it was the obvious choice. I miss working but know that I really am not capable of managing a job with everything else I have going on. It never occurred to me that I should apply for disability insurance. That’s for old people isn’t it? I’m not old. I’m not an invalid. I’m not bedridden or terminal. I’m young, vibrant, and young! People my age can’t possibly qualify for disability, right? Apparently they can. Apparently I can. All of my doctors agreed that this is something I should have done a year ago.

It took me a while to feel OK with the idea. I feel like I’m giving up. I feel like I’m saying that I really can’t do this. I know I can’t but filling out forms just makes it seem so much worse. This whole process has been extremely overwhelming and it doesn’t seem right that someone with anxiety has to fill out such anxiety inducing paperwork. In fact, at this very moment, I am procrastinating. The question that is tripping me up is “List household chores, both indoors and outdoors, that you are able to do.” That is not as straightforward as it may seem. Within my own head I have difficulty determining my own capabilities. I know I have yet to discuss the specifics of my disease and physical illness but one of the components of my illness is anxiety and depression. I have had to deal with mild anxiety and depression for most of my life but my physical illness exacerbates them. I was also diagnosed with perinatal and postnatal anxiety and depression. It has become one of those “which came first, the chicken or the egg?” situations. Does my pain give me anxiety and make me depressed, or does my anxiety and depression make my pain worse? Actually, the answer is, both. It’s a vicious cycle to which there is no end and no answer. This is what is making all of these questions so difficult to answer. There is no right or wrong answer. There is no simple answer. I would much rather have to interview with someone from the SSA office than sit here and try to write out answers to this never ending questionnaire. Although, having to sit down with a total stranger and explain my life would probably give me anxiety too. I guess this is the lesser of two evils.

“Procrastination makes easy things hard, hard things harder.” -Mason Cooley

 

Hackers Gonna Hack

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I’ve always enjoyed writing and in the past always preferred writing long hand in journals or on legal pads. As time went on, and I found myself sitting in front of a computer day in and day out, I converted to typing as the main medium for my writing. I’ve never liked using tablets or smartphones for writing because I am much slower using my thumbs than I am with my hands placed delicately on the “home” keys. When I saw that Word Press had an app I thought, “I’ll never use that because it would take me forever to write anything!” Yet, here I lie, curled up in the fetal position due to excruciating pain and typing with my thumbs. I am in too much pain to sit up at my computer and I felt it was important to document with a blog post. I guess this app could come in handy after all. 

I spend a lot of time curled into the fetal position. My disease wreaks havoc on my body in a number of different ways and pain is one of the darkest demons I face on a daily basis. My disease cannot be cured, the problem cannot be fixed, and I am not going to get better any time soon. My doctors and I have worked to manage my symptoms with various medications and treatments to allow me the best possible quality of life. After six years of struggle I am finally taking a combination of medications that help me control my pain enough to allow me to function. 

Today I’m struggling. I’m struggling to be normal, to be “mom”, to roughhouse with BooBoo, to cook dinner, and to eat. I’m also struggling to write, not because I’m typing with my thumbs but because my mind isn’t  working as quickly as it could if my body was healthier. We had a wonderfully busy weekend as a family. My mother was visiting from out of state and we took BooBoo to a bunch of different events. It was so great to spend time with my little family and I loved every bit of it. The downside is that I ran down my battery power completely and today I really didn’t have much to run on. When that happens my disease can sense my vulnerability, just like a hacker finding a weakness in your firewall, and attacks. My disease finds those weaknesses and suddenly I find myself trying to recharge without plugging into the wall outlet. It doesn’t work but there’s nothing I can do except continue to take my medications and supplement with as much rest as I can find the time for. Sufficient rest is difficult to come by which is only going to make tomorrow more difficult to manage than today. It is a vicious cycle. I don’t have all of the answers but one of the things I have learned is that I need to ask for help. It is definitely not easy to do and I do not seek help as quickly as I should but I am getting better. 

I have taken my nightly pills and will hopefully be able to get enough restful sleep to give me the strength to greet tomorrow and all of the challenges it will present. We have made plans to meet some of BooBoo’s friends both tomorrow and Wednesday. I want to have the energy to make it to these play dates and will have to sacrifice energy allocated for other activities in order to pull this off. But I will make it happen for BooBoo to be happy because after all, isn’t that what motherhood is all about?

Never Leave Home Without Your Phone Charger

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One of the ways I like to explain living with a chronic illness is by comparing it to your iPhone. Each app uses a certain amount of your battery life and it can vary depending on whether you’re using cellular data or WiFi. Then you have those apps that run in the background (which you often forget about) that sneakily drain your battery. You think you have enough to get you through the rest of your day and then all of a sudden you realize you need to get plugged into a charger STAT! You like to start your day with a full charge but every once in a while you forget to plug in your phone or your charger wasn’t plugged into the wall (I’ve done that more than I should admit) and you wake up to only 50% charge of your battery. That’s life with chronic illness. Being in bed, sleeping peacefully is my equivalent to being plugged in and charging. As soon as my feet hit the floor in the morning, I am unplugged and running on battery reserves. Certain activities require a small amount of battery power; getting dressed, putting in my contacts, washing my face. Other activities require a larger amount of power; making breakfast, getting my toddler dressed, doing laundry, showering. Then there’s the hidden apps running in the background, my invisible disease. It is constantly and discreetly draining my battery reserve. Then, there are the days that I don’t wake up with a full charge because I did not get a full, peaceful, and restful night’s sleep. Unfortunately, this is most nights. The first reaction most people and my doctors have is, “Oh! Well of course you don’t sleep, you have a toddler!” For the most part, he is not the reason I don’t sleep. We have been blessed with a beautiful child who has always been a good sleeper. The most common reasons I don’t sleep are anxiety, pain, bathroom breaks (thanks to that postpartum bladder) and pain. Did I mention pain twice? Well it’s a really big factor. I know that everyone has those nights where they don’t get as much sleep as they would like but, when your battery is really low and doesn’t get that full charge it takes even longer for it to fully charge up the next time it’s plugged in. If I keep borrowing time from the next night, by the end of the year I’ll be two weeks short. That just doesn’t work.

Last night was decent. I only woke up twice and was almost ready to wake up when BooBoo called for me this morning. We had a play date scheduled for the playground at 9:30. I knew that this was the plan but still had to talk myself into not cancelling. That’s another unfortunate side effect of being a spoonie, you second guess every activity, wondering if it’s the best use of your resources. Anyway, I gave myself a pep talk and started the hour long process of getting us out the door. This morning, “getting out the door” required getting BooBoo’s breakfast and milk, getting both of us dressed, straightening my hair, and of course wrangling the toddler to get him dressed as well. OK, that’s not too bad, an hour should be more than enough time. Hold the phone! Don’t forget to put dinner in the crock pot, you have company coming tonight. Wait, WHAT?! OK, kick the stress up a notch and move a little faster to get the vegetables cut and the roast in the crock pot and everything else done and get out the door with one minute to spare. Phew! Get into the car after chasing BooBoo in circles and do a systems check. Of my spoons, not the car. The last minute energy upgrade took a little more battery life than I had originally planned but we should still be good to go to the playground for an hour or so. Thankfully we didn’t hit much traffic and the ride wasn’t longer than it needed to be. Why is that even an issue? Because even driving requires spoons, sitting in that position is very uncomfortable for me and driving for more than twenty to thirty minutes at a time is not good.

We reach our destination and BooBoo is off and running. I like this particular playground because he can be fairly independent and it’s small enough where I don’t spend all of my time running after him. Unfortunately he is not yet of an age where I can just sit on the bench and watch but I also don’t have to follow him up the playscape anymore. I get to just wait at the bottom to catch him. We’re doing great, he’s happy and burning off some energy, I’m feeling well enough to get through this and have something left over. However, as anyone with a toddler should know, expect the unexpected. BooBoo took a tumble after a run in with a swing. He was fine but the extra energy required to handle the situation and the aftermath left me running close to empty. All I had to do was get us home so he could take his nap. I always rest while he naps and try to recharge as much as possible. It’s never enough to get a full battery but it’s usually enough to get me to bedtime. BooBoo didn’t cooperate today. No nap. Mama isn’t getting to recharge today. Unfortunately, I can’t just plug my phone in while I go about the rest of my day, duty calls. BooBoo doesn’t stop, the world keeps turning, life keeps moving. What can I do but try to limp along?

We’ve worked hard to get a support system around us and luckily today I had reinforcements scheduled to come and play with BooBoo. The thing about days like today is the same as when you run your phone down to zero battery and it shuts off. You can plug it in, but it won’t turn on right away. Today, that’s me. I’m trying to recharge but am having trouble turning on. I’ll do it because I have to (unlike your iPhone that doesn’t listen when you beg and plead for it to come back on). I’ll do it because company is coming. I’ll do it because BooBoo is banging on my bedroom door saying, “Hi Mom, hi Mom, Mom, Mom, Mom!” I’ll do it because it’s what you do. When you’ve given everything you’ve got you give a little more until someone tells you that you can stop. For me, that person is my husband. Husby is the one who knows how much I’ve got left by the look on my face. Husby is the one that comes home and can handle everything exactly right so I don’t have to waste any energy worrying about how things are going. Husby is my hero and without him, nothing would be possible. He deserves his own post for you to truly grasp how wonderful he is but for now, know this; without that one person who is your hero, your rock, the only one who truly understands your disease and all of the ugliness that comes with it, without that person, you will never have a shot at getting a full charge. Without that person, you will always spend energy worrying about things getting done. Unless you have someone who is an extension of yourself, you will never truly get to rest. Husby is an extension of myself and without him I am not whole.

“The best thing to hold onto in life is each other” Audrey Hepburn

The Beginning

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The blank page is very intimidating. The cursor sitting there, blinking at you, waiting, waiting, waiting. What are you going to write? How will you fill the blank space? It’s a daunting task. Do you want to be profound, humorous, prolific, entertain, make a statement? What do you want to say? What will people think? What will they say? Will anyone care? The blank page hold all of these questions but no answers. You will not have the answers until you write. And so it is with some anxiety and trepidation that I dive into the world of blogging.

Part of me wonders if my story is worth telling and an even bigger part of me wonders if my story is worth hearing. I suppose it doesn’t really matter but you can’t expose yourself to the world without having those thoughts. Making the decision to write came easily. Making the decision to write a blog was a little more difficult.

I am Mary. I am a wife, a mother, a daughter, a sister, and a friend. Not one of these roles is any greater or more important than the next. I try and give to all those whom I love and cherish. Some days I wear all hats, others just a few, yet all of these facets of my life make up who I am. There is another part of who I am that I failed to mention. I am a spoonie. That is a hat that is permanently affixed on my head on which all the others must balance.

What is a spoonie?

A spoonie is a term that refers to someone who lives with a chronic or invisible illness. The term was coined by Christine Miserandino of the website butyoudontlooksick.com and you can find her original post on the spoon theory here. The specific diagnosis really doesn’t matter except that it is generally something that isn’t physically noticeable, at least to the naked eye or the uninformed. A spoonie is someone who doesn’t look sick but who has to fight every day to lead a normal life. The basic premise of the Spoon Theory is that each one of us has a certain number of spoons to use in a day. Every activity requires any number of spoons to complete. Everything from getting out of bed, to showering, to making lunch, to eating, to driving requires spoons. If you run out of spoons then that’s it. You’re done for the day. You can always borrow spoons from the next day but then you won’t have enough tomorrow. What if you get a cold, or a virus? You have to make sure you have enough spoons to fight those battles as well.

How many hats do you wear in your daily life? We all have many things to balance and juggle and often feel as though we are being pulled in many different directions. No one person’s battle is any more important than the ones of the person beside them. What is important is that we each recognize the other. I am writing not because what I have to live with makes me better than others but because it makes me different and won’t the world just be a little bit better if we were well educated about and respected all of the things that make us different?

“We all live with the objective of being happy; our lives are all different and yet the same.” -Anne Frank