Grief is a Monster

 I have decided Grief, true grief, is a monster. A sly, imp-like monster wandering, romping and ransacking the rooms and hidden cupboards in my mind.

I thought I understood grief. We don’t go through life without some form of it. The loss of a pet as a child, losing a grandparent, being there as a friend gets to the end of their battle with cancer. Even small griefs like losing a friend over something stupid or a job. But most of the time, our minds are preparing us for the flood of emotions that come with grief. We cry, we get angry. Then we remember and laugh a little and then cry a little more. And we move on with life. We sit on the floor of the home our mind, and we gently fold and tuck away the sadness and memories. Occasionally visiting and reminiscing before putting them away again.

Then something happens and you lose someone close to you, someone who was an integral part of your being, suddenly with no warning, no rhyme. And the true nature of grief descends.

I lost my sister. WE lost our sister. One minute it seemed she was fighting with me in a text, then she was gone. Our family is irrevocable altered. What was 9 siblings is now 8. And I don’t know what to do with that.

I have, all my life, compartmentalized. Unhealthy or not, I have survived a lot of trauma that way. But Grief is having a field day in my memories right now. Just when things are quiet, when my mind is on some daily task, Grief digs around in my memory chest and throws a random memory out that destroys my calm.

Grief reminds me I lost the Dolly Parton to my Kenny Rogers as we sang “Islands in the Stream” at the top of our lungs when we were young.

It dumps in my lap the times I made funny faces and did goofy skits for my sister and her twin at night before bed. It laughs in her unforgettable laugh.

 When I get dressed it slaps me in the face with the many teenage fights over clothes and the many, many times I was the photographer for her “modeling” shots.

When I am trying out a new moisturizer, Grief yells at me “you should tell your sister about this…oh wait…” and runs off to dig for more, leaving me frozen and choking in a puddle of hot tears.

Sitting at my desk I look up and Grief forces my eyes to the pictures of my nieces and nephew who were so much like my own kids and reminds me they don’t have their mom anymore.

Grief follows me to my car and shoves in my face the time I had to drive a monster truck to my sister’s house because I locked myself out with the wrong keys and shows me the look of astonishment and pure amusement that shined on her face as I raced up her driveway in this giant blue and yellow truck.

I worked hard putting those things away. Tucking the sorrow into a suitcase of feelings, sitting on it to close it, binding it with rope, shoving it into the back of a closet and stacking stuff around it. Hoping that it will sit there until I am ready to open it. But Grief knows that the only way that will open is if I am looking for something else. Grief presses on the bindings like squeezing a water balloon waiting with hushed anticipation for it to burst. Sometimes picking at threads that are pushing their way out of the seams and then Grief grabs hold and pulls. Handing me pieces of a tapestry that I don’t want to see. What do I do with this handful of painful threads?

How do you live with Grief? I want to punch it in it’s stupid face. Kick it into a corner and wall it up. But now it has free reign in my mind and is gleefully sorting and shuffling through my life.

But maybe Grief in all its mischievous doings isn’t truly meanspirited. Maybe Grief is trying to feed me small bits of memory to slowly release the pressure in the suitcase of emotion until the whole is more palatable.

I don’t know. All I do know in this moment is that Grief is the Monster under the bed, behind the shower curtain and in the dark closet. Grief is digging and searching around in my mind and pulling out memories long cataloged away. Grief is the weight sitting on my chest, stealing my breath at odd moments and pinching me awake in the middle of the night.

Grief is the Monster.

My Pandemic Year

 Thinking the other day, I realized that is has been a full year that I have been working from home during the Covid Pandemic. Not only working from home but doing everything else from home.

There are a lot of things that I learned about myself and those around me.

I hear people talking about Covid fatigue, pandemic depression, and other catchy words to mean we are all effected in some way physically, mentally and emotionally.

Trying to navigate simple day-to-day tasks seems somehow almost insurmountable. For me, I have realized that I am a seriously bad procrastinator when it comes to things I want to do and even with things I need to do. Dishes? Blah. Laundry? Ugh. Showering? Maybe.

Early in the pandemic, I thought that it was nice. I am home, not driving 2 to 3 hours a day. More time to accomplish all those crafts and projects I want to do. Sounded almost like a mini vacation. Working was fun in PJ’s or comfortable clothes. Not putting on makeup and doing hair saved time. The first month or two went smoothly. I can do this! I told myself.

Then we hit month 3. Month 4. Ok. I need to practice self-discipline. Wake up early, set the coffee pot nightly for the day. Keep a routine. Change out of PJ’s every morning and at least look like a living human. Limit social media screen time because all the information, misinformation and hatred and rhetoric were just making me angry and effecting my attitude.

Month 5 brought an almost desperate need do something creative and to connect with people more. Good ideas, like collecting greeting cards and stationery to write letters. I even ordered cool pens. Coloring books galore. I found my dream project, a huge dollhouse and stocked up on things to start designing rooms. Ordering comfortable clothes that are also “out of the house” worthy.

And it all sat. I would stare at all the fun things I wanted to do and could not find within me the energy to do something with them. I overwhelmed myself with projects.

On top of all of that I am still dealing with health challenges that began, for the first time in an awfully long time, to really beat down my mental health.

I have always prided myself on my ability to bend and flow with change. Life is constant change, and I am usually faced with one drama or struggle after the other. For things I have no control over I just adjust and go with it. It never really caused me to skip a beat. But being locked down showed me that a significant part of my ability to manage my life was the ability to not think about it because I was in constant motion. When that stopped, I was faced with the need to really take a hard look at what was happening around me and in my mind.

So, now I need to figure out how to manage things with a much smaller circle. My husband and daughter are my rocks, but it is not fair to lean on them with everything because they also need a pillar to lean on at times.

We all are trying to figure out how to adjust our daily interactions and communication using an almost fully virtual environment. And it really is not the same. Shaking a hand, smiling face-to-face, offering a hug to someone who needs one is really under appreciated. In-person interaction is much more important than realized until we did not have it.

So how do we do this? How do we adjust our minds and surroundings to protect and strengthen our mental and emotional health?

I have really learned that I need routine, I need to push myself to function and function well. Luckily, I was able to maintain working during this time and having a schedule daily does help. But that time between waking and working and working and sleeping is difficult to fill. It shouldn’t be, but there is this emotional exhaustion that seems to block the internal drive to do things.

Being on the go constantly took over so much that suddenly having more time is overwhelming. It should be a good thing. Time for family, time for self-care, time for things that have been on the back burner for a long time. But reality hits and there is this wide-open void of time to fill, finding a place to start is much more difficult than I thought it would ever be. After years of a fast-paced routine, coming to a complete stop is jarring and almost impossible to grasp. Now I must find ways to fill that space and I was so used to my days dictating my life, that learning how to control and dictate my own time is daunting.

 Have I found a solution? Not totally. I am a continual work in progress. But a few things I am working on are below.

1.)    Personal accountability. I am driven by routine. I know that about myself. But usually, a routine dictated by outside forces. Schedules. So how do I do this for myself? Well, I started with setting alarms on my phone. Reminders to wake up, set the coffee, stand up, stretch, write a letter, read a bit. Etc. I ended up getting a smart watch which seems silly but works well for me. It buzzes and alerts me all day. Tells me when it’s time to get off my butt and stretch or in some way move my body. I do different things. Near my desk I have an exercise ball, some small weights and an exercise band. If I cannot really leave my desk area for long, I do different simple stretches and moves. I do this every hour. My watch is now my coach.

2.)    Slow down on social media and the news. This was a big one for me. And it still is. Early in the pandemic I was glued to the news reports daily checking on the virus updates. Then the political climate heated up and I got incredibly involved in discussion groups and news updates. I tend to be passionate about people and justice or injustice. And a lot of the negativity and vitriol I read and was even on the receiving end of, really dug its claws into my mind and I think damaged my psyche somewhat and led to a worsening depression.

3.)    Do not be afraid to take time for self-care. And by time, I mean any way you can. Hide out in a bath for 10 minutes with music, take a short walk with just your thoughts, USE vacation time you have. Do not store it up hoping to use it later. Even if you have to plan a stay-cation, do it.

4.)    Connect with a friend or family member. Not a text, or a Facebook post, but a real phone call or facetime. A genuine conversation. On top of that, reach out with a card or a letter. Something simple can mean a lot.

5.)    Eat and sleep and dress (within reason) like you would every day if you were going to an office. Go to bed at a reasonable time and read or do something that calms the mind. Avoid screen time right before sleep. Plan a lunch, have your coffee, brush your teeth and change your clothes. Even if you change out of ratty sleep sweats and put on clean ones, that is ok. Just going through the motions of your routine helps.

6.)    Put yourself in someone else’s shoes. I am not the only one dealing with this and I try to keep that in mind. The analogy of the iceberg is true. All we know about someone is what they show us, but underneath there could be so much more going on. Have true empathy and compassion.

7.)    Find joy in simple things. I feed the neighborhood birds. Watching them on the feeders is calming. Putting seed out and learning the different species of bird is interesting and engaging.

8.)    Most importantly, do not overthink it or overcomplicate it. Lay things out in simple goals and steps to reach. Instead of planning this grand “thing” and quickly becoming overwhelmed and then depressed because you give up before you start, break things up into tiny, tiny steps. Want to write a letter to all your family members? Send a short, thoughtful note in a pretty card to 2. Then maybe 2 more tomorrow. It might not seem like much, but you will feel accomplished and ready for the next goal. Reaching personal goals, however small are like a happy snowball. The happiness and self-satisfaction will expand exponentially.

These are a few things. Working on them a bit at a time is helping me create a better me. A calmer me. A more productive me. It is not easy, but it is doable.

Hey, I Feel "Okay"...something's wrong...

As people with a chronic illness, we talk a lot in support groups about feeling bad, having a flare, medication side effects etc etc.Talking to others who understand your pain really helps us carry on a bit longer without breaking down. But we rarely talk about something I think most of us experience more than we admit. The feeling of waiting for the other shoe to drop, so to speak, the anxiety of knowing we might not feel this good for long, when we feel okay.

Now "okay" is subjective. I know personally for me, I don't remember a day where I felt 100 percent normal. I have pain every day, I still have to watch what I eat, the medications I take leave me feeling tired and out of sorts. But overall, I have been doing much better. I work full time and don't come home wiped out completely. I enjoy as much time as I can with my family, particularly my beautiful grandchildren. My amazing man and I got married this past summer. I clean. I thrift shop. I bake. I'm trying to start up a little side business with my love of baking. So, when people ask me how I am doing, I don't feel like a complete fake by answering with "I'm okay".

But one thing that lingers is the anxiety of wondering "when will I not feel okay?". Because I know there will be a day when I flare and am ill. And sometimes that worry can be insidious. It can eat into the joy I could have on days when I am feeling better than normal.

So, how do we deal with that? how do you push that little evil disease demon to the back of your mind while he's whispering "A flare is coming..."?

To be perfectly honest, I don't think it's totally possible. You always have to be prepared. Whether its a doctors appointment or tests or a hospital stay and time out of your schedule, you do have to have a plan.

But you can tell Disease Demon to shut up and quiet his voice by getting busy living. Keep busy. Work hard to balance self-care and fun. For me, baking and spending time with the family are things I do as much as possible to really keep that joy at the front of my mind. And I am completely honest with my doctor when anxiety begins to get the better of me. I take a mild anti-anxiety medication when needed to help keep that little voice quiet. There is nothing wrong with asking for help. We deal with a lot. Not just day to day life, like everyone, but dealing with day to day life while living with an illness that is slowly eating away at our bodies.

One thing that I find really helps as well, is to share the joy with others. Instead of only talking about your disease when it's active, share when you are having a good day. When someone genuinely is concerned and they ask you how you are doing, let them know , "Today, today is a great day!" Sometimes being positive about your own issues really boosts someone else who might be struggling with their own. Making someone else smile is some of the best anti-anxiety medication you can have.

Don't cower and wait for the "other shoe to drop". Make Disease Demon shut up and skulk away. Get out there and enjoy every precious moment of a good minute, hour, day, week, month, year.

If You're Happy and You Know it....

Well, as usual, it's been a long time since I have added anything to this blog. Lots of good intentions but, well, life happens.
Recently I have been thinking a lot about this thing called "happiness". Not too long ago there was a discussion in one of the Crohns groups I am in, about stress and its effects on Crohns, and one thing that came up was the shit that life throws at you. So I shared several things that have landed in my life over the years. And trust me, I could write a couple epic novels over some of this crap. One woman who kind of knows me through the group said, "Yeah, but you always seem so happy?!" As if somehow having Crohns and having curve balls thrown at me negates my right to be happy. That really pissed me off, then it hurt my feelings, then it pissed me off some more. Crohns does not preclude my right for happiness. Neither does divorce or house fires, or jobs lost, or any other of the multitude of craziness that seems to pop up.
So I reflected back on some conversations over the last several years, and it seems to be the running theme. It really surprises some people that I am happy once they know I deal with a chronic illness every day. They even distrust my genuineness.
For me, happiness is not tied to tangible things. I truly believe its a state of mind. I haven't always been a happy person. Some days I feel less happy and more grumpy. But the reality is, I have this one life. How I CHOOSE to be is how I WILL be. I choose to be happy. Even if it's just an outward expression in one moment like a smile or a kind deed, it's infectious. Don't feel like smiling? Do it anyway. Want to rail at the world and throw things. Okay, do that too. But then smile at some random person or hold the door or just say"Have a great day!". Because whether you believe it or not, most of the time if you make the effort, it effects those around you and suddenly you feel lighter. Like a small piece of the walls we all build around us, cracked just a bit, and let the warm light in and we can breathe.
Now, I am not talking about those who deal with clinical depression. That is a different matter. I mean, people like me, who live daily lives the best way they can.
Do I have bad days? Oh, Lord, yes. Have I had my heart broken? Absolutely. Are there moments I wish I had no problems to work through? Duh.
But that is not the reality. Life is hard, sometimes it throws shit right at the fan pointed in your direction. Even several handfuls at once. Some people think things like a perfect house, a perfect job, perfect children, perfect hair etc etc etc are what GIVES you happiness. But, things do not make you happy. People and attitude do. Happiness is a state of mind. I am happy when I hurt, because I am alive to feel pain. I am happy when I lose a friend because I know I have a plethora of people to support me and love me. I am happy when I am struggling to find a job. Because I know I have had good ones in the past and there will be one in my future. Every single moment in my life, good AND bad, continues to lead me in the direction I need to go. And I am happy.
Truthfully, I think sometimes people who struggle and who find genuine happiness, are the ones who appreciate it the most. I hold my happiness deep in my heart and protect and treasure it.  Because I fight for it. I fight for it every single moment of every single day. Each day when I wake up and I hurt so badly it takes a good hour before I can move comfortably, I am happy. Not because I have things. Although truthfully, a hot cup of coffee helps a lot. But because I woke up. In my home, next to my amazing husband, knowing my beautiful family is probably getting moving as well. I see pictures my grandson drew for me, and my heart does a little happy hop knowing that I am loved by the best little boy in the world. Who IS the best little boy in the world, because my own child is his mother.
Now, don't get me wrong, I like having things. Who doesn't? I just no longer connect my personal happiness with the things I own. I connect it with the things that make me feel alive. Like sharing a quarter with an old man who was short a few cents at the store, or chatting up the lady behind me at the pet store who bought the cutest little dog toy for her new puppy. She smiled, I smiled we told each other to have a great day. And it brought a small drop of happiness to both of us.
The truth of the matter is, we will never know what happiness really is if we wait for it to happen. We have to get it. We have to go out and grab it with both hands. And share it. Share with anyone you can. Because nobody really knows what is going on in someones life. One small drop of the light of happiness could mean everything for someone.
This might sound trite, or simplistic. But in my years of living with more crap that I have time or the inclination to type, the one constant is making myself see the positive in every situation I can. And working to be a happy person to others. I want to be remembered when I am long gone as someone who was happy and who made others happy.
So, to that person who seems to think that happiness is not achievable by people with a chronic illness. I am truly sorry that you feel that way. You're life must be so dark and cold. Lets talk and I promise, I will find a way to make you smile. And when you smile, I hope a small drop of happiness leaks into your heart and mind. Enough to take root and show you the meaning of really, really being happy.

Healthcare is like an onion

I was in a support group a while back and we were discussing natural healing vs medication and one thing someone said to me really resonated. She said "I layer my heath care." Of course if anyone has seen the film Shrek you'll know why my brain immediately thought "onions!"
I think the reason this hit me at that moment, is because an ongoing debate in several groups I belong to regarding treatment of I.B.D., is whether or not to go all natural and treat with diet, herbs, oils etc or to treat solely with medication. And there are extremely strong feelings both ways. Too many people are strongly entrenched in one way or the other. A lot of times one of the things that gets us fired up is when someone offers a "natural solution" for a "nominal cost". Our red flag tends to go up and our brain screams "SCAM!" But that shouldn't turn people totally away from exploring different treatment options. And, lets face it, none of us like the idea of ingesting or injecting some of the horrifyingly strong medications that we're prescribed. The reality is it's most often a balance of a little bit of everything.Thus the layers.
Like I have said before, we are responsible for our health care, what we do with this one body we have. Research and experimentation (with a doctors knowledge) are key.
For some people, a totally holistic approach works wonders for them. Herbs, careful and disciplined diet, essential oils, exercise, meditation, etc are all worth looking into. Obviously, if it touts a "cure" be very careful because there simply is NO cure. But it IS possible to attain a long term remission so don't completely turn away when you see that word "cure".
For others, medication and/or surgery might be the only thing that works for them. And that's OKAY. Every single body responds in its own unique way to its own unique treatments.
In almost 30 years of dealing with Crohns Disease, I have discovered that my particular treatment changes over time. I was able to have a medication free 11 year remission after a surgery and managing my diet. Along with that, regular exercise like yoga and walking played a big part. I also discovered my body loves ginger and peppermint and now oddly hates all things involving cooked tomatoes.
After coming out of remission I had to work with a doctor and add some serious medications and undergo another surgery. Now my hope is to get over the hump back into remission and once again be able to manage my disease medication free. If that doesn't happen, I will continue with the medications because my quality of life is just as important to me as good health.
Understand that there is still a ton of ongoing research regarding I.B.D. and what it stems from and how to treat it and eventually obtain a true cure. One good article I recently read spoke about new research into the gut/brain connection. And anyone with this disease knows without a doubt that our moods effect our gut and our gut has strong control of our moods.
So before dismissing anything holistic or all natural, do something simple, research. Make sure you find a reputable source like a large University study. You may be surprised. Layering your own care with the things that you respond well to is important. Try different diets, add what exercise you can even if its just a short walk daily, research supplements (your doctor can tell you which ones you need by a simple blood test), look into different food combinations, research herbs (*be careful with this one as herbs are sometimes as strong or stronger than prescription medications and can have adverse reactions with any medications you are currently on), essential oils are huge right now, peppermint is my favorite and it helps nausea better than Zofran for me. Even finding a hobby can seriously help depression and anxiety.
Its all about educating yourself and putting together a plan that works for YOU. Layer your health care, like the multiple layers of an onion and take control of your disease.

To Work or Not to Work....

What do you do about work and earning an income when you are dealing with a chronic illness? Do you tell your employer? If you tell your employer, what do you tell them? How much do they need to know? What happens if you get sick and have to be in the hospital or have tests? How do you protect yourself and at the same time not cheat your employer?

All these are questions I have asked myself and have discussed in several groups dedicated to support for Crohns Disease and Ulcerative Colitis. As someone who has worked and raised a family while coping with this, I have found that there are several things to consider and do.

First of all, only you know if you are physically able to work. For some of us a physically taxing job or one with a high level of stress may be difficult. For some, a job sitting for extended periods of time would be next to impossible. So much can depend on you, your skills and what is available to you. This is why it's critical to have a strong relationship with your doctors and a comprehensive understanding of every aspect of your disease, including being brutally honest with yourself and your own limitations.

As far as telling your employer. Yes. They will absolutely need to know. Its not something you should bring up in an initial interview but at a more in depth second interview or at the time of a job offer, you should be clear and concise in letting them know that you have an autoimmune disease, you work closely with your doctors while being treated, and there may be an occasion where you will have a doctors appointment as a follow up to continued care. Many times this opens a dialog and you can educate them if they aren't familiar with your disease or you can then ask questions regarding bathroom accessibility and whether they offer an option to work from home on days you may be alright to work but maybe not up to a long drive in.  I have had some really good discussions and have had nothing but positive results by being open and honest and heartfelt. If you are already working when you are diagnosed, this is something you would want to discuss with your manager and the HR department.

And that leads me to the questions about time off and missed time. Unfortunately there will be times where your disease decides to take over your life and that can mean sick days, doctors appointments, tests and hospital stays. By having information about your disease and any special needs you might have in your file ahead of time, the management and HR departments won't be blindsided and they can usually make arrangements for you when time off is needed. One thing I have found to be especially helpful is to schedule my doctors appointments as early in the morning as possible. Usually this allows me to only take a few hours vs an entire day. I try to also schedule any tests the same way so that if its a long procedure, I have the rest of the day to rest and recharge and can return the following day to work. It goes a long way with your employer to be as accommodating as you can be with the things you can control. If you have a sudden illness or hospitalization, its helpful to have the numbers for your manager or HR Department in a place where your partner or family member can find them to call in for you as soon as possible. The FMLA (Family Medical Leave Act) is something you can take advantage of if you have been working there over a year and have exhausted your vacation and sick leave. The HR Department has to approve partial or full use of this, but basically within one year you are able to take 12 weeks of UNPAID time with no threat of losing your job. Again, this is UNPAID leave and has some restrictions so use this wisely.

Its important to understand that most people with chronic illnesses want to work. They want to feel productive and for some they really have to work to take care of themselves and their families. For me personally, working is one of my coping mechanisms. When I am working, solving problems, interacting with coworkers and accomplishing all my goals and tasks for the day, I forget for a while I feel like crap. It's pretty much that simple. Right now, I am close to remission and doing well and ready to get back to work. But that doesn't mean I don't have days where I really really feel horrible. I just manage it well now.

Some people ask me if I would be better off just trying to go on Disability. Well, its true, I could apply for that. Crohns is technically considered an illness that applies for disability. And I know some who really needed to go that route. I, for one, don't want to unless its absolutely my last option. I guess in some ways I am stubborn that way. Like I said before, working is my therapy. It keeps my mind active and focused on something other that my failing body.

So basically, its very possible to work and be productive with a chronic illness. You may need to learn something new, or possibly train to do something you can do from home, or go to part time hours. But it IS possible. You just have to really know your body, your limitations and be open and honest with your employer.

I Am the Boss of my Body

So its been a few weeks since I have updated my blog simply because the Crohns is extremely active right now and I have just been to exhausted.
But I have been reading a lot of message boards and online discussions about this disease and living with it, and I have to say, I am appalled at some of the incredible things people believe about their disease simply because a doctor told them or simply brushed them off.
Here's my thinking. Its MY body. I live with it, I wash it, I feed it (if I CAN eat), I rest it (sort of). I am in this body 24/7/365 and I have to deal with the effects of not just a disease process, but side effects from medication and the fabulous onset of peri-menopause. So I think, and believe strongly, that I am the one responsible for my body. So when someone, yes, even a doctor, tells me something, I research it. I want to KNOW, in grand, in depth detail, what I put in my body, what is happening with my body and what I can do to help heal my body.
I am amazed in this day and age of information that anyone would ever simply blindly take as gospel anything a doctor says. Don't get me wrong, I adore my doctor. He is amazing. He's intelligent, and caring, and excellent in his field. But when he says, lets try this ABC medication. I just don't say "okay". I ask what the effects are, what the rate of success has been, what interactions it has with other medications. I go online to trusted sites and read the information there, and I talk to other people who have taken that medication and ask what their experiences are.
And this goes to the idea of taking charge. One thing that a lot of people with chronic illness experience is a sense of lack of control. Their body is going haywire and they have no control. So TAKE control. Learn everything you can about your disease and your treatment. Be proactive. Be the boss of your body.
If I feel uncomfortable taking a medication I tell my doctor No. "GASP!!" Yes. I actually can tell my doctor No. Its MY body.
For example. We tried a medication called Imuran. Its a chemotherapy drug that has had some success as a treatment for Autoimmune diseases particularly Crohns and Ulcerative Colitis. Now, I was hesitant because as soon as I heard the words "chemotherapy" my warning bells began screaming and I think I even saw red lights flashing in my brain. But he assured me that he's used it with success and it was worth a try. We attempted 3 different times with 3 different doses and every time I ended up with serious infections. One time I even had M.R.S.A. in my FACE. So this last time, I started developing new infections on my hands and so I called him and said I am not taking this any more. The world didn't stop, no one called me a nut job, no men came and took me away. My doctor simply said okay. He recognizes that I will be the one to make the final decision about my care.
There is no excuse for ignorance especially with the one life we have and with the incredible amount of information available. Own your body. Own your disease. Be the boss of your body and your care.