I thought about making my Chicken Soup today

Dear Mom,

It’s 60 degrees out right now, and I have opened all of the windows. This is the type of day you’d spend airing out the house and putting fresh sheets on the bed.

I know you loved this kind of weather. I remember the clothes line that stretched across the yard when we lived in the apartment so long ago. I’d catch glimpses of you, pulling clothespins from your pockets, between the sheets billowing in the breezes that sometimes faintly smelled of the sea air. We lived only about 1.5 miles from Long Island Sound, after all.

Days like this also make me want to make chicken soup. Although you called mine “chicken stew”, and with a twinge of pride and funnily feigned insult, you’d say that mine surpassed yours and that you’d never make yours again.

This morning, I absent-mindedly surveyed my pantry, making sure I had all of the ingredients to make my soup (I don’t!!), and started calculating how much to make, becausek I was going to call to see if you wanted to come over and partake.

It was thanks to all of those hours spent in the kitchen with you that I love to cook. At first, time spent was by default, because whenever I was sick, you wanted me in your eyeline no matter you were doing.

I admit that at times, it was agonizingly hard as a kid to sit there and not ask too many questions and not to disturb your kitchen flow.

So I quickly learned ways to combat boredom, the biggest of which was to ask if I could help. I learned how to taste something and figure out what was missing. Was the sauce thick enough? The gravy lump-free? The potatoes peeled the right way?

Yes, there was your way, and the wrong way.

Even as recently as a few months ago, when none of us were able to match the speed and accuracy of your potato peeling, you ended up redoing it yourself (while we all giggled at our less-than-stellar potato peeling skills).

One other thing I never mastered, thanks to you, was the ability to cook a meal for less than 10 people. I guess it’s not in our DNA as my sisters have this problem, too.

So as I enjoy the cooler weather, and obsess about the hurricane that is just barely missing us, I smile although it’s been only 3 weeks since you left us.

We will continue the tradition of loving others through feeding them. And when I do make chicken soup next, I will “have some for you”.

Before Death Do Us Part: Swedish Death Cleaning

It’s about time we opened the closet doors, looked under the beds, and pulled up the blinds.

A friend of mine had lost both her parents and was sharing with me the tedious and exhaustive process of cleaning out her parents’ home. I could feel the exasperation through the phone. It was a drawn-out physical feat, and one that took an emotional toll as well.

The Realization

It made me think, “who will do that for me/us when we’re gone?”.

We do not have children. There is no one to rummage through the things we left behind, to settle accounts, to determine who is going to take ownership of any “treasures” collected over our lifetimes.

The Solution

I came across a process called “Swedish Death Cleaning“, during which you essentially clean out and declutter your home as if you were preparing for your own death.

It made me very sad at first, because I didn’t want anyone in my family burdened with the monumental task of going through everything.

Though the title is a bit morbid, leave it to the Swedish to be so matter of fact and clear-cut in the way they do things. It’s like the Ikea method of sorting through your life so others do not have to do so.

Many book options

We had a slow start. We would try working on one room at a time, or going through one small part of the house and tried to focus on that. In between my husband working a lot and my wavering levels of energy due to my health, we seemed to never find our footing for a while.

I tried motivated myself with notes. We made lists over and over. We attempted all sorts of ways to really get going.

But this was more than Marie Kono’s embracing what brings you joy. Most stuff we own aren’t for reasons of joy, but for utilitarian reasons, or sometimes, because we thought we needed something. And when sales came along, we thought, “can’t beat that!”.

But just because it is a deal, doesn’t mean you need it.

Like many people, we had accumulated more than we ever would need or use. we weren’t hoarders, but by no means did we live minimalistically.

After many starts and stops, we finally starting making progress a few months ago. Again, life gets in the way and we have to make the time to really work on finishing something before moving to the next. but we are getting there.

Making Progress

I don’t have any earth-shattering tips on how to achieve our goals. Maybe once we are closer to to it, I can look back and let you know what worked. But like anything worthy of your effort, you need to commit. Each time you take a step, do it with your full attention and avoid disruptions. Ignore the impulse to become distracted.

Start with something achievable. A drawer. A counter. Or begin with a type of item, such coffee mugs. That was actually the first thing we did, was go through our coffee mugs. It took 3 sweeps before we were satisfied. And I am sure we can do more, but we made strides.

How many mugs do you really need?

We figured what works best for us is deciding what we are going through, set aside a block of time, and just going until we’ve reached a pre-determined point.

And then we remove the items from the house.

We’ve offered some things to our nieces and nephews (all are in college or starting out), given to friends who we knew could use X or Y, donated to the Salvation Army (and other similar stores), and also take great use of our town’s facebook “giving” group. Things that just look junky went into the garbage.

Now We’re Getting Somewhere

Once we began making a little bit of headway, I’d look at the cleaned counter or inside an organized cupboard and feel relief instead of stress.

Clutter is chaos. Chaos is stress.

We are still building momentum. You don’t realize how cluttered a room or closet can really be until you start to dig. And it may take some time before you can see progress. Sometimes you have to take it in layers. And then you create “staging areas” of what’s going, what’s staying, etc., until you get rid of, or find the home for, each item.

If you have tried Swedish Death Cleaning, I’d love to hear about your experiences. We don’t have an ultimate goal date, because things don’t always go exactly as planned. But we do have the vision and are practicing decluttering every weekend. We get better and better with time. I don’t know if one would ever feel truly “finished”.

But I do know that with every piece that leaves this house, we get to feel a little more peace.

Welcome Back to the Pink Perspective!

I’m back! I’ve updated TheraPink to reflect the changes I’ve gone through in the past couple of years.

For quite a while, I didn’t have any extra headspace to formulate sentences and paragraphs and cohesive content.

I’ve had a lot of time to think, however. Many nights in the hospital, sleepless yet exhausted, determined but drained, searching for motivation and the strength to do the things I needed to do.

I realized that life falls into three categories: Survive, Live, and Thrive.

It’s been years and years since I felt I was thriving. Our last real vacation was 12 years ago. I was still attending weddings and kids’ games and every holiday. I wasn’t the best housekeeper, but things were okay. Stable messy, is what I’d call it.

Then my body started going downhill. The emergence of Pancreatitis – now Chronic Pancreatitis – was causing a lot of pain, nausea, and some weight loss. I somewhere contracted MRSA  in my lungs and sinuses, that seemed to blow up after my second sinus surgery. We started to miss important friend and family events. Commitments became very hard to hold onto, because it seemed that every date we’d saved and event we planned to attend was ruined because I’d become sick and actually end up in the hospital. Instead of celebrating weddings, holidays, trips, and concerts, I’d wrestle with myself and torment my soul trying to make the right decision.

It seemed that when I did push too far, when I was sick but “sucked it up” and attended, I’d always pay the price. Getting sicker more quickly. Ending up in the hospital only days later. I had distress that I made the wrong decision. The enormity of how poorly I felt physically often overshadowed the experience itself.

I was still living. I still cooked, cleaned haphazardly, and kept trying to be “normal”. But I needed more and more help from Ken. I was on more medications. I was sick every 4-6 weeks, and my gut issues (Pancreas, especially), became more persistent.

Then came survival. When you are forced to think or exist minute by minute. at first it is the only way to cope. Can’t do a day? Try an hour. Can’t do an hour? Try one minute. You can do anything for one minute. This became my mantra, my way of existing.

I was so far from thriving, and certainly didn’t even feel like I was living. I went to some scary places, physically and emotionally.

Ken and I became obsessed with finding our way up. We had to seriously advocate for me with my doctors and the hospital. It is easy to fall in the cracks these days, with so many people needing care and health resources at their limits. But we made the choice not to roll over. I was NOT going to give up.

So here we are right now. Trying to get back to the world of the living.

Surviving is not enough. Not for our souls.

So begins a new phase of our lives. Thankful for the opportunity and time we have been given, we owe it to ourselves and to God. We are taking back control. What the rest of our journey looks like, I have no idea. Where we’re going?  No clue. But we’re ready to do more than just survive.

Mid summer update

So it’s been quite a while and I really hate saying that on a blog because it’s obvious when the last time I posted was…

Since my hospitalization, I have been trying to build back my strength and energy after three weeks fighting sevral strains of pneumonia, MRSA, and sepsis. Not only did I lose a lot of weight but I also lost muscle, so I was exceptionally weak.

I have also been battling some major stomach and a sinus disease, so it really hasn’t been a fun time, so to speak.

That’s one of the hardest parts about having CF, is the fact that it can affect so many different parts of your body, especially as you age. Decades of taking life-saving medications can cause problems that were never considered because there was very little chance of patients living into adulthood long enough to have these problems.

I did get to have a fun day visiting with my family when I attended a graduation party for my niece and my nephew. I also got to spend Easter and Mother’s Day with my family, where as in recent years I had not been able to do so.

MY sisters and I on Easter

I’m hoping to be able to do a few other things this summer and at least make a few more memories to hold onto. We all know what is likely around the corner for me so all I can do is stay positive and live in each moment. Because that is all we’re guaranteed is this very moment. Hope to be back soon. Have a great rest of your season!

Ten-Week Update

Over the past two months, I have been recovering from a 3-week stay in the hospital for lung infections due to some pretty serious bugs which are tough to treat. I also ended up with a blood infection, and my kidneys suffered some damage from the strong antibiotics I had to take via IV.

When I first came home – for the first time on home oxygen – I was not prepared for how difficult the recovery journey would take.

The ride home from hospital

I had lost significant muscle tone and overall physical strength. I had sapped most of my reserves of hope that I would ever be “well enough” again. I was also on 2L oxygen 24/7.
It was through sheer stubborness, plenty of crying sessions, dozens of prayers for healing and courage, that mentally, I could get through this experience.

Physically – well – we are not quite there yet. The good news is that I only need Oxygen for extreme exertion (such as going grocery shopping, driving, etc.), I don’t need my husband’s help to shower, and I can now cook a few days a week.

I just began driving about 2 weeks ago – my upper body strength wasn’t much to begin with, but one morning, I decided that I was going to run errands by myself. Good thing I brought along the portable O2 concentrator because I ended up having to sit on the floor at the store to rest. But I made it to the pharmacy as well, and carried in and put away all my purchases. It took 2 days to recover, but it began getting the ball rolling.

I actually felt well enough to celebrate Easter and Mother’s day – holidays that fall into one of the times of year that I am sickest.

Mother’s Day with one of my Godsons

The best medicine – one of my cats!

Ken and I at Easter…a rare sunshiny day! My rock!

Unfortunately, I have had to miss some other important family events due to my chronic issues and how strong/not strong enough I felt on those days, which were very difficult. And my CF is trying to take me down again with some very unpleasant belly problems. But my doctor is on top of it and trying to keep me out of the hospital

As spring turns into summer, I hope to enjoy life more, and maybe even have some energy left to enjoy friends!!!! Wouldn’t that be wonderful???

I have to say, if it weren’t for Facebook, I would not have the support and encouragement that I have. Even though I don’t much get to see friends, those who really care have made themselves known. Prayers, memes to make me laugh, cards, care packages, letters – the love behind it all empowers me to keep pushing, to keep fighting.
There are so many people I want to thank, and cannot possibly type that long right now, but you know who you are.

Remember that the smallest victories can make the biggest impacts!