Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

You look so healthy!!!

Plans for 2019

I tend to keep a journal off and on. It's not a traditional "Dear Diary' type. More of doodles, lists, feelings, thoughts and plans. I like to go back and re-read them at times to see how much I've grown. This entry from 2017 really stood out to me and I found it share worthy.

I was still in graduate school at the time. This is a good snapshot of what chronic illness feels like. I wouldn't wish it on my worst enemy.

Here are the "goals" that I have been setting for myself through the years. I notice I didn't do it last year. I think that's because I had just graduated and felt I had enough to focus on with my job hunt.

More here about "Beginners Mind" if you're curious. 

"UPR" is a psychological term that means Unconditional Positive Regard.

On January 2018 I deleted my Facebook account. 

It took about an hour and a lot of Googling to figure out how to do it. Facebook is like that crazy ex who doesn't want you to go, peering through your window, hoping you'll change your mind. I can say with all honesty it was the best thing I could have done for my mental health. I was very much addicted to it (though less than most people I know.) I encourage everyone to engage in as little social networking as possible and spend that time deeply engaging with people in the real world.

Help While I Wait

The other day I received this text message that made me feel hopeful and excited. It meant that my spinal tap was approved and ready to be scheduled.

If there's anything I hate more than being sick, it's waiting and the unknown.

I called first thing this morning to schedule and was told that the message was sent by "mistake" and that I haven't been approved yet. In fact my insurance was saying that "The referral didn't meet criteria and the neurologist is having to re-submit." In English that means I could be in for a long wait. 

Aside from hating to wait and wanting to know 100% what's going on, I was hoping to get this all done before I start work again on the 23rd. That's less than 3 weeks. Now I have a feeling that's just not going to happen. Which means I'll likely have to deal with starting a new job while recovering from a spinal tap. Great.

Hopelessness and frustration visited me for a little bit this morning. But then like a Harry Potter patronous chasing away a dementor, I had a really helpful thought. Bob Marley's song "3 Little Birds" just literally started playing in my head. It was instantly soothing and helpful. 

Three Little Birds

Bob Marley

Don't worry about a thing
'Cause every little thing gonna be alright
Singing' don't worry about a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Saying', (this is my message to you)

Singing' don't worry 'bout a thing
'Cause every little thing gonna be alright
Singing' don't worry (don't worry) 'bout a thing
'Cause every little thing gonna be alright

Rise up this mornin'
Smiled with the risin' sun
Three little birds
Pitch by my doorstep
Singin' sweet songs
Of melodies pure and true
Sayin', this is my message to you

Singin' don't worry about a thing, worry about a thing, oh
Every little thing gonna be alright, don't worry
Singin'…

I also remembered some of my favorite RA bloggers and the excellent advice they had shared. Here's some of my top finds:

• RA Guy - Through the Looking Glass
• Ilana Jacqueline - 5 Ways You're Not "Living" With Chronic Illness
• Arthritic Chick - My New Wheelchair (the blog post I was never going to write.)
• The Mighty - 20 Gentle Date Ideas for People With Chronic Illness

These are very diverse articles in theme, but each one touched me in an incredibly helpful way. Each is encouraging and supports some central themes:

1. Your life doesn't stop because you're chronically ill. 
2. Work around what you can't do and do more of what you can.
3. Romance and love are powerful and healing. Don't stop that because of your sickness. (see number 2 instead.)
4. Don't live your life waiting. Waiting for results, appointments or other people's opinions.
5. Don't stop doing what you love just because it's harder now.
6. What you're going through is very hard. Find tools that make it easier (see number 2.)
7. Don't let other's opinions (including your doctors) define what you can and can't do. Listen to your wise body.
8. You have nothing to prove to anyone. Do what's right for you.

All of these are reminders that I still need on a fairly regular basis. I'm still very much adjusting to what comes easy for me and what is now harder. I have "gloomy days" to be sure. But I notice they don't stick around for as long as before. I also can see how this experience is encouraging me to grow in areas that are hard for me. Patience, trust, self empathy and mindfulness. 

The Last Time...

I've been having the feeling lately that there are many things I'm doing "for the last time." I'm torn between being at peace for this because of the pain and discomfort they cause and mourning the loss. Let me be more specific.

Last week I used a branch saw to trim back the neighbor's rosemary plant that was trying to eat our garden. It's something I've done many times before and never thought much of it. The saw is very sharp and it doesn't require much effort. But after 10 minutes I could barely open my hand back up. Yes, I had taken Ibuprofen before this. I told myself it was the last time I would even use that saw (or one like it.)

Sweet girl and her healing lovies.

Yesterday I went to the ZUMBA class at my gym. It's something I used to super enjoy and I've been trying to go slow and still do the moves. Well, both last week and this week the effort left me sore, stiff and with serious lower back pain even 24 hours later (and totally exhausted.) I think even with modification the moves are just too much for me (at least for right now.) I'm going to stick with Tai Chi or the pool.

Although neither of these activities are something I can't live without, they have one thing in common. They both felt very much like "LASTS." As in "that's the last time I'm doing ZUMBA." And that sucks.

I'm telling myself that this could be temporary and that my new rheumatologist could come across with some wonder drug that will wipe out RA (and not re-activate my TB.) But I also am aware that the opposite might be true. That this could just be a new way of being for me.

I am determined to embrace the CAN'S and move on away from the "cant's." But I also can't stop myself from wondering how many more "lasts" are in my future?

Growing Patience

As I said before, I used to garden a lot. I have a big garden where my front yard used to be and in the past have enjoyed growing lots of food for my family to enjoy year-round. I could spend about 2 hours in the garden working before getting pretty tired. That was about my limit. Right now my limit is about 15 minutes. That's a huge change. And to avoid the sun I'm typically out there at twilight.

Despite my husbands best efforts to keep the weeds under control it has quickly gone from "charming wild garden" to "out of control wilderness." Although I do get frustrated that I can't be out there as much as I want (even 2 hours was a lot less than I wanted.) It's also forcing me to prioritize and have patience.

One big change I'm doing this year is I'm not hand watering anymore. Believe it or not I used to get out there every other day with my hose and hand water every plant. Yeah... that's not going to happen right now. I also don't have the spoons or money to put in a drip system. So I went old school. Enter the sprinkler!

Even now when I see a sprinkler going I want to jump through it like a 7 year old again. There's just something summery and joyful about rays of water shooting up at high as your roof and raining down upon eager plants.

My fella installed it for me last night while I got my 15 minute "high priority" gardening done. That was the first time in a long while that being in the garden didn't make me want to cry because of what I "couldn't do." Instead I felt glad that I finally got to tackle the few things that I could do. And that hopefully what's already there won't die from a lack of watering.

Don't you just want to run through that?

Watching the water do its magic on my thirsty plants from my chair I realized that along with the sunflowers, my patience is also growing. I'm sure I'll still have plenty of moments of frustration, but hopefully they will come less often.

Embracing Change (or not)

Over the last eight years or so I was bit by the gardening bug. It started off with just a few tomato plants crammed into a little spot I cut out in our front yard lawn and grew to a huge garden where our front yard lawn used to be. Gardening brings me a lot of pleasure. It connects me to nature and makes me a better person. How? By reminding me that everything has its own time and patience is vital to survival.

During the last 3 years gardening has become harder and harder for me. I'd love to be the lady you see in the arthritis commercials who pops a few Aspirin and runs out to pull weeds for hours. But my body just won't cooperate. My stamina is crud, my hand strength is minimal and now with the Plaquenil I can't be in the sun. Dang!

My garden in 2014

This is how my garden used to look. Ordered, planned, structured with just a HINT of wild. And this is how it looks 4 years later...

My garden today - April 26th, 2018

This is mostly lettuce that we've been enjoying.

It bolted very fast!

I've cried a lot about my garden. I know that sounds lame, but it's very frustrating for me not to be able to do all the things in it that I have in my head (or that I used to do. ) When I was being treated for Latent TB I'd try and garden like I used to and I'd end up vomiting every time. I'd push myself way too hard. Even though that doesn't happen anymore, tears aren't much better.

Apparently I still have a lot to learn about "patience" from my garden. Now she's turning into a wild space. I was looking out the window this morning thinking how beautiful it is. It's not "structured" like it used to be and I'm still frustrated that I can't do all the things I want to do with it, but it's beautiful and full of life.

That's a bit how I feel about myself right now. I can't do all the things I want to do, or how I used to do them. I'm learning a new kind of living and a new kind of beauty in life. It's not easy. Not at all. And I'm sure I'll still have moments of crying. But I see that it's also important for me to sit back, drink my coffee and notice the good changes too. Just like my wild garden.

Any Questions?

"Do you have any questions?"
YES! 

What's wrong with me and how can we fix it?