The Invisible Struggle Bus

I wanted to share something I went through yesterday. It is sadly becoming a common occurrence for me.

I was trying to bag my groceries at Winco and the cashier was giving me snotty ass looks because it took me forever. There are reasons for this.

A- Fingertips are usually numb. Makes opening their cheap ass bags near impossible.
B- my shoulders were not co-operative and decided grocery day was a good day to say "f**k you, squirrely chick!" And
C- I have chest pains almost everyday.  So lifting things, like grocery bags, is very painful.

On the outside I look cute as hell in my Lilo and Stitch dress with coordinated cardigan. On the inside I was praying for the sweet release of death so I wouldn't have to be embarrassed because I had to use herculean effort to do what should be an easy task. I have a disease that not only is "invisible" most people don't even know what it is. 

Does this girl look like she's hurting to you?

 I know, I shouldn't care what others think. I have enough to deal with already, but humans are social animals, we can't always help being affected by the judgements of others. Also I was angry at myself for letting it get to me. A lot of people couldn't deal with the hand I've been dealt, I keep playing the game none the less. I'm stronger than the judgmental glances and comments of others, aren't I?

Now, there are ways I can avoid situations like this. For example, in the future I will no longer attempt large shopping trips alone. My husband begged me not to go yesterday, while he was at work and the kids weren't home. I didn't listen. That's a whole other discussion, more on my Wonder Woman complex later. Ultimately though, I shouldn't have to deal with the judgement.

Anyways, this is all one convoluted way of saying, "Treat people with kindness, patience and empathy." You don't know what their demons are. And it really sucks to be on the receiving end of that judgement.

Back to school?

As some of you may or may not know, I have been going to school since forever to finish my degree and get my registered nursing license. I have thus far only been able to attend part time, while I worked full-time. I am proud of the progress I have made and I am fairly close to finishing. I registered for classes as usual last April. 

Then things got really crappy for me health wise. I knew I had an auto-immune disorder. What I didn't know was which one and how much harder things were going to get for me physically.

Now I am facing some pretty serious choices, with no time to really think about them. 

I'm not sure how many people are aware of or appreciate how demanding, physically and mentally, being a nurse is. Twelve hour shifts are typical and there is a dirty little phrase in the field called "mandatory overtime". When you sign your paperwork for pretty much any nursing gig, there's a little page in there somewhere that says that you HAVE to work overtime if the need arises. If you refuse, you could lose your license and potentially face criminal charges for patient abandonment. Add in the fact that nurses work really hard caring for people who can be rude, abusive, violent or just plain uncooperative, and then you have your cases that just break your heart.

Okay okay, I knew all of this when I started down this path. I was perfectly aware and prepared for this. I was prepared before Scleroderma. 

Now I am looking at being so close to finishing a degree that I very well may not be able to use. Where I am now physically, there is no way in hell I could work a 12hr shift on a hospital floor. 

At the same time, I am so far from any other degree and I am not interested in anything else. 

So, what do I do? I have come way too far to not graduate. I will be a college graduate. But do I really get a degree for something I may not be able to keep up with? Do I switch horses now and have to back track to get a different degree?  Either way my college loans are not going to be easy to pay with a check from disability if I can't work at all. 

For now, I am going to stay the course and keep working towards my original goal. I am worried, I am unsure, but I don't know what else to do. Hopefully I'll figure it out soon. Or maybe I'll win the lottery. That would work too.

Ch-ch-ch-changes and other unsettling entities

So, things are changing for me. Now, I know you're thinking, "Change is good!" But to you I say Pfffffffft! I have always feared and hated change. I'm the type that digs in their heels and resists as long as possible. Even good changes cause me serious anxiety. I could write an whole series of blogs about my insecurities, but I digress.
This is about my current batch of crazy. Since I've been diagnosed, I lost my job. This opened a whole can of worms for me. Not to go too far off topic, but in a long past life, I had no control of the money I earned. It was direct deposited into an account that I had no access to, because I let my abusive ex get away with treating me that way. I changed my life drastically and built a better one, but old scars run deep.

I am finding it so hard to let myself trust that my husband will take care of me. I feel like a burden.  What do I do if I am left high and dry with no way to support myself? I've been going to school and am very close to completing a degree that is in a field I probably won't have the physical ability to work in. Where do I go from here? How do I get over feeling like this and accept that I am worth caring for? Am I worth caring for? AAARRRRGGGGG!

Aside from all that, being diagnosed with a rare disease brings out all your crazy relatives, friends and others who can't wait to share with you the latest news, diet, fast, cleanse, or miracle supplement that can cure you.  Every one knows of someone who knows someone who cured their Scleroderma with sone magic juice or vitamin blend. I know that these people mean well. But the cold harsh truth is this. There is no cure for Scleroderma.  It wont just "go away". You can't pray, fast, juice, cleanse or diet it away. There are treatments that can lessen the severity of symptoms and possibly slow the progression of the damage. Goodness knows I'm on so many pills that my bathroom looks like a pharmacy. But this is the rest of my life. I pay an entire squad of educated medical professionals to help me manage this. I don't need old wives tales and magic charms. It's not that I don't appreciate that they want to help, but if you really want to help I have an ever growing list of chores I haven't been able to manage. I could use a dinner I didn't have to struggle to cook. Or even a massage or a hug would help.

So those are current crazy thoughts and gripes. If you read this, thank you for letting me vent. You are awesome.

Squirrel-a-derma and other Strange Twists.

Have you ever been too optimistic for your own good?

This is where I find myself at the moment. In the aftermath of just such a case of rampant optimism.

The week started with a bang. I had suffered 6 days in a row of chest pains. Sadly, this is not uncommon for me. No one has figured out why they happen.

I finally found myself desperate for relief and called my primary care doctor. Then I called my rheumatologist and begged for a sooner appointment.

I had been waiting to see her for almost a year. Cancelled appointments on my side due to life suckage. Cancelled appointments on their side compounded by a waiting 4 month waiting list every time we had to reschedule. This time they happened to have a cancelation 2 days from then. Finally.

Saw my regular doctor and I asked him to level with me. We had been throwing around the word Lupus. My Nanna has Lupus. But my antibodies have never come up positive for Lupus. I told him that I needed to know what I was really up against. Over the past year my health has gotten worse and worse. He said he was hesitant to diagnose me, the specialist might see something he missed. I insisted.  He said the word I didn't want or expect: Scleroderma. Then he said, "But wait til you see the rheumatologist. I still am hoping for Lupus" Hoping for Lupus. Such a strange phrase. But between the two,  I guess I was too. I'm familiar with it. Scleroderma, that was terrifying.

The next day my husband and I sat in the specialists exam room. She came through the door, very quickly introduced herself and almost in the same breath said, "You have a condition called Scleroderma." As easily as she was saying that the sky was blue. BOOM. She very quickly set up some orders in her computer for my medicines, pinched me everywhere on my skin to check for tightness. Then she added another med for my purple toes, Reynauds Syndrome. She told me what the plan was, to go get a bunch more tests, and she was gone. Maybe a half hour had passed at most. We sat stunned while the nurse printed out info and orders for tests, and sent us on our way.

Since then it's been an even wilder ride. My boss forced me to resign. It was either that or they fire me and I can't ever reapply. I've had to explain to my kids, my parents, my siblings, close friends, what I have, what it can do, and that I don't know how fast it will happen to me. Then I have answered calls later on after some of them went and Googled it even though I told them not to.

My kids seem to be coping. My daughter can't pronounce Scleroderma, so she keeps saying I have Squirrel-a-derma.  ;) I'm so glad my kids have my sense of humor. We've decided I'm going to become a super villian that commands an army of squirrels. Got to make up for my job somehow right?

So how does this rambling narrative relate to optimism? From the very first positive ANA, the pattern said it was either Lupus or Scleroderma. I optimistically thought it HAD to be Lupus. It was familiar, sucky but familiar. My doctor did the same. I never prepared for anything else. I was blindsided.

Despite that. I'm still optimistic. With everything going on, I have to be. I'm more cautious with my optimism, but it still survives.

Early Morning Thought Spiral

I woke up early this morning in pain. It's been that way more often than not lately.

As I lay there, I did my usual morning gauntlet of social media stuff. Until I noticed a text from my brother-in-law. We had been discussing the night before a dream I had, in which we were supposed to be married. I ran away to New York because I didn't want to get married to him (nothing personal) but it was okay because he wanted to be a space emissary. Like I said, it was a weird dream.

He had continued the conversation this morning by stating that he would never do anything like that. He wouldn't give up the certainty of having someone in his life for the unknown. What follows is the rest of the conversation, shared because it took a weird turn down the dark roads of my mind. The kind of thoughts I have when there is no one awake to distract me from them.

Me: True. You like certainty.
M: It's much better then a handful of nothing
Me: Indeed

This is kinda where it took the turn.....

Me: There is something to be said for spontaneity though.

Certainty is kind of an illusion. The only real constant in the universe is change.

I was certain I was going to work as a CNA til I got my nursing degree done. Now here I am. On medical leave til October, and I don't know what happens after that.

I have to look at it as an adventure though. I didn't choose to have Lupus or Scleroderma or what ever the hell they are gonna eventually diagnose me with. It just came into my life and shook up the certainty.

The only thing certain is that there is no cure for either of them and it has, and will continue to change my life, for better or worse. The adventure is trying to make the best out of the life I have now, and finding the people who are really down to ride out the road with me, bumps and all.

And finding the bravery to believe I am worth riding with. I live in constant fear that the burden of me and this illness is too great and eventually everyone will just get tired of me and leave.

Heavy stuff at 8am.

But this is where I live these days. Right or wrong, these are the thoughts I have. As I understand it, this isn't uncommon for someone with a chronic or even long term condition. The fear of being a "burden". The thought that the people in your life won't tolerate you forever.

Perhaps it's my low self esteem. I have always struggled with feelings of inadequacy. There are other experiences I've had in the past that also add to the doubt I feel.

Why do I allow myself to let these voices win? I have other voices in my life that counter act the doubt. I'm a smart person. I've always been capable. I'm raising 3 pretty amazing kids that I'm confident love me. I have a husband who has repeatedly told me my fears of abandonment are ill founded as far as he's concerned. He isn't going anywhere, he says. I have supportive and loving parents and extended family. And, not that it matters too much but I'm not too hard on the eyes. The positive voices in my life far outnumber my own negative ones. Yet, I find myself many mornings and late nights too, listening to the lesser voices in my life. The fear. the doubt.

Perhaps it's human nature. We place a lot of stock in what a person has accomplished or what they own. Their means determine their worth. It could also be that I work in a field where all I do is care for other peoples "burdens". I don't see them that way at all. But in some cases their families did, so they sent them away. Sometimes they themselves think they are a burden and apologize every time they need care. I see vibrant individuals with soul and so much love and wisdom to impart, they look in the mirror and see helplessness. Before, I could never understand when a person who needed my help would apologize for "bothering" me. I was there to help.

Now I find myself apologizing.
"I'm sorry I'm not energetic today."
"I'm sorry but I need to go back bed, I'm wiped"
"I'm sorry, dinner is nothing special tonight"
"I'm sorry that I can't come to your party...."

I guess if there is any point to this other than being a catharsis for me, it's that we need to be kinder to ourselves and others in times of need. Life can change in an instant. After all, change is the only constant in the universe. A little more kindness all around, might make us more equipped to roll with those changes and face the adventure.