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.