Masks and other Deceptions

The vast majority of my life, I've been accustomed to wearing masks. Not literal masks, obviously, but figurative ones. We all do it. There's the mask we wear when we are at work. The one we have for dating. Masks for social interaction, the holidays, family gatherings, ect. Fitting in with polite civilized company requires effort. Most of us have parts of our real selves that we reign in and cover up as the need arises.

There are those who don't. You know the ones talk obsessively about their collection of mint in the box action figures from the 80s. The one who can go on at length about their cat, Mr. Fluffykins, who is obviously the reincarnation of Albert Einstein because he is so funny and smart. Those passionate, wonderful souls that we consider socially inept. The dweebs, the super geeks, the alpha nerds. I admire them. They are unashamed of their obsessions. They want to share their love of whatever it is that revs them up with anyone who'll listen, regardless of the ostracization that usually comes with.

I envy them. 

I have my masks. My Mommy mask. That tries to be happy and silly for my kids even if I don't feel that way. My social mask, which is worn when I am around people who ask you how you are doing, but don't really care what the answer is. It even has a catchphrase. "I'm great! How are you?" *smile and nod* The mask I wear for my Parents. The responsible adult who is doing just fine so they don't have to worry. 

The problem is, my disguises are wearing thin. I have so much darkness, fear and sadness welling up inside that it's seeping out. Like one of those scary halloween masks that drip fake blood when you squeeze the little plunger. 

Some people in my life have always been able to see through. But what happens when the rest see what a mess I really am? Because, I am a complete disaster behind my mask. I'm not calm. I'm not collected. I'm not happy. I'm scared. Tired to the point of collapse. In more physical pain than I let anyone see. The wolves are at the door and the debt piles up, because I can't work anymore. 

Who is really going to be around me when the mask won't hold up anymore. Because I don't even want to be around me. And certainly wouldn't blame anyone else for not wanting to be there anymore either.

Brand new Dreams?

The dream is this:

Good stable job, house, reliable car, 2.5 kids, dog, yard and neighbors you wave to, but never really speak to. It's what were all sold. It's what I've been working towards. I went back to school, knowing that if I could just get through, I'd reach that.

Now we come to where I really am. Living in an apartment that most of the time I afford by the skin of my teeth or by the mercy of a family member. No yard. A car that I am usually surprised is still in it's parking spot and not repossessed. I have my kids. But I can't give them nearly what they deserve. I have my adorable dog, and the poor little guy spends many a day laying in bed next to me because I can barely move.

Now, before you think this a "poor me" pity party. That is not what this is. I made many of the choices that led me here. I dropped out of college at 18. My credit is a mess because of decisions I made when I was going through my divorce. I am not looking for pity.
This is a post about what a person is supposed to do when the rug gets pulled out from under them.
Because after many mistakes, I made a good choice and went back to school to finish my nursing degree. I've been trying to slowly but surely build my credit back up so that eventually I could own a home. We even discussed and planned for one more little one.

Then life happened. Scleroderma happened. The woman who could work full time, get straight A's in school and keep her home more or less running smoothly, became the one who has been treated to 2 ambulance rides in one year. Days where I couldn't be stopped became days that I couldn't get out of bed.

These things we've discussed before. That hasn't changed in a year. We are still trying to find the right medicines to make this more manageable. What also hasn't changed is the dream.
I still want that home, that yard, even that little baby. But I have to change those dreams. I don't know what tomorrow holds. I do know I have no savings for a home down payment. I know that the medications that are meant to slow the progression of my illness cause serious birth defects if used during pregnancy.

Normally, I'm a person who is content to roll where the universe sends me. I know worry doesn't change a damn thing. But lately I find myself feeling robbed. I have been doing what I am supposed to. Working hard, getting an education, paying my bills keeping my karmic balance in the positive at all times. ;)

I liked my dreams. I want my pay off. I don't know what else to dream.

Maybe my focus was too narrow. Maybe I'm not being as flexible as I should. But I am not sure how to work past this roadblock.

How am I supposed to move forward?

Religion, Politics and The Great Pumpkin

WARNING! I've been up for a few hours crying, this may not be an enjoyable read and you are, as always, welcome to skip it if this is not your thing.

Kids. Did I tell you guys I have 3 kids? They aren't little anymore, which is both wonderful and painful at the same time. I miss their chubby little faces and the snuggles, and the times when the whole universe could be set right by a kiss and hug. It hurts that those times are behind me. But it is amazing to see the people they are becoming. Mostly.

Anyone who has kids can attest, as much as we'd like to mold them like beautiful clay, they come with personalities. Sometimes those personalities are very different from our own.

In my case, it isn't a bunch of bad friends, or drugs that are causing rifts. It's the influence of their father. I chose someone so radically different from me when I got married at the wise old age of 18. I'm a hippie born a couple of generations late, he's slightly left of Hitler in his social leanings.

I got myself out of there and have tried to be an example of what I would like my children to be in this world. He has influenced them too. "Where are you heading with this Kitty?" I'm getting there, don't worry!

Since my diagnosis, I have been making some changes to myself. Things I've always wanted to do. Things I didn't do, by and large because I've always been afraid to rock the boat. Well, when a Dr. walks in to a room and informs you that you may not make it to the picnic you planned at the end of the ride, you become a lot less scared of trying the waters.

Apparently, in the eyes of my children this makes me a Godless heathen. My daughter has been convinced that if she shows any skin above her ankles it's going to cause a bunch a men to be tempted to rape her. An idea that makes me see red, but that's what her dear old daddy has taught her. So me with my pink and purple hair, piercings and tattoos, I'm practically riding a rocket to hell. Leading a path of poor defenseless men ravaged by their uncontrollable animal urges to hump everything that moves with my "Look at me I'm a flashy harlot!" battle cry.

Normally, I could give a rats ass that they think that. I know it's not true. Eventually when life kicks their ass enough to give them some perspective, they will know it's not true.

But tonight has been one of those nights that just break you. I've had a week long very significant flare up. I could barely walk. I've been beaten down by my own body once again. My middle son had a minor health complication that I've also been dealing with and I am so tired right now. The physical exhaustion gives way to depression and then we're really having fun.

Almost like a shark smelling blood in the water, my daughter starts in. I was discussing my next planned piercing with my hubby, and she started right up. "I think you should take them all out." It isn't natural, why do you want to call attention to yourself.....blah blah blah. I usually don't engage her, as I get pretty frustrated by the end, but since I am already at the end of my rope, I did. I (quite politely considering the mood I'm in) told her she was welcomed to her opinion, but I felt she was being outdated and dogmatic and I would do as I liked with my body.

Fast forward an hour or so and my 17yr old is fucking vague booking me on Facebook. He posts, "It's not outdated or dogmatic, it's the word of God!"

I have bent over backwards to not only be a loving example and contrast to the authoritarian regime at their dad's house, but I have provided them every comfort, even when I had to give up my own, because that is what a mother does. I have no regrets about it. But to be reduced to the importance of a god damned vague posting on social media?

So yes I'm crying and yes it's probably dumb that I'm crying. But my kids are the only people have the power to really hurt me. And I'm tired. And I'm just done.

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.