Woman of ACTION!

I think we've all heard the quote by Alexander Graham Bell "When one door closes, another door opens." But did you know that's not the full quote? The full pearl of wisdom is...

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us."

Today is my last day at work. The agency I work for (helping other people) is shutting down. There was no notice, no severance package and it has been incredibly stressful. In fact, "incredibly stressful" perfectly sums up my month of April for 2018. I can tell the stress is getting to my husband too who has his own demanding career.

When massive stressors come into our lives, it's very easy to just freeze up and stare at that closed door. And stare and stare and question. So much so that it's easy to miss other opportunities and options.

Take a life changing diagnosis. It's easy to stare at the closed door of things you can't do, or shouldn't do and completely overlook what you still CAN do and ways you can adjust your life to do them.

Now taking Plaquenil I learned that I need to keep out of the sun as much as possible. I could stare at that closed door... or rally some assistive technology to keep on doing what I can.

Take THAT sun!
I'm a full shielded vampire ready for some nature.

I found this compact UV sun umbrella on Amazon (no affiliation). It folds up small enough to keep it in my purse. It's good for short bursts out in the sun. If I was going to be out ALL DAY I'd use something else. But for a short little nature walk with my husband this weekend it was perfect. 

I also did a short burst of twilight gardening Saturday night. As soon as the sun went down I covered up (no mosquito bites) and enjoyed some much needed time in the garden.

My spring onion haul!

I wasn't out there nearly as long as I used to be, but I was still able to get a little bit done and it felt great. Plus we had some delicious onions for dinner.

I've been modifying how I do things to accommodate my current needs. I've also been hunting for a new job... Nap anyone?

My compression gloves and nap buddy.
Zzzzzzzz.

I would say instead of staring at the closed door I've jumped right down the hall and am searching for what's open. Sure sometimes I look back at that closed door and feel sadness. But in general I'm just trying to find my "new normal." I'm really looking forward to that. And a nap. Never enough naps.

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.

Depression and Chronic Illness

I don't like the term "Big Black Dog" for depression. Dogs are loyal and funny and awesome. All they want is tummy rubs and bacon. Depression wants your joy, your playfulness and your hope. Not the same thing at all.

I've been struggling with depression the last few days. It all just feels like a lot going on all at once. Losing my job and starting Plaquenil (after the RA diagnosis) has just left me worn out. It's not just being laid off either, but the entire agency I work at is shutting down. So there's been a lot of miscommunication and uncertainty creating a ton of extra stress. And then there's trying to do what's best for my clients and make their transition as easy as I can. No wonder I woke up with a major flair the other day.

Despite feeling completely overwhelmed, depressed, angry, sad, upset and even hopeless at times, there are a few things that help me.

#1) HUMOR!

My favorite shark "Bruce" taking a night time sip from MY Disney Frozen cup.

Yeah, that's right. I own a stuffed shark AND a Disney cup.

You should try it. It helps. 

Humor is a HUGE part of my relationship with both my husband and my son. We make up funny songs, send each other silly memes and joke around a lot. Depression hates laughter. So watching a funny movie or TV show, or just spending time being child-like is incredibly helpful for me when I feel depressed and hopeless.

#2) Writing or Drawing about my feelings

My journal is a great place to get out feelings like these.

Some days are worse than others.
Monday was a bad day.

Sometimes I don't want to share my feelings with another person. But it does feel good for me to get them out. My journal is an important part of doing that for me. In it I can be funny, encouraging and hopeful. But I can also vent some darker thoughts as well.

#3) Being pro-active

My new jammie rack

A helpful way that I deal with any new situation, especially a stressful one (or one that can feel overwhelming) is by taking action. As I adjust to what it means to have RA and peripheral neuropathy I learn what's good and helpful for my body and what's hard and damaging. 

For example, digging through the freezer with bare hands? Bad. Holding cold things. Bad. Trying to pry open the drawer of our 1950's dresser every night to get my pajamas out? Bad. Going barefoot all the time? Bad.

Soooo... last night I took everything out of my "super hard to open" dresser and hung them on this wall hook behind the door instead. Now everything's eye level and easy to get to (and put away.) And my husband gained another drawer. Win-win. And since this is behind our door and we keep the door open almost all the time, you don't even see it. Problem solving at its finest!

This gives me a sense of accomplishment and taking care of myself, both of which Depression hates. Almost as much as it hates a sparkly Disney cup.

Seriously? "Reduce Stress!?"

The #1 advice I read over and over again is "reduce your stress." These articles/books/blogs will often go to on suggest "take deep breaths" or "go for a walk." Now I'm not saying these things don't work, or that it's a great idea to try and keep stress down. But you know... life happens! Like this gem I encountered today.

Are you serious?

I spent an hour on a major company website filling out a detailed application only to have it eaten and vanish when I hit submit. That's real life stress right there. Not to mention I'm having to job hunt again after only being employed for barely a month. But I'm supposed to just not let it get to me and go for a walk?

Well, it's no surprise that I woke up to a bit of a flare this morning. I also was really busy this weekend. And despite my husband making me take breaks, I still managed to do too much. My hands hurt and were stiff. The worst since starting the Plaquenil. I was thirsty all night and just felt sore this morning. Oh! My face is also breaking out. Yeah that's the face of stress.

But back to job hunting for a second. 

This is a standard question all employers ask. I never thought much of it before today. (click on it to see it larger if you don't read chicken scratch.)

So I ended up checking "no" because the descriptive words they used were things like "substantially limits a major life activity." And frankly also because it's not their business. So far I can work around all of my needs just fine. If I required some ADA services or major accommodations that I couldn't provide for myself I might have checked "yes."

I really hate that employers expect you to disclose something so deep and personal in such a way. In fact, I think it's really awful. And there's the "s" word again, right? "What if I mark yes? Will they not hire me because I said I have a disability? If I mark no and later need accommodations will they fire me for not disclosing sooner?" These are real life concerns.

Another reason I marked "no" is that I'm still figuring all this out. Until I know 100% what's going on I don't think my employer needs to know. 

So yes, I try my best to keep stress at a minimum, but some days I'm more successful than others. And after 2 hours on a cruddy website I was rewarded with this alert.

YAY! PICK ME! PICK ME!

I've applied for 5 jobs this morning and I feel good about them. I'm hoping something will come through soon. Now excuse me while I go eat some breakfast (food always lowers my stress.)

Looking "Sick" and "Tired"

Friday evening my husband and I had a spontaneous walk through a beautiful rose garden. It was the same day I found out I would need to be job hunting again and my spirits were a little low. There is nothing like the touch, smell and sight of nature to heal your soul. I always feel so revived after a little time in nature.

But there was something that struck me:

Before - Friday night

I'm sure my husband would disagree, but in reviewing our pictures that we took I had one thought running through my mind. "Who is that sick, tired looking woman!?" Even in the best picture that he took I thought "That's accurate and looks just like me, but I don't like looking like that."

So part of that is out of my control of course. But fortunately since I'm a woman and my culture supports (nay, ENCOURAGES) me to change my appearance whenever I wish I have many tools at my disposal. The most obvious choice was to dye my hair.

Weapon of choice

I go back and forth (and back and forth) on coloring my hair or not. I'm lucky to be in a field where not only do I not have pressure to look a certain way, but looking older actually adds wisdom and credibility to the things I say. I also hate beauty routines for the sake of just doing them. Conformity. Feeling like I "HAVE" to do something to myself on a regular basis. Coloring you hair can easily become something you feel like you HAVE to do and I hate that. 

I also admire women who don't color their hair. I consider it to be a very feminist act of rebellion in our "youth obsessed" culture where women aren't allowed to age or look their age.

BUT... on the other hand... I also felt like my body wasn't really my friend right now. That I was showing outward signs of a losing battle. I felt I looked much older than what I really am and that frankly I looked "sick." As I said, I need to be job hunting and I really want to look and feel my best! I want to feel pretty and confident and not look like I just really want to crawl back into bed (even if I feel that way.)

So yes. I decided to color my hair.

After

I went with a color as close to my natural color as I could get. I like the look of dark hair, light skin and blue eyes. I also didn't want anything TOO dark as that's pretty high maintenance. I'm a DIY kind of girl. I HATE spending money at a salon and having people talk at you for hours only to pay 100x as much as you would if you just did it yourself. 

And yes, I am aware of the hypocrisy that I'm trying to cut out chemicals, but then I go and dye my hair. What can I tell you. I'm an impulsive enigma. You know what though? I do feel better! I was very happy with how it came out. It was just what I hoped for. I feel prettier and subsequently healthier. My hair also looks thicker and like I have more of it. That's a big deal for someone with Hypothyroidism. 

I'm glad I acted impulsively. I'm glad I listened to what I wanted in the moment, even if it seemed counter-productive to my health (dousing myself in chemicals.) I hope it will give me a confidence boost to land my next job.

--------------------------------------------------------

Are you wondering why I never show my face? The governing body that regulates my profession dictates that if I share anything personal about myself. Even on a personal blog. Be it my full face or name. Then I have to provide a ton of other information that I really don't want to be made public. I also don't want one of my clients accidentally stumbling on my blog. It's a personal place to share and vent and I hope it is helpful to others. If I were you, I'd be wondering why, so I thought I'd share my reasons.

ENOUGH Lemons Already!!!

I've always really hated that saying "When life gives you lemons make lemonade." How about "When life gives you peanuts, make peanut butter." I've been making lemonade and peanut butter all week. But yesterday a really big challenge came my way. My new job that I've been at barely a month let all the staff know that the agency is closing. They might be bought out by another agency (one I don't care for) or they may just close. I was crushed.

I hadn't even been on my RA medication for 1 week and now I have to job hunt all over again. I know I'll find something else, but it will take every spoon I have and then some. I'm also very sad to have to leave my clients, people I had just started to get to know.

As devastating as all this feels, it's helpful to remember a few important things.

1. It's ok if I don't make much money for a little bit. My husband's a hard worker with a good income. He busts his butt to support us, so that's a bit of pressure off. We won't starve and can pay our mortgage. 
2. Maybe this new job will be an even better fit?
3. The Plaquenil is helping and I'm feeling better than I was even when I was job hunting a month ago (and I'm sleeping much better, which makes a huge difference.)
4. I have love, encouragement and support of family and my husband.
5. I have some very good leads. My supervisor gave me 4 people to contact in my town about a job and I found another promising one on Indeed.com this morning.
6. I've done incredibly challenging things in the past and overcome a lot. I know I will in this case too.
7. I still gained good experience and met new people, even if I wasn't there as long as I'd hoped.
8. It sounds like I'll still have my job for about a month, so I still have a little money coming in. Not a lot, but it's better than nothing.
9. I was worried about working full time AND my body adjusting to the new medication all at the same time. Now I think I'll have a little bit more of a gap to adjust to the medication before working full time hours.
10. I have faith that everything happens for a reason. That's a comforting thought. I do believe there's a plan for all of us and that suffering comes when you try and figure it all out. Sometimes you just need to trust and be willing to do your best (while letting the rest go.) I've absolutely done my best and this situation is no reflection on me personally.

Try and have some faith and trust.

One more thing worth mentioning...

I honestly believe there's no such thing as a "horrible week" or even a "bad day." There are challenging moments and easier ones that all come and go. Even though this week as a whole felt especially challenging, it did have its bright spots.

My mom sent me this double orchid plant after I told her about my RA diagnosis.

It was a bright spot in my week.

A dear friend sent me this notebook with art that she did on the cover.

When I feel loved by those in my life and thought of it can make a world of difference. A text from my son can brighten my moments. Having coffee in the morning with my husband can start my day off right. All these things give me spoons and are so important when feeling overwhelmed by life.

Ways I Help Myself (THAT WORK!)

Living with an autoimmune disease has been a big adjustment. Aside from all the medical sleuthing and endless doctors appointments. Just keeping healthy and finding things to make me more comfortable has been an expensive game of trial and error. I'm very fortunate to be able to afford "complimentary care" for my condition(s). But I know not everyone can. With that in mind, I thought I'd share what has been helpful for me over the years.

1) Animal Therapy.

The year that I was treated for Latent TB I took a very long nap every day. Every time I'd go lay down my dog "Sweetie" would come lay down with me. She wouldn't get up again till I got up. Although dogs are a huge commitment and not for everyone, I don't know how I would have gotten through that year without her. She's still my best buddy and always there for me.

2) Pinterest. 

I don't like social media, but consider Pinterest to be more of a "visual bookmark" or "bulletin board" than social media. Pinterest has been a great place for me to keep my sense of humor and look up relevant medical things. I've found wonderful items, blogs and websites through them. 

3) A very good probiotic.

I read some research recently saying that a probiotic containing multi-Lactobacillus can be just as effective at treating peripheral neuropathy as Gabapentin. Although I don't find THAT to be quite the case for me, I figure it can't hurt after being on antibiotics so long. File this one under "can't hurt, might help."

I'm currently trying out some new things to keep my immune system health. My own pen/stylus for my purse so I don't use the one at the check out stand. Paying more with Apple Pay so I don't handle money. Keeping disposable gloves, face covers, cup covers, hand sanitizer and disinfectant spray on me at all times. I tend to over-correct when faced with a new challenge, then right-size after a few months. It gives me the feeling of control when really I have little. 

The Plaquenil seems to be helping so far. Today is my last dose at 200mg. Tomorrow I start taking it 2x a day. Here's what I've noticed:

Pro's:

+ My hand joints are less stiff, sore and painful.

+ My lower back pain (that I've had at least 18 years) is much less severe. Like from a 9 to a 5.

+ My morning joint body pain is much less. Like from a 6 to a 3.

+ My nocturnal thirst and mouth dryness is much better than it was.

Con's:

- I'm even more tired than I was before (which is saying a LOT!)

- My neuropathy is the same (though I was told it may do nothing for that.)

- I'm itchier (which is also saying a lot.)

- *Dizziness slightly increased at first and is tapering off now (but still far from normal.)

- *I had a bad headache the first day, but it went away.

- *My stomach was sensitive at first, but it went away. 

- *Had 1 night of "peeing like mad" then it went away.

Overall I'd say it's doing what I'd hoped with fewer side effects that I'd feared. It's also only been a week. I'll make sure to keep reporting on how it's working (or not.)

Something New

Even though it's only been a few days since I got the RA diagnosis I've learned something new. RA doesn't like to travel alone.

A few months ago I began noticing that my right hand especially had become EXTREMELY sensitive to cold. By that I mean if I touched something cold it felt like my hand was on fire and all the skin was melting off. This happened a little in my left hand too, but my right hand was much, much worse. Yes, I told the rheumatologist about it. No, she didn't comment on it.

Then about a week ago the middle 3 toes on my right foot felt freezing cold. But when I touched them they felt normal. Very odd and that's never happened before. Fast forward to yesterday and I woke up to this:

The middle toe on my right foot was really swollen and blue/purple.

And no, I didn't "do" anything that would have caused this.

I took this picture so you can see the difference and messaged my rheumatologist. She had an odd vacation response in the message center saying she was "out till 2020" so I sent it to my PCP too. I'm guessing she just stinks at technology, but I still haven't heard back from her.

My PCP, who is GREAT at getting back to me, got back to me by the end of the day. Here's what he had to say. "I am unsure of the cause of your symptoms but this could be Raynaud's which could be related to Rheumatoid disease. Did you hear back from (rheumatologist name.) So I looked up Raynaud's Syndrome and sure enough, the symptoms seemed to fit. 

I read that one way to test it is to hold something cold for a few seconds only. If your skin turns white, you likely have it. It also goes along with autoimmune diseases like RA, Lupus and some others. 

Curious scientist that I am I got up this morning and took a cold cup from the freezer and held it for a few seconds. Not much change on my left hand. I tried it again with my right. The difference was immediate. The parts of my hand that came in contact with the cup turned white. This was after holding it for about 3 seconds (I'm not a glutton and it was painful.) 

Same lighting, same location after 3 seconds of holding something cold.

They haven't turned blue, but still feel cold about an hour after doing that. So it looks like it could be Raynaud's.

Unlike RA it doesn't look like Raynaud's is very serious. You need to avoid touching cold things with your hands, wear socks, stay warm. If I you get a lesion or sore on your hands or feet you need to have it seen to. That's about it! 

I also found this NY Times Q&A on Raynaud's to be particularly helpful.

Yes it is!

My husband and I made some jokes about how I went 1 day without a diagnosis and "be careful what you wish for." I reminded him that it wasn't really a diagnosis, but more of a "Huh! It could be this..." which isn't the same thing. But truth be told I was a little shocked. 

I've had many symptoms for so long that I know them inside and out. I know what helps and what makes them worse. I can tell you about them in detail. But this was all so new and sudden that it really took me by surprise. It also left me with some new questions. Biggest of them is why is everything happening to my right side?!?!?!

From what I've seen and read asymmetry isn't all that common. Most people with RA have symmetrical symptoms. Is that fact that mine are more like 80%/20% unique? Or does it mean I have something else going on? Time will tell I guess.