No Germs!

I call this one "Someone was coughing at the doctors office today."

Thank goodness for free masks.

Settling In

I'm a very organized person. It has served me well in the past. I'm also a big "list maker." I never go to a doctors appointment without my list of symptoms and a basic timeline. When you have a complex medical history (and occasional brain fog) I find it very helpful to do these things.

At home I also have a "master health binder." It has printouts of referrals, important labs, evaluations and even a back section for relevant scientific studies and suggestions. It has been incredibly helpful on my journey down the rabbit hole these last few years. It's also bright pink, which makes me happy.

I've spent the weekend resting, enjoying my little family and settling into the RA diagnosis that I received on Friday. I also researched Plaqunil (DMARD I'm now taking) and learning what I need to do and watch for now that I'm taking an immunosupressant drug. 

What I've read is that I have to super watch out for germs and I'm at high risk for developing pneumonia if I get sick. I bought some things to help me stay healthy at work and am changing some habits at home. I'll share those changes in another post when I have more to report on.

GOD of all GF crackers!

I have to take the pills with food and have found that these crackers are a life saver. Before going gluten free I was a big fan of Saltines. Like the Dad in "My Big Fat Greek Wedding" (his obsession for Windex) I was convinced that any tummy remedy could be cured with ginger ale and Saltines. Well, these are my new Saltines. 

I've also been getting pampered by my honey.

I'm not a big alcohol imbiber... Actually that's not true. I very rarely drink, but when I do, I tend to "indulge" a lot. No more of that on this medication. My rheumatologist told me 1 drink a week or so is fine, but no more than that. Since I don't really enjoy "1 drink" I'd rather skip it completely. Enter the "mocktail." 

This was as good as it looks

I couldn't drink when I was on the medication for Latent TB too, so I'm no stranger to the mocktail. I learned that when socializing without booze it's nice to have something that looks like what everyone else is drinking. It's also what I blame my rootbeer addiction on. For the record, Henry Weinhards is the best (even if they use high fructose corn syrup.) 

Yesterday was a bit of a weepy day, but I can say in all honesty that I feel worlds better today. It's amazing what a lot of love and a good night's sleep can do for your spirit. I've also been slowly sharing the news with some people close to me. So far they've been very supportive and understanding. 

I'll happily report back on the Plaqunil when I've been on it longer. I tend to be very sensitive to medications (and chemicals) and drugs tend to work very fast for me. Now if anyone has any tips for the fatigue, I'm all ears!

Feelings About New RA Diagnosis

Today my rheumatologist called me at work to let me know that with the combination of my recent MRI on my right hand the bloodwork she’s confident in saying that I have rheumatoid arthritis and she wants me to start taking medication for it right away.

I’m going to be starting down the path of DMARDS (anti-rheumatic drugs) that “suppress the immune system.” If that sounds serious, it’s because it is. But from what I’ve read it’s much more serious to not take medical action. I’m picking up my prescription for Plaquenil (Hydroxychloroquine) tonight on my way home from work.

She also said she doesn’t think the RA is what’s causing the neuropathy and that’s likely something else entirely. She feels we caught the RA early. That’s hopeful.

After the call I stepped outside to visit some dandelions.

So now the plan is to keep the appointment with the neurologist then go back to the rheumatologist after seeing that person to check in on how the drugs are going and if the neurologist added anything or found anything new.

I’m feeling many many things.
A sense of irony that I got the call on Friday the 13^th. Relieved to finally have a diagnosis and some sense of hope with treatment. Feeling this is unfair that I have to go through something else after having Latent TB just a few short years ago. Happy to have someone trying to alleviate the pain of what I’m going through. Lucky that she got back to me and that I even have access to medical care in the first place. Angry that it feels like this trip isn’t over yet and there’s still more to find out. Grateful to have such a supportive partner who “gets me” and is there for me. Scared about the side effects with my new job. I’m feeling all of these things all at the same time.

Overall I just feel like FINALLY one piece of the puzzle plunked into place. I was hoping that would be the whole puzzle, but at least I have that one f*@&ing piece to cling to. Some of what’s going on is RA and it can be treated. Not cured, but treated. But I am scared that the treatment will be worse than the condition. Everything I’ve read tells me “no.” That “treatment isn’t optional.” But I’m not a trusting person by nature.

I still have so many questions. Will I get any side effects? How will this medication change me? Will my RA get worse even with the medication? (many people are on more than just 1 thing.) How many drugs will I end up needing to take? What if the rheumatologist is right and there’s something else going on along with the RA? What if that’s worse?

I "needed" a treat after all the stress of the day.
Yes, that is a sport sock on my cup.

Don't judge me. It works.

Want to know what my biggest fear is? My #1 biggest fear is that I've spent the last 10 years learning, working and training for a career that I won't be able to do. What if "brain fog" takes over and I can't work? What if I'm too exhausted to be able to work very much? So yes, I have fears about those things. But I also remind myself that I live in a time with wonderful assistive technology. I also have a very non-physical job. It doesn't require me to be physical at all actually. So as long as I can talk and think, I'm pretty golden. You can't say that about many careers. 

I'm also fiercely independent, tenacious, persistent and resilient. All the things you need to be to do battle with any form of chronic illness. What chance do fears have against Ninja skills like that?

Patiently Being Impatient

I've become an expert at patiently being impatient. Patience is not one of my many (many) virtues. I've never been a patient person. However, when you're a patient, you HAVE to have patience. When my son was little there was a Sesame Street song that just nails it. It goes "You have to be patient, to be a patient..." Oh Maria, you wise a$$ woman you. 

So here I am. Patiently waiting to hear back from my Rheumatologist about a question I asked her. Patiently waiting for my May 1st appointment with my primary care doctor to explore anything I can do or take that might help while I PATIENTLY wait for my June 27th appointment with my new neurologist. See... that third one got me. I'm out of patience (and apparently can't spell "rheumatologist" to save my life.)

My BFF - the cup cozy for all cold things

And meanwhile back in pins, needles, numb, temperature sensitive, fire-ants-are-eating-me-alive land, I breathe and remind myself to be patient. 

I read this really wonderful quote yesterday from The Book of Joy. "If something can be done about the situation, what need is there for dejection? And if nothing can be done about it, what use is there for being dejected?" -Shantideva

I just adore that word "dejected." YES! I feel dejected! I feel it hard core! To my gut! To the PAIN (a little Princess Bride humor for you there.) And to force myself to instead feel hope, optimism, patience, is no simple task.

The Dalai Lama says that "As we recognize others' suffering and realize that we are not alone, our pain is lessened." I completely agree. I think that's one of the reasons I enjoy reading other people's blogs about chronic illnesses, autoimmune disease and other challenges similar to mine. It makes me feel not so alone. And when I see that someone has similar symptoms or struggles, it feels comforting AND validating.

Most of the time with doctors I feel like I'm trying to describe a world to someone who has no sight. It's just impossible. To share with others who can see what I see and feel how I feel is incredibly liberating. It gives me hope.

Spring is a time for renewal. 

I'm doing my best to join in on the growth!

The Dalai Lama also says that "The way we heal our own pain is actually by turning to the pain of others." I do notice that while I'm at work hearing of other people's deep pain, mine slips away. For that hour I can focus on comforting someone else rather than being the one who needs comfort. It is a very healing experience (hopefully for us both.) I feel very fortunate to do what I do.

I'm working on reaching out and sharing more of my experience with others. Making new friends and opening up more. For today I wish you good health and lots of love and patience.

My Lucky Day!

A picture can be misleading. Despite that evil grin on Jack Skellington's face, today really was my lucky day. Why? I'm glad you asked!

One reason is that today (well, yesterday) was the first day at my new job that wasn't just training. It was me... doing what I love... and it felt wonderful. I'm very happy at my new place of work and I think it will fit me wonderfully. I feel fortunate to have found such a great place. The hard-earned next step in my career. Also, working and keeping busy takes my mind of more stressful and painful things. I feel a lot better when I'm busy. 

Another reason was I treated myself to a little bauble. Etsy is one of my favorite places to shop. I love supporting small businesses and artists. And I feel VERY lucky that I have the means to do so. 

Beautiful little jade sharks

Yes. I love sharks. Call me a hipster, but I loved sharks WAY before "Shark Week" was such a big thing. I find them beautiful and terrifying. Just like life, right?

It was also my lucky day because after my REAL work day I got to come home to a family dinner. The crock pot is a fantastic invention. We had delicious chili that my husband claimed was my "best chili yet." Enjoying a comforting meal with the two people I love more than anything on this planet left me all warm and tingly all over (and no. That wasn't just the neuropathy.) 

So yeah, my key snapped in the lock. And no I haven't gotten my MRI results back. And yes, it looks like I'm on another very long wait list for a new neurologist (that's IF they even get back to me, but I'm sure I'll have to chase them down every few weeks.) But I also have a family who loves me. A job that appreciates me, a warm house full of love to come home to every day and resources to indulge in. So YES! I am very lucky, fortunate, blessed, favored, charmed... And I'll try my best to see that every day.

Totally unrelated 

My new favorite dessert.
GF bread with french butter and wildflower honey.
Actually it is related because it looks like a "liquid luck" potion from Harry Potter to me.

Find Your Heroes

I have many heroes, but I'd like to introduce you to two of them. You'll notice an intimate connection although their paths never crossed.

The first is the Dalai Lama:

I first fell in love with the Dalai Lama about six years ago. I was hired to work at a lab and the lead scientist did research in meditation and had met with the Dalai Lama before. This meeting had changed his life for the better. He shared that experience with me and I became curious to learn more about this amazing man.

I watched some videos on YouTube of him talking and was immediately struck by two important things.

1) He does not rush. If he can't find something he needs, even if a stadium full of people are waiting to hear him speak, he pauses and slowly finds what it is, leaving everyone waiting. It's ok to wait. It's ok to not rush. There was zero fear in him of disapproval. No awareness of judgement. That amazed me.

2) He 100% still has his child-like sense of humor and wonder. He laughs often (and sounds just like Yoda from Star Wars when he does) and easily. He jokes and plays around with those close to him. He's fast to show affection.

I find those two qualities to be very important in weathering adversity. Take your time, don't rush, be patient with yourself and always keep that little kid happy and let it play.

The second hero of mine is also a man. I do admire many many women (for some reason Grace Jones is jumping to mind right now), but these two have something special in common.

The second one is Viktor Frankl. He was a neurologist, psychiatrist and also had a Ph D in philosophy. He's famous however for being a Holocaust survivor and for inventing something called "Logotherapy."

 Why I love this man is his theory that "striving to find meaning in ones own life is the primary most powerful motivating and driving force as humans." The tenets of Logotherapy can be summed up as "Life has meaning under all circumstances, even the most challenging." If a man like Viktor can find meaning in a Concentration Camp, then surely I can even while struggling with health issues. Nothing like a little perspective!

Viktor believes that spirit is the will of the human being and that we create meaning in three ways.
1) By creating work or doing deeds.
2) Experiencing something or encountering someone.
3) By the attitudes we take toward unavoidable suffering.

"Everything can be taken from a man but one thing, the last of the human freedoms-to choose one's attitude in any given set of circumstances."

These set beliefs gel perfectly with the Dalai Lama's beliefs on human suffering.
"From the moment of birth, every human being wants happiness and does not want suffering." But he goes on to share that he feels suffering is optional. If you embrace joy (which is different from happiness because it comes from within) then you will never suffer. You will have pain and hard moments, but it will be temporary.

What both these men share is the stressing of AGENCY. That it's US who control our joy. That even when we feel like we have no choice or that things are just happening TO us, we can always control our own thoughts and attitudes.

Words have great power. They can hurt or heal. I am careful about what words I use to myself. I also try to always remember that even when I feel like I don't have any choice, I ALWAYS do.

Self Care Day

Today I have a date with a Queen. And with myself. 

I like to make Sunday a time for "self care." That means giving myself a nice facial, perhaps even taking a bath. But today is even more special. Although I adore my in-laws I opted out of a day of visiting for staying home alone and really amping up my typical routine.

First up: The face mask

Because I am keeping away from chemicals (and because I'm a creative self-sufficient soul) I like to make my own face products. This lovely swamp-green face mask is actually a mixture of European clay, jojoba oil and neem oil. I love all three. Smear it on good and leave it there for about 30 minutes or so.

You can play with the ingredients based on your need. If you're having thrush or a yeast problem add unsweetened full fat yogurt & some honey. If you're having a break out problem add a few drops of tea tree oil. Get the idea?

While that's sitting on your face you can mix up the next step. Or, if you're a rule breaker you can even do this scrub BEFORE your mask.

Mouth Watering Scrub:

First combine regular white sugar (it has the best texture) with a bit of coconut oil, instant espresso and cocoa powder. Put it in the microwave for a few seconds (no more than 30) and mix.

This is what you'll have! If you want to know why I picked those ingredients, feel free to give them a Google (you lazy rule breaker you.) Each one is beneficial for your skin. After you rub the mask off your face with a warm wash cloth (or before), you'll liberally apply this to your skin and gently scrub. GENTLY!!! You don't want to abrade yourself. 

Feel free to make up a big batch of this and use it all over your beautiful body.

After my scrub I'll be taking a lovely soak with this bad boy. It's my favorite "treat" that I don't eat. Nothing bad in it either.

Though I have to remember to not get the water TOO hot because that can really ramp up my neuropathy. Ohhh temperature sensitivity. I remember life before your bossy influence.

After a wonderful soak (where I may or may not read in the tub) I have a date with this lovely lady. I'm on Season 2 and enjoying every guilty minute of it. 

I hope you're having an equally indulgent Sunday.