My Colorful Life

Every day since mid-August (two short months ago) I pinch myself. I can't help but think "Is this how 'normal' people feel? Like allllll the time?" It baffles me. I can't remember a time when I had this... much... energy. Seriously. Not when I was a kid. Not as a teen. Not as an adult. I wonder how long I've actually had symptoms of this disease?

Here's what I've been doing with this new energy source.

• Friends old and new. Relationships outside of my family have been incredibly hard to manage with my crippling fatigue. It feels fantastic to be able to devote some time to my friends. And I've made a few new ones recently. Nothing I could have even considered before.
  
  
  
  
  
• Gardening. My husband said the other day that I've "taken over the entire garden." He said it in a good way. He's been incredibly busy. 
  
  
  
  
  
• Home decorating. My house was in need of a facelift. I'm in the process of painting our fireplace wall and getting my home ready for some company.
  
  
  
  
  
• Entertaining. Having friends and family in our home before was exhausting. My husband had to do most of the work. It wasn't unusual for me to have to leave mid-party to go and sleep. I'm looking forward to winter holiday entertaining while conscious.
  
  
  
  
  
• Working out. I'm enjoying the gym very much. I took a yoga class for the first time yesterday. I loved it, but not as much as Zumba. I'm a high energy person now and have fun dancing with a room full of other people.
  
  
  
  
  
• Max. Poor Max. Before he would be stuck sleeping with me all day. Now I walk him twice a day (weather permitting) and he's with me as much as possible. Just this morning I walked him around the block. Now he's about to come with me to the store. Later today we're meeting a friend for tea. He's my little "adventure buddy" and he loves it.
  
  
  
  
  
  
  
  
• My hobbies. My husband and I recently did a Raku workshop that was long and intense. It was also located on a farm. Not wheelchair friendly at all. Nothing I could have done before, even if I had the energy for it. 
  
  
  
  
  
  
  
  

I can't explain what it means to feel fully alive again. I didn't get my "life" back. Instead I gained new experiences, new relationships and a more engaging future. My life is richer. Fuller. It feels like the movie The Wizard of Oz when it goes from black and white to color. My life as a sick person was black and white. Now it is so full of color that it's blinding.

Gentle Reminders

I have a few favorites in my journal. Things I like to go back and refer to. These two are particularly worth sharing today:

Yes!
One of the reasons I love gardening. 

I read a while back on another chronic illness blog that you can't live your life with sickness at the middle of it. I firmly believe that is true (no matter what the challenge is.) When you just go from appointment to appointment or even symptom to symptom you aren't really LIVING your life. You're just surviving. Of course there are exceptions to this. But typically to go from reaction to reaction is more damaging than the thing you're reacting to.

When I say "don't turn into your family" to myself it's a reminder to not just stop living. That's what my grandmother has done with her chronic illnesses and she's miserable. I don't know what she's living for. She just drifts from appointment to appointment from pain pill to pain pill. It's no life that I want to have. 

I try hard to remember this and instead of going from crisis to crisis I plan. I do. I go. I create. I invent. I discover. I explore. I may have to work around or with things, but I'm not letting these challenges rule my life. 

That's what the journal entry you see above was about. A reminder of things that make me happy and that make life worth living. If you're just going from crisis to crisis, always just reacting, then life isn't really worth living. Savor. Enjoy. Play!

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.

Pleasure to meet you!

Writing is helpful. Sharing stories is even more helpful. I'm typically a "holder of other people's stories" both professionally and personally, but I feel it's very healing to get your own story out in the world.

So, it's a pleasure to meet you! I'm "Atypical Dandelion." Let me explain. If I hear another doctor use the word "atypical" to describe me or my symptoms I'm going to snap. So rather than do something rash (or potentially illegal) I'm claiming that word. YES! I'm atypical. But that doesn't have to mean anything negative. I'm unique, distinctive, un-definable and defy all the odds. I'm "atypical." 

The "dandelion" stands for health, persistence, perseverance and fragility. I'm all those things too! I'm on a quest for health. I've learned to be ridiculously persistent. But at times I can run out of spoons and be fragile. Did you know that dandelions are super good for you? It's true! The root, flower and leaf are all very high in nutrients. Why it's considered a "weed" I'll never know. I find them beautiful and symbolic. They grow and thrive in the worst of conditions (much like a lotus flower) and carry your wish on the wind. If you ask me they're magical. 

I'm on a quest to heal myself. I'd like to trust others to heal me too, but so far that isn't working out so well. After my treatment for Latent TB 3 years ago my body just decided not to be doing so well. I'm still trying to get a solid diagnosis, but the best I can tell I have something autoimmune happening, a chemical sensitivity and gluten intolerance (not Celiac Disease.) 

(Good morning breakfast!)

After my rheumatologist appointment last week I was left with the helpful information of "we may never know exactly what's going on with you and we might just have to settle for a best guess." I found that incredibly depressing to hear. Of course she also wants to chuck more drugs at me without knowing exactly what's wrong. Maybe the 7 vials of blood I gave and the MRI I'll have Thursday for my hands will reveal something. I'm ever hopeful. After crying in the bathroom at the medical center and feeling extremely angry and un-heard I decided it was up to me to try and help myself. 

Three months ago out of sheer desperation to find something to help ease the neuropathy in my arms and legs I decided to test out a gluten free diet. I read that sometimes people who have been on long, high doses of antibiotics (like I was for the Latent TB) can develop a gluten intolerance. Right away I noticed a big improvement and that bolstered my confidence.

Although I don't feel like I can really "heal myself 100%" I do feel like what I eat and what I put on my body can seriously affect my health. So I came up with what I called "Plan Ass Kick." 

Plan Ass Kick is Underway!
The pink nail polish was a required mood booster.

Ditto for the pussywillows.

Plan ass kick is a combination of foods to avoid, supplements and foods to indulge in. I'm trying to avoid sugar (a known inflammation causer) and eating a lot of fresh foods. I'm making my own juice every morning with ginger, turmeric, kale, spinach, carrots and apples. I'm getting lots of rest and trying to avoid stress. I purged my beauty products of anything with chemicals in it. I'm using crystal deodorant and "mud" toothpaste. I gave Oil of Olay the kiss off and use vitamin E oil instead. Get the picture?

Its been 6 days since I started PAK. Maybe my neuropathy is a tiny bit better, but that's all I've noticed. But that's where patience comes in. Some medications for Rheumatoid Arthritis (the closest thing my Rheumatologist says she thinks I have) can take up to 6 months to start working. 6 MONTHS!!! So I think I can give it longer than six days.

My symptoms are too long to list. But my major ones are the neuropathy, dizziness, dry mouth, sleep problems, occasional brain fog, fatigue, chronic joint pain and loss of grip strength in both hands (mostly my right though). Cutting out gluten got rid of every GI symptom I was having, reduced my swelling and improved the joint pain. It has been helpful enough to make me go out of my way to avoid gluten as much as I can.

It's really scary not knowing what's going on in my own body. It's very frustrating when the specialists don't know either. It's incredibly exhausting trying to find answers, fight depression and communicate my needs to people who love me. Spoons are hard to come by and I'm hoping this blog will be a tool to help me hold onto some of them.