Knowing What Helps and What Doesn't

Knowing what doesn't work for me can often be just as useful as knowing what does. As my condition progresses I've been exploring and learning what is useful, helpful and working for me. But that doesn't mean that everything I try works out. Or maybe it helps at first, but then quickly doesn't help anymore.

Baths always help

Physical therapy just became one of those "not helping anymore" tools. It was helpful at first and I learned a lot about how to sit, stretch, squat and move safely without further injuring my back. But I never quite hit it off great with my physical therapist. Today I saw his assistant (a woman) who I thought would be a better fit. But once again I found myself educating her about what RA is, what my limitations are and why 90% of the exercises she was trying to do were painful/exhausting for me. (I did the same thing with the other PT. It's a spoon suck!)

You know what? I'm better off doing my own thing. Thank you PT, but I'm good now. My last bit of helpfulness was having her check out Meg and make sure I had her adjusted correctly for my height and that I'm sitting in her the way I should be. Yup! Got the green light. Now I fail to see the need to go back. 

Support is helpful.

Something recent that HAS been helping me is getting support online. I joined a website called "My RA Team." It's a bit like Facebook for people with RA all around the world. You can post how you're doing, share a picture, ask a question and comment on other people's posts. I've found it to be educational, empowering and supportive. We're all struggling with our health, so it's very reassuring and non-judgmental. 

I think a lot of people cling to what doesn't help just because it's what someone else told them it's what they're "supposed" to be doing. I tend to always question, listen to myself and follow my instincts. If something isn't working for me then I drop it.

Another recent addition that has been helping is my Lyrica. My new neurologist (who ALSO is very helpful) put me on it last Wednesday for my neuropathy. I've now slept through the night the past 3 nights in a row. Something that hasn't happened for me in about 10 years. Sleep is always helpful.

Can't Sleep

It's 4:44AM, but I've been awake since 3. Neuropathy woke me up again like it does almost every night. But this time I couldn't get back to sleep. My arms from my shoulders to my fingers were "asleep" which is a lovely word for "being eaten alive by fire ants." This happens to me regularly, especially at night. I wish they were "asleep" so then maybe I could get some sleep too?

I wish I could just sleep all day like my dogs.

Despite what my rheumatologist told me, neuropathy does go along with RA (and Lupus, which is another serious autoimmune disease.) It also goes along with TB, so I have a double whammy. I'm seeing another neurologist at the end of June (in a month). I saw one last year and it wasn't helpful at all. He tried me on Gabapentin, I had a major reaction and that was the end of it.

I requested someone new, so I'm hoping this year's appointment goes better. 

Well, at least I got my REM sleep requirement in!
Not so much on the deep sleep though.

Feels like a nap in my future.

I read this about neuropathy:

"Peripheral neuropathy produces symptoms such as weakness, muscle cramps, twitching, pain, numbness, burning, and tingling (often in the feet and hands). Symptoms are related to the type of affected nerve and may be seen over a period of days, weeks, or years. Neuropathic pain is difficult to control and can seriously affect emotional well-being and overall quality of life. Neuropathic pain is often worse at night, seriously disrupting sleep and adding to the emotional burden of sensory nerve damage."

I always find that a tad bit validating and comforting when a medical professional (or medical website) acknowledges that an illness is so much more than physical. When you can't sleep it just makes things so much worse. And YES! Having any chronic illness (mental or physical or both) is a huge emotional burden.

I wish I was Dr. Who and could wave my sonic screwdriver curing everyone I meet. Any kind of burden; financial, emotional, physical... they all suck. 

Me pretending to be "The Doctor."

I'm still a better real doctor than most that I meet.

I just want to be well. To sleep. To have medication that helps and works. To have medical professionals who listen to me. To not feel like crap every day. There was a time where I wouldn't think that was asking for the moon and stars. Now I feel like that will take a miracle. Or a sonic screwdriver. 

Vindication

I'm reading through my new copy of "Living with Rheumatoid Arthritis" and I come across this...

It says:

"In fact, many people with RA say that they just don't feel well."

This was mind blowing to me. Ever since my treatment for Latent TB that's exactly how I wanted to describe it. That I "just don't feel well." That something is wrong. The book goes on to discuss how RA is thought to be genetic in base, but that it's "triggered" by something environmental like a virus or bacteria. Then it goes on the specifically name TB as a potential trigger.

My mind was blown.

Vindication right there. I'd been telling my doctor and neurologist for over a year that something was wrong. That maybe I should see a rheumatologist. That I was having "stocking and glove pattern neuropathy." The neurologist, rheumatologist and my doctor told me that you don't have neuropathy in RA, but this book clearly says that you can. In fact the "stocking and glove pattern" is the most common type of neuropathy that goes along with RA. VINDICATION!

I can't begin to explain what a relief it was to read all of that. That a serious illness (like Latent TB) can trigger RA. That neuropathy can happen. That RA isn't always perfectly symmetrical (my right side is far more affected then my left.) All of these things in black and white. 

So now I have a NEW neurologist that I'm seeing at the end of June. Though the DMARD I'm on is really helping the neuropathy. It used to wake me up every single night, typically many times. Now I can sleep through the whole night, which I haven't done in about four years. I also spoke with my primary care doctor about getting a new rheumatologist. 

I was right and these specialists were wrong. I'm so glad I stuck with it and refused to back down. I was determined to solve what was going on with my body and now I have some answers. Best of all I have a treatment that's helping.

So trust your gut. If you think something's wrong, don't rest till you get answers. Don't let it consume your life, but also don't just let it go. This is a tricky balance, but one that's incredibly worth it.

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.

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.

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.

I'm Tired

I'M TIRED!!!

Not just as in "I need a nap" (but I think that I do.) I'm tired of all of it. I'm tired of looking up my symptoms online trying frantically to find some kind of answer for what's happening and why. "Progressive neuropathy, hand weakness, post INH treatment" is a common one. I look up peer reviewed journals, personal blogs, National Health Institute information. And trust me, I'm no hypochondriac. Quite the opposite. I "fake well" all the time. 

I do these things because knowing the name of your enemy is important. Why do you think names were always such a big magical deal in the stories we heard as children? If you know the name of your enemy, what it's after, what the plan is, then you can form your own plan and attack. To have no idea what it is that's happening to you, what's attacking you, is like fighting against mist. You just end up tired. 

Although I'm trying everything I can think of to help myself I'm still fighting against mist. I keep hoping for that one article or study that will suddenly bring it all into focus. But more and more I have to ask myself what I'm going to do if that doesn't happen?

I recently started a new job. It's a career that I've worked very hard for and it feels amazing to finally be here, earning money doing what I love. I'm lucky to be in a situation where I had the opportunity and means to figure out what my passion was and then chase that dream till it was mine. But I'm also a bit scared.

I'm scared that my body won't be "on board" with me working 40 hours a week. That I'll be too exhausted for anything other than work every day. That my weekends will be 100% recovery time. I'm worried "the mist" will try and take over what I love to do. 

I'm fortunate that I have a very flexible job and I'm in charge of my own schedule. That gives me a lot of options not open to many people in similar situations. But that fear in the back of my mind says "What if it just keeps getting worse? What if I just keep on declining and there's no magic 'thing' that puts me back together again?" 

My husband is fantastic (as I already shared) and doesn't hesitate to pick up the slack. He's also wonderful at reminding me of all the tools at my disposal. Like "speech to text" on my iPad if typing gets too hard. Or that I can just go to bed after work if I need to. We meal plan and shop together. I love to garden (when I can) and he's taken over almost all of the weeding duties for me. So it's very helpful having him to remind me of my options, hold my "paw" and tell me what a big brave fighter I am and that I can do anything I put my mind to. Even working 40 hours a week. Even (hopefully) finding some answers soon.

And now I wait for my new neurologist to call me to schedule an appointment and the results of my hand MRI. Waiting also makes me tired.

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.