I’m Still Here

I’ve vanished from here for awhile and I thought I should pop in for a hi there! I’ve been swamped in school work but it’s nearly over! I just submitted my last big assessment from the couch and my last class is tonight! The last four days have been rough but I am moving forward. Despite this awful feeling I have gotten a lot done! I’m damn proud of myself! And when this gloomy feeling subsides I think I might feel like weights have been lifted!

Until next time here is some great humor I wanted to share!

I’ll be back soon with life and RA stuffs! Be well blog friends!

Stormy Fears

Clouds appeared in our normally clear blue skies. The temperature dropped. Doctor Who started up again. A familiar but frightening feeling came over me. It has nearly been a year since my severe onset and crazed Doctor Who marathons. April was the month my body showed me widespread agonizing pain for the first time. It returned again on a smaller scale but reminded me of the power of RA. Moving my body has been a painful challenge worsening in the past few days. Flare? Low pressure? Overdoing it? No reason at all? Who knows. For the past couple weeks my eyes have been dry, slightly painful and itchy, and sensitive to light. I have had this on and off for years. Each time I blame my eye makeup but, Google lead me to Sjögren’s. Who knows.

The medications are powerful but seemingly not powerful enough. I’m sad they cannot stop the pain nor create remission. It leads me to question my decisions. Sometimes I only see a world of greed and extreme differing views. Doctors and pharmaceutical companies push medications while alternative doctors push diet and supplements. Who should I trust? Both make money with their advice. My husband has been reading books by Dr. Fuhrman and the nutritarian diet. It’s a healthier version of our current vegan diet which includes mostly raw foods and only eating foods with the highest nutritional content. I love it. I also love the idea of food being my medicine. For now I remain in compromise with a combo of medications and diet. I am terrified to return to a year ago where days felt unbearable and the future doomed to great despair- especially to my beautiful family. There is no denying the medications have made even the worst days bearable but I am in constant fear of the consequences. On the other hand I’m fearful of the consequences without medication and the permanent damage of RA.

It’s fear that I will work through everyday. I will be better at recognizing that fear is just a series of thoughts that I can choose to grasp or roll away. Today I grasped them off and on leading me to naps awakened with gasps and racing heartbeats. Thankfully my husband is always right there to remind me that everything is really okay. The Doctor has also helped to ease my mind today… Doctor Who that is. BBC American has had nearly 24/7 Doctor Who and the new season has started! On another rad note it’s the beginning of avocado season. Take that storm and fear! Boom!

The Four Agreements

Guess what I got in the mail today? I’m SO excited to dig into this book! I’m determined and dedicated to live a new and better life every single day and these four memorable agreements will be included. It’s amazing how things can shift with awareness of thought and implementing changes. I’m powerful with my thoughts but how I use them is another story. I always need more Wisdom.

Here are the agreements:
1. Be impeccable with your word.
2. Don’t take anything personally.
3. Don’t make assumptions.
4. Always do your best.

I’m digging in!

Being Present in a Distracting World

It was as if I was invisible. My tires squealed and I veered to the right to avoid hitting a beige sedan that so carelessly pulled out in front of me. Although the accident was averted my body trembled and ached. Simultaneously, an overwhelming sense of perspective came over me. I was on my way to get my first Humira shot after a five week hiatus after fending off a yeast infection (of which I now speculate the validity which I’ll address in another post). I was mentally satisfied to be off of Humira as the risks are frightening and the haunting commercials certainly do not help. Pain has increased in the past couple weeks but still, it was a relief to my soul until the near car accident.

It’s no doubt that Humira is scary, but as the beige sedan inched its way closer I woke up. We all are not guaranteed a long life and it can all come to an abrupt end at any moment. I feel in these last few weeks, I have once again failed to be present. I easily distract myself perhaps as a coping mechanism. My quality of life has diminished (with pain increasing) but, I brushed it to the side, and pushed forward. Pain communicates that joint damage is occurring and I unconsciously ignored that. But, I am putting myself back on track and being aware and taking care. The start was my Humira shot, continued by going to the doctor, and now resting in bed or on the couch (the last couple days). Fatigue is getting the best of me which always brings insecurities on strong. It still seems so surreal (though I have experienced it for years) that randomly I am so exhausted and achy that the flu seems to be the only possible cause. I now know it’s RA. The flu goes away and this is a chronic reality that I am learning to make peace with. My body needs help so I am slowing down and learning to listen more carefully. Also, I am working through insecurities and fears realizing they are merely thoughts that I should observe not things I should own. While RA is not fun, it has taught me a tremendous amount and I am better for that.

Favorite Things on the Icky Days

Today the methotrexate hangover, fatigue, and the cold weather has made the couch my cushy friend. I tried to do a few things on my to do list but, it just isn’t happening. And ya know what? After a long talk with myself I’ve decided that it’s okay!

On days like this I have often become frustrated and tend to pick on myself- look at the sun shining- look at the list of things to do- look at those dirty dishes- look at those weeds- look at the floors- and on and on. Then I look at my list of accomplishments for the day and get even more frustrated and feel tremendous guilt. I did a load of laundry- wow I sarcastically think. Get off your ass and move, I tell myself sternly.

Forgiveness and acceptance are two things I work on very single day. On methotrexate hangover days and fatigue funk days I have to work particularly hard on those two things. I often blame myself for getting sick, like I could have somehow prevented it. I also have a hard time accepting how I cannot hop up and move my ass like I used to. I especially have a hard time when I try and fail. Realizing I cannot do it isn’t easy but, fighting with it is worse. I make myself miserable. It’s a choice that I make and can change.

Today was a challenge because it’s my last day before student teaching begins. Tomorrow is the big day and I have felt a range of differing emotions- excited, terrified, anxious, and fearful all at once. I have to get up at the crack of dawn and function. Today is my last day and although I don’t really have anything pressing to do I felt that I should be up and practicing for the big day. I also feel like I have forgotten something. I should have gotten up earlier the last week to see how I would do. I also should have gotten up early to acclimate my body. I should be doing more around the house to test my energy. STOP. This is a normal Monday for me. Hell, even if it wasn’t why am I picking on myself? It’s all okay.

I stopped the negative thoughts and focused on forgiveness and acceptance and diverted my thoughts to more positive things. I feel grateful I’ve been able to do some writing, look at, read, and watch inspiring things. I thought it would feel good to share some of my favorite things for the icky days. In no particular order…

1. Lightly scented Soy Candles. Okay, I admit it I used to avoid candles because I was afraid one of my kitties would light themselves on fire. Excessive worrier- yep that’s me! I’m workin’ on that about myself! Now I enjoy the sense of warmth, flickering light, and aromatherapy.

2. My electric blanket- it’s soft and comforting. My kitties also love it so I get extra warmth and snuggle time!

3. iPad- it’s my reader, social networking, and writing device. It was also a gift from my husband- Rad! I’m able to read and write in comfort thanks to this awesome device. Kris Carr, David Sedaris, Danielle LaPorte, Wayne Pacelle, Gretchen Rubin on the Kindle app- yes, please!

4. Comfy lounge pants- my mom bought me these awesome, super soft, pink polka dot, fleece ones for Christmas and they are my absolute favorite. I have several others that are also awesome.

5. Great Television/Movies- Doctor Who, Sherlock (BBC), Six Feet Under, and Sex in the City are all engaging and wonderful. I also have found several shows I love on OWN that are wonderful- Our America, Next Chapter, and Super Soul Sunday. I also thoroughly enjoy Ellen and Jimmy Kimmel. Netflix is also awesome- I most recently enjoyed Star Trek and Helvetica (nerdy things).

6. Animals- my kitties and puppies (one of my dogs helps me get up and around even- he’s perfect), reading about all things animals, vegan, victories, petitions, pictures, VegNews Magazine, sanctuaries. Animals and their welfare is everything to me.

7. RA communities/social networking/blogs- It’s nice to have so many people to relate to. I love RA Guy and RA Warrior and have no idea how I would have made it this far without them.

8. Pinterest- art, design, architecture, humor, fashion, food, awesomeness. It’s super inspirational- love it! The humor section just might be my favorite- I love to laugh!

9. Music- Spotify is the most amazing thing and it literally has saved me from losing my mind some days. Music really heals my frustrations and helps me to change my outlook. Jim James, Wake Owl, Alt-J, Bat for Lashes, and Ane Brun are some of my current favorite musicians.

10. Quiet- no devices, no music, no tele, just quiet.

11. Self improvement- looking for ways to be better and live better. It has been especially helpful to recognize my feelings, understand them, and adjust them accordingly.

12. Family- they always make me feel like a rock star and provide me great comfort. I am so very grateful.

13. Laughing- at myself, the silly puppies and kitties, books, articles, Pinterest, but my very favorite is my husband. He is so funny- it hurts (in a good way).

How do you get through the icky days?

Pillow Update

Looking at it as my husband pulled it out of the packaging, I thought it definitely would not work. Sigh. The pillow looks like its made to prop me up not sleep. What’s up with that? My husband jumped to action to get me setup for bed. He poured two liters of water (for the softest option) into the pillow and remained innately optimistic. He carried it to the bed and plopped down to try it out. “It’s super soft, I think it might work!” he enthusiastically said.

Given my husband’s support, optimism, and despite the pillow’s appearance I decided I would give it a try. The pillow initially felt nice and soft, yet supportive. As the night went on, I really struggled to be comfortable. I woke up stiffer than usual and felt discouraged but refused to give in so easily. It’s a big adjustment to go from sleeping on basically nothing to something.

Today, I would say I’m pretty happy with it! My neck hasn’t strongly objected and my shoulders have thanked me. I didn’t realize how much pressure laying so flat (on my sides) was putting on my shoulders. My biggest complaint is that I cannot flip the pillow over. The water is designed to be on the bottom with a cap that sticks out. I wish the water was in the center of the pillow with a spout on the side. Though, it’s pretty heavy so I’m not sure flipping would occur anyway.

Despite it all, it’s much better than what I have had. The best part is with time it’ll get flatter and will be even better! I’m so thankful for RA communities and folks sharing what works for them!

Swept Off My Feet

“Doctor says to skip Humira.” I knew those words were coming but, really wanted to yell LALALALALA over them to live in denial. A few days after the yeast trip up I noticed symptoms and after two oral treatments, my excessive and unwelcome fungal friend is still hanging around. Luckily, it’s nothing like what I have read it can be and it’s honestly hardly noticeable. But, it’s there which sets me back on my Humira journey. Sadly, I believe the Humira caused and kept the yeasty beast around. Though this is a bit disappointing, there are definitely worse things in life!

In an effort to improve and create a positive vision of my life, I recently bought an awesome inspirational/self help book. I am a huge fan of continually improving myself and love self help books. As I have already mentioned, Kris Carr is a rock star to me. She’s relatable while being able to be incredibly motivational and inspirational. Plus, she has a thing for unicorns! I recently found she has a Pinterest page and was super-duper excited about it. I quickly discovered the wonderful Danielle LaPorte, The Fire Starter Sessions, in her “Books Worth Reading” board. Ohmygoodnessitisamazing! It’s all common sense, as you would expect, but I feel it’s putting me back on track and allowing hope back into my existence. Many of the questions she raises in each session, as she calls them, I am unable to come up with answers. But I love that I have them in mind each day. I am a huge fan of the Secret book and audio and this brings me back to that space.

I was often waking up to fight RA. To conquer it. To kick its ASS! But, in reality that is the furthest thing I want to do. I greatly dislike fighting. I greatly dislike violence. Therefore why would I think and put out into the universe that I am going to fight this? It is because that is what society says to do- fight cancer, beat diabetes, and so on. I want to treat or cure RA NOT fight it. I’m done fighting. Fighting only ensues more fighting in a never ending war. I say no thank you- like I say to a yeast infection- YUCK!

Also, there’s this whole idea for those who are ill to not be a victim. The truth is I am a victim of RA. My body was duped into thinking that the lining of my joints are invaders and need to be destroyed- which is the definition of a victim. It is what it is. However, that does not mean I am laying in the fetal position, submissive, and/or complacent waiting to be beat. I accept, live, and cope with it to the best of my ability. Like the disease activity, some days I will handle it better than others. I will continue to care for my body, learn as I go, and apply necessary changes. I have a green juice and/or smoothie at least 5 days a week, eat a healthy plant based diet, mostly gluten free, have low stress, and will continue to grow and improve everyday.

RA has actually been a great gift in many ways. It allowed me to slow down, pay attention, look at the present, and plan where I want to go from here. Before I was floating, stressed, kicking ass, working hard, unaware, fearful, overworked, exhausted, sick, and out of touch. I worried about everyone and everything- but me. I had a lot of drama that was attracted to me. People needing help in every direction and I was completely unable to say no. What you think about, you bring about- it’s true. Though I love helping others, it can be consuming. It’s necessary to say nope not going to participate in this- not my life and won’t make it my life. I was an expert at taking worry to bed and lying awake at night trying to resolve it. The truth is that unless it’s my life I cannot change it. I can provide my best advice and then let it be free. If I start to head back to that place, RA reminds me no stress (or the pain worsens).

I initially started to fall with grief from hearing I would be temporarily pulled off of Humira. Inside I screamed and cried NOOOOOOOOOOO! Then an awesome reality check swept me off my feet saying- Look this is going to happen. You read it in the literature. This is not a surprise. You are going to get sick. When you get sick, you’re body needs help and that help is a higher functioning immune system. It’s okay. Your body will get to heal. It’s just the way it is right now.

I have a long way to go but, I’m learning and that feels rad!

Waterbed for My Head

My neck has been awful for about a week solid and one of the wonderful Facebook groups RA Chicks posted a question by a fellow RAer regarding pillow recommendations. Seriously, did someone read my mind? THANK YOU! I have been looking for months (okay probably years)! I even recently bought and tried out a pillow that seemed to be flat enough but, it wasn’t and instead felt like a torture device. My husband said he would wear it out and flatten it and let me try again.

I am sleeping on a seriously disgusting, ancient, and suuuuuuuper flat pillow because it’s that, a blanket rolled to the right height, or nothing at all. It’s bad. After looking at several of the suggestions, I decided this seems the best for me. I mean a waterbed for my head- rad! The runner up was the buckwheat husk pillow. Heck, I might get it too! Then perhaps I could… what do you call it… oh yeah sleep! Also, when my neck hurts it also makes me slightly nauseous. It’d sure be nice to wake up after a restful sleep without nausea! Fingers (figuratively) crossed!

I’m expecting my waterbed for my head tomorrow! I’m excited! I’ll keep you posted!

40 Yogurts a Day

I laid on the exam table with thin paper coverings and soft Gold Toe black socks stunned and horrified. Getting a physical is always mortifying/awful and this time it was particularly worse. “It seems you may have a very mild yeast infection” said the PA. A who, what, where, why, when, and how?

I had a friend who used to divulge her chronic yeast problems over lunch at our work. Yum? “The itching is so horrible today,” she would tell me. Thank you? Though I was unable to relate entirely because I had never had one, I would listen, feel sympathetic, and wince.

I stumbled around as I got dressed thinking… yeast infection? Ewww. No, but seriously ewww! How could I not know? Per my old friend’s persistent sharing of information it seems impossible to miss. There was a knock at the door and the PA came back in.

“I have a yeast infection?” I asked like a small child.
“Yes, it’s very mild,”she explained with ease and continued “you just have to to take a couple pills and that’s it. It’s no biggie! They’re very common.”
“But, how did I not know? I’m not even entirely sure what it is. I have never had one,” I whined.
“It’s very common that during a physical it is discovered because it can be asymptomatic for the patient,” she reassured.

After getting all my new prescriptions, I left the room like a zombie. How could I have made it 31 years and then all of a sudden bam- yeast! Like a good anxiety filled patient I could not let it go. I got home and immediately googled it and found a statement relating to those who had immune suppression because of automimmune or cancer treatments had a higher risk of yeast infections. After deeper investigation I found that TNF inhibitors (Humira) make you more prone to fungal infections, of which a yeast infection is one. The fun never ends with RA, right?

It may seem silly, but I was proud of not being able to relate to the Monistat commercials. Now, like the Humira ads, they seem to haunt me. My husband joked the other day that all I need now is a depression medication then I would be on all heavily advertised type medications. I’m surprised given how women are treated by many medical professionals that I don’t have anything to treat depression. Unless Xanax counts? I was prescribed Xanax to help me sleep when I was diagnosed and fired. I prefer to just lose sleep as I think losing sleep is a normal reaction to those things.

I’m going to head off to ingest my newly self allotted 40 soy yogurts a day. Let’s go probiotics! Only kidding of course, Ha!

Easy on the Yoga and Comparisons, Please.

I decided that I am lazy. Laundry was piled up, closet a mess, dust everywhere, dogs unbrushed and stinky, clumps of fur on the carpet, dishes stacked, yard- we won’t even go there, and what am I doing? Hibernating under the electric blanket. Television seemed to sense my sedentary ways pointing out that it lowers the number of years you have to live and increases probability of disease. Meanwhile, other people with RA compete in triathlons, marathons, and other physically strenuous activities. My cousin said she has a friend who has RA that is “the most fit person” she had ever met and even runs on the beach “every single day.” When seeking medical advice from Mayo Clinic and WebMD, I learn that exercise is not only beneficial but can also improve RA! I better get my ass on the move!

Though my knees and ankles ached and I did not feel well, I decided the blobby and inadequate feeling was winning. I found a light yoga video on YouTube and to got moving. I gently moved myself onto the floor and prepared for pose one. I completed the poses and dizzily made my way to the shower. My right knee hurt more than before and when I got out of the shower I noticed a bruise appeared. Oh, come on! Really? Really.

When I was working a million hours the house and yard work piled high. I never participated in a triathlon, marathon, or any related physical competition nor have I ever had the desire to do so. My cousin’s friend may have mild RA where the medications actually make her better- good for her! Let her run and be a super fit warrior! Meanwhile Mayo Clinic and WebMD can hang out in the dark thinking RA is another form of arthritis where exercise is the answer.

Comparisons are awful and for the most part I do not participate in them. However, I pushed when I shouldn’t have because I fell into the comparison trap and was scared to be viewed as lazy or unmotivated. More so I was scared of self judgement. If this person can do this with their ailment, if that person can do that with RA, if medical advice says this, and okay this is stupid. I’m not lazy. I have a serious disease that makes days, weeks, and months hard. Some days I need to celebrate moving from the bed to the couch. While other days I need to celebrate being able to dress, wash, clean the dishes, vacuum, do laundry, pull weeds, walk on the beach, and/or grocery shop. I know that when it is possible I will do what I need to do, exercise included. Before RA hit me like a ton of bricks, though I never did triathlons, I was super active. RA didn’t take away my joy of being busy and active, it made it impossible.

I had a few easier days since and I celebrated my ability walk on the beach, wash dishes, dust, clean the bathroom, grocery shop, cook, clean the closet, vacuum, and sweep the floor. Today, I am celebrating getting from the bed, to the couch, to the shower, and back to the couch under my warm electric blanket.