Maleficent

First off, an update since I have spent so much time bitching and moaning about my health crisis of late on this blog….

I am feeling better.  I’m afraid to hope for or announce that I might be nearing chemical remission for fear that I might be thrust back into the fire so to speak, but I am.  Feeling better.  Surfacing. Breathing easier.  One day last week, I realized at 8:45 am that pain had not asserted itself into my consciousness yet,  I had to tip my head right and left and bend my thumb to even feel twinges of the pain that has been ever- constant since last fall– and I was euphoric.

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I saw Maleficent last night and it was magnificent.  Spoiler alert if you’ve not seen it, because I feel compelled to share some of the lessons of this stunning fairytale back story.    My favorite quote of the movie has a personal significance to me:

“I had wings once.  They were strong, but they were stolen from me.”

So here are some of the lessons shared in this captivating film:

treelady

Trees are formidable foes and terrific allies.  

True loves does not come quickly or in a flash.

There are no wicked beings, only souls that have been crushed or abused.

We all lose our wings at some time or another through loss or betrayal; the direction we take after this is a choice.

No matter who or what steals our wings, love can bring them back and restore them fully.

Parenting and nurturing has little to do with biology.

THE LOVE of A CHILD IS THE PUREST AND TRUEST FORM OF LOVE.

mommy

We will find the truth generally more complex and beautiful than our assumptions.

Disney is finally beginning to “get it.”  Girls are more than princesses and they don’t need men to rescue them.

Villains can become heroes, especially when they are survivors.

and the most important lesson of this story…

love-never-fails-source

How long do I have to wait for some biologics?

I’m having a bad day.  Hell, I’m having a bad week..month.. year.  I alternate between being a super stoic and what feels like a big baby.  On bad days, I can be short-tempered, ignore you, or be downright mean.  I feel sorry for myself way more often than I want to.  Tonight is injection night and I don’t want to stick that needle full of antifreeze into my thigh because today I don’t have much evidence that it is working.  What it does do is make me crazy, exhausted, and sick.  I guess it’s working, because I am making it through each day.  I’m still working two jobs.  I am keeping my head above water.  My feet don’t feel broken when I step onto them each morning, but this disease is so capricious in its expression that I feel like I wake up every morning on some demented game show– What the Fuck Hurts Today?  This month, the background music has been the pain in my neck that makes me walk funny and behave like a manikin.  A few of the contestants have been the nails in the tops of my feet, my aching and useless left thumb, and my left knee.  Even my jaws hurt.  The day I saw the doctor last, must have been a good day, because I gave myself 2’s and 3’s.  I am not sure I have had that good of day since.  I find myself wanting to tell this doctor how great it’s going.  I don’t want to tell her that I feel like I am failing on Methotrexate.  I did ask, “how long until I feel good again, like, I don’t hurt?”  She said, “now come on, you’re fifty, it’s not ever going to be perfect.”  I don’t want perfect, but I do want my life back.

I don’t want my blog to be a big whine fest [especially since I am not supposed to even have wine with Mtx].  I don’t want to have to ask for an antidepressant.  She already gave me Tramadol for pain, so clearly she is pointing me in that direction.  I have always been the no-nonsense girl who finds depression so self-indulgent.  If you have time to be depressed, I’ve always thought, you don’t have enough to keep you busy.  But now, I find my boyfriend telling me I need to watch out for depression, like it might be sneaking up behind me.

And other than my sister’s good fortune today, he was the bright spot in my day–my Bean.   Tonight, he went to the drugstore and then to Wal-mart and bought me all kinds of goodies.peas ice bag tens

Icy Hot patches, disposable tens units, peas ice bag, ice bags to fill [large and small], and so much relief in a couple of bags.  So, now, I sit in the corner typing as my neck crackles, ripples, and pops in mini spasms from this tens unit, appreciating someone who took the time to take care of me today.  It makes me seriously tear up in gratitude.  ❤

Progress

Five weeks into the Methotrexate and it’s time for an update.  My rheumy doc told me that there was a strong possibility that by the time I came back to see her in 5 or 6 weeks, that I might feel no improvement, that it could take a bit longer than that since this dmard is very slow acting.  She said progress might be imperceptible and I might need other people to verify it, for instance, someone in my family saying “yeah, you are not limping as much” or “you don’t seem to be talking about your feet as much.”  So, I was not expecting miracles and was ready for no progress at the return appointment which will be in about a week and a half. Color me surprised, then, when I could feel noticeable progress at five weeks!  I’ll bullet it for brevity’s sake.

  • When I wake up in the morning, I am not walking on broken feet and limping.  In fact, some mornings, I don’t even think about my feet.
  • I don’t wince every time I pull up my pants.
  • I can button my clothing easier.
  • I can walk distances again.
  • I want to walk.
  • I am not as stiff when I rise from any period of sitting.
  • I am taking much less Ibuprofen.

Now, I still have my needs.  My neck is killing me right now.  My knees still hurt when I go up and down stairs.  My thumb joint still aches and throbs at times.  But, in all, I am really happy with my progress.

The side effects of Mtx have not been unbearable.  I have some occasional stomach upset [mild] and some mood distress [mild to mod] that is quite interesting in the way it manifests.  Most people are slain the day after their dosage [which is when gastrointestinal stuff happens if it is going to], but I have like a 3 or 4 day delay.  For instance, I would take the Mtx on Sat evening and then it would hit me by Wed of the next week.  What happens is exhaustion that is akin to swimming in Karo syrup- feeling like lifting a hand is work but I don’t have the liberty to rest since I work two jobs, so I keep going and then everything ends up making me cry.  Well, I don’t actually cry in front of anyone but Bean and I am sure he wishes I would stop it, but there you have it.  Weird, but doable.  

What has helped in addition to the Mtx is taking my supplements correctly and remembering to take my prescription Folic Acid.  Thank you, Bean, for buying me a large pill manager compartment thingy so that I can remember to take them all each day at the right times. I take Armour Thyroid, Folic Acid, B vitamins, fish oil gummies, Krill oil capsule, Curcumin, Anti-inflammatory bio caps, 100 vitamin C, & vitamin D in addition to my 1x week Mtx.

I think I will tell the doc to ramp it up a notch when I go back because I need to get in shape for summer hiking.  I’ll go from 10 to 15 or something.  I have googled this whole mood thing with the Mtx. but I would like to hear if anyone else has experienced mood alteration or that kind of strange exhaustion on this drug.

Waffles? Ok! I can do this thing [gluten-free] :)

At some time this week, I looked at a picture of a waffle and thought out loud, “I wish I could have a waffle.”  Bean heard me and promised to make me waffles this weekend.  He used his recipe but substituted gluten-free flours for the whole wheat flour and here is what we ended up with… Image

Oh, my, Lord… they were super-duper delicious.  So, this weekend, between the Ethiopian Millet bread I found at the farmer’s market and these babies, I am positive that I can do this.  I feel so much better, my eczema is nearly cleared up and my belly [who I name Betty when she puffs up] is retreating.  I know that wheat/gluten is poison to me, but I have been in such denial.  My last frontier is the donut.  When I can find one of those in gluten-free perfection, I will have reached nirvana.  For now, I am a happy girl who is happy to share this recipe as we made it this morning with you.  Feel free to play around with the flours and/or oil.

Gluten-Free Happy Saturday Waffles

1 cup Bob’s Red Mill Gluten- free flour [mixture]

1/2 cup Bob’s Red Mill Buckwheat flour

2 t baking powder

2 T honey or sweetener

1 t vanilla

1 egg

1 1/2 cups of milk or almond/coconut milk

1/2 cup oil [we used melted coconut oil and it gave the waffles a hint of delicious coconut]

mix it up and put into the waffle iron [we used a Belgian iron] :))

Side Effects- Part Deux

Happy Friday!  I am soooooo happy it is Friday, because I get to sleep in tomorrow.   This week has been, well… strange.  With trepidation I started my Methotrexate treatment last Saturday and was excited on Sunday because I had a noticeable LACK of side effects.  I had the morning gastrointestinal upset, but then the rest of the day was one of the best of the week.  I was psyched to find that I could take this med without serious side effects, but Mtx is a sneaky sneaky drug.  It’s side effects are slow and covert and by the time they catch up with you, you might not even connect them to the drug.  I’m not sure if the exhaustion I experienced this week was related to the RA or the Mtx, but it was a new thing.  It wasn’t fatigue, I’ve had that and I can push through it.  No, this was the kind of exhaustion where you are not sleepy, but you feel like just lifting your arms to wipe the dish you just washed is a major effort.  It’s like maybe your arms, legs, and head just got 75% heavier and you have to get acclimated to that.  I stood at the sink last night and literally began to cry I was so uncharacteristically exhausted.  Unbelievable.  Next morning, I was fine [after getting out of bed, that is].   That’s the other thing, waking up this week was extremely hard.

Now, in defense of the Mtx., it could have been that I worked nearly 14 hours on Monday, another 11 on Tuesday, 9 on Wednesday, and then stayed up until nearly 2 Wed night having a protracted and dramatic argument with Bean.  By Wed., I was near the edge, by Thursday… I was fried.  Clearly, I need to take more time to rest on this drug.  At the very least, I need to make it a point to get to bed on time when I am working lots of hours, but there aren’t enough hours in the day sometimes for me to finish all I need to get done.  Bean says that maybe I need to be alert for depression, since my behavior and exhaustion could be related to depression [and apparently depression goes hand in hand with RA like peanut butter and jelly], but I don’t think that’s the case, because it would be all the time and not just near the end of the day 2 or 3 days out of the week.

Water under the bridge, since things got better Friday and today.  So, here it is… time to take my Methotrexate again.  I’m having some tea and millet toast to have something on my stomach and I have had a really good Saturday.  We’ll see what week 2 of this adventure brings.

I’d love to hear what others have experienced as side effects from Mtx.  Leave a comment is you’ve taken it and let me know what you experienced.  It seems different for everyone and most report less side effects with the injectable Mtx.  I am taking pills.

It’s All Good

So, today, I ran across a link on Facebook that was one of those gifts that FB rarely offers up.  Here is the link to “30 Things to Stop Doing to Yourself:”

http://www.lifebuzz.com/just-stop/

I loved the pictures and the advice, but I could not help thinking that I would find it so much more effective if it had been stated in positive terms instead of negative [think, The Secret], so I rewrote it.  I did it for me, but I thought you might like to have a copy, too. We forget this stuff and it’s so important. I have to daily battle perfectionism, beating myself up for real and imagined failures, trying to do too much for others, and so many more of these toxic behaviors.  I forget to be grateful, I find myself complaining, and I allow others to rain on my parade.  So, here is my new more positively stated version.  You’re welcome :).

30 Things to Start Doing Now…

  1. Spend time with the right people [people who lift others and don’t tear them down, people who value your worth].
  2. Face your problems head on- that’s the only way you can solve them.
  3. Be really honest with yourself.
  4. Give priority to your own needs.   Help others, but also help yourself.  You are special, too.
  5. Be yourself, even though the world will attempt to make you someone else.  You are exactly the right you for this moment in time- celebrate that “you.”
  6. Let the past go [so you can begin the next chapter in your life.]
  7. Welcome mistakes- they teach you things.
  8. Forgive yourself for every mistake you already made and let it go.
  9. Happiness is a choice, it’s free- you can’t buy it and you won’t find it in all those things you’re buying.
  10. You make your own happiness – other people can’t give it to you and you won’t be happy anywhere or in any relationship until you’re happy inside your own skin.
  11. Be productive- too much time to think can be a bad thing and time wasted is opportunities missed.
  12. Believe you are ready- right now!  Step outside of your comfort zone and go for it!
  13. Enter relationships for the right reasons- because you have taken your time, you don’t need anything from the other person, and together you make each other better versions of yourselves.
  14. Have faith in new relationships- highlight the word “new.”  When you let someone go, let go of all the baggage they left with you.  They had a purpose in your life.  New relationships will have a different purpose. 
  15. Compete only against yourself- meet your own goals and beat your old records.  We don’t judge squirrels on their swimming and fish on their climbing.  We all have different gifts and needs.
  16. Delight in others’ good fortune.  Jealousy is poisonous.
  17. Stay positive- nobody likes to listen to constant complaining.  Feeling sorry for yourself brings you down.  Staying positive brings you up!
  18. Forgive everyone for everything.  Don’t hold onto it for even a minute–grudges hurt only you [trust me on this one].
  19. Maintain your standards of behavior even when others lower theirs.
  20. Own your behavior and decisions- you don’t owe explanations to others [some won’t believe you and others don’t care].
  21. Get off the daily grind sometimes and step back to breathe and take a look.  Sometimes it’s good to take a look at the forest instead of individual trees as they zip past.
  22. Stop and experience beauty with one or more of your senses at least once a day [then let yourself feel gratitude for the moment].
  23. Perfectionism kills productivity and creativity.  Just do it!
  24. Avoid the path of least resistance- greatness is found on other paths.
  25. Be authentic.  If everything is falling apart, you can fall apart and then put it back together again. Strong is sometimes letting others see you at your lowest.
  26. Take personal responsibility for what happens to you.  Your personal choices combined with your attitude determine your reality.  The blame game is so tiring and it discredits you.
  27. Be realistic about what you can accomplish.  When you are spread too thin, you become ineffective and/or useless to yourself and others.
  28. Worry less or not at all – it’s a big joy stealer and we need all the joy we can get.  Worry won’t change things, but your choices from today on can….
  29. Focus only on what you want to happen- that’s the SECRET.  When you dwell on negative, you get more negative.
  30. Every moment of every day you have something for which to be grateful.  Wrap yourself in gratitude, roll around in it like a happy puppy, savor it like chocolate… and your world will transform. 🙂

I took this from the article too [I know, it’s so Oprah, but it is powerful nonetheless]: 

Every single thing that has ever happened in your life is preparing you for a moment that is yet to come.