all that comes to mind is "update"

I have entered some kind of a void phase. When it comes to how I'm doing, I have had a lot of things in mind, but every time it comes to actually speaking on it, it is just somewhat void. I can't think of anything that accurately explains what I am trying to say. Or by the time I get ready to type or talk or explain, I get exhausted at the thought of it and decide it is not worth it at that moment. Perhaps this is part of the process of acceptance. I am sure it is, seems like a normal step anyway. I envision stepping out of this phase and eventually getting to that "thriving" phase despite the rheumatoid arthritis. It is a process I know. Days like today make that seem more challenging; I had to move my mouse to the left side of the keyboard again. My right wrist and elbow are screaming at me.  

The Humira is working, it gives me 2-3 really good days per injection so far.  And I got my new swimsuit in the mail (massively on sale for end of summer!), so things are looking up despite my right arm in general. And, I am officially 31!  Hooray to be DONE with the medical onslaught of 30.  A lot of great things happened last year, like my first juried art show acceptance, lots of great family time with my brother & fam, lots of ministry speaking opportunities... all in all, a linear timeline is the best way to go. I love the memories, but would never want to repeat this last year :)

grief

If you know me well, you know that I am not one to shy away from my "darker" expressions.  Darker like intense grief emoted in a healthy way, of course. That is the difference between me today and me 8 yrs ago.  8 yrs ago I didn't have the maturity to deal with the intensity of pain, grief, sorrow, loss, betrayal.  It felt like my life situations were too "adult" for my 22 yr old self. God made me as a pure ball of joy, mixed in with quite a bit of sunshine :)   I was not made for this current world and the intensity of how evil it can be, how broken it can be.  I am forever thankful that God walked me through that growing up time to handle it to where I am today.   Which, brings me to the topic of grief.... grieving is so healthy, even if it raises fears in ppl watching the person grieving.  I have a wide array of emotions about this current physical struggle with rheumatoid arthritis.  Can I grieve the diagnosis, the brokenness of my physical body, in a healthy and beneficial way?  Absolutely yes. That is what I am endeavoring to do right now.  I want to, Have to, express the grief or else I feel stuffed, confined, very discontent and not heard or understood.  I have a huge desire to be heard and understood, for a litany of reasons, but needless to say it is my #2 after the need for love.
            So how am I going to express, "emote"  (someone is the daughter of a counselor ;)  ) this grief you ask?  Tonight it is painting my nails black. Before you roll your eyes, realize how cathartic something like painting nails or dying hair can be. It is a physical expression of internal feelings that brings no physical harm nor is permanent... excellent!  Think back to 100s of years ago. When someone died, the family, esp the wife, wore black. Not just to the funeral, for days and weeks until in some situations her father told her it was time to put mourning clothes away.   That is deep expression of a painful loss... it is hard to pretend all is well when you are wearing all black.  It is hard for others to gloss over life when they see you in all black. Why are we so afraid of grief today?
             I do not want to be in so much pain every day. I do not want to have needed and have had 3 joint surgeries in less than a year, still needing another but dealing with daily pain so I can live somewhat "normally" for a while.  I do not want to worry about infections every time someone coughs around me because I am injecting myself with a substance that kills my immune system.  Do I have hope in God? YES.  Do I believe in His sovereignty, His love, His light, His healing abilities?  YES YES YES YES.  Do I, as the human God made me, need to grieve this pain and loss of some life ability?  Yes.  What would Jesus do? Cry.  He cried, appropriately.
           So my nails are black. And I am walking through this storm with God... more like He is shielding me, with His arms around me as this "unfair, unfortunate, devastating and undesired" hurricane continues to pound against us.  He could command it to cease the instant he gave the thought, but.... I want faith that is beyond the disciples in the boat with the storm. I guess God knows that!

The simple life

My calendar used to be so full, I would schedule down time in blocks as an activity. I would go crazy otherwise. I love one on one time, and I love group hang out time. I also hate missing out on things. I remember thinking, "Meagan, this is crazy, you are exhausted, why are you pushing so hard and over committing?!"  Then the fear of there being fun out in the world that I could be a part of, and I am missing out would creep in.  That this time might be THE time something exceptional happens, and I would have missed it!  That this time could be the time I meet Mr. Right, or the next best amazing thing to change my life.  Maybe even, that this crazy busy schedule will work to keep me so distracted, my reality actually will magically be different.  I remember a few times a year and a half ago telling myself point blank- sleep is for the dead.   Then I hit burn out.  I crashed HARD. Right before my foot surgery, I pulled myself out of every activity and resigned from all positions except volunteering to be a door greeter at church.  I went from 100mph to about 15.   Shortly after was the foot surgery, which required me to be out of things functionally.  I thought, wow God, look at how amazing your timing is!  I thought I would get a good break, "rest up", and be ready to hit it 100mph again as soon as the foot healed.

That was then.   Fast forward to now. 

Life is so different now! Its not better or worse, it fits how I feel physically so in that way it is just right. For the first time I think in my life after 5th grade, I am not in any leadership role, I am not on any committee, I am not a regular volunteer of anything.   And, Praise the Lord! I don't have the energy to keep up. I have about 2 hours of activity (any activity) in me a weekend day, then I need a 2 hour nap, and to rest the rest of the day.  Weeknight evenings, I have to push really hard to make myself do anything. I never feel "up to it", I am not sure I ever will after working a full day, until I go into RA remission.  But even so, there are a few things I want to do, and I think coming at it from the KISS perspective (urban dictionary that acronym if you don't know it), it doesn't have to be overwhelming. Right now that is the Wed night Ruth Bible study class.  Last week my joints were screaming at me, and I had to go right to bed after work. I am hoping, though, that is not my norm.  Going out on one weeknight during the week doesn't seem to be too much. And, I kinda like the simple life. Very simple.  My hobbies are IMAGO art (once a month for 2 hours) and this Ruth class. That's it, but I like it. It leaves room for the random once in a while get together, AND, I feel like I am able to get into both and do both well. 

The days of late night dinners, movies at 9 or 10pm sun nights, all day outings on Saturdays, concerts, Miller Outdoor Sunday activities, ministry work on weekends, sports seasons, all might be something that, when I reach remission, I could do. Today, I am trying to just go to my singles Bible study class tonight. That is all, because I went grocery shopping earlier, and needed a 2 hour nap to recover.  :)   It is slightly ridiculous, but, I did have a good run at trying to do every single thing I possibly could at one time back in the day. Now my no muscle must be strong, and the yes to come after careful consideration.

gluten free is not for me

I have no idea why, but when I have baked items made from gluten free flour (tapioca, almond, gluten free wheat) I get the worst migraine! I don't know if there is a filler generally used that I'm allergic to, or what but I am not doing the gluten free flour baking stuff.  I made the sugar free tart things w fruit jam, and in spite of a very odd "clinging" or "thick stringing" the cookie had when I broke one apart, it tasted ok.  Then came on the same migraine and stomach ache and general oh my word I want to cease right now feeling.  Happened to me also the last time I tried baked goods I made from gluten free flour type items. (that time i think was tapioca flour).  Anyway, not for me I guess.  But just because I am not doing gluten free doesn't mean I won't be changing the diet drastically of course. I am still going to eat a diet that is of whole grains rather than white flour, and not have all that much of it. yay protein, fruit and veggies. And no refined sugar, refined sugar seems to turn to poison when I eat it! an addictive poison!

Anyway, I came up with a very good non-inflammatory meal plan with enough variety to repeat it each day for a while. So I will try it out and see how it goes!

Today has been one of the more difficult days, pain wise, but even more challenging is the fatigue! oh my word I am SO tired. I wouldn't be surprised at all if someone came along and diagnosed narcolepsy! I could sleep anywhere anytime. except in the middle of the night, of course ;) that would be too easy  :)     Tomorrow I give myself the second Humira injection!  They said 2-4 weeks to work, come on 2 weeks!

time to nap now

New diet

Just got back from Whole Foods. In my cart was almond flour and gluten free wheat flour.  I have no idea if I am wasting my money or not, but I have decided to get on the massive bandwagon and try the whole gluten free concept. At least in what I bake at home!  I am going to try a new recipe with one of those flours, same recipe as sugar cookies but without sugar (and without any other type of sweetener), and with a dab of all fruit jam in the middle :)   sounds good to me!

I think its too early to know what triggers more RA pain verse what keeps it somewhat at bay.  Trial and error! I have already cut refined sugar by about 80% of what I used to have. And I have taken out almost all artificial sweeteners... it hasn't been as hard as I remember it being when I went sugar free for a few year a while back. Maybe its all about the motivation! Pain is a big one.  So is this crazy all encompassing fatigue.  I took a total of 5 hours in naps today ;) haha   Praise God that I have a life situation where I can have weekends off!  I am also doing the whole walk a mile thing at work every day (in air conditioning!). Not doing it on weekends. I might melt in the sun. I want to start stretching more, and once the humira kicks in a bit more, I want to start hand weights again.

BTW! Did you know whole foods sells zero calorie sodas without artificial sugar, they use Stevia!  Crazy brilliant.

"Just because" is a good reason

I had a rough night last night, and was super tired, so I decided that I needed to take a vacation day today. I wasn't feeling ill last night, just I the normal joint pain and fatigue, but I was getting overwhelmed with the responsibility, reality and fears of RA. I decided to voice all my fears and frustrations in an email to a friend. One thing I have been noticing about me is that I am truly very joyful and optimistic, but in that, my emotions get dismissed that need to be processed!  So, I wrote my fears without adding explanations or conditions to each after, like how I know God says other wise, or how I know its not logical, or how I know I can't predict the future.  All true things, and, I still feel this way, so I just wrote.

How flippin cathartic.  I highly suggest writing all your fears, frustrations, angers, and not allow yourself to qualify them right after. Just sit in it to feel it and process through it!  

Anyway. So, just because I wanted a break in general, I took today off. I decided what I needed after a night like last night was chocolate chip waffles, lots of sleep, and a manicure.  I made chocolate chip waffles (and enjoyed every bit of the "bad for joint inflammation" sugar and refined flour in them), slept about 4 hours worth of naps, and got my nails re-shallacked.

I rounded out tonight with going to see a dear friend teach a new 7 week class on Ruth. Love love love.

I feel much better.  My world really isn't ending :)   Lots of unknowns, but I know its not ending.

anger management

I'm starting to get mad at little things. 

One being how much steroids can make a person freaking sweat! It is almost super-human how much I can sweat in a chilled 65 degree store.  I think I might have scared the Barnes and Noble worker today.  Of course I was in the self help-medical isle, shouldn't have been too much of a shocker.

I tried to get my mini spa set up in my room. I took the table and foot stool out of the boxes, and did the 1-2 step assembly, and then needed a nap.   I have all these boxes that stuff has come in, small stuff mailed in big cardboard boxes.  I can't valet waste them.  I am going to offer an exchange to my roommate, I'll buy her lunch if she will take it all to the dumpster.  

Last week I went back to the singles Bible study I was in before my first foot surgery 10.5 months ago.  I have been looking forward to some social activities coming up... Paradise pier in Galveston next weekend, and antique shopping in Old Town Spring in 3 weeks. After needing a nap putting 12 screws into pre-drilled holes this afternoon, I am seriously questioning my ability to last at both of those outings.  What if I get so tired I can't drive back without sleeping a few hours in my car first? Do I even have the guts to become a loiterer? I'm afraid that if I carpool, I will have no place to nap if it hits me and I need to sleep right then. There is always a picnic table....

There is a bruise on my thigh the circumference of my thumb. Its from the humira injection I gave myself on thursday afternoon.  Still blue and purple.  It doesn't really hurt, it just annoys me that its there. 

I've said this before, and it applies again... I know it is dangerous to pray for patience, but it is even more dangerous for me to not have any right now.