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. 

Reality bites

The honeymoon phase of getting a diagnosis is ending. Tonight I have had my first real cry over this new aspect of my life.  I don't know what I had expected, that maybe I would have the diagnosis of RA but the pain would of course stop, my life wouldn't be all that impacted, not enough to inconvenience me, and I would press on just adding one more health acronym to my list.  Why do we always assume we are the exception to the rule? Its like a twisted Pollyanna way of looking at life.  Maybe its what we have to do to stay emotionally together until we instinctively somehow know we are able to now deal with it, with the reality of the situation.

My realization that life will not just include a few more naps started Friday night.    I went to dinner with my brother and fam for his birthday, and though tired, was fine most of the night. I picked up my 1 year old nephew a few times, and played with my 3 year old niece some.  After I got home and went to bed, I woke up multiple times in the middle of night with my shoulders and elbows of both arms very stiff.  This morning I woke up and went to lunch with a wonderful friend who also has struggled with an auto-immune disease. Talking to her did not bring up anything surprising, but every once in a while I would pause and the words that we were actually saying would sink in. The ways we both have experienced pain and tiredness, and the same rheumatologist my friend had recommended. This isn't a game. It isn't a movie, or a book.  This is real life. I can't walk away and say 'ok, its been fun seeing what life was like with rheumatoid arthritis but i am tired of it now, lets move on to something new.'      

Old habits must die hard bc even though very tired, I decided after lunch that a shopping trip to Michaels was a good idea. Once there, I decided to get a cart even though I was going in for one thing, never mind that I literally could not push it with my right arm! I shopped for about an hour, got what I normally would want to get (ie 7 heavy candles on clearance, 3 large baskets on sale, 7 glass jars for an idea I have, 4 new canvases in a pack, a backless frame 50% off for the art show in March, and candy.)   I was regretting being in the store and not home in bed where I knew I needed to be, and by the end I was struggling!  I forgot that I have to get the heavy stuff INTO my car.  I forgot that I then have to get it INTO my apartment!  I didn't make it that far, it is still sitting in my car. I better not park outside without a cover or my candles will be a ball of goo.

All this, and I was ready to just. go. home.   And then I remembered my prescription that I needed to get at Kroger, plus the essentials of milk and bread.  I was so frustrated, tired, hot, in pain, and had to still run this dumb errand. By the time I got home for real, I put the groceries away and fell asleep for about 3 hours.
Tonight I have felt this now typical bleh malaise that doesn't seem to lift but for short amounts of times here and there. I didn't have a bad night, just watching tv mostly, but as soon as I got up to go to bed it felt like the weight of all the small realizations today piled on top of each other and added up to a ton of bricks. I started crying out of frustration rather than physical pain. I am actually going to have life changes because of this.  I might have a day where I am home alone and can't do something.  Do I make friends with my neighbors now so I can go over there for help if needed? (I am typical big city apartment tenant, I have no clue who any of my neighbors are).  I know to take it easy, and in the future have to stay home at times and not go out. How will I get my people fix? I don't have a husband to give me automatic community (assuming we would have a healthy relationship).

This is so vain, I admit. I have this rheumatoid nodule on the top of my hand. It is quite small to everyone but me, I'm sure. I don't know if those go away. My wrist looks like I banged it, but I didn't, it just has a bruise color that doesn't fade and under it hurts like it is on fire. What if I get those RA hands that the sweet elderly people have before I am out of my 30s?  What if more than just my feet and jaw joints really do get degraded and deformed?

I realize I could what if all day.  And I know it is not helpful for anything.  But I'm a girl, of course I have these thoughts, and I want to stop ignoring them.  So, in processing the very normal fears that come up- here is what I will do if those challenges come.  If I get deformed hands, I will rock them. Crooked fingers and swollen knuckles doesn't mean I can't get my nails done, or moisturize.     If I need more surgeries, I will take them one surgery at a time (and we are so starting with my left foot as soon as I can stand to have a broken foot again).  I will practice writing with my left hand so it can be seamless to keep working if my right hand continues this way. If I need to stay in bed but need a ppl fix, I do own a cell phone.  When I need to take a break from picking up my niece and nephew, I will sit on the ground and let them climb all over me.  Life doesn't seem quite so depressing right now.