Saturday, August 17, 2013

exhaustion

one of the most crippling things about rheumatoid arthritis is actually not the pain and stiffness; it's the extreme fatigue.  it hits me throughout the day, but most consistently in the evening.  I have napped more since diagnosis than in my entire life prior to.  I can't sit down on the couch at the end of the day without nodding off, sometimes for more than an hour.  now I like a nap as much as the next guy, but it's starting to get annoying.  my muscles ache to lie down, my eye lids are constantly heavy, and I feel utterly useless.  and the nap does not clear these symptoms, but makes them worse.  I wake up feeling groggy and even more useless.  I'm exhausted.  this is a side effect of the medication, namely the Methotrexate, but it is also simply a symptom of rheumatoid arthritis.  it comes with the territory and it's going to be lifelong, just like my disease.

the more I think about this exhaustion, the more my mind is brought away from my arthritis and to other areas of my life.  the truth is, there are far more exhausting things weighing on my mind from day to day.  this fallen world provides many opportunities for pain, grief, sadness, hardships, brokenness... it's just plain exhausting.

back to the arthritis for a second.  yes, my body is physically exhausted, but the mental and emotional exhaustion trumps that.  the what-ifs, the frustration with the changes in my abilities and appearance, the different treatments and medication trials, the grief of things lost.  I'm exhausted.

but there's more, of course.  my family is hurting so deeply, my friends struggle with various trials, dreams go unrealized, plans and promises are broken, and I'm haunted by sin that seems more pervasive by the day.  I'm exhausted.  we're all exhausted.

but there is rest for the weary.  there are promises to cling to!

Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. 
Isaiah 40:30-31

For I will satisfy the weary soul, and every languishing soul I will replenish.
Jeremiah 31:25

O God, you are my God; earnestly I see you; my soul thirsts for you; my flesh faints for you, as in a dry and weary land where there is no water.  So I have looked upon you in the sanctuary, beholding your power and glory.  Because your steadfast love is better than life, my lips will praise you.  So I will bless you as long as I live; in your name I will lift up my hands.
Psalm 63:1-4

in times of weariness, I will turn my eyes to the Lord and receive His promised strength, replenishment, and love. 

Friday, August 16, 2013

serious disease progression

went to see my rheumotologist, Dr. J., this week for a regular check up.  I was feeling pretty confident, even cocky, as I walked into the office.  I have been feeling really great the past month or so, experiencing only mild morning stiffness that loosens up within minutes and then a little hand pain during the day if I've been doing a lot of writing or carrying heavy objects (grocery shopping, lifting weights, etc.) and foot pain if I push too hard at the gym.  it's all taken care of with a single Tylenol or my regular daily dose of Celebrex.  I was ready to hear Dr. J. say "we've done it.  we've stopped the progression and you're set with this medication regime for the rest of your life."  then we would high-five.

this dream appointment that I had played out in my head was actually quite naive.  I may be relatively pain free, but every single day I'm aware of the purple/red color of my larger than life knuckles, especially if I eat some processed food, which we all know I do (see the post on my paleo fail) or, like I've already mentioned before, pushed my hands or feet to their limits.  so, there was no high-fiving with Dr. J.  he made it clear that I still have "serious disease progression" and deformities in my hands and feet.  in his very to-the-point way, Dr. J. encouraged me to look at the big picture, not just the small picture - which is me getting along very well, but only because of good pain management.  just because my pain is managed does not mean that my RA is managed.  welcome back to reality, Julie.

so, there's going to be some medication changes.  I've been put on Leflunomide in addition to the Methrotrexate, both medications are meant to stunt and stop the progression of rheumatoid arthritis.  beginning October 1st I will cut my Celebrex (pain medication) in half, because it's masking the RA symptoms and we need to see if I can get along without it.  regular blood tests and x-rays will continue in order to measure the antibody levels in my blood and inflammation/deformities/etc. in my joints.  hopefully by my next date with Dr. J. there will be plenty to high-five about.

---  the very thought of that is just hilarious to me.  John can attest, Dr. J. is a straight-faced, get down to business, no time for tomfoolery kind of guy.  I have cracked some of my best nervous jokes in his presence and barely got half a chuckle.  so a high-five is probably not in our future, but a girl can dream.

I love my Dr. J. and am so grateful for his knowledge and his desire to see me live my best life in the midst of this disease.  ...even if he doesn't laugh at my jokes.

Saturday, August 10, 2013

paleo fail

the paleo journey lasted one whole day.  and I even cheated by having my regular oatmeal breakfast.  maybe I'm not strong enough or dedicated enough, but whatever it is, I just couldn't hack it.  I'm not the paleo diet type.  so on to the next thing.  or maybe just back to trying to eat healthy and manage the best I can.  hats off to all you radical diet types!  respect.

in other news, I started by internship with a local hospice agency.  one week in and I am already loving it.  I admire my supervisor and her offbeat ways.  she's pretty quirky and definitely disorganized, but her care for her clients and her respect for each of them in their particular situation is something to respect.  and that's what it's all about, right?  reaching people.  she reaches people.

I know this internship is going to stretch me in ways I'm not prepared for.  I know I'm going to learn some really important things about being a social worker.  my prayer is that God will start equipping me even now for the responsibilities I will be given and the things I will be asked to do.  I want to reach people too.

I'll leave with the verse of the day from by Bible app.  such sweet, astounding, life-shaping truth for the day, for always:
He himself bore our sins in his body on the tree, that we might die to sin and live to righteousness.  By his wounds you have been healed. || I Peter 2:24

Sunday, August 4, 2013

grumbling

read a devotional this morning on the Desiring God blog about sins that are common temptations to humans.  the devotional reflected on 1 Corinthians 10:13 which reads, "No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it."  the particular tempting sins that are being referred to in this passage are grumbling and sexual immorality.  God knows I love to grumble.  I grumble about being tired, my health, homework, money, to-do lists, living so far from my family, the hot weather... the list goes on and on.  

it is certainly tempting to me to grumble and complain!  this particular sin shows my false assumption that this world is my little kingdom and everything should go my way.  it's all about me and mine.  what I want, what I think should happen, what I deserve.  but the reality is that this world belongs to my God.  and thank Him for that.  He is in control and He is sovereign and He is faithful.  how quickly I forget


with each temptation is a promise.  if you turn to God's Holy Word, you will read loads of amazing and jaw-dropping promises.  for example, when I am tempted to grumble and complain, I must remember these promises: "Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths." (Proverbs 3:5-6).  "And my God will supply every need of yours according to his riches in glory in Christ Jesus." (Philippians 4:19).


when all I want to do is grumble, my focus and attention is on me, not on the almighty God who cares for me and promises to direct my paths and supply my every need.  He is truly an amazing Father.

Thursday, August 1, 2013

sometimes I just don't feel like it

my latest battle has been with exercise.  well, it's been going on for a while, if I'm going to be honest.  I used to be quite the gym rat and run 15+ miles a week.  then my feet started hurting, which was blamed on bunions, and then the dreaded diagnosis, and then all the meds, and then the fatigue, and then the crankiness and general displeasure with having joints that are purple and double their normal size... oh the excuses and blows to my ego and sense of well being are too many to list.  it goes without saying, I can throw myself quite the pity party.  I'd send invitations, but I'm too tired and cranky.

anyways, I've gained the weight and the bad attitude that everyone warns can come with an RA diagnosis.  there are days where I'm motivated to beat the 'tude and days when I just stare at my gym clothes from my comfy perch on the couch.  I have an internal dialogue about 'to work out or not to work out' about a thousand times a day.  it's anybody's guess who will win the argument.

it's easy to say "I have RA, I can't work out," but it's harder to admit that "I have RA and it pisses me off and I'm going to use it as an excuse to be lazy."  but that's the honest truth sometimes and here I am, owning it.

I need a new outlook, a new mantra, a new motivation.  health.  it's my health, not my jean size, that matters.  I may be hurting, but I'm also given hours and sometimes entire days where I'm feeling pretty normal.  I need to seize those pain-free opportunities and choose happiness and health over pity and potato chips.

but sometimes I just don't feel like it.  working on it, though.