Monday, October 26, 2009
What is fatigue in rheumatoid arthritis?
It's easier for people to think of joints as causing problems than to think of fatigue and the other intangible things that give RA patients trouble. That's because fatigue is not something you can put your finger on. It's a sense that you're not feeling up to par, that you're slowing down. Nothing else may be wrong that's obvious to you or your physician. You may or may not have joint pain or stiffness at that moment. But the fatigue is there.
Patients sometimes compare the fatigue of RA to recuperating from the flu - as if they're trying to keep up and can't do it. But that's not quite all of it. There's something more that's hard to define. The fatigue of having a systemic rheumatic disease is unique and can be very difficult for patients and those around them.
When people ask, "How are you?" and you say, "I'm fatigued," they ask, "What do you mean?" Well, it's not just being tired or feeling that you want to sit still. It's something deep inside that's slowing you down - maybe slowing your thinking or initiative. It's something telling you that you don't feel quite right.
Can RA fatigue be measured?
So far, no. It's an intangible symptom that, despite great effort, physicians have been unable to define nor measure. Nor can we determine its impact, which varies from patient to patient - and varies in its impact on any one patient over time. But enough people have complained about fatigue over time that we know - and you know - it's real.
Why is fatigue so difficult to cope with?
It might be easier to have a disabling condition that happens and then is stable; it stays the same, and you develop coping mechanisms to deal with it because you know what to expect and people around you know what to expect.
But that's not the way RA works. Big fluctuations occur randomly. One day you feel fantastic and can do everything you and others expect of you. The next day you can't even get out of bed. And every time that happens, you have to reestablish your coping mechanisms - both functional (who will prepare the meals, take care of the family, etc.) and psychological (how do I get through this with my feelings intact).
It's often easier to get through those fluctuations when you can pinpoint the problem - "These knees are swollen and painful" - than when the problem is as intangible as fatigue, which can occur in the absence of physical symptoms. Fatigue can be "hard to believe," especially when you've been feeling so well just before it hits. So, all too often, because you can't "see" it, you belittle fatigue. "Is it that I did too much yesterday or didn't get enough sleep last night, or is it my disease acting up again? And if it is my disease, do I really want to acknowledge that? Can I ignore it, push it aside and just keep going?" And that's exactly what you sometimes do - push it aside in order to feel like the person you were before you got this disease. Acknowledging the fatigue, and responding to this intangible sign of disease, is difficult - but essential.
(you can read more here)
all in all, i'm feeling very overwhelmed these days. i am trying to stay positive, but it's very hard to PLAN or COMMIT to even small things in life when you don't know how you will be feeling hour to hour. i have been experiencing extreme fatigue (also resulting in forgetfulness) for over a year now and i can't figure out how to manage it!
for a person like myself who is used to being independent and on top of things, and able to put in more than my "share" of responsibility and work, it wears on me that i feel like i let people down by not having any energy, not being able to help because i have to get in bed by 9:00 or forgetting to do big and small things that i told someone i would do! i am constantly feeling like i got 50 years older overnight. i feel lazy, unproductive and sometimes even unfriendly! it's just not a good feeling.
all of that to say, keep me in your prayers when you think of it! but it could be worse, most definitely, and i realize that. i am so thankful that i am able (for the most part) to function normally, keep a job, have wonderful friends and relationships and do really cool things! i am just learning how to combine these new developments with my lifestyle.
thanks in advance :)
Tuesday, September 01, 2009
Monday, June 29, 2009
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Monday, June 22, 2009
i know i am extrapalating the evidence here, but i have to think it's more general than specific unfortunately...
i left messages for my doctor twice on thursday from the beach because i'm having skin reactions to the sun, and let them know that i had stopped my medicine and needed a new prescription asap. my mom said it was probably from my medication. we got online wednesday night and google told me that you can have skin discoloration side effects from taking anti-inflamatory drugs.
i heard nothing from the 'ol doc on thursday or friday, so i called back at lunch on friday to find out that they closed at noon. happy weekend with no medication!
(no medicine + damaged 85-year-old bones = 85-year-old michelle)
the nurse called back this morning with no explanation or apology for not returning my call, and told me they had called in a pain medication for me. an analgesic medication...and that the doctor said "it might make you a little loopy, just fyi."
i asked her about 10 other relevant questions that she had no answer to, or to which she said things like "yeah i think so...yeah he probably meant this or that...well, just try it and see what happens and if you can't take it, we'll figure something else out."
i spend more on healthcare every year than on anything else i've ever paid for in my life (besides taxes, but that's a blog for another day).
my family has probably paid for countless doctor's houses, beach houses, lakehouses, their kid's college education, etc. because i am constantly in and out of doctors and specialist's offices, getting charged left and right for "an opinion," be it 1st or 2nd or 10th. not to mention the RIDICULOUS costs of surgery. (also another blog)
it is ridiculous that a nurse can't call me back when i'm calling from my only summer vacation because i need medication.
it's also ridiculous that a doctor can't pick up the phone and spend 10 minutes paying attention to my needs.
and it's ridiculous that i constantly feel like the only way to get ANY attention (and still, very little) is to actually make an appointment to get face time, which i refuse to do since i will then be charged for a complete doctor's visit because i took 10 minutes of his time, while he took an hour and a half of mine while i (im)patiently waited and read the may 2008 issue of people magazine.
i think i am just sick of spending time and energy (and money) on this because there are SO many other things i would rather be doing!
and i just needed to vent. my apologies.
Tuesday, June 09, 2009
Friday, August 14, 2009
7:00pm - 10:00pm
Steele Creek Church of Charlotte
1929 W. Arrowood Road
Wednesday, May 27, 2009
this is my best friend from middle school! when she requested my friendship on facebook last year, i almost denied it because that wasn't her name when we used to do spice girl videos & buy glitter eye shadow at carolina place but luckily i clicked on her picture! i am so proud of her...she always wanted to be a singer so she moved out to L.A. and she is making it!
p.s. - i give m(on)i(c)a all the credit for my love of fiona apple & awesome girl music overall. :)
congrats to my friend across the country! buy her music! her new cd will be coming out soon too!
Thursday, May 07, 2009
all that to say, the "one day at a time" concept is something i constantly have to work on (as far as not being overwhelmed is concerned). don't get me wrong, i realize there is a great purpose to having a long-term vision and focus, but for me personally, i want to be able to grasp the truths and harsh realities of the world and be able to move forward with a plan without wasting time being frozen by hurt/worry/upset. the point is, when you have faith in a God that knows the deal, is with you everyday and has perfect timing, you are able to take things one day at a time with good faith (and without scrambling to MAKE things happen).
that being said, there are so many incredible things happening in my life lately...i have truly been overwhelmed to tears a number of times realizing how often i've tried to take the lead in this waltz with the Lord, and end up tripping over my own feet, when all He wants is for me to follow His lead and listen for/feel His guidance and follow.
i was telling someone the other day that it's surreal and very humbling when you come to those moments in your life where it is (again) confirmed that God is sovereign and He has a plan for your life and that there were no "pointless" moments that He did not at least incorporate into that plan, even if they weren't the preferred route. for the last few years of my life, i've felt often that i am spinning my wheels and that things were happening that made absolutely no sense in the grand scheme of things (as if i know what that means). i don't think God faults us for our thinking because we are, after all, human but i do think He wants us to allow it to be transformed. He does this slowly and progressively with these moments where He says quietly or very loudly "I have never forgotten about you...it's just not possible...you're my kid!"
michelle's updates/highlights (ha!):
- i am more than halfway through my "welcome" class at lake forest to become a ministry partner (a.k.a. member) and it has been such an awesome class - i am incredibly impressed with the foundations and purpose of the church, as well as the heart of the staff members i've heard from thus far and i am so excited about getting more involved and building relationships there. the first two weeks, mike talked about core concepts of Christianity & "who we are to God" and it was such a good reminder of simple Biblical truths that you overanalyze and make complicated when you've grown up in the church.
- i have also had the opportunity very recently to get involved with SIM, a missions organization with the US headquarters here in charlotte. it honestly makes me antsy to get my hands in there full force and work with them on all the different projects they have going on, so i am working on being patient! :) the people there are great and i am so looking forward to seeing what develops of that relationship!
- charlotteONE is one of the most inspiring, energetic organizations i've ever been a part of and i'm thankful i got into it this year - randomly enough, on the first week of my class at lake forest, dave hickman walked in the door (he's the ED of C1), so of course i intro'd myself to him and since then, have had the opportunity come up to work with the leadership team as the connections team lead. i am SO excited about the opportunity - it was an immediate "yes" reaction from me because of how much i believe this ministry is doing in the city of charlotte. if you live in charlotte & you haven't tried C1 yet, please let me know if you want to! i'll meet you outside on the steps! ;)
- i saw amos lee on tuesday. he was absolutely amaaaazing! beautiful pipes. (really, did i just say that?)
- my little girl is graduating on saturday!!!! haha....the one & only justine is graduating on saturday from campbell & i'm so every excited she has saved a "family ticket" for me to attend her graduation. she was a freshman during my senior year at campbell and i have seen her grow up, mature & come to know the Lord in a BIG way since then. happy graduation little mama!
- oh, if you haven't seen this video, get on it! (i hope it's as funny to you as it was to me...i actually cry-laughed.) "kittens inspired by kittens"
- i get to go to raleigh tomorrow and spend some time with me-linda!
more things to talk about soon but for now, that is all! oh, i've also added the link to donald miller's blog on my "amigos" column on the right - i debated on placement for the link, but i'm fairly certain that if i met donald miller, we would want to be friends, so i'm gonna go ahead and graduate him to "amigo" status!
be Thou my Wisdom & Thou my true Word; i ever with Thee, Thou with me, Lord;
Thou my great Father & i Thy true son; Thou in me dwelling, and i with Thee one.