Saturday, December 18, 2010

It's not pride after all

First of all, there's nothing on T.V. at 3:00 a.m. Ever.

After the last 7 days I have come to the realization that pride is only a fraction of my problem when it comes to my RA and fibromyalgia. The bigger problem I'm facing is denial. For months now I have thought that it was pride that was my struggle. Not wanting to ask for help or not wanting people to know how badly the pain was affecting me. The bigger picture has shown me this week that my bigger issue is denial. Denial that these diseases, both of them, will progress. Denial that there is a possibility that the pain could get worse instead of better. Denial that my body and life is changing around me regardless of whether I want it to or not.

I like my rheumatologist. Actually I like the physician's assistant that works with my rheumatologist. Yes, the doctor is fine, too, but I really don't mind at all seeing his PA. I am blessed that neither one of them has made me feel stupid or insignificant because of my pain. They have always considered my feelings on my pain 100% valid. That kind of treatment is rare. Question is, if I don't have a problem seeing them, why do I put it off for so long? Up until 2 days ago I didn't realize how large my medical record had gotten at my rheumatologist's office. I worked in family practice for years and large charts like that were reserved for the elderly and....oh wait....yeah, the chronically ill.

"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." ~Romans 5:3-5

It's the step between character and hope where I've stumbled. Between character and hope there is a place I am stuck in called denial. It's not denial that I am sick. It's a denial that it's going to get worse. I have fully accepted that I have RA, and I have fully accepted that I have fibromyalgia. I am 110% positive and have faith that at any time that God has all the power to reach down and heal everything. I understand and have accepted that he has me here and has allowed my suffering for reasons that I cannot yet see, but are to the benefit and growth of His kingdom and to completely glorify Him. However, up until about 2 days ago, I had not even begun to consider that I was going to get WORSE. I didn't know that the pain would spread and be so devestating. I had persevered up until this point. I had pushed through. I had always taken care of things. Oh, sometimes I needed a day to recuperate, but I was always ready to face a new day in the morning. So as day 2 passed and then day 3...I got up and went on day 4. Ready or not, here I come.

So, with a doctor's order to take day 5 and two trigger point injections later I am fully aware that there will be disease progression. More painful than the awareness is the fact that with that progression my life will change. I will change. I am no longer and will never again be a "normal" 32 year old mother of 2 boys, wife, analyst, jewelry lady. Don't get me wrong....I am still all of those things, but not like everyone else.

The pain changes everything. Somehow I have to get back the hope and lay everything else down at the cross.

Tuesday, December 14, 2010

I think I can......I think I can......I think I can......

The flare up started on Sunday...3 days ago. Since that time, I have only managed the energy to shower once and fix dinner once. I have managed to do some laundry off and on just because moving provides some relief to begin with, but I quickly get fatigued and the pain increases the longer I'm on my feet. I've been doing the exercises that I learned from OT, which also provides some very short term relief. I've never had pain in my back like this, so it's left me baffled and somewhat hopeless to say the very least.

"Keep watch and pray, so that you will not give in to temptation. For the spirit is willing, but the body is weak.”~Mark 14:38

The body is weak. I have heard the latter part of this verse in my head over and over the past day or so. The spirit is willing, but the body is weak. There is great temptation to give in to the disease; to lay helplessly for days on end while fibromyalgia has it's way with me and RA rears it's ugly head. My spirit is crucial to my survival and revival during and after a flare up. My spirit is willing...pushing me, keeping me going, even if my body is incredibly weak, painful, and completely spent.

So, I gave in and called my rheumatologist. As I wait for that return call, I will continue to rest and do laundry (with 3 boys in the house, it's never ending), until I get some additional medical direction to help point my way to recovery. Being laid up by disease isn't something that I have ever wanted to succumb to.

But here I am.

Wednesday, December 8, 2010

I'm sorry....can I verify your credentials, please?

A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy. ~Lauren Bacall

I have a habit of trying to "figure out" my diseases and which one I'm battling at any given time. Is it the fibromyalgia bothering me or the rheumatoid arthritis flaring up? Is it the snow moving in? Did I go up and down the stairs of our split level home one too many times? Or is it (gasp) disease progression? The last thing I want is someone telling me what they think it is or especially what they think it isn't.

I saw this t-shirt and at the time I chuckled because I knew it was a true statement and I had a few run-ins with folks who compared RA to the pain in their hand or an old sports injury in their knee. Now, I don't even know where to begin about how it makes me feel. Just as thousands of other RA and fibromyalgia sufferers, I have had physicians blow off my pain or just change my medication and hope for the best. I had decided to try a "holistic" approach when I was first diagnosed with fibromyalgia. That doctor looked me dead in the eye and told me that fibromyalgia wasn't real. Hmmmpf.

However, the most painful blows for me are not from the medical community. They're from people I come into contact with on a regular basis. Most of them too prideful to educate themselves on the reality of 1.) Who I am. 2.)The significance of the disease that they are so quick to be experts about. Co-workers, church family, neighbors, and My husband told me once that there are times when it's difficult even for him to believe that there is something wrong or that it's really as bad as I say it is simply because I look okay. Do not be mistaken, I have a wonderfully supportive husband who helps me a great deal with many things around the house and when we're out and about. It's the not looking sick that people can't get past.

But You Don't Look creator Christine Miserandino gives a wonderful visual in The Spoon Theory. I have even printed it off and given it to friends and family members as well as posting it on facebook or emailing it to friends just hoping that they'll read it and grasp some sort of understanding of chronic illness. Unfortunately, the majority of my friends have failed to respond to the article (which is beautifully written, by the way) or be bold enough to have a conversation with me about it.

These diseases are real. The pain is intensely real. My distinct bad attitude towards "normal" illnesses is mutating into something very snarky, but that's a whole new topic for a whole other day. And if tomorrow was anything like today, we'll be discussing it tomorrow.