Light at the end of the tunnel…

The last time I posted something about my health, I kind of put it all out there, as I usually do when I open my mouth.

I got tons of kind responses.  I have read them and they have been my sunshine on cloudy days.

I also got one very unkind response that rocked my little world more than I want to admit.  Sticks and stones…right?

So I took a little break from posting anything about myself on Facebook or the internet until I could clear some “friends” (loosely used term on Facebook) from my page.

Despite the pain it inflicted to have someone think I would create all of this health drama for attention, I have focused on the positive and the fact that when (not if) I get better, I will make sure to be a light to people who feel like they are in darkness or a storm.  I believe God can use my journey through this as a testimony for others.

Anyway, several have asked and this is a simple way to get the word out about what is going on. 
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In January I finally got to see the rheumatologist that I was referred to in November.  She sat with Richey and I for an hour and 20 minutes; steady typing out every word I said and every word and suggestion she said.  It was the most intense conversation any doctor has ever had with me face to face.  Even after all those years with my mother being sick, there has never been a doctor stay in a room with us for that amount of time.   

 

She ordered labs to be done and gave me a couple of ideas of what she thought could be happening in my pathetically fatigued and hurting body. We scheduled x-rays of almost every joint in my body.
12 tubes of blood and 24 x-rays over the next two days, I waited patiently for the office to call and tell me what they found. Much to my dismay, it took a couple of weeks to get a response from the labs and even then it was brief. But what was in my bloodwork actually matched what she discussed with me in the office.
Most everything is normal which is great, but I was positive with some antigen that shows I have an auto immune disorder with an over active immune system.
In essence, my body thinks I’m sick all the time and produces too many of the protein cells that are made to “fight” for you when you are sick, which causes the fatigue and eventually over time, the arthritis in the joints from the excess cells. Because I have psoriasis and have since I was a kid, she has diagnosed it as psoriatic arthritis, which is very similar and treated the same as rheumatoid arthritis. It does not ever go away, but can be treated (quiet aggressively) with medications that stop the progress or at least vastly slow it down.

So here is the current plan. I have been on a steroid since I saw her in January. Those are only temporary relief since they are too dangerous to take on a long term basis. Because they GREATLY reduce the inflammation which causes the constant aches and pains, I was able to wean myself off the daily narcotics (woohoo). In the meantime, she has put me on methotrexate on a low dose. It’s a mean mean side effect drug, but after a year and half of not being functional, the willingness to accept the side effects are expanding. I take it once a week and a daily dose of vitamin D and folic acid to off set the things its killing off in my body that I actually still need. It’s job is to kill off the over production of the cells that are making me sick. In that process, similar to chemo when used in higher doses, it makes my body physically ill for a couple of days after taking it.
She swears that over time, (12 weeks) my body will adjust to this new life long drug and even out a little.
Therefore, we had to pick a day of the week for me to be sick, which you wouldn’t think is hard after all this time, but planning a sick day isn’t fun at all. We chose to take the weekly dose on Saturday nights and Sundays are usually totally in bed or over the toilet with lingering side effects on Monday and a little Tuesday. We are finding that Wednesday through Saturday are showing great improvements, so all my plans are starting to form around later in the week. The doctor says it will take months for me to feel really good again and the I have to have my wimpy liver checked every two weeks since it started out sluggish to begin with and this medicine is super harsh on it. ALL that to say, WE are super excited to see some light at the end of the tunnel.

I said “we” chose to take the medicine because WE are going through this as a family. When someone is chronically ill in the family, it effects everyone. My husband is truly my hero and he takes care of EVERY thing on those days I lay in bed or the bathroom floor. He takes care of his kids, my kids, our cats, and the house and laundry on the weekends. He has done the most romantic things like buying me a portable air conditioner, turning the mattress pad heater on when I am getting ready to lay down, making coffee when I am ready to get up (and he doesn’t even drink coffee), making (or picking up) meals for the kids, and cleaning and doing homework with kids.
My rock. My God given, perfectly timed ROCK. He doesn’t even admit he is tired as he lays his head back on the couch early in the evenings to “rest” his eyes.
My kids have shown their exhaustion at times, but are always grateful for things I do for them and seem to be a little more appreciate of the “good” days that are beginning to show. They have all been troopers.
My friends have done and said the most overwhelmingly kind things over the last months, I don’t even know how or when I could ever repay them.
I am often reminded through my Bible readings that God still has his hand on me and my family and that his plan includes strength and joy. I am grateful to have learned through this that our measure of strength is not always in a physical measure in his eyes. I am made strong through him and he can use me, no matter how weak I may feel.
He can and will restore my health even if I don’t have the timeline or exact plan for it.

I have read through Job since Mom died. I cannot imagine his grief and suffering but can tell you as he told his friends…I will not turn from him.
I have never been more weak and vulnerable physically in my life and never felt as close to with such a passion for my Savior. Amazing how He can work through our trials.

I remind you all again and again, as I do my children every morning before school…
SMILE at people. Everyone has their struggles and you never know what one caring face in a crowd may do to help them. Kind words and smiles. God given grins.

Thank you for caring…
I will do my best to help others the way God has sent people to us this last year.
Daina

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5 thoughts on “Light at the end of the tunnel…

  1. I can’t even imagine your pain! Thank you for the update! I’m so happy you have an AWESOME man and family in your life. Love you and think of you often

  2. After reading, I feel like a whimp. Praise God for a thoughtful patient physician. Thank you, Richey, for being an example to all. Daina, I live you. So much. It makes me so happy that you choose to draw close to Christ.

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