Health Update

For several months my pain has been manageable. Nothing has been out of control as far as swelling and I’m used to my other aches and pains. But lately, something has been creeping in. Testing just revealed that I am battling a parasite. To say I’m freaked out is a huge understatement. A parasite was discovered last year. I dropped raw milk out of paranoia and followed an herbal protocol that did the trick. I looked at my notes and it happened around this same time last year. Certain parasites can come back each year despite treatment and there are close to a 1,000 that can infest the human body. I play in dirt (compost) when I garden, wipe a kid’s behind everyday, clean a little box for two cats, handle raw meat, vegetables from my garden, farmer’s markets and the grocery store, I eat at restaurants, and I am a freak about washing hands. I could try to figure out where this critter came from and go crazy cleaning and generally freaking out. Or I could do what I am supposed to to get rid of it (going herbal route) and support my body the best way I can. I knew something was amiss though due to pain all over rapidly increasing over the past couple weeks. My boxing gloves are on.

A recent visit with my rheumatologist to go over current lab work revealed MCV and MCH still just above normal. My doctor said that since they are not too high above normal, despite being up there for years, and because the additional blood work he had done came back normal, he is not worried.

blood work 2014

He and I got to chatting and I said that sometimes I wonder what in the world I will feel like when I am sixty if my body is doing this kind of stuff at forty. He responded with a sympathetic “yes…” that trailed off. It was not what I was looking for. I wanted to hear hope. I wanted to hear, “Oh, you’ll be fine!” accompanied with a smile. Honestly, I wanted to hear it even if he didn’t think it was true. Is that bad? I have hope. I fight hard against seeing this as a downward spiral even though people all around me are getting worse. But on the other hand, I do appreciate my doctor’s honesty. No mention was made of my antibiotic protocol (now one year and four months into it), so I am continuing with it. I am scheduled to see my doctor and have blood work done again three months from my last appointment.

Another flaky, red patch has come about as well, and this time in a more prominent spot. Lovely.

psoriatic skin

Current state of my toes and nails affected by psoriatic arthritis. Thank God for nail polish.

psoriatic feet

Shoes I am getting rid of this week thanks to psoriatic arthritis. Can we please have a moment of silence to mourn.

high heels

I can still smile about it all and sport a pair of Naot heels when I want to. Thank God.

mirror

When I was at my chiropractor’s office yesterday, my four boys were waiting in an area outside the room. One was drawing, one had his eyes closed, and two were on electronic devices. I was sitting on the table in the room with my doctor with my back to the door that was open. I hadn’t noticed my four year old come in and sit down. I had just told my doctor when asked how I was doing that I was experiencing increased pain, blah, blah, blah.

And then I felt a little hand on my back rub up and down a couple times. I turned around to see my little guy. He looked at me and said, “your back hurts?” Oh, it broke my heart. I wanted to take my words back. I am attempting to make the best of the situation by embracing the fact that hardships help teach compassion. My little guy does not have touch at the top of his love language list, so it means all the more to me that he came over and put his hand on me out of compassion.

I find comfort in my pursuit to demonstrate joy to my children despite an uncooperative body.  Because dwelling on what a drag it is to deal with pain and be hyper conscious about food and products is not going to help produce fruit in anyone. Does anyone else struggle with how our children process what it means to have a parent that is not fully well?

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Be Healed!

I attend a Bible study once a week. I enjoy it and look forward to it. It’s a great group of ladies and it helps me to stay disciplined about getting in the Word and having my socks blown off. We are reading through the book of John right now and our discussions are led by what impacted us in our time reading.

The subject of healing came up today as a result of the reading. My group leader and one other gal in our group of nine has an inkling of the state of my health. Part of today’s group discussion went something like this, “You know, healing is a choice. You have to choose to be healed.” Heads nodded around the table. “People get so comfortable being ill that they aren’t allowing God to heal them.” I didn’t say anything.

This may be true for some people. But blanket statements about healing hurt my feelings. I wanted to say, “I have worked my butt off and given up SO MUCH to care for my body and attempt to restore my health. Walk a day in my body with my pain and tell me it’s something you can get “comfortable” with.” I have refused to give up on my body (despite continued setbacks) and I have prayed with my face to the ground in total submission of His will and plan for my life. But here we are ladies and gentlemen, I’m still rockin’ a disease. And I am not any less of a person or a Christian because of it.

I know I’ve said it before, but my heart is heavy, so here it comes again. It is very difficult at times to be a Christian, have a chronic disease and be transparent with people. You can take away my belief in God and the same applies. It is difficult to have a chronic disease and be transparent with people. Simply because we all judge each other. When you add the fact that I am a Christian, you add another layer of judgement–healing comes into play from a God perspective.  It is unfortunate that it can make being real with people difficult and uncomfortable because of the association healing, prayer and faith have. And the way I’ve been made to feel is if you ain’t healed, when then by golly you must not be praying enough or getting right with God. I say, not true and don’t let it hinder going deeper with God or the people that do accept that you have done and are doing all that you can do to make your body right. It is especially disheartening when judgement is passed by someone who doesn’t know me very well or have a clue what God is doing in my life.

During the time that I was sick recently, I was on the phone with the mother of my son’s friend.  She knew I wasn’t feeling well. She doesn’t know me all that well, but knows a bit about my life. She wrapped up our conversation by saying, “You know, 70% is spiritual!” I had a moment where I thought–did she really just say that to me?

Fortunately, I am secure in who I am, who my Maker is and what His plan is for me. It is good!

A New Symptom Cracked Open

I just returned from the dermatologist. She looked at my nails and said they were not a definitive indicator of psoriasis. She said what’s happening to them could be a reaction to anything going on in my body. Hmmm, that’s helpful. She said, “It’s a lot like the rash you had on your breasts and trunk that could have been a reaction to many different things, even something like breast cancer.” Really? Did you have to throw that in there?

And then I mentioned that I was starting to experience changes somewhere else. (And now, you are about to realize that I am sharing what is going on with me not just for my own sake-but to hopefully help others.) I mentioned that I was experiencing this in my rear area. Ah, the joys of autoimmunity just keep getting better, folks. Lucky me got to undress and have that area examined. Glad my dermatologist is a female. It wouldn’t have happened otherwise.

And that’s when she said, “Well, now I think you are correct. It does look like you have psoriatic arthritis.” (That will be a few hundred dollars.) But wait, it gets better. Then she said, “But just to be 100% sure, I’d like to do a biopsy.” Really? First it was my breast she biopsied–which came back inconclusive. Now, it’s my behind. So, this little mama has stitches in her rear right now. How’s that for a little transparency?

She told me to come back in twelve days to have the stitches removed. I reminded her that the stitches in my breast came undone the day after they were put in and I had a bleeding, gaping cut that I tended to with steri strips. Couldn’t I just take the stitches out myself? She pointed out that it might be difficult since they are behind me. Oh, yeah, duh. Well, then my husband can take them out. There, problem solved and follow-up appointment avoided.

“You know,” my derm. said, “There is no cure for psoriatic arthritis. You will have to manage this the rest of your life. You should really start a biologic.” I told her that I would like to finish my attempt with antibiotics. She squished up her face and said, “But antibiotics aren’t a treatment for psoriatic arthritis.” Uh, thanks. I’ll take it from here. She also asked me (sounding very surprised) why I wouldn’t want to start a biologic right away. This question put me off a little. She said it like there are not side effects to biologics.

Potential side effects for Humira

As I was walking to the desk to check out, I was caught off guard by the feeling of tears welling up in my eyes. When I got home, I couldn’t help but cry. I think that I had to process being told once again by someone in the medical profession that what I have is without a cure and lifelong. I knew this going in to my appointment and wasn’t told anything new by the time I left. But for some reason, there were tears. And now I’m sitting here a bit more collected, but with a bandaid on my behind!