Phone Calls

It’s going to be ok. 

I don’t know how many times I have said that but wasn’t sure if it was true.

I don’t know how many times I’ve chanted it out loud, in my head, to you, to the kids, to family and friends.

It’s going to be ok. 

This time I meant it.

My doctor called us over the weekend. Yes, I have the kind of doctor who calls on a Saturday. He’s writing a book and it seems my case is an entire chapter. Or at least it’s working out to be that way as he continues to write. I’ve given him permission to call as he pleases for a variety of reasons, not the least of which is we are helping each other. I help him as he researches and draws conclusions on the hell that is an auto-immune disorder inside my body and he helps me beat it to the ground.

My husband answered the phone on Saturday, and handed it to me with that look in his eye I’ve now come to know as ‘this better be good news or I’m going to throw this phone out the window.’

It’s a look that simultainiously scares and humors me. I’ve learned in these situations I can either panic or I can laugh. My body now responds by doing some odd dance between the two.

After exchanging pleasentries Dr. C. asked me some specific quetions about my pain and how it has been responding to treatment. We’ve agreed it’s been hard to tell truly how well I’m doing pain wise because I am on some fairly hard core pain medication to keep me comfortable. But since the steady drop in my inflammation numbers, has come a steady decline in my ‘need’ for my pain meds ‘on time’ or ‘exactly’ at six hours.

If you have ever had to take pain medication for something that hurts very badly you know what I am talking about. It hurts so bad the pain creeps back up , slowly, before your pills are anywhere near the six hour mark when you can take more…and you stare at the clock thinking you will, in fact, die if time does not tick down faster.

But I don’t watch the clock any longer. And as my inflammation remains on it’s downward slide, I’m not anxiously awaiting the relief of my medications. I need them, but I no longer anxiously await them.

As Dr. C. and I talked about exactly when my pain began to change, etc. I noticed he was referencing recent lab results and sensing I was perking up he mentioned my numbers were now all rather ‘normal.’

Normal? You mean high normal like we discussed the other day? You mean normal for a Lupus patient? You mean normal normal?

Normal. Close to zero on some. Zero on others. Like a regular person.

Now, we talk about my ‘sed rates’ and my ‘c-reactive protien’ and all these inflammation markers until we’re blue in the face at each office visit. These and many, many others. Never have the words ‘normal’ or ‘zero’ ever been used. Ever.

Sensing I was annoying the good doctor by answering the questions for his book as best I could but by following each answer with ‘so you mean my inflammation markers are really that low?’ he finally said to me ‘Please, know this:  we still have a long journey ahead of us, but as of right now your numbers look good. We’re making great progress…’ and then he trailed off telling me about how he’ll speak on this in England soon and he only has an hour and while he talked my mind was in this jumbled state of questioning if what he said could really be true.

Had my inflammation really gotten itself squashed down that far? With the inflammation under control, the other medication can now be working double time- and THEN we get to lower the steroids EVEN FURTHER. I might lose the weight soon. I might look like myself soon. I might be able to exercise and go back to work and…and…

Erin, have a Happy Mother’s Day. Tell your family what I told you about the labs. Rest up. You still need rest, we have a lot of work to be done still. And yes, your numbers are really looking normal. 

Tears in my eyes I hung up the phone and nearly floated down the stairs to tell my husband

It’s going to  be ok.

We’ve found a way now to keep the inflammation down. The drugs are working. We get to try and lower my steroids again tomorrow.

It’s going to be ok.

Crying I knew I wasn’t just wishing it to be true as I said it this time. I feel the change in my body. I feel the change in what I can and can’t do during a day. Sure I need to build up my strength after two years of surgeries and rest…but I can do that. I can DO THIS.

It’s going to be ok. 

I can get myself back in shape once we get these horrible drugs out of my system, making me look funny and feel horrible. The side effects will lessen as we taper down. I will, slowly, be able to do more than walk to the end of the block with the dog. I’ll be able to handle cooking dinner AND cleaning it up without exhaustion and pain.

But more importantly I’ll be able to repair the battle wounds on those I love who have been deflecting all of life’s usual bullshit from getting to me so I can heal.

It’s going to be ok.

I’m going to reclaim my life. It may not be the life it was before Lupus, but it will be a full life after Lupus. One in which I can be myself again- that independent self that is thankful to have had the amazing support of her husband and those who love her- but who wants them to rest, and let me carry the load for awhile.

That is, after all, how marriage works. How family works. How friendship works. And now I will work hard to continue to heal. To continue to keep those numbers down. To continue to taper off the steroid. To continue to get out of this bizrarre body until I feel comfortable in my own skin again. To make our house WHOLE again, as we regain control, or at least regain a portion of control.

It really is going to be ok. 

I accept it will never be the same, but I am stronger now than I ever was. My family has been through hell and we may be weak and weary, but when we clasp hands and laugh and smile together there is NO stopping the four of us.

It’s going to be ok.