Little Victories

"Success is made of little victories."  What's your little victory today?: Helpful Quotes
(img via Nomadic Lass http://www.girliestgeek.com)

Today provided cause for celebration. Today for the first time since the end of October my INR is back in range!!!! It was a solid 3.3! Today Dr. C said “See you back in a MONTH”! Today I sighed the largest sigh of relief I have sighed in a long time, simply because of a test result. This may also mean we have figured out the new dose of warfarin I will be on thanks to the manufacturer changes and hopefully when we recheck it in a month that will prove us right.

While at his office he also repeated the freezing of my wart that is hanging out on my right thumb. First time he froze it he used the canister of Liquid Nitrogen. This time it was old-school style with LN in a Styrofoam cup and a Q Tip applicator.  I don’t recall my skin sizzling during the first freezing. Was rather fascinating, or at least it was to me, but I’m a bit of an oddball when it comes to medical procedures. I do work on the fringe of the alternative medical field and therapeutic realm so I guess it isn’t all that weird. After the area around the wart heals from the LN treatment for a couple days I will continue with the adjunct Duct Tape Treatment that Dr C had recommended after the first freezing.

Talked to him about my last appointment with my Rheumy, the angry email that resulted due to the dreaded ‘roid’ rage that I sent my Rheumy and the fact that even though today is the last day of my Prednisone taper, I am not fully over the flare symptoms. So he recommended that that I email or call Dr. L and ask his opinion on extending my Prednisone or just relying on my at home treatments for my symptoms. I emailed, I’m still waiting on a response from Dr. L.

At least we had a small victory today, I rejoice in the small things and celebrate those every chance I get.

-N

Letting Myself Have Lupus.

“For after all, the best thing one can do when it is raining is let it rain.”
Henry Wadsworth Longfellow

Acceptance is a funny thing, especially when you are dealt a card in life that you can’t give back. Oh I’ve tried many times to give this back to the doctors. It’s a running joke I make to my PCP on a regular basis. He may not find it as amusing as I do but, it does entertain me from time to time to offer to give back my illness, it would make things simpler if that’s how it works. I’ve asked many times where the return box is because this isn’t working out so well for me.

I simply do not know how to be the sick person they tell me this requires me to be. My therapist says, that  in part is my fighting acceptance. I argue that I take my medications daily, I don’t revolt against the doctors. I have even stopped arguing so much when it comes to doing rounds of prednisone. What else is there to accept?

It still feels weird to say that I have a lifelong illness that affects damn near everything I do, want to do, or could possibly plan to do. It still frustrates me to have to change plans at the last-minute, is that where the final stage of acceptance would benefit me? Would it frustrate me less if I just gave in completely and let this horrible disease call the shots.

You see…I’m a bit of a control freak. I know shocker right? This really showed when everything in my life spiraled out of control and I starting obsessing over the tiniest little details I could control. It still is something I have to keep in check or it gets nerve-wracking. I have some tendencies that could be considered OCD. It is something I monitor and so far they haven’t gotten out of hand or disrupted my life too bad. I am a bit of a germaphobe thanks to this.

I’d like to take a moment and discuss what acceptance of an illness might look like on a ‘normal’ person level. You start feeling run down, you argue that it is just lack of sleep. Your throat starts hurting and your nose starts getting stuffy, man it must be allergies, because you don’t have time to be sick. Then everything starts tasting weird and the panic sets in, you realize that your friend or coworker was sick just the other day, and this is starting to look all too familiar. You fight it for a few more hours at work, and then all of a sudden you can’t go any longer and you go home early. You a few days into your illness by this point, before you have accepted your fate. You still go through feeling frustrated because it disrupts your schedule.

Why would it be different for a Chronic Illness? I would suspect scale wise I’m still right on track. (There isn’t a track)

Now imagine feeling like you are constantly fighting off the flu (accept it). You deal with constant pain in your joints, routine fevers, rashes, nausea (accept it). Doctors appointments so routine they know you on sight, who you are there to see, and can tell if you are there for a routine test or visit, or if its one of your flare visit, simply by the sound of your voice and appearance (accept it?). This is your normal. This is your life. This is what they tell you to expect for the foreseeable future, and unless they find a cure, forever, for life until you die. You will always be sick on some level.(Have you accepted it yet?) Then when you finally figure out how to manage your daily symptoms, and move forward with life, and find your footing, you encounter flares, you know those pesky things where you’re manageable symptoms all spike to off the charts levels and leave you barely able to hold it together long enough to think through what the next step needs to be.(Why haven’t you accepted it yet?) This is going to happen over and over. The hope is to find a treatment plan to minimize the impact, but the experts will tell you that sometimes flares just aren’t avoidable. That it is just something you have to learn to live with. (Wait you are overwhelmed with just the thought of this?)

Letting go of the healthy me, that woman who had a bright and shiny future ahead of me, and altering my plan for the future to allow for this new version of me to exist hasn’t been easy. It has been a lot to take in, a lot to mull over and consider. I’m an over thinker by nature and it usually gets the best of me I know, but I also know I’m usually ahead of the game when it comes to planning and having a backup plan in life.

Who knows when I’ll fully accept that I have Lupus and APS, there is not a time line on this type of things. Over the next little while, I’m going to figure out a new approach to self-care, a flare protocol, what this all really means for me. I’m truly going to work on acceptance. I’m going to work on figuring out what it means to let myself have Lupus.