A Reoccurring Theme

A Reoccurring Theme

I've noticed something in the last few weeks that seems to be becoming a theme. Once I had received my Lupus diagnosis, I started crossing paths others with the same disease. Several of them had been recently diagnosed. After a coworkers grandson and a non-blood related family member were recently diagnosed within a week of each other, I started thinking.  Is this coincidence related to the increased ability to better diagnose Lupus?  Are more people acquiring Lupus at a higher rate? It sometimes feels like a "catch all" disease that when we have symptoms which are hard to explain, or difficult to pinpoint, that we are lumped together under the Lupus umbrella.  However, I know that just in the last few years, the understanding of autoimmune diseases seem to have achieved a better understanding.  Lupus, Fibromyalgia, Rheumatoid Arthritis, Hashimoto's Disease, Sjogren's Syndrome and Raynard's Syndrome,  just to name a few, seem to be more recognized and discussed than in the past. However, I was not in a place to know about these diseases until one of them landed on my door step. So perhaps it's just that I am more in tuned to the conversation now that I carry the Lupus label myself.  

At any rate, it is upsetting to hear of others who will have to adjust their lives to accommodate this disease, to change and perhaps loose things that matter deeply to them. I understand the denial,  anger, fear, and the sadness. However, I do know that with some changes, the help of medications, and some new habits and behaviors, they should be able to live a good life. There will be things that they will have to give up, and there is also the challenge to find a way to do the things you love in a different way that will not induce illness or flares, or at least not bad illness or bad flares. It can be hard but, it can be done.  

Many times I take part in an activity knowing that I will have to pay the price in discomfort or pain.  But I make that choice so I am not losing a part of me that I hold dear. I have learned to plan ahead. Often I'm saving my energy for days in advance, resting, eating right, avoiding triggers (sun, infection, trauma, stress), then going to an outdoor event or doing a physically exhaustive activity, knowing that I will be sick or in pain for several days after, as payment for that bit of joy. Sometimes it's worth it.

I'm learning how to live my life with the help of information, medication, self care, the help of others. It's a good life. So, I believe those newly diagnosed that I spoke of earlier, will learn, make changes, and also have a good life.  

Losing Pieces

Losing Pieces

Since being diagnosed with Lupus I Sometimes feel like I'm losing pieces of myself, things that I could do or liked to do that is not part of me anymore. Many of these things were what I thought made me who I am, how others saw me, or who I hoped to be someday. It's strange as these pieces of me are falling away and I am left to examine who is left.  Is it me, I mean the REAL me? It is my journey, I get that, but I feel as though the world is getting smaller as I lose these bits. Some of these things I didn't think were that important at the time, but as they accumulate I feel each loss more acutely. 

Wouldn't it be great to just jump in the car at the drop of a hat and meet friends at a barbecue? Instead I'm packing extra equipment to participate in any daytime outdoor event. Never really knowing how my body will react to any given situation or exposure, makes the event so anxiety filled its difficult to enjoy the moment. Camping is risky. Traveling is also a challenge. No matter how careful I am, most likely there will be a payment extracted at the end. Sometimes I just do the things anyway and know that I will be sick for a several days afterwards. I used to be able to sleep anywhere and very deeply. Insomnia is my late night companion now. Well, that, and the cat, of course.

It's easy to fall into despair some days, but really I'm not as bad off as some others with Lupus. I'm actually in better shape than most, and I'm grateful. But there are days that I really miss the other me. That woman who is able to do all those things, who could say "yes" often, who had the energy, who could remember names, who could stay out late, travel light and sit on the patio. This new gal is ok, she is much more needy than she likes to be, she tires out a lot and has to say "no thank you" often. She is moving slower, not able to participate, or just isn't feeling well enough to join in.  

Here are a few examples of my missing pieces: 

feeling healthy

traveling light

size 10

independence

stamina

memory

kick ass work ethic

siting in the sun

flexibility

bicycling

reliability

friendships

carefree attitude

day time outdoor activities

spontaneity

being able to say yes

sundresses

healthy paychecks

benefits

muscle strength

energy

patience with myself

being pain free

sleep

dancing

So, here I am, this other person with limitations, with missing pieces.  I'm a "Jarschke Girl" and like my sisters, we hate limitations. In true "Jarschke Girl" fashion, I push the edges of those limitations just to be sure I can still do things.  I'm not missing that part of me yet. I will be getting into trouble with my disease now and again, but I'll still be trying to be me. It's a balancing act, to do all I can, but not fall over the edge. Sometimes I get a little to close to the edge and pay the price, but I'm still living, still doing what I can, and still having a good life.