Friday, March 19, 2010

The Cost of Autoimmune Disease

John and I were having one of those discussions the other day. The one about our finances and the necessity of spending within our budget. Which made me think about what our budget would be like if I were still working full time. I wasn't thinking that if I were still working I'd be buying expensive things, but rather, if I were still working I'd have a different and more confident perspective on our budget.

Although we Sjoggies know all too well that there is a physical price to pay for our diagnosis, there's also the very real cost in terms of dollars and cents. Of course the medications and doctor visits and diagnostic tests are expensive. But there is also a significant price to pay in a much larger sense: the price of disabling diseases is astronomical when calculating a person's inability to work in a full time capacity and assist in ensuring their family's financial security.

Before autoimmune disease, even though there were periods when I chose not to work, I always knew that I had the capability to provide a good income for our family. Which helped both John and me sleep better at night. It was reassuring for us to know that with my education and experience I could probably land a full time job with benefits in nursing just about anywhere.

But now? Well, now I realize that due to autoimmune disease, there is no possible way for me to be able to work full time, especially in a fast-paced and high pressure nursing job. That security blanket, that comforting belief that I could contribute in a significant way to our income is gone.

Financially, we are OK. John has a good job. But who knows what that means in today's economy? And if, God forbid, John should lose his job, how could I possibly contribute enough to our finances to get us through if we should face tough financial times? The stark truth is that I couldn't. No way.

OK, Julia. Breathe. Breathe. In, and out. OK. Steady, girl.

One of the many reasons that I love my husband so much is for his very level-headed and rational approach to problems, and in looking ahead to our financial future, he approaches this uncertainty in his characteristic style. The kids and I tease him about his ability to whip out a spreadsheet in record time and his fondness for manilla folders neatly labeled and filed alphabetically, but in reality I know that because of these abilities, we will be fine. Somewhere in all those spreadsheets and folders, our fiances are organized and accounted for. And above all, there's a budget. For everything.

Ah, yes. the budget. I try, honey, I really do.

Even more reassuring for me however, is John's larger view of money and it's impact on our life. When I descend into one of my hyperventilating what if what if what if moments, he'll say, "Jul. Our house, our cars, our just stuff. If a crisis should happen, and I really don't think one will......but if it does, our stuff isn't important. We'll get rid of it. But we'll have each other and the kids. The kids all have educations and jobs. They're healthy and happy. That's all that matters. We'll be fine."

I love it when he talks me down off the ledge.

Image by ba1969


Denise @ Sunflowers, Chocolate and Little Boys said...

I completely understand this post. We recently went over our finances and realized that with Hubbys job we can comfortably pay all our monthly expenses BEFORE adding in medical expenses. Thats when things get scary. I am not able to work full time either and just recently started working part time (from home). We desperately need this income to pay for my medical bills but I do believe I would be better off not working at all.

Jenny P said...

Julia you always seem to hit on a topic relevant in my life at that time. I'm wrapping up my first "busy season" and my doctor told me on Tuesday how disappointed she was with my backslide over that time. I'll write a whole post about it (when busy season slows, haha) but I'm definitely facing the 'working full time' question waaaay sooner than I anticipated. And being the one in the relationship like your husband (I have a spreadsheet to track church contributions), I'm always trying to figure out the what-if future. Thanks for sharing this and congrats to you and John for finding the best ways to cope!

annie said...

Julia, I totally understand you. As someone who is just recently getting somewhere with her diagnoses (plural),and after many years of battling health issues,I still have to battle lawyers and insurance people to help them understand that I cannot work, and worrying constantly about being able to pay bills, and feed ourselves. There never seems to be enough left over to save for "in case something happens".
We have been through a few of hubby's job losses, and by the last one I stopped panicking, and started telling myself that there are some things in life that we cannot control, it's not our fault these things happen, and take one day at a time.It's easier said than done, especially when I have little episodes of anxiety even when trying to convince myself everything is under control! Financial woes are an added stress to an already stressed body and spirit and very difficult to deal with.I was hysterical with laughter when I read in our papers here that some financial big chief said that we(Canadians) had to save more money...are these people living in today's reality? Obviously THEY haven't experienced job loss or illness where their whole life is turned topsy turvy. BTW, does anyone who reads your blog have levido? This is something new to me.
Thank you once again for always knowing what we want to hear, and hopefully making others aware of other peoples' realities. Sorry for the long rant...I was on a roll!!

Anonymous said...

Yes, Sjogren is not only a problem for your health, but also for the budget ! That's just so true.
I work full time, but it's getting harder and harder, I'm afraid to ask for a part time or 80 % job. What wil happen then ? I got a better salary than my husband, so I have more pressure to keep my work becaus ewe just buy a flat and need to refund for it.
Sometime I really have nightmare about that.

ILoveThisBar said...

I haven't been diagnosed officially yet. So much running through my head though. I didn't know a thing about Sjogren's when the eye specialist mentioned it to me except that "that's what Venus Williams has." After reading so much online, it is like a lightbulb went off in my head. Things that I totally ignored before because I didn't want to complain. I didn't want to seem like I was making things up. I didn't want to appear "unhealthy." But lately, I've missed so much work for sick time because I can't battle my fatigue. The pain, I live on advil. The "fevers" I blame as a pre-pre-menopause (no other signs) night sweats that happen all the time and the chills that cause me to sit with a blanket even in the summer. The past two winters, the coughing. Not a cold. Just a cough. Pleurisy is painful. I started a new job almost two years ago. I'm in the computer field. Ah, the ever changing technology and the need to learn new things. It has been impossible and I'm afraid because I'm not living up to my normal standards. I read, read a second time and a third. I still cannot comprehend. I sit in meetings and hear the words but what did they really mean? I'm scared mainly for the finances. We struggle because we made the decision for my husband to buy a restaurant and quit his job to run it. It gets better but in no way will support us. We rely on my job for the insurance. In 5 years, I can retire and maintain all benefits at the rate of employees. But will I be able to make it 5 more years? I can't handle the fatigue and I can't perform my job mentally. Yesterday I was talking to a customer at the bar and I forgot my words. I have to reach way back into my mouth to find them. Give me a second. I will be able to come up with it. Oh yes. Budweiser it is. Sometimes I feel so stupid. Very forgetful lately...I even left a bag of groceries at the store the other day. They found them though and I was able to go back and get my stuff the next trip. Wow, I've really vented here. Lord, give me the strength to take it one step at a time.