Posts from the ‘Auto-Immune Diseases’ Category

Jan 27

Four Angels and a Cigar, Part 4…On with Life

As life moved on, I found some interesting projects to keep myself busy with. One of which was the metal swing. Now, remember it looked like this?

I debated painting it bright red with white arms/base, which was what my parents looked like, but then I found a gorgeous turquoise color. It was love at first sight. Read more

Jan 21

Four Angels and a Cigar – Part 2

The Mayo Clinic – Rochester, Minnesota

My incredible husband (my guardian angel) took me down for the first few days of appointments. He was an incredible help – not only because I didn’t feel comfortable driving (with dizzy spells), but he also commandeered the schedule and guided me to where I had to go! For the rest of the week, my oldest daughter Alex (another guardian angel) took over. I was so thankful for their guidance and company – the whole process was overwhelming. (I realized after I published Part 1, the title should have been Six Angels and a Cigar! Tim and Alex were beyond angels!)

It was 7 days of appointments…only 2.5 hours the first day, but the other 6 days were 6-10 hour days at the clinic. Add in two more trips in June for a total of about 2 1/2 weeks more at the Mayo…I was poked, X-rayed, MRI’d, spun in a chair, tied down to a table so they could flip me up and watch me almost pass out, sat in a capsule (during which I pretended I was captaining a space ship), and gave enough blood for all the mosquitos in MN to be jealous. Read more

Jan 18

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Four Angels and a Cigar – Part 1 of 4

{After I read this blog yesterday: Finding Your Voice, I was inspired to publish this series of posts that I had started writing last year.}

No this is not a joke post, although you may find a few things funny on the way to the cigar.

And so here we go…

Let’s start with a little background: Read more

Mar 24

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A Clear Head and a Good Heart

My daughter Sam is in the Studio Arts program in college and this is one of her recent creations. Isn’t it AMAZING!?!

Little did she know that when she gave it to me it was incredibly significant to what I was going through.

I’d been having some health issues and the doctors had decided that I needed a stress-echocardiogram to look for heart damage and a brain/inner ear MRI to look for a tumor. Needless to say we didn’t want to tell the kids until we had definite answers…positive or negative.

I was scared to death.

I cried as I showed my husband the print and he nodded, knowing just what I was thinking.

He accompanied me to the tests and the doctor visits after, thank God, because I was a mess. I’d always been the caregiver – dealing with doctors on behalf of parents, kids, other loved ones, and friends. But this…this was about me, and I knew I couldn’t do it alone.

Once we received the news that everything was good, we felt like a huge weight was lifted. We didn’t have all the answers we needed, but we sure had some fantastic negative results!

We did receive one answer (to the loud hum, aka tinnitus, and hearing and off-balance issues I was having): Meniere’s Syndrome in my left ear. It’s a health issue diagnosed by elimination…meaning there’s no one test that can diagnose it. It brings with it random episodes of Vertigo, a feeling of being off-balance, and sometimes permanent hearing loss. My hearing loss is permanent, but only moderate/severe to mild (I can’t hear low sounds but I can hear high-pitched sounds). It can be progressive but doesn’t cause full hearing loss, and it doesn’t usually affect the other ear. A hearing aid should help, which I hope to get this week. So if you see me walking around a store and I’m wobbly, remember I’m not drunk, it’s just the Meniere’s!

I’ve learned one thing from all this: if you have tinnitus in just one ear – get to an ENT or Audiologist right away! I’d been having the loud hum off and on for probably a year, but just figured ‘everyone gets tinnitus, don’t they?’. Wrong answer.

My other health issues will have to wait until April when we go to the Mayo Clinic for some specialized testing. In the meantime I’m just hanging out…writing a little, getting myself a new look (see the new profile photo), and reading a lot of books…and once in a while watching those crazy babies who sit and snuggle with me!

Life is good…I don’t have heart disease or a brain tumor!

Patty O

ps…Back to Sam’s art…now we can relax and have her print as a reminder of just how blessed we are. It will soon be framed and in a place of honor on our wall.

pps…Notice I didn’t say an empty head. I have too many friends that would have far too much fun with that. 🙂

Nov 1

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I Almost Forgot I Was Sick…

STOP!

If you’re looking for a funny post, this isn’t it. Nor is it a home decor post, or a cute kid saying post, or a religious post, or an art post.

What this is, is a health post. Not a whiny, woe is me post, but rather an epiphany post.

Late last week I picked up a prescription at one of our local pharmacies, and as I watched them through the drive-through window, my heart leapt and I thought…I could work there…I could do that!

And then came the epiphany…No, sadly, I couldn’t.

Not because I couldn’t learn what to do, nor because I lack the customer service experience. But because my health wouldn’t allow it. {ok, I whimpered a little here…ok, in all honesty I said “damn”.}

In the past year, my Sjogren’s Syndrome has gone from being a somewhat silent illness (under control with the right medicine…as long as I didn’t overdo it), to my daily foe. 15 years ago I was known as ‘The Energizer Bunny’ – able to multi-task with the best of them; juggle job, motherhood, work, community plays, you name it – I had energy for it. 13 years ago, I couldn’t seem to find any energy, I hurt everywhere and became depressed…I’d just had Gabi. It took 2 years for doctors to figure out it was Sjogren’s Syndrome causing the problems. Medication helped tremendously until last Fall, when my body fell apart. Now don’t get me wrong – I’m better than I was a year ago – the shoulder has been fixed, the lower back/sciatic is lots better – it’s the regular Sjogren’s stuff that’s still running on high.

There are millions of people who have Sjogren’s – in fact approximately 4 million in the US. And there are millions more with RA, Fibromyalgia, MS, Lupus, and many other auto-immune diseases. These are the group of chronic illnesses described as ‘Invisible Illnesses’. Why? Because you don’t see a limp…or an open wound…or a cast. You can’t see it…period. On any given day ‘we look good’…in other words, we can’t be very sick…right!?! Wrong.

Auto-Immune Disease is described as ‘when your body’s cells attack themselves’. No need for an infection to get you sick…your system does it for you. Infections just make it that much more fun (jk) – they just throw your disease into high gear.

It can be like having the achy flu EVERY DAY…or being so tired that you can hardly keep your eyes open, even when you’ve had a good night’s sleep…or your joint pain may flare up – with or without exercise…or your eyes and mouth are so dry that you need medicines, surgeries, or dental work to help…or you may get hit with Brain Fog and it leaves you wondering if you are getting Alzheimer’s because you’d swear your child never told you the fact she insists she did – even though your spouse saw it. There’s no cure, but there is medication to help (thank God).

There are so many more symptoms that all these diseases bring with them…and so many levels within each illness. Some people are better than others. Some unable to work…while others can.

We need to all remember this – there’s no “ONE SIZE FITS ALL” auto-immune disease level…so PLEASE don’t judge others. A – you don’t know what health issues they have…and B – you never know what someone else is going through in their lives.

I think I can speak for most people who have auto-immune diseases when I say the following: If you don’t understand what I’m talking about above, we pray you never do…because sometimes the only way to understand what someone is going through, is to go through it yourself…and we hope you never have to.

And if you do understand, thanks for the moral support…know that I’m here for you if you need an ear, or a gentle hug…and best of all…I believe you. Let’s keep smiling…whether you dress up or have a sloppy day…do whatever makes you happy – and don’t forget to look for the BLESSINGS and HUMOR in everything!

As for the job thing…I’ll keep watching these two funny, little, daycare babies…we can hang out and color, or work on our alphabet, or rock-a-bye. And sometimes we (they) run, chase Motzy, or march around the couch playing cymbals while we listen to John Philip Sousa on the stereo. They’re pretty flexible with how I’m feeling…and thankfully, so are their parents. These two little girls bring great joy to me – I hope your life is just as blessed!

Have a great weekend!

Patty O