Tuesday, September 21, 2010

Some random Tuesday thoughts

* I had a busy weekend, preparing for and being part of the team that presented the Christ Renews His Parish women's weekend. What a joy and delight it was! I am tired and yet strangely energized. There's so much I could say and not enough time to write it all down. To the ladies at the Joyful Hearts table, my deepest gratitude for all that you taught me over the weekend. To my sisters on the team, mille grazie isn't enough to thank you for your presence in my life.

* It was so sad to learn last night of Kenny McKinley's passing at age 23. He was a Gamecock who was playing for the Denver Broncos. The police's initial findings are consistent with a self-inflicted gunshot wound. I really hope that it wasn't the case, but if it is, then it's doubly sad. If you ever feel you have no reason to go on, please for God's sake, reach out to someone. Call 1-800-SUICIDE, and you'll reach the Kristin Brooks Hope Center. They can help. And my thoughts and prayers go out to everyone who loved, cared for, and played with or against Kenny McKinley and will miss him so very deeply.

* Do you ever have a "mulling" day? I am so far today.... Not really into talking, just mulling over things in my head. But that's okay.... I'm going to have a "thoughtful Tuesday" instead.

Wednesday, September 15, 2010

Invisible Illness Week

This is National "Invisible Illnesses" Week -- a way to educate/advocate for all of us who do deal with an illness, just not an obvious or visible one. I actually have two, since I also deal with migraines; however, mine are so minimal by comparison that I would rather let those who deal with them on a daily basis speak on that topic. But this is the 24-7-365 one for me.......

  1. The illness I live with is: Primary Lymphedema (I shall abbreviate as PLE). It is a condition in which the lymphatic system does not circulate properly and swelling can occur at the site of damage. Primary is congenital and most likely hereditary. It can manifest itself in early childhood, after puberty, or after age 35. Secondary lymphedema is caused by some trauma or removal of lymph nodes (example: cancer surgery). In so many women, they develope SLE in the arms or sides because of mastectomy. In my own particular case, it was probably present all along, is definitely hereditary (have a cousin with the same condition, just recently diagnosed as well in her late 60s!), and began to manifest itself sometime between ages 14 and 19. I can't pinpoint an exact time.
  2. I was diagnosed with it in the year: 2008.
  3. But I had symptoms since: Who knows? First manifest around 1985-ish?
  4. The biggest adjustment I’ve had to make is: needing support garments almost 24/7 (not in the shower or pool).
  5. Most people assume: that it's more of a cosmetic condition than a medical one.
  6. The hardest part about mornings is: needing the extra time to unravel bandages, re-roll, remove additional compression aids, AND put on the compression wear after showering. I've managed to get the compression hose on in about 5 minutes, but when I get a new pair, it's a few extra minutes for that.....
  7. My favorite medical TV show is: does "Forensic Files" count?
  8. A gadget I couldn’t live without is: well, nothing that directly affects my condition, but my MP3 player.
  9. The hardest part about nights are: summer nights, when I'm wearing tubiform stockings, compression aids, AND 2-3 sets of bandages per leg. SWELTER!!!
  10. Each day I take __ pills & vitamins. Okay, about 10 vitamin/supplements, and 1-2 pills each day (not related to lymphedema; no pills for that!)
  11. Regarding alternative treatments I: am already utilizing them.... well, I don't consider MLD (manual lymphatic drainage) an alternative treatment, but some physicians do, I'm sure.....
  12. If I had to choose between an invisible illness or visible I would choose: I don't know which I would choose. There are times "invisible" is better, but you get so weary of explaining, "yes, I have an illness; no, it's not some quacked-up quasi-illness.... do you want to see information on it, because I can give you more than you'd ever want.
  13. Regarding working and career: I still get to work, but I have PT every two weeks, and so I work it as my lunch hour .... and if there's a difference, I make it up by staying late or coming in early.....
  14. People would be surprised to know: lymphedema isn't just a "cosmetic" condition but if untreated, it can lead to serious issues.
  15. The hardest thing to accept about my new reality has been: this is 24/7/365 for the rest of my life. In my case, it's congenital and so I have to manage it, the same way that anyone with a chronic condition has to manage theirs.
  16. Something I never thought I could do with my illness that I did was: nothing. I didn't realize I had this condition until I was 38 and so I just always DID with it anyway.
  17. The commercials about my illness: What commercials? Totally not on the commercial radar .... and thank God because there's not a drug out there to be advertised for it.... so none of the "what a wonder drug, here are the 40 million ways it could kill you" ads.
  18. Something I really miss doing since I was diagnosed is: Going support-hoseless.... I do in the shower, and a couple of times when I have had a migraine develop, I've gone to bed unwrapped or unhosed. And I won't be able to do hot tubs, saunas, steamrooms, etc. again. But otherwise......
  19. It was really hard to have to give up: my razor. Yep, I'm not allowed to use a single-blade, double-blade, quatro-blade, or any blade. Electric razors, those are fine. But if I nick the skin and infection sets in, the protein-rich lymphatic fluid is nothing but a breeding haven for bacteria..... :( Le sigh. So I don't get quite that silky smoooooooooooooth closeness. Hmm, wonder if lasering my legs would be okay! And Nair/Neet STINK (literally).
  20. A new hobby I have taken up since my diagnosis is: hmm.... cooking? Nothing really. It's a condition but not necessarily life-limiting. It's as limiting as I allow it to be. If I don't take care of myself and do the right thing, then yeah, it's limiting.....
  21. If I could have one day of feeling normal again I would: go hoseless!! :D
  22. My illness has taught me: more about the way the human body works. I had so little knowledge (still do, I think) about the body's many, varied, interesting detox/elimination processes.
  23. Want to know a secret? One thing people say that gets under my skin is: well, about the condition: nothing. Not that I'm not ready to advocate, but most people don't ask much more than "so what do you have to go to PT for?" You do a short explanation, and it's like, "Oh. Wow. Didn't know there was such a thing...." and that's as far as it gets.
  24. BUT I love it when people: ASK QUESTIONS!
  25. My favorite motto, scripture, quote that gets me through tough times is: my thought is that I have this condition, it does not have me.
  26. When someone is diagnosed I’d like to tell them: do not hesitate to learn about the condition, and DO NOT miss an MLD treatment, and FOLLOW THEIR INSTRUCTIONS. Yes, it's a colossal pain in the @$$ to bandage every night or use a pump (if you have fibrotic skin), but it beats bout after bout of cellulitis all to hell. I had ONE bout, extremely mild, no open wound -- and it STILL took 3 weeks of antibiotics to get it under control.
  27. Something that has surprised me about living with an illness is: well, for me, it was the fact that after 20-ish years of untreated and undiagnosed PLE, my skin had not become fibrotic, or otherwise horridly disfigured. I consider myself TREMENDOUSLY lucky in that respect. Even my physical therapist was VERY surprised. In some ways, it was almost like it had just recently started happening, instead of having 20 years or so of this condition.......
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just listening to me.
  29. I’m involved with Invisible Illness Week because: I believe in advocating and educating. The more you know......
  30. The fact that you read this list makes me feel: happy -- and that I have made a little difference in helping people learn and understand

Do you have an "invisible illness"???? Click http://invisibleillnessweek.com/ to learn about Invisible Illness Week, and consider participating in "the note" project!

Thursday, September 09, 2010

It Is Now Official....

As of today, September 9, 2010, I am an "Old Fart" (R) : I ordered my first set of bifocals.

I've worn glasses or contacts since I was 15. Twenty-six years of wearing single-vision lenses has been good to me. But it's only been in the last few weeks that I've noticed that I don't need to sit quite as closely to the TV, computer screen.... or to have the hymnal or choir pieces quite so close either.

Welcome to your 40s, kiddo!!!

Sunday, September 05, 2010

Slipping the surly bonds of earth....

For the first time in a while, I had to fly on business. Most of the time, I don't travel for work, or at least no travel beyond driving distance. After one particular leg of this flight, I was swearing the same thing: "If I can't drive there, I won't be there."

Chicago beckoned, so onto the big bird I went. Every song about flying or traveling was going through my head -- by the time we landed in Chicago, I was humming Arlo Guthrie's "Coming into Los Angeles" (wasn't about to sing the words, heck no!). G-vegas to the ATL was a piece of cake: 30 minute flight. ATL to O'Hare ... it was all good until the final descent/landing. I mean, at one point in the flight, I was thinking, "You know, I ought to ask the attendants about their careers. I mean, if something ever happened, it would be really cool to do this." By the time I was leaving the plane, I felt like saying, "You're a braver soul than I, Gunga Din!"

I don't know what happened: the descent angle, the time of day, the stress and trying to find my travel party (coming in from various airports)... but I got sick. UGH!!!!! I made it into the terminal, called the lead in our party and got on the bus to the rental car facility where we were to meet. Turns out, I landed at Terminal 2, they were at Terminal 3 and ended up on the bus at the same time. We got going but between O'Hare and our hotel, she had to pull over for me.

How embarrassing. Here I am, a grown woman, with a nice job, terrific friends and family, and a good life (on the whole), and I'm frickin' crippled by motion sickness and migraines (yeah, I think one of those might have been beginning to build as well). I know it's not anything I can control, necessarily, but I mean really. So I missed dinner that night while nursing my aching head, neck, shoulders, and stomach.

However, I must say that I got to nurse myself in grand style!!! Highly recommended: Hilton Garden Inn's beds. Yes, you can buy them online, too. However, no way am I going to spend that much on myself right now. But lush and lux they are: oh my! I think I sank into the bed and barely moved. Divine, just plain divine.

The next morning, we took a tour of a sister company, and one of their specialty labs that does work across the company. It was truly amazing to see everything they do and how it's put to use in the real world. After the tour, it was on to the Corporate offices, and into 2 days of meetings (well, one afternoon, one morning, and then a short meeting for our team). But on the drive up, I couldn't help but chuckle. I saw a turnoff for Harvey, IL -- and I wanted to go soooo badly, just to see the shell of the Dixie Square Mall. One day, my plan is to get back to Chicago and make a tour of all the locations from The Blues Brothers. But I digress.

For dinner that night, we went to The Glen Town Center -- it's a shopping/living/dining area (apartments/condos over the stores or restaurants). It's kind of like downtown Greenville combined with Shoppes at Greenridge. Pretty neat idea, I must admit. Dinner was at The Yardhouse -- I had a salad and the spicy tuna roll, which was not sushi-like at all. To be fair, the waitress did tell me that it wasn't a typical sushi roll. However, may I suggest that they call it a tuna cake instead? Because that's pretty much what it was. Tasty, to be certain: tuna over the spicy sauce over an edamame layer. I could only eat about half; it was good, but the salad filled me up, as well as our non-cocktail hour offerings.

After our team meeting on Tuesday, my local counterpart and I had to head back to the airport. Our Group HR Director called a ride for us from a company with whom they have an agreement. The limo driver showed earlier than we expected (or told them to arrive) and at the loading dock ... oops! But he got us to the airport in plenty of time.

One small complaint to the fine people of O'Hare International: for all the air traffic you encounter, you might want to talk to the TSA about a grant for more security stations! The security lines were way longer than necessary, and when I finally got to my gate, they were boarding already! I wasn't late-late, but surely later than I like to be. It would have been nice to have time to grab dinner from somewhere, even if it was "Sammies 2 Go" or something. Thank goodness I had a few minutes to spare at Hartsfield. By the way, a huge tip-of-the-cap to the pilots for the ORD-ATL leg on a fabulous job for both takeoff and landing (hardly even noticed them!).

So what's next on the agenda? Putting all these timetables from the meetings into action this week!! :)