Friday, January 30, 2009
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Monday, January 26, 2009
My five questions:
- If you had to eat the same three course meal everyday for the rest of your life, what would it be? Chocolate, chocolate and chocolate!! Okay maybe not the healthiest answer, but it is probably the most honest one!
- Are any of your real life friends, bloggers? I have become real life friends with people I have met through blogging, but no one whom I have known only in "real life" blogs. In proofing my answer, I realized it isn't altogether true, my mom, with some help from me, has started a blog!
- You suffer from several chronic illnesses that make your life very hard at times. Has blogging helped you to cope with your illnesses in any way? Would you recommend it to others in your situation? Blogging has definitely helped me to cope by allowing me a place to express my feelings and in providing me with a wonderful support system of people who understand because they are going through it too. In addition, it has brought me much joy and happiness as I have met other bloggers from all walks of life and situations. Being chronically ill can make your world small at times, and blogging helps to open it up. I would recommend blogging to others in my situation for all of the above reasons. It's also cheaper than therapy and a lot more fun! :-0
- You enjoy taking photos. Which has been your favorite capture so far and can we see it? This questions feels a lot like asking a mother which is her favorite child! I like a lot of the photos I have taken but in different ways. Some are sentimental for who they are of, others are good shots, and some just bring back a good memory or time. I guess the most recent one I have liked a lot is one of my street when the leaves were still on the trees. I like the color and way they tree line leads the eye down the street. I love nature shots.
5. Is there a memory of something embarrassing that you, or someone you know, did that makes you smile every time you think of it? If so, tell us, pleeeeeease. Oh, I can see getting into soooo much trouble with this one. . . Hmmm how much am I willing to reveal?! Okay, this doesn't exactly make me smile (more like cringe!) but it IS true! I was undergoing some same day surgery a few years ago and while I was being prepped I started a conversation with the nurse who was putting in my IV. I ended up asking her when her baby was due (are you already ahead of me?!!) and SHE WASN'T PREGNANT! I could have crawled into a hole and died! To make matters worse, she wasn't just prepping me, she was the nurse who would be administering my anesthesia for the procedure!!! Luckily she didn't hold a grudge because I am still here today, but let's just say I NEVER ask a women when she is due even if the baby is crowning!! Lesson learned!
Now for the fun part for you. I have let you learn more about me through this interview. I want to learn more about YOU! If you have any interest in playing the game here's what you need to do:
- Leave me a comment saying "Interview Me".
- I will respond by e-mailing you 5 questions (I get to pick the questions).
- You will update your blog with the answers to the questions.
- You will include this explanation and an offer to interview someone else in the same post.
- When others comment asking to be interviewed, you will ask them 5 questions, and let me know when you post it, so I can link back to you.
My upstairs neighbor has always been very secretive about her age. She simply refuses to tell how old she is. I laugh at her, because she looks to be about my age, and I just can't see guarding something like that as if it were a state secret. Well tonight we were all asked our names, birth dates and phone numbers and out came the information!! I laughed so hard because she is actually a year OLDER than me!
Thankfully it turned out to be a false alarm. Our carbon monoxide detector decided that even though it had power from being plugged into the wall, it would go off anyway since the backup battery in it was dead. Does anyone else out there remember the episode from Friends where Phoebe's smoke detector goes off in the middle of the night and she can't get it to stop? She removes the battery and it still goes off and finally she beats it with her shoe. It stops momentarily and then goes off again driving her crazy. She wraps it in a blanket and puts it down the garbage shoot. Well, no one could get this thing open to take the battery out and as soon as the police and fire departments had cleared out, the thing decided to go ballistic and not just beep occasionally but to wail, loudly and continuously! I tried putting it outside in the car, but even out there it was so loud it would have kept the neighbors up all night. I finally threw it down on the slate patio hoping to break it. All that did was open the back so I could get the battery out. For a moment I thought all was well. But don't you know the sucker had a charge from having been plugged into the wall and was still emitting a wail, albeit a lower and less piercing one. Finally I tossed the darn thing into the trash. God help us all! Oh well, we met some cute firemen and policemen and had a laugh so I guess it wasn't a total loss, plus I found out my neighbor's age!
Wednesday, January 21, 2009
All of today's photo's were taken at Immaculate Conception Seminary located in Lloyds Neck, NY. This Seminary had been training Catholic Diocesan priests for over 75 years. It is is situated on the famous "Gold Coast" of Long Island on land that comprised two family estates back in the "Gatsby" days. Hand painted fresco's abound throughout the space. This particular one is located above the door leading into and out of the crypt chapel.
This is one of the stalls located in the crypt chapel. Each one is dedicated to a particular saint. The priests say private Mass in the stalls.
This beautiful rose window is hand made stained glass. It is located in the main chapel over the choir loft.
Tuesday, January 20, 2009
The frustration for me is that once again someone else's miscommunication has become my problem. When I went to the internist to get treated for the infection, he put me on antibiotics and made it clear he wanted the tooth pulled last Friday. This way I would still be on antibiotic, and have had most of the course of treatment. The dentist had told me he would make time for me whenever I needed because he wanted to pull it the minute I was feeling well, before another issue had a chance to crop up. (Let's face it, he knows my health history!) So I called the dentist's office immediately upon leaving the doctor and got someone new. I explained the whole thing to her and she scheduled it for today (4 days AFTER the doctor requested). I asked to change it, explaining again WHY and got nothing but attitude. In fairness to my dentist's staff, that isn't the usual experience with his office.
Last night I received a call confirming my appointment. I explained I needed to speak with the dentist because the infection has not cleared and I didn't know that we should proceed. I spoke with his assistant who was appalled that they hadn't seen me on Saturday. Of course, all of this is water under the bridge now. I was left having to get in touch with the internist's office this morning to get clearance and now am having the tooth pulled at 2pm, despite my own misgivings, because I know I am still sick. Again, the doctors won't have to suffer, I will. And add into this mix that I have medications that are taken at 3 pm with food, which obviously can't happen, so I will have to push them an hour ahead.
I am so sick of dealing with all of this. The trying to juggle too many health issues, medications, doctors and other issues. Add to all of this the snow we got again last night. My mother won't drive in the snow, and I understand her fear. She has been away from it for over 25 years and she feels she isn't competent to do it. I appreciate that she knows what her limits are. However, that means that I will be driving myself, in rush hour traffic, after having a tough extraction. Not exactly my favorite scenario.
Okay, well now that I have cheered everyone up with this positive post, is there anything else I can do to brighten your day?! :-)
Here's hoping things are going better for you and I hope my next post is much more upbeat!
Sunday, January 18, 2009
Friday, January 16, 2009
Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.
My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?
Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.
Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!
The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.
If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.
Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.
I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?
- - Maureen Hayes 2008 copyrighted
Thursday, January 15, 2009
On a less serious note, I had intended to write something on a quote I stumbled across today. . .
This got me to thinking about how I had been feeling lately, and how the kindness of others had literally rekindled my own flame. I am blessed to have my mother living with me, to have good friends (some of whom I have blogged about, but others who I may not have mentioned but who are dear to me), as well as countless of you in the blogosphere, who act as "kindlers" to my flame. Truly I cannot say how thankful I am for all of you. I think we never realize how much a small gesture or a kind word can make all the difference in the world to someone on any given day.
I saw "Nancy" last night, she is the friend who brought me to the book club I became a part of last night. I have posted previously about her, how we met and became friends, and her kindness and generosity of spirit. Today she read my blog for the first time and she called to say she was so touched by what I had written, but also that her actions had had an impact on all of you who commented. It meant a lot to her. If you aren't familiar with the story, please see my earlier post here.
I have been doing a lot of reading lately and have come across several books and authors I wanted to recommend. I have especially enjoyed a series by Patrick Taylor which include:
- An Irish Country Doctor
- An Irish Country Village
- An Irish Country Christmas
If you enjoy light mysteries, I have come across several series that are fun, quick, entertaining reads. They include:
- The Chocolate Snowman Murders: A Chocoholic Mystery by JoAnna Carl
- Hark! The Herald Angel Screamed: An Augusta Goodnight Mystery
- Doggie Day Care Murder by Laurien Berenson
In the midst of this reading I have been listening to playaway books ( for more on playaway books, see my earlier post here) when the vertigo makes reading impossible (or during renal scans, but that's another story!!). Currently I am listening to Dr. Nick Trout's "Tell Me Where It Hurts: A Day of Humor, Healing and Hope in My Life As An Animal Surgeon". I am looking forward to Pimsleur's Language Program on how to speak Irish in 8 easy lessons next.
Finally, my mother and I have been enjoying the DVD version of the BBC's series "As Time Goes By" starring Judi Dench and Geoffrey Palmer. It is delightfully funny and touching. Even my mother, who usually doesn't enjoy British humor or understand the accent, is enjoying this. The episodes are only about 30 minutes apiece, so they are easy to fit in a little at a time. I haven't laughed this much in a long time. Now that's good medicine!
Tuesday, January 13, 2009
On the brighter side, tomorrow evening I am going to my first book club meeting. My girlfriend has been a member of this book club for years and is bringing me. I even read the whole book, 'The Flamenco Academy' by Sarah Bird, so I should be able to discuss it. I am looking forward to meeting all the other women and having some discussion that doesn't deal with medical tests, doctors or prescriptions!
Tonight we finally got all the Christmas decorations and the tree down and away. The is the latest I have ever had things up. It couldn't be helped, but it was driving me crazy. I am still on antibiotic for the sinus and ear infection. If that clears up, I am due to finally get this tooth pulled next Tues. The pain is incredible and I hope it all happens. I am so sick of doctors, tests and the like. I cancelled an appointment on Monday morning because my vertigo made it impossible for me to drive. The doctor called because he was upset that I had cancelled on short notice. I have cancelled on him before and I guess he thought I just didn't want to see him. I wish these doctors could get a sense of what day to day life is really like for us. I have reached a point where I really try not to schedule more than one doctor a day. I just can't do it anymore, physically or emotionally. And of course, I have my mother living with me as well, so I attend her appointments as well as my own. That means that everyday we are at one doctor or another. All this and feeling poorly too.
I had wanted to participate in Wordless Wednesday this week, but alas, I don't think I will get a post up before the test tomorrow. If I feel well enough after I may try, otherwise, it will have to wait until next week. I miss all my Wordless Wednesday blogging buddies! It is fun to do something different and not focus on the health stuff.
Sunday, January 11, 2009
The American Pain Foundation and the National Fibromyalgia Association are committed to reaching out to individuals who live with pain. We are well aware of barriers to effective pain care that can be attributed to insurance company policies, no matter what the pain problem. APF and NFA have been provided a special opportunity to work on this issue and are first focusing on the pain care issues of those with fibromyalgia. In particular, we would like to know how delays or denials in insurance coverage impacts access to care.
In December 2008, APF surveyed its members in Maryland, Delaware, District of Columbia, Pennsylvania, Virginia and West Virginia as Phase 1 of the pilot project. As result of an overwhelming response to the survey, we are expanding the next phase of the project to a national audience. If you completed the first survey, we thank you and invite you to take part again to answer additional questions. If you did not have the opportunity to participate in the earlier survey, please take part now. Please feel free to forward this email to anyone you know with fibromyalgia.
APF and NFA invite you to share your insight on this topic by completing our online survey. This survey will be summarized and shared with you at a later date. Won’t you take just a few moments of your time and let us know more about your struggles with access to pain care? What we learn from you can help us continue this work for others who live with different pain problems.
Please complete our Insurance Barriers to Fibromyalgia National Survey now!
We wish you hope and happiness in 2009.Sincerely,
The American Pain Foundation and the National Fibromyalgia Association
The above is the e-mail I received, and I am asking all of you with Fibromyalgia to take the survey, and to pass it on to others who have this illness or are affected by it. This organization has the ability to make our voices heard and affect change. Thank you for your participation and help.
Wednesday, January 7, 2009
- The greatest glory in living lies not in never falling, but in rising every time we fall.
— Nelson Mandela
- She gives most who gives with joy.
— Mother Teresa
- For peace of mind, resign as general manager of the universe.
- Some people, no matter how old they get, never lose their beauty—they merely move it from their faces into their hearts.
— Martin Buxbaum
- Nature gives you the face you have at 20; it is up to you to inherit the face you have at 50.
— Coco Chanel
- Whoever is happy will make others happy too.
— Anne Frank
Those of you with chronic illness will understand. By it's very nature it flares up when it feels like it and there isn't always a lot that can be done other than wait it out. This time it really got to me emotionally. I was in a real blue funk for awhile and just didn't feel like posting when I felt like that. But, talking with a good friend made me realize that I needed to post, because that is the truth of being chronically ill. Not all times are good, we can't always think our way to happier times, and I would be being dishonest not to admit that I go to that place sometimes too. I write a lot about gratitude and self care, and I fully believe in both and practice them regularly, but I am not immune to bad times.
However, I am beginning to feel better, emotionally at least, and wanted to get back into the swing of things. I miss posting on Wordless Wednesday and Photo Hunt Saturdays and plan to get back to those this week or next.
I did have some fun over the holidays including:
- A day trip into NYC to look at the Rockefeller Center Christmas Tree and skating rink as well some of the store window displays. It was SO crowded the day we went in that it wasn't as much fun as I had hoped, but because I am a former city gal, I made a go of it anyway, taking my mother and friend on a tour of Grand Central Station, The Ford Foundation and Tutor City. Grand Central Station had a holiday laser light show on the ceiling in the main room that was a nice surprise treat.
- For my birthday a friend got us tickets to see "Oliver" at the John W. Engeman theater in Northport. The cast are all equity actors, so it really was Broadway caliber and we enjoyed it immensely. We went out to dinner after to celebrate my turning 42.
- I visited Old Bethpage Village Restoration for a "candle-light walk" with my upstairs neighbor and my mom. It is a village with original houses from the 1700 and 1800's and they had people in period costume at each location. They also had a huge outdoor bonfire, sing-a-longs, music on 18th century violins, as well as hot cider and cookies. It was a nice evening and luckily the weather cooperated.
- Local trips to see Christmas lights in the area. The neighborhood we live in really does it up right, and it was nice to walk (when weather and health permitted) or drive by, and see all the different displays.
- Midnight Mass on Christmas complete with the choir singing before for an hour - the highlight of my holiday for sure!
- Going to Hick's Nursery to see the Christmas displays and watching all the children ooh and aah over the animatronics display. They also had a brass quartet playing Christmas carols and gave bells to the little ones to play along. There is nothing as much fun as seeing Christmas through the eyes of a child.
- Going to see the tree and skating rink at Rexcorp in Uniondale at night.
- Spending time at my friends house after the holidays enjoying her family, good food and lots of laughs.
I talked in my last post about needing to take a break from doctors appointments. Unfortunately my break is over and I have been going to doctor's each day. I have so many things going on, so many tests happening at once, plus my mother to tend to so the days are full once again with that. I have had two appointments (yesterday and today) with new specialists who listened and are taking seriously some of the things that have been wrong for awhile now. It gives me hope. I am changing from the internist I had been seeing, who I had written I was so unhappy with, back to one I had seen years ago whom I had liked. I am hopeful this will lead to a better handling of my overall health situation.
My girlfriend talked me into signing up for a yoga class at our local recreation center. I have to be very careful because I hyper extend easily and injure myself, but I am going to give it a try. I won't be able to do what everyone else can, but I will do what I can.
I don't believe in New Year's resolutions. I try my best throughout the year to take care of myself and improve in ways I can. Each time I fall down, I pick myself up and try again and that's good enough for me. I find the pressure of resolutions usually makes me fail, but just aiming to improve my health or outlook is more manageable, for me anyway.
I will post some photos of some of the fun stuff in the next day or so. I appreciate everyone who visits and reads my blog and the patience you show when I am away for an extended period of time. I hope that everyone had a good holiday season and that the New Year is starting off on a good note. I know the holidays are always a mixed bag for me. The religious part and the spirit of Christmas that brings out the best in others always makes me happy, but at the same time I also feel a sadness for those who aren't here. Let's just say I am happy to be in January and especially past my birthday.
Speaking of birthdays, I know I will get some heat for this, but I want your comments so I am bringing this on myself. . . when did we stop sending paper cards or calling someone for their birthday and begin thinking it is okay to e-mail or send just an e-card? I was offended at how many people took this way out. If it was a money issue, I would be understanding, but those that did it weren't the ones who are struggling financially. Am I the only one who thinks that a card or call is still in order?
Thanks again for allowing me to be real here, even when the reality isn't pretty. It helps to know that there are others who struggle and get through the bad times too. Blogging and meeting so many great people through it, has been a huge blessing. Well, I have rambled enough for one post - see ya again soon.