Monday, December 22, 2008
I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?
The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.
Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.
So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .
My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!
Thursday, December 18, 2008
I gazed round the room and I cherished the sight.
My wife was asleep, her head on my chest,
My daughter beside me, angelic at rest.
Outside the snow fell, a blanket of white,
Transforming the yard to a winter delight.
The sparkling lights in the tree I believe,
Completed the magic that was Christmas Eve.
My eyelids were heavy, my breathing was deep,
Secure and surrounded by love I would sleep.
In perfect contentment, or so it would seem,
So I slumbered, perhaps I started to dream.
The sound wasn't loud, and it wasn't too near,
But I opened my eyes when it tickled my ear.
Perhaps just a cough, I didn't quite know, Then the
sure sound of footsteps outside in the snow.
My soul gave a tremble, I struggled to hear,
And I crept to the door just to see who was near.
Standing out in the cold and the dark of the night,
A lone figure stood, his face weary and tight.
A soldier, I puzzled, some twenty years old,
Perhaps a Marine, huddled here in the cold.
Alone in the dark, he looked up and smiled,
Standing watch over me, and my wife and my child.
'What are you doing?' I asked without fear,
'Come in this moment, it's freezing out here!
Put down your pack, brush the snow from your sleeve,
You should be at home on a cold Christmas Eve.'
For barely a moment I saw his eyes shift,
Away from the cold and the snow blown in drifts.
To the window that danced with a warm fire's light.
Then he sighed and said 'It's really alright
I'm out here by choice, I'm here every night.'
'It's my duty to stand at the front of the line,
That separates you from the darkest of times.
No one had to ask or beg or implore me,
I'm proud to stand here like my fathers before me.
My Gramps died at Pearl Harbor on a day in December,
Then he sighed, 'That's a Christmas Gram always remembers.'
My dad stood his watch in the jungles of 'Nam'
And now it is my turn and so, here I am.
I've not seen my own son in more than a while,
But my wife sends me pictures, he's sure got her smile.
Then he bent and he carefully pulled from his bag,
The red, white, and blue. . . American flag.
I can live through the cold and the being alone,
Away from my family, my house and my home.
I can stand at my post through the rain and the sleet,
I can sleep in a foxhole with little to eat.
I can carry the weight of killing another,
Or lay down my life with my sister and brother. . .
Who stand at the front against any and all,
To ensure for all time that his flag will not fall.'
'So go back inside,' he said, 'harbor no fright,
Your family is waiting and I'll be alright.'
'But isn't there something I can do, at the least,
Give you money,' I asked 'or prepare you a feast?
It seems all too little for all that you've done,
For being away from your wife and your son.'
Then his eye welled a tear that held no regret,
'just tell us you love us, and never forget.
To fight for our rights back home while we're gone,
To stand your own watch, no matter how long.
For when we come home, either standing or dead,
To know you remember we fought and we bled.
Is payment enough, and with that we will trust,
That we mattered to you as you mattered to us.'
LCDR Jeff Giles, SC, USN - 30th Naval Construction Regiment - OIC, Logistics Cell One, Al Taqqadum, Iraq
This is what was asked of me: "PLEASE, would you do me the kind favor of sending this story to as many people as you can? Christmas will be coming soon and some credit is due to our U.S. Service men and women for our being able to celebrate these festivities. Let's try in this small way to pay a tiny bit of what we owe. Make people stop and think of our heroes, living and dead, who sacrificed themselves for us."
I am proud to post this and hope you will read it, share it, and say a prayer for our soldiers this Christmas.
Wednesday, December 17, 2008
My mother and I moved into our house in the beginning of October this year. Before moving here we were living in an apartment building, where we were very unhappy, and had a lot of trouble with the lack of maintenance, brown water, and loud and mean neighbors. We found an ad for our current house and had come to look at it. The landlord had explained on the phone that the reason the house was available for rent was that the elderly couple who had been living here had been killed in an auto accident a few months prior. The night we came to see the house, one of the daughter's of the previous tenants was here cleaning up. I'll call her Nancy. Well, as you can imagine, Nancy was upset. She had lost both her parents suddenly only a short time ago. Her son was with her as well. He is a wonderful 8 year old boy I'll call John. Instead of looking at the house, I spent most of my time here that night talking to Nancy about her parents. She told me how happy they had been here, how good the landlord had been to them and how she and John lived nearby and used to ride their bikes over almost every day in the good weather to visit her parents. I hugged her as she cried and told her that she and John would always be welcome here. I think that made her feel a little better, she wouldn't have to give up the last touchstone to her parents she had. We exchanged phone numbers and promised to keep in touch.
My mother and I did take the house and just before we moved in, I got a call from Nancy. She wanted to know how we were doing. My mother had just been in the hospital, I was stressed from trying to pull together the move in less than 2 weeks and we were ready to be out of that awful apartment. Nancy promised to be in touch after we got settled in.
The day of our move, Nancy showed up at our door with a basket filled with goodies. There was a loaf of Irish Soda Bread (my favorite!), a box of chocolates, a map of the town, a local newspaper and several other helpful things. She and John delivered it to our door, along with a card welcoming us to our new home. What a change from where we had been living! I was so touched, not only at her thoughtfulness, but I knew all she was going through in her grieving and felt it was especially kind that she reached out to us in her own time of grief and pain. I was also grateful to have a new friend so soon after moving in.
We spoke on the phone several times, but it took us almost a month to get together. Both of us had busy schedules. We met one morning for tea and scones. We started chatting like old friends and found we had much in common. Unfortunately one of the things we share in common is endometriosis. While I was sad to know that Nancy had suffered and struggled to have John, I was glad to meet someone who "gets" what having a chronic illness is like. She is a nurse and works in a local hospital. What a blessing for the patients she deals with, she is kind and compassionate, having firsthand experience with pain, illness and loss.
During our talk I mentioned that mom and I didn't have a Christmas tree. We had an artificial one when we lived in North Carolina, but when we ended up in an apartment in New York, with nowhere to store it, we hadn't moved it up. Money was too tight this year to even think of buying a tree, real or artificial, so we had decided we would be without one this year. I knew it was the right choice, but it did make me a little sad, I mean I love having a tree. Immediately Nancy offered us a tree. They have a small artificial tree that they had used in the past down in their basement as an extra tree. Last year her parents had used it in this house. She wouldn't be having Christmas at her house this year (they are going to her sisters) so she wouldn't be putting the little tree up anyway. Would we like to borrow the tree? I was so touched. It was like an answer to a prayer. She brought the tree by just after Thanksgiving and it sits decorated and lit up in my living room as I type this. It is perfect for this house, only about 4 1/2 ft. high, we have it up on a box. Not only did it make us happy, but I know it made Nancy feel better about the holiday too. Just the week before we had gotten together she and her husband were going through things in their basement and had come across the tree. He had asked if they would be putting it up this year and she had said no, and had thought sadly about her parents. Now her tree stands once again in the same house as last year, albeit under very different circumstances, and blesses another family with the love and kindness that Nancy learned from her parents. I can tell her parents were happy here, you can feel it in the house. I know that may sound hokey to some, and I never thought I would say a thing like that, but this house has a happy vibe, something our apartment certainly didn't.
I feel blessed to have met Nancy, and although I wish the circumstances had been different, I know her parents are looking down from heaven and watching this friendship grow - helping both of us in different ways!
Again I am reminded how blessed I am. Blessed to have this friend, blessed to live in this house and still have my mother with me, blessed in the health I DO have. It's a small thing to have a tree, but it has big meaning to me, and Nancy could see that and she responded in love and generousity when she could have hid in grief. I hope I am as good a friend to her as she has been to me.
I've written a lot of posts lately on the little things we can each do to help someone else. This is another example of something that didn't cost any money, but couldn't have been more priceless. When we take the time to listen to people, we often find what they need most isn't even a "thing", usually it is someone to care about them. Maybe you have an elderly neighbor that would welcome a visit from time to time, or who needs a ride to church or the store once in a while. Maybe you have a working mom who could use a few hours of childcare to get some shopping or gift wrapping done.
In the past week I have done several small acts of kindness that didn't cost me anything. We had our first snowfall last weekend. When I went out to clear off my car, I cleared off the car of my upstairs neighbor as well. This way when she came down, she could just get in and go. It only took me about 5 extra minutes and it made her day easier. Yesterday my mother had a doctors appointment. When we arrived at the office, there were 2 ladies that my mother has met through the local senior center. They were finished with an appointment and were asking the receptionist to call them a cab. I offered to drive them home instead. My mother was going to be back in the doctors office for awhile, and instead of sitting in the waiting room, I took them home and came back for my mother. It took me about 15 minutes in total and saved them at least $10. Surely we can all do small things like this for others.
I want to close by saying that each night as I look at our tree, I say a little prayer for Nancy and her family, for their friendship and kindness to us. And I am trying to honor it by passing it on.
I had a comment from a reader in response to a post from back in October about CVS drug stores carrying the magazine Fibromyalgia Aware - she hasn't been able to find it in her store and when she asked the staff they knew nothing about it. I directed her to the 800 number for CVS as well to FMAWARE.org (the publishers), but I am wondering if anyone else has had a problem getting a copy. I bought my Fall issue as soon as they went on the stands, but I am wondering since it is a quarterly publication if they only ordered a small batch to see how sales would be. If anyone else has any experience with this, good or bad, and could share it, I would appreciate feedback. Thanks!
My mom had her colonoscopy last Thursday. Other than enduring the night before with the prep, things went pretty well. At this moment the C-Diff appears to be gone (although we've been told that before only to have it reappear!). they took some biopsies to make sure they aren't missing anything important, and when she goes back in a few weeks we should have a more complete answer as to what has been going on with her. I want to thank everyone who has asked about her and also sent prayers and good wishes.
I have an appointment on Friday with the urologist to see if there is anything to this mild nephritis finding on my CAT scan. My GYN is concerned that with my history of endometriosis and adhesions, there is the possibility of an adhesion causing a kink or blockage, which could cause nephritis. Of course, never being able to be the simple patient, I am allergic to contrasts and dyes needed to do studies, so we will have to see what the urologist recommends as the next step and proceed from there.
I have been in a "if I have to see one more doctor I am going to scream" mood, so I have put off getting in touch with several other specialists I need to see. I know it isn't a long term solution, I just want to get through the holidays and my birthday without having 2 or more appointments each day! Between mom and I it feels like it is all we ever do anymore.
We did have a pleasant day on Sunday. After Mass we headed over to a nursery that does a lot of decorating and such for Christmas. It is called Hicks and I hadn't been there since I was a little girl. They have a small area with animatronics that you walk you through, different Christmas scenes. It was fun to watch the children as they looked and "oohed and aahed" at Santa or snowmen or penguins. Many parents had their kids dressed up because there are lots of good places to get those all important Christmas card photos. My mother and I both enjoyed watching the little ones enjoy themselves. There was a quartet set up in the middle of the greenhouse and they were playing Christmas songs. They had brought along all sorts of bells that the kids could pick up and play along with. What fun to watch a little toddler shaking the bells and singing "Frosty" or "Jingle Bells".
We came home and had a bite to eat before heading out to a local parish for "Lessons and Carols". The choir at St. Anne's in Garden City is amazing and it was so nice to hear the scripture readings and then the songs. We met up with some friends there and it was fun to be together and celebrate the real meaning of the holiday. After dinner we headed over to the Rexcorp tree and ice rink. For those of you not familiar with the area, it is Long Islands answer to Rockefeller Center. The tree is even bigger than the one in NYC and there is an ice skating rink as well. They decorate the inside of the office buildings, although this year that part was rather disappointing. It was a cold night, but we enjoyed watching the skaters and looking at the gorgeous tree. We came home in time to catch HGTV's special on Christmas windows 2008. I was walking to shut off the lights and caught my little toe on the coffee table and broke it! OUCH!! I am still hurting and limping. It was so stupid, but these things happen. Except for that, it was a nice day.
I am still having a lot of pain in what I originally thought was my tooth, but it turns out to be my ligament in my jaw. There is either an infection or perhaps a crack in a tooth. My dentist had me do a round of antibiotics, but I am still really hurting. It never ends when you have autoimmune problems, one thing just leads to another. I am also slowly decreasing my dose of hydrocortisone, so I have had some issues with that as well.
Overall it has been such a good holiday season compared to last year that I can't complain even with all that is going on. I encourage you all to find fun, free and meaningful things to do that will bring you into the true reason for the season. Today we went to the local elementary school for their holiday concert. Seeing those sweet little ones singing, playing instruments and enjoying themselves really gave my spirits a lift and brought me back to the wonder of being a kid again. Be grateful for all you do have in these tough economic times (my landlord finally got us a new stove - YEA!!!), and pray for those who aren't as fortunate. Right now there are so many good ways to help, even just offering to drop food off if you can't afford to donate a whole meal, sending a card to soldier in Iraq or Afghanistan or at Walter Reed as I had posted about earlier. You don't have to spend a lot to help. Heck, give someone a genuine compliment, we are all so harried and hurried this time of year it will make their day!
Thanks for reading my blog and for caring about me and my family. I will post some pictures of the tree so you can all see what that looked like. This weekend I am due to go into NYC to see the Rockefeller Center tree and the Christmas windows. If my toe allows it, I plan to get as many pictures as possible and share them here for those of you who don't live close enough to get to see them in person!
Friday, December 12, 2008
Renee from Renee's Reflections awarded me the Superior Scribbler award. Thanks Renee. I am to pass it on.
Here are the rules for the blog:
- Each Superior Scribbler must in turn pass The Award on to 5 most-deserving Bloggy Friends.
- Each Superior Scribbler must link to the author & the name of the blog from whom he/she has received The Award.
- Each Superior Scribbler must display The Award on his/her blog, and link to This Post, which explains The Award.
- Each Blogger who wins The Superior Scribbler Award must visit this post and add his/her name to the Mr. Linky List. That way, we'll be able to keep up-to-date on everyone who receives This Prestigious Honor!
- Each Superior Scribbler must post these rules on his/her blog.
- LEMON-AIDE - consistently the best writing, the most uplifting and the most caring blogger I know!
- Dottie - an inspiration for her candid thoughts and proof that you are never too old to start blogging or following your dreams.
- Rhymes With Migraine - Not only encouraging for those with chronic illnesses, but also showing us how to handle big things (like lay-offs due to the economy) with grace.
- My Chronic Life - one of Connie's several blogs. I wouldn't be blogging if it weren't for her support, guidance and help. She has been a true friend all along the way. Each one of her blogs offers something special and different and I encourage you to check them all out.
- Notes From One Mom - Terry is a wonderful writer with a vast wealth of life experiences she draws upon to blog about. It is always a treat to visit her blog.
This is a photo of santa, my mom and I at Westbury house. I have to tell you, I think this is the real Santa, he takes you on a tour of each room and has stories about his elves and which room they sleep in, where they make the toys, etc. . . He is as entertaining for the adults as he is good with the kids.
This is an "after" shot of the tree with Santa and all the local dignitaries. They really did a nice job of putting this event together. After you finished the carriage ride you got a goodie bag filled with stuff from all the local merchants. There was also hot cocoa and cookies to warm you up, and the local tv station had us all taping holiday greetings to air the week of Christmas!
This was a "before" shot of the tree. It was pretty even before it was lit. Not a huge tree, and not overly decorated, it makes a nice statement.
Last but certainly not least, the horse drawn carriage that took us through the neighborhood to look at the lights. The carriage was pretty comfortable and we had enough people on each trip to snuggle up and keep warm. The horses were so beautiful. We donated a toy for a tot to take the carriage ride, which made us feel good and hopefully helped some local kids have a better holiday! Only a few hours after this it snowed for the first time this year. The only thing that could have made it better was if it had snowed during our ride!
Tuesday, December 9, 2008
A Recovering American Soldier
c/o Walter Reed Army Medical Center
6900 Georgia Avenue NW
Washington, DC 20307-5001
Sunday, December 7, 2008
Be thankful that you don't already have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don't know something,
for it gives you the opportunity to learn.
Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.
Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you're tired and weary,
because it means you've made a difference.
It's easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles,
and they can become your blessings...
This is true for everyone, but especially important to remember when you battle a chronic illness. I know that I have learned so much through this journey that I might never have learned, and although I don't enjoy being ill, there are positive things that have come from it. I have met some wonderful people, both on-line and in "real" life. I have learned about talents and strengths I possess that I never knew I had. I have let go of perfectionism as my ideal.
I am heading into a challenging week. I have several doctors appointments, which have me worried. My mother has had continuing difficulties with her health since developing C-Diff back in August in the hospital. They are doing a colonoscopy on her on Thursday morning, so we have the prep to get through on Wednesday and then her test. I pray they can figure out what is wrong so she can get some relief. I have a new specialist on Friday for a possible problem with my kidneys. It never ends. So I need to re-read my own post and learn to take the challenges and change them into growing experiences! That doesn't mean I won't ask for your prayers in the meantime though. . .
Saturday, December 6, 2008
This is another reason I really enjoy living here, they have fun events like this all the time, they are free, and everyone in the area participates, so you get to meet new people while doing something different. The only thing that could have made it more perfect was if it had snowed a little, but it still had a nice postcard quality to it. I will post some pictures from it tomorrow.
Friday, December 5, 2008
I love everything about books, the feel of one in my hands, the cover art, the different fonts, the crisp pages, even the smell!! However I am grateful that these other options have become available for those times when I can't read a book for myself. I just discovered another wonderful option that I wanted to share with all of you. I was at the library yesterday and was walking past the books on CD section when I noticed something different. I stopped to investigate and saw that they have "playaway" audiobooks. Not sure what it was, I picked one up to investigate. This is the description from the cover "Playaway is the simplest way to listen to an audiobook on the go. Each Playaway comes pre-loaded with an audiobook, and batteries are included. Simply plug in earphones and enjoy. No cassettes or CD's. No downloads. there's nothing left to do but listen." What a terrific idea! They are like tiny little MP3 players and my library had an impressive selection of titles to choose from. I could learn a foreign language, read the latest bestseller or find almost any non-fiction subject that might interest me. I had no idea these existed! I knew I could download books from the Internet to my IPOD, but of course there is a charge, and it takes time, and sometimes the narrators are better than others. This is all done and ready to go, all I need to provide are the earphones, and since I can get them at the library, they are free!
Maybe you already know about them, but if you don't, they are definitely worth a look. I don't ever want to discourage people from actually reading books, I still think it is the best way to enjoy a story and to exercise your own imagination, but if health or time is an issue, this is a great tool! I immediately thought of what a terrific gift these would be for someone in the hospital or home bound. I had a dear friend who had to have surgery on her eyes for macular degeneration and wasn't allowed to lift her head for several weeks after surgery. This would have been a God-send, and a much more pleasant way to pass the time than just listening to the TV.
Anyway, to me, it was just one more reminder that no matter how "limited" I think I get by my illness, there is always a way around things. I am grateful that I have a library that carries these, as I imagine it could get expensive to buy them all the time. Please consider looking into them for yourself or as a gift for someone else! Happy Holidays!
Thursday, December 4, 2008
Well, I promised I would follow up on this, and I have to admit, I hadn't done it yet. I fully intended to, but life and illness had prevented it so far. Guess what came in the mail? You're ahead of me already aren't you? I suddenly received my voter registration card. Isn't that interesting? Suddenly I am registered to vote in my appropriate district, now that the election is long passed. Since the undecided voter was supposed to make such a big difference in this past election, I fully believe that my application was held back on purpose so that I would be prevented from voting. Now I definitely intend to follow up with my local board of elections and see how they explain this delay. I will keep you all posted.