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.
Saturday, November 29, 2008
I pray for all the souls who were murdered in India, for those injured and for the friends and families of all the victims. I even pray for the terrorists, which I know some of you will hate, but you see we are all made in God's image, so it HIS place to pass judgment, not mine. Of course I hate their actions, and I won't even try to defend them, but I don't get to know what happens, only God does.
I'm reminded of how things felt here after the attacks of Sept. 11, 2001. How scared we all were, how for a brief time we all pulled together as one. I had hoped it would last longer than it did, I hope it will for India.
Christmas is coming, the day, that if you are a Christian changes everything. I can't and I won't let that be taken from me. There is too much good in the world to let the bad and evil win. I hope that we will all remember as we head into these holidays that they aren't about gifts, parties and food, not that you can't celebrate with those things - but you shouldn't allow those things to start to mean more than what Christmas does.
In these desperate economic times, look into your heart and see what you are capable of this season. Can you afford to help a charity out, whether it is financially or with your time? Can you afford not to? None of us makes it on our own, we all have help and support from someone. We have the chance to be that someone, that is a gift and a blessing. Share yourself this holiday season, you won't regret it. You'll never give without receiving!
Thursday, November 27, 2008
Last year at this time, I really didn't think I would be alive at Christmas, and I am so thankful for all that has happened (the good and the bad) this year, and that I still here! I am thankful for my mother, my friends, my God and each and every day I am given.
Have a wonderful day!
Tuesday, November 25, 2008
People complained about this shot because the beetle is bad for the flower - I didn't put him there, I just photographed him!
I wanted to delete this one and didn't know how. . . still learning to blog!
Hope you enjoyed this week's version of Wordless Wednesday, please take the time to sign in below and leave a comment! THANK YOU and HAPPY THANKSGIVING!
Monday, November 24, 2008
Anyway, I am still awaiting an answer on my thyroid biopsy (taken last Wed.) and have a few other critical health issues going on. Despite those things, I had a nice weekend. I met a funny, smart, kind woman who has become a new friend since moving to our diggs in October, and we got together on Saturday for tea and scones. She then took me around town and showed me where there are some great shops I didn't know about. It is so wonderful to live in an area where the people are friendly and kind, especially after where we've been living for the past year.
Saturday evening mom and I had a friend over for pizza and a movie (hey in these economic times a movie from the library and a pizza is a big night!). We watched one of my all time favorite film noir classics "Double Indemnity"! I never tire of a great film with snappy dialog and witty banter.
Sunday we tried a new parish close to home for Mass, which was very good. They just refurbished the church and it looked beautiful. After Mass, despite the freezing temperatures, we took a nice walk. I had promised my mom that I would bring her over to the area my friend had shown me on Saturday and let her see some of the shops for herself. We both love 5 & 10 cent stores (variety stores, whatever you call them where you live!). They have become a lost breed and I was so excited to discover one right here in town. We spent a good amount of time just browsing in there and discovering all the neat stuff they carry that you can't find anywhere anymore.
I've been a bit frustrated lately, between doctor's appointments and dealing with pharmacy and cable issues and the frustrations of living life with so many chronic illnesses, it's had me down. It was nice to have a weekend away from all that, with friends and family. Of course now I am paying (physically) for the activity, but once in awhile you've got to push yourself and pay for it later. I am suffering from vertigo, so I can't read or write a long post. Hopefully it will be a short bout this time.
So that's what new in my neck of the woods, what's up with YOU? I really want to know. . .
Wednesday, November 19, 2008
It is my pleasure today to present a guest post written by Rosalind Joffe, co-author of "Women Work and Autoimmune Disease: Keep Working Girlfriend!". Rosalind, president of cicoach.com, a resource for professionals with chronic illness, is a chronic illness career coach. In addition, she is also a chronic illness patient herself, so she has a unique understanding and perspective on the subject of working and chronic illness.
This guest post is part of Ms. Joffe's virtual book tour, which started on Nov. 3, 2008 at Rhymes With Migraine and has included guest posts, interviews and book reviews related to her new book. For more information on all the stops of the tour, or to purchase a copy of Rosalind's book, please visit her website at cicoach.com.
Chronic illness makes it impossible to keep working. You've hit the wall. Clearly you've got to do something different, but what?
Maybe you stopped working to get your mental, physical and psychic energy back. But when (and if) you're ready to return to work, are you asking yourself: if I couldn't do that job before, what makes me think I can do it now? What if nothing has really changed? The same symptoms that get worse and better over time are still there. Add the repetitive stressors you had at work and you know you'll be out of work again.
This is a pretty typical scenario for people with debilitating chronic illness symptoms. It's tough to give up a career track, especially when you've put time, energy and money into training and developing skills.
When you can't use your skills (e.g., a plastic surgeon, has multiple sclerosis and has numb fingers) or you can't do the jobs that are available for people with your skills (e.g., a day care center manager with severe chronic asthma and can't be around young children), you might feel hopeless about ever working again.
I describe the value of work in my book, Women, Work and Autoimmune Disease: Keep Working Girlfriend! I've learned that although I live with with multiple sclerosis, I need to work. Yes, for financial reasons, but primarily, for the mental stimulation and emotional reward. I worked even when it meant recasting my skills in a different arena and drastic pay cut.
For some, working may be an impossible task. For many, however, working is an option if only we think about it differently. Think differently about the salary you need, the amount and degree of responsibilities you accept, and your life goals, you're more likely to develop a new career that allows you to be more than just your illness.
This isn't a simple thing to do. It requires you take a strategic, long view. It's also helpful if you can develop your capacity to live with hope (which I describe in detail in chapter 9 of the book).
I do have a suggestion for how to approach this. Figure out what engages you and you like to do. "Finding your passion" is a popular idea but I think that's a bit extreme. Most of us can be satisfied by what is interesting and even compelling. When you put your limited time and resources toward stuff that really makes you rock, you're more likely to be good at it.
And, getting very good at what you do is key. Being good at something (that you CAN do) makes you marketable. Any kind of work that creates new opportunities and improves your skills is good work at this point. Don't be distracted by the pay for now (unless, of course you've got a higher paying job offer that you can do).
Just focus on asking yourself: Do I like this and can I do it? Let's face it, chronic illness symptoms are a disadvantage. But when you get very good at something that you CAN DO, you've created an advantage for yourself.
Please be sure to check all the stops on the virtual tour, as each post and interview will give you more insight into Rosalind's book. Tomorrow Rosalind will be posting on The ICIExperience, so be sure to check out what she has to say there as well. Thanks for the post Rosalind, and good luck with the rest of the tour!
Thursday, November 13, 2008
Without further ado, here is the entire post:
Thursday, November 6, 2008
Thursday Thirteen: My Husband, My Hero
This is the month when giving thanks is on our minds. Having almost lost my husband more than once in the past thirteen years, I am grateful for every single day that he is still with us. He is my hero and here are my top thirteen reasons why.
1. He is a survivor. He survived rheumatic fever as an infant, polio as a child, 3 heart attacks before he was 50 and a stroke before he was 60.
2. He doesn't know the meaning of "can't." In between his childhood ailments and his adult illnesses, he played baseball, hockey, college and professional football. He even ran the Marine Corp Marathon when he was 40.
3. He never, never gives up. No matter what life throws at him, he is always positive. His first words after his stroke were, "I love you." His next sentence, although it took 3 days to compose and several minutes and some coaching to voice, was, "It's going to be alright."
4. He is a funny man. He loves to make people laugh. Nowadays he doesn't tell the jokes but he will still appreciate and laugh at yours.
5. I came into his life as a package deal, complete with three sons. He has loved them, helped to raise them, disciplined them, guided them, supported them in the good times and not so good times, and has always, always been there for them.
6. He is driven. Probably a little too driven at times, but that determination is now what enables him to deal with his disabilities on a daily basis. It's what got him walking after his stroke. It's what got him out on the golf course again with a one-arm golf swing. It's what gets him going every single day.
7. He is a supporter to those around him, whether it be me, our children, friends or neighbors, he always encourages those around him to succeed.
8. Not a day goes by, probably not more than a couple of hours, that he doesn't tell me how much he loves me and appreciates me.
9. He is the designated dishwasher loader/unloader in the family. And if I ask him, he will also do floors :)
10. Since his stroke in 2004, he had tried unsuccessfully to read a book - until this summer when he read the New Testament. He worked at it every single day and was as excited as a child who had mastered riding his first bicycle when he finished.
11. He loves life. Although much different than it was or than he expected it would ever be, he is content.
12. He notices and appreciates the details. Coffee and freshly baked muffins, a drive around the island, a walk on the beach, he takes pleasure in the small things that others often take for granted.
13. Last, but not in any way the least, he loves the Lord. And he knows the Lord loves him.
Posted by One Mom at 1:02 AM 6 comments Links to this post
Labels: giving thanks, husband, stroke survivor, Thursday Thirteen
Tuesday, November 11, 2008
One of the things I am thankful for is living in an area where the trees change color each Fall. Nature puts on such a beautiful display, and all I have to do is sit back and enjoy it. In honor of the end of that season, I present my fall colors for you to enjoy from the privacy of your very own room!
I’ve played a lot of roles in life;
I’ve met a lot of men;
I’ve done some things I’d like to think
I wouldn’t do again.
And though I’m young, I’m old enough
To know someday I’ll die,
And think about what lies beyond,
Beside whom I would lie.
Perhaps it doesn’t matter much;
Still, if I had my choice,
I’d want a grave ‘mongst soldiers when
At last death quells my voice.
I’m sick of the hypocrisy
Of lectures by the wise.
I’ll take the man, with all his flaws,
Who goes, though scared, and dies.
The troops I knew were commonplace:
They didn’t want the war;
They fought because their fathers and
Their fathers had before.
They cursed and killed and wept—God knows
They’re easy to deride—
But bury me with men like these;
They faced the guns and died.
It’s funny, when you think of it,
The way we got along.
We’d come from different worlds
To live in one no one belongs.
I didn’t even like them all;
I’m sure they’d all agree.
Yet I would give my life for them,
I hope; some did for me.
So bury me with soldiers, please,
Though much maligned they be.
Yes, bury me with soldiers, for
I miss their company.
We’ll not soon see their like again;
We’ve had our fill of war.
But bury me with men like them
Till someone else does more.
--Charles R. Fink (Vietnam 3/69-3/70, 199th LIB)
Monday, November 10, 2008
I am thankful to Jeanne, of Jeanne's Endo Blog for awarding this blog the Lemonade Award!
This award is given to blogs demonstrating a attitude of gratitude.
Jeanne's Endo Blog is full is full of practical, helpful information-not just on endometriosis, but on a variety of chronic illnesses and other topics. Jeanne is a dedicated, thorough and tireless advocate, whose passion is an inspiration. She consistently writes thought provoking articles that touch many and I am very honored that she has chosen this blog to receive this award!
In keeping with the awards tradition, I will now honor 10 other blogs with the lemonade award, as follows:
1. Getting Closer To Myself
2. My Chronic Life
3. Renee's Reflections
4. Harvesting Hope From Heartache
5. My Life Works Today
6. Notes from One Mom
7. Life in the Autoimmune Lane
8. Rhymes With Migraine
9. Daisy The Curly Cat
10. Rambling & Writings
Friday, November 7, 2008
Okay, now if this doesn't make a girl feel bad about herself, what will? Who do you think this is with me?
Recently we were given the prompt 'another choice' and this is what I wrote:
Sometimes I feel like if I am faced with another choice I will scream, really lose it completely. When did life get so complicated? Why do I have over 800 channels and yet still nothing on TV that I want to watch? When I go to buy an item on the Internet, why do I get 46,344 matches to wade through? I long for a simpler time, when my biggest decision was chocolate or vanilla. What other people seem to revel in as an abundance of choice, just leaves me feeling overwhelmed and exhausted. Let someone else choose, I'm sitting this one out.
It certainly isn't my best piece of writing, but I share it with you here because I seemed to have hit a nerve, it got so much response from the class. Everyone seems to have that same overwhelmed feeling, and I am wondering what you think?
On another topic completely, I want to remind everyone that Rosalind Joffe's virtual book tour began this week. Follow her through the week at these blogs:
Rhymes With Migraine
Somebody Heal Me
Much To My Sjogren
How To Cope With Pain
There are guest blogs, interviews and answers to readers questions. All of the posts will give you a better idea of what the book, and Ms. Joffe, are all about. And remember, Rosalind will be doing a guest post here on Nov. 20th as part of her virtual tour, so please come back and check that out as well.
Thursday, November 6, 2008
Then I got a phone call that changed everything. I haven't posted about this before so I need to give you some background information. I am the youngest of four children. My oldest brother, Bob, who is 51 yrs.old, has always been my "big" brother. He was the one who looked after me when I was younger, who chased the wrong kid down the block and threatened to kill him for slapping me so hard he left a hand print on my back when I was 8 years old. He helped me through our parents divorce, my teen years and first starting out on my own. He didn't always like all my choices, but he had my back and I knew it.
This January, while I was going through the battle of my life health-wise, and mom and I were basically homeless trying to get re-established here in New York with doctors, a place to live, etc. . my big brother suffered a heart attack. His wife, knowing we had a lot going on didn't call right away. They told her he was going to be fine, they put a stent in and he would be home by the weekend, they'd call us then. But he wasn't fine. He developed something called A.R.D.S. (Acute Respiratory Distress Syndrome) and lapsed into a coma before we even knew what had happened.
It would be over five months before he battled his way out of that coma. The doctors and nurses weren't hopeful he'd make it, even less that he recover to any degree if he did. He was on a ventilator, dialysis, feeding tubes and was paralyzed for his own protection. When we visited he had so much equipment hooked up it was hard to find a place you could touch him. He was bloated beyond recognition from the medications and the infections.
My brother is a wonderful husband and father to two boys, one who finished his senior year during all of this, and the other who is in middle school. His wife spent the first 6 months traveling over 2 hours each way everyday no matter the weather to be there with him. She never gave up hope, no matter how heartless or cruel the staff at the hospital or rehabilitation facility were. Mom and I went to visit as often as health would allow, usually every other day. It was grueling and painful.
Finally, about a week after Easter he woke up from the coma. He couldn't speak, eat, move and had no idea what had happened, but he was back. Eventually he was moved to a rehabilitation facility closer to his wife and kids, where he has remained since early June.
This afternoon the phone rang and it turned out to be my brother (we have never been able to speak with him on the phone, he couldn't hold it or dial it!). He will be going home in a few weeks!!! He won't ever be the way he was before all this happened, BUT HE IS GOING HOME!! My big brother will finally get to be with his wife and kids, back in the home they have built for 27 years together, through the good and the bad.
My very good friend, who also happens to be a priest, says there is no such thing as coincidence, that coincidence is merely God choosing to remain in the background. Well, thank you God for using BlogBlast For Peace to bring Bob home! I ask for everyone who reads this to please pray for my brother and for his family, they have a long road ahead of them. They have financial problems beyond telling, physical hurdles and adjustments we can't even know of yet--but Bob is not only alive, he is well and my heart is filled with joy and yes, PEACE!
Tuesday, November 4, 2008
We showed up to vote, and mom is on the rolls, I am not. Despite having copies of my change of address, new lease, etc... I was told I would need to fill out a paper ballot that might be counted later in the night or to call or go to the local Board of Elections. I choose to leave and drive the 4o mins. to my old polling place to vote. I honestly didn't believe that if I filled out a paper ballot it would get counted, and my vote matters to me. For the first time when registering to vote, I choose not to affiliate with any party, and I can't shake the sinking feeling that it may have had something to do with me not appearing on the rolls. The undecided vote is supposed to be a big factor in this election. My mother did choose a party affiliation, and she did appear on the rolls.
I am just grateful that this move was a local one and I was able to get to an old polling place and still vote. My last two moves have been from state to state, so obviously I wouldn't have been able to get back there to vote.
I plan to contact the Board of Elections after the election is over to check into the status of my registration and make sure it gets straightened out. I wonder how many other people will have problems when they try to vote today?
Monday, November 3, 2008
I try to be upfront with people about my illness. I find it makes it easier to find out right away if they can handle it or not, because frankly I have reached a point in life where I just don't have the time or energy to waste on those who can't understand. I recently moved (as I blogged about earlier this month) and so have come to meet some new people. I am still going through a lot of sickness at the moment, stuff in addition to my regular chronic illnesses. I am seeing an infectious disease doctor, I have CT scan scheduled for Wednesday and a procedure at the GYN this afternoon. On top of all of this, my mother has developed a re-occurrence of C. Diff, which she contracted in the hospital in late Aug./early Sept. We have a lot going on.
I met someone who had asked me to get together and I explained that the day in question was free at the moment, but that between not feeling well, and waiting to hear when tests (like todays GYN visit or the CAT scan) would happen, that might change. I felt I was being clear and honest. Last Thursday when I spoke to the GYN and found out I had to schedule this procedure today, I let my friend know that today wouldn't be a good time for getting together. This person went ahead and got tickets to a hockey game for tonight. I got a phone message yesterday to the effect that he hoped I would be able to make it since my doctor was at 4pm (which isn't the right time, but still. . .) and the game would start around 7pm and we could "catch some dinner before". Now I don't know about you, but I am not particularly fond of having a GYN procedure, hopping off the table and into rush hour traffic to go meet someone whom I don't know well, and then sitting through a hockey game. Another night I would love to do this. Had I not been clear when I told him that I had a doctor appointment scheduled for today I would feel guilty. Instead I feel angry and a bit manipulated.
It's a circumstance I've become too familiar with over the years. People hear what they want to hear, and then make you out to be the bad guy when things don't go as planned. It is disappointing enough to have to bow out of plans you would really like to keep, without the added guilt that goes along with this sort of behavior. I know the tickets weren't cheap. They also probably weren't easy to get on short notice. I just wish that instead of getting them and telling me about it after the fact, I had been consulted.
Do others find that even when they try to be open and honest about their health and the limits it puts on them, others seem to expect more than you can deliver? How do you handle this? I want to make new friends and keep myself open to new experiences, but I don't want to feel like a bad person when my body simply isn't cooperating. Any thoughts?
Sunday, November 2, 2008
This is an interesting and exciting way to learn more about the book, and about the author. Please check Rosalind's site Working With Chronic Illness each day to see which blog she will be featured on that day. Check back here on November 20, 2008 for a post on developing your skills to be the most valuable YOU you can be, and why that is so important both in work and personal life with chronic illness.
Saturday, November 1, 2008
I love to sit on blue things, or in a blue room to set off my eyes. A girl has to show off her assets you know!
Go to Photohunt or Daisy The Curly Cat
Chronic illness obviously touches my life, but it touches all of us, sick or not, in the cost of health care. We need to make sure that this is a priority this election. Many of my fellow chronic illness bloggers have written terrific posts on this subject, but the most important thing we can do is VOTE! In order to vote, we must educate ourselves on where each candidate stands on important issues, especially health care.
I previously posted links from The New England Journal of Medicine website which show each candidate's stand on health care. I will list those again here:
Side By Side Summary
Voting is a very personal thing, and many factors go into choosing the right candidate for each person. Please take the time now to decide for yourself what your most important issues are, and to do a little research into where each candidate stands on those issues. We are so blessed to live in a country where we can vote our free will and we must not take that freedom lightly. I am not endorsing any candidate, I am just asking all of you to use your minds, hearts and consciences and VOTE!
Friday, October 31, 2008
As I have mentioned before, I live with my 75 year old mother, which is a blessing for us both. Shortly before I began blogging, my mother had been hospitalized for 10 days and had developed C. difficile, an infection in her intestines, while in the hospital. Well, the C. diff has returned. This is bad for mom, but also for me. With my multiple illnesses, and especially being on hydrocortisone therapy, I am very vulnerable to catching infections. When mom had this infection the first time, I started to manifest symptoms of the illness and was put on an antibiotics prophylactically because the gastroenterologist was concerned about the possible effect to me due to my inability to tolerate the antibiotics that normally treat this infection, as well as the fact that I take pain medications that slow the movement in my bowel down, making the bug live longer in my system.
The other wonderful thing about C. diff is that the only thing that kills it is bleach. You can't use antibacterial wipes to clean up in the bathroom or Purell on your hands. Since mom and I share a bathroom, that means constant cleaning with bleach, as well as vigorous hand washing with hot water and soap for no less than 30 seconds each time you use the restroom. Well, at home that isn't so hard to do, but try that in a public restroom. Many times you can't even find soap, let alone hot water or something to dry your hands on. Even at home, there is the joy of standing there in the middle of night, trying not to wake up while you wait for the water to get warm and you start to clean and count.
My poor mom has the worst of it of course, but it is another reminder that I cannot ever just be caregiver, I have to always worry about how things affect my own health. I need to try to stay healthy so I can care for mom. She feels guilty exposing me to an infection she didn't cause. I guess the apple really doesn't fall far from the tree in this case!
I am blessed, to still have my mother and to be able to help care for her as she has done for me for my whole life. Still, it doesn't make it easy to handle the extra cleaning and the worry, but given the alternative I am will happily deal with both.