I Need Your Help!

A long overdue hello to those of you who have actually hung in there with me through my LONG silence! I will get into more details about the reason for that in another post, but right now I need your help. It seems that some people who are subscribed to my blog posts are getting another blog but it seems to be somehow connected to mine (ie: if you click the link in the e-mail it directs you to a blog by my name but written in a foreign language that doesn't appear to have anything to do with chronic illness and certainly isn't authored by me!). I am wondering if anyone else is having this problem, whether you subscribe via e-mail or feed and if you have any ideas on what might be happening or who I should contact to try to sort it out (those of you who also have Blogspot posts might be able to point me in the right direction).

I would appreciate ANY and ALL input you could share with me. I do intend to resume posting and I don't know if I am going to have to create a new blog and take this one down or if this can be fixed. In the meantime, please do not unsubscribe, give me a chance to work on this, because if I should have to change blogs I won't have any other way of letting you know the new info if you would be so kind as to follow me.

Thanks in advance for your thoughts, my readers are the brightest and best and I know we will figure something out!

Pain Blog Carnival Is Up!

The September issue of the Pain-Blog Carnival is up over at How To Cope With Pain. As always, there are some wonderful posts from great bloggers. Please take a moment to check it out.

And The Beat Goes On

Have you ever had so much to say you didn't know where to start? That's how I feel right now writing this post. So much has happened, and yet it would be ridiculous, not to mention novel length, to tell it all. So how to sum up without dismissing the horror of the past few months. . .

Obviously things took a big turn for the worse with the insurance company debacle over covering my pain medicine. That, for the moment, is straightened out. What I have learned along the way is that everything is always hanging by a thread, waiting to fall apart with little or no notice. Because my body was put through so much with out of control pain, I am now on even higher doses of pain medication than I formerly needed. This not only angers me, it costs me more and will in the end cause more problems for me medically. The blame for it sits squarely at the feet of the insurance company, who of course could care less.

Not surprisingly I am having all sorts of other medical issues. Many of these are directly related to the stress my body and mind have been under while fighting to get my pain back in control. I am currently going for testing to see how my pancreas is doing, if there has been further damage and if there is anything else that can be done to help. My immune system is completely shot, so a host of other problems has cropped up as a result of that, continuing infections, malfunctioning parts of my endocrine system, mysterious weight gain and water retention. I have more problems than time in the day to address them.

I am seeing lots of doctors, including quite a few new specialists, who are trying to address the problems - many of them don't have answers. Fortunately, being a veteran of "invisible illness" I am all too familiar with this scenario, so I mostly take it in stride.

In the meantime I have been taking a long, hard look at the things that ARE in my control, and what I am doing to support myself. The first thing that seems to go is self care, which of course is most important. I listened to Jenni Prokopy's first podcast over at ChronicBabe, and although I knew most of the information, it was a nice reminder. Good advice handled with humor and compassion. I recommend checking it out, even if you have been ill for a long time. Sometimes we all need a kick in the pants, and the information she gives, while basic for those of us who have been dealing with chronic illness for a long time, is still helpful.

I am so grateful for the many wonderful e-mails and comments I have received from many of you while I have been struggling. I never cease to be amazed at the amount of love and concern that people have to share, and am humbled that they choose to share it with me. Even though my posts have been erratic and fairly maudlin lately, I have been lifted up by the care and support of each of you who took the time to say you where thinking of me, praying for me, understood what I was going through or just plain cared! Thank you from the bottom of my heart. It is support like this that keeps me going when I feel like I just don't have another fight left in me.

Hopefully my posting will start to be more regular again, and of course I hope to touch on something other than just my illness in each post. Thanks for hanging in there through the dark times and please keep coming back to share the lighter times as well.

Change The Conversation - Stop Using The R-Word

Who says you can't learn anything important from watching TV? Yesterday, while watching an interview with John C. McGinley on the Bonnie Hunt show, I learned about a program started by the Special Olympics. John C. McGinley has a son who has Down Syndrome. He spoke about the February 9th episode of the Bill O'Reilly show on which the word "retard" was used in a callous and derogatory manner. The statement was made by a guest on the show, Dick Morris, who said:

". . .What he [Obama] didn't quite explain to me, and maybe I'm a little retarded about this is. . ."

The result of this is the following video created by delegates of the Global Youth Activation Summit, Please take a moment to watch this important message:

Those of us who suffer from chronic illness know all too well how awful it feels to be judged unfairly or labeled by others. We are called weak or lazy for not being able to do things healthy people can. We are thought of as crazy or hypochondriacs because people don't believe in an illness they can't "see".

We who blog use words everyday to express our thoughts and feelings. Let's all make a pledge to stop the use of the R-word and all other hateful and hurtful language. Please head over to the Special Olympics website and take the pledge, grab the badge and blog about this campaign. This is one of the rare opportunities we get in life to make a difference for the better! Please join me today.

Pain - Carnival Blog Post Is Up and I'm In It!

It's been an exciting month around here. First my article was selected by Jenni for Grand Rounds and now it is being featured in the Pain-Blog Carnival along with lots of other good bloggers and articles. Please check out both blog carnivals, as there are so many good blogs and articles for everyone. I neglected to mention that my friend Leslie, from Getting Closer To Myself is also featured in Grand Rounds this edition. Congrats Leslie!

My Interview

I was reading Jo Beaufoix - Like Kate Moss But Not, one of the blogs I follow, and the author was interviewing other bloggers. I enjoyed the idea so much that I signed up to be interviewed myself. I was asked 5 questions, which I have answered below.

My five questions:

1. 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!
2. 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!
   
3. 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
4. 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:

1. Leave me a comment saying "Interview Me".
2. I will respond by e-mailing you 5 questions (I get to pick the questions).
3. You will update your blog with the answers to the questions.
4. You will include this explanation and an offer to interview someone else in the same post.
5. 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.

Ready to play?

Back From Break

WOW, it has been awhile since I last posted. I wish I could say I was away for the holidays, but in truth things haven't been too well with me. I needed to take a break for health and personal reasons.

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.

Superior Scribbler Award

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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.

I am passing it on ~ but I am also telling those I send it to to refuse the award if they don't have time or energy to keep it going! Just know I was thinking of you and letting you know how much I enjoy your blogs.

1. LEMON-AIDE - consistently the best writing, the most uplifting and the most caring blogger I know!
2. Dottie - an inspiration for her candid thoughts and proof that you are never too old to start blogging or following your dreams.
3. 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.
4. 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.
5. 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.

Thanks again Renee for the award. You know I love your blog and so it is a special honor to be nominated by you! To all the great bloggers out there, thanks to each of you for your friendship, your honesty and your writing!

The Good, the Bad and the Ugly

Wow, I have been one neglectful blogger!! I apologize to all of you who regularly check for new content, it really has been too long since I last posted something new. It's been a combination of factors from health to personal, and I have several rants started that at some point I might just post. . .

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. . .

True Gratitude!

One of my favorite things about blogging are the other incredible bloggers you meet. I participate in Wordless Wednesday and Photo Hunt Saturdays, and through these forums have met bloggers from every country and walk of life. One of my favorites is Terry, from the blog Notes From One Mom. We "met" through our comments on each others photos. Terry, having read my profile, shared with me that she is the caregiver to her husband, who has had a stroke, as well as a patient with a chronic illness herself. I love her writing and her upbeat, positive outlook on life. She had a post on her site about her husband that she had written that touched me so deeply, I asked her permission to share it on my blog. I think it is such a powerful expression of love and understanding, and it certainly made me realize that despite our illness, the ones who really know and love us, see the whole person--not the illness or disability. I hope you will find it as beautiful as I did, and perhaps you will be inspired to write to someone in your life who you are thankful for.

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

Lemonade Award

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

I received The Kreativ Blogger Award Today!!

WOW, imagine my surprise this morning when I opened my e-mail and saw that Connie, from Brainfoggles had made me one of her choices for the Kreativ Blogger Award!! I was so thrilled, touched, happy and surprised. Connie has been such an awesome support to me as I go through learning about blogging. She has freely given to me of her time, talent and knowledge and I wouldn't be able to have done most of things I have on my blog without her. In addition, she has been warm, compassionate and supportive of me as a person as well as a fellow blogger. I am so thankful that she nominated me for this award.

My instructions are to tell 6 things that make me happy and then pass it on to 6 people to make them happy. Isn't that a wonderful idea? So here goes. . .

1. Chocolate - ok, I know it isn't world peace or anything, but it truly makes me happy!!

2. My friends and family, who support and love me for who I am, what a blessing!

3. The ocean - the sight, sound and smell of it instantly relax and renew me. If I can't get there
physically, I will go there in my mind to take a mini-vacation anytime. There is something
so soothing about it to me. I can even look at a photo of waves on the sand and feel myself
relax and unwind.

4. All of the pets I have ever had. I don't currently have any, but each and every one has
enriched my life with their unconditional love and friendship. Animals take you exactly
as you are and love you no matter what.

5. Writing and blogging - I love being able to express myself through the written word. I enjoy
sharing both the real and the fictional and I hope someday to write at least one book.

6. Laughter - my own or anyone else's. Laughter truly is healing. I love the way I feel when I
laugh and I love to see others laugh too. To see that pure joy bubbling forth from someone
is a treasure. When illness or life get me down, laughter is one of the best tools I know for
recovering from any bad situation. To be able to laugh AT myself has been a huge blessing
in my life.

Now here are the 6 people I would like to award:

Kerry, from Lemon-Aide
Kitrona, from Warning: Schematic Inaccurate
Renee, from Renee's Reflections
Jenni, from Harvesting Hope from Heartache
Leslie, from Getting Closer to Myself
Jeanne, from Jeanne's Endo Blog