Friday, October 31, 2008

The Caregiver Role

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.

Wednesday, October 29, 2008

I Have a Post Featured in the October Pain Blog Carnival

For many of us with chronic illness, chronic pain goes hand in hand. I, unfortunately, fall into this category myself. For many years I resisted the idea of pain medication and was able to function without needing it. During the last four years, as I became increasingly ill with more things, especially chronic pancreatitis, it became clear that I had to change my way of thinking on the matter of pain medication. I went through 2005. . . (please go to my full post to read the rest of this article)

It's that time of the month--the October Pain Blog Carnival from How To Cope With Pain is up. Please stop by to read my full post on dealing with the fear of dropping my pain medication dose as well as other terrific posts by other great bloggers.

Wordless Wednesday - Kitty Complains

Maybe if I complain loud enough they will listen??!! Who forgets to put litter out in the box anyway, will these humans NEVER learn? What's a cat to do?

Don't forget to check out these two great links for more Wordless Wednesday fun:

Wordless Wednesday
5 Minutes for Mom

Tuesday, October 28, 2008

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

Monday, October 27, 2008

Endometriosis and 'Dancing With The Stars'

As readers of my blog know, one of my chronic illnesses is endometriosis. In fact, I had a complete hysterectomy at 32 because of it. I had 5 prior laporoscopies and one for adhesions after the hysterectomy. To this day I still suffer from chronic pelvic pain from endometriosis as well as other conditions. I feel qualified to talk about this issue at length because I have lived it since I was 17 years old. I feel for any woman of any age who has endometriosis, but it is especially brutal when you are young because in addition to the pain, it often causes infertility. In my case, I had an ectopic pregnancy and was never able to conceive again.

I am watching 'Dancing With The Stars' right now, and one of the youngest professional dancers, Julianne Hough, has been diagnosed with endometriosis and will be having surgery tomorrow to have her appendix removed as a result of it. My heart breaks for her. I believe she is only 20 years old.

Teens and Safety on the Internet

One of the subscriptions I have via e-mail is with the Federal Citizen Information Center. If you are old enough you probably remember receiving the Consumer Information Catalog with all sorts of free and inexpensive publications put out by the government. There is a lot of good information out there, from health, to recalls, to information on insurance--you name it, they probably have a booklet or pamphlet on it. I got an e-mail today for their publication of the week, which in this case is a free DVD aimed at keeping teens safe on the internet. I have enclosed the body of the e-mail below with the link if you should be interested in ordering:

You are subscribed to Publication of the Week page updates from the Federal Citizen Information Center ( ).

How to teach teens about online safety? Order this week's featured publication, the "Cyber Security Toolkit for Teens." It's actually a free, interactive DVD that has lots of tips and is especially designed for classroom use by middle- and high-schoolers.

Place an order for the free DVD

Whether you have a teen at home or not, this is valuable information. I know I have nephews I want to know this, and frankly, I am sure I will learn something from it myself. So many of us are active on the social networking sites (MySpace, Twitter, Facebook, etc. . .) with our blogging and keeping in touch with families, but are we really doing all we can to stay safe? The updates are sent out weekly, they cover a range of topics and they are almost all completely free. I receive the e-mails, and if the item they feature doesn't apply to me, I just delete until the next time. It is free to sign up to receive updates. In these tough economic times, it is nice to have a free resource to go to for many different topics.

Saturday, October 25, 2008

Fall Festivals

I love this time of year. I am lucky enough to live where I experience all four seasons, and Fall has always been a favorite--from the changing colors of the leaves on the trees to the crisp autumn days and nights, I really enjoy it. Another thing I enjoy is the Fall festivals that are held everywhere this time of year.

Today I am meeting up with friends to attend a festival held at the Waldorf School. This is my first time going to this particular one, but the friends I am meeting up with have been going for years, and have told me how much they enjoy it. What hooked me for sure is that they have an entire DESSERT room! I heard that and thought, "I'm in!". They have a white elephant sale, vendors, food and lots of other things for all ages. Churches, schools and many other organizations have these type of things and it is a fun way to spend a few hours. The weather here today is supposed to be lousy, so luckily this is all indoors.

Do you enjoy Fall festivals? What is your favorite part of one?

Friday, October 24, 2008

A great idea from Warning: Schematic Inaccurate

A blog that I really enjoy is called Warning: Schematic Inaccurate. Today the post was on 15 things that you like about yourself (see her original post). I thought the idea was terrific. We all spend so much time focusing on the negatives, what a treat to celebrate the positives. So I am going to list my 15 favorite things about myself and I hope you will comment and add your favorite things about you. Let's all take a moment to honor who we are and revel in something nice about ourselves for a change.

My favorite things about me:

1. I a very kind and compassionate person.

2. I have a good sense of humor, especially about myself.

3. I am a survivor, I may get knocked down, but I don't stay there!

4. I find people interesting and enjoy talking to almost anyone.

5. I have terrific nails.

6. I am intelligent and thoughtful.

7. I can eat almost anything I want and not really gain weight.

8. I have striking red hair, not my own anymore but thanks to my wonderful colorist you would never know the difference!

9. I am a good friend and good listener.

10. I am a good daughter and care-giver to my mother.

11. I can see the beauty in others (inside and out) and give compliments freely.

12. I am not fake and I try not to lie.

13. I am encouraging and supportive to others, as they have been to me.

14. I enjoy getting up in front of people and have enjoyed both acting and public speaking in life.

15. I am always willing to learn something new.

What do you like about YOU? I really want to know. . .

Thursday, October 23, 2008

My Arch Enemy Makes A Return

PAIN!! It's back--not a surprise, but certainly not a thrill either. I am doing my best to cope. I am using the relaxation techniques I have been taught, using positive self-talk and distracting myself with good things as much as possible.

Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.

It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.

I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?

For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:

For John McCain
For Barack Obama

Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.

Wednesday, October 22, 2008

The Lighter Side

I have previously confessed my enjoyment with 'Dancing With The Stars'. I have to admit I was looking forward to it last night more than usual. With dropping on my medication on my mind, I wanted something fun and easy to watch. I find that when I get out of my own head for a little while, whether I use relaxation methods, hobbies or even just taking time to enjoy a TV show I like, it helps me to focus on things outside of the pain or fatigue of my illness. It gives me a 'vacation from myself' for a few moments and reminds me there is more to life than chronic illness.

Last night however, I did get annoyed that Cloris is STILL on the show while people who are actually dancing are being sent home. I admire Cloris Leachman, the woman is 82 years old and is trying to dance for goodness sake--that's admirable. But, I think it is unfair to keep someone on the show just for that reason. Week after week other couples have been sent packing, couples who may not be the best dancers, but who were at least DANCING! I hope the producers and the audience will wake up soon, we are half way through this season and it is time for people who have talent to step up and for those who don't to go home.

Tuesday, October 21, 2008

Without Answers

I had my appointment with the infectious disease doctor today. Luckily, some of the really bad things that could be wrong with me were negative. That's the good news. The bad news is that we still don't know what IS wrong. That means more blood tests and some CT scans next week. The doctor will be away until next Tuesday, so she has her nurse looking for some results and making sure to get those to internist if they need to be dealt with before her return. I am impressed with the fact that she isn't giving up and is trying to find answers.

She is going away to a medical conference on diabetic ulcers. She told me this because we were talking about doctors and how they like to deal with the "sexy" or "exciting-high profile" things-- like in her field-- anthrax, or some such seminar. She said she likes to learn things that help people in the day to day. By going to conferences such as this one, she has been able to help people avoid amputation and have a better quality of life. I was shocked to hear a doctor realize the importance of those things. She understood completely how many doctors don't want to deal with chronic illness patients because we don't provide easy answers, sometimes there aren't answers and it isn't all exciting or worthy of publication. The fact that despite that, she wants to help, wants to see the quality of my life improve, really touched me. By the way, she works at one of the top hospitals in the country, so it isn't like she couldn't reach for those other areas of study. In fact, I would guess she would be held in more esteem by some for doing that, but she wants to help her patients. It is heartening to see doctors like her still practicing, because I have seen too many on the other side of line.

Tonight will be my first drop in pain medication and I don't know what to expect. I am hoping for the best, but prepared for the worst. I have received some wonderful support from the on-line community, which is so uplifting. Thanks for caring and for taking the time to let me know you are there with me.

Monday, October 20, 2008

Rough Times Ahead

For many of us with chronic illness, chronic pain goes hand in hand. I, unfortunately, fall into this category myself. For many years I resisted the idea of pain medication and was able to function without needing it. During the last four years, as I became increasingly ill with more things, especially chronic pancreatitis, it became clear that I had to change my way of thinking on the matter of pain medication. I went through 2005 with more time spent in the hospital that year than home, mostly because I wasn't on pain management. Finally during a six week hospitalization around this time last year, I was sent home with medication. The experience was so bad I don't even want to recount it here. I wasn't given the appropriate medication, the correct dosages or any sort of support from a physician to monitor me. This all necessitated a move out of state to find competent medical care.

Beginning in January of this year I started seeing a good doctor where I moved, who not only finally got the pain under control, but carefully monitored me and helped me to finally get control of my life back. The approach in his office is multidisciplinary, meaning I am also seeing someone who works with me on stress reduction and alternative ways to manage pain, such as relaxation techniques, guided imagery and biofeedback. To say it has been a long, scary and painful road back to myself would be the understatement of my life.

Today my doctor and I met for our regularly scheduled appointment and he said the thing I had been fearing most, "we need to start trying to cut back on some of medications". I know he knows what he is doing, that he has my best interests at heart and that he will be there to support me. I know all these things logically, but emotionally is another thing entirely. Emotionally I am frightened of going through pain, withdrawal and the whole terrible upheaval that had been my life prior to this hiatus. I know that thinking positively is the best cure for the fear, but the pain and the fear are so fresh in my memory that at moments they overwhelm my logical side. I fought so hard to get back to where I am now, which isn't anywhere near where I wish I was, but still compared to where I was a year ago, it is miraculous. I don't EVER want to go back to the pain, the withdrawal symptoms, the lack of concerned medical care. I didn't uproot my whole life, and that of my mother with me, to go backwards.

I know logically that this doctor isn't like the other ones. He does listen. He is actually available when you call, and if for any reason he isn't, there are other doctors available through the practice 24/7. The first "pain management" specialist I saw was in two days a week and not available at all in between, so if you had a problem, you suffered until you could reach him. This doctor isn't him, and I know that. But I still have fear.

I write this not to scare anyone else who may be needing pain management, without a doubt getting the help I needed was the best thing I ever did. I wish the process had been simpler, so the fear wouldn't be so great. I write because I know that many of you out there understand. If you haven't experienced it personally, you have watched someone you love go through it. I write because giving a voice to my fear takes away some of its power. I write because I always want to be honest about where I am at and what living with chronic illness is like, even the parts that aren't pretty and upbeat. I want to be true to myself and to those who read this.

So, as I head into my scary time, I am using each one of you as my imaginary cheerleaders. I think of all we go through each day and all we accomplish despite the obstacles we face. I promise to use the techniques and self care I have espoused to you, taking care of myself as I head into this. I ask for your prayers, support and good wishes that things will much more smoothly than I am anticipating, and that this 'bogeyman of fear' will be banished quickly and permanently.

Tomorrow I head back to the infectious disease doctor for test results that will point either to a problem in that area or possibly back to the adrenal insufficiency to explain the fevers, fatigue, diarrhea, pain, etc. . . that I have been suffering from. Soon I will have the biopsy on my thyroid that will help determine what is up with the nodules. Each day will be a new worry, but hopefully also a new answer. During times like these, it is sometimes tough to remember that the bad times never last forever.

Saturday, October 18, 2008

Project Runway

Okay, I know I am a little late in posting on this, but I LOVE Project Runway and this season has been no exception. I admit I held my breath a little during the finale, not sure who would win. This is the first time the contestant I wanted to win did --Yea Leanne! I really thought Korto was incredibly talented as well, and I am sure she will go far in the fashion world, despite finishing second. As for Kenley, her attitude certainly didn't endear her to me, but I also felt she fell short as a designer. For me, her looks were too similar and too out there.

I discovered Project Runway when it was already several seasons on the air. I was confined to bed during a flare and there was a marathon of one of the past seasons on. I started to watch and got hooked quickly. Although I don't sew, I can appreciate the hard work that goes into what these contestants are asked to do. My mother always sewed when I was growing up, and I know how much work was involved in making each garment. In fact, my mother had wanted to be designer when she was young. She was enrolled in F.I. T. (The Fashion Institute of Technology in NYC) but had to drop out due to illness. Mom never got to live out her dream of designing clothes, although I am sure she would have been great had she been able to. I remember being a kid and just wanting store bought clothes. We were poor and couldn't afford the latest fashions. My mom made all my clothes when I was young, and unfortunately, at the time I didn't appreciate it. I thought it made me look weird and different. Now I would love to wear something made just for me! Isn't it funny how we realize so many things too late? My mom doesn't sew anymore, her arthritis makes it hard to do so and her glaucoma makes it impossible to thread needles and do the other minute tasks required, but she still has style. We have enjoyed watching this show together, and from her experience I get to understand the designers struggles in a whole new way. I also find I look at garments differently than I did before. It isn't just a matter of whether they are my personal taste, but also of how much skill, effort and ingenuity went into making them. I learned that from mom as well.

I realize that fashion isn't the be all and end all of the world, but it is fun to have a show to enjoy with all ages, that shows people sacrificing to make a dream come true. I guess I enjoy it in a similar way to 'Dancing With The Stars', I live vicariously through the contestants. My body and my skill set won't allow me to do those things, but in my dreams I am there competing as well. I also learn things along the way, about myself and about others. Hey, it's not PBS, but sometimes it is fun to be entertained, especially during a long, painful flare when you want desperately to focus on something outside of yourself.

On Writing

I enjoy writing, and obviously I have an interest in doing it or I wouldn't be blogging, but I am always looking to learn more about the craft of writing. I attend a writer's workshop that meets monthly nearby to where I live. The teacher is a published author and a college professor, Barbara Novack. She is very supportive of all of the members of the group and extremely helpful and informative. Barbara is wonderful at helping you when you feel stuck, editing when you need it and pointing you to places you might not have thought about to submit your work for publication. The other writers are a very talented group of people with diverse interests. I find everyone to be so supportive of one another, which is really lovely. Even if the genre I write in isn't what interests someone else, they are always thoughtful and helpful in response to my work.

In addition to the workshop, I enjoy reading books about writing. Someone from the writer's workshop had recommended Stephen King's 'On Writing' and I have been reading that the past few days. I have to say that Stephen King is not the type of author I usually read, but he makes some very interesting points about writing itself, and of course he is an enormously successful author, so he has a lot of valuable experience to share.

Another book I really enjoyed was written by a local author, Carol Hoenig, who came to speak to our writer's group about how to market your writing. She has written a beautiful novel, 'Without Grace' as well as a non-fiction book for writer's trying to get their book into reader's hands, 'The Author's Guide to Planning Book Events'. It has some of the most creative ways I have seen to target your audience and plan events that will get your book noticed and purchased.

Lastly, I read on a whim a tiny book by Scholastic titled, 'Conversations With J.K. Rowling' thinking it would be interesting to learn more about the author of the Harry Potter series. Although the book is clearly aimed at a young audience, it too had some useful information for fledgling writers. I read and loved the Harry Potter series, so I enjoyed learning more about Ms. Rowling and her experience with writing and becoming published.

Of course the very best thing for anyone who writes to do, beyond the actual writing, is to read! I love to read and find so many authors inspirational. If you are lucky enough to have a writer's group nearby, I encourage you to take part. If you can't find a group in your area, you can probably find one on-line, although I am partial to meeting in person with flesh and blood individuals myself!

Friday, October 17, 2008

Women and Voting

I am not one to talk politics, I feel it is an intensely personal and private thing, but since we are approaching an important presidential election, and so many of the issues are dear to all of us (health care anyone?!!) I wanted to talk about voting. Awhile back I received an e-mail about women and the right to vote. In it was discussed a lot of what the early suffragists went through for us to be given this right. It also talked about the movie 'Iron Jawed Angels', put out by HBO, which chronicled the suffragettes struggles. I am ashamed to say, I wasn't aware of any of the facts I read about. I wasn't taught this history in school. I hope that by now this has changed, but I fear it probably hasn't. I haven't had the chance to see 'Iron Jawed Angels', although I am Netflixing it to see before the election. I can't speak for the accuracy of everything contained in the e-mail and I can't credit the author, because there was no name given. I would like to provide some of the substance of the e-mail here, in the hopes that if you, like me, were unaware of what these women went through for us to gain the right to vote, that learning just a little more about them might make you appreciate this right even more! If you are aware of this part of history, please take the time before the election to get the word out to other women who might not be aware, we owe these women at least that much! If anyone has knowledge of the author of the e-mail, please let me and I will gladly publish that information here as well. In the meantime, get a copy of 'Iron Jawed Angels' and learn something about American history you might not have known!

The original e-mail went as follows:


"This is the story of our Grandmothers and Great-grandmothers; they lived only 90 years ago. Remember, it was not until 1920 that women were granted the right to go to the polls and vote. The women were innocent and defenseless, but they were jailed nonetheless for picketing the White House, carrying signs asking for the vote. And by the end of the night, they were barely alive. Forty prison guards wielding clubs and their Warden's blessing, went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic'. They beat Lucy Burns, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air. They hurled Dora Lewis into a dark cell, smashed her head against an iron bed and knocked her out cold. Her cellmate, Alice Cosu, thought Lewis was dead and suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, twisting and kicking the women. Thus unfolded the 'Night of Terror' on November 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote. For weeks, the women's only water came from an open pail. Their food--all of it colorless slop-was infested with worms. When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited. She was tortured this way for weeks until word was smuggled out to the press."

The author goes on to speak about how she was unaware of this history and the need to make others aware:

"So, refresh my memory. Some women won't vote this year because -why, exactly? We have carpool duties? We have to get to work? Our vote doesn't matter? It's raining?

Last week I went to a sparsely attended screening of HBO's new movie 'Iron Jawed Angels'. It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say. I am ashamed to say I needed the reminder.

All these years later, voter registration is still my passion. But the actual act of voting had become less personal for me, more rote. Frankly, voting often felt more like an obligation than a privilege. Sometimes it was inconvenient.

My friend Wendy, who is my age and studied women's history saw the HBO movie too. When she stopped by my desk to talk about it, she looked angry. She was--with herself. 'One thought kept coming back to me as I watched that movie', she said. 'What would those women think of the way I use, or don't use my right to vote? All of us take it for granted now, not just younger women, but those of us who did seek to learn.' 'The right to vote', she said had become valuable to her 'all over again'.

HBO released the movie on video and DVD. I wish all history, social studies and government teachers would include the movie in their curriculum. I want it shown on Bunco night too, and anywhere else women gather. I realize this isn't our usual idea of socializing, but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.

It is jarring to watch Woodrow Wilson and his cronies try to persuade a psychiatrist to call Alice Paul insane so that she could be permanently institutionalized. And it is inspiring to see the doctor refuse. Alice Paul was strong, he said, and brave. That didn't make her crazy. The doctor admonished the men: 'Courage in women is often mistaken for insanity'.

Please, if you are so inclined, pass this on to to all the women who you know. We need to get out and vote and use this right that was fought so hard for by these very courageous women. Whether you vote democratic, republican or independent party--remember to vote. History is being made."

That ends the text of the e-mail. There were pictures of some of the suffragists included that I was unable to bring into the post. Again, I can't take credit for, or guarantee the complete accuracy of the e-mail text, but it is something to think about this election season. Please make your voice heard!

Thursday, October 16, 2008

Still Ill

Sorry for the delay in posting. I am continuing to battle medical issues and just haven't been posting as I normally do. I am hopeful to get a "real" post up tomorrow. I am awaiting word from an infectious disease doctor I was sent to this week. I am continuing to run fevers and feel awful. Hopefully, it won't turn out to be anything too serious. She took so much blood I am still a quart low!

I appreciate the patience of those who have been coming and commenting regularly. I know most of you have your own illness, or that of a loved one you deal with, and you understand bad times like these.

Friday, October 10, 2008

Fighting Illness and the "Adrenal Factor"

This past week I have been pretty sick with a sinus infection and some sort of virus. I'm not surprised given the stresses of the move, both physical and emotional, that my body would react by lowering its defenses and allowing a bug to take over. What is particularly annoying to me is that due to my adrenal insufficiency, it is harder for me to fight off infections or viruses, and I have to be extremely careful about maintaining my cortisol level, which affects my electrolytes, and giving my body the rest and nutrition it needs to heal.

Another thing I have to do is increase the daily amount of hydrocortisone I take, bumping up to what is called a "stress dose". I have to do this whenever I am under physical or emotional stress, to prevent severe, life-threatening complications from a drop in sodium, potassium or other important electrolytes. Of course the extra steriods produce their own set of problems, but it is all part of living with an adrenal insufficiency. Unfortunately, since the condition is so rare, there are even doctors who don't seem to get the importance of it. Luckily, I have a good endocrinologist as well as internist, who monitor me closely, but I have had problems even during past hospitalizations with getting the proper doses of medications for my situation.

I have learned to take things like this in stride, but it is another reminder that I have a body that acts differently than most, at times the fatigue makes it hard to get out of bed and the nausea and diarrhea contribute to the chance of dehydration. I am grateful that I became aware of my problem before I went into adrenal failure or shock, but I wish there were more known about this condition, and that more doctors understood the importance of keeping track of it along with my the many other things I deal with, especially when they seem minor, like a slight infection or a virus, which for someone else is usually the least of their worries.

Thursday, October 9, 2008

Virtual Book Tour - Rosalind Joffe

I am SO excited to a part of the virtual book tour for Rosalind Joffe's latest book, "Women, Work and Autoimmune Disease-Keep Working Girlfriend". Rosalind is a certified coach who has helped many people with chronic illness to stay employed, re-enter the workforce or find new work that suits their needs due to illness. Because Rosalind has been dealing with chronic illness herself for over thirty years, she knows and understands the unique impact these sort of illnesses place on us in the workplace, at home, with friends and family and in all aspects of our lives. Rosalind suffers from multiple sclerosis and ulcerative colitis. She lives with many of the same symptoms and issues that we do, including pain and fatigue, and she knows how to stand up for herself and others in the workplace.

I am honored that Rosalind will be doing a guest blog post right here on November 13, 2008. I have the opportunity to give her a topic to write on, and while I have some ideas of my own in mind, I would love to get feedback from you as to what types of things you would like to see addressed in her post. Remember, the book is about working with illness, so any questions that you might have along those lines would be appropriate. Please comment as soon as possible so that I have a chance to see what you are thinking before I contact Rosalind with a topic. This is a wonderful opportunity to get answers from a top authority in the field, and more importantly to some of us, someone who actually understands what it is like to have these types of illnesses and still remain working.

Considering the economic climate we are currently in, we are all in need of extra income - healthy or sick, but it has always been a struggle for many of us who are chronically ill to remain employed. This book could be the answer you have been looking for!

Tuesday, October 7, 2008

Fibromyalgia AWARE Magazine now available in CVS Stores

As mentioned in my biographical information, one of the illnesses I suffer from is Fibromyalgia. Since this condition is shared by so many chronic illness sufferers, either as the primary illness or as a secondary one, I wanted to make you aware of a great new magazine on the subject.

The National Fibromyalgia Association has a magazine title "AWARE" which is a wonderful resource and it is now available for purchase at CVS stores nationwide. As most of us with chronic illness know, it is rare for publications on specific illnesses to be available in regular places such as pharmacies, newstands , etc. . . With CVS offering "AWARE" it changes that. This is great news because it means you can pick up a copy when you are out running errands, getting a prescription filled or whatever. It will also bring awareness of this illness to larger audience of people who are shopping for magazines at CVS. Because there are still so many people who are unaware of what Fibromyalgia is, it will serve as an educational tool for them as well!

I hope you will support the National Fibromyalgia Association and this publication by purchasing the magazine and by letting others know it is available as well.

Monday, October 6, 2008

The Death of Customer Service

Has anyone else noticed that there seems to be a lack of customer service these days? I've watched this trend over the past 10 years or so decline further and further, no matter what the industry. Even if you can afford to shop in the higher end stores, there is a lack of knowledgeable sales help, and at the other end of the spectrum, the big box stores, you can't even find an employee most of the time.

Because of the recent move, I have spent more than a little time on the phone with "customer service" people from all sorts of companies, from cable and phone to insurance and social security. Besides being driven to near distraction by the automated phone systems, I have found that when I reach an actual human being there is little or no concern for helping me to resolve whatever issue has prompted my call. I wish I could say this is the rarity, but it has actually been the norm. I have had people be rude to me from the moment they picked up the call. I try very hard to treat everyone I deal with respectfully and courteously, an my mother always said "treat others as you wish to be treated". Unfortunately, it doesn't seem to matter that I am not rude, loud, abusive or obnoxious-- the lack of service is still an issue. I know that people who work with the public all day receive a lot of abuse, most of which is uncalled for, and I think it is one of the toughest jobs in the world. What I don't understand is companies who hire and keep employees who seem bothered by the mere fact that they are being asked to do their job.

I've had a particularly rough time with our local cable TV company. Not only was my installation not done properly, but there is damage to my house and they managed to cut off service to the people who live above me instead of taking the time to do the installation right. The technician came in the door complaining about having too many jobs on his list that day, and proceeded to take the easy way out by disconnecting the tenant upstairs from all their service, and re-tagging the service to us. Of course I didn't know this at the time. My neighbors were left without phone, TV or internet service for 4 days! What a lovely way to make new friends of your neighbors! Luckily, they are good people who understood that the problem was with the cable company and not us. When they finally got someone out here to address the issue I was home, and that technician was the one who told me that the technician before had cut the neighbor's service and hooked us up to it. When I asked why such a thing would happen, he explained that since the cable company can't keep up with the demand they have for service calls, they hire out to sub-contractors. The man who came out was a sub-contractor who apparently didn't care about what he was doing. He saw an easy way to get me up and running and knew the neighbors weren't in, so he simply disconnected them and walked away.

I started working at a young age, and was taught by my upbringing as well as my employers that the customer is always right. My responsibility was to please the customer and to be polite and helpful in doing so. Of course you came across people who were unreasonable or rude, but you did your best to remain professional, and if need be you let a manager handle things. These days you can't even get a manager on a phone or in a store, and many times if you are fortunate enough to reach one, you get a laundry list of their complaints and excuses for why they can't help you.

I don't know where things started to break down, but the chain reaction has been, and I fear will continue to be catastrophic, until we all start to realize that we are in things together. We need qualified people to help us, we have a responsibility to act with kindness and decency toward the people who work with and for us, and we need to stop feeling entitled to things, as if we are somehow more important than the next person in line.

Of course this is never more evident to me than when I am dealing with a healthcare provider and as a chronically ill person I am doing that on an almost daily basis. I try very hard to make a point of thanking someone who provides me with good service, but beyond that I am out of ideas. I am wondering how the rest of you are finding things and what you do to cope when you don't receive proper service? I know that stress isn't good for any of us, especially those already dealing with health problems, and I am looking for creative ways to deal with a problem I don't see going away for a long time. I would appreciate your comments.

Sunday, October 5, 2008

Back Into The Routine

Well, we survived the move. Notice I used the word "survive", because that's what it feels like--something akin to getting through a tough bout of illness or a car accident! The movers were awful and caused a lot of stress and a fair amount of damage. Trying to get back on-line with cable, internet and phone was another hassle. Thankfully, things are starting to get settled and we are unpacking and beginning to feel more at home.

The upside to all the turmoil is that the new place and neighborhood are totally worth what we went through to get here. The new house is wonderful, and once everything is unpacked and we are comfortable, we are going to be very happy here. We did take the time to walk around the neighborhood yesterday morning and were pleasantly surprised at how friendly and nice everyone is. Hey, I even had a positive experience with the local CVS! In fact, the day we moved in we got a visit from a neighbor with a "welcome basket" full of goodies (Irish Soda Bread and candy) as well as some really useful information like a local map, the local newspaper and a pamphlet about the town and all the activities and organizations it offers. It was so sweet and thoughtful, and believe me we have used each item in it already. It was ironic, because for the 2 years we lived in our house in North Carolina we made a welcome basket for each new neighbor, and not only did we not receive one when we moved there, we were never even thanked for doing it. Now if you are from North Carolina, please don't be offended, I am not picking on you. I think that is more the norm now in most parts of the country than what we experienced here. I didn't take it as a reflection on North Carolinian's, more on the state of affairs in our country as a whole. We have lost a sense of community and neighborliness.

All of this rambling leads me back to thinking about how difficult it can be to find help when we need it due to illness. Everyone is so busy these days with their own lives, that a lot of the time they don't think about the fact that people are in need of help, or they feel so overwhelmed by their own circumstances they don't offer to do for others for fear they will get locked into something they can't keep up with. During Invisible Illness Awareness Week, I found out about and was able to download the first 40 pages of Lisa Copen's book, "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend". What a treasure this book is, both for us who are chronically ill, and for those who care about us! It has really concrete ideas of things people can do to help friends who suffer from chronic illness, and she addresses the time concern factor with terrific ideas that take as little as 5 minutes to bigger time commitments should one be able to make them. I am ordering multiple copies to give to friends, family and church members. Maybe I am a Pollyanna, but I truly believe most people WANT to help, they just don't have any idea WHAT to do so they end up doing nothing, or doing something - while nice, which might not be the thing we really need.

I feel encouraged that with this move we are going to be able to start to build a better support system for ourselves, and to be a support to those we meet as well. As I mentioned in my post about being a friend, we have to model the behavior we want to receive. Sometimes when we are in pain or very fatigued, we have a tendency to think that people should just know what we want or need. Not only isn't that fair to others, it is self defeating as well. How can someone meet your expectation if you never state it clearly?

Before I end this post, I am excited to announce that Rosalind Joffe, author of "Women, Work and Autoimmune Disease: Keep Working, Girlfriend!" and career coach and founder of, will be doing a guest post on this blog in November! I am so honored to have her writing here and look forward to sharing more details with all of you soon!