Being Chronically Ill Is A Pill

The Graceful Artist

noreply@blogger.com (Maureen Hayes) — Sat, 04 Jan 2014 04:41:00 +0000

A little over a year ago I took an online drawing class with a fabulous instructor named Elizabeth Johnson. Elizabeth, along with a group of like-minded friends has started a wonderful new site called "The Graceful Artist". This is their mission statement:

OUR MISSION STATEMENT

THE GRACEFUL ARTIST IS AN INTERACTIVE ONLINE COMMUNITY MADE UP OF CREATIVELY MINDED MEMBERS. WE ARE OF THE CHRISTIAN FAITH BELIEVING THAT OUR LIVES HAVE BEEN CHANGED BY THE REDEMPTIVE GRACE OF JESUS CHRIST. WE BELIEVE THAT GRACE IS OFFERED TO ALL AND PRAY THAT OUR EXPERIENCE HERE WILL LEAD TO SHARING THIS GOOD NEWS WITH OTHERS. WE BELIEVE THAT OUR CREATIVITY IS ENRICHED BY OUR FAITH AND THAT OUR FAITH IS DEEPENED WITH CREATIVITY. IT IS IN THAT SPIRIT THAT WE JOIN TOGETHER TO LEARN FROM AND WITH OTHERS IN THIS COMMUNITY.

There are many different workshops that are going to be offered, in many art forms, by different instructors, but they are all going to have a Christian focus that will help to enrich the creativity they spark. Currently they are offering a $50 gift certificate to Jerry's Art-o- Rama, one of their sponsors. This would come in quite handy for purchasing supplies for any of the available workshops, or just for a great shopping spree for supplies for the new year. For all the details, please go to http://gracefulartist.com/happy-new-year-prize/.

January Creative DARE with Tracy Weinzapfel and Mixed Media Mondays

noreply@blogger.com (Maureen Hayes) — Fri, 01 Feb 2013 00:08:00 +0000

Here is my January Dare creative project, my word of the year is HOPE:

Handmade Soaps, Body Lotion and More

noreply@blogger.com (Maureen Hayes) — Fri, 10 Aug 2012 00:34:00 +0000

I have been lucky enough to get to know Paula Parrish of Living A Blessed Life. Each month Paula gives away some of her fabulous homemade goodies to one lucky reader who leaves a comment. I was the lucky winner this past month and I wanted to show you the goodies that showed up at my door yesterday. . .

I hope the above picture does these products justice because they are truly wonderful! Those of you who know me in "real life" know that I have a lot of allergies, especially to fragrances, part of the fun of having multiple chemical sensitivities. Anyway, the original prize had lavender in it, which while lovely for most people isn't so good for me. Paula graciously made a swap for me to the honey and oat soap and the unscented lotion. She even hand makes the lovely washcloths she includes!! This is a talented lady folks.

Many of you are living with chronic illnesses as I am, and the less chemicals and artificial ingredients we put in or on are bodies, the better for us. This is a simple and yet wonderful way to take care of your skin and your health! I know my doctor is always after me to do more to get chemicals out of my daily living and this is a step in that direction. The soap smells lovely and feels like heaven on your skin. I tend to have dry and itchy skin, even in summer, probably as a result of my autoimmune problems and my medications, and the oatmeal soothed it immediately. It is not harsh or drying, in fact the opposite. The body lotion contains shea butter, which is such a great moisturizer and easy on the skin. I felt pampered using the pretty washcloth, but it exfoliated nicely without being irritating.

I was so thrilled to win this prize package, and even more thrilled after trying Paula's products. Her blog is so much fun and I learn a ton about natural alternatives to use in my beauty routine. She is also a wonderful writer and has posts on a variety of subjects, so there really is something for everyone. I recommend you follow her blog as well as check out her website to see all the products she has to offer. Please also stop by her Facebook page an "Like" her there as well.

Thank you Paula for this wonderful gift, you know I will be ordering from you regularly from now on!

Ready, Set, READ. . .July 2012

noreply@blogger.com (Maureen Hayes) — Sat, 21 Jul 2012 00:28:00 +0000

Jenny from Jessie Street Designs and Kadie from Seven Alive are running a fun series each month called Ready, Set, Read. . . ! Each person who participates links up and shares a book they have read that month. For July I chose a nice, light summer read called A Deadly Grind by Victoria Hamilton. This is the first in a new series of Cozy Vintage Kitchen Mysteries.

This book is the first in a series of Vintage Kitchen Mysteries. Jaymie Leighton is the vintage cookware and cookbook loving collector who ends up trying to solve the mystery of the man who is murdered on her summer porch following her purchase of an antique Hoosier cabinet at auction. Despite her older sister Rebecca's lack of confidence in her, Jaymie manages to move on from a broken heart over an ex-boyfriend, help out several neighbors in need and find time to pursuer her dream of having her cookbook published, all the time trying to figure out why the murder that took place on her porch happened and who the victim is!

This is a delightful story, with well written characters and a good plot. If you happen to like vintage kitchen items you will love Jaymie, who collects all things vintage. But even if you aren't a collector, you will be drawn in by the author's writing and her development of each of the characters, even the lesser ones. Ms. Hamilton creates a wonderful small town that makes you wish you could visit and get to know all the locals. As you progress further into the story you genuinely care about the people involved and want to know more. Most importantly for a mystery, you are truly guessing right up until the end as to the identity of the murderer and the reason for the crime!

I thoroughly enjoyed this book and am eagerly awaiting the next installment. I am interested to see what happens with the budding relationship between Jaymie and her new love interest Daniel, as well as to hear more exploits of Jaymie's trusty three-legged Yorkie-Poo, Hopalong.

I always enjoy finding an author who can create characters that make me care about them and want to return to their world and see what happens next. Ms. Hamilton has done just that, in a vastly entertaining story that had me staying up each night wanting to see what happened next!

If you enjoy good writing, funny, interesting and quirky characters, and a good dose of whodunit mystery, you will love this first book in the Vintage Kitchen Mystery Series.

Crumbles Cookie Factory

noreply@blogger.com (Maureen Hayes) — Sat, 14 Jul 2012 04:52:00 +0000

Anyone who knows me well knows that I adore sweets! Dessert is my favorite part of any meal and a day without chocolate isn't worth living ;-)

Because I am struggling with health issues at the moment, I was unable to make a cake for my Mom's birthday. I couldn't let her special day pass without having something sweet to celebrate with (who do you think I got my sweet tooth from in the first place?!) so I decided I would have to order something online. Luckily one of my blogger friends had just been having a giveaway and was raving about an Etsy shop with fantastic desserts called Crumbles Cookie Factory. She was featuring red velvet cookies, which while they looked divine are more of a favorite of mine than of Mom's. I checked out her shop and had trouble trying to decide what to order because everything looked so delicious. Finally I decided on the caramel candy brownies, since they combined Mom's love of chocolate with her love of caramel.

When I placed my order it was cutting it pretty close to Mom's birthday (which fell on a weekend and holiday this year) so I mentioned in the instructions to the seller that it was for a birthday and asked if there was any way she could get them here on time. I heard back from the owner, La Nae, immediately, letting me know she would be happy to meet my deadline even though I hadn't really given her a fair time frame to work within. I was so pleased that I would have something to present to Mom and went about the business of making her a card and waiting for the the brownies to arrive.

Little did I know that LaNae was not only planning on shipping the brownies so they would make it for Mom's birthday, but she was tucking in extra treats to make the day special for us both. She sent my order, but she also sent along some delicious 3D Peach cookies as well as the most amazing Campfire S'Mores I have ever tasted in my whole life!! When I opened the box, there was a lovely note from LaNae explaining that she wanted to do a little something special to make things nice for us since we were both ill and also to help make Mom's birthday extra special. I was floored. I mean I had basically asked this woman to create and cook an order and ship it the same day all because of my own forgetfulness, and she not only did it, but added extra to it just out of kindness! Now THAT'S customer service. The best part is that each item was fantastic, and I am a sweets snob, so that is no empty compliment coming from me!

LaNae didn't ask me to blog about this, she didn't ask for anything, but I wanted to let you know that her shop is wonderful. I was leery about ordering food items online and having them shipped. I didn't know how well they would stand up to shipping, if they would taste as good as they looked, etc. . . All my fears were laid to rest with that first bite. I will definitely order from Crumbles again and I encourage you to check out her shop and consider ordering for any special occasion you might have, or, if you are like me with sweets, any day you need a sweets fix, which is everyday!

Recently LaNae also started a blog where she has all sorts of fun contests and offers specials and coupons as well. I can honestly say she is one of the nicest sellers I have dealt with and her products are simply divine. I am not in any way affiliated with Crumbles Cookie Factory nor have I been compensated for writing this blog post. I just really like her stuff and thought her customer service was excellent and I wanted to let others know about her.

The Kindness of Others

noreply@blogger.com (Maureen Hayes) — Sat, 14 Jul 2012 04:05:00 +0000

I don't know about you, but there are days when I begin to despair about the human race. You know the days I mean, the ones where the driver behind you is on your tail and on the horn, the doctor is 2 hours late and doesn't apologize for keeping you waiting, and the lady in front of you at the grocery store has about 2 carts worth of groceries in the express lane!

Somehow on those very days, God always manages to send me a reminder in the form of "an angel with skin on" as one of my dears friends used to say. It isn't always some big deal, but without fail someone will do something so nice and so sweet for me, as to to redeem all mankind in my eyes! Today was one of those days, in fact it had been one of those weeks, if you know what I mean?! Nothing had gone particularly right and I was feeling badly and grumpy. The doorbell rang and the postman handed me a box. I hadn't ordered anything so I couldn't figure out what it might be.

I have "met" and befriended several lovely people on line since I have started crafting, one of whom happens to be a talented artist who is on several design teams. I found her work over at Faber Castell's blog awhile back, and then found her blog during a blog hop for another company. We began to correspond via email and found we had a lot of things in common. I admire her talent greatly and am a little in awe of her!

She had put together the most lovely box of goodies for me, all sort of yummy supplies that any crafter would be thrilled to receive. I am going to post some photos, but among the swag are many of Faber Castell Art Grip color pencils, Gelatos, Metallic Pitt Artist pens, and assorted Pitt Artist Pen Big Brushes and Pitt Artist Pens all in beautiful shades of blue and green, she even tucked in some Pitt Pastels in assorted colors too! There are beautiful papers by Webster, and Pinkpaislee as well as two packs of border stickers by Pinkpaislee too! If that weren't enough to make a girl swoon, there are also two flip notes filled with beautiful paper by Pinkpaislee and a Textural Accents Sampler by Faber Castell with gesso, gel medium and glaze samples! And to top it all off she included a few things from her personal stash like some bakers twine, some chipboard frames, pretty pink flowers, some ribbons and a couple more gelatos!! I mean talk about an embarrassment of riches!!

Look at all these Faber Castell Goodies!! Can you tell I will be having a great time using these in my art journal as well as on canvases and many other crafts?!

Beautiful Webster papers! Totally my style, especially these ones with the dress forms. I have special plans for these!

I have never owned any Webster paper and I am so excited to have such pretty ones to play with.

These are the PinkPaislee Borders, which are going to look wonderful with the paper she sent. Can't wait to create a layout with these.

This is some of the stash from the "goodie bag" she included. I don't know how well the color is reading, but there is a nice piece of purple ribbon, along with a red lace ribbon. See the pretty chipboard frames and the delicate pink flowers? I have several ideas for those already! And who wouldn't want more Gelatos? Yum!

Now don't get me wrong, I adore all the wonderful goodies she sent and I will happily craft using all of them, but it is truly the thought behind it that made my day. The fact that this very generous, very sweet, very kind new friend went out of her way to make this package up for me and send it. I don't believe in coincidence, as I have stated on this blog before. My friend Msgr. Fink always says, "a coincidence is a miracle God performs when He wants to remain in the background". Today I really needed to be reminded of how good people really are, and God used this wonderful friend to show me just that. She isn't wealthy, but she went out of her way to share these items with me because she knew they would please me, she shared what she had with me out of love and friendship. Isn't that what it is all really about?

Sometimes we think we can't really help others, we are too busy, we don't have any money, we don't know what to do. I am guilty of this at times too. But you know what? We all CAN help someone, and it doesn't have to be with material things either. We can smile at someone in the store, hold a door for stranger, call a friend just to see how they are doing, send a card to someone "just because", there are so many ways to make a difference each day and they don't have to big gestures. One of things I battle with the most due to illness is loneliness and isolation. Having someone reach out to me, whether it is via email, phone or in person is such a huge help to me. It reminds me that I am connected to the outside world beyond just doctor's appointments. It helps me to focus on things other than the physical and to catch up on what is going on with the other person as well.

This friend knows that I am struggling, with my health, with my finances and with a lot of things. She also knows that when I spend time creating it helps to take me out of those things and to put me in a place where I am free from some of those cares and concerns, even if only for a little while, so she sent me "get out of jail free card" if you will. She gave me the supplies to sit and happily create for hours, heck make that weeks, with all the goodies she sent! Think about how good that makes me feel. My friend cares enough to want to show me that she cares, to do something that will help me help myself and she gave of herself freely and without expectation.

Think about how you can be a blessing to someone else today. Think about how you can do something for someone else on a regular basis, again, it doesn't have to be big or expensive, it just has to come from your heart. If the person is someone you know well, then think about what would make them happy or be a help to them, like my friend did for me. If it is a stranger, just offer them the gift of your sincere attention, even if it is only for a few moments. People know when you are genuinely interested or just faking it. If someone shows a real interest, it can make their day!

Thank you dear friend, for reminding me of all the good in the world and in my own life. I am so blessed to have a friend like you and I hope that in some small way I can repay the kindness when you need reminding of the goodness of others.

Cottage in the Oaks - Great Blog is Having a Great Giveaway!

noreply@blogger.com (Maureen Hayes) — Thu, 19 Apr 2012 12:09:00 +0000

One of my very favorite blogs, Cottage in the Oaks, is celebrating her one year blogoversary with a fantastic giveaway! Make sure you head over and enter to win. But before you do that, take some time to check out her blog, it is really amazing. I love her sense of style, which I would describe as beachy/cottagey (I know that isn't a real word, but you know what I mean!). She writes about crafting, food and general interest things. I always look forward to what she has to say and what new idea she has come up with! I am constantly amazed at the level of creativity she has and am in awe. I have copied many of her projects and her tutorials are easy to follow and photographed well, which is not true of all blogs. She also has an amazing Etsy shop, so make sure you check that out as well.

Okay, I think you can tell I am a true fan of the blog, but I know you want to hear about the giveaway, right? Who doesn't want the chance to win free swag?! Well, I will give you a tease about what she is offering, but you have to head over here to see it all! I will say it is valued at over $500, which is a very generous gift to her followers.

Some of the items included in the giveaway are; A mini tabletop French cafe chalkboard, A European grain sack Candle jar cover, A set of four EAT napkins and A personalized leather cuff to name just SOME of the beautiful things included in this package!

You're welcome! :-)

Still Kicking

noreply@blogger.com (Maureen Hayes) — Sun, 15 Apr 2012 10:36:00 +0000

Hi out there in blogging land! I haven't been posting for quite some time, and frankly I hadn't even been following other blogs regularly for some time. Those of you who are ill will understand. Sometimes life gets in the way. Mom has been very ill and that has taken most of my "healthy" hours in a day. I recently started to follow some great blogs again, but this time more in the crafting/DIY/home decor/food genres. I have begun crafting again after a long hiatus and was looking for inspiration and fellowship with other crafters. I think I was also looking for a break from being identified as chronically ill. Nothing has changed in that regard, if anything it has gotten worse, but I am choosing to focus on other things. At some point, hopefully in the not too distant future, I plan to start another blog that will be more along those lines. I do not intend to hide my illness, just not make it the focus of the blog as it was here. I will keep this blog, but I won't be posting as regularly as I was when I was active with it. I intend to keep in touch with my chronically ill blogging friends, I just need to express my creative side in a different way right now and I hope you will understand. I also wanted to write this post for those of you who may have gotten my blog information when I commented at your blog and came to follow. Feel free to follow, or feel free to wait and follow when I start the new blog up. Thanks! I appreciate everyone who has taken the time to read my posts,comment or even keep me in their prayers - it means more than I can ever express!

Must Read Books by Cleo Coyle

noreply@blogger.com (Maureen Hayes) — Fri, 18 Nov 2011 05:11:00 +0000

I have been completely enthralled by a new (to me) author with two series of books. The author in question is Cleo Coyle and the first series is known as the "Coffeehouse Mysteries". The writing is the best I have ever come across in this genre, the characters are fully formed, the plots tight and you really cannot figure out who the killer is before it is revealed at the end of the story. Now, with being ill so much I am more than just a casual reader, I am voracious. I am also picky. Sure sometimes I want a fluff "summer read", but mainly I am looking to be transported and entertained. This series hasn't failed me yet. The books all center around a NYC coffeehouse run by a barista with a heart of gold named Clare Cosi. Clare not only knows coffee, she also happens to be pretty good at solving crimes as well. It may seem far fetched, but I promise you that from the first page you will be enchanted. Before I became ill, I actually worked as a private investigator, so I feel a special affinity for Clare. And of course being a New Yorker, I love reading about places I know. Bt of course you don't need to a New Yorker or a PI to appreciate good writing. The author of this series also writes under the pen name Alice Kimberly. That series is called "The Haunted Bookshop Mysteries". Again, you won't be disappointed. My Coyle/Kimberly writes along with the help of her husband Marc, and a more perfect writing duo I don't think exists. To learn more about these series and this author, check out her website at www.coffeehousemysteries.com/. Trust me, you will be glad you did! As a side note for all of my regular readers, especially my chronically ill friends, I want to let you know that I will be heading into the hospital tomorrow to try to get an adrenal issue under control, as well as a possible diagnosis on some other illnesses. I know my blogging has been terribly spotty, and I truly hope that once things get resolved I will be able to resume posting on a more regular basis. I miss all my cyber friends and I think of you all and pray for you regularly. Please keep me in your thoughts and prayers as well. I hope you all have a wonderful Thanksgiving and are AWAP (as well as possible).

I Need Your Help!

noreply@blogger.com (Maureen Hayes) — Mon, 27 Jun 2011 15:51:00 +0000

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!

Am I the only one who just doesn't care about Facebook?

noreply@blogger.com (Maureen Hayes) — Wed, 30 Jun 2010 00:17:00 +0000

I think there might be something wrong with me. At least if how everyone else seems to communicate is any indication. I have tried to care about Facebook and Twitter and the other social networking sites, but I just can't seem to work up any real enthusiasm for them. Am I the only one who feels this way?

Yes, it is true that you can find (or be found by) almost anyone from your past (which is a double edged sword if ever there was one, but that is for another post. . .), but I just can't get that excited by what someone else is watching on TV or eating or thinking every minute of the day. I don't mean to offend anyone if they really enjoy logging in and sharing this information, it just isn't my cup of tea.

I have been thinking about social networking a lot these past few days, mainly because my sister was just here for a visit. We haven't seen each other in over 2 years, so it was wonderful to get together and spend some time with each other. My sister is really into Facebook, so much so that she doesn't e-mail anymore and if I want to find out what is going on with her, I have to check her wall. She also is big into text messaging, and I don't text at all. I think I would hear from her much more if I did text, as she seems to communicate almost solely this way. I've noticed it more and more with everyone. I feel a bit like a dinosaur when it comes to technology. I just don't want to be that connected all the time.

I also wonder if this is due more to my illness. I have always been an extremely social person, outgoing and enjoyed being in touch with others. That has definitely changed as my illness has progressed. Since I generally only have about 4 good hours in any given day I am much more careful in how I spend them. Of course I have things I must do, chores, doctor's appointments, errands and the like. You know what I mean, all the stuff we all have in our lives that takes up time but might not be how we would like to spend it if we had a choice. So some days I have to do those things, and I can't do those and be social in the same day anymore. It isn't physically possible for me. Then there are the things I want to do, which of course includes seeing friends. I guess I would rather see someone in person than check in with 100 people on Facebook. To me the one to one contact is so much more rewarding, and since I am limited in how much I can socialize due to health issues, I want more bang for my buck so to speak. I know other chronically ill folks feels the exact opposite, they feel that they can keep up with more relationships by having Facebook or Twitter as a tool for communicating. I get that, I just feel it is more superficial.

In the end, we all have to make the choices that work best for us. I know there are some people who I will not hear from if I don't use these sites, and it makes me sad, but I miss the days of the handwritten letter and the phone call. I will always be a person who values substance over quantity.

What about you? Do you feel that Facebook or Twitter or texting has been a help or a hindrance in staying in touch with friends and family? Do you miss the older methods of communication, or do you think the advances in technology have far surpassed the downsides? Let me know what you think. . .

I'm Back!

noreply@blogger.com (Maureen Hayes) — Fri, 21 May 2010 01:23:00 +0000

Thought you'd finally heard the last of me, eh? No such luck! Seriously, it has been so long since my last post there were times even I wondered if I would ever post again. Too much time has past to try to catch up in one post, and I couldn't put you through all of it anyway. . . suffice it to say that things have been rough and time precious, so posting took a backseat to surviving. I know you all understand that.

I have missed my on-line community so much. I want to thank everyone who e-mailed or left comments just to let me know they cared and they missed me. Whether I was able to respond or not, it meant the world to me. Your prayers and good thoughts kept me going and I am a lucky person to have even one person who reads my blog.

I intend to start back to posting fairly regularly now, probably not daily as before, but at least weekly. There is much to catch up on and I hope some of you are still listening. I know I owe pics of the kitties (who are so big now it is unbelievable) and I will upload them with the next post.

I Had Twins!

noreply@blogger.com (Maureen Hayes) — Tue, 17 Nov 2009 00:54:00 +0000

Caught your eye with THAT title didn't I? Well, it is true, but not in the way you are thinking. Mom and I adopted two adorable kittens this past week. We have a girl who is 4 months old and a boy who is 3 months old. They make us laugh and keep us going when we feel like we can't take anymore.

I will post pictures tomorrow (assuming Blogger allows me to login again, it seems to be giving me trouble lately) as well as try to post an update on what's been going on here. I miss all my bloggy friends and appreciate those of you who have written to see how we are doing while I have been sick and away from posting.

Pain Blog Carnival Is Up!

noreply@blogger.com (Maureen Hayes) — Wed, 30 Sep 2009 23:18:00 +0000

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.

Thank You

noreply@blogger.com (Maureen Hayes) — Sat, 26 Sep 2009 23:12:00 +0000

I want to thank everyone who has been praying for mom and I, as well as those who have sent good thoughts and kind words our way. Mom's eye's are itching terribly since the surgery and we don't know whether it is a reaction to the ointment we are using or just from the surgery itself. So far she is doing alright, although she isn't getting much sleep so that is wearing her out.

I am developing either the flu or a good sinus infection, or quite possibly both. That isn't such a surprise given the physical and emotional stress I have been under, but it doesn't make being the caregiver any easier. It will be weeks before mom can drive again, so I am it for now. Yesterday for her follow up appointment we only made it by the grace of God as I was so nauseous that I was holding a basin to get sick in the whole way there and back.

Please continue to keep us in your thoughts and prayers, it is the best medicine we can both receive and we truly appreciate it.

Prayers For Mom

noreply@blogger.com (Maureen Hayes) — Thu, 24 Sep 2009 02:11:00 +0000

I am writing tonight to ask you all to keep my mother and I in your thoughts and prayers tomorrow as she has surgery to correct a problem with the muscles around her eyes. She will be having the surgery in the afternoon and I will be caring for her at home after. It is always difficult when someone you love has surgery, and I have had such a bad time lately with my own health, that being the caregiver right now is particularly hard. Please send prayers and good thoughts our way and I will try to post either tomorrow or the next day and let you know how it all went.

What A Diaster!

noreply@blogger.com (Maureen Hayes) — Tue, 22 Sep 2009 14:26:00 +0000

One of the nice things about having a blog is that it gives me a place to vent my feelings. I plan to take advantage of that today, so if you aren't in the mood to hear my rant you'll probably want to skip this post.

I had an appointment EARLY this morning with a new specialist who came highly recommended by another specialist whom I respect and like. I have been having a lot of health issues and was really hoping that this doctor would be part of the answers I am seeking. Although exhausted I spent time last night making sure I had all of my information together in an organized fashion so I would be prepared today, because early morning isn't my best time.

I got to the appointment early since I hadn't been sent any paperwork to fill out and I wanted to be ready at the scheduled time. No one was there until after my scheduled appointment. I was finally able to sign in and received the appropriate clipboard full of nonsense we all fill out each time we start with a new doctor. I patiently filled everything out, adding my typed sheets of illnesses and allergy/medications. I even had my insurance card clipped at the top for the clerk. Eventually I was called back into a room where I waited about 20 mins. before a resident entered and proceeded to take a history from me and ask why I was there today. I pointed out my typed sheet of current complaints that brought me in. In fairness, the resident did her best to get a complete history and to try to hone in on the main issue I was there about. She left after about 45 mins. to go copy some records I provided her and to bring the doctor in.

The doctor poked her head in about 5 mins. later, looking for the intern. The doctor was a bit short and rude, but I gave her the benefit of the doubt. When she and the intern finally entered the room, the doctor made it clear that she was not happy that my mother was in the room with me. As a side note, I had asked my mom along for a couple of reasons; I needed the support and help physically getting there, I wanted another set of ears and also someone who could help to back up what I was saying because my mom and I live together so she is quite aware of what is happening with me and finally because my mom is looking for this particular type of specialist herself, and this would give her a chance to see the doctor at work and decide if she might be interested in seeing her.

The doctor was rude and impatient with both myself and the resident. She did an examination of me that literally had me in tears from the pain, and she not only ignored this, but told me calm down so she could hear my breath through the stethoscope! No "I know this may be painful, but I have to do it, sorry" from this one!

She then proceeded to fight with me about my illness, about medication I am on for another condition and to ignore my repeated requests that we deal with a specific issue I had come about that is concerning me.

Finally I had had enough and I got up off the exam table and said, "obviously this isn't going to work out, we clearly aren't going to be able to communicate or work together". I slipped on my shoes and watched as the resident picked her jaw up off the floor. The doctor was happy to see me go, she had made up her mind before walking in the room that I was a "problem" patient and she had no desire to help me.

Although this isn't the first such experience I have ever had, I have to say each time it happens I am truly upset. I feel cheated. I wasted my precious energy on this idiot. Now I am still dealing with the problem that sent me there, but I am also in terrible pain from her "examination" and I am exhausted, emotionally and physically, from the whole ordeal.

This is the type of thing that a healthy person could probably shake off quickly, but because I deal with so many doctors and have such limited energy it becomes upsetting and frustrating for me. I will have to try again with another doctor, but for today I am headed to bed in the hopes I can put the whole horrible incident out of mind and get some rest.

Congrats Lisa Copen et al. . .

noreply@blogger.com (Maureen Hayes) — Mon, 21 Sep 2009 18:45:00 +0000

Well it was another wonderful Invisible Illness Awareness Week thanks to Lisa Copen and Rest Ministries. I listened to almost all of the conferences live and was lucky enough to be able to call in ask questions of several of the speakers. I know I got a lot of really terrific information, and I know that many others have as well. The great part is that all the conferences are archived on Blog Talk Radio, so they are available at anytime for you to listen to. You can even download them all for free at ITunes and listen to them on your IPOD or MP3 player if you don't want to listen to them on your computer.

There were lots of talks on a variety of topics, but I wanted to mention in particular a few that I really enjoyed:

"Helping Others Understand Your Pain" - Karen Richards - Karen had great advice on not only speaking with family and friends, but also how to communicate with your medical team. I know I learned a lot, and I am a chronic pain patient and am used to speaking about this topic. Just goes to show you that you can learn something new each day.

"It's Okay To Say No: Building Healthy Boundaries" - Jenni Prokopy - A really terrific talk, whether you live with chronic illness or not, because, let's face it, we all need help setting boundaries. I loved how she managed to share her personal experiences and provide humor to help you cope. A perfect example is her "it's not my monkey" philosophy (a great tease because it's worth a listen just for this!).

"Finding A Heart Of Gratitude And Joy Despite Illness" - Maureen Pratt - Loaded with examples from scripture, this talk was inspirational without feeling unrealistic. This is another topic that we all struggle with lifelong, so it was great to hear Maureen's take on it and I learned so much. One point in particular that stood out to me was when Maureen said "How we behave and act toward our illness is going to affect how others see our faith". If that isn't a good reason to try harder, I don't know what is!

"Understanding How We Uniquely Deal With Difficulties In Life" - Georgia Shaffer - A terrific talk that made me think about how our personalities shape our reactions, which was something I hadn't given much thought to before. She provided some really concrete ideas of how to deal with others, as well as ways for us to cope with others reactions. A gem that I walked away with from Georgia was "Allow people to do what they are able or want to do, not only what you want or need them to do". That sounds so obvious, but how many times do we waste energy trying to get people to do what we want, instead of accepting that maybe we need to find another person to meet that need, or just being grateful the help that they are offering?

"Having Your Own Business When You Are Chronically Ill" - Lisa Copen - Lisa had to jump in and handle this conference when she had two last minute cancellations from speakers who had personal emergencies. I found her talk fascinating. She has done this herself, so she knows of what she speaks. She had terrific, specific advice that I haven't heard from other speakers, and this is a topic I have a real interest in. I don't know how she managed to do all she had to this week, in addition to jumping in and hosting conferences and being so prepared. She's my hero!

"Coping With Crises On Top Of Chronic - Chat With Two Gals Who Understand" - Jennifer Saake and Lisa Copen - This was a fantastic talk. I have never seen this topic covered anywhere else and it is so true of our lives. Just because we have chronic illness and each day is a challenge, doesn't mean we don't deal with all the regular crises that happen to everyone, from job loss, to the death of a loved one. Jennifer Saake is a wonderful speaker who gave a list of coping skills that anyone can practice and use to help them cope when life is overwhelming. Again Lisa and Jennifer both shared personal stories that help you to know they get where you are coming from and really care about each one of us.

I encourage you to listen to ALL the conferences, as well as to keep up with the Invisible Illness website as well as Rest Ministries. Many of the speakers have their own websites, including the speakers I have talked about above. I have links to Jenni Prokopy's site ChronicBabe on my blogroll, as well as Jennifer Saake's site Harvesting Hope From Heartache. Maureen Pratt and Georgia Shaffer also have their own sites, which have lots of valuable information.

30 Things About My Invisible Illness You May Not Know

noreply@blogger.com (Maureen Hayes) — Tue, 15 Sep 2009 17:28:00 +0000

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Chronic Pancreatitis, CFS, Endometriosis, IBS, Raynouds Syndrome, Arthritis, Adrenal Insufficiency, Blethoritis, GERD, etc. . .
2. I was diagnosed with it in the year: 1996
3. But I had symptoms since: Youth
4. The biggest adjustment I’ve had to make is: Not being able to work
5. Most people assume: I am healthy and happy
6. The hardest part about mornings are: The pain, stiffness and fatigue
7. My favorite medical TV show is: Hawthorne
8. A gadget I couldn’t live without is: My Computer
9. The hardest part about nights are: The pain and the loneliness
10. Each day I take 14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Don't have a lot of experience with them
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I have none due to illness and this is extremely hard, not only financially, but on my self image as well.
14. People would be surprised to know: How much I hurt and how isolated I feel.
15. The hardest thing to accept about my new reality has been: That I can't be the person I wish I could be, or even have been in the past.
16. Something I never thought I could do with my illness that I did was: Take care of my mother
17. The commercials about my illness: Don't represent what it is really like to live with them
18. Something I really miss doing since I was diagnosed is: Being spontaneous, being able to do what I want, when I want without having to weigh the costs.
19. It was really hard to have to give up: My privacy and freedom
20. A new hobby I have taken up since my diagnosis is: Scrapbooking and writing
21. If I could have one day of feeling normal again I would: Do all the things I miss doing and treasure the memory of what it felt like to be healthy.
22. My illness has taught me: To be patient, compassionate and empathetic to others
23. Want to know a secret? One thing people say that gets under my skin is: "But you're too young to be so sick" or "But you look too good to be so ill"
24. But I love it when people: Really listen and make it clear that they love me for who I am now
25. My favorite motto, scripture, quote that gets me through tough times is: "Be kind, for everyone you meet is fighting a great battle" -Philo of Alexandria
26. When someone is diagnosed I’d like to tell them: Have hope, stay positive and get as much support from others as you can.
27. Something that has surprised me about living with an illness is: How much it affects every aspect of my life.
28. The nicest thing someone did for me when I wasn’t feeling well was: Ask ME what I needed and then did it, or just did something wonderful without being asked.
29. I’m involved with Invisible Illness Week because: It is important to raise awareness and to advocate for all of us.
30. The fact that you read this list makes me feel: nervous, but hopeful that you will understand me a little better for having taken the time to listen to what I have to say.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

And Away We Go!

noreply@blogger.com (Maureen Hayes) — Tue, 15 Sep 2009 01:37:00 +0000

Well the first day of Invisible Illness Awareness Week has just ended. I hope you were able to take some time and listen to a conference (or more!). I was able to listen live to the first two conferences:

Georgia Shaffer - Understanding How We Uniquely Deal With Difficulties In Life
Maureen Pratt - Finding A Heart Of Gratitude And Joy Despite Illness

Both talks were wonderful and I took away a lot of information and food for thought. I was even able to call in and ask specific questions of both hosts, which I found exciting and extremely helpful. I really encourage you to "attend" the conferences or listen to them in archives, there truly is a speaker for every need.

It's Almost Here!

noreply@blogger.com (Maureen Hayes) — Mon, 14 Sep 2009 00:02:00 +0000

Only a few hours remain til the official start of Invisible Illness Awareness Week and the group of conferences sponsored by Rest Ministries, ChronicBabe, et al. . . Please take a moment to look at the schedule of speakers and mark off the ones you must hear live, as well as those you will listen to via Blog Talk Radio's archives. This is a wonderful opportunity for everyone to be able to "attend" a top-notch conference about living with illness. There is no charge and you don't have to leave your home (heck, you don't even have to change out of your pj's if you don't want to!) to be part of this event. Simply click on the link above for Invisible Illness Awareness Week and you will be directed to the home page. Follow the instructions for listening to the interviews, and take some time to read the blog posts and other information available.

See ya there!

Patients For A Moment is up at Getting Closer To Myself

noreply@blogger.com (Maureen Hayes) — Thu, 10 Sep 2009 03:25:00 +0000

I just wanted to let everyone know that the latest edition of the blog carnival Patients For A Moment is now up over at Getting Closer to Myself. I want to thank Leslie for her hard work in hosting and putting together this edition of the carnival, as well as for including my post in it! Please take some time to head over and read some great writing!

Pitting One Illness Against Another

noreply@blogger.com (Maureen Hayes) — Tue, 08 Sep 2009 01:45:00 +0000

As I read the blogs of so many people affected by chronic illness, invisible or not, I find that although we all have so much in common, there seems to be a faction that tries to pit one illness against another. It's almost as though some people feel the need to claim that their situation, pain, symptoms, etc.. are worse than others and therefore more important.

The truth is we can all learn from one another and be a support to one another. I hate to see nasty infighting wasting peoples valuable energy. Why does it have to be a constant battle of who is more miserable? It seems to me that there is plenty of misery to go around.

The blogs (and people) I am drawn to are the ones who are passionate about helping themselves and others. While it is certainly admirable to raise awareness and even funds for medical research about your illness, you mustn't lose sight of the larger picture. Numbers vary, but there are at least 76.5 million people in the US suffering from chronic pain alone. If we band together we are much more likely to be heard by the mainstream and to bring about change that will affect all of our lives in a positive way.

In one way I am lucky, if you could call it that, because I suffer from multiple illnesses, so I am pretty much accepted by most groups. But if you have one illness or twenty, it is still frustrating, scary, painful and life-altering.

As we head into Chronic Illness Awareness Week and National Pain Awareness Month, let's try to put aside our differences and focus on all we share in common. We all would like for people to understand us better and what we live with on a daily basis. We all would like to see better health care that helps to prevent illness instead of just putting a band aid on a huge problem. We would all like to be treated with respect and dignity and to raise awareness. If we focus on the things we all share in common, we can accomplish so much good, and whether that good involves a "cure" for my particular illness or not, that's a legacy I want to be part of!

The Caregiver Role

noreply@blogger.com (Maureen Hayes) — Fri, 04 Sep 2009 16:41:00 +0000

As Invisible Illness Week approaches I find myself reflecting on the caregivers in my life. It is so easy to get caught up in my own drama, whatever is going wrong at the moment with my health, the things it causes me to miss out on, etc. . . we all know the drill. But what about the people who are there for us everyday? Do we take the time to really appreciate what they go through? I know I don't - at least not as often as I should. Chronic illness has made me selfish at times, something I don't like to admit out loud or even to myself. I tend to see how my illness affects me, while ignoring what impact it has on my loved ones and friends. I get angry when they don't understand everything the way I want them to. I expect them to always be available and willing to help. That isn't only unrealistic, it is unfair.

I happen to live with my mom. We are caregivers for one another, each one doing what we can for the other as our own health problems allow. It is all to easy for me to forget the terrible toll it takes on my mom to watch me when I am in pain, or scared and frustrated, or facing yet another painful test or procedure. She is first and foremost my mom, she loves me and wants to protect me from all bad things. That isn't possible when someone is chronically ill. As much as we might wish someone could wave a magic wand and make things all better, it isn't a reality. While I know this, and of course my mom knows it on an intellectual level, I can see the pain in her eyes when she can't "fix" things for me. Sometimes I get angry, thinking why does she need to fix this, why can't she just do what I ask of her right now and let it go. That's the selfish part of me, the one who hurts and wants her needs met NOW. But if I step back and look at my mom, I realize that my being ill has changed her. She looks older and more frail, the result of lots of worry and sleepless nights more than product of aging.

I guess what I am trying to learn, and maybe to pass on to others, is that we have to be very careful to remember that the people who care for us, who are our caregivers, are people too. They have feelings and emotions about our illness that are their own, and they have a right to those feelings. They have a limit - physically and emotionally and we must always be mindful of that limit and not push them beyond it. If we want others to respect and understand our boundaries, we have to offer that same respect and understanding back. I am trying to look at things from my mom's perspective more often. I think about how scared and frustrated SHE must feel watching me suffer and not being able to do a lot to alleviate it. I find myself in awe of her strength and love, the kindness she shows me with all the little things she does for me everyday.

Whether your caregiver is your spouse, your child, your friend or even a hired helper, you need to take a hard look at the PERSON behind the role and acknowledge their dignity, their struggles and their feelings. Put aside your own needs, even if only for a few moments, and be grateful for your caregiver. Say a prayer for them, ask God to grant them strength, peace and to bless them abundantly for the loving care they provide. You will find yourself having a much better relationship if you allow for honest communication between yourself and your caregiver. Make sure that the person who helps you gets some time and attention for themselves.

During my recent flare my mom was home with me round the clock the first week, and I finally had to order her to resume attending her senior center activities. She needed to have someplace she could go to get away from the situation for a little while. Somewhere that she could meet with her friends and talk, or just laugh and do something fun for herself. It wasn't doing her, or me for that matter, any good for her to sit around the house day and night watching me hurt. I felt better when I knew she had something good to look forward to, and I think she felt better knowing she could take a break from caring for me and just be herself, not my mom, not my caregiver, just the woman she is.

It is so easy to take our anger and frustration and hurt out on the people who are closest to us. It is easy, but so dangerous. These relationships are much too important not to nurture. Take a moment today to think about how hard your caregiver works to make things better for you, and then make sure you let that person know how much you appreciate them and all they do. A little kindness goes a long way.

I won!

noreply@blogger.com (Maureen Hayes) — Tue, 01 Sep 2009 21:56:00 +0000

I am a voracious reader, and my recent flare has given me a chance to indulge this pastime even more than usual. I love many genre's, but am huge fan of the Classics, especially of Jane Austen. I have read and re-read her works, watched the BBC's mini-series on Pride & Prejudice too many times to speak of, and have enjoyed biographies and books written about the characters and stories Jane Austen created. I came across a wonderful site by another blogger, who shares both my love of reading and of all things Austen. Her blog is called The Written Word and I encourage you to check it out. The blogs owner, Stephanie, had a contest going linked to an interview she had done with author Laurie Viera Rigler, who wrote Confessions of a Jane Austen Addict as well as Rude Awakenings of a Jane Austen Addict. I entered and was lucky enough to be selected as one of three winners who will receive a copy of each book! This was just the pick-me-up I needed while feeling so awful physically! I want to thank Stephanie as well to encourage others to check out her site and the 2 books written by Laurie Viera Rigler.