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

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!

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!

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!

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

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

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!

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. . .

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

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

It's Almost Here!

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

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!

I won!

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.

September is Pain Awareness Month

I have blogged about my own experience of living with pain, both chronic and acute. Now I am asking you to do something to help me and the 76.5 million other Americans who live in pain. Please support the American Pain Foundations Power Over Pain Action Network in raising awareness and helping to dispel myths surrounding pain and the treatment of it. To find out more about what you can do, as well as to learn more about the organization, please go to Conquering Pain Together to get all the details on what you can do to help. There is an easy to use on-line petition you can sign, as well as a wonderful list of 10 things you can do in 10 minutes. Thank you in advance for your helps and attention in this most important matter.

Looking for Suggestions

Okay, so I am still in pain, and except for trips to the restroom I am pretty much bed-bound at the moment. I am watching TV and DVD's, I have been reading (as much as I can concentrate with the pain), praying and getting on-line very briefly. I have a puzzle book which I am going to give a try for a change of pace. I am wondering what all of you do when you are sick, in a flare or in pain to occupy your time and to try to take focus off what hurts? Thanks in advance for your suggestions!

Hurting

I've spent the entire day in bed, in terrible pain and unable to eat or drink anything much. I am grateful to have the new netbook which allows me to log into the internet at times like this, when I usually can't keep in touch. It helps to have the support and friendship of the blogging and chronically ill communities, especially when things aren't going so well. I am trying to keep myself from focusing on the pain by watching tv, reading and thinking about writing. Sometimes the pain is so bad I can't focus on much else, but the more I focus on other things, the sooner this too shall pass (I hope!).

Simple Pleasures

Anyone who knows me or my blog knows I love quotes. There is something about capturing an important idea in a pithy saying that gets me every time! Today I wanted to share one of my favorite quotes and talk about how I try to apply it to everyday life.

"It isn't the great big pleasures that count the most; it's making a great deal out of the little ones."
-Jean Webster, Daddy-Long-Legs

This quote is a powerful reminder for me that ultimately I control things. Take a moment to really think about that, especially if you live with chronic illness - because sometimes NOTHING feels like it is in our control. The simple truth is that we all have a choice to celebrate the simple pleasures each day, and no matter what the state of our lives, our health, our relationships - we all have pleasures each day. The quote reminds me that they don't have to be big, huge, monumental things, in fact, very often the most important ones aren't.

It is all too easy to get caught up in the negative and think of all the things we can't control, the things we can't do, the people we can't change. But, how about trying to turn that thinking upside down and looking at all the things that DO work, you CAN do something about - the pleasures that you already HAVE each and every day? It's easier to have a pity party and blame the world and complain that things never go right. Yes, it is easier, but it is also far more dangerous. When you overlook the simple pleasures you stop being able enjoy them. The quote talks about making a big deal out of little pleasures. I am not married and I don't have children, so my pleasures might be different than some of yours, but we ALL have them if we choose to look. Some of my pleasures include things I have control over and many of them include things I have nothing to do with. An example that springs to mind for me immediately is the beauty of nature. I can be on a walk in my neighborhood and be stopped in my tracks by a beautiful flower, an interesting tree or leaf or a particularly playful squirrel or bird. Just the other day we had heavy rains that left deep puddles on the sides of the roads. I was pulling my car out of the driveway and I noticed three little sparrows splashing around in the puddle. They were so cute as they bathed in that puddle that I simply stopped for a moment to enjoy watching them. It wasn't earth shattering, it didn't cure me of my illness, but it made me appreciate the beauty that is all around me if I take the time to notice it.

Another example from my own life is something I call "gratitude for what works". When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work. My eyes are really good, I don't even need reading glasses (yet!!). Although it hurts, I can walk all by myself, something many people can't do. Most days I can eat and drink most things, and after having met many of you who can't do that due to illness I am so grateful for it I try to always remember to be thankful. I have days where my pain makes it impossible to eat and I can barely drink, so the days when my digestion is working are truly a blessing and a pleasure I enjoy and celebrate. There are many other things, such as my brain, that work quite well, and I choose to focus on these to remind myself that there is much more that works than that doesn't.

Your simple pleasures might be the smell of your daughters hair right after her night time bath, the feel of the sun on your skin as you work in your garden, the sound of your favorite song on your IPOD as you commute to work, the look on your loved one's face just as you lean in for a morning kiss. Whatever your pleasures are, be thankful for them, celebrate them and make a big deal out of the "little" things that make life worth living. All the money in the world can't buy any of these things, and yet they are my most precious possessions.

And The Beat Goes On

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

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

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

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

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

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

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

The Ugly Truth

Again so much time has passed without my posting. The truth is that I feel so down I just haven't done it. There, I admitted what we (the chronically ill person) are NEVER supposed to admit, I am down. All of the past few months events have left me not only physically worse for the wear, but also emotionally and spiritually spent. It is really scary for me, I am not someone who gets down and stays there, I'm more of a "okay the pity party is now officially over, let's get up and do something constructive" type. The truth is I have absolutely no idea what to do.

My medication is not being covered again, so I am trying to find $1200 a month to pay for something I have to have to function, while the insurance company and my doctor duke it out. I have absolutely no control over the outcome, which is terrifying. In the meantime, I am also in the wonderful Medicare Part D "donut hole" so NONE of prescriptions are covered at all. This will continue until I pay $5500 out of pocket (oh did I mention I DON'T HAVE IT!). I HAVE to take most of my medications, for instance without my hydrocortisone my adrenals don't function. Not taking my medication isn't an option for me. Again, I have little or no control over this.

Each day seems to bring another health issue (no big shock considering what I am going through) which adds to the already enormous stress level. I am bone tired, dealing with all the physical issues, which range from systemic thrush, to a shoulder in need of surgery, to immune system issues to fevers is enough without the constant money problems, the fights with the insurance company and the never ending trips to the doctors. I want a day off. I want to not worry for 24 hours. I want someone else to slay the dragons for the day. It won't happen, but I can still wish for it, can't I?

So my posts have been few and far between. At least when I have the medication I can actually sit at the computer, without it I cannot for the pain is unbelievable in this position otherwise.

Most of my doctors are pretty good, but we have a health care system were each doctor is so specialized that they only focus on their particular area of expertise. I wish I had a good internist who pulled it all together and saw how one thing is affecting the other, but I don't, and despite many attempts to find one, I simply haven't been able to. I can't even get angry at the doctors, the system itself is so broken that they do all they can. The truth is that chronic illness isn't handled well in our country. We are a deal with it after the fact nation. We don't do prevention well. We don't take the time to study the effects of one issue on another.

Those of you with chronic illness will understand what I mean, and, I hope, those of you without may learn something new from my perspective. In the meantime, I will keep putting one foot in front of the other and praying for better days ahead. It's all I can do in the end, the rest is in God's hands.

The Perfect Storm

Most of you know I really TRY to see upbeat side of things, and although I get down, I don't stay there long. This recent episode has put all of that to the test and then some.

Yesterday I went to the pain management doctor. He changed my dose in an attempt to get things back under control after all I have been through. This in itself it upsetting, because before the insurance company messed things up, when I was on medication and stable, I was taking a dose that is half of what I am taking now. So thanks to all my body has been put through these past 4 months, I am on double the medication I was.

My doctor is an Orthodox Jew. I mention this because it has bearing on the rest of the story. I saw him yesterday afternoon, which is unusual for me, I usually see him early on Fridays, but because last night and today are both Jewish holidays he wasn't going to be working. He wrote my script and I headed straight to the pharmacy with it. I've learned my lesson well with this because if there is a problem and I wait to get it filled, they can't reach the doctor.

I arrived at the pharmacy to find their computer system down and them unable to fill prescriptions because of it. For those of you who are lucky enough to not need pain medication I can hear you now, "why didn't you just have it filled elsewhere?". Besides the fact that I truly believe that it is safer to fill everything at one place so they have an accurate record of all the medications I am on to check for interactions, etc. . . there is also the issue of taking a narcotic pain medicine. If you start filling prescriptions at different pharmacies, it raises a red flag with the government and your insurance company. They see it as "drug shopping", which is evidently something that addicts do in an attempt to get more of the medicine than they are supposed to have. In any case, I left the prescription with my pharmacist who promised he would fill it that night or first thing this morning, depending on when the computers came back up. In the meantime, he gave me 3 pills to get by until it was done.

This morning when I went to call to see if it was ready for pick up, I found a voice message in my inbox from the pharmacist. My insurance company was refusing to fill the prescription on the basis of number of pills prescribed in a 23 days period and (you can't make this stuff up folks!) they also had approved my medication in the brand form at the old dose, so I am now informed that my doctor will have to go through the WHOLE APPEALS PROCESS again for the new dose!

The reason I mentioned about my doctor being Jewish is that normally I could reach him and we could talk about what I might be able to do as an option, but as it is a Holy Day for him, I cannot reach him until Monday. This left mom and I trying to figure out what the best choice was, which ended up being buying the prescription outright for over $1200 on mom's credit card (this is a 30 day supply mind you!!). The other kicker to this is that the $1200 won't even count towards my "donut hole" because they haven't approved this medication now so as far as the insurance company is concerned it doesn't exist! That means I am still paying for 100% of ALL my medications while I am in the donut hole, not just my pain medicine.

I will have to contact the doctor first thing on Monday and get him working on the appeal, which I am sure will put a strain on relationship as it was an arduous task to go through once and neither of us will be happy to do it again.

In the meantime, I am where I always am, stuck in the middle with little or no control over any of the situation. I was reading Laurie Edwards blog post from A Chronic Dose the other day on illness and PTSD and thinking of how this situation makes me feel like I did two years ago when mom and I were forced to move back up to NY due to health problems and find a pain management doctor for me. We went through so much and it was so upsetting, and now it feels like that all over again. All the fear, the uncertainty, the frustration come back in waves. Even though I remind myself that it worked out then, it still scares me and makes me feel like I did back then.

I wonder how many of us go through this during really bad flares, etc. . . Right now my normally hopeful nature is being beaten down by the stress and fear, and I am more afraid than I have been in years. I also know my body and emotions are off kilter from all the medication changes. I just wish things didn't have to be so hard, and frankly at the moment I wish I had a partner or someone whom I could trust to handle all of it so I could just concentrate on getting well and not fighting the system day after day.

Advocacy

Since that was the topic I left off on before all this started, I wanted to pick up the thread briefly again to say I have been self advocating these past few months, and although it is exhausting and frustrating, it is so necessary! I don't have a spouse or significant other to take care of it for me, so I have to take care of myself. There are days I can't do it, I won't lie, but I try my hardest to fight for me, because let's face it, no one else will!

The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.

I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.

I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!