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.

Life Lessons Part 4

"Being loved is not just about giving, it is also about receiving"
-- Anne Hathaway

SECRET # 4

In order to love others, you must first love yourself!

• The picture of the bee and the flower above reminds me of the symbiotic relationship of love. Just as the bee needs the flower for its pollen to make honey, so the flower needs the bee to pollinate and spread the growth of the flower. Each one needs the other and also offers the other something in return for what it takes.

• We've all heard the example of the parent flying with a child and the oxygen mask. In the case of a sudden loss of cabin pressure the parent is advised to place their air mask on first, before placing one on the child. This is because the parent needs to be alert and able to help the child, and if they aren't receiving oxygen and lose consciousness, neither the child or the parent has much chance to survive. The child depends on the parent to do the right thing in caring for him. It is really the same with ourselves, though I think those of us with chronic illness sometimes have a hard time seeing it that way - we must first take care of ourselves before we will be able to take care of those we love who depend on us. Sounds very much like 'In order to love others, you must first love yourself' and it leads me back to the quote from above, 'Being loved is not just about giving , it is also about receiving'. Why do we find it so easy to give our love, our time and our precious energy, but we find it so hard to accept that same love, time or energy from others? Worse still, why do we think needing help (or love) makes us weak?

• At the end of the last lesson I asked you to think about the people and things in your life that make you feel good, I called them your lifelines. I talked about the fact that we all need to feel needed and useful. I want you to create a list of people and of things, whether they are actual items, hobbies, activities or interests that make you feel good, needed and useful. After you have created this list I want you to start finding ways to incorporate these people and things into your life every single day. It doesn't have to be the same person or thing each day, it doesn't have to be for a large block of time, but it has to happen each day.

• One thing I learned about myself is that since I no longer am able to work I was having a hard time feeling needed, I felt I lacked purpose. I started to volunteer at a local Alzheimer's respite program one day a week for about 4 hours. I LOVED it, and it gave me a sense of purpose, made me realize that I could still help others and filled my spirit. It also took me out of myself and my own problems, my pain and fatigue. Eventually, as my health deteriorated I was unable to keep volunteering because I wasn't able to make it on a regular basis. Instead of feeling defeated or useless, I found another way to make a difference. I contacted a charity and asked what type of help I might be able to provide from home. They were in need of someone to collate and stuff mailings for them. While it isn't fulfilling in the same way, I am doing something that helps others and at the same time I am getting myself out of my own head for awhile. This is just an example, it doesn't have to be volunteer work, it can be a hobby - I like scrapbooking and photography. When I feel particularly bad I enjoy taking out a scrapbook of vacations I have taken or friends and family and looking through it. It reminds me that I DO have better days, I have people who love me and I have had experiences that I enjoy. This gives me power over my illness because I refuse to let it define me, even when I am in a flare and unable to do much of anything.

• Are you starting to make the connection between loving yourself first before you can give love to others? If I don't allow myself these things I get the feeling that I can't do anything anymore, that I am not worth loving. When I make time to allow myself to see how special I am, I realize that I deserve to be loved. Then I am able to ask for help, if I need to, or simply to enjoy a friends company because I know I am worthy. Because I do this on a regular basis I am able to be loving and supportive with my friends and family. I am not running around on empty with nothing left to give to others, because I fill up daily by loving myself first. It isn't about being selfish, it is about realizing that I matter enough to take care of myself. We looked at making a self - care plan in the first lesson, but that dealt with more practical things like laundry, cooking, shopping and house cleaning. This type of plan deals with things that are equally important but tend to get pushed to the back burner.

Also in this series:

Life Lessons Secret #1 - Never Forget Who You Are And Never Let Illness Define It!
Life Lessons Secret #2 - Prepare And Implement A Self-Care Plan!
Life Lessons Secret #3 - Be Honest And Gentle With Yourself!

Life Lessons Part 3

Nobody loves being around someone who complains all the time. That's why this picture of my kitty makes me laugh, she was always willing to make her feelings and needs known. Sometimes she was quite demanding! Does that sound familiar at all?
This doesn't mean you must "suck it up" or deny how you feel. This means taking responsibility for our behavior, and not looking to others to make things better for us. The power is within us, if we learn how to be honest and gentle with ourselves.

"It is the ability to choose which makes us human." - - Madeleine L'Engle

Secret # 3

Be Honest and gentle with yourself!

The quote by Madeleine L'Engle hit home with me. So much about being chronically ill feels out of our control, but we still have choices, so choose wisely :

• Being honest with yourself isn't always easy. Sometimes it means admitting you can't do things you used to be able to. Other times it means admitting that if you tried harder you probably could do more. That's where the being gentle part comes in. This isn't about beating yourself up, it is about taking an honest appraisal of yourself. What things has illness changed? That's a big question because we tend to focus on the physical changes, but for now I am talking about the emotional ones. Are you less outgoing than you used to be because you don't have the energy to put yourself out there like you once did? If you have kids, do you find yourself feeling guilty for not being able to do all you would like with or for them?
  

• Now it gets even harder because you have to answer a question most of us would rather not - what are you avoiding or using the illness as an excuse to hide from? I know this question will rub some people the wrong way, especially because we have so many people blaming us or not believing we are ill when we really are. I am not trying to say that illness hasn't changed you or that it isn't real. I do know that if I am honest with myself though, there are times when it is easier to avoid something unpleasant and blame it on not feeling well, being too tired, etc. . . I don't do this consciously, so it is harder to catch it in the moment than other things. But if I really sit down and look at myself I know that some days, even though I really am tired and hurting, I could also push through a little bit. Maybe I don't because the thing I need to do isn't fun, or it's scary or I don't like the person involved. Whatever the case is, I need to be honest with myself.

• Once you've identified the real ways in which your life has been impacted by your illness as well as the ways you've perhaps hidden behind your illness to avoid something, you can start to make changes. Just knowing what you can and can't do is empowering. If you really are too tired or in too much pain then there is no reason for a guilt trip! If you are avoiding something, look at why and take steps to address the reasons behind it. I'll give an instance from my own life, I used to put off paying the bills. I'd say I don't feel up to it, and there was some truth in that, but the real reason was, it upset me. There was never enough money and it made me feel upset and scared. Once I realized that was how I really felt, I took steps to address the fear. Now my bills aren't late simply because I am afraid to face my feelings! I don't have more money - I just changed the way I was approaching the task. You can do this too, whatever the circumstance is.

• Now I want you to start thinking about the people and things in your life who make you feel good. These are your lifelines. We all need to feel needed and useful. We need to laugh and focus on things outside of the pain and fatigue. Start a list of things you love to do, people who always make you feel good to have around and things you feel passionately about. We are going to use this list to start finding ways to care for ourselves emotionally and bolster our health. The great thing is that we are in control of this!
  

Life Lessons

"Life is a great big canvas, and you should throw all the paint you can on it."
-- Danny Kaye

There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:

SECRET #1

Never forget who you are and never let illness define it!

• Seize every opportunity you can to have fun and to connect to the parts of yourself that make you who you are. It is easy to get bogged down in the day to day minutiae of the chronic illness grind - the doctors, the medications, the pain and fatigue.

• Take a play break, make a snow angel, color a picture, sing your favorite song out loud, call a friend and laugh, whatever connects you to the happy you. I don't promise you it will make everything all better, but when done regularly it will help to remind you there is more to you than illness.

• Sometimes just knowing that helps you to go on, and once you go on, you tap into the real parts of you that have always been there - these are the parts the illness seems to have stripped away.
  

• You may have to get creative here, illness can and does have a very real effect on our bodies, but you can find things you CAN do - celebrate your abilities, don't dwell on your disabilities!
  

A Day In The Life of Maureen

Happy Holidays all! I have had a rough couple of days, so I haven't posted in a bit. It seems no matter how long you have been ill, and no matter how many times you think you've learned your lessons, there are always new ones to learn.

I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?

The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.

Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.

So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .

My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!

My Arch Enemy Makes A Return

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

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

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

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


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

For John McCain
For Barack Obama

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

Flare Care

As all of us with chronic illnesses know, some days are better than others health wise.  I am in the middle of a particularly painful flare right now.  Fortunately I have learned over the years to expect these times, and I have certain self care strategies in place to make things more bearable.  If you have lived with any illnesses for a long period of time, you probably know what I am referring to.  If you are new to the world of chronic illness and it's rapidly changing ways, then now is the time to start making your own list of "survival" strategies.  They can range from the very practical to the very whimsical. 

The type of flare I happen to be experiencing right now is made much worse by things like eating, moving or even talking too much.  Because I know this about myself, I have learned to always keep certain foods that I can usually tolerate small amounts of, around the house.  Since staying hydrated means staying out of the hospital (my own personal number 1 goal!), I also keep things like gatorade, individual cans of caffeine-free Coke to flatten (settles my tummy better than most medications without the side effects), bottled or Brita water and an assortment of teas on hand to keep me sipping on beverages throughout the day.  I eat only when I must to take a medicine, knowing that as the pain abates, my appetite will return, and that I will not die from two days or so of improper nutrition.  I have certain pillows that I use to help maintain my position in bed, since I have to sleep sitting up when this happens.  I allow myself the luxury of just washing with a washcloth to avoid the movement and water of the shower, which really increases the pain.

On the less physical and more nurturing side of things, I find it hard to read much due to the pain and the medications I am taking, so instead of whatever book I might be absorbed in at the moment, I always have on hand some good magazine options, some puzzle books and even the occasional catalog.  It gives me something to flip through that doesn't require a lot of focus or thought, but takes my mind off of things for a few moments at a time.  I also keep a supply of funny DVD's, especially TV shows that I really enjoy (Friends, Mad About You, Gilmore Girls, Gidget, That Girl) anything that isn't too heavy and that makes me smile usually helps the pain as well.  I don't answer the phone unless it is necessary.  I use my caller ID to screen calls and let my voice mail pick up most of them.  That way I don't have to expend energy or cause pain trying to explain that talking makes things worse.

Most importantly, I listen to my body.  If anything seems different or strange from my usual "attack", then I contact the doctor.  After many years of going through this I am very good at gauging what will pass and what needs immediate attention.  My advice to anyone is "when in doubt, contact the doctor".  Much better to be safe than sorry that you mistook something more serious or needing immediate attention for just another flare or a new symptom of whatever your own illness is.

Lastly I practice meditation, biofeedback and use visualization.  All of these things can be learned and are helpful in controlling pain, as well as breaking the cycle of fear/anger/resentment that this is happening again.  I use them on a regular basis to help maintain my health, and as another tool when I am in the middle of a flare.  I can't say they make it "all better", but they make it more bearable.  By relaxing my body and my mind, it allows both to have the energy it needs to help me to heal.  Along the same lines, because I am a religious person, I pray.  I find that for me, knowing that God is there makes everything feel less overwhelming and brings me great comfort.

I would love to hear from all of you the types of "flare care" you employ for yourself.  As a group I have never met more creative or resourceful people than those who live with chronic illness.  I am sure we can learn a lot from one another that would be useful to our own situations.