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!).

Whew, Is It Really only Tuesday?

Hectic week (again) with doctors. Tomorrow I am having a renal scan with Lasix, aren't you all jealous?! LOL!! Hopefully this will provide some answers as to what may be causing the nephritis and whether it is anything to worry about. I have a friend who has had the test, so I have a pretty good idea of what I am in for and I am NOT looking forward to it.

On the brighter side, tomorrow evening I am going to my first book club meeting. My girlfriend has been a member of this book club for years and is bringing me. I even read the whole book, 'The Flamenco Academy' by Sarah Bird, so I should be able to discuss it. I am looking forward to meeting all the other women and having some discussion that doesn't deal with medical tests, doctors or prescriptions!

Tonight we finally got all the Christmas decorations and the tree down and away. The is the latest I have ever had things up. It couldn't be helped, but it was driving me crazy. I am still on antibiotic for the sinus and ear infection. If that clears up, I am due to finally get this tooth pulled next Tues. The pain is incredible and I hope it all happens. I am so sick of doctors, tests and the like. I cancelled an appointment on Monday morning because my vertigo made it impossible for me to drive. The doctor called because he was upset that I had cancelled on short notice. I have cancelled on him before and I guess he thought I just didn't want to see him. I wish these doctors could get a sense of what day to day life is really like for us. I have reached a point where I really try not to schedule more than one doctor a day. I just can't do it anymore, physically or emotionally. And of course, I have my mother living with me as well, so I attend her appointments as well as my own. That means that everyday we are at one doctor or another. All this and feeling poorly too.

I had wanted to participate in Wordless Wednesday this week, but alas, I don't think I will get a post up before the test tomorrow. If I feel well enough after I may try, otherwise, it will have to wait until next week. I miss all my Wordless Wednesday blogging buddies! It is fun to do something different and not focus on the health stuff.

Fibromyalgia and Pain - Survey for the American Pain Foundation

Dear APF Member,

The American Pain Foundation and the National Fibromyalgia Association are committed to reaching out to individuals who live with pain. We are well aware of barriers to effective pain care that can be attributed to insurance company policies, no matter what the pain problem. APF and NFA have been provided a special opportunity to work on this issue and are first focusing on the pain care issues of those with fibromyalgia. In particular, we would like to know how delays or denials in insurance coverage impacts access to care.

In December 2008, APF surveyed its members in Maryland, Delaware, District of Columbia, Pennsylvania, Virginia and West Virginia as Phase 1 of the pilot project. As result of an overwhelming response to the survey, we are expanding the next phase of the project to a national audience. If you completed the first survey, we thank you and invite you to take part again to answer additional questions. If you did not have the opportunity to participate in the earlier survey, please take part now. Please feel free to forward this email to anyone you know with fibromyalgia.

APF and NFA invite you to share your insight on this topic by completing our online survey. This survey will be summarized and shared with you at a later date. Won’t you take just a few moments of your time and let us know more about your struggles with access to pain care? What we learn from you can help us continue this work for others who live with different pain problems.

Please complete our Insurance Barriers to Fibromyalgia National Survey now!

We wish you hope and happiness in 2009.

Sincerely,
The American Pain Foundation and the National Fibromyalgia Association


The above is the e-mail I received, and I am asking all of you with Fibromyalgia to take the survey, and to pass it on to others who have this illness or are affected by it. This organization has the ability to make our voices heard and affect change. Thank you for your participation and help.

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.

Without Answers

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

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

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

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.