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!

Rough Times Ahead

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

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

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

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

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

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

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

Project Runway

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

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

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

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.