Sunday, October 9, 2011

Serenity Or Bust

I believe I am supposed to have patience with my chronic illness, but lately my patience is wearing thin. I am overly tired. I am in pain from this last episode of arthritis that has hit my hands and has made typing and working quite painful. I am working really hard to do what my doctor has told me to do and that is to rest, get massages, go to my chiropractor for adjustments, go to occupational therapy to get help with making fingers less painful and more limber so I can use them to type. It only works for a short time.

I am also on a new drug, called Methotrexate, which is actually a chemotherapy drug. While this drug gives many people relief after a number of weeks from their symptoms, I have had a bad reaction to it.  It has given me severe headaches, chills, fever and made me so tired I have been in bed for days after taking the drug.

At times like this I say the serenity prayer over and over again. If you don’t know it, it goes like this. “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  Sometimes I have to say this little prayer over and over again.  I even have to take it apart. 

So in case you are having some bad times like I am, let me tell you how I do this. The first line is “God grant me the serenity to accept the things I cannot change.” I cannot change the fact that I have a chronic illness that is not getting better.  I cannot change the weather, or my reactions to the drugs I take. I cannot change other people and the way they act.  This is a biggie for me.  I often don’t like the way other people behave. Some of them are angry people who yell or have bad attitudes.  I cannot change them or their behaviors. 

What I can do is in the next sentence of the prayer. It is, “the courage to change the things I can.”  If people around me behave badly, I can decide not to be around them.  They are bad for me right now. Actually angry people are bad for me anytime, but for right now when my immune system is down and I need more rest, I need to take care of myself and that includes protecting myself from people who are not good for me.  So I change my situation by not being around them.  I change other things in my life that I have control over. I eat foods that are good for me such as fruits and veggies.  I drink water. I get sleep. If I am tired I get rest.  I do the things that I have control over and change them.

The last sentence of the prayer is, “and wisdom to know the difference.”  Sometimes this is difficult for me. I have to think about it. Do I have control over what is causing me trouble? If it is another person, then the answer is no.  I can’t change them.  All I have any control over is how to protect myself at a time when I need to take care of myself and make sure that I have the stamina for the things that are important to me such as seeing my granddaughter Emma who will be 1 on October 23rd.  Having my list of what really is important to me is great at a time when I need to prioritize.

Sunday, September 25, 2011

Patience…I Don’t Have Any Yet

According to Ralph Waldo Emerson” the philosophy of waiting is sustained by all the oracles of the universe". Waiting is a problem for me and while I'm dealing with a chronic illness  I'm learning that it's even more of a problem because I am not exactly patient.  I've said before I'm dealing with a really bad episode of arthritis that has affected my hands and my neck. Since my job involves writing/typing and the use of my hands this is a really big problem for me. Today is the first time I'm actually using a program to speak to my computer. It's weird having to train my brain to talk rather than type. But I'm grateful that I have this option to be able to continue my work. I'm also grateful that I have people at work who have been very supportive and to have helped me obtain the programs and equipment that I needed to do my job, work with students, write books and to continue to write blogs. Still getting used to a new medicine as well that I need in order to feel better is not easy at the same time. In fact, the medicine is making me feel worse. I'm tired, I have chills, and I have fevers. Today I read the little insert that comes with the medicine and guess what?????  Those are all side effects of the drugs.   This leads me back to needing to be patient. Patience is not one of my best qualities. So I start reading my daily reflections on patience. And it tells me "I need only to look and see that things happen in their own time. The resolution of each problem has its own timetable. No amount of wishing, wringing of hands or raging will affect that change. Acceptance is the simple act of going through what is presently facing me, be it pain, anger, despair, hopelessness or their opposites. When life as it really is becomes a fact that I accept as naturally as I breathe, events lose their power to throw me off balance or disturb the basic rhythm of my life." Maybe today I can practice what I just read.

Sunday, September 18, 2011

My Trip to the ER

Last night I ended up in the emergency room.  As with many of us in the bleeding disorder community, it is always an experience. Last night was no exception.  To begin, I had a “girl’s day out” with Emma, my 10 month old granddaughter.  I picked her up at her house and her daddy, my son Eric, had put her in the car seat which is in my back seat.  I had parked close to the curb and was stepping down to lean in to kiss Emma good morning and stepped just the wrong way and felt something in my back zing so hard it took my breath away and I saw stars for a few seconds. Not wanting to ruin my day with Emma, I ignored what happened and we went about our day.  It was great.  But I felt my back the entire time.  After taking her back home to Eric, I went home to take a nap.  I am learning there is a reason we have children why we are young!!!!  But when I woke up, I couldn’t move.  I hurt so badly. Then because of the weather change I developed a cough and it hurt my back even more, so I decided to drive myself to the ER. That’s when things became even worse.  I saw a Nurse Practitioner, who teaches nurses as well as works in the ER.  First off, she got mad at me because as she walked in my phone rang.  I answered because I knew it was my ride and I needed to tell him to park.   I knew this was rude behavior and I did apologize and still do, but all I can say was that I hurt, I had just received a shot of valium in my butt and I wasn’t making great decisions. So she got mad and walked off.  When she finally came back into the room I told her I was sorry, she told me how rude I was, I continued to tell her how sorry I was and finally got sick of it and told her I was still her patient and her job was to treat me not give me a lesson in values.  OK, that was done.  I had already told her I had gone through all the NSAIDS that were available to me and there were no more, but she kept saying, she wished she could give me some.  I said, I also wished I could take them. OK, now guess what she told me to take? You got it. Aspirin!!!! And since aspirin increase bleeding, those with bleeding problems don’t need any extra help, we bleed just fine.  It’s getting us to stop that is the issue.  So now I am telling a medical professional why I can’t take aspirin because I have a bleeding disorder. Then she asks about my factor and if I have a port. I told her no, I infuse myself and she seems shocked that a patient would ever do something like this without the help of medical professionals.  Thank goodness, many of us have been trained to be independent and not depend on the medical community or we would really be in trouble.  Then she asks me “when did I get my bleeding disorder?”  By that time I realize it is time to get my prescription and get out of there.  Ladies from the bleeding disorder community, we still have lots of work to do.  I can’t believe that in 2011, this is still going on.  I think it is time to do more research.  Any volunteers to take part? 

Wednesday, September 14, 2011

Learning Gratitude as Part of Wellness

Gratitude is a feeling or an emotion.  It is thankfulness and a benefit that one has or will have received.  According to my friend and journalist Rita Watson gratitude is an attitude that can lead people to be happier because they have more social connections and therefore less depression which can also lead to fewer illnesses and even a decrease in alcoholism. On my little journey into wellness, which is time consuming and difficult since I am not used to it, I have been reading about gratitude.  I read something in a meditation book the other day that I would like to share.  It states  “the habit of complaining, of wishing things were different, is nothing more than a way of insuring depression and misery  As I expose this and other destructive habits, asking God to remove then, I can allow myself to be happy. I am coming to realize that it is not life that owes me something; it is I that owes something to life.” This one little passage made me sit back and think about all I have to be grateful for in my life, rather than the fact that my fingers hurt when I type, I have this chronic disease that is not going my way and isn’t going to get better anytime soon and my son and daughter in law are moving this weekend with my granddaughter to another state.  So I started making a list of all I have and the list was so much longer than what I am going to call my “pity pot list.”  I have a great family.  I have two amazing adult sons who have made me so proud of what they have become.  I have a wonderful career that just gets better all the time.  I have everything material that I need. My 53 pound boxer that I decided to foster can now be adopted because she didn’t eat or chew on my 7 pound Chihuahua. In fact, last night I couldn’t find my Chihuahua who is normally under that covers with me so I woke up and was looking for her and I found her under a top cover cuddled up with the boxer. Now that is gratitude.   

Tuesday, September 13, 2011

Into The Present Part 1

I started telling you about my past. I can continue with that, which I will in future blogs, but now I want to talk about the present. There are some things going on that I want to share and I hope some of you can relate to. Plus I am up. It is 4 in morning. I have been up since 2 and my alarm goes off at 5:30.  So I might as well do something constructive.  Anyway, I have had arthritis and fibromyalgia for years. However, I kept it pretty much under control by working out and controlling stress.   This summer I had minor surgery, which went fine because I used my factor, but then I had other complications such as my oxygen dropping, a doctor overmedicating me, I couldn’t work out because it was my Achilles tendon that I had surgery on.  So all of a sudden, I had a terrible onset of arthritis and fibro. My fingers and neck swelled to the point that my hands were numb and my rings had to be cut off.  Since what I do for a living as a professor is to teach and write (type), not being able to use my hands is a big deal. My rheumatologist, Dr. Valente is great.  He doesn’t believe in pain killers to treat chronic disease. He believes in life style change.  At first I didn’t take that well. I thought it sounded like a death sentence and I whined and moaned, but then what I realized what he was giving me was a prescription for living my life with my disease, rather than letting the disease control my life.   So I am on prednisone, which as some of you know is not fun.  But it is supposed to take down some of the inflammation. Then I have to go to the chiropractor, massage therapist, get a speech recognition program to learn to talk to my computer, go to occupational therapy and physical therapy, learn to mediate, and the list goes on.  While I can’t seem to sleep through the night and watching my Chihuahua Sasha and Boxer Joey lay beside me sleeping peacefully, I just get jealous of them. In the next blog, I will tell you how I am doing on my wellness journey. It is quite the journey for someone who taking care of themselves and putting health first has never been the first thing on her mind.

Monday, September 12, 2011

A Very Bad Bleed

Getting diagnosed is difficult for women.  At least it was for me.  After bleeding for so many years and so many D and C’s to stop the bleeding (which we now know will not).  Actually how can scraping my uterus stop me from bleeding?  What’s up with that?  I went in as an outpatient one day to have both another D and C and a laparoscope to see why I was bleeding.  That night every time I stood up, I passed out and fell flat on my face.  In the middle of the night my husband at the time took me to the hospital and after a “complete” exam I was given pain killers and told to go home.  I wasn’t OK.  By the next morning, my husband insisted my doctor see me because my stomach was huge and hard and I was still passing out.  He met us; my stomach was filled with blood because I had been hemorrhaging all night and I was given blood into both arms and rushed into surgery where they took out my uterus and ovaries.  You might not be surprised to find out that after surgery I hemorrhaged from the surgical scar all the way to my chest around to the back of me.  Was a hematologist called in?  No.  Of course not. I am a woman.  He didn’t get called in for another three weeks.  Are any of you ladies surprised?  What are your experiences? 

Sunday, September 11, 2011

Let Me Introduce Myself

Hi Everyone, Thanks for letting me blog about women with bleeding disorders. I spent my entire life bleeding. When my teeth were pulled out, I was taken back to the dentist numerous times to have them packed. When my tonsils came out, the same thing happened only I remember the doctor stuck a hard pack into my throat to get it to try to clot, and then pulled the gauze out. It was horrible. And guess what? It didn't hold. I still bled, then my periods. They went on and on. I lost track of the number of D and C's I had. My uterus was taken at 28 because I was bleeding so much. The doctor should have called in a hematologist, but instead just did surgery on me. Oh well. I wasn't the first. At the same time I received my Ph.D. in Sociology in 1996, I began looking for research on women with bleeding disorders and found there was hardly anything. Did we not exist? Or were doctors not interested in women? I was interested in the quality of life of women with bleeding disorders. What will be coming after this post is some of my findings and I will continue to blog. Feel free to ask me for specific things you want me to talk about as well. More to come. Diane