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.

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? 

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?