yes Aimee went to rehab today and she will be there for 6-8 months. I hope she continues to be optimistic and her support system stays in place. maybe that is what really makes the difference.
looking back it occurs to me that my blog has many entries focused on others without much tie in to myself. with some reflection, really not that much:), it is clear how that has happened. my life has been about others. as a nurse, there is the patient. as a therapist there is the patient and even as a professor/teacher it is about the students. most of us have others in our life that we give our love and support to. mom’s and dad’s have children, spouse’s have likewise, children have parents that may need their care. parenting never ends if you are lucky and then there are the grandchildren.
there has been little time to think about my own situation. situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.” it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point. although when i read of others and their struggles it reinforces my belief that we all have a story. as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.
recently though I have had things on my mind to write about, however, two things stopped me. one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer. it’s ok. to know what our gift is, is a blessing. when reading other blogs i am in awe of the creativity and flow of the story. the new goal for me is to remember and follow my true purpose in writing at all. as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog. future posts may be boring to some who now read my postings. there are so many more interesting people out there. those that become bored please do not feel the need to comment on said boredom.
at times I have wondered if I was being a bit too optimistic and not realistic enough. today I am here to say I have no doubt being optimistic pays off in ways we can not begin to understand.
in november of 2010 my cardiologist told me not to leave town. it is my favorite time of year and we always go to Charleston to see our family and heather comes over too so we get the whole gang. there was no way I was going to miss seeing them and so we went. Chris and I knew the chance we were taking but decided to take that chance. he was willing to not go if I didn’t think we should but he knows me well enough to be packing. obviously I made it without being hospitalized and saw the cardiologist afterward and he was surprised I had not become worse.
today I went to see my primary care dr. he is just one of the good ones. as a man and a physician he is making a difference in lives. so today I say to him I want to go off a medication that has side effects that mimic those of the heart failure. in november my cardiologist said it was too risky. dr. s agreed with me that it was the only way to know for sure and we can increase other meds to cover for this one drug. the drug is one of choice for my condition so I understand any reluctance to tamper with it. however, I am thinking I don’t know if I am worse because of this drug so it makes sense to go off and see.
I am so sure this is going to be the case here that I immediately called Kristen and Heather to tell them the news. they think a lot like me and were so happy for me. if this works, and I believe it will, then I may have up to 2 more yrs to live! so for some of you that doesn’t sound like good news but if you thought the worst was coming any day now, 2 yrs would look very good to you. and who knows what will happen in those 2 yrs. Chris and I were talking about this, we have been told many times over the past 2 yrs that time was running out and if we had believed that each time? we have chosen to believe things will be okay whatever happens and when.
I was able to see the note the cardiologist wrote in december after I came back from Charleston. it said there was no medical explanation for my condition stabilizing. my primary care dr. disagreed. he said to me he believed it was my attitude that kept me going when others have not. I believe the love I have in my life and for my life has been a major factor. so I have a couple more calls to make to loved ones who believe in the power of love and positive thinking.
friday I went to the dr. for my regular check-in and as I am ready to leave the dr. says “let’s see you back in about 4 weeks” okay? somehow I feel like I have failed some pop quiz and am disappointed to be back to 4 weeks instead of 6. although a few months ago it was down to every 2 weeks, when I got back to the 6 weeks it felt like a victory. part of me wanted to say no it is not okay for me to go backward or if I had known there was going to be a quiz I could have done better. that would not be the truth though. this is progress, as it is supposed to be.
luckily my dr. is a great guy and we have some very interesting conversations. we both know he is scheduled for 15 minute intervals so once we get through the nothing is better stage we move on to medical and/or ethical hot topics. he has respect for my medical background and treats me as a professional who just happens to be his patient. he went to seminary school and sometimes struggles with conflicting issues. he is kind and considerate and I am lucky that he is my last dr. they have not all been so great over the years and I have not always allowed myself to expect better. at this age and stage if I am not happy with my treatment or my husbands I am vocal about it. we are consumers and they are dependent on us for their success. over the years though I have participated in the ideal that “they” have the right to treat their pts. however and we are lucky to be in their presence.
I have had 3 cardiologists and the one I use now is the best choice for me. when he came in the room, all 6’9″ of him, he could have been a bit intimidating but he was kind and warm. he sat on a stool talking to me, when we were done he apologized for taking so much of my time and said know that he knew me it would be easier. I just felt like I could take a breath and trust him.
I was so angry when my husband’s cardiologist did not insist he go in the hospital at their last appt. (Chris was in a-fib) that I had to make Chris understand what the dr. had failed to, or had not even tried to. I am so proud to say that when Chris went in for his appt. (after an overnight in the hosp) he was very direct with the dr. and told him that next time he would expect the dr. to be very clear about what he needed to do.
so the good news is I will have a great conversation with a dr I respect and know he cares about me as a human being, so I guess there is no bad news:) well that is always good to hear!