Finding Quality Care while having an illness

This week I had a neurologist appointment.  Surprise, surprise.  I feel like I’m always there.  I have been going to the same place for over a decade and just love them.  They have saved me during holidays, major events and supported me through a tough and arduous journey with my migraines.  As I sat and had a nice chat with my nurse, I told her how much I am learning from blogging and being part of a community that is similar to me in ways that others do not relate.  She was so happy to hear about the involvement I have and said that she enjoys working with patients like me who take responsibility for their own health.  While I am finding what works for me or ideas I think may help, I can report it to her and she can more effectively treat me.  As I was driving home I thought about how many times I prayed that the medication I was trying was going to miraculously cure me.  About how many medications I have read the side effects yet never connected the dots that so many meds were making me sicker.  How many times I received advice that I just didn’t follow through with.   It made me so happy that I am facing my disease head on with knowledge, endless experience, and now a lot more clarity.  I don’t rely just on pills to help me.  Although, I solely rely on them as rescue meds and am pretty positive I will always need them.  I respect them more for the harm and help that they can provide my brain and I take them thoughtfully.  I live a more preventative life naturally and am cautious with triggers that have burned me many times in the past.  I had a horrible experience with my first neurologist in which I was prescribed a medication that did a ton of harm to my body and psychologically made me mistrust the medical community.  Once I found the right doctor for me, my life changed!  Did my migraines go away, of course not.  Have I, in the last 30 years, had an extent of pain free days, nope!  But the compassion and determination to help me and not give up on my condition is what makes me smile when I leave my neurologist’s office.  I have talked to many people who rely on the ER to rescue them from unending pain.  I have never needed to go to the emergency room for my migraines because my neurologist and nurse have provided me with what I need and if not, make me a priority to see me and help.  I don’t believe the ER is always knowledgeable enough to treat the complexity of Migraine and would be fearful to go.  I was admitted when I was pregnant for the flu and severe dehydration.  While knowing that I was highly sensitive and allergic to medications, the ER gave me a dose of medication that I had a reaction to which put both myself and my baby at risk.  The lack of concern that the nurse showed towards me was heartbreaking to say the least.  Receiving quality medical care from my office knowing that they understand migraines and my medical history is relief that I can’t put into words.  Doctors and nurses are people that we all respect and expect to do miracles when in fact they are human like we are. Patients should not be seeing ER or general practioners if they are not trained to treat the wide range of migraine patients.  I think the words “migraine” and “headache” are seen as general statements about health when in fact they are very specific disorders.  I believe too many that suffer are seeing the wrong professionals or the wrong professionals are treating complex patients.  Finding the right care for yourself is crucial.  I am not sure where I would be today if I had not found the doctor’s office that is fit for me.  With that said, I’d like to add that nurses should be way more respected, as should teachers, for doing some of the toughest jobs yet getting little credit for the lives they change.  My nurse that I work with allows me to think that I am not alone and that I am not crazy with my battle.  The mental part of being in extended amounts of pain is eased as she gives me ways to treat the physical pain.  Doctor’s offices should bring hope.  Hope of not a miracle pill that will cure all, but hope of understanding, compassion and never ending quality care.

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