Doctor – Patient Relationship

drpatient

 

I was brought up to respect my elders and to listen to what they told me.  I always looked at doctors with awe and listened intently to anything they would tell me and to always follow their directions.  But lately, I am realizing that they too are just people, doing a job. Unfortunately, they are not fully invested in helping me get well.  I am just another appointment on their calendar to get through.  Heck, they don’t even show up on time for 90% of the appointments.

As I sat waiting in a doctor’s office yesterday afternoon, I had plenty of time to think.  The appointment was at 1:15 and I was seen by the doctor at 3:45.  The doctor is a genuinely nice man, highly respected in his field and his staff is exceedingly friendly (which is a big plus), but I still had to wait over 2 hours.

I will continue to see this doctor, as I value his advice and he is very respectful and courteous and doesn’t rush you during the exam (which is why you have to wait so long), but their are other doctors that I am currently seeing that I am seriously considering severing the relationship with.

I recently read an article about the relationship with your doctor and it stated “With a good doctor, you always leave the office feeling that they care about you.”  I can’t say that is true in most of my experiences.  I guess I’m not alone in feeling like this because the article also states that 2/3 of patients worldwide say that they are dissatisfied with their doctors, but many stick with them anyway because they assume all doctors will treat them the same way.  The other major reason we stick with a doctor is because we are worried about offending them or we are just so overwhelmed by the idea of finding someone new and starting all over again.

I am guilty of these 3 reasons of sticking with doctors, long after I know I should move on.  Recently, I had a test done at a lab and sent copies of the results to 2 different doctors (Dr. E and Dr. G).

Dr E. called me back within a week to discuss my results and a plan of action to help me improve the situation.  It involves starting a new medicine, with major possible side effects.  Dr. E spent a substantial amount of time on the phone with me answering my questions and then gave me her email address and said if I have any side effects or any additional concerns, just drop her an email.  I have always loved this doctor and her handling of my current situation is just another reason why I am glad I did change doctors, because the previous specialist I was seeing was so rude and dismissive to me, that I left the office in tears (that’s the first and last time I hope that happens).  But even after I left the office in tears, I told myself that maybe she’s having a bad day and I should give her another chance.  I did use her one more time and while she wasn’t as rude, I just didn’t like the experience in her office, even with her help.  They weren’t understanding of my needs and I promised myself I would look for another doctor.

Getting back to my current results, Dr. G’s office called me back two weeks after the test was done and the assistant requested that I make an appointment to see the doctor to discuss the results.  I explained my situation and asked if the doctor could get on the phone for 5 minutes and I could discuss the treatment plan my other doctor suggested.  The following day the assistant called me back and said I have to come in to see the doctor and that she wouldn’t be giving me advice over the phone.

Now which doctor do you think I’m going to continue to see?  In this situation, it’s really cut and dry, but many situations aren’t as clear. The article stated there are 5 common signs that suggest you need to change your doctor.  They are:

  1. The doctor. doesn’t tailor recommendations to your life
  2. The doctor is always running late
  3. The doctor rushes you
  4. The office is disorganized
  5. The doctor is arrogant

So from now on, I will periodically reevaluate my satisfaction with the doctors I see (and unfortunately there are many).  If I don’t feel as if I’m working as a team with my doctor and that we are not partners in this important relationship, I will look for another doctor.

It’s easier to find a doctor these days, then it is a potential mate, so why suffer with either relationship when you know in your heart it’s time to move on.

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Writing 101: Serially Lost

losttime

Losing someone special or something that you care a great deal about is very painful, yet it’s something that everyone has to deal with and process in their own way and in their own time.  I lost 2 very special people, within a few months of each other and I’ve been thinking all day about which one I should write about and how to approach this post.  But as I sat down to write, I realized the greatest loss I have had in my life is losing the last 5 years to an illness.

When you lose a person, there’s a grieving process and the pain and sadness ease up after a period of time, but what happens when you lose your life to an illness and I don’t mean death, I mean having to figure out a way to live a purposeful and happy life, while you lost your previous life.  Grief associated with an ongoing illness isn’t as finite as losing a loved one.  The event happens and doesn’t go away.  How can time heal all wounds when your life is a daily permanent reminder of that loss and it is never ending.

Five years ago, I was in a great place, living a great life, not perfect but great.  I had entered a new relationship which was very special to me, I had a terrific job, where I was fairly compensated and I had freedom and unlimited choices.  I was happy and optimistic about my future.

It was a very cold February night as I went to sleep, thinking about the fun I was going to have at tomorrow’s Super Bowl Party and hoping that the numbers I picked in the office pool were going to net me the big win of the night.   I fell asleep quickly that Saturday night and when I awoke on Sunday morning, nothing was the same.

I couldn’t move, couldn’t get my legs to support my weight and I just lie there wondering what was going on.  After a while, my legs stopped shaking and I was able to make my way to the kitchen and brew a pot of coffee, thinking that would help me get on with my day.

Unfortunately, 2 cups of coffee later, I was in no better shape and had to go back to bed, where I spent the better part of the following week.  Everyone kept telling me I must have picked up a nasty virus and that I’d be back to normal in no time, but I knew something was very wrong and that a week in bed was not going to cure this ailment.

When you have a chronic condition, you are forever walking down a imaginary line that separates the past from the future. I think back to what I used to be able to do and think about the things I’ve had to give up and the time that I lost.  When I look forward, I can’t really picture what my future will bring, as I’m entering unchartered territory.

 

 

 

Writing 101: A Room with a View (or Just a View)

http://www.nyhabitat.com (photo NY-14516D71)

 

I live in New York State, currently in one of the 5 boroughs, less than 10 miles from Manhattan.  Until I became ill and had to move out of Manhattan, I lived in NYC for 20 years, in the same apartment building.

Manhattan was great when you are able to walk around, take public transportation and have enough money to order in meals. But once I became confined to my apartment because of my illness, Manhattan became a horrible place to live.

Parking was a nightmare and none of my friends or family  could come visit me during the day, even on weekends it was difficult. I was a prisoner in my apartment, when I lived in the busiest city in the country, the city that never sleeps.  I sat in my apartment day after day,  looking out my window, seeing the world pass me by, as I tried to figure out what my illness was.

If I had to leave the apartment, I would count the steps required to walk up the block to the bus stop and then would picture in my mind how many steps were required to get to the doctors office that I needed to get to on that particular day.  My social life consisted of doctor visits and occasional phone calls when I had the energy.

My living room became my solace and I can still picture every last inch of it.  It’s etched in my mind and I loved being in that room.  I had lived in my apartment prior to my marriage and then remained there after my divorce.  Once my divorce was finalized, I redecorated the place so that I would have a fresh start.  I love to decorate and to pick out colors.  I don’t look at this process as work, or as a chore, like so many people do.  I was enjoying this process and everything I choice, I loved.

So if I could be transported back to one place, I would love to be able to go back to my old apartment in NYC and be healthy and once again enjoy what Manhattan has to offer.  I would visit the WTC Museum and have lunch at my favorite neighborhood place, which served the best grilled chicken salad, with hearts of palm and roasted artichokes.  Then I would walk cross town and go see the Broadway play Aladdin.

I probably wouldn’t have wanted to live in Manhattan forever, but I would have wanted to leave on my own terms and not be forced to leave because I became ill, went on disability and got fired from a company where I worked for 15 years at a job I absolutely loved.

To Stress or Not to Stress

stress

Living with a chronic illness is difficult enough, but your body isn’t immune to getting other conditions.  Wouldn’t it be great if once we had one illness, then we didn’t have to deal with any other one.  Unfortunately things don’t work that way.

I’m not an alarmist, never have been but dealing with an illness that has constant changing symptoms makes you very in tune with your body.  At least it does me.  I have always been very intuitive and very good at reading other peoples body language and mood changes, so it’s only natural that I am also very in sync with my own.

I don’t go running to the doctor at the first sign of new symptoms but I watch them and see if they progress, change or go away.  A few weeks ago I decided it was time to go check out some symptoms that were getting worse and that had to do with my heart and breathing.

I have always had low blood pressure, but about 3 years ago (2 years into this illness) my pressure changed and while it changed to what the doctors considered “normal” it wasn’t my normal.  At the exact same time, I also started getting very strong palputations and heart flutters.  After about 6 weeks of these heart movements, I decided to find a cardiologist and have them checked out.

I had a slightly irregular EKG, but nothing that alarmed a doctor.  I also wore a halter monitor for a week and while they did see some weird activity, it wasn’t anything that warranted any medications or further tests.  I was told to deal with the palputations and come back in a year, unless my symptoms changed.  A year later the palputations were still present so I went back and this time had a sonogram, which showed some funky things going on with my left ventricle, but again was sent home to watch for changing symptoms and a yearly follow up.

Which bring us to this past month.  During the last 6 weeks, I have noticed a slight difficulty in breathing and an ache over my heart.  These 2 new symptoms caused me some concern and I decided since it was time to go back for a check up, I better do it sooner than later.  This time the doctor order a “Nuclear Cardiolite Stress Test”.

Panic set in.  I can’t walk on a treadmill, I can’t sit up in a doctor’s office for 6 hours, I can’t go without caffeine for 24 hours or without eating for 12 hours.  I”m weak to start, how can I even think about taking the test.  I made the appointment because that was what the doctor asked me to do, but in the back of my mind I knew I was going to cancel.

For the next 2 days, I was agitated and couldn’t sleep.  I really didn’t know what to do and went back and forth in my mind.  I asked the 2 closest people to me (who understood my condition) what do they think and both said that I shouldn’t do it.  But on the 3rd day, I decided I had to because the alternative was worse, “what if I really had heart problems and then had a heart attack?”

This was the first time since I’ve been ill, that I really had been faced with a medical decision about taking a complicated test.  I really had never thought about dealing with a second condition or going through a procedure that would tax my already weak and fatigued body.  It’s a scary thought that something else could be wrong and that dealing with my current illness would not be my first priority because what I am living with is a life long condition.

I hope to feel stronger and have less symptoms, but will I ever be totally free of this condition, probably not.  Do I hope to have less severe symptoms and be able to lead a normal life, yes I do.  So for now, I am happy to say that I survived the Stress Test.  It was difficult, very difficult, but the results did ease my mind.  But now, once again, I have unanswered questions and have been referred to a pulmonologist.

Why can’t anything be easy and have a solution?  I have decided to wait another while before dealing with more tests.  I’d like to try and enjoy the summer a little bit and not be sitting in doctor’s offices agonizing about lung scans and xrays and blood tests.  Just as these symptoms appeared, I am hoping they will disappear.

This experience did teach me that on day’s I think I can’t handle one more thing, I can.  Or on day’s when I am down on myself and fall in that deep hole of despair, to remind myself that things are really not the worst they could be and that I have to appreciate the current life I am trying to live.

Happy Holidays!!

holiday

 

This past week was a holy week for both the Christians and Jewish people.  While both holidays are connected, as the Last Supper is said to have taken place at Passover, the holidays are fundamentally different.

Someone once explained to me their belief is that  Easter seems to be a celebration through suffering whereas Passover is a celebration despite suffering.

Suffering is something people with chronic conditions know a lot about.  So while we all are celebrating the holidays this week, let’s hope that as our ancestors before us triumphed over suffering, we too will be able to move forward despite our limitations.

Happy holidays to all!!

 

Gone Fishing

gone fishing

 

I’ve been on a self imposed vacation brought on by Mother Nature’s ways and have been inside for the past 7 days.  I wasn’t at home and was staying with a relative and decided to check out from my everyday routine and pretend I was away for the week.

I gave myself a mental holiday, even though physically I wasn’t able to do much.  I must admit it was great to be out of my home for a week and to change my routine ever so slightly.  I had company 24/7, had someone to eat meals with and someone to hear whatever thought popped into my head when it did.  I had forgotten how nice it was to live with someone and have someone in the home with you.

I have lived by myself since 2006 when I got divorced.  I kind of felt like I was living alone for some of my marriage too, so really I have lived alone for a long time.  I had told myself that it was best that I did live alone because who would put up with my crazy and stringent rules for myself.  Resting after cleaning, resting after showering, resting, resting throughout the day.  There are so many times during the day I just need absolute quiet and can’t think of interacting with anyone.  I couldn’t imagine being around someone for so much time.

This week showed me that if I had the “right” someone perhaps I would be able to live with someone again.  It’s different when you are already in a committed relationship and become ill.  Your life partner should be there “in sickness and in health” and while a chronic illness does put a huge strain on the relationship, a truly compassionate and understanding partner will stick by you.

It’s a whole other story, when you meet someone when you are already ill.  They really don’t owe you the love and support you get from a partner in an established relationship.  I think it takes a very, very special person to fall in love and move forward in a relationship with someone who has a chronic, life long, debilitating illness.

I’m not saying these people don’t exist, but considering the dating scene for a healthy active individual and how hard it is to find someone late in life that you are compatible with,  it’s nothing short of a miracle to find someone when you are dealing with an illness.

Stranded Again

snowstorm

Funny, wish that person was me and I was able to walk around and shovel.  Never thought I’d say that, but unfortunately I am once again stuck inside waiting out a terrible snow storm that is hitting our area.  These feelings of helplessness come across in waves and I always tell myself, next time I will think differently and I am trying to not obsess about all the things I can’t do.

I live on the East Coast in the United States and we are having a winter with record low temperatures and lots of snow.  I live by myself and my mom, who is recently widowed, lives about 2 blocks from me.  When I became ill, I was living in NYC and loved living there, but when you are ill and on disability, NYC is a very lonely and extremely expensive place to live.  People can’t visit because there is no where to park during the day, the traffic scares people away and being without a car, I either had to walk or take public transportation, which isn’t suitable for my current lifestyle.

So I decided to move to an outer borough and be close to my family.  For the first time in my life (as I had lived in NYC since 1993) I am dealing with shoveling snow, clearing off cars and maneuvering on snowy unplowed streets.  Once again, in anticipation of a big storm, with upwards of 14 inches of snow, I am staying with my mom.  This allows me to make sure she is alright during the storm, we have company for the duration and our car can be safely parked in a covered garage, which eliminates the need for me to shovel or clear the car.

So while many of the essentials have been taken care of, I still have thoughts of helplessness.  The “what if scenarios aren’t always that beneficial when you have an overactive mind.  I have been listening to Louis Hay’s audio about how to love yourself  and one of the things she states is that We Need to LOVE OURSELVES enough to stop SCARING OURSELVES.  She also emphasizes how we need to stop terrorizing ourselves with bad thoughts.

When I listen to her audio, it all sounds so easy.  Just stop your thoughts and wham your life will be different. Be kind to your mind.  Everything she says is so true and really easy to comprehend but not all that easy to implement.

It appears that I will be stuck in for a while and hopefully I will emerge a stronger person and listen to the words of Ms. Hay,s as she has a loyal following and really does speak simple but powerful truths.