One of the nice things about having a blog is that it gives me a place to vent my feelings. I plan to take advantage of that today, so if you aren't in the mood to hear my rant you'll probably want to skip this post.
I had an appointment EARLY this morning with a new specialist who came highly recommended by another specialist whom I respect and like. I have been having a lot of health issues and was really hoping that this doctor would be part of the answers I am seeking. Although exhausted I spent time last night making sure I had all of my information together in an organized fashion so I would be prepared today, because early morning isn't my best time.
I got to the appointment early since I hadn't been sent any paperwork to fill out and I wanted to be ready at the scheduled time. No one was there until after my scheduled appointment. I was finally able to sign in and received the appropriate clipboard full of nonsense we all fill out each time we start with a new doctor. I patiently filled everything out, adding my typed sheets of illnesses and allergy/medications. I even had my insurance card clipped at the top for the clerk. Eventually I was called back into a room where I waited about 20 mins. before a resident entered and proceeded to take a history from me and ask why I was there today. I pointed out my typed sheet of current complaints that brought me in. In fairness, the resident did her best to get a complete history and to try to hone in on the main issue I was there about. She left after about 45 mins. to go copy some records I provided her and to bring the doctor in.
The doctor poked her head in about 5 mins. later, looking for the intern. The doctor was a bit short and rude, but I gave her the benefit of the doubt. When she and the intern finally entered the room, the doctor made it clear that she was not happy that my mother was in the room with me. As a side note, I had asked my mom along for a couple of reasons; I needed the support and help physically getting there, I wanted another set of ears and also someone who could help to back up what I was saying because my mom and I live together so she is quite aware of what is happening with me and finally because my mom is looking for this particular type of specialist herself, and this would give her a chance to see the doctor at work and decide if she might be interested in seeing her.
The doctor was rude and impatient with both myself and the resident. She did an examination of me that literally had me in tears from the pain, and she not only ignored this, but told me calm down so she could hear my breath through the stethoscope! No "I know this may be painful, but I have to do it, sorry" from this one!
She then proceeded to fight with me about my illness, about medication I am on for another condition and to ignore my repeated requests that we deal with a specific issue I had come about that is concerning me.
Finally I had had enough and I got up off the exam table and said, "obviously this isn't going to work out, we clearly aren't going to be able to communicate or work together". I slipped on my shoes and watched as the resident picked her jaw up off the floor. The doctor was happy to see me go, she had made up her mind before walking in the room that I was a "problem" patient and she had no desire to help me.
Although this isn't the first such experience I have ever had, I have to say each time it happens I am truly upset. I feel cheated. I wasted my precious energy on this idiot. Now I am still dealing with the problem that sent me there, but I am also in terrible pain from her "examination" and I am exhausted, emotionally and physically, from the whole ordeal.
This is the type of thing that a healthy person could probably shake off quickly, but because I deal with so many doctors and have such limited energy it becomes upsetting and frustrating for me. I will have to try again with another doctor, but for today I am headed to bed in the hopes I can put the whole horrible incident out of mind and get some rest.
Showing posts with label Doctors. Show all posts
Showing posts with label Doctors. Show all posts
Tuesday, September 22, 2009
Wednesday, May 27, 2009
Hanging in There
Well tomorrow is the next follow up with the pain management doctor in an attempt to get my life back on track. In the meantime all sorts of other illnesses have been exacerbated by this wonderful pain flare. My immune system is simply not working, so that is wrecking havoc all over my body. Add the extremely high pollen count we have had and a whopper of a sinus infection to systemic thrush and you can imagine what a lovely time I am having.
My mother is suffering with the shingles at the moment, her sixth bout with them! We are both trying to find some kind of "normal" which has escaped us completely for the past few months. I know life with chronic illness is a delicate balancing act, but I had forgotten had terrible it can be when everything goes at once. My house of cards has fallen and I feel lost. I don't usually get down and stay there, but the medications have also played a number on my emotions as well as my body. For instance, I have always been underweight, couldn't really put weight on if I tried. I know that probably elicited moans from many of you who battle their weight constantly. Well, I can honestly say I understand now. I have put on over 30lbs. in three months. I went from a size zero or 2 to an 8! NOTHING, not even my shoes fit anymore! We are still trying to find the cause, which may be the steroids I take for adrenal insufficiency, although I have been on them for almost 2 years so it seems odd they would suddenly pack the pounds on. Compared to most I still pass for a reasonable weight, but I feel awful and look awful to me. When you are used to being thin, it is very strange to suddenly be heavy. I know it isn't the end of the world, but it is one more thing that is out of my control at the moment and unknown.
I am do to start going back to immunologist, and perhaps getting gamma globulin infusions. I have infections that won't go away and fevers all the time, which is odd when you are on steroids, which should lower your fever.
I am sick and tired and broke. I feel like I will scream if I have to see another specialist or get another diagnosis! I'm tired of being moody from medications, lack of sleep, pain and life in general. I feel badly that I am short with my mom so much of the time simply because she is here.
All that said, I have been so touched by the many kind comments I have received from so many of you, it helps so much to know that others out there"get it" and care and send their support and love so freely. When mom and I moved to NY almost 2 years ago, it was so I could finally get help from a pain management doctor. We had tried all over NC and got no where. I am grateful to have found my doctor here, and despite the past few months (which were caused by insurance company greed not doctor error!), I know my life is better. But we still have a house in NC that hasn't sold, and in this economy it could be awhile longer before that happens. The financial strain is tremendous and it isn't just myself I have taken down, but my mom with we. I have a lot of guilt about it.
Please keep praying and sending support. And if you happen to know someone looking for a lovely 3 bedroom house in NC, please put em touch with me!! LOL!!
My mother is suffering with the shingles at the moment, her sixth bout with them! We are both trying to find some kind of "normal" which has escaped us completely for the past few months. I know life with chronic illness is a delicate balancing act, but I had forgotten had terrible it can be when everything goes at once. My house of cards has fallen and I feel lost. I don't usually get down and stay there, but the medications have also played a number on my emotions as well as my body. For instance, I have always been underweight, couldn't really put weight on if I tried. I know that probably elicited moans from many of you who battle their weight constantly. Well, I can honestly say I understand now. I have put on over 30lbs. in three months. I went from a size zero or 2 to an 8! NOTHING, not even my shoes fit anymore! We are still trying to find the cause, which may be the steroids I take for adrenal insufficiency, although I have been on them for almost 2 years so it seems odd they would suddenly pack the pounds on. Compared to most I still pass for a reasonable weight, but I feel awful and look awful to me. When you are used to being thin, it is very strange to suddenly be heavy. I know it isn't the end of the world, but it is one more thing that is out of my control at the moment and unknown.
I am do to start going back to immunologist, and perhaps getting gamma globulin infusions. I have infections that won't go away and fevers all the time, which is odd when you are on steroids, which should lower your fever.
I am sick and tired and broke. I feel like I will scream if I have to see another specialist or get another diagnosis! I'm tired of being moody from medications, lack of sleep, pain and life in general. I feel badly that I am short with my mom so much of the time simply because she is here.
All that said, I have been so touched by the many kind comments I have received from so many of you, it helps so much to know that others out there"get it" and care and send their support and love so freely. When mom and I moved to NY almost 2 years ago, it was so I could finally get help from a pain management doctor. We had tried all over NC and got no where. I am grateful to have found my doctor here, and despite the past few months (which were caused by insurance company greed not doctor error!), I know my life is better. But we still have a house in NC that hasn't sold, and in this economy it could be awhile longer before that happens. The financial strain is tremendous and it isn't just myself I have taken down, but my mom with we. I have a lot of guilt about it.
Please keep praying and sending support. And if you happen to know someone looking for a lovely 3 bedroom house in NC, please put em touch with me!! LOL!!
Wednesday, March 25, 2009
One Step Forward, Two Steps Back
I want to apologize for the long delay since my last post. Regular readers are probably aware not only of my daily health challenges, but also what I have been going through trying to get a surgery scheduled and done. I have been battling an infection that just won't clear, which is common for those of us who deal with multiple health issues, especially autoimmune ones. Right now my immune system just isn't working, and as a result the surgery has been postponed indefinitely. Until the infection clears we cannot take the chance of spreading it systemically during the operation. I understand this, but it doesn't make it easier to deal with.
Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.
So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.
Another thing I have been going through is what my dentist calls "remodeling" of my jaw. I had to laugh when he said that, I mean what person with chronic illness doesn't feel like their whole body has been remodeled (and not to their liking!). Seriously, I had a tooth extracted back in February and have been waiting for the site to heal completely since (see the above paragraph about how we don't heal quickly!). Last week I noticed a very sharp piece of something, which felt suspiciously like bone to my untrained finger, jutting forth from my gum at the site where the tooth had been extracted from. Sure enough, that is exactly what it is. Evidently when we lose a tooth the jaw "remodels" itself to adapt to the loss and shape itself accordingly (aren't our bodies fascinating things?!). Anyway, this piece of bone will eventually make its way out of the gum and out of my mouth. In the meantime all I can do is wait and use warm salt water swishes to help it along.
So my absence from the blogosphere has been due to numerous health complications that have drained me physically, emotionally and creatively. I appreciate your patience with me and will try to get back on track as my health allows.
Tuesday, March 10, 2009
Advocating - Sometimes It Works, and Sometimes It Doesn't
I think for me one of the most frustrating parts of having chronic illness is the constant need to advocate for myself. It is tiring, both emotionally and physically, but I know it is important so I do it to the best of my ability. I encourage others to do it as well, so it is an area where I try to "walk my talk".
I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.
Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.
Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.
The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.
The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.
I was scheduled for surgery on March 18th. Because I have a complicated medical history, I addressed issues with my doctor as soon as we agreed that surgery would be necessary. I take pain medication daily, so that is a big issue that has to taken into account when you are talking about having any sort of procedure. For one thing, my body is used to having that type of medication, so my need for proper dosages of anesthesia and post operative pain care are different than the average patient. Another complication comes in from the area of my adrenal insufficiency. Because my body doesn't make cortisol the way it should, I have to take hydrocortisone daily as a replacement. Any time I am sick or under a lot of stress I have to take additional doses. This is especially true for something like an operation or procedure. It is another item that needs to be dealt with before any surgery, hospitalization or procedure is done.
Knowing all of this, I have been diligent in getting my GYN (who will be performing my surgery) to contact the other specialists who handle these different aspects of my care. It is annoying to always have to be the one who brings these items up, but I have learned from past experience that the only person who suffers if I don't is me, so my advocating for myself is purely self-interest.
Despite the fact that my surgery was scheduled over 3 weeks ago, and that I have tried to make sure that all of these factors were taken into consideration, I learned yesterday that my surgery was being cancelled for the 18th and will have to be re-scheduled. The long and short of it being I need to be the first patient of the day to deal with the pain management control area of my case. One doctor blames another for overlooking this crucial point, but the fact is it doesn't really matter who is at fault because once again the person who is affected the most is ME. I am annoyed because I have spent the past few weeks getting ready both mentally and physically to have this done next week. I have spent time going to appointments that revolved around pre-op stuff, making sure that people would be available to help me out after the surgery since I won't be hospitalized, getting things in order at home and a million other tasks that required my energy and focus, both of which are always in short supply when you are chronically ill. Now I will have to wait for the surgery to be re-scheduled and repeat the whole process all over. Not only it is frustrating, it is upsetting.
The best part is that the doctors and their offices actually have the nerve to act put off by this, as if being chronically ill and needing all these special arrangements are something someone enjoys and likes having to deal with! Again, even with the best advocacy I could provide, the person who ends up paying for the mistakes of others is me, and as if that isn't bad enough I also get treated to a dose of attitude on top of it. I could understand their feelings if I waited until the last minute to provide them with information that caused them to have to re-schedule, but since the errors aren't mine I don't appreciate having to deal with hostility at their own mistakes being directed at me.
The only thing I can say is that in the past, before I learned how things really happened in our health care system, I would have trusted that the doctors would take care of all of this, and instead of facing a postponed surgery, I would be sitting in the surgical area without proper pain management and facing the possibility of adrenal failure or shock from lack of treatment for my condition. So I guess instead of looking at this as the total failure of my advocacy, I should look at it as a small victory - I no longer allow myself to be treated that way. I will have the surgery when the proper procedures have been put into place to make it as safe and effective for me as possible.
Tuesday, January 20, 2009
Having a Tooth Extracted
I am writing early in the day because I have an appointment later to have my tooth pulled. I figure I won't be in much of a blogging mood after that, so do it now. Of course I am looking forward to having this done, well "like getting a tooth pulled" as the old expression goes. I have been having problems with this tooth for over 2 months, but haven't been well enough to get it out. Because I am battling with a sinus and ear infection that doesn't want to clear, the dentist is reluctant to take the tooth. He feels that with an active infection in the area it will make the healing process problematic.
The frustration for me is that once again someone else's miscommunication has become my problem. When I went to the internist to get treated for the infection, he put me on antibiotics and made it clear he wanted the tooth pulled last Friday. This way I would still be on antibiotic, and have had most of the course of treatment. The dentist had told me he would make time for me whenever I needed because he wanted to pull it the minute I was feeling well, before another issue had a chance to crop up. (Let's face it, he knows my health history!) So I called the dentist's office immediately upon leaving the doctor and got someone new. I explained the whole thing to her and she scheduled it for today (4 days AFTER the doctor requested). I asked to change it, explaining again WHY and got nothing but attitude. In fairness to my dentist's staff, that isn't the usual experience with his office.
Last night I received a call confirming my appointment. I explained I needed to speak with the dentist because the infection has not cleared and I didn't know that we should proceed. I spoke with his assistant who was appalled that they hadn't seen me on Saturday. Of course, all of this is water under the bridge now. I was left having to get in touch with the internist's office this morning to get clearance and now am having the tooth pulled at 2pm, despite my own misgivings, because I know I am still sick. Again, the doctors won't have to suffer, I will. And add into this mix that I have medications that are taken at 3 pm with food, which obviously can't happen, so I will have to push them an hour ahead.
I am so sick of dealing with all of this. The trying to juggle too many health issues, medications, doctors and other issues. Add to all of this the snow we got again last night. My mother won't drive in the snow, and I understand her fear. She has been away from it for over 25 years and she feels she isn't competent to do it. I appreciate that she knows what her limits are. However, that means that I will be driving myself, in rush hour traffic, after having a tough extraction. Not exactly my favorite scenario.
Okay, well now that I have cheered everyone up with this positive post, is there anything else I can do to brighten your day?! :-)
Here's hoping things are going better for you and I hope my next post is much more upbeat!
The frustration for me is that once again someone else's miscommunication has become my problem. When I went to the internist to get treated for the infection, he put me on antibiotics and made it clear he wanted the tooth pulled last Friday. This way I would still be on antibiotic, and have had most of the course of treatment. The dentist had told me he would make time for me whenever I needed because he wanted to pull it the minute I was feeling well, before another issue had a chance to crop up. (Let's face it, he knows my health history!) So I called the dentist's office immediately upon leaving the doctor and got someone new. I explained the whole thing to her and she scheduled it for today (4 days AFTER the doctor requested). I asked to change it, explaining again WHY and got nothing but attitude. In fairness to my dentist's staff, that isn't the usual experience with his office.
Last night I received a call confirming my appointment. I explained I needed to speak with the dentist because the infection has not cleared and I didn't know that we should proceed. I spoke with his assistant who was appalled that they hadn't seen me on Saturday. Of course, all of this is water under the bridge now. I was left having to get in touch with the internist's office this morning to get clearance and now am having the tooth pulled at 2pm, despite my own misgivings, because I know I am still sick. Again, the doctors won't have to suffer, I will. And add into this mix that I have medications that are taken at 3 pm with food, which obviously can't happen, so I will have to push them an hour ahead.
I am so sick of dealing with all of this. The trying to juggle too many health issues, medications, doctors and other issues. Add to all of this the snow we got again last night. My mother won't drive in the snow, and I understand her fear. She has been away from it for over 25 years and she feels she isn't competent to do it. I appreciate that she knows what her limits are. However, that means that I will be driving myself, in rush hour traffic, after having a tough extraction. Not exactly my favorite scenario.
Okay, well now that I have cheered everyone up with this positive post, is there anything else I can do to brighten your day?! :-)
Here's hoping things are going better for you and I hope my next post is much more upbeat!
Tuesday, January 13, 2009
Whew, Is It Really only Tuesday?
Hectic week (again) with doctors. Tomorrow I am having a renal scan with Lasix, aren't you all jealous?! LOL!! Hopefully this will provide some answers as to what may be causing the nephritis and whether it is anything to worry about. I have a friend who has had the test, so I have a pretty good idea of what I am in for and I am NOT looking forward to it.
On the brighter side, tomorrow evening I am going to my first book club meeting. My girlfriend has been a member of this book club for years and is bringing me. I even read the whole book, 'The Flamenco Academy' by Sarah Bird, so I should be able to discuss it. I am looking forward to meeting all the other women and having some discussion that doesn't deal with medical tests, doctors or prescriptions!
Tonight we finally got all the Christmas decorations and the tree down and away. The is the latest I have ever had things up. It couldn't be helped, but it was driving me crazy. I am still on antibiotic for the sinus and ear infection. If that clears up, I am due to finally get this tooth pulled next Tues. The pain is incredible and I hope it all happens. I am so sick of doctors, tests and the like. I cancelled an appointment on Monday morning because my vertigo made it impossible for me to drive. The doctor called because he was upset that I had cancelled on short notice. I have cancelled on him before and I guess he thought I just didn't want to see him. I wish these doctors could get a sense of what day to day life is really like for us. I have reached a point where I really try not to schedule more than one doctor a day. I just can't do it anymore, physically or emotionally. And of course, I have my mother living with me as well, so I attend her appointments as well as my own. That means that everyday we are at one doctor or another. All this and feeling poorly too.
I had wanted to participate in Wordless Wednesday this week, but alas, I don't think I will get a post up before the test tomorrow. If I feel well enough after I may try, otherwise, it will have to wait until next week. I miss all my Wordless Wednesday blogging buddies! It is fun to do something different and not focus on the health stuff.
On the brighter side, tomorrow evening I am going to my first book club meeting. My girlfriend has been a member of this book club for years and is bringing me. I even read the whole book, 'The Flamenco Academy' by Sarah Bird, so I should be able to discuss it. I am looking forward to meeting all the other women and having some discussion that doesn't deal with medical tests, doctors or prescriptions!
Tonight we finally got all the Christmas decorations and the tree down and away. The is the latest I have ever had things up. It couldn't be helped, but it was driving me crazy. I am still on antibiotic for the sinus and ear infection. If that clears up, I am due to finally get this tooth pulled next Tues. The pain is incredible and I hope it all happens. I am so sick of doctors, tests and the like. I cancelled an appointment on Monday morning because my vertigo made it impossible for me to drive. The doctor called because he was upset that I had cancelled on short notice. I have cancelled on him before and I guess he thought I just didn't want to see him. I wish these doctors could get a sense of what day to day life is really like for us. I have reached a point where I really try not to schedule more than one doctor a day. I just can't do it anymore, physically or emotionally. And of course, I have my mother living with me as well, so I attend her appointments as well as my own. That means that everyday we are at one doctor or another. All this and feeling poorly too.
I had wanted to participate in Wordless Wednesday this week, but alas, I don't think I will get a post up before the test tomorrow. If I feel well enough after I may try, otherwise, it will have to wait until next week. I miss all my Wordless Wednesday blogging buddies! It is fun to do something different and not focus on the health stuff.
Wednesday, January 7, 2009
Back From Break
WOW, it has been awhile since I last posted. I wish I could say I was away for the holidays, but in truth things haven't been too well with me. I needed to take a break for health and personal reasons.
Those of you with chronic illness will understand. By it's very nature it flares up when it feels like it and there isn't always a lot that can be done other than wait it out. This time it really got to me emotionally. I was in a real blue funk for awhile and just didn't feel like posting when I felt like that. But, talking with a good friend made me realize that I needed to post, because that is the truth of being chronically ill. Not all times are good, we can't always think our way to happier times, and I would be being dishonest not to admit that I go to that place sometimes too. I write a lot about gratitude and self care, and I fully believe in both and practice them regularly, but I am not immune to bad times.
However, I am beginning to feel better, emotionally at least, and wanted to get back into the swing of things. I miss posting on Wordless Wednesday and Photo Hunt Saturdays and plan to get back to those this week or next.
I did have some fun over the holidays including:
I talked in my last post about needing to take a break from doctors appointments. Unfortunately my break is over and I have been going to doctor's each day. I have so many things going on, so many tests happening at once, plus my mother to tend to so the days are full once again with that. I have had two appointments (yesterday and today) with new specialists who listened and are taking seriously some of the things that have been wrong for awhile now. It gives me hope. I am changing from the internist I had been seeing, who I had written I was so unhappy with, back to one I had seen years ago whom I had liked. I am hopeful this will lead to a better handling of my overall health situation.
My girlfriend talked me into signing up for a yoga class at our local recreation center. I have to be very careful because I hyper extend easily and injure myself, but I am going to give it a try. I won't be able to do what everyone else can, but I will do what I can.
I don't believe in New Year's resolutions. I try my best throughout the year to take care of myself and improve in ways I can. Each time I fall down, I pick myself up and try again and that's good enough for me. I find the pressure of resolutions usually makes me fail, but just aiming to improve my health or outlook is more manageable, for me anyway.
I will post some photos of some of the fun stuff in the next day or so. I appreciate everyone who visits and reads my blog and the patience you show when I am away for an extended period of time. I hope that everyone had a good holiday season and that the New Year is starting off on a good note. I know the holidays are always a mixed bag for me. The religious part and the spirit of Christmas that brings out the best in others always makes me happy, but at the same time I also feel a sadness for those who aren't here. Let's just say I am happy to be in January and especially past my birthday.
Speaking of birthdays, I know I will get some heat for this, but I want your comments so I am bringing this on myself. . . when did we stop sending paper cards or calling someone for their birthday and begin thinking it is okay to e-mail or send just an e-card? I was offended at how many people took this way out. If it was a money issue, I would be understanding, but those that did it weren't the ones who are struggling financially. Am I the only one who thinks that a card or call is still in order?
Thanks again for allowing me to be real here, even when the reality isn't pretty. It helps to know that there are others who struggle and get through the bad times too. Blogging and meeting so many great people through it, has been a huge blessing. Well, I have rambled enough for one post - see ya again soon.
Those of you with chronic illness will understand. By it's very nature it flares up when it feels like it and there isn't always a lot that can be done other than wait it out. This time it really got to me emotionally. I was in a real blue funk for awhile and just didn't feel like posting when I felt like that. But, talking with a good friend made me realize that I needed to post, because that is the truth of being chronically ill. Not all times are good, we can't always think our way to happier times, and I would be being dishonest not to admit that I go to that place sometimes too. I write a lot about gratitude and self care, and I fully believe in both and practice them regularly, but I am not immune to bad times.
However, I am beginning to feel better, emotionally at least, and wanted to get back into the swing of things. I miss posting on Wordless Wednesday and Photo Hunt Saturdays and plan to get back to those this week or next.
I did have some fun over the holidays including:
- A day trip into NYC to look at the Rockefeller Center Christmas Tree and skating rink as well some of the store window displays. It was SO crowded the day we went in that it wasn't as much fun as I had hoped, but because I am a former city gal, I made a go of it anyway, taking my mother and friend on a tour of Grand Central Station, The Ford Foundation and Tutor City. Grand Central Station had a holiday laser light show on the ceiling in the main room that was a nice surprise treat.
- For my birthday a friend got us tickets to see "Oliver" at the John W. Engeman theater in Northport. The cast are all equity actors, so it really was Broadway caliber and we enjoyed it immensely. We went out to dinner after to celebrate my turning 42.
- I visited Old Bethpage Village Restoration for a "candle-light walk" with my upstairs neighbor and my mom. It is a village with original houses from the 1700 and 1800's and they had people in period costume at each location. They also had a huge outdoor bonfire, sing-a-longs, music on 18th century violins, as well as hot cider and cookies. It was a nice evening and luckily the weather cooperated.
- Local trips to see Christmas lights in the area. The neighborhood we live in really does it up right, and it was nice to walk (when weather and health permitted) or drive by, and see all the different displays.
- Midnight Mass on Christmas complete with the choir singing before for an hour - the highlight of my holiday for sure!
- Going to Hick's Nursery to see the Christmas displays and watching all the children ooh and aah over the animatronics display. They also had a brass quartet playing Christmas carols and gave bells to the little ones to play along. There is nothing as much fun as seeing Christmas through the eyes of a child.
- Going to see the tree and skating rink at Rexcorp in Uniondale at night.
- Spending time at my friends house after the holidays enjoying her family, good food and lots of laughs.
I talked in my last post about needing to take a break from doctors appointments. Unfortunately my break is over and I have been going to doctor's each day. I have so many things going on, so many tests happening at once, plus my mother to tend to so the days are full once again with that. I have had two appointments (yesterday and today) with new specialists who listened and are taking seriously some of the things that have been wrong for awhile now. It gives me hope. I am changing from the internist I had been seeing, who I had written I was so unhappy with, back to one I had seen years ago whom I had liked. I am hopeful this will lead to a better handling of my overall health situation.
My girlfriend talked me into signing up for a yoga class at our local recreation center. I have to be very careful because I hyper extend easily and injure myself, but I am going to give it a try. I won't be able to do what everyone else can, but I will do what I can.
I don't believe in New Year's resolutions. I try my best throughout the year to take care of myself and improve in ways I can. Each time I fall down, I pick myself up and try again and that's good enough for me. I find the pressure of resolutions usually makes me fail, but just aiming to improve my health or outlook is more manageable, for me anyway.
I will post some photos of some of the fun stuff in the next day or so. I appreciate everyone who visits and reads my blog and the patience you show when I am away for an extended period of time. I hope that everyone had a good holiday season and that the New Year is starting off on a good note. I know the holidays are always a mixed bag for me. The religious part and the spirit of Christmas that brings out the best in others always makes me happy, but at the same time I also feel a sadness for those who aren't here. Let's just say I am happy to be in January and especially past my birthday.
Speaking of birthdays, I know I will get some heat for this, but I want your comments so I am bringing this on myself. . . when did we stop sending paper cards or calling someone for their birthday and begin thinking it is okay to e-mail or send just an e-card? I was offended at how many people took this way out. If it was a money issue, I would be understanding, but those that did it weren't the ones who are struggling financially. Am I the only one who thinks that a card or call is still in order?
Thanks again for allowing me to be real here, even when the reality isn't pretty. It helps to know that there are others who struggle and get through the bad times too. Blogging and meeting so many great people through it, has been a huge blessing. Well, I have rambled enough for one post - see ya again soon.
Monday, December 22, 2008
A Day In The Life of Maureen
Happy Holidays all! I have had a rough couple of days, so I haven't posted in a bit. It seems no matter how long you have been ill, and no matter how many times you think you've learned your lessons, there are always new ones to learn.
I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?
The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.
Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.
So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .
My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!
I had a very frustrating Friday. My internist is not good, and I really need to find someone else, but I have been putting it off. I had a physical scheduled for Friday, and despite the bad weather here I headed off for it. My doctor was running late (so what else is new, right?), her office staff has been at war with one another for a few months now, I am not sure why, but it makes the whole experience really miserable. When I finally got back into a room, the nurse asked about my voice. Now I have been complaining about my this problem with my voice/breathing/throat for almost 2 years. No one will listen. Because my voice was particularly bad then the nurse seemed all interested. Of course she was unable to get a blood pressure reading on me (blamed it on the equipment), then she couldn't get a complete EKG (again, it MUST be the equipment). During all this the doctor came in and out twice and left to take cell phone calls without a word. Now I have been sitting there in just a robe for about an hour with basically nothing done. The doctor comes in and gives me a speech about exercising. She doesn't take any history on MY health problems, takes some general background on family, and listens to my heart and looks at my ears. Then she says something to the effect of "I know you want to get going because it is getting bad out there", as if I had asked her to rush. I have been hearing the staff discussing the fact that she was leaving for an hour to head to the hospital, so I guess I am being rushed out so she can get going. She wants me back in 2 weeks, so she can decide what blood work to run (which should have been done BEFORE I came for this appointment, it WAS a scheduled physical!), but of course she makes more money if she keeps having me back in. Can you tell I was less than pleased?
The roads were treacherous coming home and we had to make a few stops because we knew we probably weren't going to be able to get out again anytime soon. By the time we got in and got lunch it was late and I was exhausted physically and emotionally. I tried to nap, but the snow kept falling and I knew I had better try to get some of it cleared off the car, as well as a path to the car cleared and some de-icer down. Last year my mother fell two days before Christmas on ice and broke her shoulder. She is terrified of it happening again (who can blame her) and I feel responsible for making sure things are safe for her. Now you would think I would realize that I am not healthy enough to shovel snow. Especially heavy, wet, deep snow. But out I trouped with a shovel. After a half hour I was almost dead. I came in an immediately realized I had made a BIG mistake. I had trouble breathing, was hurting so badly the narcotics didn't even ease the pain and started running fever. Later on as I lay weeping on the couch, it all hit me - I am so much sicker than I was just a few years ago. I know it intellectually, I certainly feel it physically, but when I get treated like I did at the doctors that day, it makes me realize that people have absolutely no comprehension of what life is really like for me. Most of my doctors don't even care. When you try to explain you get looks like your crazy, lazy or making things up. It's exhausting to deal with. Then I go and do something stupid to myself, like trying to shovel, and I compound the problem.
Most of the time I am pretty good at setting limits on myself. I know fairly well what I can and cannot do at this point. Every once in a while, like Friday, I have to learn the hard way. I was in bed all weekend, fevers, pain and fatigue wracking my body and regret wracking my spirit. I like to think I am smarter than this, and most of the time I am. It is time for me to admit, once again, that there are more things I cannot do. I HATE admitting it, especially out loud, but I am not doing myself any favors by pretending it is different.
So this is a melancholy Christmas for me. I am grateful for all the blessings I do have, for the parts of my body that still work, for people who do understand and love me anyway - but I feel sad and angry for all I have lost, for what I continue to lose and mostly for the people (especially the doctors and medical professionals, but others as well) who just don't get it. I am sick of using my precious energy trying to make them understand. So my goal between now and the New Year is to have as little to do with them as I can. I am taking a break. I do have to go to the dentist today, still having a bad problem with swollen ligaments in my jaw that has to be addressed. I also have an appointment with a urologist tomorrow about the nephritis finding on my CAT scan. Other than those appointments, I am not dealing with the doctors until after Jan. 1st. My spirit needs a break and needs to be refreshed by the joy of Christmas. Then I will deal with the naysayers again. . .
My best wishes to all my readers for a happy holiday season and a new year filled with health, peace and joy!
Wednesday, December 17, 2008
Bits and Pieces
Well, once again I've been a bad blogger - it's been almost a week since my last post and I haven't participated in my Wordless Wednesday or Photo Hunt games in several weeks. I've been dealing with my own health issues and those of my mom, but it is no excuse, I just need to be more disciplined.
I had a comment from a reader in response to a post from back in October about CVS drug stores carrying the magazine Fibromyalgia Aware - she hasn't been able to find it in her store and when she asked the staff they knew nothing about it. I directed her to the 800 number for CVS as well to FMAWARE.org (the publishers), but I am wondering if anyone else has had a problem getting a copy. I bought my Fall issue as soon as they went on the stands, but I am wondering since it is a quarterly publication if they only ordered a small batch to see how sales would be. If anyone else has any experience with this, good or bad, and could share it, I would appreciate feedback. Thanks!
My mom had her colonoscopy last Thursday. Other than enduring the night before with the prep, things went pretty well. At this moment the C-Diff appears to be gone (although we've been told that before only to have it reappear!). they took some biopsies to make sure they aren't missing anything important, and when she goes back in a few weeks we should have a more complete answer as to what has been going on with her. I want to thank everyone who has asked about her and also sent prayers and good wishes.
I have an appointment on Friday with the urologist to see if there is anything to this mild nephritis finding on my CAT scan. My GYN is concerned that with my history of endometriosis and adhesions, there is the possibility of an adhesion causing a kink or blockage, which could cause nephritis. Of course, never being able to be the simple patient, I am allergic to contrasts and dyes needed to do studies, so we will have to see what the urologist recommends as the next step and proceed from there.
I have been in a "if I have to see one more doctor I am going to scream" mood, so I have put off getting in touch with several other specialists I need to see. I know it isn't a long term solution, I just want to get through the holidays and my birthday without having 2 or more appointments each day! Between mom and I it feels like it is all we ever do anymore.
We did have a pleasant day on Sunday. After Mass we headed over to a nursery that does a lot of decorating and such for Christmas. It is called Hicks and I hadn't been there since I was a little girl. They have a small area with animatronics that you walk you through, different Christmas scenes. It was fun to watch the children as they looked and "oohed and aahed" at Santa or snowmen or penguins. Many parents had their kids dressed up because there are lots of good places to get those all important Christmas card photos. My mother and I both enjoyed watching the little ones enjoy themselves. There was a quartet set up in the middle of the greenhouse and they were playing Christmas songs. They had brought along all sorts of bells that the kids could pick up and play along with. What fun to watch a little toddler shaking the bells and singing "Frosty" or "Jingle Bells".
We came home and had a bite to eat before heading out to a local parish for "Lessons and Carols". The choir at St. Anne's in Garden City is amazing and it was so nice to hear the scripture readings and then the songs. We met up with some friends there and it was fun to be together and celebrate the real meaning of the holiday. After dinner we headed over to the Rexcorp tree and ice rink. For those of you not familiar with the area, it is Long Islands answer to Rockefeller Center. The tree is even bigger than the one in NYC and there is an ice skating rink as well. They decorate the inside of the office buildings, although this year that part was rather disappointing. It was a cold night, but we enjoyed watching the skaters and looking at the gorgeous tree. We came home in time to catch HGTV's special on Christmas windows 2008. I was walking to shut off the lights and caught my little toe on the coffee table and broke it! OUCH!! I am still hurting and limping. It was so stupid, but these things happen. Except for that, it was a nice day.
I am still having a lot of pain in what I originally thought was my tooth, but it turns out to be my ligament in my jaw. There is either an infection or perhaps a crack in a tooth. My dentist had me do a round of antibiotics, but I am still really hurting. It never ends when you have autoimmune problems, one thing just leads to another. I am also slowly decreasing my dose of hydrocortisone, so I have had some issues with that as well.
Overall it has been such a good holiday season compared to last year that I can't complain even with all that is going on. I encourage you all to find fun, free and meaningful things to do that will bring you into the true reason for the season. Today we went to the local elementary school for their holiday concert. Seeing those sweet little ones singing, playing instruments and enjoying themselves really gave my spirits a lift and brought me back to the wonder of being a kid again. Be grateful for all you do have in these tough economic times (my landlord finally got us a new stove - YEA!!!), and pray for those who aren't as fortunate. Right now there are so many good ways to help, even just offering to drop food off if you can't afford to donate a whole meal, sending a card to soldier in Iraq or Afghanistan or at Walter Reed as I had posted about earlier. You don't have to spend a lot to help. Heck, give someone a genuine compliment, we are all so harried and hurried this time of year it will make their day!
Thanks for reading my blog and for caring about me and my family. I will post some pictures of the tree so you can all see what that looked like. This weekend I am due to go into NYC to see the Rockefeller Center tree and the Christmas windows. If my toe allows it, I plan to get as many pictures as possible and share them here for those of you who don't live close enough to get to see them in person!
I had a comment from a reader in response to a post from back in October about CVS drug stores carrying the magazine Fibromyalgia Aware - she hasn't been able to find it in her store and when she asked the staff they knew nothing about it. I directed her to the 800 number for CVS as well to FMAWARE.org (the publishers), but I am wondering if anyone else has had a problem getting a copy. I bought my Fall issue as soon as they went on the stands, but I am wondering since it is a quarterly publication if they only ordered a small batch to see how sales would be. If anyone else has any experience with this, good or bad, and could share it, I would appreciate feedback. Thanks!
My mom had her colonoscopy last Thursday. Other than enduring the night before with the prep, things went pretty well. At this moment the C-Diff appears to be gone (although we've been told that before only to have it reappear!). they took some biopsies to make sure they aren't missing anything important, and when she goes back in a few weeks we should have a more complete answer as to what has been going on with her. I want to thank everyone who has asked about her and also sent prayers and good wishes.
I have an appointment on Friday with the urologist to see if there is anything to this mild nephritis finding on my CAT scan. My GYN is concerned that with my history of endometriosis and adhesions, there is the possibility of an adhesion causing a kink or blockage, which could cause nephritis. Of course, never being able to be the simple patient, I am allergic to contrasts and dyes needed to do studies, so we will have to see what the urologist recommends as the next step and proceed from there.
I have been in a "if I have to see one more doctor I am going to scream" mood, so I have put off getting in touch with several other specialists I need to see. I know it isn't a long term solution, I just want to get through the holidays and my birthday without having 2 or more appointments each day! Between mom and I it feels like it is all we ever do anymore.
We did have a pleasant day on Sunday. After Mass we headed over to a nursery that does a lot of decorating and such for Christmas. It is called Hicks and I hadn't been there since I was a little girl. They have a small area with animatronics that you walk you through, different Christmas scenes. It was fun to watch the children as they looked and "oohed and aahed" at Santa or snowmen or penguins. Many parents had their kids dressed up because there are lots of good places to get those all important Christmas card photos. My mother and I both enjoyed watching the little ones enjoy themselves. There was a quartet set up in the middle of the greenhouse and they were playing Christmas songs. They had brought along all sorts of bells that the kids could pick up and play along with. What fun to watch a little toddler shaking the bells and singing "Frosty" or "Jingle Bells".
We came home and had a bite to eat before heading out to a local parish for "Lessons and Carols". The choir at St. Anne's in Garden City is amazing and it was so nice to hear the scripture readings and then the songs. We met up with some friends there and it was fun to be together and celebrate the real meaning of the holiday. After dinner we headed over to the Rexcorp tree and ice rink. For those of you not familiar with the area, it is Long Islands answer to Rockefeller Center. The tree is even bigger than the one in NYC and there is an ice skating rink as well. They decorate the inside of the office buildings, although this year that part was rather disappointing. It was a cold night, but we enjoyed watching the skaters and looking at the gorgeous tree. We came home in time to catch HGTV's special on Christmas windows 2008. I was walking to shut off the lights and caught my little toe on the coffee table and broke it! OUCH!! I am still hurting and limping. It was so stupid, but these things happen. Except for that, it was a nice day.
I am still having a lot of pain in what I originally thought was my tooth, but it turns out to be my ligament in my jaw. There is either an infection or perhaps a crack in a tooth. My dentist had me do a round of antibiotics, but I am still really hurting. It never ends when you have autoimmune problems, one thing just leads to another. I am also slowly decreasing my dose of hydrocortisone, so I have had some issues with that as well.
Overall it has been such a good holiday season compared to last year that I can't complain even with all that is going on. I encourage you all to find fun, free and meaningful things to do that will bring you into the true reason for the season. Today we went to the local elementary school for their holiday concert. Seeing those sweet little ones singing, playing instruments and enjoying themselves really gave my spirits a lift and brought me back to the wonder of being a kid again. Be grateful for all you do have in these tough economic times (my landlord finally got us a new stove - YEA!!!), and pray for those who aren't as fortunate. Right now there are so many good ways to help, even just offering to drop food off if you can't afford to donate a whole meal, sending a card to soldier in Iraq or Afghanistan or at Walter Reed as I had posted about earlier. You don't have to spend a lot to help. Heck, give someone a genuine compliment, we are all so harried and hurried this time of year it will make their day!
Thanks for reading my blog and for caring about me and my family. I will post some pictures of the tree so you can all see what that looked like. This weekend I am due to go into NYC to see the Rockefeller Center tree and the Christmas windows. If my toe allows it, I plan to get as many pictures as possible and share them here for those of you who don't live close enough to get to see them in person!
Thursday, October 23, 2008
My Arch Enemy Makes A Return
PAIN!! It's back--not a surprise, but certainly not a thrill either. I am doing my best to cope. I am using the relaxation techniques I have been taught, using positive self-talk and distracting myself with good things as much as possible.
Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.
It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.
I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?
For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:
For John McCain
For Barack Obama
Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.
Tomorrow I will call the pain management doctor, who will no doubt be skeptical that "such a small drop in dosage would increase your pain". I will carefully explain to him what is going on, that I felt I should call before the pain got out of control, before I had to interrupt his weekend. He will hem and haw and eventually come up with a game plan. I will be exhausted before the call ends and feel like someone wrung me out physically and emotionally.
It all comes back to balance--trying to balance the pain with being able to function. Trying to balance having a life with chronic illness that involves more than medication, doctors appointments and prescriptions. Trying to live an authentic life, one that is true to who I really am, without being whiny or pitying. Trying, once again, to get others to understand that it isn't a choice, that we all do the best we can each day. Trying to balance caring for my mom, who is also ill, with caring for myself.
I would love to hear your feedback. How do you balance your lives? How have you gotten through, either to doctors, friends, loved ones or strangers? What coping mechanisms do you use for your pain, fatigue and the endless other symptoms we all live with?
For more information I have attached links from the New England Journal of Medicine on each candidates stand on health care:
For John McCain
For Barack Obama
Unfortunately, these articles point out what I have been saying all along, neither candidate has a sufficient answer to the health care crisis. Until we fix our broken system, I don't think anyone will.
Tuesday, October 21, 2008
Without Answers
I had my appointment with the infectious disease doctor today. Luckily, some of the really bad things that could be wrong with me were negative. That's the good news. The bad news is that we still don't know what IS wrong. That means more blood tests and some CT scans next week. The doctor will be away until next Tuesday, so she has her nurse looking for some results and making sure to get those to internist if they need to be dealt with before her return. I am impressed with the fact that she isn't giving up and is trying to find answers.
She is going away to a medical conference on diabetic ulcers. She told me this because we were talking about doctors and how they like to deal with the "sexy" or "exciting-high profile" things-- like in her field-- anthrax, or some such seminar. She said she likes to learn things that help people in the day to day. By going to conferences such as this one, she has been able to help people avoid amputation and have a better quality of life. I was shocked to hear a doctor realize the importance of those things. She understood completely how many doctors don't want to deal with chronic illness patients because we don't provide easy answers, sometimes there aren't answers and it isn't all exciting or worthy of publication. The fact that despite that, she wants to help, wants to see the quality of my life improve, really touched me. By the way, she works at one of the top hospitals in the country, so it isn't like she couldn't reach for those other areas of study. In fact, I would guess she would be held in more esteem by some for doing that, but she wants to help her patients. It is heartening to see doctors like her still practicing, because I have seen too many on the other side of line.
Tonight will be my first drop in pain medication and I don't know what to expect. I am hoping for the best, but prepared for the worst. I have received some wonderful support from the on-line community, which is so uplifting. Thanks for caring and for taking the time to let me know you are there with me.
She is going away to a medical conference on diabetic ulcers. She told me this because we were talking about doctors and how they like to deal with the "sexy" or "exciting-high profile" things-- like in her field-- anthrax, or some such seminar. She said she likes to learn things that help people in the day to day. By going to conferences such as this one, she has been able to help people avoid amputation and have a better quality of life. I was shocked to hear a doctor realize the importance of those things. She understood completely how many doctors don't want to deal with chronic illness patients because we don't provide easy answers, sometimes there aren't answers and it isn't all exciting or worthy of publication. The fact that despite that, she wants to help, wants to see the quality of my life improve, really touched me. By the way, she works at one of the top hospitals in the country, so it isn't like she couldn't reach for those other areas of study. In fact, I would guess she would be held in more esteem by some for doing that, but she wants to help her patients. It is heartening to see doctors like her still practicing, because I have seen too many on the other side of line.
Tonight will be my first drop in pain medication and I don't know what to expect. I am hoping for the best, but prepared for the worst. I have received some wonderful support from the on-line community, which is so uplifting. Thanks for caring and for taking the time to let me know you are there with me.
Thursday, September 18, 2008
First Time Visits With A New Doctor
An annoying, but realistic part of being someone with multiple chronic illnesses from Fibromyalgia to chronic pancreatitis to endometriosis is that you will have many different doctors involved in your care. Most people have trouble finding one doctor they are happy with, so multiply that by the number of illnesses most of us suffer from, and you can imagine what it must be like for a chronically ill person to find good doctors. We are all looking for someone who is medically competent of course, but it goes so much beyond that, and what qualifies a doctor as "good" can vary widely from one patient to the next. In my case, I want someone who not only knows how to treat my illness, but who knows how to treat me as an intelligent part of my own healthcare team. In order for me to work well with a doctor I need to know that they respect how well I know my own body and what certain symptoms mean for me. In return I try to listen with an objective ear to the doctor's experience and what their gut reactions might be. So much of medical care is subjective. There are tests that can rule certain things in or out, but at the end of the day I want a doctor who listens and really wants to do all he or she can to work with me on the best quality of life I can achieve.
Like everyone else, healthy or chronically ill, I have had my share of both good and bad doctors. I even have a few that have been exceptional. But it doesn't matter how long you have been sick, or how many good experiences you have had, it is still nerve wracking to have to start with a new doctor. This can happen for a variety of reasons; you move, your healthcare plan changes providers on you, your doctor retires, or your relationship with your doctor is shattered due to something out of your control to fix. Whatever the reason, it puts you back to a place that feels emotionally vulnerable.
I moved from state to state almost a year ago. In that time I had a lot of things going on with my health status that needed to be addressed. Not having the energy, physical or emotional, to tackle them all at once, I started with one problem and worked my way through. Doing this required meeting with new specialists of many kinds. Some of the doctors were a great fit right away, some required a little tweaking of the relationship to make things work for both of us, and some weren't right for me, causing me to start back at step one until I found the right doctor in that particular speciality.
Today I had a first meeting with a new gastroenterologist. I felt all the old anxiety creep back in. Would he be knowledgeable about my condition? Compassionate? Understanding of how all my other illnesses interrelate? Would he believe in me and work with me to help me to live my life as fully as I want to? Would he work well with the other team of doctors I have already assembled? I had an actual knot in my stomach as I drove to the appointment this afternoon. It takes so much physical, mental and spiritual energy to go through everything from the beginning and to try to assess in one meeting if this will be a successful relationship. I certainly have had my share of bad experiences, and they always leave me feeling drained, spent and frustrated.
I had the pleasant experience of having dreaded this appointment today for nothing. The doctor I met with was on time, professional, compassionate, thorough and wanted not only my input, but that of my other team members as well. Although I am grateful for the positive experience, I am all too aware of all the times this has not been the outcome. In a system that requires doctors to see ever more patients in a day, and a host of problems that require time and attention, you are bound to have conflict. So I guess I feel I dodged a bullet today, but there are still several specialists I need to find, and I can't shake the feeling that, based on prior experience, they won't all go as smoothly as today. That being said, I am thankful to have one more good doctor and life affirming experience in my saga!
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