I want to thank everyone who has been praying for mom and I, as well as those who have sent good thoughts and kind words our way. Mom's eye's are itching terribly since the surgery and we don't know whether it is a reaction to the ointment we are using or just from the surgery itself. So far she is doing alright, although she isn't getting much sleep so that is wearing her out.
I am developing either the flu or a good sinus infection, or quite possibly both. That isn't such a surprise given the physical and emotional stress I have been under, but it doesn't make being the caregiver any easier. It will be weeks before mom can drive again, so I am it for now. Yesterday for her follow up appointment we only made it by the grace of God as I was so nauseous that I was holding a basin to get sick in the whole way there and back.
Please continue to keep us in your thoughts and prayers, it is the best medicine we can both receive and we truly appreciate it.
Showing posts with label Chronic Illness. Show all posts
Showing posts with label Chronic Illness. Show all posts
Saturday, September 26, 2009
Tuesday, September 22, 2009
What A Diaster!
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.
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.
Wednesday, September 9, 2009
Patients For A Moment is up at Getting Closer To Myself
I just wanted to let everyone know that the latest edition of the blog carnival Patients For A Moment is now up over at Getting Closer to Myself. I want to thank Leslie for her hard work in hosting and putting together this edition of the carnival, as well as for including my post in it! Please take some time to head over and read some great writing!
Tuesday, August 25, 2009
September is Pain Awareness Month
I have blogged about my own experience of living with pain, both chronic and acute. Now I am asking you to do something to help me and the 76.5 million other Americans who live in pain. Please support the American Pain Foundations Power Over Pain Action Network in raising awareness and helping to dispel myths surrounding pain and the treatment of it. To find out more about what you can do, as well as to learn more about the organization, please go to Conquering Pain Together to get all the details on what you can do to help. There is an easy to use on-line petition you can sign, as well as a wonderful list of 10 things you can do in 10 minutes. Thank you in advance for your helps and attention in this most important matter.
Monday, August 24, 2009
Looking for Suggestions
Okay, so I am still in pain, and except for trips to the restroom I am pretty much bed-bound at the moment. I am watching TV and DVD's, I have been reading (as much as I can concentrate with the pain), praying and getting on-line very briefly. I have a puzzle book which I am going to give a try for a change of pace. I am wondering what all of you do when you are sick, in a flare or in pain to occupy your time and to try to take focus off what hurts? Thanks in advance for your suggestions!
Saturday, August 22, 2009
Hurting
I've spent the entire day in bed, in terrible pain and unable to eat or drink anything much. I am grateful to have the new netbook which allows me to log into the internet at times like this, when I usually can't keep in touch. It helps to have the support and friendship of the blogging and chronically ill communities, especially when things aren't going so well. I am trying to keep myself from focusing on the pain by watching tv, reading and thinking about writing. Sometimes the pain is so bad I can't focus on much else, but the more I focus on other things, the sooner this too shall pass (I hope!).
Friday, May 29, 2009
The Perfect Storm
Most of you know I really TRY to see upbeat side of things, and although I get down, I don't stay there long. This recent episode has put all of that to the test and then some.
Yesterday I went to the pain management doctor. He changed my dose in an attempt to get things back under control after all I have been through. This in itself it upsetting, because before the insurance company messed things up, when I was on medication and stable, I was taking a dose that is half of what I am taking now. So thanks to all my body has been put through these past 4 months, I am on double the medication I was.
My doctor is an Orthodox Jew. I mention this because it has bearing on the rest of the story. I saw him yesterday afternoon, which is unusual for me, I usually see him early on Fridays, but because last night and today are both Jewish holidays he wasn't going to be working. He wrote my script and I headed straight to the pharmacy with it. I've learned my lesson well with this because if there is a problem and I wait to get it filled, they can't reach the doctor.
I arrived at the pharmacy to find their computer system down and them unable to fill prescriptions because of it. For those of you who are lucky enough to not need pain medication I can hear you now, "why didn't you just have it filled elsewhere?". Besides the fact that I truly believe that it is safer to fill everything at one place so they have an accurate record of all the medications I am on to check for interactions, etc. . . there is also the issue of taking a narcotic pain medicine. If you start filling prescriptions at different pharmacies, it raises a red flag with the government and your insurance company. They see it as "drug shopping", which is evidently something that addicts do in an attempt to get more of the medicine than they are supposed to have. In any case, I left the prescription with my pharmacist who promised he would fill it that night or first thing this morning, depending on when the computers came back up. In the meantime, he gave me 3 pills to get by until it was done.
This morning when I went to call to see if it was ready for pick up, I found a voice message in my inbox from the pharmacist. My insurance company was refusing to fill the prescription on the basis of number of pills prescribed in a 23 days period and (you can't make this stuff up folks!) they also had approved my medication in the brand form at the old dose, so I am now informed that my doctor will have to go through the WHOLE APPEALS PROCESS again for the new dose!
The reason I mentioned about my doctor being Jewish is that normally I could reach him and we could talk about what I might be able to do as an option, but as it is a Holy Day for him, I cannot reach him until Monday. This left mom and I trying to figure out what the best choice was, which ended up being buying the prescription outright for over $1200 on mom's credit card (this is a 30 day supply mind you!!). The other kicker to this is that the $1200 won't even count towards my "donut hole" because they haven't approved this medication now so as far as the insurance company is concerned it doesn't exist! That means I am still paying for 100% of ALL my medications while I am in the donut hole, not just my pain medicine.
I will have to contact the doctor first thing on Monday and get him working on the appeal, which I am sure will put a strain on relationship as it was an arduous task to go through once and neither of us will be happy to do it again.
In the meantime, I am where I always am, stuck in the middle with little or no control over any of the situation. I was reading Laurie Edwards blog post from A Chronic Dose the other day on illness and PTSD and thinking of how this situation makes me feel like I did two years ago when mom and I were forced to move back up to NY due to health problems and find a pain management doctor for me. We went through so much and it was so upsetting, and now it feels like that all over again. All the fear, the uncertainty, the frustration come back in waves. Even though I remind myself that it worked out then, it still scares me and makes me feel like I did back then.
I wonder how many of us go through this during really bad flares, etc. . . Right now my normally hopeful nature is being beaten down by the stress and fear, and I am more afraid than I have been in years. I also know my body and emotions are off kilter from all the medication changes. I just wish things didn't have to be so hard, and frankly at the moment I wish I had a partner or someone whom I could trust to handle all of it so I could just concentrate on getting well and not fighting the system day after day.
Yesterday I went to the pain management doctor. He changed my dose in an attempt to get things back under control after all I have been through. This in itself it upsetting, because before the insurance company messed things up, when I was on medication and stable, I was taking a dose that is half of what I am taking now. So thanks to all my body has been put through these past 4 months, I am on double the medication I was.
My doctor is an Orthodox Jew. I mention this because it has bearing on the rest of the story. I saw him yesterday afternoon, which is unusual for me, I usually see him early on Fridays, but because last night and today are both Jewish holidays he wasn't going to be working. He wrote my script and I headed straight to the pharmacy with it. I've learned my lesson well with this because if there is a problem and I wait to get it filled, they can't reach the doctor.
I arrived at the pharmacy to find their computer system down and them unable to fill prescriptions because of it. For those of you who are lucky enough to not need pain medication I can hear you now, "why didn't you just have it filled elsewhere?". Besides the fact that I truly believe that it is safer to fill everything at one place so they have an accurate record of all the medications I am on to check for interactions, etc. . . there is also the issue of taking a narcotic pain medicine. If you start filling prescriptions at different pharmacies, it raises a red flag with the government and your insurance company. They see it as "drug shopping", which is evidently something that addicts do in an attempt to get more of the medicine than they are supposed to have. In any case, I left the prescription with my pharmacist who promised he would fill it that night or first thing this morning, depending on when the computers came back up. In the meantime, he gave me 3 pills to get by until it was done.
This morning when I went to call to see if it was ready for pick up, I found a voice message in my inbox from the pharmacist. My insurance company was refusing to fill the prescription on the basis of number of pills prescribed in a 23 days period and (you can't make this stuff up folks!) they also had approved my medication in the brand form at the old dose, so I am now informed that my doctor will have to go through the WHOLE APPEALS PROCESS again for the new dose!
The reason I mentioned about my doctor being Jewish is that normally I could reach him and we could talk about what I might be able to do as an option, but as it is a Holy Day for him, I cannot reach him until Monday. This left mom and I trying to figure out what the best choice was, which ended up being buying the prescription outright for over $1200 on mom's credit card (this is a 30 day supply mind you!!). The other kicker to this is that the $1200 won't even count towards my "donut hole" because they haven't approved this medication now so as far as the insurance company is concerned it doesn't exist! That means I am still paying for 100% of ALL my medications while I am in the donut hole, not just my pain medicine.
I will have to contact the doctor first thing on Monday and get him working on the appeal, which I am sure will put a strain on relationship as it was an arduous task to go through once and neither of us will be happy to do it again.
In the meantime, I am where I always am, stuck in the middle with little or no control over any of the situation. I was reading Laurie Edwards blog post from A Chronic Dose the other day on illness and PTSD and thinking of how this situation makes me feel like I did two years ago when mom and I were forced to move back up to NY due to health problems and find a pain management doctor for me. We went through so much and it was so upsetting, and now it feels like that all over again. All the fear, the uncertainty, the frustration come back in waves. Even though I remind myself that it worked out then, it still scares me and makes me feel like I did back then.
I wonder how many of us go through this during really bad flares, etc. . . Right now my normally hopeful nature is being beaten down by the stress and fear, and I am more afraid than I have been in years. I also know my body and emotions are off kilter from all the medication changes. I just wish things didn't have to be so hard, and frankly at the moment I wish I had a partner or someone whom I could trust to handle all of it so I could just concentrate on getting well and not fighting the system day after day.
Wednesday, May 27, 2009
Advocacy
Since that was the topic I left off on before all this started, I wanted to pick up the thread briefly again to say I have been self advocating these past few months, and although it is exhausting and frustrating, it is so necessary! I don't have a spouse or significant other to take care of it for me, so I have to take care of myself. There are days I can't do it, I won't lie, but I try my hardest to fight for me, because let's face it, no one else will!
The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.
I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.
I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!
The fact that I have put thought into things BEFORE a flare or catastrophe has helped to make things easier. I have also accepted any and all help offered, no matter how small or insignificant it may have seemed. Anything I don't have to do is a help right now. If someone offers to pick up milk one day, I let them. If they offer to make a phone call or drive me, I say thank you! I can't be proud and pretend I can do everything when I am falling apart myself.
I still don't have a perfect support system. Other than my mom, I have no family help at all. I have few friends who understand or even offer. But there are some people who try and I appreciate it. I am brainstorming right now as to other resources for help, perhaps through my church, because we need the help. The point to advocating isn't to perfect, it is to keep trying and to not give up on finding help when you need it. It is also about being that help when you can.
I can and do offer myself to others when I am able because I know how hard it is. Believe me it comes back to you sevenfold. I don't do so others will help me, I do it because I know how grateful I feel when my neighbor offers to run to the store for me, when someone else takes the trash or recycling to curb on Sunday nights when I can't get out of bed, etc. . . Be a friend to others and you will always have friends. Some won't ever get what you are going through, but that's alright. It isn't a score keeping game, it's life!
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!!
Monday, April 13, 2009
Update
I haven't been posting a lot lately, as many of my regular readers have noted. I had been planning to have surgery, which was then postponed due to infection. I am still not able to schedule the surgery because we haven't resolved the infection issue as of yet. In addition to dealing with all that entails, I have been switching pain medications. The pain medication I was taking was working well, it controlled my pain with side effects that were live-able. Unfortunately, my prescription coverage decided to stop paying for the particular drug I was taking and the cost for me to buy it out of pocket was not even a possibility (think mortgage payment and you'd be in the right ballpark!). This led me to try the generic alternative of the same drug. The generic did nothing to control pain and caused lots of unpleasant side effects. Just recently my pain management doctor changed my medication altogether in the hopes that we will find something to get the pain back under control. All along he has been fighting with my insurance company, trying to get them to approve the original medication again since it works for me and I can tolerate it. Of course we all know it isn't what the doctor thinks, or what works best for the patient anymore, it all comes down to money and what the insurance company will pay for.
So, I have been in a lot of pain. I have been fatigued from the pain and from fighting the infection that won't go away. I have had other issues as well, but those are the two biggies which have kept me from blogging. Most of my days are spent trying to do the things I HAVE to with little or no energy to deal with the things I WANT to (like blogging). I have missed the contact and the conversation of this blog and the wonderful readers and friends I have made through it.
I intend to do my best to keep blogging as I am able and I appreciate the support and understanding you show me when I am "quiet" for awhile. I am also way behind in reading the blogs I usually keep up with, so I apologize to those of you who haven't seen me commenting on your posts either.
It's another fact of being chronically ill, we don't always get to control things. I used to get really upset over that fact, and feel guilty because I couldn't keep up with other people. Now I realize that I am just fine the way I am. I take care of myself when I need to and I know that the people who care about me will understand. I am so grateful to have that peace. It was a long time coming, but it has made all the difference.
Looking forward to better days ahead and lots of posts and conversations with you all!
So, I have been in a lot of pain. I have been fatigued from the pain and from fighting the infection that won't go away. I have had other issues as well, but those are the two biggies which have kept me from blogging. Most of my days are spent trying to do the things I HAVE to with little or no energy to deal with the things I WANT to (like blogging). I have missed the contact and the conversation of this blog and the wonderful readers and friends I have made through it.
I intend to do my best to keep blogging as I am able and I appreciate the support and understanding you show me when I am "quiet" for awhile. I am also way behind in reading the blogs I usually keep up with, so I apologize to those of you who haven't seen me commenting on your posts either.
It's another fact of being chronically ill, we don't always get to control things. I used to get really upset over that fact, and feel guilty because I couldn't keep up with other people. Now I realize that I am just fine the way I am. I take care of myself when I need to and I know that the people who care about me will understand. I am so grateful to have that peace. It was a long time coming, but it has made all the difference.
Looking forward to better days ahead and lots of posts and conversations with you all!
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.
Monday, March 2, 2009
Snowstorms and Illness
Today we had a good old fashioned blizzard - yep a full on 14 inches of heavy, wet snow! When I was a kid I couldn't wait for such storms, it meant a day off from school. As an adult it isn't such a joyful event.I realize that what I am about to say can apply to healthy people to a degree as well when you are talking about such large amounts of snow, but allow me to rant anyway:
- On a good day I can barely lift groceries to bring them in from the car, so you can imagine that shoveling heavy snow isn't possible for me.
- Of course the blizzard had to hit on the day I have an appointment with my pain management specialist, and I am having trouble with my medication so I needed to see him today.
- This being New York, nothing but school closes for snow, so the doctor's office wasn't exactly thrilled that I cancelled my appointment, despite the fact I couldn't get out my door, no less my driveway.
- My landlord is supposed to have snow removal service as part of the price of our rent, however the service is spotty at best. Sometimes they arrive the day AFTER a storm ends sometimes they don't arrive at all.
- My mother and I are stuck in the house until we can find someone to shovel us out, or the snow removal people make their appearance.
On the flip side, I am grateful that we have a warm roof over our heads. Because we had advance warning the storm was coming we have food to eat and will be alright if we are stuck indoors for a few days. I know that many people aren't so blessed, they are cold or hungry or worse. So I am going to try to look at the part of my glass that is half full and not the empty part. Harder to do when I am in pain, but good practice for me, especially in this season of Lent. So for the moment, thank you God for supplying me with another lesson in humility and thankfulness, please help me to use it to learn how deeply you love me and care for me, even when I think I am forgotten - You never forget me!
Monday, February 16, 2009
Life Lessons
"Life is a great big canvas, and you should throw all the paint you can on it."
-- Danny Kaye
There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:
SECRET #1
Never forget who you are and never let illness define it!
-- Danny Kaye
There are secrets to living a happy life with chronic illness. They may differ depending on the person and the illness, but the essential parts remain the same. I want to explore some of these secrets that I have learned, the hard way, through my years of living with, and thriving despite having chronic illness:
SECRET #1
Never forget who you are and never let illness define it!
- Seize every opportunity you can to have fun and to connect to the parts of yourself that make you who you are. It is easy to get bogged down in the day to day minutiae of the chronic illness grind - the doctors, the medications, the pain and fatigue.
- Take a play break, make a snow angel, color a picture, sing your favorite song out loud, call a friend and laugh, whatever connects you to the happy you. I don't promise you it will make everything all better, but when done regularly it will help to remind you there is more to you than illness.
- Sometimes just knowing that helps you to go on, and once you go on, you tap into the real parts of you that have always been there - these are the parts the illness seems to have stripped away.
- You may have to get creative here, illness can and does have a very real effect on our bodies, but you can find things you CAN do - celebrate your abilities, don't dwell on your disabilities!
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!
Friday, January 16, 2009
Some of my Writing
I am a writer, I guess all of us bloggers are really. . . and today I wanted to share a piece I had written for my writer's group. The idea was to discuss your most important day, however you interpreted that phrase. Below is what I wrote.
MY MOST IMPORTANT DAY
The morning dawned clear and full of promise. As the alarm rang, I hit the off button ans sprang from my bed ready to face the day and whatever it held. I zipped through all my morning routine, from shower to breakfast and was on the way out the door in a little over an hour. I continued at full pace all day at work, got lots accomplished and stopped to meet friends after work for a drink. When I arrived home after 10 pm, I did a quick load of laundry, finished the breakfast dishes I had left behind and made my "to-do" list for the next day. Before heading to bed around midnight I set out my clothes for the following morning and watched a little of the late night talk shows before drifting off to sleep to repeat the same scenario all over again the following day. I didn't know it at the time, but this day, and many days like it, were my most important days. You see, I'm one of millions of Americans who battles multiple chronic illnesses, most of which are called "invisible illnesses", not because they aren't real, but because their affect isn't always obvious to the untrained eye.
Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.
My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?
Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.
Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!
The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.
If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.
Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.
I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?
- - Maureen Hayes 2008 copyrighted
Depending on when and where you meet me, you might not even know I am sick. But sick I am, and there isn't a part of my life that hasn't been changed over the past 12 years. BBI (Before Becoming Ill) I took all the parts of a normal day for granted. All the tasks that we each do, personal hygiene, errands, socializing, work, play, exercise and even sleep were givens, a part of everyone's life. I never had to make a decision between having the energy to shower or the energy to vacuum the rug; there was energy enough for all of it.
My knowledge of our medical system, of drugs, hospitals and doctors was limited to the occasional bout of flu and my annual GYN exam. I took my health for granted, it would always be there, right? I mean after all, I was 30 years old, why would I think otherwise?
Now after years of hard won knowledge, not only of the medical system, but more importantly of my own body, I realize how naive I was then. But in my naivete was also a wonderful care-freeness, the same trait that helped to form that most important day, the day that existed before illness robbed me of pieces of myself bit by bit. The day when I didn't have to make every single choice based on how I am feeling, how I will feel if I do a particular action, eat a particular food, or take a particular medication. The day, not extraordinary, but ordinary to all who are healthy, and envied by all who are not.
Most people, if they are blessed to live long enough, will face the loss of being able to do certain things. After all, our bodies age and we expect that as they do we may have to give up activities or at least tone them down. The marathon runner may become a jogger, the jogger a walker and so on. We even realize that we will have aches and pains and tire more easily, but we never expect it to happen while we are young!
The heinousness of chronic illness is that it is chronic, meaning it NEVER goes away. Some days are better than others and some treatments provide temporary relief of some symptoms, but there is no cure, no getting better for good. And most chronic illnesses progress, even if very slowly, stealing from you like a thief in the night. Each symptom brings its own array of collateral damage. Pain for instance makes sleep difficult, which increases fatigue and decreases mental clarity. It's like a game of dominoes, one symptom tumbling into the next and knocking into the next and so on.
If you are lucky enough to be healthy, you probably get up and begin your day without any thought to how your physical body is doing (like my most important day), not because you are ignorant, but because you can. Your body isn't calling the shots from the moment you open your eyes (assuming you were lucky enough to sleep the night before!). That is/was my ideal day! The days that occurred, without notice, when I went about my business without having to weigh everything I did and determine what would be possible and what wouldn't. To not have to cancel plans made with a friend due to an unexpected flare. To be able to help someone else at a moments notice because I had the energy and ability to do so. To laugh and run and yes, play, with abandon - to love life and those in it to the fullest without compromising or paying for it later.
Since I can't have that day back, I've had to learn to accept life as it now, as it changes each day and to be grateful for all that I can do. Instead of putting my focus on what I have lost, I look at what I have gained. Many people can't imagine what good could come from my illness. At first it was hard for me to see it myself. But, over time, I realized that although I have changed in ways I wished I hadn't, I also changed for the better in other ways. I appreciate the little things now in a way I never did BBI. I am more patient, with myself and others, recognizing as Philo of Alexandria said, "Be kind, for everyone you meet is fighting a great battle". I am not as quick to judge others, especially from appearances, because I know all too well how misleading that can be.
I've learnt a lot about who I am, how strong I am and about who my real friends are. Most people want to be around during the good times in our lives, but who at your side when you are scared, or sick or in pain? Who understands when you have to cancel plans at the last minute yet again? Who is willing to be with you, even when they can't make it better, but knows you need someone to talk to, or cry with, or laugh with? These are the people I treasure beyond telling, because we live in a society that judges us by what job we hold or what financial success we attain, and if judged by those standards, I would be be considered a failure in most eyes. I am on disability and my financial situation is tenuous at best. But there are people who see the value in me, the human being, the funny, kind, smart, caring person trapped inside all the illness. Most importantly, I've learned to see myself that way, to be proud of who I am and to know I have value as person. I can still love, laugh and be a support or inspiration to others, so while I may not always be able to do all I would like in a day, I can take comfort in the knowledge that I've done my best, and when all is said and done, can any of us, healthy or not, ask for more than that?
- - Maureen Hayes 2008 copyrighted
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.
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!
Sunday, December 7, 2008
Another Lesson In Thankfulness
I am posting the following which I received in an e-mail, I have no idea who the author is, so if anyone knows, please get in touch so I can credit the right person!
Be thankful that you don't already have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don't know something,
for it gives you the opportunity to learn.
Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.
Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you're tired and weary,
because it means you've made a difference.
It's easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles,
and they can become your blessings...
This is true for everyone, but especially important to remember when you battle a chronic illness. I know that I have learned so much through this journey that I might never have learned, and although I don't enjoy being ill, there are positive things that have come from it. I have met some wonderful people, both on-line and in "real" life. I have learned about talents and strengths I possess that I never knew I had. I have let go of perfectionism as my ideal.
I am heading into a challenging week. I have several doctors appointments, which have me worried. My mother has had continuing difficulties with her health since developing C-Diff back in August in the hospital. They are doing a colonoscopy on her on Thursday morning, so we have the prep to get through on Wednesday and then her test. I pray they can figure out what is wrong so she can get some relief. I have a new specialist on Friday for a possible problem with my kidneys. It never ends. So I need to re-read my own post and learn to take the challenges and change them into growing experiences! That doesn't mean I won't ask for your prayers in the meantime though. . .
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