The sun is shining, the birds are singing and the signs of Spring are all around me. It's one of my favorite times of the year. It's time to add to my Spring wardrobe, pull out my shorts, and skirts, and get out my strappy sandals. I look down at my feet and realize my feet have been ignored for nearly six months! If it weren't for the occasional clipping to keep my toenails from pocking holes through my socks and stockings, my nails would easily resemble my dog Elmo's (curved and scratching the floor as I walk). It's time to head to my favorite nail salon for a pedicure.
I'm totally prepared for my spa experience, a good book, my ipod, chai latte tea and some salty snacks. I can't wait! As I'm walking into the salon, it's obvious to anyone looking my way that I am armed and ready for a relaxing morning at the spa.
I'm immediately greeted by the salon manager and instructed to pick out my nail color as she fills the spa tub. I pick a hot pink to go with my cheerful mood and sit in my chair. The salon manager adjusts my chair as I'm beginning to relax, and poof, she pushes the massage button on the chair and these huge massage balls begin shaking and rolling down my back. I am so startled that I jump and my book flies into the tub. Every eye in the spa is now staring at me as the manager tries to save my book, which is now soaking wet at the bottom of the tub. We decide the book has been read for the last time and it's tossed into the trash. The sweet manager hands me a magazine and informs me that my tub is ready. I slowly ease my feet into the steaming tub only to quickly pull them out because the tub is so hot it could only be used to poach eggs! The manager kindly cools the tub, and I give it another try, ummmm just right!
Finally, I can relax, chai in my hand, my favorite music gently uplifting my spirits and a fashion magazine listing the top 5 must haves for my spring wardrobe! I'm in heaven. It couldn't have been but a few minutes into my heavenly bliss when I noticed a throbbing in my feet and toes, I look down and notice my feet have turned a lovely shade of purple! Reality sinks back in and so does the dysautonomia symptoms. I pull my feet out of the tub and rest them on the edge. My pedicure lady comes and asks if there is something wrong with the water temperature, I just explain that my feet needed a break. She gives me an odd look and lets me know that my feet need a good soaking before she can start. I nod and reluctantly return my feet into the tub. After a few more agonizing minutes of soaking, my pedicure lady rescues my feet from the tub of doom. As she pulls my foot from the soaking tub her eyes pop open in surprise, and she informs me that my foot is purple! I giggle and tell her that is normal for me, she shakes her head and moves on to the pedicure.
The pedicure begins, and so does my motivation to try to relax again. I'm enjoying the skin care section of the magazine, when suddenly my feet inform me that they are under attack by the pedi lady sawing the bottom of my feet with a sander! My body begins to tense up as I try to endure this painful experience, and my pedicurist blissfully continues the sanding process. As she sands away, I have grabbed the arm rests of my chair in the same way that I do when I'm at the dentists office and I'm getting my tooth drilled. The lady in the next chair is eyeing me as if I'm crazy to not be enjoying this relaxing experience, and I start to feel like a failure at something as simple as relaxing. As I look around the salon I envy those woman resting peacefully as they are getting the full spa experience, and I chuckle to myself as I realize I am the only one tenser than a cat in a room full of rocking chairs. I then begin to give myself a pep talk to try to endure the torture for just one more minute! I'm no longer able to take the discomfort, and I pull my foot away, and the pedicurist laughs and says "does that tickle?" (ARE YOU KIDDING ME?), I frown and gently tell her that she's hurting me, so she stops and begins on my other foot. My body is just starting to relax again as she meticulously works on beautifying my other foot. Then my foot is being tortured by the sander again, and I pull my foot away. Again I try to explain that the sanding hurts the bottom of my foot, and she stops, frowns and places my foot back in the tub. She then begins working on my toes, and tells me my toenails are really soft, I again re-assure her that this is normal for me, and she continues.
It's time for the massage part of the pedicure experience. My pedi lady begins rubbing on the lotion and asks me about the bruises on my legs, and again I inform her that it's normal for me and not to worry. I'm beginning to think maybe this woman should be a doctor instead of a pedicurist, she's much more observant than my doctor is. She begins to rub in the lotion on my legs, and starts kneading my calves with her tiny fingers, and they feel as if they are being attacked by tiny paint ball pellets. The pain of the massage is more than I can handle, so I kindly ask her to please stop. I don't give her much of an explanation because there is a language barrier and I didn't think she would understand me (just so you know, my mom is German and didn't speak English when I was a child, and I totally respect those who come from other countries and try hard to learn our language, it's a challenging process and they have one language up on me, but the truth is it's still a bit difficult to communicate). By this time the manager is looking my way and begins shouting in Korean at my pedicurist. They argue back and forth for several minutes and finally the manager begins speaking to me. She is wondering what my pedicure lady is doing wrong! At this point the stress of this experience has finally come to a breaking point and I begin to laugh hysterically. Again all eyes in the salon are staring at me, and I don't care. After a few minutes I calm down, wipe away the tears of laughter rolling down my cheeks, and inform the manager of my dysautonomia and the symptoms that go with it. She finally nods in understanding, and begins translating our conversation to my pedicurist in Korean. When they are finished talking the pedicurist gives me a compassionate smile and begins painting my toenails.
I left the spa that day with hot pink nails with butterflies painted on them, and the need for a nap. Who would of thought that a trip to the spa would be so exhausting. I also learned a valuable lesson that day. I could have easily walked away from that experience deciding to never return again, but dysautonomia would have just took another fun experience away from me. I've learned to not be afraid to ask for what I need. I also need to allow for a bad first experience, so that I will have the opportunity to learn from that experience, and then know what I will need for the next time. Be strong, be persistent, and don't forget to laugh, life is too short to wallow in the negative.
Always inspired,
Michele
Friday, April 9, 2010
Tuesday, April 6, 2010
Insurance & Peace of mind...NOT!
My father use to tell me that "insurance gives a person peace of mind". Well, that was 20 years ago, and I don't believe the insurance companies are using that motto in their training sessions with their employees any more. I believe the new motto for insurance companies is "Insurance is a circus act". In my opinion insurance companies train their personnel to see how many hoops they can make a customer jump through to get the treatment he or she needs before they actually authorize treatment. I can imagine each customer service representative (CSR to save time) given a list of hoops, and after all hoops are achieved, the CSR is told to tell the customer that they didn't receive the faxed copies of hoop "X", please try again. I've also noticed that these CSR's seem fairly cheerful on the phone, but I guess I'd be happy too if I got paid to get nothing accomplished all day!
You may be wondering why I chose this topic to write about, well....yesterday was the day I gave myself to finally try to get the wheelchair my physician recommended for me 6 months ago. If you have read my past blogs you know that I have been procrastinating this task for emotional reasons, but I know having a wheelchair will improve my quality of life so I decided to push forward with it this week.
Yesterday morning I began the task. I grabbed my prescription for the wheelchair and made a call to the insurance company. I should have known there would be trouble when I heard the recording on the insurance companies intro message; "Please listen carefully, our options have recently changed, please choose from the following new options". Choosing an option is always a gamble because if you have chosen the wrong option, you have to hang up and start the process all over again. So I said a quick prayer and chose option 18; authorizations. Bingo, I chose the right option. I am then told to enter my id# and group # (which is in such fine print that I need to get a magnifying glass out to see the numbers), and then told that my communication may be recorded for quality assurance purposes, hmmmm.... After I punch in my id and group #, I say another prayer that I didn't make any mistakes, and then push the # sign. After 5 minutes of listening to obnoxious music and advertisements telling me how caring my insurance company is, a CSR comes on the line. She asks me again for my id # and group # and I begin to realize that I'm Alice and I've fallen down the rabbit hole, and Johnny Depp isn't there to meet me. I have fallen into a reality that only makes sense to the insurance company and my wonderful CSR. I'm asked to state my problem, I tell the CSR that my doctor has prescribed a wheelchair for me, and I need to know the procedures to get one. She then tells me I need to use an authorized medical supplier, and asks me for my state and area code. I wonder what information pops up when I give them my id# and group#. After she gives me a long list of cities that are 60 or more miles away, she finally comes across one that is in a neighboring city, and I take down the address and phone number. My arms and hands are now aching because holding the phone up to my ear is so painful, I decide to take a 5 minute break before I proceed any further.
Woohoo, I'm on my way, I make the phone call and get a recording, "We're sorry, the number you have just dialed is no longer in service, please blah, blah, blah.... Arggg, I call back the insurance company, and after spending 15 minutes pushing a million bazillion numbers, I'm back on the line with a CSR, a different one of course, so I tell her my story, and she gives me a web site to check. We say our goodbye's and I go on line. I'm told I need to register to get the information I need, so I follow the complicated list of info needed to become a registered member, and I am denied! I try 4 more times, and I'm told to call customer service. So I call the number, and again the animated phone service has me jumping the hoops needed to direct my call, and finally I'm given a CSR. I tell her my problem, she asks me for my id# and group # which I now have memorized. She types in the info, which she proceeds to tell me that her computer is running slow, and it may take a few minutes, chirp... chirp... chirp. Finally she is back on the line with a hmmm..., this is strange, you are not coming up, can you please hold...... CSR comes back and is wondering if I work for _____, I say yes, and she says oh, your group doesn't have access to this site, you need to go to another site to get your information. She gives me the site info, and wishes me good luck, which I know I'll be needing at this point in the game.
I go to the new site, and bingo, I'm able to log on and access the information I need. I find the only medical supplier in my area, and give them a call. I am told it is a rental company, and to bring in my prescription. I hang up the phone and realize that I need to start all over, because I do not want to rent a chair for what appears to be the rest of my life.
So I call the insurance company again, and after the may hoops I automatically jump through, I'm back on the line with a CSR (a different one than the first two). I tell her my problem, and she doesn't know what to do, and puts me on hold to ask a supervisor. I couldn't be the first person that insurance company has come across that needs a wheelchair permanently! The CSR gets back on the line and asks me what my doctor told me to do, now this was 6 months ago, and all I remember was him telling me he got one for his office at Sam's club for around $100.00, and that he would see me in 6 months. The CSR laughed, and told me that I needed to contact my doctor, because he is the one who needs to take care of it. Thank you for calling and have a nice day. I'm thinking to myself, are you sure, this is the doctor who recommended I go to Sam's club!
I look at my clock and was shocked that it said 11:55, I began this quest at 9:00. My doctor would be going to lunch in 5 minutes, and wouldn't be returning until 2:00. I would love to have a two hour lunch break! I was totally drained, and decided to wait for my next doctors visit (which is in a week), to complete this task. I am not up to jumping through a new rabbit hole in which my reality depends on a doctor who believes I can get a quality wheelchair for $100.00. I'd like to see him sit in it for 4 hours, or try pushing the wobbly wheels up a curve!
After spending hours on the phone and accomplishing nothing, I was drained and frustrate. I've learned through my experiences that things are easier when you're not alone. I called a friend who is familiar with the frustrations of the insurance companies circus hoops, and after ranting and raving to her I felt so much better. Even the yucky things in life are better when shared with a friend, thanks Von!
Back to my reality, Dysautonomia, my new normal.
Always inspired,
Michele
You may be wondering why I chose this topic to write about, well....yesterday was the day I gave myself to finally try to get the wheelchair my physician recommended for me 6 months ago. If you have read my past blogs you know that I have been procrastinating this task for emotional reasons, but I know having a wheelchair will improve my quality of life so I decided to push forward with it this week.
Yesterday morning I began the task. I grabbed my prescription for the wheelchair and made a call to the insurance company. I should have known there would be trouble when I heard the recording on the insurance companies intro message; "Please listen carefully, our options have recently changed, please choose from the following new options". Choosing an option is always a gamble because if you have chosen the wrong option, you have to hang up and start the process all over again. So I said a quick prayer and chose option 18; authorizations. Bingo, I chose the right option. I am then told to enter my id# and group # (which is in such fine print that I need to get a magnifying glass out to see the numbers), and then told that my communication may be recorded for quality assurance purposes, hmmmm.... After I punch in my id and group #, I say another prayer that I didn't make any mistakes, and then push the # sign. After 5 minutes of listening to obnoxious music and advertisements telling me how caring my insurance company is, a CSR comes on the line. She asks me again for my id # and group # and I begin to realize that I'm Alice and I've fallen down the rabbit hole, and Johnny Depp isn't there to meet me. I have fallen into a reality that only makes sense to the insurance company and my wonderful CSR. I'm asked to state my problem, I tell the CSR that my doctor has prescribed a wheelchair for me, and I need to know the procedures to get one. She then tells me I need to use an authorized medical supplier, and asks me for my state and area code. I wonder what information pops up when I give them my id# and group#. After she gives me a long list of cities that are 60 or more miles away, she finally comes across one that is in a neighboring city, and I take down the address and phone number. My arms and hands are now aching because holding the phone up to my ear is so painful, I decide to take a 5 minute break before I proceed any further.
Woohoo, I'm on my way, I make the phone call and get a recording, "We're sorry, the number you have just dialed is no longer in service, please blah, blah, blah.... Arggg, I call back the insurance company, and after spending 15 minutes pushing a million bazillion numbers, I'm back on the line with a CSR, a different one of course, so I tell her my story, and she gives me a web site to check. We say our goodbye's and I go on line. I'm told I need to register to get the information I need, so I follow the complicated list of info needed to become a registered member, and I am denied! I try 4 more times, and I'm told to call customer service. So I call the number, and again the animated phone service has me jumping the hoops needed to direct my call, and finally I'm given a CSR. I tell her my problem, she asks me for my id# and group # which I now have memorized. She types in the info, which she proceeds to tell me that her computer is running slow, and it may take a few minutes, chirp... chirp... chirp. Finally she is back on the line with a hmmm..., this is strange, you are not coming up, can you please hold...... CSR comes back and is wondering if I work for _____, I say yes, and she says oh, your group doesn't have access to this site, you need to go to another site to get your information. She gives me the site info, and wishes me good luck, which I know I'll be needing at this point in the game.
I go to the new site, and bingo, I'm able to log on and access the information I need. I find the only medical supplier in my area, and give them a call. I am told it is a rental company, and to bring in my prescription. I hang up the phone and realize that I need to start all over, because I do not want to rent a chair for what appears to be the rest of my life.
So I call the insurance company again, and after the may hoops I automatically jump through, I'm back on the line with a CSR (a different one than the first two). I tell her my problem, and she doesn't know what to do, and puts me on hold to ask a supervisor. I couldn't be the first person that insurance company has come across that needs a wheelchair permanently! The CSR gets back on the line and asks me what my doctor told me to do, now this was 6 months ago, and all I remember was him telling me he got one for his office at Sam's club for around $100.00, and that he would see me in 6 months. The CSR laughed, and told me that I needed to contact my doctor, because he is the one who needs to take care of it. Thank you for calling and have a nice day. I'm thinking to myself, are you sure, this is the doctor who recommended I go to Sam's club!
I look at my clock and was shocked that it said 11:55, I began this quest at 9:00. My doctor would be going to lunch in 5 minutes, and wouldn't be returning until 2:00. I would love to have a two hour lunch break! I was totally drained, and decided to wait for my next doctors visit (which is in a week), to complete this task. I am not up to jumping through a new rabbit hole in which my reality depends on a doctor who believes I can get a quality wheelchair for $100.00. I'd like to see him sit in it for 4 hours, or try pushing the wobbly wheels up a curve!
After spending hours on the phone and accomplishing nothing, I was drained and frustrate. I've learned through my experiences that things are easier when you're not alone. I called a friend who is familiar with the frustrations of the insurance companies circus hoops, and after ranting and raving to her I felt so much better. Even the yucky things in life are better when shared with a friend, thanks Von!
Back to my reality, Dysautonomia, my new normal.
Always inspired,
Michele
Sunday, March 28, 2010
Pamper yourself
Crash and burn
Been hit by a truck
Been put through the blender
Been put through the spin cycle
These are descriptions people use when their bodies hurt from head to toe, and how I usually feel from dawn till dusk
If I could pick a storybook character that I most resemble, it would be the princess in "Princess and the Pea". Being sensitive to the touch is not something new, I've experienced it as long as I can remember. I have had the uncanny ability to feel a wrinkle on my bedsheets or the seams in my cloths all my life. My former husband nicknamed me "Princess and the pea" very shortly after we were married.
Since my dysautonomia diagnosis, my sensitivity to touch has multiplied a hundred fold, and in the past month it has become even more pronounced. I wake up in the morning feeling like I've been hit by a truck, but I push through work and find the ability to mentally ignore the pain until I get home . I often look at different parts of my body for bruises that aren't there.
I was feeling pretty beat up one day last week, and headed for my bath, I went to grab my favorite washcloth, the one that is so soft it feels like a baby chick, and noticed it wasn't as soft as before. The disappointment surprised me, so I began to mull it over while I was soaking in the tub, and realized that I get very little positive physical experiences any more. Dysautonomiahas unfortunately stolen many things that give me pleasure, working out, shopping, gardening, singing, even cleaning makes me smile. Feeling the softness of that washcloth feels wonderful and makes me smile. I realized then that I needed to start filling my life with those small things that make me feel good. I began making a list.
1. Softy washcloths
2. Softy socks
3. Vanilla scented bath salts
4. Mango scented body butter
5. The smell of coffee brewing
6. Pistachio gelato
7. Dark chocolate dipped pretzel
8. The sound of rain
9.The sound of my water fountain
10. My garden when the birds and insects are weaving in and out of the flowers
11. The feeling of my dog Elmo curled up next to me
These are all things that are easy to include in my life every day. But for some reason I always had an excuse for not getting what I need. Family needs or energy spent to get those thing has hindered me every time. I am realizing that those things are my rainbow after the storm. I deserve the little things that make life more tolerable.
This weekend I found a way to get everything on my list. I explained to my children why I was sending them out on my own personal treasure hunt, and they responded with huge smiles on their faces. We all deserve the little things that make life enjoyable, God didn't create cotton or scents by accident, they were designed to enjoy. Even if you don't have an illness, it's important to fill your life with the things that make you smile, so you can be more joyful around those you love. Don't forget to pamper yourself, you and those around you deserve it.
Always inspired,
Michele
Been hit by a truck
Been put through the blender
Been put through the spin cycle
These are descriptions people use when their bodies hurt from head to toe, and how I usually feel from dawn till dusk
If I could pick a storybook character that I most resemble, it would be the princess in "Princess and the Pea". Being sensitive to the touch is not something new, I've experienced it as long as I can remember. I have had the uncanny ability to feel a wrinkle on my bedsheets or the seams in my cloths all my life. My former husband nicknamed me "Princess and the pea" very shortly after we were married.
Since my dysautonomia diagnosis, my sensitivity to touch has multiplied a hundred fold, and in the past month it has become even more pronounced. I wake up in the morning feeling like I've been hit by a truck, but I push through work and find the ability to mentally ignore the pain until I get home . I often look at different parts of my body for bruises that aren't there.
I was feeling pretty beat up one day last week, and headed for my bath, I went to grab my favorite washcloth, the one that is so soft it feels like a baby chick, and noticed it wasn't as soft as before. The disappointment surprised me, so I began to mull it over while I was soaking in the tub, and realized that I get very little positive physical experiences any more. Dysautonomiahas unfortunately stolen many things that give me pleasure, working out, shopping, gardening, singing, even cleaning makes me smile. Feeling the softness of that washcloth feels wonderful and makes me smile. I realized then that I needed to start filling my life with those small things that make me feel good. I began making a list.
1. Softy washcloths
2. Softy socks
3. Vanilla scented bath salts
4. Mango scented body butter
5. The smell of coffee brewing
6. Pistachio gelato
7. Dark chocolate dipped pretzel
8. The sound of rain
9.The sound of my water fountain
10. My garden when the birds and insects are weaving in and out of the flowers
11. The feeling of my dog Elmo curled up next to me
These are all things that are easy to include in my life every day. But for some reason I always had an excuse for not getting what I need. Family needs or energy spent to get those thing has hindered me every time. I am realizing that those things are my rainbow after the storm. I deserve the little things that make life more tolerable.
This weekend I found a way to get everything on my list. I explained to my children why I was sending them out on my own personal treasure hunt, and they responded with huge smiles on their faces. We all deserve the little things that make life enjoyable, God didn't create cotton or scents by accident, they were designed to enjoy. Even if you don't have an illness, it's important to fill your life with the things that make you smile, so you can be more joyful around those you love. Don't forget to pamper yourself, you and those around you deserve it.
Always inspired,
Michele
Saturday, March 20, 2010
Friendship and Chronic Illness
Having a disease like dysautonomia can make it easy to be angry and play the blame game. This disease has taken so much away from me, and if you have read my blogs, I surely don't need to list them. When I first thought about writing a blog on friendship a month ago, it would have been other directed. I would have cast blame on friends no longer in my life (or barely there). I would have totally blamed this disease, and never cast the blame on the one most responsible, MYSELF! But I can't lay total blame on dysautonomia or my friends for my isolation. Isolation is a choice, a choice only I can be held responsible for.
This disease can definitely rain on your friendship parade. Working makes me too pooped to do anything else. Weekends for me are spent re cooping from the previous week and building up my strength to go to work the next week. Phone calls are difficult, holding the phone to my ear for more than five minutes is painful (and I don't believe in speaker phone, it's a privacy thing). It's hard to make future plans when I don't know how I'm going to feel at any given time. The meds I'm on can make me a bit sullen and uncommunicative. Then there is the fact that when I am out with friends, I often have to cut it short because I am too tired to continue. There's also the tricky business of having friends over, and telling them they need to leave, because I need to go to bed (what kind of friend is that?).Then there's that voice in my head that whispers little lies such as "you've become quite boring since you got sick" or "who wants to hang out with a couch potato" or "if you call and ask them over, I'm sure they have better things to do than sit with you!" Now some of these things may be true, but believing these lies only fuels the fire of self doubt, and makes that deep hole of isolation even more difficult to climb out of.
To be totally honest, friendship involves some work. It involves time, commitment and communication. And all of these take some energy on my part, and energy is the one thing of which I have so little of, and it is this lack of energy that often derails the friendship train. For me it's easy to allow lethargy to take over, to remain in isolation, which makes it easier to forget what it's like to experience special moments with friends.
It would be very easy for me to submit to a life of isolation, to accept it as my new normal, like everything else I've learned to accept since my dysautonomia diagnosis. But thankfully there is another voice that speaks louder than the self doubt. A strong voice of determination for what I really need. I wasn't placed here on this earth to be in isolation. I'm meant to be connected with others. I'm at my weakest when I'm alone and vulnerable, I'm stronger in unity with others. It's not just for my sanity, but for theirs as well. My choice to isolate myself hurts them as well, it robs them of the purpose I was placed in their lives for, to be their friend.
What I'm learning from this, is that my true friends will sit with the couch potato, they won't baulk when I have to leave early, and they will only want what's best for me, if I send them home early. The fair weather friends will do exactly as the voices of doubt said they would, and those are not my friends. In order to have friends I need to be one, and joyfully invest the energy to be with them, and reap the rewards of my small investment.
Inspired,
Michele
P.S. I'm thankful for this outlet to express the areas in my life I'm struggling with. It often forces me to seek solutions to these problems that I wasn't ready to deal with until I decided to blog them. Thank you for your continued support and encouragement, without it, I would probably be floundering in self pity and doubt.
This disease can definitely rain on your friendship parade. Working makes me too pooped to do anything else. Weekends for me are spent re cooping from the previous week and building up my strength to go to work the next week. Phone calls are difficult, holding the phone to my ear for more than five minutes is painful (and I don't believe in speaker phone, it's a privacy thing). It's hard to make future plans when I don't know how I'm going to feel at any given time. The meds I'm on can make me a bit sullen and uncommunicative. Then there is the fact that when I am out with friends, I often have to cut it short because I am too tired to continue. There's also the tricky business of having friends over, and telling them they need to leave, because I need to go to bed (what kind of friend is that?).Then there's that voice in my head that whispers little lies such as "you've become quite boring since you got sick" or "who wants to hang out with a couch potato" or "if you call and ask them over, I'm sure they have better things to do than sit with you!" Now some of these things may be true, but believing these lies only fuels the fire of self doubt, and makes that deep hole of isolation even more difficult to climb out of.
To be totally honest, friendship involves some work. It involves time, commitment and communication. And all of these take some energy on my part, and energy is the one thing of which I have so little of, and it is this lack of energy that often derails the friendship train. For me it's easy to allow lethargy to take over, to remain in isolation, which makes it easier to forget what it's like to experience special moments with friends.
It would be very easy for me to submit to a life of isolation, to accept it as my new normal, like everything else I've learned to accept since my dysautonomia diagnosis. But thankfully there is another voice that speaks louder than the self doubt. A strong voice of determination for what I really need. I wasn't placed here on this earth to be in isolation. I'm meant to be connected with others. I'm at my weakest when I'm alone and vulnerable, I'm stronger in unity with others. It's not just for my sanity, but for theirs as well. My choice to isolate myself hurts them as well, it robs them of the purpose I was placed in their lives for, to be their friend.
What I'm learning from this, is that my true friends will sit with the couch potato, they won't baulk when I have to leave early, and they will only want what's best for me, if I send them home early. The fair weather friends will do exactly as the voices of doubt said they would, and those are not my friends. In order to have friends I need to be one, and joyfully invest the energy to be with them, and reap the rewards of my small investment.
Inspired,
Michele
P.S. I'm thankful for this outlet to express the areas in my life I'm struggling with. It often forces me to seek solutions to these problems that I wasn't ready to deal with until I decided to blog them. Thank you for your continued support and encouragement, without it, I would probably be floundering in self pity and doubt.
Friday, March 12, 2010
Chronic Pain Drain
The reality of my chronic pain came to the surface this week when I snapped at my 23 year old son over the laundry. If you know anything about me, I'm a pretty easy going gal. I don't lose my temper, I think before I speak, and when I do speak it's pretty well thought out. There is no purpose or sane reason behind raising my voice over something as simple as the laundry. After I left the wrath of Mount St. Helen's spewed all over my now shocked and peeved son, I had to evaluate what could have possibly brought me to that uncharacteristic snapping point. I began to make a list.
1. My wet laundry is sitting on the floor, and my sons laundry is bouncing happily in the dryer.
2. Every task is twice as hard as it use to be, and I need to finish the laundry while I still have some strength left in me.
3. Nausiated (most of the day, every day)
4. Dizzy (off and on all day)
5. Tired (always)
6. Short of breath
7. Tachycardia
8. My body hurts all the time, and it's zapping every ounce of energy I have.
In dealing with my more severe symptoms of dysautonomia, I had ignored the fact that I am in constant pain all the time. If I could discribe how I feel, I would have to say it's how how your body feels when you have the flu. Add the feeling of being tense (the calgon, take me away, kind of tense) in every muscle in your body. The other day a student wanted to get my attention and began poking my leg with her tiny finger, it felt like I was being poked by a cattle prod. Well, being in constant pain and fatigue is sooner or later going to creep into your personal life. And for me, my recent blow up on my son, was a wake up call to come up with a plan for dealing with this pain.
1. I needed to check with my doctor to see what can be done for the pain. In my case, I also have arthritis, so the doctor wants to attack the joint pain with anti-inflammitories. If that doesn't work, pain pills will be his next plan, which I will then look for another opinion, masking the pain doesn't cure the underlying issue in my opinion.
2. Listen to my body when it is in pain, and give it the much needed rest it's crying out for.
3. When I am in pain, delegate tasks to those with more healthier bodies in my household. I hate asking for help, but I hate hurting my family members hearts with sharp words caused by pain that could have been avoided if I just asked for some help in the first place.
4. When I feel like I'm ready to lose my temper, I need to take a moment alone to reflect on what's causing the anger. This advice is good for everyone, In my recovery group (I have an eating disorder), when we are ready to fall into unhealthy habits we do a H.E.A.R.T. check, and ask ourselves these questions. Am I Hurting? Am I Exhausted? Am I Angry? Am I Resentful? Am I Tense? If the answer is yes to any of those questions, then you need to ask why, and work through the reason. This works for physical and emotional pain.
5. If I lose my temper, I need to work through the H. E.A.R.T. check and discuss it with the person I just hurt.
Hopefully if I work through this plan, my family will experience a much more pleasant mom, and I will reap the benefits of working through the symptoms that effet my life daily.
When living with a disease like dysautonomia that has many symptoms, I have a tendency to focus on the symptom that has the greatest physical threat to my body. Unfortuanately in doing so I usually ignore other symptoms that may be threatening as well. I am now keeping a simple journal with my symptoms and how they effect my lifestyle. I will then have something to bring in to doctors visits that will hopefully give the doctor a better idea of everythng I'm experiencing and how to best treat my disease and its symptoms. And I will also have a better understanding of how each symptom effects different parts of my life.
Always inspired,
Michele
1. My wet laundry is sitting on the floor, and my sons laundry is bouncing happily in the dryer.
2. Every task is twice as hard as it use to be, and I need to finish the laundry while I still have some strength left in me.
3. Nausiated (most of the day, every day)
4. Dizzy (off and on all day)
5. Tired (always)
6. Short of breath
7. Tachycardia
8. My body hurts all the time, and it's zapping every ounce of energy I have.
In dealing with my more severe symptoms of dysautonomia, I had ignored the fact that I am in constant pain all the time. If I could discribe how I feel, I would have to say it's how how your body feels when you have the flu. Add the feeling of being tense (the calgon, take me away, kind of tense) in every muscle in your body. The other day a student wanted to get my attention and began poking my leg with her tiny finger, it felt like I was being poked by a cattle prod. Well, being in constant pain and fatigue is sooner or later going to creep into your personal life. And for me, my recent blow up on my son, was a wake up call to come up with a plan for dealing with this pain.
1. I needed to check with my doctor to see what can be done for the pain. In my case, I also have arthritis, so the doctor wants to attack the joint pain with anti-inflammitories. If that doesn't work, pain pills will be his next plan, which I will then look for another opinion, masking the pain doesn't cure the underlying issue in my opinion.
2. Listen to my body when it is in pain, and give it the much needed rest it's crying out for.
3. When I am in pain, delegate tasks to those with more healthier bodies in my household. I hate asking for help, but I hate hurting my family members hearts with sharp words caused by pain that could have been avoided if I just asked for some help in the first place.
4. When I feel like I'm ready to lose my temper, I need to take a moment alone to reflect on what's causing the anger. This advice is good for everyone, In my recovery group (I have an eating disorder), when we are ready to fall into unhealthy habits we do a H.E.A.R.T. check, and ask ourselves these questions. Am I Hurting? Am I Exhausted? Am I Angry? Am I Resentful? Am I Tense? If the answer is yes to any of those questions, then you need to ask why, and work through the reason. This works for physical and emotional pain.
5. If I lose my temper, I need to work through the H. E.A.R.T. check and discuss it with the person I just hurt.
Hopefully if I work through this plan, my family will experience a much more pleasant mom, and I will reap the benefits of working through the symptoms that effet my life daily.
When living with a disease like dysautonomia that has many symptoms, I have a tendency to focus on the symptom that has the greatest physical threat to my body. Unfortuanately in doing so I usually ignore other symptoms that may be threatening as well. I am now keeping a simple journal with my symptoms and how they effect my lifestyle. I will then have something to bring in to doctors visits that will hopefully give the doctor a better idea of everythng I'm experiencing and how to best treat my disease and its symptoms. And I will also have a better understanding of how each symptom effects different parts of my life.
Always inspired,
Michele
Monday, March 1, 2010
e doesn't=mc2, e=mom of two
I'm not Michele the science gal, but I do know that my body does not follow the laws of energy produced, nor does my body follow the laws of gravity. If Albert Einstein or Isaac Newton were alive today I'm sure I'd be in deep doo-doo for questioning their historic theories. But they're not, and its MY blog, and I can say whatever I want. My body stopped following the laws of gravity two years ago, and because my body works oober hard defying the laws of energy just to pump blood to my head, any laws on energy and mass no longer pertain to me.
About a year ago I read a great blog by someone with Lupus, called the spoon theory (I highly recommend it), which explains the difference in the amount of energy it takes for someone with an illness similar to mine, compared to the average person. I have my own comparison, I've named it "young mom of two". I figure most people know what it's like to carry a crying baby for a long period of time, and if you haven't had that experience, then pretend you're carrying two heavy bags of potatoes and your mate is yelling at you non-stop for 45 minutes!
Imagine you're a young mom of two, one child is 9 months and 22 pounds, the second child is 3 years old and weighs 34 pounds. Now imagine you need to get ready for work, and dear husband has left the childcare task to you. You have a presentation to give to the big wigs in your company. You have 45 minutes to get yourself and your precious children ready. So you're getting ready to put make-up on when the 9 month old gets fussy and begins to cry. You pick her up and rest her on your hip and continue to try to apply your make-up, while trying to rock and sooth her. The 9 month old continues screaming and has spit up on your new suit, your arm is aching. And now your three year old is whining for attention, you are now tense and frazzled. The 3 year old begins to scream, so you run for the baby back pack, and slip the 9 month old in, and grab the 3 year old and rest him on the hip that previously was taken by the 9 month old. You try to rock, sway and hush the screaming children, but nothing seems to calm them down. You have finally managed to apply a meager amount of make-up, your swept up hair style is falling in your face, your exhausted and ready to cry. You realize you still need to blow up a dozen balloons for the presentation at work. You're still holding both whining children, and you begin blowing up the balloons, first one is done, and you begin to feel like you may make it out the door on time. After about 5 balloons, you are out of breath, your arms are aching from holding the two children, and you continue to blow! By the tenth balloon, you are dizzy and about to pass out. You complete the last balloon, the world is spinning, but you know you have to get the kids dressed. You've dressed the children who are not cooperative, and head for the door. You realize you haven't had a thing for breakfast, so you run to the fridge for a quick swig from the milk carton (I know it's gross, but desperate times need desperate measures). After about the second swig you realize the milk has gone sour, but it's too late you've already swallowed (ewwww). As you grab the kids to leave, you're arms and body are fatigued from carrying the children, you are dizzy from blowing up all those balloons, and ready to barf from the sour milk. You contemplate calling it a day, but you catch your breath, and head out the door. It turns out to be a normal day at work. Your presentation went great, and they loved the balloons!
Having dysautonomia, makes my morning routine quite similar to "young mom of two". Just getting out of bed in the morning sometimes feels like I have blown up a dozen balloons. Applying make-up often feels like carrying two unhappy babies for a long duration. The nausea, is a daily occurrence that I still haven't gotten use to it. The only difference between me and "young mom of two", is that one unexpected task or running a few minutes late could send me to bed for the day. It still amazes me that a simple task like putting on make-up that used no energy for me before dysautonomia, now with dysautonomia the amount of energy I use is mind blowing. Miranda (a fellow dysautonomia friend and mom of two young girls) I don't know how you do it!
Just finished flipping pancakes, I think I need a nap!
Always inspired,
Michele
About a year ago I read a great blog by someone with Lupus, called the spoon theory (I highly recommend it), which explains the difference in the amount of energy it takes for someone with an illness similar to mine, compared to the average person. I have my own comparison, I've named it "young mom of two". I figure most people know what it's like to carry a crying baby for a long period of time, and if you haven't had that experience, then pretend you're carrying two heavy bags of potatoes and your mate is yelling at you non-stop for 45 minutes!
Imagine you're a young mom of two, one child is 9 months and 22 pounds, the second child is 3 years old and weighs 34 pounds. Now imagine you need to get ready for work, and dear husband has left the childcare task to you. You have a presentation to give to the big wigs in your company. You have 45 minutes to get yourself and your precious children ready. So you're getting ready to put make-up on when the 9 month old gets fussy and begins to cry. You pick her up and rest her on your hip and continue to try to apply your make-up, while trying to rock and sooth her. The 9 month old continues screaming and has spit up on your new suit, your arm is aching. And now your three year old is whining for attention, you are now tense and frazzled. The 3 year old begins to scream, so you run for the baby back pack, and slip the 9 month old in, and grab the 3 year old and rest him on the hip that previously was taken by the 9 month old. You try to rock, sway and hush the screaming children, but nothing seems to calm them down. You have finally managed to apply a meager amount of make-up, your swept up hair style is falling in your face, your exhausted and ready to cry. You realize you still need to blow up a dozen balloons for the presentation at work. You're still holding both whining children, and you begin blowing up the balloons, first one is done, and you begin to feel like you may make it out the door on time. After about 5 balloons, you are out of breath, your arms are aching from holding the two children, and you continue to blow! By the tenth balloon, you are dizzy and about to pass out. You complete the last balloon, the world is spinning, but you know you have to get the kids dressed. You've dressed the children who are not cooperative, and head for the door. You realize you haven't had a thing for breakfast, so you run to the fridge for a quick swig from the milk carton (I know it's gross, but desperate times need desperate measures). After about the second swig you realize the milk has gone sour, but it's too late you've already swallowed (ewwww). As you grab the kids to leave, you're arms and body are fatigued from carrying the children, you are dizzy from blowing up all those balloons, and ready to barf from the sour milk. You contemplate calling it a day, but you catch your breath, and head out the door. It turns out to be a normal day at work. Your presentation went great, and they loved the balloons!
Having dysautonomia, makes my morning routine quite similar to "young mom of two". Just getting out of bed in the morning sometimes feels like I have blown up a dozen balloons. Applying make-up often feels like carrying two unhappy babies for a long duration. The nausea, is a daily occurrence that I still haven't gotten use to it. The only difference between me and "young mom of two", is that one unexpected task or running a few minutes late could send me to bed for the day. It still amazes me that a simple task like putting on make-up that used no energy for me before dysautonomia, now with dysautonomia the amount of energy I use is mind blowing. Miranda (a fellow dysautonomia friend and mom of two young girls) I don't know how you do it!
Just finished flipping pancakes, I think I need a nap!
Always inspired,
Michele
Saturday, February 27, 2010
Pray Without Ceasing
Being a Christian with dysautonomia gives me the opportunity to look at my disease as a way to see how God wants me to learn from the experiences of this disease. To be honest, there are times when the symptoms of this disease make that a bit difficult (I'm sure you've seen some of the frustration in these blogs). I do have to say, that I NEVER experience brainfog while praying. Those names and details are always quite clear. I sometimes wonder if I was always in prayer, that maybe I'll never experience brainfog again! I can just imagine how that might sound as I'm teaching, "Oh Lord help my students grasp the concept of addition, help them to remember that if they add two items and three items they might want to use their fingers or objects to make that concept clearer." I think I'll have to give that idea a little more thought, and conversations with people might need a little more creative thinking as well.
Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.
The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.
Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!
Always inspired,
Michele
Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.
The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.
Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!
Always inspired,
Michele
Subscribe to:
Posts (Atom)
