I haven't blogged in a while because I ... I actually have no idea why. I have been going through the motions of life. I have had some highs - my health has not had any significant new 'bad' things nor have my current 'bad' things decided to act up much. Yet. (There is always that possibility.)
I have also had some lows - a college friend died of leukemia (that was horribly sad) and I have another friend currently dying of breast and stomach cancer. So emotionally I have been a wreck but I think I have been hiding that part. But I am getting it under control. A big step is getting to my meds therapist next week to talk about options. Did you know that the more chronic medical issues you have you may need more emotional care? (I am not a professional but it is my personal opinion that your emotional you is just as important as your physical you.)
It is also a busy time of year for me. I have no income but I do knit and weave and sell stuff at craft shows from late October to mid December in an effort to buy more yarn. And to get out of the house and see the world.
But it is a struggle. I am working my way through it as usual.
Wednesday, November 28, 2018
Sunday, September 16, 2018
Sometimes I Ignore My Health Issues
I just spent a few days ignoring my health issues. I had a lot of fun. I know am recovering. I didn't do anything stupid - like drive a long distance, climb a mountain, or even go to the mall. I only drove probably less than 1 mile (looking for coffee one morning). I walked around a small city.
Okay, what I did do:
Okay, what I did do:
- I walked 10,000 steps one day.
- I rode on a boat.
- I rode on a bus tour (to breweries) which means I drank beer during the day time.
- I walked on the beach four days in a row - some days for as much as an hour at a time (I'm addicted to beach walking).
- I went out for two meals a day - which means I didn't eat the best.
I am exhausted as a result. I will spend today mostly in bed so I can rest. Every day I probably did too much every day. We overslept on the one day we needed to get up in time to catch the bus because I was so tired.
Being mature, I am also ignoring all current potential medical issues because I just don't feel like dealing with them - that is my biggest coping tactic. In this case, ignorance is bliss.
Wednesday, September 5, 2018
Changes with Chronic Illness
Yesterday I read an article in the Boston Globe about how young adults with a chronic illness who go off to college, now have to learn to cope with their ailment with out parental support. I read it with a bit of cyniscism (okay I can be a bit of a cynic these days). Horrors to Murgatroyd, their mommies and daddies aren't there to make sure they take their pills/check their blood sugar/go to the doctor without a helicopter parent. Okay, I am a real cynic.
Cynic or not, I do get the point. If you develop a chronic illness as a child, your parents help cope and plan how to treat the ailment. You are cushioned from the realities of being 'sick' until you reach adulthood.
But as an adult, your world is turned upside down with your diagnosis. Here's an example. I hate needles. I really hate needles. I can't look when there is a needle near me. I can't watch TV ads or news reports on the importance of getting a flu shot. Now I have the joy of getting shots twice a week. (My husband has to do them and I close my eyes.) I also need blood work every eight weeks for my RA treatment (checking for liver damage from RA meds). And I need blood work a few times a year for my (lack of) thyroid. I really hate needles.
This to me can be just as distressing to have needles stuck in me and are an uncomfortable regular reminder about my health issues. My husband is nice to me about it. He tries to make a joke about giving me shots.
Adults don't have the luxury of someone to hold their hand through all their medical diagnoses so they have to learn to cope on their own. Honestly, I think that young adults who have been coping with an ailment since childhood are probably in pretty good shape to manage their health because they have always been that way - they don't know how to handle a healthy body because their unhealthy body is their 'normal'.
I say let the college students have a chance to stand on their own two feet before swooping in and double checking on them. They need to learn to take care of themselves as any adult does.
Cynic or not, I do get the point. If you develop a chronic illness as a child, your parents help cope and plan how to treat the ailment. You are cushioned from the realities of being 'sick' until you reach adulthood.
But as an adult, your world is turned upside down with your diagnosis. Here's an example. I hate needles. I really hate needles. I can't look when there is a needle near me. I can't watch TV ads or news reports on the importance of getting a flu shot. Now I have the joy of getting shots twice a week. (My husband has to do them and I close my eyes.) I also need blood work every eight weeks for my RA treatment (checking for liver damage from RA meds). And I need blood work a few times a year for my (lack of) thyroid. I really hate needles.
This to me can be just as distressing to have needles stuck in me and are an uncomfortable regular reminder about my health issues. My husband is nice to me about it. He tries to make a joke about giving me shots.
Adults don't have the luxury of someone to hold their hand through all their medical diagnoses so they have to learn to cope on their own. Honestly, I think that young adults who have been coping with an ailment since childhood are probably in pretty good shape to manage their health because they have always been that way - they don't know how to handle a healthy body because their unhealthy body is their 'normal'.
I say let the college students have a chance to stand on their own two feet before swooping in and double checking on them. They need to learn to take care of themselves as any adult does.
Monday, August 27, 2018
A Victim of My Own Stupidity
We took a two week vacation earlier this summer. As a person with a few ailments, I travel with my own personal pharmacy. This requires some planning ahead and balancing insurance rules (meaning you can't get extra ahead of time) and my medical needs.
Before we left I made sure I filled my daily prescription boxes with two weeks worth of meds. I noted a couple that needed refills right when we got back. Most importantly, my prescription pain patches needed a new prescription from my doctor. I made a little note on my calendar for a couple days before our return so that I could get the prescription rolling before we arrived home. This prescription comes from regular mail order (as opposed to specialty mail order) and I need to allow a good ten days from when I ask my doctor until the prescription shows up. These pain patches are a vital part of my medications because they allow me to live at a substantially lower level of pain and do not require me to chase my pain with pills (that I would never remember to take). Memory is not one of my strong suits these days.
I made a little oops. I looked at the reminder on my calendar when it popped up and said to myself 'I don't want to think about that yet' and told myself to remember it when we first got back.... That was so smart.
On Wednesday or Thursday a full five days after we returned, I put on a new weekly pain patch and realized I didn't have any more (crap) and that I needed to get that new prescription (double crap). This is a SEVEN day pain patch. Not a seven plus ten or so day pain patch. I then realized I needed a whole bunch of refills but less urgently.
Next project - get all my precriptions ordered. I get my prescriptions from three sources: local pharmacy, mail order pharmacy, and specialty pharmacy. I put in my orders online for four different doctors on my hospitals app. I thought I noted on each one where they needed to come from.
Then I get a notice from my local pharmacy saying a prescription was delayed. I ignored it for a couple of days. A day or two later I checked and found my 7 day pain patch which needs to come from mail order was ready at the local pharmacy for the low price of $83, instead of the mail order price of $15.
I called back my doctor's office and asked for a corrected prescription from my doctor to go to the mail order pharmacy. That was on a Thursday (over a week after I had put on my last 7 day pain patch.
On Friday I got an email saying the pharmacy had received my prescription and would process it. The following Tuesday I get a message that the pharmacy had a question for my doctor on the prescription and had not heard back from him. I contacted my doctor's office again. Then I heard back from my doctor on Thursday that said they had spoken with my pharmacy and they would mail it out that day (liar, liar, pants on fire).
Saturday AM, I got a message with the USPS tracking number for my prescription shipment. No tracking info yet. Sunday, I found that it was in Philadelphia but on its way to its destination. Monday morning, it had reached Massachusetts but no more information. Finally it showed up in my mail box today. I have been home from vacation for 16 days which means I have been on my 7 day pain patch for a paltry 11 days.
Yes, I have been a bit 'uncomfortable' for the past few days - its been hard to get comfortable or sleep. Yes, I could have requested the new prescription while I was on vacation and put it in as a separate request so it didn't end up at the wrong pharmacy.
Yes, I could have checked my email and saw which prescription was delayed at my local pharmacy and I would have caught the problem earlier.
Yes, I could have checked my email and realized that the mail order pharmacy was waiting on my doctor.
So, yes, I was a victim of my own stupidity. But now I have my new pain patch on and am feeling much better.
Before we left I made sure I filled my daily prescription boxes with two weeks worth of meds. I noted a couple that needed refills right when we got back. Most importantly, my prescription pain patches needed a new prescription from my doctor. I made a little note on my calendar for a couple days before our return so that I could get the prescription rolling before we arrived home. This prescription comes from regular mail order (as opposed to specialty mail order) and I need to allow a good ten days from when I ask my doctor until the prescription shows up. These pain patches are a vital part of my medications because they allow me to live at a substantially lower level of pain and do not require me to chase my pain with pills (that I would never remember to take). Memory is not one of my strong suits these days.
I made a little oops. I looked at the reminder on my calendar when it popped up and said to myself 'I don't want to think about that yet' and told myself to remember it when we first got back.... That was so smart.
On Wednesday or Thursday a full five days after we returned, I put on a new weekly pain patch and realized I didn't have any more (crap) and that I needed to get that new prescription (double crap). This is a SEVEN day pain patch. Not a seven plus ten or so day pain patch. I then realized I needed a whole bunch of refills but less urgently.
Next project - get all my precriptions ordered. I get my prescriptions from three sources: local pharmacy, mail order pharmacy, and specialty pharmacy. I put in my orders online for four different doctors on my hospitals app. I thought I noted on each one where they needed to come from.
Then I get a notice from my local pharmacy saying a prescription was delayed. I ignored it for a couple of days. A day or two later I checked and found my 7 day pain patch which needs to come from mail order was ready at the local pharmacy for the low price of $83, instead of the mail order price of $15.
I called back my doctor's office and asked for a corrected prescription from my doctor to go to the mail order pharmacy. That was on a Thursday (over a week after I had put on my last 7 day pain patch.
On Friday I got an email saying the pharmacy had received my prescription and would process it. The following Tuesday I get a message that the pharmacy had a question for my doctor on the prescription and had not heard back from him. I contacted my doctor's office again. Then I heard back from my doctor on Thursday that said they had spoken with my pharmacy and they would mail it out that day (liar, liar, pants on fire).
Saturday AM, I got a message with the USPS tracking number for my prescription shipment. No tracking info yet. Sunday, I found that it was in Philadelphia but on its way to its destination. Monday morning, it had reached Massachusetts but no more information. Finally it showed up in my mail box today. I have been home from vacation for 16 days which means I have been on my 7 day pain patch for a paltry 11 days.
Yes, I have been a bit 'uncomfortable' for the past few days - its been hard to get comfortable or sleep. Yes, I could have requested the new prescription while I was on vacation and put it in as a separate request so it didn't end up at the wrong pharmacy.
Yes, I could have checked my email and saw which prescription was delayed at my local pharmacy and I would have caught the problem earlier.
Yes, I could have checked my email and realized that the mail order pharmacy was waiting on my doctor.
So, yes, I was a victim of my own stupidity. But now I have my new pain patch on and am feeling much better.
Saturday, August 25, 2018
It Might Have Been A Mistake
My husband and I got a brilliant idea - let's go have fun. I mean why not? People should have fun regularly - its good to do things you like to or new things with someone you like to spend time with. But I am not a 'normal' person. I might have a few 'medical conditions' that require treatment and constant medication to keep me stable.
However, I wanted to go have fun. My husband agreed. Last week I was doing some planning and thought we need to do more fun things. I found some local festivals that sounded good. Now festivals are not the best thing for people who can't stand around, wait in line, or over do things. But sometimes I need to push myself a little bit to get out of my deep ruts of sheer laziness.
My husband has always talked about going to see a Celtic festival or Scottish Highland Games. There are a couple of those around. But the big one is expensive, hotel rooms sell out a year a head and just sound too much for us.
But then I found a smaller festival in its 20th year - Quechee Games - Scottish Festival and Competition. The only catch is it is more than two hours away and only goes from 9am - 4pm. We said there was no way we are getting up on and out of the house by 7am on a Saturday morning so we went up the night before (last night), stopping for dinner on the way. We got to our hotel just after 9pm and went to bed.
This morning we got up, had breakfast and got to the festival as it opened. We set up our chairs and watch the competitions - the things we had never seen before. eventually we moved and stood and watched the parade of clans, piping bands, and some highland dancers. My husband stood in the long line and got the food while I stood in the short line and got the beverages ( a good ideal I think).
After we ate, we watched more competition - caber tossing anyone? I am sure I can't toss a telephone pole around at all and these competitors showed it is much harder than it looks.
Our plan was to stay until 4 when it ended. However after lunch, about 130, I started to fade. I told myself I wouldn't think about leaving until 230 so we could watch more of the competitions. I could have fallen asleep in my chair. I was that tired. We left close to 3.
While I greatly appreciated the opportunity to have some fun, do something different, and spend quality time with my husband. I was exhausted. I have been in bed since we got home. My big ambition was to order pizza delivery since we were home.
It might have been a mistake but I really appreciated doing something new. We don't get to do that very much any more. I may regret it tomorrow..... But I think the benefits of going out and doing something new and different outweighed the potential downside. Even if it costs me a couple days in bed.
However, I wanted to go have fun. My husband agreed. Last week I was doing some planning and thought we need to do more fun things. I found some local festivals that sounded good. Now festivals are not the best thing for people who can't stand around, wait in line, or over do things. But sometimes I need to push myself a little bit to get out of my deep ruts of sheer laziness.
My husband has always talked about going to see a Celtic festival or Scottish Highland Games. There are a couple of those around. But the big one is expensive, hotel rooms sell out a year a head and just sound too much for us.
But then I found a smaller festival in its 20th year - Quechee Games - Scottish Festival and Competition. The only catch is it is more than two hours away and only goes from 9am - 4pm. We said there was no way we are getting up on and out of the house by 7am on a Saturday morning so we went up the night before (last night), stopping for dinner on the way. We got to our hotel just after 9pm and went to bed.
This morning we got up, had breakfast and got to the festival as it opened. We set up our chairs and watch the competitions - the things we had never seen before. eventually we moved and stood and watched the parade of clans, piping bands, and some highland dancers. My husband stood in the long line and got the food while I stood in the short line and got the beverages ( a good ideal I think).
After we ate, we watched more competition - caber tossing anyone? I am sure I can't toss a telephone pole around at all and these competitors showed it is much harder than it looks.
Our plan was to stay until 4 when it ended. However after lunch, about 130, I started to fade. I told myself I wouldn't think about leaving until 230 so we could watch more of the competitions. I could have fallen asleep in my chair. I was that tired. We left close to 3.
While I greatly appreciated the opportunity to have some fun, do something different, and spend quality time with my husband. I was exhausted. I have been in bed since we got home. My big ambition was to order pizza delivery since we were home.
It might have been a mistake but I really appreciated doing something new. We don't get to do that very much any more. I may regret it tomorrow..... But I think the benefits of going out and doing something new and different outweighed the potential downside. Even if it costs me a couple days in bed.
Thursday, August 23, 2018
Post vacation
My life has its ups and downs. I went on vacation for two weeks and paid the price after. I had a whole bunch of doctor appointments and took my mother to her doctor apointments as well. I also did a million loads of laundry, unpacked, cleaned out two weeks worth of weeds in the garden, and ran out of oomph several times.
Between this week and last week, there have been at least three times where I just had to physically collapse and lie down for a couple of hours because I was that tired.
A vacation is restful right? Well sort of. I did more than I should several days by doing things I enjoyed. Every day I took advantage of my mother taking a nap to lie down for a while myself. I also avoided the stairs and stayed downstairs as much as possible. But did over do things many times.
So to complicate our return, not only did I have to recover from a fun but energetic vacation, I had to take care of everything else. I am tired. I will be in post vacation recovery mode for a few more days. This means I will spend a good amount of time lying down, reading books or knitting. Any good books out there?
Between this week and last week, there have been at least three times where I just had to physically collapse and lie down for a couple of hours because I was that tired.
A vacation is restful right? Well sort of. I did more than I should several days by doing things I enjoyed. Every day I took advantage of my mother taking a nap to lie down for a while myself. I also avoided the stairs and stayed downstairs as much as possible. But did over do things many times.
So to complicate our return, not only did I have to recover from a fun but energetic vacation, I had to take care of everything else. I am tired. I will be in post vacation recovery mode for a few more days. This means I will spend a good amount of time lying down, reading books or knitting. Any good books out there?
Tuesday, August 21, 2018
Klutziness
Is being klutzy a chronic disease? I mean its never going away and severely complicates my life sometimes. Granted I can be considered a little 'fragile' or something, but adding klutziness (and forgetfulness - but that's a story for another day) can really complicate things.
I have never been the most coordinated at many things. I have been known to walk into a wall, miss a doorway, or miss things all together. Its been a lifelong condition. And my health issues don't add to it.
I have had several 'klutzy' episodes recently. I fell on my knee a few weeks ago (still healing and multiple doctors have commented on it and express their concern over it). I also caught my heel on the screen door and had a lot of pain and a lot of blood from a 3" scratch. I was weeding the other day and grabbed a thorn bush in addition to the jewel weed I was wripping out gouging my fingers. I also touched a hot pan by accident.... And the list goes on.
Normal people can do this stuff and walk away. Me? I can end up in bed for a day or two. Sometimes I need to modify medications to reduce the chance of infection from scrapes and cuts. A good jolt from a fall and I am done from the day.
But I know I don't want that 'fall risk' label from my doctors. I try to be vague about it when discussing 'klutzy' incidents - except with my orthopedic surgeon because he allows me to blame my knees that like to give way whenever they want. (If you become a 'fall risk' you aren't allowed to go pee without supervision.)
So my klutziness is another chronic ailment.... There is no real treatment but I will continue to live with it as long as I can.
I have never been the most coordinated at many things. I have been known to walk into a wall, miss a doorway, or miss things all together. Its been a lifelong condition. And my health issues don't add to it.
I have had several 'klutzy' episodes recently. I fell on my knee a few weeks ago (still healing and multiple doctors have commented on it and express their concern over it). I also caught my heel on the screen door and had a lot of pain and a lot of blood from a 3" scratch. I was weeding the other day and grabbed a thorn bush in addition to the jewel weed I was wripping out gouging my fingers. I also touched a hot pan by accident.... And the list goes on.
Normal people can do this stuff and walk away. Me? I can end up in bed for a day or two. Sometimes I need to modify medications to reduce the chance of infection from scrapes and cuts. A good jolt from a fall and I am done from the day.
But I know I don't want that 'fall risk' label from my doctors. I try to be vague about it when discussing 'klutzy' incidents - except with my orthopedic surgeon because he allows me to blame my knees that like to give way whenever they want. (If you become a 'fall risk' you aren't allowed to go pee without supervision.)
So my klutziness is another chronic ailment.... There is no real treatment but I will continue to live with it as long as I can.
Friday, August 17, 2018
Those Stressful People
We all have those 'stressful' people and those 'stressful' situations in our lives. And when the two combine so you have 'stressful' people amping up a 'stressful' situation, the drama can be overwhelming. Especially when you have a chronic ailment (or seven).
I have learned how to cope with this. Through avoidance.
If I am stressed because for any reason, I let me become harder to reach. (I am spilling a secret here.) I go into snooze mode. If I am having enough problems with my own emotional or physical self for whatever reason, I tend to 'miss' phone calls, texts, and emails. I don't get back to people for a few hours, days, weeks, depending on the situation.
I will check to make sure there aren't any real disasters or medical issues that I need to deal with, but otherwise they go into snooze mode. This is my way of lowering my stress level and allowing me to cope with my issues. Also, sometimes a quick reaction is not the best in a difficult situation.
Honestly when I am having my own issues I can't cope with yours. So please don't make me. Its not that I don't want to hear from you but sometimes I just can't even talk on the phone or send a quick text or email. I need to go into my hibernation until I can cope again.
Chronic illnesses complicate a lot of things - especially relationships. But please don't blame me if I can't cope with your situations and drama right away.
I have learned how to cope with this. Through avoidance.
If I am stressed because for any reason, I let me become harder to reach. (I am spilling a secret here.) I go into snooze mode. If I am having enough problems with my own emotional or physical self for whatever reason, I tend to 'miss' phone calls, texts, and emails. I don't get back to people for a few hours, days, weeks, depending on the situation.
I will check to make sure there aren't any real disasters or medical issues that I need to deal with, but otherwise they go into snooze mode. This is my way of lowering my stress level and allowing me to cope with my issues. Also, sometimes a quick reaction is not the best in a difficult situation.
Honestly when I am having my own issues I can't cope with yours. So please don't make me. Its not that I don't want to hear from you but sometimes I just can't even talk on the phone or send a quick text or email. I need to go into my hibernation until I can cope again.
Chronic illnesses complicate a lot of things - especially relationships. But please don't blame me if I can't cope with your situations and drama right away.
Monday, August 13, 2018
Vacation
I haven't blogged much because I was on a two week vacation in Vermont with my entire family - including four much loved but very active teenage nieces and nephews. I ended up doing more than I should. I didn't have enough down time by myself - I think I am too accustomed to my quiet time during the day. Our bedroom was on the main floor (=no stairs) but was right off the main living room (=not as quiet or private as I am used to).
While we were there I did manage to do things - go for walks, play mini golf, go out to restaurants, do a little shopping and more. It also meant I stayed behind with my mother when the rest of the family was doing more energetic things - zip lines, mountain roller coasters, etc. I also got to float around in a beautiful lake a couple of times.
By the end of the two weeks I felt relaxed. I really missed our bed which is one of those which you can raise and lower the head and foot. I think I watch too much TV because I also really missed watching recorded shows so I could skip the commercials.
The one problem on our trip was that my husband came home for a couple days to go to work and the exhaust decided to separate from the car. He did get it fixed and came home a day later than planned. However a second portion of the exhaust decided to 'fail'. Luckily my brother used to be a mechanic and finagled a repair with a coat hanger and it happened on Thursday night so I could call and make an appointment for this morning. This means we are down to one car for a day or two - so I have to get up and drive my husband to work.
Another problem when we arrived home and I was seriously looking forward to some horizontal time to catch up on our DVRd shows. No cable, no wifi. A technician came out yesterday and found that the fiber we were connected to in the fiber optic cable failed last week. But she was able to fix it and life was restored to normal.
It was a nice to be away but I am so glad to be home and I can rest for a few days (between going to the gym and three doctor appointments this week) to recover from all my adventures.
While we were there I did manage to do things - go for walks, play mini golf, go out to restaurants, do a little shopping and more. It also meant I stayed behind with my mother when the rest of the family was doing more energetic things - zip lines, mountain roller coasters, etc. I also got to float around in a beautiful lake a couple of times.
By the end of the two weeks I felt relaxed. I really missed our bed which is one of those which you can raise and lower the head and foot. I think I watch too much TV because I also really missed watching recorded shows so I could skip the commercials.
The one problem on our trip was that my husband came home for a couple days to go to work and the exhaust decided to separate from the car. He did get it fixed and came home a day later than planned. However a second portion of the exhaust decided to 'fail'. Luckily my brother used to be a mechanic and finagled a repair with a coat hanger and it happened on Thursday night so I could call and make an appointment for this morning. This means we are down to one car for a day or two - so I have to get up and drive my husband to work.
Another problem when we arrived home and I was seriously looking forward to some horizontal time to catch up on our DVRd shows. No cable, no wifi. A technician came out yesterday and found that the fiber we were connected to in the fiber optic cable failed last week. But she was able to fix it and life was restored to normal.
It was a nice to be away but I am so glad to be home and I can rest for a few days (between going to the gym and three doctor appointments this week) to recover from all my adventures.
Monday, August 6, 2018
Dont Wait For Me
There are many activities available in which I can no longer participate. Most of the time I am fine with that. There are things that I am still able to do - mini golf, for example. I'm a decent player and my husband and I have a running battle on who wins the games (usually him).
But with all the other activities available in life, don't wait for me. I'm not going bungee jumping, mountain climbing, segway riding, etc. I will keep my feet firmly planted on the ground and the rest of my body will appreciate it.
I realize people are polite and want to include everyone in the group into their activities but I do want other people to enjoy doing the things I can't do. I am often happy to sit on the side lines, take pictures, and enjoy their fun.
Maybe in the past I would have been more active but that's okay. I need to conserve my energy and make my choices so as not to cause myself problems or end up resting for three days to recover. I also don't handle stress well either and won't be sitting around 'discussing' topics that don't interest me.
However, just because I may not be active, doesn't mean I should be ignored. I may move slower, rest more, and sit around but I am still a person who deserves as much respect as others. I have noticed that people most often interact with high energy others. But us low energy people have things to say too.
But with all the other activities available in life, don't wait for me. I'm not going bungee jumping, mountain climbing, segway riding, etc. I will keep my feet firmly planted on the ground and the rest of my body will appreciate it.
I realize people are polite and want to include everyone in the group into their activities but I do want other people to enjoy doing the things I can't do. I am often happy to sit on the side lines, take pictures, and enjoy their fun.
Maybe in the past I would have been more active but that's okay. I need to conserve my energy and make my choices so as not to cause myself problems or end up resting for three days to recover. I also don't handle stress well either and won't be sitting around 'discussing' topics that don't interest me.
However, just because I may not be active, doesn't mean I should be ignored. I may move slower, rest more, and sit around but I am still a person who deserves as much respect as others. I have noticed that people most often interact with high energy others. But us low energy people have things to say too.
Friday, August 3, 2018
My Stupid Knee
Back in 2001, I had a wonderful day of skiing that was spoiled by a stupid mogul. I fell. Some guy stopped and said "are you okay? My friend is going for the ski patrol." My reply was "I'm okay, I don't need the ski patrol." He insisted. I said "fine, you can help me untangle my skis." I stood up and my knee bent sideways and that was that.
After a business trip to Japan I had knee surgery to repair my meniscus and was told 'come back if it ever locks up'. It did start locking up and after a year of trying all sorts of PT, I ended up having another surgery to repair my meniscus last fall.
Then after my 'unfortunate' event the other day, my knee locked up this morning. Not as badly as it was before but this is not good. My debate - do I call my doctor now or wait until I see him in October or wait until I am next at the gym and talk to the physical therapist?
I am seriously bummed. Its not an option for more knee surgery on the meniscus in this knee. Its a question of stability. Nothing more. And a knee that likes to lock up is a bad thing. @$%#*($^^&@#^$.
After a business trip to Japan I had knee surgery to repair my meniscus and was told 'come back if it ever locks up'. It did start locking up and after a year of trying all sorts of PT, I ended up having another surgery to repair my meniscus last fall.
Then after my 'unfortunate' event the other day, my knee locked up this morning. Not as badly as it was before but this is not good. My debate - do I call my doctor now or wait until I see him in October or wait until I am next at the gym and talk to the physical therapist?
I am seriously bummed. Its not an option for more knee surgery on the meniscus in this knee. Its a question of stability. Nothing more. And a knee that likes to lock up is a bad thing. @$%#*($^^&@#^$.
Tuesday, July 31, 2018
I Hate It When I Do Stupid Things
Everyone does stupid things. I think I do the dumbest stupid things. Which seems to inevitably to slowing me down for periods of time.
This morning I performed stellar acrobatics and completed a triple lutz followed by a quadruple axel. No actually, I was admiring a beautiful piece of wood and my bifocals allowed me not to be able to see the edge of the red stained chairs. The result is I went down three steps and landed on my newly-operated-on-knee, elbow, and transformed a pair of capris into a pair of shorts (hemming now required). It doesn't help that my other knee doesn't have an ACL and likes to give way - which I think it did duirng this spectacle.
I told the shop owner that I would not sue and I also would not inform my orthopedic surgeon. He also gave me some ice.
I came home and put ice on my knee and lay down for a while. But my knee and elbow are definitely sore. That means I get to sit down on my butt for a few days and be lazy (lazier than normal). I tried walking around a bit on my knee and it is weight bearing but it is definitely sore and requires more ice and elevation. I hope to rest for a couple of days and then go back to the store, return the ice pack, and finally get a good look at the amazing hand crafted furniture.
My husband gave me a hard time about how I can't be trusted to go anywhere. sometimes I think he might be right. (No, I didn't say he was right, I said sometimes he might be right.) There is a difference.
The real thing is most people do stupid things but I am more 'fragile' than everyone else and its really hard to limp on bth knees.....
But I really hate it when I do stupid things.
This morning I performed stellar acrobatics and completed a triple lutz followed by a quadruple axel. No actually, I was admiring a beautiful piece of wood and my bifocals allowed me not to be able to see the edge of the red stained chairs. The result is I went down three steps and landed on my newly-operated-on-knee, elbow, and transformed a pair of capris into a pair of shorts (hemming now required). It doesn't help that my other knee doesn't have an ACL and likes to give way - which I think it did duirng this spectacle.
I told the shop owner that I would not sue and I also would not inform my orthopedic surgeon. He also gave me some ice.
I came home and put ice on my knee and lay down for a while. But my knee and elbow are definitely sore. That means I get to sit down on my butt for a few days and be lazy (lazier than normal). I tried walking around a bit on my knee and it is weight bearing but it is definitely sore and requires more ice and elevation. I hope to rest for a couple of days and then go back to the store, return the ice pack, and finally get a good look at the amazing hand crafted furniture.
My husband gave me a hard time about how I can't be trusted to go anywhere. sometimes I think he might be right. (No, I didn't say he was right, I said sometimes he might be right.) There is a difference.
The real thing is most people do stupid things but I am more 'fragile' than everyone else and its really hard to limp on bth knees.....
But I really hate it when I do stupid things.
Monday, July 30, 2018
Recovering
Today is Monday. On Saturday, I probably know I did too much. Sunday I was tired and lay down for two hours in the afternoon. Last night I slept for 12 hours. I will attempt to pretend to be normal today but who knows how I will feel.
One of the many wondrous things about me and my health is that even if I do something bad (meaning over doing things) one day, it doesn't mean I can recover in one day. Its often a couple of days to recover.
I have plans for today and hope to make it through them. Especially since my 88 year old mother will be with us and I should think I have more energy than her. Life isn't fair sometimes.
One of the many wondrous things about me and my health is that even if I do something bad (meaning over doing things) one day, it doesn't mean I can recover in one day. Its often a couple of days to recover.
I have plans for today and hope to make it through them. Especially since my 88 year old mother will be with us and I should think I have more energy than her. Life isn't fair sometimes.
Friday, July 27, 2018
Beware the Horoscope
I don't usually believe my horoscope. I don't read it very much either. Sometimes I take a glance at it as I go through the paper. But today's horoscope I saw and read it and am concerned:
"You could feel out of sorts. Generally, the month before your birthday you might feel a little down. Often people look at their past year and wonder whether their next year could be as meaningful or better. Today's eclipse could cause fatigue. Tonight: Know when to say "no.""
"You could feel out of sorts. Generally, the month before your birthday you might feel a little down. Often people look at their past year and wonder whether their next year could be as meaningful or better. Today's eclipse could cause fatigue. Tonight: Know when to say "no.""
And I am concerned: 'Today's eclipse could cause fatigue.'
Yesterday I was so tired I skipped my knitting group and didn't leave the house really. I took a nap too. If I am more tired tonight than I was last night I could be in trouble here.
I think I need to stop reading my horoscope because I could get fatigued.
Wednesday, July 25, 2018
Planning Through My Life
My life is very structured. I never just drop anything and go do something else. Why? Because I have everything planned. There is only so much I can do in a day - which is about a tenth of what a normal person can do.
In the big picture, I go to the gym three days a week. The gym is near the hospital which contains my doctors. All doctor appointments are scheduled on gym days. The gym is also near my hair dresser and manicurist. Again, those appointments are scheduled on gym days. And no gym day can contain more than one thing plus the gym because I can't.
On the days I don't go to the gym, I do things that go in directions that are not near the gym. Again, I only do two things in one day. Thursdays I go to my knitting group and then I might do one other thing.
My husband claims I should only do one thing each day. Personally I think I can do two things. And it depends on how you count things. Somethings don't count. If I go to the gym and then stop at the library for ten minutes, I call that one thing. I left the house and came back once. Will I go back out again? Maybe, maybe not. But I probably will cook dinner too. That's my second thing. Some days I am too tired to cook dinner.
I plan what I want to do. Some days I can't even do what is planned. Those days I rest so I can pretend I will move my plans until the next day. Sometimes my plans go up in smoke and never happen. On the 'up' side, I get to watch my fair share of 'quality' TV on Lifetime, HGTV, Food Network, Animal Planet, and more.
As my health has tanked, my spontaneity has evaporated. So I plan and pretend I am doing everything I want in life. But we all know that is not the case.
In the big picture, I go to the gym three days a week. The gym is near the hospital which contains my doctors. All doctor appointments are scheduled on gym days. The gym is also near my hair dresser and manicurist. Again, those appointments are scheduled on gym days. And no gym day can contain more than one thing plus the gym because I can't.
On the days I don't go to the gym, I do things that go in directions that are not near the gym. Again, I only do two things in one day. Thursdays I go to my knitting group and then I might do one other thing.
My husband claims I should only do one thing each day. Personally I think I can do two things. And it depends on how you count things. Somethings don't count. If I go to the gym and then stop at the library for ten minutes, I call that one thing. I left the house and came back once. Will I go back out again? Maybe, maybe not. But I probably will cook dinner too. That's my second thing. Some days I am too tired to cook dinner.
I plan what I want to do. Some days I can't even do what is planned. Those days I rest so I can pretend I will move my plans until the next day. Sometimes my plans go up in smoke and never happen. On the 'up' side, I get to watch my fair share of 'quality' TV on Lifetime, HGTV, Food Network, Animal Planet, and more.
As my health has tanked, my spontaneity has evaporated. So I plan and pretend I am doing everything I want in life. But we all know that is not the case.
Tuesday, July 24, 2018
Coping
Sometimes people say to me 'I don't know how you do it' meaning 'how do I live with dilapidated body'. (I prefer dilapidated to defective, damaged, or other terms.) Well, sometimes I don't know how I do it either. But I do k now somethings.
Life with chronic illness is not something done alone.
Life with chronic illness is not something done alone.
- I have a team of doctors. All my doctors are at the same hospital so they can talk to me and about me. I appreciate it when they do ask questions of each other about my conditions because my medical history is complicated and involves several specialists.
- I have a 'team' of friends who try to understand my ailments as much as I try to understand theirs. If you don't have ailments, you don't get my life. (I do have friends who are healthy but they do not always understand.) These are the people you call when the doctor says 'but we need more tests to see what is going on here' or 'here's another sucky diagnosis'. Together we can figure out how significant the new issue is. There's nothing like having a friend on the other end of the phone who is googling away to help interpret the latest news.
- I have a 'team' of online resources. These range from specific websites to secret groups on Facebook where we can share our ailments without being found by family members before we are ready to share or just to b*tch about the latest news. One website for chronic illnesses I have found which is awesome for me is The Mighty. This is my current favorite. There are others for when my mood changes.
My point is I could not cope with this alone. I need emotional support to deal with this. I also know my emotional side is just as important as my physical side. Physical issues result in emotional issues such as anxiety, depression, stress, and more. I know I have to treat both so as not to implode.
Yes there are days when I wake up and wonder how will I cope today. But I have learned to reach out. I have learned to say no. I have learned to be proactive in my care to speak up or take a day or afternoon for myself - the proverbial 'mental health' day to give myself a break.
This is how I cope.
Saturday, July 21, 2018
In Pain
I was having a good day. But not any more. I mean I did have a good day. I did a bunch of things I wanted to do. I took it easy. I warped my loom. I did some knitting. I went on a couple of errands. We had dinner. This is bad.
In addition to my 'chronic' ailments I have a bad back. I mean a really bad back. It started with degenerating disks in my lower back (L4-5, L6-7 or something like that) and then I found out I had a bone spur in my neck (C4 I think?). Finally, I have desiccated disks at bra strap height - whatever that is in medical terms but its T something.
I usually do okay because of all my meds. But today it is bad. I went out and did some weeding and called Boots (the good cat). I came in without Boots and ZDpot (the bad cat) tried to run out. I grabbed him. And it was bad. I couldn't sit up long enough to watch Jeopardy.
My doctor told me no ice on my back. But its summer and I really don't want a heating pad. And it all hurts. And really sucks. (Consider me honest). I'm not sure I can sleep tonight (alcohol isn't helping either).
If anyone has advice, I would appreciate it. I am open for suggestions. I have a really good pain management team. I can get an appointment to see them. But that is not a long term solution - go to the dr, get an appointment for some nasty injections in my back, and then feel better for a while. I would prefer to be healthy for awhile ever.
Okay, I'm cranky. I am in a lot of pain. I can barely turn my neck to the right - which is the direction to the TV in the bedroom. I had to go to months of PT a couple of years ago for my neck.
Honestly, I want a magic wand to wave over me and make everything stop hurting for good. But I am whining.
In addition to my 'chronic' ailments I have a bad back. I mean a really bad back. It started with degenerating disks in my lower back (L4-5, L6-7 or something like that) and then I found out I had a bone spur in my neck (C4 I think?). Finally, I have desiccated disks at bra strap height - whatever that is in medical terms but its T something.
I usually do okay because of all my meds. But today it is bad. I went out and did some weeding and called Boots (the good cat). I came in without Boots and ZDpot (the bad cat) tried to run out. I grabbed him. And it was bad. I couldn't sit up long enough to watch Jeopardy.
My doctor told me no ice on my back. But its summer and I really don't want a heating pad. And it all hurts. And really sucks. (Consider me honest). I'm not sure I can sleep tonight (alcohol isn't helping either).
If anyone has advice, I would appreciate it. I am open for suggestions. I have a really good pain management team. I can get an appointment to see them. But that is not a long term solution - go to the dr, get an appointment for some nasty injections in my back, and then feel better for a while. I would prefer to be healthy for a
Okay, I'm cranky. I am in a lot of pain. I can barely turn my neck to the right - which is the direction to the TV in the bedroom. I had to go to months of PT a couple of years ago for my neck.
Honestly, I want a magic wand to wave over me and make everything stop hurting for good. But I am whining.
Tuesday, July 17, 2018
What Is A Chronic Illness?
So I blog about chronic ailments but what are they really? Medicinenet defines them as:
"A chronic disease is one lasting 3 months or more, by the definition of the U.S.National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear."
I saw another definition which defined them as one lasting a year or more. (But it doesn't really matter because they all suck.)
"A chronic disease is one lasting 3 months or more, by the definition of the U.S.National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear."
I saw another definition which defined them as one lasting a year or more. (But it doesn't really matter because they all suck.)
Just to be clear an 'acute' ailment will appear and leave. A 'terminal' ailment does you in.
Once you get a chronic illness, you are screwed. Cancer is now treated more as a chronic ailment than a terminal one - if it doesn't do you in at first and you get through treatment, you are monitored for the rest of your life. So if I count those in, I have four chronic ailments. Plus my bad back - it fits the definition of chronic ailments but I'm not sure it is really considered one.
Having chronic illnesses means you have to alter your life and lifestyle permanently. It can be very frustrating, depressing, anxiety inducing, and down right stressful. The emotional strain of having a chronic illness can actually be the worst part.
As always, your emotional side is just as important your physical side. If you wake up on a 'bad day', you just erase your calendar for a couple of days so you can take care of yourself somehow. And that lunch date that you were really waiting for is out the window. Bummer. An emotional let down - something fun that you wanted to do is gone. And so the emotional roller coaster takes a nose dive, again.
And you wonder why so many people with chronic illnesses are often taking anti-depressants. Along with a million other medications. I have three drawers full of prescription bottles that I dig through weekly to fill my pill box - the kind with a big compartment for morning and evening.
Anyway, having a chronic illness or four can just suck.
Once you get a chronic illness, you are screwed. Cancer is now treated more as a chronic ailment than a terminal one - if it doesn't do you in at first and you get through treatment, you are monitored for the rest of your life. So if I count those in, I have four chronic ailments. Plus my bad back - it fits the definition of chronic ailments but I'm not sure it is really considered one.
Having chronic illnesses means you have to alter your life and lifestyle permanently. It can be very frustrating, depressing, anxiety inducing, and down right stressful. The emotional strain of having a chronic illness can actually be the worst part.
As always, your emotional side is just as important your physical side. If you wake up on a 'bad day', you just erase your calendar for a couple of days so you can take care of yourself somehow. And that lunch date that you were really waiting for is out the window. Bummer. An emotional let down - something fun that you wanted to do is gone. And so the emotional roller coaster takes a nose dive, again.
And you wonder why so many people with chronic illnesses are often taking anti-depressants. Along with a million other medications. I have three drawers full of prescription bottles that I dig through weekly to fill my pill box - the kind with a big compartment for morning and evening.
Anyway, having a chronic illness or four can just suck.
Saturday, July 14, 2018
Falling Asleep On The Sofa
I hate it when I fall asleep on the sofa. Usually it means I will wake up at 3 am and crawl into bed where I can't get back to sleep and end up exhausted the next day.
Last night, I was so tired after dinner, that I evidently fell asleep on the sofa watching TV with my husband. I don't remember that. I do remember being tired while I watched TV and waking up in bed. This morning I got to play the game of 'where are my glasses' (they were on the coffee table).
I get extra points because apparently when I basically sleep walked to bed, I remembered to take all my pills and I slept all night. That was about 10 hours of very needed sleep.
Sleep is a restorative and even more important with any ailments. I have a big trip planned for this afternoon where I will be gone for about six hours and driving for two of them. I needed the sleep so I could manage the trip.
And tonight, my goal is to get another 10 hours of sleep. But I'll have to hope I don't fall asleep on the sofa again. Maybe I'll watch TV in bed.
Last night, I was so tired after dinner, that I evidently fell asleep on the sofa watching TV with my husband. I don't remember that. I do remember being tired while I watched TV and waking up in bed. This morning I got to play the game of 'where are my glasses' (they were on the coffee table).
I get extra points because apparently when I basically sleep walked to bed, I remembered to take all my pills and I slept all night. That was about 10 hours of very needed sleep.
Sleep is a restorative and even more important with any ailments. I have a big trip planned for this afternoon where I will be gone for about six hours and driving for two of them. I needed the sleep so I could manage the trip.
And tonight, my goal is to get another 10 hours of sleep. But I'll have to hope I don't fall asleep on the sofa again. Maybe I'll watch TV in bed.
Friday, July 13, 2018
Wants and Needs
I had a dilemma. I was exhausted but I wanted the following:
- A nap
- A shower
- Clean sheets on the bed
- Clean sheets on the bed because they just really needed to be changed and there is nothing like getting into bed with clean sheets on it.
- A shower because I went to the gym this morning and I really needed one.
- A nap would make sense after I was clean and the bed was made.
- So I pulled the old sheets off the bed and put the bottom sheet only on the bed.
- I lay down for 20 minutes to rest up so I could shower without being worried about collapsing.
- Then I showered and put pillow cases on two pillows (one behind my knees and one behind my back) and lay down again.
- I left the rest of the bed making until my husband gets home from work. Two more pillow cases, top sheet, blankets, and bedspread are waiting for him.
This is my life. If my husband is lucky he won't need to cook dinner too.
Tuesday, July 10, 2018
Weather and Illnesses
Back when I first injured my knee in 2001 (a great day of skiing gone bad) my father said to me 'now you will have a knee to help you tell the weather'. I'm not sure that's true but I can really feel weather changes.
Cold is very cold to me. I have Raynaud's (as a joyous addition to anything else) where my fingers and toes will turn white down to the second joint when they get cold. The only way to get them warm again is to put them in warm water. I can't tolerate cold on my hands. In the winter, when I used to drive home from work on cold days, my fingers would get so cold I would tuck one hand under my leg to try to warm them up - which wouldn't work - even if I was wearing heavy mittens.
I used to be a winter person. I would go out and play in the snow - ski, snow shoe, or just walk in the snow - but now I get to watch the snow fall through the window. I am more stiff and sore than usual in winter. But I can use my heating pad and electric blanket to keep me warm.
That's just one issue.
I like it when its warm out but not when its hot. If it gets too hot and humid, I need to seek refuge in air conditioning. In the awful heat and humidity (over a week of over 90 with high humidity), I was exhausted every day. In addition to amplifying pain, fibromyalgia hates heat. It will flare up. I finally got a good night's sleep after a week of exhaustion - more than usual.
I live in New England where the weather is different every second it seems. Its not necessarily a good climate for me. But I'm here and I will cope... And take advantage of the modern conveniences of AC and heat.
Cold is very cold to me. I have Raynaud's (as a joyous addition to anything else) where my fingers and toes will turn white down to the second joint when they get cold. The only way to get them warm again is to put them in warm water. I can't tolerate cold on my hands. In the winter, when I used to drive home from work on cold days, my fingers would get so cold I would tuck one hand under my leg to try to warm them up - which wouldn't work - even if I was wearing heavy mittens.
I used to be a winter person. I would go out and play in the snow - ski, snow shoe, or just walk in the snow - but now I get to watch the snow fall through the window. I am more stiff and sore than usual in winter. But I can use my heating pad and electric blanket to keep me warm.
That's just one issue.
I like it when its warm out but not when its hot. If it gets too hot and humid, I need to seek refuge in air conditioning. In the awful heat and humidity (over a week of over 90 with high humidity), I was exhausted every day. In addition to amplifying pain, fibromyalgia hates heat. It will flare up. I finally got a good night's sleep after a week of exhaustion - more than usual.
I live in New England where the weather is different every second it seems. Its not necessarily a good climate for me. But I'm here and I will cope... And take advantage of the modern conveniences of AC and heat.
Monday, July 9, 2018
Chronic Illness Cost Control
I am very interested in following the new health care institution being created at Amazon, JP Morgan, and Berkshire Hathaway to deal with their combined 1.2 million employees. I think this will be a great microcosm of the US population for a new take on health insurance.
I do not envy Atul Gawande's issues in leading this new company. However, of the top five key challenges, I am most interested in how he handles the issues relating to chronic diseases.
"Challenge: Attacking chronic disease; and variations in care
How: Leverage technology to improve patient knowledge, contract with select providers
Risk: Changing patient behavior is the hardest thing to do in health care, and may prove costly
A crucial part of Gawande’s efforts will be addressing the crushing burden of chronic disease. These preventable illnesses, such as diabetes and heart disease, dramatically magnify costs: Studies have established that 5 percent of U.S. patients account for nearly 50 percent of spending in the U.S.
“Most of those 5 percent have multiple chronic illnesses that tend to not be well-managed within our fragmented health care system,” said Dreyfus, the Blue Cross chief executive. He added that one of Gawande’s first efforts will likely be trying to understand the extent of the disease burden among the
The new venture could help improve their care and cut costs by standardizing treatment regimens and directing employees to providers with proven track records. Given the expertise of Amazon, JPMorgan and Berkshire Hathaway in analyzing data and assessing risks, Gawande will be able to use machine learning software and other technologies to better predict the onset of disease and take preventive measures.
That’s where Blumenthal sees the greatest potential for Gawanda and the new health venture — using the power of technology to help inform patients and deliver care at the time when it can make the most difference.
“The one major advantage that this combination has is Amazon and its IT capabilities and the network of consumers that Alexa touches,” he said, adding that the PillPack acquisition further enhances its ability to leverage technology.
“I would extend that well beyond the pharmaceutical market to begin to try to influence the decisions that consumers make with their clinicians about health care in a very personal way,” Blumenthal said. “That doesn’t mean changing the way providers behave so much as it means changing the way consumers behave, making them smarter purchasers.”"
"Challenge: Attacking chronic disease; and variations in care
How: Leverage technology to improve patient knowledge, contract with select providers
Risk: Changing patient behavior is the hardest thing to do in health care, and may prove costly
A crucial part of Gawande’s efforts will be addressing the crushing burden of chronic disease. These preventable illnesses, such as diabetes and heart disease, dramatically magnify costs: Studies have established that 5 percent of U.S. patients account for nearly 50 percent of spending in the U.S.
“Most of those 5 percent have multiple chronic illnesses that tend to not be well-managed within our fragmented health care system,” said Dreyfus, the Blue Cross chief executive. He added that one of Gawande’s first efforts will likely be trying to understand the extent of the disease burden among the
The new venture could help improve their care and cut costs by standardizing treatment regimens and directing employees to providers with proven track records. Given the expertise of Amazon, JPMorgan and Berkshire Hathaway in analyzing data and assessing risks, Gawande will be able to use machine learning software and other technologies to better predict the onset of disease and take preventive measures.
That’s where Blumenthal sees the greatest potential for Gawanda and the new health venture — using the power of technology to help inform patients and deliver care at the time when it can make the most difference.
“The one major advantage that this combination has is Amazon and its IT capabilities and the network of consumers that Alexa touches,” he said, adding that the PillPack acquisition further enhances its ability to leverage technology.
“I would extend that well beyond the pharmaceutical market to begin to try to influence the decisions that consumers make with their clinicians about health care in a very personal way,” Blumenthal said. “That doesn’t mean changing the way providers behave so much as it means changing the way consumers behave, making them smarter purchasers.”"
I am surprised but not amazed by the statistic that says 5 percent of patients account for 50 percent of medical costs. I had more doctor appointments last year than my octogenarian parents, combined. My mother has RA as do I. My father had pancreatic cancer and was in active treatment. But I still had more doctor visits.
I would prefer to have my care more combined and less costly for myself and my insurance companies. I also spend a lot of time and effort going to the (damn) doctor. I dislike going to the doctor, being an 'enigma' because of my multiple ailments, and end up with a couple of referrals to take care of additional issues. Even if they are all in the same medical facility, I have to wait to get into to see them.
Each trip takes a lot of effort out of me. I have limitations on what I can do and if I could get my care more coordinated it would my life much easier. However, standardized treatment does concern me. Every patient is different and we are in the age of individualized care, not standardized.
But I do look at this as change for the future which could have a huge impact on US medical care. I take the attitude that change is always good. Any other attitude is self defeating.
Friday, July 6, 2018
Chronic Illness Complicates Everything
As a normal person, you get something stuck up under your gum that irritates you and you can't get it out so you end up at the dentist. They get it out and you go on with your life.
I have had something stuck up under my gum line since last Friday. Its been bothering me. It has been bleeding sometimes. It is driving me crazy. Yesterday I couldn't even brush my teeth in the area because it was so sore. So I called the dentist. My regular dentist is on vacation so I got to see her partner who doesn't know me as well. No big deal.
When I got there I told the dentist about the short story that it has been bugging me since last Friday and hasn't seemed to get better, bleeding off and on, etc. He said, okay, let's take a look.
Before I would open my mouth for him to look at it, I told him about my RA, depressed immune system, and pain patch which hides all pain until it gets really bad. Then I opened my mouth. What did he say? 'It looks like a canker sore between your teeth.'
Has anyone else on the planet had a canker sore between their teeth? I don't think so. So we had a little conversation about my RA medications which sometimes cause mouth sores and how this isn't really a dental problem even though its between my teeth. He had his assistant talk to my rheumatologist's office and sent pictures of my lovely canker sore. He also prescribed an oral rinse and a topical cream to put on it. It should be better by Monday and if not see my rheumatologist. Or go see an allergist (which I don't have but probably should at this point) or a dermatologist (which I do have).
For Pete's sake, its supposed to be a minor dental problem, not a medical dilemma that requires a specialist. Who knew RA and its ensuing suppressed immune system manages to screw up everything. And aggravate the crap out of me.
I have had something stuck up under my gum line since last Friday. Its been bothering me. It has been bleeding sometimes. It is driving me crazy. Yesterday I couldn't even brush my teeth in the area because it was so sore. So I called the dentist. My regular dentist is on vacation so I got to see her partner who doesn't know me as well. No big deal.
When I got there I told the dentist about the short story that it has been bugging me since last Friday and hasn't seemed to get better, bleeding off and on, etc. He said, okay, let's take a look.
Before I would open my mouth for him to look at it, I told him about my RA, depressed immune system, and pain patch which hides all pain until it gets really bad. Then I opened my mouth. What did he say? 'It looks like a canker sore between your teeth.'
Has anyone else on the planet had a canker sore between their teeth? I don't think so. So we had a little conversation about my RA medications which sometimes cause mouth sores and how this isn't really a dental problem even though its between my teeth. He had his assistant talk to my rheumatologist's office and sent pictures of my lovely canker sore. He also prescribed an oral rinse and a topical cream to put on it. It should be better by Monday and if not see my rheumatologist. Or go see an allergist (which I don't have but probably should at this point) or a dermatologist (which I do have).
For Pete's sake, its supposed to be a minor dental problem, not a medical dilemma that requires a specialist. Who knew RA and its ensuing suppressed immune system manages to screw up everything. And aggravate the crap out of me.
Thursday, July 5, 2018
Finding Support While Staying Home
The internet can be a very bad place to go when looking for emotional uplifts. Its full of trolls, 'fake' news, politicians, natural and human made disasters, and all sorts of other wonderful stuff that I prefer not to know about.
If you post on social media about feeling like crap you get all sorts of 'positive' replies: "I'll pray for you" (thanks but not my thing), or "you need to switch to a raw vegan diet and drink a cup of apple cider vinegar three times a day" (thanks but I eat pretty healthy and am capable of selecting my own diet), or there is a 'natural doctor in Timbuktu who cured me of my ailment and I am sure he will cure you too if you send me $1,000,000 to connect you with him" (um, no way.). It may make you feel better but I have found I need to be a bit more selective about what I post and where.
Support groups can be wonderful things. But with a chronic illness and you are having a bad day, you aren't going to make it to a meeting. That would mean getting out of bed, putting on clothes, and getting in the car which often is a bit much.
So online it is to find support. One site I have found to be very helpful with chronic illnesses is The Mighty. It covers all sorts of fun ailments like chronic illness, cancer, disability, rare disease and another 600+ ailments and allows you submit stories, read other people's stories and its full of normal people who feel the humor and sadness of coping with ailments all the time. If you are in the chronic illness category, I highly recommend it.
If you are looking for cancer support, I suggest you go over to my breast cancer blog and look over there. But whatever you have do not skip your emotional needs. They are just as important as your physical ones.
If you post on social media about feeling like crap you get all sorts of 'positive' replies: "I'll pray for you" (thanks but not my thing), or "you need to switch to a raw vegan diet and drink a cup of apple cider vinegar three times a day" (thanks but I eat pretty healthy and am capable of selecting my own diet), or there is a 'natural doctor in Timbuktu who cured me of my ailment and I am sure he will cure you too if you send me $1,000,000 to connect you with him" (um, no way.). It may make you feel better but I have found I need to be a bit more selective about what I post and where.
Support groups can be wonderful things. But with a chronic illness and you are having a bad day, you aren't going to make it to a meeting. That would mean getting out of bed, putting on clothes, and getting in the car which often is a bit much.
So online it is to find support. One site I have found to be very helpful with chronic illnesses is The Mighty. It covers all sorts of fun ailments like chronic illness, cancer, disability, rare disease and another 600+ ailments and allows you submit stories, read other people's stories and its full of normal people who feel the humor and sadness of coping with ailments all the time. If you are in the chronic illness category, I highly recommend it.
If you are looking for cancer support, I suggest you go over to my breast cancer blog and look over there. But whatever you have do not skip your emotional needs. They are just as important as your physical ones.
Wednesday, July 4, 2018
One Of My Many Ailments: Fibromyalgia
Fibromyalgia is so much fun. I have to say its a joy to have. It makes you sweat all the time when your aren't exercising so you look like you just ran a marathon when all you did was sit on your sofa. Pain and confusion abound. And everyone reacts differently. As I said, its a joy. You get treated for pain and depression.... But there is no cure for it.
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Note those words: 'amplifies painful sensations'. This is key to the 'joy' in fibro.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
I went through breast cancer so maybe that's my trauma - or 'significant psychological stress'.
Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
Symptoms of fibromyalgia include:
Fibromyalgia often co-exists with other painful conditions, such as:
Causes: Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
Nerves overreact to pain. How wonderful. So basically the pain is magnified.
Risk factors for fibromyalgia include:
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
I went through breast cancer so maybe that's my trauma - or 'significant psychological stress'.
Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression.
Or did fibromyalgia give me anxiety and depression - or can I blame that on my breast cancer too?
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
Yes, I exercise. But I can only exercise every other day because I have to recover from the exercise of what I have done. Stress-reduction measures for me are reading, watching bad tv, knitting, and weaving.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation and stress-reduction measures also may help.
Yes, I exercise. But I can only exercise every other day because I have to recover from the exercise of what I have done. Stress-reduction measures for me are reading, watching bad tv, knitting, and weaving.
Symptoms of fibromyalgia include:
- Widespread pain. The pain associated with fibromyalgia often is described as a constant dull ache that has lasted for at least three months. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
- Fatigue. People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is often disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea.
- Cognitive difficulties. A symptom commonly referred to as "fibro fog" impairs the ability to focus, pay attention and concentrate on mental tasks.
So do I have 'chemobrain' or 'fibro fog' or both? And if both, how can I form a coherent thought at all? And apnea? Got that too but I can't sleep with an f*%^$#ing mask on my face.
- Irritable bowel syndrome
- Migraine and other types of headaches
- Interstitial cystitis or painful bladder syndrome
- Temporomandibular joint disorders
Or maybe it can coexist with rheumatoid arthritis?
- Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
- Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
- Physical or emotional trauma. Fibromyalgia can sometimes be triggered by a physical trauma, such as a car accident. Psychological stress may also trigger the condition.
Why does it hurt?; Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Nerves overreact to pain. How wonderful. So basically the pain is magnified.
Risk factors for fibromyalgia include:
- Your sex. Fibromyalgia is diagnosed more often in women than in men.
- Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
- Other disorders. If you have osteoarthritis, rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
Complications: The pain and lack of sleep associated with fibromyalgia can interfere with your ability to function at home or on the job. The frustration of dealing with an often-misunderstood condition also can result in depression and health-related anxiety."*
Yep. Got that ' depression and health-related anxiety'. But did they come from having cancer twice and the fear of a recurrence or as part of my RA and fibro medical crap? Or did I get a double dose because of all my ailments.
I don't know. I just wanted to tell readers more about one of my many ailments. I will get through the other ones over time I'm sure. Because they are what makes up with my 'chronic illness life'.
*From Mayo Clinic
Monday, July 2, 2018
Recovery Mode
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Boots (the Good Cat) |
I went from being pouty and whiny Friday night to being exhausted. Going back to that spoon theory thing, I used probably eight spoons at once on Saturday by getting up early, going to the beach and then for a long walk on the beach. Then we went out to lunch before coming home. I was falling asleep in the car on the way home and got in bed but didn't really nap.
Saturday night I attempted to get a good night's sleep but Boots (our 'good' cat) woke me up at 6 am, just because he could. I also almost napped in the afternoon but didn't. Napping can be good but sometimes resting is just as good because a nap can cut into the amount of time I am able to sleep at night.
Last night, I went to bed early (no judgement please - but it was still light out) and slept 630 this morning, which was ten hours of sleep. I have a bunch of things to do today but am not rushing out of bed to do anything. I need to take it easy. My feet still hurt from walking on Saturday. I need to finish recovering from Saturday before starting my week.
If I don't finish recovering, I will be exhausted all week. I sneezed once on Saturday and woke up yesterday and today feeling sniffly. If I dont recover, I could end up with a cold, which means a week in bed, which means no fun, which means blah, blah, blah.....
Let me finish recovering and being a wimp for a few days.
Friday, June 29, 2018
In A Pouty, Whiney Mood (I'm Allowed)
I am in a pouty, whiney mood. Well, lets see. Its a bazillion degrees outside and going to stay nice and hot and humid for a week. This does not do my ailments any good.
Second, I have felt like I had something stuck in between my teeth for a day or two. It has been annoying me. And was starting to drive me crazy. So I used floss, those little brushes for between your teeth, I put a new head on my toothbrush, mouth wash, salt water rinses, (repeat all several times) and all I have done is really irritate the area and now its sore and bleeding. I have given up on it for the evening. I will deal with it tomorrow.
Next a slug killed two of my tomato plants - I got revenge on the slug by using some nasty fungicide on it. Tomorrow I need to go back and decimate the rest of his buddies. (The fungicide I use is BT based which is naturally occurring and is okay for organic gardening.)
I needed a nap this afternoon which I did not get and is contributing to how I feel. And finally, I want to get up early in the morning so we can go to the beach. I'm not good at getting up early but we want to get there before it gets too crowded - nothing like driving an hour to the beach and finding out the parking lot is closed because its full. I will definitely need a real nap tomorrow afternoon.
I'm tired, hot, mad at Evil Kitty because I had to carry him in (and he really needs a diet), and my tooth is bugging me. RA and fibromyalgia don't tolerate heat well.
I think I just need to go to bed. And sleep off my poutiness and whininess. For now. Until its return.
Second, I have felt like I had something stuck in between my teeth for a day or two. It has been annoying me. And was starting to drive me crazy. So I used floss, those little brushes for between your teeth, I put a new head on my toothbrush, mouth wash, salt water rinses, (repeat all several times) and all I have done is really irritate the area and now its sore and bleeding. I have given up on it for the evening. I will deal with it tomorrow.
Next a slug killed two of my tomato plants - I got revenge on the slug by using some nasty fungicide on it. Tomorrow I need to go back and decimate the rest of his buddies. (The fungicide I use is BT based which is naturally occurring and is okay for organic gardening.)
I needed a nap this afternoon which I did not get and is contributing to how I feel. And finally, I want to get up early in the morning so we can go to the beach. I'm not good at getting up early but we want to get there before it gets too crowded - nothing like driving an hour to the beach and finding out the parking lot is closed because its full. I will definitely need a real nap tomorrow afternoon.
I'm tired, hot, mad at Evil Kitty because I had to carry him in (and he really needs a diet), and my tooth is bugging me. RA and fibromyalgia don't tolerate heat well.
I think I just need to go to bed. And sleep off my poutiness and whininess. For now. Until its return.
Wednesday, June 27, 2018
Spoon Theory and Life
Are you familiar with spoon theory? It sums up my life and abilities.
Yesterday I stopped by my mother's house and was looking for more paper napkins as there were none left on the table. I asked my mother if she knew where they were and she did not. Unfortunately, they have a split level so I had to check upstairs and downstairs. I went down first and then up two flights and never found them (they can use paper towels as napkins for a couple days) but that climb up two flights felt like a four spoon activity and I only had two spoons left in me. I went home and lay down until I had the energy to shower.
This is a common occurrence for me - needing to rest for basic activities. My days are short. People wonder why. But I count my spoons and rest a lot.
Monday, June 25, 2018
Bedtime
I was never the child who wanted to stay up late (unless is was the annual Miss America Pageant - don't ask, we thought it was awesome). I was happy to go home and go to bed by 9 o'clock. In college, I would stay up late, but would nap often. Also, I was so busy studying (beer) that I would not notice how late it got. Maybe I was sleep deprived for four years.
When I met my husband, I was very concerned about his sleep habits, among other things. If I married someone who wanted to stay up until midnight every night, it would not be a good relationship. I happily discovered that he is an early to bed person as well.
Now, as my body has continued to fall apart, I have problems staying up until 9pm... I used to try to stay up until sundown.... But that doesn't work.
RA causes fatigue. Fibromyalgia causes fatigue. Pain causes fatigue. Fatigue causes fatigue. Last night I was in bed at 730pm and didn't wake up until 6am. That was a whopping 10.5 hours of sleep. I needed it.
Tonight my bedtime will be around 830 probably.... but I will not put money on that.
When I met my husband, I was very concerned about his sleep habits, among other things. If I married someone who wanted to stay up until midnight every night, it would not be a good relationship. I happily discovered that he is an early to bed person as well.
Now, as my body has continued to fall apart, I have problems staying up until 9pm... I used to try to stay up until sundown.... But that doesn't work.
RA causes fatigue. Fibromyalgia causes fatigue. Pain causes fatigue. Fatigue causes fatigue. Last night I was in bed at 730pm and didn't wake up until 6am. That was a whopping 10.5 hours of sleep. I needed it.
Tonight my bedtime will be around 830 probably.... but I will not put money on that.
Friday, June 22, 2018
A Pain In My Neck
In addition to all my ailments, my body likes to fall apart on me. Since the late 1980s, I have had problems with the ulnar tunnel (not carpal tunnel) in my right arm. I have to adapt to cope with it where I can't lean on it, sleep with my arm straight etc. And I have had tennis elbow twice which is a different problem but really just an aggravation.
My right elbow and hand have been bothering me recently - pain and tingling - and I have been stretching for the past few months and it hasn't helped much. I have had to cut back on the weights and exercises at the gym and spoke to the physical therapists there but it has been an increasing problem for me.
So when I was at my rheumatologist a few weeks ago, I mentioned to her that it had been acting up and she referred me to a hand surgeon to get an injection to help with the pain. When I saw her yesterday she told me:
My right elbow and hand have been bothering me recently - pain and tingling - and I have been stretching for the past few months and it hasn't helped much. I have had to cut back on the weights and exercises at the gym and spoke to the physical therapists there but it has been an increasing problem for me.
So when I was at my rheumatologist a few weeks ago, I mentioned to her that it had been acting up and she referred me to a hand surgeon to get an injection to help with the pain. When I saw her yesterday she told me:
- They don't do injections for elbow pain like mine anymore because it only seems to mask the pain.
- The pain in my elbow is the result of microtears in the tendon and I need to rest it, continue to modify my behaviors, use a wrist splint, get a special strap thingy, ice it, and be patient as it can take 2 months to 2 years to recover. (I have to talk to the physical therapist at the gym.)
- The tingling in my hand is not related to my elbow issues. Its coming from my neck. Which is where I have a bone spur. I already had PT for this two years ago. This is a real pain in my neck. The doctor's advice is to wait and see if it resolves itself.
Where is the good resolution I expected from my appointment yesterday? No where. It didn't happen. This is not unusual for me. I have to learn not to expect the magic wand of medical cures for me at any time.
Honestly, I think my body just likes getting revenge for all the years of torment I put it through - ice skating, skiing, hiking, roller blading, bike riding, etc. I had a lot of fun but I might have over done things from time to time.
Wednesday, June 20, 2018
At Least I Know Why I Am So Tired Today
I was exhausted when I got home yesterday. I had to lie down for a couple hours and then we got Chinese food delivered so I didn't have to cook. But I know why I was so tired.
Yesterday I had to go three banks and take care of some paperwork for my father's estate. I ended up standing for a total of about 1.25 hours. That was a very bad thing to do. I should never stand for any length of time. I will make it to the gym today but definitely will take it easy. And plan a few hours lying down to recover.
One of my big weaknesses is my inability to stand for any length of time. It makes my back hurt, and the pain can be exhausting. When I go to the gym and have arm exercises to do, I often walk in circles so that I am not standing. If I walk its better. This means sometimes I can actually go for a walk - like a walk on the beach.... occasionally, and then I have to rest for a couple days but I find walking on the beach can do wonderful things for me emotionally so I find its worth it.
But that standing thing is bad. I have to stop doing that.
Yesterday I had to go three banks and take care of some paperwork for my father's estate. I ended up standing for a total of about 1.25 hours. That was a very bad thing to do. I should never stand for any length of time. I will make it to the gym today but definitely will take it easy. And plan a few hours lying down to recover.
One of my big weaknesses is my inability to stand for any length of time. It makes my back hurt, and the pain can be exhausting. When I go to the gym and have arm exercises to do, I often walk in circles so that I am not standing. If I walk its better. This means sometimes I can actually go for a walk - like a walk on the beach.... occasionally, and then I have to rest for a couple days but I find walking on the beach can do wonderful things for me emotionally so I find its worth it.
But that standing thing is bad. I have to stop doing that.
Tuesday, June 19, 2018
10,000 Daily Steps Are Not Good
I know many people and have many family members who talk about and compare how many steps they do in a day. They are some 'stupid' idea that becomes a suggestion to get otherwise health Americans off their butts and move more. I am not an otherwise healthy American and I have no desire to count steps or know how many steps I take daily.
I never got one of those 'whatchamacallits' to count my steps for several reasons - mostly I can't wear a bracelet on my left hand because of my lymphedema (courtesy of breast cancer surgery) and I can't wear a bracelet on my right hand because of my RA.
I really do not care about how many steps I take unless I take too many.
First of all, my new phone actually has an app that automatically counts how many steps I take - provided I carry my phone with me. But I rarely carry my phone with me so I usually get totals of 1700 steps total for a day - my brother says he takes that many steps before he leaves for work. If I go to the gym, I bike for an hour but my back is nicely supported and it doesn't take too much out of me.
My doctors and I have a deal. I go to the gym three times a week and do my hour of cardio, nicely supported, followed by 45 minutes of stretching, range of motion work, and weights. Then I don't need to do much else. I do go out and garden at this time of year. Other times of year, I do try to get out and move around but not as much.
No, 10,000 daily steps won't help me get in shape or lose weight. What 10,000 daily steps means to me is: I did too much. That means I will need to spend a day or two recovering and taking it easy. So I don't really care about them.
I never got one of those 'whatchamacallits' to count my steps for several reasons - mostly I can't wear a bracelet on my left hand because of my lymphedema (courtesy of breast cancer surgery) and I can't wear a bracelet on my right hand because of my RA.
I really do not care about how many steps I take unless I take too many.
First of all, my new phone actually has an app that automatically counts how many steps I take - provided I carry my phone with me. But I rarely carry my phone with me so I usually get totals of 1700 steps total for a day - my brother says he takes that many steps before he leaves for work. If I go to the gym, I bike for an hour but my back is nicely supported and it doesn't take too much out of me.
My doctors and I have a deal. I go to the gym three times a week and do my hour of cardio, nicely supported, followed by 45 minutes of stretching, range of motion work, and weights. Then I don't need to do much else. I do go out and garden at this time of year. Other times of year, I do try to get out and move around but not as much.
No, 10,000 daily steps won't help me get in shape or lose weight. What 10,000 daily steps means to me is: I did too much. That means I will need to spend a day or two recovering and taking it easy. So I don't really care about them.
Monday, June 18, 2018
To the People Who Don't Get It
If someone you know has a chronic illness, you should take a minute to walk in their shoes. First of all:
- They are not able to rest today so they can do something exciting tomorrow. They are going to rest today and then again tomorrow because that is what they need to do.
- They are not going to get a miracle cure at their next doctor appointment (that is why it is called 'chronic'). Its a lifelong struggle.
- Their chronic ailments complicate everything - from grocery shopping, laundry, leaving the house, to medical tests and procedures, sitting, standing, walking, and lying down.
- They are not contagious (most of the time) so don't avoid or shun them.
- They are human beings and should not be written off. They still want to see and hear from people. They still want to do things. But maybe just at a slower rate or for a shorter period of time.
How would you be doing if all of a sudden you were living in a lot of pain and could never get comfortable, never mind sleep well? Or became dependent on multiple medications to be able to function as a semi normal human being? Or had to plan every second of your life to allow for rest between trips to the grocery store and the library? Or spent more time home alone because you were not able to go out and do things?
Think about it. And then call someone who has a chronic illness and just say 'hello'.
Sunday, June 17, 2018
My Life Has Changed
I used to blog all the time at Caroline's Breast Cancer Blog. I started it in 2007 when I was diagnosed with breast cancer. It helped me retain my sanity by blogging through cancer treatment - I got to vent about the ups and downs of cancer treatment.
Since then, my body has completely rebelled and I have accumulated multiple chronic ailments. I live a completely different life than I did 11 years ago. Now I feel like I just go to the doctor and the gym to help retain whatever health pieces I may still have.
I decided I need a new blog to write about my life because breast cancer is no longer the focus of my life. For the last few years I have felt I was straying from breast cancer, which was the title of my blog, when I did not write about life with breast cancer. Yes, Isurvived lived through breast cancer but its no the focus of my life so here I am at a new blog - Life with Chronic Illnesses - because that's what my life is all about.
Since then, my body has completely rebelled and I have accumulated multiple chronic ailments. I live a completely different life than I did 11 years ago. Now I feel like I just go to the doctor and the gym to help retain whatever health pieces I may still have.
I decided I need a new blog to write about my life because breast cancer is no longer the focus of my life. For the last few years I have felt I was straying from breast cancer, which was the title of my blog, when I did not write about life with breast cancer. Yes, I
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