I have excuses. I have chemo brain. I have fibro fog. But sometimes I am just plain stupid. This was one of those times.
We are on vacation (note to all the burglars - we have a house sitter and our neighbors know we are away and we don't have anything valuable anyway). Two weeks before we left I made a big project to make sure we had enough of prescription medications to get us through our trip. I checked all of the bottles, refilled a couple.
The day before we left, I went through and filled up our medicine boxes - daily ones - with enough pills to get us through. I carefully packed my break through pain pills. We then designated a little tote bag for all of our medical needs. The first tote was rejected because it was too small so we moved to a slightly larger one. This is serious business.
Then I packed up some over the counter medicines including some Emergen-Cs - you know the packets of vitamin C. I put those in the little zip pocket because they are flat. I put in Tylenol, Mucinex and all that kind of thing.
The next day I went and put elastic bands on the pill boxes so they would not pop open in transit. Then I put in the extra prescription bottles and double checked and triple checked. I had everything I needed.
As we went out the door I said to my husband the only thing that would get me to come back home would be if I forgot any medication. I told him that I had it all under control and had triple checked it twice.
We arrived on Sunday after driving 90 minutes (we are on the beach if you must know). Monday is pain patch change day. I am on Butrans pain patches - they last a week and provide a consistent dose of opiate medication to keep my pain all under control.
I went to get a replacement patch. THEY WEREN'T THERE!!! What I thought were replacement pain patches were the Emergen-Cs. Damn, triple damn, [insert all obscenities you know here].
Yesterday I went with plan A - taking my breakthrough pain tablets every four hours. It wasn't enough. At all. I didn't even tell my husband until last night. His first question was when was I going home to get them? I said I hadn't decided.
This morning I decided. I was in so much pain. I got in my car at 10am with the plan on going home and coming back by 2pm so I could enjoy the beach. While driving, I was trying to decide what didn't hurt. The answer was my right shoulder. [But now that is hurting too.]
I had to lie down for a couple hours before I could contemplate driving back. Now that I am back I am finally getting to blogging and have taken pain pills and am lying on an ice pack until I feel better.
I was really stupid.
PS The cat is royally pissed off at me. I left. He is not happy. He doesn't eat when I am not there. He will just have to suck it up until I get home.
Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts
Living with pain
Every day my morning starts with 'ouch', 'ow', 'owie', and more. And my husband looks at me and says are you sure you are are okay for whatever my day is planned. I say yes and suck it up. And maybe take a pain pill.
Yes, that's my life. I don't ask for pity. I cope. I take steps to work on my pain.
I have upped my arthritis medication and go back to my rheumatologist in July. I also have a 'procedure' (which involves sedation and lots of needles) on at the end of June which will alleviate a lot of back pain. I see my primary care (well her nurse practitioner becuase she will be on maternity leave) also in June where I will talk about my hand pain from the stupid (untreatable) ganglion cyst and my knees' general lack of cooperation with my desire to live a pain free life.
All those fancy pain medications you see advertised won't help me much. I have already tried the fancy ones for fibromyalgia and they haven't done much for me. And the other fancy medications, the biologics, for rheumatoid I can't take because of my cancer history, blah, blah, blah.
I am being honest here. I usually am honest in my blog but sometimes I elusively play with the truth and am not as open about some topics. What I do is I withhold the truth until I want to talk about things.
I mean living with pain is not like living with cancer or anything but it does kind of suck in a way. I do get all the good drugs.
But as I said before I am not asking for pity. And if I anyone says 'I'm sorry' to me about this post, I'll be sure to smack you silly next time I see you.
Yes, that's my life. I don't ask for pity. I cope. I take steps to work on my pain.
I have upped my arthritis medication and go back to my rheumatologist in July. I also have a 'procedure' (which involves sedation and lots of needles) on at the end of June which will alleviate a lot of back pain. I see my primary care (well her nurse practitioner becuase she will be on maternity leave) also in June where I will talk about my hand pain from the stupid (untreatable) ganglion cyst and my knees' general lack of cooperation with my desire to live a pain free life.
All those fancy pain medications you see advertised won't help me much. I have already tried the fancy ones for fibromyalgia and they haven't done much for me. And the other fancy medications, the biologics, for rheumatoid I can't take because of my cancer history, blah, blah, blah.
I am being honest here. I usually am honest in my blog but sometimes I elusively play with the truth and am not as open about some topics. What I do is I withhold the truth until I want to talk about things.
I mean living with pain is not like living with cancer or anything but it does kind of suck in a way. I do get all the good drugs.
But as I said before I am not asking for pity. And if I anyone says 'I'm sorry' to me about this post, I'll be sure to smack you silly next time I see you.
Over committed again
I am over committed again these days. Combined with a lot of back pain, it is not a lot of fun. We spent the weekend away (without a cell phone and survived) but that cut in to my work time.
I am working my one job, winding down my other job but do not have enough time to get everything finished and I have deadlines. I am also starting to do a little more volunteer work, and tomorrow is an annual event where I have to be there at 6 am - but its only ten minutes from home. I usually stay the whole day but this year they are going to be lucky to have me until lunch. Between back pain and other things I need to do, I am a little short on time and abilities.
Yesterday afternoon I spent was in a good deal of pain even though I took my pills. Silly me, I thought I could go for a walk after working for six hours.
Let's see how I do today. I bet I'll be on my way home by noon.
I am working my one job, winding down my other job but do not have enough time to get everything finished and I have deadlines. I am also starting to do a little more volunteer work, and tomorrow is an annual event where I have to be there at 6 am - but its only ten minutes from home. I usually stay the whole day but this year they are going to be lucky to have me until lunch. Between back pain and other things I need to do, I am a little short on time and abilities.
Yesterday afternoon I spent was in a good deal of pain even though I took my pills. Silly me, I thought I could go for a walk after working for six hours.
Let's see how I do today. I bet I'll be on my way home by noon.
Its been one of those weeks
I feel I have been somewhat introverted this week and pulling back a bit. I'm not sure why. I am doing okay. I have a fair amount of back pain these days and have moved up my appointment so that I can get some relief sooner as opposed to later. I have plenty of other aches and pains to boot.
I have been tired all week. I have been sleeping fairly well. But have frequently felt the need to nap.
I did have my annual mammogram this week which was a tiny bit stressful. Next year I will remember: If I feel something its nothing, if they find something its a problem. I felt something which turned out to be plain old body fat (of which I have plenty). But it allowed me to stress out for an hour or so.
I did purchase a new handbag last weekend for which I have received numerous compliments this week. I really like it and wanted a new purse and was just starting to look and found a Gucci bag at a yard sale for $5. I am not kidding. The previous owner bought it at Macy's and used it maybe two or three times and decided she didn't like it. Well now its mine and everyone seems to like it. So I guess that is good news.
My husband and I had an important conversation on an upcoming hotel reservation - refund for overpayment or upgrade to a suite? We opted for the suite provided it comes with a balcony. More on that later.
Today we have to clean for the cleaning lady. An arduous task but one that results in an amazingly clean house. I will suck it up with my aches and pains and take a pill and just push on through it.
I have been tired all week. I have been sleeping fairly well. But have frequently felt the need to nap.
I did have my annual mammogram this week which was a tiny bit stressful. Next year I will remember: If I feel something its nothing, if they find something its a problem. I felt something which turned out to be plain old body fat (of which I have plenty). But it allowed me to stress out for an hour or so.
I did purchase a new handbag last weekend for which I have received numerous compliments this week. I really like it and wanted a new purse and was just starting to look and found a Gucci bag at a yard sale for $5. I am not kidding. The previous owner bought it at Macy's and used it maybe two or three times and decided she didn't like it. Well now its mine and everyone seems to like it. So I guess that is good news.
My husband and I had an important conversation on an upcoming hotel reservation - refund for overpayment or upgrade to a suite? We opted for the suite provided it comes with a balcony. More on that later.
Today we have to clean for the cleaning lady. An arduous task but one that results in an amazingly clean house. I will suck it up with my aches and pains and take a pill and just push on through it.
If its not one thing, its another
Friday I noticed a little bump on the side of my wrist that appears to be on the end of one of the bones in my lower arm. It is solid and hurts. I had noticed some previous pain in the area but since I always have pain somewhere, I didn't really think about it.
Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.
I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.
Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.
I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.
The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.
Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.
I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.
Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.
I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.
The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.
Semi retirement
As a result of my health
It was a big decision that I really thought about. I had to choose which job to leave. I made my decision based on the fact that one job is completely 9-5 and the other job requires nights and weekends and running around town picking things up, delivering things, attending events.
I cannot go from one job to the other job as I used to. These days, after one job, I need a nap and to rest for a few hours before making dinner. If I overdo things, I am in pain for days. Pain makes me cranky. My husband hates it when I'm cranky. It also means he has to cook dinner more often han h e wants.
I have a month or so to go for this transition. I am happy to know that they do have replacements for me.One of my big concerns was how would the organization handle my leaving? I know I provide a lot of the day to day energy to it and without me, it could take a big hit.
It took two people to replace me but that is probably better for the Center in the long term. One person starts right around my official last day and the other one starts a few weeks later so I will be available to help with training and explaining so they Center can do well.
Some day I may be better enough so that I can go back to more work but for now I have decided this is what I need to do. I am not retiring, I am semi retiring where I will still work, but have more time for doctor appointments and naps.
What a tragedy yesterday in Boston
It was a normal Marathon Monday for me where I watch the wheelchair races and lead runners on TV and then move on to other things for the day. I did a little gardening and went to the gym. While I was at the gym, everyone started watching one of the TVs and started talking.
That was when the bombs had gone off. One woman, her son in law was at the finish line, was very concerned. I knew my sister and brother in law usually volunteer for the marathon - they were at the start line, not the finish line. I heard from two other friends who were about 200' away from the explosion giving water to runners when the first explosion went off. They are fine but stressed.
What a horrible thing that someone or some group did. What were they thinking? What was so important that they felt they had to get their messages out by destroying a family friendly event on a beautiful day? They killed three people, including an 8 year old, and injured over 140 - including two brothers who both lost a leg in the explosion.
There is no rhyme or reason for this. To whoever you are that did this, there is no punishment equal to this kind of crime. But I hope your conscience makes the rest of your life miserable.
That was when the bombs had gone off. One woman, her son in law was at the finish line, was very concerned. I knew my sister and brother in law usually volunteer for the marathon - they were at the start line, not the finish line. I heard from two other friends who were about 200' away from the explosion giving water to runners when the first explosion went off. They are fine but stressed.
What a horrible thing that someone or some group did. What were they thinking? What was so important that they felt they had to get their messages out by destroying a family friendly event on a beautiful day? They killed three people, including an 8 year old, and injured over 140 - including two brothers who both lost a leg in the explosion.
There is no rhyme or reason for this. To whoever you are that did this, there is no punishment equal to this kind of crime. But I hope your conscience makes the rest of your life miserable.
Want vs can
As I have been cutting back in my life, I have run into some misunderstandings. There are people who think that I am not doing as many things in my life due to the fact that I don't want to. But the reality is that I cant do everything I used to do.
I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.
I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.
Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.
So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.
I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.
I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.
Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.
So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.
One of those blog posts
This is my third try to write a blog post this morning. The first one was on quality of life post cancer treatment. The second one was on the s-word. The third one is on my day because I am not inspired to write about the first two.
Today is one of those days with a thousand things to do at home and around the house. My husband has a bigger list than me because I can't do all the things that need to be done. I am doing the laundry so I get points for that. And I will clean the kitchen in a bit so don't think I am lazy.
Last night we went out to dinner and got our desserts to go so we could eat it tonight. Well, I got on the phone with a friend and ended up eating my share of both desserts so I am feeling a little full this morning. I did eat some fruit and a yogurt but will find something more later on.
My back hates me again/still today. I take pain pills and suck it up. I could be cranky. But I'll skip that part for now.
Face it, I live a boring life and have no inspiration today at all..
Today is one of those days with a thousand things to do at home and around the house. My husband has a bigger list than me because I can't do all the things that need to be done. I am doing the laundry so I get points for that. And I will clean the kitchen in a bit so don't think I am lazy.
Last night we went out to dinner and got our desserts to go so we could eat it tonight. Well, I got on the phone with a friend and ended up eating my share of both desserts so I am feeling a little full this morning. I did eat some fruit and a yogurt but will find something more later on.
My back hates me again/still today. I take pain pills and suck it up. I could be cranky. But I'll skip that part for now.
Face it, I live a boring life and have no inspiration today at all..
Day by day
These days I live things day by day. What I mean by this is I plan to have a normal schedule and be the normal me (as much as I can be considered to be normal) and then I start making alterations to my schedule based on how I feel. Some days I keep my schedule and some days, I make short cuts, go home early and take naps.
Yesterday I was supposed to go out to dinner with family but I opted to stay home. I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.
This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?
I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.
Now I know, nap first, motivate later.
Yesterday I was supposed to go out to dinner with family but I opted to stay home. I was sore, tired, achy, and felt my pink fuzzy pajamas were calling my name. We stayed home and had tuna sandwiches for dinner and I went to bed early.
This week I am taking it easier than most. The accident did leave me some (additional) aches and pains which have slowed me down some more. I will see my primary care next week. I called her office to ask about my CT report and as soon as I said that I had been in an accident that brought me to the ER, they said of course she needed to see me. How about Tuesday at 1030?
I am learning, slowly of course - as I am not always quick on the uptake - that I have to make changes in my life. A few months ago, I would have pushed myself and then spent three days recovering. I used to over schedule myself frequently and now I do it less.
Now I know, nap first, motivate later.
I had a big adventure this weekend
This was not an an intentional adventure but an accidental one - literally. I will preface this by saying I am fine. But the car is not and is probably on its way to the big junkyard in the sky.
Saturday afternoon after returning from a luncheon, I decided to run out to the liquor store to get some wine to have with the curry I was cooking. I live in a neighborhood of small streets with a lot of intersections without stop signs. People often coast through them and assume that no one is coming, which is often the case as the roads are very quiet.
I turned off the main road and went one block up the steep curvy hill to turn left onto the two block long street which runs parallel to our street. 2/3 of the way down a road comes in on the right where the driver must turn left or right. I wasn't going more than 25 mph and all of a sudden there was a car in front of me turning right into the road. I tried to brake but bam.
All of a sudden the car was full of smoke from the air bag. (I repeat I am fine.) I got out of the car fast thinking it was on fire (because I am just so smart). I approached the other car and asked the woman if she was okay and if she could call the police because I didn't have my phone.
Two (wonderful) neighbors and spouses came out. One neighbor is a nurse and one is a dental hygienist. They gave me ice and towels for my bleeding lip. They let me use their phone to call my husband at home after they also called the police. The hygienist looked at my teeth because the air bag hit me in the mouth. She thought my teeth looked okay but suggested I get them checked out. The nurse also looked at me and said I should get checked out because of the airbag.
The police and fire department arrived and told me I should get checked out because of the airbag as well. They said that often injuries can be hidden because of the force of the airbag. They always recommend hospital trips when air bags deploy - standard protocol. I considered not going but then I decided I would be up worrying all night.
My husband arrived and held my hand and talked to the police. They were very nice as they put me on the 'comfy' backboard with big collar thingy. And away I went in the ambulance. They took the long way to the hospital so I got to spend more time sliding around the back board and saying ow at every bump.
About 15 minutes after I arrived at the ER my husband showed up. He had to take home the wine and beer and turn off the stove where I had left dinner simmering.
I got to wear the lovely collar for several hours. It was relatively uncomfortable but bearable once they got me off the back board. The doctor checked me out and wanted me to have a CT scan of my head and neck because I had pain in the back of my neck.
The doctor and nurses were all impressed with my lists: they needed to know - what medications I am on (7 daily prescriptions), previous surgeries (8 in all), and current medical ailments (RA, fibro, osteoporosis, cancer twice, degenerating back disks and more). They then switched from being impressed to the 'with your medical history, we need to be sure' mentality. They offered to send me home with pain meds but I thought I had plenty already.
It turns out I have arthritis in my neck and compressed discs as well. No wonder my neck hurts - now I have another topic for my rheumatologist next month. (But there were no brain abnormalities which means no sneaky brain mets - the hidden fear of all people who have ever had cancer.)
They finally let us go about four hours after we got there. I was happy to go home and have chocolate cake for dinner.
Of course I could not find my driver's license. My purse dumped out all over the floor of the car so I suspect it is there still. I will check today when I go to empty all the personal belongings out of the car. I also have to see if my glasses survived. I think the air bag knocked off my glasses and I didn't realize this until the ambulance was halfway to the hospital.
I also have to go to the police station and get the full accident report. I do not think I was at fault because I had right of way but you never know how these thing work out. Then I have to fill in my report online and call the insurance company.
Once I am done with all my paperwork, I might get some work done and then go to the gym to work out some of the stiffness. I am a little stiff but not horribly. I also take some heavy pain meds every day so who knows how I would really be feeling if I wasn't taking them.
Saturday afternoon after returning from a luncheon, I decided to run out to the liquor store to get some wine to have with the curry I was cooking. I live in a neighborhood of small streets with a lot of intersections without stop signs. People often coast through them and assume that no one is coming, which is often the case as the roads are very quiet.
I turned off the main road and went one block up the steep curvy hill to turn left onto the two block long street which runs parallel to our street. 2/3 of the way down a road comes in on the right where the driver must turn left or right. I wasn't going more than 25 mph and all of a sudden there was a car in front of me turning right into the road. I tried to brake but bam.
All of a sudden the car was full of smoke from the air bag. (I repeat I am fine.) I got out of the car fast thinking it was on fire (because I am just so smart). I approached the other car and asked the woman if she was okay and if she could call the police because I didn't have my phone.
Two (wonderful) neighbors and spouses came out. One neighbor is a nurse and one is a dental hygienist. They gave me ice and towels for my bleeding lip. They let me use their phone to call my husband at home after they also called the police. The hygienist looked at my teeth because the air bag hit me in the mouth. She thought my teeth looked okay but suggested I get them checked out. The nurse also looked at me and said I should get checked out because of the airbag.
The police and fire department arrived and told me I should get checked out because of the airbag as well. They said that often injuries can be hidden because of the force of the airbag. They always recommend hospital trips when air bags deploy - standard protocol. I considered not going but then I decided I would be up worrying all night.
My husband arrived and held my hand and talked to the police. They were very nice as they put me on the 'comfy' backboard with big collar thingy. And away I went in the ambulance. They took the long way to the hospital so I got to spend more time sliding around the back board and saying ow at every bump.
About 15 minutes after I arrived at the ER my husband showed up. He had to take home the wine and beer and turn off the stove where I had left dinner simmering.
I got to wear the lovely collar for several hours. It was relatively uncomfortable but bearable once they got me off the back board. The doctor checked me out and wanted me to have a CT scan of my head and neck because I had pain in the back of my neck.
The doctor and nurses were all impressed with my lists: they needed to know - what medications I am on (7 daily prescriptions), previous surgeries (8 in all), and current medical ailments (RA, fibro, osteoporosis, cancer twice, degenerating back disks and more). They then switched from being impressed to the 'with your medical history, we need to be sure' mentality. They offered to send me home with pain meds but I thought I had plenty already.
It turns out I have arthritis in my neck and compressed discs as well. No wonder my neck hurts - now I have another topic for my rheumatologist next month. (But there were no brain abnormalities which means no sneaky brain mets - the hidden fear of all people who have ever had cancer.)
They finally let us go about four hours after we got there. I was happy to go home and have chocolate cake for dinner.
Of course I could not find my driver's license. My purse dumped out all over the floor of the car so I suspect it is there still. I will check today when I go to empty all the personal belongings out of the car. I also have to see if my glasses survived. I think the air bag knocked off my glasses and I didn't realize this until the ambulance was halfway to the hospital.
I also have to go to the police station and get the full accident report. I do not think I was at fault because I had right of way but you never know how these thing work out. Then I have to fill in my report online and call the insurance company.
Once I am done with all my paperwork, I might get some work done and then go to the gym to work out some of the stiffness. I am a little stiff but not horribly. I also take some heavy pain meds every day so who knows how I would really be feeling if I wasn't taking them.
I need to widen my interests
Yesterday I went to a luncheon sponsored by the New England Coalition for Cancer Survivorship with a friend. She has had breast cancer and remarked when we arrived that she wasn't used to seeing men at cancer events. Breast cancer events are mostly filled with pink clad women.
The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.
However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.
There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.
I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).
So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.
The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.
However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.
There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.
I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).
So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.
Recovering after a very long week
In the past months, six or so, my energy levels are significantly down. I need to make sure I have enough down time and time to stay home and do nothing. I can tire myself out quite easily and then pay the price for days.
I had a three day work week this week but am exhausted. I tried to sleep late this morning but the cat sat on me because he wants food and the sun was streaming in from the room across the hall. Note to self evict the cat and close the other shades. I will try again tomorrow.
Emotionally and physically it was a tough week. I came back home after a 380 mile to visit my brother on Monday. Tuesday was another 2" (which turned into 10") snow storm that kept my husband and I home for the day. We reassembled the (damn) dryer after my husband's minor repair. I got a fair amount of work done as well. I even snuck out to the gym in a lull in the storm.
Wednesday, Thursday, and Friday I went to work for six hours each. Wednesday I hit the grocery store on the way home, Thursday I met a friend for a walk, and Friday I went to the gym. Thursday night I was so tired and in so much pain in my feet and hips, I got in bed at 430, PJs by 6 and my husband cooked dinner which I ate in bed. I was exhausted on Friday morning.
Today I have a lunch to go to and am organizing a volunteer event that I won't attend. I am not attending because of pain and fatigue. Well guilt might get me to stop by for a few minutes.
That's just the physical side.
I also found out this week a breast cancer friend is facing a recurrence. We do not know details yet but the words chemo, radiation, and hospitalization have been bandied about. I will try to call her today. One friend talked to her and said she was really out of it but is still perky.
Another online friend passed away after a long fight with cancer. I have never met her but she was one of those people who was incredibly supportive to others in their copings with cancer. Dying way to young, younger than me.
Finally an old friend's husband with stage IV colon cancer has progression in his disease despite treatment.
I hope next week is better. My goal is to get a lot of sleep tonight and rest tomorrow. I also am home on Monday where I can take it easy then as well. The cat will have to learn to let me sleep in.
I had a three day work week this week but am exhausted. I tried to sleep late this morning but the cat sat on me because he wants food and the sun was streaming in from the room across the hall. Note to self evict the cat and close the other shades. I will try again tomorrow.
Emotionally and physically it was a tough week. I came back home after a 380 mile to visit my brother on Monday. Tuesday was another 2" (which turned into 10") snow storm that kept my husband and I home for the day. We reassembled the (damn) dryer after my husband's minor repair. I got a fair amount of work done as well. I even snuck out to the gym in a lull in the storm.
Wednesday, Thursday, and Friday I went to work for six hours each. Wednesday I hit the grocery store on the way home, Thursday I met a friend for a walk, and Friday I went to the gym. Thursday night I was so tired and in so much pain in my feet and hips, I got in bed at 430, PJs by 6 and my husband cooked dinner which I ate in bed. I was exhausted on Friday morning.
Today I have a lunch to go to and am organizing a volunteer event that I won't attend. I am not attending because of pain and fatigue. Well guilt might get me to stop by for a few minutes.
That's just the physical side.
I also found out this week a breast cancer friend is facing a recurrence. We do not know details yet but the words chemo, radiation, and hospitalization have been bandied about. I will try to call her today. One friend talked to her and said she was really out of it but is still perky.
Another online friend passed away after a long fight with cancer. I have never met her but she was one of those people who was incredibly supportive to others in their copings with cancer. Dying way to young, younger than me.
Finally an old friend's husband with stage IV colon cancer has progression in his disease despite treatment.
I hope next week is better. My goal is to get a lot of sleep tonight and rest tomorrow. I also am home on Monday where I can take it easy then as well. The cat will have to learn to let me sleep in.
An Experiment
Today I am experimenting. I am going on a road trip to visit my brother and his family 350 miles away. This is an experiment because my recent health issues make me tired, cranky, and in pain often. I am not sure how I will physically feel when I get there. (And for all you would be burglars out there, my husband will be staying home and will be protected by the cat in my absence.
I am sure I will be tired when I get there but it is important I see if I can. Its sort of a test for me. If it is successful, I will go on vacation this summer with a friend and visit Misty of Chincoteague which is a much farther drive. Its probably 500 miles and we will have to avoid New York City. (Yes we know Misty is no longer alive but I am sure her great-great-great-great-great-great grandchildren will be there and we can see all the other ponies.)
I also have a car load of stuff which my husband packed to bring to my brother. My little car is full of:
I will report back on how I do with my experiment. In the last six months I have cut back on a lot of things that I do so this is a real test on how real my limitations are.
I am sure I will be tired when I get there but it is important I see if I can. Its sort of a test for me. If it is successful, I will go on vacation this summer with a friend and visit Misty of Chincoteague which is a much farther drive. Its probably 500 miles and we will have to avoid New York City. (Yes we know Misty is no longer alive but I am sure her great-great-great-great-great-great grandchildren will be there and we can see all the other ponies.)
I also have a car load of stuff which my husband packed to bring to my brother. My little car is full of:
- a vacuum cleaner & extra bags
- two table lamps
- a 9x12 area rug
- a kitchen table
- a folding book case
- a TV
- a suitcase
- me
I will report back on how I do with my experiment. In the last six months I have cut back on a lot of things that I do so this is a real test on how real my limitations are.
Semi retirement
I have decided my life has entered a phase of semi-retirement. Now this may change in the future if my RA will get under control and my fibro decides to go away or some other miracle occurs. This means I have cut back on many things that I do.
I no longer mind playing the wimp. I need to take my husband's computer to the repair shop because he got an evil virus which tells him the FBI wants him and they really don't (or at least not that we know). My husband will put the computer in the car this morning. I will drive over and double park out front and go in and tell them I need assistance getting it out of the car - waving my arm with my wrist splint on it. I used to suck it up and try to carrying things I probably shouldn't.
I have become a firm believer in PJs at 5pm. And if my husband can be 'persuaded' to cook dinner while I can be lazy.
I am no longer a supporter of the 35-40 hour work week. I support the 18 hour work week plus a few hours if I am able.
I no longer believe evenings are good for social events and activities. Weekends are just fine. I can't get in my PJs at 5 if I have to go out later.
Why am I semi-retiring? Because I need my nap time. Today I am being lazy. I have a dr apt at 945 and them am getting my nails done at 11. I also have to drop off the computer, go to the book store, and have a webinar from home, but that is plenty for today. I am exhausted this morning and I slept well last night.
We had dinner guests Saturday night (take out Chinese) and a pot luck brunch on Sunday. Monday I worked for my requisite 6 hours and met a friend for a walk. Yesterday I worked my 6 hours and went to the gym for probably 75% of my work out. Then I ran an hour meeting. I got home and needed to go to bed. I was wiped out.
My goal by the end of today is that I am recovered and revived but it will take a lot of quiet time.
My long term goal is to get my RA under control and my fibro managed so I can resume having a social life. But for that I will have to be the patient patient.
I no longer mind playing the wimp. I need to take my husband's computer to the repair shop because he got an evil virus which tells him the FBI wants him and they really don't (or at least not that we know). My husband will put the computer in the car this morning. I will drive over and double park out front and go in and tell them I need assistance getting it out of the car - waving my arm with my wrist splint on it. I used to suck it up and try to carrying things I probably shouldn't.
I have become a firm believer in PJs at 5pm. And if my husband can be 'persuaded' to cook dinner while I can be lazy.
I am no longer a supporter of the 35-40 hour work week. I support the 18 hour work week plus a few hours if I am able.
I no longer believe evenings are good for social events and activities. Weekends are just fine. I can't get in my PJs at 5 if I have to go out later.
Why am I semi-retiring? Because I need my nap time. Today I am being lazy. I have a dr apt at 945 and them am getting my nails done at 11. I also have to drop off the computer, go to the book store, and have a webinar from home, but that is plenty for today. I am exhausted this morning and I slept well last night.
We had dinner guests Saturday night (take out Chinese) and a pot luck brunch on Sunday. Monday I worked for my requisite 6 hours and met a friend for a walk. Yesterday I worked my 6 hours and went to the gym for probably 75% of my work out. Then I ran an hour meeting. I got home and needed to go to bed. I was wiped out.
My goal by the end of today is that I am recovered and revived but it will take a lot of quiet time.
My long term goal is to get my RA under control and my fibro managed so I can resume having a social life. But for that I will have to be the patient patient.
Fibro what?
So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.
Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.
Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!
So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:
But otherwise I am a very healthy person.
Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.
Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!
So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:
- "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
- The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
- More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
- Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
- Fatigue, night sweats and sleep disturbances.
- Memory difficulties and cognitive difficulties.
- Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
- Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
- Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
- Hearing, vision, and vestibular (balance) abnormalities.
- Heartburn, palpitations and irritable bowel syndrome.
- Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
- Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "
But otherwise I am a very healthy person.
Life is a verb
Every week at work, we get take out for lunch. Its our little splurge and relieves lunch boredom. We don't get anything fancy - any local restaurant will do from salads, pizza, Chinese, Vietnamese, deli, etc. Each week we start our little discussion on where to get lunch around 830am. Some people think that is a little early to start thinking about what I consider to be the best part of the workday, but some of us think that's right on time.
Our current favorite is a little Vietnamese place. We each have a favorite dish. And it comes with fortune cookies. Go figure. I didn't think the had Chinese fortune cookies in China, let alone in Vietnam. But this is my cookie from the last time we ate there.
I do believe life is a verb, as in an action word. You can't sit still because life will pass you by. But when I try to be active, I pay the price the next day.
I go to the gym three times a week, usually Monday, Wednesday, and Fridays. Yesterday I went after work. Today I am very sore in all the usual places and then some. Every three months at the gym, I am entitled to a free session with a trainer to tweak my work out.
Last time we cut it way down because my rheumatoid drugs had yet to kick in. She wanted me to up the cardio from two sessions of 20 minutes each, to each session of 25 or more minutes each.I have done this so I am closer to an hour of cardio three times a week which is a good thing.
We also cut back the number of machines and free weight sets I do to have of what it was, but we increased the reps on the few that were left. She said try 20-25 reps and one or two sets. This has been working but if I get ambitious and try to do more, I spend the next day paying the price.
My hands are not as sore as they were but other body parts hurt more. I think the RA meds might finally be kicking in but that leaves me with fibro pain, which is way more 'fun'.
But I will continually to be active in my life and not sit idly and let it pass me by.
Weekend recovery
Most people use the weekend to recover from their work week. Today I am recovering from my weekend. My husband only got mad at me a few times for doing too much (because he says when I overdo things I have a tendency to be cranky and he would prefer me uncranky) and today I am paying the price.
Friday it snowed. A lot (in case you have been living under a rock and didn't notice). I went to the gym, my therapist, and made brownies and fish chowder. And did some work. Saturday I did a little work, peeled some wall paper, went out on my snow shoes (just on our street - I wasn't stupid and went off in the woods or anything) and took pictures of all the snow.And did some knitting.
Sunday I peeled more wall paper, helped with more shoveling - meaning I cleaned off both cars and started them and got one out of the driveway. The other required a lot more excavation.
Then we went to help a friend get her car out of long term parking where it had sat during the entire storm. She just needed a little push from my husband but had been very concerned about how much digging might be needed. We got a take out for dinner and I went to bed early.
While driving around we were amazed at how narrow the streets are, how big the snow drifts, and how much snow in general there really is.
This morning, both arms are very sore, and my back. And in general I feel like I was run over by a truck. I will take it easy for a bit. The contractor who was here last week is coming to get his tools out of the basement but I have no idea how he will get them up these stairs and across the lawn which is buried in snow.
Then I will drag my battered body to the gym and home again. I have to get some work done today but it will involve a lot of sitting around.
Our neighbor was an absolutely life saver as he went around with his bob cat widening the road on Saturday afternoon and then helping clear driveway openings on Sunday for the five houses on the street.
Then we went to help a friend get her car out of long term parking where it had sat during the entire storm. She just needed a little push from my husband but had been very concerned about how much digging might be needed. We got a take out for dinner and I went to bed early.
While driving around we were amazed at how narrow the streets are, how big the snow drifts, and how much snow in general there really is.
Then I will drag my battered body to the gym and home again. I have to get some work done today but it will involve a lot of sitting around.
Medical research can do nothing
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing.
"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"
And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)
Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.
They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.
Yesterday was a bad day
I did not accomplish much. I did not sleep well two nights in a row. My brain was in a fog all day. I tried to get some work done but did not feel I had enough functioning brain cells to get much done. I was also supposed to give a presentation 20 minutes away but it snowed so I cancelled.
I also had a fair amount of pain so I might have been cranky. There was a contractor here for a good part of the day removing some wood where we have some rot and found an carpenter ants nest. I hate those things. We have had a chronic problem with ants since we moved in. We had a pest inspection before we moved in and they found one dead ant and signs of mice. We have a mouse terminator (a/k/a a cat) and thought we were fine. Then the ants started to show up. We could never find the source so we think we just did. The exterminator is due here in half an hour. Then the contractor will return as will the banging noises of construction. The cat and I will hide upstairs.
Last night I did get some sleep. While I don't feel 100% I do feel human for the most part - there might be some cranky pain filled b*tch buried inside. But I will accomplish work today and I will even get my lazy butt to the gym this afternoon. And maybe even cook dinner. Last night we had someone bring us pizza (in a snowstorm which is mean we know, but we did give him a good tip). I have slice mushrooms, chicken, and some brown rice so I will compile something.
Yesterday was such a bad day, when I called into work to say that I was planning on staying home today, they told me at work I sounded like crap. My husband made fun of the way I talked. Today can only be better.
I also had a fair amount of pain so I might have been cranky. There was a contractor here for a good part of the day removing some wood where we have some rot and found an carpenter ants nest. I hate those things. We have had a chronic problem with ants since we moved in. We had a pest inspection before we moved in and they found one dead ant and signs of mice. We have a mouse terminator (a/k/a a cat) and thought we were fine. Then the ants started to show up. We could never find the source so we think we just did. The exterminator is due here in half an hour. Then the contractor will return as will the banging noises of construction. The cat and I will hide upstairs.
Last night I did get some sleep. While I don't feel 100% I do feel human for the most part - there might be some cranky pain filled b*tch buried inside. But I will accomplish work today and I will even get my lazy butt to the gym this afternoon. And maybe even cook dinner. Last night we had someone bring us pizza (in a snowstorm which is mean we know, but we did give him a good tip). I have slice mushrooms, chicken, and some brown rice so I will compile something.
Yesterday was such a bad day, when I called into work to say that I was planning on staying home today, they told me at work I sounded like crap. My husband made fun of the way I talked. Today can only be better.
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