The contents of this blog are copyrighted to the author, Missy (unless otherwise noted) and may not be used, reprinted, published or in any way copied without written permission of the author.

The medical information contained in this blog (when it appears) is not intended to provide medical advice of any kind. Any medical topics discussed here are as they pertain to the author and her conditions only. Do not make any changes to your medications, treatments, etc. without speaking to your personal physician first.

Friday, April 30, 2010

A death in the family

I just wanted to drop a quick note and let everyone know that I will be away for the next week or so. My DH's aunt passed away and we are going to attend the funeral in Indiana. We will be leaving tomorrow morning and driving there.

We will also be bringing my DD's belongings with us to drop off in Wisconsin (6 hours from my FIL's house) for her. Today is going to be a busy day getting everything all packed. We were planning on going to Indiana to visit family and bring DD's stuff to her next month anyway, this just pushed it up a couple weeks.

If I can manage to get online while we are in Indiana, I will try to post a quick hello, but I can't promise. I will, of course, be bringing my stitching with me and I might even get some done, who knows. LOL

See you next week!

Friday, April 23, 2010

Not surprised and Busy Day!

I thought this was hilarious. I know I have an odd name and it is very rare. I've never been able to find anything with my name already on it. You know like cups, pencils, key chains or stuff like that. Occasionally I can find my nickname, but not my real first name. I came across a link to "How many of me" are there and out of curiosity I clicked the link and put my name in. Apparently there is only 1 person in the USA that has my full name (first and last) and I'll bet that single person is myself. LOL There are supposedly 1545 or so who have my first name, and 47,728 who have my last name. I found it very funny that there is no one else in the USA with my full name. I wasn't surprised either as I am quite used to having an unusual name LOL
LogoThere are
or fewer people with my name in the U.S.A.
How many have your name?

I'm still giggling over this. LOL

Well today has been a busy day. Right now my pain is at a 9 and I will be taking a nap after I finish this entry. Lets see I did lots of laundry, washed , dried, folded and put away. This included 3 blankets (2 queen size and 1 twin size), 1 lap blanket, and 6 sheets (5 queen size, 1 twin and 1 crib size). I emptied all the small trash baskets and replaced their bags (wal-mart bags come in handy for these LOL) and Bridgette insisted on helping me carry the larger bag I dumped them all into around to each trash can then out to the trash can outside. I took in all of Bridgette's new pants, shorts, skirts etc as we had to buy size 4T for her height, yet she is so skinny she fits in a 3T. So I took all the bottoms in a little bit. I went over all my son's math work and found that he hadn't done the things he told me he had done, so today has been a math marathon for him to make him do everything he skipped. I did some picking up in the kitchen and my bedroom.

A few days ago I went back on the cross stitch forum that I loved so much. When my depression got really bad after my adopted father's funeral last summer, I withdrew from everything. No boards, email lists, or blog entries. Now that I have been doing so well in keeping up with my email lists, facebook and blogs I decided it was time to add that posting board back in. I really like the people on the board, they are so friendly, supportive and just wonderful. I was a bit nervous as to how they would react to my having been gone for so long, but no one seemed angry. Instead they were all very warm and happy to see me back again! They were very understanding of my depression and how it affected me. I am really glad!

Ok time to go lay down, sitting here hurts too much.

Wednesday, April 14, 2010

Screw The Pain

Today I decided to say "F*** the pain!" and do some chores anyway. I emptied trash (bathroom, laundry room, kitchen, and bedroom), cleaned the litter boxes (6 cats dontcha know LOL), put away a box of my biological mother's journals, cleared a shelf in the hallway closet and put our extra blankets on them to get them out of the laundry room, picked up the books off the floor on my side of the bed and took a one hour nap. I still feel really tired, which is not surprising since I haven't been sleeping well. I keep waking up every hour or two, then I'm up for anywhere from 15 minutes to an hour before going back to sleep only to wake up an hour or two later. I've been doing this every night for the past couple of weeks. It is really getting annoying and causing me to feel tired all the time. Eventually I will hit a point where I sleep for 8 or more hours from pure exhaustion. I'm just hoping that when that finally happens, it will happen at night. In an attempt to try to make it happen at night (instead of during the day) and thus help straighten out my sleeping schedule, I am refusing to lay down even though I am sleepy. When I finish this entry I'm going to go work on the Christmas Dreams cross stitch. Because it is on 14 count Aida fabric, with large blocks of one color, it is easier to stitch when I am tired, hurting, or both (like tonight).

Right now my pain is at a 7 with sciatica going down my left leg, deep throbbing in the broken joint and a sharp pain at the top of the joint on both sides and my lower back. But my mood is real good, which is nice. I got some stuff done today, including taking my son a doctor appointment. Having that feeling of accomplishment (no matter how minor the tasks were) feels great and I am enjoying it.

Ron and I have been doing something daily that we don't do often. Not the he doesn't want to do it often, but I usually don't because of what I went through when I lived in Arizona. I used to love to cuddle up, laying my head on my partner's shoulder and just cuddle. I used to love to fall asleep that way, though I couldn't stay asleep that way for long because it gets too warm. But I learned to not want to cuddle like that anymore after being repeatedly told that it was smothering, overly needy etc. So I've been working on trying not to smother that desire and to act on it when it shows up. As time has gone on the desire to cuddle like that shows up more often and I no longer worry that Ron will resent it or me which is really nice. So we've been cuddling a lot the last few days and it just feels wonderful! Last night we were cuddling and I fell asleep. Sadly I was on my left side, which is not a good way for me to lay down and is partly why the SI joint hurts so much today. So tonight he will lay on my side of the bed so I can cuddle up while laying on my right side and I am really looking forward to it!

Ron brought home watermelon so we've all been eating it. Bridgette loves to sit on my lap and help me eat my fruit (fwoot as she says it lol). She will eat a piece herself, then spear me one with the fork and feed me. She'll even tell me I'm doing a good job and that it is yummy for my tummy, basically repeating what we say to her. It is so very cute and so very sweet!

Well that's it for my day, so I'm going to go stitch for a bit. See you all later!

Saturday, April 10, 2010

Laughter is the best medicine

My back pain has continued to be pretty high these past two weeks and the cold (or whatever it is) has returned. I woke up this morning with a lot of back pain to find that my ears were blocked again, my sinuses are congested and I just feel achy all over.

Yesterday I did dishes and then lay down to take a nap. I was hurting when I finished the dishes and figured I would sleep for only an hour or two. It was 2:30pm when I lay down. I was very shocked when I woke up to find out it was 11:30pm! Ron said he tried to wake me up but I kept asking him to let me sleep, so he did. He figured I needed the rest because I had been struggling with insomnia for the last two weeks. Between being sick and increased back pain my sleeping schedule was all screwed up. Since I woke up at 11:30pm I figured I would be up all night, but by 4AM I was ready to go back to sleep, which I did and I slept until 11 AM or so. Thanks to the cold coming back I spent most of the day feeling sleepy despite all the sleep I had gotten.

The last two weeks have also seen a comeback of my depression. I know it was mostly because my pain is higher than usual and I was sick on top of it, so I couldn't get much done. I recognized that I was feeling down and apathetic again pretty quickly. I see that as a good thing because the quicker I recognize it, the quicker I can do something about it. It was because of my recognizing my down mood that I made myself do the dishes yesterday, take a shower today, stitch today, and do some general picking up around the house. I also focused on playing with my niece, son and sister-in-law. We all sat on the living room floor and played with Bridgette's new ball (it is a very large blue ball). I remembered an old game from when I was a kid and started singing "The magic ball, goes round and round etc. etc." and turned a simple game of catch into a game of magic ball. Bridgette loves music and she had a blast. After that we did the hokey pokey, the chicken dance, and played London Bridge and duck duck goose. The four of us were laughing the whole time and just having a blast! It was a lot of fun! I had to stop after duck duck goose as my back was really unhappy, but I don't care about the pain. The shower, stitching by myself, stitching with Bridgette, then playing games with Bridgette, Kyle, and Stephanie were all very much worth the increase in pain. I feel more emotionally and mentally awake and happy than I have for the last 2 weeks. Feeling this way is definitely worth my pain being at a 9. While we were playing and laughing I didn't notice the pain as much either. Laughter really is the best medicine! It can lift your mood, brighten the whole day, and decrease pain by releasing endorphins and adrenaline into the blood stream.

Depression is difficult because even with the medication's help, I still need to consciously fight it. I have to repeatedly pull myself out of the "blah" hole I find myself in occasionally. The Pristiq is still helping me a great deal, but like chronic pain, depression has its ups and downs.  With the medicine though, it is easier for me to pull myself out of a funk. It is also easier for me to notice those times when I get down.

Most of what was going through my head was how many things I used to do on a regular basis, that I can no longer do. These thoughts start a vicious cycle in my head that causes me to feel overwhelmed, useless, and erases my desire to do anything at all. I really hate having to constantly fight depression and pain just to function on a daily basis. It gets frustrating. But I will continue to fight it because if I don't, then I will have let myself down and let the pain & depression win. They are not allowed to win!

I may not be able to do as many things as I used to do, but that doesn't mean I am useless, worthless, or anything like that. I am still me. I am still a good person and there are a lot of things in my life that are good. To let the two bad things take over would be unfair to myself and those who love me. So I will keep fighting. I will keep doing my best to live my life the best I can.

Well Bridgette has gone to bed so that means I can go to bed and stitch some more, YAY! Talk to you all later!

Wednesday, April 7, 2010

Having someone who gets it

Last night was not a good night with my back. The pain started ramping up around 12:30AM. This caused a sleepless night. After a few hours I left the bedroom (3:30 or so AM) to come read blogs as a way of distracting myself. I am currently (8:08AM) at an 8.

When I find a blog I really like, written by someone who is in a situation that sounds so similar to my own, I end up going back to the first post and reading every post on the blog. In some cases this can take a few days, in others only a couple hours, depending on how old the blog is and how frequently the author posts.

Anyway, while reading I was struggling with nausea due to my breakthrough medications. I piled pillows behind me in my chair to hold the ice pack in just the right spot on my left SI joint and forced myself to focus on every word I was reading. Every time a thought such as "ohgod I hurt" surfaced in my mind, I deliberately forced myself to think of something else like my daughter's smile, my son's sleeping face (for some reason he is asleep on my recliner LOL) or my niece's giggles. Doing this did not stop the pain in any way, but it did keep me from focusing on it which does help control it somewhat.

I kept reading and purposely distracting my mind as needed for the last 4 hours. I heard my husband Ron's alarm go off, then him moving around the bedroom getting ready to go to work. He opened the bedroom door (which is right beside my computer desk) took one look at me and told me to not worry about housework or chores today, to just rest and take it easy.

One look. That was all it took and he gets it. No anger or resentment, just an honest desire to see me feel better. He then gave me a kiss, told me he loved me and left for work.

That one look, followed by full understanding, it is truly priceless for someone who lives with chronic pain.

Is it any wonder that this man means the world to me?

Tuesday, April 6, 2010

Distraction is a cure?

I have read many articles online and in print about chronic pain. Some were written by doctors, some by social workers or therapists, some by journalists. I have also read blogs written by people who live with chronic pain. Sooner or later the topic of distraction shows up.

What amazed me was this one article was posted with a title that misrepresented the contents of the article.The title is "The Most Powerful Pain Reliever Revealed". It made it sound like someone had found a cure for chronic pain, yet when you read the article it simply states that distracting yourself cures pain. The example it gave was not one of distraction, it was one of a person in full fight or flight mode, full survival mode complete with a major adrenalin rush. The example was of a woman going back into her burning house to save her cat from death and not noticing that she sustained 2nd and 3rd degree burns while doing so. It used this example as proof that by being distracted one doesn't feel pain. It was a doctor who posted this article. You can find the article and the comments generated here.

The responses to this article ran the gamut from agreeing that distraction works in controlling pain, to anger that anyone could think that such a life and death situation counts as mere distraction.

There were a few things that bothered me when I read this article. First, the title. I agree with the opinions stated that the title was in fact misleading. It is misleading. When I read the title, had I not known better, I may have felt hope that finally something to truly help me had been discovered. I may have felt that finally I might have a chance at leading a more normal and active life with little or no pain. Luckily, I knew that there is no miracle cure for pain so I did not feel those things. What I felt was curiosity and wondered what wonderful so called powerful thing the author would espouse as such a great treatment for pain.

Second, the example provided in the article really bothered me. I agree that the example provided is not one of distraction. It is, in fact, one of a person in full survival mode. Science has shown that when a person is put into a position by a life threatening emergency that their body goes into fight or flight, survival mode. To do this, non-necessary bodily functions shut down such as digestion. The brain sends commands to increase adrenalin and endorphins and these chemicals are released into the blood stream in large quantities. These chemicals cause many different physical responses, but one of them is the inability to feel pain or the dulling of pain so it is easily ignored while the brain is focused on surviving the situation. You can find many examples of people ignoring serious painful injuries while in a situation that could have easily taken their lives. There is a difference between being distracted and being mind-locked into truly surviving when your life is threatened.

Distracting yourself through hobbies or other activities does not cause the body to dump massive amounts of adrenalin and endorphins into the blood stream. It can cause some release of these chemicals, such as during sex, but it rarely happens with fairly sedentary activities such as reading, or other hobbies. Hobbies such as running (marathoners often experience "runner's high", which is a result of such adrenalin and endorphin release into the bloodstream) may cause these chemicals to be released but not many severe chronic pain patients can run or do marathons. They simply hurt too much and the cost of such activities in increased pain is just too high.

Thirdly, the response of the doctor who posted the article to the comments really bothered me as well. The people who posted positive things about how distracting themselves with hobbies can provide some relief of pain were praised as survivors, having heart, being beautiful and other positive things. Whereas the ones responding with anger or disbelief were judged as having "negative thought viruses" and worse. The doctor who posted the article states she has lived with chronic pain for 10 years, at the time the article was posted. I understand that this person has obviously chosen to try to stay as upbeat and positive as she possibly can and that is fine. But to be so derogatory towards those who took offense with the way the article was presented was exclusionary and wrong. To hold those people who commented only with positive things up as "survivors" and beautiful people, to lord them over the ones who were angry at being mislead and then belittled is very wrong in my opinion. Especially from a doctor. Chronic pain patients get mistreated and misunderstood by doctors far too often as it is. We are judged as drug addicts, drug seekers, attention seekers, as having mental illnesses and worse, far more often than we are believed when we describe our pain. For most of us it takes years to get a doctor to listen to us and start exploring possible reasons for our pain. For those who are harder to diagnosis, they often have to see many different doctors over periods of years to finally get one who will seek an answer and then treat them even a little bit. Even after having a diagnosis (or more than one) of a condition that causes severe pain, we are still seen as weak, drug seeking addicts who just want attention and dismissed by many doctors because we can't be easily "cured". To have another doctor, publishing articles that just add another reason to dismiss chronic pain patients as weak minded is, in my opinion, counter productive and wrong.

Many chronic pain patients try very hard to stay on the positive side. To see the little things in their lives that are still good, the things that make it worth getting out of bed every day. But they also have every right to be upset, offended, and angry when an article such as this one is presented as the cure to chronic pain.

Distraction is not a cure, nor does it give the same physical response as a life and death situation. Distraction merely takes the conscious mind and focuses it on something other than the pain your body is feeling. It does not make the pain go away, nor does it really lessen the pain. It just shifts your focus so the pain becomes secondary to whatever you are focusing on, but you still feel the pain. And when the pain gets bad enough, it distracts you from whatever you are doing, it takes over your mind.

I agree that the mind is a wonderful tool that can be utilized to help one control their pain in different ways. Meditation, relaxation techniques, distraction, visualization techniques and more can all be used to help manage pain, but they can not get rid of the pain completely, they are not a cure. To present it as a cure is, in my opinion, wrong and belittling of those of us who live every day with severe pain by making us out to be weak minded, psychologically inferior or somehow less than other people. To teach other doctors (as this article purported to do) that distraction will cure pain or cause a patient not to feel it, is to make being properly treated for pain even more difficult than it already is.

Think about it, you are in severe pain and have been for months. You finally break down and go to the doctor, hoping for some kind of relief, any kind of relief. The doctor then tells you that you merely have to distract yourself with other activities and the pain will go away. How would you feel hearing that? Yet, this is the exact scenario that this article and the presentation (to doctors no less) that it describes is teaching doctors; to cure pain all a patient has to do is distract themselves.

Monday, April 5, 2010

Pain Affecting Life

I hear it a lot and I see it on every website or blog devoted to chronic pain (no matter what the underlying cause of the pain is): "Don't let the pain rule your life" or "Don't let the pain take over your life". Sometimes my response to that is as follows:

WTF?!?!?! are these people nuts? How can I *NOT* let it rule my life when it does rule my life? It is present every moment of every day, no matter what. The more I move around, the more I hurt PERIOD. OH man and speaking of periods, that time of the month is just excrutiating! Washing dishes puts me in bed for at least a couple hours. Vacuuming the floor in 1 room (without moving furniture to get under or behind it) can put me in bed for at least a couple hours if I can even finish the room. Taking a shower without my trusty shower buddy (chair) takes my life in my hands because my leg gives out without warning now. Cooking a meal can be pure torture with the standing, bending, stirring, lifting, stretching etc. Putting sheets on a bed hurts like hell. Moving laundry hurts like hell. How can something that is affected by every tiny thing I do, as well as my emotions, hormones, thoughts and stress levels, NOT run my life?

It is the pain that decides how many household chores I can do in a day. It is the pain that has decided I can not go grocery shopping, or clothes shopping or run errands in my car. It is the pain that has decided I can not work anymore. It is the pain that decides whether or not I can go on a date with my husband or make love with my husband. It was the pain that decided I can't teach my youngest child, my son, how to ride a bicycle. The pain gets to decide if I can go to his belt ceremonies at Tae Kown Do (I've been to exactly 1 ceremony, with my walker and was in bed the next day). When I am invited somewhere it is the pain that decides whether I can go or not. It is the pain that decides whether I can even get out of bed on any given day!

The pain is the deciding factor in EVERY decision I make and everything I do.

Living with chronic pain. The truth is, the pain does rule your life. It forces you to make adjustments, choices about every day things that normal people take for granted and just "do". It forces you to learn to coexist with it, to do things despite the pain or in many cases in spite of the pain. It becomes a factor in everything you do, think, feel, consider, desire etc. It does rule your life. There is no "not letting it" rule my life.

For me there is only, doing the best I can and hurting like hell at the same time. If that is "not" letting it rule my life then I guess I have succeeded, but considering that pain becomes a major factor in every decision or choice, it sure doesn't feel or even look like the pain doesn't rule my life. It feels and looks (to me anyway) more like the pain does rule my life and occasionally it gives me a break long enough to get something done or I defy it (like a teenager does their parents) and get punished for it later.

But it definitely does rule my life.

Sunday, April 4, 2010

Oh Yay..mother nature hates me

To go with a week of sitting mostly in bed due to pain, I get to start this next week with more pain. Mother nature hates me I swear. Even before my back got real bad, my periods were bad. Back pain, bloating, severe cramps and moodiness. It was easier when I was on the pill, but when they took me off the pill it became excruciating. Due to my age my periods have changed. Now, instead of a week, I get at least 2 weeks and it just sucks. Having chronic pain is bad enough, but for 2 weeks out of every month it gets a lot worse. The bloating and cramps cause muscle spasms in my entire pelvis and lower back, which causes increased back and pelvic pain. It really really sucks. It is during the worst 3 or 4 days when I wish I was a man because they don't have to go through this.

Bridgette is sick. She's been running a fever for 5 days now, runny nose, nasty cough but the doctor says it is a virus. I think she needs an antibiotic. Now I am sick. Due to pain from my period I was awake all last night. At about 2 AM I got a sharp pain in my right ear followed by a weird pop and then my ear drained. So I've been deaf in my right ear all day today. My sinuses are all plugged up and I feel exhausted. But part of that could be from the fact that I only got about 4 hours of sleep. I fell asleep around 10AM this morning, and woke around 1 this afternoon but after a bit went back to sleep and woke again at 2:30 or so. Same thing happened Friday and Saturday nights. So I know I haven't gotten a lot of sleep the last few days. I really hate it when my sleep schedule is all screwed up.

I received a wonderful comment from Shauna (from Shauna's Life In Pain ) about the poems I posted. She liked them and said they were accurate about what it is like to live with chronic pain. Thank you Shauna, I really appreciate the feedback! You are welcome for my visit to your blog. I have enjoyed your writings very much and I am sorry to hear that today was such a bad day for you. I hope tomorrow (and the rest of the week) goes much better! I would love to read your poetry or other writing some day.

Here are a couple of pictures to make you smile.

The one on the left is Bridgette. She is 31 months old today and here she is fascinated by her chocolate bunny. She had a good time and was well behaved despite no feeling very well. On the right is my youngest child, my son Kyle who is 13 years old (will be 14 in June). I was trying to get him to smile a natural smile and I finally got one but as a joke he deliberately turned his eyes to the left. That's ok, it is still a good picture of my handsome young man!

Friday, April 2, 2010

Feeling a bit better

but not all the way back to normal. Yesterday I had to pick up Bridgette. It was either pick her up or be knocked over by her. She was grabbing my legs and jumping up saying "Ahma up! Ahma up!". So I picked her up and boy oh boy did my pelvis dislike that! To go along with the weird pain in my lower back, picking her up caused similar pain in both SI joints. ACK! So back to bed I went.

Today is a bit better. I still have the twinges, but nowhere near as often. I still have the areas of higher pain in lower back and the top of both SI joints, but its not as sharp a pain. I'm hovering around a 7 to 8 instead of a 9 to 10, which is better. Not great, but better. I just wish I could sit in bed in a manner that would let me stitch. Since I have to bend forward a little to stitch in bed, I can't do it, it just hurts too much. This is very annoying because man oh man I want to stitch! ARRGGHH!!

Oh well. Back to bed for me.