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.

Monday, November 23, 2009

How To Increase Pain

One good way to make your pain level go higher without any warning is to have children! They are guaranteed to surprise you in many ways and leave things on the floor to trip you up! Woo hoo..loads of fun!! (NOT)

Seriously though, my pain is currently at a 9 out of 10 because about 30 minutes ago I fell in my son's room. I was looking for his TaeKwonDo outfit to get it washed and ready for class tonight. I stepped over one thing that was on the floor and didn't see the bat. So naturally my foot came down on the bat and it slid/rolled away which caused me to fall.

I took my meds and that is a good thing because it has kept me from a pain crisis (at least so far). I am at a 9 though, which isn't much fun. I'm waiting for the pain to even out a bit then I'm going to go stitch. Looks like the remainder of today will be a bed day.

For those who don't know what I mean by "bed day"; it means that I have to spend the day in bed due to pain or due to my leg(s) no longer working properly.

Friday, November 20, 2009

Please help!

A young mom named Anissa has had a stroke. Please send her good wishes, say a prayer or whatever it is you personally do to wish someone well!

You can donate via PayPal for her family by clicking here.

Or check out for other ways to assist the family if you wish to.

You can learn more at Anissa's first blog:

Addiction vs. Dependence

When you talk about opiod pain medication more and more people have the instant reaction of "anyone who takes thsoe medications is a drug addict". There is no compassion. There is no understanding. There is no leeway for medical conditions that might require long term use of opiods. As I have said before the US War On Drugs has become a very bad thing. It focuses more and more on doctors and chronic pain patients. More and more people in our society believe that anyone who takes opiods is a drug addict, regardless of the reason for the medications.

A few years back (while in high school) my daughter came home from school one day extremely upset and crying. Her science teacher was covering illegal drugs, alcoholism, and addictions in class that day. The teacher told the class that anyone who takes prescription painkillers on a regular basis is a drug addict, no exceptions. Further she stated to the students that there are no medical conditions that require taking such drugs on a regular basis, not even end stage terminal cancer or AIDS. My daughter told me that she had to leave the classroom because she was crying and so very angry. The next day she went to school with my cat-scan and x-ray films (with my permission) and asked the teacher if she could address the class about the issues of chronic pain and narcotic drug use. The teacher allowed her to do so but wasn't too enthusiastic about it.

To make the story a bit shorter (yeah I know..I'm long winded LOL) she showed the class the x-rays (which show the plate and 6 inch screw very clearly). She told them what my diagnoses were and then asked them what they would expect the symptoms or long term effects to be. Of course pain was one of the things the students mentioned. She then asked them if they were having to deal with a broken pelvis on a daily basis, did they really think they could do it without any pain medication at all. End result, the teacher apologized and told the class that she was wrong and that there were people out there who obviously did need such medications. My daughter then went on to teach the class the difference between addiction and dependence.

I am still very proud of my daughter for standing up to her teacher and classmates on this issue, specially since their belief that chronic pain patients are all drug addicts was so intensely, blatantly, and vocally stated. She told me that a few of the other kids still believed the addict line, but most of the class seemed more open minded to the idea that not everyone who takes pain medicine is a drug addict.

In 2007, my son brought home his science text book (6th grade) for a homework assignment. The chapter was about addictive substances such as caffeine, nicotine, and of course drugs. The textbook itself stated that anyone who takes opiod based pain medication on a regular basis is a drug addict. I was utterly flabbergasted to find such a skewed (and obviously wrong) statement in a middle school science text book! I was also very hurt when my son (who is a very literal person) proceeded to try and convince me that I was a drug addict because I take pain medication every day.

I showed him my x-rays and we talked about broken bones, nerve damage and opiod medications. Thankfully he understood that the text book was wrong but it still hurt like hell to have my son think I was an addict because of some stupid politically correct crap in a text book!

Many chronic pain patients like to blame media hype and the government for the widespread incorrect belief that all such patients are drug addicts. I agree but I've also seen that it goes further than that. Our schools, under the guise of trying to teach our children not to take drugs, are teaching this same misinformation. Many churches also teach their followers the same thing. Instead of true understanding, this lie is becoming more entrenched in society every day.

They teach this lie but they don't teach the difference between addiction and dependence; there IS a difference.

Addiction includes a psychological need that drives the person's behavior to acquire the substance they are addicted to in any way possible. This includes alcoholics, street drugs and prescribed medications. Addiction includes a psychological aspect that dependence does not. For one's need to be classed as an addiction there has to be both the psychological and physical aspects. The psychological aspects includes the firm belief that one must have the substance to survive. It is also accompanied by compulsive behavior to attain the substance and to maintain supply of the substance. If the substance is taken away the addict has not only physical withdrawl but mental withdrawl as well. An addict can not control their need for that substance, they absolutely have to have it even though they know there is no medical reason for taking the medication. An addict has the physical dependence on the drug, but in addition to that they also have a deep psychological need for the drug.

Dependence is NOT addiction. Dependence is solely when the body gets used to having a substance in it and goes into withdrawl without it, such as the nicotine in cigarettes. Narcotic medications are not the only medications that people can become physically dependent to. Anti-seizure medications, sleeping medications, anti-anxiety medications, even some anti-depressents can have dependency issues. (many other meds as well) Many chronic pain patients become physically dependent upon their medications without becoming psychologically addicted. If their physical condition were resolved they would no longer need the medication and would willingly stop taking it. Heck I would GLADLY stop taking opiods if I could! Someone who is only physically dependent on a drug *can* stop taking it if they have to, or their condition improves to a point where it ins't needed anymore.

Addicts WANT to take those drugs. People who are dependent but not addicted, don't want to take those drugs and would prefer not to take them. Their medical conditions make the drugs necessary, not some irrational psychological compulsion.

Is it possible for a chronic pain patient to become an addict? yes I believe it is. But having experienced first hand the failure of our medical system to treat chronic pain I firmly believe that for many chronic pain patients who become addicted, the medical system is partly responsible. A person who is in pain all the time, yet can't get adequate treatment for that pain (and is often ridiculed, judged, sneered at, insulted, humiliated etc), will eventually become desperate for relief. That desperation would make the person do things to get the medications that they wouldn't normally do and thus help create a psychological addiction.

However for those who develop an addiction in this way, the addiction can be treated by providing the patient with consistent and adequate pain control. Once their pain is better managed on a consistent basis, that fear driven desperation based addiction will fade. This would of course take time and consistency, something our medical community (and society as a whole) is not willing to do. We want quick results, instant gratification and medical things as well as psychiatric illnesses are not resolved instantly.

I think if more people were educated about the differences between addiction and dependence we would see a more humane response to chronic pain patients. I also believe that if more chronic pain sufferers were treated properly from the start (rather than needing to see many different doctors, suffer misdiagnosis etc for years before finally being treated) we would see fewer addicts within the chronic pain population.

I have felt that desperation for relief in the past. It caused me to consider smoking marijuana or buying painkillers on the street if I could find a seller. I didn't do either one out of fear of being arrested, but feeling that desperation to a point that I was even thinking about turning to street drug dealers, made me understand that some people (who doctor shop or get prescriptions from more than one doctor) do it because they have no other option available, not because they want to get high. Thus the resulting addiction is just as much the fault of the medical community as it is (possibly, I think it may be more the medical community) the possibly addictive nature of the drugs.

That this occurs is extremely sad and shows quite clearly how the medical community continues to fail patients on a regular (and ever widening) basis.

Chronic Pain vs. The Libido

Chronic Pain vs. the Libido

M. Hull © Nov. 20, 2009

Chronic Pain: continuous pain all the time

I live with chronic pain. This means that I am in pain every minute of every day. Sometimes the pain is not too bad and other times it is very bad. For me it feels like my life (and everything within it) is now a battle between that thing and the pain. I’ve read many articles and blog entries about chronic pain but very few have discussed how chronic pain affects one’s sexual desires. For me this aspect is definitely a fight; the desires fighting to survive despite extreme pain or fighting to survive despite the fear that fills me at the idea of sexual activity. With my conditions the more I move around, the more I hurt and intercourse isn’t exactly a sedentary activity. Chronic pain affects every aspect of a person’s life in at least two ways; physical and mental/emotional.

The physical effects of chronic pain on one’s sex drive are fairly logical if you think about it. Pain is not conducive to sexual arousal (even for masochists, constant intense physical pain caused by an injury is not arousing as it is a different pain from what they usualy enjoy). One’s body image is lowered if there are physical signs of a chronic condition (such as scarring). Sexual activity may increase the pain, either by aggravating the condition itself or just from muscle strain. For some, the endorphins that are released into the body during sexual arousal can act as pain control. For many, this stops upon orgasm, for some it lasts a bit longer but for most once the body calms down and returns to normal, the pain returns and usually at a higher level due to the physical activity. People who suffer from chronic pain are often very physically tired and being tired is another drawback to physical intimacy.

Chronic pain has many mental/emotional effects as well that impact upon one’s sex drive. Depression, anxiety, exhaustion, anger and other psychological effects occur. Many of these conditions have a negative impact upon the sex drive and if the condition itself doesn’t the medications used to treat those conditions often have the side effect of decreased sex drive (anti-anxiety meds, antidepressents, blood pressure meds). One’s self-esteem takes a major hit when one suffers from chronic pain. As the pain increases the one suffering must take medication or undergo painful procedures to control the pain. This can cause thoughts of weakness and feelings of shame to crop up. Society is very against medications for pain, often judging anyone who takes such medication regularly as a drug addict (regardless of the condition of the person). We often tell ourselves to just deal with it, suck it up and smile no matter how bad it gets. So when we can’t just “deal with it” without medications, we feel guilty for needing them as if we are somehow a failure. Those negative feelings have a negative impact on sexual desires. Add in how one’s life changes (fewer activities we can do etc.) and those feelings of not being good enough anymore start up and also decrease the sex drive. (If we're not good enough to cook dinner regularly, then how can we be good enough for sex?) The psychological and emotional impact of chronic pain are not always logical.

There are more ways to be intimate with one’s partner than intercourse, but we are human beings and as such intercourse is something we enjoy. Society also teaches us that intercourse is very important and is a necessary part of any loving intimate relationship. Add in a partner who truly does not understand what it feels like to hurt all the time and how it affects us mentally/emotionally and the sexual arena (difficult in the best of situations) becomes even more difficult. People start to avoid it in the hopes of avoiding the emotionally painful interactions that may occur when there are differing expectations and lowered ability.

There are ways of dealing with this, but it takes a lot of communication, understanding, and the ability to be open to trying different things to find a way that works for the people involved. Sex is a difficult subject to discuss under the best of circumstances, when one’s self-image is more deeply tied up in it due to physical issues it becomes harder to talk about.

If your partner suffers with chronic pain and thus has a lower sex drive than they used to have, be patient and understanding. Be open to discussing sex and other ways of being physically close. Realize that we are exquisitely aware of how our conditions affect our loved ones and we would give anything to stop it if we could. Sex is great, but it is not the end all be all of a relationship. The end all be all of any intimate relationship is the emotional attachment that brings the people together and there are many ways to show love!

Monday, November 16, 2009

Busy Day and chronic pain vs. the libido

Today was a very busy day but I got stuff done which was nice. Stephanie and I took Bridgette to the park. She had a blast going down the slide and playing on the swings and climbing all over the play equipment. I got some stitching done and some laundry. I'm trying to stick to the going outside at least for a few minutes every day and taking Bridgette with me so she can get some fresh air and sunshine also.

I had to try and take it easy because my back was really hurting today and I was up most of the night with it. This is the side effect of making love with my husband, extra pain that can last anywhere from a couple hours to a couple days. Oh well such goes life. I"m going to take my nasty headache to bed and try to write more tomorrow on the topic of chronic pain and how it effects one's libido.

Sunday, November 15, 2009

A Good Day Today

Today was a real good day. I still have a bit of a cough, but it is nowhere near as bad as it was this passed week. The body aches and fever appear to be gone as well! Sadly this means I can feel my back pain again but happily it has been relatively low all day. I got stuff done today as well. 4 loads of laundry, took my niece out to play catch in the front yard, then we went for a short walk, then I felt like going for a drive so DH, my niece and I went for a ride and stopped at Dairy Queen for a little ice cream. We had a good time sitting in DQ eating ice cream. They were playing classical rock (70's and 80's music) in the store and Bridgette was dancing in her high chair while eating her sundae. She kept saying "Hi!" to all the other people there and made them all smile. When we got home we gave her a shower to get the ice cream out of her hair LOL Then I was able to cook dinner and I even managed to finish it instead of having to give it to someone else to finish. DH cleared the dining room table for us and we ate dinner at the table like a family, which felt real good.

After that I got a phone call from my best friend in the world. She has had some medical issues that have been causing her chronic pain, but the doctors weren't willing to help her or even try very hard to find out what was wrong. Well, she had good news too! She went to see a new doctor, who happens to be a pain management doctor and formerly an orthopedic doctor and he gave her hope and is going to help her figure out what is going on, whether it can be healed, and help manage her pain better. I am so happy that she will have some relief from the horrible pain she has been suffering with for many months now. I am even happier that she is now feeling hope and has the possibility of finding out exactly what is going on. Here is hoping she will be all better real soon!

I actually felt well enough to do some stitching today as well, which is good. So all in all a very good day!

I hope everyone else had a good day as well!

Saturday, November 14, 2009

Well ..two days in a row! Miracles do occur!

Woot! two days in a't know I had it in me.

Other than coughing I am feeling better which is nice and for some reason my pain is low. I'll take it!

Hey maybe being sick is a cure for chronic pain? Nawww..not for a long time, just for while you feel like hell warmed over, then I tend to get a break for a day or two, until I start doing stuff again. LOL

Today I folded the laundry and put it away. Not a major amount of things done, but I guess its better than nothing at all.

I'm sitting here listening to music. Everytime I do this I remember just how music effects me and then I forget until the next time I sit around listening to music. It always lifts my spirits, even the songs that are sad or painful in nature. Makes me want to get up and dance, it makes doing housework easier, and it just makes me happy. It makes me remember what is good about life, remember being young and thinking I'd never get old and live forever. (typical teen stuff) Either way good stuff and a nice way to spend a few hours :)

Friday, November 13, 2009

Still sick

Has anyone seen a lung or two floating around? I'm pretty sure I coughed one up yesterday at some point, it would explain why all my ribs feel broken. (Yes I hate being sick)

Hey at least my fogged in brain remembered to post something today! 2 points for me LOL

Wednesday, November 11, 2009

It is official, I am sick! (well sicker anyway)

Woke up in the middle of the night with those lovely symptoms of acid reflux disease (which my meds gave me by the way). That nasty taste in the back of my throat, gagging on it, difficulty breathing and the entire length of my esophogaus, trachea and throat all burning as if someone spilled gas down there and lit a match! Oh what fun! Added to this my nose was running and I was congested in the chest so bad I was wheezing loud enough that I could hear it despite the fact that my ears are blocked up and I am now more deaf than I usually am!

So here comes fun..need to cough to clear lungs...cough causes gagging and stomach acid to enter mouth..burning ensues which causes nose to run and eyes to water..which drips into my throat and makes me want to cough more..rinse and repeat (in this case..gag and repeat) FUN!

I'm the only one awake, not wanting to wake up my husband so I hide in the bathroom hoping the bronchial barking and gagging noises won't wake him up, then I go hide in the living room. We're out of Mylanta btw so I can't kill that burning in my esophagus.

I take mucinex to help thin the mucus in my lungs, find out I'm running a 101.5 fever, yet am freezing cold so put on sweatshirt..immediately start sweating and feeling suffocated so take it off..repeat over and over. Finally I use an asthma inhaler and feel a bit better after my stomach empties itself a couple times.

It is now almost 11AM and I go back to bed. I have this sinking feeling that I am actually sick and this isn't just my run of the mill acid reflux flare. Despite being on Nexium I get those once or twice a month. FUN!

I wake up a bit past 5PM and yup, I am definitely sick. My lungs are full so lots of bronchial barking going on when I cough, loads of wheezing when I breathe..its almost musical! Anyone care to dance? Very productive cough. My sinuses are plugged up and my ears are under waterm so my head feels like I am stoned and I can barely hear. Which of course means I am yelling because I can't tell how loud my voice is. Of course the fever has to show up just to add my favorite friends in the world, brothers Mr. Heat Miser and Mr. Snow Miser battling it out inside me as to who is better and who gets control of my body! FUN! (Right now Heat Miser is winning.)

Never thought I would be thankful for the overactive sweat glands my medications have given me. Between Mr Heat Miser and my standard sweating from my meds, I am currently fairly comfortable temperature wise. Tylenol brought the fever down to 99.5, which I am sure helped as well.

There is one good thing about being sick and feeling like pain is buried under the illness so I don't feel too badly in that department! lol

Tuesday, November 10, 2009

Why the fusion failed-Mar G

I have been asked to answer the question why my fusions failed. The reason is different for each fusion so I'll separate the two of them.

The first fusion was done in Nov. 1997 I believe. It was done by a military doctor. Come to find out, after the fact, this surgery was not done correctly. I believe this contributed to why it failed the way it did. Here are the errors:

  1. The incision was made in the back
  2. No hardware (plates or screws) were used
From what I learned (after the surgery) the best way to fuse the SI joint is on an angle from the front. It usually requires an incision in the abdomen or one starting at the belly button and going around the side to the sacrum in the back. That's a large incision. I do not know why the original surgeon did not do it this way. The SI joint is one of the hardest joints in the body to fuse because of its shape and angle. From everything I've read and every surgeon I talked with afterwards a fusion of the SI joint requires hardware. The use of plates and screws, to hold the sacrum to the hip bone while it heals. These were not used at all.

What broke this fusion was quite simple, I fell. My son, then 2 years old, hugged me from behind. He was just tall enough to hug my knees from behind and when he did my knee gave out (as it will when hit from behind) and I went down. I landed on one of his little wooden alphabet blocks. This resulted in a perfect L shaped bruise and it hit exactly at the base of the incision.

My second surgeon believed that I may have had psuedoarthrosis. This is basically that the body grows a thin bone covering over the area. On x-ray this covering looks like solid bone, but on cat scan the space behind that covering, the original joint, is visible. As no cat scan was done post-op I don't know if this contributed or not. All I do know is that I was 6 months post op and all x-rays showed solid bone (no joint) yet it broke from a small fall that shouldn't have done it.

After the fall the x-ray showed a fracture line in the fusion and my pain, which had been easily manageable, went through the roof.

The second surgery was done in 1999. This surgeon explained the errors made in the first surgery and was not a military doctor. He explained about the possible pseudoarthrosis as contributing to it breaking the first time. He also told me that this was the last time this surgery could be attempted. Due to instability in my lumbar spine he chose to go through the original incision site. He said the risks were too high to do the larger incision. He also made a similar incision on the right to harvest bone from my sacrum on the right to pack the fusion with. He used a plate and screws, one of which is 6 inches long and lays horizontaly from my hip to half way through my sacrum.. (This screw is the reason I can walk today).

This fusion failed for a group of different reasons. I believe that the failure of the first attempt was a contributing factor but I have no evidence of that. I was unable to follow doctot's orders for recovery after the surgery. Then I got kicked exactly on the surgery site and x-ray showed there was a fracture. After that I spent a few weeks in a wheel chair for a month, hoping it would heal anyway as it was still only 3 weeks post op. The surgeon said it might anyway. After that month an x-ray showed solid bone so the surgeon ordered a cat-scan to rule out psuedoarthrosis. With that x-ray result I was forced to get out of the wheel chair and continue activities (such as walking without crutches and bearing weight on my left leg) that I shouldn't have been doing (its a long story). The cat-scan verified pseudoarthrosis. The surgeon told me that it was just a matter of time before that thin bone covering breaks and when that happens I will be walking on a permanent fracture of the SI joint. He also said that it would be a matter of time before the plate and screws break also and when that happens I will be in a wheelchair. (He gave it 5 years till I was in a's been 9 so far)

So that is why my fusions failed.

I have had bonescans done and bone density tests to see if I have early osteoporosis or some other explanation for the pseudoarthrosis, but those tests came back normal.

Due to another fall where I landed on the edge of a marble topped table, the fracture was made worse (becoming a compound fracture and leaving bone fragments floating around) and I blew a second disc somewhere between 1999 and 2001/2002. With the worsening of the fracture my formerlly indented left hand scar filled in due to swelling. This swelling has pretty much stayed since that last major fall. Prior to landing on the table that scar was indented along its entire length. Now the indent is only visible near the top of the scar and only the width of my index finger (1/2 inch maybe), whereas if I were on hands and knees that indent would hold a small cup (like a cup-holder). When other things cause increased swelling (moving around too much, weather changes, falls, my period) that little bit of indent goes away and if the swelling is bad enough there will be a raised lump the length of the scar that is visible through my clothing. Lately the swelling has increased to form the shape of the letter C with hard nodules/spots at the top and accross the bottom where it hurts to touch it at all. This now causes visible swelling around into my hip and half-way accross the sacrum.

I have visited the local orthopedic surgeron (the only one who does spines and pelvises). He told me that at the very least, they needed to go in and add a second plate (for increased stability) and remove the bone fragments that are floating around; basically to clean it up. He ordered a cat-scan (this is how I found out about the second disc) and after that he told me he never said anything about a second plate etc. etc. I was in tears. He then told me that when my pain is no longer manageable without invasive procedures that he'd go in and clean it up.

Well when it became necessary to start multiple injections and radio frequency procedures (which also use needles, at least 6 on the left side) to control my pain I went back to the surgeon. My understanding is that an invasive procedure is anything that breaks the skin and enters the body; cutting, punctures (needles!) and such. He was very very rude on that visit! He told me that those are not invasive and there is nothing wrong with me then walked out of the room while I was trying to talk to him. I followed and continued to try and speak with him. He totally ignored me and entered a different treatment room closing the door behind him. I went home in tears. A few months later he was arrested for posession of cocaine with intent to sell, so in hindsight I am glad I've never undergone surgery with this man despite his reputation of being a great surgeon.

Mar G, I hope that answered the question of why the fusion failed. Just be aware that a spinal fusion is different from an SI fusion and my experiences are not typical, so please don't panic yourself worrying that this will happen to you also. I do not know if pseudoarthrosis can occur in a spinal fusion, though it probably wouldn't hurt to ask your doctor about it. I hope I did not scare you! I hope your recovery continues to go very well!

Monday, November 9, 2009

Sometimes things just don't work out

I was hoping I could do the post once a day thing but fate decided "HA HA nope! You want it, you can't have it!". I'm fairly used to this because too many times when I set up to do something, I can't get it done. Though it does still bother me, just not as much as it did the first couple of years.

Anyway, I was in the laundry room Saturday to do some laundry (what else would you do in the laundry room right?? HA! I can't think of a few things with the spin cycle...nevermind I'm just being weird LOL) and silly me tripped over a towel and fell hard on my left side. This put me in bed all day Sunday due to pain. Today the pain is still high but not as bad, though the lovely tropical storm Ida has added the usual deep throbbing ache I get when it rains (which it is copiously doing now).

What I am happy about:

My son is doing well with homeschooling
My niece is being really cute as usual and loves me a lot (I got cuddle time today!! YAY!!)

Friday, November 6, 2009

Well as usual..sign up for something..back/pain screws me up

I did not manage to sleep until 9AM yesterday my time. Total time awake, just over 4 days. I woke up at 3PM yesterday afternoon, in a bit less pain but still hurting pretty badly. I managed to stay awake all day today, which should help me return to a normal sleeping schedule in less than the week it usually takes.

I don't understand this. I hurt like hell, it keeps me awake and next thing I know I am stuck in a cycle that can last for 3 to 6 days or more before I can finally sleep. Though if I sit in my bed and read I fall asleep and end up face planting into whatever book I am reading. Within a few minutes I wake up and as far as I can tell, I did not sleep at all. I don't understand it!!!! Then after all that, I spend hours laying in the dark trying to sleep and just can't do it. This usually is accompanied by my left leg twitching, shooting pains down my leg, and massive pain just holding me prisoner and that is exactly how I feel. A Prisoner! Held against my will by an enemy I can't see or fight because it is my own body,. Somewhere along the lines my body decided to betray me, to fall apart and torture me for hours on end with no real relief. Do I take medication? yes I do. Does it control the pain as well as pain management doctors say it should? NO it doesn't. Which really sucks.

Ok I'm rambling and not making much sense.

My neice chose to cuddle with me for over 30 minutes today. She just snuggled right in beside me while I was sitting in my la-z-boy recliner. Ohman that felt so good! To hold a little wiggly one again, it just melts my heart and breaks it at the same time. Having a little one love me as much as Bridgette does me just feels so marvelous, but knowing that my pain prevents me from doing everything I want to do for her just rips me apart.

Oh well..maybe I'll be in a better mood tomorrow. I am tired from forcing myself to stay awake all day in the hopes I will sleep tonight. The way I feel right now, I should succeed.

Wednesday, November 4, 2009

NaBloMoPo; Still Sleepless In Florida

The month of November is NaBloMoPo Basically it requires that you post in your blog every day for the month of November. I wanted to give it a try as it should be interesting. I signed up on the NaBloMoPo site but since I have two blogs I put the url to one of them in my description, so this blog may not she up as part of it. That's okay though, I don't mind.

With this blog I think posting every day will do a couple different things:

  1. Give a good idea of how chronic pain and depression vary from day to day which is one of my goals for this blog

  2. Give me a daily outlet for thoughts/emotions/frustrations/whatever crops up

  3. It sounds like fun

  4. Will force me to find things to post about every day which will result in me paying closer attention to my days and probably seeing things I did right or enjoyed rather than just the negative pain and depression stuff

  5. It will also give me practice at writing and that may help me regain my enjoyment in writing and result in me writing essays, poems, or stories like I used to.

Well it is 3AM here and I am awake. I'm headed in to being awake for 48 hours. I tried to sleep during the day Tuesday and just couldn't do it. My pain level has been high since Monday evening but my meds have kept me out of a pain crisis. I tried laying down for over an hour, no lights on, but it just hurt too much so I got up. I just want it to stop! It is mentally exhausting to endure high levels of pain without taking it out on other people by snapping at them or losing my cool. It takes a lot of mental and emotional energy to deal with the pain and not fall apart, specially since falling apart makes the pain worse.

I know that some of this pain is muscular. My muscles are weak due to my staying off my feet to control my pain while waiting a couple of months for the radio frequency procedure. So now, when I do things, my regular pain goes up and I get the added pain from using those weakened muscles.

Knowing that my muscles won't strengthen themselves if I don't use them, I chose to take my niece for a very short walk (not even half a block and we have short blocks where I live). This did increase my regular pain and the muscular pain, but I also know that by working those muscles just a little bit every day I will eventually strengthen them and my pain will go down. Right now my entire pelvis is throbbing, I have sciatica symptoms in both legs (numbness, tingling, occasional shooting pain) and the muscles in my legs, hips, buttocks and abdomen are real sore. We hadn't gone even 2 yards when my muscles started to ache a little. This shocked me! I knew my muscles were weak but I did not realize they were that bad. If I don't do something to strengthen my muscles up again, I am going to quickly reach a point where I won't be able to walk because of excrutiating pain and lack of strength. So I am determined to do a little bit of exercise every day.

Tomorrow (well later today technically) I will take Bridgette (my niece) for that same short walk and when I can do that walk without increased pain, then I will make the walk longer; slowly increasing it until I can once again walk 1 mile without increasing my pain like I used to be able to do 8 years ago. I also know that with stronger muscles my spine and pelvis will have better support and that should result in a lowering of my chronic pain symptoms. Stronger muscles will also result in my being able to do more things before my pain level goes up. I would love to be able to run the errands and go grocery shopping like I used to. For 2 years now Ron has to do those things and I feel bad because he works all day then has to run to the store and do grocery shopping on weekends. That puts alot of stress on him and I feel like I don't fulfill my job and that I am useless and broken. I want to be able to do more than I can do now.

I also hope that Ron (My husband) will join Bridgette and I on these walks. He walked with us today and I really enjoyed having those few minutes with him. It felt good to be out of the house, even for a few moments and to be with him at the same time. We had a lot of fun on the walk pointing out trees and such to Bridgette and hearing her repeat the words. She got all excited about everyone's shoes that she stopped walking, picked up her left foot and said "", then we had to show her our shoes. She had a huge grin on her face. Ron and I told her we love her and for some reason she pointed out her ears to us then her nose and then her mouth, smiling and giggling between each one. It was just adorable! Having those few moments alone (sort of alone) with Ron just felt so good. I got warm fuzzies and my mood improved also.

I am behind on the stitching blogs I read because I've been reading some very interesting blogs by people who live with illness and/or chronic pain or both. Reading their blogs (from the first post to the latest post)  is what sparked the idea for this blog as a way to help me fight the depression. So I set up another folder in google reader (which is how I read the blogs) and added those blogs to my list. I will be trying to find a couple more blogs of people who suffer from chronic pain and reach out to them.

Okay time to catch up on stitching blogs then I'll try to sleep again and if that fails I'll pull out the square I am stitching and work on that. Most likely I won't be able to sleep until around noon which is when my body will hit the point of exhaustion. I hope it hits that point sooner rather than later. I had 4 hours sleep Sunday night, was up all night Monday and now I'm up for the night again. This is not good. Lack of sleep lowers the ability to deal with the pain, it also lowers my pain tolerance which results in my pain feeling worse than it actually is because I just don't have the mental/emotional strength to deal with it. Sometimes exhaustion is the only way I can get past the pain when it is high like it is now and sleep. It really sucks because it can take me a week or more to get back to sleeping at night once I have slept during the day, which interferes with homeschooling my son and everything else.

Tuesday, November 3, 2009

Pain vs. you? NO!

In the following paragraphs the word you is intended to be a general you, not a specific person. This post is not directed at anyone specific either. It was sparked by one person, but this is something I have run into many times with people and I feel that it is an important topic, hence I am writing it here.

I have had many people, upon learning more about chronic pain, say something along the lines of the following:

  1. "I shouldn't complain about my (insert pain or condition here) because it is nowhere near as bad as yours!"
  2. "My pain is only intermittent whereas yours is all the time, so I shouldn't complain"
By comparing your experiences with pain to someone else's experiences with pain, and then deciding that your pain is somehow less, you are devaluing yourself and your experiences as being of no consequence.

This is just not true and it is very unfair to you. It is saying that you are somehow not worthy of understanding, compassion, etc.

Every person experiences pain differently. We all have different tolerance levels for pain. The medical condition that may cause your pain differs from someone else, even if the diagnosis is the same how it affects you physically may vary from another person's experiences with the same condition. Just because your symptoms are not as severe, or not constant does not negate the fact that you still suffer because of that condition.

By saying that you shouldn't complain about your condition because it is not as severe as someone else's you are saying that your experiences are not worthy of compassion, understanding, and assistance. You are saying that you are not worthy of these things and telling other people that you don't deserve these things. By doing so you deny those who care about and/or love you the opportunity to show that caring/love by being there for you in whatever way applies to your situation. Some people even take this kind of thought process to be a rejection of them as a person and of their emotional/psychological attachment to you.

Personally I do not agree with this. As far as I am concerned if anyone suffers from a condition that causes pain, be it occasional pain or constant pain, they are just as deserving of assistance, compassion, understanding, love, and support as anyone else.

Pain is pain whether it is constant or just occasional. The effects on the patient are the same. Pain causes depression, inability to function the way we want to, taking of medications if needed, missing school or work etc. It does not care what you are scheduled to do on any given day. It does not care if you are a male or a female, a parent, spouse, child, or sibling. It does not care about your income level, your work status, or whether you are in a relationship or not. For the period of time in which you are dealing with and suffering because of the pain, your whole life is affected for that time. Whether that time be 2 hours or every minute of every day, you still suffer that pain and its negative effects.

Your pain is just as important as someone else's pain!

Your pain matters just as much!

 In fact, I have found that since chronic pain became a part of my life I am a lot more compassionate and understanding of other people's pain than I used to be. I do not rank other people's pain on terms of whose is better (meaning whose is worse) and thus more deserving of attention. I do not compare their pain to mine and dismiss that person as not deserving of my compassion/understanding if their pain doesn't equal or surpass my own. I understand fully that for as long as they are in the grips of that pain, their suffering is just as real as my own. Their suffering is just as deserving of relief, understanding, etc. as my own.

Do not put yourself down because your pain is different, it is still pain and it still hurts and it still affects your entire life while it is active. You are as deserving of compassion, understanding, assistance, relief, love etc. as anyone else.

Sleepless in Florida

Yeah I know that is a dumb title, silly and all that but right now I need something to distract me. I have not slept yet and this time it is not because I was reading blogs and lost track of time. This time it is because I hurt and have been hurting all night. I took my meds but they did not help enough that I could actually lay down and fall asleep. When I did lay down my left leg had the tingles and shooting pains in it, then it started to kick out on its own (this is due to nerve damage) and both SI joints just hurt with that real deep intense throbbing pain they give me. After a few minutes laying down was making the pain rise, so I'd sit up. At first this helped but after a little while (about 5 to 10 mins) it was hurting too much and I had to lay down. Back and forth all night long. Finally at 6:45AM I gave up and came out to the living room and booted my computer so I could read email and blogs to distract myself. It isn't helping as much as I had hoped, but every little bit helps and I'll take it.

When it gets like this the only way I can actually sleep is to hit exhaustion. This can take anywhere from being awake for 24 hours straight to 72 hours. I think today will be one of those 24 hour days to exhaustion in part because I only got about 4 hours sleep yesterday and had been awake last night as well.

I managed to cook dinner last night, take a shower and shave (not always easy due to having to bend over) by using the shower chair thing, did some laundry (2 loads), changed sheets on my bed, and did some straightening up in my bedroom. That's not a lot but now I'm dealing with a lvl 9 in pain. When I said it doesn't take much to make my pain level go through the roof, this is exactly what I mean. None of what I did was difficult or took very long, and I rested every 15 minutes to guage my pain level, and I stopped when I hit a 6. But even with meds that 6 would not go down, instead it went up and by the time I went to bed last night I was at an 8. I find this so very f***ing frustrating!

Well I'm going to go and try to lay down and get some sleep.Wish me luck!

Monday, November 2, 2009

WOW! A Good Day!

Today has been a good day pain wise. I haven't gotten above a 2, yes a 2 (OMG I can't believe it myself!). It might have something to do with not doing much and getting lots of sleep because I am sick, but I don't care what the reason is, it is wonderful to have such a low level of pain.

What I find interesting is that for me, being at a 2 is almost like not being in pain at all. I'm used to sharper, deeper, and radiating pain. So when my pain is more of a dull ache, and only radiates once in a while instead of constantly, I almost feel like I have no pain at all. The human body is amazing in how it can adjust to just about anything given enough time.

I continue to not have more than 1 or 2 cigarettes a day, and those wait until late at night. It is hard to not go buy a pack of cigarettes during the day. When my mind starts wandering down the "I need a smoke" patch, I deliberately start thinking about something (ANYTHING) else. So far this has worked well.

The last couple of days have been fairly quiet with lots of sleep. I slept 12 hours last night, then took a 4 hour nap this afternoon. Sadly I'm not sleepy yet and it is 2AM (Central Time) right now, but I don't think I will be up much longer as my body is starting to give me that "getting tired" feeling that has sent me to bed every few hours the last few days. I am enjoying this because insomnia is one of the things I struggle with on a daily basis. I wonder if it is possible to store up sleep? If so that seems to be what my body is doing now. I just hope it isn't preparing for a week of no sleep because that would just suck.

My neice went trick or treating and had an absolute blast! She looked so cute as Snow White! She doesn't like to stand still and smile for pictures, when we try she runs to whoever has the camera and wants to hold the camera or look at the pictures on the screen of the camera. So this is the best picture I could get that shows her costume. She looked so cute! I aboslutely loved the little red shoes!

Sunday, November 1, 2009

Quitting Smoking

Well I have gone 3 days without any cigarettes. I'm surprised that I managed to do it, but I did. I have a head cold now which really sucks because along with the fever comes body aches and body aches increases my overall pain level. I've been sleeping more often than not the last few days. I figure if my body wants to sleep then let it because the body heals best when it is at rest.

On Wednesday I did a lot of housework. On Thursday I woke up with a head cold. My ears are all blocked, I had a fever, body aches, and lots of sinus pressure. I guess sleeping helped because today I feel a bit better though I get tired quickly and my ears are still blocked. The fever seems to be gone and the sinus pressure isn't as bad.

Due to being sick and sleeping more than anything I ended up not doing much the last couple of days. But I also paid for everything I did on Wednesday. By Wednesday night my pain level was at crisis stage and I ended up in bed. I tried to write a post but I kept losing track of my thoughts and finally just gave up, saving it as a draft and went to bed.

My daughter stayed with me for a while, trying to make me feel better. She is now making fun of me because as we were talking I kept changing subjects in the middle of a sentence so it didn't make sense, but it was hilarious. I hate when it gets like that because I can't remember everything I said or did later on.

My niece went trick or treating tonight as Snow White and she looked so cute!! I'll try and put a picture up tomorrow. Right now I'm going to take my sick butt back to bed.

Hump Day Happenings

This is from Wednesday October 28, 2009. I apparently saved it but didn't publish it.

Well so far so good. It seems this blog is motivating me because yesterday every time I started to think "Aww forget can do it later", the next thought was about how I am trying to stop being withdrawn. I also thought about the blog and how I would have little (nothing most likely) to post here if I gave in to that feeling of "forget it".

I ran accross a story on another blog. It was written to recount how one person help another to see how chronic illness (also fits for chronic pain) effects a person's life. It is called the "Spoon Theory" and written by Christine Miserandino. I thought this was an ingenious way to explain how the illness and/or chronic pain. Take a moment to read it. The article is at
In keeping with the Spoon Theory it is accurate for living with a chronic illness or pain. However, when you add in depression you start off each day with fewer spoons which makes things harder.

Well yesterday I made sure my son (K) did all of his schoolwork and I corrected it all. I then discussed the ones he got wrong and taught him the right way to do it.

I folded laundry with my SIL (S) and helped put it all away.

I helped with the cooking of dinner.

I did some picking up in my bedroom.

I played with the baby and took her outside for a short walk.

I washed a bunch of dishes.

S is going to help me fight the depression and overwhelming feelings of not wanting to do anything.

I will be helping her as well.

All in all today was a decent day. I am proud of myself for getting things done. I felt good about myself and everything I got done. It surprised me because it has been a while since I have felt like that.