Holidays! (Picture Heavy)

Christmas has come and gone. We've had a lot of rain so my pain levels have been fairly high. No pain crisis though, which is good. I managed to purchase Christmas presents and stay within my budget this year! Wahooo!! I didn't think that was possible, specially when I have a little one to buy for (my 2 yr old niece).


She had an absolute blast opening all her presents. She was a bit confused and overwhelmed by them also but she quickly got into the hang of ripping the paper off of each package. She then spent the day playing with her new toys. One of the things we purchased was a fake kitchen, dishes and play food for her. Since then she has cooked and "fed" her Mommy and me many times. She loves the plastic pizza slice and pretends to eat it. She also loves the plastic chocolate chip cookies and pretends to eat them just like Cookie Monster on Sesame Street, complete with all the growling type noises he makes. It always makes me laugh!
 

Here is Bridgette and her Mommy decorating the tree on the 23rd!

Here Bridgette is getting ready to put the Angel on top of the tree!

Here we are putting it up there with Mommy and Ahma (Aunt Missy)'s help!

Here she is ripping her presents open with Mommy behind her!

Here is my son Kyle opening the items needed for Xbox live! (Finally he said!) lol

Last but not least:
 

My daughter Sam opnening her presents!

My DH bought me a very nice perfume and a pretty bracelet that says Love is patient. Love is kind. Love never ends. He is very sweet! I managed to finally get him a book that he did not already have and he enjoyed reading it! We tend to focus on the kids before ourselves.
 
On Sunday the 27th I cooked a Christmas turkey dinner. We did it on Sunday because DH was going to be visiting his children on Christmas afternoon and my brother had to work Saturday, so Sunday was the first day everyone would be home. The dinner came out wonderful and everyone enjoyed it! I was hurting pretty good by the time it was done, but it was definitely worth it and I was very happy that I made it through cooking the whole meal. Specially since I did not manage to cook the whole Thanksgiving meal in 2008 and that really bugged me a great deal.
 
Since then things have been fairly calm around here. My pain is up but not too bad and my meds are controlling it fairly well.
 
I hope everyone had a wonderful holiday!
 
Happy New Year!

Up All Night

Earlier tonight Ron (my DH) gave me a backrub. When it was done and I tried to get up, my back went nuts. I'm not sure why either. It wasn't hurting any more than usual while he massaged it, nor did anything he did cause shooting pains or something like that. I'm guessing it was because I was lying on my stomach (with a pillow to support my lower back). Laying on my stomach or my back always causes me to hurt, but usually not as quickly and severely as it did tonight. Due to the pain, I've been awake all night. I did take my meds, which did help a little bit, but nowhere near enough for me to sleep. When I layed down to go to sleep the muscles in my buttocks, pelvis, and my left leg all decided they wanted to cha-cha and tango, which of course kept me awake.

Since I am awake anyway I decided to come out to the living room and catch up on my blog reading. I am behind because we were gone for 10 days, so now I have 355 unread blog entries in my google reader thing. This will probably take me 3 or 4 days to catch up on, but I will catch up. Since we do not have another trip planned anytime soon, I expect to be able to read other people's blogs, comment, and post to my own blogs more regularly. Before we went to Indiana, I was all caught up and staying that way but boy do blog entries and email groups fill up fast. I'd rather play catch up though, than just skip the entries.

On my stitching blog I have posted information for a give-away (A Pay It Forward [PIF] giveaway). It is open to anyone who wishes to enter, not just stitchers. Though due to the nature of the PIF being a crafty one, it would probably help if those who sign up do a craft of some sort, or they can send gift certificates instead of a finished craft item when it is their turn to do a PIF and thus continue to Pay It Forward. Anyway, if you are interested you can find the post here http://raven-stitches.blogspot.com/2009/12/pif.html To enter the drawing all you have to do is post a comment on that entry and please be sure to include an email address so that I can contact you if you win. Thank you!

I'm Back

I just got back from visiting family for Thanksgiving. DH and I went to visit his family for the holiday. It was a 17 hour car ride, which of course wreaked havoc with my back. Though, it wasn't as bad as it has been in the past. I was hurting pretty good when we arrived, but I wasn't in a pain crisis and I could still limp around. This surprised me, but it was a nice surprise.

Thanksgiving was wonderful! I love my DH's family and they love me. We had a lot of fun, great food, and wonderful company. DH had to go to a class for his job on the Monday after Thanksgiving, so I stayed at his dad's house while he was gone. I went shopping with my mother-in-law, drove to WI to pick up my daughter (who was meeting her boyfriend for a few days since we would be closer than we usualy are) and my mother-in-law went with me (drove most of the way there and back also). We had wonderful conversations during the week and lots of laughter.

We had dinner at his sister's house the night after Thanksgiving I believe it was. I'm not 100% sure because I got sick. For 3 days all I did was cough a lot and sleep almost non-stop. Around noon at my DSIL's house, I went to lay down and slept until Ron woke me up at about 5 or 5:30pm. The dinner was wonderful! My DFIL made his baked beans and my DSIL made a delicious ham. There was a lot of talk and laughter during the meal. I love his family a lot! After we ate we went back to his dad's house and I went back to sleep.

DH returned on Friday the 4th of December, which was our 9th wedding anniversary. I never thought I would have a relationship with a man that would last this long and still be happy and healthy. I was wrong and this is one of those few times that I am so glad to be wrong LOL We've been together for 9 years and I love him more now than I did at the beginning. He is always there for me, listens to me even when he doesn't really understand what I am rambling about, makes me smile, doesn't hold my disabilities and pain against me, doesn't treat me like I am less of a human being, he is just wonderful in most areas. I am looking forward to our next 9 years together!

We stayed 2 days longer than we had originally planned because the family had scheduled their annual Christmas Dinner (family) for Saturday the 5th. This is earlier than they usually do it and Ron thought that it might be because they knew he was going to be up there around that date. So we stayed and went to the dinner. It was a lot of fun and I got to meet even more of his family. They all seemed very nice and I got to talk to quite a few. Sadly we had to leave a bit early because my back freaked out on me. I had woken up that morning with lots of pain and sciatica which normally would have kept me home, but I did not want to miss the dinner so I went anyway. I brought a pillow with me to sit on in the hopes that it would keep the pain from going too high. It worked for a little while, but not as long as I wanted. I felt so bad but when the pain hit a 9, I had to leave. Ron, of course, went with me to make sure I went to bed when we got back to the house and I feel so guilty. Some of the family members that were there were people he had not seen in 20 years or so and he had been enjoying conversations with them. He said he wasn't upset, that he was happy that I had gone despite a high level of pain to begin with, though he was a tad annoyed that I had worked so hard to hide the pain I was in.

We started home that night and I drove from just a bit after Nashville to our house, about 5 hours. When we were about 2 hours from home, Ron was finally asleep in the backseat and my pain went way up. I chose not to pull over and wake Ron up because I knew how tired he was, so I pushed myself a bit and drove all the way home. I hit pain crisis when I got out of the van at home and both legs wouldn't hold me up. We went to bed when we got home and slept for a while.

We've been getting back into the routine of things around here. I love visiting his family, but its still nice to be home. I am very grateful that my chronic pain didn't interfere with our visit as much as it could have and has in the past. All in all my back and pelvis held up pretty well and I am very glad!

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.

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 http://aiminglow.com/2009/11/hope-for-anissa/ for other ways to assist the family if you wish to.

You can learn more at Anissa's first blog: http://www.hope4peyton.org/

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!

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.

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!

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

Woot! two days in a row..wow..didn'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 :)

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

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 crap...my pain is buried under the illness so I don't feel too badly in that department! lol

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 wheelchair..it'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!

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!!)

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.

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 "Shoes..shoes", 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.

Pain Comparisons..me 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!

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!

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 it..you 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 http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
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.

The War On Drugs

I agree that we should fight illegal drug trafficking of heroin, cocaine and other drugs. However, the war on drugs focuses more and more on doctors and chronic pain patients. It leaves patients with no access to adequate pain control medication and doctors terrified of going to jail if they write a prescription for pain medication.

Having lived with chronic pain for many years now I have seen first hand how the war on drugs has changed the way doctors have treated me over those years. My current doctor told me that he is now required to follow a set of guidelines created by the DEA regarding writing prescriptions for controlled substances. Where I live a general practitioner is not allowed to write for any controlled substance medications period. Surgeons are only allowed to write for controlled substances in specific amounts, for no more than 3 months time, and not narcotic medications regardless of the surgery performed or the condition of the patient. They are now required to force all patients to undergo mandatory drug tests and there are ways to fail this test that do not conform to how one uses the medication. For example, a patient given a medication on a PRN (AS NEEDED) basis, if that patient comes up on the urine test without any drug in their system they are discharged as a patient under the belief that they sold or gave their medication away. Even if they bring the bottle to show they have all the pills they should have. All because they did what they were told and only took the medication when they really needed it badly, thus not every single day, as they were TOLD to do by the doctor. They then get puished for this.

The DEA guidelines my doctor spoke about leave no room for "as needed" medication, no room for the doctor's opinions. Flat out, everyone is assumed to be a drug addict and these guidelines are set up to label each person that way eventually.

The DEA should NOT be involved in managing patient's care. That is the province of the medical profession and not law enforcement. I am terrified of the day when I will no longer be able to get pain medication at all, and I know that day is coming. I live in severe pain every single day even with medication. I take as little medication as I need to in order to survive, which leaves my pain level higher than it needs to be and leave me unable to do the things I should be doing.

This video caused me to cry because I too have felt just like Mr. Redman. Pain that is not controlled properly, suffering every day, fighting for my rights with the very people whose job it is to HELP patients, and just wanting to die as my rights get taken away by out of control governmental officials with no real boundaries on their "control" such as the Drug Czar. (Wonder how fast the czar's tune would change if it was their spouse, child, or themself that was living with such life destroying pain)

http://reason.tv/video/show/when-cops-play-doctor

Watch this video, it gives a true view of the effects of the drug war on the medical profession and their patients.

Emotional and Psychological Responses

Last night I said I would write a little bit about how living with chronic pain has affected me emotionally and psychologically.

I was 24 when I was told that I could not work anymore. At the time I was working as a pharmacy technician in Children's Hospital, Boston. I loved my job and was finishing final preparations to attend Mass. College of Pharmacy to become a pharmacist. My job was so very rewarding to me and made me feel very good about myself. Like most adults I viewed myself in part based on my job and how well I performed at that job. My profession was very much part of who I was and how I saw myself. To have that taken away from me was devestating. I had been raised to be independent, to work and support myself. Suddenly here I was unable to do those things anymore. My self-esteem took a major blow. So I turned to being a good stay at home mother and wife. But I still struggled from time to time with feelings of worthlessness and frustration.

When my condition got worse after my second child, I ended up spending a year mostly bedridden. I had little to no pain control during that time. I could not walk, I could not drive the car or go anywhere and I was in constant pain. When they finally got around to doing the surgery I did well for a few months, until the fusion broke. Being bedridden took away what self-esteem I had been able to build up because I could no longer function as well at my job (what I considered to be my job). Cleaning, running around playing with the kids, running the errands, cooking and everything else were no longer things I could do at all. On top of this I had an infant, my son, to take care of. For months my bedroom had just the bed in it, to make it safe to have the baby in the room with me. His crib, high chair, and toys were all in the room as well. This way I could feed him, play with him a little bit and watch him from my bed.

After the second fusion attempt I had very high hopes to once again be able to function and do all the things I enjoyed doing, but it didn't work out that way. I am not stuck in bed all the time, but I do have many days where I can't walk very well or am in so much pain that I have to stay in bed laying down. This has wreacked havoc on my self-esteem. To no longer be able to do many of the things I enjoy, to no longer be able to do the things I needed to do to care for my family and even myself just tore me up inside. I've struggled since then with bouts of depression, and self-incrimination. To have so many things that made me feel useful taken away from me with nothing to replace them (such as changing jobs; lose one job but gain another so the identity as a worker changes but remains intact) but days of pain and increasing disabilities as the years pass, is enough to cause depression.

Right now I am mostly struggling with finding myself having no desire to do anything except sit around staring at the television. Part of this is I fear causing higher levels of pain. Part is having too many days where I am unable to do anything (pain crisis days, or days where my legs don't work). Part is the chemical imbalances that are created in a person's body when they live with constant pain. My doctors have told me that chronic pain reduces serotonin in the brain, which is believed to be one of the chemicals that controls mood and causes depression when it gets unbalanced.

I am waiting for my insurance company to approve the new anti-depressent my doctor has put me on. While I wait I am doing my best to fight that apathy, sadness, tiredness, insomnia, increased pain, and lack of enjoyment in anything. This blog is one way of doing that. I know that right now it doesn't seem that way since all my posts so far have been negative as I attempted to give some background for possible readers. I've also forced myself to participate in two cross stitch surprises for friends. I normally enjoy cross stitching a great deal and I am good at it, but since I no longer enjoy doing anything, I don't enjoy stitching. I've found though that if I force myself to do something, I will find myself enjoying it after a little while, or glad that I did it once it is over. After finishing the first stitched piece I didn't get that whole body fantastic feeling of accomplishment that I used to get, but I did get some good feelings which made me glad that I did it.

To help me recover my self-esteem when I was healing from abuse in my past, I would make lists of things that I did right that day. This was to train my mind to see not only those things I did wrong, but also those things I did right. It helped me to have a more balanced view of myself and my actions/activities. So I'm going to try something similar here.

I am grateful for having such a wonderful husband. He is so very supportive and loves me despite my physical disabilities and accepts me no matter what.

I am grateful for having such wonderful kids. My daughter, who also suffers from chronic pain and my son are wonderful, caring, loving people. I am proud of them and grateful for their assistance when I have needed it.

I went to the store today even though I did not feel like I wanted to go out I went anyway. I am glad that I did.

I continue to decrease the amount I smoke in a day.

I did wash some dishes today, finished washing the cross stitch square, straightened up the bathroom a little bit, and moved a load of laundry into the dryer then started a new load.

I may not have gotten as much done as I wanted to, but I did get some things done and that's better than nothing.

Now I have to pick a design for the other square and will hopefully start stitching on it tomorrow.

Ron, thank you for everything. I don't know how you put up with everything and remain as calm as you do. You are my strength. Without you I am sure I would not want to continue fighting to live despite everything instead of just existing like I have been. I love you with everything that I am and I feel blessed to know that you love me just as much.

Chronic Pain Affects Daily Life

I have had many people over the years tell me that my pain can't possibly be as bad as I say it is. That it can't possibly affect my life intensely enough that I can not work. That it can't impact me emotionally and mentally deeply enough to cause depression. Depending on who is saying these things (and past experiences between that person and myself) and the situation in which they are being said, is how I choose to respond. With those who repeatedly says things like the statements above, I just ignore it and change the subject while hiding how deeply hurt I am and hiding the self-doubts and self-incrimination that occurs as well. If it is someone that is a new friend to me (or new acquaintence) then I will take the time to explain my conditions and take it from there.

So I thought it might be helpful to others if I start giving examples of exactly how my conditions have affected my daily life. That way maybe they will learn just how deeply chronic pain can affect a person, regardless of the condition that causes the pain. Not all disabilities are visible, but that does not mean they have less of an impact on the one living with the disabling conditions. I personally think an invisible condition has more of an impact on the one living with it because people just can't accept that something they can't see can affect another person's life so drastically. Instead they look at the person and see someone who looks "normal" and they can't reconcile what they see with what they are being told. Whereas if you see someone who is missing a limb (for example), or carrying an oxygen tank around with them, or in a wheelchair people more readily accept that the person is suffering because it is visible.

I wake up (whenever as I don't have a set time due to frequent insomnia) and depending on my pain level upon waking I have to sit and think of all the things that need to be done and decide what is most important. Then I have to figure out a way to do those things with minimal impact on my pain levels. It is a very rare day when I am physically capable of getting everything that is on my "to do" list done in a day. More often than not I am lucky to get half of it done.

Cleaning: I am not supposed to mop floors, move or lift anything over 10 pounds, I can not stand for more than 15 minutes so I have to work in stages by cleaning for a few minutes then sit down for a few minutes to guage my pain level. Many times I have to stop before the cleaning is done. Moving laundry is very difficult because carrying baskets of clothes is hard for me to do. Instead I have to push the basket accross the floor using my foot, or kick the clothes themselves into the laundry room. I can not kneel down and scrub a bathtub. I can not move the couch, chairs or tables to vacuum underneath them. Heavy cleaning (such as Spring cleaning) has to be done with other people to do the majority of the work.

Playing With My Children: I can't hold a bike and run behind them to teach them to ride the bike. I can not run around so baseball, basketball, or any other game that requires running is a no-no. The inability to stand for 15 minutes also affects many games such as board games, or sitting and reading, or watching a video. Children love to run around, play tag, hide and seek, and other physical games. They quickly get upset that we have to change the "running" part to "walking quickly", its not as much fun. Playing catch is done with both of us sitting down, so I don't have to bend over or chase the ball. Board games just require that I get up and move around for a few minutes. Anything that requires a lot of running around, someone else has to do it leaving me on the sidelines cheering them on.

Cooking Meals: For me my pain is simple, the more I move, the more I hurt. So by the time to cook dinner rolls around ( 4:30 to 5:00) I am often in more pain than I was when I woke up that day. More often than not someone else has to cook dinner. The only way I can guarantee that I can cook dinner is if I do little to nothing all day (no cleaning, or moving of laundry, or running of errands). This results in ordering take out food at least once a week on average.

Driving: I am banned from driving a standard shift (manual transmission) due to the fact that my left leg can just stop working without any warning. This means I can not move the leg or even wiggle the toes on my own. To move that leg I have to grab it and pull with my hands. Getting into and out of a car causes one to twist their back which is painful for me. I have to get out of a car every 30 minutes and walk around, so any car trip takes a lot longer than it would if I were normal. The vibration of the car often increases my pain because it causes my pelvis to vibrate.

Sexual Intimacy: For me, because of my injuries, sex is sometimes painful during the act itself, but it always results in increased pain levels after. After I make love and my body returns to "normal" my pain level goes up. There are many times where the day after I have had sex I am stuck in bed because my leg won't work or I am in a pain crisis. (pain crisis: uncontrolled extreme pain) This results in fear of sex. Constant pain is very tiring and it lowers the sex drive anyway so it is not a frequent thing for me to desire intercourse anyway. Even things like cuddling with my DH or spooning (laying with my back against his front) to sleep can be painful. When my pain is real bad just having that added little bit of pressure of his body touching mine hurts too much.

Running Errands: This is affected by my inability for stand too long, walk too long, and drive/ride in the car. When I do run errands I have to carefully plan how to get as much done with as little walking as possible, as well as doing the errands with as few instances of getting into or out of my car as possible. Pushing a cart that has a lot of items in it is difficult for me to do as the cart is heavy and thus it hurts my back to push it, though having the cart to lean on does help if my legs start to tremble.

Before the two fusion attempts failed, my pain level was fairly low and instances of intense pain were not as frequent. I could still do most things that a non-disabled person could do. After the two fusion attempts failed however, I ended up with greater restrictions on my abilities. So I went from being able to run errands, play with my children as much as I wanted, cleaning the house, cooking the meals, doing the grocery shopping etc. All the things other stay at home mom's would do, with only occasional interruptions or days where I had to stay off my feet. To where I am now, unable to do most of it unless I am willing to deal with the increased pain that will result from any of those activities.

When I need to do something, I have to weigh it against how much mental and emotional energy I have to deal with the increased pain (or outright pain crisis) that my activities will give me. Knowing that I can't do most of the things I want to do on a regular basis is very depressing.

This is already very long so I'll get to the emotional effects tomorrow.

Insomnia

Another side effect of chronic pain is insomnia. It is horrible when it shows up in the manner it has shown tonight. I'm tired and sleepy, but the pain running accross my lower back (at waist height) and the pain in both SI joints (deep throbbing ache with shooting stabbing pains down both legs) keeps me awake. Laying down hurts after a few minutes as does standing, sitting, leaning against a wall, any position. Being awake in the middle of the night just throbbing with pain and wishing it would go away is very demoralizing, disheartening and depressing. Being like this in the middle of the night is the hardest to deal with for me. It's lonely and the dark is opressive. Sometimes it makes me feel like I am the only person in the world and that is terrifying.

Many feelings and thoughts that occur when I am stuck in a period of high pain levels do not make sense, they are not logical. Trying to force them to make sense doesn't work sometimes, though speaking those illogical (even crazy sounding) thoughts and emotions does make it better. The release of putting them out there, getting them outside of my head and heart, outside of *me* somehow ..that does help a great deal. Like the pain, these thoughts tend to repeat themselves over and over and I am sure that my depression is only making this cycle worse.

It is only 12:15 AM (central time USA) but I can already tell that I will not sleep very well tonight. I really do want to find a hole and just crawl in and hide if I can leave my pain outside of the hole. 15 minutes pain free would be marvelous! F*** I would settle for 5 minutes without pain.

Sitting here typing through tears is not fun at all. Lets see..positive..something positive...hmmmm..

I am grateful to have a husband who loves and supports me even with my physical issues.

I am grateful to have children who love me.

I am grateful to have good friends who love and care about me.

I am grateful that I can still walk even if it does hurt me to do so.

I am grateful that I have surpassed the doctor's statements about needing a wheelchair by 5 years and counting (in 1999 I was told I'd be in a wheelchair within 5 years..so far I can still walk).

Ok time to try to sleep again.

Anger and Frustration

There is one side effect that chronic pain causes and that is the feelings of anger and frustration. Anger that the pain interrupts your life. Anger that it is there all the time. Anger that it gets worse sometimes for no reason at all, it just does. Frustration because you can't do all the things you used to do and worse you can't do everything you want to do right now. Things that used to be important to you, have to become less important or it will drive you crazy because you can't do those things.

My pain level is pretty high today and it feels like it is going to get worse before it gets better. Right now I am at a 7 (2:45 PM central time) and both joints popped a few minutes ago leaving me with that deep throbbing pain and occasional stabbing pains shooting out from the joint. The muscles in my left buttock and the back of my left thigh are jumping around and twitching with spasms, occasionally causing numbness and tingles to shoot down my leg all the way to the ankle. Though I do find it rather amusing when my leg kicks out without my telling it to.

I try to find it funny and think of things like the Rocketts and how they all kick in synch with each other. When the bones pop I will mumble "snap crackle pop..riced missy" or "snap crackle pop f*** you too". I do find it amusing that my body makes such weird noises and how others can hear it and then give me funny looks. Once when I was in Wal Mart and as I walked I could feel the bones grinding against each other and popping and snapping. I noticed someone doing a double take as I went by so I turned my head and looked; there were 5 or so people just watching me with these "WTF?" looks on their faces. I asked the closest one why and she said "you sound like Rice Krispies or something". I explained what it was and was a bit shocked to realize that it was loud enough for other people to hear. But that is where I got the rice krispies jingle from. It is not easy to keep a positive outlook though.

I'm tired. I am so tired of fighting this every day. I'm tired of looking around my house and seeing all the things that need to get done and not being able to do them. I just want to scream, throw things, give up; but I can't. I'm tired of not being able to do all the things I want to do for my children and now my niece. It rips my heart open everytime I have to tell her that I can't hold her because I hurt too much. This also reminds me of having to tell my son the same thing when he was little. Luckily though, children are adjustable and they usually adjust to being cuddled and held only when I am sitting down rather than when I am standing up. This is the compromise I had to make so I can still cuddle the little ones, and not increase my pain too much by doing so. There are days where I can't even do that much, though I will do it anyway.

It has been a rough couple of days and its going to get rougher as that time of the month has started.

Wow..being able to write that out has helped. I'm still frustrated and upset, but not as intensely as I was when I first sat down. This is a good thing I guess.

I need to go lay down for a bit, get the weight off my butt.

Btw: I have been responding to comments in the comment section. I read every comment and I really do appreciate them, thank you.

Doctor Visit Day

Today was my doctor's visit for the month. As usual I ended up sitting in the waiting room for quite a while (hour and a half) in those very uncomfortable chairs. I brought a small cross stitch piece with me, but I can't say much about it as it is going to be part of a surprise for someone. I got the main part of it done while waiting. Then I got called back. No urine test this time, which was surprising as I haven't had one in the last few months. My doctor decided that he was going to give me 3 months worth of prescriptions so I wouldn't have to come back until the end of January 2010.

As I promised my daughter I did talk to the doctor about changing my anti-depressant because I know the Zoloft wasn't working anymore. Considering I have been on it for many years, I can't say I am all that surprised. So he switched me to that new medication Pristiq. I've never had an SNRI before and from what I've been able to read about it so far, there aren't any interactions with my other daily medications. That's good because I need those meds.

The visit went well and for once there was no piking and prodding just to see if my back and pelvis still hurt. Usually I get poked and prodded every month and asked "Does this still hurt?" while the doctor presses deeply into every painful spot in my lower back and pelvis; occasionally I end up falling because it hits the sciatic nerve and my leg just gives out. After I get home for the appointments I am usually in a great deal of pain and have to go lay down for a while to make is stop. Today I arrived at the doctor's office at a 4 on the pain scale, and left at a 7 so not so bad as usual.

For anyone that doesn't know what I mean by giving numbers for my pain I will explain. Some doctors (mine included) rate pain on a scale of 1 to 10. 1 being very little to no pain and 10 being extreme agony/worst pain of my life. So the lower the number, the less pain I am in and vice versa. Right now my pain level is a 5, which is not too bad.

I did not manage to meet all 3 goals for yesterday, but I did get 2 of them so that's better than nothing. I did manage to shower today, go out (to doctors and ran a small errand) then I needed to lay down.

I can't write right now as my niece is up and wanting my attention. I think she is upset that I went out and didn't take her with me earlier because she's being a tad clingy now. That's ok though, I love the cuddles. They feel so good and I know she'll grow up quickly and not want to cuddle so much.

Later all

A New Beginning, I Hope

I live with chronic pain due to issues with my lower back, sciatic nerve, and a failed fusion of the left sacroiliac joint (which means I live with a permanent compound fracture of the joint to the left of my sacrum, in my pelvis). This pain exists every single moment of every day of my life for the past 13 years. Before that the pain was more intermittent. I take medication for my pain on a daily basis, without these medications I would not be able to function at all.

The injuries to my back and pelvis affect my mobility and what I can physically do or not do. They affect every aspect of my life from my relationships, to my moods, to doing simple chores, to dealing with stress, and everything in between.

Right now I am struggling (and failing) to overcome the depression that has become so much worse over the last year. I find myself having no desire to do anything or go anywhere. This is not good and I have to accept that my anti-depressent medication has stopped working. Until today I did not want to accept that and refused to even think about it. I get so tired of having medical issues all the time. I just want it all to go away! But, it won't, and the time has come to get off my ass and deal with it rather than continue trying to hide from it. So when I see my doctor again on Tuesday I am going to request a change in my medicine and hope it helps.

I will be using this blog in many different ways.

• Motivation to get on a schedule and stick with it
• A place to vent my feelings
• A release for all the thoughts and emotions that run through my head all the time
• A way to reach out and connect with others in a similar situation to mine

I don't really know if this blog will do any good, but it can't hurt. I used to keep a journal (many notebooks that I still have) and it used to be a major help for me when I was dealing with other major problems. As my back got worse and my pain got worse, I stopped using journals as much and now I almost never write in one. I thought maybe doing a blog might work.

I will write whatever comes to my mind on this blog so be forwarned, cursing will occur, as will adult topics such as how chronic pain affects my libido; this is why I listed it as adult content. I'm not going to post porn or anything like that, but I may post about how fear of increased pain and deep depression have caused me to lose desire for sex and even fear it if that happens to be the topic that is bothering me.

I hope to use this blog as a way of helping me get into a schedule, to motivate me back into some kind of a real life, rather than just existing and vegging all the time. I miss going places, doing things, being active, taking care of things..all things I have stopped doing because my pain levels got so bad and went improperly treated for so long. I'm going to start off real slow. It may seem silly to others but its not silly to me. I am going to start out trying to do the following every day

• shower
• do laundry (at least 2 loads washed, dried and folded)
• take niece for a walk or play outside for a little while

It doesn't seem like much, but considering I have little to no desire to do any of that at all (or anything else for that matter) it is a lot. I will add more things as it gets better. I don't expect this to be easy. I expect this to be very difficult and I expect to backslide, get angry, etc. But I will try real hard to stop letting depression and pain rule my life.

I want my life back.