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Friday, May 6, 2011

30 Years Of Chronic Pain

In pain..hiding from the world

I have been having a real rough few weeks since the yard sale. I've been stuck in bed every day, with high levels of pain and unable to stand for more than 3 minutes. To explain what I mean, the other night I went into the kitchen to get a glass of water. My bedroom is 25 steps from my kitchen. When I pulled out the ice cube trays (the ice maker in the freezer is broken LOL) I noticed the top one had 3 cubes in it, so I decided to refill the trays. So I quickly emptied the four trays into the ice cube compartment in the freezer (total time maybe 1.5 minutes if that long, its easy to empty these trays??) I then refilled the trays (4 of them) with water at the kitchen sink, which is literally 4 feet away and directly across from the fridge. By the time I got the 2nd tray filled all the muscles in my lower back were all knotted up real tightly, my pain had risen from a 5 to an 8, sciatic symptoms started (shooting pains down my legs), and my legs started shaking. By the time the fourth was filled I was at a 9 and my legs were shaking real bad with the left going numb and I knew my legs were about to give out any second. I managed to put the trays in the freezer without falling and then I had to sit on the floor of the kitchen. It took me 5 minutes of sitting on the floor, laying on my back, before I could get up and limp back to my bed.

This devastated me, hurt me emotionally and mentally, and made me feel totally useless. Which caused me to start thinking back over my life. This looking back has focused on my experiences with back pain and it made me realize that I have lived with chronic pain issues for 30 years now. I started having intermittent back pain around 11 or 12 years of age and it was made much worse when I was raped and the guy threw me up against a radiator (a metal heater) which I hit with my lower back. After that, the pain became more frequent but still wasn't every day. When I started working at 14, it became even more frequent and by 18 it was daily. By that point the only thing that varied was the severity of the pain and whether or not I got sciatic symptoms (numbness, tingling, shooting pains down the legs). The weeks of my period were always the worst, as were days where I worked on my feet (which was a lot).

I honestly don't know how I've made it this far and I don't know how much longer I can do this. The pain gets worse every year and I've lost so much from it. I have very few friends in r/l. I almost never go anywhere. I spend significant amounts of time stuck in bed due to pain and being unable to walk. I'm just so tired of it and terrified of what my life will be like 2 years from now, or 5 or 10. The desire to just give up and disconnect from life completely (not suicide, but unplug my mind..catatonic) has been extremely tempting and strong these past couple weeks.

I've become something I fought against for so long...I've become a burden to others.

I hate it.

I want my life back, any life. I want to be able to clean my house (not heavy housework, just dust a shelf or do a load of laundry without a pain crisis as a result), cook dinner, watch tv in the living room, sit at my computer at my desk (instead of daughter's old laptop in bed), make love to my husband (without crying after or having to stop half way through because my pelvis snapped) hell or to just be able to cuddle with him for a while (just the touch of his body against mine sleeping hurts too much, so no cuddles which sucks), go grocery shopping or even just run to the Dollar General down the street to pick up milk when we run out. I want to be able to drive my car (My Mustang) even just around the block. And a million other things healthy people take for granted every day. I want to be able to take a deep breath and not have muscle spasms from it. I want to be able to sit up in a chair and not have my pelvis feel like it is full of broken glass.

Hell right now I'd love just being able to get into and then out of the bathroom by myself. Without my husband having to either carry me in and out (including putting me onto [and then picking me up off of] the toilet) or having to walk behind me holding my waist or under my arms to make sure I stay upright.

Today I took a shower (with hubby's help and my shower buddy [shower chair], of course) and when I was clean and dry I went to get dressed and he had to hold my underwear and shorts for me to step into and pull them up most of the way for me while I held onto his shoulders because bending over (even from a seated position) just was not an option (and with kids in the house neither was sitting around naked). I almost burst into tears from humiliation, embarrassment, and just feeling like such a burden to him. Feeling broken and hopeless.

I want to be able to fill 4 ice cube trays without having to lay on my kitchen floor afterwards.

There are so many similarities between chronic pain patients and patients who suffer from chronic illnesses (Dysautonomia, POTS, Lyme Disease, etc.) yet even amongst other chronic illness sufferers, chronic pain patients can be excluded, judged, or dismissed as drug addicts. I've had chronic illness sufferers tell me that they do not want to associate with a chronic pain patient because they are afraid that their doctors will think they are drug seeking. Or the other person will think we are an addict, or judge us for using pain medication. This really bothers me so much more than having a healthy person dismiss me in this manner because I stupidly think that people who suffer from a chronic illness should have a better understanding of and more compassion for other people who suffer every day from some medical condition or injury that causes permanent pain. I've had people who are chronically ill tell me to just "suck it up", "it can't be that bad", "you just want to get high", "you're not positive enough", "but you don't look like you're in pain" and the ever popular "you're just an addict". It is disheartening to know that there is so much ignorance out there and it is only made worse by the misinformation being disseminated by the government and media.

I've mentioned before about the statement that was in my son's 6th grade science text book for school and what one of my daughter's science teachers told her class in high school ("No such thing as chronic pain", "no existing medical conditions that require daily use of pain killers" and " anyone who takes pain medication daily is a drug addict") and that is just one source of misinformation. News stories (on television, radio, and in newspapers) that say things like pain clinics are nothing but free drug clinics for addicts and similar things make things so much harder for chronic pain patients. It utterly amazes me as well as disheartens me when those judgments are stated by someone who is chronically ill.

But the worst ones of all are those who suffer from a condition that causes pain and choose not to use pain killers to help them deal with their pain yet they can still function fairly well. As a result they believe that this *is* true for everyone, and it just isn't true for everyone. They can often be quite rabid about their opinions, similar to how some people get when they quit smoking. Once they've quit they jump all over someone who smokes, and dismiss the smokers statements of how hard quitting is for them by saying things like "If I quit, then you can too. It's not that hard!". They will often lecture the person who is still smoking. In a similar manner, some people who can manage their pain without drugs will say things like "I don't take pain medication for my bad back so you shouldn't need any either". I naively think that someone who lives with a condition that causes frequent, constant, or chronic pain should have developed more understanding of living with chronic pain, and have more compassion for other chronic pain sufferers. They should know that not everyone has the same pain tolerance, and not everyone has the same pain responses to the same injury. For example, some people have little to no pain with a herniated disc in their back, whereas other people can have intermittent pain and still others have constant pain. Then the pain itself varies from shooting pain, to throbbing, to stabbing, and more. Some get sciatic symptoms, some do not. Some people will even have their disc return to normal over time, while others' discs will never be normal again.

Being judged, dismissed, or outright attacked (verbally) by another chronically ill or chronic pain patient is the worst. It is more mentally debilitating than receiving the same treatment from a healthy person. It is completely isolating and causes so much self-doubt and damage.

Even 12 years later, I still hear the words of my ex-husband when he told my why he was choosing his girlfriend over me and ending our marriage.."she's not broken like you are". I don't think a day will ever come where those words never repeat in my mind again.

People assume that pain management means taking enough pain medication to get rid of all the pain and be pain free. That is NOT what pain management is. Pain management is using different methods (of which medication can be one of those methods) to help the patient lower the pain to a level they can live with and still function fairly well. The patient still has pain all the time, it is just lowered enough that they can still do things despite the pain. Not everything they want to do, but enough to at least function.

We use methods such as diet, exercise, acupuncture, massage, meditation, chiropractic care, procedures such as steroid injections or radio frequency ablation and more in addition to pain medications to try and achieve pain management. For many of us, we try many different things before taking pain medications or along side of medication. Also for most of us, when we do take pain medication, we take the lowest dose we possibly can that will lower our pain enough that we can still function despite the pain we still feel, enough to take the edge off the pain not to make it go completely away.

Think about the worst pain you have ever felt in your life. Think about how that pain affected you at the time you were suffering from it. All the things you couldn't do anymore while feeling that pain. All the things you now had to do just to function such as planning out every activity to make allowances for your pain (showering, cooking, seeing friends etc.), or figuring out a new way of doing something because you had no choice. Now think about feeling that same pain every minute of every single day for the rest of your life. Now think of how that pain will continue to get worse over time. Now add in times where the pain spikes up real high to a point that you can not function as a result. Wouldn't you want relief from that pain? Wouldn't you want something to help lower the pain enough that you could function better? Wouldn't you think you deserve relief from that pain, that you should not have to suffer every single day?

I am not weak, addicted, a hypochondriac, or crazy. I am a woman who has permanent injuries to two of the worst areas of the body to have permanent injuries in as far as pain goes, the lower back and pelvis. There are NO positions that I can sit or lay in that do not put pressure on the injured areas of my body, and that pressure increases my pain. Sitting, walking, kneeling, crouching, and laying down all put weight and pressure on the pelvis. Even being hung by the wrists or ankles will strain the pelvis by pulling on the muscles that support the pelvis. As if having multiple permanent fractures in my pelvis and a sacroiliac joint that is bone on bone are not bad enough, I also have injuries to my lower back and nerve damage. (ligaments and tendons are removed from the inside of a joint when a fusion is attempted, so if the fusion fails the natural cushioning is no longer there, leaving the raw bones to grind against each other whenever they move) There are absolutely no movements that my body can make that do not use the muscles of my lower back and/or my pelvis and movement increases pain. Even the simple act of breathing uses the muscles of my lower back, specially if I take a deep breath. Go ahead and try it. Put your hands lightly on your lower back and take a deep breath, you should feel your back muscles move as your lungs expand. You can even feel movement on your hips, and sacrum/sacroiliac joints which are on either side of your sacrum (triangular bone that ends in your tail bone [cocyx]). Now think about how that would feel if your lower back was in constant pain and movement makes that pain worse. Breathing causes movement of those muscles, thus increasing the pain. Breathing, soemthing we do thousands of times every single day; something that we must do just to live; causing pain.

I am not weak. I am not crazy.


I am tired.

I feel alone.

I am so fucking tired of hurting so much. I really really need my pain levels to go back down. Please Goddess, please I'm begging you. Please, please give me a break. I'm really at the end of my rope and I am trying so hard to hold on but I feel like I am starting to lose my grip.

Its just so hard.

Helps With Everything

I know that this post is depressing, sad, and probably whiny. I know it sounds like I am in a complete full blown depression and that it looks/reads like I can't find a single good thing in my life. However, that is not true. Yes I am depressed, in a great deal of pain (currently at "do not touch me" mode, means pain level 9.9 and no touching my torso or legs because it will bring a crisis on). My daughter put Lidocane patches on my lower back and left SI joint. These do not help with the real deep down pain that the broken joint gives me, but when I'm in "don't touch me" mode, it does help a lot by numbing the skin a little bit. This decreases some of the pain and can sometimes prevent me from hitting a full blown pain crisis. I'm just so glad that she was awake at 3AM because I needed the help, though I am sad that she is awake at 3AM because I know she's awake due to her own back pain.

Anyway, I do know that I have good things in my life and the biggest and best good thing in my life is LOVE. I have the love and support of my family. My husband, daughter, son, sister-in-law, brother, and niece; all of whom live in the same house as me. My husband, Ron, is the best thing in my life. He is supportive, understanding, compassionate, so very helpful, and he doesn't judge me or dismiss how I am feeling. When it comes to the vow "in sickness and in health" of our wedding vows, he meant every word. In the past 10 years (June 21st will be 11 years living together, Dec. 4, 2011 will be our 11th wedding anniversary) he has always been there for me. He has helped me shower, dress, use the bathroom, cuddled me, massaged me, listened to me, held me when I cried, made me laugh, hugged me and every thing in between. He is often where I find the will and the strength to continue fighting my pain when I can't find any inside myself. I honestly did not believe that there were men out there who would not only be willing to live up to the "in sickness" part of wedding vows, but are capable of doing so without coming to resent or hate their ill partner. Ron has shown me, over the past 11 years, that I was wrong. That despite all the people who failed me, abandoned me, or replaced me due to my disabilities there are still people out there who truly know the meaning of the words "I love you" and "partner", "spouse", "best-friend". Without Ron I probably wouldn't be here today and I do not take him for granted. I am honored, grateful, and so very lucky to have him in my life. He makes everything better. I love you with every fiber of my being Ron and I look forward to every single day with you, no matter how much I hurt. Thank you for being who you are and thank you for choosing me to be your wife, lover, and best friend.

In addition to Ron, I have the greatest kids. Having grown up with a mother who suffers from constant pain, my kids tend to be compassionate of others. They are understanding of differences in people's physical abilities. They are helpful, kind, and supportive. I am so proud of my children and I love them so very much. I know how lucky I am to have such close relationships with my kids. My daughter, Sam, and I are the best of friends. We talk about everything! We help and support each other during pain crises, and (better yet) we do so during good days as well. Sam has already had to overcome so much in her life (she will be 23 on the 13th), yet instead of becoming distant, cold, and bitter, she healed and even thrived. I am so very proud of her! My son, Kyle, is 14 (will be 15 in June) so he has some of those teenager behaviors that arise from the normal pulling away in preparation to become an independent adult. However, we are still very close and there is not a great deal of rebellion, acting out, or arguments like can often occur during the tumultuous teenage years. I know this is a direct result of his being raised by me. He had to learn compassion, empathy, understanding and physical limitations at a very young age as it was my pregnancy with him that resulted in the permanent compound fracture of my pelvis (2 failed fusion attempts on left SI joint). I am so very proud of Kyle, he is an amazing young man.

So yes I do know that I have many good things in my life and I am blessed with wonderful people to love and who love me unconditionally.

I'm glad I chose to come back and edit this post to include this because I feel a little better mentally now. I guess I just needed the reminder that despite being in extreme pain and immobile right now, I still have the greatest gift any human being could ever ask for..and something every human being and acceptance.

Thank you Ron, Sam, and Kyle for everything you do for me, for being in my life, and most of all for loving me through thick and thin. I love you all so very very much!