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

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

Monday, May 31, 2010

One Word Meme

This sounded fun, so I thought I'd do it.

The only rule is:

Not as easy as you might think…
1. Yourself: hurting
2. Your boyfriend/girlfriend husband: playing
3. Your hair: upswept
4. Your mother: wonderful
5. Your dog: n/a (no dog)
5a: Your Cat: outside
6. Your favourite item: stitching
7. Your dream last night: scary
8. Your favourite drink: water
9. Your dream car: Mustang
10. The room you are in: Living room
12. Your fear: alone
13. What you want to be in 10 years: Healthy
14. Who you hung out with last night: DH
15. What you’re not: uncaring
16. Muffin: blueberry
17. One of your wish list items: fabrics
18. Time: evening
19. The last thing you did: ate
20. What you are wearing: pajamas
21. Your favourite weather: Autumn
22. Your favourite book: It
23. The last thing you ate: sandwich
24. Your life: Good
25. Your mood: down
26. Your best friend(S): wonderful
27. What are you thinking about right now? pain
28. Your car: Mustang!
29. What are you doing at the moment?: Blogging
30. Your summer: hot
31. Your relationship status: Married
32. What is on your TV?: Elmo
33. What is the weather like?: overcast
34. When is the last time you laughed?: today

Friday, May 28, 2010

Another Week Gone

Well here it is Friday the 28th of May. I can't believe May is almost over already! It seems like yesterday was May 1st. Damn I am getting old. LOL

I've done pretty good this week about doing chores around the house. I've done laundry, washed a couple floors, vacuumed, emptied trash, cleaned the bathroom and a few other chores. I am proud of myself for doing them. They did, of course, increase my pain level but I didn't care. Everything increases my pain level and doing nothing in the hopes of not increasing my pain is not a good thing. It just isn't healthy and leads to me thinking badly about myself. My back and pelvis are what they are and there isn't anything I can do about it. It is time to start getting on with my life and the things I enjoy. Keeping my house fairly organized, clean, and bills all paid is something I prefer to do. I can't say I really enjoy doing it because housework isn't all that fun, but I do feel proud and satisfied when it is done. I can relax easier in a house where I don't see a hundred things that need to be done every time I look around.

Today was a focus on laundry day and I have gotten a bunch of loads done. Then I made DS bring his dirty clothes to the laundry room, which of course makes it look like I did no laundry at all LOL

DH took the day off so he would have a 4 day weekend. It was nice to have him home today. We did some cuddling and talking. Last night we had a great conversation and lots of laughs about Terry Pratchett books. He has wanted me to read them for years. I had tried a few years back but just didn't enjoy them. However, I tried again this past week. I read Reaper Man first and found myself laughing out loud at parts of it. Reading parts out loud to DH (like he does to me) so we could laugh together. I really enjoyed the book. I finished it in 2 days and started another. I am enjoying this one as well. This made me wonder if it was the depression that kept me from enjoying the books? It probably was since I mostly stuck to re-reading old books (usually Stephen King) most of the time. Books that are old friends, instead of being open to new authors. I have always loved reading and was always willing to try a new author. But I realize that for the last few years that just wasn't true anymore. Amazing how much of a person's life depression eats.

I am so grateful for the return of my enjoyment in writing, thinking, and reading the way I used to. I feel more like myself than I have in a long time.

Monday, May 24, 2010

Acceptance, Rage, Grief and Mental Maelstroms

My mind is running in circles (in a good way), something it has not done in at least 3 years I think. I used to be very introspective, thoughtful, insightful and all that stuff. My mind used to run constantly, causing me to write long rambling journal entries that just followed those thoughts, asking and answering questions while I delved deep inside myself to figure things out. Many times those thought marathons and diarrhea of the pen were focused on others; my children, my spouse, friends, and people in general. I loved it. From those times came many essays about many different topics and those essays would help others understand a topic better or see it from a different point of view and thus understand it even if they didn't agree with it.

I could fill one of these in 3 to 6 months or less
hence the hundred or so I have for a 12 yr period of time.

I have written some essays recently, but none of them were preceded by that whirling mind thought process of before. Before what you ask? Before my condition got worse when I re-fractured the already broken joint and caused more damage thus more pain. Which in turn, caused decreased mobility and serious grief and rage. Grief for what amounts to the death of who I used to be and couldn't be anymore. Rage for the accident, my increased pain, unfairness of it all, at the person and situation that caused the accident, rage for the fact that the injury did not have to happen at all, and more.

I have realized that I turned my mind off and stopped being who I really am. I shut down a little and have refused to accept what happened and its results. Instead, my mind has focused more on what I can not do anymore, what I have missed out on (like teaching my son to ride a bike), and how much I hurt. This, of course, was made worse by depression.

This whole thought process was started by asking Ron a simple question "Do you think I have accepted my condition?" and his answer was "no".

He is right.

So now comes trying to stop the anger and self-defeating habits (both behavioral and mental) that have become my "norm".

I get very tired of constantly having to put myself back together again. This will be the 5th time (I think) in my life. At least this time I am not completely gone, just a little scattered. 

Wednesday, May 19, 2010

But You Don't Look Sick

Here is one of the 4 essays I mentioned in my last post. I did the rewrite tonight.

But You Don’t Look Sick
M. Hull © May 19, 2010

Chronic Pain (CP) patients hear a lot of things from other people. These statements run the gamut from slightly annoying to downright hurtful to dismissive to humiliating to derogatory and everything in between. There are two such statements that seem to be pet peeves for most CP patients. They are “Anyone who takes pain medication regularly is really a drug addict” (there are many variations on this theme) and “But you don’t look sick/in pain” is the second one. Is there an official face, costume, clothing or body language for people who are sick or in pain? No there is not, yet people insist on judging our condition and pain levels by the way we look. Just because you can’t see it does not mean it is not there. Though there are not any universal appearances for CP patients, there are signals people can see if they’d bother to actually look for them. CP patients often try to hide their pain for self-protection, but there are clues.

“The eyes are the windows to the soul” is a saying we have all heard. In a CP patient, the eyes are often a window to seeing how bad the pain is at any time. Sadness, frustration, anger, weariness, wariness, and other emotions can be recognized in the eyes. If it is someone you have known for some time, reading their eyes will be a bit easier for you. But for those who don’t know, some cp patients will widen their eyes when they get a sudden sharp pain or a sharp increase in pain level. The pupils will dilate in some people. Also a cp patient will often close their eyes for a couple moments as they mentally prepare to deal with an increase in their pain (often accompanied by slower deliberate breathing). Many of us have signs of being tired such as bags or shadows under our eyes all the time. Those bags or shadows can appear larger or darker during tough times or flares. This is caused by a lack of restful sleep due to pain. Sometimes our eyes will be red and or swollen from crying because the pain was just too much and caused us to cry (pain crisis). Some try to cover these signs with makeup, causing the amount of makeup itself to become a sign of how they are feeling. For example, if a friend suffers from CP, but doesn’t usually wear a lot of makeup, shows up with concealer or foundation under their eyes, it is most likely to cover up the physical results of pain induced insomnia or crying and thus a clue to their pain level. Our medications or unshed tears can often make our eyes appear glassy or dull, which also serves as a clue.

A CP patient's breathing can also be a very obvious signal of their pain level. Many of us try different breathing techniques to try and control our pain. Long slow breaths in through the nose then blown out through the mouth are just one technique. Many CP patients will automatically start doing these breathing exercises when their pain reaches a certain level, or we are hit with a sudden unexpected burst of pain or increase in pain level. Another is when the patient starts paying attention to their breathing and deliberately takes deep breaths, releasing them slowly (sometimes with eyes closed).

A person’s face shows multitudes of emotions with both obvious and subtle changes. A big happy smile is an obvious indicator that a person is happy or in a good mood. For CP patients our faces also give clues to how much we hurt. In response to pain some will press their lips together (the tighter the pressing, the higher the pain), draw their eyebrows together causing wrinkles to appear between them, close their eyes and focus on breathing, frown, or other signs. For some the more pronounced those wrinkles are, the more they hurt. Some will clench their jaw tightly and possibly grind their teeth, again how tightly they clench or intensely they grind their teeth serves as a signal of how much they hurt.

How a CP pt moves also belies their pain levels. The higher our pain levels, the more carefully we move. Depending on what injury or disease causes the pain you can notice limping, taking stairs one at a time (with both feet on same step, like a toddler), using the non-dominant hand, trembling, twitching or jerking of the affected limb or torso. The person may start flexing their fingers or stretching/shaking an arm or leg to relieve pressure, numbness, or pins & needles sensations that come with nerve damage. People with back issues will often try hard to not slouch or bend over, sitting or carrying themselves as straight as possible and doing their best to not bend their backs at all. People with knee injuries will sometimes walk without bending their knees, lean against a wall rather than sit down or other things that will keep them from bending the painful joint. A CP patient may start holding or rubbing a painful spot, sometimes without being aware of it. A CP patient who is in a high level of pain will find a comfortable (or as comfortable as possible) place to sit and stay there; only getting up if they absolutely must. Many, when sitting, will shift positions frequently trying to ease some of the pain. How a CP pt greets you or says good-bye will change depending on their level of pain. Someone who usually hugs you in greetings or farewell, won’t hug the same way, if at all, when their pain is real high. They may not stand up for an introduction or to say hello when you arrive. Movement often increases pain so when their pain levels are high, the CP patient moves around less often. There are many other clues through body language if one bothers to look for them, they can be found.

The tones in a CP patient’s voice often change with their pain level. Some may talk louder, others talk softer. Their voice may become more tense or hesitant. Some may even snap at you without realizing it. They often get an undertone when they speak that can reveal their pain level or anxiety.

Even the clothing a CP patient wears can give clues to their pain level. CP patients tend to wear clothing that will be the least restrictive, apply the least pressure to their body, and have the least impact upon their pain levels. Most often they are items that are easy to put on and to get off and do not apply pressure to the parts of our bodies that hurt. We often wear low heeled or flat comfortable shoes that will properly support our feet. When at home we may stay in our pajamas because they are usually the most non-restrictive and comfortable clothing we own.

Most of us try our hardest to hide our pain levels from others, but our bodies give us away. If you have a friend or relative who suffers from CP you can learn to interpret their signals and thus realize how much they are hurting. The signs I mention within this essay are only a few and meant to give a general idea of things to look for, thus disproving the “you don’t look sick” statement. Each person is different, so each person’s signals will be different. I tried to include fairly common signs. If you pay attention and take the time to learn the tel- tale signs of the pain your loved one is feeling, you will be in a better position to help or support this person. It means a lot to a cp patient to have someone say something like “your pain is really bad right now, what can I do to help?”. By taking the time to learn the signals you are showing your friend or family member how much you care.

CP patients may not look as badly as we feel sometimes, but to dismiss us with such a statement as “But you don’t look sick” is unnecessarily cruel; especially since the signs that show how much we hurt are actually there. Just because our conditions are not as obvious as a cast, wound, crutches or wheelchair, does not mean that our pain is not there. Diabetes, cancer, Alzheimers, chronic pain and more are all conditions which do not always have obvious appearance related symptoms, but that in no way changes the fact that the person is suffering.

We have all heard “Don’t judge a book by its cover” at some point in our lives. It certainly applies to CP patients; do not assume that just because we do not overtly show our pain that we are not hurting. Having a friend or loved one dismiss our pain hurts more than the pain ever could. Sadly many people who respond with the “you don’t look sick” statement either have not paid attention to the signs, or just don’t care enough to see it. I find it sad that any person can so easily dismiss the suffering of another human being this way.

Tuesday, May 18, 2010

A Few Decent Days and WRITING YAY!!

The last few days have been pretty good. I recovered fairly well from the travel and did not have a pain crisis when we got home, which was nice. I've focused on trying not to do too much, while still doing a couple things a day. So laundry has been done daily, I cleaned the bedroom on Sunday, cooked a great dinner (new recipe) last night (which everyone liked) and today was a restful day.

I have 4 essays now that need their final re-writes before publishing. I was amazed to be hit with the *NEED* to write again so quickly and wrote two more. They all focus on some aspect of living with chronic pain and depression, which seems to be what my mind is wanting to focus on.

I added a blogoversary counter to both my blogs, but its counting is off. My stitching blog was started on Oct 17 2007 and got a 133 day countdown (yesterday). This blog was started Oct 19, 2009 and got the same 133 day countdown when it should be 135. I've left it for now because the code is correct (the date is embedded in the code) but for whatever reason it is counting wrong. Oh well, such goes life I suppose. LOL

Ron and I were talking the other night about how much of a difference this anti-depressant has made vs. how I responded on Zoloft. I re-read my stitching blog and there were quite a few entries talking about my depression and that they started me on Zoloft. There were a few happy posts about feeling better, but there were weeks or months between posts, and more posts about depression with 2009 being the worst. The difference is quite visible to me after looking back. Ron and I are once again cuddling more often (with me initiating it), talking and laughing together a lot more, just generally enjoying being with each other a lot more, the way we did the first few years I was here. I honestly did not realize that the Zoloft wasn't working as well as it should have. I try not to spend too much time playing "what if" about it and just enjoy the fact that I do feel ever so much better! I still have days where I'm a bit down or don't feel like doing much, but there are many more good days than bad ones now, which is just wonderful!

Well that is it for me. Talk to you all soon!

Wednesday, May 12, 2010

Home and Thoughtful

Well we made it home. Being with family was great, getting to see my daughter and her apartment was also great. Meeting her BF's parents was great. Having a wonderful meal with them was also great. But all the travel sucked!

First, the drive from where I live to Indiana where my in-laws live usually takes 13 to 14 hours. Thanks to severe pain and a line or tornadoes, we had to stop in Decatur Alabama the first night. I had spent the day before we left packing up my daughter's stuff to take to her, and my back and pelvis were not happy, so I was not surprised we had to stop. My pain level maxed out at the same time my FIL called the cell phone to warn us about severe thunderstorms, heavy rain, and tornadoes just north of us in TN. So we stopped. The next day was Sunday and we only made it about 2 hours. Just as we reached Nashville, between two sets of nasty storms, they closed all the highways that go through Nashville. ARGH! Now we had to find a hotel room. We managed to get one of the last 4 rooms at the second hotel we stopped at (the first was full and we had passed two that had no power so we didn't stop to see if they had rooms) and spent the rest of the day sitting in that room. DH and DS occasionally helping one of the employees sweep water away from the door to our room to try and minimize flooding. It must have worked because the carpet was only wet at the door and about 3 feet into the room. Day 3 we wake up to find out they have re-opened I-65 North, but many of the roads going there are still closed, yet we find a way and get going. On our way out of Nashville we got to see some of the areas that were severely flooded. It was pretty bad. So a normally long, yet not too bad, trip took us 3 days. I was in a lot of pain but it wasn't as bad as I feared, probably because of the longer stop in Nashville where I spent most of that stop sitting or lying in bed reading, thus resting.

Seeing the family was great. By Thursday I was feeling pretty much my normal self. Just in time to get back in the car for an additional 6 hour trip to Wisconsin to see my DD and her OH. My back was not happy with me for getting back in the car so soon, but I stuck it out. I managed to go to dinner and then the book store.

DD"s OH's parents are wonderful! I really liked them a lot! His mom and I talked all through dinner about all kinds of things. She is just so very sweet! Sam seems so very happy as well, which made me feel good. I was very glad that I pushed it a bit and went to dinner anyway. I look forward to spending time with them again in the future.

Friday morning we got back into the car for the 6 hour ride back to Indiana. That ride was too much and by the time we arrived I was in a full blown pain crisis. As soon as we got back to the house I had to limp straight to bed. I curled up on my side a pillow between my knees, left leg occasionally kicking or twitching, severe pain shooting through my lower back and buttocks and down both legs, the muscles in my left buttock and thigh doing the cha-cha with each other, (with the left being a bit worse than the right, as usual) and an ice pack stuck to the broken joint. I laid there crying for about an hour before I could make it stop.

On top of the pain were the usual roiling emotions that come with a pain crisis. I was scared, guilt-ridden, and terrified. Scared because I hurt so much. Guilt-ridden because I could hear everyone sitting at the table talking and sometimes laughing, but I couldn't participate. I was afraid people would be angry with me, specially if they knew I was crying. I was terrified because I knew that we were getting back in the car the next afternoon to head home again. I felt guilty that I could not sit with them and provide comfort to those I love during the days immediately following my DH's aunt's death on Wednesday morning. I tried hard not to give into those severely undermining thoughts that always hit during a pain crisis. The thoughts that I am weak because I can't just "grin and bear" the pain. That I make everyone's lives harder by being disabled and always in pain. And other thoughts in a similar vein. I felt so alone and angry at my own body for failing me yet again. I really hate it when my pain puts me in bed like that.

Saturday morning I woke up feeling a bit better. Still hurting more than usual, but no longer in crisis stage. DH and I took a nap that afternoon in preparation to drive home to Florida. We left about 6:30PM Indiana time. DH and I discussed how to help me through the trip and we decided to try something. We stopped at a liquor store and he bought a few of those tiny bottles of Crown Royal. Something I had not drunk before, but he assured me had a very mild taste. I can't handle strong alcoholic tasting drinks. With the bottles being small, they could be discarded right after using them so there'd be no "open container" in the car. Since I wasn't driving, DH couldn't get in trouble. So I drove for about 4 hours and then we switched. I drank some Sprite and Crown Royal, then laid my seat back and curled up on a pillow on my right side to take all the weight and pressure off the broken joint on the left side. I spent a lot of the ride that way. It worked. We had a flat tire when we were about 3 hours from home and it took a couple hours before we were back on the road. I slept for some of that time, waking up just as we were real close to home. I managed to keep myself out of a pain crisis, though I am still in higher pain than usual.

I figure it will take me a couple more days to return to normal. I certainly do not want to repeat that kind of travel again real soon!

I continue to read blogs written by other people with chronic illness or chronic pain. Many of them talk about accepting their restrictions and learning to do as much as they can despite them. They talk about having hope, learning from their experiences, and feeling an inner peace that was not always there before they got sick. I can relate to a certain point, but now I find myself wondering if I have fully accepted my own condition. I don't think I have accepted it since it worsened a few years ago when I re-fractured the joint by falling on a marble topped end-table. I find myself struggling with anger, resentment, and thinking alot of things I can't do anymore. Then my mind throws at me the things I do manage to accomplish despite the pain and I think, maybe I have accepted it and am doing better than I realized. It is very confusing. Right now, I find myself with whirling thoughts going back and forth on this issue. I wish I could say that I have that inner peace, hope, etc., but I don't feel it so I can't say if they are there or not.

Though, one good thing has occurred over the past week or so. I write, but writing became very difficult for me for a long time. It used to be that an idea would come to me and an essay, story, or poem would pop into my head, almost completely written and very insistently demanding that I find paper and write it down RIGHT NOW. I love that feeling! It has been a long time since it has hit me with the same strong intensity that it used to, and when it did hit it fizzled out quickly, usually before the item was completely written. Like the thoughts just vanished. Well, twice during our trip (once in Indiana, and once on ride to Wisconsin) that need to write hit and it hit me real hard! I wrote two essays with that same quick almost feverish intensity that I remembered so well. Ohman did that feel wonderful! One was inspired by a sentence I read in Stephen King's book The Stand about anger and resentment, and the other just showed up while we were traveling to Wisconsin. I look forward to cleaning them up and completing them soon. When they are done I will post them.

Well that was pretty much my week. I am home now and I have been taking it easy trying to get my pain back to its normal levels. Once I do, I should be able to play catch-up with the blog entries I have missed reading and stuff like that.

Thank you all so very much for your support and condolences. My DH also thanks you. He was very touched by everyone's thoughts and concern for him and the family.

See you all later!

Tuesday, May 4, 2010

In Indiana

We made it to Indiana. It was a rough trip thanks to the weather in TN. We ended up having to spend a night in AL and another in Nashville because as soon as we got half way through Nashville they closed all the major highways and lesser highways and we couldn't get through. So we spent the night. We arrived yesterday. DH's aunt is still hanging in. We went to visit this evening and it was so very sad. It reminded me a great deal of when my oldest brother passed away. He was comatose for over 2 weeks before he passed, with everyone sitting around him in the room. We had been told that she would not make it through the night, but she has. From everything I have heard she is a very strong person. I wish I had been able to get to know her.

I should be home on Sunday.