Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

Pneumonia...a good thing?

I signed up for some stitching related things, so of course I got sick. Seems to be how my luck runs. LOL

3 weeks ago I was diagnosed with pneumonia so I've been pretty sick. Lots of coughing, wheezing, and congestion. But I have noticed something about being sick, when I am sick I don't feel the pain in my back as much (this is a good thing). I think it's because I feel so horrible all over that it just kind of blends in or is overshadowed if I feel extremely horrible. So I guess being sick does have it's good side!

Though body aches on someone who suffers from chronic pain seems monstrously unfair. It's like "Ohhhh give her body aches, she doesn't have enough pain!". LOL I try to find amusement in things, it keeps me from going too crazy.

I'm not feeling as depressed as I was, which is nice. I'm hoping this improvement isn't just because I'm sick. I don't think it is because I am finally starting to feel better and the overwhelming sadness isn't returning.

Other than being sick, nothing else is going on. I am feeling a bit better today so I am going to try and stitch a Christmas Ornament for the challenge I joined. I was hoping to have at least 2 ornaments stitched by now, but no such luck. I'm going to try a simple design because my concentration isn't as good as it normally is and I'm afraid if I try something more difficult I'll just end up having to rip it all out.

Just wanted to let everyone know that I'm still around. I hope everyone is doing well!

Depression Messes With Everything!

Depression hurts those who suffer with it in so many different ways. First there are the emotions involved, feeling sad all the time, feeling down, anxious, overwhelmed and so many more. The loss of energy is also a major pain in the neck. Even if you manage to drum up the desire to do something, you are just to dang tired to do it. Body aches and pains are a nasty effect for anyone but especially so for someone who already lives with pain everyday. I am not trying to say that the aches and pains a non-chronic pain patient who is depressed feels are somehow less annoying or anything like that. I just mean that for a depressed chronic pain patient, the aches and pains from depression increases their overall pain level which makes it very difficult to manage the extra pain. Complete loss of sex drive also stinks. This can result in your partner wondering if you have lost interest in them, or no longer find them physically attractive or other negative thoughts. The complete loss of caring about anything is also a horrible effect of depression.

As I tend to be the kind of person who genuinely cares about other people, their situations and more. Losing that made me feel even worse. I am very happy with my compassion and empathy for others. It is, to me anyway, a good way to be.

These, and a few others, are all symptoms of depression that I have dealt with before and which feel "normal" to me, at least normal for when I am depressed. But recently I realized I have another symptom that really bothered me. Though I'm not sure if it is a symptom or just a side effect as logically it could be a step or two further down the "nothing matters at all" path that I wandered through with this bout of depression. Anyway I found myself once again able to enjoy my cross stitching hobby. Picking a chart, getting together the floss colors for it, picking out a fabric and getting a piece big enough for the design plus a bit extra for framing/finishing, then the actual process of stitching the design and watching it come to life on the fabric, each stitch bringing forth more and more of the design on my fabric; the whole process is just a great deal of fun and very satisfying to me! I may not have a job, but I know I am not useless or worthless because I can create beautiful stitched pieces of art! (leave my delusion alone please ROFL)

I have started a few different projects and picked up an old one. There is the Quaker piece, Frogging Around, the Delft Card (which is now finished!), Christmas Dreams and the Anniversary Sampler for Ron (DH) and I. As I got close to finishing the Delft Card I got scared! I kept picking it up, putting in a stitch or tow, then getting terrified and putting it away. Eventually I stopped even trying. This of course made me feel silly, sad, angry and more. I didn't talk to anyone about it because I was afraid they wouldn't understand, or think I was making it up to get attention, or think I was over-reacting and there really wasn't anything wrong.

But feeling my heart race, sweat break out on my skin, my hands shake and my breathing speeding up were all quite real symptoms and the emotion was also quite real; I was afraid to finish. I think the fear may have been two-fold in nature. The whole fear of failure/success so just don't try thing, I know I felt afraid of finding out that I couldn't finish it. Then there was fear of screwing it up real bad and having to start over. With all those doubts rolling around in my head and the fear knotting my stomach, it just became easier to put the design away rather than continue to try and stitch.

Last night I finally told my DH about how I have been failing, asking him to help me push past this. I also told my friend Angi, who is also a stitcher. I sat down, determined to finish the Delft Card I started at beginning of month to send to someone in the UK so they could sell it and raise money for cancer research. Angi and I sent text messages back and forth and both of them kept reassuring me that I could do it. I did ask both of them at least once if I could stop. The last time I asked I was 47 stitches from done. They both told me no and Angi's DH (Dan) piped in with a no as well. Thanks to their support I did finish the card. At first I felt mostly relief that it was done. Then came disbelief, I kept staring at it thinking "It's done?? How did that happen? Is it really done?" and checking for any missed stitches. I just couldn't believe I had done it! Then after a few minutes the wonderful rush of joy filled me and I got to experience the wonderful rush that accompanies finishing a piece and it FELT GREAT!

When I got on my blog to post the "done" I found 4 comments awaiting approval. They were all very supportive, understanding, and encouraging. No one laughed at me either. It made me feel so much better!

Still this was a rather odd experience as it is not something I have had happen before, I have had something similar but the reason for it was very different as it was the result of an abusive relationship and it affected my ability to write. Heck I couldn't even write in my journal, though I have finally gotten over that and am writing again. So here is hoping that this is gone also! I did some more stitching on Frogging Around and should have it complete tomorrow I hope!

Being able to write all of this stuff down (so to speak) on this blog has been so very helpful to me since I started it. The comments I receive make my day and better still I have met other people in similar situations as myself. This has been very helpful to me! Just knowing that I am not alone helps a great deal!

The right person appears at the right time

I went to the doctor today for my pain management appointment. I was assigned to a new physician's assistant (PA) named Denise. After finding out yesterday when the office called to remind me of my appointment that I would be seeing someone new (this has happened for my last 3 appointments) I was worried. But since I knew it was a woman I was also hopeful that she would be as good as my old PA (also named Denise). In my experiences I have much better luck with female doctors or PA's than I do with male ones. Anyway she is a really nice lady, who actually listens to her patients. She did a physical exam, which I was expecting since this is the first time we've met. She also told me that the reason I am scheduled for an appointment every 3 months instead of every month is because I am listed as not being at risk for addiction, diverting my medications, or anything like that. I already knew this about myself because I am very careful to follow all the rules and only take my medication as prescribed, but it was still nice to know that my doctor's office knows that I am not a risk as well. So it was a great visit just for the new PA, but something happened in the waiting room that made it a truly wonderful and touching visit.

I was stitching in the waiting room like I usually do. Usually the wait can be a couple hours so stitching keeps me occupied and helps keep me from getting annoyed that I have such a long wait time. This lovely older woman came over to me. Her name is Grace. She asked to see what I was stitching. I was working on the Delft Card for a friend in the UK to sell and raise money for cancer research. She said it looked wonderful then asked to see the back. I knew right then that she must be a stitcher because only a stitcher would know that the back of a piece is important. So I showed her the back and I was nervous! With her age I knew that she had most likely learned from her grandmother and mother, add in her accent and I knew she had learned from an older generation in a different country. The older generations, when teaching younger people to stitch, emphasized that they do it correctly, including making sure the back is as neat as possible. Knowing all this I was nervous to show her the back of my work, that it may not be up to her standards but she told me my back was perfect! She started complimenting me on how neat my stitches were, how neat the back was and complimented my grandmother and mother for teaching me. I had to tell her that they did not teach me, that I taught myself. She was surprised but said I obviously learned well.

She then told me how her mom and grandmother taught her to stitch when she was a little girl, back in Panama. She told me she used to stitch a lot and tried to teach her 3 daughters, but none of them were interested. She asked me to put some pieces in the County Fair in October and mentioned how sad she was that there was so little needlework being shown at the fair now a days. I told her about the ribbons I got in the Cochise County Fair back when I lived in Arizona. She said she wasn't surprised because my stitching is so neat.

She went on to tell me that she still had many patterns that belonged to her mother and how she kept them because they were her mother's. She talked about how much they meant to her and had tears in her eyes while talking. Then, she blew my mind! (i'm still very pleasantly surprised!)

She wants to give me those patterns! Can you believe it? Some of her most prized possessions and she wants to give them to me! I still can't believe it.

She said many of the patterns belonged to her mother and grandmother, but since she doesn't stitch anymore and her kids aren't interested, she has held on to it all hoping to find someone who would treasure them to give them to, someone who would use them as well. I almost cried! I will certainly treasure every single chart! I am so touched that she would give me the patterns that obviously mean so much to her, specially since we literally just met! I started to cry a little and couldn't thank her enough. I know how much those patterns mean to her because they were her mother's and her grandmother's. She said that she had watched me stitch for a few minutes before approaching me because she wanted to see if I was really enjoying the stitching or just doing it to get it over with. She said that I appeared to be a true stitcher, one who stitches for the joy of stitching. I told her how much I enjoy stitching, that it is very important to me because I can't work, so stitching gives me something to work for. I kind of see stitching as a job almost, I may not be able to work but I can make beautiful pieces of stitching for people. She understood. So we talked for a little while about stitching, her coming to the U.S., friends, family and lots of stuff. She gave me her phone number and took mine. She said she will call me in a couple of days, after she gets the patterns together. Her husband asked for directions to my house and we talked about being transplanted Yankees living in the south (He is from Maine and I am originally from Mass.) They were great people and I really enjoyed talking with them. I am hoping this is the start of a friendship.

I am hurting pretty good after the poking and prodding, but I wanted to share this story before taking a nap. :)

Rain rain go away...come again another day

We've had some thundershowers move through off and on today and as usual this increases my pain level. Both joints are swollen which really sucks. Of course this happens during my period, which raises my pain level anymore. But I keep noticing how different the pain is since my intense depression has gotten so much better. Even when I hurt a lot, I don't feel the need to curl up and hide, or lay in bed and cry. I seem better able to deal with the pain I do feel, and the pain seems lower even without the radio frequency. I expected some improvement, but not this much. I am amazed. I know I keep repeating myself but I just can't help it. Every day it hits me again, specially on days like today when my pain has hovered around a 7 and 8 all day, that I am dealing so much better with the pain.

I've continued doing chores around the house, which is nice. Tomorrow will be a fun day. It is my DS's 14th birthday. Where did 14 years go? Wasn't he just a tiny baby yesterday? He has turned into quite a handsome young man and I am so very proud of him. He wants to go to the roller skating rink for his birthday. So we will probably do that for him.

I did some stitching today, working on that card. It is now over half done. Well that is it for me so far :)

I hope your weekend is going well.

Laughter is the best medicine

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

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

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

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

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

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

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

Same Stuff Different Day

Today has been a fairly decent day despite the slightly higher pain level in my pelvis. My knee is feeling better and I managed to sleep for 6 hours last night. The swelling has gone down, as has the pain. It still hurts, but nowhere near as bad!

I had my doctor's visit today and saw the new physician's assistance that joined the practice. He seems like a very nice guy! He actually listened to me, which I really appreciated. That is a major pet peeve of mine, doctors who just don't listen to what their patients are telling them. In pain management the doctor has to rely on what their patient tells them because every person experiences pain differently. What is massive pain for one person, is not as bad for another. I get the diagnostic for radio frequency next Wednesday, so here's hoping I can get the RF itself done before June. I doubt it as my next appointment isn't until June and they didn't schedule a follow up for after the diagnostic. But I am hoping that when the diagnostic is over I can call the office to request they schedule the procedure or give me an earlier appointment so I can get scheduled.

The only bad thing with the P.A. was that he told me RF shouldn't need to be repeated at all. That it destroys the nerves and they do not grow back. So I did some more research to see if my information was outdated and found that he was wrong. The nerves do regenerate and can take anywhere from 9 months to two years. Some patients get relief that lasts for 2 years, but I am not one of them sadly. I only get between 6 to 8 months and it has been 8 months. So I printed out the article and intend to give it to the P.A. for his information.

While doing my research I also found out the name of the procedure for doing RF on the SI joints! It is slightly different than for the facet joints on the vertebrae, but it can be done! Woo Hooo! I plan on giving this information to my doctor and see if he can do the SI joint also. I can only imagine how much lower my pain will be if they can do the SI joints as well as the bad disks. It would be wonderful to have the lower pain level again!

Other than the doctor's office and some stitching while I was there, I haven't done much today. I read my email, read the blogs, posted here and in my stitching blog and that was it. It is hard to do a lot when your pelvis hurts.

Well I'm going to go sit in bed and stitch!

And the rain comes down..the pain goes up!

It's been raining off and on today, which causes my SI joint to swell and my pain to rise. YAY! not. I've caught up with blog reading and email reading and now I'm at a 7, even though I took my medication. I will be going back to bed after I post this.

My depression continues to be better, which gives me a lot of energy and desire to do things. Of course this happens during the few months that the radio frequency wore off and my pain levels are higher so I can't do stuff, not even what I usually do. This leaves me feeling rather frustrated because my mind wants to do stuff and my body can't. This is usually the worst time for me becuase it is when I am apt to push myself or do something that I know I shouldn't do just to make that need feel a bit better. So I am trying to keep myself occupied mentally so that (hopefully) I won't do something I shouldn't and hurt myself.

I had a nice long talk with my friend simi yesterday. I have missed talking with her over the last month. Sadly we were playing phone tag. It was wonderful to talk with her though, she means so much to me. She is having a rough time right now with her lower back and hip so I am worried about her. She has a wonderful doctor helping her though, so that's a good thing.

I talked with Sam today. She is hurting pretty bad because she has been pretty active so far with her boyfriend (playing the wii, going out and such) so she sounded a bit down today. But she was her usual chatty self even with the slight down tone in her voice. She seems to be having a decent time up there so far. She apparently called early today while I was asleep (slept from 10AM to 1:45PM) and ended up talking with her brother Kyle for a while. She surprised me by telling me she enjoyed their conversation and missed him. Apparently he misses her as well and told her that he wants to buy her a newer soul caliber game to replace the one he lost a few years ago. She was very touched by this and told him he didn't have to, but he said he really wanted to do it. That was very sweet of him!

I'm going to take my pain to bed and get some stitching done. I have to remember to take a picture for my stitching blog LOL

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!