Good Monday Morning

white cup filled by coffee

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I wish I could say this day will be better than the last, or this week better than last week. I can only hope but time will tell. My pain level has been exceedingly high. There have been sleepless nights and the days are long and tedious. If it weren’t for my afternoon nap I’d probably look like one of The Walking Dead.

I’m behind on reading your blogs. I love reading about your lives, your passions, your pets, and I love the photos and poetry that come across my screen. I’ve made some good friends here in the blogosphere, and I’ve had to let some old friends go. Things change and we move on. It’s life.

I’m behind on my blog writing but I’m working on my stories and slowly writing my recipes for my cookbook. I have a lot of time on my hands although it seems I don’t have enough. I’m trying to push through this rough patch of mine, hoping this week will be better. I keep telling myself that it’s ok to just chill and take care of me, but it always seems that I’m neglecting my chores, my responsibilities and the people in my life. Then I think, if I don’t take care of me, who will?

self care isn t selfish signage

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So, I will do what I need to do to take care of me and to stay sane. I hope you all have a wonderful day and week!

Aunt Debbie

Scrambled Eggs For Brains

I despise this time of year for several reasons. The main reason, and most personal, is the lack of grandkids filling my home. I had so hoped for a full house of littles in my 50’s but I guess that’s just not meant to be. I have 4 grandkids now and the most I can hope for is a little time spent with the youngest.

Another reason for my loathing of the holidays is the fact that everything is so commercialized. It’s all about how many millions of dollars brick and mortar stores and online shops can pull in and about damn near every family in America feeling the need to go broke just to provide their families with gifts that they don’t need, don’t want or just don’t freakin’ deserve. I mean, how many teenagers have you known who deserved a brand-spankin’ new car for Christmas? I’m sure there are some out there, don’t get me wrong, but I’ve seen the worst, most spoiled brat teenagers get brand new cars and it makes me want to drop-kick their parents off a cliff.

I try to make my nieces and nephews crocheted items every year…which is getting rather difficult because there’s so damn many of them! My grandkids get crocheted afghans or toys, or whatever their parents think they need or might like. My kids get something useful because at their ages (30 and 33) they can buy their own expensive toys and be happy with a kitchen gadget or something of that nature. I bought Dad a motorized antenna because he insists that he doesn’t need DirecTV in his bedroom. The old-school antenna fell down months and months ago so he’s been without tv in his bedroom. He knew what I was getting him because I needed him to check it out first to make sure it was something he could use or would want. He did and so there ya go. Now he says he doesn’t know what to get me so I should pick something out for myself from him and surprise him. Always a joker. Now I have to decide what I want.

I’m really exhausted…mentally and physically. My brain is just scrambled most of the time. I can’t focus. As I type this, I have to keep checking my spelling because inevitably I turn the letters around or leave letters out. That’s not normal for me. I thought maybe it was just from doing Thanksgiving dinner, which we had the Sunday following Thanksgiving because I needed time to prepare after being sick for 12 days. I tried to make it as easy on myself as possible. I made absolutely nothing homemade. It should have been easy, right? After all, dinner was just four people and everything was boxed, canned, instant, frozen, and/or just needed simple assembly. The turkey breast soaked in a brine for 2 days and on Sunday morning I tossed it in the roaster. I was in so much pain afterward…and I’m still paying for it. I thought I would feel much better by now.

Our traditional fixings for our Christmas Eve (homemade pizza, pizza balls, and popcorn cake) will have to be made by my son or he just won’t get them this year. I just can’t do it anymore. Last year, he came over to help me make them and all was going well until I fell like a dumbass. I had huge bruises on my thigh and didn’t walk right for a week.

I’m not even going to put up my little tree like I did last year. I just don’t have it in me. I have no motivation, no inspiration, no desire. That’s what chronic illness does. It takes away a person’s desire to do the things he/she used to love to do. It’s exhausting

I still have packages to ship, a few gifts to wrap, and Christmas dinner to plan. I think I’m just going to buy a ham and some baked beans and be done with it. Nothing special…but gotta have my ham! If my brain isn’t already scrambled enough, going to Walmart will surely drive me to the brink of insanity!

Emotions

I have been trying to write all week. I just can’t seem to focus. I’m feeling overwhelmed with grief, sadness, depression, worry, gratefulness, and so many other emotions lately. It’s hard to concentrate when so many things are going through your mind, constantly.

Depression is probably my biggest enemy this week. Since my pain level has been so high, I’ve had a hard time getting around. It seems that it won’t be long and I won’t be able to walk at all. Then what happens? I try not to think about it. It doesn’t seem to matter to the doctors I’ve seen. They just don’t seem to understand the gravity of my situation. They see my situation on paper, Xrays, MRI’s, etc., but they don’t see ME.

I am still grieving the life I once had. The life that I should have had after my kids were grown has changed into a life of chronic pain, depression, and mobility issues. Not too long ago, I started seeing a light at the end of the tunnel. I thought I was finally going to get some help. That idea was shattered like always.

I do have things in my life to be happy about and wonderful things to be grateful for. It’s hard to see those things sometimes because when you’re in constant pain, it over-rides everything. Your world seems to be THE PAIN. Everything you do revolves around THE PAIN. Getting groceries, going out with friends, hanging out with family, spending time with the grandkids….all revolve around the pain level of the day.

I’m very grateful to my friends and family who are praying for me. My circle is small but at least I know who my real friends are. Some of those friends are people I have never met but I trust them more than most people. They are not just friends; they are family and very close to my heart.

Only my friends and family who have chronic illnesses truly understand how difficult life can be. They understand how sadness can overcome you. They understand how much you want to do something and they know why you can’t. Those who do not suffer from a chronic illness have no idea how hard it is to stay positive — but yet they tell me to “Stay positive” all the time. Maybe it’s because they don’t know what else to say, but I wish they wouldn’t say anything at all. I know they mean well, so I don’t hold it against them.

All I can do at the moment is hope that next week is better.

Suffering With Chronic Pain

Most people don’t understand chronic pain and how it affects a person’s life. They will never understand until it happens to them. I don’t wish that on anyone! Most chronic pain sufferers have at least one well-meaning friend who is always trying to find a cure for their ailment or pain. The effort is much appreciated but it’s all in vain. Most of us with chronic pain have tried just about everything…because…do you think we WANT to live with debilitating pain? Of course we don’t! We have tried almost everything we can to make our lives more bearable, to no avail.

I have Osteoarthritis and Degenerative Bone Disease, specifically in my knees. I am in Stage 4, which results in the loss of cartilage in the joint. There is NO CURE, only treatments to manage the symptoms. The bone-on-bone friction associated with this can cause severe symptoms, such as:

  1. Swelling/Inflammation – Synovial fluid can increase, which normally helps reduce friction with movement but large amounts can cause swelling in the joint. Fragments of broken cartilage can cause increased swelling and pain.
  2. Severe Pain – Pain during movement, and during rest and sleep. By the end of the day, after use of the joints, more swelling occurs and pain is increased.
  3. Decreased Range of Motion – Movements are slow, with stiffness and pain making it hard to enjoy daily activities.
  4. Joint Instability – The joints become less stable; knees can “lock up” or just plain give out, which can result in a fall or injury.
  5. Weakened Muscles – As joints continue to wear down the muscles become weaker, bone spurs can develop and bone deformity can occur. (My legs are bowed, more so the left.) With weakened muscles also comes an increased risk of falls.

Some of the words I have used to describe my pain are sharp, gnawing, throbbing, stabbing, burning, excruciating, grinding, locking, stiffness, dull, tightening, and debilitating. Sounds fun, ‘eh?

This disease causes severe pain but also affects your life in other ways:

  1. Sleep Disturbances – Interferes with restorative sleep. It’s difficult to find a comfortable position, and it’s painful to even move.
  2. Weight Gain – With chronic pain, you tend to move less so it’s easier to put on extra weight. Pain makes it difficult to exercise or just have an active life.
  3. Anxiety and Depression – With chronic pain you tend to have difficulties performing normal everyday tasks like cleaning and laundry, showering, dressing, grocery shopping, walking, reaching, cooking, stairs, standing in lines, and much more. These are things we take for granted when we’re physically able; we don’t even think twice when doing them. When those simple little tasks become a struggle, it has a negative effect on our mental health. Enter depression and anxiety. It’s all so exhausting!

So, I guess I’m just trying to help others understand the struggle of living with a debilitating disease and chronic pain. Everyone’s struggle might be different but we are all the same. We are suffering, even if we don’t show it on the outside. We try to hide it from others. We try to be “normal” like everyone else. Some days we try. Sometimes we succeed. Sometimes we fail.

Some days, we just CAN’T. 

Hopeful…. But Not Too Hopeful

I’ve been sitting here at the computer tonight, not really into anything in particular. My mind is elsewhere. I’ve got an appointment tomorrow with my ortho doc.

6 months ago, I tried the Synvisc-One injection in my knees. I had such high hopes. When I left the office, I was walking faster than I had in years and I had less pain. The shots seemed to have helped! I went home, under orders to not overdo it, so I took a nap. When I woke up the effects of the injections was gone. Despair set in. I couldn’t try the other injection for 6 more months!

I’m not really anxious about my appointment. I didn’t experience any severe pain with the last round of shots so I’m not worried about pain. I guess I’m just trying to keep myself from becoming too hopeful. High hopes have always caused disappointment in the past. I still have to hope this round of injections will ease my pain, but I’m not counting on it. I never count on anything to actually pan out in terms of help for my pain issues….story of my life.

I’ll hit the sack tonight with hope for a good result tomorrow but I’m not going to let it keep me awake thinking about it. I guess that’s part of the reason I’m writing about it. Getting it off my chest before bed.

Fingers crossed. That’s the best I can do.