10 Things On My Mind Today, Sunday

Just a few things on my mind tonight. It’s been a rough week.

1. My state of mind. I hope this improves over the next week because I can’t stand it when I’m depressed and feeling sorry for myself. I have felt so damn alone this past week. It really bites when you have chronic pain and mobility issues and you feel like a burden to everyone. I don’t like asking for help but sometimes when I do, I feel like I have just demanded someone’s first born child or stolen their soul for all of eternity.

2. My dad’s leg. He has cellulitis. I had been after him for weeks, if not months, to go to the doctor and have the rash on his leg looked at. His reply? “I have a doctor’s appointment in December!” When I took him to his Lifeline screening on Thursday, he was informed that the skin on his leg felt hot to the touch and that he should go to the doctor because it could be infected. Then, and ONLY then, did he allow me to take him to urgent care and have it checked out. Good grief. Stubborn man.

3. Hurricane Harvey. Oh, the damage you have done. Thanks to all of the rescue workers, paid and volunteer, who have helped save so many lives. Praying for Texas tonight.

4. My neighbor. She has spent the last couple of years caring for her mother who was suffering from Alzheimer’s Disease. She lost her mom this week. She was a nice lady and had an awesome sense of humor. Alzheimer’s is a terrible disease. It rips families into pieces…their hearts, that is. Prayers to the family.

5. The stray cat that I have been caring for, for the last month and a half. She needs much more care than I can give her due to my pain and mobility issues. She is long haired and I am still fighting the matted fur she arrived with. I am trying to find her a good loving home. She’s sweet, well-mannered, and has been spayed and received distemper shot. I hope I can find someone who will love her with their whole heart.

6. Still working on my weight loss but it’s not easy trying to get back on track. I’ll never get my knee surgery if I don’t snap out of this slump!

7. Chocolate. Always craving chocolate. Gimme some.

8. I hope I get some sleep tonight. Sick and tired of tossing and turning….if you can call it that. I can barely move; repositioning is terribly painful.

9. What’s for lunch tomorrow? Dinner? Planning my meals for the week. Ugh.

10. What can I watch on Netflix? Need stuff to watch because I can’t go to bed early…because I can’t sleep. Ugh.

From The Outside, Looking In

Recently, I had a very rough day. It was one of those days where nothing worked correctly or as easily as it should have. There were many people involved that day as well. People who should NOT have a driver’s license, or people who needed better training for the job they held. I was aggravated but I was happy and relieved when I arrived home; safe a snug in my own little world.

Someone asked me, “Are you getting old and cranky?” My answer was, “No, just sick to death of imbeciles.” Well, maybe I am getting old and cranky. Maybe I’m not. From the outside looking in, it may appear that I am ‘old and cranky.’ It may appear that I am hateful or judgmental. It may appear that I am ungrateful or self-absorbed. It may appear to be many things, from the outside looking in.

The truth of the matter is, I have chronic pain. That doesn’t mean I have a little pain sometimes. It means that I have severe pain every single day; every hour of every day, with no relief. It’s 24/7. Even during the few hours of sleep I get each night, I am NOT free of pain. When I sleep however, I am free of the depression that comes with pain. I am free of the thoughts of the things I can’t do anymore or the things I have trouble doing. I am free of the constant struggle of trying to live my life like other people. I am free of the guilt of not being able to go to my grand children’s ball games and school events. I am free of the guilt of not being able to drive to see my sisters and their families. When I wake up however, it’s a different story.

Chronic pain changes a person. I use to be the person who could see the bright side of things. I laughed at things that others didn’t even think were funny. I had been accused of being “immature” so many times! But I digress. Chronic pain takes over a person’s life. That’s all you can think about. Everything you do is planned around your pain. You can’t keep up with friends and family so relationships are either lost or have drifted far away. When you can’t clean the house properly or cook full meals like you use to, it messes with your mind. When everything is a struggle: getting something out of the cabinet, putting dishes away, making a sandwich, feeding your furbabies, taking a shower, getting dressed….everything! Even little things like rolling over in bed, bending over to pick something up off the floor, getting out of a chair, putting on shoes and socks, become very painful and difficult. Those things an able-bodied person doesn’t even think about, are things that I struggle with.

So, when you only have a few ‘good’ hours each day to live your life, it tends to change your sense of self and when you go out to run a few errands, you pretty much want to be able to get done quickly, because the pain is screaming at you to get done/sit down/take a nap/rest your legs!!! When you have to deal with incompetence and stupidity when you are in pain, it tends to make you freakin’ crabby!

Now I didn’t write this to make anyone feel badly. I just want people to understand that I did not choose this life with pain. From the outside, you may think one thing but it’s seriously something else….

 

 

 

Mistrust, Disgust & Humiliation, Part Two

Well, my appointment with the orthopedic specialist came and I’m glad it’s over! What started out as a consultation about my knees, turned into a fat-shaming session — in less than 5 minutes!

First, he asked me what he could do for me and I told him that my doctor had been telling me for years that I’m too young for knee replacement surgery but that I’m in severe pain and having mobility issues. I told him I need help.

He said, “Well, Debbie. You’re not too young for knee replacement surgery.” I felt good for a split second that I was finally going to get some help. Ha. Short lived. He added, “However, you’re not a good candidate for knee replacement because you’re too heavy.” See, less than 5 minutes.

If I’m such a risk why did I just have surgery last year? 

He continued to tell me how I needed to count calories and eat smaller portions. I sat there in total disbelief because this man has the balls to think he knows me?? I tried to explain to him that I have been struggling with my weight since my first child was born and I’ve not had much success in losing weight. He interrupted me to tell me I needed to eat less calories. I said, “If it were that simple I wouldn’t be fat right now, now would I?” He said, “Let me tell you a story and see if it makes sense to you, Debbie.” He proceeded to tell me about his sister, who was overweight and was suffering from knee pain. She was a widow and she ate out all the time. She didn’t cook for just herself. He said one day he went to visit her and she had lost a lot of weight. He asked her how she did it and she told him that she would get her food at restaurants, eat half and save the rest for lunch the next day. Of course it makes sense but….

I tried to tell him that I’ve been trying to get help losing weight multiple times because I just can’t seem to lose. I told him I think there’s something else going on. “Eat less calories,” he said. Seeing red! I told him that I can’t even exercise like I need to! “You don’t need to exercise to lose weight, Debbie!” I was getting angrier by the minute. I mean, sure you can lose weight without exercising but if you have too much extra weight and you don’t exercise you’re going to end up with loose skin hanging all over your body! Exercise and diet go hand in hand. Both are important – says every fitness and nutrition expert in the world! They can’t all be wrong!! Besides, it wasn’t just exercise that I couldn’t do. I was having trouble with daily activities! My knees are severely damaged! You just don’t realize how important your knees are until you can’t even pivot, or get up out of a chair!

I tried to tell this man, who has the bedside manner of Donald Trump, that I don’t eat the way he thinks I eat! He says, “I don’t think anything about you, Debbie.” I said, “Obviously you have this preconceived notion that I eat more than I should and that I eat a lot of calories!” He interrupted me, yet again. “Eat less calories, Debbie. Calories are the key.” I interrupted him this time and said, “Let me tell you what I eat!” I tried to explain to him that I drink lots of water, watch my sugar consumption, watch my portion sizes. I don’t eat fast food. I don’t eat a lot of processed crap. I don’t drink soda. I don’t eat dessert. I eat healthy foods and lots of veggies, especially salads, a lot of them. One day a week I go out and eat.” He still insists that I need to eat less calories. How many calories does a freakin’ vegetable salad have? GEEZ! 

I could feel that I was about to shut down. Nearly in tears I said, “Based on what you have told me here today, if my doctor would have sent me to see a specialist 6 years and 50 pounds ago, then I would have had the surgery and be on my feet walking again like I use to.” I said, “I use to be a cross-country backpacker and now I can’t even take a short walk to the mailbox!” He said, “Well, things are different now.”

I shut down before I could tell him that I ate veggie salads, grilled chicken, tuna and soups for the better part of 3 years – between gall bladder issues and my hiatal hernia repair surgery last year – because I couldn’t eat anything else without feeling bloated or having a phantom gallbladder attack. Do you want to know how much weight I lost doing that for nearly 3 years? 15 whole freakin’ pounds. 15!! Tell me there’s not something else going on…..

I stood my ground with this doctor for a lot longer than I thought possible. My therapist advised me beforehand not to shut down. I have a tendency to do that when I feel I am not being heard. What’s the point if you’re not being heard, right? Anyway, I found myself raising my voice numerous times, talking over this so-called doctor because he kept interrupting me. I could not believe how rude and insensitive he was. I had had enough.

When he got up to leave the room, he stuck his hand out to shake my hand. Not going there, doc. I told him to just get out so I could get dressed and leave.

Afterward, which was nearly 3pm, Dad and I went out to eat. We hadn’t eaten ALL DAY but I felt so ashamed and guilty for even thinking about eating! How dare someone make another human being feel that way! I used the restroom when we got to the restaurant and I felt like I was going to throw up. This man made me feel ashamed of myself, ashamed of what I look like, ashamed of who I am. He doesn’t know me, my struggles, or anything about me.

Doctors seem to only see black and white, or what they know and what they think they know. The only doctor I have ever had that actually helped me with my weight problem was the first one who actually looked a little deeper into what might be going on. He checked my thyroid, found it extremely low, put me on meds and I lost 35 pounds fairly quickly but then I hit a plateau and I moved away and now I’m stuck with donkey doctors.

I’m done with them all. I decided in a last ditch effort, I will try NutriSystem. I’ve tried just about every other diet on the planet except for the ones you have to pay for. Couldn’t afford it, still can’t, but I have to try. I start tomorrow.

 

A Helping of Thanks with Sarcasm on the Side

I would like to thank the medical profession for not helping me in the last 10 years. I don’t know how I could possibly live my life without pain.

A special thanks to my doctor, who has been telling me for years that I am too young for knee replacement surgery. This allowed the bone damage to worsen and the pain to increase, rendering me unable to work and to become more sedentary every year. I love the ‘fat me’ that I have become due to decreased activity.

I can’t forget to thank the referral doctor for the humiliation, which is good for the soul I’ve heard. Thanks for pointing out that I am fat. I would have never known that without your ‘help.’ I really appreciate the ‘fat shaming’ because without it I would have felt good about myself that day. Oh, and please pass more thanks on to my doctor because NOW I know that 50 lbs. ago I could have had knee replacement surgery regardless of my age. I really am happy that I’ve suffered all these years so you both could make sure your bedside manners, understanding, and compassion were top notch.

Special thanks to my best friend, fondly named Michael Cane, who has been faithfully by my side for the last 4 years. Without Michael, I would have fallen more than the 4 times I did. The embarrassment of those 4 times was more than enough times to make me feel hopeless.

Of course, I can’t forget Peter Pottywho has been my constant companion during the night. It’s nice when I don’t have to walk to the bathroom at 1am, 3am, and 5am when I have to pee.

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In all seriousness, I am thankful to wake up every morning, albeit with pain. I am thankful for a lot of things but it sure as hell isn’t the medical care I have received in the past 10 years!!! It’s no wonder people don’t go to the doctor. It’s no wonder they don’t trust doctors! I’m in that very same line now.

Some Will Never Understand….

Something has been on my mind lately. (Well, something is always on my mind! I can’t help that.) I’ve been mulling this certain thing around in my head for nearly a week now. I have to write about it to get it out of my brain!!

A friend of mine, read something I had posted on Facebook about chronic pain issues. She messaged me about it. She said she had read several things I had posted about chronic pain and chronic illnesses, and even some personal things about my own situation. She said she couldn’t help but notice how focused I was on my pain. Immediately, I felt defensive.

HER: Why are you always focused on your pain?

ME: Because my pain is a huge part of my life. Everything I do or don’t do is based on my pain level.

HER: If you just forget about it you’d be happier.

ME: How do you know I’m not happy?

HER: Because you always seem to complaining about your pain.

ME: You ain’t even heard complaining yet!! I save that for my therapist.

HER: You see a therapist and you still focus on your pain?

ME: Yes, I see a therapist. She has been very helpful in teaching me how to deal with my pain and other issues.

HER: What other issues?

ME: That’s none of your business.

HER: Ok. I still think if you’d just stop focusing on your pain, you could live a better life.

ME: You have no idea, and you never will until you are faced with a chronic illness, how hard it is to even get out of bed on some days. You will never understand that just taking a shower sometimes takes all the energy you have for that day. You don’t realize how much time it takes to do any given task because of your pain. You have no clue how depressing it is to not be able to just go and do the things you have always enjoyed, such as hiking, site-seeing, playing at the park or going to the zoo with the kids/grand kids, making bath products, fishing, shopping for hours on end at the Mall, planting a garden every Spring, rearranging the furniture, volunteering, washing the car, holiday celebrations, birthdays, cooking, going to the movies…. You don’t have a clue! When you have a chronic illness, your entire life changes! Everything is different. You approach things differently. You do everything differently. I hope to God, you never have to know what it’s like to have chronic pain!

HER: Isn’t it just arthritis?

ME: (Seriously wanting to punch her in the face!) It’s not JUST arthritis! It’s arthritis in my entire lower body, from my hips all the way down to the joints in my toes. It’s a degenerative disk in my spine and arthritis working it’s way up. It’s arthritis in my fingers, that gets bad when it’s extremely cold and even worse if I don’t crochet every day. It’s arthritis, that has resulted in knee bone damage with severe pain! I walk with a cane because sometimes I am very unsteady on my feet. I can’t sit, stand, or walk for more than 20-30 minutes at a time. I am in pain 24/7. I get NO relief! I don’t even sleep well due to the pain!!

I hit send on the messenger….but I wasn’t done. I had to stop this conversation.

ME: Don’t say anything. You are seriously coming close to ending this friendship. I’m done with this conversation.

That was the end of it…. I haven’t heard squat from her since. That’s ok because I don’t need the drama. I have enough to deal with. 

Honestly, if you don’t have a chronic illness, then you will never understand completely. You can try. You can also try to be more understanding of those who DO have a chronic illness. They really could use your support.

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