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….

 

 

 

10 Years Coming….

It’s been months (and months and months) since I’ve updated my blog! The last time was just after being fat-shamed by a so-called specialist last year that my doctor finally sent me to. At that point I was pretty much done with doctors, especially the one I had been seeing since 2005. I had tried numerous times to find a new doctor….one was just as bad or worse than the one I was seeing so I just gave up. Tired of being knocked down time and time again.

Instead I focused on losing weight. I had tried for years to lose weight, never getting any help from my doctor, naturally. I tried every diet in existence, so it seemed….except for the diets you have to pay for. I couldn’t afford to to do that. I still can’t but I had to do something. I was at the heaviest I had ever been and it wasn’t getting any better. With doctors saying things like, “eat less calories,” and “you’re not getting enough exercise,” and “eat smaller portions,” and not even asking any questions about my diet or exercise, it became blatantly clear that I was not going to get anywhere with them! So, I signed up with Nutrisystem.

I started Nutrisystem on April 24, 2016. I lost 8 lbs. the first month. I am currently teetering between a 50 – 60 lb loss. I’m quite proud of myself! Nutrisystem does work but you have to stick to it. I followed the plan exactly as they instructed and by Thanksgiving I felt that I could relax a little. After the holidays I got back to it and I will continue to stay on it until I am at a weight that I’m happy with. I digress here, this post is not about my weight loss….but it WAS the start of a new, more confident me.

After the holidays were over, I realized that as much as I despise doctors, I still need one. I realized that it must be a new doctor because my current doctor was not acceptable. Tired of her constantly sweeping my concerns under the rug and giving me stupid answers. For 6 years I heard, “You’re too young for knee replacement surgery.” She never once sent me to a specialist to make that assessment. Last March, when she finally did send me to a specialist, the specialist said, “You’re not too young for knee replacement surgery. You’re just too fat.” So, if my doctor would have sent me to him 6 years and 60 lbs ago, then maybe I would have had some kind of treatment or the surgery and regained my life by now! Thanks a lot, Doc.

So, in Jan. 2017. I started researching doctors in neighboring counties/towns. Of course, I had done this before a few times and ended up not making any progress towards finding a new doctor. This time was different. It had to be different! I made an appointment with a local doctor. I was prepared to get knocked down yet again, because that’s what always happens. This time was different. This new doctor spent an entire hour with me! She sent me for xrays and she lined up an appointment with a specialist in March. She told me that she didn’t think my current weight would be an issue with knee replacement surgery. I was so relieved to have found this woman! She was kind and sympathetic, informative and thorough. This was the first time in 10 years I had felt hopeful. 10 freakin’ years I had been trying to get help. In the very beginning it wasn’t even pain, but I knew something was wrong. Year after year, no special blood tests, no imaging, no help, no information. Now I finally had some hope!

When I saw the specialist, she was also very nice, sympathetic, informative and thorough. Instead of telling me I was too young for knee replacement surgery, she explained to me WHY age was a factor. Instead of telling me I was too fat, she explained to me WHY weight/BMI is an important factor. She even offered a referral to a weight loss specialist. Instead of telling me to do squats to strengthen my leg muscles, she sent her in-office Physical Therapist in to talk to me and he gave me specific exercises to do at home. (My insurance won’t pay for pre-surgery PT.)

This doctor, asked me many questions about what I have tried and offered injections (other than the normal cortisone shots that didn’t help me at all) and told me it was entirely my decision as to which injections I wanted to try and she gave me informational pamphlets to help me decide. In April, I went back to her with a decision. I decided on Synvisc-One injections. This injection was suppose to create cushion in my knees where I was bone on bone. I was very nervous. I’m already in tremendous pain so I was apprehensive about the pain of a needle being jabbed into my knees! It really turned out to be ok. It wasn’t that bad. Afterward, I was walking with little pain and faster than I had in years! Of course, it didn’t last long. A few short hours later it was right back to the way it was before. My knees are just too far gone.

In an effort to help with pain management, my primary doctor prescribed a medication that helps nerve pain and nerve pain caused from inflammation. It can cause depression so I have to be careful. It has helped with some of the odd pains I was having…..and therefore helping me sleep at night. Not perfect sleep, but better sleep. I’ll take it.

So, it’s June now and I am still working on my weight and building the muscles in my legs to support my knees. I can’t get the injections again for 6 months, but they won’t help anyway. I just have to keep trying different things to manage my pain.

Slowly but surely, I am moving forward. I had been stuck for 10 years trying to get help with no success. I was sinking deeper and deeper into depression and hopelessness. I am finally getting help and guidance, information and treatment!

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.

 

Mistrust, Disgust & Humiliation, Part One

If you know me, then you know of my struggles, or some of my struggles at least. My last post was a direct reflection of the disgust and mistrust I have for the medical profession in trying to deal with those struggles. This post, an explanation of what I have been dealing with in the last umpteen months!!

My doctor had been telling me for years that I am too young for knee replacement surgery. Even though I have bone on bone damage. Even though she knows I have bone on bone damage. My pain level has increased significantly over this past 6 years, as you can imagine. It’s not like I can stay off my feet to avoid doing any more damage to my already damaged knees. I have a life to live, chores to do, obligations, as anyone does. I have things I want and need to do just like anyone else.

So, I’ve been religiously taking my pain meds so that I can do what I want and need to do. Damage to my knees progressed, pain level increased and so my activity level has decreased. The pain is sometimes unbearable. I am unable to exercise the way I need to exercise to lose weight or even maintain a steady weight. I have struggled with my weight for many years; since my thyroid went wacky back when my first child was born. It took 5 years after that to even get a diagnosis – after I was already 100 lbs over weight!

I’ve tried many diets – low calorie, low fat, low carb, high protein, cabbage soup diet, mediterranean diet, and more – over the years. I have lost a few pounds here and there but nothing of enough significance to keep stressing myself over a diet. Not enough weight lost on any one diet to warrant continuing to deprive myself of everything that tastes good! But I digress. I do that often. More in another post later about dieting.

In February, I was in to see my doc for my routine annual exam. I had asked her about trying a new pain medication because my pain was getting worse. She wouldn’t give me anything else. She said there’s nothing else I can take. WHAT? Give me a break! There are plenty of medications for OA pain relief out there! I think she thought I wanted narcotics. Nope. I just want quality of life.

So, now things get really intense and I get to where all I see is RED. She asked me if I had considered knee replacement surgery. I lost it! I raised my voice and reminded her that she’s the one who’s been telling me for years that I’m too young for knee replacement surgery! She said, “Yes, but there are other treatments and they will do knee replacement depending on severity……” Yadda, yadda, yadda. I don’t remember anything else she said because I was so angry and in total disbelief! I told her I had considered a pain clinic nearby that specializes in knee treatments so people can avoid surgery. She said she had heard many people having good results there.

I had every intention of checking out that pain clinic personally, but I ended up back in the doc’s office with a UTI just a couple weeks later. I asked her then for a referral to see about knee replacement surgery. She said, “You’re too young for knee replacement surgery.” Red! I said, “I wish you’d make up your damn mind! Just 2 weeks ago you asked me if I had considered it!!” I wanted to kick her in the face! I was in the perfect position to do so, up on that exam table!! It would have hurt like hell with my knees as bad as they are, but I would have received great satisfaction in doing so. She tells me that there’s a process; first I will have to have x rays and discuss options with a specialist. She must think I’m stupid. I know I’m not going to make an appointment with a specialist and then be scheduled for surgery that very same day! I know there’s a process. So, I said, “I realize that, I’m not stupid. If you would just set me up with the specialist I will take it from there.” She did. Appointment made. This was just the beginning of another experience I won’t soon forget.

To be continued…….

Want Respect? Show Some….

I am not a political person. I am not a religious person. I have my opinions and I have my beliefs. Just as you have your own beliefs and opinions. If you want me to respect YOUR opinions, then you must also respect mine. Keep it to yourself if you can’t be respectful. Simple as that.

When I say I am not a religious person, that doesn’t mean I’m not spiritual. I have certain beliefs and I choose to keep my beliefs to myself. Why? Because my beliefs are my personal choice. That makes them personal and I keep personal things to myself. I wish everyone else would too. I believe everyone has the right to his or her own beliefs but that doesn’t mean that they need to share. They don’t have to take every opportunity available to tell people all about it and push their beliefs on others.

(That’s the biggest problem with social media. Everyone feels the need to tell everyone how they feel or what they believe….. That’s a blog post for another day!)