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…….

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.


The Joy of a Little Walk

I’m feeling better than I have in months! My doc gave me a new anti-inflammatory, plus a rescue drug for those days when I have severe pain, and just after one dose of the anti-inflammatory I could feel the difference! I am on Day 4 now and I am thrilled to have some mobility back. (Refer to The Enemy I Must Face for the story of my condition.)

I took a walk last night. It wasn’t a long one, but it was a start. It was smooth walking for the most part and I enjoyed the mild heat and the green all around me. (We have trails on our property so I don’t have to actually go anywhere.) I looked up and watched the birds as they flew over and smacked at a few little flying pests flitting about my face. Even that annoyance didn’t bother me because I was enjoying being able to walk with very little pain! With any luck, this new medication will continue to “do it’s thing” so that I can walk most evenings.

I continue to do my water exercises, which feel wonderful! I am “riding my bicycle” (stationary peddler) every day and I found a DVD of Yoga for Arthritis. I’m not sure I can do many of the poses, but I will do a few now and again, in hopes that I will regain strength after some time and be able to add more. My dietary changes, well….I keep goofing up, however doc said I had lost 20 lbs. so I must’ve done something right!

One day and one walk at a time…..I shall persevere.

WARNING: Some Doctors Are Hazardous To Your Health

I went to a doctor a couple weeks ago and really got nowhere in terms of pain relief. I left wondering “What the heck was I thinking going to this guy?” But how would I have known he was a jerk, since I had never met him before? Now I know.

My records actually made it from the orthopedic doc’s office to “jerk” doc’s office. I didn’t have too long of a wait before being called back or before the doc actually came in. I was surprised about that! The nurse took down all my vital information before telling me the doc looked like Santa Claus and that he was easy to talk to. Then she left the room.

Now, don’t get me wrong – I didn’t DISagree with everything this doc told me. I just don’t like his bedside manner and his knowledge, or lack of knowledge would be more accurate. He first told me I needed to lose weight. I know this. I’ve been struggling with my weight since my first child was born and wasn’t diagnosed with hypothyroidism until my youngest child was 3. I’ve been on meds for all this time and granted sometimes I don’t eat right, but even when I have consciously made an effort to lose weight, nothing happens. I had lost some weight recently though and I am still working on it. Doc proceeded to tell me I need more exercise. REALLY? And how does he think I’m going to do that when I am in extreme pain 24/7? He told me I need to eat a low fat diet. He asked me what do I eat for breakfast? I told him I normally don’t have breakfast. He snipped at me, “You really should eat breakfast; even if it’s just a piece of sausage or bacon!” WAIT. WHAT? Didn’t he just tell me to eat a low fat diet?

Because of my response to the exercise suggestion, he next asked me what I was taking for pain. I told him I had tried all the OTC pain relievers and the only one that helped a little was Aleve (Naproxen Sodium). I told him I didn’t like taking it all the time. He asked me why and I told him I didn’t like the Increased Risk of Heart Attack and Stroke that accompanies this drug. I could hear in his voice how shocked he was at my statement. He said to me in a tone that I didn’t like, “Where the heck did you hear that?” I told him since I had found out I had arthritis I’ve been doing research and all my sources said the same thing. He said he had never heard that. He said that Naproxen Sodium was the drug of choice for arthritis pain. He looked me straight in the eye and told me I was WRONG. Then he told me that I must have it confused with Avandia, which is a medication for diabetes type 2. He said that Avandia may be pulled from the market for the same thing. I knew it wasn’t Avandia because I wasn’t researching diabetes medications. I was researching arthritis and arthritis pain relievers. I told him that ALL of the NSAIDS have the same warning. He sat there and flat out told me I was wrong, again, and that I must have Avandia and Aleve confused, after all they start with the same letter. Give me a break! Ok, I’m not the most intelligent person in the world but I am not stupid and I was very resentful of his tone as well as his assumption that I must be stupid. Now, I don’t mind a few side effects. I know I may not have all the side effects, heck, I may not have any of them. However, I DO mind life threatening warnings.

Now, even though I was uncomfortable taking this medication, he prescribed it anyway! At this point I was just fed up and wanted out of there. But before I left I decided to test him. In my research I had learned that the only way to rule out rheumatoid arthritis is to run a specific test. I asked him, “What kind of arthritis do I have?” He proceeded to tell me the difference between rheumatoid arthritis and osteoarthritis. I was fuming. I already know the difference because I researched it. I told him very sternly, “You didn’t answer my question. What kind of arthritis do I have?” Then he told me it was osteoarthritis. I asked, “How can you tell that just by looking at me and my records?” He told me it was because I don’t have the typical curling deformity of the fingers that accompany rheumatoid arthritis. Can’t people have RA without having it advanced to that degree? I’m disgusted at this point and I really want to kick him in the balls. He didn’t run any tests, nor did the orthopedic doctor. He could be absolutely right in saying that I have osteoarthritis but his bedside manner leaves a lot to be desired. IMHO, he is making an assumption without doing tests. Experience? Perhaps. Laziness? Perhaps. Arrogance? Perhaps. Probably all three.

Here’s the icing on the cake: I was desperate for pain relief so I got the prescription filled. Along with the medication comes a few pages worth of drug information; side effects, how to take the medication, what to report to doctor, etc., etc. But the very first line of one page reads WARNING: MAY INCREASE RISK OF HEART ATTACK & STROKE.

So Doc, I was wrong huh? Maybe you’d better do some research of your own. I am sending a copy of this drug information page to him in hopes that he will do just that.

Update – The Fight Continues

In a previous post I made a list of 4 things that I am going to work on in order to become healthier. I list those things again, below, but this time with the actions I have taken thus far.

#1. More Exercise – My Dad bought me stationary peddle exerciser. I am using it twice per day for at least 10 minutes at a time. I will increase the amount of time as I become accustomed to it. The first day I used it, I went 10 minutes and I hurt all night long. My enemy (arthritis) was not happy with me. Too bad.

#2. Change My Diet – I have begun eating healthier foods. I am trying to be aware of what I’m eating at meal time. I’m drinking more fruit juices, water & milk. I am eating more fresh fruits and veggies, nuts & whole grain products and cheese. I will not lose my chocolate so I am eating dark chocolate, but not every day!

#3. Use Essential Oils & Herbs – I made myself some Arnica Massage Oil, which I use each night to help ease the pain and relax my muscles. I use epsom salts and a dab of peppermint essential oil in my bath water; but so far I take more showers than baths. I dab a little lavender essential oil on my wrists when I begin to get depressed or anxious. It’s very calming. It’s really too hot & humid right now to enjoy a cup of Chamomile Tea before bed, but when it cools down I’m on it! Then maybe I will sleep better.

#4. Reduce My Weight – This is the one that will be the hardest of all to accomplish! BUT using the list above, my weight should slowly be reduced. I don’t have a scale so that’s on my list of things to do.

I am still drinking an 8 oz. bottle of Elations each day, taking MSM, Vit. D & Calcium supplements, drinking 6 oz. of black cherry juice each day. As much as I don’t like to do it without a Doctor’s guidance, I’m taking 1 Aleve every 12 hours. It’s the only thing that will help even a little bit. I am feeling a bit better. The pain is still there, I’m still a bit depressed but it’s hard to distinguish between depression from the pain and depression from personal family matters. BUT I’m going to do whatever I can and fight this enemy of mine! Of course, I’ve yet to finish jumping through all the hoops necessary for Medical but I’m not done fighting yet!