I Wish Someone Had Told Me…

I have recently joined a few Facebook groups that revolve around service dogs. I want to take advantage of all the resources out there and I thought this would be a good way to find out what other people are doing and maybe get some advice from the ‘been there done that’ crowd. That isn’t what this post is about. I will get there in a minute.

Something I have noticed in these groups are questions.

“Should I get a service dog?”

“Can I get a service dog for ____?”

“Who decides if I can have a service dog?”

“What if my doctor doesn’t think I need a service dog?”

You get the idea. It got me to thinking. A lot of times your doctor doesn’t tell you what you need and you have to figure it out for yourself. Now, I am not talking about things like stitches or medications or diagnostic tests. I am talking about all those assertive medical devices that just make your life easier. Worse yet, these are the kinds of things we often don’t get or put off getting because they scream “I am disabled!”

Follow me here. I have had trouble with my hip for longer than I can remember. It predates all of my other health issues. Because of the misalignment of my hips from scoliosis I have walked with some kind of limp for most of my life. It’s quite possible that limp is what put the stress on my left knee and caused the problems I have had with it since I was a teenager. The thing is, back in the early 1980’s doctors didn’t know as much about the long term effects that scoliosis has on the body like they do now so if this was the case, it was overlooked.

Anyway, one day I was just being lazy and didn’t get up to change the TV channel after wrestling and ended up watching a rerun of House MD. I fell in love with the show immediately and went out and bought all the seasons that were already out on disk and binged watched to get caught up to where the series was on TV.

After watching several episodes something dawned on me. House was in chronic pain and walked with a cane. I was in chronic pain. Maybe I needed a cane.

Using a cane to make walking easier never dawned on me. I always thought they were something that old people used because they were old. So much for my all my conscience efforts not to stereotype anyone. Seriously, I never thought about why people used them.

House was taking Vicodin for his pain. A lot of Vicodin. I was sick of doctors throwing pain meds at me and not doing anything. They didn’t help much. I found myself relating more and more to House and his attitude about pain and being miserable.

It still took me weeks, probably months, to break down and purchase a cane. It’s something I probably would have never done had it not been for House. My doctors never suggested it. It probably didn’t dawn on them either, or they didn’t realize I was in enough pain that it was affecting my mobility.

The doctors that came later would see my cane and say, “You are too young to be walking with a cane.” They would then proceed to throw pain medications at me. No one really looked at my back. The one orthopedic that did told me that it “didn’t look that bad.” Meaning I shouldn’t be in the pain that I was in or have trouble getting around. Chances were that I was exaggerating and was told that I physical therapy would fix everything. The doctor was sure that I was just seeking pain medication.

Joke was on him. I am allergic to 99% of narcotics. Like anaphylactic allergic.

Needless to say, I didn’t get much help out of him. The last orthopedic I went to refused to take me on as a patient after meeting me because of who my primary care doctor is coupled with the fact that I can’t take pain medication. Yes, another doctor that just wanted to throw pain meds at me and send me on my way and it wasn’t something that my PCP would allow him to do.

I am getting off topic here.

After I started using the cane, I had a friend at the time ask me why I didn’t have a handicapped spot. I told her I didn’t think I needed it and that there were people who needed it more. It took my cane hitting a patch of ice in a parking lot one winter and me landing on my ass (causing more pain in my hip) to realize that I really shouldn’t be walking across parking lots. I broke down and asked my neurologist to sign the DMV paperwork. She did, no questions asked, because I needed the cane. She also asked why I hadn’t asked for it before.

Because I didn’t think it was needed. Boy did I get lectured.

These are the type things that doctors aren’t going to tell you that “need”. At least not most of the time. I am sure there are circumstances and illnesses where doctors will suggest canes, walkers, handicap spots, service dogs, whatever, but it’s not the norm. They expect you to be proactive about your health and know if you need something. It’s the doctors job to treat your illness, to ease your pain. It’s your job as the person living with a chronic illness or pain to make certain decisions on how to help your self. Would a cane help? What about a brace? Are there days you need a wheelchair? These are the kinds of things that if you think you need them, your doctor will support you.

It would have been nice if someone had told me this. I wish someone would have told me that I would have to make the decision if and when I needed a cane. It’s probably also going to be my decision when I start using a wheelchair. My doctor isn’t going to say to me, “It’s time you started using a wheelchair.” We have discussed that there will be a day that I will need a wheelchair, and we both know that day is getting closer and closer. However, he’s not going to be the one that makes that decision. It will be up to me to decide when I can’t get around well enough with a cane.

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