Patient Focus Friday: Hillary

Patient Focus Friday (2)

As part of an ongoing series, I am interviewing people with chronic illnesses and telling their stories. I plan to do a post every Friday with a new story and today I’m starting with my own.

If you would like to be featured on Patient Focus Friday, please get in touch through my Contact page or by emailing me directly at infohillaryrobyn@gmail.com. 


What is your first name and age?

Hillary, 28

What is your chronic illness/injury?

After an auto accident in 2012 I tore my rotator cuff and labrum in my right shoulder. After a year of pain and physical therapy, I finally underwent a surgical procedure to find out exactly what was wrong and to try to get it fixed. During surgery, the doctor discovered severe inflammation, muscle tearing and bone spurs. They repaired my rotator cuff and labrum, scraped the bone spurs out and removed my glenoid bone. I went to therapy after the surgery, but it didn’t help.

A year later I had to undergo another surgery, which discovered more tearing, tightness and bone spurs. At the same time I underwent a right sided carpal tunnel release, as being in immobilization for so long had damaged the nerves in my arm and hand, which lead not only to the carpal tunnel syndrome, but also to something called lateral epicondylitis (also known as “tennis elbow”) in my right elbow.

I recently discovered that I have reversed curvature, bone spurs, four bulging disks, slipping vertebra and narrowing of the spinal cord in my cervical spine. This causes pain in my head and neck. Along with my shoulder problems, I also have constant pain in my right shoulder, bicep, elbow, forearm, wrist and hand. None of these problems have been cured by any means of treatment I have tried so far, including physical therapy, massage therapy, injections and surgery. I am now at the last resort, which is pain management.

Recent blood work has also shown the possibility that I have an autoimmune disease, which is something that I am looking into currently.

When were you diagnosed?

I was officially diagnosed for my shoulder in 2013, lateral epicondylitis in my right elbow in 2015 and my neck problems this year.

What are the symptoms you deal with?

Daily pain, which is intermittent but frequent. With medication I am able to stay at a 2-3 on the pain scale. I am always on the verge of a headache and often get the feeling that there is a rubber band around my shoulder. I experience pain, coldness and numbness in my right arm and hand daily. If I move the wrong way, I will get sharp, shooting pains down my spine and into my head.

I also deal with feelings of guilt, uselessness and depression, all surrounding my inability to work full-time or do some of the things I used to do.

What alleviates your symptoms?

Other than my medications, the most beneficial methods are rest, exercises, stretching and heat, mostly. When it comes to my neck and shoulder, though, massage can be very helpful. Because the muscles in my neck, shoulders and upper back are perpetually spasming, sometimes the only way I can crack my neck is when the muscles relax, which only occurs after a massage. I am very lucky to be married to an amazing, empathetic and kind man who goes out of his way to help me, including giving me neck/shoulder massages almost on a daily basis.

What exacerbates your symptoms?

Sleeping in certain positions, sitting in one position for too long (when typing, looking at my phone, etc.) and repetitive movements. If my neck and elbow haven’t cracked recently they become very painful. The pain flares if I do any strenuous activities with my right side or move my neck in certain ways.

What is something you wish people understood about your illness/injury?

Just because you can’t see it doesn’t mean it isn’t there, and just because I don’t say it doesn’t mean I’m not in pain. My pain and your pain is different; it’s all well and good if you can take an Aleve to help with your shoulder pain, but I can’t. I don’t care how many family members you have who have had the same procedures I did and came out okay; everyone is different and every surgery runs the risk of making the problems worse, which is what happened to me.

Just because I have to take narcotic pain medications does not mean I am a junkie or an addict. I do not enjoy taking them and I really don’t enjoy the process of getting them. It’s not fun, they don’t make me high and I’m not doing anything wrong by taking them as I am prescribed. I’m sure you know people or have heard stories about these medications, but do not lump me in with anyone else. You don’t know what I’m going through or what I’ve been through.

In which state do you live?

Florida

Have you been affected by opioid laws in Florida? If so, how?

I haven’t been, yet. However, I expect that will change with time. There are rumors that Florida will follow the footsteps of other states and enact a law which will make it to where you can only have a certain milligram amount a day. Luckily, I am below that limit but with everything being up in the air I am constantly preparing for the worst.

Do you have any advice for other people going through a chronic illness/injury?

Don’t let people bully you into thinking you’re a bad person or you’re lazy or you’re bringing this upon yourself. Take care of yourself and try not to feel guilty (easier said than done, I know). Don’t overwork or push yourself too hard just to appease other people.

You are doing the best you can with the cards life dealt you and that’s all you can do. You are worth just as much love and respect as anyone else, and don’t let anyone tell you differently.