Stop Comparing

When I was diagnosed with breast cancer, I quickly learned every person's cancer is different - even if they have the same diagnosis. (This is why it is so hard to treat.) I learned not to compare myself to anyone else. In every support group, even if we had the same diagnosis, we learned how different all are.

I get this. We are all different. We can't compare our cancers to each other.

But.... why do I keep comparing my rheumatoid arthritis to others? I have to stop comparing myself. My mother has had RA since 1989 and a friend (exact same age as me) has had RA since the early 2000's. Their differences are striking. My mother was diagnosed when they only treated RA when it became symptomatic so she has many of the deformities and issues common among patients treated according to the old standards. But her health is much more stable than mine. My friend has had RA and has very few problems. Until she retired (for non-health reasons), she worked full time including much business travel and long days.

Me? I struggle with fatigue, pain, and more fatigue and more pain. How did I get to be so special? I try not to compare myself with my friend but I do.

As medical diagnoses go, everyone is unique. It doesn't matter if three people have the exact same diagnosis but because of their genetic make up, medical history, and other issues, each is unique. No two are alike (boy am I glad I am not a doctor trying to cure people). And everyone interprets everything different. Some people might be distressed by a little nausea and others may not think it significant.

The lesson that I need to better learn is that I need to stop comparing myself to anyone else's medical stuff. I am unique and so is everyone else. I just need to focus on this life lesson. I think I will stop whining as much if I did. Everyone else will appreciate that part.

Stand by your patient

Nothing rips apart a relationship like an icky medical diagnosis. First you have to deal with your so called 'friends' who head for the hills at the first sign of anything yucky, especially the word 'cancer'. They are not your friends. Forget about them.

Then you have friends and family who obsess about your ailment and call and email constantly for the latest worst of wisdom imparted by your medical team. They often offer their 'advice' in return saying things like 'I can't understand why your doctor hasn't given you [insert the name of the treatment given to their neighbor's dog walker's cousin's hair dresser when they had a completely different diagnosis fifteen years ago]. They also want to know every time you have the least minor issue so they can be 'informed' about how you are doing. You have no idea why they need to know so much and what they are doing with all this information but feel invaded by their constant barrage of inquiries. Again, they are not really your friend either.

The people who are your friends are the ones who stop by and visit, call and just listen, and treat you like a human being, while you are trying not to lose your lunch after your latest infusion. Hang out with these people.

Finally, you have the person closest to you: your spouse/partner/best friend. Too many people find themselves suddenly single after a cancer diagnosis, in particular. I know we had our ups and downs with my breast cancer diagnosis. But I can't tell you how many friends have spoken of their spouse's lack of support, or even departure.

My husband has been wonderful. For the last three years, he has given me my weekly injections for Rheumatoid Arthritis, because I cannot deal with the idea of giving myself a shot. He accompanied me to most of my doctor appointments after my breast cancer diagnosis, where he was allowed to see everything other than my weight and any pelvic exams. He came with me to every chemo infusion where we played scrabble during the infusions (and he would delight in winning when the drugs kicked in and I could only form two letter words). He only stopped going with me when I insisted he couldn't keep missing work for weekly infusions. Now he will go with me to any medical appointment I request him to.

Unfortunately I have friends who are forced to go to difficult appointments alone or are forced to find rides for infusions or other times when they are not in shape to drive. Their partners find excuses as to why they can't help out. Or have left them completely to cope alone with bad medical news and the accompanying job loss and reduced income.

All I can say if you have a friend or partner coping with a medical disaster, don't walk away from them. If you have problems emotionally coping with their medical problems, please do not leave but try to face your concerns and become a better you. Its you who has the problem not them.

That 'Here We Go Again' Feeling

As a professional patient, at some point when faced with a diagnosis instead of panicking, you get that 'here we go again' feeling. You skip the whole stress and panic stuff and go straight to the 'how the hell are we going to fix this now'?

Honestly I do get stressed about bad medical news but I skip the panic crap and go to the 'here we go again' level. Its sort of like you become deadened to the stress of more medical crap. And it quickly is only crap.

Its sort of becoming brain dead or numbed to yet another medical disaster. They just seem to lose their impact.

Sometimes I feel like I only realize the real impact of what the doctor said to me when someone says to me 'that must really suck' or something to that effect. This is why I have therapists and other support people to help me digest all the medical crap.

I mean how much more can a person take? You told me I had cancer twice, two chronic incurable ailments, and one body falling apart syndrome that can't be cured. What else could there be? I will remain calm..... As long as I can.

The Big Gap in Treatment for All

Someone said something the other day that hit a nerve for me. 'How well do you think the emotional needs of patients are met?' And I started thinking.

When I was diagnosed with thyroid cancer, my emotional needs were not mentioned. At all. When I first destroyed my knee skiing, no mention was made of the changes I faced in my life. That was when I first needed to give up some of my favorite sports - skiing was never the same again. When I had hysterectomy, I was given the advice by friends to go to hystersisters.com to answer a lot of emotional questions and the long term impact of the surgery. I do not think my doctor gave me any advice. I mean I may have been given a pamphlet but that was it.

When I was diagnosed with breast cancer, I was definitely given a folder of information on resources - support groups, lymphedema, hair loss, Look Good, Feel Better programs. But I was the one who said I am going to a support group, asked for a therapist, and all that. My emotional needs were sometimes asked about but I felt I was the one raising the issue of how I was coping.

When I was diagnosed with fibromyalgia and rheumatoid arthritis, my emotional needs were not mentioned. these diagnoses are not minor, they are pretty much life changing. And doctors didn't think my emotions were an issue.

No matter what the doctor tells you, how often do they stop and ask you how you are doing emotionally? Somethings are minor - you get the flu, sprain your wrist, etc - you will heal and go back to normal. But after a diagnosis of RA, MS, fibromyalgia, heart attack, stroke, or anything else with a significant long term impact on your health that will change you forever, shouldn't the doctor and the rest of your medical team consider your emotional health as much as your physical health?

Being a complainer

There is a difference between complaining and being a complainer. I complain sometimes, we all complain. And we should. We should speak our minds and make our wishes known. But if we complain too often we can become complainers where we are either Chicken Little or the Boy who cried Wolf so that when we have real complaints, they get lost or overlooked.

Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.

I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux  as the cause, which is very common.

When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.

With my medical background, I know you are never too young, too old, or too anything for a diagnosis.

I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the  medical professionals as much information relating to our health problems to help them help us.

We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.

I'm so smart I could diagnose myself

Yesterday will probably go down as one of the not so greatest days in my life. Why? Because I pretended I was a healthy person. And it didn't end up so well.

Allow me to provide some of the story. We had to dig up a lot of the plants in our garden because our retaining walls are collapsing and we have to pay big bucks to a mason to fix them. It has been very hot and dry here for the past few weeks. 90s for the last few days even - which rarely happens in Boston. My poor plants which should be in the ground and in the shade are in pots in the back yard in the hot sun.

I noticed yesterday that some of them were very dry and wanted to water them. The spigot in the back yard was put up by giants and I have to stand on something to reach it. I pulled out my usual little 12" high little table to stand on. As I reached up, the table collapsed and I felt my knee bend sideways. That was a very bad moment. No one was home but the mason's assistant but he came to help me get back to the front door and inside. I could hobble.

But because of my extensive medical background, I knew exactly what to do. I went to the freezer and got an ice pack. Then I picked up the phone and called my doctor's office. I knew I needed an x-ray and possibly more. They suggested I go to the walk in clinic last evening but I declined and asked for an appointment today instead. But as I sat with my knee elevated it really started to hurt (even through all my RA/fibromyalgia meds) and I asked my husband to take me to the walk in clinic.

I saw a doctor and got an x-ray as I expected. The bones look fine (as I expected) but the doctor thinks there is ligament/muscle damage (as I also thought) and referred me to an orthopedic doctor. This is exactly as I assumed would happen. I need to call today if I do not hear from them by noon to get to see a knee doctor. (Maybe I should have just called my knee doctor first -  yes I have a knee doctor, and an ankle doctor, and many other specialists.)

They did send me home with a knee immobilizer, a totally worthless piece of equipment as it forces me to overwork my hip (and my bursitis) and causes more pain than is in my knee. They also recommended crutches or a cane, both of which I declined. But I did ask my husband to find one of the crutches in the basement as it turns out I need it for stability and weight bearing.

So one moment of pretending I was healthy allowed me to sprawl on the backyard in pain. The good side? I really need a positive here. I have a reason to sit around on my butt all day (except going to the dr and possibly getting my nails done) with an ice pack on my knee during this 90 degree weather. I am not discussing the downside at this point because I am pretending it doesn't exist. Denial? Yes. But I did know what to do and what I needed medically right away.