I Started a New Blog

I started this blog when I was diagnosed with breast cancer in 2007. Blogging really helped me cope with my cancer and its treatment.

However my life has moved on. I have blogged about it in the past - that my life was changing - breast cancer is no longer the main focus in my life.

My chronic ailments have replaced that focus. While breast cancer never really goes away it turns more to be chronic illness than a terminal one, unless metastases appear. So I have a total of four chronic illnesses - breast cancer, thyroid cancer, rheumatoid arthritis, and fibromyalgia. I also have chronic physical ailments - bone spur, desiccated disks, and degenerated disks.

I may continue to post here periodically but not as often. My primary new blog is "Life With Chronic Illnesses".

Am I or Will I Get Better?

I get asked often, am I getting better? Have any of my doctors found a miraculous treatment for me?

The answers are and always will be a big fat 'no'.

There are different kinds of ailments out there. They are (in my non medical terminology):

• Acute - an ailment which happens and gets better. Think a cut, the flu, appendicitis, Lyme disease.
• Chronic - an ailment which occurs and lasts and lasts and lasts. Think things like arthritis, fibromyalgia, degenerating disks, etc.
• Terminal - an ailment which will kill you. "Terminal illnesses or infections are considered incurable when there are no conservative therapies available which will eliminate it from the body." Think cancer*, untreatable MRSA infections, etc. 

My medical history includes several chronic ailments that have no cures to date but are treated to minimize deformations and relieve pain. These are: rheumatoid arthritis, degenerating disk disease, and fibromyalgia. Then I get to add a couple of cancers on top of that as well as significant injuries which are not repairable (think bad knees). Every so often I get an acute ailment like the flu to add to the fun.

My treatments all focus on making me feel better. But nothing will cure all of me. So no, I will not get better. But thanks for asking.

*Cancer gets the asterisk here because sometimes cancers are treated as chronic after standard treated. You can never be sure you got all the cancer out of your body. 

The Wrong Doctor

Synopsis of a very sad story: A man with horrible pain issues was cut off of pain meds by his doctor and as a result took his own life.

The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.

I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.

Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.

There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.

A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.

Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!

Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

Disease combinations = confusion and lack of support

When you get a disease, you learn about the symptoms, treatment, and when you will feel better. Add a second ailment and things get confusing. I was told I had rheumatoid arthritis and fibromyalgia about the same time. And I have osteoarthritis too.

I was also told it can be hard to tell which ailment is causing which pain. I can tell sometimes - when a ribbon of pain rushes across my back, that's fibromyalgia. When my knees grind as I walk down the hall, that's osteo. When my fingers decide not to cooperate, that's rheumatoid. When I need a nap, that can be fibromyalgia and/or rheumatoid.

But then I look for support - medical and emotional. The medical support is usually fairly good but then sometimes I get told 'you need to ask your doctor for that other ailment about that'.

And emotionally, I dig around to find people like me. I have found a support group for those with chronic pain but its not that convenient for me. I found a fibromyalgia support group and don't really like how its run. (Its run well, but its just not run in a way that works for me.) I was just told about a new support group for people with chronic illnesses (and told that unfortunately I am eligible for that one too) that I may try.

I have also looked around for medical resources and bloggers who are like me. I frequently find medical articles and studies on one ailment but not on people with more than one. I know most medical research is done focused on one ailment but there must be more people like me. I haven't found any really.

I did find a study that states that if you have breast cancer or thyroid cancer your risk is double (or so) for the other one. I know of two people (besides me) who have had both.

My complaint I think (if its really a complaint) is that the medical world is not set up for people with multiple ailments. Its really designed for one ailment at a time. If your treatment changes you need to wait for that medication to kick in before you can go on to the next ailment. This can takes months. Most RA treatments take three to six months before their impact is felt. So that leaves me stuck in pain or cranky. Or just confused and isolated.

Ailments on a holiday

Today is Christmas and for Christians around the world it is a special day. Other cultures have their own special days - which should be respected just as much as the special days for your beliefs. Holidays are not a day to argue about which belief is better. Its a chance to relax and enjoy ourselves with our families.

It is not a shopping day nor a work day (unless chosen by the employee). Unfortunately the one thing that does not ever get or take a holiday is an ailment, especially a chronic one.

I have just a few ailments and am also recovering from the flu. After a night of insomnia (when I tracked Santa for a bit of fun on noradsanta.org) as well as lasting flu symptoms, I am a bit tired and possibly cranky as well.

I wish ailments would take a holiday from time to time. Shouldn't we be able to feel decent for a little while from time to time? It would be nice.

If you know someone with ailments who is not able to get out and spend much time celebrating the holiday, please take a moment to give them a call and chat for a while, even suggest a quick visit. (But never unexpectedly show up!!!! Us ailment people have a tendency to hang out in our pjs for longer than most and take naps.) Our ailments are persistent and we can use the company. So in the holiday spirit, take a moment to visit with those who would appreciate it most.

Support Group Please!

I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.

I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.

I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.

Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.

I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.

There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.

And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.

Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.

I'll keep trying. But I need to get through moving first.

Spoon Theory (Or How Many Spoons Is That Worth To Me?)

Do you know about the spoon theory? No, its not something you learned in high school physics and since forgot. Its about life with a chronic illness. Christine Miserandino over at "But You Don't Look Sick".

This has come up in a couple other blogs recently and someone emailed me about it earlier this week. You can read the entire theory here but to summarize (poorly):

If you are healthy, you have an unlimited supply for spoons to get you through the day. As you start your day each task costs one spoon. This includes taking a shower, getting dressed, making breakfast, standing in line at the coffee shop, taking the stairs instead of the elevator up to your office, working straight out all morning, going to lunch, etc.  Each task is a spoon.

But if you have a chronic illness you start your day with a set supply of spoons. Probably about 12. If you do too much you will run out of spoons very early in the day. If you use up too many spoons, you might have fewer spoons the next day. Or if you run out of spoons, you need to spend the rest of the day resting/recovering.

This is my life now. Every day I need to evaluate what I am going to do for the day and figure out how to  use my spoons. I look at as 'how many spoons is that worth to me'. I have the list of what I want to do and what I need to do and evaluate my spoon count.

I had a very stressful, terrible day yesterday (thanks to bankers) and I didn't sleep well so my spoon count is bit low. I want to go to the gym, make four pies, and clean up for my brother's arrival with his four kids late this evening. I will be napping by 3pm.

I will rest for a bit longer this morning and attempt to go to the gym. Once I come home, I can make a pie and take a nap while it bakes. And repeat as needed.

Tomorrow is Thanksgiving which means lots of stuff to do, stretching out of spoons, and splitting what I want vs what I must do. I need to get as much rest as I can today. Each choice will require me to evaluate how many spoons each is worth to me.

Talking the talk if you haven't walked the walk

This eternally irks me - people who try to talk the talk and they haven't walked the walk. It is when anyone - your doctor, family member, friend, neighbor, cousin's hair dresser's dog walker's uncle - tries to tell you how you feel or should feel or be treated.

And just how did you get this knowledge if you haven't been in my shoes? This is when my friends try to tell me that I will feel better if I take a nap. Or someone else who thinks that I can be cured by something - a doctor appointment, procedure, nap, or something else. Or my former acupuncturist who thought my lymphedema would resolve itself.

I can't forget about the people who tell me about their family member's previous treatment for a similar ailment years ago and how its probably the best thing for me so I should change to another doctor who will give me that same dated protocol.

Let me just say to all of you: you have no idea of what I am going through. I know people who have one or two of my ailments and realize that they only deal with a portion of my life. I think they wonder how I cope.

Then I meet people with one or two of my ailments and/or a whole bunch of other ones and wonder how they cope. I would not attempt to give them any medical advice. Actually those people and I usually get to share tips such as - going to a specific support group, or compare diet modifications for symptom relief, or thoughts on disability insurance. Or we compare doctors and hospitals. But our treatment protocols can be compared but never recommended.

We all realize that we are very different people and our ailments require differing treatments. We are walking the walk so we can talk the talk. We know how to juggle our medications and side effects. We know how to manage fatigue and stress and temperature changes. We understand the significance of ailment progression. We know about long term relationships with doctors. We know what chronic means and how our ailments won't go away and we will continually face health challenges.

If you are not one of these people, please don't give me health advice.

More wonderful medical news

Of course, I get all the fun stuff. I have both rheumatoid arthritis and fibromyalgia. It never ceases to amaze me that some people do not know what either are. Yes, Virginia there are disgustingly healthy people out there who do not know about yucky unhealthy stuff.

So it overjoys me to read new research about my ailments. Especially when I find research that says the really lucky people who have both RA and fibro, have many more problems with RA than people without fibro.

One article is titled: Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With Rheumatoid Arthritis. That title sort of says it all doesn't it? So even if I don't really have high disease activity, I will just feel like I do.

This article is from Egypt and is titled: The Impact of fibromyalgia on disease assessment in rheumatoid arthritis. I has some lovely charts and tables that compile the list of issues.

Table 2. Somatic manifestations of studied rheumatoid arthritis patients.

Somatic manifestations percentage (%)	Patients		P value
	RAF (25)	RA (25)
Widespread pain	100	28	less than 0.001
Sleep disturbance	68	32	0.011
Fatigue	92	52	0.002
Morning stiffness	56	36	0.156
Headache	56	24	0.021
Depression	88	40	less than 0.001
Anxiety	72	40	less than 0.001
Parasthesia	76	32	0.002
Cognitive symptoms	56	16	0.003
Dysmenorrhea	20	20	1
Irritable bowel syndrome	16	4	0.157

RAF: rheumatoid arthritis with concomitant fibromyalgia, RA: rheumatoid arthritis.

When I was diagnosed with both RA and fibro, my doctor told me I probably would not be able to tell which ailment caused which pain. Sometimes I can but sometimes I can't. And sometimes I just don't care.

But now that I know fibro makes my RA feel worse, I'm not going to suck it up. I think I should switch to chronic whininess. I think chronic whininess outweighs chronic pain. Some research news inspires whininess.

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Fibromyalgia issues

There has been a lot on line recently about fibromyalgia awareness. I don't need any more awareness thank you but felt I should share a bit.

My personal favorites are weight gain, muscular pain, fatigue and insomnia (thats a nice pair), and anxiety & depression, body aches, tender body points, and last of all, cognitive impairment a/k/a Fibro Fog.

Here are a few more notes from this article:

1. Fibromyalgia is primarily characterized by widespread muscle pain and tenderness.
2. Fibromyalgia can occur as a primary or secondary condition.
3. Fibromyalgia is often misunderstood and symptoms are often unrecognized, causing the syndrome to remain undiagnosed for months or years.
4. Ninety percent of fibromyalgia patients suffer with severe fatigue or a sleep disorder.
5. Fibromyalgia is associated with additional symptoms which seem distinct themselves but are actually included in fibromyalgia syndrome.
6. There are psychological as well as physical aspects associated with fibromyalgia.
7. Since there is so much variability in fibromyalgia, the syndrome does not manifest itself identically in all patients.
8. Diagnosis of fibromyalgia focuses on tender points but there is no definitive diagnostic test for fibromyalgia such as a blood test or X-ray.
9. Medication and non-medication treatments are used to manage fibromyalgia.
10. Fibromyalgia affects more women than men. The prevalence of fibromyalgia is between 2 and 4 percent of the population.

 But wait there is more!

You can read about the causes of fibromyalgia s well. And how it is a chronic condition and no it has absolutely nothing to do with any kind of arthritis.

Life in pain

Recently the National Pain Report did a survey on women in pain. I was one of the 2400 some participants... You can read the results here if you wish.

I have a few takeaways from the survey:

• If you aren't happy with your doctor, for example they tell you your pain is all in your head, it might be time to find a new doctor.
• If you have problems with the side effects from your pain medication (constipation is common with opioids, for example), it might be time to find a new medication. I am on an opioid pain patch and do not have constipation issues (if you must know) but I get a lot of pain relief with it.
• It is nice to know I am not alone with multiple pain issues
• Women do feel pain differently then men.

But then it is sad to know that women still feel discriminated by the medical system.

But we are all still here....

Chronic can be a good thing

When I was in cancer treatment, I was told cancer was being treated as a chronic illness instead of a terminal one. We all liked that. It was nice knowing that they didn't expect you to die anytime soon.

Living with a terminal disease is not fun. Your life is counted in weeks and months instead of decades and generations. But living with a chronic disease is not that great either.

We all know we came with an expiration date - life is a terminal occurrence. We are all going to die some day. But with a chronic disease, life just becomes a little (or a lot) less fun.

I have a couple of those chronic conditions that make life less fun. And that's how life goes for me. If you want to learn more about living with chronic ailments, this is a wonderful essay on life with chronic ailments.

And how you wake up each day with hope to be free of pain and and maybe there will be a cure. 

Life with chronic ailments is better than with a terminal one but how much is up for discussion.