What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

A simple test

Right now the only way for a doctor to diagnose fibromyalgia in a patient is to press on a bunch of tender points. If more than so many of them are sore, the diagnosis is fibromyalgia. How easy. Not.

First of all when a patient shows up complaining of pain, other tests are done to rule out all sorts of other conditions. This can take time. As in months or years even.

It takes three to five years for a patient to be diagnosed with fibromyalgia. That is a really long time to live in pain. And often fibromyalgia is diagnosed with other conditions.

I was told I have fibro and have rheumatoid. We are trying to get the RA under control so we can then focus on treating the fibro pain. I was also told that it is often impossible to distinguish pain caused by RA vs. the pain caused by fibro.

I am in the state of still trying  to get the RA under control so we can talk fibro pain.

But now there is good news. There is a new diagnostic test to diagnose fibromyalgia. It is supposed to be 99% accurate. The problem is that it costs $744 and most insurance companies do not cover it. [That needs to change.]

And even more good news there are two more tests being developed that look at blood markers to diagnose fibro. These are still in development but represent lots of progress.

I will talk to my doctors about the new test and to my insurance company. Because the diagnosis criteria are relatively vague, in my mind, I think I would prefer a solid yes/no test. And if it could reduce the three to five year time frame to diagnose fibro for others, even better.

More about fibromyalgia.

One Minute Medical School on Fibromylagia, in case you were trying to figure out what it is.

By the way, I hate swimming so that's not happening.

Want vs can

As I have been cutting back in my life, I have run into some misunderstandings. There are people who think that I am not doing as many things  in my life due to the fact that I don't want to. But the reality is that I cant do everything I used to do.

I used to go for a daily walk. Yesterday I went for a walk because it hit 60 degrees (finally) on  one of my favorite routes through the conservation land that I used to do easily. When I came home and had to lie down for a bit and was hobbling around for the rest of the day and almost bailed on cooking dinner.

I was at a meeting recently and someone said something about me not wanting to do everything I used to do for the group. They were wrong, I really can't. I think they look at me and think I look the same as I did six months ago but I am not.

Looks can be deceiving. Just because I do not look different, doesn't mean I don't feel differently. I am on more medications, in more pain, have less energy, and have much more difficulty in getting around. I am not a slacker but I just can't do everything I used to.

So before you look at me and tell me that I don't want to do something or I just need to suck it up and do everything I used to do, take a minute to think from my side and don't assume that I'm lazy.

I need to widen my interests

Yesterday I went to a luncheon sponsored by the New England Coalition for Cancer Survivorship with a friend. She has had breast cancer and remarked when we arrived that she wasn't used to seeing men at cancer events. Breast cancer events are mostly filled with pink clad women.

The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.

However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.

There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.

I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).

So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.

Fibro what?

So I was told last September that I have fibromyalgia by my rheumatologist. I had been referred to her by my pain management doctor who had been treating me for my back pain from degenerating disks. I also had pain in lots of other places that was getting worse over the years as opposed to better. His diagnosis to my rheumatologist was myofascial pain or fibromyalgia with possible rheumatoid arthritis.

Well the rheumatologist confirmed within ten minutes of meeting me that I had fibromyalgia. My pain doctor had put me on Savella, Lyrica, and Cymbalta at different times in the past to treat my pain. Those are the only medications approved to treat fibromyalgia. They are also used to treat other things which is why he tried them. None of them really worked for me.

Now there is a study done (because we needed another study) that Savella and Cymbalta don't really work for fibromyalgia and if they do the side effects can be pretty bad. And they don't do much for improving fatigue and quality of life. That is so helpful. Back to the drawing board to all you fibro medication researchers!

So what is fibromyalgia? In my none medical school terms, nerve pain is amplified and it makes you tired and cranky. Officially the symptoms are these:

1. "In 1990, the American College of Rheumatology (ACR) listed two primary criteria for the classification of fibromyalgia. 1) A history of widespread pain involving all four quadrants of the body (right side, left side, above waist, below waist) for a period of at least 3 months.
2. The second criteria from the ACR which points to fibromyalgia is, upon physical examination, the presence of pain in at least 11 of 18 tender points when touched or pressed with force amounting to the equivalent of 4 kg. or 9 lbs.
3. More recent data indicates that there may be an increased sensitivity to pain throughout the body, pain may be migratory (move around) or may exist as chronic regional pain. Most experts are said to believe fibromyalgia results from abnormal central nervous system function. Response to stress and psychobehavioral factors may also contribute to fibromyalgia.
4. Fibromyalgia primarily occurs in women of childbearing age. Children, the elderly, and men can also be affected. Besides the defining symptoms of pain and tenderness, there are many nondefining symptoms associated with fibromyalgia including:
• Fatigue, night sweats and sleep disturbances.
• Memory difficulties and cognitive difficulties.
• Tension or migraine headaches, temporomandibular joint syndrome, rib cage pain (noncardiac chest pain), chronic pelvic pain, plantar or heel pain.
• Fluctuations in weight, heat or cold intolerance, subjective feeling of weakness.
• Ear-nose-throat complaints, multiple chemical sensitivities and a wide array of allergic symptoms.
• Hearing, vision, and vestibular (balance) abnormalities.
• Heartburn, palpitations and irritable bowel syndrome.
• Evidence on echocardiogram of mitral valve prolapse, esophageal dysmotility (muscles of esophagus not working properly), neurologic conditions causing hypotension (low blood pressure) and syncope (fainting).
• Mood disorders such as depression and anxiety occur more commonly in people who have fibromyalgia. "

Of these I can say yes to 1, 2, 3, and 8 of the 9 bullets in number 4. I don't think I have the cardio issues.

But otherwise I am a very healthy person.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

Medical research can do nothing

 

But marketing can make you believe it did. I am overjoyed I tell you, overjoyed to read the news:
"Drugs to treat fibromyalgia just as likely to harm as help". Yes it is true. If you think Savella, Cymbalta, or Lyrica will help my, or anyone else's, fibromyalgia you are a victim of advertising and marketing. 

"“This is a very important study,” says Fred Wolfe, M.D. of the National Data Bank for Rheumatic Diseases. “There’s an enormous amount of advertising suggesting that these drugs really help, whereas the research data show that the improvement is really minimal.”"

And its not that the drugs don't necessarily work but that the side effects can cause more problems than pain they resolved. Great. Years of medical research down the toilet. (This is an example of while they had great intentions in their research they forgot the key phrase 'do no harm'. It doesn't help if a medical advance comes at a great expense to the patient. They achieved their goal but forgot about us patients. This is one example of many out there.)

Since I have been diagnosed with fibromyalgia so many people have said to me 'don't they have medications now that you could try?' The answer is yes they do. And I have tried Savella and Lyrica and I think Cymbalta already. I didn't have as many side effects but they all stopped working for me. And they interact with other medications I take so they have to be changed as well.

They should do more medical research and pay attention to the overall well being of the patient, not just resolving the pain.

Wow another 'day'!

Another ailment means I 'get' another day! My social calendar is filling up!

So what the hell am I supposed to do on these days? Am I supposed to wear a special color, make a sign, go to some event, tell everyone about my ailments?

I am confused. What do these days, weeks, months mean anyway? I know they are supposed to build awareness but are they just marketing opportunities. Take Pinktober for example. We don't want that to happen to every day, week, and month of the year. There should be something more to them.

Your genes at work

We all have lots of genes and DNA and RNA and all those little bitty muons and amino acids and proteins and lots of other little bitty things that make us up. We have never learned a lot about many of them but are beginning to find out more and more.

Do you remember when they said they could sequence the human genome and they said it would lead to medical breakthroughs? I think it finally is - at least to my non-medical brain.

Anyway, two new advances have popped into my little realm recently.

1. Fibromyalgia has been very hard to diagnose. There is no test. There is no real way to say yes or no you have it. Basically if you have pain at enough of certain pressure points combined with other symptoms, they say 'you have fibro'. Not a very technical way to do things.

There are little thingies in us called 'cytokines' (not that I really know what they do) but apparently it now seems they have seen that people with fibro have a significantly lower level of this cytokine. Hence they may be able to develop a test. This would be nice to have something definable. As long as it works. I mean there are tests for RA but 25% of patients with RA test negative on them.

They are also leaning towards saying that fibro is not a rheumatological illness but a neuro-immune ailment, different than RA.

2. There is a genetic element to rheumatoid arthritis as well. Where they are finding little regulatory tags in the white blood cells of patients with RA. Basically this means they are finding a switch that makes good cells go bad and let you get RA. And they don't even need to be near by they can be far away in your body, caused to switch by a medication or illness.

So this means they will be able to tell ahead who might be more likely to get RA and take preventative steps and increased monitoring.

I know this is all very technical and you can read the articles I have linked to for lots more science but we can call it progress I think.

Self Education

My week ends with a trip to my rheumatologist to discuss progress or lack of progress in treating my rheumatoid and getting it under control. I have had two other appointments with her. The first one was 'we really do not think you have RA but will figure it out and get it under control.' The second visit was 'even though I didn't think so, you do have RA and fibromyalgia so let's start treating it'.

Now it is time for the progress update and we can talk about medication allergies, disease progression, treatment lack of progress, fear of needles, pain levels, physical limitations, and all sorts of fun things that I am not sure I know that much about.

I do know some about fibromyalgia and some about RA. I do not expect to have to be able to distinguish between which pain is which - some of it is obvious, some not. But I do need to be able to understand what is disease progress and what is treatment progress. I need some education.

I used to always be good about studying ahead but now I will start cramming. Good thing there is a convenient snow storm which should keep me home tomorrow and give me the time to learn something.

Sleep

"Never underestimate the power of a good night's sleep."

I don't know who said that but it is true. Maybe its just a mattress commercial but I still like it.

I have never been the late night partier (well except college but who wasn't then and maybe a few other times but the statute of limitations is now well past on all my 20 something activities).

I believe, and have for decades, that 9 pm is a good time to go to bed for adults. A friend once accused me of living like a little kid by going to bed so early. My husband believes the same thing - I think mostly due to his military years and maybe because 21:00 looks much later than 9pm.

I have always been an early morning person. Even as a teenager I never slept until noon. Sleeping late would mean getting up at 8. The cat loves this because he likes a 5am breakfast. During the week we have an alarm clock with a back up cat alarm. Sleeping late and getting to work late was never a problem.

Usually I have slept pretty well with growing problems of insomnia over the years. Chemo treatment and stress are definitely insomnia problems. Back pain can make it had to get comfortable and sleep.

But now I no longer have any sleep problem - other than not getting enough. Both rheumatoid and fibromyalgia cause fatigue. In the past few months I have been able to take naps daily if I want, sleep ten hours a night. In the past few weeks I need both hands to count the number of times I have slept in past 8 am. I have also gotten more than 10 hours of sleep on many nights. Yesterday I woke up at 930 am.

Each week I find that by Friday I am exhausted from getting up to go to work three mornings. I can't get enough sleep during the week. By Friday night I need at least 12 hours.

I don't have enough time in my life to sleep so much. I'll have to give something up - like going to doctor appointments. That would give me more time for sleep. Ha. As if.

Its a whole new world out there

So you get an ailment and, in the very 21st century way of doing things, you start a blog. You meet all kinds of people (in person and virtually), get and give support, and learn a lot about your ailment and resources available for you. You start following other blogs, sign up for communities and listservs, you get people to communicate with world wide.

Its amazing how much information and support is out there - its truly a wonderful thing. It can be a full time job to keep up on a single ailment.

But I started behind the curve as I had two ailments - two cancers - thyroid and breast to blog about. I have mostly focused on breast cancer but I have let the thyroid cancer come into play as well.

But now I have more ailments - fibromyalgia and rheumatoid - to cope with and blog about. I have followed more blogs, joined more online communities and listservs, my inbox has its own little folders to help manage the vast quantity of emails I receive - the most popular folders being 'Cancer' and 'Health'. I have a lot more to learn.

I never realized how insulated in the cancer world I was until I read the Rheumatoid Arthritis Guy's blog this morning about more of the best inflammatory arthritis blogs. I like the RA guy - he is a self described superhero blogging his way through chronic pain and debilitating inflammation. I will probably even join the monthly pain support group help locally as I learn more about my new issues.

I digress. Now I have a whole new world to learn about out there - find support, learn about my new ailments, and keep on blogging.

My Attitude Needs an Adjustment

I have been thinking (which we all know is not a good thing) recently and wonder if I have turned into a 'poor me'  person - the bane of all patients. The next step might be hypochondria - which we really do not need.

So  my medical life has been in a downward spiral for some years now. Its now at the point where my doctors have said to me 'you have been through a lot'. Most of my ailments have been ones I have dealt with, tightened my belt and moved on. But this rheumatoid and fibromyalgia stuff seems to be getting to me more than other ailments.

I have met all my personal medical requirements:

1. I can't have an ailment that I can't spell or pronounce. 
2. I have a treatment plan (for RA so far but not yet for fibro as they need to treat one first and then the other so we can tell if its working or not but there is a plan afoot for fibro as well).
3. I have educated myself on both and joined online support groups.
4. I will attend a monthly local chronic pain group.
5. I can joke about it.

But I am not feeling my normal perky self. I went to a party Saturday night hosted by an old friend. By 'old' I mean since junior high. She has had rheumatoid since 2005, which is about when my health started its downward spiral. She very rarely talks about it. It is basically under control. She gives herself injections (something I am not sure I could do) and has been on a variety of medications. She doesn't seem to let it bother her as much as mine bothers me.

Before her party started, we managed to have a few minutes to talk about it. She said it took two years to get a diagnosis because she also had Lyme disease when her RA started. But she now really feels fine.

I decided I am jealous that she is in control of her RA (and still weighs the same that she did in high school). But two years to get it under control? I'm not sure I'm up to that.

But I digress. As I drove home from her party with my husband, I started to think. We left somewhat early because I got tired and was in pain. My friend and her husband were all going strong. I wanted to go home and go to bed.

I spent most of Sunday being lazy because I didn't have the 'oomph' to do much. While being lazy, I decided my attitude needs some adjustment so I can have more fun in my life and be perky again.

Will I always compare fatigue now to cancer treatment fatigue?

Anyone who has gone through chemo can tell you about fatigue where you sit stupidly on the living sofa/arm chair staring blankly at a television screen not remembering a thing you watched. Fatigue where sleeping late turns into an afternoon nap. Being so tired you felt like you were hit by a truck upon waking up in the morning.

Last night I went to a craft fair where I had a table (anyone want to buy a hand knit or crocheted scarf?) that ended at 9pm which is VERY close to my bedtime these days. As I was driving home I thought I was really tired, like chemotherapy tired or end of radiation treatment tired. But I am not in chemo or finishing radiation, I am living the rheumatoid/fibromyalgia life where fatigue is part of the package. How fun (not really).

Then I started thinking again (I know I really shouldn't do this - think that is) and wondered am I forever going to compare my level of fatigue with how I felt during cancer treatment? I mean I used to think I was feeling exhausted and tired like I had skied hard, or climbed a relatively large mountain, or spent the day running around on the beach. Now I just compare it with chemo or radiation fatigue. Well grr.

I think my life needs a better perspective so I can skip thinking about chemo and radiation (I am sure that will be SO easy to do) and think being tired after something fun. And I'll have to take up napping and refine it to an art form.

Exercise and me

As an adult, I have been good at exercise. When I was a child, I was a dedicated athlete and ice skated daily before school, after school, on weekends, in skating shows, and basically a lot. Then I discovered being a teenager is more fun than spending your life at a skating rink and I was less of an athlete but generally active.

Eventually I discovered the benefit of a daily walk and walked my way through cancer, multiple surgeries (benign and malignant), and all sorts of fun. When I turned 40 37 for the fourth time, I joined a gym. Then my back started to hurt and nearly a decade later, I joined a gym for decrepit people. They are familiar with decrepit people and health issues. In fact yesterday when I was there, there were two people on cardio machines while on oxygen.

As part of my expensive (but worth every penny) gym membership, I get a three month evaluation free of charge. Yesterday we talked about how I can exercise with RA and fibro to my best benefit. We went from the 'lets do lots of things to keep in as best shape as we can' to 'lets do a few things to preserve balance, flexibility, and strength without injury or causing more pain'.

Now my work out consists of 45-50 minutes of cardio instead of 40 and maybe 10 exercises at lower weights for 1 set of 25 reps instead of 20 exercises at medium weights for 2 sets of 15 reps.

I tried it yesterday. Last night I was hobbling around. Today I am still hobbling but haven't decided if it is caused by my workout yesterday. Today I am not exercising unless going to the grocery store counts. Pushing around a big grocery card can cause pain. I just won't buy a lot of heavy things.


I will get exercise again tomorrow I think. I have to skip a day between work outs or I end up in bed for a few days. Call me wimpy but call me alive.

Welcome to my two new ailments

As you may have deduced figured out (I hate to use big words too early in the day) I have two new fun ailments to add to my collection. I have both Rheumatoid Arthritis and Fibromyalgia. They nicely round out my previously daignosed ailments but also explain why some of my other ailments never got better and I have had so many pains that were previously blamed on my back or my lack of coordination which causes me to trip and fall and hurt another body part.

While neither of these ailments has the potential to be fatal, like cancer, they are not fun. Rheumatoid is one of those life long things that slowly progresses. The goal is to get it to stop progressing. I have early stage RA which has not yet started to erode my bones in the joints but I have many swollen joints in my hands and feet and elsewhere.

Fibromyalgia can last for months or years or forever. Actually its described as a long term pain problem that can come and go for years. A fibromyalgia flare up can last a few minutes or a few years.

I'm special since I have both fibro and RA. I have to be special. I'm convinced that I could make a lot of money when I die selling my body off to science so they can ooh and ahh at all my ailments. But I digress. I am now trying to get my treatment started for both of these. The basic recommendations for patients with both RA and fibro are:

"The best course of treatment for patients who have both fibromyalgia and rheumatoid arthritis is to first treat the rheumatoid arthritis since this condition commonly is associated with joint deformity and disability. If it is felt that the rheumatoid arthritis is controlled based on joint exam and measures of inflammation such as sedimentation rate (ESR) and C-reactive protein (CRP), but the patient still complains of pain and fatigue - consider fibromyalgia activity. Focus on improving quality of sleep through increased rest and aerobic exercise. Rule out sleep apnea if clinically significant. Consider medications used for fibromyalgia including tricyclic antidepressants, selective serotonin reuptake inhibitors (SSRI), and gabanergic medications like Neurontin (gabapentin) or Lyrica (pregabalin)."

My rhuematologist started me on treatment for my RA - but I was allergic to both medications. I'll see how  I feel by the end of the week and call her back so she can start me  on Methotrexate. These medications can take months to start working - oh, joy! In the meantime, my back pain doctor who will be the primary doctor to treat my fibro, doesn't want o put me on anything like Lyrica for now. He wants my RA to get under control - one new set of drugs at a time. But he did increase the dose of my pain patch which I'll start next week.

In the meantime, I wake up in the middle of the night - sleeplessness is a symptom of fibro but also can be caused by waking up in pain. I have my little bottle of pain pills that I carry around like it is a life support system.  I am also learning to cope with the fatigue. Saturday afternoon at 4pm all of a sudden I got too tired to watch TV. When you are too tired to watch a Lifetime movie, that means you are really wiped out.

I have been perfecting my ability to be lazy which isn't as hard as you may think. The cat is overjoyed with my sedentary life style as it means he can sleep on or next to me more frequently. But I still go to the gym three days a week and have gotten advice on adapting my work out until the medications kick in - in a few months. That means I may be perfecting other skills - whininess, crabbiness, crankiness.

Is it time to rename my blog?

When I first started my blog it was called 'Caroline's Cancer Blog' for a very brief period. Then I settled down with 'Caroline's Breast Cancer Blog' because it was about coping with breast cancer. Now more than five years later, my breast cancer seems to be cooperating and not stressing me out (as much) as it did before.

But now I have all sorts of other medical stressors:

• Thyroid cancer mysteries. What the hell is going on in my neck? We keep repeating ultrasounds and get conflicting reports - bigger, smaller, same size.
• Back pain. Degenerating disks to start with and living on pain meds. 
• Fibromyalgia. This isn't fun. I need to go back to my back pain doctor.

And there's more that I can't think of right now because I have chemo brain (or maybe its fibro fog). I'm tired, in pain, and a touch cranky at times. Also:

• The spell check on my computer includes oncologist, endocrinologist, rheumatologist, and multiple medications. 
• I have a special directory on my cell phone of all my doctor's contact information and have their secretaries' names memorized.
• I see my oncologists less than I see some of my other doctors.
• I feel like I know the pharmacists at the local Walgreen's. 
• The nurses in the interventional pain center where they do injections recognize me.
• I can't fit all my prescriptions on my bedside table and keep them on the shelf in my closet.
• My primary care doctor is happy when she doesn't see me more than every few months.

So my life isn't just about breast cancer any more and my blog isn't just about breast cancer either. I have lots of opinions on lots of things. But I'm not sure I want to rename my blog because breast cancer was one of the first big things that have happened to me in the last few years. It still exists in my life - a cancer diagnosis never really 'slips your mind'. With two cancer diagnoses, when I don't stress about my other health issues I can always stress about them.

The medical roller coaster goes round and round

Yesterday I went to see a new doctor, Dr. P., to see if I have rheumatoid arthritis due to all my aches and pains that never seem to go away. I have a family history of RA from my mother and maternal grandfather. I was referred there by my pain management doctor, Dr. G.

When I got there Dr P said that Dr G had put in his notes that I had myofascial pain/fibromyalgia. I said he had never mentioned fibromyalgia to me at all. At first Dr P said she would clarify that with Dr G and that it would be treated through the pain management department as I already am. By the end of the appointment Dr P said that I probably do have fibromyalgia because I have all the signs after she pushed on all sorts of places that caused pain.

Dr P was also concerned that, because of my family history and symptoms, I could have other ailments. A family history of RA does not mean I will get RA but that I am probably more prone to getting other autoimmune ailments. Dr P also said that because of my history and symptoms this wasn't going to be a one time visit but that I would get all sorts of fun tests. So I left a urine sample, went for blood word, and hand, wrist and ankle x-rays. If everything comes back negative, she will follow up with me in six months. If anything comes back positive, I will see her in three weeks for more fun and games.

On the plus side, its not cancer. On the negative side, these things don't ever really go away. But I really am a healthy person - if I keep saying this, maybe it will come true.