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.

I did get the memo but it didn't help

Eat oily fish, high in Omega-3, to reduce risk of rheumatoid arthritis. That was a memo. I got it. Wthan others. e eat a fair amount of fish - especially since we live within 10 miles of the fish filled Atlantic Ocean. Now I have rheumatoid. Now granted it is in my family but I did follow directions.

What this proves is that not all research is a magic pill. I mean you eat whatever for whatever its benefit is supposed to be so you can reduce your risk of some ailment. There are two problems with these theories:

1. Some people think that they cannot get the ailment because they did what they were told. They didn't smoke, so they won't get lung cancer. Well you can. You are only reducing your risk.
2. While they represent advances they are not cures. They are more like suggested life style changes. 

 If asked, I do live a relatively healthy lifestyle - I eat my fruits and vegetables, I don't skip meals, I get exercise, blah, blah, blah. And I am probably one of the least healthy people around. So just because I got the memos, doesn't mean they helped.

Maybe I'll be cranky today.... My back hurts. Some days I am just more cynical than others.

Winter weather in summer

Part of having RA and fibromyalgia is adapting to cold weather. Why am I blogging about this in July? Because here in Boston in July its a tropical 66 degrees. Yesterday's high was 69 with heavy rain. Today it might hit that same temperature again with more rain, mist, and clouds today.

How does this feel? Achy, sore, creaky, tired. Its July, its summertime. I'm supposed to be feeling better because its a nicer time of year. But between being off methotrexate and the 'tropical' weather, I am borderline cranky.

It is complicated

When diagnosed with a new ailment, I try to educate myself on what it is, what to expect, and how it works as much as I can. I don't go to medical school or anything but I do a lot of reading,  listening and asking questions.

I think I feel more comfortable with ailments when I understand them and can comprehend how they are affecting my body and my well being. Its helpful to me to know what is common vs what is unexpected and requires further attention.

At my RA diagnosis, I thought I knew a fair amount about it because my mother has had it for decades. But apparently I did not. It has been a learning curve. I finally thought, 8 months after diagnosis, that I was getting some where.

Then yesterday a friend sent me a link to a series of two articles in the New York Times which are questions answered by a rheumatologist on RA and its treatment. Then I found out how much more I didn't know. I read the comments at the end and found there is still even more I need to know about.

You can call me slow but I probably have decades where I can continue to learn about it even more.

If you want to educate your self on RA, here are parts one and two.

I'm learning

You may call me slow sometimes but I am learning. Some medications when you start taking them  have a relatively quick impact on you. You take a tylenol and your fever usually goes down and pain subsides within an hour. Antibiotics often make you feel better with in 24-48  hours.

Rheumatoid medications are different. They can take months, as in 3-6 months.

When I was diagnosed with RA last fall, I was immediately put on prednisone and plaquenile and we quickly learned I was allergic to both. I was then switched to oral Methotrexate (MTX). The dose was upped to the maximum in January. I started to feel a little  better, I thought. But not better enough so I was switched to injection MTX in April.

I have felt some improvement but could not be completely sure. My back pain was making it difficult to 'feel better' because I was always in pain from something.

After I had my back treatment at the end of June, I thought my back was better but immediately got a double ear infection and was too sick to care about body aches and pains as I lay on the couch and watched Lifetime movies and bad reality TV.

Since I was put on antibiotics for two weeks, I had to go off my MTX. Its been three weeks since my last treatment.

Over the past week I have been feeling more and more tired with more and more aches and pains. Yesterday I was ready for a nap at 9am and my wrists were killing me.

Last night I started doing a little research to find out from Dr Google how soon after finishing antibiotics is it safe to restart MTX. After reading a lot of answers online I realized two things:

1. I was feeling awful because my RA has been acting up because I haven't been taking my MTX.
2. Methotrexate was working to help my RA.

Tonight I will go back on MTX and hope I start feeling better soon. I hope it doesn't take months to feel the effects again.

My rheumatologist told me if you have been on MTX for ye ars and go off it fo a few weeks for antibiotics, its not that big a deal because your blood levels are high enough. But since I have only been on it since April,  I would probably feel the lack of it. She was right.

I am learning, slowly. I will suck it up, wear my wrist splint, and take my pain meds.

Okay I learned a few things

I have had this stupid evil cold since Friday afternoon, June 28. It came to me courtesy of my husband. This is a normal event, one family member gets exposed to germs and brings them home to share with other family members.

My theory on colds has always been to take good care of myself and basically ignore them unless I become fairly sick. Rarely does a cold send me to bed for more than a couple of extra naps. I have never had a problem with this theory. Ignorance keeps the colds away.

This worked for decades.

Not any more.

In  the past 24 hours I have learned:
- when you start to feel sick, stop RA drugs
- when you start to feel sick, call your PCP, not after a week or 10 days as I normally would
- colds more easily turn into pneumonia when you have RA both due to the disease and due to the medication.

Today I am home in bed sick again/still whatever. If you are keeping count this is day 14. Normal colds evolve and slowly get better. Evil RA colds, stick around and get worse. My sore throat is gone but my cough is not and my ears are clogged.

I am on antibiotics that I started yesterday morning and if I don't feel better by Saturday I am supposed to go to the walk in clinic. Next Tuesday I see my new rheumatologist and will probably learn more about the common cold with rheumatoid.

The only good side to all this is that the scale seems to be going in the right direction even though I have been eating ice cream every day.

Rheumatoid treatment options

When I was diagnosed with rheumatoid last fall, I was already fairly aware of treatment options as my mother has had RA since 1989. The current theory for treatment is to hit it fast and early to slow progression and joint deformities.

I was immediately put on plaquenile and prednisone. Plaquenile is an old drug from the 1930s or so and has successfully been proven to treat RA but it is slow working - months to have an effect - so usually prednisone is given for a brief period of time to get the swelling and  pain down faster. That was bad news for me because I turned out to be allergic to both.

I was then put on methotrexate orally and after three months, was upped to the maximum oral dose but still not much progress against RA. Then after another three months, I was switched to injectable methotrexate which is not my favorite thing. This seems to be causing a few problems in reacting to the injection and I have been concerned about my options.

I go to my new rheumatologist in July to talk options. I have limited options because all those lovely new biologic drugs like Enbrel and Humira that are advertised on TV are not for me because they don't like giving them to people who have had cancer. (There's a choice - living in pain or cancer.) There is one new option that has only been out for a short time that might be a possibility but it is very expensive.

So while I have been over thinking this whole thing and spending all too much time consulting with the evil Dr. Google I just learned about a new study that says that the older drugs - methotrexate, plaquenile and another drug that I have not been put on are proving just as effective as the new and expensive ones that I can't take. And they cost a lot left. The article also notes that between 20-40% of patients do not react to methotrexate. So maybe I am not alone.

Now I am going to stop over thinking this, step away from Dr. Google and wait until I see my rheumatologist next month.

The Best New Doctor Reaction Yet

He laughed.

I went to see a physicians assistant in the rheumatology department yesterday about the bump on my arm (not on a log). He was a very nice man and spent some time talking to me.

He said what I have is probably a ganglion cyst and he could stick a needle in it and drain it but it might come back. I said lymphedema arm. He said 'oops, no needle'. I said when I move my thumb around it makes it hurt more, he said I could give you a thumb splint but that would make your arm swell up.

So we left it that I will monitor admire it, and if it does become problematic, I would be referred to a surgeon to see if there was anything else that could be done. On the other hand, sometimes they go away on their own, or disappear and then reappear. But its not arthritis and its not cancer so what they hell, I can stick with it.

Then he asked me how I was doing with the RA. I told him about being allergic to both plaquenil and prednisone. Prednisone is often given to RA patients to give the other treatments a boost to get them started or during a flare to help get it under control. Not for me.

I also said that I can't take the organics like Humira, Enbrel, etc because of my cancer history. And I'm allergic to benadryl and the cillins as well.

He laughed and said 'oh you are a great patient to treat!'. I have multiple ailments, can't take many regular treatments, and have allergies that pop up all the time.

Yes I could see the humor in it. But at least I didn't have to scrape a new doctor off the floor for once upon hearing all my medical history..

I was unenlightened

I broke down and called my rheumatologist's office yesterday about the bump on my arm (not on a log). The problem was who to talk to.

The nurse practitioner I saw a couple of weeks ago is on vacation.

The rheumatologist I saw first left and I have not yet met with my new rheumatologist

I ended up talking to the physician's assistant who has never met me. We will meet on Thursday afternoon.

He did tell me it sounds like a rheumatoid nodule - I said that I am rheumatoid factor negative and statistics say I should not be getting nodules. But I did switch to injectable methotrexate which could be what caused it so I might need to switch medications. But with my medical history I can't take a lot of them.

He did also say it could be a ganglion cyst which could be drained or removed. Oh but since its my lymphedema arm there may not be any treatment options for me.

Which means I  may be SOL. Crap.

I am focusing on this because I am ignoring next week's assorted tests that I would prefer not to think about.

If its not one thing, its another

Friday I noticed a little bump on the side of my wrist that appears to be on the end of one of the bones in my lower arm. It is solid and hurts. I had noticed some previous pain in the area but since I always have pain somewhere, I didn't really think about it.

Its about the size of a pea and might have gotten a little bigger this weekend. I have no idea what it is. I did contemplate that evil cancer word for a few moments. Dr Google told me it would be very unlikely to be any kind of cancer.

I have often been asked by my doctors if when I had my last flare and my response is I don't know because I am not sure if I have had one or not. I think that doctors assume that once you are diagnosed with RA that you will have flares immediately. But I never really knew what a flare was. Apparently its lots of aches and pains, head aches and all sorts of fun. I feel like that a lot of the time.

Yesterday afternoon, I went online and asked a friend with RA about my little lump. She said it sounds like an RA nodule. I thought nodules didn't hurt. She said hers did when they first appeared. She said they come and go for her. I am (not) overjoyed.

I did a little online research (because Dr Google always knows more) and found out that injectable methotrexate has the dubious side effect of causing more RA nodules. So two days after my first injection, I get a nodule. I will call my rheumatologist's office this morning and ask if this is something that I should be concerned about.

The problem is I can't take most of the other organic injectables because of my medical history (blah, blah, blah). So am I stuck with more RA nodules as a result? Crap. But its not cancer so I will think some positive thoughts and give evil looks to the little bump.

This has been a bad week

This has not been a good week for me and a lot of other people. First off all, the marathon bombing on Monday turned lives upside down. And it seems to be the only thing on network television these days. All my regular shows I record so I don't have to stay up late, have been superseded by more news coverage showing the same things over and over again.

I have a very busy schedule this week. I had a meeting after work Tuesday that went relatively well. I met with my boss at the job I am leaving to talk about transition and was pleasantly surprised to find out they have two replacements for me - which is good for them and makes it easier for me to train people instead of leaving lots of notes.

Yesterday I went to work where there has been a fair amount of stress going on as well. Also, I was out last week so we can just say I have piles of things to do. Then I had an appointment with the nurse practitioner in rheumatology. I had hoped for a quick appointment and a quick trip to the gym before getting my hair cut.

Instead I had a 45 minute wait to see the nurse practitioner - stuck in a waiting room with a giant flat screen tv focused on the bombings and then the federal court house had a scare and was evacuated so all the newscasters could do was conjecture about what was going on and patients and medical staff, kept asking questions. I could not ignore it.

Finally I met with the nurse practitioner and we talked about my tiny medical history before the bad news started. Methatrexate is not working well for me. I can't take the biologics that are TNFs - tumor necrosing factors. This means I will never be able to Humira, Enbrel, and that whole class of drugs.

There are still options available for me that are not the big names but they all involve needles. I have a real problem with needles. My husband said he would help. We will go meet with a nurse and get instructions at some point. (And then he told me last night he didn't really like needles either - I don't think he has a choice in this because I am not sure I can give myself injections.) But that will be next week and I am not worrying about it today.

The one advantage to injecting methotrexate instead of taking it orally is that it is easier on your digestive system. This is good because last night after taking my pills, including my weekly dose of methotrexate, my stomach turned into a giant knot and caused a lot of pain. So I ended my crappy day in the bathroom in a lot of pain.

I just have to get through today and then tomorrow I am going to play hooky with a friend. I need a day off.

I got promoted

I now have enough ailments, or an important one, that allowed my insurance company to nominate me to get extra personal care. AccordantCare, which is part of CVS somehow, provides an information library and personal contact with a nurse who helps with dealing with doctors, treatment plans, and just some one to call and talk to about health issues.

Due to my RA diagnosis and my insurance company's arrangement with them, I get this extra care. I think it could be helpful. In addition to the fact that my RA is still not under control, my rheumatologist is leaving and I am getting a new one, and its a relatively new diagnosis, I think I could use some help.

I feel sorry for the nurse who is going to call me thinking I just have RA. When I get done with her at the first call, going through my ailments, my prescriptions (I was in the category of more than 9 daily), and other issues, I think they might be a tiny bit overwhelmed. How quickly will these conversations turn into 'with your medical history, we need to be sure' conversations? (I hate that part.) I am sure that s/he will want to focus on RA which is fine but there is more to my health that just it.

I have a call scheduled with the nurse for a week from Monday so I'll wait and see how it goes. In the meantime, I will take my creaky body to the gym to see if I can get moving today.

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.

Big words to be translated

I find inspiration for blog posts everywhere. I keep open tabs  in my browser holding stories for me to write about. Sometimes I get a little backlog - like right now. I have a backlog and the problem or the source of the back log is ... drum roll.... big words. I don't feel like deciphering them and figuring out if they have content to be worthy of a blog post.

I have a Business wire story on the the first test to diagnose fibromyalgia:

• "First Test to Objectively Diagnose Fibromyalgia Now Available - New Peer-Reviewed Research Identifies Diagnostic Biomarkers for Fibromyalgia SANTA MONICA, Calif.--(BUSINESS WIRE)--A recent peer-reviewed study, published in BMC Clinical Pathology,^[1] reveals a medical breakthrough discovering multiple biomarkers based upon highly sensitive and reproducible medical investigations. Conducted by the University of Illinois College of Medicine at Chicago (UIC) and EpicGenetics, a privately-held biomedical company, the research has led to the development of The FM/a^® Test (www.thefmtest.com), the first test to objectively diagnose fibromyalgia."
  

The important thing here is that there never has been a real test. But look at those big words!

• 'Drug holidays' beat cancer drug resistance in mice -
  Introducing medication-free spells to some cancer treatments may keep patients alive for longer, studies in mice with skin cancer suggest.
  The animals had melanoma, which can rapidly become resistant to treatments.
  However, a study in the journal Nature showed tumours also became dependent on the drug to survive. Withdrawing treatment caused tumours to shrink.

I would be happy to have a drug holiday every once in a while. I mean am I building up a resistance to some of the medications I am on? Or do the days count when I just forget my pills (oops)? And then the article goes on with lots of big words!

• Skin cancer 'able to fight off body's immune system'
  A deadly form of skin cancer is able to fend off the body's immune system, UK researchers have found.
  Analysis of tumour and blood samples shows that melanoma knocks out the body's best immune defence.
  Potential test could work out which patients are likely to respond to treatment, the Journal of Clinical Investigation reports.
  Cancer Research UK said the body's response was a "complex puzzle".

So they discover treatment and then they find out it doesn't work for everyone.  Great. More research is needed, don't you think?

• Key Enzyme Missing from Triple-negative breast cancer
  Key Enzyme Missing from Aggressive Form of Breast Cancer, Groundbreaking Study Shows
  Feb. 28, 2013 — A groundbreaking new study led by the University of Kentucky Markey Cancer Center's Dr. Peter Zhou found that triple-negative breast cancer cells are missing a key enzyme that other cancer cells contain -- providing insight into potential therapeutic targets to treat the aggressive cancer. Zhou's study is unique in that his lab is the only one in the country to specifically study the metabolic process of triple-negative breast cancer cells.
  Normally, all cells -- including cancerous cells -- use glucose to initiate the process of making Adenosine-5'-triphosphate (ATP) for fuel to carry out essential functions. This process, called glycolysis, leads to other processes that use oxygen to make higher quantities of ATP -- but solid tumor cells, which have little access to oxygen, are forced to rely almost exclusively on aerobic glycolysis for survival.

 The next paragraph is a little deep:

• Zhou's study, published in Cancer Cell, showed that the powerful transcription factor complex Snail-G9a-Dnmt1 is over-expressed in triple-negative breast cancer, inhibiting the enzyme 1,6-bisphosphate (FBP1). The loss of this enzyme shuts down the glucose anabolic pathway and promotes the glucose catabolic pathway, leading to a large amount of glucose entering the tumor cells and thus "feeding" the aggressive cancer. This metabolic switch empowers the triple-negative breast cancer cells to suck more glucose from the body, increasing macromolecule biosynthesis in tumor cells and maintaining ATP production despite a dearth of nutrients and an oxygen-free environment.

Way too many big words! But behind it is some very interesting news.

• Early rheumatoid arthritis and resolving fibroblasts segregate according to Dickkopf related protein 1 expression
  Dickkopf related protein 1 (DKK1) has been proposed as the master regulator of joint remodelling. This Wnt signalling pathway inhibitor is involved in osteoblast growth and differentiation. In rheumatoid arthritis, increased DKK1 plasma levels correlate with inflammation and bone erosions. Furthermore, patients with rheumatoid arthritis who carry genetic variants in the DKK1 gene have higher serum DKK1 levels and more progressive joint destruction, suggesting a fundamental role for DKK1 in rheumatoid arthritis. In the diseased joint, synovial fibroblasts are key mediators of bone and cartilage destruction via secretion of matrix metalloproteinases and regulation of monocyte to osteoclast differentiation. In this study we analysed whether DKK1 secretion might contribute to this effect. We hypothesised that synovial fibroblasts from patients with early rheumatoid arthritis would be characterised by high DKK1 expression compared with those from patients with resolving arthritis.

Too many big words but lots of great news here. I am leaving these articles to you, the readers, to decipher as I am taking a break from big words these days. Chemobrain/fibrofog or just plain pain and fatigue are allowing me to do this. And just plain old lack of inspiration.

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?

Happy RA Awareness day, a day late

Yesterday was RA Awareness Day, the first one, so we went out to dinner with my parents because my mother wanted to celebrate. She has had RA for over 20 years. We didn't know if we were supposed to wear a special color or not.

It was also Ground Hog Day and Punxatawney Phil did not see his shadow. This lead to some discussion. Does it mean that winter is over as we know it for the year? Or does it mean it will fade away? Or do we really care because he is not accurate anyway?

RA Awareness Day did make me aware that I need to learn more about my new ailments. There is a lot I don't understand. I was attempting to reading this announcement on an important new development in the diagnosis of RA and it reinforced the thought I really do not know that much about it. Its about antibodies in carbamylated proteins (which makes me think of caramelized onions) if you really need to know.

My goal now, or another one of my goals, is to learn more about my new ailments before the next Rheumatoid Awareness Day. I have a year. There is hope.

I 'get' another day

We all know about Pinktober for breast cancer awareness. Thyroid cancer awareness month is September. Now I 'get' another day. February 2, 2013 is the first annual (I love that term - 'first annual') Rheumatoid Arthritis Awareness Day. There are more awareness days/weeks/months that I am sure I have other days I dont know about. Here is a list of all of them so you can find out your days.

"Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding."

Rheumatoid Awareness day has competition as it is also Groundhog Day. Maybe all of the RA people can crawl over to visit Punxatawney Phil.

"February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. "Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow," says Kelly Young , founder of the RPF. "It's impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.""

Well I will put a note on my calendar and remember to wear a special outfit that day. Its a Saturday, maybe we will go out to dinner. Heck, maybe we could have a party.

Citation: Disabled World News (2013-01-23) - Establishment of Rheumatoid Awareness day of recognition to be held each year on February 2: http://www.disabled-world.com/disability/awareness/ra-day.php#ixzz2ItF25Q00

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.

Rules for my doctors

Somewhere in the depths of my blog (if you blog for over five years I think it has depths) I have written about this before that I have rules for my doctors.

Yesterday I saw my  rheumatologist, Dr. P. She was recommended to me by Dr G, my pain management doctor. It is my three month follow up (which will be the story of the rest of my life with RA) to see how treatment is progressing. I have been a bit stressed about this RA stuff and came prepared with list of questions to help me destress and further my coping with this new ailment.

We discussed RA and fibromyalgia and pain management and what I need to cover with Dr G next week. She was concerned about my fatigue levels and wanted to run some more blood tests. I was surprised to find out which pains are not RA and which are probably fibro - tips of fingers are fibro not RA. Foot pain is probably fibro. Hip pain on the outer hip is probably fibro. I have lots of notes to talk to Dr G about.

Dr P answered all my questions. She is happy with the progress of treatment but says its still active so we need to up my dose of methatrexate to get it under control.

She asked me my opinion of self injection. I said my husband (the saint) had agreed to give me my injections if we get to that. I was very pleased to hear there are non injection forms of medications available. And she said she would make a note in my file about me and needles.

We did discuss long term prognosis and she assured me that with new treatments the goal is to get the disease into remission so that I can live pain free for life and not end up with crippling disfigurement. This is the current treatment expectation. This made me MUCH happier.

I was beginning to think that this could be manageable and I could see working with her in the long term. I was feeling more relaxed about this whole thing. She dropped her bombshell. She is leaving the hospital at the end of March. WHAT!!!!!!!!!!!!!

That is not allowed in the rules for my doctors. Doctors that I like I never allowed to leave or retire. One of the reasons I liked her so much is she is  younger than me so chances were that she would be with me for decades. Dr G is much older and I hope he will never retire.

Its completely understandable as she has two small children and traffic in the evenings can make her homeward commute to take 90 minutes.

The hospital expects to hire someone in the spring. Normally I would alternate a visit with nurse practitioners with the doctor every three months. The plan is I will see her nurse practitioner in three months. Then three months after that I will see the new doctor.

But I have a plan. When I see Dr G, who sent me to Dr P in the first place, I will ask him his opinion of who to see in rheumatology or if I should wait to see who the new hire is. I can be sneaky when my health is on the line - especially when my doctor breaks the rules.