Dealing with Chronic Disease Can Get Old

This post is partly crowd-sourced from my online support group that's been together through thick and thin, even losing a few members from complications as we have talked over the years. Speaking for myself, writing this blog and choosing the pictures my old friends shared in the past made me feel decidedly better today.

Here's what they say:

Tricks seem to imply that you are fooling yourself or your body, and I just don't see that as a working strategy. With the brain in charge - it's a losing battle. So, the tips are better then the tricks.

I think eating ice cream would be appropriate.

We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at last one serving of a fruit or vegetable and usually more with every meal.

Aging –you’re not old - I have read that 65 to 75 is "Young" old, 75 to 85 is "Old" and 85 plus years is "Very" old.

The above comments are from Dolly's mom.

We're not rewarding to our doctors.  When we start to have rheumatoid disease longer and things start to pile up....there isn't much that can be done. One of the reasons I haven't gone to another rheumy is that 30 plus years with r/a is a long time.  It’s all progressive.

I feel invisible a lot of the time.  I think you don’t get much attention if you're solo.

From Henry's foster mom

Some of us are getting a little tired. How many rounds is this fight? I am so tired of fighting for things now. I really feel like just giving in.

From our member in New Jersey

Not every patient is interested in their health care. I think more should be available to educate people on the necessity of taking responsibility for their own health. "No one cares more about your health than you do" is what I would tell them.

So on one hand you have the world where the doctor is seen as "God" and all knowing, and on the other, many people who have a variety of expectations of their doctor, including wanting to be part of the treatment process.

Then there is the minority who want to be really involved including having a voice in decisions that affect the health care system, and the policies that govern it. 

Even though some see them as "Not the unheard voices" they are still essential to pave the way for more patients and caregivers to take on a larger role. 

So I'd like to thank all the people who go above and beyond their expected roles, for doing the sometimes exhilarating and often thankless job of being patient and caregiver advisors.

To all the ants toiling away in models of collaboration

This blog is part of  RD Blog Week. See more here.

"I Had a Nightmare Dream"

Here's a conversation about pain between two good friends who gave me permission to use their words, and whose names are changed.

"I had a nightmare type dream where I was in a car with others and I lost control on a curve.  I regained control quite quickly and no one was hurt.  Now that's quite a telling dream, huh?"

That's what one of my support group friends reported when she woke up in the morning with her feet and lower legs hurting like the dickens - she said they were "on fire". So she took her pain med and looked forward to feeling better because she had a busy day planned...

With a forecast for strong thunderstorms, a high of 90 and very high humidity she blamed some of it on the weather. She said "I wish my doc would let me take more medication on the bad days but he is worried about the changes in the brain that opioids make."

"Oh well...when I hurt enough I guess I will complain louder."

Gail replied "I do wish the doctor would listen to what you’re saying about the pain Robin. I’d say, what about what the constant pain does to the brain and how you feel in yourself?

Gail went on to comment that she had one of those days yesterday where the pain meds just didn’t cut it; by the afternoon she felt awful, stiff and painful and the fatigue hit super hard. I held off but relented with extra pain meds by 6pm and my evening was much better. Does anyone else have days like that where you’re literally counting the minutes to the next pain med dose?" 

Robin told us "Out of the 24 hours I get relief for approximately 8 if you consider how long it takes for the med to reach all the brain sensors for pain and then the time it begins to start back to "normal".  I was counting the hours yesterday to when I could take the second. 

Exactly Robin, replied Gail. Which pain med are you on? I’m on Di-hydrocodeine and that takes 50-60 minutes to metabolize in the liver. I then get between 4-6 hours before they wear off. I do know what you mean too about how fascinating it is, the way one day your elbow for example can be in absolute agony and then next day, nothing! Sometimes hour to hour is like that, it’s a crazy disease for sure

I am on hydromorphone 2mgs.  I feel better today. So I was able to sleep from 7-9 but it wasn't refreshing sleep.  I'm not sure I will ever have that again. 

I know my friends use a variety of methods to stay mobile, to distract themselves from the pain socializing and doing creative activities and yet this is not always enough. 

Another member of our group takes a very low dose pill usually only once a day, and yet despite the fact that she is stable and also almost 80 she is forced to make an extra visit to the doctor every month to get a new prescription. he feels he is doing her a favour because she is his only patient on any opiod at all and if he did not do this she would be forced to go to a pain clinic.

Things are getting very difficult for patients with chronic pain who just want to be able to function for at least part of the day. Every drug we take has an inherent risk of course. If I could not take Nsaids I don't know what I would use as an alternative, and yet Nsaids commonly cause cardiovascular and stomach problems, especially as you age. The alternative medications for pain are all risky and we are being warned about almost every painkiller.

It seems that patients are more and more expected to find their own remedies and many of us are very skilled in using every strategy we find already. Where do we go from here?

I actually saw an article where orthopedic surgeons were discussing cutting back on strong painkillers. I will admit I could do with less than a week's worth usually, but don't even try t talk to me about mindfullness two days after one of my joints has been fused or reconstructed.

This post is part of RA Blog Week. More blogs on this topic can be found here.

Insiders View of a Support Group

This post is composed of comments from members of a private support group I have been a member of since before Google was a search engine. It's valuable to have support, and it's great to be able to increase your social support network online. The hardest part is finding a group of people who are compatible.

Julie's comment

I found this Group by accident.  I was searching for something else and a little box came up on the right hand side of the page advertising the RA Yahoo Group.  I read a little about it and decided to join. I lingered around for awhile reading the messages and then started sending messages and questions.

I am not one to join any kind of support group, but this group was so interesting to me.  It was nice to find others that suffered with the same auto-immune disease and who really understood everything.  Each of you have contributed to my education of this disease and just listened to my whining - giving good advice.  Others think they understand this disease, but they really don't. The only people who really understand are people who also have an auto-immune disease.

Thanks to each of you who have contributed.  Everyone on this group is so very nice and I thoroughly enjoy knowing you online.  I just wish we could all meet one another in person.  This group is also a special place for me.  Thanks for letting me be a part of this group and thanks again to Penny and Annette for overseeing everything.  And - Thanks to all of the members for being so supportive - not only about RA - but, about everything.  
Penny, the group "owner"

I’m glad I invested in this group too, it’s such a special place for me and you all are like family. I do enjoy our time together each day so much and as you said I’ve also learned a huge amount. I guess there are many things that the doctors either don’t have the time to explain or many things that they simply have no idea about because they don’t live it. And to think when I first joined here, I really didn’t think I needed a support group. How wrong can you be?!  

Roze

I am happy you found this group too.  I have learned so much from you and always appreciate your sharing.  I think our group is unique.
Maggie

I have to say I love this group a lot. I am not in any other group. Don't need to be as everyone here is just the best and I have learned a lot from this group.

I would be lost without all the support I get from everyone here. I class them as my second family  xx.uk 

Grammy 
I'm with you Maggie.   This is my only group as well.   Just feel like I'm always behind lately since shuffling kids more often

Our Doctors
Roze
My idea was to make a list of things that docs could share with their patients that we had to learn from each other, and/or things that would make our lives a little easier without having to go through trial and error.

Penny
We were talking about the things that we’ve learnt from being in this group, versus what our doctors have taught us. I said to Roze I wasn’t sure if the reason for the lack of info from the doctors was due to lack of time, or lack of living with RA themselves.
Polly

I think they know what the "words" mean but they don't know what the "experience" is.  For example, I don't think my pulmonologist (as good as he is) really appreciates what it is like for me to have the lung conditions and RA running around my body and the Fibromyalgia kicking in some pain here and some pain there. They seem to live out of their textbooks and we live out of our life's experience.

Benefits
Maggie

I discovered from all of you, for example, that I was not lazy.  In the beginning, because so many treat you like if you'd just do a little exercise you would be all well again, and you all taught me that my experience was real and you validated that.  I think validation is the best medicine. 

Grover

Penny

Me too Maggie and I’m not lazy either. I do have a group of girlfriends online, we all met in a chatting mums group when I first went online about 15 yrs ago, and many of us have now met in real life when we had a meet up in Dublin. We trust each other implicitly like a group of sisters and have seen each other through a myriad of trials and tribulations and through a ‘lot’ of laughs. They are like family and so is everyone in this group to me.

Maggie

Like you I don't tell my husband half of the things I worry about. He has enough on his plate.
Penny

That’s a good valid point, sharing things here takes some of the burden off our partners I’m sure of that. 
Roze
That is a considerable benefit to not have to share with husbands when you can share with us.  Good point Julie

Penny 

Well I have one idea right away Annette, and that was thanks to you. You mentioned the silver ring splint company to us, and that led onto me not only getting my own splints made, but in being referred to an OT, something my rheumy (not one of the ones I’ve had over the years), had ever mentioned despite me already having finger deformities. These things should be discussed early on in my opinion and not after the damage has already been done. Prevention is always better than cure

Silver ring splint from Digisplint.com above and on my finger at left




Red

Having support is a good thing... I knew I needed it and feel blessed I have all of you here... Even if I don't post as often as I should...

Differences Between Family and Support Group

Today I went to a conference called Health Quality Transformation 2014. It's great to take part in this kind of learning experience, and this is the biggest conference I have ever attended. 

There were 13 break out sessions held in the morning and afternoon and all attendees were able to chose two. Luckily for all they will be appearing on the website of Health Quality Ontario in the next few weeks. If I deduct time for the two I attended that will give me 12 hours of video to watch. It's a sign of real openness. We were also given a copy of the yearly report on how our health system is performing.

Three of us who were patients got together at the end and came up with two ideas. One was suggesting that a patient be added to the planning committee. None of us knew whether this had happened this year but it never hurts to suggest, and we had all felt confident because of our positive reception at this year's event.

The other suggestion we would want to embed with them was that the social support area that many patients experience positively should be explored. We attended the more patient oriented sessions and that seemed to be a topic that did not come up. I was in one that mentioned self-management as an important area in a pilot project in the north, but it was not mentioned specifically.

We have all seen how valuable it can be to have support and advice from peers and others who have similar problems. Of course family and friends play a part, but you just can't replace the helpful advice you get from others who have had similar experiences.

This is a "real" support group, not a virtual one of the type that I mean to depict

Here are some words from Julie that illustrate the difference.
She saw this advice on WebMD.com as part of an article.

They advised: "Explain what RA is like. Giving people the basics on RA is just the first part. More important, explain what it's like for you. You may look the same as always, so people may have no idea what you're going through. Be specific. Describe what morning stiffness feels like. Talk about daily fatigue. Really try to get across how it affects you -- what it feels like when you do certain tasks or what is really hard to do."

She has a large and supportive family and here's her opinion about this advice.

"Do you really think that your family would sit down and listen to you describing how RA feels and remember what you said and be able to identify with your problems?  I don't!  The members on this RA support group do understand and listen because they are going through the same thing.

Even though my family is fully aware of the fact that I have RA and are very helpful and kind to me, I don't think they would want me to recite everything about "how it feels" to them.

Most people think if you Look Okay - then you are Okay.

What do you think?"

Myself, I think Julie has a way with words and I always enjoy her comments. She has also been a big help as I work towards doing a post every day for a whole month. This is now Day 20, so I am 2/3 of the way there.  Yay!

Validation and Online Communities

I have read many blog posts and consistently hear stories about patients who are not believed when they report symptoms. From doctors to family to strangers, people with an invisible illness hear comments like "It couldn't possibly be that bad" and "Why are you using your mother's handicapped placard?"

For a sample of comments by doctors look at the end of this blogpost by Kelly Young of @RAWarrior. These comments made by doctors at the conference are not likely to be surprising to patients with inflammatory arthritis, but if we have not experienced this we have heard reports from other patients.

Just this weekend a friend said she wanted to see a blog post about the type of experience she had during a appointment during the week. Her main symptom was a serious and recent lack of energy. After she described her symptoms the doctor said "Joanne, you've had inflammatory arthritis for 30 years. Your body is getting tired of fighting." Knowing her own body as well as she does that response was not good enough but what can she do?

Tough as it is to get good treatment from doctors who don't believe you, imagine your family and friends echoing those sentiments. Here are some quotes from online friends...

"People don't think that you have a chronic, painful, fatiguing disease if you don't look too bad and they expect too much from you.  Even my own family wants me to be like "before" though they all know what I have been through in the preceding years. Their "forgetting" is selective depending on what they want from me even though everyone is thoughtful and protective of me most of the time."  Julie

"One of the teachers - I used to help out in her class, voluntarily I might add. When I had occasions that I just couldn't stay on to help after work, I got the impression that she didn't quite believe that I was as bad as I said I was. She would often use the phrase, you’ll get better one day."  Sue

You're looking good today

"“You look so good, so young!” Oh how I wish I felt that way!!!!! No, people don’t understand. They don’t understand how when I hurt that it drains me and I just can’t do it all any more and have any energy left after. I’m going to vacuum today and that will pretty much drain me. If I go somewhere, that is all I do. No housework on those days. " Jeanie

"People come up to me and say "oh you're looking really well " and I actually feel like c**p..lol." Pam

Some weeks it sounds as though almost everyone with an invisible illness and a disabled  parking permit has been a subject of comments and nasty notes.

Nanaimo disabled parking decal

All of this takes a real toll on patients. There's a term for it too - Invalidation.  In fact "In patients with rheumatic diseases, invalidation has been shown to relate to worse physical and mental health and more pain." as seen in this recent study from the Eular 2014 abstracts.

The paper starts off with this statement  "The term invalidation refers to the patients’ perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological."

Here's another paper. This one assesses patient's perceptions of responses from others in an attempt to develop a measurement scale.

"The Illness Invalidation Inventory (3*I) assesses patients' perception of responses of others that are perceived as denying, lecturing, not supporting and not acknowledging the condition of the patient. It includes two factors: 'discounting' and 'lack of understanding'."

More awareness and more respect for patient reported outcomes will help on the medical side of things. Collaborative medicine may also make a difference as Drs try to engage patients in the decision making process.

It helps patients to find sources of online support. In one support group I know well members agree that it is a good way to talk about problems and fears for now and in the future without worrying the people closest to them. In these groups there is usually very little skepticism from other patients. That experience of acceptance and support, along with practical ideas can help to counteract invalidation in other areas.

Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions

" OHCs (Online Health Communities) help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. "

Splints are not Glamorous

When I was first diagnosed I saw an occupational therapist who recommended that I wear resting splints at night so that my hands and wrists would feel better in the morning.  They are quite effective for that and I have worn them for 25 years - of course they need to be replaced every few years.  To deal with the fact that plastic can make you feel very warm, even with small ventilation holes in it, I cut up cotton socks to wear as liners.  I posted these pictures of the resting splints that I use for my hands and wrists at night in my online support group.

This is the comment I got from Judy after she saw the pictures.

"Your hand/wrist splints look very much like mine.  I don't have to wear them much anymore.  I used to wear them every night.  One night, my arms got stuck together with the Velcro on each splint.  I had to have Jim help me get them separated.

I can put them all on and look like I am ready for Halloween. You should see a box in my closet - I have about every kind of splint you can think of in the box plus ace bandages.  I have all kinds of ankle wraps.  I used to go out of the house looking like some kind of a mummy with all of my wraps, splints, etc."

So that really brings home the glamour, or lack thereof, of taking care of yourself.

For my fingers I have found a more stylish and very effective alternative. Silver ring splints keep your finger joints in a good position and look like up to date and unusual jewelry. The most frequent use for them is to correct a swan neck deformity (love the RA vocabulary). I can show you a very obvious example of that, and will, but be aware that with more effective drugs and treatment you don't see fingers like this so often anymore.

So you see here the finger without the splint and then with it. Showing these pictures almost feels like stripping. Unless I am demonstrating textbook examples for medical professionals my fingers are very seldom front and center

The silver ring splints can be used for other hand problems as well (like EDS for example) and can make joints more functional.

                                                                          digisplint.com

I have read clinical studies that say that results of using splints are inconclusive. There are a few reasons for that lack of consensus. One is that people find them uncomfortable or ugly so they don't continue wearing them and leave the trial.  In my opinion the other reason is that those who run the studies would have to follow the people for many  more years than their funding would last to be able to see a difference, and would have trouble finding a control group who would agree to participate and not use anything.

We're all so individual with our autoimmune diseases.

                                                                     CafePress.com

I have more splints but not more pictures, so I will follow up with more in the future. I'm like Judy. A whole box of splints under the bed.  As they wear out. I don't throw them out, just in case.

Pathways to knowledge

Turkey season is coming. Here is a picture that my friend Phyllis took of  "The Bird Itself" in her driveway in New York state. It scared her a bit. Look at that face.

Phyllis was an avid gardener and was part of a Yahoo RA group called RA-Factor that I have been in for the last 10 years. Needless to say we have all grown close. People come and go depending on circumstances but many of us stay with it for the support, information and for the freedom to complain about RA to people who understand the issues and do not take it personally.

She was the first person to offer advice and she enjoyed telling stories about Mr. Sticky Fingers - her grandson, making tags for people and sharing advice with the group.

She started feeling unwell in general with a cough and a cold, a headache and back pain.  Her doctor suggested bronchitis and gave her an inhaler and prednisone. It was not the first appointment she had that was inconclusive.  With RA it's easy to assume that any issue is connected to the inflammatory disease.  It turned out that she was fatally ill and died a few years ago.

So this is a reflective post.  I remember reading about morbidity and mortality in RA on the American College of Rheumatology website years ago when I was avidly searching for information. That was depressing though I know the outlook is better now.  I kept finding new complications and issues that might occur, but managed to keep my anxiety level low by doing what doctors call watchful waiting.  So I watched and I waited and nothing ever developed.  That was one good way to make the anxiety level drop, even though it took many years. 

I think anxiety is a real problem with a chronic disease and knowledge is a good way to dampen it.  Things have improved in access to information. When I was diagnosed 30 years ago if you wanted info the sources were magazines, newspapers or books. Of course doctors were a possibility but I was feeling so shocked that I had trouble absorbing what the doctor had to say.

The internet has been a big help to me.  It has made me much more informed and has speeded up my treatment because now I know the vocabulary and which questions are the right ones.  It also helps me to know the treatments and what to expect if the medications are working.

  

                                                                                    Merrimack Pharmaceuticals
                                                                     Pathways to Knowledge

Now there are so many pathways to find the information that you need.  It's like going from the horse and buggy to a spaceship - from library books to 30 gigabytes.  Our first computer was a Vic 20. That means the memory was 20K and I think it had 3K of RAM.  We could play Pong and it was fun.

We still have one of these in the basement

It was an exciting learning experience but still a long way from social media and smartphones.  So I would say we've come a long way in healthcare and every day we see the results of the progress.

Support and information is now available at any hour of the day or night. That alone is enough to help us all to feel a bit better.