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Saturday, 30 March 2013

Grocery Shopping with RA-Keep Calm and Carry On

Many things in my life have been changed by rheumatoid disease. Food shopping  is not the experience it was.  I used to walk around the whole store almost daily and thought it was fun.  I even shopped with coupons coordinated to the shopping list and a sharp eye out for contests.  
Now my wish is to get in to the store with a minimum of fuss when it is not busy with crowds of shoppers.  I move too slowly for people in a hurry and sometimes they hit the back of my heels with their carts.  



The carts are bigger than in the past and hard to manoeuvre with sore hands and wrists.  Last time I was at a store on my own I couldn't pull a cart away from the end of the line which was jammed too tightly together.  Now when I get a cart with a wonky wheel I abandon it quickly.  It's a complication not worth dealing with.
Lately I found a new store that has great fresh reasonably priced food in the salad area. For $22 yesterday I got enough food for 2 dinner main dishes and lunch and snack food for almost a week.  All healthy work-savers and chopper-stoppers.  The same place has a whole wall of prepared and/or chopped food so the only barrier is money.  It's like shopping Nirvana for bad hands.  Sometimes I even manage to shop only one aisle.
                                    Salmon           Shrimp Salad

Our new method of cooking involves making large quantities, eating the same thing for a few days and also freezing half when we make it.  The days we don't have to "really" cook are great.  

And it seemed like such a coincidence that I saw friends on Twitter talking about freezing food on the day I wrote this post, although at 4x the recipe quantity they are far ahead of me.
                                        Mega Lasagna

Here's a tweet that demonstrates just how happy we can be with frozen resources:

27 Mar If I take spaghetti sauce out of the freezer for dinner, I can get by one more day w/o grocery shopping. Once again, for freezer meals!

That sentiment inspires me!

We used to grow our own vegetables. I wistfully remember the garden plot where the kids and I worked together.  Now it's a memory because of the work involved.  We used to grow so many tomatoes, and zucchini that we shared with our neighbours

 Just mentioning tomatoes reminds me of my grandson. That's really him in the picture, not a doll.




The concept of turning over a new leaf is not an theory anymore.  It's a new reality for many whose lives have been altered forever by a diagnosis.  Of course that is not the only life changing event that can occur. Most are more desirable and some are a lot worse.
So I will embrace my pre-chopped, frozen and pre-made food while I shop in the off hours and try to eat healthy and look on the sunny side.
                                             Sun by Reem





















Wednesday, 27 March 2013

Trapped in a Sports Bra

There are certain things you have to adapt to when you have sore and swollen or damaged hands. It's obvious that your days of carrying all your heavy groceries at once will end.  But are there other problems?

I decided one day that the perfect comfortable item that I needed to have was a sports bra.  I could just see myself getting into great shape and looking cool and sporty.  So after consultation I picked out a few and headed to the change room at Lululemon.  


                                                Nice sportsbra from Lululemon

It was very disappointing to find out that reality did not match my imagination.  I managed to get it on with difficulty but the problems really started when I tried to take it off! I ended up with it half off and was unable to get any further.  Panic stations! I was totally stuck in the middle of removing it. The thought of calling for help in that state was humiliating. No one sees that much of me. And there was no way the situation could have been less flattering. Well, I relaxed,took deep breaths and obviously managed to leave the store but not without a severely bruised ego.

Thank goodness yoga pants are so easy to wear.  At least I can go into a sportswear store and find something.



There have been more close calls with humiliation. Once I went to a meeting at our community center and had a lengthy delay while I struggled to get out of the stall in the washroom. The place was almost empty and I had no cell phone then but would I really want to call 911 or someone at home to come and rescue me?

Luckily there are many ways to adapt beyond brute force. (Now there is something I don't do). I have exacto knives in most rooms of the house.  How do you cook without one?  



This is a super convenient food if you can only open the freezer bag inside and also the *%darned zip lock freezer bag inside. I have been known to slice the zipper part of the bag right off after I throw the chicken on the floor.



Once at a conference one of the attendees had brought some Boost and none of us were able to open it.  It took a waiter and kitchen tools. They have since revised the closure. But this is a product made for people who are frail and weak.  Massive fail.

I'll end with humour to cleanse the palate after those confidence shaking stories.
.
This "funniest voice mail I have ever heard" always makes me laugh even after so many years. and laughter is a great antidote.  






Saturday, 23 March 2013

Hints on Injecting biologics

Here's a piece of advice about injecting biologic drugs I got from an online friend many years ago.  I saved it and have passed it on before this. I am sorry I can't give credit to the author.

She said:

"Here is what works for me.

First thing give yourself time, this isn't a facial, but it is something you are doing for you. Treat it like a gift. fix a cup of coffee, go someplace quiet, play calming music.



Make sure the syringe is WARM. your body is 98.6... room temp will be a shock. I leave my Humira sitting out for 30 minutes as suggested. Then just before I inject I roll it between my palms.

Ice the area of your tummy you will inject. Get it REALLY cold. I have an ice pack in a light tshirt, and leave it there for a good long time. You want that area numb. Wipe your tummy with the alcohol pad and let it dry.. Completely.

Pinch up a roll of flab about the size of your thumb and finger together, check the syringe, and gently push the plunger in a little to get the air out of the syringe..

Hold the syringe like you are throwing a dart, and slide the point into the skin you have pinched up. The ice will have numbed it so much you won't feel the needle slide in.

                                                chronicle.augusta.com

Release the flab, and shift your fingers on the needle holding it between the index and middle finger, with the thumb on the plunger.

SLOWLY depress the plunger..I depress to a chant..."My toes won't hurt, my ankles won't hurt, my knees won't hurt, my hips won't hurt, my fingers won't hurt, my wrists won't hurt, my thumbs won't hurt, my elbows won't hurt, my shoulders won't hurt, my jaw won't hurt...this shot stings but far less than my body hurts."



You should be finished then, remove the syringe, place the ice pack back on for maybe 30 seconds, and dispose of the needle...now finish your coffee.

You can do it"

I love the way she put this and really appreciated the time she took to support others.


Wednesday, 20 March 2013

Fatigue and RA

Before I was diagnosed and treated for Rheumatoid Arthritis I had so much fatigue that I would come home from my part time job, lie down on the bed fully dressed and stay that way till morning.  I was so tired I could not even get up to eat dinner, much less make it.  That was when my fatigue was at its relentless worst.


                                      

After treatment started and I began to feel less fatigue it was still hard to keep ahead of it.  My strategy was to spend one day a week in bed resting to recover my strength to get through the other six days.

As I adapted I changed my job and my life, my hobbies and my socializing.


                                Stuck in a groove.  JapanPrint

Finally I settled into a groove - a livable one but not the ideal.  I had enough energy to work full time.  This was an accomplishment I was proud of but I had to go right home after work. Shopping stops or doing errands took too much energy so I did the least possible on weekday evenings.  Weekends were for resting and possibly groceries and visiting elderly relatives.

When I got home from work I would often lie down so I could get through the evening.  The image in my mind as I lay there without energy to even listen to music was of a doll lying in a dollhouse waiting for life to happen. It was profoundly unsatisfying.


                                    warmhotchocolate.com

It takes energy to think and to plan ahead.  If you don't have that you don't make the right choices, or any choices.  I did start to exercise on the advice of my helpful physiotherapist and found that I could do muscle tightening exercise with no ill effects. But when I did the clamshell exercise with a Theraband 5 to 10 times I found that my hips felt like spaghetti for 2 full days afterwords and made me weaker.  


                                   ca.shine.yahoo.com

It was at this point that I noticed in my reading the claims that biologic drugs improve the quality of life and sense of well being in RA. Because of this statement I worked on convincing my rheumatologist to prescribe a biologic for me.  

Of course this was not the only reason I wanted to add a biologic.  I wrote here about how shocked I was to find that joint damage still continued with methotrexate, even when other symptoms decreased, and I couldn't and still can't afford to have any more damage.

After four years on the biologic drug Humira I now have enough energy to exercise and not be exhausted for the two days following. It also means I can do errands even after working all day.  Small gains in a sense but they matter a lot.


                                                        scienceDirect.com

Here's an interesting look at the way inflammation and prolonged response to it can affect the body. In Consequences of the Inflamed Brain Dr Maier and Dr Watkins say "mechanisms that evolved to handle acute emergencies lead to outcomes that nature did not intend if they are engaged too long ... 
outcomes may become established, leading to cognitive impairment instead of brief memory disruption, depression instead of reduced mood, fatigue instead of inactivity, and chronic pain instead of acute pain. That is, physiology can become pathology when a set of processes designed to be relatively brief becomes prolonged."  go on to conclude that inflammatory events can lead to this process which includes fatigue.

I also believe that pain takes a lot of energy to deal with.


                                         stsiweb.org

Fatigue can be affected by our mindset and we can improve it somewhat by cognitive therapy but I strongly believe there is a large physical connection between RA and fatigue.  Having a positive mindset did not affect my ability to exercise and be more active. Taking a more effective drug combination helped my fatigue both now and at the onset.

I believe that other factors have a part to play but that the fatigue is caused by RA and that changing my attitude will only work if I am receiving the best treatment for the physical disease.

Saturday, 16 March 2013

The Expert Patient

After a few years with a chronic illness we certainly become experienced, but that alone does not make us experts.  Achieving expert status takes work.


                                We Are Experienced

Does it really take 10,000 hours to become expert? In the case of illness endurance alone is not enough.  You've got to go out of your way to find out more. Educate yourself and you may become a knowledge expert, a support expert or maybe a connector or aggregator who puts information and people together for everyone's good.

I have found active Yahoo Groups in specialized areas. Sometimes the level of information available is due to one dedicated person.  Often it is core group which patiently covers the topics over and over as new people come along with an acute problem, use the advice and move on as their problems resolve. It's hard to keep a group going long term and many of them are gone when you go back a few years later.

I was lucky to find some real experts who saw me through two bouts of shingles.  
Illustration from Atlas of Human Anatomy, Frank Netter MD. Illustration showing how shingles spreads in bands (Dermatomes) on the body

When I went looking for a group with information about Fuchs Dystrophy I think I found the motherlode at a Yahoo group called fuchsfriends which is "a place of support and information for people with Fuchs' corneal endothelial dystrophy"



                                                 ehealthwall.com

These "patient experts" are so much help because they not only have a narrow focus on a specific disease but also they also have personal experience.  I am a member of another group where the moderator's signature is "Gina, Not an MD". Her advice is so good that the disclaimer is necessary. (Of course all such groups come with an additional disclaimer saying advice is not to be construed as medical advice)

Online support is a valuable commodity and I am lucky to be in a very long term supportive group at ra-factor.  Gilly, the group owner and "list mom", is one of the most empathic and consistent people I know.


                               Valuable commodity  dhotw.com

She said she does it because she can't imagine not doing it. Even on vacation she wonders how we all are doing.  She says "It's nice to talk to people, like a family" And after many years of conversation with these friends who "get it" because their problems have similarities to mine I would like to go visit them all in real life.

It would be quite a journey - to the UK, Australia, Canada and all over the US. Where but online would we ever have met and shared so much ?

And here we all are (approximately):

There are complaints about this map. More people wanted to be the cat than anything. Others said "Where are the dogs?" Our Texas member said we might as well just put a gun on Texas based on some current political moves.




                              A favourite "Welcome to the Group" gif




Wednesday, 13 March 2013

Progression of Damage and Why It matters

Damage to your joints sounds so academic and unlikely when you first get a diagnosis of inflammatory arthritis (or Rheumatoid Arthritis Disease). Even though joints are painful and swollen it's hard to believe that your bones will be affected.  I developed RA at 32 and took having good health for granted then.  There was no time to be sick with two boys 10 and 11 and a job.


                                       Anetto archive

You start off as normal healthy person and Rheumatoid Arthritis comes sneaking up on you gradually in most cases.  You start to notice pain and fatigue.  Your joints hurt and you feel so awful, and yet you still wonder  if you're sick or is it just life catching up with you? But now the effects are hitting you like a ton of bricks. My doctor thought I was dramatizing and hysterical so the process of finding the problem took longer.


                                www.cropthornehouse.co.uk

But finally you have a diagnosis and start on methotrexate, the "gold standard" drug. You have to wait to feel the effects and they creep up on the RAD just like it crept up on you.  Finally you start to feel the drug is working. The pain and fatigue ease up and you can function better bit by bit, even though nausea and gastro effects may make you feel like crap. (And this is a good result) 

(note: injecting MTX is easier on the stomach than pills)

And you are happy that your joints are not swollen and there is less pain and fatigue.  Your normal/old life is hard to remember but you feel better and that's some relief.  However from my reading and the evidence of my own joints after years on MTX, damage to your joints may still be occurring. 

If you were to look at X Rays it is easy to see the difference between a normal joint and one seriously affected by RAD


                                     www.paincaredirect.com

Normal joints have space between them and you can see 8 separate bones in the healthy wrist.

I was shocked to find out after years with RA and MTX and assorted other Dmards that MTX does not stop damage to bones from occurring.  Your symptoms may improve with that treatment but it is no guarantee that your bones are not being eroded and that your joint space is not narrowing.

For years I thought that I was on the best treatment and did not think I needed a biologic drug.  That was before I saw information about new clinical trials and read that with a biologic there is a lot less joint destruction.

As an example the Premier Trial concluded that   "ADA+MTX (adalimumab + methotrexate) inhibited both JE (joint erosions) and JSN (joint space narrowing) progression independently of disease activity. JSN played a more prominent role in patient-reported outcomes than JE. Preventing the onset or worsening of JSN probably represents a critical aspect of effective disease management of early rheumatoid arthritis patients"

And here "Early intervention with combination therapy also offered substantial protection from radiographic damage compared with methotrexate monotherapy." 


                                  MTX Right/Folic acid Left

Dr Haraoui says this in an editorial from Annals of the Rheumatic Diseases

"Indeed regardless of the therapy used, approximately 50% of patients will not show radiographic progression over 2–3 years; This percentage increases up to 75–85% of patients receiving combination therapy, and those who do progress, progress less than patients on methotrexate alone."

There are many reasons that I have a lot of damage to my joints. Some is due to late diagnosis of course, but 20 years on MTX, even with other associated Dmards, was not enough to stop the joint damage.  By the time I had a wrist fusion the Dr could not distinguish the eight separate  bones and said there was no cartilage at all in the joint.

When you end up with this much damage there are many things that are difficult or painful for you to do and some things are just not possible anymore. Damage leads to disability. "The association between joint damage and disability in rheumatoid arthritis (RA), especially in the later stages of disease, is a main reason why radiographic joint damage is a common and valid outcome measure in RA clinical trials"


                             Structural Damage www.ehow.com

Here is one of the main goals of rheumatology treatment:
"The primary goal of treating the patient with rheumatoid arthritis is to maximise long-term health-related quality of life through control of symptoms, prevention of structural damage, normalisation of function and social participation." 

The treatment is now much better and the levels of damage to joints have decreased over each decade. The level of disability is decreasing over time with good treatment.  That's the good news



Saturday, 9 March 2013

Sjogren's Helpers

Every chronic disease comes with its own shelf of products to make your life 'easier'.  With Sjogren's Syndrome you have many parts of the body with symptoms that you have to deal with.


                                     cgphoto.photoshelter.com

There are many strategies that you hear of to help your symptoms in one way of another, very little that helps overall.  I looked around my house and found many standbyes and possibilities.

Salagen (pilocarpine) would be the winner if there was one prescription drug I would not give up. When I don't take it my mouth and throat get unbearably dry and I cough and choke when I swallow. My voice even becomes faint.



You can have a mouthwash made with the active ingredient (pilocarpine) I found it very bitter.

There are also many artificial saliva products available like MoiStir for one. Biotene makes a special dry mouth tooth paste and mouth wash, as well as my stand-by product Oral Balance.



The dental hygienist I see suggested a little olive oil for mouth dryness and a support group member suggested oregano oil. The benefits of using MI Paste and a night guard can be found here.  As you can see Oral Balance and MI Paste get a lot of use in my house. 



I keep the tubes sitting around for a while in case I run out and need to try to get one last bit out of them. Oral Balance is a product I use every night before I go to bed. I hate to wake up and have a dry mouth. It's a gel you put between your teeth and gums before bed.



And this is a product used by singers, one of those tried and true ideas based on a natural product.




In the category of dry eyes some use a personal humidifier at their bedside.  I bought a pair of these goggles called Tranquil Eyes through the Sjogren's Society of Canada and so far used them only on a plane.



I hear that they are also great for sleeping. The spongy part that touches your eyelid can be moistened for extra sleeping comfort. 

Blepharitis is often part of the dry eye equation. I have tried these items to help.  The Blephagel was suggested by my opthalmologist.



And don't forget the nose. I have found the saline spray the most helpful item so far.  I have not wanted to use a neti pot or a nasal rinse but I would if things got worse.


When my nose gets so dry I can feel it in the sinuses and that's when I use saline spray. I find the NeilMed easiest to handle.  It probably works best if you use it every day but it's easy to get tired of working so hard to stay in the same place.  That's what happens when you treat the symptoms and not the underlying causes. A lot of work and no apparent progress, though not getting worse is what we all hope for.

This is far from a complete listing of products and is not meant to be a commercial for items. They were all here in my house even though I use some very infrequently.

For additional information there are tips at Sjogren's Society of Canada, and also at Dr Robert Fox's helpful and comprehensive site called dry .org. That was one of the first resources I used.

It's also a great benefit to attend the Annual Conference of the Sjogren's Society of Canada. The speakers are all at the top in their fields, and there is an hour set aside to give patients in the audience a chance to ask speakers and other volunteer health professionals questions of their own.













Wednesday, 6 March 2013

An Immune System Gone Wild 2012 Conference

Dr. Arthur Bookman agreed to let us use his inspired title for the 2012 Sjogren's Society of Canada National Conference. What a great title!  He used it for a webinar. You can no longer see it but you can look at the slides  he used and learn more about Sjogren's.

It's too bad that it's so tough to make our immune system change its ways once it goes astray.  I wish for a miracle food or great medications.



The Sjogren's Society of Canada will be holding the 9th Annual National Conference on May 1 and 2nd in 2015, so I thought I would tell you a little about the 2012 conference which was called "Learn, Connect & Empower" and was held in London, Ontario.

The information below about the speakers is very limited and only reflects a fraction of what they said. It is always one of the most informative conferences I attend and I would urge you to attend if you can. In fact medical professionals can get CME credits for attending.

There were 7 speakers featured. Dr Bookman started off by giving an overview. He says that people who come to the Sjogren's Clinic that he runs have usually seen 3 doctors over 2 1/2 years before they get a diagnosis. He described Sjogren's as difficult to treat.

Then we heard from Dr Rookaya Mather. She pointed out that dry eye actually causes functional disability because of the visual disturbance and discomfort of the eye.  The effect on the quality of your life is similar to that of having moderate angina and it is best to tackle it early.  She recommends 2000 to 3000 units of Omega 3 per day from fish or from flax.


                                        Omega 3's   anetto

The next speaker was Dr Juan Yepes talking about dry mouth, which is one of the worst symptoms to deal with if you ask me.  There's a helpful product in the US called Aquoral which he recommended as the #1 prescription product.  He also recommended xylitol because it changes the action of the bacteria in the mouth, and chlorhexidine mouthwash. He mentioned this article about a proposed electrostimulative device that could help in future.


                                   xylitol molecule  wikimedia.org

As usual one of the most keenly anticipated segments was the round table discussions where individual patients have a chance to ask some questions of their own.  There were 11 tables, each with a doctor or other health care professional who would answer questions. Even when your own question is not being answered it is instructive to hear the responses.


After a very good lunch we heard from Dr. Ann Parke. Her talk was titled "Sjogren's Syndrome a Lymphocyte Aggressive Disease: From Dryness to Lymphoma."  We found that 50% or more of RA patients may have Sjogren's Syndrome. There is an increased risk of lymphoma but it occurs in under 10%, and is most commonly MALT .  She mentioned a new concept that says Sjogren's is "Systemic Lupus Erythematosus (SLE) of the mucous membranes".

Dr Kevin Fung talked about Ear, Nose & Throat Complications. He sees 80% cancer patients and 20% Sjogrens and diagnoses by ocular and oral signs as well as saliva, blood work and biopsy. As an ENT doctor he deals with salivary issues, nose and sinuses, ear, thyroid and throat, including swallowing and speaking. His expertise was greatly appreciated.



Oh for the good old days of drool dogforum.com


Dr Miriam Grushka is the first person I would go to see for burning mouth syndrome. The symptoms include not only the oral burning but also dryness, the feeling that something is stuck in your throat and changes in the way food tastes. Your oral tissue can appear normal even though you perceive it differently.

Dr Cindy Hutnik was the final speaker and her talk was titled Eye Lid Facts and Fiction! I found out that 50% of people with rosacea have blepharitis. It is also very common in Sjogren's and rheumatoid disease. The lacritin which renews the eye surface is missing in dry eye.  To prevent blepharitis you need regular eye checks and also eyelid hygiene. This includes warm compresses, lid massage and lid washing. There is strong evidence that Restasis restores health to tear glands. Another point made was that avoidance of BAK (benzylchromium chloride) is important.  This is a preservative found in some eye drops. Preservative free is the better choice for frequent users and sensitive eyes.



So that's a small view last year's conference. I'm looking forward to another invigorating conference this year. If you are interested in attending you can get further details on the website at http://www.sjogrenscanada.org/ and I will see you there.






Saturday, 2 March 2013

Wrist Fusion Surgery

My wrist has a lot of damage that occurred before I was diagnosed. Back then I saw a surgeon who would have been happy to do many procedures to make my hands look and function better but I could not believe that it was necessary then.

25 years later...

Recently I was worried that I might have a ruptured tendon so I saw an orthopedic surgeon.  His opinion was that I had to have my wrist fused before any other hand surgery occurred. He said a replacement wrist joint was not an option for me, given the spotty success rate.  Since there was only about 10 degrees of movement in my wrist it sounded as though I would not lose much dexterity and my hand would be in a more functional position.

This is one view of how it looked before the surgery:


You can see that my hand above has an ulnar deviation. The whole hand is no longer straight. More often in RA it is the fingers that sway to the side. This is the way it looks now:



Much better than before. Very strange how you don't really notice as things change over the years.  Finger deformities have always seemed more obvious than the orientation of the hand. 

My operation was 5 weeks ago.  It was done as day surgery and it took  2 1/2 hours to complete.  I had a nerve block that numbed my whole arm.  When I saw my arm raised in the air and could not feel it I thought it belonged to someone else.  

After the operation they put a cast on from below the knuckles to above the elbow that left me able to bend my arm a little.  You can't tell that from the picture because the cast is wrapped in a tensor bandage.  There is an open gap down the whole cast to accommodate swelling.  That purple arrow on my shoulder marks the correct arm for the surgery.  There were more markings under the cast.




The nerve block was very effective and I have moderate regrets I did not stay  conscious through the operation to hear the surgeon talk his surgeon assistant through the process. However my curiosity wilted once they started.  I have heard the noise level in the OR is high and I know surgeons use power tools in their work. Remembering the noises was not on my bucket list.




Now that my wrist is fused it is supposed to be a pain free joint and stronger than it was.  It's early to say how that will work out but my fingers still move well. They were very bruised and swollen but that's normal after surgery.  Anything the surgeon touches seems to bruise and swell more dramatically now than when I was younger.





I am told that the incision is healing well and it is meticulously stitched - it will probably be unobtrusive. In the following picture you can barely see it.

                                               4 1/2 weeks after surgery

                                             just after stitches and cast were removed


I was glad to see this blog before my surgery. Reading someone's actual story of the process is more illuminating than reading the technical sites like Wheeless. I had read enough that there were no surprises after the surgery.

All in all my hand looks better in profile and straight on. After the cast was removed my elbow range of motion was diminished but with rehab exercise from the Occupational Therapist (OT) I have regained most of it.

There is still some pain in my wrist as it heals, and I must wear a splint for the next month. The OT custom-makes them for each hand surgery patient.  The splint can be removed for washing and exercise.
                                     The Splint

I am doing a follow up post showing how it looks 4 months after, and also the X-rays of the hardware they actually use for the fusion. I can hardly believe what is under my skin.  You can see it here.