Ode to the cotton glove

Posted on January 27, 2012 by Amie

Ah yes!  The cotton glove.  A hand saving tool for those of us with eczema on our hands.  Let’s just say that I have a love/hate relationship with my cotton gloves.

hand eczema

My glove stash: Here are all the gloves I could find in a quick search of the house/laundry.

In 2011, when my hands were extremely bad I wore these little beauties 24/7 changing them as many as 5-6 times a day depending on if my hands were oozing or not.  They are fabulous for keeping dry hands moist when combined with a good moisturizing cream.  I used them primarily to keep my hands comfortable as my hands get very painful when they are in full blown eczema mode.  Even before my episode last year I have been wearing a pair of cotton gloves to bed for probably 12 years now.  At first it was a way of “trying” to control my nocturnal scratching.  I say “trying” as it kinda helps but not really as one of two things always happens; 1) I rip them off in my sleep and scratch anyways (finding them somewhere in the bed come morning), or 2)I just scratch with them on anyways creating holes in the ends of the gloves with my nails.  Below are just a few of the many examples I have of #2.

These poor gloves have seen the wrath of my noctural scratching.

I have also purchased a couple pairs of bamboo gloves but for some reason they make my hands REALLY itchy.  This is interesting as I am allergic to grass and bamboo is the largest member of the grass family.  Note to self, stay a way from bamboo.

Cotton gloves are surprisingly pricey.  An average pair costs about $7 or more making my stash worth a fair bit. (I think I counted 26 pairs this morning so at ~$7/pair that is about $180 in gloves)

I haven’t talked much about the mental game you play with yourself as you come to a point where you have to wear gloves all the time.  At first I would take them off when I was around a lot of people but my hands LOOKED awful and I just felt like people were staring at them (not sure how true that was though).   Then I just started to wear them all the time.  I wondered about the general public’s perception of  me, things like was a germaphobe or OCD about cleanliness.  I can’t lie and say that I didn’t care because I did care, very much to be honest.  BUT, I had to get over that and just learn that this was what I was dealt.  So, I just wore them and eventually they essentially become apart of me almost, I felt naked without them sometimes.

There were some days when people’s comments would start to annoy me, mostly people at work just trying to be funny.  I got the old “Hey Michael”, if I was wearing only one glove.  Crap like that seems innocent to the person saying them but after awhile it is just annoying and kinda hurtful.  Other times people would ask and I would just say “Oh, I have eczema on my hands”.  People were and are very sympathetic when they find out its because I have eczema on my hands but I can’t help but think what people say (or think) behind my back.  I think if I saw me I would just think I didn’t want to get my hands dirty (or germy) which in our climate of contagious illnesses might actually be a decent idea.

So there you have it my acknowledgement to the cotton glove.  I hate that I need you but love that you are available to help me deal with my eczema.  We’ll have many more days and nights together I am sure.

eczema

 

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Are more doctors “pro-sun”?

Posted on January 20, 2012 by Amie

I am seriously trying to get off the indoor tanning thing as it wasn’t intended to be the main message on this blog.  However, there are some important things that surround indoor tanning or just tanning in general that I think I need to talk about.

Here is an article from Smart Tan called,  “More Doctors Pro-Sun Today: Poll“:  I like the message in here as it isn’t the old doom and gloom message about the sun we have been so used to hearing in the last several years.  I am alarmed that once again money is a driving factor towards the discouragement of the use of sun to aid skin conditions.  I can relate to why people would choose a tanning salon over a photoderm clinic.  The closest clinic to my home is about a 50 minute drive whereas the tanning salon is about 3 minutes.  The money I save on gas not going to the clinic pays for my minutes at the salon making the economics of my decision very easy.  In the article it does say physicians referred people for therapeutic reasons, I am thinking that many of those people may be using the tanning bed for mental health improvement as well (the vitamin D is a great bonus!).

I just wanted to point out that besides Dr. Y all of the medical professionals I see support my use of UV tanning as a control measure for my eczema.  These include my family doctor, naturopath, allergist, midwife (when I was under her care) and of course Dr. G (the dermatologist at the photoderm clinic).  I have seen all of these professionals in the last year and none of them have said anything but encouraging words about what I have been doing, of course it does help that they (and I) can see the results.

After I started tanning one of my co-workers opened up about her psorasis and said that she had just gone to the dermatologist who actually told her to “get some sun on that!”.  So I guess normal derms do actually recommend sun.

A very telling quote from the above article:

“Professional tanning facilities are trained to deliver non-burning dosages of UV light to create a cosmetic tan, but a side effect is that people are treating all sorts of conditions informally and effectively. What we’re really seeing is dermatology’s anger for the loss of billions of dollars in phototherapy treatments in their offices, as consumers choose a more economical and convenient method of self-care.”

I believe only good things will come from people realizing that a controlled tanning environment may actually help your skin (especially if it has a photo-responsive skin condition).  Living with eczema has its trade offs.

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When you are THIS bad they give you mega sized cream!

Posted on January 18, 2012 by Amie

I get a good laugh sometimes at the offers I have received from doctors.  For example when I was at the photoderm clinic last year Dr. G offered to write me a script for a larger jar of Betaderm cream and ointment.  I agreed.  I mean why the heck not, right?  I was quite surprised when I picked up my script to see a huge prescription bag containing one 450g jar of the ointment and one 454g jar of the cream.  I am seriously set for quite sometime.  They are apparently the jars the pharmacists use to scoop the cream into the smaller jars I’ve been used to getting.

You may be asking why he would give me both the ointment and cream.  This was actually one of the first times I took the ointment (my whole life I have refused to use ointment as I hate to put greasy stuff on my eczema because it causes sticking to everything), anyways Dr. G explained to me that it is best to use the ointment when my skin is dry and use the cream when it is wet (ie: oozing/weeping).  To my surprise this works quite well as I always put cotton gloves on after I apply them so I never notice the difference.

At the time of my appointment with Dr. G the betaderm wasn’t really working very well when I followed the directions of using it sparingly twice a day.  So, he told me that instead of increasing the cream strength that I should just apply it more often which is also why I got these mega jars.

Here is a picture of the huge jars:

eczema cream

Holy Big Jars!

The jar on the top left is 60g and the top right is 100g, for comparison.

Since I use these only when REALLY needed I have lots left but as Dr. G promised I am certainly not going to the pharmacy on a regular basis for more.  🙂 Small blessings, I guess.

 

 

 

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My hands, the journey of grossness.

Posted on January 10, 2012 by Amie

 

Okay, I think its time for some pictures of my eczema adventure.  I haven’t posted many but I know seeing eczema like yours is  therapeutic as it is generally something we hide and deal with alone.  I am done with being in the closet about this so….

Since my hands seem to be the largest target for my eczema here they are in March 2011 on the day I started tanning (as you can see I started with a 6 minute session):

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Here is my right hands he day I started tanning - March 23, 2011

 

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Left hand the day I started tanning - March 23, 2011

So here are the humble beginnings when  I said enough and took matters into my our hand (ha, no pun intended).  I didn’t think at the time that I would be continuing tanning past the original few minutes that I bought. ( I am not sure why the pictures are slightly yellow but I assume poor lighting.)

These pictures are hard for me to look at as I was in a tremendous amount of pain and discomfort.  I was wearing cotton gloves 24/7 just to feel somewhat normal.  I couldn’t help my children wash themselves in the bath tub and even wore nitrile gloves on top of my cotton gloves to use the bathroom (as washing these raw hands was excruciating).  In case you were wondering I washed the gloves like I would my hands so I could reuse them on the next visit.

Here are my hands 7 days later on March 30, 2011.  I took these with my phone so they are small (even at full size).  I could barely move them at work enough to type and was pretty sure tanning wasn’t helping.

eczemaeczemaSome days my hands were so sore and raw that in order to keep them moving I would have to wear cotton and nitrile gloves to keep the moist.  This of course isn’t particularly recommended as its really easy to get bacteria trapped in the gloves and since they don’t breath well you can get an infection really fast.  However, desperate times call for desperate acts sometimes.

So, I took the next pictures on April 1, 2011.  The photo at the top of this page of my arm was taken that day as well.  It really shows how bad my eczema was in 2011.

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Here is my right arm on April 1, 2011

You will see that my hands look a bit better (less raw?), I probably used some steroid cream the night before to take the edge off (a very desperate measure for me).  But take a look at the extent of the condition.  Yup, all the way up to my elbow.  I wore lots of long sleeve shirts to cover up this nastiness.  I think I took these pictures as a “hey look its getting better” picture, yikes!

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Here is my left hand and arm on April 1, 2011

Believe it or not during this time my arm wasn’t particularly itchy but my hand were exceptionally itchy.  Perhaps I was just focusing on my hands as having the most integral part of your body hurting was horrible.  I was also pregnant at the time in these pictures but have had my eczema flare this bad while not pregnant as well.  (Some people still like to tell me that this was ALL due to the pregnancy hormones which I find rather interesting as I wasn’t pregnant in high school when it was equally as bad.  Food for thought.)

eczema

Here is the back of my right knee, April 1, 2011

Just for fun here is a picture of the back of my leg/knee.  Now this was itchy.  Being in the crease of my knee really sucked as once it was oozy it was very uncomfortable.

I didn’t take many other pictures after this as my skin began to clear up as soon as I went into the tanning bed for 8 minutes.  Yup, that was my magic number.

Okay, so lets take a look at now.  I’ve had my baby and I continue to tan (once or twice a week now).

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Here I am today - Jan 10, 2012

It’s been about 9.5 months since I started tanning.  I use my steroid cream very rarely, try to wear my cotton gloves when my hand start to act up (to keep moisture in) and always wear cotton gloves and nitrile gloves when cleaning and washing dishes.  (That’s right these hands never soak in water, ever.  The most they get is the shower and washing after a trip to the bathroom)

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Here is my right arm - January 10, 2012

You’ll notice that my arm is quite tanned now with freckles and scars as reminders of the eczema battle I face from time to time.  My hands are dry but I have to keep them that way in order to keep my eczema under control.  Of course not too dry as that causes cracking and other issues.

So there you have it my last 10 months or so in picture form.  They say a picture is worth a thousand words.  There are many words for all of this but thankful that I took a risk and tried something considered unconventional which resulted in getting my tactile life back has no words, its priceless.  Not a cure but definitely a good management strategy for me right now.

 

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Tanning helps skin conditions such as eczema

Posted on December 10, 2011 by Amie

I am not a medical doctor but I sure am an expert on me and my medical conditions.  That’s right if you’ve been reading along on this blog you’ll know that I have received little satisfaction with how eczema (and psoriasis) are dealt with in a GP or even general dermatology way.  So, I usually research and take matters into my own hands.

When I was in highschool and experiencing bad eczema symptoms I was referred to a photodermatology clinic (in Moncton, NB) which offers UVB treatments for photoresponsive conditions such as eczema and psoriasis.  I did it for quite awhile with decent results.  I left Moncton for my schooling and that was the end of the treatments.  Come to think about it, this was the same time in my life that I developed eczema on my hands, just a few fingers at first in 1999.

So, in March 2010 I decided that I would try out just basic tanning at the local tanning studio (which just happens to be a few minutes from my house).  I was about 16 weeks pregnant and desperate to get something that would work.  I spoke with the owner of the salon who was friendly and cheerful, she explained the etiquette expected in the beds and how they have standards around the amount of time people are allowed in the beds.  It’s about safe tanning through not burning and limiting exposure.  Being a biologist whose done a lot of microbiology I also drilled her about the sterilization procedures (btw, they don’t sterilize they sanitize but UV is a great sterilization tool).

So, I started tanning.  Oozy and gross I hopped in the bed for 6 minutes.  I started going once every two days for 3 months working my way up to 10 minutes in the bed.  A funny thing happened when I started spending 8 minutes in the bed, my eczema started to get better.  Yes, it was drying up and feeling much better.  I was sold on this and bought some more minutes.  After about 3 months I was trying to go at least once every 3 days for maintenance.

Its certainly not an exact science however it has worked for me.  I now spend about 12 minutes in the bed once a week and so far so good.

Here is my solution (for now):

 

 

 

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Allergist… shedding some light on triggers.

Posted on December 10, 2011 by Amie

So, way back last year (March 2010) when I was sooo desperate to get answers to why my eczema was flaring so badly I had my family doctor refer me to an allergist.  Being in Canada where we have “universal” health care I got the next available appointment which was in August.  Knowing I was going to be 9 months pregnant at that time I requested another date and was given an appointment in October.

I went in October with my mostly normal looking skin for the testing.  The appointment started with a round of questions to figure out why I was there.  It was kinda hard for me to describe what my last year has been like. It went kinda like this, “Yes doctor my eczema was crazy disgusting and nuts but now its doing okay”.  My family history is always the same with eczema and allergies running in the family, ect.  Anyways, he somehow decided which tests would be best for me and I was set up with the nurse who would scratch my arms with allergens a ridiculous amount of times.

It was all of the foods which I had tested allergic to with the naturopaths IgG testing last year plus environmental allergens (mold, dust, trees) and some animals (dog, cat, horse, cow).  I know I am crazy allergic to deer as I have a history of my whole face swelling when exposed to the fur (okay, my Dad is a hunter if you are trying to figure out why I would be in contact with deer fur).

Just for fun, I took this picture a few minutes after the pricks.  Yup, I am allergic to ragweed, cows, horses, grass and “trees” (I think birch was one).  Oh, just seeing this picture makes me itch.  Here it is:

After a very itchy 20 minutes, Dr. F came in and checked out the damage.  Whoa! he says, “you are very allergic to cows and horses”.   After measuring a couple of the food reactions (apparently a reaction of more than 3mm is considered allergic) and noting that NONE of the foods that showed up in the IgG testing came back as positive (well, banana and sesame were 2mm so I should watch them apparently) he invited back to his office to discuss the findings.

Back at the office we began with a discussion on dust.  He recommended that I get a house cleaner (Score!, although he can’t write a script for this) to help keep down the household dust.  He suggested  that I consider getting “mite-proof” pillow and mattress casings for my bed to help keep the dust mites from propagating in my sleeping space.  He gave me some information on a Canadian company called CAAP (or Canadian Allergy & Asthma Products) who sell high quality products with LIFETIME warranty.  Here is the information sheet:

Dr. F also included in our conversation that he didn’t have any shares in the company but was quick to add you get what you pay for.

 

 

 

 

Onto my other allergens;  grasses and ragweed.  He gave me this lovely chart for the Ottawa area.  He recommended that I keep track of my eczema symptoms over the next year and see if they correlate to any of the environmental triggers.  He said that if they do I would be a prime candidate for allergy shots.  Here is the chart:

You can see at the bottom where he wrote all the allergens I need to watch for.   I also reacted to dogs and cats.  I have always had a hard time around cats and dogs.  He said that he wasn’t happy to hear we had a dog BUT that he wouldn’t recommend getting rid of her at this time however once the dog dies to not get another one.  I can barely stay in a house for an hour without my asthma being triggered by cat dander.  I am just not meant to live with animals.

 

 

So that’s that.  Now to keep track of my symptoms, try to correlate them to an allergen and go from there.  No puzzle pieces are fitting just yet.

 

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Samples, samples, samples!! Try my product.

Posted on December 6, 2011 by Amie

Okay, so I am getting hits from spammers trying to get me to link to their sites and “fabulous” products for eczema sufferers.  Well, you have my attention.  My eczema hasn’t responded to anything other then tanning, that’s right no miracle cream or cure that I have tried has worked.  So, contact me and send me some samples.  I’ll try in out and post a review right here for better or for worst.

 

 

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“Dr. Y” – Fuck you!

Posted on May 21, 2011 by Amie

So, I finally had enough in February of 2011 and decided that I would try once again to see if a dermatologist could help me.  My family doctor was on maternity leave so I spoke with her replacement who quickly wrote me a referral.  I was open to giving this a chance and finding a doctor that would help me “manage” my condition (its chronic and not curable).  I was shocked to find out they got me into a doctor a few days short of 2 weeks from the referral.

The appointment was in a small town not to far from the Quebec/Ontario border.  The doctor is from Montreal and comes to the town on Wednesday to offer dermatological services to Ontario patient.  Sounds kinda like a dream, eh?

Here is how the experience went down:  I found the clinic no problem and besides the lack of parking which was annoying I was optimistic this was going to be a great appointment.  I walk into the clinic to find 30 or more people in the waiting room (and out into the hallway).  Apparently, it is also the local dermatology walk-in clinic whereby as soon as you have a referral you can “stop in” anytime during business hours to see Dr. Y.  Talk about a money grab.

Anyways, I make my way to the counter and present my health card.  The receptionist proceeds to tell me that my appointment was canceled and rescheduled for in a months time.  After informing her that this was news to me (why would I be well over an hour away from home for a canceled appointment?), she told me not to worry as she could fit me in (easy to do for a walk in clinic, I guess).  And so the waiting began.

45 minutes later I was called into the clinic and escorted into an exam room.  Waited another 15 minutes (or so) until Dr. Y walked in.  He was an older guy who walked in with a can of nitrogen gas ready to freeze off a wart or something.  But alas, he gets me the chronic eczema patient.  He quickly looked at my hands and legs but never wanted to see the rest of me (yup, no hospital gown this time), he huffs and sits down in the chair across from me.  He asks the usual questions… and diagnosed me with hereditary eczema and anxiety.  Yup, anxiety.  This dermatologist is apparently also a shrink.  I asked what he meant by anxiety and he qualified it with anxiety is scratching.  So my eczema is itchy which causes me to itch it which equates itself to anxiety.  Jeez, that’s doc.

Now the “fun” part (or the fuck you part of this post).  I was 8 weeks pregnant at the time which changed everything about the appointment.  He told me that the cream (betaderm) I was told to use (sparingly albeit) would, “Give your baby a cleft palate”.  Being a biologist I asked for the studies behind this statement, he abruptly told me to “google it”.  Yeah, fuck you Dr. Y!  This was a hard pill to take as after 2 pregnancies I had never been told that this cream would/could give my baby a cleft palate.  Wow, what is a girl to do when her eczema is preventing her from working some days but she wants the best health for her baby?

Having undergone photoderm therapy when I was in high school I was hoping to get a referral to this type of treatment.  I asked about it, he said that it was available in Ottawa but that he didn’t know where.  I asked if he could find and get back to me.  His answer was, “no, but I can refer you to the clinic in MONTREAL” (which is over 2 hours away from my house, btw).  He wouldn’t even ask for me.

So, he explains that he cannot help me at this point and that I should use Lipikar Cream all the time and come back after 20 weeks if its still bad.  He wouldn’t even talk about what my options are in the future for management.  Wow!

Here are the answers to the other questions I had.

1) Are allergies (food/environmental) linked to my eczema?  Absolutely not!

2) For my severe eczema on my hand, are there any other gloves I can use?  No, not that I know of.  When I asked if he could look in it, he said he would not.  (F-you!)

Now for the aftermath:  I cried the whole drive home.  Leaving with the name of a moisturizer (hoot!) and being told I had given my baby a cleft palate.  This idea was stupid and I was defeated.

But alas, I am not one who stands for bad service.  After all of the stupidity I had just gone through with this appointment the lasting impression for me was that this doctor comes to Ontario from Quebec.  He takes MY tax payer dollars but cannot refer me locally for other dermatological services (ie: the photoderm treatments).  Seriously?   So, I decided that I needed to do something.  Not only for me but for others who face this jerk.

I wrote a letter to the Ontario Minister of Health and Long Term Care, Deb Matthews with copies to my doctor and to Dr. Y.  My letter was forwarded from Deb Matthews’ office to the actual Ministry for consideration.  I’ve never heard back.  I did hear back quickly from my doctors office who referred me to another clinic in Ottawa.

With this guy around, no wonder I have no faith in Dermatologist.

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Thank you Photoderm clinic!!

Posted on May 17, 2011 by Amie

With all the struggles of the last year or so with trying to get “someone” to actually give me the time of day when it comes to treatment options for my eczema; I think I have finally met my match.

After two months of waiting I was able to see a dermatologist at the Bruyere Continuing Care Center in Ottawa; its a photoderm clinic just like what I had requested back in Sept 2010 but didn’t get referred to until early March 2011.  The treatment offers exposure to mid-range UVB light, the range that photo responsive skin conditions respond to.  Cool, eh?  You start at 10 second and move up in 10 second increments each time  until you get up to a couple of minutes, starting at 3-5 times a week!!

Since I am  6 months pregnant I am going back for a follow up in 3 months to decide if this is the route I want to go with my eczema management.  Its a treatment I used about 12 years ago during high school with decent results.  It’s time consuming though involving many trips into the clinic for treatment, you need to be dedicated to see results.

One of the reasons I liked this clinic was the fact the doctor actually took his time and talked to me (and my husband) about my eczema.  I wasn’t brushed off with the usual “familial hereditary eczema; here is a cream for that”.  He actually “looked” at my skin, like pretty much everywhere which may sound gross but seriously how can you treat a skin condition without seeing the skin?  He took notes, asked follow up questions and he even recommended other dermatologist who specialize in what I have.  So different then what I have experienced in the recent past.  How refreshing.

I haven’t blogged about this yet but I have been going indoor tanning since March 23 this year (so not even 2 months) and it is unbelievable how well my eczema is looking.  It has cleared up on my legs, arms and neck but my hand still cause me some issues but they are WAY more manageable.  I am sold on indoor tanning for MY eczema treatment.  The dermatologist today actually said that it is something I “should” continue doing if it is working.  Of course, he mentioned the “small” risk of cancer but he also acknowledged that the UVB treatment has the same risk.  Everything is risk/benefit and if you have eczema like I do, its a very small risk to a huge benefit.  For the record, tanning while pregnant has  never fully been studied regarding safety but there is lots of hype out there based on fear not facts.  The main thing my doctor and midwife have said is don’t overheat and stay comfortable (laying flat on your back can be uncomfy in the later months).  So far, I’ve been doing max 10 minutes, so I don’t have a chance to become uncomfortable.

TRY TANNING!!!!

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Body Image keeps me on the sidelines…..

Posted on April 9, 2011 by Amie

I hate this condition…. HATE!!!

My youngest child is taking parent and tot swimming.  Yup,I signed us up with the intention of being the one to help out.  But alas… I am self conscious and disgusting.  How can a don a bathing suit and swim?  I can’t, so my husband gets all the fun.

I hate it!!!

My youngest even asked me today, “Mommy, can you come in to swim with me?”… breaks my heart but I just can’t do it.  I am gross.

Now I know what those kids with insane acne felt like in junior high.

Here is what my leg looked like today.  I would stare if I saw me.

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