HepC BC
We don't look sick. That's rather
convenient sometimes, but it can be a drag, as well. When it
comes to work, for example, many of us find it hard to be able
to do our normal amount of work, due to fatigue or other problems.
Since we don't look sick, we have a hard time convincing our
employers of the fact.
What if our employer thinks we're not
really sick? That's where HeCSC may be able to help.
HeCSC, both local and national, is
willing to write letters to your employer, giving him or her information
about the disease and its common symptoms. A letter from your
doctor is another option. Once we recognise the problem, fatigue
and other symptoms, and identify it as something that needs a
solution, we may often be able to continue working, if our employer
is willing to make reasonable accommodations. One possibility
you might wish to discuss with your boss is getting time off for
things such as interferon treatment or for days you are extra-tired.
If you have a job that requires a great deal of physical activity,
at some point you may wish to find out about being transferred
to a more sedentary job. Another option to consider is working
from home. You may be able to work out something like job sharing.
The best thing for each of us is to
continue working for as long as possible. Not only does working
benefit us economically, but it also promotes emotional and physical
well being by confirming our place as contributing members of
society. (There are rumors in other parts of the Hep C world
that a person is a more favored organ recipient candidate, the
longer he/she remains a member of the work force.) However, when
it is no longer possible for us to work, we must believe that
we have the right and obligation to rest and take care of ourselves.
Joan Diemecke
Greetings from the Okanagan.
I was fortunate this month to do a
little more traveling and hear some more of the concerns of persons
infected with Hepatitis C. I know we have a gigantic task ahead
of us, when I contact the B.C. Center for Disease Control and
am told "there is no data to support hydrogen peroxide or
bleach killing the Hep C virus." I find it unreasonable
that we can access so much info on the Internet yet, our own B.C.
Center for Disease Control is not aware of any data to support
(or deny) some of the questions presented.
I was promised copies of what reports
they do have last Thursday, but as of the time of writing I had
still received nothing.
An interesting and very descriptive
book hit the press this month. It is called Living With Hepatitis
C: A Survivor's Guide by Gregory T. Everson, M.D. and Hedy Weinberg.
It supplies an interesting approach to this disease, and, as
it is the first of its kind, offers lots of interesting information.
Comments expressed about hydrogen peroxide killing or inactivating
Hepatitis C, or that liver biopsies do not hurt have been heard,
but, all in all, it is worth reading. A must for newly diagnosed!
If you have trouble getting it, it can be ordered directly from
the publisher at 1-800-367-2550.
I have been hearing horror stories
about individuals who are headed for the poor house paying bills
for Interferon. Please check out Schering Commitment to Care
at 1-800-521-7157. They help anyone who cannot afford to pay for
the treatment.
Roche/Roferon produces a newsletter
as an educational service for patients with chronic Hepatitis
C and their caregivers. It is a free subscription. For your
copy call 1-888-300-PATH.
Are you aware that any person who has
Hepatitis C should be immunized against Hepatitis A and Hepatitis
B? See your local health unit. Hep B shots are covered but you
will be responsible for the Hep A. Many have got the Hep A shots
covered as well by making lots of noise!!
You should also have an annual flu
shot. These are free to any persons suffering from chronic illness,
as well as to immediate family members. See your public health
for further information.
Do you suffer from brain fog? Lactulose
has been proven to help clear your thoughts. It works to clear
the ammonia from the colon, so it can not be reabsorbed in the
blood.
Do you suffer from itching? I have
had many tell me of the success they have found from using "Questran."
It is an orange powder that calms the itching and offers relief
from the inside out.
Well, it is complete, the first panel
of our Hepatitis C mural, "Hands Tell the Story"! It
will be displayed for the first time in Toronto at a press conference
at 10:00 am Friday, November 21st, 1997. This mural is awesome-6
x 15 feet, 90 squares containing red and yellow hands, joined
together to symbolically stop the spread of Hepatitis C. This
is the same day the Krever Report will be handed to the Government.
We have waited 3 long years to see the outcome of this report
and hope it will contain all the answers we have been waiting
for.
I will start the second mural and encourage
all infected persons to become a part of this message. My dream
would be to collect 300,000 hands from every infected Canadian
and proudly display the magnitude of the disease. Should you
want a square, an address, or further information, call Leslie
Gibbenhuck, P.O. Box 21058, Penticton, B.C. V2A 8K8, Phone (250)490-9054,
Fax (250) 490-0620.
If COMPENSATION (not to be confused
with litigation or class action) is to be discussed, who would
you like to represent you? This question has come to mind on many
occasions, and is something all transfused persons need to consider.
Who would best meet the needs of all-lawyers or an organization
or a combination of both?
Do you want the Hepatitis C Society
of Canada to actively negotiate on your behalf, or do you think
a new organization should be formed to represent B.C.? Do you
want representation by persons who will be affected by these compensation
decisions? Or do you have something else in mind? These are
questions which need your careful consideration and we need your
input. If you can let me know by mail or phone I will report
back to you in the next newsletter. I believe everyone should
have a say, so contact me as soon as possible. Something to think
about, until next month...
Stay positive, stay well.
Leslie
There is still some confusion between
being a Member in Good Standing of the Hepatitis C Society of
Canada and Subscribing to the hepcBC.bull, the BC Chapters News
Bulletin. The former costs $20.00 per year and together with
a completed New or Renewal Application Form is forwarded to the
Toronto Office and you will then receive the National Newsletter
plus an Income Tax Receipt. Our negotiating power carries more
weight the more paid up memberships we have. To help you remember
when it's time for Renewal on becoming a member, the expiry date
appears on your Newsletter label in the box marked N/Exp: If
it's blank, it means you are not a member in good standing.
If you subscribe to help get the hepcBC.bull
Newsletter out each month (not the National Newsletter) and have
forwarded a donation of $10.00 or more if you can afford it, the
expiry date appears in the BC/Exp: box of the label. We strive
to solicit donations to help carry on our work whether you subscribe
to the Newsletter or not. We do urge you to consider being a
member in good standing with the Society, and many thanks to you
who have become members and also subscribe to the hepcBC.bull
Newsletter.
Reminder:- Any change of address, phone
number or Postal Code, please let me, your phone contact (in Victoria)
or your Chapter Secretary (B.C.) know at your earliest. It saves
our meagre funds. Thanks.
Jim Lodge 386-8227 e-mail:-ut301@freenet.victoria.bc.ca
Vice-chairperson & Membership
Victoria Chapter HeCSC acknowledges
the personal donations, donations in kind and memorial donations
received to date, and the following for discounts, donations
of services, or equipment: Monk Office Supply. CFAX 1070 Radio,
and Apple Canada.
SUBSCRIPTION FORM
Please fill out include a check made
out to HeCSC - Victoria Chapter, Send to: Hepatitis C Society
of Canada Victoria Chapter 1611 Quadra St. Victoria, BC V8W 2L5
or FAX to: (250) 479-5290
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"I cannot afford to subscribe
at this time, but I would like to receive the newsletter. I am
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"I would like to make a donation
so that others may receive the newsletter without charge"_______[]
(A limited number of newsletters will
be available free of charge at the meetings, as well.)
by Michele Scarborough-Cruz
The CLF and the Vancouver HCV Support
Group will have a joint support group meeting at the Heather Pavilion,
VGH on level C in the Board Room on December 4 from 6:30-9:00
pm. This support group will be open to individuals with all types
of liver diseases and the information will be available for those
newly diagnosed and those with other specific questions. This
first meeting will focus on the group consensus as to how they
would like things structured. The facilitators will be Yvonne
Kwok, a nurse specializing in hepatitis; Audrey Ostaf, and Herb
Moeller, both formerly of the HeCSC Vancouver Chapter; and Guilda,
the Greater Vancouver Chapter's Chair of Patient Services. Speakers
will be invited once a quarter beginning January 1.
March is "Help Fight Liver Disease
Month" and we are still looking for volunteers to help in
both the public and corporate portions of the campaign. The more
individuals we have promoting an awareness of the CLF and liver
disease, the more support we will be able to provide in building
long lasting educational programs and support in the endeavors
of the research which really needs our dollars. Volunteer training
for both components of the March campaign will commence as follows:
1. February 21-
AM-Public Venue Volunteer Training.
PM-Corporate Volunteer Training
2. February 28-
AM-Public Venue Volunteer Training.
PM-Corporate Volunteer Training
We are also looking for volunteers
who would like to become trained speakers, to educate the public
about liver disease and the issues facing BC communities. These
individuals do not have to have had prior experience as we will
be training those volunteers for these types of positions.
The Living with Liver Disease Program:
Vancouver General Hospital, 7-9 pm every Monday beginning January
28, 1998- 8 sessions
The very successful Living with Liver
Disease Program is now going into its second year and has made
great progress. Topic additions are still being made at the request
of patients who hav previously attended and it looks like the
'98 program will be bigger and better than ever. In 1998 the
program will take a look at the liver, its functions, its diseases
and treatments. We will also have a seminar on viral hepatitis
and treatments and research will be included here as well. Drug
therapy will make up another session in combination with research
methods and we will still include topics on nutrition, diet, alternative
therapies, psychological aspects of illness and other related
topics.
Victoria Chapter Meetings: Last Wednesday
of each month 1 - 3 PM, and again at 7-9 PM, St. John the Divine
Church Lounge,1611 Quadra St. (Entrance through the rear, marked
Annex)
NEXT MEETING: NOTE: Dec. 17th.
Kelowna Chapter Meetings: Last Saturday
of every month, 1-3 PM, Rose Avenue Education Room in Kelowna
General Hospital. ]
NEXT MEETING: NOTE: Jan. 31st
Vancouver Chapter Meetings: Vancouver
Chapter Meetings: Second Thursday of every month, 7:30pm, 5745
Wales Street, at the First Lutheran Church, Vancouver. (between
Nanaimo & 42nd on Wales Street)
Penticton Chapter Meetings: Third
Thursday of every month, 7-9 PM, Penticton Health Unit - Board
rooms.
NEXT MEETING: Dec. 18th
Kelowna Chapter Meetings: Last Saturday
of every month, 1-3 PM, Rose Avenue Education Room in Kelowna
General Hospital.
NEXT MEETING: Dec. 27th
Nanaimo Chapter Meetings: Second Thursday
of every month, 7 PM, Health Unit-Central Vancouver Island, 1665
Grant St.
NEXT MEETING: Dec. 11th
Vancouver Support Group Meeting on
Dec 4th, 1997 from 6 to 9 PM Heather Pavillion, C Floor - Board
Room. Please enter off Heather Street.
HOW TO REACH US:
CO-EDITORS
Joan Diemecke TEL&FAX:(250) 479-5290
pdiemecke@compuserve.com Darlene Morrow FAX:(604)
987-7396 hepcbc@sprint.ca VICTORIA CHAPTER OFFICE: TEL:388-4311
xx204@freenet.victoria.bc.ca
PENTICTON CHAPTER: LESLIE GIBBENHUCK
TEL:490-9054 bchepc@bc.sympatico.ca
KELOWNA CHAPTER: ELAINE RISELY
TEL:768-3573 eriseley@bcinternet.com
CASTLEGAR/GRAND FORKS/TRAIL: ROBIN
TOMLIN TEL:365-6137
NALA PAQU CHAPTERS: RIA KLOMP
TEL:248-6072
(Parksville) TED KILLOUG
TEL:752-1718 (Qualicum Beach) gjones@qb.island.net
(Gary Joneson) HELEN HUBBART TEL:245-8759
(Ladysmith/Nanaimo)
DISCLAIMER: HeCSS cannot endorse any
physician, product or treatment. Any guests invited to our group
to speak, do so to add to our information only. What they say
should not necessarily be considered medical advice, unless they
are medical doctors. The information you receive may help you
make an informed decision. Please consult with your health practitioner
before considering any therapy or therapy protocol. The opinions
expressed in this newsletter are not necessarily those of the
organization.
The deadline for any contributions to the next issue of hepc.bull is Dec. 22nd. Please contact: Joan Diemecke at Tel/FAX (250) 479- 5290 or Darlene Morrow at FAX (604) 987-7396 1203 Plateau Drive, North Vancouver, BC, V7P 2J3
email: pdiemecke@compuserve.com or hepcbc@sprint.ca
The editors reserve the right to edit
and cut articles in the interest of space.
ADVERTISING: The deadline for placing
advertisements in the hepcBC.bull is the 15th of each month.
Rates are as follows: Newsletter Ads: $10 for 1/6th page, per
issue $100 for 1/6th page, 12 issues (in advance) $20 for 1/3rd
page, per issue (vertical or horizontal) $200 for 1/6th page,
12 issues (in advance) whole page: $60 per issue $600 for 12 issues
1/2 page: $30 per issue $300 for 12 issues
ADVOCACY
ANNOUNCEMENT CLASS ACTION SUITS:
BRITISH COLUMBIA
Camp Church and Associates Sharon Matthews
/ Kim Graham 4th Floor, Randall Building Vancouver, B.C. V6B 1Z5
1-800-689-2322
Lemer Kambas Bruce Lemer Suite 1550,625
Howe Street Vancouver, B.C. V6C 2T6 (604) 669-4004
Before 1986 and after 1990 Klein Lyons
David A Klein 805 West Broadway, Suite 500 Vancouver, B.C. V5Z
1K1 (604)874-7171 (604)874-7180 (FAX)
also:
Dempster, Dermody, Riley and Buntain
William Dermody 4 Hughson Street South, 2nd Floor Hamilton, Ontario
L8N 3Z1 (905) 572- 6688
The toll free number to get you in
touch with the Hepatitis C Counsel is 1-(800)-229-LEAD (5323).
This information is for anyone who
has received blood transfusions in Canada, if they wish to find
out if their donors were Hep C positive. TRACEBACK INQUIRIES
Contact: Dr. Lisa Jeppesen, Dr. P Doyle,
or Glenda The Canadian Red Cross Society 4750 Oak Street Vancouver,
BC, V6H 2N9 1-888-332-5663 (local 207)
This column is a response to requests
for a personal classified section in our news bulletin. Here
is how it works: To place an ad: Write it up! Max. 50 words.
Deadline is the 15th of each month and the ad will run for two
months. We'd like a $10 donation, if you can afford it. Send
checks payable to HeCSC Victoria Chapter, and mail to R. Hicks,
Box 263-453 Head St., Victoria, BC V9A 5S1. Give us your name,
tel. no., and address. To respond to an ad: Place your written
response in a separate, sealed envelope with nothing on it but
the number from the top left corner of the ad to which you are
responding. Put that envelope inside a second one, along with
your check for a donation of $2, if you can afford it. Mail to
the same address as above.
Disclaimer: R. Hicks and/or HeCSC
cannot be held responsible for any interaction between parties
brought about by this column.
Ad No. 5
SWM 7/7/47. Employed. Healthy. 5'8
1/2", 170 lbs. Considered attractive. Spiritual. Dreamworker.
Tai Chi. Mindful/Awareness-Meditation. Vegetarian. Seven
years sober and celibate. No assets. Poor but happy! Trained
caregiver. I do not expect you to be like me. Be yourself.
Reach out. Seeking Soulmate/Lover.
____________________
Disability: Running the Gauntlet
Fortunately, disability is not something
that the majority of people with hepatitis C have to think about.
Most cases of Hep C are asymptomatic, and/or many of us have
just not progressed-and may never progress-to a state where our
liver disease disables us. But the harsh reality is that hepatitis
C is and can be a disabling disease.
My own Story
In 1994, I used to teach at a university,
read and write really complicated stuff, do recreational triathlons
(i.e., run 5 miles uphill in 40 minutes, or bicycle 30km an hour,
etc.), body build, zoom about all day if I had to, and then spend
the evenings designing some fantastic meal or plunging into some
complicated discussion into the wee hours of the morning. Not
exactly a party animal-but close. Now?? No More!! Nada!! Nulto!!
Non! Zilch!! Gone forever. I began to get so sick and woozy that
sometimes I would get lost on streets that I knew like the back
of my hand. I would need to ask people to help me get home because
I felt like I had to just lie down on the sidewalk and curl up.
I was too dizzy and frightened to ride a bicycle-cuz there was
no guarantee if I made it somewhere, that I could make it back.
My attacks of what I call wooze (which included dry mouth, aching
upper back muscles, noticeable pain in the upper abdomen, disorientation,
itchiness all over my body, blurry vision, diminished hearing
and general disorientation and the feeling that my blood had turned
to thick mud), but which doctors label "Fatigue," continued
to worsen. For me, the worst part was the unpredictable nature
of the attacks. I never knew when they would happen. So, for
instance, I might feel good for two weeks, and then when I was
ready to go grocery shopping, or do my weekly cooking, I would
just collapse. I could not guarantee my employer that I would
be able to honour my teaching contracts (I did "faint"
at work 3 times, and scared the heck out of my students and colleagues),
or that I would be able to grade papers, or that I would be able
to drive home. I was really lucky. I had really good friends
who were there for me and would help me shop, or bring me over
stuff to put in the microwave that I bought when I realised that
I was losing the ability to cook for myself. The most important
thing was that they believed in me-because the medical profession
didn't. And the more I continued on down the path to dysfunctionality,
the medical profession, in general, accused me of making it all
up: basically, their position was that, yes, I had Hep C, but
the symptoms I had were caused by my weird and overburdened brain.
In a nutshell, I was a liar and a fraud. My friends, many of
whom, being professors and artists, and so forth, were very well
respected, wrote letters on my behalf to the provincial government,
which had (since I could no longer work) put me on a type of temporary
medical welfare. The problem with this type of assistance, however,
was that I had to do a lot of running around, fill in many many
forms, and was always being cut-off without warning, and for no
explicable reason. I also had letters from my neighbours and
friends at the local Y, who knew me and my love of sports and
who had participated with me in various "fun-runs" and
other fund-raising events. I had a letter from the chair of the
department where I taught at a prestigious university-13 letters
in all-but the medical welfare board refused to read them and
denied me a more permanent medical disability status, to the amazement
of everyone who knew me! Now don't get me wrong: If I could wake
up tomorrow feeling great, or at least 50% better than I do when
I get heppy, I'd be working at 2 jobs yesterday. I love to work,
and I am often ashamed that I am unable to guarantee my reliability-but
more on this later. So: we went to appeal. Now the funny thing
is that my own hepatologist clearly stated on one of the government
forms that my illness was permanent, irreversible, and that my
fatigue was debilitating. These were her words; she's a big name
hepatologist back east, and nobody twisted her arm. But, the
disability review board doctors ignored her analysis. I didn't
know this at the time, but the people at HQ for the HeCSC told
me that roughly 80% of all applications for disability are rejected
first time around. Now my hepatologist is a busy lady. She is
running around 14 hours a day doing liver transplants and lots
of other really serious stuff-so filling in the same form 3 times
for nothing is not something she likes to do. Besides which,
she had already told them. In the end, after almost 3 years, 2
appeals, 13 letters, and many forms, I was granted a small federal
disability that nobody could really live on-but finally, and this
is the big point for me, I didn't have to cope with the accusations
that it was all in my head. Whoopee-doo! Some victory! I mean
it's nothing to be congratulated on-know what I mean? Now I'm
disabled-for real!! But guess what? It didn't end there, no siree!
Now because my federal pension was so small, I was granted a
top-up by the provincial government, which was not enough to live
on, and if not for friends and a very resourceful social worker
(Thank you Sylvie J ) I would not have been able to eat or afford
to live anywhere. Sylvie got me into subsidised housing (actually,
it was a partial-care residence for seniors; I was placed there
because, believe it or not, I actually was too sick at that time
to take care of myself). Suffice it to say, these events only
made me more ill. When it was all settled, I moved to BC, had
to forfeit my provincial subsidies and was really worried about
getting caught on another merry-go-round. Well, sumbuddy upstairs
must luv me, cuz, the provincial disability people here, and the
doctors I saw here, and the people at the Hep C office here all
helped me through the process as quickly as possible. I'm still
waiting for my own housing; but I can eat and live with a great
measure of dignity-which, when you're feeling rilly crappy and
facing your own mortality, is a rilly important thing to have.
Talk atcha later Squeeky
BTW: if any of you have questions
about or problems with disability, don't forget to call us. After
all, that's what we're here for.
HepC BC