Read more at RheumatoidArthritis.net.
Monday, July 31, 2017
Can Eating Fish Help Reduce RA Disease Activity?
Read more at RheumatoidArthritis.net.
Friday, July 28, 2017
Facing Forward: Lisa
Facing
Forward is a series that shares the lives of people living with arthritis
and other invisible chronic illnesses. The goal of the series is to see how we
are similar and how we are different - and to remind us to keep moving forward
because we aren't alone!
Name: Lisa
Location: Massachusetts
Diagnoses: Migraine, Fibromyalgia
Age at Diagnoses: late 20s
How are you currently treating your conditions?
At
the moment, mainly by lifestyle changes. I made sure I get regular sleep (when
possible), exercise, and eat in moderation. I have abortive medications I can
take when I get a migraine attack. I also see a chiropractor, wear tinted
lenses (called Theraspecs) when I’m in a lighting situation that can trigger a
migraine, and I keep informed of the latest research. My fibromyalgia (which
may or may not be the correct diagnosis) is mainly fatigue-based and I haven’t
found much to help that, but luckily it’s not constant and the best thing to do
for a flare is to sleep until I feel better.
What are the biggest challenges you have faced since
your diagnosis?
For
migraine, the biggest challenge was lowering the frequency and intensity of my
migraine attacks. It took many different health professionals, treatments, and
most of all, time. It took an emotional toll on me, as it was shocking to go
from being in a state of health to a state of disability—it happened very
quickly after my diagnosis. It was a challenge to keep my identity intact and
not just become my illness. I feel like I lost myself for a little while, but
it wasn’t permanent and all in all was a way to grow and learn about myself.
What are your favorite tips and tricks for managing
everyday tasks?
I
don’t always take my own advice, but I’ve found it beneficial to not cram
something in every moment of the day and to be kind to myself if I don’t get it
all done. For me, a minimalistic lifestyle has helped the most. I tend to keep
things as simple as possible. One example is my wardrobe. I only keep clothes
that fit me and look good and I own maybe about 30 items including shoes. With
less choice to worry about every morning it’s less “spoons” spent on going
through my day. For example, I belong to a networking group that meets weekly.
I have three business outfits I wear for it and I rotate them out. No one has
ever noticed or cared. I am well-dressed, and I don’t have to think about it.
How do you manage to keep facing forward every day?
I
found myself brought to tears the other day because I had to stay home from
work and a deluge of self-blame and guilt came on me. It’s hard when you’re not
feeling well to think rationally. However, I find the more rationally I can
approach a situation the better. I reminded myself of what I’ve done lately and
when I put it into perspective. I knew staying home would be a win-win, because
I could do my job better if I was more well-rested. When I thought about it in
a level-headed manner I knew I was being the most “productive” by giving my
body what it needs.
If you could go back to diagnosis day and tell your
past self one thing, what would it be?
With
migraine, I would explain to “past me” some of the nuances of treatment and
explain how bad the disease can get if not treated aggressively. I was hesitant
to take the medicine prescribed to me so my attacks were treated too late in
many cases. If I had treated them earlier it’s possible they may not have
spiraled out of control. With fibromyalgia, I would tell myself this isn’t my
new identity and doesn’t have to be my life. Many of the symptoms were a result
of being ill from migraine and have lessened over the years. I know that is not
the case with everyone with fibro, but either way it does not have to be
embraced as a new identity.
Do you have a blog you would like to share?
Yes,
you can find me on migraine.com (I am the
only contributor with the first name Lisa), and I also run a blog at youdecideproject.wordpress.com
that is an interactive novel and fundraiser for migraine research.
Would you like to be featured on Facing Forward? If
so, please send an email to mariah@fromthispointforward.com.
Tuesday, July 25, 2017
That Time I Did An Interview About Vibrators
I haven't seen all of Grace and Frankie, but the couple of episodes I have seen are pretty entertaining. In one episode, Grace (Jane Fonda) uses a vibrator that required so much effort she gives herself a case of carpel tunnel syndrome. Based on this experience, she collaborates with Frankie (Lily Tomlin) to design a vibrator that accommodates women with limited mobility, chronic pain, and rheumatoid arthritis.
Healthline wondered what real women with RA might have to say about a product like this - and I obligingly gave my two cents on the subject!!
Monday, July 24, 2017
The Importance of Addressing Pain and Fatigue
A new study suggests that it might be worthwhile for doctors to monitor
and address pain and fatigue in addition to and independently of disease
activity. Hopefully, more research will continue to take a
patient-centric approach to understanding the ways RA truly impacts us.
Friday, July 21, 2017
Facing Forward: Rick
Facing
Forward is a series that shares the lives of people living with arthritis
and other invisible chronic illnesses. The goal of the series is to see how we
are similar and how we are different - and to remind us to keep moving forward
because we aren't alone!
Name: Rick
Name: Rick
Diagnoses: type 1 diabetes, RA, AS
How
are you currently treating your condition?
I use an insulin pump, Continuous Glucose Monitor (CGM),
Rituxan for RA, medications to prevent diabetes complications, and Several
NASIDs for AS.
What
are the biggest challenges you have faced since your diagnosis?
I have had type 1 diabetes since 1974, and the biggest challenge has been mental, not physical.
The 24/7/365 nature of diabetes leads to mental health challenges. For me, the main issue has been depression.
With RA and AS the main issue has been the loss of the
ability to work. I loved my job, and when health prevented me from
continuing, I was devastated. For me, I had so much of my identity
wrapped up in what I did, that I lacked
direction and grounding when I stopped work.
What
are your favorite tips and tricks for managing everyday tasks?
I have to recall how fortunate I am every day. When
I was diagnosed with diabetes, I had no
expectation that I would live beyond 30-35 years. For that reason when I was told I had I
have RA, I understood how fortunate I was
to be alive and still working at age 43.
Certainly, my mother who passed at age 46 from
complications of type 1 diabetes after 23 years did not have the chance to be
diagnosed with RA. I ask myself when I am suffering from RA or AS, what
would my mom have given to have the opportunity to live as long as I
have? I imagine she would have given a lot.
How
do you manage to keep facing forward every day?
My
wife of 40 years keeps me going forward. But our sons and grandchildren
are my joy. Nothing beats grandchildren to keep a person facing forward.
When you are around kids who are active and laugh, you cannot help but
face forward.
If
you could go back to diagnosis day and tell your past self one thing, what would
it be?
If
I were to go back to me at age 17 when I was diagnosed with diabetes, I would tell
myself to get therapy sooner. I spent a long time and wasted many years
being afraid of and depressed about the complications of diabetes. During
treatment, in my 40s my life improved so
much. I wish I had not wasted the
time between my 20s and 40s.
With
RA, I would tell myself not to be afraid of powerful biologic
medications. It took me three years to inquire about the pain and
stiffness I was experiencing. With my first biologic medication, my
physical health improved amazingly. When people ask me what they should do, I always say get to your biologic as soon as possible.
Do
you have a blog you would like to share?
I
blog at RADiabetes and CreakyJoints. I also write occasionally at HealthCentral and for TUDiabetes. I also
host the annual RABlog week starting the last
Monday of September on RADiabetes.
Would you like
to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.
Friday, July 14, 2017
Rheumatology Network Articles
I was recently given the opportunity to write for Rheumatology Network. My assignments will include reporting on recent scientific studies about rheumatoid arthritis and other rheumatic diseases. Although these articles are intended primarily for a physician audience (and thus do get a bit technical and jargon-y) I know patients are also interested in scientific advances! So I still plan to share links to these articles on this blog. If you ever have additional questions about any of these articles please don't hesitate to let me know!!
Used with or separate from traditional measures, this tool can obtain a fast assessment of remission.
With adequate risk stratification in a reanalysis of PROMPT data, the preventative benefits of methotrexate became apparent.
Facing Forward: Sue
Facing
Forward is a series that shares the lives of people living with arthritis
and other invisible chronic illnesses. The goal of the series is to see how we
are similar and how we are different - and to remind us to keep moving forward
because we aren't alone!
Name: Sue
Location: Delaware (U.S.)
Diagnoses: ME/CFS and Lyme; both of my sons had ME/CFS also - one
recovered after 10 years & the other is still sick and also has 3 tick
infections.
Age at Diagnoses: I was 37 when I got sick; 38 when I got diagnosed. My sons
were 10 and 6 when they first got sick.
How are you currently treating your conditions?
I
have researched relentlessly to find treatments for ME/CFS, since there are no
officially recognized treatments in the medical community. I also went to see
(and took my sons to) some of the top ME/CFS doctors in the nation to learn
about various treatments. All of that has resulted in a large number of
separate treatments that we have found effective. In our experience, nothing
helps a lot, but each treatment helps a little and that adds up over time to
improved functionality and quality of life. My younger son is now fully
recovered, and my older son and I live fairly normal lives, which is quite
unusual with ME/CFS.
Briefly,
we treat Orthostatic Intolerance (OI), an integral part of ME/CFS, with
medications including Florinef and beta blockers, plus increasing fluid and
sodium intake and monitoring heart rate. We take medications (technically
tricyclic antidepressants but used in tiny doses and for different purpose) to
correct the sleep dysfunction that is a part of ME/CFS. We have helped to
normalize or rebalance our immune systems using inosine, low-dose naltrexone,
glutathione injections, and multiple herbal antifungals, antibacterials, and
antivirals. I also took prescription antivirals (alternating Valtrex and
Famvir) for about 5 years to treat underlying, reactivated viruses like EBV and
HHV-6. We have also treated methylation with folate supplements and B12
injections.
For
Lyme disease and other tick infections, we are under the care of an LLMD (a
Lyme specialist). We both took various antibiotics for over three years to
treat Lyme and bartonella but have both switched to the Byron White herbal
protocol in recent years, due to chronic yeast overgrowth (for which we now
both take prescription antifungals, in addition to loads of probiotics and herbals).
We have found the herbals to be surprisingly potent.
We
are also under the care of a brilliant dietician who also has a MS in
Biochemistry. She recommended a Paleo diet (no dairy, grains, or sugar), which
has been helpful to us. The Paleo diet helps with energy, methylation, reducing
inflammation, and helping to control our yeast overgrowth. She has also
recommended many supplements to us that we now take, for a wide variety of
purposes, including immune support, controlling yeast overgrowth, methylation
support, cognitive dysfunction (aka brain fog), energy, and more.
What are the biggest challenges you have faced since
your diagnosis?
Actually,
the biggest challenge was getting a diagnosis in the first place. I saw dozens
of doctors and had hundreds of blood tests over the course of a year, all while
I was completely debilitated, and no one could tell me what was wrong. I know I
am lucky - many people with ME/CFS go 5, 10, or even 15 years without an
accurate diagnosis, but that first year of uncertainty was horrible.
Since
my diagnosis, the first few years were the most challenging, especially two
years later when both of our sons also got ME/CFS. With three of us debilitated
and often homebound, we struggled with depression. We had no effective
treatments in those days, either.
One
challenge that continues now, 15 years later, is that my extended family
doesn't understand our illnesses. Most of them have stayed in patterns of
behavior that include denial and avoidance. That has been very hurtful and has
permanently damaged some of my relationships with them.
What are your favorite tips and tricks for managing
everyday tasks?
My
daily nap is sacred! Without it, I would feel awful by 4 pm every day. I nap
after lunch every day - no exceptions! - and that gives me the energy and
recovery I need to enjoy the evening.
It's
also critical to ask for help when you need it. I was fiercely independent, so
that was a hard lesson for me to learn. Now, if I wake up feeling awful, I call
it a Plan B day. Instead of forcing myself to do things I don't have the energy
for, I go through my list and consider what can be postponed and what I can ask
for help with. I'll text my husband to ask him to pick up something at the
store, for instance.
For
anything active, I wear my heart rate monitor - it helps me to stay within my
limits to prevent post-exertional crashes.
How do you manage to keep facing forward every day?
I'm
a naturally positive and optimistic person, so moving forward each day comes
easily for me, but I have learned a lot of important lessons through living
with chronic illness.
I
learned to focus on small moments of joy every day by keeping a Joy Journal.
Things like sitting on my back deck, reading a good book, looking up at the
clouds, or listening to the birds in the trees bring me joy. I have tried to
pass this onto my sons.
Going
through these challenges together has brought us closer as a family. Though our
sons are now grown and in college, we remain very close and enjoy each other's
company.
Helping
others has also been a big part of the healing process for me and for our
family. I started a local support group for families whose kids have ME/CFS,
fibro, Lyme, and related conditions, as well as a Facebook group for parents
and another one for teens. All of these groups have not only helped others -
which feels good and makes our own struggles feel worthwhile - but have also
provided support and friendship to me, my husband, and our sons.
If you could go back to diagnosis day and tell your
past self one thing, what would it be?
Tough
question, since there are still no miracle cures or amazing treatments for
ME/CFS. I'm not sure I could have gotten to where I am today without going
through the challenges I did. I think I did all the right things after my
diagnosis - read everything I could about my disease, searched for others in
similar circumstances, and tried every treatment I could find.
I
guess I might tell myself that I needed to balance acceptance and hope -
accepting my current situation while still holding out hope for a better
future. I did eventually learn that. I think I had to go through some of the
struggles to get to the point where I appreciate what I have and can help other
people.
Do you have a blog you would like to share?
Living
with ME/CFS
My
blog features posts on effective treatments for ME/CFS and Lyme, updates on the
latest research, posts on our experiences, and inspirational/coping posts, as
well as fun stuff like movie and TV reviews.
Also,
if you are a parent of a child with ME/CFS, FM, Lyme, EDS, or related
conditions, you are welcome to join our Facebook group - watch for a FB message
after requesting to join because that's how we confirm membership:
Would you like to be featured on Facing Forward? If
so, please send an email to mariah@fromthispointforward.com.
Monday, July 10, 2017
Life with Rheumatoid Arthritis: A Living Anatomy Lesson
Read more at RheumatoidArthritis.net!
Friday, July 7, 2017
Facing Forward: Jayne
Name: Jayne
Location: Australia
Diagnoses: Dysautonomia
and HEDS (Hypermobility Ehlers Danlos Syndrome)
Age at Diagnoses: 44
and 45
How are you currently treating your conditions?
Medication wise – I am on beta blockers 3 times a day
and midodrine. I have also recently started taking sertraline to try to
even out my blood pressure issues. I take a sleeping tablet most nights.
I also take Vit D, Magnesium, and Vit C daily for my muscle issues and Mobic
when I get joint pain that endures. Diet wise I drink salted water every
day and have salt on pretty much everything! I do not drink
alcohol. I drink decaffeinated coffee and tea since caffeine interferes
with my adrenaline issues. I do gentle exercise – I haven’t been able to do
cardio despite trying for a period of 6 months. My cardiologist believes
my adrenaline issues cause my bp and heart rate to drop, which makes sense in
terms of why I feel extremely fatigued after a lap in the pool! High
intensity exercise also exacerbated my adrenaline issues making me a lot more
jittery generally and prone to adrenaline related symptoms. Since giving
up cardio exercise, everything has calmed down a lot.
I’m unable to sit or stand for long periods since my
blood pressure drops a lot and I cannot talk for more than an hour either since
I get the same reaction. So I have had to limit my work to about 25% of
what I managed prior to getting sick and get creative on what I can do. I
now spend a lot more time at home because of my lower work capacity and
inability to socialize but my body is steadier and I get to spend a lot more
time with the people that matter to me! Having a steady body definitely
helps with a steady mind – overall I feel calmer than I have in a long time.
Sleep remains an issue for me. Due to my
adrenaline issues I am a prolific dreamer (and nightmarer – yes, I see
monsters!) and I suffer greatly from additional fatigue if I haven’t slept well
which is often. Sleeping is something that is an ongoing battle for me.
It helps if my day prior has been calmer – I definitely see a relationship with
the quality of my sleep and how busy I’ve been in the run up to it. I
also wake up every day with varying degrees of headaches/migraines – sometimes
they go, sometimes they don’t but again there is a relationship here with how
much I did the previous day.
Having an adrenaline problem makes my condition a
little tricky to manage. Adrenaline revs you up to do more but I get
payback big time if I overdo. I try to live my life in what I call “the
middle zone” so I don’t poke the bear! It isn’t always easy to get it
right.
What are the biggest challenges you have faced since
your diagnosis?
I think one of the biggest
ones has been work. Up until I got sick, I was the major breadwinner.
Adjusting to living on a lower wage and finding things that I can physically do
has been really challenging. Getting people I work with to understand what
I can and can’t do has also been challenging – many a time I’ve become over-committed
because someone inadvertently thought I could do it (either because they
thought that I used to do these things or they think it’s an easy task).
As time has moved on and they’ve seen the impact of those actions, those
expectations have changed which is good. I did have an income protection
policy that was meant to support us should I find myself in this position but
that was withdrawn a year ago and I’ve had to get a lawyer to help fight for it
to be reinstated. None of that has helped our financial position.
We’ve had to move to a smaller house, move the kids to new schools. The
work I now do is ad-hoc and largely freelance – it’s nice work but I earn about
a quarter of what I used to bring home and it’s not regular income. We’re
surviving but things were meant to have been easier when faced with this sort of
predicament – particularly in terms of the planning I did with having an
insurance policy as a backstop. Getting sick is never easy, let alone
with financial issues laid over the top. It’s been a big adjustment all
round.
Socially it’s also been very challenging.
People don’t understand the drain that social events take on those with chronic
illness and they still want to see you. But it’s not been possible to
keep up with the pace of those and, having declined quite a few, the invites
slowly stop coming! Which in one way is a good thing but in other ways a bad
thing. It comes with the guilt that you can’t see people as much as you’d
like. It’s a really hard one to juggle.
What are your favorite tips and tricks for managing
everyday tasks?
Rest!! Listen to your body and don’t overload
yourself. Take regular breaks and back off doing too much. Know
your limits! Mine is working up to 2 hours per day quietly from home or a
1-hour talking meeting/socializing. Any more than that and I have
overdone it!
How do you manage to keep facing forward every day?
I think despite everything we’ve gone through as a
family over the last 3 years of my illness, we’ve become a lot closer. I
am more present at home. Our pace of life is slower and calmer. Which
mentally has helped adjust to this new life I now live. I’m lucky in that
my medication also helps many of symptoms. This and pacing myself means I
only experience the odd day or part of a day where I feel dreadful. I
know that I bounce back. I don’t dwell on what I used to be able to do –
what good does that do? I focus on what I can do and what the future
might hold. I have a few projects on the go that are about finding a
different way to work and earn an income. I’m excited by those.
If you could go back to diagnosis day and tell your
past self one thing, what would it be?
I would say don’t be persuaded by doctors that your
symptoms mean something that is inconceivable to you. For a good 12
months I was told what I had was anxiety and panic disorder and I believed
them. I believed everything I had done in the run up to my symptoms
appearing was overly stressful and was the reason for my predicament since I
was told that this was the reason. It wasn’t. Stress didn’t help
but it wasn’t what caused my body to malfunction overnight. A simple
visit to some hot outdoor springs did that. If something changes in your
body that is hard to explain, I encourage you to look back over the activities
you were doing in the run up to your symptoms. If I had done that it
would not have taken me 7 months to realize I was significantly heat intolerant
and had dysautonomia.
Do you have a blog you would like to share?
Yes my blog is www.thedailymanic.com. I write about how those with chronic
illness can live life better. What I write about is also relevant for
anyone wanting to slow down and escape the rat race, which effectively is what
I’ve had to do to manage this condition I have.
Would you like to be featured on Facing Forward? If
so, please send an email to mariah@fromthispointforward.com.
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