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
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

Life with rheumatoid arthritis can be a living anatomy lesson - and next time I think I’d rather take an anatomy class!!

Read more at RheumatoidArthritis.net!

Friday, July 7, 2017

Facing Forward: Jayne


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: 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.