Friday, January 27, 2017

Facing Forward: Emma

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: Emma
Location: United Kingdom
Diagnoses: Ehlers Danlos Syndrome Hypermobility, Postural orthostatic Tachycardia syndrome
Age at Diagnosis: 37 years

How are you currently treating your condition?
I am receiving private physiotherapy on a weekly basis both on land and in the pool, which is essential to strengthen my muscles as our ligaments and tendons are too stretchy to hold the joints. I use painkillers only when really severe as in a subluxation or injury. I try to manage as best as I can with natural methods like heat packs, meditation, relaxation, and supported rest.
 
What are the biggest challenges you have faced since your diagnosis?
Having to explain to people the nature of my condition and how it changes from one day to the next, making it very difficult to make plans, especially with friends. There is still a lack of awareness of my condition amongst the medical profession.

What are your favorite tips and tricks for managing everyday tasks?
I don't have any tricks but my tips would be to make sure you pace everything. This is so important when managing a chronic condition. And to make sure you have supported rest breaks, where your whole body is properly supported to allow the muscles to relax. This is especially important in EDS. 

How do you manage to keep facing forward every day?
I have a very supportive family who encourage me in any way they can to keep fighting. I also have a great friend who is very supportive and I try to meditate every day. 

Do you have a blog you would like to share?
My blog is about my journey living with Ehlers Danlos syndrome.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Wednesday, January 25, 2017

RA Dietary Supplement Use Questionnaire

I know I've written about this quite a few times in the past, but here we go again: the importance of research. Continuing research is so important for developing future treatment options and improving quality of life for people living with RA. 

I was recently contacted by a researcher at the the University of Arizona with a graduate degree in Nutritional Sciences who is working on a project to find out what medications, vitamins/minerals, botanical supplements, and food/diets people with RA use to manage their symptoms. The information will help researchers determine future research projects surrounding disease management, safety and efficacy of natural treatments/supplements, and potential interactions between medications and supplements. 

She has put together a survey that is competently anonymous and only takes a few minutes to answer - I just did it myself! If you are willing to take a moment to contribute to this research, please click here.  


TNF Inhibitor Use in Pregnancy & Breastfeeding

When I first started thinking about becoming a mom after being diagnosed with rheumatoid arthritis, one of the biggest challenges was figuring out my options for keeping my RA under control while pregnant and breastfeeding.

Friday, January 20, 2017

Facing Forward: Lori-Ann

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:  Lori-Ann
Location:  Dallas, Texas
Diagnoses: Psoriasis / Psoriatic Arthritis / Ehlers-Danlos Syndrome
Age at Diagnosis: 44

How are you currently treating your condition?
Immunosuppression therapy, chemotherapy, topical steroids, pain killers, diet, & physical therapy.
 
What are the biggest challenges you have faced since your diagnosis?
The unpredictability of good days and bad days, navigating the city with limited mobility.

What are your favorite tips and tricks for managing everyday tasks?
Meditation, stretching, taking frequent breaks (no one says you have to make the bed all at once), and if all else fails, let someone else help you.  Injury is not worth it.

How do you manage to keep facing forward every day?
I am a naturally bubbly person, but when I am feeling particularly useless, I look at photos of my diseases on the internet.  Someone else always has it worse.  It reminds me to be grateful, anyway.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Do not panic.  You have more control than you think you do.

Do you have a blog you would like to share?
City Girl Flare

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Friday, January 13, 2017

Facing Forward: Suzanne

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: Suzanne
Location: Dublin, Ireland
Diagnoses: Rheumatoid Arthritis, Fibromyalgia, Barretts Esophagus, Endometriosis
Age at Diagnosis: RA & Fibro 42; BE 39; Endo 36

How are you currently treating your condition?
Plaquenil, Losec, low dose Naltrexone, CBD oil, Vimovo, Tramadol when required, Kefir, gluten free, dairy free, and low sugar diet. A relaxing bath in Epsom salts. Eat healthy and everything in moderation. Reduced alcohol, coffee, and processed foods intake drastically.
 
What are the biggest challenges you have faced since your diagnosis?
People's reactions, being judged, unable to carry out the simple tasks I always took for granted, being clumsy, difficulty exercising, weight gain, losing control of my life, being isolated socially by people I thought were friends, struggling with my mental health when in pain, losing my career, not being taken seriously anymore. Being told "it's just arthritis, lose a bit of weight and you won't be in pain."

What are your favorite tips and tricks for managing everyday tasks?
Make lists so you know what your everyday tasks are (fibro fog and forgetfullness have been quite the challenge since diagnosis.) Ask my husband to carry out the difficult things before he goes to work i.e. lifting heavy objects so I cam manage/use them. 

How do you manage to keep facing forward every day?
Giving myself a break, ditch perfectionism, enjoy the people who support you, allow people to help, believe that there will be better days and this too shall pass!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Take your time confiding in people. They won't always understand and some will walk away from you, but that's ok because if they aren't able to weather the storm then they're not worth investing any more energy in. It will be tough but there are supports out there. Value the people and things that really matter in your life because they will be of great support and enjoyment to you. Research everything and it's ok to question your doctor on medications, not everything works. 

Do you have a blog you would like to share?

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Monday, January 9, 2017

Help Advance Rheumatoid Arthritis Research

This post is sponsored by Acurian, a world leader in connecting people to local research studies.

It’s been more than eight years since my rheumatoid arthritis (RA) diagnosis, and today I’m very happy to have a treatment plan that is working well for me. It was a long and arduous process for me to get to this point, requiring me to try many medications including four different biologics. But, as difficult as it was for me to find a working treatment, none of it would have been possible at all without medical research.

While I’ve been personally lucky to find a working treatment, I know that is not the case for everyone living with RA – which is why continuing research is so important. Research studies are necessary for developing future treatment options, but research studies need volunteers in order to move forward.

Right now, rheumatologists are looking for people with RA to volunteer for local research studies. If you or a loved one have RA and have tried other treatments without success, joining a research study might be a good option to consider. Those who qualify may receive*

·       Payment, which varies by study, up to $625
·       No-cost study-related care from local doctors and specialists
·       No-cost study medication

To see if you qualify for a local RA research study, please visit: www.RAHealthandYou.com

In addition to the above benefits, you will also be helping to advance research for everyone living with RA. The more data that doctors and scientists have, the better treatment options can be developed. That’s the reason I joined a research study myself when I was pregnant with my second baby – so that future moms with RA would have better data and better options than I did. If we can continue to advance research, hopefully doctors and scientists can develop better treatment options for those of us living with RA.  

*In a clinical research study, the participants may receive investigational study product or may receive an inactive substance, or placebo, depending on the study design. Participants receive study-related care from a doctor/research team for the duration of the study. Reasonable payments will be made for participation and the length of the study may vary.

What Does Pain Actually Look Like?

In a person who has dealt with pain every day for the last ten years, I’d expect pain to have much less of an impact on how they behave. Maybe you wouldn’t even be able to tell that they were visibly in pain at all? 

Friday, January 6, 2017

Facing Forward: "Broken"

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:  I blog under "Broken"
Location:  I live in central Missouri, USA
Diagnoses: Hypertonic Pelvic Floor Dysfunction (I have no voluntary relaxation of muscles below the waste on my left side just under the ribs to just above my knee); Permanent Structural Damage to my Bladder (I can’t void without a catheter)
Age at Diagnosis: Hypertonic Pelvic Floor Dysfunction at 43; Permanent Structural Damage to my Bladder at 46

How are you currently treating your condition?
My Hypertonic Pelvic Floor Dysfunction is treated by internal vaginal physical therapy, biometric Estim physical therapy, trigger point injections into the Levator Ani, and pain medication. I spend a lot of time sitting on a heating pad because my butt always hurts or I take a really hot bath (my husband will boil water to add to the tub so it’s hot enough to release the tension.

The permanent structural damage to my bladder is from a neurological condition and not musculoskeletal and not associated with the pelvic floor dysfunction. I have urodynamic testing and cystoscopy. I have a 3 MRIs scheduled and the results of those tests will tell me what neurological disorder caused the structural damage and will allow the doctors to “see” the best place to insert an InterStem device which is basically a pacemaker for my bladder.

I was also diagnosed with arthritis at 13. As a child it affected my knees. As an adult it’s my hands. In the mornings I can’t even squeeze my toothpaste on my toothbrush or pour my own coffee. I’m good to go about an hour after I take my Celebrex for the rest of the day and has very little impact on my life; or I have so many other problems it’s not something I notice. I do drop things quite frequently, but I think that has more to do with left side muscle weakness than my arthritis.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have faced since my pelvic floor dysfunction was diagnosed has greatly affected my sex life as my physicians would prefer if I don’t participate in any type of penetrative activities. My spouse and I had a very active and healthy sexual relationship prior to this. It has been nearly 6 months since we’ve been able to engage in traditional sexual conduct. Coming up with ways to maintain that physical closeness so that both parties are comfortable, secure, and satisfied has been extremely challenging. 

The diagnosis on my bladder came totally out of left field. I was able to pee, then one day I couldn’t. I was expecting a simple diagnoses, like maybe I had a kidney stone stuck in my urethra. Something with an easy fix. Leaving the doctor’s office with catheters for use on an as needed basis rocked my world. I’ve had to learn how to use a catheter, which isn’t easy. It gets a little easier every time, but I haven’t quite managed to use one without making a mess. I’m now on an every 6 hour schedule. I’m hoping to be able to get the implant which will allow me to void my bladder organically because the InterStem will send electronic stimulation that will tell my brain it’s time to go; right now the condition has worsened to the point I can’t tell myself when my bladder needs to be emptied, hence the schedule.

What are your favorite tips and tricks for managing everyday tasks?
Managing hypertonic pelvic floor dysfunction is an ever changing condition. Some days my muscles are so weak, I need assistance getting out of bed and down our stairs and my pain level is through the roof. On those days I do only what’s necessary and possible. Other days, my pain level is low and I can manage to most tasks on my own. I have to avoid things like squatting and heavy lifting and being on my legs for long periods of time. Doing anything that will strain those muscles cause spasms that are painful. I have more good days than bad days on that score because I’ve started listening to my body and paying better attention to what It’s telling me. Occasionally the inguinal ligament will get jammed between my hip joint and socket and on those days I need the use of a walking aid until the pelvic floor relaxes enough to release it.

For the structural damage to my bladder, I have to set a timer to make sure I don’t miss a scheduled catheter time. The more the bladder fills and the longer it remains full causes further damage.

How do you manage to keep facing forward every day?
I have a great mental health care provider. I don’t like having to use a catheter in a public restroom and started suffering social anxiety and panic attacks. With the help of an anti depressant and some anti anxiety meds, I do pretty well mentally. I know eventually my pelvic floor muscles can be retrained to function properly. I still have plenty of room for improvement. I just have to maintain my therapy sessions and trigger point injection appointments. The doctors are looking for an answer on the structural bladder damage. They have indicated to me the level of and suddenness of the permanent structural damage to my bladder is typically seen with advance cases of patients with MS. So knowing there is an answer out there and I’m not being neglected by the medical care providers leaves me with a feeling of confidence I am in good hands.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My hypertonic pelvic floor dysfunction was misdiagnosed as sciatic nerve disorder for over 18 months. I would tell my past self to make sure the specialist examining me wasn’t embarrassed by a question relating to sex. When I asked my orthopedist if penetration is normally painful with someone who has a pinched nerve and he stammered and blushed, I should have immediately requested a second opinion. I would also tell my past self that emptying your bladder once every 12 hours is not normal and mention it to my physician earlier before the damage became permanent.

Do you have a blog you would like to share?
My blog address is https://www.afterrdarkk.com. I’ve also written an article for #ThatsNotAVagina which you can read here.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Thursday, January 5, 2017

“Treating Us Right: Lesbian, Gay, Bisexual, Transgender Considerations” at the 2016 American College of Rheumatology Annual Meeting

The 2015 ACR Annual Meeting was the first year to have a session specifically addressing the special medical needs and concerns of the LGBTQ patient population. Here's my review of the 2016 session.

Wednesday, January 4, 2017

Everyday Health: Best Rheumatoid Arthritis Reads of the Year

While my Facing Forward series doesn't focus only on individuals living with rheumatoid arthritis, I'm honored and excited that the series was recently recognized by Everyday Health as one of the Best Rheumatoid Arthritis Reads of the Year! 

I want to thank each and every person who has submitted their story to this series. At this point I've featured more than 70 individuals living with at least 80 different types of diagnoses! (If you haven't yet been featured and are interested, please send an email to mariah@fromthispointforward.com)

Check out the article (which also recognizes some of my other favorite bloggers!) here: Everyday Health: Best Rheumatoid Arthritis Reads of the Year