Friday, March 31, 2017

Facing Forward: Mandy

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:  Mandy
Location:  Savannah, GA
Diagnoses:Rheumatoid Arthritis, Central Sensitivity Syndrome (C.S.S.) with indications of Fibromyalgia & Chronic Pain Syndrome, and Dis-Embarquement Syndrome
Age at Diagnosis: 50

How are you currently treating your condition?
I am taking 200mg/day of Savella for fibromyalgia, 15mg Methotrexate for the RA, and 5-10mg prednisone to ease additional foot and hand pain caused by the RA. Other than this I try to manage my pain through a regular schedule and taking care to not overdue extracurricular activities. Daily gentle movement and stretches to keep the joints and muscles moving helps keep the pain at bay.
Avoiding inflammatory foods such as wheat and sugar is VERY helpful.
What are the biggest challenges you have faced since your diagnosis?
I am quite a social person and had been very active up to that point. Giving up these activities and learning to say "not this time" was extremely difficult for me. Thankfully, my husband is excellent at reminding me of the consequences of over activity. I do go out occasionally but try to keep that to once a week.

What are your favorite tips and tricks for managing everyday tasks?
1. Remember that the world will not stop if you don't get something done.
2. Allow others to be a blessing to you. Let them help. When they ask what they can do, give them a few options. Maybe make a list ahead of time of things they can do to help. Let them do things even if not really necessary. Maybe just ask them to come sit with you, watch a movie, play a game, have tea/coffee.

How do you manage to keep facing forward every day?
I have found things I can do that don't exert a lot of energy. I picked up crocheting again after many years. I can't count the afghans I have made for other shut-ins, babies, wedding gifts. And now am actually making some money making afghans for people. Blogging has been such good therapy for me. Writing about my pain has helped me deal with it and at the same time helps others understand what I am going through and what I am learning through it. These things keep my mind off the pain and gives me something to look forward to.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Enjoy every minute of your life, right where you are. Don't look to the past or what you hope happens in the future. Every day is a precious gift from God. Don't waste it.

Do you have a blog you would like to share?
I blog at Leaving a Legacy (GG stand for godly grandmother/girlfriend/guide). I also post about my crocheting at

Would you like to be featured on Facing Forward? If so, please send an email to  

Friday, March 24, 2017

How to Talk to Your Kids About Having a Chronic Illness

If there’s one word that parents likely hear about 600 times a day it’s this one: why? But while answering the never-ending stream of a kid’s questions is exhausting for anyone, the questions can be more complicated if you are a parent living with a chronic illness.

Why do you have to take that medicine? 
Why are you going to the doctor again?
Why can’t you play with me right now? 
My newest article for Mango Health has five ideas to help you navigate talking to your kids about your illness.

Facing Forward: Heidi

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: Heidi
Location:  Seattle, WA
Diagnoses: Rheumatoid Arthritis, two rare genetic muscle diseases (Autosomal Dominant Centronuclear Myopathy and Marie-Charcot-Tooth Disease) along with some “mysterious” GI, heart and neurological symptoms. I think they’re all related, but hey, what do I know?
Age at Diagnosis: 
39 and 42 respectively

How are you currently treating your condition?
There is no treatment for my genetic muscle diseases except to manage my neuropathy pain, which I do with gabapentin. As for RA, I started off with methotrexate injections and prednisone for flares. After about six months of losing my hair and no significant improvement in symptoms, I asked to try a biologic. I started out on Humira which worked marvelously for about three months, after which time my symptoms came roaring back. My doc then switched me to Enbrel. The same thing happened with this med, but I did give it a longer try.  After about a year of marginal results, my doctor tried me on Orencia. I’ve now been on Orencia for about a year with somewhat successful results. I’ve been able to keep my prednisone down to 10 mg/day for the most part and really only deal with significant flares when the weather changes or if I’m sick or fairly stressed. 
Besides medication, I started following the Whole30 diet on and off. Although I lost about 10 pounds during the first month, I didn’t see a significant change in RA symptoms. I did feel better, however, in a general sense, so I’ve tried to eliminate dairy, grains, and sugar from my diet permanently, although that’s been harder to do long term than I thought (especially as I stare down a box of Tagalongs girl scout cookies as I write this!) Finally, in the diet and medicine category, I just recently started taking high dose Vitamin D. Yes, I am deficient, which many people living in Seattle are, but that’s not why I take it. There is actually some really interesting research on using Vitamin D as a way to treat leaky gut, which, personally, I suspect as the reason for many of our autoimmune issues these days. As far as exercise goes, I’d love to say I do it, but I’d be lying. I use to be fairly active, running half marathons and ragnars, but no longer do so due to pain and fatigue. I was actually training for a ragnar when my knee began to hurt more than usual, which led to my RA diagnosis. I really miss running, so I try to get out a walk or hike as often as I can, especially during the summer. 
What are the biggest challenges you have faced since your diagnosis?
Hands down: fatigue. I have a pretty high pain tolerance, so I am able to push through it most of the time, but I have to say the fatigue has kicked my butt. I have to take a nap nearly every afternoon and sometimes in the morning too. This sometimes means coming home after dropping off my son at school and crawling back in bed for another hour or two. Even though I hate what this does to my productivity, doing so seems to “reset” my body, allowing me to get through the rest of the day. The other really frustrating challenge is my now horrible memory and brain fog. Losing 15 IQ points and literally failing the short-term section of my neuropsych evaluation was a huge blow to my ego. I’ve always prided myself on being smart and capable, so this issue was really hard to swallow. I’ve tried to make accommodations which have helped, but sometimes I still end of going to the store three times to get everything I need. 

What are your favorite tips and tricks for managing everyday tasks?
I try to give myself extra time, ask for help (which I never used to do), create lists, and I use a ton of ice and heat for pain. I also splurged and got myself a membership to Massage Envy.  Giving myself grace to rest when I need to also really helps. 

How do you manage to keep facing forward every day?

I like to make fun of myself. Keeping a sense of humor is very important! For instance, I have “Dory” sign in my house and an “I love Naps” t-shirt I wear often. I also find its important to have close friends to support me who truly understand chronic illness. I have a few friends who have issues themselves, so we support each other a lot. My faith, family and helping others also plays an important role in my well-being. To keep a sense of purpose, I work part-time as the women’s pastor at my church. In this role, I’m able to focus on supporting others in their pain and triumphs which helps take the focus off me and keeps things in perspective. I also keep my hands active (cuz my doc said I had too) by flipping furniture as my body allows. I find great satisfaction in this creative outlet and it brings in a little extra money too. This hobby has also turned into a design and faith blog called “Meaningful Home” which can be found at Here I explore ways to bring meaning and beauty into your life through home d├ęcor & design. Honestly, both these endeavors were not on my “career plan” whatsoever, but having them has been the life-giving inspiration I need to keep facing forward. Being useful through work is very important to me. Finally, I would be remiss if I didn’t mention how my son and husband keep me going. I couldn’t ask for a more supportive, amazing husband. He helps around the house a ton and puts up with my complaining when it gets out of hand sometimes. He is incredibly understanding! My son, Caleb, is the light of my life and the reason I keep looking forward to the future. He was a true gift from God and is my little prayer warrior. He is always praying for me! 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Ok, not one, but three things: 1) It’s going to be ok. 2) Be your own medical advocate. I can’t emphasize this enough. Doctors are humans too, they make mistakes and they don’t know everything. I’ve found that patient boards, conferences, and research have helped me diagnose and treat my conditions more successfully than without. 3) God can and will use this diagnosis for good if you let Him. 

Would you like to be featured on Facing Forward? If so, please send an email to  

Thursday, March 23, 2017

TOTAL March Madness!!

Maybe there's another reason they call this month "March Madness," because this month has been crazy busy!! Those of you who follow me on Facebook, Twitter, or Instagram may already know that I've been doing some really exciting things recently when it comes to advocacy! So before I leave on a two week trip with my family tomorrow, I wanted to give a quick update!

The month started out with a quick trip to Dallas, where I sat on a Patient Steering Advisory Board for Lilly, providing insight on potential new programs for RA patients. It's exciting to see pharmaceutical companies paying more attention to the patient voice, and hopefully being involved in this sort of thing can help improve things for all of us in the future. 

I flew straight from Dallas to Washington D.C. for the Arthritis Foundation Strategy & Impact Committee Meeting the following day. This committee reports to the Arthritis Foundation Board of Directors and we are charged with helping make sure the Arthritis Foundation's recent transition and re-branding results in a true outcome driven organization. We're working to make sure the Arthritis Foundation is having the greatest meaningful impact on individuals living with arthritis and their families, and I'm really honored to represent the voice of patients on this committee. 

I was able to stick around Washington D.C. for two more days to attend part of the Advocacy Summit. I always love the opportunity to connect with others who are living with RA - and it was great to get to see some of my favorite people! The advocacy goals this year were (1) to ask our Congresspeople to join the Congressional Arthritis Caucus, (2) to make sure the Department of Defense maintains funding for arthritis research, (3) and to ask our Congresspeople to safeguard our interests when it comes to drafting new healthcare legislation. 

In particular, we're concerned about what happens to people with pre-existing conditions, the possibility of lifetime caps on coverage, the ability of kids with JA to stay on their parent's insurance plans until they turn 26, and overall affordability of healthcare. Unfortunately, I didn't get to stay for all the meetings on the hill. (Remember my past life when I got a law degree and a masters in environmental policy? I had to get home to finish a book I've been working on!) But I did get get to meet with Colorado Senator Bennet - the day after the ACA replacement legislation was introduced, no less! So that was exciting. 

Last week, I turned my attention to legislation at the state level, as there was a step therapy bill being introduced in Colorado. Step therapy is a practice used by insurance companies that requires patients to try and "fail" lower-cost medications before the medication actually prescribed by their doctor will be approved. SB 17-203 set out to require an override for situations where the step drug is problematic for patients and also to protect patients from having to go through the step therapy process all over again if they have to change insurance plans. 

Since I recently experienced step therapy first hand, I went to testify at the Committee meeting at the state capitol in Denver. If you're interested, you can check out my op-ed for Cybermed News, which is basically the same argument I made in my testimony. Though the bill did pass through the Committee that day (and, in fact, passed through the Colorado Senate today) unfortunately some amendments were made that makes the bill less useful for the patients affected. But as the bill heads over to the House, patient organizations like the Arthritis Foundation and the Chronic Care Collaborative continue to fight for improvements. 

Then (remember, I told you this month is madness!!) I hopped on a plane to Philadelphia for the Health Union Connexcion Conference! I've been working with Health Union since launched in 2013. Though I work primarily on their RA site, many of my legal articles have been published across their other platforms, such as,,,, and This conference was an excellent opportunity to meet many amazing advocates in person, to learn from each other, and to brainstorm how to keep moving forward. 

Though it has been really exciting to be involved in all of this, I must say that I'm really looking forward to spending some time with my family in Hawaii and California for the next two weeks! Heaven knows I could use a vacation!!! And hopefully when I return I'll be rejuvenated enough to hop back in and keep fighting for better outcomes for patients living with chronic illnesses.

Friday, March 17, 2017

Facing Forward: Elizabeth

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: Elizabeth
Location: Denver Metro Area, Colorado, USA

Diagnoses: The ones that impact my daily life the most: fibromyalgia, dysautonomia - postural orthostatic tachycardia syndrome (POTS) & inappropriate sinus tachycardia (IST), joint hypermobility syndrome (JHS), complex allergies, eosinophilic esophagitis (Eoe), irritable bowel syndrome (IBS-C), depression

Others that still impact my health, just not to the same extent: asthma, attention deficient hyperactivity disorder (ADHD), migraines & chronic headaches, temporomandibular joint dysfunction (TMJ) 

Age at Diagnosis: Fibromyalgia = 22 years old; Dysautonomia = 24; JHS = early 20s (unsure exactly when the Dx was made because I wasn't told about it until much later); EoE = 24; IBS-C = 25; Depression = 14; Allergies = 2 (still searching for what complex condition it is)

Asthma = 5; ADHD = 14; Migraines = 19; TMJ = 22 

How are you currently treating your condition?
Fibro: I take a muscle relaxant some nights, to ensure I sleep well. Meditation and Pilates have helped me immensely! I also take magnesium every day (which is actually for IBS-C now), it definitely helps.
Dysautonomia: Right now, I’m just on a beta blocker because I want to have children relatively soon. I try to make sure I keep my fluid intake high (I drink a minimum of 2 ½ liters of water a day, usually closer to 4 liters; “8 glasses a day” is 1.89 liters). My dysautonomia is not under control.
JHS: Weekly Pilates based physical therapy sessions, weekly group Pilates classes (when my therapist clears me for them, right now I can’t). I also use OTC pain killers (Aleve is the main one) when my pain gets out of control.
EoE: I take Zantac twice daily. Avoiding known triggers is the best treatment however, and they can be extremely difficult to track down. Right now, we know dust, pollen, and several foods trigger it. However, sometimes it still triggers without a known cause. I have two reusable respirators that I use when it flares up (or if I know I’ll be around environmental triggers).
IBS-C: Currently we’re trying a dramatic change in my diet (the low FODMAP diet) and increasing my magnesium dosage. Daily high dose probiotics have definitely been helpful.
Allergies: I currently take three different medications to specifically treat my allergies: Nasacort (nasal spray), Xyzal, and Singulair. My allergies are not under control, so I’m seeing the immunology department at National Jewish Health at the end of January; NJH is a specialty referral center, so hopefully they’ll be able to figure something out.  
What are the biggest challenges you have faced since your diagnosis?
The diagnoses I’ve received as an adult came as a hard blow (with the exception of IBS-C, because I’ve had it my whole life). I had to completely change a lot of aspects of my life, and give up many of the things I loved. Grieving my old life, without wallowing, was the initial challenge. Now, however, it’s remembering my limitations and having to sit out on things I really would love to be doing. Having to miss out never gets easier, and it has caused me to lose many of the people I used to consider friends. It also kills me to have to tell my husband that I can’t do something because I’m in too much pain or too dizzy, because I know it upsets him to see me hurting. We’re still struggling to find “safe” activities I can do, so we can still get the most out of our lives.

What are your favorite tips and tricks for managing everyday tasks?
Think everything through first, so you can do it as efficiently as possible. Examine your daily routines, and determine if there is a more efficient way to do it. Once you get diagnosed with chronic, energy zapping conditions, everyday becomes a balancing act. Remember, you can’t do what you used to (at least, not without paying for it severely); it’s okay to only get one load of laundry into the washing machine.
Don’t be stingy on your health care. I put off buying a transport chair for much longer than I should have, because it was about $100 (and I didn’t want to admit I needed one). I didn’t purchase it until my pelvis started dislocating when I would walk too long. Now that I have it, however, I have significantly less pain! I also have a lot more stamina; I hadn’t realized how much energy my dysautonomia would zap from me while I was on my feet. I know being chronically ill is expensive, but if something is going to make your life infinitely better, than it’s probably worth the money!
Find new hobbies that you absolutely love, that you can do during all sorts of different health conditions. Coloring/drawing/Zentangle is great for bad days where you’re trapped on the couch or in bed, so is reading! On my good days, my husband and I love going to the museum (it has to be a really good day). On my so-so days, we love to go for drives around beautiful Colorado and find picnic spots or scenic overlooks.
How do you manage to keep facing forward every day?

Some days it’s extremely difficult, admittedly. However, I always have my wonderful husband, Dan, to remind me that it’s worth hanging on! My husband and my two adorable kitties are worth more to me than they realize, and they’re my main reason for moving forward every day.

My mindfulness meditation (daily) practice has also helped dramatically. Meditation has helped me reprogram my brain a little bit, and I no longer view negative things as harshly as I did before. I highly recommend it to everyone! Erasing several decades of programming takes time, but after just a few months I did start to notice a difference. Now, several years later, the difference is dramatic!
If you could go back to diagnosis day and tell your past self one thing, what would it be?
“It’s not the end of the world.” The fibromyalgia diagnosis was the first (big) one, just a few months before my wedding, and it was extremely difficult on me; I think I spent about two days on auto pilot, and cried a lot. However, as time went on, I learned how to manage it and now I don’t get much pain from it. Each diagnosis since then has been easier to handle, and I’m learning a lot about my strength and how to navigate the world with my illnesses. I’d definitely tell myself that “it’s not the end of the world” because it wasn’t!

Do you have a blog you would like to share?
--> I blog about the craziness of juggling all my illnesses with a “normal” life on Finding Life’s Silver Sun. I don’t post exclusively about my illnesses, and often scatter in recipes, art, and fun things that I got to go do. My blog is all about trying to live my best life possible!

Would you like to be featured on Facing Forward? If so, please send an email to  

Wednesday, March 15, 2017

What You Need to Know About Pregnancy With Rheumatoid Arthritis

I’ve always known that I wanted to be a mom. When I was diagnosed with rheumatoid RA at the age of 25, one of my first concerns was how the disease might impact my ability to start a family. RA can certainly make pregnancy a bit more complicated. Whether you are thinking about your first pregnancy or considering expanding your family, if you’ve been diagnosed with RA you probably have a lot of the same questions that I had.

While I've already covered this particular topic on several other websites, I'm very excited to have the opportunity to potentially reach more moms (or moms-to-be) who may be feeling as alone as I did in their shoes! Read more on NewLifeOutlook RA! 

Tuesday, March 14, 2017

Scientists Discover New T-Cell Subtype That Could Lead To Better RA Treatments

A research team has made an interesting new discovery that might impact the future of rheumatoid arthritis treatments. The results of this new study help illustrate a path towards treatments that could be much more precise and focused only on the most relevant immune cells. 

Monday, March 13, 2017

Hello, Representative. Does My Insurance Cover Sex Therapy?

My therapist helped me find practical ways to work on self-care, to focus on enjoying my life, and to find the energy to care for my husband and family. Deciding to speak to a sex therapist was one of the best decisions I’ve ever made towards improving my quality of life...but that doesn't mean my insurance company made it easy!!

Friday, March 10, 2017

Facing Forward: Lydia

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: Lydia
Location: Vancouver, BC Canada
Diagnoses & Age: 
Depression - Diagnosed at 30 (traced back to age 8)
OCD, Anxiety/Panic Disorder - DIagnosed at 30 but was happening for a long time
Bipolar Disorder - Diagnosed at 32 (traced back to teens)
Bingeing Disorder - Diagnosed around 48 (because I hid it well)
Irritable Bowel Syndrome (IBS) - Diagnosed around age 12
Asthma - diagnosed at 33
Chronic bronchitis - diagnosed at 11
Fibromyalgia - diagnosed at 34
Chronic back pain (L1-L3) - diagnosed at 33 after 3 fractures during accident
Chronic Fatigue Syndrome (CFS) - diagnosed in early 50s
Pre-diabetes - diagnosed around 55
Chronic kidney/bladder infections & kidney stones - currently being tested
Migraines - diagnosed at 16
Vertigo - diagnosed in early 50s
Hernia - diagnosed at 56 (caused during gall bladder surgery as was a hematoma on my liver)
Osteoarthritis - I thought I would give you a little info on this one. I damaged my right knee at 15 learning to ski. A doctor removed "all" the cartilage because it was damaged. In truth he missed fragments and they worked like sandpaper between the kneecap and joint. I had several procedures over the years and was told it would probably develop arthritis sooner than later. I had a bipolar related accident at 32, which caused trauma to my entire body - once again I was told to expect arthritis. At 46 I enrolled in culinary school (a lifelong dream) and halfway through I was diagnosed with osteoarthritis in my knees, feet, hands, neck, and back. I have had physio, medical acupuncture, massage therapy, and medication. I walk with a cane outside of my home and sometimes in as well. It is definitely progressing, especially in my hands, knees, and feet. I can no longer stand long hours to do catering or have steady hands for cake decorating (though I still teach a little of both). I had my right knee replaced when I was 51. I had a hard time finding a doctor that would do it at that age but when he did, he said it would never have waited another 10 years. My left knee and hip are now starting to go from taking most of the weight all these years.
How are you currently treating your condition?
My bipolar, depression, OCD, panic attacks, and anxiety are for the most part under control. However, this takes a lot of work including some maintenance meds, breathing exercises, trying to regulate my sleep, food, and exercise, as well as doing regular "self checks" throughout the day to make sure I am on top of any triggers.

I am on a boatload of medications for the chronic pain conditions (fibromyalgia, arthritis, back pain, CFS) but this is only half the story. I use tools such as pacing, goal setting, appropriate exercise (which changes with pain levels - walking in a pool is one of the best but only when I can get to one), breathing techniques, and massage therapy. Most of these were learned through 3 different pain clinics.

I am managing the pre-diabetes with diet for now.

The migraines have various triggers such as cheddar/orange cheese, caffeine, chocolate, sulphates, and MSG. I also get sinus migraines and stress headaches.

The hernia will hopefully be operated on this year and the vertigo is treated by an EMT. It is related to crystals being out of alignment in my right ear. I have exercises to do and if it gets beyond them I have to go in for a treatment.
What are the biggest challenges you have faced since your diagnosis?
Well, managing all those conditions does have its challenges for sure. The mental illness conditions can bring on chronic pain and vice versa. The IBS can be triggered by anxiety, not eating the right foods or at the right times, lack of sleep, or just about anything else. While constipated from it I get nauseated, depressed, and experience pain in my back and right leg (the one operated on).

I need to make sure I am alert and calm before I drive anywhere, especially places I am not familiar with, so I don't drive often anymore. Pain, anxiety, depression, and medication are all factors. Chronic pain and CFS also affect my going out. If it is more than a half hour trip I must consider stops to stretch. If someone else is picking me up I maybe have problems getting in and out of a car. In winter I have to be very careful of ice and snow. Even with my cane I am not very steady.

Along with asthma I have allergies to plants, dust mold, and most flowers. As well, triggers include any kind of smoke, incense, perfume, hair spray, anything scented or aerosol. This makes public places difficult. I can't stand, sit, walk, or even lay down for very long at one time. Fibromyalgia can make my clothes and hair hurt.

What are your favorite tips and tricks for managing everyday tasks?
I think the best two things I have learned are proper breathing and pacing.

One breathing technique that is kind of backwards to reflex action is when dealing with a pain situation breathe out on the pain or exertion instead of holding your breath and/or breathing in. Breathe out through your mouth slowly and steadily. For panic, breathe in for a count of three, letting the air extend the abdomen, and breathe out for a count of six, deflating the abdomen.

Pacing basically means compartmentalizing tasks into manageable  blocks of time and energy. I will empty the dishwasher (using the breathing techniques when bending down) and then take a break either to rest or do something else that uses a totally different group of skills and energy (say working on the computer). I will not do either for more than half an hour. If I need to go back to fill the dishwasher I will, and then take another break before cleaning counters, doing hand washed dishes, etc. This works for almost anything.

How do you manage to keep facing forward every day?
First, I am a woman of faith and knowing that the Lord is there for me is a great motivator. I belong to a group of ladies online who all share beliefs and chronic illness. It is very comforting to know I can go there and be uplifted.
My blog has given me a new reason to face everything head on. Writing about my challenges and my passions as been very freeing for the past 2+ years. I never thought that my chronic health problems would become a focus of the blog, but it happened almost instantly. I have a following of like-minded people and some who are looking for someone who has been through what they are to get some insights.

I have had the great honor to mentor some very special young women over the years, and that keeps me in check with my life because I want to set the right example for them. They don't necessarily have the same challenges as I, but if I can show them that I can work through this, they can attain anything they desire.

I just recently broke through a lot of emotional "baggage" from my life that was definitely holding me back from getting better and facing forward in my current life. Since working through that (and leaving some important people out of my life), I feel stronger and ready to take on whatever is next.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
The day I was diagnosed with osteoarthritis it felt like I was hit in the gut with a wrecking ball. I had just started on my way to achieving the career I had always wanted (catering) and it looked like it was all going to be taken away.

If I could go back to that day I would tell myself not to sell myself short, and that anything can happen if you set your mind to it. I don't cater anymore, but I consult - setup menus with quantities, develop recipes, etc. I teach young people basic cake decorating, even though my withered fingers can't do it anymore. I also consult on special diets such as gluten-free, etc. and have people all over the world getting my assistance on recipes.

Do you have a blog you would like to share?
Being Lydia

Would you like to be featured on Facing Forward? If so, please send an email to  

Wednesday, March 8, 2017

International Women's Day - A Day Without Her

Today is International Women's Day, and I just wanted to say that I think women are pretty amazing. There are 450+ women in my Mamas Facing Forward group - juggling pregnancy, motherhood, and chronic illness all at once - and learning to find strength from these experiences. But it's not just these women that I find so wonderful - it's also their mothers, sisters, daughters, and friends who help them figure out how to keep facing forward on a daily basis. 

So when Healthline asked me what it would be like if the most important woman in my life disappeared for one day, I didn't hesitate for an instant!
The most important woman in my life is certainly my mom, who has always been there for me. These days, when my RA flares, I sometimes struggle to take care of myself — let alone my two little boys, ages 2 and 4. My mom is always willing to drop whatever she's doing and help me with my boys when I'm not feeling well. Without her, motherhood with a chronic illness would be a lot more difficult.
Thank you so much, mama, for being the most amazing woman in my life!!

Check out some other incredible women in Healthline's article: A Day Without Her.

Friday, March 3, 2017

Facing Forward: Kristin or mini2z

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:  Kristin or mini2z
Location:  Ontario, Canada
Diagnoses: Hashimoto's, Chronic Migraines, Latent Autoimmune Diabetes in Adults also known as; LADA, Type 1.5 diabetes or progressing Type 1 Diabetes, Lupus SLE and Fibromyalgia, Gastritis.
Age at Diagnosis: 25 for Hashimoto's, 42 for Diabetes, 44 for Lupus SLE and Fibromyalgia

How are you currently treating your condition?
I was sick for so long between the Hashimoto's and the other autoimmune diseases. I argued with my Endocrinologist to put me on a Natural Desiccated Thyroid medication. He finally gave in and I was really sick for about four months after the switch over. My thyroid was finally controlled with the NDT medication. The diabetes is an autoimmune disease and I'm currently on three medications including insulin in really small doses. After the LADA diagnosed I went on a Gluten Free diet and because of diabetes and getting off the sugar, bad carbs, and eating healthy I did the 21-day fix and learned even healthier eating. I see many different doctors for all the complications of my autoimmune diseases but I also see a Chiropractor and a masseuse.
What are the biggest challenges you have faced since your diagnosis?
I've not been able to work for the past two years, the pain, the fatigue, the depression and anxiety. I have basically become homebound and have very little interaction with anyone other than my family. I was very hurt when no one from work called, texted, or sent messages. You'd think after 26 years someone would care but I'm working it out and not letting it get to me as much as it used to. I was getting almost my full pay some of the sick leave but now I'm adjusting to less money and monthly pay instead of weekly.

What are your favorite tips and tricks for managing everyday tasks?
I usually get up around 10 am or so. My dogs sleep in and don't bother any of the family members but when momma wakes they want food and then outside. I will make a tea, try to clean up something in that time. I'm not able to do even half the things I used to do. If I want to cook something I try to think about it a few days in advance because I never know how I'll feel on any given day. I'm still working on my new normal and find it hard. 

How do you manage to keep facing forward every day?
My family and the pupalups! I'm never alone because I have furry company. My psychologist told me I should get Ranger trained as a therapy dog. He's with me most of the day and he's like a heating pad. There are days that are hard and the depression is bad. I know I have an amazing family and even if I don't contribute like I used to I know I'm needed here. I've recently hired a person to come in and clean the house every two weeks and it helps.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
It's a journey that you weren't expecting but you got this! You're going to be okay! You will have bad days, even worse days but you'll have love of family. Start a journal from day one. Several of your symptoms will confuse you because they come with all of your autoimmune issues. Fight hard to get to see the specialists. 

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