Friday, December 2, 2016

Facing Forward: Chelsea

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:  Chelsea
Location:  St. Paul, MN
Diagnoses & Age: Asthma and allergies at age 1; Alopecia areata at age 3 which morphed into alopecia universalis at age 28; Fibromyalgia at age 24; Hashimoto's at age 31; unknown CSF problem (still undiagnosed) at age 36; mast cell activation disease at age 42.

How are you currently treating your condition?
Treatment includes a cocktail of supplements and medications that add up to about 45-50 pills a day. I also have a shunt in the left hemisphere of my brain that most recently failed 17 days after it was implanted in May of 2015 (my 10th in less than 4 years); the hope was that it would help to move fluid that seemed to be getting caught around my brain stem, but my body does not like to have foreign objects implanted in it, so it strangles and/or clogs the shunts. I also attend mental health counseling sessions every other week. I get monthly massages because I have to lay flat to relieve the pressure in my brain but it makes my fibromyalgia go nuts. And every day that I am able to (if I'm not fighting a cold or infection, like now), I sing. My neighbors in my apartment are lucky I'm not tone deaf because I'm certainly not shy. 
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge since being diagnosed for my MCAD is figuring out exactly what will trigger it, including food dyes, detergents, and temperature. My doctor said that even certain vibrations may set me off! Every day gets me closer to being called back to the mother ship, I swear. As far as the mystery CSF problem goes...well, I don't have a diagnosis, so that's a huge problem. I didn't know doctors could tell me to go away and not come back. I didn't know the Mayo Clinic could tell me not to walk through their doors because I am "too rare to diagnose or treat" (and therefore bring down their stats showing their success rates). I am still trying to find a neurosurgeon and neurologist in Minnesota who will take me on and I've worked my way through every healthcare group in 16 months and I'm not allowed to go out of state. I'm now working with a non-profit group that is trying to advocate on my behalf to see if they have any sway. 

What are your favorite tips and tricks for managing everyday tasks?
I am not sure if I have favorite tips or tricks, but I make sure I limit myself to one chore a day, not multiple chores. Of course this is nearly impossible if you have children or pets. They keep you on your toes constantly. I have neither, so that's the only reason that rule works in my world.

How do you manage to keep facing forward every day?
Whenever I have particularly rough days, I watch videos of babies laughing and animals being goofy. And again, I sing. What my neighbors must think!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell my past self to take that backpacking trip across Europe. Though I have made it over to that continent to visit friends three times, I should have done the hostel, no-shower, wash-your-underwear-in-the-sink trip when I was 19. I would have also told myself not to be so hard on my younger body and hate it so much. I would love to have that body back.
Do you have a blog you would like to share?
My blog is The Sick and the Dating. It does have an adult theme and adult language because I am an adult, but not every piece is rowdy.

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

Monday, November 28, 2016

Chronic Christmas: Surviving the Holidays with a Chronic Illness

My friend Lene Anderson has just released a new book - an Advent calendar of tips for a sane holiday season for those living with chronic conditions. One of my favorite features of this book is that it also offers suggestions for how loved ones can help!

You can get your own copy of Lene's book by clicking below (Affiliate link - every little bit helps Santa put those presents under the tree!!)

Friday, November 25, 2016

Facing Forward: Kami

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: Kami 
Location: Oregon
Diagnoses: Chronic Lyme Disease, POTS, Chronic Fatigue Syndrome, Mold Illness, MTHFR Gene Mutation
Age at Diagnosis: 27

How are you currently treating your condition?

Lyme disease has a multitude of treatment options due to it's complexity and how differently each patient can respond to treatment. I am currently following an all-natural treatment protocol under the supervision of my Lyme specialist. In addition to my Lyme treatment I am treating mold illness and supporting my body's MTHFR gene mutation. Part of how I support my current treatment is through regular detox routines, eating a very low carb diet, and doing what I can to listen to my body's signals for rest.
 
What are the biggest challenges you have faced since your diagnosis?

I think the biggest challenges for me have been navigating the responses from people on the outside. How doctors, friends and family view my illness, believe my symptoms and the ways they are willing (or not willing) to support and connect with me. It's definitely been a learning experience, figuring out how to balance caring for my body and maintaining relationships when my life has been so completely transformed by chronic illness.

What are your favorite tips and tricks for managing everyday tasks?

The word I find myself coming back to time and again is balance. It is so easy to push ourselves to our breaking point simply by trying to stay on top of our treatment schedule alone! One of the things I've been trying to implement more this year is setting timers, alarms, reminders for anything I need help prioritizing. Whether it be rest, blog work, treatment, detox practices, or self-care I am finding that this is a helpful tool for curbing my tendency to over-do it!

How do you manage to keep facing forward every day?

My view on this may not be popular opinion, but it has been vital to my ability to face each day of illness. I think we can place so much pressure on ourselves to always "stay positive", overlooking the very need of (and health found in) allowing ourselves to process the hard. In giving myself the space to feel the natural emotions that come with sickness and in talking with others who understand this life as well as a good counselor, I'm able to embrace healing and comfort along this difficult path. It also helps me to further connect with my readers and hopefully encourage them to find their own healthy balance in order to face each one of their difficult days.

If you could go back to diagnosis day and tell your past self one thing, what would it be? 

If I could go back, I would most likely be going back to my original misdiagnosis of Multiple Sclerosis. I would encourage myself to do more research, to read other stories of people who were diagnosed with MS as I'm sure I would have come across someone who, like me - was actually fighting Lyme disease all along. I would remind myself that I know my body better than any doctor or outside source, that my health is my priority and therefore if I have concerns or questions it is my responsibility to keep searching for answers. I totally understand why I trusted my original doctor. We have been taught to put our trust in them, to expect them to know exactly what is going on. However after being diagnosed with and treating Lyme disease, I know that it's frequently misdiagnosed and vastly misunderstood by the medical community. Doctors are an amazing resource and can be so helpful - but we will always have more of a vested interest in our health and care.
Do you have a blog you would like to share?

I currently blog over at Living Grace about living with chronic illness and all the things that intersect with this life: marriage & relationships, self care, treatment and detox, grief and community. If you'd like to connect more you can find me there!

You can also find me on:

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

Monday, November 21, 2016

Chronic Illness Bloggers Holiday Giveaway!

You may have seen mention of the Chronic Illness Bloggers Network in some of my previous posts, as the network has given me the opportunity to receive and review quite a few useful products. Today I'm excited to share that the network has put together a holiday giveaway to give a some lucky readers a chance to win some of these products too!

The giveaway will run from November 21st through December 3rd. There are 11 prize packs, each with a value between $400 and $600. Winners will be selected at random. (Please note: two of the prize packs can only be shipped to US addresses. If a non-US-based winner is chosen for one of these prize packs, the winner will have the option to have the prize shipped to a US address or forfeit the prize). 

Prizes include several things that I have talked about on this blog:
To check out the details of each prize pack and to enter the giveaway, please head over to:


Friday, November 18, 2016

Facing Forward: Marya

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: Marya
Location: Tampa Bay
Diagnosis: Cervical Dystonia
Age at Diagnosis: 48

How are you currently treating your condition?
Xeoman shots (form of Botox) healthy living including yoga, clean eating, heating pads, massager, therapy pool when I can, and stress management.
 
What are your favorite tips and tricks for managing everyday tasks?
Give myself plenty of grace and margin. Don't overload with unrealistic expectations.

How do you manage to keep facing forward every day?
I have to keep going for my family but ultimately it's my faith in God - I have to trust His plan and provision no matter what.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Hang tough...It's going to be okay.

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.  

Friday, November 11, 2016

Arthritis Foundation Conference of Champions

Last week I was very lucky to have the opportunity to attend the Arthritis Foundation Conference of Champions. It was very empowering to get to be among so many committed and enthusiastic advocates, and to learn more about what the Arthritis Foundation achieved over the past year - and what they hope to achieve in the future.

Michael Ortman, Arthritis Foundation Board Chair, set the stage for the Conference by placing an empty chair next to the podium and reminding everyone that the Foundation always needs to be serving the patients who are actually living with arthritis - and their families. President and CEO Ann Palmer shared the results of several Arthritis Foundation studies conducted in the last year, emphasizing the reality that arthritis is more than just physical pain and highlighting that these other impacts also need to be addressed. The speakers worked to inspire the audience to raise the bar for future advocacy and fundraising efforts.

Unfortunately, I wasn't able to attend the Evening of Honors, so I missed seeing my good friend Colleen Ryan being awarded the Charles B. Harding Award for Distinguished Service to the Arthritis Foundation. Colleen's daughter (who is now in college) was diagnosed with juvenile arthritis at the age of 3, and since that time the Ryan family has worked tirelessly to support people living with arthritis. Their fundraising team is The Princess Parade, and Colleen's husband was the one of the wonderful friends who so graciously set up our tent every evening as I struggled through this year's California Coast Classic. (In fact, it was through Colleen that APL & I originally learned about the CCC). The award is highest that the Arthritis Foundation gives to volunteers, and it could not have gone to a more committed and deserving person. Colleen is someone I look up to as a mother and a leader, and I'm truly honored to consider her and her family among my friends.

I did get to return to the Conference the following morning to hear from the Arthritis Foundation's Senior VP of Scientific Strategy, Guy Eakin. He explained that the Arthritis Foundation's scientific strategy is driven by patient voice and feedback. He also provided an overview of four bold initiatives going forward: (1) cultivating a new generation of rheumatologists, (2) advancing osteoarthritis treatment, (3) conquering childhood arthritis, and (4) improving quality of care from the patient's perspective.

After some round table discussions (where I learned about some Arthritis Foundation resources I hadn't previously known about - more about that in a future post!) I was able to stay for the "Recognizing our Champions" Awards Lunch. I was honored to get to cheer for some of the amazing people who are raising hundreds of thousands of dollars to help people living with arthritis. I was especially honored to get to cheer in person for the California Coast Classic - the largest Arthritis Foundation fundraiser in the country that raised over a million dollars this year!!

It was very inspiring to see and hear from people all over the country who are committed to improving the lives of people living with arthritis, and I hope that I am able to continue my volunteer efforts with the Arthritis Foundation going forward!

Facing Forward: Melissa

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: Melissa
Location: Wisconsin 
Diagnoses: fibromyalgia, SEID, myofascial pain syndrome, chronic fatigue syndrome, IT Band Syndrome, Anxiety, Depression, IBS, allydonia, migraines, photophobia, TMJ, sciatica, ADD, sleep maintenance disorder, sciatica, degenerative disc disease, mild scoliosis, arthritis, SAD
Age at Diagnosis: Anxiety/Depression - early 20's, The rest of the syndromes/conditions began around the age of 39.

How are you currently treating your condition?
I have found a good balance of prescription medicine and vitamins. They are; Methocarbamol, Gabapentin, Nortriptyline, Citalopram, Adderall, Clonazepam, Tramadol, Vitamin D, Magnesium, Probiotic, Vit. B, Multi-Vitamin. It is important to keep moving. I attend aqua aerobics twice a week. In addition, once a month I go to chiropractor and acupuncturist. 
 
What are the biggest challenges you have faced since your diagnosis?
In the beginning it was accepting my limitations. I still have to remind myself that I can do only what I can do. I can't volunteer or participate in every school activity. I had to learn to allow myself to stay home when my body is telling me that it needs rest. It was a difficult time when every time I went to the doctor I was receiving another diagnosis and treatment. 

What are your favorite tips and tricks for managing everyday tasks?
It is important to have a sleep routine and stick to it. Emotionally it is good to find a support group that you feel comfortable sharing and asking questions. Keeping a daily routine and balancing your activities with rest.

How do you manage to keep facing forward every day? 
My daughter is my biggest reason to keep fighting. Also, I found that using my love for writing and helping others helps keep me positive and determined  not to give up. I started by beginning a Facebook page & Blog (Fibro Warriors ~ Living Life)offering positive encouragement, medical information, resources, and support to others. I  am a co-leader for a group in Minnesota and leader of an online support group. I was very fortunate to be chosen by the National Fibromyalgia & Chronic Pain Association to be a member of their advocate group, Leaders Against Pain. I write for ProHealth.com and am an active member of the Chronic Illness Blogger group. My most recent project was publishing my first children's book, Ravyn's Doll: How to explain fibromyalgia to your child. I have been reading the book to preschool & elementary children. It has been an amazing hearing stories from others about how the book has helped children not just understand  fibromyalgia but how to treat/help others with/without invisible illnesses.  It gives me hope.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
There are going to be hard days when you wish your life was over but you will survive those days. You will learn that you are stronger than you think you are and like your Dad says; "you will make lemonade out of the lemons". 

Do you have a blog you would like to share?
Fibro Warriors - Living Life

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

Friday, November 4, 2016

Facing Forward: Michelle

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: Michelle
Location: Hamilton, Ontario, Canada
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 35

How are you currently treating your condition?
I am treating my condition with methotrexate, Humira, and also narcotic painkillers when needed. I am a believer in of the benefit of clean eating which helps my energy. The most important tool I have besides my medications is meditation. I have been practicing meditation and as an extension, mindfulness, for about 6-8 months. It has completely changed my viewpoint of my disease and what it means in my life. It helps me deal with pain and keeps my emotional state in balance since I also suffer from depression and anxiety disorders.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenges I have faced since diagnosis would have to be pain first. My RA onset was rapid and severe after my second pregnancy, affecting approx 20 joints in my body. The pain brought me to a very bad mental space. I hated life and I couldn't imagine living with the pain of this disease. I felt guilty and angry about being a mom because it required so much pain from me to do anything and I was so so angry at my husband for anything he did. I had to use a wheelchair to get around at times and couldn't change my baby's diaper. The mental health aspect of being diagnosed and living in pain was extremely difficult, and made my depression and anxiety spiral out of control for a while.

A second big challenge was navigating the health care system. In Canada with universal health care, I am lucky that my doctors visits, monthly bloodwork, and procedures are covered. Drugs are not. So I had to jump through hoops with my insurance company; trying 3-4 standard DMARDS as per their protocol before moving on to a biologic, even though my doctor and I both knew with my prognosis I would need a biologic to get this under control. But given their cost I needed the coverage because I wasn't able to return to working. When I finally got the Humira (thanks to the drug company who covered the cost for several months while my insurance caught up) it was life changing. Finding the right med balance for relief was also a challenge. The first year after diagnosis was a huge challenge in general. Some days I'm amazed I made it through. It seems like a dream now. I still have bad days and parts of each day, but I have tools now. My RA isn't wildly out of control anymore.

Energy is just a huge challenge in general. I struggle with it every day. Brain fog and lack of energy are 2 of my least favorite things in the world.

What are your favorite tips and tricks for managing everyday tasks?
- Rest every day. Find times in your day to rest your body and prioritize them. It gives me energy to do the things I need to do. 
- Hot Epsom salt baths are a lifesaver for stiffness and pain. Basically any time I need to do something physical or that requires energy and stamina (like shopping or a theme park) I take a bath first! 
- Meditation can help you strengthen your mind and aid your ability to work through pain 
- When others are around, like my mom or husband or brother, I let them do the physical tasks. I do as little as I can when I can and conserve my strength for when I need it 
- Exercising every day helps so much, mentally and physically. I couldn't do it when I was in the midst of diagnosis and early disease but now that I can I make sure to move my body every day even it's just a walk for 15- 30 minutes.

How do you manage to keep facing forward every day?

I manage to keep facing forward everyday because I know that nothing lasts forever. As odd as that sounds, I know each flare will pass, each challenge will be met. I know the clouds will pass and that the blue sky is always there underneath. So I just try to hold on for the ride and keep facing forward.

I have an amazing family. A husband who is beyond supportive in every way and 2 daughters who are sensitive to my needs and fill me with joy. They keep me facing forward. I also have an excellent support network in my parents, brother, and a few close friends. They help me as often as they can and I love them for it.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to diagnosis day I would tell myself to not get swallowed up in despair. To believe in my strength, and believe that I can handle this, that I will find meaning in it and own it and be better for it somehow. Because I did all of those things and am proud of who I've become on the other side.


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

Thursday, November 3, 2016

A Profile of Mariah Leach: Mom, Blogger, Bicyclist

I'm excited that I recently had the opportunity to chat with the amazing Lene Andersen, author of The Seated View, about my experiences riding in the California Coast Classic. Her main question was a great one: why?!?! 

What I Be

While I was at the 2016 Joint Decisions Empowerment Summit in Philadelphia a few weeks ago, I had the opportunity to participate in Steve Rosenfield's "What I Be" project. The project is a social experiment that encourages participants to put their biggest insecurity out in the open and expose a side of themselves that no one sees. Participants then make a statement: "I am not my _____."

As you may be able to glean from my image, my biggest insecurity is asking for help. But, when Steve asked me to explain why I don't ask for help, I have to admit was sort of at a loss for words. There are so many reasons that it is difficult for me to ask for help - and I found I couldn't possibly explain them all in the 15 minutes we had to take my photo. The simplest explanation we were able to come up with is that I don't want help - and so we settled on: I am not my pride. And there is absolutely some truth to that.

But, in reality, the reason I have trouble asking for help is a lot more complicated than simple pride.

I don't want help.

I hate that I so often need help.

I don't actually realize I need help until it's too late to ask.

It's uncomfortable to ask for help.

I feel guilty for needing help in the first place.

There isn't anyone to ask for help.

It takes more energy than I have to find someone I can ask for help.

I tried asking and nobody listened.  

I recently asked and it feels too soon to ask again.

People expect you to only need help in special circumstances, not all the time.
 
Everyone assumes I look fine so I don't need help. 

I think this list could probably go on and on. Because the reason I find it difficult to ask for help is a lot more than simple pride. It's also guilt. Exhaustion. Anxiety. Frustration. Habit. Self doubt. Fatigue. Resilience. Endurance. Strength. Lack of any other option. The simple reality of living life with an illness that never, ever goes away. Because the truth is that people living with chronic illnesses are some of the most likely to need help - but often the least likely to ask for it.

I don't really like this picture of myself. To my own eyes my face looks exhausted and drawn, but I guess that's sort of the point. I look like someone who could use a little help, and the words on my face make that clear. So I want to share this image to remind myself how important it is to try to ask for help when I need it - and I hope that by sharing I can remind others who are struggling that it's ok to ask for help too. 

(If you'd like to see the images from the other Joint Decisions participants, you can check them out here.)