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! 

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. 

Read more on RheumatoidArthritis.net! 

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!!

Read more at RheumatoidArthritis.net!

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 mariah@fromthispointforward.com.  

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.

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. 

Do you have a blog you would like to share?
mini2z

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

“Supporting Fatigue” at the 2016 American College of Rheumatology Annual Meeting

While a 2004 study showed that 65% of patients prioritized fatigue, Dr. Hewlett pointed out that doctors too often focus on pain and ignore fatigue. This year a session focusing specifically on the issue of fatigue and how doctors can help their patients better manage it was hosted at the American College of Rheumatology Annual Meeting.

Read more at RheumatoidArthritis.net!

Facing Forward: Vicky

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: Vicky

Location: Alaska

Diagnoses: Migraine/Tension/Cluster Headaches

Age at Diagnosis: 15

How are you currently treating your condition?
Now days, I usually use a combination of Excedrin Migraine and Benadryl at the first sign of head pain. When I need a rescue medication I use Maxalt and Phenergan. At one point, I took a preventative medication, but I don't anymore. I try to drink plenty of water, but faily every day. I try to stretch my neck and back muscles as often as usual. I use Fay Farms lotion, which contains magnesium, to help reduce my anxiety and stress levels. I mix peppermint and lavender essential oils and rub it on my temples and the back of my head. I sometimes carry a vial of peppermint with me to sniff at the very first signs of head pain.

 

What are the biggest challenges you have faced since your diagnosis?
My biggest challenge with chronic migraine has been figuring out the triggers and eliminating things from my life. I have found a few triggers and had success getting rid of them, but something else takes its place every single time. I also struggle with never knowing how bad my head will hurt each day. I currently live with head pain always, it just depends on how "bad" it is as to whether I'm "down with a headache."

I think what has been the hardest though is the fact that I can't exercise like I used to. When I was a child, I was a competitive dancer and I really wanted to be a professional and later teach dance. As my head pain has gotten worse, I have found that any activity where I jump, spin, or change my body direction fast doesn't agree with my body.

What are your favorite tips and tricks for managing everyday tasks?
I try to make sure I always have medication with me so I can take something before it gets totally out of hand. I also let others know about my head pain and migraines. I have educated my boys from day one about them. 

How do you manage to keep facing forward every day?
I get through each day by sheer determination. I have 4 young sons that depend on me. That is not to say that some days I don't do most of my mothering from my bed. I've read them many books and had deep conversations lying in my dark room with an ice pack on my head.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back and tell myself something about this diagnosis it would be, "hold on, it's going to hurt, you'll get through."

Do you have a blog you would like to share?
My blog is called Living the Diagnosis. It is a story sharing site focusing on chronic illness, mental health, and rare conditions. I have been amazed at the stories others have shared and learned so much about "living" with different diagnoses. 

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

The Scheduled Sex Experiment

Scheduled sex. The concept honestly didn’t appeal to either of us, because it seemed so forced and unromantic. My husband was also concerned that scheduled sex would become just another stressful thing on my to-do list (no pun intended!). But we both wanted to improve the situation. We knew we were dealing with mismatched libidos and that we had very limited time to be alone together. So we decided to give it a try.

Read more at RheumatoidArthritis.net!

“Where oh where is my libido?” or The Time I Decided to See a Sex Therapist

Deciding to see a sex therapist was a very weird feeling, because it seemed so taboo and there’s a certain kind of negative stigma associated with needing “sex therapy.” But I had run out of options and didn’t know where else to turn, so it seemed worth giving it a try. Almost a year later I can say that it was a very good decision – for me personally, for my relationship, and for my family as a whole.

Read more at RheumatoidArthritis.net!