Q&A With Jodi McKee: Pregnant And Chronically Ill

You may recognize the glowing beauty above, since she has appeared several times on this blog. Among other things, Jodi McKee is a dear friend, a talented photographer, a Rheumatoid Arthritis patient, a wife, and most recently... a mommy-to-be! Last July, I introduced her remarkable Autoimmune Portrait Project which was later featured in Arthritis Today! With regard to this project, Jodi writes " my hope is spread the word about all of the younger people out there who are dealing with these chronic, often painful, illnesses. I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one out there." Incidentally, it was this project that first brought us together (click here to see my post!). Five months later, Jodi's spotlight appeared on Loving With Chronic Illness, and this spring she graciously offered one of original photographs as a giveaway.

As you can tell from her adorable baby belly, Jodi's newest venture is motherhood! When I first heard the news, I was overjoyed for her and her husband, but my thoughts immediately went to Jodi's health. How would her body react to a pregnancy? Would her condition be bearable after stopping her medications? Would she and her baby both be safe? I had a million and one questions (I come from a long line of worriers), but thankfully everything has gone smoothly. More than that, it seems pregnancy truly suits her...I mean, just look at that photo :)

Following my engagement this summer, I can't deny that family and children have been on my mind. Although motherhood is years away, I still wonder about my ability to carry a baby. I've been overjoyed for Jodi and her husband, and simultaneously filled with hope for my own future. Of course every woman is unique, but at least the possibility is there. Jodi: Thank you for making this interview possible, for sharing your story, and for reminding us that there is always hope.

When did you first realize you wanted a baby? Did Rheumatoid Arthritis impact this desire at any point?

I think I always knew that I wanted a family one day. My husband and I got married young and didn't plan on having kids right away. When I was diagnosed with RA at age 31, all of the doctors asked me what our plans were. It kind of forced us to really decide if we wanted to go for it. 

How did you decide that pregnancy was right for you? When and how did you open the dialogue with your doctors about this decision?

I think the initial diagnosis allowed the doctors to bring it up first. My husband and I sat with it awhile and discussed the pros and cons. We finally decided last summer that we wanted to, so then we went to a high risk ob/gyn to make sure it would be okay. At the time, I was on methotrexate and Humira. I stopped the methotrexate last summer and then stopped the Humira when I found out that we had conceived. 

What was your greatest fear when considering pregnancy?

Aside from the prospect of being completely responsible for a helpless baby, my greatest fear was and still is having a major flare after giving birth and being unable to care for my newborn. 

What was it like finding out you were pregnant? What went through your mind? How did you tell your husband? Your family?

It was completely surreal at first. I suspected that I was, and when my husband and I got home from a weekend out of town, I took the test. We both said that those two minutes of waiting felt like two seconds! I was so happy that the test was positive, but I think we were both a little freaked out.

We kept it as our secret for a couple of weeks, but we wanted to tell our families. Mother's Day was fast approaching, so we bought Grandmother cards and sent them to our moms with a note to call us when they got them. They were ecstatic! My husband's mom said it was the best Mother's Day present he could have ever given her. My mom was so happy and excited and my dad started crying. Everyone was so happy for us!

 

How has your pregnancy been going? How are you feeling physically, both in terms of typical pregnancy side effects and with regard to Rheumatoid Arthritis? 

My pregnancy has been going very well.  I had some nausea and some extreme fatigue in the first trimester, but it wasn't too bad. The second trimester has been pretty good over all. I've experienced some aches and pains here and there along with quite a bit of brain fog and forgetfulness, but I'm used to those things with RA.

RA has been a different story. I was really hoping to go in to some sort of remission during pregnancy, but it hasn't happened. I recently had to stop taking my NSAID, as it isn't safe after the second trimester. So, now I am back on everyone's favorite: prednisone. Since I've been on the prednisone, I've been doing okay. Not 100%, but manageable. I'm hoping for an easy and relatively pain-free third trimester.

How did your expectations for pregnancy compare the reality of it? Has it been better or worse than you imagined? Have there been any surprises?

I'm not sure what expectations I even had. I really had no idea what to expect, so the whole thing has been a big learning experience for me. The biggest "surprise" is just how awesome and crazy and surreal it is to see my baby on the ultrasound screen and to feel all of the kicks!  

Do you have any weird cravings?

I had a period of craving potatoes all the time (home fries, french fries, potato chips, you name it), but that was it. I've had a little more of a sweet tooth as well, but nothing crazy like pickles and ice cream. Not yet, at least!

What is your greatest wish for your child? (tough question, I know....)

That is really tough. I just hope they will be healthy, know who they are, and be the best them that they can be. 

If you could send a message to other chronically ill women who are thinking about starting their own families, what might it be?

Definitely talk to your doctor(s) about the pros and cons. Luckily, RA specifically isn't really high risk. Some of the medications make extra monitoring necessary, but for the most part, people with RA do quite well during pregnancy. I know it isn't the same for other autoimmune diseases, though. But if you really want to have children, work with your doctors to do what you can to make that happen.

The "Bad Vein Club" & Choosing Gratitude

 If you're unlucky enough to belong to the "Bad Vein Club," you know it can impact your quality of life...especially if you're chronically ill.

 Unfortunately, needles have played a leading role in my story. When I was a little girl in a large amount of pain, the first step was always blood work. Each time a new doctor entered the scene; each time a symptom arose; whenever a new medication was prescribed, my blood was constantly monitored and it will continue to be this way for the foreseeable future. 

While it's all been necessary, it's never been pleasant. In my 25 years, I've sat in hundreds of fluorescent exam rooms. Someone inevitably asks, "Has anyone told you how bad your veins are?" and I nod wearily. It can take anywhere from 2-6 attempts for a successful blood draw, and when it's all said and done, I'm left feeling like an over sized pin cushion. I became accustomed to this scene from a young age, and have learned when to move into autopilot. In those moments, I focus only on my breathing. As the needle goes in, I breathe out; the needle comes out, and I breathe in...

I live some version of this every month while receiving my Orencia infusions. When I began this medication last fall, I knew it would mean more time spent in the hospital, more nurses, and more needles...but I didn't care. Without effective medication, my disease was  raging out of control, and showed no signs of letting up. Each muscle, joint, tendon and ligament burned like small wildfires. My outlook was bleak, my fatigue was overpowering, and I was beginning to feel hopeless. I needed my health back like I needed air.

Three months after receiving the first dose, the pain began subsiding, and I began seeing those same "bad veins" quite differently. Instead of resenting them, I gave thanks for them. I knew my body could have easily rejected this new drug, but I was one of the lucky ones. Each month I watched as my miracle drug flowed into my arteries and, instead of medication, I saw possibilities....

Drip

Here's to helping myself out of bed in the mornings....

                           

                          Drip

...To playing tirelessly with my dogs, and bending down for sloppy kisses...

Drip

...To hugging my fiance without pain...

          Drip

...To getting in my car and just going...

    Drip

...To holding up my end of friendships, and weekends away with the girls...

                         Drip

...To the hope flowing through me. 

With this new perspective, came a new experience at my monthly infusions. Call me crazy, but I've actually begun looking forward to them! My mom accompanies me each month, and on the rare occasion when she isn't able, another loved one takes her place. I treasure this quality time with her, and feel so grateful to have her by my side. She's been there through the good times and the worst times, and I truly don't know where I'd be without her.

While the needles will never be enjoyable, I've come to appreciate a window of time intended just for me. For those few hours, I know I'm actively choosing to care for myself, to re-fuel, and to fight for my health. And, while I know my body could always stop responding to Orencia, I choose gratitude...gratitude for modern medicine, for my mother's loving hand, and for another month of relief.

Beautiful New Giveaway! Win A Handmade Heart Keepsake Box

No matter how wonderful our support systems may be, there is a certain loneliness that comes along with having a chronic illness. It's hard to explain unless you've lived it, but I suppose anyone who has had significant struggle in their life (health-related or not) knows what I mean. You can lean on other people, but at the end of the day, you are fighting this battle. Because of my struggle with multiple pain conditions, I probably require more "alone time" than the average gal. The truth is, I find tremendous peace in solitude and gain my greatest insight through reading and writing (hence, the blog). Of course, not everything I think is intended for the public eye. Stick with me here - this thought relates to today's giveaway...

I was excited when my friend Betsy introduced me to Susan Kosharek, a talented artist from Rochester, Minnesota. Susan owns her own company called Muse Zings and also has an Etsy store. My mother, who is an amazing artist herself, has always said she is drawn to artwork that "doesn't take itself too seriously." I've definitely inherited that tendency from her. For example, I just purchased a silly, painted zebra head on which to hang our keys. It's right beside our front door and just makes me smile every time I see it. Susan's work has the same effect on me. If you scroll down, you'll see several wonderful examples of her pieces (furniture, mirrors, birdhouses, etc) and I think you'll see what I mean.

And now the exciting part! Susan has graciously offered to host today's giveaway. I jumped at the chance, knowing you would all love her work as much as I do. And here's where that first paragraph ties in. Susan is offering a beautiful "Heart Keepsake Box" (pictured at the top of this post) to one lucky reader. This special box opens to reveal rice paper; a space to write personal messages, special memories, inspirational quotations, etc. I just love that idea! As I said, there are just some things that aren't meant for the world to see; poems, phrases, thoughts that need safekeeping. I can't think of a better place to store your treasures than in this beautiful box.

You can enter this giveaway a total of 3 times...

For entry #1: Go to Facebook.com, "like" Muse Zings, and don't forget to leave a comment on this post letting me know you did. If you don't have Facebook, then head over to Susan's website and take a look around. Then leave a comment on this post telling me what your favorite creation is.

For entry #2: Please give me a little feedback about this blog. What's working for you? What might you like to see me do differently? Are you hoping to see a post about something that I haven't covered? I'd love to hear from you!

This contest will run until Tuesday, October 11th (2 weeks from today). The winner will then be chosen at random and announced the following day. Good luck everyone!

Love,

Maya

Spotlight On Those Who Love Us: Marian Brown

My life has been blessed with incredible women, and my future sisters in law are no exception. I first met the Ferrarone family when I was 16. I was volunteering at Sunshine Rotary Camp - a special week for kids and young adults living with Muscular Dystrophy.  Each counselor was assigned to one camper and, although I never worked one on one with the girls, we developed a unique bond over those years. I was immediately drawn to their strong, beautiful sprits. Little did I know, they'd soon be part of my family.

Laura (21) and Sara (24)

While each of the Ferrarones have enhanced my life, they've also introduced me to a slew of amazing people. Marian Brown, for example, has been Sara's best friend for the past 19 years. She is a bright spot in all of our lives, and although she and Sara live far apart, distance is no match for this awesome duo. They are truly each other's chosen sisters and I love seeing them together. 

We're all better for knowing Marian, and today's spotlight will underscore that. Sit back, relax, and get ready to read about two remarkable women and the power of friendship.

Who in your life is living with chronic illness? Please say a bit about the disease itself and when they were diagnosed.

My best friend in the entire world, and my biggest hero, Sara Ferrarone. Sara was diagnosed with Friedreich's ataxia (FA); a progressive neuromuscular disease when we were finishing kindergarten. Her younger sister; who I consider to be my adoptive little sister, Laura, also has Friedreich's ataxia. Laura was tested for FA, and subsequently diagnosed, immediately following Sara's diagnosis (so Laura was two or three when she was diagnosed). Maya, the wonderful woman who keeps us all updated and educated via this blog, is engaged to Sara and Laura's older brother, John. So, the girls are her sisters as well. 

Friedreich's ataxia is an autosomal recessive genetic disorder. This means you must get a copy of the defective gene from both your mother and father. So, it's onset is birth, but depending on the exact gene you get the progression of the disease can differ. About 1 in every 22,000-29,000 develop this disease. Family history of the condition raises your risk. It is a very rare disease, and mainly affects the muscles and heart. 

Symptoms are caused by the wearing away of structures in areas of the brain and spinal cord that control coordination, muscle movement, and some sensory functions. Symptoms generally begin in childhood before puberty. 

As a child, I always described FA to friends as the following: It's like there is a small monster sitting on your spinal column that slowly chews away at all of the cords that lead to the rest of the body, i.e. your neural pathways, so that it becomes difficult for your body and brain to effectively communicate. 

If you'd like to know more about the actual disease and medical implications please click here.


What is your relationship like?

Every day I feel so blessed to have Sara and Laura, and the entire Ferrarone family in my life. I could not ask for a better group of people to call my second family, and to love eternally. Like all relationships that start in childhood, my relationship with Sara has evolved drastically in the 19 years we have known one another. Today, our relationship is centered around laughter. For the past seven years, I have lived 2,000 miles away in Colorado, so our main modality of conversation is emails. I wait anxiously as I open my gmail account hoping to hear from Sara. I find myself smiling as I get to read a page into her life. Today, she swims, horseback rides at Equicenter, bakes the best cookies in the world, makes scrap books for those she loves, and just brightens the world with her presence. When I come home to NY in the summer for a visit Sara always has epic plans set up for us. Last summer we spent countless hours at her cabin in the Adirondack Mountains making crafts, watching Glee, and talking about the woes and realties of life. We also went out venturing in their off roading four wheeler - quite the adventure! I'm not sure if Sara has recovered from my driving yet! I long for my adventures with Sara, and the wisdom and love that she brings to my life and all of the lives of those who know her. She has a fantastic child-like sense of wonder about the world, and a sensitivity to others that is unparalleled.

This summer, while visiting I had the privilege of meeting her new boyfriend, Kody. Kody works for a wheel-chair company, and they met when he came over to their home to repair her chair a few months ago. Kody’s involvement in Sara’s life has opened a whole new chapter for her. My boyfriend, Jon, also visited from Colorado. We had a great time at the lake house, and - like always - I smiled endlessly from listening to her belly laugh. Sara seems the happiest now I have ever seen her, regardless of different health ailments that bother her daily. 

Twenty-years later, I still remember the day we met on the bus like it was yesterday. There she was: long blonde hair, welcoming smile. Like always she had matching braids, and fantastic over-alls that were all the rage in the early 90's. Even at five, I could see there was something different about this young girl. When she spoke to you, she looked right in your eyes with her piercing blue gaze. She talked about her animals at home, about her parents, and her brother and sister. She was utterly aware of the world and the people around her. Just like today, her love and passion for the world were evident. Just like today, her understanding of the world was much greater then I could or will grasp. I got off the bus, running all the way home so I wouldn't forget her phone number, 586-5867. It's hard to believe it, but I think I internally recognized that day that I had met one of life's greatest gifts- a soul mate of sorts. The past twenty years between us has been nothing short of tremendous. The amount that Sara has taught me, and continues to teach me daily; about patience, honor, virtue, humor, love, confidence, overcoming obstacles, and countless others, will stay with me long beyond my days here on earth. 

Sara and Laura both currently live with their parents, in upstate NY, where they each have full-time aids. Their mother, Margaret, retired in order to spend more time with her girls. They also live with Belle, their gorgeous black lab and George, Sara’s ice chasing cat. 

Has your relationship changed in any way following their diagnosis? If so, how?

Honestly, I don’t feel that our relationship changed following Sara or Laura’s diagnosis. I was accustomed to being around people with chronic illness (my mother, Dr. Susan Taylor-Brown is a social worker whose academic focus was on HIV/AIDS related issues). It was  simply another aspect of life, that we would adjust to. 

Our elementary school principal wrote a story about us at our fifth-grade graduation. She talked about us walking down the hallway together. I was holding Sara’s suspenders, making sure she didn’t fall. We were laughing, simply enjoying the time with one another. That seems to be the way it’s always been. 

What has been the most difficult part of coping with your loved one's illness?

The most difficult part of coping with Fredrichs ataxia has recently been the difficulty in communicating. Sara and I have always generally understood each other, but it is becoming increasingly difficult for her to speak, and for me to understand her. Thankfully Kody and Sara seem to have it down pat, so he is able to fill in a lot of the gaps, as is Margaret and Jackie (Sara’s aide who has been with the family for many years). Still, part of what Sara and I love the most is getting out on our own- the two of us, and that is when the communication piece becomes more difficult. Thankfully, we type to stay in touch when we are apart, and we are adapting new strategies to be able to talk more effectively in person. Sara is just such a brilliant young woman and I want to hear everything she has to say. 

The other difficult aspect of the disease is the progressive nature of it. The changes seem small over time, but when you look at the mile markers along the way it becomes difficult to swallow. I have been so lucky to have both Sara and Laura in my life, and there is not a day that I do not feel that way. When Sara and I were in third grade, our parents were called into a meeting. The teachers were concerned that Sara and I were too close, and that it would eventually be detrimental to both of us as we grew up. I looked at my mother (she retells the story, it seems to have escaped my own memory) and my teachers and said, “We all only have one life to live. We are all going to die. Isn’t the price of loving someone eventually losing them? We need to enjoy the time we have with one another. Don’t take us away from one another”. 

Where do you get your strength?

Sara & Laura give me strength. Margaret and Bob (their parents) give me strength. Maya and John (the girls’ brother and sister-in-law) give me strength . My parents and family give me strength. My belief in a life well lived, in the power of laughter and love, give me strength.

I am able to process love and loss by connecting with my family, and also through doing my own cathartic art. I make sure to step back when needed, but also to be 100% present whenever possible; to remember that every moment truly is a gift. 

What advice would you give to someone who also cares for an individual living with illness and/or disability? What helps you?

Just remembering that every single day that you have with that person is a gift. It's difficult for all of us to constantly stay in the present, and in order to love someone with chronic illness, it's really crucial to. Planning too far in advance leads to upset as plans often have to be adjusted, and are difficult to make. Looking in the past can be equally as difficult as it make us sometimes focus on the losses over time as opposed to the triumphs of today. If it's possible to focus your attention on the present with the people you love, there are no added expectations, plans, losses, gains, failures- you simply are able to love and be with them. Sometimes with chronic illness, our biggest gift can simply be the time we have with those we love. 

Also, set up a much needed support network for both yourself and the people you love. We are human, and we can't do it all ourselves. Loving people with chronic illness is difficult at times, and you need to make sure that you have someone there to give you the equal support that you are providing those you care for. 

 If you could send one message to all the medical professionals in the world, what would it be?

Medical professionals- I appreciate and 
respect all that you do. Hopefully technology and research will reach a point where we understand these chronic diseases and illness more completely so that in return, the future can be a bright one for both those affected by the disease and illness, and those that love them. I believe in your ability to work miracles, I have to.