Molly Schreiber- raised in Fairfax, Virginia but has been in Baltimore, Maryland since 1997. She was diagnosed with Type 1 Diabetes at the age of 9, in the summer of 1988. Molly’s father, grand-father, and cousin all have diabetes as well, so she grew up knowing what a challenging and frustrating disease diabetes can be. For years she managed the disease with test strips and multiple daily injections.
In 2000 she got her first insulin pump and hasn’t looked back since. She is currently rocking a purple pancreas which is both an insulin pump and continuous glucose monitor. In case Type 1 Diabetes wasn’t a fun enough addition to her life, Molly’s immune system decided to throw in Rheumatoid Arthritis in the fall of 2011. This was a game changer for her and still is.
Daily Struggles with Rheumatoid Arthritis & Type 1 Diabetes
When most people hear “Rheumatoid Arthritis” they think of someone much older than my 36 year old self. They believe the disease is from doing too much. The true definition of Rheumatoid Arthritis couldn’t be further from the truth. Rheumatoid Arthritis is a chronic, progressive, autoimmune disease that causes inflammation in my joints and can eventually result in immobility and/or deformity. At the time of my diagnosis, 4 years ago, I couldn’t walk down the stairs in my home because my foot joints were so stiff. I couldn’t wash my face with my left hand because my elbow was locked in a straightened position. I also couldn’t even stay awake for a haircut because of the intense fatigue.
I’d like to say that, 4 years later, I’m doing remarkably well, but that would be a lie.
In my four short years, I’ve been on nearly every drug used to treat RA, from chemo to the newest FDA-approved therapies. After trying them all, I’m currently back on my original combination drug cocktail. This is one of the biggest frustrations about RA. Unlike Type 1 Diabetes (which I also have) where one drug, Insulin, is prescribed for everyone, in RA what works miraculously for one patient may do absolutely nothing for another. There is no standard of treatment as the “gold standard” therapy for RA care often doesn’t do much on its own and the side effects can be debilitating. I inject it every Saturday night. The injection itself doesn’t hurt and isn’t hard to do. Within hours of my injection, fatigue hits me like a train. I sleep for at least 12 hours that night and then take 1-2 naps during the day on Sunday before going to bed at 8pm. Trying to do anything is impossible as I feel incredibly dizzy. And the nausea. The nausea is incredible- I live off of ginger ale and Cheerios for the 24-36 hours following injection.
One of the biggest problems is that while you are experimenting with different medications, trying to find something that works to reduce your disease activity, your body is continuing to attacking itself. I have permanent damage in my elbow, hands, feet, hips, and knees as a result of a delayed diagnosis and the time wasted on medications that don’t work for me.
When you look at me, you may not realize that I am often in constant pain. I often cry on the way to work and on the way home. I am up at all hours of the night, writhing in pain. My freezer is half full with ice packs of various sizes. I own compression items for every body part you can think of. I also have creams, sprays, and patches. I have a TENS machine. The majority of life is either preventing or dealing with pain. I am constantly accessing how I feel.
The pain I have felt with Rheumatoid Arthritis isn’t comparable to the 2 cesarean sections I’ve had, dental work, broken bones. It is incredible. Aside from your joints hurting, your entire body aches. The only way I can describe it is the feeling you have the day after being in a car accident coupled with the awful body aches you get with a bad case of the flu. I am lucky to be under the care of a great pain management physician but I know of many that suffer in silence due to the lack of access to proper care and/or the stigma associated with taking pain medications. Pain medications help me to keep working full-time, care for my family, go to the gym…live my life.
Despite all of this, I force myself to remain positive. I try to find humor in everything- my husband always likes to say how “tough” my compression gloves make me look. I try to remain active- I go to the gym as often as I can, even if I spend my time afterwards covered in ice packs. My disease has allowed me to connect with thousands of patients and if just one of them is encouraged by my story, all of the pain and fatigue has been worth it.
Thank you Molly for sharing your inspiring story!
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