It started with a phone call. “Ma’am I’m sorry to tell you this but you might have rheumatoid arthritis, we need you to come in as soon as possible for further tests.” My heart sunk. What now? What will become of my future? Do I have a future? What about my son? Who will take care of him if I’m sick? I knew nothing about rheumatoid arthritis other than the joint deformities and pain.
Pain.
Now a days I’ve learned to cope with the pain. There’s pain and then there’s pain that reduces you to nothing but tears. In the beginning I thought the pain was bad but I had no idea what was to come.
My name is Angie or you might see a lot of my screen names ” bttrflyculture “. I am 22, I’ll be 23 in April and I’m married to my hubby and we have a beautiful 3 year old boy. I got diagnosed with Sjogrens Syndrome in January of 2015. I guess my body can’t make up its mind if I have lupus or RA or both because not all my symptoms line up.
I originally went in to see the doctor because I had bad skin irritation and thought my gall bladder was acting up.
When I was pregnant I had cholestasis and caused nasty itching. My husband and I were trying for another baby at this time so it made sense. Maybe I was pregnant? So I went in, got blood work done and was told it was probably dry skin and got sent home. A few days later I get a call and they said my makers were elevated and it’s possible I had rheumatoid arthritis. I thought “No this has to be a mistake. I’m only 21. There’s no way. I’m too young for this.” Then some time went by and all the pain began. I couldn’t open containers, jugs, doors, my hands were curled up and in pain. We started with just plaquenil and a saliva medication which for the life of me I can’t remember. (Thanks brain fog!)
Fast forward to March:
My husband and I never thought we conceived back in January. I had taken multiple pregnancy tests and they all came out negative. After I got my diagnosis, obviously we stopped trying and I got back on my birth control. I started feeling funny towards the end of February and started having a strong craving for sweets (banana pancakes to be specific) and blue Gatorade. I took a test and to my surprise it came out positive. My heart sunk. I was excited, nervous, scared. All of the above. On Friday I started getting some funny looking discharge but I didn’t think anything of it and went about life. Saturday, went to a family party and told everyone I was pregnant. Everyone was so happy and excited for us. Then life happened.
Sunday I went to the ER because of the discharge and they ultrasound tech said he didn’t see a heartbeat but I was 7 weeks and 3 days and that was normal. The doctor said the discharge was from an infection and gave me a gel to use and said to see my doctor asap. I called my OBGYN and they said they couldn’t see me til next week. Appointment day finally came and I went in and they told me If there was no heart beat then I had lost the baby already. I wanted an ultrasound just to make sure. I didn’t want to believe it. I didn’t even cry because I think my body was in such shock. I got all hooked up on the ultrasound machine and there she was. My baby was just there and not moving at all. Just still as could be. I saw she because I feel in my heart it was a girl. Even to this day my son talks about his sister and we’ve never talked with him about any of this.
On March 18th 2015 I had to take the pills to induce the miscarriage because my body wouldn’t register that I had a miscarriage. It was the most heart breaking night and painful night. I’ll never know why I lost the baby. I have a feeling it was either all the medication and medication changes or my body just attacked the baby. I think after that I just really wanted to give up on this body that had betrayed me so much already.
A year later and the oral medications still aren’t doing enough to help me so I have to give myself weekly injections of methotrexate and if that doesn’t help then infusions will come next. After that I don’t know what other options there are. I feel as though I’m running out of options.
As spoonies, we go through all these real life, raw moments and we keep going. We are strong warriors. If you have gone through this or worse then I salute you. You keep your head up and I hope my story will reach someone and help someone believe they aren’t alone. All I hope to accomplish with my writing is to help someone get through their rough time. This is all for you.
