Perpetually on Pause

Welcome to the new year!2022! A time when you’re making resolutions and learning from the last year. A time when you are making goals and setting your sites on moving forward. Yet I’m perpetually paused. Honestly I have been “paused” for close to 2 years now. When the pandemic hit I rolled with the punches until I couldn’t anymore. At some point along the way things went on pause. My goals, my plans. My aspirations. ME. It’s just what needed to happen. I needed to pause in order for everything and everyone else to move forward. At least that’s how it feels. And anytime I tried to move forward in a certain direction something else would inevitably find a reason to put me back in pause mode.

Pausing to reflect

Reflecting on that last paragraph is hard because it forces me to admit that I did indeed pause. Despite feeling like I haven’t stopped moving or “doing” in about two years. It’s humbling to admit. And I am not saying that the last two years were miserable. I was blessed to have extra time with my family and create new memories with them. But again while all that continues – I’m on pause.

Being on pause for someone like myself really is a frustrating thing. If you know me personally you know I am a problem solver. I like things fixed. I like to solve the issue and move forward. That’s probably why being on pause frustrates the hell out of me. I feel like nothing is ever solved. Nothing is ever finished before the next issue comes and slaps me in the face.

2021 had its share of challenges for our family. My husband lost his job, politics and mandates started affecting our lives, and relationships with friends were strained or completely broken. But I still was determined to move forward and be positive. I was determined to set out and continue to create the family and happiness that I wanted, starting with expanding our family.

A long battle with Fertility

I have shared before, but in case you are not up to speed – I have always had a difficult time getting pregnant. Being 1 of 11 that might surprise you but it’s true. If you would have asked me as a teenager what my life at 31 would look like, I would have replied something along the lines of – I have 4 or 5 children, a job I love, an amazing marriage, and I am loving life. While some of those things are true (an amazing marriage, although far from perfect) there’s a lot missing from that picture perfect life that I painted for myself. I never thought I would only have 2 children after almost 10 years of marriage, no job due to crippling back and nerve pain, a child with a rare disease, and even more about to be loaded onto my plate. That’s the thing about life though. No matter how hard you try to paint a perfect picture for yourself, your plan isn’t God’s and it never will be.

I always new I had fertility issues and with both the kids going back to school I finally made it a mission this last year to get my health under control and to get to the root cause. For almost 6 months we saw a NAPRO fertility doctor to try and figure out my issues – which we are finding out are many. Adenomyosis, endometriosis, polyps, irregular bleeding, lack of ovulation, and chronic unexplained inflammation in my uterus. Despite all these things my doctor had a plan to get us pregnant and we were thrilled. I never wanted to have big gaps in between my children. However, this wasn’t God’s plan. He’s pretty particular about his plans for us it seems, and lately trusting that is harder that I thought it would be.

Trust your body

In the last three months every single time we were ready to do our first round of trying, something happened. The first time there was a scheduling issue. The second time my bleeding was to bad and they needed to perform a hysteroscopy to make sure everything was okay before moving forward. The 3rd time may OBGYN had covid. PAUSED. Every single time we were so close to hopefully having our third child we were put on pause. I finally thought this month would be it but I could not be more wrong.

In the last 3 months I have started to feel horrible. Chronically fatigued, my muscles and joints throbbed, ached and were swollen. I couldn’t sleep, my hair was coming out in clumps, and I could feel inflammation everywhere in my body. I remember in September telling my mom I just feel inflamed, something isn’t right. Nothing I did made it better and I started to be concerned that I had rheumatoid arthritis. I decided that I was going to see a holistic doctor recommended to me by my brother to try and figure out what was going on.

Pause for answers you don’t want

One thing I will tell anyone is to always trust your gut and listen to your body. Your body has subtle cues and signs to help you realize something is wrong. I finally had an appointment with the holistic doctor and I gave her my entire history. All of my surgeries, pregnancies , chronic issues. We went over everything. I began to describe to her how I have been feeling and my suspicion that I have RA. She agreed that we needed to do extensive bloodwork to try and figure out what was going on with me. So off I went. I had nearly 30 tubes of blood drawn which would test for anything and everything under the sun.

Shrek movie night before my phone call

I knew something would come back on my bloodwork because I know my body and I knew what I was feeling for the last 3 months was something that needed attention. A few days before New Year’s Eve I received a call in the evening from my OBGYN. W were set to do the fertility trigger shot the very next week. FINALY! I answered the phone and she asked me if I had gotten a call from my holistic doctor. I told her no, to which she was silent for a few seconds. “Some of your bloodwork is back that she ordered, we need to pause fertility treatments”. I was in the middle of a Shrek movie marathon with my little family and had to go into a different room.

Accept it’s autoimmune

Did I really hear her right? For the 4th month in a row something is getting in the way of us getting pregnant. My OB explained to me that a lot of my inflammation markers were very high and that she was concerned. I wasn’t surprised because I literally can feel inflammation in my entire body that was never there before. “Theresa it looks like you might have an autoimmune disease. You need to be evaluated for Rheumatoid arthritis and Lupus.”

Lupus ? No. RA was on my radar, that’s what I thought it was from the beginning. That was a possibility in my head, not lupus! My only memory and experience with Lupus is of my aunt. My entire life and memories of her were of how sickly she was. I couldn’t even respond on the phone. I didn’t even no what to say. My OB continued to tell me that it would not be wise to try and get pregnant before having an official diagnosis. I felt defeated. PAUSED.

Your plans are not your own

After getting off the phone with her I just sat there and stared. I don’t even know what I was looking at. I honestly was in disbelief. But of course, right away I went into solving mode. Okay so what’s next? Who do I call? What’s the next step? My mind was flying and for the moment I was okay with that. It distracted me from remembering that the growth of our family would be paused for who knows how long.

Of course I immediately looked up my labs and started looking up what the values meant and that made me feel even worse. My autoimmune markers were positive – one of which indicates whether your body is attacking itself – and mine is. Over the last few days I’ve gone through several emotions, the most prominent being anger. I’m angry that my life is paused yet again and my body is failing me AGAIN. I’m angry I have to give up so much when I already have been down that road. I gave up a career I loved, sports I thrived in, and now possibly the one thing I have left – being a mother to more children.

Where to go from here

As anger continues to reside in me I have made the necessary calls and I am currently waiting for blood work to be done which will hopefully confirm whether I have Lupus or RA. Once one is confirmed we will find out the next steps and what this means for me and our family.

So while many people are starting New Years resolutions and guiding their new year with positivity, while I’m paused. I went from thinking of baby names and whether to buy a pregnancy style dress for my sisters summer wedding – to how will I live with another chronic issue and still be a good mother to my boys. Self doubt floods in like a tidal wave and while I know I have my faith it is once again being tested.

XOXO
Theresa

6 thoughts on “Perpetually on Pause

  1. Hi Theresa- I’m not sure if you will actually read this- but I truly hope you do. When my son was diagnosed with BWS- I did not know what to do. I searched and searched online- I had so many thoughts and I found you. Till this day you have been my inspiration and motivation in ways you couldn’t even imagine. You mention that you let go of your career- but I think you fail to forget how many lives you have impacted. How many people you have touched. I cried every single day and in every tear I read your stories- your community- the hardships and it gave me light. Till today I speak of you and I only hope to meet you one day. I look at your family and they are beautiful! Two kids are a blessing and when a family of 4 takes a picture together- I see it as a FULL family! My mom always taught me that some people are meant to suffer from more then others. Feels like a Dejavu reading this as I have two children of my own(boys) Eli is 5 and Liam is 1 1/2 (BWS Baby) and I had recently found out I was pregnant. All my husband could speak of is having a baby girl. I had so much nausea and just happy thoughts- could this be real! I went to the doctor today to find out it’s an abnormal pregnancy- need additional ultrasounds completed and blood- and if confirmed I might have a tumor in my uterous that needs to be removed immediately. I was just blank. I feel that my whole life always comes with the worst news. I lost my father to HIV. My brother passed away in a car accident 2 weeks before graduation. Although my mom is physically alive she passed away emotionally after my brothers death. My pregnancies have not been easy and several miscarriages. My last born- BWS is not easy. So I as well as you look back to my life and question WHY? I think and think! And all I can say- is I will get through this. And, “I can do everything through Christ that strengthens me.” With a virtual hug to you- I pray that your results show nothing but good and if they require treatment that it will be minimal and if you want your 4 to 5 children that may God work on making that happen for you. I just hope you realize how special and important you are-but most importantly thank you for being a major instrument in my life. I do hope that Owen and Liam can meet one day! God Bless! Xoxoxo

    1. Crystal. I don’t think you realize how much this message touched my heart especially after just receiving a not so nice comment regarding my feelings from someone else. You have made my day and I’m so glad our families journey has helped yours. Please message me on Instagram or Facebook so I can give you my number. I am so sorry for what you are going through and my entire family is praying for you ❤️❤️

  2. I just want to say thank you for sharing your story. Thank you for sharing your pain. I’ll pray for you and your family and send love.

    I started following rare disease moms last year after my child received a diagnosis and a mystery child still. My deep dive also made me realize the symptoms I have. Our journeys have a few similarities. I’m also on a reduce inflammation. Hoping that we can each find answers or at least Peace.

    1. Thank you Vandee. I appreciate your kind words. I’m so sorry your dealing with something similar on top of having a the challenges that come with a child with a diagnosis . You can contact me anytime if you need to vent !

  3. I hate this for you. I hate that bad things happen to good people. I know how it feels to have these hopes and dreams and for them to be taken away. It’s like a death. You must grieve. Your feelings are valid. I personally feel like I’m in an ocean and I’m doing okay and then a big wave comes and hits me again. But I get stronger with each one. Know that I’m always here for you. Your IG buddy. ❤️

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