This week has been really tough physically and emotionally. I knew I needed to write a blog post this week and I kept struggling with what to write. I was struggling if I really wanted to share what’s truly been going on with me this week. God kept nudging me so here we are. The words that kept coming to me were I feel like I’m underwater and my voice is being heard but it’s not coming above waters. I’m not talking about my voice at work or with family and friends. I’m talking about my voice with doctors and with myself.
Since July I have been dealing with what we thought was gallbladder pain. After some check up appointments and tests we were beginning to wonder if I would finally have an answer for this abdominal pain. I met with the gallbladder surgeon and my symptoms weren’t matching gallbladder symptoms. As we got talking we realized the strong prevalence of gastrointestinal issues that occur in people with chronic illnesses. There is a very strong tie of gastrointestinal diseases with POTS. We are thinking that is what is going on. My family doctor has been doing a lot of work behind the scenes and I’m thankful for that. If you’ve never had to deal with a referral process when you’re in constant pain then you’re very lucky.
This waiting is hard. I don’t have an appointment yet. I’ve seen this gastroenterologist before I was sick and after I got sick. He is a very good doctor. I’m supposed to wait a week to hear from their office and if I don’t then I need to call back to my pcp. I’m assuming it’s going to be a few weeks till I can see the doctor. Right now it’s hard because I have nothing to try and get through. It’s almost the end of October and I’m still stuck in this unknown. I don’t know when I will get seen and I don’t know if this pain will end or if it’s chronic. Usually when I feel “lost” or upset I can work through those feelings eventually and be ok. This week has been a hard hit. I’m not sure exactly why. My tolerance for this stomach pain is getting weaker. My stomach hurts. I can barely eat anything because I feel instantly full and bloat so bad. Let me just give you a glimpse into what’s happening. I started noticing that I bloat even more after just a few bites of something so we’ve started weighing myself at the beginning of the day and after supper. The other day I weighed myself right before supper. I ate a small supper and I had the exact same stuff on when I weighed before supper. I stepped on the scale and I had gained 5 pounds in the matter of like 30 minutes. One explanation -the bloating.
My body is getting weaker and it’s scary a little bit. I don’t get scared or worried a lot since much of it is out of my control. This month I’ve become a bit scared. I don’t know when this pain will end. I don’t know if I’m looking at chronic pain in my abdomen or if this can be resolved. I’ve tried eating different things and it doesn’t matter I bloat no matter what. I’m in constant pain like a 7. It just hurts- like it feels like my abdomen is getting squeezed and someone is sitting on it and it is extremely crampy and full. The bloating is crazy. I feel like I’ve voiced my concerns to the doctors but maybe I’m not urgent enough. I’ve told them I’m barely eating and that I’m losing weight but I’m just here waiting. I feel like I’m under the ocean water yelling for help and all anyone can hear is a soft “help”. I keep trying to swim up but I get exhausted every time. I’m just floating around in the middle of nowhere .
This is getting hard because the rest of my body is feeling awful too because it’s trying to deal with this stomach pain and everything else. Everything has doubled. I’m getting more migraines (thanks to all the rain) , and I’m tired all the time. I do as much as I can to distract me from the reality of what my body is doing. I don’t want to think about it. I haven’t really let myself process this and I definitely avoid the yeah but if this happens what if that happens, etc. This time of year is just hard. November 8th will be 6 years since Dad has passed. Your muscle memory doesn’t forget and you feel anxious almost every day. This year has been especially hard because around Thanksgiving will mark a whole year dealing with this low grade “suspected auto-immune fever”, ranging from 99-103. There’s a lot on my plate, and my plate is too full- it’s overflowing. I know I need to sit down and face the feelings. I need to just be still. I keep reminding myself to just be still.
These 2 songs came to me instantly before I started writing. In the old house in my room I used to have the lyrics to this song above the windows on colorful paper. It’s called Let The Waters Rise by MIKESCHAIR. You can listen to it by clicking the link to view it on YouTube.
This one is by Avril Lavigne who deals with lyme disease. She wrote this song during the roughest time with her lyme. It’s called Head Above Water by Avril Lavigne
“Be still, and know that I am God. I will be exalted among the nations, I will be exalted in the earth!”- Psalm 46:10