Today, is world prematurity day. Prematurity sucks. Medicine has come along so much over the years, but it still sucks.
It sucks knowing your baby will be born early. It sucks worrying about their chances of survival. It sucks waiting to see if they’ve survived birth. It sucks watching them suffer. It sucks not being and to hold them for days or weeks. It sucks leaving them behind and going home. It sucks walking in and seeing serious faces and wondering if it’s about your baby. It sucks being called into the private room to talk about your baby. It sucks being told they will be brain damaged if they survive. It sucks being told your baby died and was brought back. It sucks seeing your tiny baby cry silently through the vent. It sucks watching them have seizures over and over again. It sucks making choices which could be so wrong. It sucks telling them to remove life support. It sucks watching your child die. It sucks knowing you have to say goodbye. It sucks wondering if they might have survived. It sucks carrying the coffin of your firstborn. It sucks grieving every day. Boy does it suck.
It doesn’t have to be this way. We can prevent many causes of prematurity and many of the causes of neonatal death. So others may not have to go through that. Like I did.
I can’t pull myself up out of the haze. My resting heart rate had been a little low today with lows of 52. Now, I know I’ve been hyper for years, but that seems quite low. So I wonder if my thyroid isn’t quite functioning as well as it should. Plus, I’ve read that once your body is used to being in a hyper state, it no longer functions at normal levels of thyroid hormone. It resets its normal. I don’t know until the 4th December if my right thyroid needs help. But I’m so tired and quite low, so at least it would be an easiesh solution. But since nothing is ever easy, I doubt it.
I have been feeling so unwell, stomach pains again, excessive bloating and discomfort that I tried to fast a bit today. Its the only thing I know that actually helps. But it was difficult.
My scar had been sore. Sore, a bit red. Probably nothing, but I rubbed some cbd rub into it. Which helped.
It’s weird, I haven’t had low mood in ages, but life throws grenades at you, with my surgery, marital problems, financial issues and poor health, I struggle to keep my head above the water, my smile on my face and hope in my heart.
If I could sum up how I feel right now, it would be… Somethings coming. I thought it was thyroid cancer. I feel like I’m waiting for something but I don’t know what. I can’t explain it. I hope it’s just hypothyroidism. Well not “just,” but easier to fix. Hopefully
Recovery is going great. My scar is healing very nicely. It can look red because I’m so fair skinned, but that’s normal.
I walked the walls of our local castle this weekend. I’m a bit less fit than I was before surgery, but I’m getting there. I’m very tired and my muscle twitches returned with a vengeance this week, treated of course with cbd oil. I don’t know if my thyroid is functioning optimally or not.
Due to a lull in work, I’ve been able to spend time editing my recent book. Collecting info on characters and plot, pulling scenes apart like an old jumper. I want to get that published in the new year. There’s a lot I want to do. And I don’t want to keep putting everything off. Writing is my calling, it always has been. And I’ve put off all this stuff for me, for so long, something has to change. If I want to make a living writing, I have to fill my life with writing. And getting my body to optimal health, whatever that means for me.
And not staying up until 1:30am arguing on Facebook.
So that probably means I should sleep
I had my follow up appointment today, and yep, no cancer. He actually hadn’t looked at the results until I was sat right there. It said something about follicular cells and no evidence of vascular something. And it was 6cm x 5cm x 5cm It’s actually all done with. He discharged me from the ENT clinic. Unfortunately my last blood results didn’t go through, I don’t know if they lost the sample or something but whatever, it didn’t happen. So I don’t know if I’m hypo or hyper or euthyroid. I have an appointment with endocrinology in December so we can assess that then.
It’s a bit weird. Years of this thyroid causing issues, worrying about growth, worrying about the surgery and its all done with. I feel almost lost, it’s hard to explain. I can move forward and try to sort out my other health issues. Claw back health. I don’t know. It’s a tired sort of day. I need to redefine myself, healthy, fit and strong.
I think I put a lot of eggs in the thyroid basket. I had a lot of hope of things improving and changing. I knew half of it wasn’t going to happen, but it made it easier if I thought “maybe once my thyroid is sorted…” and of course, most of it hasn’t changed. I still have major reflux, stomach issues, lymph node pain, fatigue, some shaking, although less, joint pain, headaches… And I’ve got to accept that they are my life. They aren’t being cut out with the thyroid. This is me and I need to do my best to help the best me live my best life. Whatever that means.
We took the kids to home Ed group today, they saw their friends and had fun and messed around. And we ended up waiting for 1.5 hours past my hospital appointment to be seen. So they were very restless by then. And it took 5 minutes after all that.
To another day. And better health.
Today, was not a good day. I had a flare up of a long standing stomach issue. I knew something was up when my tinnitus was bad, always a sign of imbalance for me. I also had a feeling of something in my throat. Then after lunch I felt really unwell, absolutely exhausted.
I pushed through and took the kids out for a walk. It was beautiful, my youngest was just starting to get digging with her spade in the sand when the heavens opened and it started to pour down with rain.
We ended up at the local cafe, where my children, hyped up on far too many Halloween sweets, drove me to distraction. Then my husband arrived. Then my mother and we decided to take the hyper ones home. As soon as I left the cafe the downpour started. By the time I got home I knew I was in trouble. The pain is awful. my stomach feels like it’s burning up inside, my lower abdomen feels like a cross between the worst period pains and food poisoning. My lower back is in constant, unrelenting agony. It’s not functional, it doesn’t change if I move, it just hurts constantly. A hell of a lot. I took to bed after the kids went to bed and slept an hour or two.
These episodes are increasing, they used to be rare, I don’t know the trigger. Sometimes I wonder if it’s high fat foods, or too much protein, or too many carbs.
I wonder if I have GERD or an ulcer, or h pylori. Or if it’s gallstones, just ibs, pcos, I don’t know. Nothing fits everything at once. But the pain. The unrelenting pain. It’s not like the pain from my connective tissue disease. But I know something isn’t right. I just don’t know what. I feel like I’m working through departments at my hospital. Trying to get my health back on track. And it’s not working. I feel like crying. I hoped the thyroidectomy would be my miracle. But it wasn’t. And I am tired of all the health issues and what ifs and pushing through life in pain.
I am tired. And I try to stay positive. A lot. I do. But wow I need a break.
Here is what my half thyroidectomy scar looks like after 3 weeks.
Pretty good really. And my scar from the drain is OK. Still bruised.
I’m just really looking forward to this being all done. I know that I will need my thyroid monitoring every once in a while. But probably not every six weeks like it has been for years. Monday, hopefully, it’s over, all going to plan, it’s thyroid ticked off my list of things that needed sorting. I’ve been worrying about it all for years. I’ve known I would need the surgery and it’s hung over me, like a bad smell for a long time.
If I can just get my weight down for good, then that’s my next thing. Fitness, health. I’m quite frankly terrified they are going to tell me it’s not over. I want it to be. But I also want all the years of pain to have a cause. A cause that makes sense. I’m not sure that a benign thyroid nodule can cause the kind of pain I’ve had in my thyroid region, and my lymph nodes in the neck and collarbone region. And they haven’t gone away. I have to acknowledge that is something I’m living with forever. Or it’s caused by thyroid cancer. I feel conflicted and afraid the closer I get. The search for answers with chronic illness never ends. Obviously, I do have the undifferentiated connective tissue disorder. I have some major autoimme antibodies in my blood. But some of my symptoms never quite fit in. I don’t know. I’m just fretting. Full of frets and fiddle de dees.
I painted a galaxy rock but in watercolor and its not so bright as its like.
I should sleep. I’m tired and I have two children and a huge stash of Halloween sweets to keep me insane tomorrow.
So 3 weeks after surgery and I’m doing well. Recovering. I still have pain on the side that my thyroid was removed, while swallowing. A deep pain, but I don’t think it’s an unusual result of thyroid surgery. I will talk to my ENT about it when I see him next Monday. Unless it’s gone.
I still have some minor stiffness and my lymph nodes hurt around it. But again, all normal stuff.
The scar is healing really well. And I feel really positive about my follow up appointment. I don’t want to be thy girl saying its not going to be cancer and blindsighted, but I feel a good 80% certain it’s benign. Even 90% some days. I just had a feeling of, we’re good. No big deal. I mean statistics were always on my side anyway. So, I’m going in on Monday with my head held high (ish. As my neck is a bit stiff) and positivity.
Tomorrow, is Halloween. My 5 year old is a witch. He has a lovely dress and hat and my 3 year old is Dracula. She has a dress and wings. I’ve been promised extra hours at work so I’ve been working extra hard. And my son has really got into painting. I painted another rock, getting to get ready for Christmas.
But I’m busy and I like it that way. Although I did enjoy… No not enjoy but maybe appreciate the time spent doing nothing after surgery. I’ve not been truly idle in a long time. I’ve always been the responsible one. Always something that needed doing. For a few days I was able to let go off it all. It was weirdly therapeutic.
The clocks went back and messed up my children’s happy sleeping routine. And now the small one is back to a very grumpy self we haven’t seen in a while. And I’m not pleased. It’s exhausting.
I might try to take them for a walk tomorrow. If I think I’ll manage. The weather can be rough at the moment and I get cold urticaria of the wind chill is awful.