I have a confession to make……
I miss Running.
I miss running fast.
I miss competing.
I miss waking up and not feeling like I’ve run a marathon when I’ve done nothing.
I miss having a body that works the way it is supposed to.
Yes, I am having a pity party today. It happens from time to time. You would think after 7 years of having Hypopartyhroidism that it wouldn’t, especially when I know how lucky I am compared to others that struggle so much more. That being said, my struggles and pity party don’t take away from their struggles or any struggles you are having. We all have our baggage filled with things we wish we didn’t have to carry or wish on anyone else.
Here’s the thing…..
I am tired of constantly having low serum calcium levels and all the fun that brings (said with heavy sarcasm).
I am also tired of at the same time having high urine output calcium levels and all the worry and stress that comes with that. Like waiting for the shoe to drop but the shoe is kidney stones and damage. Just waiting…. never sure if it is coming, but knowing that you have to be prepared. Like the unwanted visitor that says they are going to drop in but you aren’t sure if they really are coming and if so when they will arrive.
The stress is real.
The worry is real.
My feelings are both real, valid, and in hypopara community probably more widely shared than people outside it realize. Anytime you have a rare out of the box diagnosis, it is hard finding the care you need. It’s not that the doctors don’t care, but they might not understand and just look at the numbers. The numbers don’t always tell the story and often you feel like you are hypochondriac. Often the doctors will make you feel that way too (insert any rare disorder)
Lastly….. I miss going to doctors and feeling like they know what they are supposed to know to treat me. I never questioned that prior to 2016. I’ve learned since then that if you are outside the box, they might think they might know more than you but chances are you’ve done your homework and they might not have. Now don’t get me wrong, I know in the whole scheme of things they know more than me but when it comes to me and my diagnosis I’ve probably done more research than them.
I’m trying to find a doctor that I can go to and know they know what they know, but when you have a NORD (National Organization of Rare Disorders) diagnosis that is often harder than it should be. I will further add that insurance is also a stomping block as is the cost of treatment, but those are a whole different post/issue.
So I’ve been struggling. I’ve been keeping it all in. I’ve been quiet in my communications, but I’m trying to climb out of my shell, be open and honest, and put it all out there. We all have our struggles. We all feel like we don’t want to burden others. We all feel like it is our burden to carry alone, but the truth is that when we share these burdens with those in our lives (don’t worry I’ve done that too)…… while it doesn’t make them go away, it does seem to lighten the load.
So if you are carrying a burden…… If you are struggling (with ANYTHING)……. If you feel like no one will understand…… If you feel like everyone has their own shit and you don’t want to add to it with your problems………. You might just find, that they want to know. That they are there for you and that being there for each other in the good and bad is what makes your tribe your tribe and if you don’t think you have a tribe reach out to someone and you might be surprised.
2 years ago I was diagnosed with hypoparathyroidism. I didn’t even know the disease existed. The doctor told me what I should do and sent me on my way. Feeling very lost, I became my own advocate finding out all I could about the disease. Two years later, a month ago, I went to my doctor for a wellness check for my insurance only to hear from her that I now had stage 3 CKD caused by the damage done to my kidneys by hypoparathyroidism. I am reeling because I knew nothing about this. I am with you that we need doctors who know about these “out of the box” diseases so they can help us and not blindside us when it might be too late.
I have found a great deal of information, knowledge, and comfort from the Hypopara Association (https://hypopara.org ). They have a website and facebook page. I think without them and some other facebook groups I would have had more serious issues by now…. Especially because my first Endo had me on a MUCH higher dose of calcitriol and calcium keeping my serum levels in the 9’s……. Which I admit felt wonderful, but we know long term that is not good.
Thank you so much,