hawkward
Global Moderator
Loss, Infertility
Posts: 19,638 Likes: 123,092
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Post by hawkward on Jan 30, 2024 19:13:40 GMT -6
My surgical speciality is urology, hellosweetie. I assist with many many uro procedures in a week, often stents and lithotrispy. I absolutely would not accept that as an answer for the fainting, etc. I’m really sorry for what you’re going through. I am very prone to urinary infections and have been battling them my whole life. It's very probable that the removal was responsible for triggering or aggravating an infection for me. The fainting was because I was dehydrated and walking around close to septic they said. Ohhhh, I see. I read too fast. Yes, an infection plus plus dehydration would definitely be a reasonable explanation.
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hawkward
Global Moderator
Loss, Infertility
Posts: 19,638 Likes: 123,092
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Post by hawkward on Jan 30, 2024 19:15:44 GMT -6
AmyG I thought of you today. I got to assist in a piriformis injection for this first time. It was awesome.
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AmyG
Ruby
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Post by AmyG on Feb 10, 2024 22:57:23 GMT -6
SI Joint injection on 31st was denied by insurance due to pain dr not doing testing, or basically barely mentioning si joint pain in my records. Pain Dr on Weds I'll see what's up with si joint injection at this point, but with pelvic floor injection scheduled March 1st I don't wanna get too many procedures/not too many injections due to cost mostly, but also how do we know what works/doesn't work if they overlap too much.
Colonoscopy on the 7th and I've had bad pelvic floor pain and numb leg, nerve pain ever since. so that's not fun. they asked if there was any reason I couldn't lay on my left side, so I told them if I lay on my left side for very long my left leg would go absolutely numb, and they said ok, great, there's no reason you can't lay on your left side.
Just a bit of complaining,
Off to try my nerve stretches/nerve glides some more to see if I can get them to settle down already.
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hawkward
Global Moderator
Loss, Infertility
Posts: 19,638 Likes: 123,092
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Post by hawkward on Feb 11, 2024 7:17:39 GMT -6
AmyG that’s so frustrating. We have been having a hell of a time with insurance for patients lately too. That really sucks about your colonoscopy. There are options besides side lying. It’s harder but not like impossible or anything. We always ask if there are any positioning issues before the patient goes under. Hopefully you get some relief soon.
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AmyG
Ruby
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Post by AmyG on Feb 11, 2024 12:22:41 GMT -6
AmyG that’s so frustrating. We have been having a hell of a time with insurance for patients lately too. That really sucks about your colonoscopy. There are options besides side lying. It’s harder but not like impossible or anything. We always ask if there are any positioning issues before the patient goes under. Hopefully you get some relief soon. Well the pain dr didn't really mention si joint in my records so I understand insurance asking so um did you examine the patient for si joint problems? If they'd rolled me off my left side as soon as colonoscopy was done like I asked it would have meant the pain in butt and numb leg nerve pain wouldn't have lasted so long. As soon as I woke barely I did roll to my back because that's what I do in my sleep as reflex now. laying on my left side is my favorite side so I roll there and then the pain starts and I roll over before the nerve/numb starts.
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AmyG
Ruby
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Post by AmyG on Feb 21, 2024 10:41:53 GMT -6
How's everybody else with chronic condition including chronic pain? I should go back thru and tag so I can be more specific in checking up on everyone. I'll add that to my to do list. I do care to hear updates good/ bad and venting/complaints too.
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AmyG
Ruby
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Post by AmyG on Feb 21, 2024 10:47:46 GMT -6
As for myself insurance actually approved si joint injection the day the dr office called to cancel. So by the time I got notified well instead of inj on Jan 31 I got it today feb 21st.
I'm laying down flat right now in my bed. Injection wasn't horrible without sedation. Buy it was definitely a raise head off the table and say wow with a bit of a moan.
Right now the whole area hurts like it does on a bad day and toes are extra tingly/ numb whatever that means.
Likely the pelvic floor botox will be rescheduled again due to insurance. It's supposed to be March 1st.
I'll call tomorrow to see what's up. I don't see any requests for approvals on ins online but all I can see is reauthorization request # 12345 has been received, denied, or approved. Not even any words as to what #12345 is about.
Update si joint injection my body really complained. More vicodin in last 24 hours than in a very long while. Ouch. Trying to walk and slow stretches today but maybe not
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Post by Kenny1980 on Feb 21, 2024 12:37:26 GMT -6
AmyG thanks for checking in! I met with my endocrinologist on Monday and we decided to try the enzyme replacement therapy for my hypophosphatasia. The medication is stupid expensive (1-2 million a year). So I expect a battle with insurance to approve. I'm hopeful once I get going on it that my pain levels are reduced. I was told it would take up to a full week to see the SI joint injections take full effect. Hopefully that provides some relief for you.
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AmyG
Ruby
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Post by AmyG on Feb 21, 2024 12:48:03 GMT -6
AmyG thanks for checking in! I met with my endocrinologist on Monday and we decided to try the enzyme replacement therapy for my hypophosphatasia. The medication is stupid expensive (1-2 million a year). So I expect a battle with insurance to approve. I'm hopeful once I get going on it that my pain levels are reduced. I was told it would take up to a full week to see the SI joint injections take full effect. Hopefully that provides some relief for you. That price is so stupid expensive! Hope insurance plays nice but I understand that hesitation. Gosh My pain clinic pa I see was like oh it will feel better in a day. Dr who did injection was like it's going to help in about 3 days but wasn't optimistic that it's really gonna help. I figure a week I might have an idea maybe
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Post by Kenny1980 on Feb 21, 2024 12:56:45 GMT -6
AmyG thanks for checking in! I met with my endocrinologist on Monday and we decided to try the enzyme replacement therapy for my hypophosphatasia. The medication is stupid expensive (1-2 million a year). So I expect a battle with insurance to approve. I'm hopeful once I get going on it that my pain levels are reduced. I was told it would take up to a full week to see the SI joint injections take full effect. Hopefully that provides some relief for you. That price is so stupid expensive! Hope insurance plays nice but I understand that hesitation. Gosh My pain clinic pa I see was like oh it will feel better in a day. Dr who did injection was like it's going to help in about 3 days but wasn't optimistic that it's really gonna help. I figure a week I might have an idea maybe Thankfully there is a patient assistance program if my co-pay it high. I am expecting to feel like a million bucks- literally. The cost is so high because it is the only drug approved for the condition and there is no genetic on the market.
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AmyG
Ruby
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Post by AmyG on Feb 21, 2024 13:41:54 GMT -6
That price is so stupid expensive! Hope insurance plays nice but I understand that hesitation. Gosh My pain clinic pa I see was like oh it will feel better in a day. Dr who did injection was like it's going to help in about 3 days but wasn't optimistic that it's really gonna help. I figure a week I might have an idea maybe Thankfully there is a patient assistance program if my co-pay it high. I am expecting to feel like a million bucks- literally. The cost is so high because it is the only drug approved for the condition and there is no genetic on the market. It costs that much cause drug companies will charge whatever they can because they have people with this condition over a barrel. It's unethical imho
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Post by Kenny1980 on Feb 21, 2024 13:45:00 GMT -6
Thankfully there is a patient assistance program if my co-pay it high. I am expecting to feel like a million bucks- literally. The cost is so high because it is the only drug approved for the condition and there is no genetic on the market. It costs that much cause drug companies will charge whatever they can because they have people with this condition over a barrel. It's unethical imho Completely agree! There is no reason why they can't lower the cost. They know they can change what they want since there are no other options. The cost of medications is so messed up.
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gingy
Opal
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Post by gingy on Feb 21, 2024 14:08:50 GMT -6
I'm still here and kicking.
Two weeks ago I had a "flare or flu," which is always fun. I was convinced it was a flare, but then the sinus infection hit. It honestly could have been both, with the flare leading to shitty immune response.
This winter has brought the worst Reynaud's I've ever experienced, so I'm glad it's unseasonably warm right now. I'm done with cold. Although sun brings its own issues.
My pcp increased my Topamax at my follow-up in December. I've had one cluster since, and it lasted less than 24 hours. The Topamax has led to some dramatic weight loss, but as long as labs are ok, I assume I'll koko. I feel fine at this point. I see both my pcp and rheum the first week of March.
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AmyG
Ruby
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Post by AmyG on Feb 21, 2024 18:37:04 GMT -6
gingyI'm glad you're still kicking. I'm holding onto my knotted and frayed rope. Sorry about reynauds. My friend told me she was "allergic to cold" and described reynauds. she grew up in Minnesota and yikes. You could live here but even the "cold" in Phoenix sets her off I need a med that helps pain and gives weight loss. I know it's not a joke for you though.
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gingy
Opal
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Post by gingy on Feb 22, 2024 8:25:29 GMT -6
gingy I'm glad you're still kicking. I'm holding onto my knotted and frayed rope. Sorry about reynauds. My friend told me she was "allergic to cold" and described reynauds. she grew up in Minnesota and yikes. You could live here but even the "cold" in Phoenix sets her off I need a med that helps pain and gives weight loss. I know it's not a joke for you though. My feet are cold and purplish all year here, so dips into anything wintery are definitely obnoxious. Not gonna lie, I'm not mad at the weight loss. As long as I can still be healthy about it, I'll take the wins where I can.
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AmyG
Ruby
Posts: 15,372 Likes: 33,958
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Post by AmyG on Feb 22, 2024 10:31:22 GMT -6
gingy I'm glad you're still kicking. I'm holding onto my knotted and frayed rope. Sorry about reynauds. My friend told me she was "allergic to cold" and described reynauds. she grew up in Minnesota and yikes. You could live here but even the "cold" in Phoenix sets her off I need a med that helps pain and gives weight loss. I know it's not a joke for you though. My feet are cold and purplish all year here, so dips into anything wintery are definitely obnoxious. Not gonna lie, I'm not mad at the weight loss. As long as I can still be healthy about it, I'll take the wins where I can. Any meds you take has gotta be something in the plus column. This med just has an extra +1. Be sure to talk to dr about it they may wanna do some blood test or something to keep you healthy in the journey you are on. ❤️
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Post by kittyriot on Feb 22, 2024 13:05:52 GMT -6
I’ve had a bad go of things lately. I slipped something in my low back and ended up completely incapacitated for approx 4 days. H had to help me walk, go to the bathroom, shower. That was about 3 weeks ago. I’m still not back to my normal. I was just at physio though and she did some good work today helping me get untwisted.
Some days I really hate my hEDS because it’s just so random and debilitating when something slips out of place.
I’m going to a women’s retreat this weekend with some girlfriends, there’s yoga, massages, hot tubs by the waters edge, and I’m worried. Worried about sitting in the car, worried about yoga. But I’m trying to not get ahead of myself, it’s just hard when things have been so bad lately.
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AmyG
Ruby
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Post by AmyG on Feb 24, 2024 11:42:31 GMT -6
kittyriotThought I replied to your update but guess the pain meds were in the way for me thia week. I'm sorry you are facing uncertainty on your weekend womens treat. Just be brutally honest with them if you can't do something or dont think you can. like yoga teacher I need accommodations. I know you know this but most people really want to help you still enjoy this retreat. And they don't want you to find it a huge challenge. Be gentle with yourself and try nit to worry. But don't overdo it! ❤️
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