..and I Pushed Myself Too Hard. [Health Update]
While yesterday was beautiful and lovely it is not something I can repeat in the near future. I pushed myself too hard.
Which is sad because I planned to do it often once I got my hydration pack. Apparently, being that active can cause super flares and it wasn't even that active. We walked around at a casual pace for about 90 minutes at the gardens and then went out to eat, went to a book store briefly, and picked up a few groceries.
For that day, I spent 10 hours in agony peeing into a container by my bed every 2 minutes. Literally. Fire pee. Glass shards. Crying. Unable to sleep. It was hellish.
Today, I would be lying if I said I wasn't feeling sad and knocked down. My friend with IC told me to only walk a few blocks a day and see how I react before pushing it more but my neighborhood is a total ghetto and I can't afford to cab myself to places and can't handle bus trips in my condition. So basically, I need to remain mostly stranded in this room with these same 4 walls for the foreseeable future. The room I have been in for a year hundreds of miles from my friends. The room that drove me to such a level of insanity that I nearly succeeded in killing myself just a few months ago. Oh, or I can walk outside for a few blocks while creeps guys yell things at me and drug dealer looking people ride around on bikes, and people party and scream on their steps. Fun.
Don't worry I am not at risk of killing myself and am still sticking to my sobriety and IC diet. I still plan to fight this but today I have a heavy heart and today is filled with tears. So, take this all those people that tell me I am just not trying hard enough and that I am on the only person standing in my way of going outside. Here's what happens when I power through.
Please refrain from trying to give me medical advice on my very complex auto immune disease. I have a doctor. I have appointments set up for further diagnosis and treatment. It isn't a UTI. It doesn't have a simple cure and nobody but the people looking inside my bladder and pelvic floor with a camera who have the ability to act on their findings can help me. I know people are just trying to help but because IC sounds a lot like a UTI I just get exhausted having to explain my situation to people offering unsolicited advice. I just wanted to vent. The solution to my problem is already in the works. I just have to be really, really patient.
My scary doctor's appointment full of tests is in 3 weeks.
I am pretty terrified of this trip. I have to cab there and back alone. I have to arrive with a full bladder which feels impossible as I can't have a full bladder without being in agonizing pain and doubled over and if I hold it too long I would just pee myself so I don't know how to meet this requirement when I had to wait over an hour before being seen when arriving on time last visit.
Also, They will be putting something in my rectum which is covered in hemorrhoids and filling my bladder which is covered in tiny sores, scar tissue, and inflammation. I will have to pee in front of people. It's just...scary and I wish I was near all my friends so I could have some support.
That being said, I am so grateful to be having the appointment and while I don't look forward to the tests themselves I look forward to the answers and being able to start treatment.
This is all so hard. I still have to somehow try to pay my rent and eat with all this and no ability to work and no SSi or disability. I plan to fight for SSi once I get diagnosed but it'd take a year or more to get and involve a lot more appointments, tests, and stress. In the immediate, I am scared. I am suffocating in bills and debt. I am unable to feed myself. This is so hard and scary and I don't know how I am supposed to do it with all the physical and mental diseases I am battling.
I won't give up though. I won't and I won't drink to cope like I did in the past. I might cry a lot but I won't give up and I will walk as far as I can and I will keep meditating and I will fight.
I offer a distraction. Seeing you have reasonable medical care and are showing positive emotional signs, it is my only gift for you.
Caring about someone you have never met is a new social concept. In the past, I would never had the potential to hear your story or relate to your pain. Is it possible for me to share with you at a spiritual level? Can I by some invisible method support your efforts? There is no logical answer... that I understand, but consider my puny upvote as a messenger of hope. I purposely chose a memorable percentage so that you can consider it a token to clutch when you need a bit of friendly support. Think 88.
I hope you have been given a brief distraction.
I have no idea what it like to wake up in your shoes and no idea if you feel supported. If you would like I could pray with you and for you. Just say the word
Just so that you're aware of this, technically, it takes 6 months to get SSI disability. You do have to have a medical paper trail that the social security people can look at to decide if you qualify for disability. It usually ends up taking a bit longer than 6 months to get it, but if they give it to you the first time you apply, you'll get back pay for the extra months past 6 months that it took to get approved. It took 8 months for Social Security to approve my application, so I got 2 months back pay as well as the regular amount on my first check from SSI.
Once you get your diagnosis, you should apply on line for disability. If you give then access to your medical records, it takes less time and makes it easy for them to make a decision. When you apply, make sure you also put your depression issues on the application, it can help with the approval.
I have clinical depression and anxiety as well as a damaged back, and I applied based on all of that.
I will DEFINITELY put the depression and even though I havent been diagnosed I was baker acted in FL for cutting and in the ER for a week here for a suicide attempt. So, that is pretty evidently an issue. I need to get papers for all that and have no idea where to start though.
I do feel confident that eventually I will qualify though. I just have no idea how to get by in the mean time.
and yes, my plan was to get diagnosed and then apply. I also have a friend who used a lawyer. He took like 255 of her back pay but got her SSi and helped her with the process. I was considering calling him.
The hospital should be able to provide you with a copy of the medical records for your ER stay. You might have to go there in person to get them, which I realize would be a problem for you.
A bigger problem than you realize. I can try on my roommates day off if he agrees but getting there myself is pretty impossible right now. :(
Yeah I don't know anybody you has actually gotten SSi in six months personally so I doubt I will and I know about the back pay but that doesn't really matter right now as I am totally incapable of paying bills and eating. XD
I do have severe depression, anxiety, and PTSD but never had money or doctors in FL so I still have to see doctors to get diagnosed for that and I can only handle the appointments for my bladder at the moment. I can barely leave my home and pee like 60 times a day and can hardly afford to miss days of "working" on mturk just to get to all the appts I have for my bladder. So, it'll probably be at least a year for me and I don't know how I will make it.
Yes, the "right now" is the hardest part. Perhaps you could get some food assistance and help with the primary bills like rent. There should be state programs for that kind of help, but I don't know what's involved with getting that kind of assistance where you're living.
I can't even begin to imagine how incredibly tough your battle is, but I applaud you for trying to remain positive. I've struggled with health issues too, and I lost almost a year of my life bouncing between doctors and lying in bed until I was finally properly diagnosed and had my operation. I won't bore you with the details, but I can definitely relate to your struggle. I admire your positivity and willpower. Keep on fighting the good fight :)
It's been two years now for me and there is likely another year to go or more before relief as I just started the process of getting diagnosed and it's generally a long process from that to relief. I am going mad at this point. I am really glad that you had your operation and are doing better now and hopefully in a year or so this will just be hellish phase of my life that I can put behind me. :'( I mean I will always have the IC and have to adapt my lifestyle but I would be thrilled to have even a 60% improvement.
Man... You are as tough as nails to have endured this for so long. Sending good vibes your way and hoping you will get the answers and the relief you deserve soon. ❤️
Hang in there, I've enjoyed reading your posts. Stay strong!
This comment has received a 5.45 % upvote from @lovejuice thanks to: @theabsolute. They have officially sprayed their dank amps all over your post rewards. GOOD TIMES! Vote for Aggroed!
Saying sorry to hear that, doesn't seem to do much justice, so I will say a heartfelt reply.
It is sad to hear you are having to go through so much, especially the pain. I'm glad you are still here with us, and that you plan to keep it that way.
It is ok to cry, especially when things are so tough. I/we are here for you, whether you need to vent, seek comfort, just chat. I will pray that you get some much needed answers, and they find a way to get you back to health.
Am glad you will keep walking and meditating too. As for the needing to fill bladder, on the bright side, you can piss all over them if they make you mad :-)
I pushed myself way too hard yesterday considering I'm only just getting back into the gym lol why