Addisons struggle

[Dangercockroach]

Hi, I am new here, and trying to find new information, and people I can talk to without judgement. I have a pretty unique situation. I am about to be 31, been disabled since about 2010, sick my whole life and spent pretty much all of 2018-2019 in the hospital dying with a 10% chance of survival. I have the worst case of Addison’s disease anyone has ever seen, mostly due to my dozens of other disorders, mostly auto immune, the weakness of my body from so much time dying, in medical emergencies, multiple organ failures, sepsis, shock and a lot of Adrenal crisis. I have probably coded (died) at least a dozen times.
My problem is I have extreme chronic pain. I get constant kidney stones, about a hundred a year, severe endometriosis which is worsened by a large amount of scar tissue from having tubes tied and then septic shock 4 days later with four abscesses larger than dessert plates that took 6 months to recover from. Well as everyone knows it’s EXTREMELY difficult for patients to actually get pain meds they need because of the opioid epidemic. I have been on fentanyl 50mcg patches and 2-3 norco 10/325 a day for over a year. I recently went into adrenal crisis because the pain got so bad it’s just eating through my steroids so quickly I cannot keep up, and my doctor knows but literally shrugs and facepalm as no doctors know what to do with me. I have a partially collapsed colon and lung, an obstructing kidney stone along with more in kidney, severe adrenal crisis, no voice (laryngitis, MCAD flare and apparently my thyroid is now so big it is strangling me from the inside), ovarian cysts and a bleed in my stomach, also started coughing up blood and get fevers of unknown origin constantly like today it was 102.2, and no I don’t have covid, I am bedridden and isolated for about four years, and too weak for any procedures, surgeries, vaccines or anything. Allergic to contrast, EPI stops my heart which yes is the opposite effect it should have, and I have a pacemaker. I don’t know what to do. I did well when they added diladid every four hours but when they stopped that and sent me home since they couldn’t do anything I started to get worse and worse.
my best friend is a diabetic who broke her ankle in three places, it broke off the leg literally and has a rod and screws holding it on, on top of that she has endometriosis as well and just has Medicaid, no doctors will prescribe anything, and she keeps going into DKA.

basically we both keep getting fatally ill from this “opioid epidemic” which seems more like a war on the chronically ill than anything, I don’t even know if this is the kind of post that’s allowed here but I am desperate and out of ideas. Any info would be great. And we have tried Kratom and cannabis, neither helped and actually both made my muscles seize up and made me worse now, I am a grower and used to use for other disorders so i have tried different strains and all. I don’t know how much more i can take of this. Even my doctors don’t know how I can withstand this low quality of life and severe pain, very ill and poor prognosis, they say just try to keep fighting and each month seem surprised I haven’t offed myself or died from crisis.
Thank you.

 

[losbirds]

Hey there,
I am so so sorry for your struggle.. can you fill me in more about what Addison’s disease is? I did a quick google search, but figured I would ask the pro. What is your diet like? How much prednisone are you currently on? I wanted to get a little more info before offering up any advice.. please list all medications you are on. Thanks..
-LB

also, in what state do you live?

 

[blockbusterparty]

Hi dangercockroach,

I was just about to do my own intro about my own health issues, but decided to read your post first. Whoa. Boy do I feel for you!!

I wish I knew what to say. Can I ask....did you do drugs before all this started? Not trying to blame or shame you at all; mostly I'm wondering because my own situation, which is different from yours, clearly, I keep wondering if I brought it on myself from my drug use. I think I did, even though I used less than many, many people.

That's enough for now...I will leave my own problems for another post. I will look for your posts around here, though, to try to follow.

Like losbirds, also wondering where you live?

 

[Dangercockroach]

Hey there,
I am so so sorry for your struggle.. can you fill me in more about what Addison’s disease is? I did a quick google search, but figured I would ask the pro. What is your diet like? How much prednisone are you currently on? I wanted to get a little more info before offering up any advice.. please list all medications you are on. Thanks..
-LB

also, in what state do you live?

Sorry it took me a little while, I am trying to reply in reasonable time frame but it’s hard when you feel horrible. I did however just make a list of my medications, I’m pretty sure I got them all down, but wowza that took a bit of time, my mom has filed copies somewhere but I don’t think those are even up to date. I live in Michigan. Addison’s disease is autoimmune adrenal insufficiency basically my adrenal glands are dead. I don’t make cortisol which is the stress hormone so basically any stress I am
Under I have to take a bunch of steroids in order to balance, and not go into an adrenal crisis which can be fatal, especially for me as I have had so many medical disorders and emergencies and such that my body is very weak now and adrenal crisis quickly turns into multiple organ failure and it is the scariest thing I have ever experienced. The worst pain of my life, bot being able to control any of my body while trying desperately to hang onto life. I have PTSD from that experience. I was found in my room collapsed on my floor at 5 am because I was dying and couldn’t really move or talk and was rushed to the ER 5 minutes away. All that had caused it was I had attempted to put away/organize my laundry in my closet. That’s all it took, which shows how very weak and frail my body has become after going through septic shock from Dec 18, 2018 surgery to tie my tubes, have a novasure, and they were going to remove endometrial tissue but said I was about to bleed out if they did and with mast cell activation disorder I could have an allergic reaction to a blood transfusion.

Medications



ATORVASTATIN 20 MG TABLET



ONDANSETRON ODT 8 MG TABLET 3 times daily as needed



BUTALB-ACETAMIN-CAFF 50-325-40 as needed for migraines



HYDROCORTISONE 10 MG TABLET 2 at 8 am 1 at 1 pm 1 at 6pm 1 at midnight double when sick



SOLU-CORTEF 100 MG ACT-O-VIAL as needed for adrenal crisis



PROPRANOLOL 20 MG TABLET 3 times daily for tachycardia, a fib, and sick sinus syndrome



NORTRIPTYLINE HCL 10 MG CAP



LEVOXYL 150 MCG TABLET



TAMSULOSIN HCL 0.4 MG CAPSULE



OXYBUTYNIN CL ER 10 MG TABLET TABLET EXTENDED RELEASE 24HR



VITAMIN D2 1.25MG(50,000 UNIT) Tue & Sat



XARELTO 20 MG TABLET



MONTELUKAST SOD 10 MG TABLET



NURTEC ODT 75 MG TABLET every 48 hours



ALBUTEROL HFA (PROAIR) INHALER



LORAZEPAM 1 MG TABLET 4 times daily



FLUDROCORTISONE 0.1 MG TABLET double in hot weather



RIZATRIPTAN 10 MG TABLET



HYDROCODONE-ACETAMIN 10-325 2-3 daily for severe pain



FENTANYL 50 MCG/HR PATCH every 72 hours



BUPROPION HCL XL 150 MG TABLET



ESCITALOPRAM 20 MG TABLET

 

[Dangercockroach]

Hey there,
I am so so sorry for your struggle.. can you fill me in more about what Addison’s disease is? I did a quick google search, but figured I would ask the pro. What is your diet like? How much prednisone are you currently on? I wanted to get a little more info before offering up any advice.. please list all medications you are on. Thanks..
-LB

also, in what state do you live?

Oh and my diet is pretty much down to homemade vegan/vegetarian soups my mom has to make for me due to my allergies, intolerances and my colon collapsing/thyroid nodule and goiter putting so much pressure on my throat so swallowing can be an issue pretty often. But I do have a vice of peach flavored hint water. It’s expensive so I stocked up while it was on sale but we all need something right? It has just the light fruit flavor and nothing bad in it. Pineapple and mango are pretty good too but with all my allergies it’s so hard to find things I can actually have that taste good and aren’t pure sugar or artificial.

 

[negrogesic]

Hi, I am new here, and trying to find new information, and people I can talk to without judgement. I have a pretty unique situation. I am about to be 31, been disabled since about 2010, sick my whole life and spent pretty much all of 2018-2019 in the hospital dying with a 10% chance of survival. I have the worst case of Addison’s disease anyone has ever seen, mostly due to my dozens of other disorders, mostly auto immune, the weakness of my body from so much time dying, in medical emergencies, multiple organ failures, sepsis, shock and a lot of Adrenal crisis. I have probably coded (died) at least a dozen times.
My problem is I have extreme chronic pain. I get constant kidney stones, about a hundred a year, severe endometriosis which is worsened by a large amount of scar tissue from having tubes tied and then septic shock 4 days later with four abscesses larger than dessert plates that took 6 months to recover from. Well as everyone knows it’s EXTREMELY difficult for patients to actually get pain meds they need because of the opioid epidemic. I have been on fentanyl 50mcg patches and 2-3 norco 10/325 a day for over a year. I recently went into adrenal crisis because the pain got so bad it’s just eating through my steroids so quickly I cannot keep up, and my doctor knows but literally shrugs and facepalm as no doctors know what to do with me. I have a partially collapsed colon and lung, an obstructing kidney stone along with more in kidney, severe adrenal crisis, no voice (laryngitis, MCAD flare and apparently my thyroid is now so big it is strangling me from the inside), ovarian cysts and a bleed in my stomach, also started coughing up blood and get fevers of unknown origin constantly like today it was 102.2, and no I don’t have covid, I am bedridden and isolated for about four years, and too weak for any procedures, surgeries, vaccines or anything. Allergic to contrast, EPI stops my heart which yes is the opposite effect it should have, and I have a pacemaker. I don’t know what to do. I did well when they added diladid every four hours but when they stopped that and sent me home since they couldn’t do anything I started to get worse and worse.
my best friend is a diabetic who broke her ankle in three places, it broke off the leg literally and has a rod and screws holding it on, on top of that she has endometriosis as well and just has Medicaid, no doctors will prescribe anything, and she keeps going into DKA.

basically we both keep getting fatally ill from this “opioid epidemic” which seems more like a war on the chronically ill than anything, I don’t even know if this is the kind of post that’s allowed here but I am desperate and out of ideas. Any info would be great. And we have tried Kratom and cannabis, neither helped and actually both made my muscles seize up and made me worse now, I am a grower and used to use for other disorders so i have tried different strains and all. I don’t know how much more i can take of this. Even my doctors don’t know how I can withstand this low quality of life and severe pain, very ill and poor prognosis, they say just try to keep fighting and each month seem surprised I haven’t offed myself or died from crisis.
Thank you.

You might not like the name due to the stigma, but you might consider methadone maintenance. Depending where you go and how much resources you have ($ rules in the US) you can get a dose of methadone that is equivalent to far more than what is normally prescribed in terms of other narcotics.

There are some pros and cons to methadone but a big pro is getting a dose that is much higher than what most pain docs will prescribe.

 

[Dangercockroach]

Hi dangercockroach,

I was just about to do my own intro about my own health issues, but decided to read your post first. Whoa. Boy do I feel for you!!

I wish I knew what to say. Can I ask....did you do drugs before all this started? Not trying to blame or shame you at all; mostly I'm wondering because my own situation, which is different from yours, clearly, I keep wondering if I brought it on myself from my drug use. I think I did, even though I used less than many, many people.

That's enough for now...I will leave my own problems for another post. I will look for your posts around here, though, to try to follow.

Like losbirds, also wondering where you live?

That isn’t a bad question. No I didn’t do drugs before all this started happening however for a brief time when I started having blacked out memories bombard me and my PTSD came rushing in I did lean kind of heavily on Xanax to try to drown it own as well as was young and stupid and probably drank a bit more than I should have. But that was already five years into being sick, and actually I was my healthiest at that time which is super odd but as most people who know my health issues say, nothing in my body works or Makes sense and often is actually the opposite of what is supposed to happen. Like how epinephrine stops my heart. They never had seen such a thing before and yet.... it happened before their very eyes in the hospital. But what kind of health issues are you having/what drugs had you done? I actually have a great friend in the medical field who has been of great help, she also went through cancer twice in her twenties and was a heroin addict when we were in high school so she is extremely understanding and empathetic in so many ways, she’s in training to be what I call a death angel. I know their are a lot of different titles and not sure what the official title is but it’s like a death midwife to help people dying and on hospice ease their way and be there for them, just realized I got derailed there, which I do very often but I just found out about this and it fascinated me. I have always been fascinated by medical stuff since I was born sick and not breathing and then had a horrible infection three days later and had a spinal tap and everything, so I studied epidemiology and genetics in school before I was forced to medically retire from schooling and employment. But I’m still always trying to future understand everything. Curious as always.

 

[MazDan]

Hiya Danger,

The best thing you can ever do for yourself, is to do something for someone else.

ohhh and.........keep smiling.

 

[losbirds]

Danger,
your body has been immuno compromised for essentially forever. I am heartbroken for your pain and struggle.
I have always had an issue with the FDA (and CDC for that matter, but that’s another story).. looking at your list of medications, it certainly looks like you can eliminate a lot of them. I think your goal should be to get off as many pharma drugs as possible, but slowly.
if you are willing to try anything, I highly, highly, highly recommend you see some sort of wellness guru, holistic doc, whatever you want to label them who specializes in Eastern medicine. Western medicine has failed you and poisoned your body. I never believe it’s too late for anyone to turn their health around and I certainly believe you can.
Can you fill me more in on what kind of bowel surgery you had? I have Crohn’s disease (in remission now) and I went down a similar path as you (of course not as severe) and I finally got the right guidance to change my life. It was hard.. but I was desperate. The key to your health lies in your gut. You are going to have to heal yourself from the inside out and it’s not too late. You can do it.. I have recommendations for people to see in California, but I’m certain you can find someone in Michigan. I would even research holistic fertility docs (I know you are not looking to have a baby any time some) as fertility docs understand hormones the best. I’ve been on an adrenal reset diet for the last two years because of the doc my wife found.
Anyways.. you have to believe in yourself like I believe in you. That’s the first step. You can do this..

 

[losbirds]

And of course you should maintain the pain medications.. methadone was a good tip as the dose you could get might be more beneficial.
But I do think you should talk to someone with more experience on how to treat your issues through diet/supplements instead of just more pharma aka poison.

 

[Dangercockroach]

Tha

Hiya Danger,

The best thing you can ever do for yourself, is to do something for someone else.

ohhh and.........keep smiling.

That’s exactly how I try to live my life. Do as much good as I can for as many as I can, I’m actually referred to as my friends guardian angel, we have many theories we have come up with over the years about why I have come back from the dead so many times, why I am so sick and in such pain, try to make sense of it all, but I always try to help and put smiles on faces when I can but I’m not gonna lie I came here partially because it’s getting really hard to stay strong and put on a happy face all the time when struggling.

 

[Dangercockroach]

Danger,
your body has been immuno compromised for essentially forever. I am heartbroken for your pain and struggle.
I have always had an issue with the FDA (and CDC for that matter, but that’s another story).. looking at your list of medications, it certainly looks like you can eliminate a lot of them. I think your goal should be to get off as many pharma drugs as possible, but slowly.
if you are willing to try anything, I highly, highly, highly recommend you see some sort of wellness guru, holistic doc, whatever you want to label them who specializes in Eastern medicine. Western medicine has failed you and poisoned your body. I never believe it’s too late for anyone to turn their health around and I certainly believe you can.
Can you fill me more in on what kind of bowel surgery you had? I have Crohn’s disease (in remission now) and I went down a similar path as you (of course not as severe) and I finally got the right guidance to change my life. It was hard.. but I was desperate. The key to your health lies in your gut. You are going to have to heal yourself from the inside out and it’s not too late. You can do it.. I have recommendations for people to see in California, but I’m certain you can find someone in Michigan. I would even research holistic fertility docs (I know you are not looking to have a baby any time some) as fertility docs understand hormones the best. I’ve been on an adrenal reset diet for the last two years because of the doc my wife found.
Anyways.. you have to believe in yourself like I believe in you. That’s the first step. You can do this..

Actually my “sister” not through blood but through the heart studied eastern medicine, went on a retreat, detoxed, then taught others and was helping me to do more holistic approaches. Actually that list is dwindled down.... and I eat a plant based diet, try to avoid as much toxins as possible, have been trying to do what I can little by little but of course there are always things to derail you and try to set you off course. But I am pretty sure besides the poisons of Big Pharma, I have eliminated most other things. So we are on a very similar wavelength here on going forward. There are a lot of issues with how my body absorbs things, allergies, and of course the damage already done so far have to be super super careful and take things very slowly but I sure have been trying.

 

[losbirds]

Please check out the Cymbiotika website and their supplements. This is not an add.. I take their stuff and it’s changed my life. 100 percent (or close to it) bio available goodness.

 

[Dangercockroach]

Danger,
your body has been immuno compromised for essentially forever. I am heartbroken for your pain and struggle.
I have always had an issue with the FDA (and CDC for that matter, but that’s another story).. looking at your list of medications, it certainly looks like you can eliminate a lot of them. I think your goal should be to get off as many pharma drugs as possible, but slowly.
if you are willing to try anything, I highly, highly, highly recommend you see some sort of wellness guru, holistic doc, whatever you want to label them who specializes in Eastern medicine. Western medicine has failed you and poisoned your body. I never believe it’s too late for anyone to turn their health around and I certainly believe you can.
Can you fill me more in on what kind of bowel surgery you had? I have Crohn’s disease (in remission now) and I went down a similar path as you (of course not as severe) and I finally got the right guidance to change my life. It was hard.. but I was desperate. The key to your health lies in your gut. You are going to have to heal yourself from the inside out and it’s not too late. You can do it.. I have recommendations for people to see in California, but I’m certain you can find someone in Michigan. I would even research holistic fertility docs (I know you are not looking to have a baby any time some) as fertility docs understand hormones the best. I’ve been on an adrenal reset diet for the last two years because of the doc my wife found.
Anyways.. you have to believe in yourself like I believe in you. That’s the first step. You can do this..

I didn’t have surgery for my bowels. I had a bunch of pelvic surgery done and then a ton of giant abscesses formed in a few days and I was hallucinating in septic shock and they almost had to do these complex bowel surgeries but first of all I had almost no chance of surviving surgery and second luckily they were able to drain the abscesses and pump me full of enough antibiotics to not need to attempt surgery. But I do keep getting collapses and bleeds in my GI system and they cannot even do a scope because I’m so immune compromised and have bleeding issues along with mast cell activation disorder that a little nick would almost immediately become infected, cause a terrible bleed needing surgery I couldn’t survive and we are not sure I could even get a transfusion due to my reactions to everything. It’s scary how little can be done at this point. But I have survived a lot and with how many times my heart has stopped and I have coded, it’s insane I am here to tell the story.

 

[losbirds]

I didn’t have surgery for my bowels. I had a bunch of pelvic surgery done and then a ton of giant abscesses formed in a few days and I was hallucinating in septic shock and they almost had to do these complex bowel surgeries but first of all I had almost no chance of surviving surgery and second luckily they were able to drain the abscesses and pump me full of enough antibiotics to not need to attempt surgery. But I do keep getting collapses and bleeds in my GI system and they cannot even do a scope because I’m so immune compromised and have bleeding issues along with mast cell activation disorder that a little nick would almost immediately become infected, cause a terrible bleed needing surgery I couldn’t survive and we are not sure I could even get a transfusion due to my reactions to everything. It’s scary how little can be done at this point. But I have survived a lot and with how many times my heart has stopped and I have coded, it’s insane I am here to tell the story.

That means you are strong and ready for the battle to come. You will get better. Keep envisioning yourself HEALING from within.. it’s a powerful tool. I know you must be over whelmed with feelings of misery and this never ending loop. But try your damndest to keep POSITIVE. Everything you told me thus far tells me your body is STRONG and not willing to give up. The answers are out there. You will find them.

 

[MazDan]

Tha

That’s exactly how I try to live my life. Do as much good as I can for as many as I can, I’m actually referred to as my friends guardian angel, we have many theories we have come up with over the years about why I have come back from the dead so many times, why I am so sick and in such pain, try to make sense of it all, but I always try to help and put smiles on faces when I can but I’m not gonna lie I came here partially because it’s getting really hard to stay strong and put on a happy face all the time when struggling.

I have found that by focussing on helping others, it has taken my focus off myself. It was the greatest thing I ever did for myself.

 

[Dangercockroach]

AHHHH kidney stone just went into urethra, I could feel it and I have already been having horrible adrenal/kidney and pelvic pain all day now I cannot move, this is when the” opioid crisis”war on chronic pain patients is the worst!!!!