I stay in my home for months at a time.

@tom1970 Dear Tom, I have no medical training and know of no way to help you, but I read your post and just want to express my sympathy with all you have had to go through and send you support for being in such a s**t situation. I have Bipolar Disoder and ALS, but fortunately have an excellent support team. I don't want this to sound as if I am insensitive or some kind of nutter, but it is important for me to focus on one thing a day which makes me appreciate the world outside illness. It is early winter here in Australia, the days are crisp and chilly and the trees have lost most of their leaves. I am writing this at 9.30am, and looking forward to a hot cup of coffee before I start to deal with my issues. I know you are in a terrible situation, but try not to let illnesses define your life. "You" are still there inside everything, try to value and be kind to "You". Sending you warm wshes, @ellu

While everyone has given you good advice I may have something to add. If you live anywhere remotely near Louisville, I would suggest contacting Norton Healthcare. You’d be surprised how many people use their facilities who are out-of-state, including Indiana . They are a tremendous resource. I moved from MD to KY solely because of their reputation as a comprehensive healthcare provider. Was never sorry. Just an idea. Best wishes.

You said that you talked to your family doctor about the pool situation. Have you gone to a large teaching hospital where they can look at the whole picture? I am so sorry you are going through all this.

Hi Tom,
Sorry you are going through so many issues. It is difficult to deal with chronic health problems. While you mentioned a number of health conditions - the one that spurred me to write was the Adrenal Crisis.
Adrenal crisis/insufficiency can be extremely serious. Were you put on Prednisone (steroids) for the adrenal crisis? The opposite of Adrenal Crisis is Cushing's syndrome. While that can be due to a pituitary tumor, it can also be iatrogenic (caused by steroids). I am a steroid dependent asthmatic who fluctuates between iatrogenic Cushing's and Adrenal insufficiency each time I go down on prednisone. It is a constant balancing act with physical symptoms.
While reading, I did see sleep apnea mentioned. Do you have any respiratory problems (asthma or COPD), which are contributing to the apnea? If you were put on hydrocortisone or prednisone, that would also account for the weight gain, as well as lymphedema. If you have thin arms/legs, with severe swelling/fluid in the abdomen, paracentesis may be a good suggestion which you had. Have you developed diabetes type 2 with all of this going on - which could also increase your weight? It would also be another cause of the weight gain - as insulin injections increase weight as well. Have you been checked for lyme disease - which could also lead to fibromyalgia? Take a good look at your medications - are they interacting with each other - causing more symptoms. Vitamin supplements may be considered - but check your levels before you take anything.
I hope some of this is helpful. Good luck and feel better.

PS ANY doctor who dared to laugh in my face was fired immediately. That is totally unacceptable Tom, MOVE ON.

@parrot53 @tom1970 I agree- don’t be ashamed at all, seriously. I’m the same way and I’ll reply a bit later as I can relate to a lot of your situation… the shame part I’m actually trying to find some low cost or free mental health therapy because chronic illness changes our lives completely and the isolation and struggle that often others don’t understand can take a mental toll on anyone. Before my medical issues onset at age 28, I had a great social life and had many hobbies and things I loved to get out and do/partake in, I had a successful career and was making pretty decent money with health insurance benefits etc, I was obsessed with long distance running (8+ miles a day everyday), yoga, I was very in shape and thin (and proud of it bc I worked really hard in athletics and athletics was a huge part of my life), I was also a high-level, competitive rider (in equestrian, I did jumpers), natural energy, and the list goes on. Before my issues started randomly, I was in perfect health and had no idea what was about to come. I’ve lost almost everything I loved and had in my life before, and part of that for me was also be being in a very different financial situation, had to stop working for the most part, shame around my reality and ALSO gained a significant amount of weight (as a former athlete and long distance runner, I was always thin and had a lot of confidence around that, so gaining weight hit me hard)… depending on your situation, I highly suggest talking to a free healthcare insurance broker who can find you a Marketplace plan and get the plan even more discounted based on various factors in your life. I love and have great coverage at a VERY low monthly payment through health insurance marketplace. Sadly, for various reasons, I may be about to lose my marketplace insurance and have to apply for Medicaid, if I qualify, so I understand the stress of affording medical issues and treatments, but I encourage you try give yourself some grace and not judge yourself as much 🙂 here are some things I suggest, and bear in mind, some of these suggestions are on the more “holistic” side, but that should be in combo to regular modern medical treatment 🙂
-apply for Medicaid or a marketplace insurance plan through a broker (many are free)
-if qualified, apply for financial assistance from the gov whether through SSDI or disability payments, etc
-many hospitals and clinics have surprisingly good resources for free or discounted medical care AND Mayo Clinic is one of them.. I highly recommend calling up and talking to someone at Mayo. Under my marketplace plan, they actually didn’t work in network with Mayo, but I live in Jacksonville basically right next to the campus so I’ve had to be taken to their ER many times, and financial assistance from Mayo covered ALL of my expenses during my stay!
-find medical treatment studies relevant to your issues that speak to you and apply to be a part of the study
For pain relief:
-radio frequency ablations has helped in some capacity, but my pain is still very high and limiting
Holistic Therapy Suggestions:
-Red light therapy with NIR has been a game changer for my adrenal and autoimmune issues as well as balancing my cortisol and helping my adrenals a bit. You can get panels, mats to lay on, etc. I’m literally laying on mine while writing this lol. You’re welcome to contact me for more info and places you can find them fairly cheap and still legit. I also have quite a few red light products I don’t use, so perhaps I can ship you a product or help find you a great product at a low cost. Red light is seriously my favorite thing ever now
-at home devices like a portable TENS unit. I find them relaxing in general, but also useful for pain relief. Again, happy to suggest some good and affordable ones for you! I’m also hooked up to mine while doing red light and typing this.
-heating pad using infrared heat vs traditional heating pads
-PEMF mat- you can Google this and how it works- these pads are on the more pricey side, but work very well with regular use
-breathwork, guided meditations, and yoga or stretching. I’d suggest going on YouTube and searching for videos or guided meditations, specific to regulating cortisol and adrenal fatigue, etc. Also somatic release techniques
-Massages on a regular basis are so so helpful, although expensive so here are some potential ways to find them for lower cost: -Google and see if there are any massage schools near you. They often offer inexpensive massages given my students who are competing their clinical hours needed to become a licensed therapist, and many students are actually really great. Groupon also has discounts on massages.
-Something called Frequency Specific MicroCurrent is not as widely known among the general public, but due to my former professional athletic career where you often have access to more “elite” and specialized medical equipment and treatments, I learned about this modality as it can help with a huge range of both psychological/ortho and pain to actual general body/organ issues along with faster sports recovery. A practitioner will apply electrodes or wet towels to certain areas of your body and select a custom set of “protocols” to cycle through your body during your treatment. You can Google FSM practitioners in your area. If you explain your complex health issues and how much it’s affecting your life, they may give a discount. I myself am actually a FSM practitioner, so I can definitely help you find one in your area. I’m happy to contact whoever is close to you and give them a call myself explaining your situation and seeing if I can help you get a large discount. All FSM professionals have this strange connection haha and also it’s a kind of small world of us, so it wouldn’t be weird. Your protocols can treat everything from pain issues, cortisol and other hormone regulation issues, there are tons of protocols for adrenal-related diseases and issues, and others relevant to other things you’re going through. I love this modality because you can target such a wide range of medical problems in one session (a series of sessions is recommended)… i use my FSM unit on myself almost everyday and it’s really helpful.
-also expensive but I think it would be a gamechanger for you are NAD drips, shots, or supplements… also look into anything that is good for mitochondria health.
-Take a METHYLATED multi/B vitamin complex. Also a huge change seen from this. I can also share the product I use and I may be able to get it discounted. Other supplements that come to mind would be C0Q10, fulvic and/or humic acid with trace minerals, tumeric, and I’ll think of more later

Dear Tom,
I only wish I had a "magic wand" to wave to help you; unfortunately I do not. That being said, I STRONGLY agree with contacting the Mayo Clinic for help, getting to a Teaching Hospital, and I would add contacting The Office of The Aging and an Economic Opportunity Foundation in your county. Should all of these fail, contact a national TV station like ABC, NBC or CBS for help (trust me you will be surprised how quickly your local government agencies respond !) I most certainly can relate; I am a 77 year old female, with merely a high school diploma who fought her way up corporate ladders only to be one week away from being appointed VP of a large stevedore company (trust me, this was not a woman's business); and while porting a new ship had a massive stroke. The original diagnosis I was given was a genetic blood disorder called Leiden Factor V. I was 57 years old and my healthy active body only proceeded to go downhill from there. Both of my "metal" hips are now worn, the stents in my heart are probably worn, arthritis has set in, my L4 has been herniated for years, and RA is crippling my body now. I too, did a heck of a lot of therapy to gain as much mobility back, and YES my choice of therapy now at my age was "water therapy", unfortunately like yourself, our nearby pool was lost in a flood a few years ago and there are no others nearby. And...I loved it ! I too struggle with my weight, I am 5'4" and now weigh 170lbs. I used to be 5'7" and weigh 140 lbs! The loss of height is due to bone shrinkage; but don't dare ask me where 30lbs came from. I am so careful with my diet. Two weeks ago my doctor and I decided to add a new med to my regime to help with the pain; it is called Gabapentin, yes it helps, however the water retention just may cause me to stop using it. Bottom line, my friend, I too can most certainly relate to isolation, both physical, mental and emotional pain. I am so sorry to hear that you are in this place. Tom, I ask you to fight for your life. NO, it will never be the same. HOWEVER, it is my belief (on a good day) that if one does nothing, and gives up then we will just sink into a deep dark hole. You CAN do this. You have already started. you have reached out for help merely by contacting this site. All of that being said, I will add you to my prayers.

Hi Tom,

As others, I’m sorry that you are navigating medical challenges without many answers that help your situation. It’s so hard when our bodies change beyond our control. As I was reading your situation, one thing that came to mind was a GLP-1 medication to help with weight loss specifically Zepbound. In my research, I’ve heard other people say it helps and/or cures many other health conditions. I know money is tight but I believe there are coupons from the manufacturer (Lilly) which allows people to get the medication for as low as $25/month. Just a thought. Also, the doctors that find your suggestions laughable…that’s unacceptable. I would not waste time with them. The Mayo Clinic I have found to be amazing. They offer video visits as well. I am going to personally pray for you as well as add you to our church prayer list. I wish you and your wife all the best in this journey. Keep the faith!!!

@parrot53 @tom1970 I agree- don’t be ashamed at all, seriously. I’m the same way and I’ll reply a bit later as I can relate to a lot of your situation… the shame part I’m actually trying to find some low cost or free mental health therapy because chronic illness changes our lives completely and the isolation and struggle that often others don’t understand can take a mental toll on anyone. Before my medical issues onset at age 28, I had a great social life and had many hobbies and things I loved to get out and do/partake in, I had a successful career and was making pretty decent money with health insurance benefits etc, I was obsessed with long distance running (8+ miles a day everyday), yoga, I was very in shape and thin (and proud of it bc I worked really hard in athletics and athletics was a huge part of my life), I was also a high-level, competitive rider (in equestrian, I did jumpers), natural energy, and the list goes on. Before my issues started randomly, I was in perfect health and had no idea what was about to come. I’ve lost almost everything I loved and had in my life before, and part of that for me was also be being in a very different financial situation, had to stop working for the most part, shame around my reality and ALSO gained a significant amount of weight (as a former athlete and long distance runner, I was always thin and had a lot of confidence around that, so gaining weight hit me hard)… depending on your situation, I highly suggest talking to a free healthcare insurance broker who can find you a Marketplace plan and get the plan even more discounted based on various factors in your life. I love and have great coverage at a VERY low monthly payment through health insurance marketplace. Sadly, for various reasons, I may be about to lose my marketplace insurance and have to apply for Medicaid, if I qualify, so I understand the stress of affording medical issues and treatments, but I encourage you try give yourself some grace and not judge yourself as much 🙂 here are some things I suggest, and bear in mind, some of these suggestions are on the more “holistic” side, but that should be in combo to regular modern medical treatment 🙂
-apply for Medicaid or a marketplace insurance plan through a broker (many are free)
-if qualified, apply for financial assistance from the gov whether through SSDI or disability payments, etc
-many hospitals and clinics have surprisingly good resources for free or discounted medical care AND Mayo Clinic is one of them.. I highly recommend calling up and talking to someone at Mayo. Under my marketplace plan, they actually didn’t work in network with Mayo, but I live in Jacksonville basically right next to the campus so I’ve had to be taken to their ER many times, and financial assistance from Mayo covered ALL of my expenses during my stay!
-find medical treatment studies relevant to your issues that speak to you and apply to be a part of the study
For pain relief:
-radio frequency ablations has helped in some capacity, but my pain is still very high and limiting
Holistic Therapy Suggestions:
-Red light therapy with NIR has been a game changer for my adrenal and autoimmune issues as well as balancing my cortisol and helping my adrenals a bit. You can get panels, mats to lay on, etc. I’m literally laying on mine while writing this lol. You’re welcome to contact me for more info and places you can find them fairly cheap and still legit. I also have quite a few red light products I don’t use, so perhaps I can ship you a product or help find you a great product at a low cost. Red light is seriously my favorite thing ever now
-at home devices like a portable TENS unit. I find them relaxing in general, but also useful for pain relief. Again, happy to suggest some good and affordable ones for you! I’m also hooked up to mine while doing red light and typing this.
-heating pad using infrared heat vs traditional heating pads
-PEMF mat- you can Google this and how it works- these pads are on the more pricey side, but work very well with regular use
-breathwork, guided meditations, and yoga or stretching. I’d suggest going on YouTube and searching for videos or guided meditations, specific to regulating cortisol and adrenal fatigue, etc. Also somatic release techniques
-Massages on a regular basis are so so helpful, although expensive so here are some potential ways to find them for lower cost: -Google and see if there are any massage schools near you. They often offer inexpensive massages given my students who are competing their clinical hours needed to become a licensed therapist, and many students are actually really great. Groupon also has discounts on massages.
-Something called Frequency Specific MicroCurrent is not as widely known among the general public, but due to my former professional athletic career where you often have access to more “elite” and specialized medical equipment and treatments, I learned about this modality as it can help with a huge range of both psychological/ortho and pain to actual general body/organ issues along with faster sports recovery. A practitioner will apply electrodes or wet towels to certain areas of your body and select a custom set of “protocols” to cycle through your body during your treatment. You can Google FSM practitioners in your area. If you explain your complex health issues and how much it’s affecting your life, they may give a discount. I myself am actually a FSM practitioner, so I can definitely help you find one in your area. I’m happy to contact whoever is close to you and give them a call myself explaining your situation and seeing if I can help you get a large discount. All FSM professionals have this strange connection haha and also it’s a kind of small world of us, so it wouldn’t be weird. Your protocols can treat everything from pain issues, cortisol and other hormone regulation issues, there are tons of protocols for adrenal-related diseases and issues, and others relevant to other things you’re going through. I love this modality because you can target such a wide range of medical problems in one session (a series of sessions is recommended)… i use my FSM unit on myself almost everyday and it’s really helpful.
-also expensive but I think it would be a gamechanger for you are NAD drips, shots, or supplements… also look into anything that is good for mitochondria health.
-Take a METHYLATED multi/B vitamin complex. Also a huge change seen from this. I can also share the product I use and I may be able to get it discounted. Other supplements that come to mind would be C0Q10, fulvic and/or humic acid with trace minerals, tumeric, and I’ll think of more later