I stay in my home for months at a time.

Posted by tom1970 @tom1970, May 20 7:30pm

Hello, We all have so much going on. I seriously need help but my wife tells me the doctors don't know what to do or how to treat my various health issues. I've had countless MRI's, CT, Scans, X-Rays, etc.. I have a closet filled with business jackets, sports jackets, dress pants, and so any shirts.... Nothing comes close to fitting. I am grotesque! Over the years I stayed active, exercised regularly, and maintained good physical condition. But while trying to stay healthy, I've ruptured my L4/L5 Spine, torn my right ACL, countless sprained ankles, wrists, etc.
I worked for a mfg company wearing a number of hats over a 38 year career. Many of the hats caused much stress trying to keep up to 900 people at on time Safe, Productive, Organized, Profitable. During the evenings I worked as an agent/manager for an entertainer. If I mentioned his last name most of you would recognize the name except the person I represented is a second generation. I worked 7 days a week, 16 hour day's. I'm not dumb but I really had to work far longer than most if I want to achieve. It seemed my mind was constantly racing at full speed, so much stress. One evening (about 10 years ago) I sat down for dinner , I specifically remember taking a bite, it was warm and very good. he next thing I remember my wife is trying to help me lay down. She is little but strong. I had passed out. After extensive testing, I was diagnosed with Adrenal Insufficiency. Around the same time, my previous spine and knee injuries (both had had multiple surgeries) began flaring up again. What was once a strong, healthy body began to change rapidly and dramatically.

I experienced an “adrenal crisis" and have been to the ER more than once. my abdomen would swell severely and never return to normal. My endocrinologist that I had an Adrenal Crisis, he said "No you didn't". The last crisis my BP was recorded right away and extremely low. When I told him the numbers the last time he was kinder. I never realized how many calories you can burn just by being on your feet. I've never been overweight but I had gained 40 lbs as my back continued to get worse. Approximately three years ago, my feet, ankles, and legs and abdomen began swelling excessively. I was diagnosed with Lymphedema. Since then, I have undergone 12 procedures to help manage the swelling in my legs and now wear compression socks. I also have a compression suit that also covers my abdomen. Unfortunately, despite more than a year of treatment, I have seen no improvement.
At one time I was 6’2”, weighed approximately 210 pounds, and was in good shape. Today I weigh nearly 290 pounds, largely due to the severe swelling and fluid retention. My abdomen has become extremely enlarged, and the spine pain has become overwhelming. I can no longer walk without assistance. To take a shower, even if I sit in the shower chair by the time I get dressed the pain is so severe my cane, walker and wife are needed.

I have consulted countless physicians, including spine specialists, gastroenterologists, and other medical professionals. Despite repeated testing, appointments, and evaluations, I continue hearing the same response: that they are unsure how to help. I have repeatedly asked doctors about the possibility of performing a procedure called paracentesis — a relatively common procedure used to drain excess fluid from the abdomen — but my concerns have largely been dismissed. In fact when mentioning "draining" my abdomen the doctors all have laughed about it.

At this point, I am deeply concerned about my health and quality of life. There have been months at a time when I have never stepped outside except for medical appointments. During one Dr visit, a former coworker walked past me in the waiting-room, I questioned if I should say anything because of the way I look then decided to say, "Hello Keith", he turned around, looked at me for a moment, then he said in a Loud voice, "Man, You got FAT!" Moments like that are painful because they do not reflect the reality of what I am experiencing physically and medically (and mentally).

My diet is very limited and primarily consists of protein, vegetables, and Greek yogurt. Exercise has become extremely difficult because of the pain, swelling, and mobility limitations.

If anyone reading this with medical knowledge or experience — may have insight, recommendations, or guidance regarding possible treatment options, I would sincerely appreciate it. Thank you for taking the time to read this. I have had intense therapy for my spine and knee (The pain became much worse after months of therapy. I also went to a licensed therapist for my lymphedema. The one thing that I felt was helping me was water therapy. Unfortunately the indoor therapy pool had a leak and the owner of the clinic was tired of dealing with it and closed it. I live in a small town in southern Indiana, this was the only such pool that I could get to. No longer able to drive because of all the medications I honestly feel like the clock is ticking. I requested if my family Dr. would at least request a personal therapy pool to insurance. I'm not asking for a big fancy indoor pool, just something that would be deep enough and enough do allow me to have some movement. Again, he laughed. *When I began my ramble I mentioned that I always struggled with learning, etc... I have been diagnosed with ADHD and Dyslexia. I am not dumb. Even though I can never go back at least I understand why I struggled and still do when I want to learn how to use an video editing tool for example, All those buttons, paragraph after paragraph of words all melt and blend. It's difficult to explain. My dear wife, the company she worked for shut down last month. She mows cleans the gutters, she does everything. If anyone knows of a way to make enough money online to help pay the bills I appreciate any suggestions or assistance.
What I deal with 24/7: Adrenal Insufficiency, Lymphedema, Fibromyalgia, Sleep apnea, Irreparable spine injury, right knee severe knee patellar subluxation, BPH, Severe Chronic Pain, ADHD and Dyslexia and a few other things I would rather not post/. Thank you to anyone who took the time to read this. I realize if you're here then you are struggling with your health. May God Bless and Protect you. Sincerest regards, Tom

Interested in more discussions like this? Go to the Aging Well Support Group.

GetWellSoon26 | @vijay26 | May 27 10:38pm

In reply to @tom1970 "@vijay26 I'm not sure if I thank you?! Thank you." + (show)

@tom1970
You did Tom.That's enough.
VJ

parrot53 | @parrot53 | May 28 6:07am

In reply to @tom1970 "@parrot53 Thank you. I live in Southern Indiana." + (show)

@tom1970 maybe you could try Indiana University Hospital
https://iuhealth.org/about-our-system
They have doctors that accept Medicare a they are a teaching hospital. If you need help getting an appointment you could ask for a social worker to contact you.

diathomas519 | @diathomas519 | May 28 5:39pm

In reply to @parrot53 "@tom1970 where are you? What is the closest teaching hospital? Are you on Medicare? Don’t be..." + (show)

@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

tom1970 | @tom1970 | May 31 10:06am

In reply to @slarson14 "I am a medical professional. I agree with @edsutton. You are very young. You do need..." + (show)

@slarson14 Thank you. I will look into it.

tom1970 | @tom1970 | May 31 10:12am

In reply to @diathomas519 "@parrot53 @tom1970 I agree- don’t be ashamed at all, seriously. I’m the same way and I’ll..." + (show)

@diathomas519

Jump to this post

@diathomas519 Thank you for sharing and for your kind offers. Today is an extra difficult day physically. I will get back to you this week when I am able to think a little clearer. Thank you.

tom1970 | @tom1970 | May 31 10:15am

In reply to @parrot53 "@tom1970 maybe you could try Indiana University Hospital https://iuhealth.org/about-our-system They have doctors that accept Medicare a..." + (show)

@parrot53 Thank you. I will look into it.

ellu | @ellu | Jun 8 6:42pm

In reply to @tom1970 "@parrot53 Thank you. I will look into it." + (show)

@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

pht1123 | @pht1123 | Jun 9 7:46am

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.

dianestjohn | @dianestjohn | Jun 14 8:51am

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.