I stay in my home for months at a time.

Posted by tom1970 @tom1970, 5 days ago

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.

Profile picture for Rubyslippers @triciaot

Has the Adrenal Insufficiency been addressed? High cortisol along with hormone imbalances resulting from Adrenal Insufficiency can cause many of the issues you mentioned, along with weight gain.

Meanwhile you’ll want to keep fluids moving in your body - at the very least pump your feet up/down while sitting. Or do calf pushups (soleus pushups) - a well researched exercise done while seated, find out how to do it on the web.

Taskrabbit is a company that hires temp/contract employees to do a wide variety of work. They do hire work-from-home, although I’d guess that might be limited. Jobs are based on whatever is currently needed. That might be data entry, running errands, assist with event set-up, or assembling IKEA furniture at someone’s home.

Technology now does great at supporting dyslexia. Try to get familiar with the tools that will help you the most often. Most smartphones will read to you the text you took a photo of. Most computers will read aloud text you have selected. The Chrome browser has good reading tools.
If you’re trying to learn video editing and there’s so many controls each with their own set of directions, try assigning a color to each button and link that color in your mind to how that button works. Adding the extra sensory feature can boost memory retrieval. Perhaps blue for background control, pick a color for sound tracking, etc.

As usual, I type long answers, so “select” this text and choose “speak” so you don’t need to read the words.

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@triciaot My cortisol is low and must take medication for it, I have cut it in half per my Dr. and was told to stop all testosterone gel. It's been several weeks but haven't heard anything. I do have an Elliptical Machine, Leg Exerciser While Sitting at my dest 12 to 15 hrs. I will run it several times during that period. Thank you for your assistance.

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Profile picture for edsutton @edsutton

Tom, you must find a way to get to the Mayo Clinic.
Ed

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@edsutton Does disability cover it? Thank you, Tom

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Profile picture for JVS @lacy2

...join others in saying sorry to read how your life has changed; without talking about my issues but how life has turned around... after being so active working, raising children, etc. etc. for me and husband it is a very hard pill to swallow. I used to feel bad when I saw neighours aging/being ill etc. but now it is happening to use the truth really hits home. We rarely go out... we are in pain etc. ... we have had to come to terms with it all but how I wish for just one week of the life I used to have... am sure many here do... sorry I am not familiar with your illnesses... but seems a few good responses on here.... such as teaching hospital? Best of luck to you and as far as that man who remarks about your weigh gain: have pity on him for his ignorance.... how rude! Take care and glad your wife is supportive and you are no alone facing all this. J.

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@lacy2 Thank you so much. Take good care of yourself. God Bless.

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To anyone I haven't replied to, please forgive me. I get confused trying to figure out how to work this and see everyone. Give me time and I will find them all. Thank you to Everyone for your kind words. May God Bless you and your families.

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Hello Tom.... I wish to offer you compassion for all your suffering.. Sounds like you've had plenty of tests done, but no real diagnosis yet.. plus all the waiting for appointments that are often scheduled weeks or even months out.. Maybe you need to try elsewhere with a different group... I sincerely hope you can get help soon..

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Profile picture for tom1970 @tom1970

@parrot53 Thank you. I'm ashamed for anyone to see me. Do you know of any medical locations that can study me Head to toe at no cost?? Thank you, Tom

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@tom1970 where are you? What is the closest teaching hospital? Are you on Medicare? Don’t be ashamed, we are all doing our best to get along in life. It just seems like some can cope better than others. It is only by taking one step at a time that the journey begins.

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Profile picture for GetWellSoon26 @vijay26

You may need Physical Therapy and cardiology consult.
Urology check up may also be needed. Did you self medicate w any Over The Counter medicines?
Go to nearby hospital E.R. again. Some virus is going on now that causes certain problems. I do not know for sure.
Hope you feel better Tom.
VJ

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@vijay26 I went to Physical for a number of months for my back. I became so much worse I finally had to quit. Lymphedema appeared a few months later. I did go to to a therapist for my lymphedema as well. Unable to get my abdomen down. I've been to the E.R. a couple of times during and shortly after having a crisis. The ER Dr noted that I did have a Hiatal Hernia as I was trying to sit up. This was before Lymphedema. I saw my family Dr. a week ago. He doesn't know what to do with me. Thank you for our kind message.

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Profile picture for hotfooted @hotfooted

Hello Tom.... I wish to offer you compassion for all your suffering.. Sounds like you've had plenty of tests done, but no real diagnosis yet.. plus all the waiting for appointments that are often scheduled weeks or even months out.. Maybe you need to try elsewhere with a different group... I sincerely hope you can get help soon..

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@hotfooted Thank you for your kind message. I have seen do many "Specialists" for so many "Issues". No one seems to know what to do with me. I told multi Dr.s i"f I was a farm animal they would take me back behind the barn." Thank you. Take care.

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