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

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Dear Tom:
Have you been given the following treatments?
1) Hydrocortisone aka synthetic steroid.
2) Fludrocortisone aka Aldosterone replacement.
3. High salt diet.
These are life long treatments for your condition of Adrenal insufficiency.
If left untreated, emergency situation will occur.
You also need to carry doses of Hydrocortisone injection vials w you, when you go out.
I got this info from research.
Hope it helps.
VJ

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Hi, Yes I'm on Hydrocortisone and have the injection vials. Thank you.

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Profile picture for 1995victoria @1995victoria

also cardiologist sounds like a doctor to investigate, if you haven't done it yet.

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@1995victoria It's been a while but I have. I was scheduled for a new stress-test because I get shortness of breath but I canceled because I just can't take off my shirt. It may partially be my Sleep Apnea or or acid reflux? Thank you.

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Profile picture for kjoed53 @kjoed53

I'm sorry you are going through all this. The first thing I would do is try to find a teaching hospital near you. I would also request a full blood work up, preferably from a hematologist. You may have a severe vitamin or mineral deficiency as the driver in your health issues. You could also have inflammatory markers or something else that a hematologist would uncover. Then I would request a full body scan to see what is going on and where. Your back is not going to feel better until you can start getting your weight down. If any of your current doctors don't take your issues seriously, then find another. Don't settle for substandard treatment.

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@kjoed53 Hello & Thank you. I'm not aware of any "teaching hospital's." My Gastroenterologist and Endocrinologist have ran a large number of test. I haven't been to a hematologist. Thank you for the information. I will copy and check into it.

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Profile picture for GetWellSoon26 @vijay26

I did a little research on your condition and found out that you need IV infusion of Prednisone medication. You may have to take this med for life. Plus renal special diet.
Do exercises mild daily for 15-20 minutes and drink water as much as you can. This med will make you hungry and gain weight. Nothing else.
Clinical trials, you can participate.
Talk to your Nephrologist.
Good luck.
VJ

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@vijay26 Thank you.

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Profile picture for GetWellSoon26 @vijay26

@tom1970

You need to follow a special renal diet.
Enroll in NIH clinical trials.
Take pain meds prescribed by drs.
Go see a Nephrologist, who.specializes in Kidneys and Adrenal Glands.
Continue to wrap your swollen. Leg w Lymphodema.w special wraps.
Need massage therapy and P.T. as well.
Try Meditation and ask Holy Mary, mother of God to help you.She will.She did for me.
Hang in there Tom.
We love you.
Take care. Hugs to you and your dear wife.
VJ

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@vijay26 I apologize for my typo's. Thank you for your kind message and suggestions.

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Profile picture for parrot53 @parrot53

@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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@parrot53 Thank you. I live in Southern Indiana.

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Profile picture for GetWellSoon26 @vijay26

Dear Tom:
Have you been given the following treatments?
1) Hydrocortisone aka synthetic steroid.
2) Fludrocortisone aka Aldosterone replacement.
3. High salt diet.
These are life long treatments for your condition of Adrenal insufficiency.
If left untreated, emergency situation will occur.
You also need to carry doses of Hydrocortisone injection vials w you, when you go out.
I got this info from research.
Hope it helps.
VJ

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@vijay26 I'm not sure if I thank you?! Thank you.

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Profile picture for pml @pml

Tom,
I'm so sorry to hear of all your awful physical problems! How terrible for you! And, after your life and your body were so good! That must be very hard to cope with for you and your wife. Have you read the side effects of your medications, treatments and over the counter drugs? Sometimes the side effects of those things can cause unexpected problems. My husband had stage 4 lung cancer and we often found some of his issues were caused by the side effects of his medications etc. When we found the side effect that was causing problems he didn't stop the medication etc. until he saw the doctor and got his advice about stopping it. One thing that really helped my husband was to eat good quality red meat daily. The iron in it helped his body fight the cancer. My husband lived 14 years with lung cancer and until the last year of his life, he was able to do many manual things he loved such as wood working, repairing household items, leaf blowing etc. I feel it was due to the red meat that he ate that gave him the strength to do what he loved doing. He died in 2024. Another thing that helped immensely was prayer. We prayed everyday and read the Bible. I noticed you believe in God and that's good! After all, God made you and he can fix you!

Has your wife considered going into business for herself? One way to get customers is to offer the first mowing free. Once they see what a good job she does they would probably hire her full time.

You mentioned making money online. There are surveys you can take for money online. They don't pay much but every little bit helps. I take surveys and it's fun and interesting. The one I use most is Branded surveys. Just do a Google search and you'll find them and others. I have them put my payments in my Amazon account. That way you don't have to give them any bank account information.

There is financial assistance for people in your situation. Many hospitals have financial assistance available. Just contact the billing department of the hospital you go to. Also let various churches know of your physical and financial situation such as the Mormon church which is one I personally know of that helps financially but so does the Catholic church and the Penticostal and I'm sure many others. Plus there is always welfare. They help very well with medical if you qualify. You write very elequently and it's easy to read. So you might as well write to your Mayor and your Governor and ask for suggestions on how to handle your current situation. After all, they are elected to help the citizens!

Tom, I'm sorry life has turned out so awful for you and your wife. But with God's help it will get better. I'll say a prayer for you also.
I wish you the best.
PML

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@pml Thank you for your kind message and and suggestions. The Lord has always been So good and is always just a prayer away (actually even closer). Thank you for your prayers.

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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 I will take a look. Thank you for the suggestion.

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