My last ditch attempt in trying to live...please help
Posted , 6 users are following.
Someone please help me Ive tried so hard to deal with these medical problems that it has led me here in a last ditch effort for help. Im going to be completely honest in hope that someone in the community can save me. Im on the verge of possibly commiting suicide because I can no longer see the light at the end of this horrid tunnel. I want to live so badly but I cant see a way out and living like this is complete hell. So heres the details...
I was diagnosed with marfans clinically at age 16 but showed variant on the genetic test. I possibly could have eds but the geneticist diagnosed me anyways in order to get me into the losartan marfans clinical trial.
I had a pleurodesis on the left side at age 18 at ucla by a thorascic surgeon due to recurrent pneumothoraxes
I have had a border line aorta of 32 mm that never bothered me since I was 18 and now im 28.
I had an small pneumothorax on the left on dec 2016 at ucla hosipital but I went home hoping it would heal on its own.
In march 2017 I had a similar air leak sensation and tried to wait it out by taking percocet and codeine. Since then my life went to complete hell i started getting this horrible swelling in left neck and burning sensation like my blood was on fire, I couldnt swallow too well and developed a high pulse of 100 with a blood pressure of 100 top number. I went the ucla er fearing cardiovascular collapse then they took an iodine contrast ct and found nothing and sent me home. The next morning I woke up with the worst heart pain and swelling in my neck. This led to more percocet and more iodine ct er trips. Since then Ive had drenching night sweats every night with the worst sun burn sensation that wakes me up like 5 in the morning. In mid May I had numbness all over my fingers and feet and thought it was clots so i took some aspirin in case but it caused even more er trips because i would wake up with this painful burning sensation like heart failure or something then if i stayed awake i would just pass out and be instantly woken up by pain. My blood pressure dropped to 70 with a pulse of 105. I rushed to ER and they did another iodine ct scan and found squat. Ive gone to so many specialist and got placed on anxiety meds. Ive seen the cardiologist, pulmonoligist, ENT, endocrinologist, rheumatologist, dermatologist, and pain management but everything checks out. Ive even gotten so desperate with how sick i am every day that I even went to the psychiatrist and took the lexapro and klonopin for a while. Those made it horrible. I was mentally ok even though the flare ups were horrible and never went away but after the psych meds I got super emotional and twitchy. I got off them and dealt with the withdrawal painfully, but now recently Ive developed hives that just come and go anywhere between 5mins to a few hrs all over my body. I found out about mast cells from looking up allergies recently and realized that when I wake up to cold sweat and swelling my eyes are super puffy and my esophagus is super dried out like I used to get allergies and take benedryl. Ive become hyper sensitive to heat and flush with a pulse that gets higher by the day. Every day that passes by my pulse consistently rises with a dull chest pain that I have no idea how to lower. Im taking benedryl, zertec and claritin and histablock within the last few days. My doctors refuse to see me anymore. They pretty much have forsaken me because its in the system that I have anxiety and been sent to a psychiatric ward. Its just happened so drastically I cant cope too well. I was a normal person that didnt have have any of these issues and now i cant stabilize my debilitating condition especially my heart and no one believes me because they think its anxiety disorder. I am struggling but thats because I cant get any treatment or help for 4 months of a nameless illness that randomly flares and wont get any better. Ive looked into the cancers but my cbcs are all normal and all the cts Ive had are so recent and show no tumors or anything. I feel like my blood is poison everyday because it spreads an inflammatory pain throughout my body causing me to sweat cold sweat and wear my heart out. I cant stabilize because no doctor seems to take me seriously enough to help me manage this. My last hope is that someone from the community can help me through this I dont know who to turn to anymore. My parents are sick of my crying and endless pain. Im so sick of this I just want to go back to how a was a few months ago. Is that even possible? Sorry for ranting things are beyond rough and Im so lost and the condition keeps worsening. Thank you for your time.
4 likes, 23 replies
rick27070 mystruggles
Posted
Hello young struggler.
I feel your pain 😢
My wife is in a very similar position. My sons and I are her only support, whike her Drs appear to have given up on her, her Family have foresaken her, believing her problems are anxiety. I don’t know of what I can do to help you physically, but I do have something that may help mentally. I am more certain of this, than anything I have studied in my life.
Christian Universalism.
The Bible actually says, that in the end, all of Gods creation Will be reconciled. And our bodies will be perfect, with no more pain or sorrows.
Book- Hope beyond Hell
Mike_1973 mystruggles
Posted
Hello All,
My name is Mike. I was diagnosed with Systemic Mastocytosis in 2001. The diagnosis was made at a very credible teaching hospital and the diagnosis was confirmed by bone marrow biopsy at NIH in Bethesda.
In short, I have undergone literally hundreds of episodes of anaphylactic shock. Probably over two hundred resulted in near death, full-blown 911 calls and ambulance rides to the ER.
I have undergone most of the treatment regimens you have, and then some. I experience many of the same triggers you do.
But enough about that. Please allow me to share some things that my journey with systemic mastocytosis has yielded.
1.) This is an orphan disease, in that, there aren't enough cases of it to warrant a great deal of medical research.
2.) In most cases, my exposure to the medical profession indicated there is little known and understood about this disorder by most in the field. And in most cases, they quiz "me" about the disorder and how I treat it and live with it. One oncologist came completely to the end of understanding of the disorder and actually recommended that I begin Chemo Therapy for the disorder...."NOT"! My logic was, "thats all we need is to introduce more toxins into our bodies." At one point I had been treated with Dorvocet, Abien, Xanax, Clonapin, Benedryl, Loratidine, Famotadine???? All to supposedly treat "SYMPTOMS" of the disorder, not to cure anything. After years of this, I made the decision to begin weaning myself off of most of these and did. I still utilize the histamine blockers twice a day and before bed and utilize melatonin for sleep. I try to stick to a diet that detoxes and get some type of exercise every day or two, even if just a walk to a light workout and get some UV light exposure, just a little sunlight.
3.) Just in my personal experience, the symptoms and attacks become more frequent and severe with increased toxicity in my body from medications, foods, preservatives and the like. For the sake of symplicity, you may try a couple of books 1.) Everyday Detox, by Megan Gilmore and 2.) Mighty Salads,(Food52) Be careful in these. I have found things that may or may not be considered "more healthy options" that are triggers for me. One was coconut oil and other coconut products for cooking. These have twice sent me into one near miss and one 911 trip to the ER in full blown anaphylactic shock.
4.) Control your thought life. One more source of understanding how your thoughts, and how Psycho, the mind, controls Soma, the body. Maybe try getting an inexpensive CD from Barnes & Noble or most book stores by Denis Waitley, a behavioral psychologist for NASA Astronauts and US Olympic Teams.
So, that's about enough of that. The truth is, we are on this journey. I found my salvation and accepted Christ as my personal savior many years ago. Long before being diagnosed. I depend heavily on my faith in God for strength in living with this, and for healing and guidance in dealing with it. I also have the love and support of my wonderful wife. She has constantly supported me in this and does anything to assist including handing me the right medications in the onset of an attack and administering the right dose of epinephrin. Sometimes we're able to back it down, and sometimes it accelerates into a trip to the ER.
With these treatments and finally finding a general practitioner that is willing to allow me to treat myself (a true gift from God) we live on and enjoy our lives, even with the uncertainties of the disorder. I find that getting my focus off of the disorder and how badly it can make me feel, and onto living life and being thankful for the blessings I have helps me to get into the right place psychologically. And any attacks are simply a brief interruption from the focus of my life.
Since being diagnosed, I have experienced a divorce, a business failure, a bankruptcy, and the loss of any and all possessions I had and living in my truck. But I've also experienced returning to a major university for five years and receiving awards for academic excellence, meeting and marrying my most wonderful blessing, Annie, seeing my son give his life to Christ, starting another business, moving to our favorite and most beautiful place, and having the opportunity to work and travel with my wife every day.
As you may have gathered by now, I'm an eternal optimist. It's what drives me and keeps me alive.
Please allow me to share these words by Lou Holtz: National Championship coach at Notre Dame and coach of the New York Jets, speaker and author. It pretty much sums up what life is really about;
"I want to give you a simple plan. Life doesn’t have to be complicated. I try to keep life simple. Do you realize there are only seven colors of the rainbow? Only seven. Look what Michelangelo did with those seven colors! There’s only seven musical notes. Look what Beethoven did with those seven notes! There’s only 10 numbers. Look what Bernie Madoff did with those 10 numbers. The point I make is, it doesn’t have to be complicated. Say you need four things in your life. If you don’t have any of these four things in your life, you’re going to have a tremendous void. See, everybody needs something to do. Number two, everybody needs someone to love. Number three, everybody needs someone to believe in. In my case it’s Jesus Christ, our Lord and Savior. But the fourth thing you need in your life, is you need something to hope for.
There’s never a right time to do the wrong thing. And there’s never a wrong time to do the right thing. Just do what’s right. I think it’s right to be honest. Right to be on time. See, ladies and gentlemen, enjoy life. Have fun. You’re going to have problems, you’re going to have difficulties. That’s part of life. And don’t tell people about your problems. Do you know that 90% of the people don’t care? And the other 10% are glad you got them, so you’re better off at keeping to yourself. You’re going to have problems. But have fun with what you’re doing. People say, “Did you have fun doing ESPN?” Not really. Because if you have fun being there, people have fun being around. Doesn’t mean I don’t do dumb things, and sometimes I wasn’t real honest.
Do everything to the best of your ability with time allotted. You know, ladies and gentlemen, not everybody can be All-American. Not everybody can be first team. Everybody can be the best you’re capable of being. I want to tell you, if you want to fail, you have the right to fail. That’s what’s great about this country. You do not have the right to cause other people to fail, because you don’t do everything to the best of your ability. When you join a spouse, you bring a child into the world, you join a business, you join a team, you have obligations and responsibilities, and you owe it to other people to the maximum you can at each and every thing you do. It’s not complicated.
And the last rule, is show people you care. When you walk into a room, is your attitude “Hey, here I am, look at me”? It’s like, no. Your attitude, there you are, how can I help you? I wished I knew those three rules when I was 21. I’ve used them for the last 40 years. There’s a statue of me at Notre Dame. I guess they needed a place for the pigeons to land, but if you go and look at it, just don’t look there. Look at three words on the pedestal: trust, commitment, love.
And lastly, the words of Coach Jimmy Valvano, National Championship Coach at North Carolina State University after fighting cancer for years....."Don't give up....Don't ever give up!"
Thanks so much for the opportunity to contribute. I hope this helps.
Stay strong and God bless you.
Mike & Ann