Pls, Help Mish get back on her feet
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Hi Friends & Family,
You've all been extremely wonderful in being supports this past year # 1!!!
In December of 2011, I was diagnosed with Dysautonomia. This happened at the Mayo Clinic in Rochester, MN. After a cancerous cyst removal in October of 2011, I was told I'd be able to walk (the surgery was on my upper right thigh) and slowly start feeling better. No crutches. Nothing. Well, then a month went by and stubborn me didn't think that me having to be carried from room to room was a "so called big deal". I started blacking out. Couldn't walk without holding on to my son Noah. Finally, I told my family one night, that my chest was hurting (my heart was pounding so hard. Tachycardia. I soon learned). I told them, "I'll be back in about an hour, I'm SURE it's nothing. ". WRONG. I went to triage at Illinois Masonic and my blood pressure was high. Dangerously high. They sent me back to a room immediately and put me on the heart monitor. Seconds later, my room was blaring with loud beeps. I'll never forget it. To this day, I have hospitals turn my monitor volume down. My heart rate was 200 and wouldn't come down. They administered an intravenous drug, a heart medicine to bring the rate down to the 70's. The doctor looked at me and said,"Call your family. You're not going home.". Tears streamed down my face. What is wrong with me???
I was admitted there for about 5 days. Loaded up on Xanax because they couldn't get my heart rate or blood pressure problem. I have asthma so no beta blockers for me or else I can't breathe. Awful.
Finally, I requested to go to Northwestern where my general practitioner worked out of. They transferred me via ambulance. 2 weeks there and I disintegrated. A lab rat. They gave me beta blockers. I was willing to try ANYTHING that was suggested by Dr. Rizzo he was the attending on my floor and head of my care team. Dr. Passman, electrophysiologist, was concerned. I was in a wheelchair and wearing oxygen by now. I thought I was dying.
I called the Mayo Clinic from my hospital bed one day. They said I would have to wait 9 months!!!!
I decided to have my physician refer me and guess what? I was there one week later!!!
There after 4 visits(about a week long each) I was diagnosed. Dysautonomia. I have a failure of my autonomic system which controls my heart rate, my breathing, my blood pressure, my gastrointestinal system, I can go on and on...
These past few months, have been difficult. I don't post all my dysautonomia struggles but, 6/1-6-/4 while hospitalized, I was informed I have to go back to Mayo. They can't help here any longer. I'm 15 lbs lighter in a matter of 3 weeks. I can't digest any longer. I'm tired. My blood pressure will run at 175/110 or 80/50. My heart rate will be at 185 or 40. I just never know.
Now, if you KNOW me, I'm a pistol. I'll work my butt off, if I'm feeling "ok" however, I need to go back and get a full work up. I'm scared but, they saved my life. The reason my goal is set at what it is, is because I paid $20,000 before and owe $3,000 to Mayo before they will accept me. Then, I pay to go to Rochester as many times as I need to. Then I pay to stay at the Kahler Grand where I can be wheeled back and forth after tests. I also pay my rent while gone and make sure my 2 boys Jaxon and Noah are well.
I ask from the bottom of my heart, please help. I feel worse and worse with every flare. Many people with Dysautonomia or POTS get treated like they just have anxiety. Such a stigma. I belong to so many forums for my condition and because of the negligence, many have lost their lives.
With all my love...
Michelle
Until then, I will work and work to make the money I need to get there. I have so much life in me, I don't want to lose it.
You've all been extremely wonderful in being supports this past year # 1!!!
In December of 2011, I was diagnosed with Dysautonomia. This happened at the Mayo Clinic in Rochester, MN. After a cancerous cyst removal in October of 2011, I was told I'd be able to walk (the surgery was on my upper right thigh) and slowly start feeling better. No crutches. Nothing. Well, then a month went by and stubborn me didn't think that me having to be carried from room to room was a "so called big deal". I started blacking out. Couldn't walk without holding on to my son Noah. Finally, I told my family one night, that my chest was hurting (my heart was pounding so hard. Tachycardia. I soon learned). I told them, "I'll be back in about an hour, I'm SURE it's nothing. ". WRONG. I went to triage at Illinois Masonic and my blood pressure was high. Dangerously high. They sent me back to a room immediately and put me on the heart monitor. Seconds later, my room was blaring with loud beeps. I'll never forget it. To this day, I have hospitals turn my monitor volume down. My heart rate was 200 and wouldn't come down. They administered an intravenous drug, a heart medicine to bring the rate down to the 70's. The doctor looked at me and said,"Call your family. You're not going home.". Tears streamed down my face. What is wrong with me???
I was admitted there for about 5 days. Loaded up on Xanax because they couldn't get my heart rate or blood pressure problem. I have asthma so no beta blockers for me or else I can't breathe. Awful.
Finally, I requested to go to Northwestern where my general practitioner worked out of. They transferred me via ambulance. 2 weeks there and I disintegrated. A lab rat. They gave me beta blockers. I was willing to try ANYTHING that was suggested by Dr. Rizzo he was the attending on my floor and head of my care team. Dr. Passman, electrophysiologist, was concerned. I was in a wheelchair and wearing oxygen by now. I thought I was dying.
I called the Mayo Clinic from my hospital bed one day. They said I would have to wait 9 months!!!!
I decided to have my physician refer me and guess what? I was there one week later!!!
There after 4 visits(about a week long each) I was diagnosed. Dysautonomia. I have a failure of my autonomic system which controls my heart rate, my breathing, my blood pressure, my gastrointestinal system, I can go on and on...
These past few months, have been difficult. I don't post all my dysautonomia struggles but, 6/1-6-/4 while hospitalized, I was informed I have to go back to Mayo. They can't help here any longer. I'm 15 lbs lighter in a matter of 3 weeks. I can't digest any longer. I'm tired. My blood pressure will run at 175/110 or 80/50. My heart rate will be at 185 or 40. I just never know.
Now, if you KNOW me, I'm a pistol. I'll work my butt off, if I'm feeling "ok" however, I need to go back and get a full work up. I'm scared but, they saved my life. The reason my goal is set at what it is, is because I paid $20,000 before and owe $3,000 to Mayo before they will accept me. Then, I pay to go to Rochester as many times as I need to. Then I pay to stay at the Kahler Grand where I can be wheeled back and forth after tests. I also pay my rent while gone and make sure my 2 boys Jaxon and Noah are well.
I ask from the bottom of my heart, please help. I feel worse and worse with every flare. Many people with Dysautonomia or POTS get treated like they just have anxiety. Such a stigma. I belong to so many forums for my condition and because of the negligence, many have lost their lives.
With all my love...
Michelle
Until then, I will work and work to make the money I need to get there. I have so much life in me, I don't want to lose it.
Organizer
Michelle Rodriguez
Organizer
Chicago, IL