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  • The Member Stories section of our site is a place where members can submit their own stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Lori's Story


edriscoll

By Lori Valenti
October 2002

My name is Lori Valenti. I have had an extremely difficult last six months. I just graduated from Umass last Dec. 2001, and got a job that I really loved. After working for the company for about 3 months my boyfriend and I got an apartment together. The very first night I stayed at the apartment I had an awful asthma attack. Over the next 2 months I would go back and forth to allergists, pulmonary specialists, and many other doctors. I was developing skin rashes and becoming very fatigued at the apartment, along with the allergies and asthma. I came down with a bad respirtory infection and finally had to get a lawyer to get my boyfriend and I out of the lease. We had to be out Aug. 1st, this was fine by us.

At this point in time, I thought the hard part was over. On July 11th (and I will never forget that date) I was standing at work and I got a very strange sensation in my head. It was not painful, but is was scary and it lasted for about 10 seconds. Immediately following the sensation I became dizzy and started to vomit. I went into the bathroom and started to splash water on my face, but I was still dizzy and nauseous. I came back into the office and realized my vision was blurred. I asked my boss if she would follow me to the doctors.



 

When I went into see the doctor I told him all my symptoms. He said I was depressed and gave me a prescription for Zoloft. Figures! That was a Friday. I went home that night and slept around the clock until Sat. night, when I woke up for about 1 hour and then went back to bed. Sunday morning I went to the ER. They did a spinal tap on me and told me that I had viral meningitis. Later I found out this was not the case. After several weeks of not getting better I went back to the ER. They did blood work and took a urine sample and told me I was fine.

About 1 month into this, I woke up in the morning and had an extremely rapid heart rate. I went to the ER and the EKG said 168. That was sitting down. They dismissed it as the lovely "anxiety" and sent me home against my will. The next morning I woke up and my heart was racing again. When I stood up I fainted (the first of about 8 fainting episodes), and I went back to the ER. They did blood work and took my urine again and said I was fine. The doctor specifically told me that there was nothing more that they could do for me there, and that I shouldn't come back. That was a nice feeling when I was so scared about my health…

Finally, the following day I was taken to the Mass General and admitted there. I met a wonderful doctor, who is working with me and researching as much as he can about my problem. I was diagnosed there with POTS. My doctors keep telling me that I will get better. The neurologists and cardiologists can't seem to find anything wrong. They just know that my heart beats too fast (and also too slow at night time.)

It has been 3 months that I have been really sick. I am mostly bedridden except for the days that I go to the doctor's office. I wake up every morning feeling like you would with the flu. My arms are completely numb. My heart starts to race. Then I take my meds, inderol and midodrine, and I force my way to the couch. I have no strength at all. Before this all happened I was running about 5 miles a day. I am nauseous all day, and for the first 5 weeks was vomitting a lot. I am so dizzy, for the whole day, and I have some concentration problems and vision blurring. I mostly sleep the whole day because of the fatigue and weakness. And through all this every test that I have taken has come back negative, except for the table tilt.

I have a good support system and I thank God for my family and my boyfriend who have been so supportive. They have also steered me away from doctors who are quick to label "anxiety". My mind is very confused as to what happened to me. We still don't know what was in the apartment that made me so sick. I am starting to become very depressed about my deteriorating health and I pray for some remission. This all just seems like a very bad dream. I try to do yoga when I feel up to it but, unfortunately, that is not too often. I just say to myself every night before I go to bed, " Maybe I'll wake up tomorrow and it will all be gone."

Update: There is Hope, I Promise!

By Lori Valenti
October 2004

Hi everyone!  I want to share my story with everyone, and I hope that it will lift some spirits.  I originally became sick in July 2002, and I was diagnosed with POTS in August.  I saw Dr. Grubb in November, and a few months after that my doctors found the underlying cause of my POTS, Sarcoidosis.  Sarcoidosis is an autoimmune disease that was attacking my lungs and nervous system.  I was given large amounts of steroids, and the Sarcoidosis was put in remission.  The POTS stayed, but some of my more bothersome symptoms subsided. 

Through all of this I was very scared.  I was, however, not going to let this take over my life.  I did extensive research on the diseases, and I found an excellent doctor.  I became an aggressive patient that never went to the doctors without a list of questions.  I began walking very slowly on the treadmill everyday and just built up my stamina.  In the meantime, I was going through what we all go through:  testing out different meds, having very bad days, and having very scary new symptoms.  I did not skip a day of walking though.  Exercise made me feel better and gave me a goal, so I began to do yoga.  Yoga made me very focused and balanced and, though I trembled through every move, it made me very strong.  I began to read books on nutrition and how important it is to our condition.  I cut down on sugar, and I ate smaller portions of food.  (So at this point I began to get in very good shape—even though I was fighting this disease.)  When they finally took me off the steroids, my Sarcoidosis was in remission, and I lost the rest of the water retention that I had.  My medicinal regiment was now only for POTS.  Inderal LA to help the severe Tachycardia, Adderal XR to boost the ever-low blood pressure, and Wellbutrin SR (still not sure why I take that exactly, but Dr. Grubb explained it does something with the chemicals in my brain, and it works!)

OK, so now for some good news…..  A year after I got sick I started back at my job.  This took my mind off of my illness and made me feel stronger.  I had a very accommodating job that let me work a few days a week.  I went back in August 2003, and at that point each month, I was improving drastically.  I know my symptoms.  I’ve learned how to control them, and I don’t fight them.  If I am having a very bad day, so be it!

At this point something great happened to me…  I was doing things that I normally wouldn’t do because hey, I could again.  So, I went to this acting audition in Boston.  I was chosen to fly out to Hollywood and compete in an international competition.  Well, I ended up winning “Best New Actress of the Year” runner up the month before my boyfriend proposed to me, so I was pretty happy.  I was approached in Hollywood by some agents to move out to LA.  Well, I did it.  Obviously it was a tough decision.  I went through many doctors appointments to convince myself that I could do it, and I flew home every three months for check ups, CT scans, EKGs (you name it).  I pay “through the roof” prices for a good PPO plan to keep my doctors, but it’s worth it. 

Anyways, two months after I moved, my agent called me and told me to go on an audition for the CBS reality show Big Brother.  Long story short I got it!  Yup, I was on the show these past few months, the finale just aired September 21.  (Pretty soon you’ll be able to get the DVD.)  I won $10,000 the very first night that I was there.  Now, I do have to say that I didn’t make it very far.  I was evicted after the 3rd week, but that was OK.  I started to actually not feel very good in the house, but that was because I was not sleeping and not on a good diet at all.  I realized, very quickly again, how important it is to take care of yourself.  (BTW, that $10,000 paid off all my medical debt and even got me some other stuff!)  I made great friends on the show and had the most unbelievable experience.  No one ever even realized that I would get up every morning and have to take three pills.  So, I have to take care of myself, big deal, so don’t asthmatics and diabetics? 

I hope that everyone can feel a sense of hope from this story.  I was very, very sick two years ago.  I was very depressed, and I thought my life was over.  But, I hit rock bottom and was not happy feeling bad for myself.  So, I helped myself.  It is so important to find a doctor that will work for you and for you to be completely compliant with treatment.  Also, help yourself as best you can.  Enjoy your days.  Educate yourself with literature on this disease, and be an advocate for yourself.  Do something that will give you a goal to work towards.  Most of all—do not dwell on the negative.  Yeah, we have a lot of stuff going on, but I started to feel best when I was no longer scared.

You can read all about Big Brother 5 on these websites. (Pretty soon I will have one of my own, and I will have a section that tells all about the disease.  I will try my best to keep people educated about the disease, and I’ll keep you updated.)

Lori's website:
www.lorivalenti.net

Big Brother websites:
www.cbs.com
www.jokersupdates.com
www.thefishbowl.com



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