Meet the Member
By Melanie Bassett

• Deb Henri
• Kathy Howell
• Alexia Anastasia
• Corina Rietbroek-Methorst

Deb Henrie

How many times have you seen a post from Morgan617 on DINET’s forum? She averages 2 posts per day and is near the 2000 mark since joining Dinet in April 2004. I’ll bet I’m not the only one who thinks she is very helpful when answering questions. I’ve also noticed that she often offers comfort to others on the forum by calling them “Sweetie” before signing her name – a comforting thing indeed.

I love to read Morgan’s posts. She often includes comical signature lines such as: worriedaboutyoumorgan, dunderheadmorgan, alldoneinmorgan, bizarromorgan, notamerrymorgan, tootiredmorgy, crazybodymorgan, morganmama and morganzilla – creative and funny!

Morgan’s real name is “Deb.” She is 52 years old and lives in Washington. Her family consists of her husband Dave and two sons, Duane, 30 and Jake, 25. Morgan also has a daughter-in-law, Crystal and three “gorgeous grandchildren.” Her family is completed by a Westie named Chloe and a very affectionate cat named Amanda.

Deb has been diagnosed with barofex failure, hyperandrenergic OI, hypertension, Meneire's disease, arrhythmias (she had a pacemaker inserted last September) esophageal strictures, gastroparesis and periodic paralysis. She has also had a cardiac ablation,which she doesn't like to talk about. She says she was born sickly and has been sick her whole life. She was a nurse for almost 30 years. She has been disabled since 2003.

Deb’s hobbies include knitting and puzzle books. In the past, she quilted obsessively and has volunteered for an AIDS group.

Deb’s favorite childhood memory occurred in third grade when she listened to her very favorite teacher, Mrs. Crane, read “Little House” books everyday after lunch. She is inspired by anyone who is willing to love or give love without conditions attached.

Her, word for word, is what Morgan wrote on her questionnaire. I could not do it justice, for I knew it came straight from her heart:

I, like most of you, have struggled with this frustrating, annoying, disheartening, invalidating, and horrible illness for what seems like forever. I have been called every kind of crazy. I have been embarrassed by what my body does, or doesn’t do. I have spent a lot of time in holes I never believed I would crawl out of. I have lost all of my friends.Having said that, I have gained innumerable cyber friends, become much more assertive, learned ALOT, become a stronger advocate for myself, and also realized that sometimes we just have to ignore the jerks and go with our “gut.” I have become more computer literate out of necessity. I have also discovered there are doctors out there that DO care, although there are many that just don’t.

My illness has progressed from tachycardia and fluctuating blood pressure a few years ago to syncope, paralysis, wheelchairs, a pacemaker, huge weight loss, and an almost total loss of independence. I fully understand what my future holds for me. I know that I am a rare bird that has an illness that is progressive in nature. I am okay with that. I have learned that it’s okay to scream at God and at the unfairness of life. I am lucky to have some family that “gets it” Some is better then none.

I understand that many people are worse off than me, but sometimes that doesn’t make you count your blessings, and that’s okay too. It’s okay to think sometimes your life is worse than anyone else’s on the planet. That passes and you get back on more even ground. Pity parties are allowed.

I believe that, like all things, there will someday be a cure or answer to this illness, just not in my lifetime. But that’s okay. It requires too much energy to sweat the small stuff. I understand that what some perceive as “giving up” is really just being realistic and being okay with it. It is okay to try and control those little things I can, because there are so many big things I can’t.

I believe in God and that He knows the deepest parts of my heart and soul, and that He and I, in the long run, are okay with each other. I totally believe it’s okay to be depressed and need therapy. I support and admire the people who will never give up. I support just about whatever gets people through from day to day.

My wish is that all special DINET members receive that which they most desire. My wish is that, sooner than later, places like DINET will no longer be needed……but am grateful they are here now, as they are needed. DINET’s forum is a lifeline to many and will always hold a special place in my heart….Deb

Kathy Howell

Kathy Howell has volunteered to help me, Melanie Bassett, write the “Meet the Member” column. Thank you Kat! (her nickname). She is also known as Sis, which is what her younger brother Jamie calls her. BigSis0821 is her user name on the forum. She likes to read the forum and is reminded of her youngest brother and sister each time she signs in. You can read Kathy's story on the stories section of DINET’s website.

Kathy is 32 years old. She has a diagnosis of POTS and joint hypermobility. She has been ill for the past five years. Kathy stresses the fact that although she has this syndrome, it does not define her. “It's something I have, not who I am.”

Kathy works as a corrections officer and has been working in this position off and on for the past nine years. She also attends college and should have a Bachelor's Degree in Criminal Justice this summer. (No wonder she doesn't post on the forum!) I need a nap just thinking of such a busy schedule.

Her family consists of her parents, two step parents, three half sisters, two half brothers, and four stepbrothers. There is a running joke in her house about her being the youngest, oldest, middle and only child. (Anyone who is curious how that can be can email her and she will be happy to share “the math” with you).

Her hobbies include singing, writing short stories and doing arts and crafts. She enjoys spending time with her nieces and nephews (when she last counted there were 18). She also likes to hang out with her friends.

When asked about her favorite childhood memory she had many. She decided her favorite was playing softball in the summertime. Her stepfather taught her everything about baseball. Being a young girl, softball was as close to baseball as she could get and it became her passion.

Two things in Kathy’s life inspire her. The first is God, who renews and strengthens her daily and guides her in the direction she should go. The second is love: she has so much love in her heart for other people. She says she has never met anyone that she did not immediately like, no matter how much his or her personality differed from hers.

We are very lucky to have Kathy as part of the DINET as she is very interested in spreading the word about dysautonomia. Thanks for your help, Kathy! We appreciate it.

Alexia Anastasia

This profile gives us a glimpse into the life of Alexia Anastasia, also known as Lexi. Alexia’s symptoms began at age fourteen when she noticed her legs would turn purple whenever she took long showers. At age sixteen she began experiencing severe tachycardia, which her doctor brushed off as anxiety. (Sound familiar?) Alexia was living in Vermont at age twenty when she lost consciousness and was taken to the ER. Her mother took her back to Florida after that instance.

Alexia saw a cardiologist and then an electrophysiologist, who recommended an ablation. She had a double cardiac ablation in May of 2005. She feels that her POTS became “full blown” after the ablation. In less than a week she was on her way to Mayo Clinic in Rochester where she was diagnosed with POTS and informed that she probably should have never had the ablation. Being diagnosed was a bittersweet experience. She finally knew what was wrong, but there wasn't anything anyone could do about it. Alexia is allergic to beta-blockers and has had nothing but unsuccessful attempts with the various medications used to treat POTS.

Many of you will recognize posts from Alexia by her screen name “worththewords.” This name has a special significance to Lexi. It is a reminder to herself that what she says or writes is worth her words. After going through health problems, she really learned who was there for her and who was worth her words.

Alexia is now 24 years old. She lives in Naples, Florida with her fiance' of three years. They are planning to be married this fall. They have a Shih Tzu named Obi.

Alexia’s mother also lives in Naples and is a great inspiration. She has always encouraged Alexia to follow her heart and has supported her in all her ventures. This past year, her mother has been going through chemotherapy but is responding to treatment. Alexia says her mom's attitude and strength has been “nothing but amazing.”

The rest of Alexia’s family is spread out across the country. She grew weary of trying to convince them that her illness was real and thus is not close to many of her family members anymore.

As for hobbies, Alexia is very much into independent music and films. When able, she attends concerts and movies. She also makes documentary films. In fact, one of her goals is to make a documentary on living with dysautonomia. She will be helping DINET create a documentary this year. ( You go girl!!!!!!!!!)

Alexia also loves to travel when her finances allow it. New York City, Las Vegas, and Key West are her most frequent destinations.

Alexia currently makes a living at home by tutoring students grade four through college in English, essay writing and science. This does not compromise her health. (I could use a little tutoring, Lexi). She is also a full-time online student at Nova Southeastern University. She is in her junior year and is majoring in psychology. Prior to her decline in health, Alexia worked in the music business. Since she had spent a large amount of time dealing with “tortured souls,” as many musicians claim to be, she found psychology to be interesting and rewarding. However, her dream occupation is to be a filmmaker. On the film side of things, writer and director, Richard Linklater and Richard Kelly, have been big inspirations and motivators to help Alexia pursue her dreams.

Looking back on her life, one of Alexia's favorite childhood memories would be snow days when she lived in Pennsylvania. Her mom had an office in their home and Alexia's friends lived nearby so it was fun for her to have them over and play all day long (even being nagged by her mom to stay bundled up didn't diminish the fun). Another of her favorite childhood memories would be weekends at her great-grandmother's house when Alexia lived in Tennessee. There would always be a big gathering of family there and that created very fond and loving memories, especially now that her great-grandmother has passed on.

Like many of us, living with dysautonomia has been frustrating for Alexia. It has made her change her way of living, whether she wanted to or not. Still, she has found a way to survive it all and keep her dreams alive. We all wish you the best in the future, Alexia.

Corina Rietbroek-Methorst

Corina Rietbroek-Methorst volunteers with DINET. She is 43 years old and lives in the Netherlands. When I told my sixteen year old son about where Corina lives, he said “then she is Norwegian.” Being the geographical whiz that I am, I said, “It is a group of countries.” My husband looked at me and said, “Are you serious? The Netherlands is Holland.” =)

For days Corina thought about what to call herself on DINET’s forum. She decided on Corina, as she figured she wouldn't remember any name but her own.

Corina is married to John. They have two GREAT sons, Christian (almost sixteen) and Justin (twelve). They are the loves of her life and are a tremendous help to her.

Corina was diagnosed with POTS following surgery in 2002. She asked her Neuro professor about dysautonomia and he didn't have any other patients with it. He is known to be the best in the field in her country.

Life took on many changes after Corina was diagnosed with POTS. No more tennis (her favorite sport). She had to say goodbye to skating, driving, and a great job. Still, one day she realized that her life wasn't over and that there were still things to enjoy: the sun shining, being in her recliner watching the garden, a sweet card from her email friends or a smile from her boys. Those are the things that make up Corina’s life. “Life” is her inspiration.

Corina’s hobbies include reading and making cards. She would like to start making bracelets. She enjoys watching movies (Out of Africa is her all time favorite). She also enjoys playing Trivial Pursuit with her boys. She also states, “Oh and not to forget: going on holidays!!!!!!!! I LOVE to travel (we bought a van which is comfortable for me to travel in to other countries and visit musea, markets and meeting the local people!” (I love the way that she phrases things, I can just hear her accent. I had to quote her.)

When asked about her favorite childhood memory, Corina described going to the beach every summer. Her dad was in the navy and not home most of the time. Her mom didn't drive at the time, so they went by bike. Her mom, big sister and Corina would ride their bikes to the beach early in the morning and then play all day. It was a trip of about 10 kilometers. Her mom talked them through the bike ride home and bought them ice cream, which helped to keep the kids motivated to keep going.

Corina fondly remembers the evenings her family sat on the couch after a day at the beach, freshly showered and slightly glowing from sunburn, watching the television. Those were good days.

I read through many of Corina's posts and thought I would include my favorite in this column, as I think it shows us what a special person she is:

This morning I went on my electric cart to our local garden centre to buy some plants for the garden. When I got there, the lady told me to look around and ask for help if needed. And so I did. And you know, the sun was shining, people were so nice and friendly and there were so many plants and flowers. So, of course I wanted them all. (yep, that's me)

I asked the lady for help and she put on my cart as much as I could take and another lady was watching and said, “you can take more on your cart than I can on my bike!!!” When I drove home again everybody was smiling at me, because I looked like a little driving garden centre, so I smiled back. This really made my day! I also bought a lot of roses and I'm sending each and every one of you a pretty pink rose to let you know that I think of you and to let you know how much I appreciate your friendship. I'm throwing a lot of roses in the Canyon for everyone who is in there and hope that you will really, really soon be able to come out.

Does your place of business or family give to charity? If so, please let them know about the Dysautonomia Information Network, www.dinet.org. DINET is completely funded by member's donations and can't exist without them. Thank you!

Dysautonomia News is a quarterly publication of the Dysautonomia Information Network.
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