Welcome! My name is Jenna, I am 34 years old and I live in a small Michigan town just west of the Canadian border. I believe that my purpose in life is to help others weather the same storm I am.
At the age of 23, I was diagnosed with a condition called Ehlers-Danlos syndrome, hypermobility type. This connective tissue disorder created a domino effect of secondary and tertiary syndromes: gastroparesis, superior mesenteric artery syndrome, POTS (Postural Orthostatic Tachycardia Syndrome), migraine syndrome, cluster headaches, MCAS (Mast Cell Activation Syndrome) and other weird, associated rarities! I call them the acronyms that are complicating my life.
From being a full-time wheelchair user to jogging on the treadmill, my illness has confused doctors and friends alike. Feeding tubes, PICC lines, surgically placed ports and gauze pads were my besties for longer than I’d like to admit. Through the privilege of treatments, physical therapy and a lot of love, I was able to recover some of my abilities and start a new chapter in life.
Because life is so much more than just illness. I live with my brother, sister-in-law and their perfect infant son and our three combined dogs. My current situation is so full of love and support, privileged is an understatement. I went to college for nursing, getting sick just two weeks before my NCLEX. Due to the circumstances, I was unable to receive my RN diploma. It was devastating, but I’m grateful to have proper knowledge to manage the chronic life. I had to find a passion beyond nursing, one that filled my soul with light, and I found that in writing. This blog has been my refuge for many years, and I hope it has been just as beneficial for my readers! I do have a potty mouth, though. You’ve been warned.
If you are from the metro-Detroit area and would like to connect with me regarding your chronic illness journey, please reach out for support:
IG: @Jenna.Toppi
Explore!
It has been a roller coaster getting my health back on track for the last decade–a lot has commenced. You can start digging here:
How To: Understanding Chronic Illness
Jencyclopedia
Medical Tests, Procedures & Surgeries
Mayo Clinic
POTS Treatment Center
Research & Treatment Info
For all questions, concerns or support, feel free to contact me. ♥
{para}sympathy 
Hey GF… it’s Don from nursing school… WTF… you poor thing.. Are you trying to tell me Shelly messed you up this bad??? LOL I feel so bad you are going through this.. All my prayers and I hope you get through this quickly. I believe..
Don
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Haha Don Shelly WISHES she could have that kind of an impact on my life! But no, I just have a really crappy disease. Thanks for the prayers!
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Jenna,
I am so proud of you for not only your blog but for your sense of humor and positive approach to your illness. You are amazing! XO Mary
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Thanks Mary! I’m trying to keep my head up 🙂 Miss you ❤
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Jenna, I finally had enough time to read your blog completely since we got back from the Mayo Clinic. Honey, I have been here going through this with you from the beginning. There are no words to say how proud I am of you. You have suffered through disappointment one right after another. And everytime you get up and take another avenue. Nothing stops you. All this with a smile on your face (or a smart tushy answer.) lol As you have told me so many times before, all you want to do is help others even when you need to fight so hard for yourself. Self pity is not in your vocabulary. You stand up strong and proud. My heart is so touched by you. I learn from you on a daily basis and I ask myself “how did I get so lucky to have the privilege to be your mom.” God is using you for a greater purpose and you definately are stepping up to the plate in the most graceful way. I couldn’t love you more than I already do. You’re my Jenji. Love, Mom
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Aw thanks momma love you too 🙂
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Jenna you are so strong and I admire your strength and courage through this whole ordeal!!!! The ability to share your story and still have a good sense of humor to try to make others laugh is amazing, keep it up!!!! ❤
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Hi Jenna! So you know Joe and Ardemia who live across the street from you? Well, I’m their grand daughter, Natalie. You may remember me because we used to hang out many a year ago! My mom told me you had a blog so I uh, looked you up. That sounds creepy so I hope you’re not too creeped out haha. Anyways, I’ve read a few entries of you’re blog and you’re writing style is quite entertaining! Although I wish you were writing under different circumstances, i admire your sense of humor and positive outlook. Keep up the great work little lady!
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Of course I remember you! We were good buddies when we were kids 🙂 how have you been? I’m not creeped out at all, I love when people look up my blog to read, makes it all worth the effort to me! I heard you’re not in Michigan anymore but next time you’re visiting your grandparents let me know and I’ll come over to visit
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Haha yes, it’s crazy to see you all grown up, I remember you and your brother when you were kiddos (well, when we were kiddos). And your cool pool. And hanging on my grandparents porch! I’m happy you have found an outlet like this that also keeps others updated on your adventure. Yes, I no longer live in Michigan but I visit often and hope to move back one day. I’ve been living in Phoenix for the last 5 years. I’m visiting the mitten in September and always spend some time with my grandparents…so I’ll let you know when i’ll be over there 😉
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Oh boy those were the good ol’ days. Not a care in the world! And you’re right, it’s nice having this blog so I can let people know how I’m doing without them having to ask all the time! When you’re here in September I plan on being much healthier by then and we should get together 🙂 bring Nathan, too!
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Hi Jenna,
I understand your pain. I am going through this as well with two young kids.
I am going to look into http://www.dnrsystem.com I am inspired by Lauren who went through the program.Here is her blog http://wheelchairtorollerblades.com/
Mike
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Hi Jenna,
I understand what you are going through.I am a young father of two boys and my life has totally changed.
I am going to try http://www.dnrsystem.com I saw a great testimonial at http://wheelchairtorollerblades.com/ the program is not a quick fix,takes at least six months of daily work.
I wish you all the best.
Mike
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It looks a good program based on a concept, with the limbic system as the problem, that makes complete sense. I will check it out. Thanks for the info!
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Hi Jenna,
I am looking into two other things. Please look at a book called the divided mind by john sarno and unlearn your pain.
Also I am going to talk to my doctor about pots and exercise. I read a study conducted by Levine….it was sponsored by nasa as astronauts get pots when they come back to earth. His study was basically to do exercise in a rowing machine or a recumbant bike….please Google this…if you have any negative thoughts toowards what I have shared please do not say so as these items are my hope…I will post another link in a bit for you regarding a cardiology practice that believes in this form of exercise to heal pots.
The first to books I mentioned basically have to do with our emotions and illness….Howard stern cured his back pain with john sarnos methods….very interesting….I wish you the best as I understand this struggle.
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Are you talking about Dr. Benjamin Levine? I was supposed to see him when I was in Dallas at the POTS Treatment Center but couldn’t cement in an appointment. Exercise with rowing/recumbent bike is part of the center’s treatment plan, too. I never had enough energy to do so.
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Yes I wad talking about Dr Benjamin Levine.
Low energy hey…I live in Canada but have hired a USA doctor named be Jacob teitelbaum. He is expensive…but wicked smart,especially when it comes to fatigue…he helped Me a ton before
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Before I had a little setback that I am working through. His website is http://www.endfatigue.com he had a best selling book called from fatigues to fantastic. I think he may be able to find some things that could help your energy. I still am working with him through this little setback….this is just a thought for you…
I wish you the best.
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Thank you very much for all the suggestions and websites! If you poke around at a few of my links at the top of my page I have a lot of helpful books, supplements and sites as well.
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http://www.downrivercardiology.com/drc/pots.htm
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Jenna, I couldn’t be more inspired by you. You continue to impact my life every single day. The first day I found out I was going to Texas I told my self id rather die than go to Texas were more doctors where going to say I was lie, faking the usual, but the day I met you my attitude changed so much! You where such a beautiful young lady with such a life changing illness and you where so positive. I love you like a sister and i’m so proud of you for getting so far, never ever give up! You WILL over come this and there WILL be a happy ending, but the happy ending will mean so much more seeing the fact you have been working so hard for it!! <33333 to the moon and back I love you to death and thank you from the bottom of my heart for changing my life forever and always. ❤ with hugs your POTS sister forever, leah ❤
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You are so strong wise beyond your years. I cannot imagine having this disease at your age with such severity and yet you handle it with such grace. You say I’ve inspired you so much but it’s amazing how you’re 10 years my junior and keep me truckin’ with every inspirational text or message. I will try to keep in touch with you as much as possible, dear. I love and miss you and your mom and we’ll always be POTS sisters 🙂 ❤
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Hi….I found your story while looking for Gastroparesis info. You TRULY are an inspiration! I have GP as well & trying to get to Mayo Clinic. I had Gallbladder Surgery, Thrush Twice, Stomach Virus, Gastritis, Dehydration many times, Colitis, Pancreatitis & Parvovirus. Vomiting every day losing 45 pounds in 3 months. My GP was “thought” to be caused by medication for thrush. Just had more tests…..no answers. On my 3rd PICC Line & TPN Again. I totally Understand chronic illness as I have Fibromyalgia + other health issues as well. Depression is HUGE. Keep fighting & posting. I am looking forward to reading & looking at your smiling face! GOD BLESS YOU💗💗💗
Kelly
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You have no idea how much seeing comments like this keeps me going. I’m sorry you’re struggling so much but hopefully Mayo can help. My GI doctor was Dr. Szarka. If you can get in with him I highly suggest it. He’s very soft spoken but ordered so many tests that gave me a lot of answers about my entire GI tract. Best of luck and God bless you! ❤
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I have GP and have had my own fair share of fainting episodes. You’re the first fellow GP’er I have heard who also faints. Geez, and I thought I was special. Love your sense of humor.
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Perhaps you have some form of dysautonomiia that is causing your GP? They tend to go hand in hand. And you are never alone! No matter how bizarre you think your diseases get 🙂
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When I read this, I had never heard of dysautonomia, so I Googled it. And WOW… I am talking to my doctor about that ASAP, there might be something there. Thanks so much.
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You are such a beautiful person inside and out. I admire your strength, courage and positive outlook. You have touched so many lives including mine. I’m glad you have such an amazing support group. I will continue to pray for you and your family. I know there isn’t much I can say or do but you are in my thoughts and prayers and I hope you get better soon.
Xoxoxo 💐💞
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Thank you so much! You have no idea how much that means to me. I keep writing in hopes to give even just one person the strength & courage to keep fighting. So thank you for confirming that 🙂 God bless!
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Jenna, I am Ashley Parrenellos aunt Linda. I was just diagnosed with GP. So far it is only
Slightly paralyzed and not my intestines, hoping it can control it and end it? So sorry to hear of your trials you are beautiful outside and inside Ashley’s mom is my sister she says you are really a special person put through hell. I pray God continues to give you a positive attitude and strength to preserver! My husband also works. At Pine Valley golf course with a man named Al Voss whose son works with your husband; it really is a small world. God Bless you and ease your troubles!
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Thanks so much! It is a small world. Ashley is such a sweetheart. I’m sorry you’re suffering but I hope you are able to find some relief. Take care! 🙂
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