Hello,
My name is Jackie and this is me over here to the right and here is a link to my very first post. Here’s what you need to know to be able to coherently read my blog:
- I started this blog in August of 2012 to keep my family up to date when I had a big visit to Mayo Clinic. It has grown and changed so much since then!
- I have a chronic, disabling illness called POTS. I have been to Mayo Clinic in Rochester Minnesota for POTS and also went to The POTS Treatment Center in Dallas.
- I have a genetic disorder called Ehlers Danlos Syndrome, Hypermobility Type and an autoimmune disease called Sjogren’s Syndrome. Both of these health issues created the perfect storm for autonomic dysfunction to take over. Read my full story here.
- I am HUGE of science and evidence based medicine. I get my information from reading peer reviewed, medical research journals. I try and spend time each week reading medical literature.
- My passion and purpose in life is to help others.Now that I am unable to work and do that as often, I try and help others through this blog.
- I have a Bachelor of Science in Psychology and minored in Child Studies, but am currently unable to work due to my illness.
- I believe when patients are given the proper tools to manage their healthcare, they are their own best advocates.
- My diet is pretty restricted. I don’t eat egg, soy, dairy, or gluten. I also follow a low FODMAPs diet to keep my grumpy gut happy.
- My family has been my hugest support throughout this whole journey with chronic illness. I don’t know what I’d do without them and I cannot wait to get better and starting repaying them! My Mom is my role model.
- My husband is named Jake and he is the man every woman wishes she could find. I am a stepmom do the coolest little girl I have ever met.
- I live in a smallish midwest town with my husband and sometimes my stepdaughter.
- Living with chronic illness is tough, however I am an optimistic, happy person. My hope is some of this rubs off on others 🙂
Happiness is contagious! keep on spreading it!
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I agree it is contagious and I will keep at it 🙂
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Very inspirational!
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Thank you!
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Hi, Jackie!
I have POTS and have experienced this clinic firsthand. I have a multi-system version of dysautonomia including CVID, POTS primary/secondary with venous pooling, renal, colon, bladder and metabolic failures.
I was desparate to find help for my condition which devastated my body, life, family, and finances. I was a patient here and in bad shape when I arrived.
I was told that dysautonomia was “a symptom of being bedridden after the flu and a major surgery” and that my heart and body muscles had atrophied therefore needing exercise. The other symptoms had to be “all in my head”. Dr Suleman insisted that I did NOT have dysautonomia even though I had been tested and diagnosed at a clinic associated with the Mayo Hospital. He insisted that other system failures did not coincide with dysuatonomia – that my presentation was not typical.
I insisted that he hospitalize me, remove me from all meds and rerun tilt table and autonomic tests, Not only was I very positive for pots, but I was now sick with serious infections that he said didn’t exist. I then insisted on continuing antibiotics and antifungals as prescribed by my immunologist
Dr. Sulmann refused and instructed mnursee to ignore my immunologists instructions/medications in favor of his exercise/biofeedback program. The infections were so bad that I was hospitalized for iv antibiotics/antifungals and renal failure.
Upon followup with Dr. suleman’s , my mother and I witnessed the nurse destroyingdeath test records from my chart.ll lucilyl I had alrellady had a copymade
I almost died from etabolic acidosis by dr suleman denying that
rany symptoms could be seriousr in nature or could be life-threatening.
O
I left his practice immediately and later read of the suit filed against I’m him for the death of his patience for negligence as recorded in Westlaw records.
Run, don’t walk, to Dr. blair Grubb in Toledo, OH
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Oh my goodness, what an awful experience! I am happy you got out of there. I’m not sure which clinic you went to, but it’s not the one I just got home from. I went to Dr Kyprianou’s clinic and she has helped me so much!
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You are definitely at the same practice. While its great ti hear your optimism, its sad that you are being charged for a “program” that consists if simple coping techniques already available online for free.
And they will NOT cure you or “reset” your ANS. And trying to find the magic cure leaves everyone prone to gimmicks claiming to do so.
Stay positive and healthy but save your money by seeing the leading international specialist who actually knows how POTS and coinciding dysfunctions work and a comprehensive plan to keep u safe and healthy.
Best wishes on your journey!
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Hmm… I don’t know. There was no doctor there by the name you gave and they never claimed they’d reset my ANS, that I don’t have POTS/dysautonomia, or asked me to discontinue any medications. They explained that because of POTS my ANS tends to be in sympathetic mode (which is a fact) and I can learn to put it into parasympathetic mode which relieves some of the symptoms. So basically I can control my ANS which POTS is also trying to control. As for their techniques… Someone could learn everything I learned to get my psych degree by looking up information and watching videos online, but that doesn’t mean they’d use it correctly.
This treatment may not work for everyone. I understand that, but for me it has worked wonders so far after the Mayo Clinic’s suggestions did nothing except mask symptoms. I met several people through treatment who it helped and am reading the blog of a girl who just ate food and kept it down for the first time in a year. I’m sorry it didn’t work for you. I’m satisfied with the information I have between this and my Mayo Clinic visit. I am all for sharing your experience. However, since the doctor you are referring to is no longer at the practice (when was your visit?), I don’t think it is fair to continue to say such negative things about the center as a whole rather than about the individual doctor you saw.
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I am so glad I found you and your blog! We have so much in common! I am also discovering my inner health nut! I have just hit my 3 month mark from the start of my treatment at the POTS treatment center in Dallas, TX. To me all of the disciplines learned can help those with POTS and those with out a chronic illness. It is about living your life as healthful, joyful, and fulfilling as possible! I have made great strides physically, mentally, emotionally, and spiritually! It is beneficial for everyone, but having doctors with knowledge about your specific condition is so liberating! That is one of the draws to the center. It was the first time in my dealing with acute POTS and CFS that I had a panel of doctors in many disciplines join together and answer any questions or concerns I had about my nervous system and health accurately and patiently. They even perfectly explained the troubling tremors that some more severe patients have. I have had Autonomic Dysfunction and POTS acutely for 2.5 years and an ongoing battle between the PNS and SNS for years. Now I am more informed than ever before, and making a beeline towards improving my health!
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Thanks! 🙂 I really enjoyed my experience at The POTS Treatment Center. I’m happy I did Mayo Clinic last year because I was able to see so many different doctors and have technical tests to better understand the root of my POTS, but they weren’t able to get me better. I truly believe Dr K will be the doctor who gets me back to my life. I think the ideal set up would be Dr K and Mayo Clinic all working together. 🙂 It is very encouraging to read about your progress. It gives me bunches of hope!
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Hi Jackie- I am very happy I came across your blog. It’s a great read and very inspirational! I look forward to following!
-Andrew
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Well thanks! 🙂
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My pleasure!
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Your Jake sounds wonderful and you sound so happy!
Thanks for stopping by my blog! Have a great weekend. Hugs Paula xxx
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We are so grateful for our little family and quite happy with life. 🙂
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What more could anyone ask for! Hugs to you all. xxx
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Hi Jackie! I don’t know if you participate in the blog awards but I wanted to nominate you regardless for the “Rose of Kindness” award. Thank you so much for your kind comments on my blog, they mean so much!
http://connectivetissuedisorders.wordpress.com/2013/10/01/the-rose-of-kindness-and-unique-leaves-awards/
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Well thank you Katie! I am honored. 🙂
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I nominated you for a Liebster Award. Here is a link to my post where you can get the instructions for acccepting the award. http://juliesspoonfulofsugar.wordpress.com/2013/10/13/wow-an-award
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Newcoming reader to your blog. I like how you express that you are “living a happy life and life as seen through the lens of chronic illness.” You acknowledge that the lens is merely a part of you and not the whole you. Way to go! I share that belief system about dealing with our chronic conditions and how we with that viewpoint can inspire others. While we cannot volunteer our energy to help others in the physical sense no longer, like volunteering in person (like you, I did much volunteering when I had more energy in my younger years) but instead are using the internet as a space to help others using the energy medium we have at our disposal — our thoughts and fingers.
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Hello! I love reading your blog and so I have nominated you for the Liebster Award! Congrats! Check out my post for all the details: http://myjourneythrume.wordpress.com/2013/10/19/dearest-beloved-we-are-gathered-here-today/
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Well thanks a bunch 🙂
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I have given you a “shout out” on my blog – my version of a Liebster award because I can’t afford to expend the energy writing or answering questions. If you want to pay it forward, please highlight 10 bloggers on your blog. If you’d like to participate even further, you can come up with 10 questions for them to answer and/or answer the questions posed by Jess or Marie (linked on my blog: http://elizabethmilo.com/2013/11/10/award-season/). Mostly, I wanted to say thank you for your well-researched, thorough and honest writing. And for the tireless advice and support you give to so many of us (I read your comments on other blogs!).
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That’s a good idea. Sometimes I get awards and I don’t have energy to do them. This is a great way to handle that. You’re so sweet. I actually don’t feel like I’m doing any service, I feel honored for others valuing my perspective. 🙂
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Very interesting. I have not heard of POTS.. I look forward to following you. I am also from a very small town in the Midwest, Plano Illinois. I now live in Oregon, however all my relatives are still in Illinois. My husband and I will be leaving Oregon in 2 months for Mesa Arizona.
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What a small world! I live in LaSalle County, so not too far from Plano. I’ve always wanted to live in Arizona, but I’m so attached to my family that I think I’d lose my mind. Best wishes on your move and enjoy the warmer climate! 🙂
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I know LaSalle County very well. I was born in Earlville. I wrote about living there in my blog. I still have lots of relatives in Sheridan and Earlville. Starved Rock was one of my favorite “peaceful” places to spend time. AZ is beautiful. You are so very lucky to have family that you are attached to.
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Starved Rock is such an amazing place! The canyons are just beautiful. Growing up, we went hiking nearly every weekend, weather permitting. I live 15 minutes away and feel so fortunate. It’s a bummer my illness keeps me from taking advantage of it as much as I’d like to. I hope you find somewhere equally peaceful in Arizona. I’m sure you will.
I consider my family, immediate and extended, to be the best thing that has ever happened to me. Because of them, I truly feel I can do anything. They are supportive of me and show so much love. It is overwhelming when I think about how fortunate I am to have been born into it. I’m not trying to brag, I’m just saying I know I am lucky and appreciate it in the way it deserves to be appreciated.
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Hi Jackie, 🙂
Dropping by to let you know that I’ve nominated you for the “Dragon’s Loyalty” and “Blogger of the Year” awards. Whether you engage in them or not I definitely had to include you in my nominees (there’s never any obligation to participate though).
http://tissuetales.com/2013/12/12/dragons-loyalty-and-blog-of-the-year-awards/
Cheers xx
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Thank you! You’re so sweet. 🙂
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This blog is quite possibly one of the most inspiring blogs I’ve ever had the privilege of stumbling upon. I am so glad I found this- and that I found you. I wish you the absolute best in your journeys and I can’t wait to read more!
Xx
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Awww, thank you! 🙂
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Hi there! I’m a fellow POTS sufferer. Your posts are so inspiring, thank you so much for doing this.
I love your blog, and just nominated it for the Liebster Award 🙂 Check it out at http://coffeewriterepeat.wordpress.com/2014/04/19/and-the-award-goes-to/
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Looking forward to reading your blog. Thanks for the follow!
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No problem. I wouldn’t have followed if you weren’t an interesting writer! 😉
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Send me some of that positive MO JO! 🙂
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I’m glad to read about another’s struggle with multiple system dysfunction. I, too, have this, have been put through the ringer, and still remain positive about my life. Though others can be frustrating at times. Argh.
We know our own bodies, have a right to be heard, make any decisions in our course of care, and be respected regardless of differing opinions.
I love your blog, thank you for your positive feedback and support to those still searching for relief.
My best advice is know your body, research your options, go with your gut feeling, and stand your ground. You can find a balance that works for you! But, in this rarely seen diagnosis, we are the captains of our own ship pioneering trails to discovery and possible answers to help others. 😉 That is pretty commendable for us all to be a part of.
Thanks for everyone’s courage to try new things and share with the community.
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Thank you for your compliments on my blog and your clear advocacy for everyone handling chronic illness!
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HI Jackie,
I have enjoyed and appreciated your blog and have nominated you for the Versatile Blogger Award. You can click through to my post here with the details.
https://beyondtheflow.wordpress.com/2014/11/24/yippee-accepting-the-versatile-bloggers-award/
xx Rowena
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I also have POTs and took about 20 years to get diagnosed, I ve just found out I too have Eds. For years I thought I was going mad. Doctors just did not understand. My Pots has come and gone over the years. When it goes away I’m at peace and love life. I’m active love socialing. Last year I got really poorly with a staph infection, sepsis and to top it off it infected my heart with endocarditis. I also had my pacemaker removed as it was infected too. I managed to get through that, u spent 3 months in hospital. But as a result my pots has reared its ugly head. It is back with avengence, I’ve been put on ivabradine and were trying to get my dose right. I am so frustrated and fed up living with this. I miss working. I love my family and I feel so guilty all the time. How do you cope day to day physically and emotionally. I’m struggling with brain fog too do you?
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First, thanks for this great page! Next, I have an appt coming up at Vanderbilt but it is just 2 days there. I wonder if I should go with that or reschedule with Mayo. Mayo seems more thorough with more days required and integration of other specialty areas. Lord knows I have a lot going on! Any suggestions for me? Thank you so much for this page and all you do for your fellow patients 🙂
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I wish I could answer this question more thoroughly, however I only have firsthand experience with Mayo Clinic. It sounds like you probably heard my post where I discussed cons of Mayo, as I see it?
https://lethargicsmiles.wordpress.com/2013/11/24/its-not-all-sunshine-and-butterflies-the-negatives-of-mayo-clinic-and-the-pots-treatment-center/
I have heard of patient accounts from both centers. Some patients have been happy with their experiences at whichever center we are talking about, while others have been unhappy and wish they had chosen a different autonomic center. Not to complicate things, but another place to consider is Cleveland Clinic.
If you go to Vanderbilt, my only suggestion would be to be sure you have a consult scheduled with the doctor after your testing to go over the results, and that it will not only be a phone consult (unless a phone consult sounds preferable to you, of course). Both places are doing ongoing POTS research, however it does seem Vanderbilt is putting out more.
Overall, my week at Mayo was what is typical of someone going through the autonomic clinic. The endocrinology consult where we discussed my thyroid and the thyroid ultrasound were added on after I got there, and so was the GI consult and testing, however I had to be game to stay an extra 5 days for the GI consult.
Are you familiar with the forums on DINET, or POTS Facebook groups? If you go on either of those and search, you will find people discussing their experiences, and even people like yourself who are deciding between the two.
DINET: http://forums.dinet.org/index.php?/forum/4-dinet-forums/
A POTS Facebook Group: https://www.facebook.com/groups/PosturalOrthostaticTachycardiaSyndrome/
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Vanderbilt. Mayo has not been the best fit from my personal experience. They do a lot of tests but not much on this problem when I went.
I think they are great if your diagnosis fits in the box? But nice people, nice facility.
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Thanks for visiting my blog Jackie! I love to know there are more of us happy positive people wanting to make a difference through our trials with health. I am in full support of your journey wherever it takes you. Just looking at you picture, I feel joy.
Many blessings to you,
Anna
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Thank you smoky hope for sha inf your story! I am so sorry that you have had to heal with all this. I also studied psychology and now work in research… which I think helps to be mor practice and informed in my case. I’ve had a Sjogren’s diagnosis since 1989, the idiopathic trigeminal facial pain began in 2000, a Graves diagnosis in 2010 and now dysautonomia. I am currently dealing with the battle for IVIG pr approval now and a lm drudging through the literature and peer-reviewed publications to submit with my appeal. Would you perhaps be willing to chat over a call? I would love to hear about your experience, response to the IVIG you weee able to try and am honestly just looking for as much information and experiences as possible before submitting my final appeals.
Let me know. You can reach my by email and I’ll send you my number.
With gratitude,
Nat
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Dumb phone… it was intended to read, thank you so much for sharing your story! 😂
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Autocorrect is too funny! I figured it out. 🙂
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Thanks for reading!
I am so sorry for everything you’ve been through. I bet your research background helps a lot with staying on top of your healthcare! I was only able to try IVIG for 2 months and it was due to a pharmacy error, so I am currently fighting for it too.
I wish I could do phone calls because I love helping others out who are going through what I am, but I really can’t with how my health is right now and Christmas coming up. I barely am able to have regular phone calls with family. I hope you understand! When I feel up to it in the future, I plan to write posts about IVIG, including sources. If you have specific questions, please send them to me either here or using the contact form, and I’ll work on answering them as best as I can!
Are you familiar with this Facebook group for POTS and Sjogren’s patients? It’s a great place to get more information and experiences: https://m.facebook.com/profile.php?id=399414810085008&tsid=0.8054371831286544&source=typeahead
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Can you email me: mikjul33@msn.com. I’m hoping for your help in that we can talk about all that finally helped you get approved; as I have Sjogrens, MCTD and POTS. Insurance approved and then denied one day before I was starting treatment.
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