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Tag Archives: POTS

Dysautonomia

What to expect from your first dysautonomia evaluation

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A few months ago, I booked an appointment with a physician who works in the dysautonomia center at Johns Hopkins. My cardiologist had given me the diagnosis of POTS but wanted me to see an expert. I tried googling what to expect and couldn’t really find much so I’ll share my experience here!

History

He wanted to know everything going back to when I was 9 years old and diagnosed with type 1 diabetes. He asked about my dad’s neuropathy, my eye exams, everything he could think of regarding diabetes- not just my A1c (which seems to be all other doctors focus on).

He asked for details around my RA- leading up to diagnosis, how each biologic treated me. I could tell he was concerned about me being on Rituxan. He admitted that my rheumatologist knew much more then him in regards to treating my disease, but he thought Rituxan wasn’t the safest long term medication to be on and he’s right, it’s not, but I’ll save those worries for another day.

Fatigue

This was a big part of our conversation and possibly the most difficult part. If you have extreme fatigue, like me, you’re often spending your time “pushing through”. I drink a ton of caffeine, sleep whenever I can. My doctor wanted me to rate, using a battery scale, how my fatigue had changed over the years. I recalled falling asleep getting my haircut when I was diagnosed with RA and shared that my kids even plan their activities around when they know I’ll need to nap or be in bed.

Current Symptoms

This was a simple discussion- why? Because he had read my notes and actually spoken with my referring physician. What I liked the most was that he had me rank the top 5 issues (he referred to them as barriers) I was having in order of how much they are disrupting my life. I tend to gloss things over with a good old “I’m fine” but he wouldn’t allow it.

Physical Exam

The usual- heart rate, breathing, “follow my finger with your eyes”. He then assessed my reflexes- knees, feet, elbows, hands, chin, and forehead and asked “have you always had hyperactive reflexes?”. I told him I startle easy but it seemed like a silly thing to notice.

I warned him about my crappy knee- he asked if I had trouble moving it and I told him my knee would make some nasty sounds but could even hyperextend so I was fine with movement. Another look and a question- “have you always been hyper-mobile?”. He then had me bend my thumb back to touch my inner arm (I thought every one could do that?!).

Education

My doctor did a great job of explaining POTS- exactly what it is, how many people have it, how much is still unknown. He also explained why he didn’t think I have diabetic neuropathy but that he is concerned that Rituxan may be damaging my nerves itself or by causing an autoimmune response.

Next Steps

A few more tests– importantly an EMG followed by a skin biopsy. Also a tilt table test– my doctors had initially tried not to have me go through this testing because my vomiting was so violent but it is important for insurance and getting authorization for additional testing and treatment.

I am to drink a minimum of a gallon of water a day (can use Powerade Zero towards the total but caffeine doesn’t count). I smartly told him I already drink almost 100oz a day and then my math caught up with me. It’s more than that…

Two pickles a day! He said forget the thermotabs- pickles are inexpensive (in comparison) and a good lifelong treatment. #PickleLife

IV Fluids– He would really like me to start twice weekly IV fluids. In theory, this is great- I know after my bag of fluids with Rituxan, my dizziness and heart rate issues are nonexistent for a day or two. The problem is figuring out how I can possibly get infusions twice a week while I work full time and care for my family (and myself).

The Plan

I’ll get my tests scheduled, buy more pickles, log my water, and keep taking my meds. Once my results come back, my doctor will do a few things- order more tests if needed (but he said he’d rather not) and speak with my rheumatologist in regards to treatment options.

He’s concerned that my high level of fatigue is more POTS related than RA. He may be right as no biologic has ever lowered my level of fatigue. I’d hate to think that I’ve been unnecessarily pumping harsh drugs into my body when I could have maybe had them less frequently or at a lower dose.

He made sure to stress that POTS is a real syndrome. He said people struggle to get a doctor to take them seriously and often end up seeing “professionals” who aren’t doctors and don’t actually help patients in the long run.

If you’ve seen a dysautonomia specialist, was your experience similar to mine? Anything I missed?

Rheumatoid Arthritis Type 1 Diabetes

I am afraid of my body.

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My system (used here to reference my entire being- mind, body, and soul) is a mess. It’s as if my body and mind are two separate organisms who used to be friends but now barely utter a “hello” when they see each other.

I find myself constantly tiptoeing around, afraid to set off the bad temper my body has. I slowly get dressed, pulling on compression socks in slow motion as to not upset my already very sensitive leg muscles. I sleep in compression tights in hopes of not waking up in serious pain throughout the night.

I snack on pretzels all day long, starting early in the morning as I drive to work. I try to have something salty in my stomach in hopes that I won’t find myself vomiting, seemingly out of nowhere. I chug electrolyte enhanced water, even when I’m not thirsty at all, to try to appease my body and it’s abnormal sodium need.

My mind gets angry when my continuous glucose monitor beeps incessantly while I’m trying to sleep. My blood sugars are rising and falling without much warning lately.

The unpredictable nature of my body lately, especially the violent vomiting, has my mind feeling so many emotions. I’m fearful of the intense pain that I’ve been feeling lately. I’m nervous that I could vomit in the middle of the grocery store, without warning, especially since I just got quite ill at work and am still embarrassed. I’m frustrated that others take their good health for granted. I’m sad that this is the body I’ve been dealt with.

But I’m also proud. I’m proud that I am still working full time with additional advocacy work on the side. I’m proud that because of my illnesses, I’m raising two very empathetic children who understand that a lot of diseases are invisible. I’m proud that despite the pain and vomiting, I still make myself go to the gym a few days a week for a pretty intense workout. I’m proud that I’ve created this outlet to share my life so I can connect with others and show them that they are never alone in the battle with their own body.

Hope Rheumatoid Arthritis Type 1 Diabetes

Welcome 2018!

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Hi again! It’s been awhile since I’ve posted and like a lot of bloggers out there, I’m going to promise you that I’ll be writing much more in 2018. Writing helps me tremendously, I feel better when I share and feeling better is always the goal!

When I initially reflected on 2017, the word “okay” came to mind. But as I dove in, I realized that 2017 was much more than ok. Sure there was pain, there were tears, there were doubts, but I’m going to focus on the good things:

Advocacy

  • Attending the HealtheVoices conference for the second time was incredible. I was able to meet even more amazing advocates and because of those connections, I was able to work on great projects like fighting the Obamacare repeal and helping Hurricane victims get the medical supplies they desperately needed.
  • I was invited to Pfizer’s ReAl Talk Summit where patient advocates and bloggers like myself, got to help shape Arthritis.com to help Rheumatoid Arthritis patients get the information they need on a variety of topics, not just their disease.
  • Until my health got in the way, I had the privilege of being a Community Manager and writer for CreakyJoints. I learned so much about how to manage my own site better and I was able to interact with some amazing writers- I really suggest you visit CJ and take a look yourself.

2018 already holds a lot of awesome advocacy opportunities- you’ll see me as an advisory board member for the 2018 HealtheVoices conference and as a steering committee member for the Autoimmune Summit in March.

Rheumatoid Arthritis

  • I started seeing a new rheumatologist in 2017 (mine retired at the end of 2016) and she has been a wonderful fit for me. She values my research, loves to hear about my advocacy, and lectures me on getting enough rest (I really need someone to force rest on me and my body!).
  • By the end of 2016, Simponia Aria was added to the list of biologics that had failed me. I tried adding Plaquenil in March and quickly found out that I am incredibly allergic to it. The positive? I won’t have to wonder if it would have helped me, I definitely know it can’t!
  • Knee Surgery- I’ve posted a lot about this so I’ll spare you the details but this major surgery has given me so much pain relief and freedom. Despite the hard recovery, I don’t regret having it done. My surgeon is hopeful that I’ll get a year or many years before having to have the knee replaced.
  • In July I started Rituxan. My rheumatologist told me that although most people get 6-9 months of relief, she thought I should be prepared to get infusions every 4 months based on the severity of my disease. Rituxan has been wonderful to me. My husband has commented that he sees a “pep in my step” which is something I never would have described myself as having. I didn’t realize how much Rituxan was helping until I hit that 4 month mark and started flaring. I’ve just finished up my 2 infusions and hope that early in 2018 they’ve kicked in and my year will be off to a great start!

Type 1 Diabetes

  • This year I also started seeing a new endocrinologist (my previous left right around the same time as my rheumatologist). Even though I happened upon this doctor by chance, she’s perfect for me. Very tech savvy, considers me an important part of all decision making.
  • I left behind my Medtronic 530G in favor of the Tandem T-Slim with Dexcom integration. I haven’t looked back. I love my new pump, love seeing my CGM data on my phone and watch.
  • I had an opportunity to test out the FreeStyle Libre courtesy of Abbott (blog post about my experience coming soon, I promise!).

POTS (Postural Orthostatic Tachycardia Syndrome)

  • This is a new diagnosis and you might wonder, why is this filed under the good things of 2017? For almost two years, I have struggled with dizziness and a racing heart when I stand. I tried to ignore it but over these past few months, the dizziness was so bad that I would see black spots, vomit instantly (like in the kitchen sink because I couldn’t make it more than a few feet). My heart rate would be 75 when I was sitting and shoot up to 130 just from standing.
  • Once the symptoms started impacting my quality of life (and scaring my husband), I finally called my PCP who sent me to a cardiologist. The good news is that despite Rheumatoid Arthritis and Type 1 Diabetes, my heart is great! The other good news is that even though my symptoms haven’t improved at all, I now have a name to what I’m fighting (POTS) and have an appointment to see a great specialist in March.
  • Although this condition is incredibly hard to manage, I’m hopeful that I’ll see some improvement in 2018. I also plan to write about my experiences as it’s been hard for me to find a lot of patient advocates/bloggers sharing their stories.

General Wellness

  • In October, I decided to get serious about my overall health. I’m happy to report that as of today, I’m down 28lbs and am starting to feel stronger than ever.
  • Losing weight has helped my sleep and has decreased the amount of pain meds I need to take. Now that I’ve seen results, I’m confident that I can keep going, no matter what comes at me.
  • I’m working on managing my diet as well and that’s a big part of my 2018 plan. All of my recent nausea has had me limit myself to only a few foods that I know won’t make my stomach feel worse. As a result, I’m going to work on slowly adding back in foods and seeing how my body reacts. Something I’ve wanted to do since my RA diagnosis.

I’d love to hear about your plans for 2018 and what you learned from 2017, please share in the comments!