A POTS Diagnosis

Long day, just now picking up girls from Memaw & Grandpaw's. A really good appointment with a diagnosis of POTS and plan for treatment along with a few others. Unfortunately no update on PCS yet, have a referral to an interventional radiologist. Confirmation though that he is the only one who will see or know what to look for on an MRI & MRV since he would be the one to fix. Adding a few other doctors/specialists to my team so additional referrals for more testing and appointments. I will say it felt really nice to have the cardiologist impressed with the amount of knowledge I had of research and that he actually appreciated it. What didn't feel nice was the tilt table test where I had to quit at 14 minutes because I almost passed out. I guess an increase of 62 bmp in my HR will do that and why my cane has certainly come in handy lately. Thank you for all the prayers!

Opposition

"You said You won't relent

Won't let go, won't forget
Every promise You have whispered to my heart

As I wait, As I wait on You

I'm gonna run and not grow weary
I'm gonna walk and not grow faint
Rise up on wings like eagles
To soar

I know with everything you're with me
I know you're working as I wait
Lift me up on wings like eagles
To soar"

Opposition. It was the theme for sermon last Sunday and oh man, did I need it. Opposition that week looked like:

-Constant pain level 9-11
-Abdominal/Pelvis MRD results with no findings
-Discouraging pain specialist appointment
-Not knowing how I'm going to go another week in pain before cardiologist appointment

The sermon talked about when opposition usually occurs. Usually right before a breakthrough or something big is about to happen. It's not God putting the opposition in our way or throwing it at us. We have to remember that and we have to stay strong. Fortunately even after all the opposition I faced that week, I know because God has put it on my heart, we have figured out what's wrong. Something big is coming and you better believe I know God is lifting me up on wings like eagles to soar.

Dear Doctor

     There's a reason chronic illness patients have PTSD. It's from experiences like with you. The doctor doesn't read their chart or know their history and what they've been through. You don't know what it took for that patient to just make it to the appointment, let alone keep it together while they are there. Long waits (an hour and a half specifically that time) sitting in an uncomfortable chair in pain. Trying all different positions in the doctor's office while waiting longer trying not to cry or scream in pain. How can you not notice this when you walk in?


Not asking me any questions or cutting me off when I try to explain because you misunderstood important details that make a difference in my treatment. Telling me nothing will fix me, but I'm only going to get worse and worse. That we don't want to go down that path of giving me medicine for relief when you have no idea what my path has been. Belittling my PT and Cardiologist of what they have diagnosed me with and what is causing my problems.


Prescribing me a medicine that I filled out pages and pages of paperwork the first visit, reiterated at each appointment that I have tried multiple medicines and treatments and what has given relief and what hasn't, and that I'm on the verge of ER every day. How much it took to hang in there for a month until this next appointment. Only to be told you could possibly give me an injection after my cardiologist appointment and then handed me a prescription for Tylenol and you would see me again in two weeks. That's when I couldn't hold it together and started bawling. So you tell me to try taking the Tylenol for two weeks and call them. You DON'T get it. Do you know how many times I've tried Tylenol? NO RELIEF. I told them I will not fill the prescription. They walk me out and I get to make my next appointment.


What for? This is what makes C so infuriated. When the appointment is a complete waste of time. This isn't what made it worse. What made it worse is that driving home I got a call from a nurse who said the doctor looked over my chart and he would give me two weeks of the Tylenol instead of one. Again, I told her I would not fill the prescription. Monday comes around and I get a call from the receptionist that the pharmacy said I did not fill my prescription. Again, I told them I would not fill the prescription with her response that I needed to come give the prescription back then.


Something my counselor told me after my experience with my neurologist (telling me I was just having pain because I'm depressed from having a c section) is that the doctors work for me, I don't work for them. If you are going to not believe my pain, learn about my rare diseases, or try to help me, you are not worth my time or energy. You WILL BE FIRED. Total validation is when I go to a doctor who gets it, I mean gets it, listens, asks questions, wants to know my goals, understands my rare diseases (and if they don't know, they find out or learn or tell you they know don't know, but does not downplay what you are going through) and that doctor asks what the previous doctor did or if they did such and such, but gets furious that none of that was done. That I had to go all that time without being believed, listened to, or helped when it's not all in my head.


I know if this has happened to you, it makes you want to give up. Not even try to go to anymore doctors or appointments. I was upset that this appointment happened after I felt like I was really making progress with my whole team, but I was more angry because I know this happens to so many and it's discouraging. I have white coat syndrome for a reason. Sure, I understand you may have addicts trying to just get pills or need to be explained what's wrong with them, but if you come across a patient who is knowledgeable and knows their health issues, don't see it as being threatened or a negative thing, but please see it as an opportunity to learn and figure it out with them so that you may be able to help so many other people down the road.


I'm not going to let that appointment or you, doctor, stop me. You are just fueling my passion and purpose showing me why I need to write about this, share about this, educate others and doctors who don't know about EDS, POTS, MCAD, or PCS and spread awareness. Because if we make an appointment, we are reaching out and trying to be proactive in getting and feeling better so that we can live life to the fullest.

A Talk with Keke

 

I had just written the Why Me post in the waiting room before my echocardiogram. Do you ever have an immediate connection with a human being? This happened with the tech named Keke doing my test. She has been working for my cardiologist for 12 years and that was definitely more confirmation of what an awesome doctor he is. She started asking me questions about my health and what I've been going through and within those 12 years you better believe how many similar situations she's seen to mine.


She's met patients that have gone years in pain with multiple symptoms who get tossed to doctor after doctor not believed there's anything wrong or that it's all in their head. They look young and healthy and they better not smile at an appointment or no way will a doctor think they are really hurting. Patients that will be turned down for medications because they must be drug seekers and just want to be on pain killers not really needing them. Patients that don't have support from family or friends because they don't believe there's anything wrong or all in their head. Patients that start to question themselves after that if there's actually anything wrong or all in their head because no one else does and they've gone so long in pain they start to become depressed.


To hear Keke say "these doctors even try to give their patients Tylenol to give them pain relief, are you kidding me?!" They are in excruciating, debilitating pain and it's laughable and offensive the way they treat EDS patients.


I shared with her all the reasons for why me and how God is working in my life including the way she blessed me that day. It's comforting knowing you aren't the only one that has gone through experiences like the one above, but at the same time your heart aches for the ones who give up. They stop looking for answers and fighting.

Overdoing It

The exhaustion and pain from a chronic illness can be hard to explain to others, but the spoon theory has been the best description that breaks it down. I definitely feel awkward trying to tell someone about it usually when they ask to do something. I have multiples friends and families where it happens to be 3-5 times in a row that we can't make plans or have to cancel right before. It is very frustrating to cancel plans, especially when being dependable, prompt, and always having a plan were something I used to pride myself on. Now, as much as try to control my spoons or strategize, other factors always affect how many or how little I have left. My goal since my health has declined is to make sure our girls are the ones who get the most of my spoons.


Also another thing that brings on guilt for me is that people don't realize communicating is something that takes a lot of energy and can be very difficult with constant fatigue and brain fog. This article hit home about not being able to talk to people when in chronic pain. It is embarrassing that this happens and what's worse is that in the moment, I can't find words or know what or how to say what's going on. It definitely causes anxiety knowing when I'll be around a lot of people. You wouldn't think it would be, but the most difficult question is when someone asks what have you been up to. I start trying to remember yesterday, or the past week and it's like my brain goes blank. I know we've been doing activities with the girls and keeping busy, but for the life of me as soon as someone asks, I can't tell you anything and then I feel even more guilty what they must think how I raise the girls.

When I am out and about doing something or with friends and family or a special occasion, I have a tendency to push my limits just to enjoy that time as much as I can, but then pay for it later. Pay for it not just the rest of the day, or next day, but often the next whole week. I'm still struggling with boundaries of that and honestly it happened this weekend at my nephew's birthday party when thankfully my husband had to pull me aside and remind me that my family will understand I'm hurting and if I keep going, I won't be able to help him with the girls and we have so many things we need to get done.


So what do I do after I have overdone it? I try stay horizontal as much as possible (not easy to do when husband isn't with me) since we have two small children. I do have to brag on my oldest. She really does help and has with her younger sister since she was born - throwing stuff away, getting something, turning something on, etc.) Besides having to lay down I'm also connected to a heating pad and wearing my compression socks, which I am currently doing at the moment.

For the spoonies out there what is something that you do if you've overdone it?

Who Would've Thought

Finally! A doctor who not only knows what Ehlers-Danlos Syndrome is, but understands it and its effects, and has done multiple studies on the connection between it, Postural Orthostatic Tachycardia Syndrome, and Pelvic Vein Congestion. A month ago I had my 1st appointment with my cardiologist and it is such a God thing how I felt like this appointment would be the least big deal of all I've had and not even sure if I really needed it, but it ended up being the biggest piece to my puzzle. I was waiting to share about him until I got the much anticipated report from that first appointment. It was six pages long with data and research to back up every test he ordered and what he think could be wrong or causing all my symptoms.

It's been a very difficult last two weeks trying to make it to this follow up, but the time is almost here. Tomorrow is the day. C will be going with me. I'm so thankful that my sister-in-law (who went with me to my first appointment) made sure he did because there was so much information and it always helps to have another ear, but also another person to reiterate if needed. Here's all the tests I've had this month along with an Abdomen & Pelvis MRV that we will get results for. Last week I checked the patient portal and they already updated that I have a nerve compression and chronic venous insufficiency, which are answers!

Who would've thought a Cardiologist would be the one to figure out my pelvic pain?