Translate

7/17/2019

Pelvic Congestion Syndrome


My prayer warriors, we feel like we are so close! Not a definite diagnosis yet, but multiple experts believing we have an answer on what's causing my chronic pelvic pain, just need that final imaging and final doctor to say yep. We knew it was EDS, but it's even more specific than that and what other problems it could also be causing like POTS. I had my pelvis MRI scan last week, but report came back normal. It's good news that it didn't show anything else that would be causing my pain and is more evidence it could be Pelvic Congestion Syndrome (PCS).

I know most of these rare diseases I haven't even heard of so if PCS is new to you, this is the best article to explain what it is, how to get diagnosed, and how to treat. We are hoping for the diagnosis because a small minimally invasive surgery can be done to help the problem and a lot of people become pain free. The video above is actually the doctor who would be that final doctor and is an interventional radiologist. This was him at an EDS meeting with my cardiologist talking about what his patients have usually gone through before they finally get to him. It has been so rewarding for him to actually listen to them, believe their pain, and fix it.


If you have Amazon Prime, please watch Episode 3 "HYSTERical" of Without a Scalpel

You Are Going to Have Tough Days


I know I have written a lot of positive posts lately, but the reality is there are definitely difficult days and times too. This weekend and week has been one of them. I don't want to sugar coat it and not be honest about that. What I've noticed though is that if you allow yourself to have those crying sessions, overwhelmed feelings, and discouraged attitude, it can actually make you wake up the next morning (or few mornings when we sometimes need longer) with a new sense of purpose and perspective.


Recovering from testing that increase symptoms and an extra long drive back from Dallas because of rain, traffic, and accidents, got vertigo this weekend on top of my normal issues, had increased pain from a new treatment the urologist recommended, C had so much to do as well, and it was an all around tough couple days parenting. Today brought outlook that I needed.

This is what I texted the husband:
"You know I'm so sad it's taken so long to figure so much out, but in reality, all of what we are learning is such new stuff it's only like being researched and investigated like as I go through it. As much as I valued doctors in Charlotte and wish we had doctors here, like seriously out of the country and world, Texas (Dallas) is the best place and options for EDS, POTS, & PCS. And I couldn't have been more fortunate to have a PT (and another PT as a friend) who know their EDS, POTS, and PCS. My PT had just stumbled upon an article to back up everything we've found with me and to create a path for future patients and all the pelvic courses she teaches around the country. She said it's difficult trying to treat someone and support what she's doing without the research/evidence to back it up, and now it's finally there with the experience she's had with me."

The girls had been pushing boundaries and I ended up having to put them to bed early Sunday night because they just weren't listening. The next morning, the first thing W said when I went in their room was apologizing for not listening. We had a completely different day than the two before, and L even took an extra long nap to give me time to rest.


When I'm having an especially hard day, I know I do, but I think we put more pressure on ourselves that we need to be in a good mood and grateful. Instead, I'm going to allow myself to not be strong all the time and not have to wear a smile constantly. I'm accepting I'm going to have tough days. I'm also going to try to be better at understanding and supporting others when they have tough days.


If you liked any of the pictures you can find more  here

7/14/2019

When Doubt Keeps Creeping In

Psalm 94:19


Having a counselor is just having an encourager, cheerleader, & advice giver. I hope one day we can stop the stigma for mental health and as scary as it is to share that I go to a counselor, if it helps someone get the assurance to go, than it's worth it.


Last appointment with him, I went in so excited about everything in the works with my health, but I had a lot of doubt creeping in. I'm thankful I had the guts to bring up what I was struggling with because God knew I just needed reassurance.


The questions I was asking myself:
*Should I even share about all this boring health stuff
*No one wants to hear about me, I shouldn't be talking all about myself
*Should I go to all these appointments and even try to figure out what's wrong
*Should I even be researching everything and looking up on my own
*Should I just trust the doctors


What I needed to hear & a reminder:
*People that love you do want to know
*I'm educating others by sharing and educating even my doctors
*If I don't share, someone else may go undiagnosed without learning about it
*It can help someone else not feel alone in their journey
*If I don't try to find answers, I'll never be able to help myself and make the most out of my life


Since that day you know what has happened? Confirmation after confirmation to let those doubts creep back out.
So it's ok when I have doubts about writing, feeling unworthy. God has put little reminders including people to show and tell me He's using ME. 


And so if you are reading this and having doubts creep in, I'm here to be your friendly reminder to have that confidence because he's using YOU.

Reading This Article



This article. I couldn't stop the tears from falling down my face as I read it. So familiar.


I was going to make a list of all the similarities of every detail to the wife's story with my story from the two pregnancies to the driving in a car, but it'd be just word for word. Like my husband could've wrote an identical article, but I'm hoping to change the ending. I've already had in the last week a doctor who believed me and could give me answers, which unfortunately she wasn't able to get.


That's why it's so important we share her story, journey, struggles so we can bring awareness. That doctors will listen and be able to recognize EDS, or someone hears, reads, or learns about EDS and is able to tell a family member or friend I think you should look into this because it could explain what you are going through.


The thought about EDS is that it is currently rare because it doesn't get diagnosed correctly and the numbers would drastically increase.

7/11/2019

Why Me?


  "When you see a field of dandelions you can either see a hundred weeds or a hundred wishes."


Why me? Well, why not me? Why would it need to be someone else instead of me?


You know what, yes me, because:

-I have a loving, supportive, understanding husband
-I live close to family and have childcare options
-I have insurance
-I have a church family
-I have a strong relationship with God
-I've been through trials before where God has been there and showed us time and time again how He works
-I'm extremely determined
-I'm proactive (I can't just sit back and let something happen - definitely a doer)
-I have an exercise science background and interest
-I know how to research, find answers, and figure out a solution (or make a plan to how I'm going to find a solution)
-I have family members who've experienced, dealt, and lived with chronic pain


I understand there are so many reasons why I won't ever understand and only for God to know why me, but just like other experiences and situations, only time may show why.


I also had a revelation recently that unfortunately our girls may have some or all of my health issues. You know what I can give them? Answers. A path. A role model to show them how to handle what's thrown at you in life and not give up. 


I have to add the last thing for why me. Hard to type these words because I'm so overwhelmed with gratefulness. Why me because I have a mother who through all my weird, unexplainable health issues, she never once didn't believe me, not support me, not go with me, not research for me, not advocate for me and at the same time prayed for me, took care of me, nurtured me after surgeries or sickness, cried with me, massaged me, and constantly worried about me. I love you mom and I can't wait to celebrate with you when we finally get those answers we've longed for, for so many years.

How far I've Come



If I had to draw a map of my health journey so far it'd look like this:

GP -> Gastroenterologist -> Gynecologist -> Rheumatologist -> Dermatologist -> Allergist -> Neurologist -> PT -> Counselor -> Urologist -> Cardiologist


If I had to write out a timeline of my health journey so far, I'll keep it to just since last summer, it'd look like this:

June 2018 - Pain was so severe I had a robotic laparoscopic hysterectomy leaving my ovaries (4 months after my hospital bed rest and emergency c section).

Fall 2018 - My cramping went away, but other symptoms started increasing and were getting debilitating. In November my aunt finally encouraged me to make an appointment with a rheumatologist or autoimmune specialist because it can take so long to get one and I could always cancel if I didn't need it.

January 2019 - Finally investigated what doctors are in my area and who I could go to. I got a referral to rheumatologist here, but never heard from them or received any calls back.

February 2019 - Sister in law finally got through and found out they weren't taking new patients, but never let my OBGYN know or let me know. My cramping pain returned. Called and made appointment for Dallas rheumatologist (thanks to sister in law referral from her job), but it'd be another 2 month wait while I was hurting.

March 2018 - Went to GP to see what he could do or about trying any medicine for the pain while I wait. He referred me to a pain specialist because he was unable to help or prescribe anything. Unfortunately the pain specialist were too full with patients they couldn't tell me when they'd be able to get in.

April 19th - Dallas Rheumatologist (EDS diagnosis)

April 25th - GP here

May 3rd - Dallas Rheumatologist

May 14th - Dallas Dermatologist

May 16th - Dallas Allergist

May 22nd - Dallas Neurologist

May 23rd - PT here

May 28th - Counselor here

May 28th - PT here

May 30th - GP here

May 31st - Dallas Allergist, MRI Scan

June 5th - Neurologist

June 7th - PT here

June 17th - Dallas Pain Specialist

June 18th - Counselor here

June 19th - PT here

June 24 - PT here

June 25th - Pain specialist here

June 25th - PT here

July 2nd - Counselor here

July 3rd - Dallas Urologist

July 5th - Dallas Cardiologist

July 8th - PT here



Even bad doctors or experiences led to things in my path and gave me direction. Little did I know when I first sought out a rheumatologist, that for EDS especially, you don't just need one doctor or specialist, but a whole team. There's so much affected and it encompasses multi-systems. Because there isn't a cure, treatment of symptoms is the best course of action for overcoming chronic pain.


So if you are just starting out on figuring out some health issues, even if you have had the issues for years and years or since you were a child, don't lose hope. Every symptom, misdiagnosis, pain, medicine, appointment, surgery is a piece to the puzzle. Your puzzle. And there is a doctor (or doctors if you have EDS) that are willing to help put those pieces together to make you whole.

7/09/2019

Just a Few More Tests


Wearing the monitor to record my palpitations, chest pain, dizziness, & lightheadedness


My cardiologist appointment Friday went very well. I will eventually go into more detail, but will say he was the most knowledgeable doctor I've met thus far on EDS. It was VALIDATING.


This month will consist of a lot more testing before getting updates or answers -
  • Last Friday: Ansar & Arterial/Venous/Carotid/Thoracic Outlet Study (Dallas)
  • Over Weekend: 24 Hour Holter Monitor & 30 Day Loop Recorder Monitor
  • Today: Pelvis MRI Scan
  • Tomorrow: Q-Sweat, VNG, Balance, & Echo (Dallas)
  • This Weekend: 3 Day Voiding Diary
  • July 19th: EEG/NCV & 4 Hour Gastric (Dallas)
  • July 23rd: Celiac Artery, MST-Bike Test, & Sleep Study (Dallas)
  • August 5: SIBO, Tilt cTCD, cPCO2, cBioZ, & Stress Echo - Treadmill Test (Dallas)



August 5th is follow up with the cardiologist to go over all the results.

7/01/2019

Health Update 7/1/2019

It feels like I'm always waiting to update people until we have definite answers because this whole process is just a lot of waiting, mixed with more doctors, new appointments, or different tests. I realized today no matter what it is, it is still an update and part of the journey figuring it out. So again I am still waiting, but I guess I can fill you in on what has happened lately and what's next and at least document it for myself for later. You can read the previous update here.

  • Got report from MRI scans the nuerologist had done and they weren't as pristine as she told me. I actually have shallow disc protrusion with an associated annular fissure on the lumbar spine. It said I also have tiny facet joint spurs at the lower level, but now my PT believes the radiologist actually misdiagnosed those for huge bone growths that are fused to my pelvis and spine at L4 to give me no mobility. 
  • Waiting for more MRIs to be done including the pelvis after what the pain specialist ^^ (above) here found when he was about to attempt a nerve block. Hopefully I hear about getting those scheduled this week.
  • I was able to take the genetic test for Ehlers Danlos, including vascular that we were worried about, and it came back negative! It still means I have the hypermobility type, but there isn't a genetic code for it and we wanted to make sure I didn't have more than one type.
  • The Dallas pain specialist tried something that didn't give relief, but she did refer me to a urologist, which may be the biggest piece to my puzzle. Possible pelvic pain congestion or interstitial cystitis.
  • I have that appt in Dallas this week along with cardiologist appointment in Dallas.
  • Thankfully I was able to get into the pain specialist here finally after having an especially difficult week/weekend. C went with me and although the pain relief plan didn't workout like we were expecting, we got some more answers and I got some pain medicine in the mean time as we go down a more focused path.
  • Over the weekend I had to do the super fun 2 - 24 hour urine samples and blood test for mast cell activation syndrome. I am very ready to be done with that in the next few hours and turn in.

You're Gonna Be Ok


In this post I shared a bunch of songs.  On the long drive to my last appointment and back there was just this one that I probably repeated over and over for at least 15 times. Anyone else do that? I think I have found my theme song for this time and situation in my life right now.

I know it's all you've got to just, be strong
And it's a fight just to keep it together, together
I know you think, that you are too far gone
But hope is never lost
Hope is never lost
Hold on, don't let go
Hold on, don't let go
Just take, one step, closer
Put one foot in front of the other
You'll, get through this
Just follow the light in the darkness
You're gonna be ok
I know your heart is heavy from those nights
Just remember that you're a fighter, a fighter
You never know just what tomorrow holds
And you're stronger than you know
Stronger than you know
Hold on, don't let go
Hold on, don't let go
Just take, one step, closer
Put one foot in front of the other
You'll, get through this
Just follow the light in the darkness
You're gonna be ok
One step, closer
Put one foot in front of the other
You'll, get through this
Just follow the light in the darkness
You're gonna be ok
When the night, is closing in
Don't give up and don't give in
This won't last, it's not the end, it's not the end
You're gonna be ok
When the night, is closing in
Don't give up and don't give in
This won't last, it's not the end, it's not the end
You're gonna be ok



If you could pick a theme song for your life currently what would it be?