The Past Two Weeks

It has been a difficult past two weeks. Unfortunately I feel like every update post has been described that way of how things are going the last six months. I've learned it's ok to acknowledge the negative to see how far you've come and answered prayers, but it's important to find and focus on the positive as well even during the difficult. Also lists are kinda my thing ;)


Negative - Had some scary new symptoms on Monday.


Positive - My sister called my husband to come home. There's no way I would've gone to the ER if she didn't push me, plus I didn't even have the energy to get out of bed or ability to not be curled up in a ball position.


Negative - My health is so complicated not even my family or husband know the extent of everything I have and I did not have energy to talk at all, let alone explain with my pain.


Positive - Thankfully I had just written this post and C was able to print it off and bring with us.


Negative - No one at the ER knew what any of my diseases were.


Positive - It was an opportunity to spread awareness for their next patients that had it or might have it.


Negative - They weren't able to help me and sent me home.


Positive - Nothing was going to kill me right then and there so that was good to know.


Negative - Morphine didn't even make a dent in the pain.


Positive - At least that did show how bad my pain was and they did give me some pain medicine in the meantime that would last at least and kind of help before I could see my GP.

Negative - My GP wouldn't be able to see me for a couple days. I hadn't been able to eat or drink water because of instant pain so we didn't want to wait.


Positive - The NP was able to get me in that day and had experience with unknown health issues so she was sympathetic and ordered scans immediately (and even called me at home that night at 11 when she was at home).


Negative - Scans didn't show anything.


Positive - Scans didn't show anything, but still no answers to what's causing my pain and how to get relief.


Negative - Cardiologist and Interventional Radiologist in Dallas couldn't do anything to help and what the NP had recommended to do without any other ideas.


Positive - It did get (thanks to my sister-in-law who had to call multiple times while she was on vacation) my Venogram finally scheduled, since come to find out they never sent my referral for it.


Negative - Unfortunately, it's not until October 1st.


Positive - It's given more time to research and be prepared how I want to treat after my Venogram.


Negative - My pain was so bad that I scared my mom and she called her doctor in tears in a desperate plea to help me.


Positive - Her doctor actually knew about EDS and my compressions. 


Negative - My mom's doctor had confirmed I had done all the right things, but there wasn't anything else to really do at the moment besides the Venogram I have scheduled with my Interventional Radiologist. 


Positive - She would get me in for an appointment  in a week and ended up getting me even quicker than we planned.  She actually gave me pain medicine until my Venogram. The first doctor in 6 months who understood my pain and wasn't going to let me suffer.


Negative - Pharmacy was out of that prescription for a week and a half.


Positive - Took a few days, but doctor was finally able to write a different prescription to get it available for me.


Negative - I was in a really bad way and was bedridden. I even had to miss a special event that had been in the works for months.


Positive - My mother and father-in-law were in town for the event so they were able to help out with the girls.


Negative - I have been doing so bad that I haven't been able to really get out of bed, let alone drive anywhere.

Positive - I do finally have my handicapped tags now for when I can thanks to my mom.


Negative - Filling out paperwork for my geneticist and reread over my cardiologist's very extensive last report and noticed another compression diagnosed that I somehow missed. That now makes it the total of 5 compressions that I have (which is the most and all of them I think you can have?)


Positive - I have some great support groups with others fighting these illnesses as well, so I've been able to reach out for advice and realize I am not alone because others are going through this as well.


Negative - I had just got my medicine and finally felt like a human being and that night Willa got a bug, therefore, I got a bug all weekend.


Positive - My sweet girls gave me some pretty precious moments in that discouragement. L would come bring me my cane and help me walk back to my room. W would come pat me and say "Mommy, you will feel better soon, I will take care of you."


Negative - I still have a week left of waiting until my venogram.


Positive - My sister is going with me and my mom is watching the girls so my husband doesn't have to take off since he will need his days when we decide surgery.


Negative - Right now things seem discouraging and overwhelming with all the things wrong and not knowing what is the best thing to do for surgery not to prevent more problems or pain.

Positive - I have been in this situation before and God has never left me or let me down. Look at all that has happened in the last six months in how He continues to constantly show up and give me sweet reminders I need.


I leave you (and remind myself) of a verse I prayed on and repeated over and over while I was on bed rest with my youngest daughter:

Isaiah 43:1-7 "But now, this is what the Lord says - he who created you, Jacob, he who formed you, Israel: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give people in exchange for you, nations in exchange for your life. Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. I will say to the north, ‘Give them up!’ and to the south,‘Do not hold them back.’ Bring my sons from afar and my daughters from  of the ends of the earth— everyone who is called by my name, whom I created for my glory, whom I formed and made.”