Saturday, March 17, 2018

To Date, 2018

I thought I would do an update. Since some days you have to sit with your feet on the dash outside of your Neurologist's office and ponder your blessings. (While you recharge your energy.) 

I have clearly had a rough three months. Life has been crazy since my migraine cycle, Dysautonomia flare ups that started spiraling in November, and when I had to go back to J feeds in February. But last week I started a new Medication similar to Benedryl. (Hydroxyzine). Was I shocked when my nausea was in control, my migraines went away or muted, my full body pain highly lessened, I gained much more energy, & viola I started eating by mouth again!! I saw neurology yesterday. After long thought, it does seem due to Auntonomic Malfunction, my body is storing and not normalizing my body's Mast Cells. (The Body's allergy cells.) Mast cell issues are complex and hard to treat. But we are trailing new mast cell stabilizers in hopes we get the lid back on the POTS. I also am going back to physical therapy to get my wobbly, deconditioned body some strength back. We hope I quit toppling over with some strength. I love my neurologist. He always says "you're not crazy" and he assures me "we can always try things, we aren't out of options unless we quit. And we will keep trying." (If I fight, I know he will fight with me.)  I feel blessed to have a speciality neurologist who takes care of me in this complex form. Yesterday, I realized how much different knowledge he holds. He has to know all these systems and most doctors won't even try at that point. They would say it's out of their specialty. These cluster conditions are is in his specialty due to this being a common problem in POTS patients. But that's what's simply amazing about Dysautonomia specialists, they get the complexities. I won't lie, life has been challenging these past few months. But I look forwards with hope again. Something I realized, was I had quit praying for specifically "to feel good". I would pray for everything else, I'd ask for health. Finally, God made me realize, I hadn't been praying for what I needed, "to feel good again." Almost immediately from this prayer, I started a medicine similar to benedryl, and life improved a lot.  This also pointed to the possible culprit to my vicious three month flare up. I am not fine or in any form of remission.  I have a long ways to go. I can eat by mouth but not nearly enough. My stomach is not cured just because I can eat by mouth as well. It is still paralyzed. I know it seems confusing but GI paralyzation due to ANS Dysfunction, can change its courses drastically. This weekend I have IVIG. I am unsure if it is helping or not. (A discussion Neurology and I had yesterday.) It doesn't seem to be hurting me from what we can tell. These issues started before IVIG and are why I started it. I was slipping in August that's why IVIG was started. IVIG was an option to try. I wouldn't say this treatment is hurting me and we agreed we would keep going. Long term it could be super beneficial. I have noticed it has helped my Sjögren's Syndrome.                          It is Endometriosis awareness month. That being said 1in10 women have this condition. Killer cramps are not normal. If you do not know what this condition, Endometriosis is go look it up! Your knowledge may save someone suffering and misery. If you are a female with POTS we have a 40% chance or higher of developing Endometriosis. (New studies are showing. I'm sure Dysautonomia International's page has these studies.) Endometriosis is also now considered a cluster condition with POTS.  My body knows it's awareness month. (I joke.) I'm looking at another excision surgery as I ended up in the ER due to lack of pain control. It's been another condition that's been severe since November as well.        I will get my MicKey low profile tube next month and I am estatic! Hopefully I will get more nutrition in by mouth and can go back to a Gastric tube. This type of feeding tube doesn't require surgery every few months. God has put some amazing people in my life. Something He has shown me, is there is no better friend than a chronic friend. They don't care about what you have, your status, if your hair looks like crap, or your makeup is on. They only care about your heart and soul. I love the compassion and hearts sick people can hold for one another. The support is endless. I am SO very thankful for my fellow spoonies. I hope I'm as good to my fellow sickies as they are me. I wish the world could all see the values of true importances in life. Just the pure soul of a person, bodies don't matter, just hearts. These walls get removed when you get to a certain sick point. You can see more of what God sees in us all. Our hearts, not our scars, or earthy possessions. We all have potential and work to do here. Don't forget it. Spread the love-Chelle