raykay23
The Many Parts Of Me
Hi, I have borderline personality disorder, major depressive disorder, post traumtic stress disorder, an eating disorder and dissociative identity disorder.
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Out of the hospital again
Just got out of the hospital because we had to get our gallbladder removed because the Tpn was causing issues with it which was almost causing our liver to fail. We had to get a stent in the main pancreatic duct and the main bile duct because the main bile duct had stenosis, which means it was narrowing, and if they had not put the stent in, we could’ve gotten Collin Gytis, which could’ve killed…
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Temu promo!!!
Here is my affiliate link for Temu. You can win great weards when oyou use my referral link!!! Temu has millions of items for affordable prices.
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Ray
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issues with Suboxone
We started taking Suboxone on Tuesday, and we now have swelling in our legs and ankles. We thought it was the fluids or the TPN, but no, it’s the Suboxone. This is frustrating. We are not sure what to do. We are not even sure if the med will continue to be prescribed because our PCP is n’t willing to prescribe it. I’m just at a loss.
Ray
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updates from us regarding medical treatments and pain
This is mostly going to be a medical update. We had a doctors appointment on Tuesday where our primary care doctor told us that we obsess too much over our conditions, and that if she had it her way, none of her patients would be on pain medication. My palliative care team was trying to get me on Suboxone for pain. It will be a film that goes on the inside of the cheek and absorbs through the…
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disability pride month
Disability pride month means a lot to me as a person who has multiple disabilities and chronic health conditions. I am glad I have the resources. I do that help me cope with my multiple chronic illnesses and help me to live a more fulfilling life. I also love the resources that allow me to be productive in society as much as I can be. Happy disability pride month. Ray.Disability pride month means…
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pointless urology appointment
Well, we had our urology appointment today, and it was completely and utterly pointless! I wasted four dollars on transportation to get to this appointment. The nurse practitioner didn’t even know why we were there. We were under the impression that it was to discuss the super pubic catheter. She didn’t even examine us or anything. It was a seven minute appointment. We see the urologist next…
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updates from here and the medical saga continues
Hello everyone,
So tomorrow we see urology to discuss getting the surgical catheter placed as of urinary attention. Speaking of urinary retention, the other day we had to go to the ER because our Foley catheter wasn’t draining. We called our normal nurse, but didn’t realize it was her day off. We then called the after hours home health nurse, and the on-call nurse didn’t answer her phone twice.…
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Might be getting a FO's
Hey, so we have some good news. We might be getting AFOs or ankle and foot orthotics. We can use them when we do walk to make our ankles more stable and therefore hopefully able to make the rest of the joints up from there is stable as well. We had physical therapy come to our house yesterday, and she’s going to try to see what she can do we are also going to see if I can get ring splints for my…
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don't like hospitals
I hate hospitals. they are not my favorite at all. I wish we didnt need them. we hat that our body is sock. I wish we could just get better at home. I hate that we are on TPN, but Im glad it is an option to give us nutrition.Â
Melissa
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going home today
So, we are going home today. We tried to ask for a urology consult, but they denied it even though the urologists we would see here are the same ones we would see as an outpatient. They also used chlorhexadine to clean our site when they put in the line, and we are alergic to it. They won’t change the dressing. We are so itchy and miserable.Â
It turns out that the infection that caused us to go…
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#alergy#chronic illness#EDS#Gastro paresis#hospital#mast cell activation syndrome#MCAS#medicalgaslighting
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new line so far
So, I have the new Hickman catheter. It is very very long, but I am getting used to it. Not looking forward to sitting or standing up for the first time, because my skin will pull where the line was inserted. The line flushes, beautifully, and everything’s runs through as it should. Blood returns great as well. I love when things work out, but this is my 10th central line. Central lines, do you…
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new line
So, we have the new central line. It is so much longer than the last one. It is a Hickman catheter with a red lumen, and a white lumen. Glad to have the new line, but the lidocaine is wearing off. Hope all is well. Ray.So, we have the new central line. It is so much longer than the last one. It is a Hickman catheter with a red lumen, and a white lumen. Glad to have the new line, but the lidocaine…
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long overdue update
Hello everyone,
So, it’s been a while since we’ve done an update to this blog. We are currently in the hospital with a central line infection and a UTI. We came in last Sunday to the ER, and they told us we were fine, so we went home. I saw my bloodwork and all was not fine. Our white blood cells were crashing and the platelets were dropping too. They just sent us home with an oral antibiotic and…
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#central line#chronic illness#chronically ill#EDS#gastroparesis#hospital#total parenteral nutrition#TPN
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Benadryl shortage and Christmas fun
Benadryl shortage and Christmas fun
Hello everyone,
Se apparently, there is a Benadryl shortage of injectable and IV benadryl. We haven’t had it now for a few days, and we can tell a difference because of having more reactions to stuff. It really stinks. Hopefully, we can get it tomorrow from CVS. Our doctor changed the script so we can get it in the pre-filled syringes so the nurse doesn’t have to draw it up for us. Our insurance…
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have a cold
So, I have a cold. Having other chronic illnesses on top of that makes it very hard to get over a simple cold. Because of immune dysregulation, it isn’t good for me to get sick with anything. I hope things get better. I’m dealing with a sore throat mostly and a slight fever. It’s like 99 right now. Hope all is well with everyone else.
Ray
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a sleepy kind of day
a sleepy kind of day
So, it’s been a sleepy kind of day. Right now, I’m waiting for my current bag of TPN to finish so I can start my next one. I’m trying to get a CGM covered by my insurance for my hypoglycemia unawareness and the fact that i have to use insulin in my TPN or my blood sugar will go to high.
My blood sugar issues are caused by my MCAS and dysautonomia.
So, that’s the little update for tonight. Thanks…
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#dysautonomia#hypoglycemia#IV nutrition#mast cell activation disorder#mast cell activation syndrome#mast cell disease#MCAS#sleep#TPN
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updates
It’s been a long time since we have updated this blog. We are still here. We are still on TPN. I have IV Benadryl for the MCAS as well as Cromolyn. We are still here and we are still fighting!
Ray
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