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 for reading

Ray

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

Diagnosis update

So, my diagnosis of mastocytosis has been changed to mast cell activation syndrome or MCAS. My mast cell markers were considered normal so that is what my doctor has said. It makes a lot of sense because this condition often comes along with all of the other conditions that I currently have. Just thought I would update all of you on this. I hope everyone has a great day, and sorry I haven’t written here in a while .
Ray

Bronchitis almost killed me!

Hello everyone,
So we were recently hospitalized because of a port infection that was caused by bronchitis. We went to the emergency room three times before any testing was done. Every time I would run my fluids, I would get a fever of 103. We knew this was not normal, but the doctors would not listen. They said we had bronchitis and possible chronic obstructive pulmonary disease although the last part of that was not shared. I saw it on the x-ray report. We were hospitalized on May 25 and released on June 3. We were put on a broad-spectrum antibiotic and eventually the port had to be removed because we spiked a fever during the night. The port was replaced a few days later with a Heckman power line. I like it because it is purple and the kids love that too. The line flushes beautifully and we are happy that there are no needle sticks every week now. For a while, we didn’t have the medication to treat our postural orthostatic tachycardia syndrome because at first they did not allow us to use home medication’s. We were eventually finally able to get the medication with a pharmacy exemption. We had a Dexcom sensor as you all know, but that one expired, so the endocrinologist ordered the freestyle libre system. We are now using that, and hoping that because we pay for it ourselves, it can be used as an exemption to maybe lower the cost of rent, but not sure. We can’t get in for a pulmonary function test until 2 August. We were sent home with nebulizer breathing treatments as needed. It’s just scary to think that bronchitis could’ve killed me. They found two bacteria in the port and both of them are found in people who have pneumonia or other lung infection issues. The lungs are one of the least studied organs in patients with EDS. We went home on IV anabiotic’s which we finished yesterday. Thank you all for being loyal and continuing to read our blog. Much love to you all,
Ray et al

update on us

Hello everyone. We are doing ok. We are doing ok with our POTS and gastroparesis, we are in pain a lot from our EDS, but that is to be expected. Hope all of you are well.

Ray

Wishing my body would just work

Sometimes, i wish my body just worked like normal. Sometimes, I wish I didn’t need these tubes and lines, but I do. Sometimes, I wish I could just go to the fridge and get something to eat or get something to drink and didn’t have to spend 15 minutes just hooking up the IV hydration that I need. This is how my body works now, and I have to accept that. This will be my life for the foreseeable future. Thanks for listening to my rambles.

Ray

medical updates

Hello everyone, we still have the Dexcom. We at least have it for now as a trial. It is working quite well. We found out that we are prediabetic with an A1cHello everyone, we still have the Dexcom. We at least have it for now as a trial. It is working quite well. We found out that we are prediabetic with an A1c of 5.8. This is hard because the foods that we can eat orally are not diabetic friendly. Just though we would do an update. Hope all are as well as can be.

Ray