Dec 26 2019

Hey friends & family! 

so I've officially laid down the scissors. I was really hoping to get my cards made this year but for some reason the holidays ended up slowing me down rather than giving me that encouragement I needed. I was really hoping to get cards out to everyone to let you all know how much I appreciate your prayers, support, help, encouragement, etc. I definitely want you all know that it made a difference knowing there were people checking in on me & praying for me. 

However fight after fight after fight neverending can really weigh you down. Winters are tough in the first place, but throw in all new devices & symptoms I'm dealing with, as well as the endless battles with some medical group or another just to get the quality of care anyone deserves; all of energy has been refocused on the problems rather than the enjoyable part of the holidays.

I promise I'm ok; just super exhausted & over it all. 

Happy holidays everyone 😁🎄 thank you all so so much for your support! Even if you don't realize it, the smallest gesture can be the push someone needs to keep fighting (I had a lot of those sent my way throughout everything).

I will give a medical update later, after the holidays are over & I've hopefully resolved a few more things. 

Have a great new year ❤

Nov 27 2019

Thanks everyone for the birthday wishes! That's so kind ❤ I'm busy attempting my Christmas cards this year, so I'm not going to be around much.

Nov 14 2019

So I know I haven't been consistently updating (I've been dealing with a lot of medical housekeeping). I thought I'd fill everyone in on what's going on.

I was in limbo for a good while with home health agencies because no one wanted to make special accommodations due to my reactions. That meant I had a few weeks here and there without my infusions. 2 weeks ago, I finally got a company who was willing to take me & I found a way to get the special items I needed. 

Well jump to today. My weight is up; I've gained 40ish lbs. My doc now thinks I should take a break from the infusion. I'm still collecting fluid below my incision but at least it's not coming out of my skin & am getting significant pain in the area. I'm getting severe abdominal pain & have hives around my port site. Stopping the infusion may get rid of the hives associated with the infusions, but it will also bring back the hives I have everywhere else. So either way something loses. It will also make it difficult for me to eat again.

I have been trying weekly to get in with a specialist but I never receive a call back. I'm trying really hard to stay afloat. I'm blaming the sudden change in weather.

I do have a positive update to note: I've been approved for disability! I guess my crappy year in & out of hospitals helped them understand how serious my conditions are.

Hopefully everything is a bit easier now!

Today is mast cell awareness day.

Along with multiple other conditions, I am plagued with mast cell disease & mastocytosis enterocolitis. Mast cell is when there is an overabundance of histamines in your body which creates allergic reactions to triggers. These triggers can be random & appear @ any time, or they can be specific. Common triggers for mast cell patients are fragrances & smells that come from perfumes, laundry detergents & softeners, air fresheners, lotions, cleaning products, & toiletries. If a trigger is determined, i have to do all I can to avoid it. The reason is because of the reactions that I may have. Reactions can be as small & flushing, nausea, & hay fever type responses, and escalate to be as severe as anaphylaxis. Every time I'm exposed to something I react to, my reactions get worse. So I risk the chance of having a severe reaction with each exposure. This also happens with products I use & tolerate. I alternate between items so that I don't eventually develop a reaction to the very few list of things I don't react to. I also have mastocytosis enterocolitis, which is basically my entire gi system's response to things it cant tolerate. My gastroparesis, dumping syndrome, & pots are often triggered by my mast cell. 

So if you read through everything, you can understand why I am so particular about the things that I come in contact. Those of us with mast cell live in a constant state of fear, not knowing of what we've touched, inhaled, or eaten could send us to the er. 

Treatment for this is not as easy a you would think. People tolerate them in different ways. My mast cell is not as typical as others, so I've been through 4 specialists who were not able or didn't want to treat me. Me & my team of doctors are pleading with another one to take me in. 

Mast cell is the reason I take so many antihistamines & allergy related meds. Mast cell is the reason I have a port; for iv benadryl & fluids because it was triggered by the surgeries. Mast cell is the reason I'm covered in hives, blisters, & scabs. 

This condition is not one that is easy to bear but I'm doing my best taking it one day @ a time

Oct 18 2019

So small victory & definitely not the answer, but I was able to get my gastro doc to rx me port access @ a center. So I'm now able to infuse on my own for a week! Hopefully we will have things figured out by then 😉🤞

Oct 11 2019

Well it's been a week & unfortunately I'm still where I started. Not officially with an agency, no nurse, & no port access. My doctor's office feels it's a risk for me to access on my own.

So I'm @ the er getting it accessed for a heparin lock until something is done. That way at least I don't get a clot 🤷‍♀️

Oct 7 2019

So apparently in NC home health agencies that are usually run by a specialty pharmacy, do not carry the supplies needed for someone like me, I guess because I'm special & rare 😉 as of now & the foreseeable future, I'm not expecting to be doing any more of my infusions. Every place has said what I require is not in their formulary. Some have been polite; others not so much & have been reported 🙄. I will have to go at least once more to get a heparin flush so I don't develop a clot. In my mind the only option left is finding a way to do this on my own & find a supplier or multiple suppliers to send what I need. But that is thinking ahead. I'm just going to ride it out & take it one day @ a time. 

These infusion were significantly helpful. I wasn't having as many dizzy spells & my torturous colon & mast cell were not causing my stomach as much of a problem.  

I haven't received fluids since last mon; so the reality is that it just might not happen. 

I will update if my advocate finally gets somewhere

Oct 4

Hey everyone. So I wanted to catch you all up with what's happening right now.

I started getting home infusions: 1 bag of saline 3 times a week and benadryl twice a day. 

Because of my skin reactions due to mast cell, I was in need of at least 2 dressings I could alternate between to prevent developing a reaction to the ones I tolerate. 

Well that has been a big struggle. My first company could not provide it; it wasn't in their formulary (even though other people have said they've gotten it). 

My 2nd company I called ahead to confirm. Do you carry microneedles ✔ do you have silicone dressings ✔ I'm using a pump can you get me one ✔ I want to keep my nurse ✔

When my supplies can microneedles ❌ pump❌ silicone dressing ❌ nurse ✔

I spoke with them & they sounded like they were doing their best to get what I needed. I will say they did provide preservative free benadryl, which was a plus

 

I contacted them & explained the need for a pump as well as the needles & dressings & they sent me a list of what needles they supply (nothing micro) & said they'd have to get approval on the dressings. So the next day a pump came (with a powercord bc you're expected to be stationary for 4hrs 🙄) & a variety of needles. That night my wonderful nurse came & attempted the needles that were provided. I say attempted bc she tried 4xs & wasn't able to correctly attach them. 

So another email is sent. We need another needle option & would appreciate batteries because my stomach is unreliable. Next day reply was an explanation for the needles. I did get batteries. 

This is where it gets interesting, if you're still following. Not long after I get a call from a supervisor who has been away until today(?) & sees what's happening. My multiple deliveries just can't happen. They wont provide the dressings or needles. & they dont see the need for my nurse (this is all today). Another nurse from the company they don't approve of came by to access me (she's been around long enough that they refer to her as the pro). She did get it need in but as she was driving away I could see the needle poking above the skin (a big nono & evidence that those needles are a struggle). I call the regional supervisor & explain things & of course it's we'll get back to you. Then my nursing agency calls saying I've been discharged from their care (absolutely illegal). I call the supervisor back & get the same answer. And 5 hrs later he responds with the same answer everyone else gives but says we have another nurse for you. But I've been waiting 5 hrs with a needle poking out of my skin that could have been infected or bumped 😒. 

I do the only other thing I can think of call insurance. They put me in touch with a rep of the home agencies & I eventually end up with an advocate. The advocate says I need to go get my port deaccessed at the er bc it would be a liability if I did it. So my wonderful driver took me to the er to get deaccessed. Now I'm waiting to see if an emergency nurse with supplies can come access me. I've now missed 2 saline infusions & 2days worth of benadryl.

I am just shocked @ what this agency did.

Oct 1 2019

My therapy is crafting. I love to get lost in a card

Dec 30 2019

I realize I'm not consistently updating this page. So get ready; I'm going to last day there was a post & will put everything on here!

So someone gave me some sound advice today I thought I might share.
Let it go 🙂
I'm in a situation where getting what I need could possibly recreate the problem in the first place. I'm one to analyze, research, weigh pros v cons. I probably micromanage every aspect of my health; because if I don't, there's no guarantee i will get what is needed. But as I am learning from doctor after doctor, there's no telling how my body will handle what is thrown at it.
During my multiple hospital stays @ duke, I came in contact with the one of the best departments that handles leaks. People come from all over to see them.
I recently contacted them because of my multiple symptoms that point to the possibility of a problem. Of course the test ordered comes with a risk & so my mind wouldn't stop spinning.
So a very kind person told me I just need to let it go. I'm in the hands of the best specialists out there. I need to allow them to make the decision and trust they make the right choice.

So that is my plan. Have a happy new year!