chronic illness flare

Nausea… Go away!!! I just want sleep!!! Having a GP and POTS and EDS flare!!! What do you do for breakthrough nausea? Already took my orally decentigrating tablet, and can’t take another one for 5 more hours!! My BP is 88/48 and when I stand, my HR goes from 79 to 128. Ugh!!! How do you get your docs to give you IV Zofran? Ray

an email I sent my dietitian about formula

Hello Dustin,So, when we switched from 4 cartons to 5, they didn’t send enough cartons. I called the emergency person yesterday, and they said that technically, it wasn’t an emergency because I still had enough formula for overnight. I have 3 cartons for today and no more after that. I’ve been running liquid IV since yesterday afternoon when my cartons for the morning were finished. They sent me a total of 150 cartons with the 69 that they had sent when I got home from the hospital, and the 81 that they sent when we switched to the 5 cartons a day. I had already started to use 5 cartons a day from the 69 that I first got. The lady on the phone was blaming me for being out of formula, and she said that we could get the branch to deliver some if they had my formula in stock. She then said that if this happened again, that we would have to pay a $150 delivery fee. I’m on a fixed income… I just felt attacked when I called asking for help. Maybe not attacked, but blamed. Thanks for reading.
Ray

reflections for this morning

So, these are some of my reflections for this morning as I sit here listening to music. 

God, are you there? I ask this question all the time. As I sit here thinking about all the chronic illnesses I’ve been dealt. I could be angry and resentful that God would let this happen to me, or I could see that he made me like this to help other people and to see that maybe he wants to use me to help others, because after all, my story does matter and i matter.

Why did I have to go through trauma and be diagnosed with DID? Well, I can tell you this, I have DID because it makes me stronger and each of my alters are a testament to that strength. They each are a piece of the puzzle that may at times seem complicated and hard to solve, but it is a beautiful masterpiece made in God’s incomprehensible beauty and wisdom. So, on the hard days when trauma and flashbacks are overtaking me, I remember that I am made in His image. He decides the plans for my life, and nothing happens without a reason, whether that be to teach me a lesson, or whether it be for me to gain more wisdom, there is a reason for everything. If you are going through a hard time, God wants you to know that he’s not finished with you yet. He has so much more planned for you, more than you will ever comprehend or know. Much love,

Ray

medical frustrations with fluids

So, I have POTS and gastroparesis and EDS. I have a port. My POTS doctor is only willing to give me 2 L a week of IV fluids for three weeks. I’m tube dependent as well. I also take Lenzess and so lose fluids there as well. If I didn’t take it though, I would be constipated. I went to my urogynocology doctor for pelvic floor biofeedback therapy, and my urine was a dark yellow color. So, I’m dehydrated. I can’t get more fluids through my tube than I’m already getting. He will not recommend any more fluids than what he is going to give me. I’m completely lost, because I keep telling him that I only get 1228 MG of sodium through my formula a day. I can’t mix salt or add anything else to my feeds because It can mess with how the formula is absorbed in the small intestines. If I don’t get more fluids after the three weeks, I will keep ending up in the hospital for dehydration. So, what’s the point of me having this port then? I’m just at a loss. Any advice? The POTS doctor is saying that hopefully my body will adjust. They are also leaving it to my GI doctors to manage the nutrition and hydration stuff, but the GI doctors don’t specialize in POTS… ugh!!!

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

things I don’t take or granted because of chronic illness

Hello everyone,

So, these are the things I have learned not to take for granted because of having chronic illness.

I don’t take for ranted the ability to eat. I would so love to go to a restraint to get something to eat like a chicken sandwich, or that yummy ice cream, or even a soup with potatoes and cream and bacon. But I can’t.

I am stuck with getting my nutrition through a bag and a pump. It’s what keeps me alive.

Ray

Rayette Rucker

World Services for the Blind

Assistive Technology Instructor Online Trainee

Google Voice Number: 3146379985

JAWS 2020 certified

awkward

I’m at home, and I feel very awkward. Yesterday, the conversation was all about the restraunts people went to and how good the food was. I stayed out of the conversation. Then, they had my favorite meal from before I had my tube. It was lasagna with garlic bread. I just lay on the couch and pretended to be asleep. It was so hard. Just the smell alone was just…. But then, I thought of how sick the meal would make me, and yeah…. I’m fine when it’s one or two people eating in front of me, but when it’s a group, it’s overwhelmming… I also had to ask my little brother for help with pouring my formula into my bag, and I felt guilty doing it, because I thought I should be able to do this by myself!! I kinda felt like a failure… Then, my family told me my formula looked and smelled like baby formula and it looked and smelled disgusting. And I told them, well, it’s keeping me alive and left it at that.

Raych;

new diagnosis

I have to get an IV treatment every 6 months. I also have to take a liquid vitamin D suplement. Maybe Calcium as well. My doctor is also going to try and get me into home PT and she is going to try and see if my home nursing can be extended so my nurses can come once a week at least to help me look after my tube, as insurance only wants to approve them for 2 more weeks. Ugh!! I hate insurance.
I’m also being referred to an endocrinologist. I’m also getting my blood drawn this morning by my nurse.
Ray

tube feeding frustrations

Feeling frustrated. I was gaining weight, very but noweaI’m losing it again… My dietitian says that the 6 cartons of Vivonex 1.5 that I get a day should be enough to gain weight. If we have to increase it, I would have to increase my rate as I am already on 24 hour feeds. My GI had said that if I don’t gain weight in the next one to two months, I would have to go on TPN to get me over this initial hump. I hate this disease!

food the thing “i miss

You don’t realize how much food is a part of your life until you can no longer have it. I am thankful for my feeding tube, but I do miss food a lot! You would never know by looking at me that I have gastroparesis. I just want food!!

Ray