trigger warning: medical stuff and still more waiting

Trigger warning: medical stuff and eating disordert
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So today, we saw a different nurse practitioner as our primary care doctor is on vacation until Monday. We don’t know what we are going to do from now on because my primary care provider was seeing me once a month until the residential treatment got approved, so now I guess they are going to talk and figure it out. I also think the nurse practitioner is going to refer me to a geneticist to get tested for Ehlers-Danlos syndrome but she believes I most likely have. I also have to see the ENT again because we have ear infections in both ears. This is not good as ear infections in the past have caused our eardrum to rupture which the left one already is. We are very fatigued and in a lot of pain both because of EDS and body memories. I hope my team can figure something out. I’m hoping that I can go to the geneticist and maybe get some answers. They might need an echocardiogram before they can get it approved, but not sure yet. Think we are going to go to sleep for a while, and hopefully when we wake up, we will be in less pain. Doesn’t help that we are on our period.
Ray

It whirlwind of craziness and frustration

Hi everyone,

So we don’t have a therapist or a primary care provider. Was supposed to see the psychiatrist on the 18th which was my birthday, but got there and found out he was out sick. They said they tried to call me but they had the wrong phone number. Getting a new primary care provider on 13 August. The electrophysiologist we had left the practice so know how to see someone else so cannot get medications raised until we see him. How do you go to the ER this past Sunday to get fluids because blood pressure was 78/35. Yesterday morning it was 72/27 but I can’t go to the ER every time it’s low. Just wish this craziness with Stup. So basically right now for support we just have our dietitian and another lady who is helping us through an organization called beauty after bruises. Every therapist I have tried to call has said that there are either too far away, can’t work with my insurance, or didn’t think they could work with my issues because they are so complex. Because I have postural orthostatic tachycardia syndrome, the anorexia does not make that any better, but how am I supposed to get treatment when no one wants to work with my insurance and my insurance doesn’t want to pay for the programs that can help!

Ray

POTS FLARE UP!!!

So, today has been hard. My POTS is flaring up again. I woke up this morning, and I checked my pulse, it was 69. I got up and went to make breakfast. All I did was put it in the microwave. Within 15 minutes of standing, my heart rate was 161. I had woken up at 10:15 am, but by 2, I was tired and had to go to sleep again. I only woke up about an hour ago. POTS is so frustrating to live with. I go to the cardiologist on Monday to get a second oppinion about it. If anyone has any advice on dealing with this condition, please help. I’m taking in extra salt and as much as I can. I also have an eating disorder. Thanks for reading.

Ray

going to beat this eating disorder!!!!!

Xo today, I had an ice cream sandwich because I wanted it!!!! I would normally deny my body this pleasure, but I don’t want to live like this anymore. I want to recover!!!! I think 17 years is long enough to deal wit hthis illness. Now hopefully, I can get the alters to be on board with this to. If you’re reading this and you suffer from an eating disorder, just know that you are not alone, and you are perfect just the way you are. You don’t need to change your weight to be beautiful. You deserve food, and your body needs nourishment. If you need someone to talk to, you can email me at

Rayette.rucker23

Ray

POTS — actually having a good day!!!!

So, today and the last few days have been really good with the heart rate and POTS symptoms. Maybe it’s because of the extra salt that I’m taking in, or maybe it’s just good luck??? I don’t know, but I’m enjoying it while it lasts!!!!!!! I usually sleep on my couch because it’s elevated because I sleep with my head on the armrest, but tonight I’m going to try and sleep in my bed and see how that goes.

Ray

Ehlers-Danlos syndrome? Possible diagnosis

So, my primary care provider told me today that I most likely have Ehlers-Danlos syndrome hypermobility type which is a connective tissue disorder that affects the skin and that it is translucent and stretchy, but it also affects the joints because they are hyper mobile and move in ways they shouldn’t causing frequent subluxation and sprains. This along with pots makes for a very difficult time. These are both chronic illnesses. Looking for support in anyway I can get it.

Echo Today

So, I have my echo today. Hopebblly, nething is wrong. I won’t get the test results back for a while. lly, I can still wear lotion and stuff like that. does anyone have any tips for showering, cleaning the house, and cooking when you have POTS? Have a good day, and thanks for reading.

Ray