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

Productive electrophysiologist appointment yay!

so today we saw the electrophysiologist. It was a very productive appointment. He’s starting me on Floren f. It’s a medication to help retain salt and water to help with the blood pressure. He also wants me to see an Ehlers Danlos syndrome specialist. He’s taking labs in like 3 weeks to check my electrolyte levels. i have to try the dose I’m starting on for a month, and if that doesn’t work, then we will raise the dose. Then we give that another month to see if it works. If it doesn’t, then we either try a med called Midadrine or do a tilt table test. I’m going back to see him in three months. He said the ED played a part in this. He said I most likely had POTS. He doesn’t know why I’m going to a neurologist. I now have to find an EDS specialist who takes Medicaid. Let the hunt begin!!! oh boy. Ray

GOOD NEWS, but a LITTLE NERVOUS

So, I went to see Jodi today. She wants me to keep a log of the food that I eat for the next two weeks. I’m not sure tas a good idea as that is one of the things that got me into my ED in the first place. She referred me to a dietician, and I’m going to see her on the 26th. I’m going for my assessment for the ED program on the 29th. We’re also trying to sort out the whole electrophysiologist thing. There was a mixup with communication between doctors. One thing that Jodi doesn’t understand is that there are going to be days that I’m going to struggle. She just expecffs me to meet my caloric intake goal every day. She’s finY going to see about increasing my Lamictol when I see her again in two weeks. Overall, a good appointment. Just a little nervous about the whole food diary thing.

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

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

Meeting with my caseworker

Hi everyone,

So I had my meeting with my caseworker Sarah today. We went over my goals for her being with me and we also went over my treatment plan. She says she is going to read some books about dissociative issues. We also signed a release at my former psychiatrists office so that my insurance will authorize transportation for me to go to my appointments. The amazing thing is that she has worked with someone with a visual impairment before so she knows what it’s like and how to handle things. She even understands eating disorders and how hard it is for me to do things. She also doesn’t agree that the whole heart thing is normal like the electrophysiologist said it was. She’s not the only one. Other doctors are saying the same thing. Overall it was a very good meeting. We gave her peanut butter fudge and chocolate chip cookies that we had made.

Ray

Appointment with the electrophysiologist

So I had the appointment with the electrophysiologist and he told me that what I was experiencing was completely normal. He said that it was normal for a person my age 2 have an increase heart rate when going from laying to standing. He even said it was normal for the heart rate to go from 70 to 145 when I go from laying to standing. He told me that I did not have pots. He said that what I was experiencing would go away on its own just by drinking fluid and taking in more salt. He said that people with pots cannot walk or exercise or do anything without passing out. He told me not to worry about the skipped heart beats and less I had over 10,000 in a day. Who can count that high realistically anyway? He also told me that the reason my heart rate increases when I stand is because the blood is pulling in the lower half of my body exactly like pots. He told me that pots gets worse that it doesn’t go away. Was ironic is that’s what I told him was happening to me yet he still said I did not have it, plus, he did not do the tilt table test to diagnose or roll it out. He told me that my heart rate could go up to 200 when doing activities and that that was normal. I have to see a different cardiologist because mine had to agree with his notes because he’s the expert supposedly.

feeling alone and discouraged

So, I’ve been on the phone since 11 this morning trying to get things figured out. I found out that I might be able to see the psychiatrist in my town if we can get a prior authorization from a doctor to the insurance company since the doctor is out of network with them. I can’t believe my caseworker didn’t follow through with the promises she made to the hospital. I cant believe our therapist just said she couldn’t work with us anymore. Found out that my insurance will cover Ensure. The nearest eating disorder treatment IOP program is 2 and a half hours away. I’m trying to get into other living facilities, but they’re not accepting me because of the fact that we have so many issues. My last phone call was made at 5:00 PM. I go to the EP doctor tomorrow about my heart and I will update you all on that when I get back. I will be getting the report on the psych testing that was done at HartGrove back on Friday. If you all want, I can share it here. How is everyone else doing?

Ray

Psychiatrist is leaving and Cardiology update

So, our psychiatrist is leaving on the 14th of December. The office wasn’t even going to call his patients and tell them. They’re just going to send a letter in the mail giving us our options. They said it could be months before we see a psychiatrist again. I went to the doctor’s today because my heart was skipping beats. It was skipping like 4 or 5 beats in a minute. Sometimes it would be fine for a minute or two and then it would just go back to skipping. I had to go to the hospital outpatient clinic to get an EKG done. They’re putting another 48-hour Holter monitor on on the 29th. Plus, our internet is down, so I don’t have my computer to email people or to block with or do what I do on my computer. Our next psychiatrist appointment was supposed to be on January 4th. We haven’t seen him since the 31st of October. Don’t know when we’ll see a psychiatrist next. This couldn’t have come at a worse time with all the dissociation and everything that’s going on right now.