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
So, I was diagnosed with H-pylori. I have to start a two week course of antibiotics which I’m really not looking forward to. They had to switch one of the anabiotic‘s to use, because of an allergy. They also had to get prior authorization from my insurance for the one that they had to switch to. I have to take them four times a day, and one of them I have to take two tablets of.
Trigger warning medical
TW medical . . . . . . . So, I spoke to Alsana today, and they do not take people with feeding tubes. They said if i got a feeding tube, I would need a higher level of care. I also spoke to Eating Recovery Center, and they said that they do feeding tubes on a short-term basis. So, basically, if I needed a feeding tube long-term because of gastroparesis, no place would accept me. So once again, we don’t fit into a box of criteria. So why even try to get into treatment? Also, Medicaid is coming up with a list of places they believe will meet my needs, and they are giving that to Meridian next week, so we don’t even get a choice in the places they choose. Everything just feels out of my control!!! Eating disorder programs don’t understand chronic illness, and I was even told by Alsana that in eating disorder treatment programs, you have to eat food, and if I went there, they would need a menu of foods from my GI team that I could eat, because i couldn’t have a tube during programming. The thing is, I can’t take the only motility med they prescribe which is Reglin. She also said that people on feeding tubes are just existing, not living. I’m half tempted to ask Megan to stop pursuing the eating disorder treatment. Ray
trigger warning medical update on us mentions cancer
TW Medical stuff mentions c*ncer. . . . . . . . . . . . . hello everyone,So, we went to what was supposed to be our dietitian appointment and an appointment with a physician assistant yesterday, and it ended up being an adventure. First off, we had the time for the appointment wrong. We thought it was at 2, but it was at 1. Got to love dissociation.So, we called Karen, and she said that her 2:00 patient might not show, so we took this opportunity to see if we could get ,the EKG done that the doctor in Chicago needed done. We got to the cardio floor only to realize that the hospital receptionist had given us ‘the wrong fax number to give our doctor in Chicago, so they never got the order. The person in registration at the hospital called my doctors office and got the order refaxed. We were so grateful to her. So, we got the EKG done, but when we called Karen back, she said she had to reschedule, so we never saw her.We then went to our follow-up appointment, and the ladz was really nice. The nurse we worked with also has two daughters with EDS and is in one of the Facebook groups we are in to!! This was really amazing!! We went to the secood appointment, and Chribbsy as she likes to be called, prescribed us some Omiprizole for acid reflux and some Zofran for We got some of the results of the scope we had done earlier, and we have an irregular Z-line which is caused by acid in the esophagus. The Omiprizole is supposed to help with the acid stuff. TW cancer mentioned. . . . . So we looked up what irregular z-line is, and we found that it can lead to Barrett’s esophagus and then possibly lead to esophageal cancer. This scared us a lot… We have to have repeat EGD’s every three years.
On another note, we were supposed to have therapy two weeks ago, but we had a doctor’s appointment so couldn’t make it.We had another one this past Friday as well, so Lily said she could meet on Saturday, so we were looking forward to that. She then texted us on Saturday to say she had a family engagement and couldn’t meet and asked if owe could meet on Tuesday. We had to say no, that we had a doctor’s appointment, so owe are meeting on Friday. We have our gastric emptying study on Februarz 5th, and hope to get the results back a few days after it. The meds will only be a Band-Aid solution as they won’t speed up the emptning of my stomach. We will see how it goes though. Sorry this is so long. Saphire is still struggling. She’s struggling with and flashbacks feeling so real, and with all this medical stuff going on, Emmie is having a hard time to. Thanks for reading, and sorry if this was triggering.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
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
Dark Place
I’m not ok. Dr. Bland took us off all meds. No one will help us. Our team isn’t answering my calls or returning them. I’m not sure what to do. I can’t go to the ER. They send us home even after suicide attempts. They don’t care.
Trigger Warning:
I now weigh 99 pounds. I’m 5 ft. 4. I just can’t do this anymore!!!
Ray
Good riddance to our former psychiatrist
So we had our last appointment with our now former psychiatrist yesterday because he is leaving, and thank God. He had told us before that he was going to prescribe 3 months worth of medication, but he is now only giving us one month supply. Also, I asked him when or if you knew anyone we could get evaluated for the dissociative issues, and he said that he didn’t know anyone who believed it actually existed. Plus, he said that he did not believe it did existed at all. He said it was just a figment of people’s imagine imaginations. I said how can he not believe something that is in the DSM? He is such a fucking jerk. Sorry for the language, but this angers me to no end. I should report him to the board. in other news, my PCP is referring me to someone she knows who treats pots. This is really good news as hopefully it will give me some answers combined with the second opinion Cardiology appointment that we have coming up on the 29th. Also, she has given me an assignment to take in at least 750 calories per day. I’m hoping I can do this. It’s going to be really hard, but I’m going to try. I’m supposed to go back to see her in 2 weeks to see if my weight has changed, and if it has dropped, we’re going to have to do something different. I am now down to 115 lbs. Later this morning, my caseworker is coming to take me shopping, and then after that the care coordinator from our insurance company is coming to do the paperwork for Homemaker Services which should be starting by the end of next week. She said that we should get roughly 20 hours per week. This is good news. Also, rpcp said that she knows a psychiatrist who might be willing to take us on as a patient. She just has to talk to her, but she says she can be pretty convincing. Given the situation with the insurance and the medication stuff, I don’t think it should be a problem, but we’ll see. I hope everything works out.
Ray
Good news about doctors and insurance therapy update and psychiatrist stuff
So, my doctor has agreed to see me even with my current insurance. they’re going to do this until either they get contracted to take my insurance or until I switch plans. This is really good news as it will allow me to stick with a Doctor Who understands my needs and complexities. I have a psychiatrist appointment this afternoon, and the clinic is writing off the cost of this appointment because of the insurance situation. Also, my therapist told me that I’m just going to have to learn to use the resources that I do have in regards to my eating disorder, and she also told me to ask the psychiatrist when I go to see them today about ways that I can go about getting further evaluated for the dissociative issues because she said she is not qualified to do those evaluations. I asked her what I was supposed to do if it got to a point where things are medically unstable and I needed more than just inpatient treatment, and she said that I was just going to have to get medically stable and then work with the other stuff on an outpatient basis. I just don’t want things to go downhill and then I not have the support that I need to properly deal with things and then end up going back into a relapse. The other thing that has me worried is that the medication I am on currently is not working like I think it should. One reason for this I think, is because the medication is not out an effective dose to make a lot of a difference. Also, the medication I am on for anxiety is not working. I’m going to talk to the psychiatrist today and see if there’s anything you can do in regards to that. I know they cannot give me anything that is lethal because of the risk of either me or the other alters overdosing on the medication. I know that the borderline personality disorder poses a risk and is a barrier to me actually getting what might help in treatment. I have an appointment in a few hours with my primary care provider because in order to fill the prescription for the ensure that she wrote, I have to have an a valuation by her which she then submits to the durable medical equipment supply store so that they can determine whether they will fill the prescription or not. Ivan have an appointment this afternoon with my psychiatrist to discuss what we are going to do after he leaves. I hope that they don’t have a weight requirement for the ensure prescription to be filled. Also, tomorrow morning my caseworker is taking me shopping, and then after that I am meeting with the care coordinator from my insurance company to do the paperwork so that we can get homemaker services started. She said those it should be started by the end of next week and that I should get roughly 20 hours per week. Also, in therapy yesterday, we discussed on the service reasons for why are use my eating disorder as a coping mechanism. It’s because I feel like so many things are out of my control and it is one way that I can control things. I hope this all makes sense, and thanks for reading.
Ray
need a friend…
Hi, it’s Ray, and I just cant keep doing this. I need something for this depression. There are insiders who are stockpiling our sleep meds and anxiety meds. Although, you cant overdose on buspar. We cant go to our local ER because people don’t understand… Our caseworker told us that the ER didn’t want us there anymore and to not go there again for psych. To go to the next city would cost us $40 which we don’t have. Just could really use a friend.
Ray
my multiple life 