Angelika_23

Yes, new to me... I am feeling full all the time and when I eat I feel like I have overeaten, even if I only eat half a cup of rice. I wish I knew what this was... It just came on about a week ago. Hopefully the mystery will be solved soon. Also, the A/C in the house just went out. Sigh. Not a good time for that to happen. Angela

Hello All, The past week I've been waking up nauseated, staying mildly nauseated all day, and whenever I eat anything it gets worse. I feel like someone has punched me in the stomach. I am already on Protonix for acid reflux. This new nausea and stomach pain is different from the acid reflux. Today, on top of the nausea and pain, my HR shot up to 140 with no warning while I was sitting and talking to a friend. Normally I have a little warning when this is going to happen. Not today though. My PCP wants me to go have a gallbladder ultrasound on Friday. I hope this isn't gallbladder issues - I am terrified of the surgery. I have been through so much lately with my hospitalization, then then my son's, that I thought MAYBE it was nerves, but now I don't think so anymore. Any thoughts? Angela

We saw pulmonary specialist today. No change. I guess that is better than a change for the worse, but I would really have liked to see some improvement. The poor kid's morale is way down. He just wants to get better. We go back in about 2 1/2 weeks. If there is still no improvement, then we start with another CT scan and go from there to see what needs to be done. I hope it doesn't get to that. Thanks again for the thoughts and prayers. angela

Thanks everyone, I am trying hard to take care of myself as well as my son. It is hard... I tend to forget about myself and take care of others first. I think my body is trying to tell me something, I've had awful nausea lately, especially when I've eaten. This isn't normal for me. I'm guessing it is stress. Melissa, the three times a day thing is definitely wearing on me! I am so tired! Re: an arm wrap, he has something that is white and stretchy and works well. Hopefully it lasts the duration of the PICC. I think I'm doing pretty well with caring for the PICC so far. The medicine is delivered frozen, and won't unfreeze very well in the refrigerator. So I'm trying to work out a routine to give him his medicine (unfrozen) and not leave it out too long... Thanks again everyone for your well wishes! We go see the pulmonary specialist on Monday. Angela

He's home!!! He came home yesterday. I learned how to take care of a PICC line today. He has to have IV antibiotics three times a day. He woke up screaming this morning, but has been better throughout the day. It is GOOD to have him home, although when he woke up screaming it would have been nice to have a nurse around... Now trying to walk the fine line of taking care of him, and not mother-henning him to much. So hard. We go on Monday for another chest x ray and to see his pulmonary specialist. Thanks so much for all your positive thoughts and prayers! Angela

Hello everyone, It seems we have turned a corner! Yesterday the chest tube was removed, and we will hopefully start talking about bringing him home soon!!!!!!! As long as things keep on as they are, no fevers, no lung collapse, then we should get him home this week. This has been a long and difficult ordeal. I had a "breakdown" of sorts Thursday night and cried for about three hours. Since I hadn't cried at all before, guess I needed it. I am glad to be on the other side. Thank you so much for all your thoughts and prayers. You are truly good friends. Angela

I have been living at Children's Hospital since last Sunday, July 19. My oldest son, Christopher, who is 16, was admitted due to what they think is complications of swine flu. He got sick about June 16 when he was on a youth mission trip to Pensacola, FL. 3/4 of the kids that went came home sick, and several were tested and diagnosed positively with swine flu. I did not know at the time, and his dad took him on vacation for two weeks, so he did not get tested for swine flu. He was sick the whole time with his dad. Then he came back and I took him to the doctor to have him tested, and the test was negative. And I took him to our Pulmonary specialist. He seemed to be feeling better, his PFT was 124%. About 3 days later he left for another youth trip, and two days after that he called saying it was hard to breathe and his side hurt. Hospital said he had a very slight pneumonia, and put him on z-pack. Then I was in the hospital for my POTS, when I got out, the next day I was talking with Christopher and realized he had a high fever. I called the pulmonary spec, arranged to get him to Children's and he was admitted. They put in a chest tube to drain the fluid out of his pleura. He drained about 400 ml, then nothing. He was still having fevers, so I insisted on an ultrasound and they found more fluid in his pleura. We decided to go with surgery, which was this past Tuesday. They got lots of fluid again, plus a large abscess. Chest x ray that evening was improved. Then he started running fevers again on Wednesday, and the chest x ray this morning showed more fluid building. I have had to be a strong advocate for my son. I have had to fight with doctors. I have been at his side almost every night. I am tired and I am worried. He is currently "holding". Not getting better, but not getting noticeably worse, either. I just want him to turn the corner. Sunday will make two weeks in the hospital. No ETA yet on when he will come home. When he comes home, it will be with a picc line and 4 weeks of IV antibiotics. He has not been positively diagnosed with swine flu, but since several of the kids he was with were diagnosed, they are pretty sure that is what started all this. I just want him to get better and come home. I am doing the best I can with my uncooperative body. I am overtired and overstressed. We don't have a lot of support from family, but our church has been a godsend. Desperate Mom, Angela

Munchausen by proxy is when you do things to make your child sick. Angela

Tucks pads are good for irritation back there... Fluids were the biggest thing. I got LOTS of IV fluids. I hope you feel better soon. Angela

Hi, I had a bug, but because I've been sick with other things recently, my POTS kicked in. I had had diarrhea for several days, at least 4, before I went to the doctor. I had the stomach gurgling and terrible gas. I think I would have been okay if hadn't been so sick before, and if I hadn't gotten dehydrated. Please take care. Why are you bleeding? Do you have hemorrhoids? I have kids, so I bleed because of hemorrhoids. If you don't, where is the blood coming from? Take care, Angela

Please be careful, I had something like this and it did land me in the hospital. I got too dehydrated I guess. Have you tried Immodium for the diarrhea? That is what the hospital gave me. Please keep drinking fluids, Gatorade, whatever just stay hydrated. Good luck, Angela

I get to go home today! My white blood count is normal, my doctor says consistent with a viral infection. I have to get another CT scan with contrast of my liver, but they want me better first. Hopefully I will continue to improve at home. Thanks for all your support Angela

Oh, I am so glad it is over and she is okay!!! Yay Morgan!!! I hope you'll feel a lot better now! Angela

Hello, Luckily the hospital has wifi. My heart rate is still not behaving, but it isn't as bad as yesterday, either. My blood pressure is normal. My white blood count is elevated, so I must have an infection somewhere. Since I am having pain in my left side and back, I am wondering about a UTI or a kidney or bladder infection. I used to get those a lot. Anyway, the CT scan showed a mass on my liver, a very small one but a concern just the same. My guess is I have an infection and it is tripping my POTS. Now we just have to find the infection. I don't know how long they will keep me here, but I don't feel well enough to care right now. Thanks for all the positive vibes, Thanks, Angela

Hello, I've been up most of the night. I woke out of a sound sleep to pain in my left arm and left side of my chest. My heart was racing out of my chest, and a new one, trembling that comes in waves. I kept trying to distract myself by reading so I could go back to sleep, but it didn't work. I almost had DH take me to the hospital. I've had a run of things happen in the past month. First poison ivy. Doc put me on prednisone. Then a root canal, and the area got infected, so an antibiotic. (z-pack). Then an upper respiratory issue. These things brought me to my knees. I thought I was coming out of it okay, then everything happened last night. The trembling really bothered me. It would start in my legs, and work its way through my whole body. Really hard trembling. Then it would stop and ramp up again a minute later. Unrelated things going on are I have had diarrhea for a few days and nausea. I guess I could have picked up another bug? I am going to call the doctor this morning when the office opens. My DH wants me to call the cardiologist, but I don't think he'll be helpful. But, the family doc isn't usually helpful either. Thanks for letting me vent, Angela

One thing, it is kind of expensive. It lasts a while though because you don't use a lot and I totally think it is worth it. Angela

I flush easily, and my skin is VERY sensitive, especially on my face. I found that I can wear the Bare Minerals makeup without a problem. And, it doesn't run off if I sweat or even sleep in it (I did that accidentally once, took a nap with my makeup on). I wear the foundation powder, blush, eyeshadow, mascara and lip gloss. Well, when I wear makeup that is what I wear. I like it better because it stays on longer that the other "sensitive skin" makeup I used to wear. And it makes me look healthy! I normally look like a ghost. Until I flush. Angela

This happens to me too and I wonder if it is sinus related. My BP is fine. Angela

Ok, now it is in my chest. I can't even sit now for extended periods before my face gets red and I get dizzy and tachy. I really really really want to feel better!

Hi, For a long time I lost a LOT of hair. I tried everything, tea tree oil, etc. Nothing seemed to help. Then it slowed down. It doesn't happen so much anymore, I'm not sure why. I don't have thyroid issues, so that isn't what caused it. No one can tell me why it happened. I do notice if I'm having a bad POTS time I will lose more hair when I shower than "normal". Sorry I couldn't offer any advice. Angela

It all started with the emergency root canal last Monday. I was feeling better after it was done, but then BAM, constant unbearable pain. I was like an Advil addict, counting the hours til I could take some more. I had a prescription for Vicoden but was afraid to take it due to odd medication issues. I'm guessing the stress of being in so much pain set off the POTS symptoms. I wasn't able to get out of bed except to stumble to the bathroom. Then, the tooth area became infected. So I was put on an antibiotic and told to keep taking the Advil. Then, I developed an upper respiratory issue. Not sure if I have flu, a cold, or just my body revolting against me. I have been having tachycardia of about 130 lying down, fevers, etc. I am SOOO tired of feeling like this. Doctors don't seem to be too concerned... Guess because it isn't them feeling so lousy. My poor DH is at his wits end. I don't know why I can't have a procedure, or a cold, like a normal person. These things always render me bedridden. Well, I guess I do know why, but it is so frustrating that any little thing gets multiplied when you have dysautonomia. Anyway, sorry to vent. Just needed to get it out. Angela

I get headaches from aspartame. (NutraSweet)

As Summer said, I hesitate to dwell on negatives, but I too had a horrible reaction to Effexor. It actually landed me in the hospital. It totally exacerbated every symptom I had, and invented a few new ones. I don't tolerate meds well, so maybe that was my crazy body, and the meds might work well for your friend. If she's on something similar, maybe it would work. Good luck to your friend, Angela

Hello, I certainly feel for you with that toothache. I had that toothache over the weekend, and had to get an emergency root canal on Monday. Pain was better on Monday, but today I started having drop spells and a lot of mouth pain. Now, I am running a fever. I guess if I still have one in the morning I will call the endodontist and let them know so they can put me on an antibiotic. Blah. I am allergic to antibiotics myself. I can't take penicillin or erythromycin. Good luck! Angela

Hi, I have chiari too, but they did a CINE (?) scan and found my spinal fluid was moving, so no need for surgery. Boy was I glad. I consulted with 3 neurosurgeons, one said surgery, two said no surgery. I would definitely get a second and possibly a third opinion before going ahead with anything. I have also been counseled to avoid TCI. Angela