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azmusiclover

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Everything posted by azmusiclover

  1. I get this to a similar degree... I think it's just my body's way of telling me it's done for the time being. I usually push through and take my "down time" and then I get the second wind around 7pm. (which helps with getting the kids down to bed etc) I can't give any biological reason for it, but I have pretty much always been this way, even when I wasn't super symptomatic.
  2. Since I relapsed last year this has been an issue for me, and it has really cut into my one big hobby- playing poker. I just cannot sit for long periods of time at the table without my legs having ridiculous pooling and feeling awful. I am going to try to wear compression socks next time I go play and see if that helps. At home I am pretty much always legs up when I am sitting. lejones1- I also do the legs up to my chest thing in chairs that don't have the ability to put legs up. My kids do it too!
  3. I really like Dr. Goodman too! Sorry you have to carry the urine around all day. I do love how efficient they are with scheduling things. They try really hard to get everything as close together as they can. Good luck this week! I'll be watching for updates
  4. I am home I had 5 bags of fluids. Am on antibiotics too because I also have a UTI that I didn't know I had. But.... here's my situation/question. When I sleep, I know my heart slows WAY down. I've had that happen before on monitors and in previous hospital stays. First night in, the nurse wakes me up and asks me if it's normal for me to drop into the 50s. I said yes, told her that I have gone into the 40s and on occasion the uppers 30s. Last night I dropped to 38bpm. They assure me that it's "normal" however, I am not so sure. I am always tired, I am always fatigued, I never feel rested when I wake up. I don't snore, I don't have apnea, my oxygen levels are ok when they check my vitals, but my heart rate is just so slow when I start getting tired and then in sleep. My EKG was abnormal again today- it said marked sinus bradycardia with sinus arrhythmias, incomplete right bundle branch block; my 1st EKG Friday from the ER had the same thing but I had tachycardia with arrhythmias and also changes in my S and T waves and then those resolved and on the next EKG in the ER was sinus rhythm, but still with the incomplete right bundle branch block. I've seen the bundle branch block thing before and I want to know what it means and if I am having arrhythmias what I need to do about it. I've also had changes in my S and T waves, and never had a reason for those either. It was after a bout of bad intestinal bug, and my stress test was normal, so they didn't investigate further. I am convinced that part of the reason I'm so darn tired is that my heart is too slow at night and I'm not getting enough of what I need to feel "rested" I am calling my Mayo cardiologist tomorrow and getting an appointment ASAP. Thoughts?
  5. Katybug, I am so so sorry that you got the tummy bug too, and your mom. 3 of my family- myself, my daughter who is 3 with medical issues and my grandpa who also has medical issues all ended up either admitted or seen for fluids with this bug. The doctor told me to be very careful as this bug does not seem to have the one and done effect- you can get it again. Families passing it around over and over... I'm sorry that you met your bathroom floor too. Feel better soon!
  6. I never thought of it as "art journaling" but I suppose that's what it is! Cool!!!!! I'm with you, no painting. Too messy That's why I like the collages, just cut up magazines and glue them to the board. I think you can find old magazines at thrift shops or ask at your doc's office when they throw them out if they will save them for you, if anyone is interested in doing it.
  7. I hear you!!! I'd like to forget yesterday.... well in a way, I've forgotten parts of it
  8. Hi Pink, glad you are here, but sorry you had to join us. Recommendations for everyone are different because our bodies process things in different ways. I live in AZ and it's very dry here so I shoot for about 90oz of fluids during summer and cut back to about 75-80 in winter. I am still playing with optimum. Salt intake varies because of digestive problems for me. I find that I crave salt so I know when I am not getting enough. When I had periods, they were awful. I have low blood volume and endometriosis so I used to have just horrendous cycles and I would become anemic very quickly which definitely aggravates POTS symptoms. I had uterine ablation done so I no longer have periods and I do not miss them at all. Good luck with everything! Take it day by day and don't feel like you have to understand EVERYTHING immediately. It's a complicated thing with lots of factors, symptoms and stuff. Hugs!
  9. Music for sure, listening to it and playing when I can. Read too. Do Sudoku and I got this new thing called "Colorku" It's sudoku with colored balls instead of the numbers. It has a board and puzzles you can solve and you can convert sudoku puzzles into the colors. Very cool. Found it on Amazon after the kid's OT brought it over to the house. I also love making collages from magazines and media. To me they are art. I pick a topic and just start cutting up stuff that relates and then making the collage on some poster board. I did one on New Years for what I want for 2013. I used to cross-stitch too, but it hurts my body to be bent over and working it for too long.
  10. I'm so glad you had a great EMT. I can recall a number of times that it was treated as "just a panic attack" I'm still surprised when I am treated like I have a legitimate medical condition, after 15 years. How sad is that??? Still kind of in shock that yesterday I was seen so promptly and they didn't blow off the POTS stuff and some knew about it and they looked it up and looked through my Mayo records. I am working on feeling better! Thanks!!
  11. It's more "embarrassing" because I've lived with POTS for so long (15+ yrs) and for the most part I don't pass out because I have learned what I can and can't do and I do a really great job keeping up on my fluids. And, fainting off the toilet just is embarrassing but kind of humorous today. I am sure this will be a story among friends and we will all laugh about it. I'm almost done with my 4th bag. I'm starting to use the bathroom with a little more frequency. My labs look a ton better and the doctor said I can go home tomorrow most likely. They told me today in the ER. Jerks. LOL. They still have not done my EKG for today. It was ordered last night for this morning. This tummy bug is no joke. Doc today said people are getting it two and three times, just passing it around in families. And it's both ends.... no fun. Wash hands well and stay home if you don't feel good! Fluids fluids fluids. Wishing I was home, watching basketball with my husband on the couch and cuddling with my dachshunds!
  12. Yesterday and today have really ******. Woke up yesterday with a fever. Other family members have been sick with a tummy bug. Naturally it attacked me. Puked a couple of times, took my Zofran, rested, achy, tired, fever kept going up. Broke during the night. Felt pretty good this am. Took the dog to the groomer. Changed the sheets on the bed. Tried to have some food since it had been a day since I had eaten. Just some chicken noodle. Then.... holy Montezuma's revenge. After the 6th trip in less than two hours, I started feeling really weak and bad. Called my husband to come home immediately (while I was on the toilet....) then, everything went black. Came to, on the bathroom floor to my dog licking my face. Don't know how long I was out. I stayed prone, grabbed my blanket and wrapped it around me and just waited. Hubby got home, I tried to get up and almost fell over again. He loaded me up to Mayo hospital and they checked me in, took an EKG and then took me back first in front of the packed waiting room. They were all glaring at me. Turns out when you pass out on the toilet, onto your tile floor and you have changes on your EKG, they really check you over and then even though I told the doctor I was sure I passed out just from being dehydrated and my potassium was low, they refused to let me go. Kept me for observation. I've been informing the staff on the floor about POTS. Although I was pretty happy, this ER rotation and shift had people who knew what it was!!!! I must have landed on my arm, because it's starting to hurt. They x-rayed it, nothing broken, but I bet I bruise up pretty good. I'm hopefully going home tomorrow. I had two bags of fluids in the ER and I feel like a million bucks. They are running another bag in right now upstairs, just slowly. I'm not allowed to get up without assistance. Trying to eat here and there... my stomach is still really gurgling. Here's hoping you all have an "easy POTS day" Sending you lots of fluids/salt and hugs from the 3rd floor of the Mayo Hospital!
  13. She gave me a printout of the exercises she wants me to do at home. I'm not sure how to describe them because she has me doing them in a specific way for my body. PT is funny like that, because our bodies are so different what works for me may not work for someone else, or may cause someone else pain, where it wouldn't hurt me. She has me doing bridges for my core in various ways. Which is good because I am laying down. I did get a pamphlet from Dr Goodman the last time I saw him with some exercises specifically geared toward POTS patients. Can you call Mayo and ask them to send you that handout? It was pretty descriptive. Also, can you see about getting PT locally? Would your son's doctor write a script for it since your son is struggling to keep muscle mass?
  14. Someone willing to research and educate themselves is someone to keep on your medical team, in my opinion! I'm so glad that you had a good experience. (sorry you have to do more testing...ugh)
  15. I am actually getting PT through Mayo Clinic at the Mayo hospital. They offered it to me at the hospital and at the Clinic on Shea. Hospital is much closer for me. It's a long way from where you are. If they had me doing that last year when I was in the East Valley, I would not have been able to do it.
  16. I did like the rheumy I saw. I'm happy to pm you the info. I had to get a referral from one of my other mayo docs for the rheumatology consult. They don't take self-referrals in that department. I tried LOL. Dr. Goodman first diagnosed me as hypermobile and they confirmed it at my rheum appointment yesterday. I definitely meet the criteria for "Benign Joint Hypermobility Syndrome" and they feel that's the cause of my fibromyalgia. My PT is very knowledgeable about both POTS and being hypermobile. She was very specific with the exercises she wants me to do and how to do them- where exactly to stop, how many, how much etc. Gave me two therabands. Very kind, very instructional and also very "you tell me what you can do today" understanding. She told me that I need to stop doing yoga class for now until my core is more stable because I could really injure myself since I'm so flexible my body doesn't know where to stop. yoga is one of the things I like to do exercise wise when I can!!!! She did say I can do a little bit on the video I do with my kids, but how to adjust my body. At some point she wants me to go to a Pilates class. Yeah, and I'd like to work again too. LOL. I'm so sorry that your experience with aqua PT was something that made you worse. I am guessing in water the body really doesn't know where it is in space so you could go too far with the hypermobility. So hard when you try to do something to feel better and it ends up making it worse. Look for my pm!
  17. I met with the Rheumatologist yesterday for the first time. I'm definitely very hypermobile and I also got the fibromyalgia diagnosis confirmed. Funny, it took a year to see the Rheum from when I started at Mayo because the consultative med doc didn't think the fibro was there in my case because I wasn't depressed. (obviously he didn't know me, and doesn't realize how much stress it takes for me to get "depressed") I hate that stereotype btw. Anyway, Rheum wanted me to start PT to help strengthen my core and keep my joints from hyperextending so I don't injure them, and of course help with the pooling with the POTS. They called me to schedule as I was driving home and I had my first PT appt this morning. I am SO TIRED. I don't think of myself as terribly deconditioned, since I have the three kiddos and I participate in PT from time to time with them, I try to do yoga and swim when it's warm. I can walk around. But, after 45 minutes with the PT, just doing some light things, I am beat. I like it though and I hope that I can keep going and it will do something for me. The PT actually knows about POTS so I am happy about that and I hope she can help me, whatever that looks like. They are also scheduling me with a doctor there that does biofeedback. They want me to see if it will help me actually fall asleep instead of me just laying there, not getting comfortable, staying awake, can't turn my brain off.... I'm pleased that Mayo is starting to incorporate more non-traditional therapies into their treatments. When they start offering massage for fibro and other pain conditions I will be over the moon. LOL. I just really would like to avoid medication since I'm so med sensitive. Anyone else tried PT? Biofeedback? Thoughts?
  18. I've had two different lumps evaluated, one in my late 20s and one in my early 30s. It was scary and definitely a nerve wracking experience. Thankfully, mine were ok and it turns out I just have dense, fibrocystsic breast tissue. I will hope and pray that your results are benign. It is scary and I am sorry that you are going through it.
  19. Hugs. I really really understand how this feels. I have it too with my friends and then with my kids. I feel isolated on all sides and it *****. If I didn't have people coming to do therapy with the kids, I don't know if I would see any adults besides doctors! Even now it's therapists and doctors. I am sorry you are struggling I really like the girls night movie marathon idea. Or what about a crafting evening? Makeup night? Even if you feel bad.... push through it. Getting that social contact will help your mood and spirits and will probably make you feel a little better. Even when I feel physically awful, having connection with others and spending some time with them totally makes me feel lighter and better in a different way. It all helps Hang in there girl.
  20. Good luck! I was just out at Mayo yesterday and then again at the hospital today. Sometimes it feels like I live there with other family members doing stuff there too. I hope everything goes well for you. The weather is just awesome right now. Can't wait to hear about your visit!
  21. Thanks Issie, it's definitely something to look into. I'm a little overwhelmed on dietary changes right now!
  22. The weight loss may not be the medicine. I lost over 30 pounds in a couple of months when I relapsed last year. I still have yet to put most of it back on. I think I've gained back 5-8 pounds in a year. I hope you get it figured out, I was on the dangerously thin track as well....
  23. I totally agree with you and I know that when I flare, I lose weight. Like lots of weight. I may try the enzymes again. It's not like it's going to hurt anything! I miss eating salad. LOL. I am just going to keep learning more and trying things and not give up on having another remission.
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