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azmusiclover

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Everything posted by azmusiclover

  1. My son is 12 and has been experiencing some heart rate/blood pressure changes, feeling faint, seeing colors when he stands etc for about a year- right when he started hitting puberty full on. I talked to Dr Goodman at Mayo about it and have let his pediatrician know our family history since the kids have other needs and we have an appointment to see Dr Goodman with my son in August. Given her other cardiac issues, I would mention the symptoms to the cardiologist for sure at the appointment and then maybe casually mention that POTS is a consideration for yourself if there seems to be an opening in the conversation. Best of luck to you and I hope that she feels better and the appointment is helpful.
  2. I saw Dr Goodman today. He has a few more gray hairs this time, but had on a very nice suit and tie. He is very pleased with my progress and we talked about what I feel has helped me to pull through this flare. He went back down the path of mast cell with me and talked about how in the last few months since I had last seen him, he has seen so many more patients who present with hyperpots, EDS/joint hypermobility and have mast cell symptoms even with testing not showing. He said I completely fit the profile and since I am already doing partial mast cell treatment and feeling much better with it and doing better he believes I have a mast cell disorder. Quite a change from last time I saw him! I was pretty sure mast cell was an issue and he wasn't as sure. Treatment we are starting is Allegra, higher dose Pepcid and Cromolyn. He said I can continue to use the benadryl daily since it helps me. He is hoping that I will do even better and that my GI symptoms will calm down too. He also wants me to continue the PT since that has helped me significantly. We talked too about autism and POTS. He is working with some other doctors trying to get funding for research on autism and orthostatic issues and autonomic dysfunction. My son just turned 12 and is starting to show some signs of OI with puberty and thankfully his pediatrician was happy to have us see Dr. Goodman. I should be getting my son in to see him this summer. He said he was looking forward to it. Great appointment and I am pretty happy with the path we are on. Not thrilled about joining the mast cell club, but I have suspected it since I first read about it on here. He told me to follow up in 6 months!
  3. I've been working on Dr G to do the IV's for me in flares because I have kids with special needs and I HAVE to be functional. Not that other kids don't need parents, but with mine their dad is not involved and my husband can only do so much. With all their therapy appointments and Dr appointments I have, I have to be able to transport safely etc. Dr G still won't do it. I see him next week and I'm hoping he will at least write me a standing order for the weeks when I have massive appointments (like next week...) Especially during AZ summers which are quickly approaching. I don't plan on him giving in at all. But I am going to keep asking. I also have a 3 year old and I feel bad that I can't do more with her and that my boys 9 and 12, ask me often if I need my "sick blanket" that they named several years ago. They think it's magical I just remind myself that all I can do is my best. I relate to feeling like I can't keep up though!
  4. It's a pretty strict diet. Very low fat, low fiber. I can tell when I don't follow it. The bloat stinks and I'm not a fan of the pain and gas either. I am doing better since I'm on it. I take a lot less zofran, which helps cut down the constipation. I hope the GI can find you some relief! Hang in there.
  5. I have been sick almost every 2 weeks since Thanksgiving. Sinus stuff, stomach flu twice, once requiring hospitalization. My daughter has been sick too. She had a wicked case of strep along with the tummy bugs and the sinus stuff too. My middle boy had a couple rounds of it, but not too bad. Oldest boy barely got sick at all. Lucky him! I really really hope that as it gets hot here the germs will go away. Then I will just feel crappy from the heat! Feel better soon!
  6. Lots of GI issues here. Was diagnosed with IBS in college. It resolved for awhile, and then after I had my kids, I started having problems again and then my gall bladder quit and ever since that, I have lived on zofran and deal with pain and cramping and tummy issues almost daily. I bloat after eating, gas, you name it. I have a lot of trigger foods. I can't eat salad anymore at all, tomato irritates, rice is horrible, can't do much that's fatty or high in fiber or fat. I'd rather just not eat at this point. For about 6 months last year my diet was pretty much chicken noodle soup or broth and saltines. I have to scale back to that every week or so when I push too much with food. I've been scoped both ways, irritation/gastritis and I have had the gastric emptying test done. It showed severe gastroparesis. I think that's because the test was done in the AM, but that's my theory. GI issues are pretty common. Sorry you are struggling with them
  7. My feet are always cold. My husband will touch them and be amazed by how cold they are. It's 91 today and I am under blankets for my legs because my feet and legs to an extent are cold. AC makes me even colder. I cannot have anything blowing on me. I swear I will turn into ice. I am hyperadrenergic POTS, possibly MCAS and very hypermobile (mostly likely EDS; I want a second opinion on that from someone who sees it more frequently and looks at all my symptoms)
  8. Wow! It sounds like you really did your research. It may have been that the counselor just went with what worked for her other patients and couldn't break out of the box for you. I am sorry that even with all that preparation and communication it didn't end up being a good fit. I like asking your PCP if they have any recommendations. I got sick with mono my first time through college, I kept going even though I wanted to take time off and shortly after the POTS symptoms started. I kept trying for 2 years and it was killing me so I quit. I have about a year left and I am doing school online. I like it so much better! I'm quite introverted so it works well for that as well as for my days that are hard. (and kids stuff and dr appts, and and and) After I graduate my plan is to continue online with a graduate degree. I am thinking of getting my PsyD, and I'd like to end up counseling families and clients that struggle with substance abuse and addiction. If I find I don't like that as I get more into the program I would probably want to work with families who have kids with special needs. It's very hard to find someone who understands that in the counseling world. I wish you all the best in finding someone to work with. Hang in there! The right person will come along. And I don't believe in accidents, so I think your last counselor was right for you, in teaching you whatever there was to learn. Maybe it was to be a better advocate for yourself or fine tune what you need etc.?
  9. I've been seen at both Rochester and AZ. I was originally diagnosed in Rochester way back in the 90s. I don't know who is there now to see. I really liked the doctors I saw when I was there at the time and I love how they handle things. I think bringing a list of what you want to try and what you'd like to do is very helpful since they will see you for just a snapshot of time. When I went I met first with cardiology and they did a big work up, I had labs, autonomic testing, EEG, more bloodwork. Then I met with the cardiologist again and went over everything. At the time the cardiac stuff was my main issue. Now, in AZ I have a cardiologist, neuro, GI and I've seen Allergy and Rheum. If other things come up on your labs or symptoms warrant seeing other specialists they are fantastic about trying to get you in with someone while you are there. They do a great job and I've never met a staff person who wasn't friendly/helpful. What's great about Mayo Rochester is that everything is connected by underground tunnels. You never have to go outside if you don't want to. Including the hotel I stayed at and the hospitals. It is a huge complex and there are wheelchairs everywhere if you need to use one. Good luck and I wish you well.
  10. I am so sorry that your last counselor didn't seem to get it. Not every counselor is for everyone. (I'm in school to become one! LOL) Just like everyone has different personalities, every counselor has different styles in how they work with people. One of the things that really helped me to find a great counselor was to figure out what I wanted from therapy and find a counselor who aligned with that. Do you want a counselor to be a sounding board? Do you want someone to give you homework? Are you looking for talk therapy, or experiential therapy etc? Are you open to group therapy or do you prefer private? (these are just suggestions, you don't need to answer them here!) Then I made a list of my goals and what works for me to achieve them. I found counseling to be much more beneficial to me when I had that kind of direction. It also helped me move through stuff since I knew when we had completed a topic. (or I could move to a deeper level with some of the harder stuff...) My advice to you would be to research counselors through psychology today's website or even yelp or online reviews. See if you can search their topics of interest or their specialties. Then I would ask the counselor about their experience with dealing with people who have chronic illness in therapy, and share with them what you are looking for. The counselor, if they are being true to their profession will let you know if what you want and need they can help you with. If that particular counselor you interview doesn't think they can help, they may know a colleague who can. I treat it like a first date or an interview. Just because you meet with someone once or twice does not mean it's a good fit. You need to be able to trust that this person can help you and it's OK to be honest about that expectation up front. On a side note, people who have chronic illnesses often have anxiety and depression along with the illness just from the stress of it. However, not everyone does. I'm wondering if your old counselor just hasn't had much experience with chronic illness and is just addressing it from one viewpoint. Obviously that's not helpful for you! It certainly doesn't help the remove the idea that "it's all in our heads." I would encourage you though, to not throw the baby out with the bathwater, so to speak. I've found that a lot of anxiety techniques really work for me with POTS symptoms- especially adrenaline surges, and staying mindful really really helps. Positive self talk etc. I love progressive relaxation and I'm starting biofeedback this month for sleeping issues. Again, what works for me may not work for you, the joys of being individuals. Good luck and I really hope that you are able to find someone who is a great fit and will help you deal with your struggles.
  11. I just started PT for my hypermobility and to help me get back into exercise. My PT is very willing to go at my own pace, while helping me push just a little. So far it's been going well. We do exercises to help strengthen my core and my legs. Your PT should do an evaluation on you in your first appointment to target the areas where you have weakness and also get a feel for your restrictions and concerns and what you want/need to work on. Every PT does things a little differently and of course they are going to be providing you with direct support and guidance. Be sure to have someone that you trust, that you feel listens and you feel like you can work with and trust them to push you, even when it's hard! I like my PT a lot and I'm looking forward to going to more sessions. I kind of look at it like having my own trainer who is medically based and my insurance covers it! (without being in a sweaty gym with people staring at me if I have to sit!) Good luck!
  12. Nowwhat! I see Dr. Richard Lee in cardiology. (There are two Dr. Lee's) If they see something with my oxygen I am not sure if they will send me over to pulm. but Dr. Lyng is my MIL's doc for her cancer, so I have heard great things about him. I'll keep you updated on what they do, find out etc. And, we'll see if Dr. G orders anything as well.
  13. No I don't I bought it like 3.5 yrs ago after my daughter was born and I wanted to hold in the remaining baby weight lol. It's so stinking hot here for a majority of the year I haven't worn it much.
  14. My son had his very first concert tonight with the Phoenix Boys Choir. I really really wanted to go. Even though I'm in a bit of a flare, I showered, did my hair and makeup and I got a new dress, so I put my spanx shaper on underneath. I made it through the whole concert!!! I think the spanx really helped with the pooling and I could stay upright in the seat. I'm wiped out, and I am sure I will pay tomorrow, but I was so happy to be out in public and see my son perform and actually be dressed up with makeup on! In the not too hot months, I may need to add that as a staple to my wardrobe. My son did great. He looked so grown up singing with all the other boys and wearing his uniforms. I'm glad I didn't miss it! Hooray for getting out of the house and doing something that isn't doctor or hospital related!
  15. Thanks! It was a good visit. He wasn't too worried about my EKG changes since I was really dehydrated and my electrolytes were off. However, he really listened to me talk about my fatigue and lack of restful sleep, even when I sleep 7-8 hours. He asked hubby if I snore, which I don't, and he asked me if I get out of breath when I walk upstairs or any inclines. Which I do. He said he isn't completely sure what he's looking for, but he does NOT think these symptoms are related to POTS. Next step- next week I go for another Echo with a bubble study again, and then I get to do an oxygen test, where I get to walk and they check my oxygen levels and then put me on an incline and see what happens. Then a 30 day event recorder gets put on. UGH. We'll go from there. I feel incredibly validated. I felt listened to and heard when I said that this feels different than when I had my initial POTS flares. I'm happy that he's investigating further even though he's not sure what he's looking for. I feel like he genuinely wants me to be well. I see Dr. Goodman in 4 weeks too so it will be interesting to hear his thoughts on it. All in all, a good appointment.
  16. I am going to see my Mayo cardiologist tomorrow for a follow up from my hospitalization. I am not getting any better and I am still really struggling with the fatigue and feeling things being "off" Today was probably one of the worst POTS/Fibro days I have had in awhile. I am really nervous about what he may suggest about what's going on or what I need to do, or if there is nothing I can do. I just know I'm tired of being so so so so so so tired.
  17. Yes somedays I do! Especially when my 3 year old is screaming and the dogs are howling and the boys are being animals with clothes on. I'd take a nice closet sized practice room then!!!!! INTJ's rule. Especially female ones. Apparently we are a really rare breed. INTJ's are only 1-2% of personalities and of that only .8% are female! It's amazing how I can be a redhead, have a rare personality, have a rare illness, have 3 kids on the autism spectrum, but I can't defy the odds anywhere else like win the lottery. LOL!!!!
  18. Mayo is really hard to get into out here in the winter months. You will have better luck in the summer. Also if you are not an established Mayo patient, you may want to start with a consultative medicine appointment and they discuss your history, your current symptoms, do a physical and then they refer you for testing and to doctors to see based on your issues. I was already an established patient so I could get in quicker (I was originally seen in MN) but I saw the general doc first and then got my referrals to cardiology, neuro etc and had some of my testing done before I even saw Dr. Goodman.
  19. I have a couple of family members who also have GP and they are not thin. They also have a terrible time getting the weight off. They are on medications for other things and I think that is why they can't lose. Side effects just stink
  20. Kris, the bloat from gastroparesis is just the worst. I'm thin and then I look like I'm 5-6 months pregnant after I eat. I'm so sorry that you are dealing with that. It really helps me when I eat small amounts, every 2-3 hours. It cuts down on the bloat and it also keeps my stomach moving. I've found the nausea and the gastroparesis is worse when I don't eat. I'm glad that you are getting some answers. I hear you on the years of searching. I started dealing with all this stuff when I was 14 and now I'm 35. EDS/hypermobility was discussed just in the last couple of years, even though I've had symptoms for years. Makes me angry when I think of the time that was wasted with doctors just thinking I'm a stressed out mom or just tired because I have 3 kids, and those 3 kids have extra needs! I'm happy to be moving forward and I am happy to see that you are too. Good luck on the stomach emptying test. I'll be curious to see your results.
  21. Living with addiction is very hard. Even if you have the best of reserves and are in great health it is very hard on you. I am very sorry that things are so toxic. My best advice to you is to look at where you have control and make the best decisions you can in those areas. What you can control are your reactions, your thoughts, what you say, your perceptions. I know that some of that is tough being on the spectrum (I have 3 kiddos on the spectrum and my ex is Aspergers) but really pick one thing each day that you can make a positive choice. One thing we started at our house about 6-7 months ago was going around the dinner table and each saying something that made us happy in the last 24 hours (nothing future like, I'm happy my birthday is next week...) and we do this three times. At first my kids didn't like it, but now they fight over who goes first! It really helps to change a mindset. If all you can do is sit in your room and list out 3 things that made you happy in that day, it might improve your mood. And really it can be as small as, I'm happy I have clean sheets on my bed, I'm happy I took a shower, I'm happy I woke up today, etc. I swear, it works!
  22. For me, I "perk up" when I have IV fluids. My color is better, I feel more alert. I also have more energy and am able to do more things without feeling so wiped out. My blood pressure stabilizes and I just feel better overall. I feel more "normal." I hope that helps.
  23. Racer- I'm also an INTJ The nickname of that personality type is "The scientist" I also had to read through it a few times before I would agree with the assessment! I love the Big Bang Theory. We watch it all the time in my house, and the few episodes that were clean enough to let the kids see (my boys with autism) they both identified with Sheldon! Each had different aspects of him, although my 9 year old sometimes, it feels like I am raising Sheldon. I'm not just an introvert, I admit, I am also a nerd! And I agree, it's much much easier for me to interact with people via a forum. I can chat when I want to, I don't have to be around a bunch of people etc. jknh9- I also am classically trained on piano (and violin) and I studied vocal performance in college. POTS put a bit of a damper on that one! I play a bunch of other stuff too. Awesome to read your post
  24. Glad the appointment went well. Interesting about the spine pain and hopefully encouraging that there was some sympathy regarding living with your symptoms. I am crossing my fingers for you!
  25. There are plenty of free myers-briggs tests online if anyone wants to take it. I like the one at humanmetrics.com After you take it you can read about your personality on some of the links they have. I hate bananas- I came out in the high 80s as a introvert but I am much more near the middle on the S/N and T/F so I flip between those. Giraffe- doesn't it feel great to get more of an idea of yourself? I really pushed myself to be extroverted which came off as totally fake, I'm sure and it left me so frustrated for years. I am so happy that I finally found out I am an introvert and why I do some of the things that I do!
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