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About sarahm

  • Birthday 11/29/1980

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    Boston, MA

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  1. I own a Concept II rowing machine. I bought it used off of craigslist. They are quite pricy new, but you can usually find a good deal used and I'm told they pretty much last forever. Concept II is the go to brand for people who actually row. I don't really know much about other brands. I started rowing at cardiac rehab, and I liked it so I ended up getting my own. I started basically as slow as you can go on the rowing machine, they go by watts at cardiac rehab, I believe I started at about 10 watts. I would do 10 minutes at a time. Now I pay more attention to my heart rate than the watts, I would guess I'm doing about 30 watts, but I still do about 10 minutes at a time. It can be very exhausting. I do try to mix in upright exersice though, I found when I don't I get more dizzy spells.
  2. edriscoll, You are very lucky to have the support of your doctors. And I agree its really important, but unfortunately rare to find doctors that are willing to make an extra effort. My doctors were unfortunately not coorprative and I had paperwork that did not get completed as a result. My specialist is Dr. Grubb who has a policy that they will not fill out any disibility forms. I think this is a terrible and tragic policy as he is one of the few doctors in the country that truly understands POTS. I travel half way across the country to see him because I can't find anyone else closer, so the fact that he sends the paperwork back saying give it to your PCP just makes no sense.
  3. Hi everyone. I went through my SS disibility hearing last week. I was incredibly nervous about it beforehand so I thought I'd give you all a summary so that anyone else who has to go through it can have some peace of mind. It really was not that bad and the worrying leading up to it was worse than the actual hearing. Actually this was take two of my hearing, which is a bizarre story. But the take away from hearing number one was be prepared to wait, bring water, crackers, medication whatever you need because it might be a long wait. Also make sure your medication is in the prescription bottle, there is security and they ended up calling the police because my pills were in a pill box not the prescription bottle. That was a bit of extra stress I could have done without. So for the second hearing... I had a lawyer, who was hired on my behalf by the disability insurance I had through my last employer. They took care of all the paperwork leading up to the hearing. And we had a phone prep a couple days before the hearing to go over what to expect and practice a few questions. The hearing is in a room that is more like a conference room than a courtroom. There was me, my lawyer, the judge, a recorder, and a occupational expert. The judge does a brief intro about the case and swears you in. Then my lawyer was asked to give a statement. She clarified some troubles with my paperwork, and then gave a brief summery of my illness. That all takes about 10 minutes. Then the judge starts asking you questions, but its more like a conversation with the judge than anything else. He started with my work history, asking about school, what I studied, and went through each of my jobs and asked what I did and why I left for each. Then he asked me about how my illness started and I explained (I had a very abrupt onset). From there he just asked for more details and follow up questions about my treatment, my life, what I do, how I do it, how long I can do each activity. He was very friendly and it was really like explaining my illness to a friend. It was actually kind of nice because he has to listen to your story and seems to genuinely want to understand what you are going through. The questioning was very natural. For example, he asked what I do on a daily basis and in my answer I mentioned that I volunteer outside the house once a week. He followed up with that by asking me where I volunteered, what I did, how long I stayed. And it was like that for pretty much everything, my exercise routine, my doctors appointments, my medication, the help I've hired around the house. When he is done with the questions my lawyer has an opportunity to ask me follow up questions. So she asked me questions that would clarify things or bring out aspect of my illness that the judge didn't get to hear. For example, the judge didn't ask about the brain fog so she brought that up and asked me to describe it. Then my part was over, all that took about 30 - 45 minutes. Next the judge questions the occupational expert, and you are not supposed to interupt during this part. There is a lot of legal jargon in this part so I didn't follow everything. But basically the judge described my previous job and asks the occupational expert if I could perform that job. He said no, and he offered a few alternative jobs he thought I might be able to do. Then the judge comes up with a senario that more or less describes my current capacity. It was something like imagine a person who can sit for three hours, then needs to lay down for 20 minutes is there a job for such a person. In this case the occupational expert was a bit wishy washy, and there was some discussion about the reasonable amount of breaks on a normal job and wether or not there would be a place to lay down. I think the judge did two different senarios. Then my lawyer was given a chance to ask the occupational expert questions, and she tried to clarify some of the wishy washy stuff. And that was it. The whole thing was about an hour. I was very nervous at the start and stressed the days leading up to it. But after about 10 minutes chatting with the judge I relaxed and just told my story. My lawyer also said that if I needed a break I was free to ask at any time, but I was ok and didn't have any issues. It will take a couple months before I find out the decision, so don't really know how it went. The judge doesn't give any indication what he is thinking. But the important thing is it's not as bad as it sounds, the judges are there to try and understand your illness so they can make an informed decision. Frankly he listened better and asked better questions than most of the doctors I've seen.
  4. I tried it and it helped a lot with the brain fog, but it made my insomnia worse so I stopped. Now I take a very low dose of adderall and I'm happy with it.
  5. I have started seeing Dr. Grubb. There is a local POTS specialist where I live, but he had run out of ideas and I wasn't ready to give up. Dr. Grubb is very knowledgable and up to date on all the latest research. And very willing to experiment, my previous doctor was very timid about new treatments. I have tried several new drugs with him, some help some don't. It is really hard to get a hold of anyone in their office between appointments. I'm glad I started seeing him, but it's not without its headaches. As far as cost and testing, you can call and ask about your specific case. But I needed to get special permission from my insurance company and doctor to cover costs. He has never ordered any tests because I've had an extensive work up, but I did ask about that before my first appointment. They prefer you do them at home if possible.
  6. I also had sudden onset POTS that started in April 2011. My progress has been slow but steady. I was basically bedridden and now I can walk about 2 mile on a good day. My doctor is a POTS specialist and has told me that the majority of people that have "true POTS" get completely better. According to his definition "true POTS" is POTS and only POTS no other underlying conditions. Many people have postural tachycardia do to some other underlying condition and he would not consider these people POTS patients. They are still not 100% sure if I have POTS and only POTS, as I have some symptoms that they don't consider textbook and I haven't responded to medication like typical POTS patients.
  7. I see him and I have been a subject in some of his research. Bella what cardiologist do you see? I have a second appointment with mine at the end of the month, but so far I'm kind of eh about her.
  8. Where are you planning to donate the money? I am planning to donate to the hospital that has been treating me. They have a POTS research program there and I have participated in a few of their studies. I don't know if thats the best place though. Also I was going to use one of these websites that allow you to set up personal donation pages. There are so many though, its kind of overwhelming. If anyone has experience using those websites and can suggest a good one that would be helpful.
  9. Hi I'm planning on organizing a walk this spring, but just for friends and family. I would love to compare notes if you want to. Sarah
  10. I just finished cardiac rehab and insurance payed for it. I was their first POTS patient, but they talked to my doctors before I started. They were very good to me, it was a great experience. It is in a class so the program is somewhat fixed, but they adapted to my needs as much as possible. They were great to work with and helped me experiment to find out what I could tolerate. They also pushed me to get comfortable so I could continue on my own in a gym. I did one session, but they felt I wasn't ready to graduate so my insurance approved a second session. I eventually decided I needed more flexibility in my exercise program so I didn't use all the approved sessions. It helped me a lot to build back the strength I had lost. I was still using a cane when I started now I'm not. They also help you find your limits and listen to your body. So its especially helpful if you are nervous about starting to exercise. I am very happy I did it.
  11. Hi and welcome to the forum. I have had a lot of trouble sleeping as well, and it has been improving as my health improves. I found that having a fan on helps with the sweating tremendously. Not just during sleep, I used to take a small fan with me everywhere I went. Have you tried melatonin? It is an over the counter supplement found with the vitamins. You take it a couple hours before going to bed. It worked great for me unfortunately I would feel really groggy for a day after taking it, so I only do it when I am desperate for a good night sleep. Also start with a small amount like 1mg.
  12. I updated to add the resting heart rate. I am actually kind of shocked how low most peoples standing heart rates are. I wasn't expecting that. Are those of you below 100 on medication? I am on two meds right now and my standing heart rate is still around 100.
  13. I know we all have good days and bad days. But on an average day what is your typical standing heart rate?
  14. I had the same problem and tried about 4 different ones before I found one that would work on me. Its made by Panasonic.
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