Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by trice125

  1. My doctor does not require any blood tests prior to infusions. Currently I have an standing order for 1 liter every 2 weeks but this might change after I see my cardiologist on Tuesday.
  2. I went to a really small private college where all of the professors knew me and knew about my illness. They worked with me and I also lived at home after unsuccessfully trying to live in the dorms. I took the minimum amount of classes that I could to be full time because I could not stay on my mom's health insurance if I wasn't a full time student. My symptoms have gotten worse with time so I ended up having a harder time as I went through college until I was begging my mom to let me quit/drop out when I was student teaching. At that time she didn't let me drop out since I was so close to graduating but now I have all of these student loans and can't use my degree. After graduating I only taught at a preschool full time for less than a year before having to stop working completely because my symptoms have gotten too severe. Feel free to ask me any questions you may have either by posting on this topic or sending me a message.
  3. I see the surgeon in the morning to discuss getting the port. Are there any particular questions I should ask him?
  4. Thanks Chaos. I raised my concern about infection risk to my doctor and he told me that the risk is there but it's more risky to no do anything. I have an consult appointment with a general surgeon that I've seen in the past and my doctor told me that I can talk in detail with him about the risks/benefits of getting a port which I plan to do.
  5. Does anyone on this board get scheduled IV fluids? If so, what has been your experience with them and have they made any difference for you? Also, anyone got a port placed to get them through? Due to have really bad veins my electrophysiologist has suggested a port and that I start off getting IV fluids once a month increasing as needed. FYI- we have test results that I have really low blood volume and more conservative measures have not helped, if anything I am only getting worse.
  6. I've been on the nuvaring for the last 18 months and it has seemed to help. My GYN and GI doctors pretty much told me that it was my only option due to me also having gastroparesis especially since I do go thur periods of time when I have trouble keep meds down. It has greatly lightened my periods, lessened my symptoms during that week, and made them less painful. I do still get set back each month but not as much.
  7. Anyone else on this forum fight against with regular headaches? If so, have you found anything that helps them?
  8. I can understand a lot of medical jargon but not this article. It just confused me and I take magnesium for constipation daily.
  9. Pain, cramping, constipation, bloating, nausea, vomiting, reflux, heartburn..........................
  10. Sounds like overactive bladder to me..........or a symptom of diabetes if that hasn't been ruled out yet.
  11. I also have a college degree and am only 27 I got told the same thing by multiple lawyers. I finally did get approved a year ago after finding a wonderful lawyer that went out of his way to help me. He worked out of an office with one other lawyer and a secretary but I could call or email him directly anytime I wanted to or needed to. I truly don't believe I would have got approved if I did not find such a good lawyer since there is such a negative view of sick young adults especially ones that are educated. Good luck and feel free to send me a message if you would like to.
  12. I've had this problem before and my GI told me that it's caused by reflux.
  13. I'm not sure about NYC but where I live (Kentucky) a lot of churches have set up senior independent living apartment centers that the rent is only 1/4 of your income. A family friend who is in her 70's lives in one in my hometown and she gets free monthly commodities, on-site laundry along with all kinds of free but great benefits plus the apartments are pretty small so there's less upkeep. I would also suggest reapplying for disability and looking into getting food stamps. Kinda understand where you are coming from too although I'm 27 and only worked full time for a year. I still live at home with my parents with not end of that situation in site. All of my money from social security (a whole $600 after Medicare takes their portion out) goes to medical expenses or student loans which ***** especially because unless things dramatically change I won't be able to use my degree. I haven't had much luck with doctors helping with my symptoms either even though they continue to get worse.
  14. Get a new primary care doctor that is actually helpful.........I stuck with my old one way too long and can't believe the difference between my old one and my current one. Other than that I don't know what else to tell you, sorry.
  15. E Soskis- I'm with you about the traveling thing. My symptoms have been flared up since we last went to the Cleveland Clinic in the middle of June plus I threw up all the way home which was over seven hours in rush hour traffic.
  16. I've been to Cleveland Clinic twice but I didn't find them very helpful. I have a local cardiac electrophysiologist but besides keeping an eye on my heat he's not too helpful on any other of my symptoms. Last week I saw a neurologist that he referred me to which told me that after he reviewed my records he could refer me to someone else that specializes in this area which most likely would involve traveling again but he wouldn't be any help to me himself. I have an awesome primary care doctor but she knows this is way out of her knowledge so she isn't much help either. My body and my checking account can't tolerate traveling several days just for a doctor's appointment but I also need a doctor who addresses these autonomic issues. So long story short, Do you travel to specialist all of the time or do you have local doctors that take care of things?
  17. I have but didn't find them very helpful. PM me if you have specific questions.
  18. Yes, I get them all over but they are especially bad in my back.
  19. My GYN and GI highly suggest the nuvaring.
  • Create New...