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mully2014

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About mully2014

  • Rank
    Advanced Member
  • Birthday 10/19/1995

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  • Gender
    Female
  • Location
    Wisconsin

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  1. I will even have breathing issues while I am passed out and come to. I have O2 readings that are low or not in the normal range during some of these times and even occasionally when doing orthostatic checks at my doctors appointments. More often now do I have problems getting enough O2 and my eyes will even get extremly bloodshot looking when O2 levels are not good.
  2. I just got a puppy and have been training it to be a service dog. He is 14 weeks old and I can take him anywhere I want already!!! Make sure that you get to keep the dog and you are the one to train it not other people so the dog makes the bond to you. If you have any questions message me!
  3. I am part of a planning committee for a run/walk at my school for another disability. Let me know if you want any info or help based off what we are doing. Along with the run/walk we also have a pancake breakfast thing, silent auction, etc. I wasn't at the school when they did it the first time but it was a huge success then and is expected to be a big hit again.
  4. Wow that is an insanely short TTT. I've had two and they were about 30mins and 45mins each!
  5. With any drug you can get new side effects with an increase in dosage. I have this happen to me a lot and sometimes when I go down from the increased dose I will still have the problems I got at the increase.
  6. My sister is on Florinef .1mg she is 13 and is MANAGED very well on it!!!!! She doesn't have any side effects on it either. I am also on florinef and have been for a couple of years. I am extremely sensitive to meds but I didn't have any side effects from florinef. I am currently on .3mg but have been on .4mg before. When I started out I was on .1mg. I hope this really helps you!!!
  7. Wow thanks everyone!!! Sounds like I got lots to try
  8. I get really bad muscle tension that seems to be related to my conditions. Does anyone else have this problem if so what do you do to help? I have done massage and chiropractor but it adds up especially when it doesn't hold/help for very long (on average only 24hours) and just started up with manipulation and physical therapy. I'm hoping to feel better especially when I will have to sit all day long at school in a wheelchair.
  9. Lauren's Hope is where I ordered mine from it holds up really well and you can have different bands that hold the alert part. All my friends and family comment on it and love it. I like that it looks like jewelry and can get a starting point for anyone that would be around me when I pass out. I put my name, conditions (NCS: syncope : fainting, P.O.T.S.) then allergies, and a contact number for a family member. I had fainting put on the alert so anyone would be able to understand that it was I medical condition and it was a normal thing for me. I didn't include meds because they are constantly changing. For me the medical alert bracelet became even more important after I had mutiple concussions and ended up losing my memory.
  10. FLorinef is a great med to start out with if you are worried about side effects. My sister is on florinef and she is managed very well! I hope you can start feeling better soon I would give meds a shot though if your doctors are recommending it. You never know what might help you or get you managed its different for each of us.
  11. I have an IEP and 504 plan but they still seem to mess things up! I got another meeting for my IEP tomorrow so I hope it goes well.
  12. Thanks for the thoughts Alyssa I will keep that all in mind!
  13. Makes me smile to think of getting better!
  14. Soooo happy to hear this it gives me even more hope!!!
  15. Oh I hope that your family can be supportive of whatever you decide. A wheelchair can be nice for events every once in a while and can help with symptoms.
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