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erickamcc0523

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About erickamcc0523

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    Advanced Member
  • Birthday 05/23/1986

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    http://myjourneywithpots.blogspot.com/
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  • Gender
    Female
  • Location
    Tennessee
  • Interests
    Singing, playing organ (well, any music, especially when I am with the Latin Mass Schola of which I am a member)... reading, especially works like "Summa Theologica" and writings of the Saints. I am currently in school as a vocal performance major, but that's only because my little community college doesn't have a major (or minor, even) for a choir director, which is my ultimate dream job.

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  1. Has anyone ever mentioned how flexible you are? If so, I would investigate the possibility of Ehlers-danlos syndrome, a connective tissue defect that is one of the more common causes of POTS. Joint dislocation (feeling like they're "going out of place") is one of the symptoms, along with joint pain, and other issues.
  2. I have been gluten free since January, and while I still have POTS (and sometimes, even bad enough symptoms to go to the ER with), I can tell there is a difference in how much my pulse and bp fluctuates... Them fluctuating is the first sign I have when I'm glutened. I never really ate that much bread or pasta, so I just completely cut those from my diet. As carbs seriously inflame my joints, I usually stay under 50 grams a day... The one thing I've noticed is that I don't have as much problem of holding onto water since I've gone gluten-free. My neuro supposes that's because my body isn't t
  3. How in the heck do you keep the thigh-hi stockings up? I just got a pair yesterday, and they help with the air hunger I get quite often. My heart rate on average has dropped a bit, too, but I can't handle them rolling down all of the time!
  4. So, it's been a bit unseasonably warm here (mid-90's with humidity about the same, so heat index of at least 100), but normally if it's hot early in the summer here, it will be especially horrible later in the summer. I'm already dying right now, and I've nearly fainted at least 6 times in about at 15 minute span just being outside in the heat. My feet especially will swell up and turn some interesting shades of red and purple. I used to hate the cold in the winter, but since my surgery this past Nov that set off the POTS, I can see that now winter will be the preferred season for me as it'
  5. The most common one is psychosomatic, but I've also been dx'ed as bipolar (rapid cycling and very uncontrolled even with meds), anemia, migraines, anxiety, *JUST* GERD (and not gastritis and Barrett's Esophagus along with that), runner's knee (when I was 10, and I didn't even run back then since I got lightheaded)... I was also diagnosed and treated wrong for patellar subluxations (I had a lateral retinacular tendon release... my only non-stretchy tendon in my knee, so know they're even more messed up before the surgery), which has made the POTS worse. I had my last knee surgery Nov 09, and w
  6. Oh yes, especially when I stand up. What ***** is when I'm having them when I'm trying to practice organ or piano. My fingers almost lock up and don't want to function. I hope that I'm able to learn how to play bagpipe (something I've ALWAYS wanted to do since I was 8) in spite of this.
  7. I can always tell when it's going to storm... I'm actually more accurate than the weatherman. I have a worsening of POTS symptoms, and I also have a knee and a hip that is very accurate at predicting the weather (OUCH!). I also know when the barometric pressure is changing, as that's what ultimately causes the majority of my symptoms.
  8. Good luck! I hope your appointment goes very well and you end up with an awesome doctor! Now, for my word... discombobulated. Although I must not be that much so (right now at least), since I could think of the word in the first place.
  9. Eating is a very big struggle for me. At times I can't even eat a bite as just the thought invokes such horrible feelings (I am also recovering from an eating disorder, with no huge relapses the past 2 years, although that is a daily struggle). Other times, I can't stop eating, especially those things that are so bad for me. Thank God it's been over 3 years since I've "compensated" for a binging episode, though. This is all mixed in with stomach problems (5 years of undiagnosed gallbladder attacks and nausea even after it was taken out, GERD...), so I can say that eating is easily one of t
  10. I too am worst symptom-wise about 4 days before my period until about day 2-3. I usually have the fewest symptoms right after ovulation until the 4th day before my cycle starts. I have been learning about NFP (Natural Family Planning, basically fertility charting), mainly the sympto method (I've been checking cervical mucus, although one could check temperatures and cervical placement for more accuracy as far as avoiding pregnancy, but since I'm single and have no chance of becoming pregnant, I don't need that much accuracy), and it's been a very fascinating process learning about what my bo
  11. It wasn't so much bravery as it was desperation that allowed me to get the injections. Like I said in a previous post, it wasn't until the pain and numbness shooting down my arms began affecting my piano and organ playing did I actually seek help with it. I am in the process of making an appointment with Dr. F (she has ALOT of paperwork to fill out before even the first appointment, and my hands are hurting too much lately to even write, so I think that I might just type everything out). It's also a long distance, and I don't do well with either long road trips or plane rides (perhaps a 3 ho
  12. I must also chime in and say that it doesn't seem to me either that you are in need of a psychiatrist. I will, like everyone else, say that dealing with chronic debilitating illnesses can be very difficult at times, and that it's great to have someone at least somewhat objective to vent to. I have a spiritual director (the same one I saw when I was discerning a vocation, not that I've completely counted that out, but for right now, I need to get a better handle on how to deal with these illnesses if I am ever to be able to live in a convent). He's very kind, understanding, uses alot of hum
  13. Thank you guys for your well wishes. Initially, it was very difficult, but later yesterday evening (after a POTS crash, however) and today, everything has been feeling about as pain free as it has in a long time. My trapezii are still in a spasm, but I have already been told that I might have to get pain blocks directly into the muscles since they have been spasmed for so long (for at least 3 years... Bad treatment from other medical professionals caused me to just not even mention my neck pain until it became extremely unbearable and it started shooting down into my hands and it prevented m
  14. It's funny you should mention Gesthemani. One of my close friends is discerning entering there as a monk. My personal favorite convent is Our Lady of the Angels in Crozet, Va, a Trappistine convent. I stayed there for a week last summer (before the POTS-worsening knee surgery), and since I was discerning, they let me help them with their cheese making, and I have to say that was just a wonderfully prayerful week. And it's funny that I should have mentioned taking a retreat yesterday, since today I received an e-mail from the vocations director of Our Lady. If I were to call it a coincidenc
  15. Elfie, I can truly understand where you are coming from. I have had POTS symptoms since I can remember, but after a surgery in Nov 09, everything has gone haywire. I am, too, a student... I took a semester break after my first year of college that ended up being 4 years long, a very big regret, but at least now I'm more focused, or am attempting to be as much as the brain fog will let me, in classes, and I have a purpose. I am a music major (I want a degree in Sacred Music, specializing in Gregorian Chant), and what kills me is that I change my major about a month before my surgery. I took
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