erickamcc0523

I'm personally not a member of the Opus myself, but two dear friends of mine (and wonderful prayer warriors.. I'm glad to have them on my side! ) are. One is a member, and the other is her spiritual directee. I have been reading "The Way, Furrow, and The Forge" for Lent, and while some passages are very difficult to hear, they have been very helpful... perhaps the most difficult passages end up being the most helpful. You're right, it has been very difficult keeping faith since my diagnoses, and half of the times I don't even want to go to Mass on Sundays, but it is only through the grace of God that I keep going. It is His grace that has helped me to realize and truly understand the difference in being loving and feeling loving, and being faithful and feeling faithful. I'm certainly not feeling loving and faithful right now, but I'm not too terribly concerned about my lack of feelings, and each Sunday morning, if I am physically able, I get up and pretty much drag myself to Mass. When I first experienced this, I talked to my spiritual director about it, and he mentioned that just as many graces were given to someone who didn't feel like going to Mass as someone who was very excited and happy to be there, and perhaps even more because it was a greater act of love. Perhaps that is the truth, because if I had been diagnosed with these two life-altering illnesses back when I was the "angry atheist" (either I didn't believe in God, or I was so angry at Him that I didn't care), I would have quickly sunk deep into the quicksand of despair. Not to say that I don't touch it from time to time, but I do believe that I would be so much worse off then than I am now. Another favorite quote of mine (unfortunately brain fog is making me have to paraphrase it) is from St. Teresa of Avila, about how Christ gives the gift of suffering to His closest friends. In even attempting to view these maladies as a gift, and as a way that I can draw closer to Christ has made them not so difficult to deal with. But you said it! Definitely a mystery!

Yeah, it's very difficult to deal with some people... I'm sorry that you all have your own sources of grief to deal with; I also know everyone's pain--all too well, unfortunately. I have only told one friend and my cardiologist about DINET. They both are very supportive about me being here. My friend is because being pretty much completely healthy himself, he doesn't really understand (although he is as supportive and sympathetic as he can be) and is glad that I am connected with others who do understand quite well. My cardiologist is because, even though he has about 10 other POTS patients, he proclaims his ignorance about treating POTS, and is supportive for me to try anything (well... not prescriptions unless he prescribes them, but anything OTC or involving my diet) that will help control my symptoms. I think he is almost as frustrated with POTS as we all are, and he wishes that there was more he could do. My parents... well, they are a completely other story. My dad was exposed to Agent Orange when he was a soldier in Vietnam and has since developed heart disease, Type 2 diabetes, and most recently, kidney disease. He has been having difficulties with his cognitive function (even more than what I have most of the times) so I am very patient with most of his questions ("So, you're cured now?" or "When are you going to get better?" or "Why are you taking that medicine/putting that much salt on your food/drinking that much water?") and the fact that he repeats himself much of the time, since he repeats himself and asks the same question again and again all of the time, not always related to my illnesses. My mother is, at times, purposely (at least I feel so) dense and uncaring. When I am having presyncope and I have to sit down or recline instead of actually "doing something" (I am... I'm trying not to faint!), she'll yell at me for being lazy. When I try to tell her exactly how bad I'm feeling, either with the POTS or the JHS because I've just dislocated something, her eyes glaze over, and I can tell she's tuning me out. I'm actually somewhat glad that she had an allergic reaction to something last week and had to get a steroid shot and a medrol pack, because she has been having dizzy spells, hot flashes, tremulousness... basically a medically induced POTS, without the orthostatic tachycardia. I've told her a few times that is how I feel every single day, and she doesn't seem to get it, yet, but I haven't been told how lazy I am since I told her I feel like I'm continuously on steroids, so there is some progress, I hope. Most of the people that attend school with me don't really know about the POTS. I don't normally feel like explaining exactly what POTS is, so I just mention that I have a heart condition. I have told my professors, so if I do have to miss a class, they make sure that either someone takes notes for me, or they will give me a brief lecture outside of class (thank God that I am taking two "easy" classes... Cultural Anthropology and Music Appreciation). The very few classmates that do know also have health problems of their own, so we have formed an unofficial support group. One of these people is an older gentleman who has Congestive Heart Failure, and he has been a really great source of support as well. When I have to use a cane (he has to have one most of the time), we'll compare our canes and give each other tips on how to use them, along with sharing funny stories about being "gimps". I have been trying very hard to react with charity and patience towards people, especially my mother. I'm not quite there yet, but I think that I'm better than in times past. One of my favorite quotes in regards to dealing with difficult people is from St. Josemaria Escriva: "Don't think 'those people bother me'. Think 'those people sanctify me'."

I have heard of people drinking aloe vera juice to help... lubricate things and get them moving better. I haven't tried it myself (yet), but I have seen it next to the other bm "helpers"... I might try it soon.

I had my first treatment this past Thursday. For the most part, it wasn't unpleasant (well, the mugwort she used was a bit difficult for me to tolerate, but I've been very sensitive to smells lately), but there was one particular needle that must have been on a hotspot, as it hurt the whole time. I haven't noticed a decrease in pain yet, but I know that it will take a few treatments to cause a reduction in pain. I have been sleeping alot more lately, but I think that may have more to do with the fact that the last 3 days before my treatment, I slept only 4-5 hours. Unfortunately, I haven't slept early, and I have slept until at least noon the past few days.

I get this sometimes... it does feel like hypoglycemia, but I've checked my blood sugar a few times when it's happened, and it's normal. But, eating something with a mixture of complex and simple carbs (like a granola bar with chocolate) will help the symptoms.

That is very interesting! I just realized that I do that as well, and like you, my hip really hurts most of the times, but the JHS and frequent dislocations don't help with that. Also, if I keep tensing my calf and thigh muscles it does help... basically 5 seconds tensing and 5 seconds relaxed. I guess that both methods help to push the blood back to the heart and the rest of the body.

I don't know what to say right now, except that I am praying for you, and for the doctors to figure out what is going on.

[rant] I might just scream if I see one more commercial about how so hard it is to handle something like acne, sensitive teeth, or some other minor annoyance!!!! And I have both problems with my skin and have to eat most things around room temperature! If those were the worst things wrong with me, I would be THRILLED!! [/rant] Ok, with all of that said, much of this, I suppose, is a matter of perspective... that someone who has great health, I suppose than can feel like they're dying from a simple cold. Since I feel like I have the flu every day, when I do get a cold, it isn't that big of a deal in comparison. And some people (like my mom) has such a low tolerance to pain (she stubs her toe and is on the ground in a fetal position for at least 10 minutes) that if they were to have a joint dislocation, they have to go to the hospital and be given much sedation and pain medicine for it to be reduced... I dislocate a joint and well, it does hurt, but it barely registers above a 7 on my pain scale... I live with a 5 on average most days, so nothing that I can't handle to reduce myself. I guess I'm starting to get that maybe I have it pretty good... my tolerance to many things is pretty high, and I am able to handle it much better than most... Of course, if it's too cold or too hot or I have to stand for too long, I'm not so great, but I guess that it's a trade off for being able to deal with the tiredness and pain and feeling sick for so long. I do include you in those last few sentences. I am constantly amazed by you all... in spite of hardships and dealing with so much on a day to day basis, you all keep going, one foot in front of the other.... Pats on the backs for everyone!! I wish that I wasn't having such brain fog... it's taken me almost 45 minutes to write this message... I hope you all understand what I'm trying to say. I'm very blessed to know you all!

On the "What Helps" part of dinet.org, ibuprofen is listed. It helps the lowering of bp after eating by blocking a specific prostaglandin, which, depending on the type, controls either contraction or relaxation of vascular smooth muscle scales.

I am unsure of any real connection... I'm just adding that I started having gallbladder attacks at age 15, which went undiagnosed (since I had no stones... just a non-working gallbladder) until 2 weeks before it was removed when I was 20. It was diagnosed with a HIDA scan.

I am having my first session on Thursday... mainly for the chronic pain from the joint hypermobility, but I am hoping that being able to sleep better will be a result. I'll let you all know!

*raises hand* ME TOO, ME TOO!!! Oh, it's frustrating and frightening all at the same time! I haven't noticed a pattern, and now that I think about it, I haven't had any difficulty swallowing in a few months... but I've had longer respites from it before... I'm just praying it won't come back. Mine were more that the muscle around me epiglottis was trying to push down, and the one right underneath it was trying to push up against the other muscle... and stuff (even just a sip of water or saliva) would just get passed back and forth for a few minutes before either the top muscle won or the bottom one did and I would end up vomiting. In any case, it's not FUN at all, and like I mentioned, quite frightening. There have also been some cases where it feels like my epiglottis is paralyzed almost, and when I went to swallow, everything dumped into my trachea (or even lower). I've had a few moments where I can predict that one coming, but usually it's a spit-second before I try to swallow.

I think I understand what you're saying... there's a reason for the tachy, so if it is treated, then the symptoms might worsen instead of get better? Is that right? And as for me, I do feel better somewhat with the tachy under control. I don't get the head pressure symptom so much, and I haven't had as many headaches since I've started on the Toporol. I do still have issues with light-headedness and I still am just as tired all the time (perhaps just a touch more), but trading off the headaches is worth being a bit more tired for me... YMMV, however. In some cases, the tachy is caused as the body's reaction to a drop in BP, so in those cases it may be better to raise the BP, as that will most likely automatically cause the pulse to slow down. However, for me, my BP stays about the same both sitting and standing, so raising my BP isn't a good, or even healthy thing.

Thanks for the pat on the back! I have had a few physically rough days and it was much needed! I did go to church yesterday (I guess now, day before yesterday... darned insomnia!), but was shaking the WHOLE time, and I was very worried about being able to even make the drive back home. I could have sat for the whole time, but I guess I'm too darned stubborn for my own good, so I kept up as best as I could with the whole Catholic calisthenics... and I do the advanced calisthenics (I attend an Extraordinary Form Mass, which has about double the standing and kneeling of a regular Mass, and is about 1:30:00 long). I came home, and promptly went to bed and didn't wake up until 8:00 am the next morning.

What surgery, do you know, did he have? I'll bring it up to my GI doc at my next appointment.

I don't currently take Gaviscon right now, but I'll check it out the next time I'm at the pharmacist. I do take a daily Nexium and Prevacid along with Maalox if I do have breakthrough heartburn. Thank you so much for the prayers and kind words.... You're right, I am glad that I know now so I can take steps to prevent further damage.... I guess my initial reaction was one of "Oh crap, not again!" I am almost afraid of going to the doctor right now, as I'm afraid that I'm going to get a new diagnosis... but that's not such a bad thing. It's somewhat overwhelming to be diagnosed with 3 diseases since Jan. 8th. Thanks in part to your prayers and kind words, it's not so much right now.

Thanks for posting the link! There was a write-up about the same young man this past Tuesday in the Washington Post. I'm glad to see more coverage and information about POTS out there!

So, the results of my esophagus biopsy came back today (after an endoscope 10 or so days ago), and I have Barrett's esophagus... I certainly don't fit the demographics of Barrett's patients, as I'm female and 23 years old and most who have it are middle-aged males. I was wondering if anyone else had it, especially someone who doesn't fit the normal demographics of a Barrett's patient, and if possibly there could be a connection? I know that severe GERD is a significant risk factor of developing Barrett's esophagus, and that POTS and hypermobility syndrome has significantly higher incidents of GERD than with the normal population, but does anyone know of other reasons why I might have developed this? I'm somewhat scared about this diagnosis as I know I have a higher risk of esophageal cancer than the rest of the general population... perhaps not a very big risk, but the longer someone has BE the higher the risk of developing cancer... and I have at least a 20 year head start. Sometimes I really do believe that ignorance is bliss!!!

I think that we're doing the Hallelujah Chorus this year too (but even if we don't, we're still doing the full Gregorian antiphons and sequences for both Palm Sunday and Easter)!!! It's one of my favorite pieces that I'm not even mad that I have to sing alto (what do you call a soprano who can read music? An alto ). I love harmony alot, but I love the..... whatever that is indescribable about Gregorian Chant. I can't even begin to explain how Gregorian Chant affects me, but I truly feel as if I have an encounter with the Divine every time I hear it, and I feel beyond blessed that there is a Gregorian Chant schola (actually, there are two... I don't have the energy to sing with the other one) so close to where I live. It would be very difficult to attend Mass and not be able to sing... there have been a few times that I actually haven't been able to sing, and I have to say that I had very much to offer up. Singing has been a part of my life for so long (I started my first voice lesson when I was 9 years old) that I have had difficulty accepting that I can't do it as much as I could before the POTS really flared up after my surgery this past November.

Seriously identify with the inability to build up endurance. After a few times of trying to build endurance throughout the years by starting an exercise routine (before POTS diagnosis, and even before it was really set off before this surgery in November), after about day 4-5, I got to where it was almost impossible to even hold up my head. Even pushing myself just a little bit too much (for normal people it wouldn't even register with them) will cause a flareup that knocks me on my butt for a few days.

I really have no idea of how to relieve it, but I just wanted to tell you I feel your pain!! When I get it, I can't even breathe properly since it hurts so bad (think rapid and shallow breaths). Normally it only comes when I am very constipated but it's a precursor to an attack of diarrhea, but like with you, it can take at least a week before things get "moving" again. I will take something that helps things get moving, which after a few days will help with the pain.

I LOVE CHOIR!!!!! I currently sing with a Gregorian Chant schola (and occasionally fill in with directing if the choir director can't make it), which is quite different that what I used to sing in other choirs, but I LOVE it. I have been in school choirs, church choirs, and even in a community choir that was associated with a local university. I now have alot of difficulty singing without inviting chest pains and a huge headache, not to mention the fact that I feel like I'm about to faint when I do, but I do sit down when I need to, and the only person to say anything is a choir member who has issues with CFS and fibro (and various other illnesses) and has an idea of how I feel, and that's only to see if I'm getting ready to faint. We don't do so much with harmony, as Gregorian Chant is monophonic, but every once in awhile we'll do some Palestrina or Morales or other polophony, and wow!!! What goosebumps I get!

It's great to have a doctor who realizes that first he is human, and is humble enough to admit his shortcomings. He didn't mention adding extra fluids and salt at my inital appointment, but when I mentioned that I have been doing so as suggested by others with POTS, he was very supportive as long as I don't dilute my electrolytes too much (I showed him the electrolyte tablets I bought, which lessened his concern). It's great that I don't have to fight to be believed, as I have had to with other doctors in the past. In fact, I get the feeling that he thinks of POTS even more seriously than I do (and I'm the one that has to live with it). I was kind of anxious about this appointment, only the second one I've had with him, I suppose because I was expecting the other shoe to drop in being called "psychosomatic", but those anxieties were very unwarrented. He seems to understand what a doctor is... a teacher (doctor is from the Latin word for teacher), and to be a teacher, one must first learn what they are to teach.

I'm glad that you have such wonderful and understanding doctors in your corner... I know you must be stressed with the rest of the health issues, so it's great that you don't have the added stressor of having uncaring doctors. I will be praying for you!

1- Not so much my head, but around my stomach and under my breasts, especially, I radiate alot of heat, which isn't a horrible thing because it can warm up my hands pretty quickly (thank God for baggy sweaters!). Perhaps, with your body slowing down at night to enter sleep, the reduced blood flow is causing it to become very cold? I'm not sure, but at night my hot spots are pretty cold usually. 2- Yes!! And I also have excessive sweating when they get like that, too, which is strange because I normally don't sweat too much (except my underarms, but that's another thread). I have been meaning to buy some neoprine sock liners to wear in addition to my socks to hopefully wick away some of the moisture, because that seems to exaserbate the problems. 3 & 4-I become a heat making machine when I am stimulated in any way! I would love to get in front of a thermal camera when I'm like that just to see the changes. My neck is always like that, though, but I think that's because of the hypermobility syndrome (and suspected EDS). 5-I don't think that Dysautonomia itself can attack muscles and joints, but if the dysautonomia is caused by something like EDS or another hypermobility syndrome, then the deteriorating joints and ligaments could be a cause of that. Ditto to Janey, especially if you have hypermobile joints, you should be checked for EDS. 6- Last night, I ended up laying across my bed, with my legs all splayed out... I was halfway on my side (my upper body) and on my back (lower body). I also grind my teeth in my sleep, which causes alot of jaw and neck tension. Perhaps you should be checked out for nocturnal bruxism, and even be fitted for a mouth guard to help with the symptoms. I have woken up from grinding my teeth so much that it's dislocated. Doesn't hurt so much, more uncomfortable than anything, but it's annoying to have to wake up to reduce that dislocation. The tension in my jaw muscles will go down to my neck muscles, and sometimes even into my shoulders, causing HUGE knots. When my dentist was examining me for TMJ, there was a spot on the right side of my neck that he touched that nearly brought me out of the chair. 7- Again, the same thing here... Mine is normally more present with my colon, either I'm constipated or I have severe diarhea... but there are times that everything I eat feels like it's just sitting on my stomach, sometimes for hours afterwards, and I hardly eat. Then other times, I can't keep myself fed enough, and I have to eat all day just to keep my blood sugar up (I get reactive hypoglycemia at times, too). Luckily my blood preassure is normally about the same (with only a 10 point difference either way in the top number and a 5 point either way in the bottom number), but I will get either bradycardic (especially since I've been put on a beta-blocker) or tachycardic. Again, like with you, it feels like there is no balance at all, and my body is subject to my autonomic system's whims!