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KristaKupcake

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About KristaKupcake

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  1. It is probably one of the most frustrating parts of my job. I am often the first person to do any type of exam on a patient - physical or diagnostic. Doctors really need to trust their gut and still rely on their skills but they just want to send people off to diagnostic imaging instead! Ugh. I do Ultrasound examinations specifically but I work closely with X-ray, CT and Nuclear Medicine. I do not deal much with MRI.
  2. Oh goodness that is bad timing for sure :(. At least you have a contingency plan if things don’t go well. I really hope you get some relief from your flare symptoms soon. I hope it helps to know you aren’t alone and there is a community of people here to chat / vent to :). POTS is an awful disease that has no rhyme or reasoning. Hopefully your little one will be well behaved for you (as well behaved as a 3 year old can be haha). *hugs*
  3. It makes it so much worse when you have to care for others as well as yourself when you are feeling so unwell. Having a child and being a mom is hard enough - let alone having POTS symptoms / flare. Having the fluids and salt will help you from getting worse I hope. If you aren’t able to be upright much just make sure to keep moving your legs / wiggle toes to keep the circulation goes. Just baby steps and little things you can do when you aren’t able to do much. Do you have a close friend or family member that could help you out while your hubby is away?
  4. Hi Aida! I am happy to hear that you can return to work :). I work at 2 hospitals here as an ultrasonographer (ultrasound technologist) and I was off work for about 4 months while I was struggling with (presumed) POTS. I completely understand the feeling desperate. I was feeling like I was a burden and useless while being home and not able to work. I didn’t have a sense of purpose. Our return to work program is really great through occupational health so I very gradually increase the amount of days and hours of work. I started at 4 hour shifts 3 days a week and progressed weekly from there until I reached 8 hour days 5 days a week. Yesterday was my first day back to full time! I always wear my compression socks - this definitely helps with my circulation and edema. I always have my water bottle near by too. I bring a 1 litre glass water bottle with me and I make sure to finish it during my shift. We do a combination of sitting, standing and walking which also helps to keep me moving but also gives me tome to rest. I find keeping my brain engaged distracts me from my symptoms. I always have lots of little snacks packed in my bag too in case I need a bite to eat quickly. Wishing you the best of luck! 😊
  5. It sounds like you could be in a flare right now for sure - especially when the usual treatments aren’t helping you out :(. I wonder if having more IV fluids would be more beneficial to you? I’m sorry you are going through this right now. I hope you can take things easy so as to not injure yourself again. *hugs*
  6. I’ve had MANY CT scans in my lifetime (at least 11-12) because I had cancer at age 20. I’ve also had a number of Nuclear Medicine tests and X-rays. I have had 3 CT’s alone since September and I know I will need another CT again soon to check if my blood clots have dissolved in my lungs. That being said, I’m not too concerned about the radiation. I am a cancer survivor and I still do not really worry. Is it more radiation than an X-ray? Yes. Should you be worried? Not necessarily. I work in radiology and we limit radiation exposure to younger patients but we still do a CT if it is medically necessary. There are also shields they can use to protect your thyroid, breast and reproductive organs. You can ask to have these on during a CT. It is true that every CT you have does increase your risk of developing cancer by a small amount (I think 0.011% if I remember correctly). However, you would have to repeatedly get CT scans over time to truly be at risk of developing a cancer. I think as patients we need to use our commen sense: if the CT is for something serious like pulmonary embolism, stroke, aneurysm / active bleeding, etc then the benefits ALWAYS outweigh the risk. Things like minor aches and pains really should be investigated via imaging that does not use radiation (ie. ultrasound) or be investigated clinically (no imaging). Blood work, urine samples and a good physical exam can give physicians a really good idea of what is going on (most of the time). Unfortunately the problem with improving medical technology is that many doctors want to replace old-fashioned physical exams with having diagnostic imaging tests instead. This is NOT reasonable nor a safe thing to do. I see it happening in my line of work and it is not okay. If you have a doctor that orders diagnostic imaging tests for every little ache, pain or complaint then you really SHOULD question it. Ask yourself: is it really worth it? Are my symptoms bad enough that I would risk a small amount of radiation to get an answer? As a patient it is your right to refuse any exam you are not comfortable with. 👍🏻 Sorry this is so long - I’m just passionate about health care 😊.
  7. I’ve just recently been diagnosed with bilateral PE’s (September). I’m on Xarelto to help dissolve them. I’m curious about APS - there is a history of blood clots on my mom’s side of the family (my grandmother died from one) and my mom has fibromyalgia. I may ask the hematology team next time I see them 👍🏻.
  8. I had the Mirena for 5.5 years but now I actually have the newer, smaller IUD. It has less hormones than the Mirena - it is called the Kyleena. I’m loving it so far! Aside from the obvious pain of getting it inserted, it has worked great and my body is used to it now. I have noticed I experience slightly more symptoms now with my cycle because there are fewer hormones. It isn’t enough to make me go back to the Mirena though. I just have a bit more acne, cramps and bloating now with the Kyleena compared to when I used the Mirena. You think being almost 33 that acne would be done. At least my flow is still controlled well - I think it is better controlled now with the Kyleena so that is a bonus! You defintly still ovulate with the IUD - I am prone to cysts so I feel when I am ovulating and/or having cysts rupture. That has been normal for me for years and they aren’t problematic cysts (ie. they go away on their own).
  9. I agree it looks like probable blood pooling.
  10. I am not on birth control pills anymore - I quit them many years ago now before my POTS symptoms started. Now I have blood clots in my lungs so definitely not going back to the pill. I have an IUD implant in my uterus instead - I do not get periods at all anymore (just the odd bit of spotting here and there). Even though I don’t bleed I still feel worse during that time of the month - not sure why that is though. I’ve started experiencing bad cramps too - haven’t had those since this was implanted in the spring. I make sure that I keep up with fluids and consume more salt than usual.
  11. Love the science! That is amazing. Totally agree - they are very annoying! Especially when they literally take your breath away 😕
  12. 3,000 PVC’s! Holy cow. I didn’t know that was possible! No wonder they weren’t concerned about mine 😂
  13. I’ve had heart palpitations for years. With my POTS symptoms I started being tested though cardiology. I didn’t realize what kind of palpitations they were - I have PVC’s apparently. I’ve had 2 episodes today already that I was aware of - but my 24 hour monitor showed I had upwards of 20 + PVC’s a day. Cardiology is not concerned about this though. I seem to have them more and more frequently as I age. I feel my heart ‘flip’ in my chest, stop beating, I stop breathing for a second or two and then it starts beating rapidly and then normalizes after that. Aside from the brief breathlessness it never really others me. Sometimes when it ‘flips’ it can be a harder ‘thunk’ in my chest than other days so it varies in how I feel them.
  14. I have not done the Levine protocol but I started doing my own exercises at home to start feeling better. So far it seems to be helping, though it can be very difficult some days. I do squats and lunges (can make me lightheaded), calf raises with weights, bicep curls and other arm / shoulder exercises, crunches / bicycle kicks, leg lifts and of course, the treadmill. I’ve been slowly increasing the amount of weights I lift as well as increasing the difficulty (incline) and speed I walk at. Fingers crossed it continues to have positive results - so far so good. Today I did some vacuuming too - that is a workout on its own!
  15. Glad to hear you are hydrating to avoid getting dehydrated. Electrolyte drinks can help too. Sometimes simple things like vitamins (especially magnesium) can cause reactions too. Maybe keep a journal of meds, foods, etc to see if a pattern develops? Hopefully your doctor can help to figure this out. Raw veggies or too much veggies and fruits can sometimes aggravate the colon too. I know carbs can aggravate POTS but sometimes they can help to bind you up a bit more too. Dairy for me usually causes gas/diarrhea but it used to cause constipation for me years ago - maybe experiment with foods / diet?
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