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Tap

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Tap last won the day on September 11 2013

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About Tap

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    Beekeeping Professor
  • Birthday September 27

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  1. One problem she (and I) have with forums related to her illness, is that she is in the middle ground for symptoms, but occasionally dips into the debilitating end. Reading the related forums, is a huge reminder of the bad days and how easy it is for her to go from upright to bedridden. She isn't into reading about her illness or research, so the medical based ones aren't of interest for her. She met someone radomly a few years ago with her illness and dd didn't have much interest in getting to know her. The other girl struggles more than dd with physical symptoms, but has been able to continue to go to college. I think the combination was really hard for dd to deal with. DD really struggles with brain fog and can't go to college any more. It is one of the hardest things for her to give up. I think she needs something more general about chronic illness instead of something she can realate to so personally. FYI: just for some basic info...she has POTS and can only be upright for part of the day. This is great, because in her bad times, she was almost completely bedridden.
  2. I think like you, more practical advice. "This sucks! Some find relief from ABC or XYZ. But sometimes you just need to cry and say it isn't fair...and that is ok too!" She has had chronic illness for so many years, most of the basic ideas are not helpful.
  3. DD20 has a debilitating chronic illness. She can't work or go to school. She is struggling right now and is thinking about finding a therapist to talk to who may specialize in chronic illnesses. In the meanwhile, she is open to reading books on the subject to see if that helps. Any suggestions?
  4. Love the sinner. Hate the sin. I would not want to draw a line in the sand with my child that put us on divided sides, over a single event in time. Humans grow and explore all aspect of humanity in thier own time and pace. I do not expect my children to follow my same path or even end up at the same destination. I may offer my opinion and reasons why I believe certain things, but I also know that my beliefs were formed because of my experiences not just because someone told me to believe a certain way. My children will also have thier own lifetime of experiences that will guide thier beliefs. I hope that if my kids fall away from what they were taught to believe, that they find solice that they will still be loved and cherrished in my home. I may not want that proverbial sin thrust in my face, but I can see past it and focus on all that is good in them instead.
  5. DD12 needed to eat in the car on the way home from swimming. Her typical snacks.....A large banana and a yogurt (she would have something salty with this too, like a few chips/pretzels etc). A large apple (or 2 smaller ones) and nut butter. Breakfast burrito (eggs/meat/cheese). Bean and cheese burrito. Homemade hamburger. Chocolate milk is a common after swim drink for competative swimmers. My son was a competative swimmer for years. His go to was a simple burrito (meat/beans/cheese/jalepenos) or a simple hamburger. He didn't want saucy/wet/vegetable laden food. He needed a hefty dose of protein and some carbs.
  6. Write it out first. It helps me think through what I need to do. Depending on the situation, it helps me to think through priorities, errors in my process, goals/fears etc. I start with who, what, when, where, why and add in goals, fears, next steps etc. What ever is relevant to the situation.
  7. When dd20 was in early elementary, she started whining constantly. I would try to talk to her about it but she insisted she wasn't as bad as I said she was. Soooo....I put a piece of paper on the refridgerator. Every time she whined, I had her stop what she was doing and make a simple hash mark on the paper. It was a way for her to tally the amout of times she whined. Then she had to repeat what she said, without whining. It only took about 3 days, and then we were able to stop. Having the visual of all the hash marks, that she made herself (no way to say someone added more) was all it took to almost completely stop the problem.
  8. If those don't work out, you can also buy the longer strand and just double back with the lights. That way you have twice the light and it still has the same effect.
  9. 💚🧡💙I am so happy you had a nice day. And Yes, Keep him!!! He is a such a sweetie to walk with you and to make your day fabulous!
  10. With meds and procedures....sure! I haven't had a period since I was 30yo. I had ablation and it took it away 100%. I was never one to have cramps, so I really have zero idea when I would possibly be having my cycle. I used continuous BCP before that, to stop my period. DD12 (my autistic daughter) has had maybe 1.5 cycles in her life, because I called the PCP the day she started and put her on continuous BCP. Her autistic traits with a period would have been horrible to deal with. DD20 used BCP, Patch and then IUD. She hasn't had a period in a few years. So yes, ,we can control it with external forces. If they meant by will of mind...I don't think so.
  11. Sorry, she is being a witch about something so trivial. And yep, that is the clean version of what I think about the situation. We celebrate sometime...within a month before or after events It varies, because it makes it much more fun and relaxing to do it when schedules coordinate and people can join us without the stress of trying to juggle too many things. In fact this Sunday we are going to a dinner to celebrate my birthday and my sons birthday...which are over a month apart. DD is flying home for another reason, so we are celebrating it all together in one, so she can be with us. Obviously you can't control what is important to someone else, but seriously she needs to get over herself and enjoy the fact that she has people who are able to and Want to celebrate with her.
  12. I have a daughter with a chronic illness that just moved to another state with her husband and trying to help her from afar. It is exhausting. I have a daughter with sever mental health and physical issues that we are trying to get dianosed. It is exhausting. I don't homeschool, but I work 48 hours a week outside the home. (I used to homeschool but can't homeschool my youngest due to her high level of needs). My husband is healthy, but travels for work so I am the one at home doing all the heavy lifting. It is exhausting. I feel completely and udderly overwhelmed at times. My mind doesn't shut off. I can't rest or I feel guilty that I am not doing something that needs to be done. I am behind on soooo many things because....sometimes it just doesn't make the list that day. I don't have parents to take care of. How on earth you are able to add that into the mix is astounding. You and I sit in similar cirucumstances and I have to say that if I had the chance to go visit my parents a few times a year....I wouldn't even want to go. It sounds like it is very, hard on you physically and emotionally when you go. (I don't visit my mom on purpose...whole nuther story)I know you feel like you are making the best choices you can and I would never try to tell you differently. But man, that has got to put you over the top when it comes to being over-extended. Guilt if you don't go. Even more Exhaustion if you do. I can't do anything from afar or say anything to lighten your load. But just know that you are not alone and there are others here who would like to send you a virtual hug ((((((HUGS)))))). You know that when people try to put some guilt on you, to let it roll off your back, but I know it isn't that easy. People on the outside of chaos, don't understand what our lives are like and they can imply anything they want. They just don't understand and never will. Let it go and remember the days, before chaos hit, and you didn't understand either. Words of encouragement are filtered through the experiences that each person has lived. The people saying things that hurt you, are problably trying to be kind and encouraging....but what you are hearing is being translated by an exhausted brain, of a daughter who wants to do more for her parents. When people say things that hurt you, and you know those words are coming from a kind place in thier heart, try to remember that they aren't trying to heap guilt on you. Try to hear the words as coming from thier caring hearts and try to not let your exhaustion and guilt add to the words they say. Instead of adding snark to thier words, add compassion and empathy. Someone saying "it is nice you are finally able to visit" likely means just that. They are happy you are here! And they know how hard it was for you to make the time. And they are glad you were able to come visit. No guillt. Just happy for you and happy for your parents.
  13. I don't know if it is genetic, but it can run in families. Have you tried treating it to see if you do any better? I highly recommend a product called Salt Sticks. I order them on Amazon or from the manufacturer. They are not cheap, but they are good quality and don't bother my daughters stomach. DD has severe POTS so her salt/electrolyte protocol is pretty high. She takes 2 Salt Sticks morning and night. She moved to a hot/dry climate so she also takes another salt product VIatassium mid-day. She drinks one or two electrolyte infused drinks daily and adds water to get her to her goal of 80-120oz of water daily. On top of this, she has a port and runs a liter of saline daily. If you want more information on my daughter's path, just ask. I don't mind sharing, but don't want to bog down your thread with a bunch of details you may not need. There are several facebook groups about POTS. I have tried a few and whittled it down to a couple I like. I don't really get much new information there since we are a few years into dd's diagnosis, but it is interesting to see so many people with the same struggle. It is nice to know we are not alone.
  14. POTS? Not really adrenal. It is caused by dysfunction of the autonomic nervous system. They don't really know what causes it, but it often starts after illness, medical treatment or trauma. The messages from the brain that regulate the heart get mixed up and the heart starts misbehaving. Other body systems that are part of the autonomic nervous system can be affected as well. A common one is the GI tract. It shows up there as constipation/diahrrea/cramping or motility issues. That is part of why it is hard to dianose. If a doctor looks at the GI tract or heart, they are healthy. Because it is the message from the brain that is mixed up, not the tissues themselves.
  15. Have her tested. It is the best way to know if her breathing is compromised. We didn't realize dd20 had asthma when she was in middle school until she started running track. She started talking about being short of breath so I took her in. She absolutely had asthma. Once she used an inhaler before exercise, she said "This is what it feels like to breath when running!?!?! I had no idea!!" She had always been out of breath as a kid and thought it was normal so she never said anything. She has never had what looks like an asthma attack, but she actually has severe asthma. She uses a daily steroid inhaler. Her dose is so high, it is what they give people who have COPD. Even with this dose, she barely passes spirometry (a breathing test doctors do). So, just because an asthma attack doesn't see to follow tradional paths, and because she has never complained before...don't rule it out. And yes, stress can cause an asthma attack. So what you saw may have been a panic attack, but it could still be asthma too.
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