WinterSown

Hi Everybody!

I think most of us have digestive issues from poor motility. Losing my appetite and 60 pounds without trying were part of my initial symptoms. They found I have a PEH that cuts my stomach in half and for a while, reasonably, they thought it was the cause of the weight loss but other symptoms could not be ignored and they just found it as coincidental. I do believe that keeping my stomach from any bloat or irritation helps keep it from compressing on the vagus nerve which will cause all sorts of physical mischief. Unlike you I can't have the ease of supplements anymore, the cardiologist wants it all coming from the food I eat and drink--which is great but with a smaller stomach I have to load up on nutrient and electrolyte rich foods. I cut out most bread and starches long before my diagnosis because they made my stomach bloat, I don't like bread much anyway so it was no loss. I have also cut out most meats which take too long to digest. While it is individual for everyone of us and how we obtain that is also unique, I do think that stomach and gut health are vital to our energy. Do we want to expend energy digesting a heavy bloating meal or do we want to get energized from that food? This past summer I practically lived on kefir and yogurt for a month to reinvigorate my gut health and it made a difference. Once that kicked in the doctor slowly started to steer me towards better self-management practices. Nutrients are as vital as water and exercise for healing. If you are eating foods that block your path to healing you slow that process. As an example, I get colitis if I have too much fat. I know from experience that eating fried fish or the skin from chicken are going to have me sobbing later on in the evening, it takes three days to stop feeling soar and like I did before I shredded my intestines with grease. This is a half week wasted on not getting better. When it comes to your digestion and you go off your management there will be no mercy. It's really important to take care of your stomach and gut--you have less pain and more energy to start, and with that you can do other things to start getting better.

HI GG, the store was fine, it went okay. Planning is everything. As I get used to the store it's much faster to go through it all, it used to be a Pathmark there and it's now a completely different layout inside. We were able to get around fast, there was no line at the fish counter or the deli and we went right up to a register to check out. I wear Skullcandy Uproar Wireless headphones, they have an adjustable band but more important, the earphones are very well padded and do a great job of blocking out a lot of sound. I got them at BestBuy.

Sensory overload completely overwhelms me, it can start right away or kick in a half day later but I will be forced to lay down most of the day. Hubs is about to come back from an appointment and he's going to call me when he's on his way. That's my signal to get ready because we are going to the supermarket after he gets home. I am going to take 2mg of valium which is my vertigo medicine, a cup of coffee to pre-empt the migraine (it does sometimes work), and I will put on my headphones. I will take my sunglasses in my purse and if need be put them on in the store. This is a planned trip. I google store locations and it brings up a side panel of the store information including its busiest traffic hours, it's not going to be too busy; I'll wait about five minutes at Stew Leonard's to check-out which is very doable.

I am tired of taking care of stuff I no longer use. A lot I've held onto for sentimental reasons but I just can't put the energy into this anymore. I think it's a visual trigger as well because of sensory overload. For guidance I bought a book called Swedish Death Cleaning and think it makes sense. I am only halfway through the book and I haven't tossed a thing yet but I now have a plan on how to downsize my possessions over the next year. It's not going to be a weekend purge but a gentle excavation room by room. I'm using up my energy to take care of all this stuff and need to downsize so I less things have to take care of and keep more spoons for the things I need. What is 'Swedish death cleaning' and should you be doing it?

I have a new batch on the counter: celery, green apple and cucumber. Nummy. I like making new combos. I have so much more energy now, it's wonderful.

Last month I needed to up my nutrition so I joined WW online. I keep my focus on nutrition as a means to help me feel better and it does. Overall I feel much better, my complexion is better, motility is a lot better (yay!) and I have more energy as well. And, because I kept the focus on getting healthy from what I eat, I have also magically lost some pounds without any fretting or worry. I'm there for the healthy eating aspect--it's a different point of view and it's working. It's been good for my head too, it's nice to try out some new recipes and I am making their focus fast to prep with little clean-up afterwards. I hope you start feeling better soon.

Welcome to everyone. Happy New Years.

You are certainly stressing your heart, only a doctor and testing can tell if it being damaged. Chest pain needs to be investigated by a doctor, call your primary and get a referral to a cardiologist to begin getting your symptoms checked out and get you into a management that will get you better. I do exercise everyday but my program was developed by my PTD to match my needs. He has slowly increased my endurance and strength to match my capacities.

Have you ever experienced one yourself? What did it feel like?

It's not a guy/gal thing at all. Nope. How are you defining exercise intolerance? Some people can have more or less reactions to activity, especially if you are not used to it. I've been working with a PT for almost two years, just got back from a session, and I am hardly wiped out anymore from them. It's part of the therapy I do there--to have more endurance. I think it's great that you can do physical activity, I exercise and walk everyday--there are a lot of us who do. There are some forums where discussing exercise is practically tabu but there are other places where it is encouraged and discussed--we don't all hide in the dark, there are some dysautonomics that do encourage others to exercise and we have our forums. After a while you learn not to talk about it on the other forums because it stresses out people who don't have the physical capacity yet to do much activity.

A couple of weeks back my cardiologist knocked me off all supplements, everything now has to come from whatever I eat and drink. I keep a jug of water on the kitchen sink. Today I crushed some watermelon and added to it the juice of an orange and strained the mix into the water jug. Wow. This is my first try with any aqua fresca but I love it. This isn't sweet at all but so good. Watermelon is loaded with electrolytes and the orange has some too, it does give the water some boost. I'm going to try cucumber and celery next. Does anyone have any combos that they really love? (It's a great way to use up my fresh produce before it dies in the fridge.)

Happy to have you join us, this is a very friendly group.

Some days I just shampoo and use the soap on my hands to wash up and down my body as fast as I can, and get out in a minute or three. It bugs me most when I get home from PT and I am sweaty but don't have the energy even to get undressed, let alone drag myself into the shower. Baby powder only goes so far. When it's bad I sit in the tub and use a plastic cup to dowse myself. I cut my hair to a micro pixie because I can just towel dry without a comb out. I hope you feel better soon.

Ask how soon cutting back on your meds will make you an eight or nine. Get a realistic timeline and if you aren't happy with less drugs get on the phone and tell them. I think its great that you are getting better. Every few weeks my EP cuts one of my drugs in half to make me better and it's been working. My symptoms are pendulous and the doses I needed a year ago are sending me to fogville now, if I had kept with the stronger doses I'd be on the floor. It's not easy to give up something you've become dependent on but getting better as a result of it is the goal. it's a tough to be told to give up a script, but then again it's a sign of getting better. I wish you well.

Tonight I am happy. They're not making me nauseous anymore, I take them with food now and I am fine. Fortunately it was just a matter of a few days, I was able to adapt my management to use them. No reaction at all now except feeling better. I didn't need any naps today and could exercise with a few different pieces here, I'm about to go put on my ski pants and walk the dogs one after each other, no snow but it's COLD. Tomorrow I go back to PT, my first visit after starting thermotabs--I am stoked to see how well I do in my workout.

Yes, that's right. Salt pills are not drugs. Sorta. And, as I wrote above, I would still like to be off most my drugs next year. Luckily my doctors are professors and or department heads. I suspect they may know about sodium and its effects.

The neuro put me on the thermotabs because my BP is as low as my energy, got lots of fog though. I'll be seeing my primary next week and the two cardios in three weeks, we'll talk about it and adjust as needed. I would love to be off most my drugs, I am on less than last year which I attribute to my PT who has created wonderful exercise and balance programs for me.

I love broth, I love mugs of it in winter. I am making veggie soup this afternoon--yummy brothy goodness. This morning I had less of a reaction. I made sure I was well fed and watered first and then I went back to bed for a bit after taking the termotab. I felt better afterwards, less barfiness. I am learning how to take them--I don't like them one bit but so far I have some less fog and I'm less fainty so I need to stick with it until my reactions or symptoms worsen.

Snug yoga pants will do it too.

Thank you Vepa. Right now it's all hands on deck to raise my BP and this is another step in the Cut My Drugs and Raise My Vitals ChaCha. My doctors are very good at keeping me out of the gutter, literally, so no complaints there. I so want less reactions to my actions to improve my health. Right now I'm just taking three tabs--AM, afternoon, and PM, I'll give it a few more days and hopefully it will settle out or I'm chucking the bottle.

The neuro added thermotabs to my management a few days ago and so far they seem to take the edge off some symptoms yet about a minute after I take one I am instantly nauseous. I have to drink more water to thin out the salt bomb which helps ease off the reaction intensity. I am hoping this is just my body adjusting to a new drug and I'll get used to it soon but in the meantime does anyone have advice on how to take these without the quease? Pleh. Thermotabs

So nice to welcome new folks. Glad to have you here.