So I have not been feeling well and decide to go grab some hot egg drop soup for lunch at a joint called paradise café. I begin to eat this and my tongue forgets what it is suppose to do in that whole swallowing action we do when we eat. It's a CRPS issue I've had for a while now and strikes whenever it wants to but almost always this is a problem when the repetitive action of swallow, swallow, pause is involved. I had actually forgot about this when I went for soup. I was looking for comfort food being sick and all.

Anyway, so I start to eat and start to choke. I mean REALLY CHOKE! With all the phlegm I have going on this only made what is always kind of frightening experience, a crazy scary experience! Sheesh! I am by myself and think well hell, I'm going to die in paradise.. lol. Now my head wont quit pounding... ug / ouch! It's nap time now for sure.

I'm sorry you had such a bad experience eating. Sometimes when I eat the food seems to gets stuck in my throat and won't move for a about a minute. It's gross but I usually have to get it back up and then spit it out. Usually acid accompanies it. I don't know why this happens but it sucks. I'm going to ask my endo dr about it when I see her next week. It doesn't happen too often thank goodness. I never had the tongue problem you have though, but it sounds awful. I hope it doesn't happen anymore to you and that you feel better soon.

hey guys.. this happens to me ..A lot! when I spoke with My PM dr he said it is most likely due to the medications we take. first our body responds slower than a normal body (meds) and also the medication dries us out making it more difficult to swallow ..the enzymes that make up saliva also act as a lubricant.. knowing doesn't make it suck less

lol ... so true!

Sorry it’s such an explicate docu of my day today.

So there was no nap today (damn it). I worked this morning , went to lunch, made my post here, laid down and I start having big time pain in what feels like my gallbladder (right side by my lower rib cage). Also having intermittent pain on the opposite (left side) too. My upper back muscles (not my spine), chicken wings area, screaming with pain. I felt nauseous, I have had HORRIBLE heartburn, digestive issues, and everything in me was saying your gallbladder is in trouble. Trying to find something to eat that doesn’t kill me with indigestion afterwards is a chore. This was another reason I was trying to seek out something I thought might be easy on me. Soup that was basically clear, and well that didn’t work out, so I ended up with chicken and veggies (Moo Goo). Apparently it was all for not. I ended up in the ER tonight. What a fiasco that was. I just love the hospital.

I felt so bad because I waited for my husband to get home to take me right after he walks in the door from work (new job started in Oct). He’s sick as a dog (several of us in the house have this virus) and I have to make him drive me across town and sit in the ER with me. His head is about to explode from sinus pain, he’s brought his laptop to try and finish his homework (he’s in college), as his term papers are coming due, and did I mention just a few weeks ago we got news that his father has terminal lung cancer that has metastases in his bones, brain, spine… everywhere. They have given him six months. He lives in San Francisco. So while we are in our five hour wait and see pattern with me, he gives me an update on what’s going on with his Dad. I feel like such a pain in his you know what. This man must truly love me, and because I love him, I feel like such an extra burden!! It’s ALWAYS something going on with me!!


The ER.. The short version of this visit: They do an EKG to make sure I’m not having a heart attack (omg) and thank goodness that was ok. They do a sonogram and gallbladder looks fine (in the moment I’m finding this VERY hard to believe). They have me swallow a lidocaine / Maalox cocktail. I did tell them I nearly choked to death earlier in the day. At this point I am scared that I will have a repeat episode, but I do it anyway. OMG!!! That was horrible in every way! They gave me some meds for pain, and IV Zofran and some sort if IV antacid.

The bottom line: The diagnoses is GERD. What? What’s that? Doc tells me; gastroeesophageal reflux disease (perfect, another disease), and PUD Peptic ulcer disease (oh great, one more). Says it’s probably also Gastro paresis. Awesome. I think I’ve heard about the connection with that and CRPS. He looks at me like he has no idea to confirm a connection, so we glaze over that.

So not only do I have spasms in my bladder, I have to assume that the CRPS is the culprit here too as the doc is explaining the nerves involved in all this. <sigh>

They loaded me up with Rx and now I will be looking for a GI doc I guess. ER Doc says, yes, you need to see one. This is turning into a full time job just chasing doctors. I can’t even get what is supposed to be my other full time job put to bed so I can focus on all this. I’ve been lucky to get 3, 4 or MAYBE 5 hours in at work and then I’m done. I have to lay down for the balance of the day.

I feel so overwhelmed with all this. My disease(s) are wearing me out, literally. And I fear everyone else too! Damn it’s depressing.

Oh Vrae honey, I'm so sorry you're dealing with yet more and more... At least they didn't say there wasn't anything wrong (which we all know they can do even in the most extreme circumstances) and you know what's been causing those awful problems. Hopefully they can treat them now and you will start to feel a bit better.

Of course it sucks. You completely don't deserve this crap, and I wish I could wave a magic wand for every one of us and just take it all away. But we can't, and you have to take some deep breaths and gradually come to terms with it and find some balance again.

You'll be ok girl. You're brave and positive and you can get through this. I admire so much the way you tackle everything that tries to stop you living your life the way you want. You'll get there.

As Joe Black said, 'you're one of my favourites'

Bram.

Hi Vrae, I'm sorry you have to see a GI, but at least the ER didn't find anything wrong with your gallbladder. I understand the overwhelmed part with drs. I feel like it's a full time job too seeing them and am not looking forward to seeing my Endo dr next week. I still have to get my mammogram this year, which I haven't done yet, because of all my other health stuff going on. I don't know how you work full time with three kids and deal with all your drs appts and all of your pain while taking such high doses of nuerontin. I give you ALOT of credit. You inspire me to keep fighting. I hope you feel better soon and my thoughts are with you.

Hey Vrae,

Dang girl.. I'm so sorry to learn of your lunch and then ER trip, that had to have been one scary. Glad to hear the ER seems to have treated you with respect and did a thorough evaluation with appropriate referrals. I hope you are able to get into the GI specialist quickly.

I don't know anything about GERD or PUD but I am intimately familiar with gastroparesis and can offer a few tips that have help me deal with it. Very small meals like even just a few bites at a time or nothing bigger in total volume of more than a half of a cup. Chew, Chew, Chew.. this is very important since our stomach no longer has the ability to break things up and move them along.. so you can't chew to much. Avoid drinking anything including water with meals.. and try to have your last sip 30-45 min. before/after meal time. Grazing throughout the day instead of eating "meals" works much better for me.. although it makes it difficult to eat with others Even a sandwich for me is cut into quarters, so it generally takes me 2-3 hours to finish a normal size sandwich. Avoiding high fat foods, meat and pork products, salads, uncooked vegetables, corn and products made with corn has helped me tremendously. When things are really bad I switch to a pureed diet for a few days, sticking with the same principle of no more than a 1/2 cup total volume at one time max. If you are vomiting a lot, then you will really benefit by epsom salt soaks to improve your magnesium levels. You will also want to watch your potassium and sodium levels when frequent vomiting episodes occur as this will only increase problems. I hate gatorade but that is a good source of electrolytes if you can tolerate small amounts of it. A couple of saltine crackers twice a day will give you plenty of potassium and may help reduce reflux when taking meds. Sorry for rambling..

I hope some of the above is helpful to you and most importantly I hope and pray you are able to get these GI issues under control quickly.

You are blessed (as am I) to have a wonderful and supportive husband. I am sorry to hear about his father and hope that his remaining time is filled with fond memories, family & friends!

Have a better day,
Tessa

Thanks Tessa!

GERD/PUD: Me either, but I guess it will be my new homework / research project. Thank you so much for the advice on gastroparesis! I know what you’re saying is true and yet as I am reading it and I am thinking that I have a LOT of work to do to change my eating habits. After last night it’s pretty much in my face that I have to make some changes. It was really painful and still feels swollen in that area to me. It’s all weird.

May I ask, why no fluids with meals? No salad and no raw veggies? … well damn. I will miss those!

I love to cook. Of course it is becoming a chore more than pleasure anymore, and now in many more ways than one. We have such a large family still at home that I tend to try and cook things that stretch. It’s become such a hassle with my guts that I have been just avoiding eating and then eating one meal a day, and maybe a snack along the way through my day. This wouldn’t be good if I had no stomach issues.

I’m sure that you can relate when I say that the days take on a life of their own and making, taking time for me, is some days next to impossible. I have so many lifestyle changes that MUST be made. I feel like I am going in s-l-o-w motion while drowning in my “to do” list. The kids, the husband, our business, his job, school for everyone, my father in law, the house, the animals, this damn virus … oh and my disease(s), now plural I guess.

Without any doubt I am truly blessed to have this wonderful, wonderful man in my life. My partner, my lover, my best friend, my confidante. We have had a magical love affair that has lasted over a decade. I can’t even imagine life without him. With that said, I feel like I am wearing him down. I can see the extra stress on him coming from so many directions and it frankly aggravates me beyond measure that I am a part of that additional stress. <sigh>

Thank you for the kind words about my father in law. My husband and his brother are going to visit him during Thanksgiving. I am hoping they can make a few more good memories during what will be such a tough time for all of them.

Thanks again to you and the others for your response. You guys are the best! I’m off to try and have a much better day and see what I can knock off of that list of mine. VR

Vrae, your husband is a lucky guy too, and remember that if things had been the other way around and it was him fighting all this stuff, even though some times might be very difficult, you wouldn't blame or resent him. 'For better or worse'

That drowning, slow motion feeling sounds very familiar... Hang in there, and well done - keep going, keep fighting. You'll get there.

Bram.