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Posted 3/28/2010 2:58 AM (GMT 0)
Systemic Scleroderma, recently I have been having problems swollowing. My rhuemy says it is scleraderma so I guess I should pay more attention to what can happen.

I'm actually really scared when I'm alone and can't breath. With my lungs being so bad now I never know if I should try to get the food down with water or just try to cough. I have to breath through my nose and with breathing problems I don't have much to work with. I think one of these times I'm just going to choke to death. I don't mean to sound mellow dramatic but not having anyone to help me plus if it sticks in my throat I will get an infection more than likely.cry I hate sounding like a baby but I really get scared. I decided to get off the xanax a couple of weeks ago. I taped off. I'm beginning to think I should have stayed on it. I am now more aware of just how sick I really am. I'm glad God gave me a sense of humor because I don't think I would have lasted this long without it.

and without you guys as a support team for me.

well I just had to get  this off my chest. Barb said I should drink ensure because I don't eat much of anything. I wish I could lose weight. I only take 5mg. of pred. so it's not that. I mean if I'm going to starve I'd like to see some results.

love ya guys

carol

Posted 3/28/2010 3:08 AM (GMT 0)
(((Carol))),
Bless your heart sweetie! I wish you had someone staying with you...I'm sure that is very scary! I have problems swallowing sometimes because of Sjogren's. I often have to stop eating after one bite, but usually I can eat later.

Ensure may be a good source of vitamins and minerals for you to think about when you have these spells. I do wish your breathing would improve and you could feel better.

And you don't sound like a baby sweetie...you have a good reason to be upset. You have an awesome sense of humor even when you are feeling so down. You can always make me laugh.

Hang in there and take care of yourself. Keep us updated. You are in my thoughts and prayers.

Love ya, Babs
Posted 3/28/2010 2:30 PM (GMT 0)
Carol, that's just awful. You poor thing. Does your rheumy know that you live alone? Make sure he does so that you'll be safe living alone in your place. I know you love being there, but I just don't want you to get in trouble and have no one to help you. Do you wear a medic alert necklace? If not, that might be the solution.

Sorry it's been so long since we've talked, Carol. I've had too much going on lately and not enough time to get together with my buddies, whether in person or on the phone.

Take care sweetie.

Pat
Posted 3/28/2010 4:32 PM (GMT 0)
Thanks Bab's and Pat, I appreciate you reading my post and responding. I made a salad last night. I left it in the fridge with salad dressing on it. It got soft and still I've tried three different times to get it down and half of it is still in the fridge. That and herb tea is all I have gotten down in about 48 hours.

Pat I know you have been out of town with that sweet little grandson! I know you loved every minute of it. No need to apologize. As for the question I don't think my rheumy knows anything about my living situation but I do have life alert. I was going to talk to them about itthough because the alarm goes off 3 times before anyone picks it upp and frankly it is quite a long times especially when you are choking. I don't know if they can change it to pick up sooner.
Barb is sending me a card so I can get some of those drinks. (she's a sweetheart) Hopefully when I start getting b12 shots I'll feel better. that's the 13th.
anyway thnks again my friends
love ya
carol
Posted 3/28/2010 9:46 PM (GMT 0)
Oh Sweetie! i am sorry about this new symptoms. I agree about the ensure. Does this happen a lot? I will deffinatly be praying for you!

Love ya Carol!
Posted 3/29/2010 5:27 AM (GMT 0)
Hi Carol,
It's emmie...'member me? anyhoo, I have scleroderma ya know and I'm wondering if your rheumie said anything about what to do with the swallowing problem. I sometimes have the problem where I feel like food is getting stuck as I'm swallowing it or other times I'm done swallowing and I feel like it's still sitting there. Not a good feeling! Either way what works is to take a drink and swallow while holding your chin down toward your chest. You might need to do it a couple of times, but it always works. I don't know why but it does.

I also agree that some Ensure or Boost is a good idea. Maybe some of the reason you're not feeling real good right now is because you haven't been comfortable eating for a while and you need some good nourishment. Hey, you start sucking down some of these drinks and getting those B12 shots and look out...we'll have okie gone wild! Take care, sweetie.

xoxo emmie
Posted 3/29/2010 8:36 PM (GMT 0)
Hi ya aims and emmie, Aimes a just had a deep choclate ensure I'm not thrilled but I didn't choke anyway.

Emmie, emmie, emmie, How the heck are you lady? You scleroderma sister you! It nice to know this syptoms aren't in my head. Well except the fog. I will try the holding my neck down like you said. If nothing else it sounds like a great exercise for my neck muscles. I might choke to death but I'm gonna look great doing it!
after you posted I looked it up under scleroderma and you were right it mentioned the choking or feeling like choking and that they sometimes do a esphogeal stretch. Gee I been wanting one of those for a long time. I called my doctor I couldn't get in until thursday so she wants to see me thursday morning I'll come back here and post what she has to say.
Don't be a stranger. What have you been up to anyway? Love ya gal
love you guys thanks again
carol
Posted 3/29/2010 9:59 PM (GMT 0)
I used to be a speech pathologist before i got dx with CNS lupus.  For your swallowing problems u might want to have a modified barium swallow study done.  it needs to be ordered by a dr.  Hopefully the speech pathologist will be able to tell u some techniques u can use to improve your swallowing.  Best of luck  Jen
Posted 3/29/2010 10:10 PM (GMT 0)
I have problems swollowing sometimes. I keep forgetting to tell my doctor. I can't eat certain foods because of it anymore. It is scary to say the least.
Posted 3/30/2010 1:36 AM (GMT 0)

Thanks Jen and redrose, Rose sounds like you might need to mention it. although I for get so much stuff when I go to the doctor I understand how you would spce it.

Hey Jen , how are you? I was quite interested in what you were saying. When I was to sick to come home I spent about a month in the nursing home and they had someone come in to talk to me about choking. She said she did what you mentions about teaching people how not to choke. I have to admit that it is all pretty fuzzy. I was pretty sick at the time but I will discuss it with my doctor. She wants me in thursday. I appreciate  you sharing. My sister was with me when the therapist came in and asked about my choking but neither of us could remeber where she was from. It really rang a bell when you said that.

take care ladies

hugs

carol

Posted 3/31/2010 3:02 AM (GMT 0)
 Another thing i noticed in your original post was wondering if u should drink water or cough when u r choking.  If u have lung issues u should always try to cough to protect yout airway.  i am pretty sure u saw a speech therapist at the nursing home.  I was dx 7/09 after having sudden onset of seizures in 1/08.  Have not been able to work since july but have good family support.  Good luck with your dr's appt on thursday jenn
Posted 3/31/2010 11:20 PM (GMT 0)
((((((carol))))))

I'm sorry you're going through this, carol! I know where you're coming from....I have trouble swallowing sometimes too, but I HAVE mentioned it to my doctor and he hasn't suggested anything to help yet. It can be very scary!

Thanks for the tip about drinking water with your chin down, emmie! That's good to know!

JoAnn
Posted 4/1/2010 6:12 AM (GMT 0)
Thanks Jen and joann, I've got a doctor appt in the morning. I'm sure she will give me the b 12 shot as well since I'm already there. I sure hope it gives me some energy. I have been getting up in the morning having coffee and laying down on the couch. This is no life at all. Now I can't even eat. I have sworn off pork and beef except burgers. since they a pretty tender and I can break them apart. but steaks and roast are a no no.
well I guess I pretty try to get some sleep
take care
talk to you soon
carol
Posted 4/1/2010 3:01 PM (GMT 0)
I'm glad you're going to see your doctor. I know how much you like your hamburgers, and what's life without them!
Posted 4/1/2010 4:06 PM (GMT 0)
Hi Carol. You sure do go through lots Sweetie. I taught CPR for a while which included the heimlich manuver.  I found a good link with photos and detailed explanations  

http://en.wikipedia.org/wiki/Choking 

What's really important for you is there's a method of performing the heimlich manuver when you're alone.

 

Self treatment with abdominal thrusts: A person may also perform abdominal thrusts on themselves by using a fixed object such as a railing or the back of a chair to apply pressure where a rescuer's hands would normally do so. As with other forms of the procedure, it is possible that internal injuries may result.

Personally I've always doubted this works, but when you're alone and in trouble anything is worth a try. You may want to print stuff from this link and keep it in a handy place. Love Ya! Donna

Posted 4/1/2010 7:27 PM (GMT 0)
I saw a successful Heimlich in the restaurant I where I had lunch yesterday! We should all update ourselves on how to do this on each other and ourselves. So good to know.
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