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LisaBulman

So Frustrated!

33 posts in this topic

Hello everyone!

 

Sorry but I just have to vent..... It all started two weeks ago. I hurt my knee so I went to the dr. He said I probably have a strained medial collateral ligament in my right knee but I should be feeling much better in a week or so. If I wasn't I should call to get an MRI and see an orthopedic dr. He also said it wasn't a virgin knee (had surgery for ligamnet and cartilidge damage back in 90 or so) so there could be other issues going on but let's wait it out. Fine with me. Well two weeks has gone by and I am still in pain and it is hard to sleep. :( Now, last week I started feeling a bit short of breath. But for the past five nights I have been going to bed and I feel like I have an elephant sitting on me! I can not breath at all. I have been up past midnight every night trying to catch my breath so I can fall asleep only to find when I wake up in the morning I still can't breath, but it is not as bad as at night. On tuesday night I was outside on my steps at 11pm trying to breathe in some cool air, but that didn't work. I am soooo tired. As if this isn't enough..... My 9 yr old had to go to the ortho the other day because she has been having pain in feet for months...good news only tendonisits. But my 7 yr old, some of you already know this, has a condition called Chiari Malformation, where the back part of her brain comes down past her skull line and is pressing on her spinal cord and is causing many other issues, has been having episodes of choking. She'll just be easting dinner and then she starts choking and we are all running to get her to help her and then the food comes out and she is ok. Her pediatrician thought it was probably her tonsils getting in the way so he said to see the ENT. We went to the ENT and he tried to look down her throat with a little camera but she kept gagging. He then wanted to numb her nose and go in that way but she said, "NO, I am done here." Well, he doesn't think it is her tonsils, he thinks it is something else causing this. She now has to go in for a swallow study. GREAT!!!! How is my 7 yr old going to do this when I can barely swallow the barium!! UUUGGGHHHH!!!

 

Sorry so long.... just had to get it out! Thanks for lostening.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Lisa take a deep breath and try to relax, I have an idea can you sleep on an angle? Maybe that will help.. I use to wake up feeling that way then I starting sleeping on the recliner. then I had a sleep apeana test done. So maybe you should look into that, I am sorry to hear about your knee, I have had knee problems every since I can remember. And for your daughter I will keep her in my thoughts. You take care of your self, and let us know how things are going with the both of you. Sam


Sam

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Lisa Darlin'.

Well I started my nagging already in a PM and I'll continue it here. Go see your pulmonary doctor and rheumatologist! Find out what's going on with this breathing problem.

 

UGH is right about Grace. For her age, that poor girl has had way more than her share of problems. Sounds like she's starting to resist. My heart goes out to her and you.

 

Big, big hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Oh Lisa, that's a lot to deal with. I'm sorry your little girl is having those problems. It's so not fair that any little kid has to go through such medical problems.

 

Hope you find out what's up with your sob and hope your knee heals up without having to have any more surgery!

 

I'll be thinking of ya,

Love,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Lisa,

Thanks for letting us in on what is going on at your home. Sounds like you and your family have your hands very full with different issues.

 

I am sending Gentle Hugs your way....in hopes that things start to settle there and you and the girls start feeling better soon!


*WestCoast*

 

********

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Hi Lisa,

 

Oh my goodness, that is an awful lot to deal with at once! And the unfortunate thing is, that tends to put us in a total head spin that makes it nearly impossible to tackle things in a logical order.

 

While you are sorting things out, I'd recommend you might consider the idea of making a big sign saying "OUT SICK THIS MONTH" on the refrigerator. Then immediately cancel any and all "optional" activities (except important doctor appointments or things that are very uplifting for you) by simply saying you are OUT SICK.

 

Sometimes, in all the hustle and bustle, we forget that bottom line is, we are sick. Then we give ourselves less care and coddling than if we just had the common cold. You are sick on top of sick on top of sick, plus with children who are sick!

 

Then make a list of things that need to be dealt with while you are out sick, and put it in order of priority. Your knee and difficulty breathing would be right up there at the top.

 

One phrase I like to use on myself when I feel things are lurching out of control, is to say, "The world will keep spinning on its axis, whether or not I do this now." That helps to take some of the pressure off, so that I can pause long enough to prioritize, sort out, and deal with things logically and in their own good time.

 

And she's probably going to do fine with the barium study. And if not, the world will still keep spinning on its axis and they will still somehow manage to figure out what it is and how to make it better.

 

Of course, you know all these things, and you are always among the first to jump in and help us sort out our issues. But too much has piled up on you too fast! That's why I suggest it may be time to consider being OUT SICK for nearly all the "normal" activities in life. Maybe even being off your feet for a good spell might allow your knee to begin healing.

 

I'm sending lots of extra warm hugs your way!!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Lisa, my heart goes out to you and your little ones.

You've been given some great ideas... recliner sleeping is something I had to do when I had my pleurisy attack... only place I could get a couple of winks.

It really is difficult to cope with things when exhausted from lack of sleep and stress, to boot. Don't know if you like tea... but if you do, "sleepy teas" can work wonders, as can lavender sprayed on your pillow, etc... lavender can really relax me when I'm having a stressful time.

Let us know how things are going?

Lovin' Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Oh Lisa,

 

My goodness, I can understand your frustration. I am impressed that you are coping at all!! I wish you the best and please keep us posted. I glad you were able to vent here, you know we all love you!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Lisa,

I am so sorry that you have so many yucky things going on at this time. Please get your SOB checked out. I am sure your precious daughter will be a real trooper. I am sorry she has to go through all of that. I send a big hug your way. :D

Nan

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Lisa,

Sending you tons of support! My heart goes out to those that have to cope with an illness AND sick family members. I hope you and the little ones get through this soon. I love Shelley's Out Sick idea. Sometimes I feel guilty for canceling plans with people, or not wanting to commit to things in advance.

Be good to you.

xo,

Jen

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Lisa,

I did not know your daughter had Chiari Malformation. I am so sorry. Bless her heart. I have a friend who thinks that is her problem...she is showing symptoms of M.S. and her doctors have mentioned Chiari. I've been reading a lot about it lately. I hope you babies are doing well.

xo,

Jen

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Ok I took the advice given here and I broke down and called the dr. for myself. Well what did he recommend?....I have to go to the ER now and he is requesting that I stay for the night!!! UUGGGHHHHH.... Off I go...

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa,

 

Well, I'm thrilled that you are getting taken care of, even if it's only an overnighter. Now you will feel more confident in posting an "OUT SICK" sign on your frig?

 

I hope you fare okay and send all my best wishes with you.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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(((((((((( LISA ))))))))))

 

I just wanted to say I am sorry that you are going through all this and I also feel bad for your little one for having such medical issues to deal with at such a young age.

 

Like Janey said, go to the Dr. I would be breaking down my doctors door if I was having such breating troubles. Please get seen, you are far too important to let this go on.


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Oh Lisa,

 

You're probably gone already. Please know that I'm sending positive thoughts your way. I hope all is fine very quickly.

 

Don't ever put yourself last. You gotta be well to help others. And we need you, too! :)


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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Lisa,

I am so sorry you're going through so much turmoil. Please take care of yourself. I'm wondering if any of your problems might be stress related. After all your poor family is going through, the stress would hit me like a ton of bricks. Best wishes to you and yours.

 

Sherion

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Lisa,

 

I am so sorry for everything you are going through. You are truly a role model for all of us. My thoughts are with you to give you courage and strength.


Kind regards,

 

Kamlesh

 

 

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Lisa,

 

You've had wonderful advice and an outpouring of love and hugs from so many. I want to add my hugs and love. I also want to add my encouragement that you follow Shelley's advice. As usual, she has a plan that is logical and makes totally good sense--something that is so hard to come by when we are in the center of the tornado.

 

I'll be thinking hard about you and your sweet daughter. Also your hubby and other daughter. All of this affects the entire family. Take good care of you....things work out in their time, not always our time.

 

xoxo emmie

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Wow, Sweetie - this must be very frustrating for your whole family. I am glad you are finally getting something done about this and by the time you read this, I hope it will find you breathing easier. Hugs to you - gentle ones.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Lisa,

I'm joining this thread late, but just wanted to add my heartfelt good wishes for your quick recovery and for that of your family.

 

Mary in Texas

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Good morning Lisa, I have been busy catching up on several days postings. I hope you are back home and recovering from your episodes of breathing difficultly. That is one thing we can't seem to live without. I am so glad you decided to get some help instead of starving your body of so much needed oxygen. I hope you are back home and resting until you have to take care of your childrens situations. I know you feel like you need to be their everything. They understand your situation and are just happy to have your near them or in the same room even though you can't do everything for them. It is not always what you do for someone. It is just being there. Let them be near you also. If they can help that is great if not just knowing you are all together under the same roof is security in and of itself. I sure hope you are stable now. Let us know what was decided and what help you received. You are in my thoughts. I send soft hugs and warm breezes to you. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Lisa ,

 

How are you doing today? I hope you got some sleep last night......even if it was in the hopsital. Keep us posted. Been thinking of you.

 

Take care, Everyone.

Margaret

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Do you think Lisa might have phneumonia? Sorta sounds like what I have had in the past. Elephants standing on your chest. Yeap! Still thinking about you girlfriend. More hugs and more hugs. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi everyone,

THANK YOU for all of your support and kind words. I was released from the hospital yesterday and still didn't sleep that well at home. In the hospital I think I slept for about two hours total. It is so noisy in there and really, what is the point of them waking you at 5am to take medication?? It was for my GERD... I don't get up at 5am to take it, so why do they wake you up? It doesn't make sense to me. Anyway. I had a chest xray, 2 echo's (one in the er and a full one the next day), a cat scan with contrats, 5 ekg's and a walk test, plus medical class listening to my lungs twice a day. Good news, I don't have fluid around my heart, there is no pulmonary embolism, no pulmonary hypertension, no pneumonia and my o2 stats were stable the whole time. They did find fibrotic changes in my lungs so they are assuming that is why I am short of breath. They will call me tomorrow with an appointment for a pft and we'll go from there. My regular rheumatologist is on vaca in Italy and is out for another week but I saw another rheumatologist from his office plus two of the fellows, who all specialize in sclero.

 

I am off to go lay down! Thank you all!! This is what this board is about, support, encouragement and sometimes being pushy to get others to do what they know they should but don't!!!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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