Author Topic: You aren't going to believe this...lymphedema followup blew my mind  (Read 5524 times)

irish

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #15 on: April 13, 2013, 01:26:00 PM »
Tinker, I guess I am still concerned about your lymph nodes. I don't get very enlarged when I am having lymph node issues---never have lot other people. I can feel the pressure inside though. It as though I swell up towards the inside and not to the outside. If you have any sign of infection (hoping that you don't) I hope you will have ER and urgent care available for easy access. Hoping all goes well on this holiday. Good luck. Irisih

aussie mum

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #16 on: April 13, 2013, 03:00:08 PM »
Vindicated!

While it's not good that you have been diagnosed with a new condition, I totally understand the feelings that YOU know you are sick and not a nutter like your useless Doctor stated.

I would be writing the offending Doctor a letter, telling him how he has failed in his duty of care with your treatment and you are glad to fire him as your doctor. It might be worth sending a copy of the letter to his medical association too.

I have had similar experiences and it is a shame we need to feel grateful when a Doctor listens to and believes us, when that's what they ALL should do.

I hope all goes well with your treatment Tinker and enjoy your holiday - there's nothing better than a trip to the beach.
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Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D

Carolina

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #17 on: April 13, 2013, 04:08:34 PM »
Ok, Tinker, have a great time at the beach.

Be very vigilant, don't stay on your feet.

You can get cellulitis in your lymphedema and that can be very very serious.

Just saying......

Not to rain on your parade.

And you know how to take care of yourself.

Is this a LONG car trip?  lie down with your FEET ABOVE your heart.  In the back.

And get out and move around a bit.

Hugs

Elaine



Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

jazzlover

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #18 on: April 13, 2013, 05:13:58 PM »
Tinker... Like I said .. my friend has it and she is 100% better after many weeks of physical therapy (which did involve wrapping, etc)... So there is HOPE!!

Have a great vacation!
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Tinker

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #19 on: April 14, 2013, 04:34:35 PM »
Hey, everyone.  Thanks once again for your positive comments.

Irish:  I am concerned about the groin pain and neck tenderness.  It was extremely helpful that you told me that you can swell on the inside and  signs of enlargement may not be visible.  I always feel bad so I can't go by that.

I am probably going to have to revise my game plan at the neuro pa tomorrow.  Since this is a major concern, I have to go in with hat in hand.

I hope she takes it seriously and suggests the MRI/CT scan.  (when I had a bad reaction to breast implants due to br cancer, the doc finally gave in and did a mri and it was after that that he consented to remove the implants. The test showed enlarged lymph nodes all around the implants.  I KNEW something was wrong and finally got it taken care of.  It's always a fight. I'm getting so tired.

I'll be checking my temp., and getting another appt with my rheummy.  If u think of anything else I should do, please tell me.

We will set up the car so that I can put my feet up higher than my butt, and take lots of walking breaks.  I've got to tell my identical twin sister that she has the same thing as me.  She's been under a lot of stress with buying and selling her house and I knew she couldn't handle this news. 
I'll let you guys know what the pa says.  I'm not expecting much.

ellenkerr

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #20 on: April 14, 2013, 06:10:44 PM »
Wow!   I'm pretty new to these boards but reading all of these posts  have truly inspired me to remain strong and continue being an advocate for my own health.  I would have never let doctors treat a member of my family as bad as I have allowed myself to be treated these past few years.  Instead I allowed them to dismiss me and make me feel bad about myself as if I were the nut job they made me out to be.

You are brave and strong and I truly want to thank you for the inspiration.  I've been trying to feel better for the past 20 years and I've been going downhill very fast these past 2 years, and decided I'm not going to let uncaring doctors who don't listen shorten my life.  I made my fist post on the diagnosis page today, so if you have any insight, I'd like to hear it.  I hope better health is in all our futures.  Both of my daughters and their families are taking beach vacations this year, both at different times.  They've invited me to come along, and I have been hesitant due to my health and possible lymphoma hanging over my head.  I decided that staying home or getting treatment could wait a week or two.  What can't wait is the warm white sugary  sand, cool ocean breezes, the bright sunny blue skies, the sounds of the crashing waves and sea gull songs, the smell of the salty air, and watching the grandchildren playing  and romping in the surf.  Heck!! I want to romp in the surf, want to join me?  Lol

Carolina

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #21 on: April 15, 2013, 04:57:27 AM »
Welcome, Ellen,

go for it.

We have to plan pleasure into our lives.

Balance is all.

Keep us posted.

You can sit in a lawn chair at the edge of the surf.  I discovered this two years ago.

Because of my Peripheral Neuropathy (nerve damage in my legs) I can't stand in the surf, or even walk very well on the sand.

But I CAN get myself to the surf, and sit in a chair, with my feet in the waves, and my heart soaring!.

Keep us posted.

Hugs

Elaine
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

Tinker

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Re: You aren't going to believe this...lymphedema followup blew my mind
« Reply #22 on: April 15, 2013, 07:28:54 AM »
Hi Carolina and Ellen,
You two are the bomb!!

Yes, I agree with both of you.  This lymphedema didn't get me yesterday.  It started a long time ago.  and to delay my joyful trip would be wrong.

Ellen, you could write a book about enjoying life and breathing in all the joy and happiness we can get.  I am glad you are going to the surf and have grandchildren to enjoy.  After reading about your sstory, I am convinced I made the right decision. 

And your kids know that you are struggling and will accommodate your needs. 

BTW, I hope the lymphoma ? is resolved in your favor.  Surf and sand, better than any drs treatment!   xoxo