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Topic: GRRRRRRRRR I HATE LE..........

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Oct 14, 2010 09:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Feb 11, 2019 05:26PM MinusTwo wrote:

Kake - also recommend this stellar site, created with lots of input & contributions from BCO members. If you decide to pay for at least one visit with a trained therapist, you should be able to get some info here.

https://www.stepup-speakout.org/


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 12, 2019 12:04AM Binney4 wrote:

Vargadoll, how are you doing? Anytime there are indications of Inflammation or infection on the LE side the wisest route is to get it seen at once. When you go to ER or urgent care, repeat the words "lymphedema" and "cellulitis" to everyone you see, as they need to be aware of that possibility.

Don't wait!
Binney

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Feb 12, 2019 11:04AM JO-5 wrote:

Vara,

How are you doing? Did you see the dr?

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 12, 2019 11:17AM - edited Feb 12, 2019 11:18AM by JO-5

I have a question about massage. I did like the therapist I found this Fall. She told me she was Vodder trained but has integrated other methods.

I may be doing it wrong but it doesn't seem to be working as well now. I looked up different methods....and watched different videos. It becomes confusing. She said when clearing the under arm to place the whole hand about mid way in the arm pit pump up and release. I just read one where it said pump top to bottom of the arm pit.

Then I found this:

What do you ladies use? What do you think of all the different methods?

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 14, 2019 04:44PM Kake wrote:

Thank you so much Joanne. I will check those titles out.


Peace Sister

Dx 9/28/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 1/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Hormonal Therapy 2/6/2019 Surgery Prophylactic ovary removal
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Feb 17, 2019 09:19AM purple32 wrote:

RE: LABS w/ bilateral LE

99% sure I have pancreatitis....possibly from cortisone shot app 3 weeks ago/now worsening.

Went to ER...they want blood!!!!!!!!!!

REFUSED to get from foot as they said I could be diabetic and claimed I'd get diabetic neuroplathy! Dont want that.

Tried VERY hard to bully me, yelling etc ...quite upsetting.

In any case, I was BORDERLINE on last A1c and gusessing cortisone may have pushed me into diabetes.

HELP! They wont help me without blood work. U.S . didnt show much , but US tech said pancreas hides behind the bowel. Symptoms are now severe and quite SIMILAR to my old gallbladder symptoms from 11 yrs ago but they saw no stones.

Also refused chest x ray as they sais they coudl not give me a good reason why they wanted it! ( hello ?)

PLEASE ADVISE.

Thanks so much for always being there.

Im in trouble here,

Laurie

PS Le on the R arm came from a blood draw 2 yrs ago!

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 18, 2019 09:47AM Vargadoll wrote:

Purple32- so sorry to read your post! There has to be a better way! I'm not much help because I only have LE in one side. I'm sure someone have some good advice! Hope you are feeling better and have some answers for your pain.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 18, 2019 08:54PM MinusTwo wrote:

Purple - I live in the city with the 3rd biggest medical center in the nation (or the 2nd depending on who's blowing their horns). Out of 5 or 6 HUGE major research & teaching hospitals, only one place has agreed to do foot draws - the head doc at the Blood Donor & transfusion center. I found him because I cried on the phone any number of times. I expect I could get a foot draw at MD Anderson, but it's like jumping through hoops if you're not already a patient. Anyway - try a major hospital blood donor center.

My friend's husband had a lower GI, then followed up with CT scans w/contrast and a PET/CT to confirm his pancreatic issues. They can also get a hint with a cancer antigen blood test - although a different variety than the BC cancer antigen tests.

It's also difficult to find clinics & hospitals who will do the contrast medium in your foot for the tests. But it can be done.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 19, 2019 09:58AM purple32 wrote:

cancer antigen blood test - although a different variety than the BC cancer antigen tests.



YEP...but still need the bloodwork! They claim that IF Im diabetic ( NOT UNliklely) it will cause peripheral neuropathy. Dont want that either. TOO risky.

HIVES and welts upon waking daily.(Gone overnight!) Bloated belly - Only eating dried toast, tiny amts of benign food . Otherwise I'll have something that *feels like* gallbladder attack,

No good answers.

THX for your reply- very much appreciated.

Laurie

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 19, 2019 10:00AM purple32 wrote:

THX!I actually got the LE on the right FROM a blood draw! ( I had prev broken that arm which was the ' insult" . )

UGH

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 19, 2019 12:54PM Vargadoll wrote:

Purple32- hope you are feeling better today! LE sure does complicate life!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Feb 21, 2019 10:17AM - edited Feb 23, 2019 11:31AM by purple32

Many thanks to all of you...STILL having issues. DAILY hives. Bad swollen belly. Morning edema . VERY LImtedED in foods . SMALL Attacks now and then similar to GB atacks ( mine is out ) but NO stones seen on US .

I dunno but ODLLY enough, all this started within 2 days of a cortsione shot. Before that, my stomach was F I N E :>0( DRs will not get ' creative' on drawing blood

sigh

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 21, 2019 01:31PM - edited Feb 21, 2019 06:27PM by JO-5

purple,

I found this under Horrific Side Effects From Cortisone Shots............

(Another negative side effect of cortisone injections is, unfortunately, weight gain and abdominal swelling.)

The same article talked about skin rashes, and skin problems.

I had cortisone shots in my knees and had racing heart, foggy thinking, mood changes, and it lasted 9 days. This was from one time with a shot in each knee. 7 months later I had a shot in one knee only. The dr's thinking was that 2 knees at once was too much. Same reactions except they resolved in about 4-5 days.

This could very well be, in my opinion the cortisone.

I have no idea what to tell you about the blood draw except what has already been suggested.

Joanne


Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 23, 2019 11:31AM - edited Feb 23, 2019 11:36AM by purple32

Oh yes, IMHO it IS from the cortisine but all of my symptoms easily add up to pancreatitis. AND if you google " can you get pancreatitis from a cortsione shot >" Guess what ? You can!


ALSO...who else has gotten blood drawn from anywhere but the arm and WHERE (on body ) and WHO took it ?The DR at Baystate said she was not qualified to take from groin for example and foot draw no good in case of diabetes. What they hey ? Who can draw ?

Help!

THX

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 23, 2019 11:37AM purple32 wrote:

Jo5

My great therapist did VODDER
I think you can find her on youtube

KATHY FLEMING

hth

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 23, 2019 11:40AM JO-5 wrote:

Oh.....I didn't know that cortisone could cause pancreatitis but not surprised. I know I was very ill from the the injections I had.

I haven't gone back and read......but can't you get scans of that area or something or do you need blood work first?

What a dilemma!

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 23, 2019 11:48AM - edited Feb 23, 2019 12:21PM by JO-5

I just remembered what my dr told me when I was first dx in 04.

He said, "Do not get blood work or bp in that right arm. However if for some horrible reason yor left arm gets cut off and you can't have blood drawn any where else....go ahead with the right arm because it could save your life." That sounds crude but I understood what he meant.

It sounds like you are in a place where you might just have to let them draw blood from the other arm. Lymphedema can be controlled, and it may not happen.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 27, 2019 07:23AM purple32 wrote:

New PCP sending me for labs. He took A1 C and said I am just NEAR PRE-diabetes and he cannot imagine why the foot should be an issue- I think they were just trying to scare me into giving my arm!
JUST IN CASE I get someone who has never done it, where in the foot is it generally drawn from please ? ALSO, daily huge hives have caused the need for EpiPen. Need help soon.

THX for any reply- anyone.

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 27, 2019 12:20PM JO-5 wrote:

purple,

I do not know about the foot....but this will bump your post up.

Happy for you that you've gotten this far. Hope you get some help soon.

Joanne

Org dx 04 lumpectomy rads arimidex stage 1 grade 3 no nodes er+pr+her- 2014 rads induced angiosarcoma, wide excision 2015 angio recurrence, rt mast. Lat flap, 1/3 flap went necrotic, skin graft leg to chest Seeing dr every 3 to 6 months.
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Feb 27, 2019 12:26PM MinusTwo wrote:

They usually draw from the big vein just above my ankle & towards the front of my leg. I expect it will depend on where your best veins lie.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 28, 2019 07:31AM purple32 wrote:

THX all....hoping to get blood drawn today from foot - will report back just in case it is helpful to anyone else.

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 28, 2019 08:31AM Mucki1991 wrote:

Have any ladies here had the VLNT surgery? If so what were your results? How quickly did you see improvement? I did mine last month and I'm looking for some good news.

Rebekah Dx 5/5/2017, ILC/IDC/IDC: Papillary, Left, 3cm, Stage IIB, Grade 3, 3/7 nodes, ER+/PR+, HER2- (IHC) Surgery 7/13/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/22/2017 AC + T (Taxol) Surgery 2/8/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 2/25/2018 3DCRT: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/17/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 1/24/2019
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Feb 28, 2019 10:24AM - edited Mar 1, 2019 02:17PM by purple32

FOLLOW UP on foot draw and Many thanks to all of you.

Just had the foot blood draw.

ADVICE

1. Call ahead and ask of anyone there has experience ( I got a VERY nice lady who had)

2. Maybe take some baby aspirin for a few days prior (daily) as I was wishing I had . ASK your dr if ok.

3. Have your A1C tested prior ( now!) My new PCP did mine in the office as a finger prick to reassure I have no diabetes ( A1C, NOT random glucose)

Soooo, it wasnt bad at all - the initial pinch. She did have a tough time finding a vein and only got app half the blood she wanted, BUT said not to worry becaiuse much is really not needed for each test.

SO glad I got someone who was nice.

HTH someone!

I'll add on from what the OTHERS said and remember the next time to stay hydrated and point the toes! THX to all.

Lymphedema on LEFT. NO rads. 2 clean nodes. purple32. Hope is our light ... in the night..UPDATE : 2017 blood draw in RIGHT arm CAUSED new LE due to fact arm had just healed from a break and already had an ' insult' plus poor lymph system. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Lumpectomy: Left
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Feb 28, 2019 08:29PM MinusTwo wrote:

Purple - I forgot to mention - yes I always call ahead & have a firm appointment.

The doc I use does a small shot of lidocaine (like novocaine at the dentist) before he inserts the needle for the blood draw. No pain at all.

The last time they were having a hard time getting enough blood and I started to 'point & flex" my foot.l As long as I did that, the blood flow was great. The doc said he'll remember that next time.

Mucki - I don't know anyone who has had VLNT, but will in the answers & the discussion.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 1, 2019 12:09AM - edited Mar 1, 2019 10:42AM by hugz4u

Hi purple. Sorry your in another tough patch. I get my foot draw in same place as minus on ankle and also right on top of the foot. Smallest needle is best. I have small viens that run away. We heat the foot up with hot blankets and rub the foot. Also make sure you are hydrated especially if first thing in morn.

Jo how are you doing with LEand family with stroke? Take care.

I can't post much as my extreme dry eye doesn't allow me to read much now.


Edited to add. I’m prediabtic controlled with diet and exercise I do foot but watch for infection and make sure they know that to be clean with me

I always ask for most experienced. Sometimes that works sometimes they claim their good then start fishing around with needle. I give them two strikes then they are out. I only have so many foot veins to play with then it will be neck and no one wants to give you it there. Or if you ask someone from emerg to come to lab or off hospital floor or Dementia ward they are all use to foot draws cause they can’t get at flaying arms.

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Mar 1, 2019 11:27AM MinusTwo wrote:

Hugz - sorry to hear about your eye. Do you believe it will get better soon?

I never thought about dementia ward nurses. Good idea. For my last surgery, no one in the anesthesia dept of a major hospital was able to start a line. After I said no more, they brought one of the head OR nurses.

Purple - Hugz is right about the needle size. On my last blood draw, I remember the tech saying she planned to use a 'child's size' needle.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 10, 2019 12:10AM hugz4u wrote:

Minus. Thanks for asking about my dry eye disease. I have it a bit control now with many types of spendy drugs and drops. Sheesh I thought le was expensive. This is no cheap hobby, these eyes. Unfortunately it will get worse down the road but I will deal with it one day at a time. On the plus side exercise seems to give me a bit of eye comfort.

I’m so sorry I can’t spend much time reading anymore I do miss your posts and helping when I can. I try to pop in on good eye days.

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