new to forum, diagnostic mammo and ultrasound found large lumps

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straydog
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Date Joined Feb 2003
Total Posts : 15149
   Posted 9/5/2017 6:55 AM (GMT -7)   
Hi E, still around. I am well north of Houston. We had some very badly needed rain from Harvey for 3 days. It was a blessing, we rarely have rain this time of year. However, those in the path of it, its beyond devastating.

You know what you are doing I think is beneficial for you. When you start getting disgusted because your body isn't cooperating, remind yourself what your body has gone through the past 4 months. Keep at it & pat yourself on the back for staying with it you will make progress. I will share this with you. When I got sick & had to quit working I was devastated. My health was in the crapper & I fell into a dark place. My dr insisted I get with a psychologist & he put me on an antidepressant. The psychologist was fantastic. She asked what I did all day, I said nothing I shower & put clean pajamas on every day. I didn't wear street clothes except to go to the drs... I cried all the time had huge pity parties. My full time job became seeing 5 specialists. She said you need to get back into your normal daily routine as close to it that you can. So instead of pj's I got dressed. It took time but I managed to put together a routine. We both know when you work all of your life you have a routine. We are routine people. So, knowing this much about you, keep up your morning routine & anything from precancer days.

I am still at the lake place.i came down Friday & the kids all came down for the long weekend. They left yesterday & I have some clean up to do. I plan to go home tomorrow.

Keep your head up & look ahead, put the other junk in your rear view mirror. You are one very strong lady. I look at what you have over come to now & have a very deep respect for where you are now. Keep me posted.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/5/2017 11:16 AM (GMT -7)   
Thank you. I thing your psychiatrist gave great advice! I am trying, and I feel pretty positive today, following my pre-cancer routine.

I am so glad Harvey didn't get you. We are worrying over Irma now. I'm in the Clearwater area (near St.Pete/Tampa). I've been here nearly all my life and have never evacuated before. A couple times we put up sandbags to prevent water from coming in the house, and taken in all the outdoor furniture and hanging plants and other things that could be flying objects in high winds. The gas stations all have long lines (we need gas), and the few stores my husband tried are already out of water. I'm not even thinking evacuation at this point. It seems like so many times it has shown the hurricane path is going to hit us directly, but it turns and we are spared. Praying that is the case again here.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/7/2017 11:17 AM (GMT -7)   
It has been good for me to continue with as many pre-cancer physical activities as best I can. I am up to 41 ab crunches, just 2 push ups, splits still are a real effort and I don't get near to 180 degrees. The 10-point balance routine is having some success! If I were being judged by karate black belt standards, it would be a failure. But each time I do it I can hold a position a little longer, or there will be a little less wobble. So I am actually thrilled.

At the moment, all I can think of is Irma. We've been lucky in my county (Pinellas) for decades, just having a few tree limbs down, maybe a few roofs damaged, and minor flooding in some places. So I'm starting to think 'our time is due'.....Plus, I think maybe everything bad that's happened to me is just a precursor to worse things to come. My BRCA cancer gene tests were negative, yet I got cancer... and how rare is it to have a part of the breast reconstruction to fail (the right side tissue expander), and getting GBS is SO rare.....I read .001 chance of getting it.

My younger son in first year law school is in constant contact with us. His older brother, who is off the grid, we have not heard from. He is so off the grid I don't know if he even is aware of Irma. Well, here I go crying.......the mere mention of my older son sets me off into a crying fit, I am so worried about him (even before Irma). I consider my older son the thing I am most upset about. On a scale of 1 to 100, cancer worry is a one.... GBS worry is about a ten. Older son worry is 100+.

I had an appointment for this afternoon with the cancer counselor, and she had to cancel, as our county has a mandatory evacuation for her zone. Our county is very small.... a little peninsula in the Gulf of Mexico. I fear the entire county will get a mandatory evacuation order.

Pray for us!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/9/2017 9:42 AM (GMT -7)   
Irma! Irma! Irma! That's all I can think about. I've been through the threat of, and the minor effects of SO many hurricanes. But Irma is affecting me to such a greater degree. Probably because my emotions are out of whack to begin with! Also, the weather channel spaghetti noodle models have all the noodles going right over my house. Plus, my WBC is so low, I can't get a cut or infection from anything, let alone hurricane debris, plus the stress is affecting my GBS, my legs are feeling more paralyzed!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 9/9/2017 9:56 AM (GMT -7)   
E, I know what you are saying about Irma. I have a sister in Tampa & she foolishly thought along with her neighbors they would be safe because they are somewhat inland. She now realizes that she made a mistake. Her neighbors were boarding up their windows yesterday. She lives alone. My other sister told her things to do because where she lives the tornadoes are worrisome. I just don't know. I hope you escape the bad stuff, its so hard to predict what can happen in seconds.Her daughter & SIL are safe in NY. They have been on vacation in London & landed in NY yesterday. They are staying there until its over. Since they live on the beach they may not have a home to come back to.

I am saying lots of prayers for everyone.
Susie
Moderator in Chronic Pain & Psoriasis Forums

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 9/12/2017 5:15 PM (GMT -7)   
E, just checking on you to see how you weathered the storm. My sister was very lucky. Wind was an issue, fences down & some tree limbs.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/14/2017 5:14 PM (GMT -7)   
We survived Irma! Just lost all power for a few days, which is not fun, but I think I've read that there are still a million Floridians without power, so I know we're lucky. We had part of our chimney fly off, and some rather large oak tree branches from our yard and from neighbors' yards to clean up. Some houses in our hood were not as lucky. We are in a heavily treed area, with many huge, old oaks.

I called my PS today to see if we have a date set yet for my reconstruction. Again I was told they didn't have all the information collected yet to set a date. I asked what doctor or doctors did they still need info from, and we could go get it and deliver it to their office. She said, No, they still were just working on figuring it out and they'll call when they have a date.

A part of me thinks "this is sounding ridiculous". But then I look at my left breast, which is so perfectly done and with invisible scars, and I think , "okay, I'll wait, she must have a good reason". I still believe it's because of the GBS. She must feel like she has to check on every drug and procedure I will have, to make sure that it won't set off my GBS again. So I'm being unusually patient.

Irma has messed with my workout routine. There is so much clean up to do, and of course I really can't do much in a walker, but I try. We boarded every window and had sandbags across one side of the house, and inside the house a couple hundred paintings, crystal, china, and antiques had all been stored safely. It seems to take a LOT more effort to put things back than it did to take them down.

I know when I first got GBS and I disappeared for 5 weeks, one of my first posts back I said i was going to have to tell the horror story of my first 2 weeks in one hospital, before I was sent to another one for 3 weeks. But actually, I've been unable until very recently to even think about it. Both hospitals had sent questionnaires to fill out about their service. The second hospital questionnaire I filled out right away with glowing reviews. The questionnaire from the first hospital I couldn't bring myself to look at for four months. It just sat on the coffee table staring at me. I'm not ready to "go public" and post about it here yet, but I filled out the questionnaire and added a typed, 6 page history of my treatment and mailed it out today.

Best of health and positive thoughts to all!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/22/2017 2:11 PM (GMT -7)   
I can't believe it's been so long since I've written. It certainly hasn't been because I've been busy. Just about the only thing I've done is binge watch tv shows. I needed to see the newest season of House of Cards, and since it had been over a year since I watched season 4, my husband and I went back to season 1 and went through every episode through season 4, and just this week started season 5. With a gf down the street we binged on Stranger Things. One of the cable channels has been airing old ER episodes, starting with the pilot. Supposedly there are 15 seasons of ER, but so far they just keep repeating seasons one through 4 over and over.

I've done my pre-cancer warm up routines maybe only every other day. I am up to 4 push ups. I am stuck at 45 sit ups, and the last ten kill me. Splits are still difficult and far from complete. On a few of the 10 point balance moves I can hold the position for a few seconds without much wobbling. But once I do the pivot on my balancing foot, it's all over...... I mean I keep going, but each of the moves I do after the pivot is pitiful. It was never this hard as a beginner. Duh, I have GBS and my feet are numb and I have no sense of balance, so I know I can't expect quick, or even complete success.....perhaps ever.

I've been having a pity party for the last couple days over my hair....which is stuck at 1 1/2 inches, and stands straight up all over my head. Anyone who has followed my thread from the start knows that I have hair issues. I had quite long, and pretty, hair. I'm not a young person, but I had young person hair. I'm not sure how many more years I would have kept it this long, or even longer, but I do know that when the time would come for me to have a more mature person's hair, I would never, ever gone for a mannish cut, like many older women do. And once again, please forgive me for having such negative emotions toward very short hair, I have no idea what childhood incident put that imprint in my brain, but it's there.

Actually, there are four things I've managed to do for decades, because I didn't want the negative consequences that would almost certainly come later. Living in Florida my whole life, as a kid and teen and sometimes one's entire life, is spent enjoying getting a tan. When I was VERY young, like 12 or 13, I kept overhearing my mom and so many of my mom's friends (who were in there 30s and 40s) complaining about the "sun spots" on their hands making their hands look so old. And way back then I remember I started putting SPF 30 on my hands, and I did it daily, even when not tanning, and to this day I do not have a single spot on my hands. Another thing I saw when I was pretty young were the debilitating effects of osteoporosis, and I vowed I'd never end up hunched over. So I read that I needed extra calcium, magnesium, vit D3, and weight-bearing exercises to ward off bone loss through the years. And for decades I have diligently taken those measures and it has worked. When I had a bone density scan before surgery, she said I have the bones of a 25 year old. The third thing was I didn't want to end up with missing teeth or dentures when I was old, so even though I never went to my PC doctor for an annual pap smear or breast exam (STUPID!!!!!!!).... I never missed a six month cleaning.

The 4th thing I've worked on for decades was the hair. I know I sound so vain and shallow. I am lucky to be alive. However, these four things I had control over for decades, and for decades I have succeeded. The hair was lost overnight. It came out 2 days before Thanksgiving last year, and even though I stopped chemo in February, seven months ago, I only have 1 1/2 inches of hair. And my hair grows hideously slow, it always has. So I will have this mannish hair for a very long time. I can't wear a wig every moment of the day---they get hot, itchy sometimes, and I'm sure it's good to have my scalp "breathe".....

It's so hard to have worked on something for decades and have it taken away overnight, and not easily or quickly replaceable. I guess I'd feel the same if chemo caused my teeth to fall out overnight and I had to wait a very long time to have them again, or if I'd woken up suddenly hunched over, or my hands suddenly were covered with sun spots, and I wasn't allowed to even cover the spots for a long time.

So decades of living a certain way to achieve certain results, and then to have one thing gone is traumatizing me. I do feel ridiculous saying that, but it's true.

I still have this deflated right tissue expander and the right side of my chest is quite ugly, yet I'm not traumatized by that. I'm irked I still don't have a surgery date to replace it, but that's different. There was nothing I did every day to protect my breasts, so the loss of them isn't as hard on me, maybe. Maybe if I had religiously done self exams and never missed an annual checkup, I'd feel more "cheated" out of losing my breasts. But I was stupid. I avoided breast exams from as early as I can remember, because my breasts were large and I could feel lumps in them. I'm sure as a 12 year old the lumps were nothing, but I was scared to know for sure, so I just never continued with the self exams and kept away from doctors unless it was unavoidable.

Aye, aye, aye.... I go from not chatting at all to babbling like a self-centered idiot. Of course I have other things on my mind that are depressing me besides my stupid hair, but perhaps it's just easier to pin ALL of my hurt and angry and helpless feelings toward my hair, than it is to address the other issues.

Best of health and positive thought to all. I need to remember this, too, and stop wallowing!

Post Edited (exqualls) : 9/22/2017 3:18:16 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 9/23/2017 8:02 AM (GMT -7)   
Good morning E. I have been wondering about you, lol. I have been absent a lot from here. We went on vacation for a few days last week with 3 other couples. We rented a 4 bedroom houseboat & had such a great time. We are very partial to Lake Ouachita in Arkansas. Have spent several vacations there over the years. My son & his gf hosted a backyard concert at my house last night. Had quite a turnout close to 50 people here. I have been busy getting ready for this. This morning I am so tired. My son is coming over later to put plants & everything back in its place. My husband just asked me if I would go to the lake house with him & come back tomorrow. I had to decline, I need a day of just rest. If I go there I will work & not get any rest.

I am very glad to read that you are staying with your pre-cancer warm up routine. It's amazing how our normal routine goes out the window when a crisis hits. I have a daily routine here & if I don't stay with it things go downhill. I had a daily routine all of my adult life. Adjusting to my grandson going back to school was not easy for me. I still meet him at his bus certain days but it's not the same.

I have to disagree with you about feeling vain & shallow over the hair loss. The reason I say that is for many people, male & female that is kind of like a signature for them. People are either born with beautiful hair or they aren't,lol. Hair is something I notice on people especially the ones with beautiful hair. One of our close friends has beautiful silver white hair & a matching goatee. He orders his shampoo & conditioner from a place & has for years. He says the product he uses keeps the yellow out. His hair & goatee are just striking when you see him. Many of the men in the PC forum have struggled with hair loss from chemo too. Forgive me, I hope you understand what I am trying to say, I am really tired this morning. I agree with you on not wearing the wig a lot & allowing your scalp & hair to breathe. Do you remember back in the early 70's wiglets when were the rage? You may be too young. Women with shorter hair wore them to have their hair up in what was called basket weave curls. I was one of them, lol. It was an up do style. Well, let me tell you, from having the sides of my hair pulled back I had the beginning of a receding hair line, it was pretty thin along with the rest of my hair. On top my hair was not getting to breathe like normal from the wiglet!

Oh I think having a pity party is a must at times. I brought this up with my psychologist & she said it was fine as long as I did not linger there for any length of time. I still have them from time to time. Good for the soul.

While I am not much of a tv fan, I overdosed down at the lake one night. I found a show that had 5 seasons & I went through several seasons one night, until 2:00am! My husband was shocked. He laughed & said that must have been some show to have kept your attention that long. That was a marathon for me.

E, I have debated about bringing this up, however, I will just put it out here. I have thought long & hard about it. I think you should consider seeing an atty about a Wrongful Termination case. You can get a free consult with one. You followed all of the procedures of the company. Please consider this.

My son just got here so I need to get busy. Catch up with you soon. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/23/2017 1:34 PM (GMT -7)   
Susie, your trip with friends sounds GREAT! And then the big concert/party at your house! You definitely need a rest from having fun--it takes a lot of energy, so I hope you can chill out and do as little as possible for a couple days.

Thanks for thinking I'm not vain and shallow about my hair, and for pointing out that men go through trauma when they lose their hair from chemo, too (as well as the unlucky men who lose it through genetics..... but that's more gradual. It's the immediacy that your hair is there one second, and the next second it's laying on the couch next to you that is so devastating.)

I will look into wrongful termination. I have always been so quick to presume that everyone is doing the right thing and not breaking any laws or rules. I've always been that way, and often it has been to my detriment.

I am curious as to what TV show got you to binge?

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/24/2017 3:51 PM (GMT -7)   
I am filing a claim with the EEOC (Equal Employment Opportunity Commission) tomorrow, as the first step toward finding out if I do or do not have a valid claim for wrongful termination. I know a lot of folks read this thread, so maybe if anyone out there reading has had any experience with wrongful termination, you could post?

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/27/2017 8:32 PM (GMT -7)   
So I did start the process with the EEOC as my first step to find out if I was wrongfully terminated. I was so sure that I was not, but since a couple of people have mentioned that I should look into it further, I am. I don't want to be stupid or naive, just because it is my natural inclination to believe that I was treated fairly. We'll see what the legal minds have to say about it.

i had to look back to the beginning of the thread almost to find out just how long ago my right expander failed, and I was surprised it was so long ago.... early to mid-November. So for ten and a half months I have had what is a truly horrible looking (and feeling) disaster on the right side of my chest. The "hardness" of the other expander does not bother me, as it can't be felt with the expander filled up and rounded out. But on the right side, where it all just collapsed and caved in, there is an easily viewed, and felt, very hard and round "lid-shaped" THING under my skin.

And tomorrow morning it will be SIX WEEKS & THREE DAYS since I was at my PS office to get, what I thought, would be a surgery date to swap this disaster out for a new one. I was disappointed to walk out that Monday without a date, and to have to wait until "maybe up to the end of the week", as the doctor had said, to get the date. I still have not heard a thing.
Two times when I called the office to ask if there was a date yet, I was put on hold while she checked my file or whatever, and was then told both times that the doctor was still getting the information she needed before being able to set it up. I called again yesterday, during business hours, but got the answering machine, and I left a detailed message about how anxious I am to get a date, and even more just to get an update as to what the hold up is, and if there was anything I could do to help. No call back before close of business yesterday and no call back today.

I have been patient. I have thought about what "things" could be holding it up-- like she wanted to have written confirmation from each of my doctors that it was okay to proceed even though I have GBS. So I allowed a decent amount of time for that. Then Hurricane Irma had a significant impact on my county and some doctors' offices were closed for up to 2 weeks.

But WHY hasn't anyone been able to tell me what is causing the delay? I'm starting to feel like I've been "dumped" by my doctor. It can't be something that she's happy about.....to have to re-do a surgery because of a product failure. Maybe she called the insurance company for pre-authorization and they said "the patient already had surgery for tissue expanders, we're not covering it again".......Honestly, if that is the issue, I may lose my mind and not recover it. I CANNOT deal with the endless insurance problems, denials, appeals, any longer. I have started imagining my life going on with my chest being left as it is..... if she's "dumped me", I guess she won't be switching out my left expander for the implant, either! This is where my mind starts to spiral out of control, and all I want to do is curl up in a ball on the couch and cry and watch TV and just not deal with any of this again...When I imagine that I have enough "oomph" to DO anything, I've thought about calling my surgeon, who coordinated the original mastectomies with this PS so she could start my reconstruction by putting these expanders in as soon as he was finished getting the cancer out, and asking HIM if he has heard from her, or should he recommend a different PS to "finish up". But I hate that idea, too, as I can't imagine anyone doing a better job on making all these scars virtually invisible.... But then again, what good are invisible scars on one side, and a hideously deformed, caved-in, and lumpy looking (from the "lid" shaped expander showing through my skin), on the other side? If another, less technically proficient doctor did my right side, and the scars look bad....that's got to be a better result than I have right now.....then again, I am CERTAIN that bringing another doctor into the mix WOULD cause questions/delays, etc with my insurance company, and I really am just imagining that no one is going to take responsibility for this mess ....okay, see how I'm spiraling?

This was supposed to be the "easy" part. Reconstruction. I heal well and quickly from surgeries. I already got the cancer out of the way, done with chemo, done with radiation, and this surgery (although an extra one that most women do not have to deal with), I was ready for--- looking forward to, even. And now nothing is easy again. I was looking forward to the surgery as a RELIEF almost, as it would be a clear sign I was moving past just being a person with GBS. I'd be a woman who was moving toward completing the process of recovering from cancer. Ugh, my brain is going around in circles.... circles that are spiraling the drain.

In less than 30 minutes it will be 9/28 (EST), which is exactly one year since my mastectomies.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 9/28/2017 5:32 AM (GMT -7)   
E, I can tell I have been out of the legal field quite a few years, lol. Yes, you do file with EEOC first. I fielded many calls directing people to file with them first. A friend of mine handled one for a lady & won. I am sorry I cannot remember the specifics of her case, its just been too long. I am so happy that you are checking into this.

I am guessing that you see a neurologist for the GB. I would call the neuro's office & ask if the PS has contacted the dr about doing the final surgery. Someone in that office can look in your chart & tell you. All they have to do is look in the computer. Next, I would send a letter to the PS that you have been calling her office, no date still & that you are beginning to feel that you have been abandoned & are extremely concerned with little communication from her office. I would also point out the time frame since she said she needed to check with the drs. But, most of all, explain that you need this surgery done before the end of the year because of you have a high deductible yearly. I would ask the PS to call you. Does this PS have a nurse in her office? Perhaps this will get her attention, as phone calls are not yielding you any answers. NO, I do not believe this is an insurance issue, they would have told you immediately if that was an issue. PS, are good about notifying a patient when there is an insurance issue.

I agree bringing in another PS is not a good idea at this point. I encourage you to call the neuro & send the PS a letter. You have had more than your fair share of obstacles in the past year. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/28/2017 10:13 AM (GMT -7)   
Susie, I forgot to ask how your relatives in Florida made out from Irma? Did anyone have much damage? I hope not! I think Pinellas and Hillsborough counties (where I'm guessing they live), got off fairly easy...mostly loss of power a few days, and limbs down. A couple counties away peoples' homes are STILL half underwater and you have to use a boat down the streets!

My husband called the PS's office and was able to get a promise that the doctor would review all my information and call me tomorrow. I called the neuro's office to see if they had sent whatever info the PS needed, and am waiting on a call back.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 9/30/2017 10:13 AM (GMT -7)   
Today is Saturday. It was Thursday when my husband called the PS office and explained to the office manager how long we've been waiting, and that I had left a detailed message on the voice mail on Tuesday, and we've received no call back. On Thursday the office manager told my husband that the doctor would review all my information that night and would call me on Friday. Drum roll........
no call back. Friday night, after hours when I knew I'd get the machine, I left a long and emotional message repeating that I'd been living with this deflated expander for nearly eleven months, and I know I had to wait until after radiation to have surgery, but radiation ended 7/11, and now I've been waiting on a surgery date since I saw the doctor on 8/14, and that I feel like I have been dumped, and had no idea what to do. At the very least I wanted to be told if that is the case, I said I'd wait Monday on a call back, but if I didn't get one I would arrive Tuesday morning just before the office opens (7:30) so I could speak to the doctor before patients arrive.

UGH!!!!!!! I don't like any of this!!! I had had nothing but the warmest, most confident feelings for this doctor, and now I don't know what is going on. I think I will also call the surgeon who did my mastectomy, as it was he who recommended her to be there with him starting the reconstruction as soon as he was done. This doctor is a "superstar" when it comes to breast cancer. Celebrities come to see him.....they fly in their mothers and sisters and wives to have him do their surgery. I am hoping he'll feel "some" responsibility for recommending her in the first place, so once he hears my story, maybe he'll place a call to her and find out what's up. I don't know. I am grasping at straws.

Someone called me yesterday from the EEOC as they'd received my initial inquiry. We were on the phone for quite awhile, going over all the facts, and she said that the cursory opinion was that the employer did nothing wrong. She said I can still file a formal complaint with them, which would then be further reviewed, and that the answer would more than likely be that the EEOC dismisses my claim. However it does still leave me open to sue my employer, but that suit has to be filed within 90 days of getting the letter of dismissal from the EEOC. So, something else I don't know how I'll proceed with.

Post Edited (exqualls) : 10/2/2017 6:28:28 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 10/1/2017 9:11 AM (GMT -7)   
E, I really do empathize with you over this PS not returning calls, that is not a good sign to me. While she may have the best set of credentials to her credit, there is no excuse for her not returning any of your calls. I mean no excuse. If this is how she handles all of her patients & something tells me yes, perhaps it is time to switch. I think you have an excellent idea of calling the dr that referred you to her. I am quite sure he knows of more than one great PS. Rather than trying to speak with the dr directly, what about asking to talk to his nurse? Or what about scheduling a short appt with him to discuss this? Your phone calls have not been about piddly little concerns, this is major stuff. I am sure she is busy, but being too busy to address something like this, I say move forward with someone new.

Ok, once again, brain fart when it comes to the legal stuff. I know EEOC checks for what is called discrimination with an employer, such as age, race & religion & ect. I don't think your situation falls in that category under Wrongful Termination. I suggest getting online & look for an atty that does labor law, make a phone call or two to get an idea which direction you may possibly go in. It would take a just a few minutes to do this. I had to stop working in 04, it certainly shows what I have forgotten too.

My sister in Tampa had only debris & some branches that fell on her roof. She was very fortunate. She was quite scared so we pretty much texted throughout the night. Between my son & I we kept her occupied as much as we could. She is 75 & lives alone so it was tough for her. We kept reminding her to keep her phone charged, her power was going on on & off. Very thankful she is ok.

Keep me posted on this PS thing. I would be willing to bet the surgeon can help you get another excellent PS. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 10/2/2017 9:31:21 AM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 10/2/2017 8:52 AM (GMT -7)   
Today is Monday. The PS called me early, waking me up. She apologized profusely for not returning calls. She said she had had 2 major staff turnovers, and between that and dealing with Hurricane Irma the paperwork was shuffled around and she dropped the ball on me. She said she still wanted to be my doctor and to see me through to the end. She asked for me to give her 2 days, and promised me I'd hear back from her. I feel much better now.

And completely out of the blue, in Saturday's mail I got notice from the SSA that I was approved for SSD!!! No more dealing with sending in various doctors' reports to the insurance company who is taking care of my Long Term Disability. I expect that there might be a little overlap or something that might go wrong for the first month, but I don't even care. I am just so thankful to be getting SSD. It's not a tremendous amount, not enough to live on even if I were single, but it will help.

I am confused as well, because my letter did not say anything about Medicare. I did as much research as I could online, and what I learned was if you get SSD and you're under 65, you aren't eligible for Medicare for 25 months from the time disability was approved. SSA put my disability as starting March 1, 2017. I've already been on COBRA for 2 months, so I only have 16 months left on that.

At my last oncology visit she thought that my thyroid seemed enlarged, and thyroid cancer is a possible side effect of radiation, so I have an appointment later today for an ultrasound. Yippee!

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 10/2/2017 9:22 AM (GMT -7)   
E, usually there are a couple of letters that will come after the initial. I cannot remember what my original letter said about Medicare. SSD can be awarded two different ways. They will award it for x amount of time, then do a review to see if the person is still disabled, or award it on a permanent basis. Either way, this little windfall could not have come at a better time & will help with your COBRA payments. Since they went back to March the clock starts ticking on the Medicare. Congrats on getting it.

Oh, your LTD will continue with SSD, so yes, you will have to keep LTD informed with records. SSD gets an offset since you are entitled to LTD. Normally the two should bring you up to what you made while working between the two payments. As long as drs deem you disabled the two will pay normally to the age of 65. Once a person turns 65 the LTD stops & you are kicked over to SSD with an increase in the check from them. At least this is how it has always been.

Wow, finally, finally you get a call from your PS. Lets hope she follows through as she says she will. I am so relieved she finally called you.

Will be praying this thyroid thing is ok!!! Will look forward to a good report once your dr tells you what it showed. You will not find out anything today from the tech. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 10/2/2017 5:27 PM (GMT -7)   
My SSD check is slightly more than my LTD , so i’ll stop getting LTD altogether. Oh, and mine said recheck in 5-7 years, which is good enough for me. And then it’ll most likely get extended if I still have any remaining Guillain Barre effects.

You never told me what tv show you binged on. Either that was an oversight, OR, it’s a really embarrassing show, lol.

Post Edited (exqualls) : 10/3/2017 8:42:34 AM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 10/3/2017 6:32 AM (GMT -7)   
Your LTD will continue & you should continue to receive it until you are 65, unless your LTD has a different clause on the length of time a person can collect it. Also, you will have to continue to provide the LTD people with notes stating you are disabled too. You don't want to ever forget to provide them with updates either. Once those bums stop benefits because of not having that "disabled status" getting it resumed again is nearly impossible. They have incredible stall tactics.

My neighbor was an RN, she became disabled & was put on LTD. Her policy required that if she was off more than 6 months she had to file for SSD. They offered any assistance she needed to apply. She was awarded benefits & received them until she turned 65, along with her SSD check. When she turned 65 LTD stopped, her SSD check was increased to make up the difference.

Unum, which is one of the largest providers for LTD, was sued quite a few years ago. They were denying benefits with proper medical documentation from members, kept telling the people we didn't get it or we need more information, a new rep was now handling the claim it was unbelievable what they did to people for years. It came out that the reps were told by their superiors you deny & stall, they got nailed dead to rights when that came out.

If memory serves me right, lol, I binged on a show called Iron Fist or Iron Hand. It was totally not something I would ever watch as a weekly series. But, it sure got my interest, lol. I also use to watch a show called Person of Interest, it was a weird one too, lol. By the time I started watching it, it was into several seasons. I found it on Netflix one weekend at the lake & started at the very beginning & understood the show a little better. So, now you know my two out of the ordinary shows I binged on lol.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 10/5/2017 10:26:08 AM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 10/11/2017 2:12 PM (GMT -7)   
I have a surgery date! I have a surgery date!

It's not until Oct 31st, which annoyed me at first.....remember I walked into her office on 8/14 expecting a surgery date that would maybe be 2-3 weeks away. But anyway, I got over the annoyance, and have gone to my primary care doctor for my pre-op physical and tests (EKG--normal) and LOTS of blood work tests. They took NINE vials of blood! I think I lost weight from it. I see the PS again for a pre-op visit on 10/18.

Regarding my GBS, I have advanced to using a cane!! Woohoo, no more walker! I did like the walker for storage capabilities, but oh well, I happily give that up. I've seen no further improvement in my feet or hands, but my legs are feeling quite a bit stronger, and I just need the cane for balance. With GBS, you lose (forever) knee and ankle reflexes, and I'm not sure if those are needed for optimal balance or not.

I've been doing my pre-cancer exercises on most days. I can do the 50 ab crunches fairly easily. My splits are getting wider. I am up to 9 push ups! The 10-point balance routine is my nemesis. I have gotten noticeably better with all the moves before the foot pivot.....then it's a disaster that I have not been able to improve upon. I continue to do the moves, but I have not seen an ounce of improvement.......yet. I am remaining hopeful!

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 10/12/2017 10:56 AM (GMT -7)   
I do not think I have ever said "congrats on getting a surgery date" to anyone until now, lol. The date will be here before you know it.I can't believe it is already October, summer is gone. However, we are still pretty warm here so I am not complaining.

E, please contact your LTD company, you should continue receiving it along with SSD. The two combined should pay you what you earned while working. The only way it would not be like this is if your LTD policy states it.

What about the thyroid scan, any news on that?
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 10/15/2017 1:58 PM (GMT -7)   
I know, "congrats you're going to have surgery" sounds weird, but it is appropriate in my case! I really am excited to move on with reconstruction.

It IS in my LTD policy that I won't get LTD since my SSDI is higher. If my SSDI had been lower, the LTD would have made up the difference.

I'm not sure if I've mentioned it here before, but ever since having to spend five weeks in hospitals, totally dependent on others, I have been having "waking nightmares" where I am living a life like that and calling out to my nurse or aide "help!", and hearing them say they're "not willing to help me". I have sleeping nightmares like this as well. Before GBS, I NEVER thought of myself as helpless or that I'd ever be dependent on anyone, until maybe I was 100 years old (I come from a line of long-livers). I have to try really hard to push these thoughts out of my mind. It does no good to think them, and in fact probably does harm by leaving me feeling anxious and constantly aware of my mortality. Who needs that?

I'm trying to get as strong as possible before my Oct 31 surgery, especially anything to do with my arms chest as I know I won't be able to do hardly anything for 6 weeks or so afterward. So besides the push ups I try to do daily (some days I can do 10, other days only 5), I am using free weights and doing all kinds of exercises for my arms and chest muscles.

Susie, it is hideously hot here as well. I know that Fall supposedly arrived almost a month ago, but you'd never know it. I long for the cool weather, and especially for the very few cold days we get here in Florida.

Best of health and positive thoughts to all.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15149
   Posted 10/18/2017 9:43 AM (GMT -7)   
E, now I understand the LTD situation since they have this clause when SSD is awarded. Either way, I am thrilled for you to get those benefits. What a relief!!

I just clicked back to August 2016. All I can say is you have been on some journey since that time. Many bad situations & obstacles along the way. But, at the same time you have had blessings along the way & I will continue to pray this continues.

about the nightmares, it sounds like a combo of anxiety & post traumatic stress thrown in. Just to throw something in if this continues. There are members that were having some pretty bad issues & some had talk therapy & others learned how to practice Mildfullness. Learning how to stay in the moment. You have given a little hint about what all took place in that long hospitalization. Look it up if you are remotely interested. In 04 I started having horrible panic attacks, all health related. I had never had a panic attack in my life. I was a mess for some time.

I think it is fabulous that you are doing the exercises. It is wonderful for you in many ways. I think sometimes when we feel we are losing some control & then try to start taking back some at that control it is healthy for us.

Crazy Texas weather, shorts one day, jeans & a jacket the next. We never have much of a fall here, our seasons are not typical. Springs are very short lived just a few weeks then instant heat. Over the years our weather has certainly changed.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 158
   Posted 10/24/2017 10:15 AM (GMT -7)   
Let the countdown begin! One week from today I have my surgery. I had to think about that twice, as I almost said two weeks from today. It’s hard to believe it’s actually arriving after having taken so very long.

I think I do have posttraumatic stress from my long hospital stay. I find myself thinking about it so often. Up until I had cancer I was so active, and had so many plans for the future. Now I keep seeing hospital stays in my future, stays where I am paralyzed and having to rely on strangers for my every need. It’s making it hard to move forward. Hopefully, after my right breast reconstruction is done next week, and then within a couple weeks I’ll start getting the weekly “fill ups”, Maybe my mind will be able to start picturing my future as I once pictured it, since I’ll be able to picture my physical self as I once pictured it.

My exercises are going so-so. I can do the 50 sit ups every day although the last five or 10 of them are quite hard. The splits are still not full splits, and it always takes a lot of effort, but at least I’m doing them. The push-ups vary from day today. One day I can do four, the next day I can do 10, the next day I’m back to four. Of course my 10 point balance routine is where I am most limited. It is unknown whether I will ever get my balance back again. Since I literally can’t feel most parts of my feet, to stand on 1 foot and then try to shift my body into all kinds of different positions, raising and lowering the leg that’s in the air, it certainly doesn’t make a lot of sense that I should be able to do that while standing on a foot that basically has no feeling. But I’ll keep trying. All for now, it’s time to get back to doing those exercises.

Best of health and positive thoughts to all.
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