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 : 14812
   Posted 7/18/2017 1:57 PM (GMT -6)   
E, I don't know how you are holding it together with all of this extra BS from your job & the health insurance. This is just nuts. I do hope that your dr is going to appeal the claim for the Gaba stuff. In fact, I would call their office & verify that they are in the appeal process. In the past couple of years I have seen more & more of meds being denied to patients but once they appeal it things work out. Sick people should not be put through this kind of extra stress.

I think like you, if the dr is not concerned about the Taxol being cut short, I wouldn't worry either. Even though it was cut short, there is a reason we will never know as to why you did do the full course of it. Sure GB put the brakes on it, but there was another reason. Back in 2013 I had a new pain pump implanted. Less than a month after surgery I had a blood clot hit my lung, had a heart attack & COPD kicked in high gear. I was on a vent & went unresponsive. The drs told my husband if I had family out of town to call them because they had little hope for me. Then, the catheter clogged up with that pump & I had surgery scheduled to have it taken out & a new one put. One week before surgery I had a cyst on my back that became infected, so surgery was canceled. I did wound care for 3 months every day & it took a year for it to completely heal. My husband & I talked about it & decided that these incidents were an omen of not doing any more surgery unless its life or death type of thing. Now you understand my comment about the Taxol.

On a side note, I recently got on FaceBook saw a post on a young man that I know. Some of his friends had set up a GoFundMe acct. I had heard he was in a nursing home for 3-4 years & never knew why. He got West Nile virus & developed GB, he is paralyzed from the waist down in a wheelchair. Early on he had more paralysis but it improved somewhat to where he is now. They have found a rehab facility that treated GB patients such as him with an extensive rehab program. They do not accept his insurance & they are trying to raise $10,000 to get him in the facility. This guy is in his mid 40"s maybe, so very sad. I do hope they can raise the money. One of my old bosses was friends with his dad. My boss hired this kid one summer to run office errands. Here is someone with the possible shot at a cure & once again insurance is an obstacle, it blows my mind.

I have had my port since 05. I was getting an IV medication every 4 weeks for treatment of crohns. I have always had terrible veins. They were so bad oncology had a lot of trouble. They called my dr & suggested I get a port put in. Made my life & treatment easier for 3 1/2 years. Sometimes it bothers me & I have lost quite a bit of weight & it really sticks out.

Now soon you can move on to the next phase of finishing everything up relating to the breast cancer. Then, let the celebration begin!! Also, still praying for a nice SS check arriving in your checking acct. Its time for things to turn around for you.

Keep me posted please.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 7/18/2017 6:33 PM (GMT -6)   
Susie, you have been through SO MUCH, it makes me gratefully aware that all of my complaints are minor in comparison. With all that you, your husband, and your family members have endured, you are still such a positive and helpful person. I hope you know that you are appreciated.

I am very sorry to hear about your friend that has a severe case of GBS. For him to have been in a nursing home for 3-4 years, I am guessing his paralysis went up into his chest and stopped his breathing or his heart, causing him to be on machines, at least for awhile. The fact that he is in a wheelchair now and hopefully able to go to that extensive rehab program is such good news! Of course the insurance is the rub.

If you don't mind, what is his name? I am eager to donate to his GoFundMe account, and I'm sure many others would also donate. I have made donations to others through GoFundMe. Other than the rare cases of GBS that result in death, his case must be the next worst-case scenario. I only went through the truly hideous part for 2 weeks in a hospital, and then I was able to go for 3 weeks to a rehab hospital. I literally can't fathom the amount of suffering he has endured in the 3-4 years in a nursing home. I really hope the money is raised to get him into rehab. I know it made all the difference in my case.

Although I want to focus (in life, and in this chat), mainly on my breast cancer journey, since we're talking GBS, here is my update: all of my fingers are still numb. Typing is a nightmare, and I spend a ridiculous amount of time correcting mistakes because I cannot hit the correct keys. My hands feel like I'm wearing leather gloves all the time....so try to button a button, or unscrew a cap, tying a shoelace, or just about anything that requires dexterity, and it is an ordeal. The pain in my hands that previously had me ready to scream by 8pm and longing for relief in the form of someone chopping off my hands has subsided. Yeah! There is still pain, and it does get worse as the day goes on, but the pain meds are mostly able to manage the pain now, when they were unable to just a month ago.

I have some feeling back in my feet-- maybe 10%-- but it is all on the inside of my feet. The entire surface and more is numb and painful at the same time. This is a huge improvement. Two months ago it felt like from my knees down to my toes, that my legs had been replaced with large concrete pylons, that I somehow had to lift and plop down to move ahead in my walker. I had no perception of my calves or my ankles, let alone my feet. So the fact that it is only my feet that are 90% concrete blocks is a remarkable improvement. By the end of the day I have shooting pains up my calves and into my buttocks, but the pain meds help most of the time.

I still have severe balance problems. And if I can't see what my hands or feet are doing, I have no idea what they may be doing. It's difficult to describe. The physical therapists called it "proprioception", and that is what I've lost, and hopefully will get back.

One last, unrelated topic before I end this seemingly endless post, lol. I was reading through some of my earlier posts and saw where it was mentioned several times about my son's college graduation, and that getting pneumonia was going to cause me to miss it. (Of course, something worse caused me to miss it.) However, I did get to see it live! The college had a "live stream" of it, and so I saw it in real time. I had just gotten out of the hospital a couple days before, and was dependent on an aid for EVERYTHING. My "aids" were my husband and older son (who came home for 3 weeks to help take care of me when I was at my worst at home), but both of them were going to the graduation ceremony for my younger son. So my best friend from college came and spent a couple days with me and was my aid--to eat, to go to the bathroom, etc. She and I both watched the ceremony and had much better views than if I'd been there in person, as their seats were quite high up. I got to see an up-close view of him walking up to the stage and shaking hands with a couple men, and receive his diploma, while on the screen it showed his name and Magna Cum Laude under it.

Okay I have babbled on so much that I probably have alienated any readers who once had interest. Sorry!

Best of health and positive thoughts to all.

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 7/19/2017 10:44 AM (GMT -6)   
Wow, I am so excited for you that you got to view the graduation, incredible. Although you wanted to be there in person, you had the best view at a distance. I would not have ever thought on that happening but it makes it so much easier for families that cannot be there for the big event.

I think its good that you are posting about the GB. This is another event that happened with the breast cancer. Your entire story is a wealth of information for others to read. I know you have improved but you still have a lot of deficits from GB. We do not often realize how things we take for granted in our every day life, suddenly either not being able to do them at all or be very limited. I just hope that you can get the gel & it helps with your hands. I can't fathom what you have on your plate. The guy's name is Brian Strein on FB. I have not checked lately to see how close they are to the goal. I just get disgusted that he has a chance of getting better & insurance issues are standing in his way. I will not get on my soapbox about insurance & healthcare. Yes, you are correct at how the GB struck Brian.

My situation is what it is. I have learned to deal with what I can & leave the rest in his hands. My turning point was watching so many life & death situations with my brother over the years. Even his drs would shake their head in amazement. It has taken me lots of years to to understand that I cannot control everything, lol.

Hang in there things will change....
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 7/23/2017 1:23 PM (GMT -6)   
Today is Sunday, and amazingly I believe I am about to have my first appointment free week in close to eleven months! Woohoo!

I COULD be going to PT/OT, for my Guillain Barre, but I've decided just to concentrate on treating my cancer until after I've healed from the upcoming reconstruction surgery, which is still weeks away, as I have to heal from my radiation before my PS will see me. My breast and underarm are bright red and peeling a little bit every day, but no more bleeding. And, oh, my upper back did get burned as well! I hadn't noticed because I rarely look at myself naked in the mirror, from all angles. Actually, it tanned more than burned. Just about a three inch wide stripe of darker skin across my upper back.

I am doing some at home PT/OT so that I don't backslide with the progress I've made. Even though this week I'll be having no appointments, I will be doing other things I dread-- trying to sort out the endless paperwork that I need to complete to send to my employer, the insurance company handling my LTD, and the company handling my claim for disability. My employer is still saying I am a "no show" from work since June 22, even though the company they employ to handle my LTD acknowledges that I will be out until at least November. They do not and will not communicate with each other. Also, I should find out this coming week if ONE of my many problems is fixed-- the one where my health insurance company is saying I owe for 3 months of payments that I've already paid. When the mail comes this week everyone may hear a woman screaming all the way from Florida if they once again say I am past due and threaten to end my coverage. Wish me luck!

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 7/24/2017 1:48 PM (GMT -6)   
I screamed as loud and long as I could, but I don't think there were even any close neighbors to hear it: Again today my mail brought me a bill from my health insurance company for the months that were already paid through my STD paychecks. I was so mad I was shaking. I called the company again, and it's the same story--they understand the problem, but will have to reach out to a supervisor (who is never available), to get it fixed.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 7/27/2017 2:38 PM (GMT -6)   
Well, I'm into day four of my first doctor visit free week in about eleven months, and it has been very stressful. I have spent so much time every day with either phone calls or emails or faxes regarding all the problems with my employer, with the ins. company handling my LTD, and with the company that bills me for my health ins ---STILL trying to double bill me for 3 months I already paid for. I was sitting on the couch earlier and my husband had gone out for the mail, and as he came toward me saying "this one's for you"...I started to curl up in a ball and well up with tears, not even knowing who it was from. I told him not to give it to me, just to sit it on the kitchen counter. I was right to fear the mail, as it's from one of the companies making my life intolerable. I haven't opened it yet.

I want to just GIVE UP, and spend no more stressful time trying to fix any problems, and let whatever happens, happen. My employer will eventually fire me since they think I am just "not showing up" for work since June 22, and my health insurance will eventually cut off my coverage since they think I have been behind in payments for 3 months. I just have nothing left inside me to keep dealing with problems.

Post Edited (exqualls) : 7/27/2017 2:44:00 PM (GMT-6)


straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 7/28/2017 12:08 PM (GMT -6)   
Oh E, I wish there was something I could say or do. All of this employer & insurance BS is completely out of hand. Is there no one higher up the food chain that you can contact? Obviously these morons do not have a clue, the right hand does not know what the left hand is doing. I am guessing you have already provided off work status to your employer multiple times. This is just ridiculous. I will keep praying for a resolution to this entire mess in your favor. Give yourself a break for a few days. Something to consider on the employment, say they do try to fire you, I would sure talk to an atty if that ends up happening (consults are usually free of charge). You have crossed your t's & dotted your i's, provided documentation, just a thought, under wrongful termination.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/1/2017 10:31 AM (GMT -6)   
I forgot to mention that my insurance company won't cover the compound cream for my hands. Oh well. I do have pain pills, and they work. I just sure hope I don't get addicted. Also, the insurance company won't cover Horizant, which is the main drug for Guillaine Barre Syndrome. Horizant is just Gabapentin in extended release form, so I don't suffer the side effects full force. I see my neurologist today so I'll tell him I have to switch back to Gabapentin.

In 2 weeks I see my Plastic Surgeon. Yeah!!! I'm so happy to take a step with my breast reconstruction finally.

Best of health and positive thoughts to all who are reading.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/2/2017 4:24 PM (GMT -6)   
A bit of good news! Yesterday we got the judge's ruling and my husband got his SSDI. No check, though, and no idea what amount he'll get. The letter said in a few weeks he'd get a letter from a case worker at the SSA. So thank the Lord! That is literally the first good news we've gotten in 15 years. (I know it's great news that my son got into a great law school with an even greater scholarship, but I consider that HIS good news). Nothing but bad things have happened to my husband and I for such a long time.

Best of health and positive thoughts to all who are reading.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/5/2017 9:26 AM (GMT -6)   
E, indeed, thank the Lord for this. You all have needed some good news for a very, very long time. I am so, so happy & excited for you all at the same time. Keep checking the bank acct too. Finally, you can take a decent sigh of relief. I do know in some instances that people collect more per month on SSD than regular social security retirement, which can be a plus too. Not sure when his Medicare will kick in. It kicks in 2 yrs from the date of disability that SSA gives. Sometimes SSD gives their own date of disability, so look for the date they say became disabled. He will get back pay from the date of disability. They will withhold x amount for atty fees from the check. But, the atty will have to file a fee petition to prove up his time spent on the file too. SSD allows only so much time for each thing the atty does on the file, such as making phone calls, visits with the client, reviewing the file & ect.. This is what we had to do when I worked, I do not know if it has changed, I really kind of doubt it.

Whew, I am excited that you are going to get to move forward with the treatment & now this SSD award. Kudos for your son getting the scholarship & the great law school. Sending you a big ole cyber hug!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/6/2017 9:08 PM (GMT -6)   
Thank you, Susie, it is definitely quite a load off. The amount of back pay he will be getting will pay off some of our bills-- far from paying them all off. The really great change in our lives will be him getting a monthly check that will actually be able to pay a good portion of our monthly bills, so our debt will build up much more slowly. That is the biggest relief for me.

So as a woman in her mid-50s, who has always had to watch what I eat and also exercise quite a lot to keep from becoming obese, obviously I have gained a lot of weight in the last 10-11 months. First the mastectomy limited all exercise for awhile. Then when I was healed from that, the chemo treatment made me so fatigued I didn't feel like exercising. And then the Guillain Barre paralyzed me (which is now mostly gone, just my feet and hands are numb), but I still do not have my balance back. I have to use a walker, but I have found a way to start taking some of these extra pounds off.

Inside my house there's an uninterrupted path that I can take--through the family room, then the kitchen and breakfast room, through the dining room, then living room and back to where I started. For a half hour each day I have been walking that path with my walker as quickly as I can, which is pretty quick. I actually build up a sweat and get my heart rate up! And I am thrilled to report that I have lost 14 pounds!! I'd like to lose another ten, which should happen if I keep this up, maybe going a bit longer, like 40 minutes.

So, tomorrow is Monday and I start my dreaded phone calls and emails again about my insurance and LOA, etc. However, my last email got them to finally give me the name of the person who can presumably provide the proof that I need to show that I do not owe any back health insurance bills. On Friday I called the woman but had to leave a message on her voice mail. Wish me luck for tomorrow's call!

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/7/2017 11:23 AM (GMT -6)   
I found out today that my employer is terminating me as of today, since they received the doctors' information confirming they have no idea when I'll be able to return. She said all benefits will end as of Aug. 31.

I feel rather helpless/hopeless/panicky/depressed/overwhelmed at the moment!

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 8/7/2017 1:01 PM (GMT -6)   
Oh my, I just don't know what to think right now that would be of any real value to you for the moment. I don't know take some time to deal with all of this. I remember those feelings when I had to stop working. Certainly was not something I had much control over.

Still some positive things have happened for you recently, so don't lose sight of those. Concentrate on finishing out your recovery. LTD will still remain effect as long as the dr deems you unable to work.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/13/2017 8:02 PM (GMT -6)   
I took advantage of a free service offered by the Cancer Patient Support Services, and had an appointed a few days ago with a counselor. Most of my problems don't stem from cancer, but that didn't matter. The very nice counselor let me go on and on for an hour and a half (!) about everything that was wrong in my life before cancer, and then everything that has gone wrong since. It helps so much to just say things out loud! So if anyone else has cancer, most major hospitals offer support services like this, and I regret waiting so long to take advantage of this. I get 3 more free visits.

Tomorrow I see my plastic surgeon so she can schedule a surgery date to exchange the failed tissue expander in my right breast. I have lived with this monstrosity for too long! When did it start to deflate? December? January? I'd have to look back at my posts, but it's been a long time living like this.

Since my termination, I'll have to use COBRA to keep the same insurance going-- no starting over with a new out of pocket deductible to meet and no co-pays, at least to the end of this year. And the cost for COBRA is almost FOUR times what I had been paying for insurance. Everything that my husband will be getting in SSDI benefits will go to pay for the higher insurance, instead of helping get us out of debt.
Pray for us, folks! We need it!

Best of health and positive thoughts to all.

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/14/2017 2:50 PM (GMT -6)   
So I saw the PS today, but I did not get a date for the surgery cry
Even though I told my neuro I'd be having this reconstruction done before I did any further IVIG treatment, and he was okay with me having surgery, and even though my surgeon thought it was fine to take out my port during the same reconstruction (either the PS could do it, if she was comfortable doing it, or he would pop into my reconstruction and take the port out himself)......all of which I told my PS, she insists on checking with them first before scheduling a surgery.

So I'm unhappy I didn't leave her office with a date, but I know she's an extremely cautious person, and that's what I want in a doctor. Her work is really great, too. When I had my mastectomy it was a tag team of doctors. My surgeon did the mastectomies, then she added alloderm (cadaver skin) and sewed me up. The first time I saw my chest post surgery, I was horrified. It wasn't at all because I was flat chested after being a full-C my whole life, and it wasn't because I had scars across my chest that were at the moment bright red. It was because the scars weren't strictly vertical or horizontal. For the surgeon to get all the tissue and tumors out, in some places he went diagonal......BUT he may have cut me that way, however the PS sewed me up and added the alloderm where needed. The scars now are as close to invisible as you can imagine. And this is after having the tissue expander stretching the skin every week as it built up my left boob. (My poor right boob.... it's been through so much). I had thought that maybe when I went in for the "fill ups" it would enlarge the scars or cause stretch marks, and neither of those happened.

So, she says she'll call me later in the week after she's had a chance to confirm with all my other doctors that surgery is okay.

Best of health and positive thoughts to all.

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 8/16/2017 9:32 AM (GMT -6)   
E, I m sorry that you didn't get your surgery date at the appt. You have had so many set backs since this entire process has started. There will be a light at the end of the tunnel. I would give the PS a week to gather her info & then I would call her office. I understand that she is going to be contacting other drs, however, one thing I do know, if a dr is in his office he doesn't put off a call from a peer. Wow, from your description of the scarring, it does sound like she is excellent.

As for Cobra insurance, yes it is very expensive. Once you are finished with all of your care perhaps then you can look at other options. Just allow yourself time to carefully check out all your options. Will your husband have a long wait before he is entitled to Medicare? I know its 24 months from the date of the disability. Insurance is such a sore spot with me. When I look at what we pay yearly for all of the insurance we have to have, it is our largest expense!! We pay insurance for a home in town & a small lake place. I told my husband the other day, hell we are going to the poor house because of insurance. It is disgusting.

Texas heat has been doing a number on me. I love being outside but I am too old for this type of heat. I do not like being cooped up inside. AC tends to make these older bones hurt worse, lol. I seem to not be able to find my happy median, lol.

Will continue to keep you & yours in my prayers.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/17/2017 5:04 PM (GMT -6)   
Yep, insurance is sore spot for so many of us! Between health insurance, car insurance, home insurance, PAF insurance, flood insurance...I'm probably leaving some out, too!

My husband will be able to get Medicare starting in February, so I won't have to have him on my COBRA for that long. I "think" COBRA goes month to month, is that right? We had an insurance guy over to the house to explain the options for Medicare supplements, and maybe he spoke too quickly, or assumed we had some working knowledge of Medicare, but everything he said was so confusing. So many different plans to choose from.... He'll be coming back in December, so we have to study all the material he left with us.

It's Thursday night and my PS still doesn't have a surgery date for me. For some reason this has really bothered me this week.....to see her on Monday, and have most of the week go by and I HAVE NO PLAN AHEAD OF ME. I ALWAYS have plans-- but I can't plan anything without having a surgery date.

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 8/18/2017 9:55 AM (GMT -6)   
I do believe you are right about Cobra, its a month to month thing. When you are ready to switch from COBRA to something in the market place, do not let the COBRA coverage lapse before getting the other. You may be required to show proof that you had what they call "credible coverage" to qualify. They may no longer require this, I am not sure. I was able to go online to my insurance & print this letter off. I had to do this with my supplemental policy to Medicare.

For several years even though Medicare was my primary insurance, we kept me covered under husband's employer insurance after he retired. Mainly, because of the script card & at the time I was on lots & lots of expensive medication. All of that was good until my monthly premium went from $620 a month to $1,220 a month. Yep, you read that right. They doubled the monthly cost, they wanted me off their books.

When I got coverage for my supplemental to Medicare, I do pay more because I am not 65 yet. I bought a policy through AARP, they pick up the other 20% Medicare does not pay. We pay $16 a year to be an AARP member. With both of us having health issues, I wanted something that paid the best. My husband is over 65 so he has no deductibles at all. His supplemental picks those up, a perk for being 65 on the plan he is on. I have read here at HW that some members used a broker. I will tell you the supplemental plans to Medicare vary in cost depending on the state & coverage selected.

Not sure if I asked before, is your husband a veteran? If he is & if his insulin or any medications he is on is sky high a month, he should check with them to see what his meds would cost a month. In my husband's case he was on 2 insulin's & they cost $1,500 a month. It did not take long for him to hit the donut hole & we simply could not afford it. He went out to the local VA here & they did a physical & he took all of his medicine bottles with him. He gets all of his meds from the VA. If he gets a new script for something long term he takes it the dr there. Anyway, sorry for being long winded, but this may be an option for hubby with meds.

I hope your next post will be including a surgery date!!!
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/21/2017 12:23 PM (GMT -6)   
No date yet!

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/23/2017 11:09 AM (GMT -6)   
No date yet!
I literally sat around waiting by the phone, feeling like life can't go on in any way until I have that date. But I had another (free!) counseling session yesterday afternoon, so that made me get out of the house.

I told the counselor how I felt so paralyzed, and I don't know exactly what she said, but I don't feel that way any longer. In just 2 visits with her --both were an hour and a half!--I managed to fill her in on everything that I have covered on this forum in the last year! So she knows how desperately sad I am over my older son, and my marriage isn't great, and that I feel like I'm pinning all my happiness on my younger son, now in law school in Wash DC. I think it sounds PATHETIC for a parent to pin their own future, their own happiness on their child. I certainly don't want my son to feel the pressure to "be my whole life".

So anyway, the counselor had me considering the things that made me happy in life before cancer and GBS took over and (especially the GBS) STOPPED my life, and encouraged me to find some way to participate in one or more of them, even with my limitations. I am feeling much more positive and hopeful now!

So PLEASE, anyone with cancer who needs a counselor but has no money for it, check with your doctor to see what services are provided by the cancer society in your area. I am embarrassed I waited soooooo long before ever opening the booklet and making the appointment. There are lots of other services and discounts for all kinds of things that are offered to us, just because we have cancer!

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 8/30/2017 6:58 AM (GMT -6)   
E, I am so glad you took advantage of these sessions. Do not be embarrassed because you didn't check things out earlier. They say things happen for a reason & sometimes we never know the reason. Who knows had you went earlier you may not have reaped the benefits you need so much now, you will never know. I think it's encouraging that you are going to give some attention to yourself. You had so much hitting you from every angle you didn't have time to come up for air.

Any news yet on a surgery date? Does the PS have email available to patients? If so maybe send an email.

Keep us posted please.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 8/30/2017 10:01 AM (GMT -6)   
No freaking date yet!!! There's no email. I have called near the end of the first week, then the end of the 2nd week, so I'll wait a couple days and call at the end of this, the 3rd week. It is taking ALL my self-control not to harass the office daily!

straydog
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Date Joined Feb 2003
Total Posts : 14812
   Posted 8/31/2017 8:59 AM (GMT -6)   
Is there any way possible that you can go to the office & let them know none of your calls has been returned & what is happening is not acceptable. Another thought, can you check to see if she made contact with the other dr? Just thought about that.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 9/1/2017 3:09 PM (GMT -6)   
I can't drive yet, the GBS still has my feet paralyzed, and I finally decided to ask my husband to drive there (it's a LONG drive to the PS) to find out in person what particular information is still needed from which doctors. I decided this yesterday, and yesterday and today we have had hour after hour or torrential rain, thunder, and lightning.

Susie, I know you're in Texas, but I don't know if you're experiencing any of the effects of Hurricane Harvey. I hope that you are fine. I really empathize with hurricane survivors. It's been a very long time, but I dealt with victims of Hurricane Hugo on a daily basis for weeks and I can still feel their desperation and sense of loss and sheer confusion. It was dreadful for ME to experience it second-hand!

PS, I REALLY believe that the delay is due to GBS. Most doctors know nothing about it, and have to research it before making decisions. Apparently, different anesthesia has to be used.

I need to get my "Lauren's Hope" medical alert bracelet updated that I have GBS. I got one after I had all my lymph nodes removed during the mastectomies, since I can't have shots in the left arm or BP taken on that arm. If I'm unconscious, who'd know? I have to put on the bracelet that I have GBS, as apparently there are a lot of restrictions as to what medical treatment I may or may not have. Example, if I'm in a car accident, or any accident that involves metal causing a laceration, one of the first things a doctor would do is a tetanus shot. I'm not allowed to have one!

I went to the Lauren's Hope website to try to just order a new tag part, as I don't need another bracelet, but I couldn't see where that was an option. It probably is, but my mind is scattered- to put it mildly- so I didn't find out how to get a new tag made to add GBS to it.

Post Edited (exqualls) : 9/1/2017 6:50:32 PM (GMT-6)


exqualls
Regular Member


Date Joined Aug 2016
Total Posts : 144
   Posted 9/4/2017 12:56 PM (GMT -6)   
Well, I haven't been able to keep the positive vibe going. I vacillate between more bad days than good. On the good days I try to do pre-cancer activities--with whatever limitations I now have. For instance, EVERY day up until 9/27/16, the day before my mastectomies, I had a few daily rituals. I used to do splits--forward and to each side, 50 sit ups within a minute, 50 push ups (military style, up on my toes, no knees touching the ground)-not timed, and my favorite, a 10 point balance routine I learned from karate (I have a black belt). From a defensive stance, every move is made on one leg. First on one leg, then the other. The routine involves lifting one leg up and into a precise position, holding it at least ten seconds, then moving that leg into a different position and holding at least ten, pivoting on the foot on the floor while putting the in-air leg into ten different positions and holding it...and so on, without wobbling, and all on one foot, of course. Obviously this involves incredible balance, control and strength in feet and legs and buttocks, and core ab strength.

These things were done every day and not considered my exercise for the day. To actually burn calories mostly I chose between kickboxing or an hour-long fast walk with a neighbor.

So, I used to do all these things, and as of a week ago I could do none. I was afraid to even try splits, as I wasn't sure I'd be able to even get up off the floor afterward, due to the GBS. When I was in the rehab hospital we practiced putting me on the floor and seeing if I could get up by myself. I couldn't. But I've been out of the hospital 4 months now, and have improved so much from the GBS, I decided to try all my previous daily rituals I detailed in the paragraph above.

I started with splits. I couldn't get down anywhere near to a full 180 degree split. Maybe 90-100 degrees, and it hurt. I used to get into that 180 degree split and bend and reach forward until my stomach was flat on the floor and stay there 30 seconds. Now, with my limited stretch which really pulls in both legs, I can barely lean forward at all. Then I try to reach my hands to my toes and lay my stomach on my leg, each side. I can barely reach my toes, and and I can't get my stomach down much at all. I go through the motions of the side splits with the same type of limitations. I've been doing this every day and it hasn't gotten any easier and my splits haven't gotten wider. I do remember from years ago, getting up to the level of full splits that I finally got to, took a LONG TIME. And once I got there I had to do it every day in order not to regress.

To get up to doing 50 ab crunches in a minute didn't take long at all in the past. When I was at my fittest I could maybe do 65-70 in a minute. But when I tried my crunches last week I could do only 5. FIVE. But I've been doing them every day, and pretty quickly got to 20, and yesterday I got to 35. I'm not timing myself--that will come later. My goal is to do one more than I did the day before. It is VERY hard. I am groaning and really working to get through the last few sit ups.

So I've made no progress since I re-started my splits/stretches, but I continue to do it and I presume I will slowly be able to get to the 180 degrees, and stomach to the floor level EVENTUALLY. Like it could take a year...... or more! But I am determined to get back to that level.

The ab crunches I am certain I will get back to my previous level within another month or so.

Now for the push ups. I can do zero. I figured this would be hard, since my chest was operated on from armpit to armpit. Twenty years ago, when I first started push ups I also could do NONE. Not even girl style, with my knees on the floor. I remember back then I just tried every day and suddenly one day I could do one, then another, and eventually built up to fifty, no knees on the floor push ups. I think it took nearly a year to get to that level. I think now I can do ZERO for many reasons.....one, they are naturally the hardest exercise I ever did, period. Two, I've not been in an exercise program for almost a year now. Three, the cancer surgery. And four, the GBS. I hadn't realized how having numb fingers and feet would effect doing a push up. But when I tried doing that ONE last week, I wobbled and fell to the floor immediately, and I realized that since I can't feel my feet, and I lost my proprioception, my mind really couldn't tell that my feet really were holding up my legs... I couldn't feel WHAT my feet were doing......they could have been off in space somewhere. All I felt in the half-second or so that I was in the push-up position was that my stomach muscles couldn't handle it, my arms wobbled on my unfeeling hands, and I experienced fear as to what my feet were doing.

I'm ashamed of myself for not trying again since that failure last week, but I AM going to begin trying again, today.

My last and favorite of my previous daily rituals was the 10 point, one-leg balance routine. It had taken years to get to the level of doing that, so it is no surprise that I could not do it at all on the first day. I have continued to try everyday, and I can get into the first position for a few seconds until I lose balance, and strength, and have to put my foot down. But I keep at it and go on to the second position, and I get to it and wobble, then have to either put my leg back down, or have to reach my hand to a counter not to fall. I proceed like this through all ten positions, and I fail at them all, every day. But on most days I can see the smallest of improvements in some aspect or other. Maybe I can hold a position for another second or two before I wobble and put my foot down. Maybe I can do the pivot without holding onto furniture --for a brief second. Maybe I can extend the lifted leg higher. Overall, it's a complete failure of balance and strength and flexibility for my 10 point routine. But I am so happy that I am doing it again every day! I really used to love doing it. For some reason I would always do it in the kitchen. Whenever I'd have to be in the kitchen for a few minutes or so, probably waiting on the microwave, I would use that time to do the routine on each leg, and I loved it. I loved knowing I had the control and balance and strength and flexibility to do this. Soooooo, as pathetic and wobbly as my routine is now, I do actually love going through the ten points and at least TRYING them, and seeing some improvements. It will depend on my GBS whether I will ever be able to do it as perfectly as before.

While I am trying these various exercises, that is when I have my positive vibe going. But that's a small part of the day. Mostly I still feel like I'm in a holding pattern, and that is an unpleasant, depressing feeling.

PS-- has anyone heard from Susie/Straydog, since Hurricane Harvey? I am worried.

Post Edited (exqualls) : 9/4/2017 8:29:38 PM (GMT-6)

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