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#1 Guest_billronm_*

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Posted 09 November 2013 - 11:29 PM

Hi everyone,

  I'm having a terrible time trying to figure out all these new changes on my computer. I have to call my computer tech and get things straightened out. That usually involves over an hour on the phone and I just haven't been up to it. Pat I got your message but I can't figure out how to get back to you. I'm so sorry I haven't been around, you all know murpheys law, well that little bastard arrested me. I'll fill you all in later. Right now I can't function very well, 3 weeks ago we had to put our little cocker spaniel Annie to sleep. We had no clue she was even sick, then one night 3 weeks ago she couldn't get up so we rushed her to our vet after bw and x-rays we could see what was wrong, they could have done a lot of surgery but she probably wouldn't have survived it, if she did she would have no quality of life, a lot of pain and probably only lived about 3 more months.So we had to make that horrible decision, We didn't want her in pain so we had her put to sleep right then. I just can't stop crying or even function. She was like our child, so good so smart it was scary. Having cml and coping with the side effects is rough and Annie always knew when I needed her. I'm sure a lot of you have pets and know just how comforting they can be. Love Billie



#2 mariebow

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Posted 09 November 2013 - 11:38 PM

Billie I am so sorry about annie,I have been there two times and I have a lovebird now. I cannot get on this board with my son's laptop,mine is in the shop and it may not get fixed,but I can get on this site with my Xoom tablet.



#3 Guest_billronm_*

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Posted 10 November 2013 - 12:00 AM

I'm not sure if I'm answering this right,

  As most of you all know in 1998 my son was in a car accident and severed his brain stem he was in a coma for 3 weeks, nobody expected him to live but he did. I have him in a wonderful facility for people with brain injuries. Phycially he is pretty helpless, mentally he's about 95%. He was 29 when he had his accident. 2 months ago his son, my grandson who is 21 was hit by a car it was also a closed head injury and he was in a coma for 3 days, they did surgury right away and were able to remove a large bloodclot he came out of the coma and he is going to be 100% okay Thank God! I've just been walking around in a fog. I have been feeling so alone trying to cope with all this, Then I get messages from my wonderful friends from the board today and I remembered I'm not alone at all. Love Billie



#4 Guest_billronm_*

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Posted 10 November 2013 - 12:21 AM

Hi Marie,

  I couldn't get on-line because lls said my browser was outdated, I had internet explorer and everything was working great, so I had to go to google to get back on-line with lls. Now I'm having all kinds of trouble trying to figure out google I hate it!  I have Kapersky for  my security and the geek squad for other computer problems, I call them and they can get right into my computer here at home. I think I pay about $200.00 a year but it's been worth it for me. I just hate windows 7!

   How long was it before you could accept the fact that your pet isn't with you anymore? It's always been Ron Annie and Me and if Annie couldn't go then we didn't go. But she went a lot of places.



#5 mariebow

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Posted 10 November 2013 - 02:29 PM

Billie it will take time, Annie had a good life with you and Ron from just reading your last post,you two made her life richer,remember that,I found out years ago,when I lost Bow that who would have thought that you could grieve so over a dog,but when I losr Bow,it actually felt like my heart was being ripped right out of my chest, my sister laughed at me because I cried so hard,but others felt bad for me, Oh wow I hope I am not be too dramatic. Hugs and a big kiss on your forehead. Marie



#6 Susan61

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Posted 10 November 2013 - 02:58 PM

Hi Billie:  So sorry for all you have been going through.  It seems like everyone is going through something right now at the same time.  I have not been on here that much either.  Trying to handle a multitude of issues myself.

Just keep Thanking God for all the good things that are coming out of all your trials.  I try to stay positive, but its hard sometimes.  Gary is doing great with his Chemo for the Bladder Cancer.  He has three more courses of treatment left.

     So glad to see you posting again.  I was getting ready to send you a personal message along with some others

A lot of our old-time regular people have not been around in awhile.

    Take Care and Love to You Too.

Susan



#7 hannibellemo

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Posted 10 November 2013 - 07:15 PM

Billie,

I knew there had to be some reason you weren't posting! I'm so sorry to hear about your grandson. Your son's accident was a tragedy, then to add his son's accident on top is almost more than one can bear.

This is not to forget or make light of the loss of Annie. I know how important pets are to most of us! There are pets who come into our lives and quietly leave, others leave deep paw prints on our hearts. Annie, obviously, left very deep paw prints. My most sincere condolences to you and Ron.

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#8 Guest_billronm_*

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Posted 10 November 2013 - 09:09 PM

Thank you everybody,

     We'll get through this, just like you all do, I know everybody else gets overwhelmed, and you all stay strong so I will too. When I got the call about my grandson I swear I felt like something in my head just floated right up into the air and my mind couldn't understand what my son was telling me. Now that we know he is going to be fine, I can really call myself an airhead. His accident was Sept. 17th. He can go back to work in a month, but he has to take another driving test. He lives at home and he's in lockdown he calls it. 21 years old and he's grounded so he's going crazy and making everybody else crazy too. We are just so thankful he is okay.

  Why is my computer underlining some words? I swear there is a voodoo curse on this thing.       lots of love Billie



#9 pamsouth

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Posted 11 November 2013 - 11:16 AM

Hi Billie,

We use to have a lot of trouble with our HP and windows and hired some company to keep it clean.  But it was very expensive and still a nusiance.  About three years ago, I finally went to a Mavcbook Pro, and use Safari.  I have had it three years and no problems.  I use it like a desk top.  It sits on my desk and I have a wireless keyboard. Plus a chair that fits my body.   Otherwise typing on the hard surface of the laptop hurts my arthritic hands and poor posture gets my spine out of lignment 

Sorry about your fur baby and all.  I believe there is a Heaven for them.    I like to call it crossing over brainbow bridge.  I will send my fur critters out to meet Annie at rainbow bridge and light a candle for Annie!! 

After dealing with your son's accident, and than your grandsons accident, must have been frightening like reliving it all over again.

It is enough to deal with our health issues and then have something like that happen.   Seems this body doesn't take a lot of stress anymore, to hard on the body parts.  I try to take breaks, meditate and think of something that make my body and mind feel better.  We have some trees and a creek about 40 feet out our back door.  I took some pictures of the beautiful fall leave and my Mr Herchel 20 lb poodle looking out the sunroom at the critters.  They usually come up out of the creek at night at Mr Herchel thinks he is a big dude and runs out the dog door to chase them away, he does have a loud bark.  We have an open field behind the trees and when the leave shed you can sometimes see a deer and or a fox.  So I take short breaks when stressing and to refocus on something to take my mind off of stress related things. 

Had my daughter and family over for Chilie Dinner yesterday.  It was good to see them.  My 20 year old Grandson Alex has a new girlfriend.  She is a beauty, love her.  Problem being she won't be 18 until April and graduate from highschool this next May/June.  So her daddy is still keeping tight reins on her.  Make the kids unhappy but we keep telling them.  She only a few months away from 18 and graduating.  Aww Young Love, I guess I have forgotten.  Than I look at the sparkle in their eyes.  Tried to talk to my son-in-law who is a gastrology doctor about some of the medical issues and my daughter the nurse, fitness trainer and nutritient consultant.  They get part of it, but still not up on these new drugs and the protocol.  When I say clinical trial they get confused.  Then I explaine how long the drugs been studied and the side effects of each one.  The doc admires people who are pioneers still don't think they really got it.  But they have been trained that way and he deals with GI issues.  Glad to see my daughter is leaning a little more holistic.  She brought me some herbs.  Was going to take her to the doc with me, but don't think that would be a good ideal.  That last time I did that after diagnoses in 2005 we weren't speaking.  Difference of medical opionion. 

Take Care Pam South


PamSouth


#10 Marnie

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Posted 12 November 2013 - 10:16 PM

Billie. . .sorry.. .I have been really out of touch.  Just read your post today.  So sorry to hear about Annie.  It was rough when we had to put our cats down last year and the year before that.  Glad to hear that your grandson is recovering well.  Must have been a very scary time.

Sending lots of good thoughts and well-wishes your way.  Seems like the last year has been rough for lots of people.  Feels like I've been in survival mode for quite awhile. . .

All the best,

Marnie



#11 Pin

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Posted 12 November 2013 - 11:39 PM

Billie - it's lovely to hear from you again! I'm so sorry about Annie, that must have been heartbreaking for you - my pets are my children too, it was pure agony for me when I had my little girl put down. We grew up together and when I moved out of my family home I took her with me, so she was like my sister and child all rolled into one. Go easy on yourself, it is a very, very difficult time and I know how important Annie was to you both I'm sorry to hear about your grandson too, but very, very glad to hear that he is going to be ok.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#12 alexamay09

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Posted 13 November 2013 - 03:34 PM

Hi Billie. Goodness you have been through the mill lately! So glad your grandson is ok. It must have been devastating when your son was injured too. I am so glad that he recovered as much as he did. Life is tough. Its also natural to feel sad at the loss of a pet. My 18 year old cat passed away recently and I was very upset. I have had multiple pets my whole life and its the price we pay   take care and be kind to yourself. Blessings. Xx



#13 Guest_billronm_*

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Posted 13 November 2013 - 11:06 PM

Thank you Pam, Marnie,Pin,& Alex,

  We're trying to hang in there.    I hope everybody is feeling okay, I'm doing good except for the low iron, I have to start iron infusions again next week, I'll get one a week for 4 weeks. At least their not giving the steroids this time (hopefully) unless I have another reaction. I'm so distorted and out of shape from the last 8 treatments I had. I look like I was made out of silly putty. When they told me I had to have steroid infusions with the iron, I knew I would look like a scientific experiment, and I do. Anybody know how long I'll look this? I've been getting chest x-rays every month, since I had that pe last March. I've gotten some fluid around my lung but nothing to worry about. I don't know how long this will go on, Onc said that's the only way he'll let me stay on Sprycel for now. I guess that's the plan him and that onc I saw in pittsburg came up with.

    Take care everyone    Billie



#14 hannibellemo

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Posted 14 November 2013 - 06:30 PM

Something to think about, Billie. I told my onc if I experience symptoms again of a PE, and I did very early on the first time, he'll be the first to know and we can do x-rays then. He agreed, chest x-rays that frequently are not really a good thing. Excessive radiation can cause leukemia, you know! 

Take care!

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#15 Marnie

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Posted 14 November 2013 - 06:55 PM

Hey, Pat. . .

Can I pick your brain (and Billie's too). . .

What does PE feel like?  I'm having some issues (aside from the annoying rash that won't go away), and am getting paranoid that I might have PE, pneumonia, or asthma.  Or maybe I'm just being a baby and have a bad cold that's gone on for months.

I am coughing all the time, especially in the morning, bringing up crud, though I have to work at it.  Feels like I can't fill my lungs completely.  We went for a hike last weekend and I could hardly go uphill. . we have thin atmosphere in Colo, but haven't ever had problems with breathing before.  Did a bootcamp workout Monday and had to sit out one exercise because I just couldn't get enough breath.  Yes, I'm in lousy shape, but never ever in my life had to sit out on a workout.  At night when I am laying down, it feels like there is stuff in my lungs.  During the day when I'm standing up, it feels funny when I breathe.

My onc hears nothing when he listens to my lungs.  I wonder how he can't hear anything, because to me, it sure feels like it sounds funny when I breathe. 

I have always been really bad about not seeing a doc until things get really, really bad.  So I keep waiting to see if this is just a cold that will clear up.  I've just never had my lungs feel like I can't get breath in before.  But it's not bad enough that it feels like it's serious. . .course, I've always had a high pain tolerance. . long distance runner, marathoner, yada yada.  Midwesterners don't complain, you know.  My mother taught me that.

What did your PEs feel like?

Marnie



#16 Guest_billronm_*

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Posted 14 November 2013 - 08:37 PM

Hi Marnie & Pat,

   I'm with you Pat I don't want that many x-rays either. I did just get my schedule for December and there wasn't an x-ray scheduled so maybe I'm done with them.

   Hi Marnie,

  I was getting short of breath for about 3 months, just walking to the mailbox and back wore me out. I just figured I was out of shape? That bad ?  Then I got a lot of congestion, but Sprycel always did give me some congestion but not that bad, and the shortness of breath kept getting worse, but the final straw was when I would bend over I would feel this movement on the left side of my chest, it's hard to describe it was like a thump,I thought it might be my heart so I made an appt with my cardiologist but the next morning I was having a real hard time breathing (I'm sure my nerves made it worse) I live so far away from the erie hospitals, so we called the ambulance, boy they had good oxygen. I think the first doctor that examined me had a pretty good idea what it was but you know how they are, they never tell you anything at first, the first thing they did was a chest x-ray

and right after that the doc came in and said they were keeping me, I'd only been in the er about 30 minutes when she told me that. They took 2 liters of fluid out of my left lung, I think Pat had that much too. I think you should get an x-ray just to be safe better safe than sorry. JUST DO IT, you'll feel so much better knowing what it is, and maybe you just need a water pill.       Billie



#17 hannibellemo

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Posted 16 November 2013 - 10:13 AM

Marnie,

That sucks that you're having all these problems (rash, etc. with Sprycel). I think I may be losing my Queen of Denial crown to you, though. Colds do not go on for months! Repeat that after me. However, I can't think why a PE would cause you to cough up crud. I think it is more likely something else. I would ask for an x-ray to check for infiltrates and fluid, too, just in case.

I was carrying a loaded suitcase up the stairs and was seriously out of breath when I got to the bedroom. So much it scared the crap out of me. I denied it for a week until I had to accept something was off. I had symptoms when the tip of my right lung was just blunted, my onc looked at the x-ray and told me I shouldn't even be able to notice that a PE that small. I didn't stop Sprycel for about 2 weeks and by that time my PE had become more serious and I had developed a small peri-cardial effusion. I had pleurisy, too, which made it feel much worse.

Like you, I have an over-developed sense of denial and a high tolerance for pain. (My spleen enfarced twice before I allowed there might be a teeny problem I should have looked at.) Don't rely on breath sounds to assume you are ok, get an x-ray, please.

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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