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The Road to Success is Always Under Construction Part 2 of 2 - Summer of 2012

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GERD & Acid Reflux
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Posted 9/27/2012 12:53 AM (GMT 0)
Hello Friends..
Well I am here to say that as far as my NF goes... I am almost 18 months post and I have never felt better.. stomach wise...
Bill
I have to say I am send out healing prayers for you .. you have gone through so much and you keep running into something else.. I feel like a whiney baby with my issues compared to yours.. I am so hoping they will find a way to fix you for good..
Denise..
I know you are enjoying your little guy and looking forward to the new baby.. take all the time you can get with them.. My Abby will be 4 years old on the 8th of Oct and I have only seen her 7 0r 8 times since she was born... this truly breaks my heart.. but at least I have seen her grow on skype and in pictures... I will see her for her 4th birthday at Disney World in Orlando.. I cannot wait...
Joy
I hope your asthma is easing up on you, and that you are feeling a lot better.. heard anything on your SS?? Soon I hope..

KITT
I truly miss your presence here.. I am so glad that you are better and I pray that you will continue to heal under God's gracious hands....

NOW...
for my ongoing saga...
Last Saturday I felt some really rapid/fast heartbeats.. no not a-fib again, but it frightened me none the less... I had intermittent episodes Sat. and Sun.. my cardiologist wasn't in Monday.. went Tuesday.. I think it is the meds the EP has me on my cardiologist doesn't.. he thinks it is SUPRAVENTRICULAR TACHYCARDIA.... YEEEE HAW!!!! the cure for this is .. ablation.... wasn't acting up when I had the other one, that's why they couldn't detect it.... But I am going to try to be brave through all of this.. cannot help but feel discouraged.. I so want to be well.... OK no more whining!

I hope and pray everyone here is feeling better and your blessings continue to grow....

still trying to find the end of my rainbow...
Sandi smurf tongue turn turn tongue smurf
Posted 9/27/2012 1:29 AM (GMT 0)
Joy-

A couple years ago they ran some tests for that and ALS, but nothing showed up. This has been an off and on thing so who knows. My WBC is back to 9.4, bu I have to wait til Friday to hear about the other tests they ran because his nurse wasn't sure what they meant.

Sandi- Thank you. You are definitely fitting in around here with other issues popping up after you think you have everything under control.

Take care,
Bill devil
Posted 9/27/2012 1:56 AM (GMT 0)
I'm just sitting here watching the wheel go round and round....

It's a merry-go-round world some days. sigh...

I'm hoping I've gotten everything in now for my LTD. I'm just waiting for final approval right now. I had to go through a merry-go-round of phone calls to make sure the doctors had the paperwork up for me. Then call the insurance people to see if they received the paperwork. Back to the doctors to see what's the hold up. Calling the insurance people to tell them papers will be sent as soon as paid for the paperwork. Then calling back to see if paper work is sent yet. Tomorrow I call the insurance people for the decision. (Fingers are crossed as well as toes.)

Sandi, it sounds like you go from one extreme to the other.

Bill, I hope theycan figure out your problem soon.

Denise, I'm sure your loving those grandbabies.

Kitt, I hope everything is sunshine and roses for you today.
Posted 9/27/2012 2:00 PM (GMT 0)
Joy-
I hate the silly games they make us play just to get LTD. I had about the same problems with short term too.
I am still waiting on SSIs decision right now. I had to go see one of their psychologists a few weeks ago because of my PTSD from the Gulf War. I overwhelmed him when he asked about my medical problems. He had to use 5 pages in his notebook. LOL! He made the mistake of asking for my medical history....HEHE.

Take care,
Bill
Posted 9/27/2012 8:31 PM (GMT 0)
Hi Bill

Sounds like your WBC is in the less scary range. I think you can have undetected abscesses that can cause very high counts - perhaps it is related to your lungs after all. Here's hoping it's part and parcel of something you've already got a handle on!
MDS usually affects people more around retirement age and causes anaemia as well...... Though there are no absolute 'rules' for these things of course! Hope the mystery is solved very soon.

MMM
Posted 9/30/2012 2:07 AM (GMT 0)
MMM-

I am very happy the WBC went sown on it's own. I received the list of blood work results today in the mail and most is way out of my league to understand. So I'll have to wait for him to call and explain it. There was one that is a bit scarey though. It was a test that had the abreviation of Leuk. on it and was positive. Probably nothing, but we all know how our minds like to get going on things we don't understand.

My platelets are just above normal range still and that had stopped me from donating plasma a couple years ago at the red cross.

I also got my denial letter for disability I was waiting for, so now it's in the lawyer's hands now. They said I could still do light work part time that was low impact socially. HUH?! I am trained as an aviation and car mechanic with an HVAC background. Also grew up farming. This doesn't fit their suggestions for employment and what employer is going to let me off 2 to 4 days a week to either go to doctor;s appointments or just to recoup from the previous days work?

Take care,
Bill
Posted 9/30/2012 2:19 AM (GMT 0)
It's probably leukocytes, which is white blood cells.

I know what you mean. They could say I could work but who is willing to let me sit at a desk job with no fluorescent lighting that I can go home when fatigue and fog hits me suddenly?
Posted 9/30/2012 3:07 AM (GMT 0)
Bill and Joy,

I'm with you both.  It's unrealistic to expect you to do "light work".  How can you survive on that "light work" anyway?  Persevere.  Get that lawyer working for you.  I'm confident that it will work out in the end, but it's too bad that you're having to jump through so many hoops to get the help you deserve.  I'm with you in spirit!

Sandi,

Yes, I'm blessed to be close to my grandson. He's 22 months+ now, and is definitely a handful!   He's so in the NOW and thoroughly enjoys whatever activity he's involved in, and doesn't want to stop it, just because the adults in his life are ready to move on to the next activity on their list!  We took him to a fish hatchery today, and he was so engrossed in the fish (and feeding them) that he didn't want to leave.  He was so frustrated with all of us! 

I totally understand how excited you must be about spending time with your little Abby!  It won't be long now!  Enjoy every moment. 

I hope you get things straightened around soon.  I don't know if you saw my post to you about my husband's diagnosis with a-fib.  It's been driving him crazy.  I hope you get your heart rate back to normal very soon.  I know how disconcerting it is. 

Kitt,

You know I'm with you in spirit, and think about you all the time.  Hang in there, my friend.  Just put one foot in front of the other and take one day at a time.

(((Hugs to All)))

Denise

Posted 9/30/2012 11:50 AM (GMT 0)
Hi Bill

Raised platelets can be part of what's called myeloproliferative disorder - if they're concerned about that you'll get asked for further tests. If it's not very high they'll just watch for a while - raised platelets can also be reactive to physical or biological stress like surgery, so it could still all be a storm in a teacup. Have you been referred to a haematologist?

MMM
Posted 9/30/2012 1:29 PM (GMT 0)
Joy- I bet you are right about the Leuk. thing.

Denise- Thanks for the encouragement. I can remember those days when my kids were so engrossed in one activity they would get so upset when we had to move on. They really loved to watch and feed the ducks and peacocks at the lake behind our townhouse in Va. Beach.
Now my babe girl is probably going to get engaged this Christmas.

Kitt- Praying you are doing well with the chemo. I know your first was rough, maybe counting them down versus adding them up will make them go by faster.

MMM- My VA pcp said he will be referring my to one after he reads the blood tests. Another weird thing is when I was wrenching if I busted a knuckle or cut my hand it would bleed about 2 to 3 minutes and then clot over. Now I bleed like a stuck hog from a scratch and I don't take any type of blood thinner.

Take care,
Bill
Posted 9/30/2012 8:04 PM (GMT 0)
Kitt - thinking of you x

Bill - you may have to have a few more tests whilst they figure things out. They may take a bone marrow sample, which is not as scary as it sounds - I'd take that over a gastroscopy any day! Hope things get sorted soon x

MMM
Posted 10/1/2012 11:37 PM (GMT 0)
Bill
First of all... the attorneys hands are where your road to disability should be.. My husband tried 2x to get it and then went to an attorney.. had it within a year and all back pay from when he first applied. Secondly, the guy that was for disability and against my husband getting it, told the judge that he had several jobs my husband could do.. at minimum wage.. she asked him if he would take any of them.. he said "well, no" and she said "then why should he take them when his earning capacity was almost $100,000.00 a year before his accidents. That was all she said before she approved his disability and back pay. Actually.. he went directly on Social Security because the docs said he would never be able to work again. Don't get discouraged.. Please feel better soon and prayers that your drs find out how to fix you!!

Joy
The above was for your benefit also.. Feel better soon & Please don't get discouraged.. you will get yours too!!

DENISE

What have they said they are going to do about your husbands a-fib?? or what are they doing??.. Is his persistent or paroxysmal?? Please let me know how he is.. I wouldn't wish that on my worst enemy..what meds have they put him on?? You might say that over the last year I have become a bit of an expert on a-fib.
I have not had another rapid heart beat episode since last Wednesday. I had the monitor on for 24 hours and I get the results tomorrow. I do feel better than I have in a long time.. The ablation was, in my opinion (as of right now) a success!!
Let me know how everything goes..

KITT
I think of you often and send prayers out to you also.. I am hoping that you make it through these treatments unscathed.. I know it is rough but, believe it or not.. I know you are a strong person.. You are going to be fit as a fiddle soon.. Then we can go out and boogie together in different cities!!! yeah yeah

Feeling better and seeing the beginning of that Happiness Rainbow...
Sandi smurf tongue turn turn tongue smurf
Posted 10/2/2012 8:42 PM (GMT 0)
To my dear friends here in this thread,

There are many people important to me that  make my life special but there is no other group like this one.   We have been posting in  this thread ( with different titles from time to time) since 5/31/2009 !  Just imagine what we all have done in the last 3 years and some of us have done the same thing more than once - hey Bill try not to hog all the Nissen fundoplications. turn

We have been through a lot together, both good times and not so good times yet we always stick together.  This thread is open to all members so anyone wanting to join in please hop on board.  

We have lost loved ones and welcomed new members into our families.  When one of us is down the rest always rally around. 

We have beat diseases and disorders and learned we have new diagnosises over the years but we never give up.

When I read that Dickens said, “reflect upon your present blessings,” each of you came to mind.

Thank you for being my support and my friend,

Kitt

Posted 10/2/2012 9:40 PM (GMT 0)
Ditto, Kitt!

I love you all!

((((((((((((((((Giant Hug!))))))))))))))
Posted 10/2/2012 11:50 PM (GMT 0)
Kitt

You said a mouthful!!!! I am so blessed to have found this group and having made the friends here that I have. This only goes to prove that you do not need to be physically in someones life to make a difference..
You ALL have made such a difference in my life.. THANK YOU!!!

Good news from the cardiologist.. echocardiogram came out good.. so did the monitor. Fast heartbeats could have just been a fluke.. praying for that.. going to see my girls this Sunday!!!!!!

to coin Joys words

I LOVE YOU ALL!!!!
Sandi smurf tongue turn turn tongue smurf
Posted 10/3/2012 9:36 AM (GMT 0)
Kitt-

Wow, has it been that long already since "where in the World is Bill"? Sure doesn't seem that long ago.

I am praying everything goes smooth with your treatments and you have an even better out come as mom has. You and all here have helped me through some tough times in and out of the hospital. Know you are loved and cherished here as well as at home. Your strength and wisdom has no end my friend.

Sandi- I went without a lawyer the first time, but before I filed this time I made sure I had a lawyer from the start. They called yesterday and said they got the denial paper work and will be contacting me in the next 2 weeks to go over everything.
As a maintenance and auto mechanic I was making 50 to 70k and they say I can do basically light work that doesn't involve social contact. I just have to play their games.

Take care,
Bill devil
Posted 10/7/2012 12:36 AM (GMT 0)
Good Evening All,

Yesterday I went to La Crosse to have lunch with my cousins and I really enjoyed myself as well as the beautiful drive down along the Mississippi River.  By the time I left the restaurant I was very tired.  This "girl" is not used to a whole day of socializing.  I will admit it makes me feel angry from time to time as I feel like the cancer and fatigue are robbing me of time that I would like to being other things than take naps or spend one week devoted to the chemo.

I will not complain if I don't feel well next week as long as I know that the week off of chemo I am able to be back about doing the things I like such as spending time with all of you.

Joy, shoot me an email so I know I have your right email address as I was going to send you something you might like to see.

Sandi,  Whoooooooohooooooo for you.  I am so glad your cardiologist had only good news for you.  Be well and remember to drink water to keep yourself hydrated as that may also help with the little runs of tachycardia unless you are on a liquid restriction for some reason.

Bill,  We are in peak Fall season for the colors in our neck of the woods but I suspect your not quite there yet as you are further south.

Thanks for the prayers and I hope I do as well as your Mother.  She is a real trouper. 

To everyone,  I am thinking of you and if I am missing next week you will know why but I am planning on being here every chance I can get.  Take care and know you are all in my thoughts.

Love and hugs,

Kitt 

 

Posted 10/7/2012 1:20 AM (GMT 0)
Kitt,

It is always good to see you here on the forum keeping track of us all and helping new members.  You do it better than any of us can!  I'm also very glad that in between treatments you're finding the ability to feel well enough to do things you enjoy.  You know you've got your forum friends rooting for you throughout this challenging time.♥  Don't give th forum a second thought when you're not feeling well...we'll work hard to keep things moving smoothly!

Sandi,

Hooray!  Your visit to you little granddaughter is almost here!  Have a wondeful time!

My husband's a-fib is proxysmal at this point, but when it starts up it's really bothersome.  The cardiologist gave him the generic form of Cardizem to slow down his heart, as when he's in a-fib the heart really beats fast.  So far it has really helped.  He knows a trigger is anxiety, and he tends toward anxiety anyway, so that's a challenge.  He is happy that he has seen some improvement.  Thanks for asking!  I'm happy to hear that your heart seems to be behaving itself again!  Have fun on your visit! 

Bill,

Good luck with all your medical tests.  Hopefully they figure out what's going on and can get your straightened around soon. 

Joy,

I don't know what's going on in your state, but I, for one, am glad I'm not dealing with all the Race to the Top and APPR testing/teacher evaluation nonsense that's going on right now.  My sons are both teachers and they're stuck in the midst of it all.  I just hope the powers that be can be brought to their senses.  It's a bad situation all around.

Good luck with your insurance claim.  Hope you're feeling better these days!

MMM,

I hope you're feeling well these days.  Good luck with those iron levels...I'm sure it helps wth your energy level when they're up to speed! 

(((Hugs)))to everyone!

Denise

 

Posted 10/7/2012 11:57 AM (GMT 0)
Kitt-

You be sure to get all the rest you can we you need to, please. We will miss you when you are away, but know you will be back very soon. As Denise said, we will be sure all goes smoothly. Non has really done wonderfully and I know in my heart you will too. My neighbor, who is a parson, little grandson always asks God to bless me when he says his prayers. I was talking to him the other day and asked if he would add my friend Kitt to his prayers and he has. He is such an awesome 4 y/o boy.
We too are in full Fall colors. It's been in the upper 20s here the last couple nights and the leaves are a falling. Wanted to be in the tree this weekend, but we have our first tourney this weekend and it is our tourney, so I have to work there and will have to wait until next week to get out. Out of the 9 girls on the team we have 4 that hunt. How cool is that!?

Denise- I bet you are starting to see some Fall changes as well.


I see the Hemotologist next Friday at 8am and will see what they have to say.

We finally got on the diamonds for a tourney yesterday. Very balmy 29 degrees at 7am. Got up to 45 with 15mph winds and cloudy. Very long and cold day. We went 1 and 1 and will be playing at 9:30 this morning. My daughter is broken right now. Her first ever throwing arm injury. She has a problem with her bicep tendon and am hoping it will heal on it's own, but is PT doesn't work by the 25th I am going to ask for an MRI. She needs to be at 100% by March. Right now she just is a pinch runner and score book keeper. All the girls are so excited to finally have her on this team and are bummed she can't play. One of my other girls from my former team, who is our #1 pitch is also out this weekend with bronchitis. Hopefully they both are healthy for our college exposure tourney at St. Louis the end of the month.

Joy, Sandi, and MMM- Hope as is well with you all this weekend.

Take care,
Bill
Posted 10/7/2012 1:48 PM (GMT 0)
Will do, Kitt.
Denise, I don't miss the evaluations and the pressure they put on us for doing our super best for every child. I did that any way, but they would push us even more.
Bill, They told me they could take up to 30 days after everything is in to make a desicion.
My mom's in the hospital with a bowel obstruction from old scar tissue. Keep her in your prayers that she doesn't need surgery.
Posted 10/8/2012 8:28 PM (GMT 0)
A short update - I will be around all week !  Round 2 cancelled .......... cry

No chemo tommorow as my neutrophil ( white blood cells) count was very low and my potassium was also low so everything is on hold until we see what my white count is next week. One Round of treatment knocked me down and I was ready to complete round 2 but everything is now pushed back. 

My PCP is concerned, as she wants to find the reason why my body is wasting potassium,  so I will be stopping the Lozol, used to treat high blood pressure and the Prilosec and I will start  Zantac 150 mg instead.  I am to take Prilosec every other day alternating with Zantac for one week and then use only the Zantac.

If my lab numbers are ok next Monday then I will have Round 2 of chemo on Tuesday, 10/15. After Round 2 I will be started on NEUPOGEN shots to help decrease the incidence of infection from low white blood counts. 

Feeling a bit on shaky ground here but I will adjust, just so many appointments and things to remember.

Love to all,

Kitt

Posted 10/8/2012 9:22 PM (GMT 0)
Keep fighting, Kitt!
We are all behind you in your battle.
Get you a big monthly calendar for your frig and write down the appointments. It will help keep you on track.

I think I've come down with the shingles. :P
I've got itchy bumps on my back and backside just on the right side. Sigh...
I'll probably be seeing the doctor tomorrow....with no insurance. Pray for my wallet...LOL! (O:
Posted 10/9/2012 8:47 PM (GMT 0)
Oh Joy - dam shingles always bites you on the bum when you're already down! Try to get Acyclovir if it is shingles.

Kitt - good to see you around. Hope the potassium level is only the antihypertensive side effect. Coming off the PPI might be hard though - do you have to stop that at the same time or would they let you test out each drug individually? Just a bit worried about you going through acid rebound on top of everything else!

Neuopogen is good stuff! You might want to ask when is a good time to have flu and pneumonia vaccines too? And, if you have to go to the ER for anything, say immediately that you are neutropenic and need to wait in a cubicle away from all the coughs and sneezes of the waiting room!!

Be thinking of you,

MMM
Posted 10/18/2012 2:25 AM (GMT 0)
Hello friends..
I see no one has posted here for over a week.. :-(((

I am posting to say that I had a wonderful week with my 2 girls at Disney!! It was a magical time for me.. Saw my Dr while I was in Orlando and he cut one med in half and upped the other by 1/2.. go figure.. I will see him again in January and he said I should be able to come off both of those meds.. YIPPEE!!! He also said that the fast heart beat I experienced was perfectly normal for the 1st 3 months after ablation.. WHEW!!! that made me feel better.

Kitt, I hope that you are coming along.. I may not be here often but, I pray that you are recovering everyday!!

Bill, I hope things are getting better for you.. You deserve some down time from illness...

Joy.. I hope you are feeling better.. shingles are so painful....

Denise... I hope you have had a wonderful time being with your little guy and soon a new one to cherish...

Take care all
looking for my Rainbows still...
Sandi smurf tongue turn turn tongue smurf
Posted 10/18/2012 2:42 AM (GMT 0)
I'm getting better. I've got one more day of antiviral left. The blisters are drying up and some are gone already. I caught it early thank goodness.
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