Sandi Update

I got an e-mail tonight asking me how she is doing and wondering how we are all doing. I also was told I should go back to what I used to do and share more as so many are hoping and praying for us. It feels a bit like I am whining, but here goes since I can't sleep anyway.

She continues to hold her own though the recent cutback in steroids has definitely taken a toll. She is back taking a long nap most afternoons and heading to bed early. Today was a rare day in recent weeks as Sandi was able to stay up most of the day as you know if you follow her on Facebook.

For those interested her blog is here.


And her craft store, which she is keeping open for now,  is here.

Her next appointment is still a week from Friday when she sees the cancer doctor and then does another IVIG infusion. Hopefully when they do the bloodwork that day they will see some sign that that stuff is doing something.

Paperwork has started arriving indicating that Sandi's official termination date from her unpaid medical leave at Wal-Mart was March 28th. We do not yet know how much COBRA will be and proably won't know until sometime late next week. We do know that as of tonight she owes about $2300 to Texas Oncology for stuff insurance won't cover to date. Not to mention all the other medial bills that --despite having payment plans in place as we did what we were supposed to do each month--have now rolled over to collection agencies anyway.

So, that is where we are.....we just keep trying to hang on and not think about all the issues.

Sandi and Wal-Mart

Sandi is done at Wal-Mart. They notified her via certified mail just now that they will NOT be extending her unpaid medical leave. Not surprised. Her leave ended March 20th and that will probably be her termination date. No idea yet how much COBRA will be.

Infusion Friday

Tomorrow is another infusion Friday down at Texas Oncology at Medical City Dallas for Sandi. On the agenda tomorrow are pre-meds and then one thing of IVIG. This stuff is supposed to help stabilize her slumping immune system and costs 6900 bucks a thing.

The new year is kicking our tail with the medical bills. Fortunately, most are working with us---for now--but all are making noises about needing bigger payments and faster ones. We would if we could.

Sandi Back Home

Sandi is back home from the cancer doctor. Her blood work is okay so they plan on doing the second round of IVIG next Friday. That will be another multi hour infusion event deal that will occupy us most of the day. The doctor also did the paperwork to try and extend Sandi's unpaid medical leave for another six months. We have no idea if this will be approved, but we hope so. If it is not she is looking at COBRA to maintain her insurance and that is going to be insanely expensive.

Unfortunately, I was way too sick to go with her today. I have never ever missed one of her appointments before, but my stomach was a bit too shaky to be going out. I don't know if I had gotten the stomach virus that seems to be around here or if it is my colitis a bit worse than normal. Time will tell.

Back Home

Just got Sandi safely home before I have to head out to get Scott at UTD.  Fortunately, while the blood work was a bit of a mixed bag today, Sandi does not need to have a blood transfusion. Her cumidin was sky high at 4.6 so medications are being adjusted. The tapering of the steroids is now stopped. She will remain at this level of steroids for months most likely while her lung function is monitored.

So, all in all, everything  is pretty much the same. We do it all again next Friday.

Doctor Monday

Back to the doctor for a check and blood work for Sandi this morning. She remains about the same so we shall see what the blood work says about her status. As always, we bring books and her oxygen bottles thanks to Scott's help. The appointment is early so we shall not be doing this today.....

Saturday Evening Update

Things are pretty much the same here. Sandi is making continuous heavy use of the oxygen concentrator and we see her numbers drop rapidly when she is off of it to go to the bathroom. The little $35 oxygen sensor I bought at the store was proven to be very accurate in the doctor's office so we have been checking her  a lot to see where she is at. She has a little more energy today, thanks to the powerful steroids she is now on, so she has been sitting with her computer in her lap and doing e-mail.

Sad to say she discovered she has had zero sales again this month despite her "Christmas In July" sale announced on her blog before she went into the hospital. Since she is virtually giving away stuff she thought she would get a couple of sales and instead got nada. Even the daily drive by looks she gets at her store at iOffer have dropped considerably. Maybe it is because everybody is doing some sale somewhere, I don't know. But, it is pretty discouraging.

We still don't know what her status is regarding social security disability and the rest of it. Supposedly, having a stem cell transplant is an automatic qualifier as well as the cancer she had and her hideous prognosis. No word yet.


I mentioned last week how we just got the paperwork to renew our food stamps. We filled that out this morning and mailed it today and again asked for Medicaid assistance along with the food stamps. Hopefully, something is in the system we don't know about and her approval is in the pipeline. Considering the food stamp renewal letter was dated July 3, 2013 and we just got it last week, it seems to me like there could have been a decision one way or the other and we just don't know it yet.

In the meantime, things continue to be very grim from a money standpoint. So, if you can, please make a donation via the handy dandy widget over to the left. Any amount helps. The monies raised go to the rent, utilities, food, gas for the car, parking at the hospital, medical bill payments (despite an installment plan both TEXAS RADIOLOGY and MEDICAL CITY DALLAS HOSPITAL --among others-- have turned some of the mountain of debt over to collection agencies--as if that changes our situation at all), Sandi's biweekly insurance premium of $95, her drugs, etc. The monies are not wasted and are very much appreciated.

I hate asking and I wouldn't if things were not desperate.  Feel free to share the news of our situation through social media or other venues if you would care to do so as we truly do need the help.

Kevin

Sunday Evening Sandi Update

Nothing new to report......she is doing the same. No changes on anything--either better or worse. She has a blood work and doctor deal late tomorrow morning so we should know more as to how she is after that.

Still Sick

as is everyone in the place to varying levels. I might be a little better, but the antibiotic is doing a real number on my gastrointestinal tract. Don't worry, I will spare you the disgusting details.

In other disgusting news, we heard from the food stamp people in writing today and they ARE NOT fixing their errors. So, for now, we are not going to get any help at all from the great state of Texas. We suffer for their errors every single time.

So, we now have to reapply again and wait probably another month for them to process the new application and interview us again.


Kevin

Medical Update-- The Lastest on Sandi's Feet/Legs

Sandi had another therapy appointment today with the physical therapist and the news was not good at all. The therapist has now stopped all therapy at this point because he believes it is doing absolutely zero good for her. Nothing at all has changed for the better. She remains in nearly constant pain except for the occasional periods of numbness that seem to be happening from time to time. She is still experiencing swelling at odd intervals that, so far, none of us have been able to relate to anything.

Going forward the therapist believes that both feet need to be fully booted as soon as possible, not just her right, and that she needs an MRI to determine the extent of the injuries and damage in both feet and both. He is going to stress all of this in his report for the foot doctor.

Sandi is supposed to see the foot doctor Friday morning.  She is also supposed to have her PET SCAN and blood work on Monday to determine if she is still in remission.

How long they have to wait after her PET SCAN to do an MRI I have no idea, but I would think there has to be some time because they use some sort of dye deal with the PET SCAN. Seems to me they would need that to flush out of her system before they could do an MRI.

Obviously, things could easily be worse and we know that. But, not knowing exactly what is wrong and if it can be fixed is frustrating her quite a bit. You would think after all we have gone through over me the last two plus years, and everything with her as well from heart attacks and strokes to cancer, she could catch a break on this.

Medical Update--The Latest On Sandi's Feet

Sandi had another therapy appointment yesterday afternoon with the physical therapist and the news was not good at all. The therapist now believes Sandi has the exact same injury in her left foot and leg as she does in her right. Apparently the tendon on the left side is also now trying to pull away from the bone in her leg. While that left foot is not booted as of yet, the therapist believes that it needs to be. How she will walk at all around here with boots on both feet I have no idea.

The therapist was very blunt in his assessment yesterday and thinks it will be months before she can return to work. Of course he does not have the final say on any of this as that is up to the doctor. Her next appoint with the foot doctor is November 30^th when he will reevaluate her status.

Sandi was very upset and depressed about all this when she came back home yesterday. I kept trying to point out that a year ago she was coming off knee surgery and about to get a terminal cancer diagnosis so things could easily be worse. Been there and done that. So, as bad as this is, at least this year it is not cancer and she is home for Thanksgiving.

In the meantime, while watching TV and listening to me yell at football teams and curse politicians and news readers, she has been making things like crazy. That means she has been able to add some new product to her store on iOffer at: http://www.ioffer.com/selling/sanditipple
 

She does do special orders by request and has other things not shown on the site. So, if you don’t see what you are looking for ask here or contact her through her crafting projects blog at:

 http://lady-sandra.blogspot.com/

The pictures come from earlier this week when I finally convinced her she looked good and to let me take one so others could see.  Considering where she was a year ago and where she is now, I think she looks fantastic.  

Kevin

"Say, have you read my book yet?"

and variations of this where in five separate e-mails this morning. In each case i had to explain that I hadn't as I am way behind.

One of the reasons is because I have to spend a lot of time each week writing appeal letters on insurance stuff, food stamp stuff, and Social Security stuff. Case in point is today I am having to write several letters on different things. One of which is to Social Security.

Back a couple of months ago Social Security sends me an application to fill out to see if we qualify for assistance paying my Medicare Part B. Currently they deduct $100 from my small disability payment each month to pay for Medicare Part B. So, having that $100 bucks back would be huge to us.

We fill out all their paperwork. Spend another hour on the phone talking to a very nice guy from Social Security in an office in Arizona going over all sorts of things. Had to also get Karl to not only dig out a bunch of boxes so that I could find what they needed, but to also fax tax records from 2010 for us over to this same office to correct old information they had.

All together spent about five hours on this project up until today.

Today they deny us saying Sandi earned over 19k in wages at Wal-Mart this year. I wish!!!

Actual figure--from January 1, 2012 to this date-- is $7,549.89.

I have no idea how they came up with 19k. This happened despite the fact they verified again and again that she had been out on unpaid medial leave since May 5, 2011 all the way to July 5, 2012 due to her knee surgery and then cancer.

So, the real figure ---that they missed by over 11k and change ---is $7,549.89. Figure won't change much --if at all--as she is out on UNPAID medical leave now and not getting better.

Writing appeal letter to SS office in McKinney, Texas and providing proof via pay stubs of her actual income and medical status via doctor orders. Hopefully, somebody up there can fix this screw up and finally get us the help we need.


Kevin