Category Archives: My Complaining

Day +117 (2/16/17)

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What a confusing day after the mail run. Rec’d a letter from my drug insurance coverage on 2/6 stating that my 100mg infusion of Rituxin had been approved thru 12/31/17 on Medicare Part B with a $35 copay! WooHoo, I was so happy and had my 1st infusion on Feb 10th. Just got a letter from my medical insurance and they have denied my administration of the drug. The appeal has started! I was told this didn’t effect the approval for the drug so if the admin of the infusion is under $500 each time, I still have enough from my fundraising to cover it! What a headache!!
I will have to go to Kennett tomorrow to sign an Appointment of Representative Form to get the appeal started.  Thank goodness I don’t have to have another infusion until April 4th!
What a mess!  Sorry guys, just had to vent!

 

Day +6 (10/28/16)

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How low can we go?!?  Not much further according to the doctors.  He said the numbers should start going back up at our next blood work appointment on Sunday.  He did say that everything including me was normal.  Okay you can stop laughing now cause I know you all think I am anything but normal!!

My white blood cell count was 500, platelets 47000, pulse ox 92, temp 36C, hemoglobins 3.3 and blood pressure 107/75.  Now ponder that what you want, they are really just numbers to me but I want to keep up with them for my own records.  I spoke with him about not finding anyone yet to give the after care infusions of rituxin and he said they would help me with that!  How? I don’t know yet!

Now I am going to do some complaining and I am sure that will come as a shock to everyone!  I signed a contract with a lady to supply my caregiver, which I have been happy with, but the administration part has left a lot to be desired.  A copy of the signed contract should be signed and made available to all parties involved and this has not been the case.  Contract states that caregiver supplies blood pressure cuff, thermometer plus other stuff which he had no idea he was to do such.

I had a little bit of tummy ache and he felt my head and said I could have a fever!  With that being a major concern during HSCT, I told Chriss to get a thermometer.  The comment he got back was borrow one from another carer! Unacceptable in my eyes and for what I am paying for the service.  That contract was the main reason I went with this company and for what the administration is making they can supply their carers with the items they list as being supplied!! Had I known that I would have to buy one, I would have brought one from home, I’m sure I only have a dozen around the house so now I have a baker’s dozen! my temp was 36.something, normal again!

I guess I should be thankful that there is only a week left and I’m not upset at the start of the treatment!  Any way things are pretty slow here today and my tummy has calmed down, so it could have been the chilli Mac from the bucket that upset it!

Oh well, until tomorrow which will be a slow day again!

What a heck-of-a start!

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We have finally made it to the apartment!  It was a long way to get here.  Marty, Paula, and I left for Memphis Friday night. Got to the Holiday Inn that night and the room they called handicap was one grab bar for the shower not even a tall toilet!  It was also right next to the bar and dance floor.  While Marty was at the desk tring to gt a refund, Paula and I checked the room out and coming down the elevator, we stopped on wrong floor, and a nice black gentleman pused the right button and hopped off, door closes and I’m yelling shoe door and Paula can’t get the elevator stopped quick enough and I get to see the lights go by of each floor.  Good thing it was only one and it didn’t eat my shoe or foot because I only brought one pair!     We decided not to stay and as we got outside we saw all the drag queens in sequined dresses! We all decided it was time to move on for sure. Took us till almost midnight before we found us a handicap room.  We stayed at the LaQuinta and it was an actual handicap room.  We had a king size bed and Paula slept on a rollaway in front of the door and wondered what the peephole was for so close to the floor, short people?  We told her it was for wheelchairs!   We laughed so much we hurt.  We decided that from now on we could distinguish if it actually was a handicap room without going in if there were two peepholes in the door!  We got up the next morning and shuttled off to the airport where a wheelchair was to be waiting for me, not! Got it and off we went. We had a layover in Dallas for almost 4 hours and it flew by and we were jetting off on the plane to Puebla, Mexico.  As soon as I download pictures Marty took I will get them on here.

We landed in  Puebla around 9 pm and finally made it thru customs after they singled Paula out to go thru her luggage!  We then proceeded onto the Holiday  Inn LA Noria and we are hit with a big obstacle.  I booked my room on Expedia for, yes, once again, a handicap room! By the time we got there my room was given to someone else even tho it was paid for. Out of 19 floors and 150 something rooms they had one handicap room!  Needless to say we were really upset this time.  Marty was like a dog with a new bone!  She so tried to make it work and they let me stay the night in their room.  I am so glad they came with me and not Dad, he would have been worn out and possibly stroked out by this time!  Marty told everyone that she thought could understand her about our dilemma.  We found one handicap bathroom downstairs next to the lobby, so 19 floors up and down at 1am, 4am, and 6am with Marty pushing the chair didn’t allow for much sleep!  Thank goodness I had found some adult diapers that I could wear!

Made it thru till the van picked me up and am now in my apartment with my càregiver , Chris, with a handicap everything but my lift chair that I truly miss already.   We are waiting for someone to come from the clinic to give me my walking orders.  My time starts tomorrow with meetings with a meet and greet, with a neurologist, a cardiologist, x-rays and everything else to make sure I am healthy for the treatment.  I find out what group I will be in and things really start Tuesday, I think.

I was on the plane from DFW with 2 other ladies coming for the same treatment.  Wasn’t hard to pick us out of a crowd since we were all on canes, walkers, or in a wheelchair.  Met another lady Saturday night that was also at the Holiday Inn and another one this morning.  We are from all over; Boston, Oregon, Washington (I think) and I can’t remember the others.

I’m sure you are tired of reading this book, so I shall sign off for the day and try to keep this updated on a more daily basis.  I didn’t want to pull the old laptop out until I was settled in the apartment and I wasn’t expecting our weekend to be this eventful!

Good day and hope everyone back in the states is doing good.🐖🐷

If not for everyone this opportunity would never happen for me.

 

 

What a hoist of a day!

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It started with a unintentional slide out of bed onto the floor at 6am this morning!  I tried to not do it but you can’t use your hands to move a stationary leg and still hold onto the bed!  I sat there and looked at the grab bars in my bathroom and of course I over thunk things!

I scooted myself to the bathroom and I couldn’t pull myself up so I moved on to the next set and thought if I could pull myself up to sit on the pot(that was my goal when I woke up anyway)  That didn’t happen either so I decided I would slither on into my shower stall and use those bars.

Guess what?  That didn’t work either but I also thought if I couldn’t hold it anymore I was in a safe spot and wouldn’t be that much of a cleanup. Good thing nothing happened but I just gave up and pushed my iSafe Responder and had them call Mom & Dad.  They got over here, had two comments.  1) at least it’s not midnight! and 2) you’re going to lose some weight! (that had already went thru my brain)

We got my hoist seat under me and rolled me out of the bathroom and over my power chair. Kinda weird hanging in the air not seeing anything but the face of the person that has your life in their hands and then get twirled around.  That was still the best thing my insurance did for us!

2 weeks until HSCT and if I get just a little bit back that will help me help them get me out of the floor it’s all worth it.

Will I ever learn?

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Will I ever learn?

NO!!

When will I get it through my thick head that no matter where or what it is, when I make an appointment to I must always ask if it is ADA compliant.  Made one for today to have an MRI in Jonesboro and assuming since it was in the medical field that it would graciously accept my power chair easy peasy!  Boy was I wrong.  Got there and the machine was at least 7 or 8 steps up and then had to walk about 10 feet to get to the machine. I got my workout today and I didn’t fall.  They were kind and felt bad so they gave me $100 off.

I know that some places here in town are not handicap friendly but I figured Jonesboro had matured enough to meet the rules and regulations of the 21st century!  Boy was I wrong.

Oh me….

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It really just hit me, I need to really get my butt in gear! It’s one month before I have the HSCT payment of $54K, get airfare.  I have hired a caregiver to stay with me for the 28 days.  I really think Dad doesn’t want me to fly down there by myself so I think he’s going.  I told him I would really want him to fly down and then fly back with me.  Whatever he decided, it will be fine but I want to cover all his expenses because I’m the reason he’s doing this! I have raised about $17K – got a ways to go.

3 months before I go for HSCT !!  I’ve got to start getting stuff gathered for packing,  get an mri, that’s it-not at all, but don’t want to think about it anymore tonight. The main thing is worry about the auction and going thru the rest of my cabinets and closets!

That’s all tonight – Good Night!

What a week

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Man what a week it has been and it’s only Tuesday!  Yesterday started out with me making various calls to find a housekeeper, to set up an auction date, make doctor appointments and of course messages had to be left.  Well come to find out, I could call out but you couldn’t call in!  All this time I thought it was Mom & Dad’s phone messed up and it turned out to be both landlines at the same time – who would have thunk it! We both have phone service again, so I get to make all my calls over again on Thursday.

Went to the doctor this morning to have him look at my right ankle that has all the hardware in it.  My ankles swell anyway cause I get to sit in a chair all day and can’t wiggle my toes on my right foot.  My left goes down in the night with elevation but my right one is ballooned about 3 times normal size.  I get to go tomorrow to have an x-ray to make sure the bolts and plate haven’t moved then an ultrasound to make sure I don’t have a blood clot.  Man it doesn’t pay to fall off a tennis shoe but then people look at you funny when I would tell them how it happened.  Needless to say, I threw those shoes away that day!  I also get my teeth cleaned tomorrow, so I am going to be checked from head to toe.

This afternoon Dad and I went from one end of town to the other asking for permission to place fliers for the Gospel Singing.  We have signs just about everywhere.  I hope we can fill all the pews and have a lot of singers and musicians to come and share their talents with us. Don’t forget the date – Friday, April 22nd @ 6pm at Shady Grove Missionary Baptist Church.

I hope the rest of the week is smooth sailing for all of us.  Have a wonderful rest of the week!

It’s done & over

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Finally got the order sent to the right place, filled out correctly, and pre-authorized.  I can now get my monthly infusion of Tysabri!  Only problem is a chair isn’t available until Wednesday!

Oh well, I don’t have to get up, start calling, and be teed off by 9am for a few days!  Looking forward to that!

Everyone have a nice weekend!

Another yucky week

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Well it’s the 13th and I guess we have possibly worked it out.  Of course it was my fault for asking for the incorrect thing!  That wasn’t the only thing that teed me off but won’t go there!Told them if they had called be back to start with, this might not have taken so long!  I was told I didn’t have to call anymore!  Guess what I am fixing to do?  You got it, I’m looking for a new neurologist! This is the same person I got into it with about returning calls in October!  I don’t see the neuro now because I am an established patient, he will only see new patients.  I get to see his student doctor!

What A WEEK!

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What a week this has been. An HSCT date cannot come fast enough.  I am about ready to start my washout of my Tysabri now just because I’m tired of jumping thru hoops and still not getting anything done. . I am so ready to cut that cord with my monthly drippy date, the IV pole!  Monday comes tomorrow and it starts again!

Monday-steroid shot for bronchitis and was supposed to have my Tysabri infusion on Tuesday. Started calling nurse and doctor’s office to see if I would have it done!  Nurse said come ahead.  Never hear from the doctor’s office.

Tuesday-we drive to Paragould for the infusion and my blood count is so high that I can’t get it but on top of that.  The order had expired for them to give me the drug that was not ordered by them until this day.  I call doctor’s office twice and receive no call back!

Wednesday-called doctor’s office again and do not receive a call back.  Signed up to the NEA Baptist My Chart thinking I could send a message this way that possibly it was like everything else and had gone to the computer.  If it was an emergency log off and go to the ER! Really?  If you need contacted sooner, sign off and call them by phone!  Really again?

Thursday-called doctor’s office again and still no reply.  Called the infusion center to see if they can try calling the doctor’s office to get this done.  They are going to try.

Friday- no calls from anyone so I get to start fresh Monday!

Has my neuro decided to have nothing to do with me after we talked about HSCT and he stated that he didn’t know much about it but if that’s what I wanted to do he would work with me. Hmmm?  Well the feeling is very mutual right now.  My GP said he would support me any way he is needed.