Do you want that flavored?

I was at the pharmacy yesterday getting antibiotics (have a possible infection around tube site).  After explaining that the liquid is needed to go into j-tube, the pharmacy tech asked me if I would like to pay $3 to get the medication flavored in either cherry, strawberry or bubblegum flavor.  I looked at her….was she serious?  I said very slowly “this will be going into my j-tube”.  She smiled and said equally slowly (she must now think I am “slow”), “We can flavor this medication with cherry, strawberry or bubblegum flavoring for only $3 – would you like one of those?”

I said “original flavor” and she said “okay, but it might taste bad”.   I was running a fever of 101.8 and didn’t have the energy or patience so I kept my mouth shut (yeah, like that happens very often).

Have you ever read some of the side effects to your medications?  This particular drug can possibly cause the following side effects:  “severe stomach pain or cramps, severe diarrhea, or bloody stools, secondary infections, severe and sometimes fatal liver problems, tooth discoloration (don’t have to worry about that one), hearing loss which may be reversible, vomiting, abnormal taste, nausea,  indigestion, stomach discomfort, headache, confusion; decreased urination; depression; dizziness; emotional or mood changes; fast or irregular heartbeat; hallucinations; loss of taste or sense of smell; muscle weakness; nightmares; red, swollen, blistered, or peeling skin; seizures; symptoms of liver problems (eg, yellowing of the skin or eyes; dark urine; pale stools; severe or persistent nausea, loss of appetite, or stomach pain; unusual tiredness); tremor; or trouble sleeping.  This is not a complete list of all side effects that may occur.

Hmmm….makes you wonder if the possible side effects are worth the potential gain.

I see regular doc on Wednesday to determine if there is infection and to use silver nitrate on stoma site to reduce inflammation (this is really gross to discuss so please let’s just move on to talking about food…

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I decided I am not going to make a turkey this year – kids were not interested in me trying out a new stuffing option and I wasn’t interested in spending a whole day cooking when I can’t eat any of it.  Here is the stuffing recipe they turned down.

Twinkies Turkey Stuffing  
Ingredients
1 (8 1/2 ounce) package yellow corn muffin mix, prepared and baked according to package instructions
6 Twinkies halves lengthwise
1 (14-18-pound) turkey
1 tart apple, peeled, cored and diced
1/4 cup honey

http://www.huffingtonpost.com/2011/11/07/recipe-turkey-stuffed-twinkies_n_1080045.html

I will put ribs into the crock pot and make them a nice pumpkin dessert.  (oh don’t fret, they will get turkey at the exlaws Thanksgiving lunch earlier in the day).

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Still adjusting to the mid-day feeding tube hookup.  1-1/2 hour around noon just irritates me because I feel more trapped at home…but it has definitely helped with the afternoon low blood sugar problems.

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Still fighting with Medicaid for medication approvals.  They are now refusing to fill my anti-nausea medication.  Will have to ask doc to write letter to them explaining medical need.  They finally gave approval for 8 of the sleep aids per month.  Gee, what 8 days out of 30 shall I choose to sleep?  I am trying a different medication that is a lower dose to see if it will work.  They won’t approve it but I can swing the out-of-pocket expense this month.  It is much less expensive than the other medication.  I am too tired of not being able to sleep – I will try anything at this point.

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Keeping busy crocheting…now is a great time to buy some Christmas gifts (hint, hint).  I am also offering gift certificates so you can let them pick out their own scarf (hint, hint).  www.enviablecreations.com

Made several scarves to be donated to the homeless.  A local church donated the yarn so I am donating my time.

Oh, because it is Thanksgiving, I just wanted to post a gratitude message:

I am thankful for the spider that came down on on web from ceiling almost landing on couch between me and my son. You proved that I can still scream very loudly like a little girl and move REALLY FAST while shuddering with horror.

What she said….

This journey of mine has been a lonely one for the most part.  So hard to share some of the grittier aspects of life.  Tonight, I cried.  Real tears, loud sobs.  Not because of loneliness.  Not because of sadness.

Tonight I cried because I met someone whose journey has followed a similar path.  Her poem (http://mycrazycolon.wordpress.com/2011/10/13/pink-bubble-gum-colored-lips/) hit me hard.  I could have written this poem.

She understands…really understands.  If we never meet, if I never read another blog of hers…she has touched my life.

There are lessons to be learned.  Don’t be afraid to share your experiences.  You never know who may need to hear what you have to say.  Take time to listen to others…you never know what you may hear.

Heading back to her blog to laugh now instead of crying.

Searchers that ended up at my blog…

Every once in a while, I like to look and see what search phrases have lead people to my blog.   Some make sense…some make me smile…and then there are those that have me shaking my head with confusion.

Recent head shakers:

i want ashton kutcher’s life

jaw drop

suck hairy man (ewww)

hernia pull ups (do they mean like underwear pull-ups?)

total gastrectomy sushi (just sounds wrong)

boobs tubes 

boobs fall tube

boobs tube 

big titts tubes 

you tube-girls boobs sucking (I am sensing a trend…almost feel sorry for the person who kept ending up on my blog when they were really looking for porn)

make a fortune (hahahahahahaha – joke is on you)

plenty of money (definitely wrong search) 

sea lice reaction and mayo clinic (are there sea lice at the Mayo Clinic?)

weight scale with hairy feet (who searches for this?)

donkey hernia 

rump ache 

b horror movies (it makes sense when you see the next two searches)

cancerous yarn in stomach (invasion of the crochet hooks?)

smellypus boil on hard plate (gross, gross, gross)

време за оформяне на стомаха след тотална гастректомия (not sure what it means but they probably couldn’t read my blog either)

Who rides the merry-go-round? Zombie or Vampire?

One week later and still no medications.   Prescription A and Prescription B are daily medications needed to treat narcolepsy.  Without the medications my body is unable to regulate when to sleep and when to stay awake.  This means that I am awake all night and I barely function in a sleepy fog all day.  I am getting by on some naps during the day but this doesn’t allow me time to run errand before I have to hook up to feeding tube/pumps.   I keep zoning out.  I don’t trust myself to drive much – too groggy.  Without the medications I am a zombie by day and a vampire at night.

I am beginning to understand why the State of Illinois is having such financial difficulty.  I can understand why the medical field does not like government involvement.  I personally understand why people go postal.  I’ve only spent a week of riding this merry-go-round.  Come ride a spinning horse with me….

Day 1

Prescription is written

Prescription delivered to pharmacy

Pharmacy contacts Medicaid for approval

Medicaid declines

Pharmacy notifies me when I arrive to pick up medication.  Tells me to call doctor for letter of medical necessity

Call doctors office, leave message

Day 2

Call pharmacy and ask to rerun prescription

Pharmacy calls to say Medical has still not approved

Call Medicaid – they won’t talk to me as I am only the patient and they will only talk to medical providers and pharmacies

Call doctors office – leave message

Visiting homecare nurse calls Pharmacy and Medicaid.  Doesn’t get much further than I did.  She receives fax number for letters from doctor.  She is also given a number to call to check on process but told that she when she calls she will need to ask to be further transferred to another office for information and only information that will be given is if the medication has been approved or not.  She asked for this office’s phone number and was told that it is not given out and that all calls must go through the first office and she can then request to be transferred to the appropriate office after the first office verifies that her call needs to be transferred.  She is told approval can take hours or days or weeks.

Day 3

Call pharmacy and ask to rerun prescription

Pharmacy calls to say Medical has still not approved

Call doctors office – leave message

Doctors office calls and says they sent letter to Medicaid

Call Pharmacy and beg them to call Medicaid to find out what is happening and if they received letter

Pharmacy calls back and says doctor’s letter referenced incorrect dosage

Call doctors office and leave message

Email doctor

Day 4  

Call pharmacy  – find out that Medicaid won’t approve because the letter for prescription A is written as 30mg in morning and 30mg in afternoon – but prescription is written as three 10mg pills in morning and three 10mg pills in afternoon.  Prescription HAD to be written this way because the 20mg and 30mg pills have been on back order for months and pharmacy doesn’t anticipate receiving them for months to come.

Call doctors office and try to explain dosage issues.

Pharmacy calls and says medicaid will allow 8 pills a month of prescription B and not the daily amount (30 pills).

Call doctors office and leave message

Day 5

Call pharmacy and ask to rerun prescription

Pharmacy calls to say Medical has still not approved

Call doctors office – leave message

Call doctors office again – told that they are waiting for doctor

Day 6 and Day 7 – weekend, no one to call, no medications

Day 8

Call pharmacy and ask to rerun prescription

Pharmacy calls to say Medical has still not approved

Call doctors office – nurse seems irritated and tells me she has been on phone with medicaid and they will approve a one and one half pill 20mg dose.  I again explain 20mg dose shortage and she says she will have to discuss with doctor.  I explain that pharmacy said dosage on prescription and letter must match perfectly and must be spelled out exactly.  Nurse tells me that Medicaid will approve 8 pills on other prescription – again I explain that this is needed daily – again tells me she will leave message for doctor.  She hangs up on me in mid-sentence.

Pharmacy calls and says that they are out of 10mg pills and not sure when they will get more in.  I ask if the prescription can be filled at another one of their chain pharmacies.  They tell me that the store would need to start a new pre-authorization process because they have different provider number.

Pharmacy also tells me that if Prescription B is written as generic acceptable that it might get approved for 30 days – but they would need a new prescription from doctor indicating generic.

Talked to doctors office (different nurse) explained generic option.  Waiting for doctor.

Pharmacy calls – they received additional 10mg pills for prescription A and will hold the pills for me for a few days pending medicaid approval (or pending a couple of hundred dollars if I want to just buy them out of pocket – wish that was an option).

Pharmacy also makes a comment along the line of being a monthly process….WTF!  Yep, monthly pre-authorization approvals.  I wish the brain fog would dull the frustration I am feeling.

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It would have been cheaper for Medicaid to simply fill the prescription the doctor wrote (the same prescription that I have been on for years).

How much of this time has been productively used?  How is this utilizing the time and energy of  individuals involved?  Where is the logic of this system?

The spinning horse are going no where….the merry-go-round is making me dizzy and I want to get off.

 

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almost midnight – emailed doctor

and now…Day 9

 

Reality is sometimes too real…

I wish I had some amazing awesome news to share with readers.  I would love to post a message saying that I had an appointment with a doc who might have a solution to the esophageal spasms.  I would be so thrilled to post these messages but, as the song goes, the thrill is gone.

I can post that I am a slightly better place than I was yesterday.  Yesterday, I felt like Eeyore from Winnie the Pooh.  I certainly had that dark little cloud hanging over my head.

I think I can usually handle most challenges with a moderate amount of grace.  I like to think that I am more optimistic than pessimistic.  I certainly can’t claim to be much of an optimist right now.  I am noticing a downward trend on the emotions.

How do I fail at optimism?  sit back and  let me count the ways (while mustering as much humor as I can to find something positive about each one).

1.  My car tires need to be replaced.  Another flat tire and the guy changing tire said same thing as last guy – they need to be replaced as soon as possible.  I figure I might be able to squeeze that into my budget in 2014.  On a positive note, I opted in on the auto insurance with roadside assistance and it has paid for itself already.

2.  Medicaid is not approving two medications that I take daily and I don’t have an extra $469 a month laying around to buy the medication.  Waiting for docs office to submit the paperwork for approval but also realize that even with letter, the medication still may be denied.  The medication is for my narcolepsy so meanwhile, I am unable to sleep and unable to keep alert during the day.  As much as I hate the vampire craze, I would make an excellent vampire because narcolepsy causes your body to be confused about when you should be sleeping and when you should be awake.  Plus side…being in a constant fog takes the edge off of dirty dishes and daytime tv.

3.  TV broke.  I am now watching while crocheting on a little crap tv.  Yeah, in the grand scheme of life, it might not sound so bad but when you consider how much time I am hooked to feeding tube/iv pole – it certainly helped pass the time.  Positive…squinting makes me look more interested in what is on tv.

4.  Everything is sagging and it is disgusting to have this excess skin hanging everywhere.  Not quite the mental pic anyone wants and it certainly isn’t helping my self-esteem.  Halloween is the only day of the year when bat wings might possibly be in vogue…that’s about it on positive and it only counts if you actually dress up as a bat on Halloween.

5.  Blood levels are still low (and so is energy).  The iron/blood infusions brought the numbers up but not up to normal levels and until they drop back to danger zone, no treatment.  This means chronic fatigue, lightheaded, blah blah….plus side, I don’t HAVE to be awake during the day.  Not eating also means no junk food which means my cholesterol levels are fine and I don’t have to worry about gaining weight over the holidays.

6.  Making too many scarves compared to the number sold.  Crocheting keeps me occupied but I need to sell the damn things.  Donated some to charity that I made with donated yarn.  Yeah, it feels good to do this and I will continue to do so but it doesn’t help out financially.  Positive (besides the obvious benefit of helping others), I can call myself a hooker (crochet hooker that is; get your mind out of the gutter).

7.  Computer ready to croak – starting to give blue screen of death more than once each day.  Sacrificed a chicken today so that might buy me a week or two.  Positive to this is that I am not sitting at the computer long enough to cause tube/stoma discomfort and the chicken didn’t suffer much.

8.  Beginning to resent having to shop for groceries and cook for the boys.  While I am glad that what I make the boys say tastes great – I get irritated that I can’t eat any of it.  Chew and spit isn’t even much of option because taste buds seem to have finally crapped out due to the ongoing bile vomit.  Food is even beginning to smell gross to me.  On the plus side, my dentist said my teeth were showing no wear, cavities and hardly needed cleaning.

9.  Nutrition doc has recommended that I hook up for 2 hours around noonish to handle the low blood sugar issues that happen in the afternoon.  Gee, 2 more hours trapped to the damned tube.  On the positive side of this – I can keep informed about “who’s the daddy” by watching the Maury show at 1pm.  (shoot me if I ever seriously find anything positive about the Maury show)

10.  I am becoming more isolated each day and with winter fast approaching, I will be going out less and less (I have no cold tolerance anymore).  On a positive, I can save money on deodorant.  Yeah, that one is weak but there’s not much positive about this one.

11.  I am losing hope and starting to fear that this is what I can expect to experience for the next 20 years or so.  Damn, no way I am going to be able to turn this into a positive – not in my current state of mind.  I know many say that I should that I should be content that I am alive.  Days like these I feel that “existing” is not a substitute for “living”.  Yeah, it is better to be alive rather than dead but this is not to be confused feeling fulfilled or living life.  It’s proving harder than ever expected to find my new path.

12.  If I hear one more person tell me about how someone they know had cancer and are just fine now, I swear I will not be able to restrain myself from causing them physical harm.  This is not helpful…all it does is make me feel like I can’t even get surviving cancer right.

And if this wasn’t bad enough – did you know that you can kill 2 hours by using tweezers to remove all the hair off your legs one hair at a time.  For the record, it is actually more pathetic than it sounds and not a recommended activity at 1:30am.   It also causes very irritated skin the next day.

I fear it is going to be a long dark winter.