7 hours in ER

Ugh…I will share more later…I am going to bed (aka recliner).

Fiddle-dee-dee…

Last year a friend replaced all the windows in her house with those expensive double-pane energy efficient kind, and earlier this week, she got a call from the contractor who installed them. He was complaining that the work had been completed a whole year ago and he still hadn’t been paid for them.  My friends tells the guy,  “Hellloooo…………just because I’m blonde doesn’t mean that I am automatically stupid.”  She went on to explain “Your fast talking sales guy had told me last year, that in ONE YEAR these windows would pay for themselves! Helllooooo? It’s been a year!”   There was only silence at the other end of the line so after a minute, she just hung up.  He still hasn’t called back.  She is convinced that he must have felt like an idiot…

(The above story made me smile yesterday at the end of a very long and tiring day.  I thought I would share the humor here before I share some not-so-funny phone conversations that I have been experiencing during the past couple of weeks.)

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For those of you who don’t know, I live in Illinois.  Yeah, the state where our governors serve in office before they serve in prison.  The state that is in a chronic state of financial crisis.  I have friends who work in state funded social service agencies and I am very well aware of lack of funds needed to adequately fund programs much less the personnel needed to administer these programs.  I’ve been on this earth long enough to understand that paperwork is the evil that must be worshiped by all and that rules/procedures must be followed.  Employees who try to bypass the rules to help individuals are often punished rather than praised.  I get that, I do.  What I don’t get is the lack of common sense that appears to be absent when the rules are applied.

I’ve blogged about the financial difficulties that have plagued me since I lost my job due to complications following the total gastrectomy.  In February, I had to start paying Cobra payments for my medical insurance.  For those of you who may be unfamiliar with Cobra, let’s just say up front that it is outrageously expensive.  I applied for Medicaid and was accepted but I held on to the Cobra because I wanted to have the freedom to seek out medical treatment options that might be outside of the state.  For the past 8 months, I have barely managed to make the monthly Cobra payments but each month I would fall further behind on other financial obligations.  At the beginning of September, I realized that I simply was not able to continue juggling bills and that I would need to end Cobra and rely on Medicaid for my medical expenses.  I began trying to reach my casemanager to find out what needed to be done to insure a smooth transition and to make sure that I don’t encounter any difficulties with my nutrition/iv fluids/infusions/nursing care/etc.   I am very persistent.  3 weeks later and still no response from him or his supervisor.  Finally, I got a hold of someone in Springfield who passed my message to my casemanager.    Long story short – I am given a new person/number to call which leads me on a wild goose chase of various individuals who pass me on to another department.

Last Friday (with a week to go), I was told that Medicaid would not authorize any treatments without a pre-approval process having been completed.  The process, I was told, takes approximately 45+ days.  I asked the individual what I am to do about nutrition and hydration in the mean time. One response was “go to ER if you become dehydrated”.  I explained that I cannot go 45 days without fluids/nutrition…I was further told “we have to follow the rules and all treatments must be pre-approved.”  Another individual informed me that medicaid might not cover these items if I am not in a nursing home???? WTF? It’s not like I can go to the local store and buy the iv bags etc…..I am so frustrated and a little stressed.

I called the home care agency that is coordinating my supplies and was told that they cannot provide my supplies unless Medicaid approves.  When I explained my needs and the inability to survive without the supplies, she told me to call my primary care doc and perhaps he could call Medicaid.  It took me three weeks, a lot of persistence, phone calls, and even emails to even get a call back from Medicaid….does she really think my doctor is going to sit on hold for more than an hour only to have some recording tell him to try his call later as the maximum time allowed to hold has been exceeded?  I could hear her shrug with indifference as she informed me that they could not provide services until Medicaid approves.

I talked to my primary care doc last Friday and he tried to reassure me.  He also was honest with me when he said that he doesn’t anticipate any new treatment options in the near future and is still unsure of how to move forward to identify who to contact to even explore additional treatment options.   I had my monthly appointment with him today and we basically ignored the elephant in the room.   On a positive, he applied silver nitrate to the area around the tube entrance and feels it should reduce the bleeding and oozing.  He felt that when the area heals, I might find some additional pain relief.  It’s not as painful a few weeks ago – but it is still uncomfortable enough to interfere with my movements.

Some days I get very discouraged.  I have lost so much already, I feel like I can’t afford to lose hope.  Mentally, I am holding myself together with thin threads of hope and I fear when hope unravels so will I.

So…Fiddle-dee-dee! I’ve decided to put on my Scarlet O’Hare rose-colored glasses (yes, they finally arrived which also explains why my blog is now pink) and simply dismiss reality because it is too overwhelming otherwise.  In my happy place, I can watch “Went with the Wind” to my hearts content.

In the meantime, I have been busy crocheting.  I have crocheted so many scarves/cowls/etc that I am sure I have made one just perfect for YOU and probably everyone you know!   Take a look and consider purchasing.  I am currently offering free shipment within the US and will even give discounts when you buy more than one item.  I can’t keep making them and not selling them – kinda defeats the purpose.

Enviable Creations 

If you have made it all the way through this blog post – thank you.  I really appreciate the encouragement and emotional support I have received from blog readers.  If you know of others struggling with a chronic health condition, reach out to them and simply let them know you care.  Believe me, it really does help.

Secret to Financial Freedom: Christmas Decorations

I have discovered the secret to financial freedom!  Yep, endless riches.

I am even going to risk sharing it with you because I think there is plenty of money – enough for all my blog readers to make a fortune.

(drum roll please)

The secret – Christmas Decorations

I was driving home after the iron infusion when I was distracted by the lure of garage sale signs.  I only go to garage sales that are the right side of the street I am traveling on but that’s another story for another time.  Back to the garage sales…

After about the 7th sale through a variety of neighborhoods , I noticed a common thread.  Every single one of these sales had a table (or more) covered with Christmas decorations.  While many of these items were second hand, some of them were still in original packaging.  Normally, I ignore these tables, but today I paid a little more attention.  I mentally rough-guessed the original purchase prices of the Christmas decorations for sale at one garage sale – we are talking several hundred dollars.  By the 7th garage sale, I figured that over a $1,000 of Christmas decorations were for sale for maybe $50 total.

It doesn’t take a genius to figure out that people spend an excessive amount of money on seasonal decorations that they quickly tire of (or never use).  I do realize that a portion of these purchases might be impulse purchases made in the days right after Christmas when the items are reduced down to 1/2 price…but still.

Think about how many strings of tree lights you have purchased, how many wreaths, bows, stuffed holiday animals, and assorted other knickknacks you yourself might have purchased.  I know people who theme their tree/homes every year and seldom reuse the prior year decorations.

Sucky economy – not a problem.  People always use the holidays as a time to pull together especially when the going gets rough.  They put extra effort into making the home jolly and bright.  I predict that this year will bring in record sales of red bows, green wreaths, glass ornaments and inflatable yard Santas.

I’ll bet you are nodding your head in agreement…

All that remains between us and endless wealth is some money to investment and a stock broker.

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On the medical front – had my first of five iron infusions today.  I will be receiving them twice a week for the next two weeks.  It might surprise some of my readers that when you are receiving iv iron you can actually taste it.  I know it doesn’t make sense as it goes directly into the veins but, trust me, the taste of a rusty nail is very real.  Bletch.  The infusion nurse offered me a hard candy to suck on.  Whoever came up with the idea of a cinnamon/caramel swirled hard candy should be tarred and feathered.

Fever still present and pain still present in abdomen.  I can only hope that the iron joint aches and wiped out aftermath won’t be present for the next two weeks.

By the way….do you like the new blog format?  It’s fall (which I love) and I felt it was time for a change.  I am still playing with the different color options .

I can’t believe he said that…

Ever hear something that truly made your jaw drop?  I did today.  But before I tell you about this comment, you have to understand about the events that led up to this comment.

A week ago Monday, I started to experience some abdominal discomfort around the j-tube.  I mentioned it to my homecare nurse but it didn’t seem that serious at the time.  By Friday evening I was in serious pain.  Unfortunately, it is not clear which doc will be responsible for issues like this so I sent an email to my primary doc as well as leaving a message with nutritionist.

On Saturday (as previously blogged about), I headed over to the day hospital for my blood transfusion.  I was there 5 hours for the 2 units of blood.   It was obvious to the nurses that I was in some serious pain and they tried to call the doc who told them that if the pain was “bad enough” I should go to ER.  My ER copay is $100 so I decided I would try to manage until Monday when I could see about a doc visit ($35 copay).   I know, it sucks to have to choose to endure pain because of money but that is reality.

On Monday, I received call from primary doc’s office telling me that I needed to contact the surgeon who put tube in.  I call the surgeon’s office and was given first available appointment – Thursday morning.

Tuesday morning (10:30am) and the homecare nurse is very concerned because about 6 inches of j-tube has been pulled into abdomen – 3 inches when she was changing the dressing.   The tube can’t be pulled out due to the INTENSE PAIN.  She calls the surgeon who tells her that the clinic is closed and I should go to the ER.  I head to ER as soon as nurse visit is over.  3 1/2 hours later, I finally make it from waiting room to exam room…and this was the fast track because I was considered an acute case and my name was moved to the top of the list.  3-1/2 hours for an acute case…sheesh

The ER doc walks in and tells me that she talked to the surgeon and he said she was to send me to his clinic.  (huh? what? – I thought it was closed…oh wait…maybe he is in the area and will be coming over to see me…)

I arrived at the clinic only to be told by a wet-behind-the-ears resident that she talked to the surgeon and he said to send me home and for me to return the next day for my scheduled appointment.  Never mind that I had tears running down my face due to the pain or that I was bent over in agony.  She asks if I have any pain pills to take…  Even his nurse seemed shocked but she had the gumption to deflate the balloon holding the tube in the intestines (it did relieve some of the persistent pressure I was experiencing.)

After a very painful night, I arrived at his clinic.   Despite my obvious discomfort he grabbed the tube and pulled it out to the original length — I thought I was going to pass out.   He cauterized some of the bleeding tissue around the tube point of entry.  Said the discomfort was most likely due to the tube being pulled in by the intestines (no shit Sherlock).  He also stated after poking and prodding my very tender abdomen, “I don’t understand how you can still have pain, I don’t see any reason for it….do you want a prescription for pain meds.”  I declined because I still have some at home.  He then stated “You will be fine…there’s no reason for you to have any pain.”  I asked if it continues what should I do?  He told me to go to ER if not during clinic hours or on Tuesdays because Tuesdays are his meeting days, or the first Mondays of every third month….otherwise to call and schedule an appointment.  (I think the only reason he didn’t end up in ER was because I was lying on exam table and couldn’t reach anything to throw at him, and it was too painful to leap up and attack him.)

He was exiting the room with a “see you in 3 months” when I stopped him and asked him about the fiasco at the ER.  He said the ER doc was to have told me to go home and come to clinic the next day.  I informed him that I was in extreme discomfort and that he was the one who suggested the ER to the home care nurse.  He seemed to be confused for a moment and then offered a very weak apology for the mix-up in instructions.  As he quickly exited the room, I heard him ask one of his trailing residents….”3 1/2 hours waiting in the ER…isn’t that rather excessive?”

Is this guy that clueless?  3-1/2 hours is nothing.  A guy sitting beside me had been there over 8 hours…the large blood soaked bandage on his arm was already dried and crusty.  Another individual with what appeared to be a broken ankle from the swelling and color had been there almost 6 hours.  They were both still sitting there when I left – along with about a dozen people who had also been waiting before I arrived).

I am not even going to rant about the woman I overheard who was called in just before I was finally called.  Her exam room was beside mine (thin curtain separating) and I could clearly hear her tell the nurse “I think I might be pregnant and want a pregnancy test and a flu shot because my doctor doesn’t have any appointments until Friday”.   Or the fact that a hospital worker who tripped and skinned her knee was taken in immediately…

$135 later (yes, I did have to pay the ER copay and the doc copay)….I am still in considerable pain and running a 101.2 degree fever.  I am sure he would say there is no reason for the fever either.  That loud popping sound you just heard my head exploding.

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In case you were wondering…following the blood transfusion my hemoglobin is now up to 9.4  (still pretty low) but better.  I do not feel better as the hematologist indicated I would.  In fact, I feel like crap.  I suppose I will need to call her tomorrow and remind her about starting the iron infusions since she has not called in the order yet.

Maybe doctors get those special parking spots because otherwise they would never be able to figure out where they parked their cars.

***Rant over***Stepping off of soapbox and heading for the bottle of vicodin and hopefully a little bit of relief.

 

Vampire by association

Up until now, I have managed to avoid the whole frenzy over vampires (Twilight).  I have never gazed longingly at Edward Cullen’s* pale bare chest (nevermind that he is so young it would be very creepy if I were to gaze longingly at anything of his other than his bank account).

Sadly, my vampire avoidance efforts have been for naught.  (I love that word “naught”, don’t you?)   Due to very very low hemoglobin levels my hematologist has scheduled me to receive two units of blood tomorrow morning.  I have to report to the hospital at 7am and will be there for 5-6 hours (ugh).  Next week I will start iron infusions again in an attempt to bring up my low iron counts.  Rebuilding my iron stores could take several months of infusions.  Iron infusions aren’t fun…they totally wipe me out for 24 hours and my arm/joints can ache for a couple of days.

On a positive note I will lose that trendy pale skin…  Hematologist also told me that I should feel better almost immediately (now THAT is something I could get excited about if I had the energy).

Oh, speaking of things that suck, the button tube connection that I blogged about the other day is no longer an option.  Seems this type of connector can only be used on patients who still have stomachs.  When I received the call with this news, I wasn’t that surprised .  What is that saying – if it seems too good to be true…  (what does this “par for the course” response say about my attitude?)  I actually felt sorry for the individual as she stumbled around telling me.

Meanwhile, I think my current connection might be slightly infected.  It’s not clear which doc will be overseeing the tube care.  If it is still an issue on Monday, I guess I will start inquiring.

OHHHH….almost forgot to share the really cool news!  Sold two scarves on-line!!!!  I shipped them out today to Texas.  Considering the extremely hot summer that Texas has endured, I found myself wondering if the buyer was being maybe a wee bit optimistic.

*for the record, I had to go to Wikipedia to find out the shirtless vampire’s name

What a day…

I was using my Magic Chopper when I tripped over the Wonder Mop.  As I fell, the clasp to my Life Alert broke sending it skidding across the kitchen floor and under the stove.

While I lay there (I couldn’t get up),  my screams kept triggering the Clapper turning the lights off and on.  Thank goodness I was wearing my Pajama Jeans & Natural Bra so I was comfortable yet fashionable.  

I was able to reach the Shake Weight and my Bedazzler which kept me occupied.  The mail man rescued me when he delivered my rejected application to the Hair Club for men.  

(just checking to see who is paying attention)

Not much new to report – saw the primary care doc who doesn’t have anything new to offer yet.  Nutritional doc changed the formula to a higher protein blend and doubled my Vit D supplement.  I am also adding liquid vitamins to the feeding tube.

I see the hematologist on Friday to discuss my low hemoglobin and low iron levels.

SSDD

I am keeping sane by crocheting…check out my online store (click on the shop button to the left and browse through some of the newer additions).

Enviable Creations

By the way…if you have any yarn just laying around from some project you started and never finished, I will gladly take the yarn off your hands.  I would be most appreciative of any yarn donations.