day to day

I have learned that this “new normal” that I am living is really a day to day process.  I never have a clue as to how I will feel.  I may have a few good days, then a few bad days. I think the hardest part of recovering from the loss of my stomach is the ability to plan anything.

I am learning to be prepared for anything at anytime.  Combining this with all of my other illnesses and the uncertainties caused by them as well leads to some crazy times.  It’s not a bad life, it is a different life.  And with change there are always up and downs.

Sometimes I feel like superwoman and other times I feel like the biggest burden on every single person in my life.  I keep trying to make a schedule for myself and have realized that it is pretty impossible for me to follow any kind of schedule.

I eat as much as possible whenever possible.  The hardest part for me with eating at this point is trying to eat when I have absolutely no appetite.  The victory is the times when I eat and something actually tastes good and I can clean my plate!  My body cannot tolerate dairy, sugar or carbohydrates well at all.  I either get violently ill, severe diarrhea, racing heart rate, drastic blood sugar readings, sweating, faintness…the list goes on.  I avoid these things as much as possible especially sugar, but occasionally I just have to try again.  A glutton for punishment.

I finally received my continuous glucose monitor!  It is a small pain in the ass, but so nice to be alerted that my blood sugar is falling before it is down in the 20s or 30s!  Due to having such severe hypoglycemia so often, my body no longer recognized the symptoms until I was dangerously low.  This is going to be a great tool to avoid those times.

My fibromyalgia has been at its all time worse lately, but slowing getting a little better.  My breathing is always back and forth but holding steady for the moment.  I still have a lot of pain from my incision and was told that I have post thoracotomy syndrome and started on yet another medication to try and help with that…so far I have not noticed any improvement, but I will give it more time.

The plates and screws in my ribs continue to bother me on a daily basis.  I think that if I had some fat on my body to “cushion” that area it might not be so painful.  I am maintaining my weight and did actually gain about 7 pounds, but have now lost those 7 pounds.

My loose sagging skin (gag)….seems like this shouldn’t even be an issue for me with all the other stuff I have going on, but I HATE it and the fact that I cannot do anything about it.  Yes, I could have surgery but I am not a good candidate for surgery.  Unless it is emergent its just not going to happen.  So I am trying to accept this grossness and make fun of it and laugh instead of cry!

 

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hypoglycemia, phone calls….

Steroids are completed so my hypoglycemia is back with a vengeance.  I cannot express how much this truly sucks and steals every ounce of energy that my body has.  Also since this has been happening ever since I lost my stomach, my body has adjusted so that I do not realize that my blood sugar is low until it is dangerously low.  However, I do have good news!

When I was at Mayo earlier this summer they had me wear a continuous glucose monitor for 7 days.  It documented how often my blood glucose is below normal as well as notifies me when it starts to drop so I can correct it before its too bad.  We were hoping to get this approved by insurance but not very hopeful as they will normally only approve in a person with diabetes.  Due to my medical records and results from wearing a monitor for a week already, my insurance approved it!  It sucks to wear and keep track of another device and even with insurance its still costly but very hopeful that this will benefit my daily living.

Spent the rest of the day on the phone.  I am so sick and tired of arguing with medical billers and people that do not do their job correctly.  I understand that people are human and people make mistakes, I do every day.  BUT when I have called you more than 3 times and you still cannot correct YOUR mistake, it really pisses me off.

I had a hospital visit that was (thankfully) paid in full by my insurance.   I received the EOB from the insurance indicating that my responsibility was $0.  I received several statements from the hospital that I ignored as I knew that my insurance had covered.  Then I get a letter from a collection agency!!!  WTH?!?!?  So I call the hospital and we go over my statement and instead of taking their contractual adjustment they were trying to charge me for it in error.  After many phone calls between the hospital and insurance, the hospital agreed it was their posting error and my balance was $0 and it was only in a recollection state and I did not need to worry about it.  I didn’t.

Soooo, they did correct their posting and my balance to $0, but they never notified the collection agency.  So I get a call from the collection agency.  I explain what happened and can tell that the lady thinks I am giving her a line of crap.  I ask her to call the hospital and let her know who I spoke with.  Today, finally after a conference call with both the hospital and the collection agency, I believe that this is finally taken care of.  This is from almost a year ago….I cannot even tell you how many hours I have spent taking care of this ONE issue.

It is so frustrating to deal with this kind of crap on top of everything else.  Now that I am on disability, have college aged children and legitimate health care costs that I have to cover, I have to be super vigilant that these things are getting taken care of.  I am trying to see the blessing that I have the knowledge to know what to look for and can get these things resolved instead of being pissed that people cannot do their jobs.   Again, its not like this happened once, or I had to make a single phone call….it is months and months of calling, documentation and repeating the same things over and over.

On a happy note, I have no more phone calls to make today!