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!

travel, life

Life continues to march on…this is the longest that I have gone without posting, but I have still been writing.  I continue to go back and forth on how much to share and how much to keep private.  Here’s my deal…I don’t want to post things so that people for sorry for me.  I want to post things so that people can realize that you can live your to the fullest no matter what.

I believe that no matter how good or how bad your life is, it is going to change.  It is a constant roller coaster of ups and downs.  Sometimes the are sharp and fast and knock the wind out of you, sometimes they are slow and gentle and hardly noticeable.

So here is where I am at.  My parents graciously invited my sister and I on their annual jeeping trip to Colorado.  Sadly, my sis could not go, but my daughter was able to join us!  I was having some trouble with my COPD before I left and started IV steroids and tapered to oral steroids while we were in Colorado and just finished them a couple days ago.  I had a few small flare ups but nothing major.

Traveling is hard on my body overall, especially since losing my stomach.  My bowels get very unhappy and go from one extreme to another.  I am slowly learning to adjust for this and this was probably the easiest time I have had traveling since then but still some close calls.  My fatigue was also pretty bad a few days but I was in bed before 9pm every night, so that helped get me through the days.

I discovered that my level of fear has gone down considerably.  I have not been off roading on mountain trails for 30 years.  The last time I went was on a 4 wheeler and crashed down the side of the mountain.  I was a little freaked out when we left, but I rode with my dad who I completely trust and had no fear at all.  Then my mom and daughter joined us and I had to drive over the trails in a jeep.  Much to my surprise, again no fear at all.  Maybe it is because I almost died last summer and I would rather die flying off a mountain than laying in an ICU bed full of tubes and attached to machines.  I am not sure but it was definitely a unique experience for me and I felt that way every day that I was there.

I also got to meet up with some childhood friends!!!  They are a wonderful family who has endured many struggles, from a daughter overcoming brain cancer, a husband surviving a major motorcycle accident, a wife who is now fighting stage 4 breast cancer all while raising a son who is busy, busy, busy.  We were able to visit for several hours and catch up.  It was a wonderful time to be together but of course, not long enough.

I am trying to make every day count and make as many memories as I possibly can.  I believe that this life is meant to be lived to the fullest and I intend to do that, even if I have to sleep for 3 days to make up for a week of vacation.  Totally worth it.

COPD/Mayo test results

Once again having a COPD exacerbation.  I did a week of oral steroids and antibiotics with no improvement at all.  Yesterday day I started on IV steroids twice a day.  I will do these myself at home so yippee for no hospital!!!!  I will do these for at least a week and then reevaluate to see if I need to continue or start to taper.

I finally got the remainder of my tests results back from endocrinology at Mayo.  For the seven days that I wore the monitor my blood glucose was only in the normal range about 50% of the time.  They are recommending that I wear one permanently.  I am ok with this as it really opened my eyes to how fast my levels were dropping without me having symptoms.  Now the big hurdle is to get insurance to pay based on diagnosis on severe hypoglycemia with adaptation to symptoms.  So that has been submitted to the company that provides the continuous glucose monitor and they will get with me in 5-7 days.

The other problem that I am having is that when I am taking steroids I am actually having very high blood glucose levels.  This is a problem because I take steroids a LOT.  So, I will now be getting a prescription for insulin as well to add to my arsenal of medications.

The irony of all of this is that I am NOT diabetic.  Therefore we have to jump through hoops to explain why I need all these supplies and medications that are typically for a diabetic patient.  Hopefully, we will at least get the insulin issue worked out this week and the continuous monitor in the next two weeks.  Until then I will just have to start checking my blood sugar a lot more frequently that I had been instructed to in the past.

I do have another option for controlling the severe hypoglycemia.  It would be to go on IV nutrition or have a j tube for feeding put back in.  I am not willing to do this at this point. I am finally maintaining my weight and keeping most of my labs in the low normal range.  I know that at some point I will probably need IV or tube feeding, but I want to avoid that for as long as possible.





Lately, I have been feeling pretty overwhelmed with this life that I am living.  I have had some pretty rough days emotionally as well as physically.  I sometimes think that if I only had one medical issue to deal with then I would be ok and this would all be easier.  I know that is not true as I know people that have just one major illness and it is as life changing as all of mine.

I feel like I should have my life together better than I do.  I am home every day, yet I still struggle to get things done around my house and some days even get dressed.  Other days I am a rock star all day.  I have the constant support of my husband, kids and parents.  So why can’t I pull it together….

I think that a lot of it has to do with managing all of my conditions.  It is a full time, never ending job.

I have asthma/copd overlap.  This requires me to use three different inhalers, nebulizer medication, nasal spray and oral medications.  On occasion this also causes me to take high doses or steroids and/or antibiotics.

I also have fibromyalgia, chronic pain syndrome, post thoracotomy syndrome and these are issues that causes different types of pain.  I have nerve pain, I have pain from adhesions caused from all of the surgeries that I have had.  I have pain that I don’t know what the cause is.  I do know that I have some degree of pain all the time.  I currently take muscle relaxant and low dose pain medication.  I only take these at night because I fear that if I take them more often they won’t work as well as my pain worsens.  They also cause side effects that create more problems.  I feel like this is a problem that I will never have control over.

I have depression and anxiety.  This started years ago but has really escalated over the last two years.  After my extensive chest and abdominal surgery last year I developed panic attacks.

My digestive system is a disaster and completely unpredictable.  It seems that it is either in a state of overworking or not working at all.  This leads to bowel obstructions, constipation, diarrhea, vomiting…and it is a constant challenge to manage my life around  uncontrollable intestines.  I also have gut pain all the time.  The worst part about this is that I no longer know if the pain is an indicator that something is wrong or if it just hurts for no reason.  There is no way for me to know….

All of the digestive problems and extensive surgery makes getting enough nutrition a challenge.  I am constantly trying to eat and not overeat.  I have to watch the content of everything that I eat.  Anything that I eat that has a high sugar or high carb content is almost a guarantee of sickness, either immediately or hours later.  Again, this is not something I can plan for.  It may simply be my heart racing and nausea, or it could be vomiting and severe hypoglycemia, or hours spent laying in bed with a cramping gut.

Even when things do go well and I am eating as much as I can and not having sickness, there is the problem of absorption.  Without a stomach certain vitamins and nutrients are no longer absorbed.  As time passes these deficiencies become greater as the body uses up the stores that it had before losing the stomach.  This is another issue to constantly address.

Reflux…what started all of this mess to begin with.  You would think that without a stomach and gastric acid that the problem of reflux would be eliminated.  At least that is what I thought.  Wrong!  My anatomy now consists of a partial esophagus that is attached directly to my small bowel.  Imagine a drain tube, straight down.  This is why my food goes through too quickly as it has no where to stop.  This also means that when I lay down not only can food come right back up, but so can bile.  Yep, bile reflux.  It is absolutely horrible and burns so bad.  So I take medicine to try and help with that as well as sleeping with a wedge to prop me up.  I don’t want to sleep propped up, I want to lay down!!!!

I also have migraines, hypothyroidism, multiple vitamin deficiencies, anemia and the list goes on.  It seems like one problem causes another and then the medication causes another and another and so on…..

This is why I feel overwhelmed.  I feel like I can never get away from it and sometimes I just feel like I need a vacation from myself.  Somedays are good and I can pretend that I am pretty healthy.  I do know every day is a gift and that sitting around dwelling on what I cannot do is simply a waste of time.

This year has been terribly hard, but I have managed a trip to Hawaii, I turned my last visits to Mayo into a vacation with my boys and at the end of the month my parents are including me and my daughter on their vacation to Colorado.  Making memories is so important as well as having something to look forward to.  I know that I will continue to face more and more health challenges in my future, but I also know that I will continue to make as many memories as possible and try to remember that every moment is a gift.