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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Rough times

I think that the hardest thing for me to answer is, “How are you feeling?”  I usually just say fine as it is the easiest way to answer.  There are good and bad parts of every single day heath wise, some have more good and some have more bad.  I have accepted that is the way that my life is and again, sometimes its ok and others not.

Things that make me grateful…Number one on this list is that my children are healthy.  I have always asked God to keep my children and my husband healthy and I will endure any struggle that I have to face.  I know and know of so many people that have children with chronic, life threatening illnesses as well as people that have children with cancer.  My sister had cancer when she was 10 months old and had to have her kidney and adrenal gland removed and radiation.  Fortunately she is now 48 and has never had any other major health problems.  I marvel at the strength that my parents had to have at that time and the fear that they had to have felt.  I pray daily for all of children that are ill, as well as their families because trust me, no one is sick alone.

I know that my illnesses have caused a lot of stress and fear for my children, husband and family over the years.  The crappiest part of it is that I can do nothing about it.  All I can do is try my best to be healthy and always be honest with them about my situation.

So…the last few days have been pretty rough.  I am having a lot more pain and trouble eating again.  I am hoping that it is just a fluke and will pass.  If not, I will mention when I am at the Dr next.  The weather is also changing here and my fibromyalgia is flaring up pretty bad.  Fortunately, my appointments for the moment seem to be getting further apart.  This is awesome as I hate going to appointments, but also a reality check that this is as good as it gets as well.

I can totally survive with the quality of life that I have now.  I still deal with a lot of guilt for not being able to work anymore but I am dealing with it.  I am also still dealing with a lot of anxiety as well.  It seems to come and go with no real rhyme or reason.

 

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.