angry, anxious and being an asshole

My new continuos glucose monitor.  

My shelves of medications and medical supplies and devices…….the pharmacy loves me….

Yep…I haven’t posted for a while as I have been struggling with many things.  First, of all I know that by putting things out in a public format for the world to see can cause a lot of good and inspiration, but I also know that it can cause a lot of criticism.  I thought I was prepared for the criticism as I have dealt with that for years….but I just found myself getting super angry.

I am very open about my journey and my struggles.  I also try to share the good in my life as well, because nothing is ever 100% bad.  I started hearing things, getting some messages and hearing things that other people said to others.  I’m not gonna lie, I got my feelings hurt.  It doesn’t matter who or what was said and it should not bother me but I am human.

So…not to give the critics too much power but to also clear some things up…here goes.  Now that I am super thin and try to take care of my appearance, a constant that I hear is how I great I look.  I try to look good….my scars are for the most part all hidden under my clothes, my illnesses are not visible on the surface.   Just because you cannot see my pain, my scars, my anxiety, my illnesses…believe me when I say that they are ALWAYS there.

I have been very blessed to travel some this year.  I was able to take Jacob to Hawaii in February to attend my cousins wedding and celebrate Jacob’s senior year.  This “senior trip” is a tradition we have done for each of our children.  This summer I had to return to Mayo Clinic for post op appt and other consults.  I made both of my boys go with me.  After my appts we were told that I had to be back the following week.  After discussion with my husband we decided to take that week and see Mt Rushmore and Yelowstone Park.  My parents took time to meet us and bring me additional medications that I needed and help share the cost of hotels.  At the end of August my dad invited me to go to Colorado to celebrate his 71st birthday and jeep in the mountains.  We spent some quality time together and were then joined by my mother and daughter and also a cousin.  I was also blessed to see some lifelong friends while there.  Earlier this month, my husband and my parents and myself took our “baby” to Florida for his “senior trip”.  All of this travel was amazing and the memories made are priceless.  The only damper is people that have the nerve to question how I can afford to travel, how I can travel if I am really this sick….it goes on and on.  To put it bluntly, how we can afford it is no one else’s business.  How I can travel is with an entire suitcase that is dedicated to all of my medications, medical devices and important records.  I also take high doses of steroids every time I travel so that I can breathe and have some energy.  There are also many things that I cannot do simply because my body has to rest or I am having a flare up of some type that prevents me from going out.  I have been fortunate to not need any hospitalization while traveling.  The scariest times were this last trip to Florida.  On the flight there I developed a lot of breathing problems on our first flight that worsened on out second flight.  Luckily these were brought under control in about 48 hours.  On the way home on our last flight I was doubled over in pain and then my blood sugar crashed to 35.  I have to say that the stewardess was awesome at getting us what we needed and doing it discreetly so that no one else even knew that I was struggling.  Go Delta!

I came home to a letter from my long term disability company that they were stopping my benefits as they felt that I could return to work.  I freaked out, went and saw my physician and got his opinion which he had already sent them a statement months ago stating that I was disabled from any and all occupations and there was no expected improvement in my condition.  Now I am having to file an appeal and try to get those benefits reinstated.  This has completely stressed me out as I cannot believe that anyone would think I would choose what I live with over working.  Fortunately, I still have my social security disability but this has made me feel constantly worried about my future.

I also had a CT scan earlier this month for ongoing abdominal pain bowel issues.  There is apparently parts of my colon that have herniated up into my chest.  It also shows another hernia in my abdominal wall.  I am also having trouble with obstipation…like constipation but worse.  I don’t know what this all means for me if anything.  My surgeon at Mayo had been notified and we are waiting to see what his recommendations are.  However, both my local physician and myself highly doubt that I could survive another major surgery at this time.  So….we will see what they think at Mayo.

I will lose my COBRA benefits at the end of this month.  The majority of those premiums were paid by my long term disability insurance.  I am fortunate that I still have insurance coverage through my husbands employment, but not being double covered will increase what we pay out of pocket a lot.

All of these things have been constantly on my mind lately making me angry, more anxious than normal and acting like an asshole to the people I love most.  I have been chewing on the inside of my cheek and lip til its raw and has sores now.  I have been praying and praying, trying to lay all of this at Gods feet.  I know in my heart that everything will work out the way it is supposed to.  My mind however, wants immediate answers and resolution.

I will get through this.  I also want to say a special “thank you” to the people that have messaged me that have missed my blog, checked in on me and constantly support me.  Yo u helped me to remember why I started this in the first place.

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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.