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.

 

 

 

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overwhelmed

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.

 

 

Routine

The further out from losing my stomach that I get, the more I realize that routine is critically important to how I am feeling.  I did really well when I went to Mayo/vacation this last time but still not perfect.   I am paying the price now, but not as severe as I have in the past.

I know that when I got home that I was on the verge of another bowel obstruction, which I was thankfully able to avoid.  I am still fighting some lung issues and not responding to steroids as quickly as I had hoped.  BUT I am still getting by at home and am only really struggling at night.

I think if I only had one or maybe even two medical issues, it would be a lot easier for me to manage.  Lately it has really felt like a juggling act as I have so many different symptoms from so many different issues that I sometimes feel like I will always be grappling with one issue or another.

However, this is my life and I will continue to make the best of each and every day that I am blessed to be on this earth.  My youngest son starts his senior year of high school this week.  I can remember when all my kids were little and these days seemed so far away.  Now it feels like I just blinked and they are all adults.

It is a bittersweet time for sure.  I am super proud of all of them and excited to see where their lives take them, but also miss them greatly as they get more and more independent.  I also love that Dale and I get more time together and are able to spend more time together.  All I can say is enjoy every single moment of your life, good or bad, as no one knows when their last day will be.