Happy life

First, I have an update on my pneumonia.  It is still just as bad as last week but not worse.  I do have a port a cath in my right chest wall that I learned to access years ago.  So the good news is that my O2 saturation is still acceptable and I will be able to do IV steroids as well as two IV antibiotics from the comfort of my home and will go back next week to have a repeat chest X-ray.  I also have an O2 saturation monitor at home so I can monitor if it would get too low and I would need to go to hospital for O2.

So, looking back on my posts so far I can see that it might look like I have a really crappy and depressing life.  I want to reassure everyone that I have a fabulous life, a happy life.  Yes, there are crappy and depressing things in my life but they are NOT my whole life.

I have a husband that has gone above and beyond the vows that we took almost 23 years ago.  I have three children that are turning into amazing, respectful adults.  I look forward to seeing where life takes them, maybe being a grandma SOMEDAY, vacationing and just being here for whatever purpose God intended.

I have friends that always happen to know when I need them the most and they never fail me.  I have a church family that loves me despite my horrible attendance over the last year.  I have people that pray for me all over the world.  I know that not everyone shares my faith but it is a true and solid source of strength for me.

Years ago I was told that I would probably never even get to see my kids graduate.  My “baby” will start his senior year in August.  I try to find positive in every day and the one thing that I feel every day is love.  You can’t by that, rent that or ask for it.  It is given to me fully and freely with no strings attached and that is the best gift ever.

This is not the life that I dreamed of or expected but it truly is a great life.  I am not looking for sympathy or people to feel bad for me.  I want people to know that even in the midst of trauma, illness, financial trials that life can be great and there is happiness.  You just have to make that choice to be happy.  It is life changing.

There are days that I cry and feel sorry for myself and that is needed also, you just can’t unpack your bags and live there.  I believe there is always a reason to fight and always a reason to try harder.  Giving up is not an option for me.

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Pneumonia…

I have been absent for a few days as I have and am fighting pneumonia.  These are the kinds of things that really get me down.  When I feel like I am making some positive progress it seems like a setback is always waiting for me right around the corner.

It is no surprise that I have pneumonia.  The saddest and hardest part for me is, it is really hard for me to know anymore if there is something really wrong or if it is a part of my “new normal”.

I have asthma and COPD so I always have some degree of wheezing and shortness of breath.  Then there is pain…I always have pain and it is of varying degrees.  I am still healing from my almost 2 foot long incision from last summer, healing from all the chest tubes, drains that I have had, healing from my ventral hernia repair surgery with a six inch incision from the end of May.  My fibromyalgia causes me pain and is worse in times of stress.

I used to be able to say without a doubt something is wrong with _______!  Now, I second guess myself, I let things go to the point of being doubled over in pain because I’m not sure if it’s something that is really wrong or did I just move the wrong way?

With my pneumonia my biggest complain was pain on my left side.  I ALWAYS have pain on my left side though, so I wait until I have a scheduled appointment to have it looked at because maybe it will go away and maybe it is nothing.  I wonder if maybe I am just a “wuss” and need to suck it up.  So, I guess lucky for me I had a dr appt this week or I would probably be a lot worse off.

I will go back to the Dr. tomorrow and have a chest X-ray and follow-up appt.  Praying that this is improving with my home therapies as I will be so mad if I have to miss the 4th of July holiday stuck in a hospital again….

Last year at this time I was still in the Mayo Clinic hospital and finally having trials off the ventilator of breathing on my own.  This is around the time that some of memories started to become real and also very painful.  As always, I am still trying to put those pieces back together.

GUILT….

Guilt…guilt for being sick, guilt for not being the wife and mother that I want to be, guilty for no longer being able to work, guilt for receiving disability, guilt for making my loved ones hurt, guilt for needing help to complete simple tasks, guilt for no longer being able to make plans and keep them, guilt for living when others have not, guilt for the pain I have made my kids feel, guilt for it seems like everything.

This is all self imposed and a battle for me to overcome.  Am I the best mom and wife that I can be?  The answer is yes, but I want to be more and do more for my husband and my kids.

Can I work?  No, my health is too unpredictable and I cannot even be reliable to an employer part time.  I was fired from a job working from home.  Going to Dr appointments and having surgery is a part time job all the time and sometimes a full time job.

Receiving disability? I worked for many years and paid into social security and if I am honest with myself, I was actually eligible for disability years ago due to the severity of my asthma alone, but I still was able to continue working and did not want that.  I am now totally disabled.  So why do I feel guilty?  Mostly because people question me.  Are you going back to work?  You look great?  Why do you have a handicapped parking tag?  I was raised that you always look your best.  If you see me out and about, I am going to have on decent clothes, my hair done and makeup on.  That is a part of who I am.  I am also going to tell you “I’m doing fine”.  No, I am not lying, I am OK.  I am not going to unload my problems and ailments on every person that I run into.

Needing help?  Ugh, I really, really hate needing help with anything.  It is different to ask for help with something when you are able to complete something on your own and having to have help to complete a task.  It is so frustrating and honestly just pisses me off completely.  I farmed with my Dad for years and have always been strong and could do anything.  I hate being weak, hate needing help and feel guilty asking for help.

Making plans?  I get invited to lunch, or a party…I cannot give a definite yes.  It is always a maybe, it will depend on how I feel.  That is no way to treat people and because of that we only get invited places anymore by close friends and family.  After so many cancellations people think you are snotty, not interested or not worth the time and effort.

Living?  I see so many others that have been critically ill and did not survive.  Why did I make it through my ordeal and why did they not?  I believe that is all in God’s hand but I still cannot help but wonder and feel guilt.

So this is one of the huge issues that I am working to accept in this new life.

Good days and bad days

This life of no stomach is filled with series of good days and bad days.  I am to a point where I can have a couple really good consecutive days and then seem to have to “pay” for them with a couple of bad days.  The good days usually outnumber the bad days now.

So what is a good day for me…Getting up in the morning and staying up.  Being able to pick up the house, attend events for my kids, go to the store, cook dinner, do some crafting and overall feel good most of the day.  These seem like simple things but when your ability to do them has been lost it is a victory to have this kind of day.  Days that I can eat and keep everything down and not feel pain from eating.

I will never have the life that I had previously and I have come to terms with that, for the most part.  It is a grieving process that I thought sounded ridiculous when reading about it before I lost my stomach.  I have found that it is real.  Their is hurt, anger, denial and helplessness.  And as I spoke of in my previous post a feeling of isolation.

Bad days…these days are becoming less and seem to come in waves.  They consist of nonstop nausea, the inability to even eat a bite of a cracker, retching painful dry heaves and being mostly confined to my bed or recliner.  Without a stomach, I also have no reserves.  So when I don’t or can’t eat, weakness sets in very quickly.

Some of my days are now a combination of both, I may have a bad morning but be OK in the afternoon or vice versa.  It is still a life of unpredictability.  But regardless, it is a life that I am so grateful to be living.  And I am blessed to have a close family and friends that make each day better regardless of what is happening.