Isolated and alone

Although I am always surrounded by my family and friends and have always been blessed to have that support, there are many days especially over the last year and a half that I have felt totally isolated and alone.

It sounds stupid, but there are not a lot of people like me.  There are actually a surprising (to me) number of people living without stomachs throughout the world.  These people and these support groups have been invaluable to me and brought me close to others similar to me.

Here is the big difference…..the majority of stomach less people that I have come across, either have / have had gastric cancer, carry the CDH1 gene mutation that almost guarantees them gastric cancer as well as other types of cancer and treatment for both go those is removal of the stomach.  There is another group that I have found that have had bariatric surgery that has failed and end up having to have their entire stomach removed.  Until I found these groups of people I felt completely alone….

If you google or do any internet search for total gastrectomy, the most results that you are going to receive are bariatric surgery to stomach cancer pages.  None of those apply to me.  Being unique is not a good category to fall into medically.  There is not research on what happened to me, there are very, very few people that have all of my conditions as well as not having a stomach.

What’s the big deal…first of all, I NEVER know if what I am feeling is just part of my new normal or if I am having a problem.  If I called the Dr. every time something felt wrong it would be a daily occurrence.  That is not reasonable or feasible.  So, I wait.  Will it get better, will it get worse, does someone else without a stomach feel this way also?  I find that a lot of us in the “stomach less” groups try to help each other constantly with trying to figure out “is this normal?”

I was hospitalized about three weeks ago for a bowel obstruction.  I felt something might be wrong for a couple of days but was unsure.  I had also just had more surgery the week before that at Mayo to repair a large hernia in my abdominal wall.  I waited too long.  I waited until I could not even sit up straight and my husband woke up at almost 3am and took me to the ER as I was still trying to wait it out.  I know longer no when to trust my instincts about my own body because every single thing is different.

I have huge scars and little scars and tons of scar tissue inside my body.  This alone causes pain, pulling, discomfort and makes me wonder if it is just healing.  I have developed other health problems relating to not having a stomach in addition to the host of problems that I already had.

I now have hyperinsulinemia hypoglycemia.  When I eat, since things move so quickly through my body my insulin spikes way up and then crashes down.  My lowest to date is down to 29.  This causes me to shake, feel nauseous, sweat, feel as though I am going to pass out and just generally sick.  So after consulting with my GI at Mayo clinic, I was again told this is part of my new normal.  The only way to combat this is to basically eat nonstop all day.  That would be great except for it seems with every passing day that food becomes more repulsive to me.  So I do the best that I can, I carry glucose tabs, glucose paste as well as an emergency glucagon kit in case I would go into a coma.

After these episodes it zaps every ounce of energy that I have.  I am getting better at finding the balance but seem to be having more difficulty recognizing  the lows until they are super low.

Research and knowledge make me feel more in control and it is difficult when I cannot research my own issues to the extent that I would like to.  It is getting better with my new found stomach less friends to support me.

Family & Friends

You win some, you lose some…..being sick is weird.  In my experience people either totally reach out to or seem to drop off the planet.

I understand both now, but it was very hard for me when I first became ill.  Some people just don’t know what to say or what to do and therefore do nothing and sadly just kind of disappear from your like.  This was very hard for me.  I lost some people that I thought would forever be in my life.

Some people do not believe you.  When I first diagnosed with all the asthma and chronic sinus disease, I heard people talk.  I heard through the grapevine….”is she really that sick”, “I think she is faking it”, “she is just trying to get attention”….just a few of the hurtful comments that I have heard throughout the years.

Getting over the loss of family and friends that do not seem to care or become more distant was very hard for me to deal with.  It has taken many years, some deep conversations with my pastor about forgiveness and I’ve made progress, but I still have a ways to go.  It bothers me that this gets to me as I don’t want to judge other people ever.  So I will continue working on it.

New friends, friends that are here till the end and the best family…I have more of those and they are the people that make my life easier to live.  They pray for, cheer for me and celebrate my small victories with me.  They hold me when I cry and know that there are no words needed.

If you are going through something similar, try to focus on the good and not let negativity from the other get you down.  I have received very few comments or questions on my actual blog posts.  I have received a lot of feedback from Facebook and private messages.  To al of you that tell me I give you inspiration and hope…you make my heart burst with happiness.  Even if only one person gains something from all of this then my goal is accomplished.  For those of you that have complimented my writing.  That also means the world to me.  I LOVE to write but have never shared it with anyone before.  I really wanted to do this and put EVERYTHING out there but it is also very scary to put yourself out there for the world.  So, I’d like to end this with a Thank You to all that are viewing or started following me.

Someone listen to me…please

Frustration….the result of too many health conditions and too many physicians and constantly struggling for coordination of care.  OR simply seeing a physician that hears or focuses on only one issue that you mention and ignores the rest.  I have worked in the medical field and fully understand that there are time restraints on the physician and only so much that can be covered in one appointment, but it can be done.

Here is where I find issue….take 5 minutes before you walk into my exam room and know what it is going on and why I am here.  Or take the time to ask your nurse or medical assistant what is going on, or read the papers that I took the time to fill out before my appointment.  My time is also valuable.  LISTEN to what I have to say….I know my body, I live with it and all of my problems 24/7.  There is a pretty good chance that when I am telling you something is wrong that I know what I am talking about.  I may not know what it is and that is where I need the physician to help me.

Don’t get me wrong, most of my physicians are top notch.  I do have a few that I constantly feel this struggle with.  This is so disheartening and makes me feel that nothing I have to say even makes a difference.

This is the hardest part of being a patient.  Being an advocate for yourself.  Getting other opinions and seeking out answers.  We tend to put our physicians on pedestals and sometimes forget that they are humans also and don’t have all the answers.  Especially for me, I am challenging to most physicians as I am way out of the norm….it’s not a good place to be.

I hand carry records and reports with me to every physician that I see.  In reality these should all forwarded between them but sadly that rarely happens.  I know this is a struggle for a lot of people and there has to be a better way for physicians to communicate.

emotions…have I lost my mind

Many times since I became ill in 2004, I have asked myself this question.  Am I crazy?  Is this really happening to me?  I have taken medications, talked to therapists, and other psychiatrists who all promise that I am not crazy, that I am not a hypochondriac and feel that I have good coping skills and am doing very well considering the situations / illnesses that I live with.   Whew…that’s good news, because I still feel crazy.

Especially since the big ICU stay last year, all the tubes, the blood transfusions, multiple surgeries, not being able to talk, etc.  It really brought out the crazy in me to a whole new level.  My first diagnosis as altered mental  I can cry at the drop of a hat, it can be happy, sad, heartbreaking or the best…no reason at all.  I have cried a river this past year.  Not just for me and my own personal pity party, it is usually because of the suffering that I see in others.

This journey that I have been on has built a need within me to reach out to others.  It doesn’t matter if it’s the same as my problem, cancer, a sick child, a sick parent.  Throughout all of this I have felt led to share my journey, especially the worst times.  I want people to know that there is hope.  I want people to know that you diagnosis does not define the person that you are.  I want people to know that the Dr. isn’t always right and it’s always good to get multiple opinions even if you love your Dr.  Medicine is a constant changing world and there is continuing education happening nonstop.  If you see 3 different specialists chances are they are all going to know about the same information but one of them, may possibly be the one that says “aha! I know what we should do”!

As I have cried this river of tears, it is also very important for me to mention that I have also laughed more in the last couple years as well.  I mean, sometimes you just can’t cry anymore and you have to laugh.  So to my local friends…if you see me crying or laughing inappropriately it’s just how I am now….lol.

I used to be very, very good at hiding my emotions but now I just kind of let them all hang out.  I have fallen apart at so many inopportune times and laughed at inappropriate moments.  Trust me I am medicated and I really feel that I should no longer be able to feel any emotions but that really isn’t working out for me, so I have to work harder at dealing with all the shit that I have kept pushed down.  I don’t want to be negative Nancy all the time.  Who likes a whiner????  Not me!  I don’t want people to feel sad for me all the time because despite all the shitty shit that I live with….I love my life.

Anxiety…the worst emotion for me as it is sneaky and strikes me when I least expect it.  Panic attacks…I never understood these but I sure as heck do now.  Hyperventilating, passing out…it is seriously pure hell.  Dale is best at calming me and helping me breathe and fortunately most times he is with me.  They have gotten less but still sneak up on me occasionally.

After so many dr’s have told me that I was going to die and would only have a year or so, I decided they were wrong and sought out other dr’s who came up with different plans and different ideas.  I am not ready to die yet…I have seen two of my three kids graduate high school and was told I would not be alive to see the first one.  I plan on watching the third one graduate in May 2018.

Being present for things that I had prepared myself not to be here for can make those moments even more emotional for me.  So this goal will be met and I continue to set new ones.  I have found that my best emotional treatment is having something to look forward to.  When your life is filled with staying home everyday, going to dr’s, and not always feeling good, it gets very hard to find motivation.  A small trip, going to the salon, going out to eat, going shopping, going on a big trip….whatever it is, small or big, find that thing to keep you fighting and moving forward.

And for those that believe in the power of prayer, I think that there is nothing better than being lifted up by thousand of people praying for you.  I always try to sit in the back at church.  I always get emotional at church and it is a grateful that I feel so deeply it just starts the tears rolling.  Embarrassing, yes, but it is who I am.