What is "normal" What is "trivial?"

Lately, I have stewed over the meanings of "trivial" and "normal". Sometimes when people ask me how I'm doing, the matter of fact is that I can't really answer that in fear of not being truthful to myself or others. I can say "I still struggling and still having a rough time", yet the truth is, this illness has been going on for a while. Not just with my recent years of stomach issues, but also with what NF brings with the disease (compromised immune system, trouble with sleep, easy infections, vision instability etc). Then again, I tend to also say I'm doing "ok" because this illness (including my GI issues) is just a part of me that I know I have to endure and it's part of my every day life. People also say to me "I bet you wish your health will return to normal". Honestly, I don't know how to respond. My entire life (yes, since I was born), I've faced doctors, hospitals, etc no less than 10-12x a YEAR. And as far as my GI issues....it's been going on for over 10 yrs now and just recently over the past 3 yrs has gotten worse to where I'm seeing a GI doctor and constantly going through tests after tests. It may sound weird, but every year... let's make that every month or even every day....I don't expect to have no pain or anything. VERY VERY RARELY I will have a super day of no pain and full of energy---- I consider that to be ABNORMAL for me... does that make sense? Don't get me wrong. I love those days when I feel super well and when I can run without aches and pain or do stuff around the house without pain and being tired... that I don't complain about. It's nice to have those days; but these days that I go through is "nothing new" as my mom would put it. Whenever I just say things like "my pain is really bad today", my mom.... and even my doctors would respond by reminding me that this pain isn't anything new and that they are trying their best to find a good combo of medications for my stomach pain/nausea. As far as my NF, nothing can be done, I just have to bear with it and take extra precautions not to get sick, etc. I accept this life of what we (my family, doctors, and I) call "normal". Everyday is the same.....I can't compare myself to lives of my friends and others. Sure I wish I can live a life where I can plan ahead to do things or I can do things on the spur of the moment and not feel bad after effects. My normal is different than what others call normal. Actually what you define as normal maybe different than what others would call "normal". As I have shared before and I still mean it, I would never trade my "normal" for anything in the world. I truly believe that God has used my sickness in so many ways to mold me into His image and above all, to glorify Him and enjoy Him forever. It is because of what I'm going through is how I found comfort in Him.

I share my medical issues with you all for one purpose only.... so that you can better understand my needs and health issues and that prayers can be lifted up. I try not to appear to be frustrated or complaining; but it is just my way to ask for prayers. I still feel guilty if I can't make it to church or canceling on friends but that's how it goes. Many times when I talk to friends and are completely honest with them (even if it is just posting a status on Facebook), I feel "guilty" about expressing my feelings. A lot of my friends honestly tell me how they wish they can change things for me or how they feel sorry for me that I have to go through so much medical things and have started this since I was born. I love my friends for expressing that kind of care and that love for me.
But I often wonder, how much more important is my health issues than others. I have many many friends battling things like cancer. Even though my NF has caused severe disfigurement and I have been called "ugly" by strangers (or even one time from someone I knew), I think cancer is the ugliest of all health issues. I ache for my friends having to deal with this and all I can do is pray and support them. I want to help them where I can and if I can. I know how it is to go through medical procedures and I can empathize with them and I think that is where my own health issues and/or disabilities come into being positive in my life.

Then there are times when people (even with cancer or fibromyalgia, or anything else) has expressed to me that their medical needs is far more trivial than my every month visits to the doctor and every month sicknesses. I've battled this forever and though you don't get used to doctors, nurses, surgeries, etc (and by that I mean, don't give it a second thought), I think to myself how can THEY say their health issues isn't comparable to mine since mine is basically and everyday thing. What does it mean for people to say "my health is far so much more trivial that yours!" I appreciate the sentiment, really, I do.... but do I offend people when I say to them "I haven't had the best of days" or "I am just not feeling well again today that I can eat much" What is the boundary of what you say and what you don't say? It's a constant struggle; but there are only VERY VERY few friends I can be totally honest with,, knowing that judgement won't be passed and love and prayers is poured over me.

My disease, my illness is all a part of me and that in fact, has given me a reason to LIVE FOR and LOVE my Savior. I have a heart for people with health issues and/or physical disabilities. Even though I can't hold a job yet due to my illness and constant pain, I enjoy being able to minister to others when I can. From the very beginning God had a purpose in his creating me... and though I don't understand it 100%; I still find strength to live each day for Him and Him alone.