I'm sure the majority of people with chronic illness, whether invisible or not, have faced the confusion of how to best answer the "how are you" question on a regular basis. Whether you are at home, work, hospital, store, etc this question is all too familiar. I know that most people ask out of habit, as it's natural to say these three words when greeting someone. Most people are accustomed to replying with an "okay", "fine", "good", or some other simple response. I am guilty of answering in that fashion often, especially around strangers that I don't know. However, like many, I am not always speaking the absolute truth, just trying to be polite.

​It's easy when the person that you are speaking to is not familiar with you or your health and it's not imperative for them to know the truth, then quickly saying "fine" and moving on is alright. But what if it's a family member, friend, medical professional, colleague, or someone else that knows you personally? How do you answer the question then, especially on days when you really don't feel fine or when being falsely positive can be a hindrance in your care or best interests? 

Below are a few recent scenarios that have made answering the ordinary "how are you" complicated for me to answer. ​​

• Intense pain - I have become somewhat accustomed to feeling below par, varying degrees of constant nausea, and nagging levels of low-moderate level pain. However, the past few weeks I've been needing my heating pad continuously for higher than normal abdominal pain. There have been numerous nights, recently, when my body required me to sit or recline in my recliner with my heating pad on hi and a vomit bag nearby. The night before last, we were actually questioning if calling for an ambulance or an emergency room visit was necessary. (I've lived through a lot of severe pain experiences, but we've only broken down and called for EMS once.) My hesitation to reach out for emergent care is partly due to my lack of trust for the local ER. I don't know the cause of the pain that I was struggling with. It literally came out of no where and was extremely severe, easily a level 9 at onset. I was sitting on the couch watching Family Feud with my family, when all of the sudden my upper left abdomen had what felt like a Charley Horse spasm. But unlike normal muscle spasms it remained in spasm mode for a couple of hours straight. I was unable to move in any direction, couldn't sit up straight or stand up, and was in tears while trying to take short shallow breaths because breathing and position changes intensified the pain much more. All I could do was focus on my breaths, hold a heating pad as tightly as possible to my abdomen, and try to deal with the pain until it started decreasing. As time continued, my pain did not let up. It continued to be constantly sharp and began radiating to my side and back. None of our attempts for pain control were working. I remained at a level 8-9 for what seemed like hours at end. The pain can best be described as being comparable to labor (without breaks between contractions) or the ileus I had in the hospital after having my colectomy. Even sitting still was very difficult, and trying to talk only intensified my pain even more. My kids were very concerned and worried about me, scared because they didn't know what to do, not wanting me to end up going to the hospital, wanting me to feel better. When they frequently asked "How are you?" I hesitated before answering: "I'll be okay" and "I'll be fine". I think it worked to begin with, as they've witnessed many painful days before. However, after awhile they weren't so sure if they believed me anymore (Heck, I began doubting my own words as I said them) as this piercing pain was much different and more severe from the norm. Our oldest daughter tried to talk me into letting her take me to the ER, however, I had no idea how I could make it up out of my chair (yes the pain was still that severe), and knew the ride and wait would be unbearable in their hard uncomfortable chair. I convinced her that there wouldn't be much that they could do anyway, but if the pain increased any further or continued for another 30 minutes without any relief, that I'd seek medical help promptly. Thankfully, the pain did eventually begin to slowly decrease in intensity, avoiding the ER this time, with lingering but more tolerable pain afterwards. I admit that this situation could have been handled differently. I was not thinking clearly, possibly putting my health at risks, which I firmly suggest that no-one else doing. All I could think of at the time was how to make the heat numb the pain more, how to make sure that I kept calm with my breathing, and surviving 1 minute at a time. In this example, my response to "how are you" was complicated because I was fearful and in some of the most severe and extreme pain that I've ever been in at home. My response was to tell my kids what they wanted to hear, and I wanted to be true, so they would remain calm. I didn't want them to see the reality of my pain or cause them to worry about me. I just wanted the pain to end. Mentally, I was okay, I just had to keep holding on until I could feel decently okay physically.


• Hospital and Medical Appointments always seem to make the "how are you" question tricky to answer, simply because I don't want to give anyone the wrong impression. If I say that I'm alright, then why would I be at the doctor in the first place? If I don't say I'm okay, will they think that I'm having a difficult time coping? I want and need them to understand my symptoms so that they can help me, but don't want to come off as an emotional complainer. More often than not, I try to answer it with an "I don't know" or "I'm hanging in there." I am well aware that these answers are vague, but hope that the remainder of the appointment will lead to more clarity. 


• A family friend or family member will sometimes ask me "how are you". Knowing that my immediate family understands my situation for the most part, I will often tell them the truth, unless it's a really bad day. In that case, I often try to change the subject or downplay it to prevent worrying them. However, when it comes to a family friend or family member that knows I've been sick but may not understand the impact that it's had on my life, it becomes troubling. Do I say "fine" and walk away, leaving them with the wrong message, or do I try to elaborate?  The other day I was with my dad at the store when we ran across a family friend. Of course the initial pleasantries were exchanged and the dreaded "How are you?" was sent my direction. I hesitated at the moment, but decided that I would take the easy way out with an "okay". I mean I might not have felt great, but when compared to my new "normal" it was a pretty good moment. (Can't say day because unfortunately it didn't remain that way for long.) Unfortunately, or not, when she started to say that she was glad to hear it, my dad swooped in and told her that I wasn't doing great, but was having a more tolerable day.

As you can see the common question, "How are you?", can be complex to answer, with the normal "okay, fine, and good" answers carrying a variety of different meanings, sometimes accurate and sometimes just portraying what everyone, including me, wants to hear.

 
What do you think of when you consider the word "risk"? Does your mind automatically think of taking risks in positive or negative terms, or do you think of it as neutral? 

What about in regards to taking risks when living with chronic illness? Does the meaning of risk taking take on a different connotation or change in some way?  

In my mind, I visualize risks taking as being dependent on the circumstances at hand. I am aware that everything that I think, say, and do can be considered risky since everything can have good and bad outcomes.

Some risks are minimal with all results being decent. However, some risks can have extreme consequences, requiring me to take time to carefully weigh both sides of my options. I understand that life is unpredictable and is full of uncertainties, but I still attempt to reduce the threats and dangers, at least the ones I perceive manageable in the moment. 

​Currently, my risks tend to include:

1. deciding which medications I'm willing to administer to myself along with their possible side effects,
   
2. if I'll undergo certain medical testing or procedures in hopes of better understanding or relief even if they may not lead to any improvements,
3. whether or not to attempt drinking/eating something while realizing I'll likely feel bad physically afterwards,
4. and figuring out how transparent to actually be with my written or vocal words and actions.
5. In addition, risks are also involved if I let my pride interfere by halting me from making certain choices or pushing me to levels of overexertion.

When I take the time to recall risks that I have taken in the past, am currently taking, or see myself possibly taking in the near future - I recognize that some results are quite undesirable yet may also be worthwhile in the long run. Sometimes the results may be a complete mystery. Regardless, being human, I think that it's only natural to hesitate when trying to manage my risk responsibly.

A couple of months ago, my insurance decided that I no longer needed a Home Health nurse to come out once a week to de-access and re-access my central line. (I have a central line, Bard PowerPort to receive IV fluids 5 times a week.) At first this news was not only surprising, but kind of scary. As a result, a Home Nurse came out twice to teach my step-daughter how to carryout the switch instead. Talk about nervous! I was confident that she would be able to learn the process, but couldn't help but fear how long it would take her, the increased risk of already elated risk for line infections. Would we be able to successfully change the huber needle and dressing under the directed sterile conditions? So far, she has been fantastic at accessing my PORT weekly, without any complications.

This past weekend I remained home while my family went away for a weekend trip to the water park. While I don't like being left behind from vacations, I welcomed a little bit of "me" time. As crazy as it sounds, I'm still trying to physically recover from my outing earlier this month. Well that and the difficulty sleeping due to numerous nightmares each night over the past month or two. My lack of patience and levels of irritability have increased, which to me is a cue that I'm in need of some quiet 1 on 1 reflections.  

During my necessary "me" time....
I enjoyed bonding with our new kitten. 
I attempted to journal and blog - both of which were unsuccessful.
After deaccessing my PORT, I took a couple of long relaxing hot baths.
I turned up the speaker volume and listened to my favorite songs.

For some reason, the above just didn't quench my thirst to feel "normal" enough. I have spent so much time trying to be extra mindful and careful of meeting my medical needs and preventing (if that's even possible) undesirable symptoms. I've tried to stick solely to tube feeds, IV hydration, and only extremely low volumes of liquids. Quite literally, I was and am sick of playing it safe, to only feel discouraged and abnormal.

I wanted to feel at least semi-normal. I wanted to take a chance at seeking and maybe even achieving some non-sick normalcy, even if it meant that I would have to face some consequences. However, at the same time, I was well aware that I didn't want to risks stupidity or create any harm.

The thing is, I don't know what I am expecting or in search of. I know that there's a large spectrum of normalcy. Not everyone is the same. My normal is not the same as the next person's normal or the next. We all have our own "normal" which constantly evolves with time. Blah blah blah......

But what about when you look within yourself or at yourself from a different perspective and you no longer know what your normal is supposed to be like anymore? What about the times when you feel like a stranger in a stranger's body with a stranger's mindset? How is any of that normal? How do you accept your normalcy, whether it's desired or not, without completely retreating or withdrawing from yourself and others?

Because to be quite honest, I'm exhausted from trying to be normal in everyone else's eyes while also trying to make myself understand and accept that my current normal can be ok.

More recent deaths, both in my physical and online communities, cause me to contemplate how I can better improve the quality of my life. Anyone can become sick or sicker at a moment's notice. We ultimately do not have complete control over our health, no matter how much we may try. Similarly, tragic accidents happen everyday. We can try and take preventative measures, but those measures may or may not be enough to provide us more time with loved ones while we are here on Earth.

Realizing this confirms just how important it is for me to make each day count for something. My goal is to feel as if I am living, not just existing or wasting space, so when it's all said and done I'm not full of regrets. This is easy to say, harder to do, especially when attempts to "live" can cause immense fatigue or drastically increase my symptoms. Achieving an acceptable level of balance that respects all areas of my health (physical, emotional, and mental) while also limiting frustration, minimizing undesirable consequences, and reducing regrets is undoubtedly extremely challenging and even troublesome at times. 

So what can I do?
How can I encourage myself to redefine my life with illness without sacrificing too much of me? 
Below are my current plans of action...

Foster or participate in positive moments to reflect on with the kids
Maintain memories by regularly writing in personal journal
Work on completing the ALL ABOUT ME journal to be passed down to my kids
Create Picture DVD videos for each child from old picture film canisters and memory cards
Focus on and appreciate all of life's blessings, no matter how small
Fight for the best possible healthcare
Spend quality time with kids and family
Stay up-to-date with research so I can make best educated choices
Help others along health journey by sharing awareness, answering questions, and offering support 
Cuddle time with Pets
Consider how I can continue to grow as a person (hobby, books, writing, online class, etc?)
Have courage to live life true to me not others' expectations
Take time to make conscious decisions each day that fulfill my personal needs/roles 
Take reasonable risks while accepting and being patient with myself during the consequences
Live life less seriously to enjoy more moments in the moment
Respond to myself the same way that I would treat a friend going through something similar

Undoubtedly, no matter how devoted I am to the above goals, things will not always turn out the way that I expected or wanted. I will never be able to eliminate or avoid all regrets. Bad decisions will sometimes be made as I'm only human. However, when looking back with 20/20 hindsight, I need to remember why I made the decisions I did and remind myself about what my intentions were at the time. Even if I don't like the end results after some of my actions or choices, if they were made with the right intentions in mind I should not burden myself with any regrets. 

Living life with chronic illness does not mean life will be full of regrets. Life is what we make of it. 

Pictures worth a thousand words?
I tend to disagree.
Pictures can be misleading,
An inaccurate image for others to see.

A smile on your face 
while withering with nausea and pain.
Essentially trying to "LIVE" life
Hiding sickness that's constantly a strain. 

I am so angry with my body. I am extremely frustrated at how much deception is occurring as a result of dealing with this damn sickness day after day. 

Once in a while my mind and mouth say "Try a little ---- yogurt, milkshake, applesauce, mini muffin, etc. (Mind you, only 1 is attempted during the day and even then usually only a couple of times each week.) They coax me along,  "It will be delicious. It shouldn't cause you too much trouble! You won't regret it. What's the worst it can do? You need to keep trying so you get additional nutritional intake and to avoid more damage to you digestive system."

Initially, my stomach says "That wasn't too bad. It tasted good. I'm really full but I think I can handle this. Thank you." However, my stomach and mind then turn on me. They mastered deceiving me once again. Out of nowhere, no matter what I'm doing, nausea and pain hit me hard a few hours later, if not earlier. My mind first responds with "It's okay, at least it was good. At least you were able to enjoy a little something. We've got this!"

Then disaster hits when side effects continue and intensify. "What were you thinking? How stupid can you be? Why are you going to keep doing this to yourself?!!! You deserve the pain and nausea because it's your fault for trying a little something in the first place."  My stomach chimes in with it's attitude of "you will now pay for putting me through this hell. You want to keep playing with me, testing me, well guess what, it's time for you to be punished. I'm going to make you feel as awful as possible. Just remember, you are the one that wanted to take the chance - now you can deal with the consequences." 

See the deception!! It's unexplainable and disturbing for sure. But that's not all!

Physically, I deal with deception as well. My mind wants my body eager and active, but my muscles do not always agree and definitely do not like to cooperate. My muscles and mind work together to tell me that I should be fine if I do this and that. They tell me that it would be fun or nice. They remind me of how much I'm missing and encourage me to be more actively engaged so I don't miss out on life.

Sounds great, right? I mean doesn't everyone want to spend time outside, go on vacations, go shopping at the mall, or take scenic walks with their loved ones? Wouldn't activities help the family be closer, make life more enjoyable? So I spend hours, days, or sometimes even weeks to decide if I can be courageous enough to take the chance. "What kind of complication or consequences will I have to undertake? Can I successfully survive the consequences?"

Finally, I gain enough confidence and decide to agree to live more. My choice may be as simple as going shopping, attending a movie, or taking a calm relaxing vacation with my family. In the moment, I go all in! I mean, if I'm going to be required to face consequences afterwards, I might as well enjoy the moment to the highest maximum level.

​My family and I do try to make as many accommodations as we can beforehand. Most of which, I tend to agree with (with the exception of using a scooter). I don't like admitting that I need to take a break, leave early, sit back and watch others have fun, or cancel. If I start something, I will do everything in my power to complete it as expected. I will not look for excuses or express too many complaints. Lots of times, it's my family that sees when I'm physically struggling and reevaluates and/or makes adjustments to our plans. After deceiving my body enough to participate in life, allowing adrenaline and emotions to take control of my actions, my body becomes enraged. My muscles and energy crash on me. Then my body furiously punishes me for days and sometimes even weeks. Leaving my mind to feel deceived as well.

Another example of deception is when my mind and body try to deceive others with the outward appearance that I portray. With a smile on my face, I try to convince others that I am fine, that I'm okay, that I am strong enough to handle things, and that my shortcomings do not bring me down. I try to persuade them, regardless of how bad I'm actually feeling, that I have things under control so there is no need for them to worry about me anymore.

As previously stated, it's quite apparent that I have become a body of deception as a result of my chronic illness and it's impact on my life physically and mentally. But, I must admit, this body of deception does at least allow me opportunities to feel alive.

I absolutely love this song my Micah Tyler! So much truth in his lyrics!! 

Like everyone, my life has been a mixture of emotions. My life has been a ride of the most extreme highs and lows. I have laughed with joys of delight, cried tears of hurt and heartbreak, been scared out of my mind, completely confused and lost, proud of others and my own accomplishments, furious, disappointed, a heart overflowing with love, and many many more. Through all of that, there has "NEVER BEEN A MOMENT" when God was not right by my side. 

Through good and bad times, well and sick - God has always stayed true to me. My faith has been tested over and over again. My life journeys have pulled me in all different directions. But never have I been left alone. God's never-ending love has carried me when I was exhausted and ready to give up. God's love has been a comfort when my sorrows were drowning me. Without God's constant love and grace, I would no longer be surviving. Without a doubt, His countless blessings help give me all the strength I need to carry on. 

The most important, special, and happiest days of my life would never have been possible without God being right by my side. My doubts, pains, and sickness would completely destroy my mind, body, and spirit, if it wasn't for God's continuous guidance and love.  My mistakes would never have been forgiven without God's love. I  know from the bottom of my heart that I don't deserve all of the magnificent blessings and love that God provides to me daily, but I appreciate them deeply nonetheless. My precious children, loving family, closest friends, favorite doctors and nurses, all have helped provide me with the courage and clarity that I need to continue moving forward, regardless of how I am feeling physically or emotionally. All of which were and will always be the result of God's love and blessings.

 A positive attitude is essential in managing life and all of its' changes, including ones that are unexpected and appear to be undesirable. It's important to remind yourself that even if you are saddened, worried, or angry about an unexpected change, the final result may not be completely negative. Just because it feels extremely negative at the time, it will not necessarily stay that way. Sometimes, what seems like a problem, or even a disaster, could actually be a blessing in disguise. A negative event may help strengthen your ambition, motivation, faith, and emotional strength when all is said and done. The change may help improve the relationships that you have with family, friends, God, or even yourself. Eventually, the change can make you realize how strong and resilient you really are. Changes can help you reevaluate your priorities in life. They may also lead to new experiences, personal progress and success, new connections. The occurring change may not be easy to begin with, may even feel like a let down or leap in the wrong direction. However, in the long run it may help you make a difference in someone else's life or set things in motion to make you healthier or happier. Saying that, sometimes these unexpected changes surprise us. And yes, undoubtedly they may increase fear, heartache, and pain which are all signs that you are ALIVE! Emotions may go haywire - but isn't FEELING something better than feeling nothing? Trust me, I know that it may seem like life’s out to get you, simply because all you might be able to see is the bad, the worst case scenarios, the despair; but try to hold on to the possibility that eventually some silver linings will pop up. Heck, these unexpected changes may actually end up doing more good than harm in the long run.

At least that's what I'm TRYING to tell myself, trying to convince myself of this time. I can't say that I'm successfully achieving this thought pattern at the current moment, but I am TRYING. And well, sometimes that's all that we can do. Hold on tight and try to remain optimistic.

​In the midst of changes, current and upcoming, what can I do to actually better prepare myself? What plan can I put in place to make changes and transitions more tolerable?

​1. Focus on doing better at living in the moment. Don't make any long-term plans or let my mind drift too far down the road of uncertainties and fears. The worries may be all for nothing. If I cannot control the actual change from occurring or the outcome, why waste energy on what-ifs that may or may not be an issue? Instead I should consider what I do have control over.
​
Sounds great, right? I mean, it makes sense, would be logical, but is definitely challenging. I admit that I have quite a lot of room for improvement with this thinking process, especially when considering the changes I'm facing in regards to my medical team!

​So, how do I apply this advice in my current situation? I'm aware that I'm unable to change the fact that I have to deal with a new home nurse and in a couple of months, a new GI. (Both of whom have been an essential part of my medical team. Both of whom have helped me manage my health, understood my issues, and respectfully and empathetically communicated with me.)

​- I need to attempt to resist fighting my response and emotions. There is nothing wrong with voicing my fears, sadness, anger, frustration as long as I allow myself to express the emotions in a healthy way and then take a breath and continue forward in the best way possible.

​- I need to assess the situation by gathering pertinent information and evaluating what specific actions I should take to make the transition even smoother. For example:
​      a) writing a letter expressing my appreciation to help find closure,
      b) filling prescriptions prior to insurance and physician change,
​      c) contact GI early about medicines I need his assistance with to receive insurance coverage,
​      d) write a list of questions/concerns to discuss with my current GI before he moves
​      e) attend free online webinars to be better prepared for doctor's appointment
      f) meet new GI at final current GI appt to possible help ease the transition
​           
- I need to take a stand for myself by determining what is necessary for me to receive appropriate care, be willing to share (yikes) important information,  and be confident that I know myself and am able to advocate for myself better than anyone else.

​- I need to stay open-minded, yet still remain cautious, until I get a good feel on how the new members of my medical team meet my healthcare needs. Reminding myself, that they will likely not be as awesome as the dream team I had, but that doesn't mean that they will be awful. Just need to give them a chance and then reevaluate if I believe that they can at least be adequate enough.

​- I need to hold on to faith that God is in control and will help me navigate these troubled waters.

​_ I need to maintain hope that my current GI will continue to look out for my best interests by choosing who will be in charge of my care when he leaves and by effectively educating my new GI about my medical issues.

3. If all else fails, or if I'm not comfortable with any member of my medical team after giving them a fair opportunity, then I need to remember that I always have an alternative plan available. If my new doctor or home nurse does not meet my acceptable expectations, I will begin to search for a different new doctor and/or nurse. (Without a doubt, I do NOT want to end up having to implement this plan.)

What other choices do I have?

With admiration and appreciation, I thank all of the phenomenal doctors that have been a part of my medical team. Inpatient or outpatient, doctors in all areas and specialties have the ability to make a lasting difference and impression in my life as a patient. The experiences that I've had, good and bad, have made me more aware of what I expect, need, desire, and appreciate from my medical providers.

​Today, I want to personally and publically thank some of the most incredible doctors that I have worked with along my medical journey. Even though I would like to share their actual names, respecting their privacy is more important.

​Dear Dr Spectacular,

Thank you for being my doctor
​Over the years, you've learned who I am.
My health journey has been better, with you being a part of it.
​I appreciate your trust and perseverance.
​Through your actions and encouragement, you've kept me from giving up.

Thank you for being by my side,
​Calling me out, when you knew I was downplaying my situation or symptoms.
​Thank you for choosing to listen with caring and compassionate attentiveness,
​For questioning me and having open dialogue to gain more clarity,
For communicating with my family and other medical providers when necessary.

Thank you for being REAL, empathetic, cautious and never intimidating,
For your honesty and for the mutual respect we've shared.
​Thank you for helping me to remain optimistic, especially when my health is most challenging,
​And for your willingness to keep searching for the most effective treatment plan.
​
Thank you for taking time during our appointments, never making me feel rushed,
​And for seeing me as a person, not just as a patient case.
Thank you for always being prepared, with alternate back up plans available and ready.
​Thank you for understanding ME, remembering previous encounters, & not just following my chart.

Thank you for encouraging me to communicate between appointments,
​And for quickly responding to my updates and questions, even if I was unsure about sharing. 
Thank you for taking me seriously, not writing me off or blaming me when an easy solution was nowhere to be found.
​Thank you for ensuring that I've always felt safe, respected, and heard when under your care.
​
Thank you for taking the risks to invest your time and attention to my health needs,
For tolerating my silence, shortcomings, and attempts to avoid "bothering" you.
​Thank you for the countless times you've reassured me that I was never a bother,
For your confidence, kindness, knowledge, curiosity, and eagerness to assist me.
Thank you for having the ability to see through me to the reality of my health's impact on daily life.

​With the utmost gratitude, I express my appreciation for you.
​I thank you for the positive impact you have made in my life,
​For always being patient with me, while also looking out for my best interests.
We may not have all of the answers or solutions, but
I thank you immensely for the improvements we have accomplished.

Thank you for being a spectacular doctor!
Happy Doctors' Day 2017!
​Trish​​

Changes are coming and I can't deny that some are worrying and even scaring me. Over the past year I have worked really hard on trying to let my guard down. I have attempted to allow my drawbridge to open for others to come closer. It has not been an easy task for sure, but slowly and cautiously I have accepted and allowed other people to know me; to know not only how I appear and portray myself, but also the me I try to keep hidden. I have allowed a few to slowly cross over the threshold and witness a portion of my inner thoughts and feelings, both physical and emotional.  These selected few were not granted access to my heart or mind until they earned my complete trust, and trust me, that is not always as simple as it sounds. A few have been caught along the edge, not by any fault of their own, but because I have begun to  draw the bridge back to me. Fearing the unknown and being skeptical of what's to come, I can feel myself returning to defense mode, not that I ever felt entirely secure. I can feel instinct warning me to protect myself from harm. Warning me that I can't allow myself to be hurt any further. I can admit that this may not be the best decision, but for emotional sakes it feels like the only answer.

​You see, instead of building a wall around myself, I envision it more as a drawbridge. Depending on my comfort level, my connection with someone, and the situation at hand, I adjust this drawbridge. God is the only one that is granted full access 24/7. Everyone else is granted permission based on who they are, why they want to be here, what harm is possible, and even how I am feeling on that particular day. The purpose of my drawbridge is to help control and minimize pain, misery, trouble, and heartache. It is suppose to help strengthen my defenses and protect my vulnerabilities. But it's not perfect; I do make mistakes at times.  Unintentionally, I sometimes stall or even deny access to some really great people, people I love, people that I respect, people that I should trust, people that could possibly make a positive difference in my life, if I'd just give them a chance. Confusing, right?

​Let's see if I can clarify.  Over the past couple of years, I connected and created friendships with some phenomenal people I met online as a result of my health. Together, we share our similar health experiences and journeys, as we can relate to each other so well. No one else in my life knows the complete truth of how awful I often feel or the severity of my illness-related symptoms. Symptoms I was trying my best to cope with independently. However, my new friends could/can relate. I was no longer alone. I found friends that I could talk to because we could understand each other plight. They, too, were/are courageously experiencing and enduring some of the same struggles as me. Our friendships were/are invaluable, needed, and appreciated. Though I still have friends that I connect with online, and a few that I've chosen to remain very close with, I have found that I'm distancing myself from becoming closer friends with others. Why? Because too many of my close GP friends have died and others are currently fighting for their lives. That pain hurts!!! I don't even know how to describe the heartache it causes.  In an effort to protect my body and mind from the sadness, I find myself closing my drawbridge. Isolating myself from others that understand, simply because I no longer know if I have the strength to witness & deal with sickness and death over and over again. 

Friendships are not the only relationships being impacted. In the past few months, I have been more honest with how I feel medically and emotionally with my family and medical team than I EVER have before. Heck, I've been more honest with myself as well. It's been a slow journey as I slowly and carefully decided how secure they made me feel. Some days I've been more guarded than others, but for the most part I've been learning how to be more open. I recognize the value of having my family and medical team more aware of what I'm actually dealing with. But for some reason, this transparency doesn't come easily. No matter how open or to what level I desire my drawbridge to be extended, it's always angled with guards on standby ready to raise the bridge at a moment's notice. The past couple of months I've allowed the drawbridge to slowly open further and further for my family and medical team. Unfortunately, after the recent news of a undesirable change coming in the near future, I'm reluctantly fighting the guards. I don't necessarily want the bridge to be unpassable, but it appears to be automatic. I'm aware that I need others including my family, friends, and doctors to understand my health in order to best help me. I need their assistance in managing my lifestyle changes and aide in searching for effective improvements.

Nevertheless, I can feel the drawbridge closing in around me in an effort to protect the inevitable. I don't want to withdraw or detach myself from others, but starting over scares the hell out of me. I'm exhausted in every way imaginable and literally just tired of retelling my story to medical providers. I don't feel like revalidating myself and health issues again. I already have a hard enough time finding the right words to accurately explain my current issues. Starting over and trying to catch up new medical professionals on my health history just takes too long and is frustrating, especially since they'll never understand anyway. So why even waste our time or my precious energy?

​I have no ill feelings toward anyone on my medical team that has to leave in order to fulfill their own individual goals. It saddens me, yet I completely respect them for pursuing their personal dreams and plans for the future. I just want a medical team that's able to "get me" and truly "see me" the way my current medical team does. My current team may not have witnessed the beginning of my health journey, but they have witnessed enough to recognize when something is wrong and are familiar enough that I don't have to continue restating my health history.

​To be honest, right now I'm uncertain if I'm even capable or willing to lower my drawbridge enough for new people to join me. I'm honestly not sure that I want to take the risks anymore. I've been so fortunate with the healthcare I've been receiving, that it has to be only a matter of time before I begin to have negative healthcare experiences again. And that I can't handle.​

​Living with chronic illness can be extremely frustrating and complex. All of the sudden, life no longer appears the same. It takes on a completely new view. Simple things that were taken for granted are now appreciated more than ever. Not only do you have to adjust to life style changes, but your outlook on life in general may change as well. At times it may even feel like you are no longer you, almost as if you are a character in someone else's story. Regardless of who you were when your illness began, all of a sudden you begin to become an "expert" about yourself and your condition. New knowledge about every aspect of your illness (illnesses) becomes a part of your everyday language; diagnosis criteria, medical terminology, symptom descriptions and explanations, diagnostic testing, treatment possibilities, coping strategies, etc all become familiar common day to day discussions.

​Additionally, the relationships you have are often altered. Some friendships are lost as new ones are created. Some connections are strengthened where as others diminish. And that's ok, because you are no longer identical to the person you were before your illness. Sometimes the paths we are traveling do not coincide with the paths that others are traveling. This is not always an easy concept to accept, but with time you will be able to determine the people that are necessary to accompany you along your health journey. Through experiences you will be able to discover which relationships provide you with the encouragement and support that you need. Be patient and remember that you're not the only one that is facing a change in their life. Everyone has their own circumstances to navigate.

​Everyone's experience will differ, even if the medical journey has many similarities. The dynamics of friendships, families, medical teams, and colleagues as well as individual personalities all play a part. I could go on and on all day describing the way that my personal relationships have changed. Today, however, I want to focus on how the relationships that I have with medical professionals and my communication with them has been influenced by my illness.

​During my childhood and early adult years I did not put a lot of thought in characterizing nurses and doctors. Basically, if I needed a flu shot, had an injury that needed to be looked at, was dealing with a cold, or sick with a "common" virus that was being passed around, I could simply find a doctor to visit. It really didn't matter to me which nurse or doctor I saw. There was a blanket trust that they would know what was wrong, share with me how to treat it, and then send me home to recover and feel better. I did not understand the importance or value of remaining with a specific doctor or taking the time to create a bond. During this time any nurse and any doctor could meet my needs, whether they had seen me before or not.

But now that's not true. When plagued with a chronic illness you learn really fast how important it is to actually create a medical "team". A team that knows you and understands you. A team that will work with you to devise a "game" plan. Communication, empathy, and compassionate care all become necessary, along with their medical knowledge and expertise. It's no longer a quick in and out, routine, easy fix. The relationship with your physicians and nurses matter now. You can no longer survive with just "any" doctor. The type of relationship formed can be extremely powerful, possibly even a game changer or life saver.

Unfortunately, assembling an effective medical team that meets your personal needs is not as easy as it sounds. Personalities can clash and the type of care that you each expect and envision can differ greatly. A single doctor and/or nurse can completely ruin your perspective, can be dismissive, discouraging, and make you feel as a failure or lost cause. On the other hand, a single doctor and/or nurse can be the light on your darkest days. They can offer encouragement and provide you with hope for the future just by taking the time to show that they care about you as a person, not just a case number.

I am fortunate to have a medical team that I trust, respect, and am comfortable with. In my heart, I truly feel as if they are here to help me along my health journey. They may not have all of the answers, they may not  hold a key to the cure, BUT they ensure me and show me with the actions they display toward me, that they will not give up on me. I believe that they will continue to help me search for improvements regarding my health. They listen to me and actually seem to be invested in figuring out how we can work together to make my life with illness more tolerable.

Sometimes, I'm in awe at how proficient and knowledgeable they have become at understanding me. When you realize that you are surrounded by doctors and a nurse that can uncover the truth about how you feel (even when you're trying to be strong and brave), then you also realize how comforting it feels to know that you are in great hands. Unfortunately, not every doctor or nurse fits this criteria. In fact, it can be a rarity when dealing with chronic illnesses. However, my current medical team is phenomenal! I can not deny that I feel blessed with the care that I currently receive. I appreciate and value my medical team more than they will ever know, though I do attempt to express my gratitude with them. I may still have plenty of health struggles, but I am relieved knowing that my best interests are being looked after, at least for now.

Even with a phenomenal medical team, I still have challenges. If you've read my previous blogs, it's no secret that I have a difficult time being completely open about my symptoms and how I feel. All  too often, I hide how awful I feel and have trouble expressing the true severity. My family and medical team are well aware that I tend to downplay my symptoms a lot. The majority of the time, I remain quiet in an effort to remain positive and to keep from annoying or bothering. What they may not know, is that I have never been as open with anyone, especially doctors, as I have been the past couple of years. I'm still on uncharted waters. I really want to be completely honest as soon as issues arise, but emotionally I second guess myself. Before messaging or calling them, I spend hours, days, and sometimes even weeks trying to determine if it's worthy of bothering them. I'm not trying to be stubborn, but instead wanting to demonstrate my respect by not wasting any of their time. I value their support so much that I do not want to chance pushing them away, irritating them, or becoming known as a constant complainer. I try my best to make sure that I keep them updated, it's just that sometimes I'm not as quick or as clear as I should be. If I'm going to contact my health team, I want to be sure that it's important - not something that I should be able to correct on my own and not something that will improve on it's own if given enough time. My doctors, home nurse, and family members have done everything in their power to encourage me and persuade me to be completely open and not hide or minimize my struggles.

In an effort to better communicate, I must first determine how to distinguish the difference between updating/sharing concerns (which is desirable) and complaining (which I want to avoid entirely). I believe that updating and keeping my doctors informed is essential in order to make progress and improve my quality of life. If they ask, I do always try to answer as honestly as possible. I acknowledge that I need to reach out if a new issue arises, if I'm feverish or experiencing chills, or if the severity of my symptoms intensify for days after days and are not improving with our current treatment plan. Updating can be necessary if there's a possible treatment plan or adjustment that can be made to improve my current condition. On the other hand, complaining would be best described as a nuisance nag with no action or treatment expected in return. I feel confident that I do a great job at not complaining to others, for the most part,  but can likely do a much better job at updating. I also admit that many times I hesitate or  procrastinate too long, but it is always with my best intentions and out of complete respect for my medical team.

​In conclusion, many aspects of your life can change when living with chronic illness. Your relationships with family, friends, self, and even medical professionals are certainly going to change. Your power lies in how can you make these changes work in your best interests.

What can you do to ensure that you are surrounded by the care and support that you need and deserve? My current goal is to allow my family and medical team to learn how they can better help me. In order for this to occur, I'm going to have to be brave enough to let down my guard some more and become a better communicator. 

How often do you sit back and contemplate which direction your life is heading? Is it on the course that you imagined or dreamed of? Most likely there are dreams of yours that have been ignored, set aside, or possibly some that you are still striving to achieve.

​Today, a friend directed me to a powerful video message. It was extremely thought provoking and inspiring, similar to a few other motivational speeches and songs that I've listened to recently.

When times are difficult, it's so easy to sit back and try to "wait" it out or hide. But how often do we actually "FIGHT" for what we want, persevere with relentless drive for the dreams we envision, use our power of our mind to change our circumstances? 

​While listening to the video, I tried to look within my heart and soul. I'm not going to lie - I experienced a myriad of emotions. Part of me became sad because I honestly felt as if I was giving everything I had and more to make my dream of being an inspirational teacher come true. I pushed myself through sickness and pain, spent endless hours searching and planning for meaningful classroom lessons and experiences, laid my heart out to reach and connect with students that didn't see the potential that resided inside of them. I LOVED teaching with a PASSION - it was, without a doubt, a dream come true. A career that I enjoyed and that made me feel prideful. I honestly felt like I was making a positive impact on the lives of others, thought I was using the talents that I was blessed with to live a life full of purpose. I was sure that I was taking the path GOD intended me to follow.

When I became sick, I admittedly didn't listen to my body's personal needs. My body and my health, were not my priority. Teaching and being an active parent were much more important to me. I literally continued teaching, working, and staying on the go with my kids. While feeling worn down and sick I continued to stay busy with all of their school related and extracurricular activities as well as all the "motherly" duties I expected of myself.  I even took classes online at night for a few years so I could earn my Master's and better provide for my family. Regardless of what my body was trying to tell me, I was strong minded, strong willed, and gave everything I had to live the life that I envisioned as a mother and teacher. I was determined to not let anyone or anything (including my own body) destroy my desire for teaching. I did not bother to consider or listen to the advice that my family kept expressing. Instead, I kept fighting and kept pursuing my dreams until my body ultimately crashed. I did not value my needs, because to me that felt as if it would be selfish, expressing weakness, and was just not a priority. In retrospect, and as an outsider looking in, I realize that to give my best, I need to be at my best. And that can only happen when I fulfill my personal needs, namely my health. Ignoring my health needs and symptoms will not make them disappear. I've tried that thinking over and over again and all it does is lead me to more issues. Unfortunately, some of that ideology came from medical "professionals" (such as doctors and nurses) that minimized my concerns and the impact it was having on my personal life, when I did finally reach the point to actually ask for help/assistance.

​As I reminisce now, I'm not sure what to think. Could things have turned out differently if I'd taken different actions? Did I inadvertently cause self-destruction? Did I take my health and time with family for granted? Was I missing something? Even though I was living with purpose and drive for what I wanted in life, was there something else that GOD had in mind for me?

​I don't know the answers to these questions. Have I made mistakes in my life that make me wonder what if? Sure, everyone does. Was life peachy clean? No, but I knew what I wanted to do and I did whatever it took to be successful as a mother and teacher. At least that's what I thought I was doing.

​Now, look at me. Illness has overcome me. I don't want to be a "victim" but I also don't want to make my situation worse. I still have a difficult time listening to what my body needs, but attempt to make my health a higher priority. My dreams of making a difference in the classroom has ended - at least for now. My role as a mother has been altered. Activities, hobbies, and interests that I once enjoyed are not possible at this time. In the beginning, I was persistent that illness was not going to interfere with my personal life. Wow! That was a joke - the harder I fought for normalcy the worse my health declined.

​For the past 4 years, I have tried to determine what the right balance for my life is. How can I fight with mind, heart, and body to accomplish my dreams without causing more damage? How do I determine which dreams are worth pursuing and which are too costly or too far out of reach for my reality?

​Life is not meant to be easy. We are meant to be great - not average, but you have to be willing to put forth the work and heart to make it a reality. But how? I understand that we grow during our most difficult battles. I'm aware that there is so much left for me to learn about life, but which aspects are the most essential to fulfill in my lifetime?  So much time has already been wasted - so how do I make the most of what time I have left? Which dreams are worth pursuing? When one dream conflicts with another - what do you do? When giving 120% in one area requires me to compromise or give up on a different one because I can't envision a path that would effectively meet or surpass all of them, what then? How do I ensure that my choices are respecting my personal needs while servicing others to my full potential?  I am aware that not all of my decisions can be easy, that the most difficult decisions are the riskiest yet also have the capability of being the most worthwhile.

God is the only one that can see the future, so sometimes we have to take a leap of faith - and that's fine- but when life and health is so fragile - how do you determine which choices will lead to the most desired results? When health is an issue, where do you draw the line between making healthy choices and taking the risk of chasing dreams?

​(Just something to think about.)
​

Deep slow breaths, in through my nose, out through my lips.
In --- and ---- out...
In--- and ----out -
as I prepare myself for the dreaded but necessary trip to the grocery store. I look over the list of items that I need to purchase. Meal options for the next 7 days have been planned out in advance so we have everything we need for the upcoming week. Since I'm unsure of what each day holds, I've selected a variety of meals, the majority of which are simple enough that the kids can handle it without my help or with only verbal assistance. I've taken the time to rewrite and categorize the items on my list, so they are basically in the order that we will get to them as we shop.

This outing, like all of my other outings, are too much to handle on my own. My energy and stamina limited and unpredictable, changing in a moment's notice. This is an errand that Diamond , and sometimes Carmen, assist me with. We've learned by trial and error that grocery shopping first thing Friday or Saturday morning, 8-9ish, is the best on my body. It's not busy, in fact the store is basically empty of customers at this time.

​As I ride along in the passenger seat of the car, I look out of the windows contemplating what I will choose to do today. Will I challenge my body and walk the store? Will I listen to my body and drive the motorized scooter? Will I decide to protect my physical needs or safeguard my mental perspective? In my mind I flip back and forth, back and forth, unsure of what's in my best interests.

​Hmmmm!!! Which side is most essential for me today? I can easily ramble off the positives and negatives for each selection - some sensible, reasonable, and logical, others possibly insignificant, but all profound just the same.

​Experience has shown me that when I'm stubborn and decide to walk, I regret the decision a few minutes later. Pride keeps me moving regardless of how weak or lightheaded I feel. I will continue to push forward and face the consequences at the present time and for the following days as well. Headaches, wrinkled fingers, blurry vision, unsteadiness, internal shivers, and fatigue are just a few symptoms that often present themselves. Luckily I have IV fluids awaiting me when I return home. (Another reason I have selected Fri or Sat to go to the grocery store.) My family often gets annoyed with me when I choose this option, 1) because of the visible signs they witness and 2) because of the time and struggle it takes to recover. I on the other hand feel pride for sticking it out and being more "normal" at least for an hour or so, but left feeling disappointed and irritated when I realize that nothing has changed, that my body isn't better, and the physical price I have to repay.

​Utilizing the electric scooter for the time I'm at the grocery store is undoubtedly the wiser option to meet my physical needs. It makes my daughters worry less, it makes us all feel like I'm "safer" , it protects my limited energy and strength, and lessens the amount of time and degree of exhaustion that I will have to endure when I return home. BUT it requires me to face the fact that I'm sick! It's just another example of how I have lost my independence. It's a reminder that my body is weaker and more fragile than the elderly  that are able to run circles around me. While riding the scooter makes me feel better physically, prevents the severity of symptoms that follow the outing, and decreases the amount of time that it actually takes to complete the grocery trip, it hurts my spirit. Emotionally, it makes me feel inadequate, makes me look lazy, makes me question my need, makes me consider what others are thinking and/or saying. I know that it shouldn't. I understand that the reason they have the scooters in the first place is for people that need to use them. I'm aware that others don't know what my body has been and continues to go through - just as I don't know their personal story or what they are actually thinking (if they even are) about me. I know that I can't control others' opinions and that what they think doesn't necessarily dictate the truth of the matter. BUT admitting that I need help once again, that my body can't handle something else once again, that tools and/or machines are required for me to function ONCE AGAIN is disheartening. What am I becoming?

​As we approach our nearby Food Lion, my mind ponders about why I  am so determined to go grocery shopping in the first place? What is my ultimate goal?  I remind myself that I want to feel needed. I need to fulfill my desire to be a productive member of my family. Grocery shopping gives me a  pertinent reason to get out of the house and helps me feel more successful as a mother. If I actually go shopping, I can ensure that my family has something at least semi-healthy to eat during the week. Why do I elect to choose the dreaded grocery shopping as my weekly "chore" anyway? Isn't there something else that I could do to satisfy my thirst for a "normal" life? Something that I might even enjoy or that may be less draining on my body. If so, I have no idea of what that could possibly be. Grocery shopping is necessary and can not be avoided or postponed but for so long. I reassure myself that it is "normal" to do things that you dislike or hate to meet the needs of those you care the most about. It's "normal" for mothers to make compromises for their children.

​Apprehensively, I trudge toward the storefront's door.
What will my fate be today?
Closing my eyes I stop to take a breath and slowly breathe..
​in ------ and ----- out
in ------ and ----- out

​If only for a slight moment,  
I finally feel like a "normal" mom,
​completing a "normal" task,
with a "normal" annoyance....

​Gradually I reopen my eyes to my reality and the choices I have before me.
Which part of me will be victorious today?
​Will I successfully accept my body's physical needs, listen to my family's concerned pleas, and ultimately ignore all of my self-doubts and fears? Or, will I stubbornly tread through the seemingly endless grocery store aisles in an effort to demand some independence for myself?

​The decision may appear trivial or petty to many, but when your life has been turned upside down from illness, when everything seems to be spiraling out of your control, it's only natural to grasp on to whatever control you can have, no matter how small or minuscule the issue or task may be.

Desperately needing a vacation from myself
I have no more patience to spare
I'm losing sight of who I am
​Pain, Sickness, Emotions becoming too much to bear.

A haze quickly descends to surround me
​The cold harsh reality stings.
Settling fog makes it harder and harder to see
​While sickness and doubts effortlessly cling.

Confusion trickles down my spine
​as I search for my reprieve.
​Nausea and pain overcome me
​Tears, visible and hidden, shed as I grieve.

​My body holds me prisoner
​Chains and shackles holding me back.
​Enclosed by walls of burden
Praying my stability doesn't completely crack.
​
I try not to be resentful
​I attempt to handle it in stride.
​I know that God's right beside me
Willing and ready to be my guide.

​He has His purpose, that I know
​And believe it with all of my heart.
​He never promised it would be easy
But I never imagined that it would be this hard.

Today I am writing as the green candle burns in memory of 3, possibly 4, deaths in our GP community yesterday. The candle represents our sadness as we say goodbye, but also a reminder that their memory will remain always. I choose not to post every death in our group as it's just become too many, too soon, too young, and too sad. However, if it's someone that I was more familiar with either because of advocating or had become "friends" on FB, I share because it's more personal.

​Each death I hear of, whether close or just an acquaintance, stings as it reminds me that no one is guaranteed tomorrow and it's a reminder of how many "friends" I have already lost. As a result, I have not been participating much in the support groups anymore. I visit the support groups less frequently. I admit, they are a great place to visit when you have an issue and you need to vent to someone that TRULY UNDERSTANDS what you're dealing with. They are also an excellent place to visit if you want to feel useful and actually help other people that are experiencing similar health journeys. Great friendships can be created because you're able to relate to so well. However, reading about others' struggles, feeling their pain along with your own, and wirtnessing so many that are literally starving or dying is sad and extremely difficult.  You don't want others or yourself to feel isolated and alone,  at least that is the case for me. At the same time, you don't want to become depressed, saddened, and possibly even sicker by seeing and hearing the same horrible news everyday either. It's scary to watch friends come and go (literally because of death).

​So what are you to do? What am I to do? Currently, I have decreased the time that I am in the support groups. In addition, I very rarely accept friend request from other GPers. It's not that I don't want to know them better or on a more personal level, that actually feels great. Instead I choose not to in order to help protect my own heart and emotions. I am so very thankful and have been blessed by discovering some phenomenal friends to help me along the way. These friends I will always treasure. These friendships I will never give up. But I'm definitely more reserved and cautious when forming new connections. Regardless of who dies in our community, it hurts. But being a name that I've seen around is not as painful as reading the name of someone that I had closer personal ties with, a friendship with. I've admittedly been distancing myself from others as I don't want to face losing more friends to this awful disease and complications that comes with it.  I've lost too many new friends that I was close to all ready and don't want to face even more. Which is sad because there are some amazing people in the world that I would really like to form closer friendships with. But at this time I have to deny myself the joy of building new friendships with fellow GP warriors to prevent the pain of losing more friends and creating more heartbreak.

​Which brings me to the question of what do I do when my "friends" on FB pass away? To begin with, I "unfriended" some of them after they died - but that felt wrong and disrespectful. Therefore, for now I just let them stay on my "friend" list. Which is okay, but odd at the same time. Especially when past posts and their birthday reminders reappear.

How has Illness impacted my parenting?

• Conversations with my kids have become more indepth and occur more often.
• We appreciate the positive moments even more (kids and I) .
• Disappointments & missed experiences a plenty & more difficult to accept at times.
• Hesitation on mine and family’s decisions over what's the best action to take/not take. What’s reasonable, worthy & not detrimental to my health?
• Faith demonstrated and discussed
• I demonstrate and indirectly teach coping skills during difficult times, which can be helpful to my kids when the face their own personal challenges.
• Life lessons of flexibility, connections, importance of family, empathy, & unconditional love
• Less taken for granted.
• We enjoy the simpler things in life. (ex/ UNO, Clue, Coloring, Movie, Jenga)
• As a parent I am concerned about the impact that sickness has on my kids’ life. I don't want them to have unnecessary worries and wonder how much they truly understand.
• Impression of toughing it out/not complaining when nothing else can be done is modeled.
• Kids have gained knowledge and awareness of invisible illness and disabilities.
• Realization that future is uncertain & can change without a notice (good or bad)
• Unintentionally teaching them about care-taking skills - which is hard for me to grasp because I’m suppose to take care of them!! Not the other way around.
• Kids are learning to always express respect toward others because we don’t always know what someone else is going through, visible or not.
• Uncertainty when trying to make plans because I don’t know what later in day will be like, much less future days which makes planning difficult & sometimes impossible to keep.
• Mystery of how much my body will cooperate and when it will become too much. The kids witness unexpected changes and signs of pain, fatigue, nausea, etc. even during fun times.
• I worry more about what kind of role model I am for my children now. What will they think or remember about me and their childhood when I am gone? Will they only remember the tough times and sick times, will they look back & consider me weak and lazy,  will they forget how much I loved them & how much I gave emotionally to family, teaching, & survival?​ Will they remember the me (fun responsible teaching me) before my illness?
• Importance of family support is displayed continuously/
• Now I question if I will be able to be there for my kids in the way that they need me? I’d be lost without having my ​parents nearby to help drive me to appointments and being nearby to help with errands, be with me during hospitalizations, and more. What if I’m unable to help MY kids in the same way one day?
• My kids are more independent with their chores. They are learning the value and knowing how to help around house.
• Life experiences have taught them medical terminology, treatments, & possibly even new career opportunities.
• Indirectly I'm teaching them how it’s ok to ask for help, even though I often hesitate. (Honestly, THEY are probably teaching ME this more successfully than I'm teaching them.)
• My children are learning the value of not making empty promises. Honesty is best, even if it's difficult at the time.
• I'm more aware of my parenting skills, question myself more, but deep down believe that I’m doing the absolute best I can.
• My tolerance, irritability, & patience varies depending on how my day and symptoms. As a result, my children have learned to pick up on visual cues from my appearance.

In conclusion, I recognize that I can still be and still am the caring loving mother that my children need. My role as mother has not disappeared or decreased due to illness. Instead it has been altered in ways that I never expected. Worries, concerns, visions, participation, protecting, teaching, and loving my children are still very present - yet how I perceive the effectiveness of my parenting skills varies greatly, depending on my health situation and how I feel. Regardless of my illness and my lack of  being as active as I desire - my children will still receive everything they need and more from me as their mother.  For every example of what they are “missing”  as a result of my illness, there’s a replacement of something else they have learned or experienced about life instead.

My deepest goal is to raise children that……
-Experience and understand the true meaning of love and family,
-Recognize God’s blessings, comfort, and everlasting promises
-Develop empathy & kindness towards others regardless of their differences (visible or not)
-Are dedicated, motivated, and willing to strive for their dreams, even when obstacles get in the way
-Care about their personal needs (in an unselfish way) so they can take better care of their families
-Are willing to stand up and advocate for themselves (and others when needed)
-Feel the pride and love that I have for each of them
​--Are Healthy, Respectful, Respectable, Wise, Happy, & Successful in all that they choose to do in life
- Are aware of and never forget how important they are in my life and how much l love them.
​

Have you ever taken the time to step away from your body? Tried to discover yourself at a different angle? Determine what others see when they look at you? I don't mean just the outward appearance, but when they truly SEE YOU and everything you stand for? Have you ever wondered, why they choose to stay around? What do you even have to offer?

Today I am challenging myself to take a moment and glimpse into the window of my soul. What will I see? I am not sure. Will it be easy? Most definitely not. Could it be worthwhile? Let's hope so.

​So who am I?

​On the surface
I'm a woman, mother, daughter, friend, sister, aunt, and wife.
​I have blue eyes, brown hair, and try to keep a smile.

In the past
​I was an athlete, sport enthusiast, and elementary teacher.
​I taught from my heart with a desire to connect and make a difference.

​I've had accomplishments, achievements, and disappointments.
​Been surrounded by love, heartache, fears, and dreams.
​Related to me for sure, but not completely indicative of who I am.

The truth of the matter is that I don't always know who I am.
​My identity seems to have been compromised
by the illness that plagues and interferes.

I know that illness should not define me
​Though it's impact on life is quite severe!

​Hidden underneath I know I'm still here
​I am still me!
​A me that makes me look and live differently
But ultimately still me!

So who is that exactly?
I'm not sure that I can answer.
​But maybe if I lay it out
​I'll be able to soon rediscover.

I search for how to live with purpose, even more so now that I'm confused over what that could be.
I wonder if I can still make a difference, as that's always been one of my ambitions in life.
I hear the anguish and suffering from others trying to find relief, support, and medical teams.
I see the fears and concerns from my own kids and family.
I want to live with passion, help others, and not simply just exist.
I am me! Confused at times of what others want me to be.

I pretend to smile and laugh, even when I feel like screaming or crying.
I feel at times like an alien, lost and misunderstood with various foreign equipment attached.
I miss exciting adventures with my family, teaching, and even driving to places by myself.
I worry about the impact my illness has on my family, as I don't want to become a burden.
I cry internally as this is not the life that I envisioned.
I expected to be so much more than what I currently am.
Yet, I am me! Admittedly, at times it's very difficult for me to be simply JUST me.

I understand the importance of faith, courage, compassion, empathy, and perseverance.
I say that everything happens for a reason and that everything will eventually fall into place.
I dream of living with enthusiasm, creating loving memories with my family, and having fun without pain, nausea, or fatigue.
I try to be optimistic, to be appreciative, while also trying to accept the reality I live in.
I hope that others are able to truly SEE ME, the real me, even when I'm hidden from myself.
Yes, I am me! And that's not always a bad person to be.

​I write in my blog for self-awareness, healing, and to let others know that they are not alone.
I sing along with current Christian music to lift my mood when I am down.
I admire my closest friends that I've met online, encouraged by their inspiring motivation.
I appreciate my healthcare team that I am so blessed to be surrounded by.
​I love God, I love my children, and I love the rest of my family full heartedly.

​I am me! And maybe, that's all that I'm expected to be!

Why is complete honesty about my health, especially to my medical team, easier said than done?

I tell myself before each appointment, call, or email that I'm going to be completely honest and transparent, yet I continue to have difficulty relaying a true & accurate message when new health issues arise and/or current ones continue. Without meaning to, I often downplay severity of symptoms and situations by either softening the situation behind a smile, lacking descriptive details, or attempting to be positive and optimistic about what I am experiencing. I  honestly try to be genuine and transparent during my appointments but often find it difficult to express my thoughts and symptoms to the full degree that I'm experiencing them. Why is that, one may ask?

​A possible reason is because I have shared many of the symptoms over and over and over again with my medical team. How many ways can you say that your nauseated or fatigued? No matter how hard I try, it would be impossible to convince anyone that's not experiencing it the true impact that the severity of my symptoms have on my day to day functioning and quality of life. Most people feel miserable with being nauseated for a couple of hours or a day, I know I was prior to becoming ill. But now, it's a constant daily struggle and has been for 3 1/2 YEARS! My "good" day with nausea is likely comparable to a bad nauseous spell that I had 4+ years ago. I hear and see people complain about the stomach bug that's going around, how they were up all night nauseous, how they can't take anymore of the abdominal pain that began that morning, how weak they feel from not being able to eat for one entire day, etc. And I sympathize and empathize with them because I know the feeling, only mine is persistent and has lasted for years, not a day or two. It doesn't get better, it hasn't gotten better. It seems as though, with the exception of removing the pain due to my gallbladder and colon (which I have NO REGRETS about), that my issues especially regarding my strength, energy, nausea, and abdominal pain with oral intake only continue to get worse.

​Maybe part of the problem is that I don't believe that I could completely make them understand anyway, so what's the point? Sometimes, I just get tired of repeating myself. I've explained or shared so many of the same symptoms so many times over the years that I'm kind of immune to the words I guess. The severity level on the spectrum may fluctuate, but even when my "normal" symptoms are at the highest levels, I feel as if I am complaining over something petty or insignificant. I have, and I'm pretty sure so many others that deal with chronic digestive illnesses like me have as well, seen the expressions and heard the comments minimizing how destructive our symptoms are from our colleagues, friends, family, and even at times medical providers.

"Everyone has tummy aches sometimes."
"Yeah, I remember when I ate too much at the buffet the other night and I felt bloated and nauseous. I just took a Pepcid and in a couple of hours it settled down. Maybe you should try that?"
"If you'd just stop thinking about it and return to the real world, you'd feel better and forget about your stomach hurting or being nauseated."
"I'm tired too, but I keep going. I don't let it stop me. I just grab a coffee and I'll go to bed earlier tonight to make up for it."

What they don't realize is that though their statements may be true in the lives of some people, that's not the case for me or many of the people I've met from online support groups. If you don't live this life, it's hard to fathom it, and statements like the one's above (even if said with good intentions) sound critical to my ears and can make me feel like I'm being ridiculed. So why does that matter? One may suggest to ignore the comments or forget what someone else said, right? Well, it's not that simple. Because when I start to say something about the nausea, bloating, pain, or fatigue - in the back of my mind I can't help but think about how the words are going to be perceived.  I begin doubting myself. doubting being understood, and therefore doubting the possibility of any relief being found.

​There are times that I'm around people who are sincerely interested in hearing exactly how I'm feeling, want to know all the details, and need to hear them so they can best assist me. Usually, this group consists of my closest family members, doctors, and nurses.

Whereas my family may desire to know the whole truth, it's just not feasible or necessary all of the time. Sometimes I have to keep some things hidden from them as it's for their own good. They can't worry about me all the time! I have to make sure that they hold on to faith that I'm okay, or going to be okay. Because ultimately I want to be okay. I also don't need them trying to persuade me to reach out for help over every little thing. I know that they love me, but sometimes I have to deal with things on my own. I have to learn to live with feeling bad and then let them know when symptoms begin to intensify or spiral out of control.

​My medical team on the other hand, especially my GI, home nurse, and therapist, need to be aware of anything and everything when they ask questions. I need to be completely open with them about how I'm feeling, what's not working, my health concerns, and even sometimes my health fears. And though I want to, it's just not always possible. Maybe it's because I want to be better instead of expressing discouragement. I have to remain "strong" in the eyes of others (and self), which means that no matter how horrible I feel, I must remain in control of my emotions. If I end up crying or become upset when sharing my health complaints with my medical providers, I increase my risk of not being taken seriously. Instead of focusing on the actual problems, my doctor's attention may divert to anxiety and depression treatment, even if my tears are just an expression of my frustration from wanting desperately to feel better. That risk is not worth taking, so I sometimes have to distance myself and my words from my emotions. For this to happen, I believe that I become quiet, vague, and indifferent to the symptoms that I'm describing. I need to ensure that I'm hopeful (even if I'm losing hope), pleasant, and calm as I don't need to chance becoming incorrectly labeled, dismissed, or overlooked. Is this reasonable and wise? On the mind standpoint yes, though on the medical side I'm sure that it can be counterproductive as it may make diagnosis and treatment more difficult when the degree of my symptoms are not clearly understood or recognized.

​Furthermore, my resistance to sharing the most accurate image of how my health is going may reside in the fact that I ultimately do want to be better. I want to eat, I want to participate in activities, I want to be healthier, and I want to live instead of just existing. However, I'm not sure how achievable that is now. Being completely open and honest makes me vulnerable. Do I really want to have my fears of illness confirmed? Do I need to take the chance of being told that I have to just deal since there's no other viable treatment options? I am aware of the importance of being straightforward about my health, but avoidance just seems easier and kinder than facing reality. I'm not sure how much more negativity I can take, not sure how many more trial and error treatments I want to pursue, and to be quite frank, I'm uncertain how much more I can handle with this illness.

​If there's nothing else that can be done, if I am running out of opportunities for better health, then should I even continue trying? Am I truly worthy to receive effective help or assistance anyway? I mean, I am just 1 person in this world full of millions and millions of other people that desire better health and healing as well. The majority of which are much more prominent and beneficial to society than I am. 

I don't know, maybe I am just being stubborn with all these attempts to improve when I should just deal with it and accept that sickness is the path that I am intended to travel. Instead of grumbling about how rotten I feel, I need to adjust my thinking. Instead of thinking about how sick, fatigued, or weak I feel daily, I need to focus on being content with all the positive things that are going on around me.

​But once again, these words and ideas or much easier said than done!