Yesterday I was inspired in church. I felt that "light bulb" moments (as I like to call them) are often useful wisdom that is gained along a lifetime. Why not share that wisdom you just gained so that it can be passed on or corrected if it's a misconception?
A week or so ago I got a card from my brother's family. It contained a gift to help us during these trying times. In addition to the thoughtful gift, this card had many scriptures written on it to help anyone going through trials. I read them over. I was so appreciative of the gift, but the card had more meaning. I have recently been leaning much more on my faith to help me. I realized several months ago that my bible, that which was my father's, is packed away in a box in storage somewhere. So, I have been using my kindle and random other places to read the bible. I, myself, still find it very difficult to understand. The language is old and often cryptic. Sometimes the message jumps right out at me, but more often than not I need a little guidance. There was a particular passage that was on the card; whereas most were written out, this one was just noted (I see now that it was too long, as many Psalm or Proverbs are) so I took a mental note to look it up later.
It was Psalm 126 '...when the Lord brought home our treasure, all delights were like a dream; in defeat, a shout of victory; in the sand, a flowing stream. Mouths that once were parched with anguish, now with shouts of joy are filled; laughter now replaces sadness for the goodness God has willed. Bring us back to former glory, lost through the year's of exiles pain. Generations long forgotten, seek God's favor to regain. Those who plant their seeds with grieving, wetting soil with falling tears, shall rejoice in time of harvest, reaping hope for all those years."
I didn't have to wait long or dig through boxes to find my bible to look up the passage. In yesterday's church service it was used, and it hit me like a ton of bricks. I was feeling so vulnerable for my last blog post. I poured my heart out, showed all my weaknesses and fears, and basically told the world I was crumbling. This passage reminded me that the crumbling that is happening is only helping to make the future brighter. It is natural, normal, and perfectly fine for people to show emotions as I did. It is actually useful. Just hearing that coming from Him made me feel like I am doing fine.
Then the liturgist stood up to read more passages. Before she did her duty, however, she stopped to let the congregation know that her son was coming home from his last tour of duty. She explained that her son has been in the military 18 years and has made a career out of it. I don't remember exactly how many tours she said he has already done, but she said with confidence that this was his last. She was pleased to share that after all these years he is returning home safe. All of this was said with extreme joy but covered with emotion. Her voice shook as she spoke and she had to gather herself before moving on to her Sunday duties.
This was another "light bulb" moment for me. I thought of how incredibly stressful it would be for my own son to be serving for his country in a war. The fear every morning waking up wondering if he was going to be OK and the fear at night wondering if he will see tomorrow. The shear feeling of having no certainty of seeing your loved one again. Then my mind branched off to a possible wife or kids this soldier may have, aunts, uncles, cousins, siblings, etc. Having a family member serving must make so many proud of their loved one's sacrifices, but we cannot forget all the families go through here at home. I thought, "...and I've been feeling sorry for myself?! I wouldn't trade this pain and anguish for that. I don't have it that bad." I will be taken care of, and for the time being I am spending it with my family as we all should be. I just felt her joy along with all she must have felt these last 18 years.
I have a lot on my plate. This camel's back is about broken. Or so I thought last week and the weeks before as things just seemed to continue to pile on. My husband and son are going through this with me everyday. Although they do not feel the physical things I go through, they are on this journey in a different way. At this point, I think it is so overwhelming, none of us can see the others' perspective so we do have short fuses and occasionally overreact to unrelated things. But, I look at us as a unit, as a team, and we will get through this together. This will make us stronger, and we will have a greater understanding of each other thereafter (I can only assume).
Chronic illness, in any form, is a devastating and difficult life to live. This not only applies to the patient, but the families as well. I cannot equate illness to serving in a war by any stretch of the imagination. The only thought I can give is that the grass is NOT always greener on the other side. YOU do not have it worse than.......there is always a worse possibility. In tough times, that is the most difficult thing to see other than the light at the end of the tunnel. Ultimately, everyone involved is affected. But we cannot take away from what the actual patient goes through or (to stick to topic) what the soldier goes through while serving.
It changes us. Trauma, stress, anxiety, and instability changes a person. Time changes a person. Change is the only thing in this world we can expect to happen. The problem may lie in acceptance. I have heard stories of soldiers coming back and their families talking about how much they have changed. Even veterans are spoken about in that manner, "Well, before the war...." The chronically ill are very similar in the regard of these extreme emotions being dragged out over long periods of time. I hope with this information we can all start to look at each other with a little more acceptance, considering we have no idea what glasses the other person is looking through.
Ultimately, what I got out of all this is:
1) I have got to get the box I am sure my bible is in and get it out.
2) I want to find an accessible way for me to study the bible to gain a better understanding (it's the information junkie in me, craving anything).
3) I have to pick myself up, dust myself off, and push away the thoughts that I have such a hard life.
4) Remind myself how cushioned and comfy my life is with my husband and son and our little home.
5) Stop looking at negative emotions as negatives. They are our path to positivity.
Monday, March 18, 2013
Tuesday, March 12, 2013
Anyone got a flashlight?
I am just going to let this be a venting session. I have no agenda. No particular topic in mind that needs to be discussed or addressed. I just feel like I have completely lost myself in all that has gone on lately so I am doing a little soul searching or shall we call it "Lauren searching". I remember being a funny, naive, innocent, ambitious, tenacious, giving, loving, honest, and positive person. That girl is stuck inside of me somewhere.
I recently had the privilege of speaking with someone who does energy work. This is something similar to therapy, but also very different. It is about centering the mind and body. It's about balancing the energy in your body so that the positive energies can flow. Granted, I am no expert so that is my very basic explanation. Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself. For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do. But it did bring to my attention what things I may need to focus on to help balance me out.
You see, my health has been in turmoil for some time now. Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again. Right now, the most concerning issue is my digestion or lack thereof. At this point, I am scheduled to see a specialist at Johns Hopkins in May. I have been evaluated in Dallas for a gastric stimulator. In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely. In the meantime, I am living on protein shakes, eggs, toast, and bananas. I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth. I also allow myself one Zevia a day (an all natural diet soda). All the while, I am still in pain on a daily basis, if not just plain nauseated. I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.
In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake. I update my resume and apply for jobs as a psych nurse or a nutritionist. I go for bike rides with my son in the New Mexico sun. I make elaborate meals for my hard working husband. I shampoo my carpets. I give my dogs a bath. I do all these things with so much joy. Then, I wake up for a normal day, which should be joyful enough with the blessings I have. Instead it is tainted with pain, fear, anxiety, and desire for respite.
I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school. You always felt tired and dreaded school. Until you got up and got moving. The days turned out fine. This is the same thing. It is just a new normal. Be grateful for the joys and blessings." That's my intellect talking. That's my logic and rational brain. That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son? He cannot come home from school and see you like this. Not often. He needs to know there is meaning and joy in the world. If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm. This will not be his norm. He will lead a happy life with purpose and be grateful. You have to instill that in him." Unfortunately, the physical and emotional toll has run too high.
I can put on a good show. I get around town independently for the most part. I have responsibilities I take care of and follow through on. I go to church. I take a shower, do my make-up, style my hair, and brush my teeth. I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate. But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.
The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company. When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt. Needless to say, this made me a little anxious to get the process started.
I spoke with the doctor in Dallas today. I saw him three weeks ago. I called him last week because I had heard nothing, but he was still looking over things. I called him today. Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me. He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities. I appreciate and respect his time and attention to my delicate case. Most doctors panic at the thought of my chart.
After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever. She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out. When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?" She apologetically told me that he is still considering me a candidate and that's why he is still needing my information. He just wants to be sure he doesn't rock the boat with everything that is going on inside my body. She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious. I asked her to just let him know I am anxious to enjoy life with my seven year old.
And so I have no choice but to wait. Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment. I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials. I know that I am on a path to respite. I know that I am a fighter or I would not have made it this far. I know that there is meaning and purpose to life. I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries. I know I am blessed to have my in-laws near to help at the drop of a hat. I know that God has a plan and is carrying me through these trying times. The truth is, I don't feel like myself anymore.
I feel lost. I feel desperate. I feel deprived. I feel guilty for the burden it adds to my family. I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be. I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character). I am also angry that things aren't moving along faster. Did I wait too long to complain enough for someone to realize I was serious? I feel saddened by the fact that this has consumed me. I thought I was above that for some reason. I thought I could conquer anything and nothing could hold me down. This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.
I talk to my husband. I talk to my family members. I occasionally talk to a friend. You know, with every person there is something different you can share. With some you feel comfortable laying it all out there. With others it is more difficult to be open. I can honestly say I have not told one person everything. I have not been completely open with anyone. I don't feel like I can. It has gotten to this place of such despair that it is easier not to talk about it. Yet, it is consuming me. It is bringing me down and keeping me in this dark place. I decided a long time ago I would always pick myself up. I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?
I recently had the privilege of speaking with someone who does energy work. This is something similar to therapy, but also very different. It is about centering the mind and body. It's about balancing the energy in your body so that the positive energies can flow. Granted, I am no expert so that is my very basic explanation. Either way, the opportunity brought to my attention some things I hadn't realized about myself while also bringing to light or validating that which I did know about myself. For some reason, however, by the end of the call I did not feel a sense of relief or calm, as many say they do. But it did bring to my attention what things I may need to focus on to help balance me out.
You see, my health has been in turmoil for some time now. Each time we (my family and I) feel like we gain some ground, it seems to knock something else off and the cycle starts again. Right now, the most concerning issue is my digestion or lack thereof. At this point, I am scheduled to see a specialist at Johns Hopkins in May. I have been evaluated in Dallas for a gastric stimulator. In the small town where I live, my primary care physician sold her practice to a nurse practitioner (not quite up to par for my situation), but has assured me that she is only semi-retired and will follow my case closely. In the meantime, I am living on protein shakes, eggs, toast, and bananas. I force down a semi-normal meal for lunch for the pure sake of feeling and tasting the food in my mouth. I also allow myself one Zevia a day (an all natural diet soda). All the while, I am still in pain on a daily basis, if not just plain nauseated. I have to force my deprived body to exercise just to help move food along and to help maintain an appetite for the limited amount of food I do get to eat.
In my dreams I eat really unhealthy, hearty meals like cheeseburgers with fries and a chocolate milkshake. I update my resume and apply for jobs as a psych nurse or a nutritionist. I go for bike rides with my son in the New Mexico sun. I make elaborate meals for my hard working husband. I shampoo my carpets. I give my dogs a bath. I do all these things with so much joy. Then, I wake up for a normal day, which should be joyful enough with the blessings I have. Instead it is tainted with pain, fear, anxiety, and desire for respite.
I tell myself everyday, "Remember before you were this sick, as a child, you would hate getting up everyday for school. You always felt tired and dreaded school. Until you got up and got moving. The days turned out fine. This is the same thing. It is just a new normal. Be grateful for the joys and blessings." That's my intellect talking. That's my logic and rational brain. That same brain told me yesterday, as yesterday was the epitome of awful belly-wise, "What is this doing to your son? He cannot come home from school and see you like this. Not often. He needs to know there is meaning and joy in the world. If he sees his mother, a role-model, defeated and accepting defeat on the sofa with no makeup and a mess of hair, he will think this is the norm. This will not be his norm. He will lead a happy life with purpose and be grateful. You have to instill that in him." Unfortunately, the physical and emotional toll has run too high.
I can put on a good show. I get around town independently for the most part. I have responsibilities I take care of and follow through on. I go to church. I take a shower, do my make-up, style my hair, and brush my teeth. I cannot wear fitted clothing because of the pressure it adds to my belly so my thin frame is usually in something casual, but I try to keep it nice and age appropriate. But inside I am feeling like an out casted middle schooler who hasn't had a real meal or a good night's sleep in years.
The gastric stimulator is a possibility and seems to be my most viable option for better quality of life, but it is ultimately up to the doctors and insurance company. When I read reports about other patients who got them, I was astonished by how close their stories were to my own. I was actually elated because many of them spoke of waking up from the procedure craving their favorite foods. It takes time for your system to be able to handle those foods, but within hours of the procedure relief is often felt. Needless to say, this made me a little anxious to get the process started.
I spoke with the doctor in Dallas today. I saw him three weeks ago. I called him last week because I had heard nothing, but he was still looking over things. I called him today. Surely a third week has given him time to look it over, consult, etc. When I saw him he said he generally turns people away for these stimulators, but that does not seem to be the case for me. He kept all my medical records and said he needed some time to comb through them, to be thorough because my case is very complicated given the multiple comorbidities. I appreciate and respect his time and attention to my delicate case. Most doctors panic at the thought of my chart.
After relaying to the woman on the phone that I was curious about the status of my appointment because he still has my copies of my medical records and it has been three weeks with no news whatsoever. She politely (she is very nice, as is the doctor) explained that "your case is a very complicated one..." that's where I started to tune out. When she was done I simply said, "After three weeks I am still in the same position, if not worse than when I saw him, I would just like to know if this is even going to be a possibility for me or should I just bank on Johns Hopkins?" She apologetically told me that he is still considering me a candidate and that's why he is still needing my information. He just wants to be sure he doesn't rock the boat with everything that is going on inside my body. She said she would let the doctor know I would like my records back (mostly because he has my allergy list and it is too long for me to remember, possibly leading to my increased pain) and that I was anxious. I asked her to just let him know I am anxious to enjoy life with my seven year old.
And so I have no choice but to wait. Intellectually, logically, rationally I know that this doctor is doing his absolute best to insure I get the best treatment. I know that Johns Hopkins is an amazing facility and the specialist I am scheduled to see has some amazing credentials. I know that I am on a path to respite. I know that I am a fighter or I would not have made it this far. I know that there is meaning and purpose to life. I know that I am blessed to have my son, husband, a roof over our heads, clothes, and some little luxuries. I know I am blessed to have my in-laws near to help at the drop of a hat. I know that God has a plan and is carrying me through these trying times. The truth is, I don't feel like myself anymore.
I feel lost. I feel desperate. I feel deprived. I feel guilty for the burden it adds to my family. I feel guilty I cannot be the mother, friend, wife, daughter, sister that I once was and strive to be. I feel angry- if I hear one more time how "complicated" my case is, I swear I will slap someone (completely out of character). I am also angry that things aren't moving along faster. Did I wait too long to complain enough for someone to realize I was serious? I feel saddened by the fact that this has consumed me. I thought I was above that for some reason. I thought I could conquer anything and nothing could hold me down. This, this APS Type II, these multiple auto-immunities, this daily torture of lack of food or painful ingestion/digestion of food, this daily grind, this regimen, this has consumed me.
I talk to my husband. I talk to my family members. I occasionally talk to a friend. You know, with every person there is something different you can share. With some you feel comfortable laying it all out there. With others it is more difficult to be open. I can honestly say I have not told one person everything. I have not been completely open with anyone. I don't feel like I can. It has gotten to this place of such despair that it is easier not to talk about it. Yet, it is consuming me. It is bringing me down and keeping me in this dark place. I decided a long time ago I would always pick myself up. I promised myself I would never allow myself to go so far in to the dark I could not find my way out.
Anyone got a flashlight?
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