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?
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