Not sure if I am in limbo or free falling
This post is part of an ongoing series chronicling my battle with abdominal adhesions.
I haven’t updated this series for almost a month for a couple of reasons. The first is that I haven’t had any doctor appointments and won’t have another until next week. With every surgeon I meet refusing to help I have decided to change my course of action. As advised by each one, I am scheduling a consultation appointment with pain management. How long I will have to wait for that appointment remains to be seen as I first need to attend an orientation class. After this class (next week) I will be able to schedule my consultation and see if they there is anything that they can do for me without prescribing medication. I also have an appointment with my primary physician this month in order to have my condition related weight loss recorded in my files along with my continual symptom complaints. I want on record that I am following each specialists instructions regarding diet etc. and yet have not experienced any relief from abdominal pain. The only advice I am not following is their insistence that I take pharmaceutical pain medication. I refuse to return to the zombie I was back when pharmaceutical pain meds were my only option. Those meds almost destroyed my life, I couldn’t think, concentrate, or function. I would not be writing or blogging today had I not switched to medical marijuana.
Another reason that I haven’t updated this series is that I am exhausted. My energy level continues to plummet. Each week I think this can’t get worse and that I will be on the upswing next week. Then surprise, next week is no better; in fact often it’s worse. The simple task of making my bed requires a nap. This is ridiculous as I am not a perfectionist when it comes to bed making; I just throw my sheet and blankets on the bed and attempt to straighten them. There’s no tucking of corners or arranging decorative pillows. The only way to make a bed easier than I do is to not make it at all. I experience some sort of abdominal pain every day. I either experience one of the following, a combination of, or all at once: Intense ripping, stomach and intestinal bloating, swelling, and soreness, nausea, vomiting, diarrhea, or the sensation of feeling like my stomach and/or intestines are filled with razor sharp blades. These symptoms alone are enough to exhaust a person, but to add insult to injury not being able to digest an acceptable amount of calories each day has also contributed to my weakened state. Most days the most I can ingest without increasing my pain level is equivalent to one juice based produce filled smoothie with oatmeal sprinkled throughout and one cup of whatever gluten-free pasta casserole I have in the fridge. For the most part I have no appetite or desire to eat and when I do I feel like a stuffed turkey just after a few bites. Occasionally I am blessed with a desire to eat. There are times when this window of opportunity only lasts a few hours or it could last for as long as five days. On those days I am able to more than the other days. I both look forward to and dread the days that I desire to eat and can actually recognize that I am hungry. I look forward to them because I know that I need to eat. They are dreaded because even when I follow my physician’s dietary guidelines I continue to experience an increase of all the symptoms listed above. Because of this I am finding that I am developing an unhealthy fear of food. But can you really blame me? Would you want to eat if everything you put in your mouth caused your abdomen to hurt so bad that you can’t stand or walk? What if you experienced diarrhea so violent that you feel like you were going to pass out after every meal?
I have also put off updating this series because I am struggling to accept my current state. As much as I want to believe that there is hope to regain even the slightest bit of my previous energy level, I am beginning to think that this may really be as good as it gets. My body has given me no reason to believe it is anywhere near ready to begin healing from whatever is going on. I feel like I have been pushed from an airplane and am falling without a parachute. For me that parachute represents a known cause for what is going on inside my abdomen. While my doctors and I are assuming that adhesions are the cause, we don’t have proof. This assumption is based on my history with adhesions and negative GI tests. Maybe adhesions are the sole culprit, but what if they aren’t? I have had spells like this ever since I developed abdominal adhesions, but they have never lasted this long. Nor did they worsen; instead they would strike hard then within a few weeks I would experience a sharp ripping which would return me to my normal state of pain. I am nearing a full year since this spell began and I have only gotten worse. While I am trying not to put my life on hold, I am also struggling to live. The amount of time I spend out of the house has decreased greatly. If I am lucky I can drive myself to the grocery store once
a month. Most of the time I have to rely on my husband and friends to drive me around. My independence is decreasing. It sucks. I am emotionally all over the place. One moment I am laughing and soaking up every wonderful moment that God has gifted me with. Then the next tears trickle down my face I fear of not knowing what is going on inside or wonder how much more damage has to be done before a physician will help me. Or I may start sobbing because one doctor after the next has said that there is nothing they can do. What if they are right? As quickly as the tears fall, they disappear and I find comfort in knowing that at least for now I can wipe my own bum, shower without assistance, write, and am not confined to my bed all the time.
Lastly, finding my groove has proven challenging. I am sleeping more than usual and have less energy to be as productive as I was before during the hours that I am awake. Because of this, the last thing I have wanted to do was write about the very thing that has upset my schedule. What I really desire right now is for whatever is going on inside of my belly to stabilize in order to allow me to fall back into some sort of schedule. In hopes to loosen the hold that adhesions possibly have on my bowels, my husband and I have scheduled a couple of 2 day Disneyland visits this month. Wondering how I can be as sick as I describe, yet can handle going to Disneyland? It’s quite simple actually. My husband drives, I medicate for pain all day, my husband and daughter push my wheelchair so I don’t have to concentrate on where I am going, nor am I forced to converse with anyone, including my family. It’s the ultimate outing. I get to go to my favorite place without worrying about speaking in fragments or having to mentally or verbally piece together sentences or make sense of what others are saying in order to have a conversation. I can spend a day at Disneyland and speak to no one outside of those who accompanied me. No matter how much or little I speak with my family or friends in the park, we all leave with a brain filled with magical memories from going on rides and watching various shows. If I get tired I take a nap in my wheelchair while waiting in line. I know it sounds absolutely crazy as most people who suffer from a chronic condition think of Disney as a stressful vacation, but for me it is one of the most relaxing and therapeutic experiences.
Anyways, you are now up to date on what’s been going on. My husband and I are grateful to have friends that have offered to help. One sweetheart in particular has been coming by and tackling some household cleaning that has been neglected for way too long. Some are also volunteering to bring an occasional meal by. I pray that this is temporary and that life can return to some sort of normalcy soon.
Wishing you a day filled with many reasons to smile,
The Disabled Diva