Over the past several years this giant snowball has seeemed to engulf my life. More recently, particularly the past year or so, this snowball has begun to overpower me. I've brushed it off, pushed it under the rug, beaten it down, ignored it, and tried to look at everyday as a new chance to shake it off for good. To my own dismay, nothing has helped. So now, I turn to you, oh powerful blog..........to air it all out and hope the release will spark change.
I wouldn't normally "air my dirty laundry" for the whole world to see. I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss. I don't have enough money for a therapist. A journal is a good outlet and much cheaper. A blog is somewhat of a combination. Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.
I have been to therapists in the past. I have always been told I have good coping skills. I went to school for psychology and was stopped short 11 months before completing my bachelors. (That is a goal I intend to keep and complete when I am able!) I know a little about how the brain and emotions work. Very little; nonetheless, I have a background.
I am a stay at home mom and so I have plenty of time for introspection. I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo. For a while, literally up until today, I thought I suffered from anxiety and depression. I have been on medications for this in the past, but I prefer not to take medication. It was first brought to my attention in my mid teens. I mentioned to a professional that fights, whether physical or verbal, terrify me and always have. I do not have to be involved in the fight. It doesn't even have to have anything to do with me. The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode. That opened a can of worms that could never be contained. I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.
As the years passed, I saw several different doctors and therapists and went on and off several different treatments. Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed). The things that would terrify me then no longer terrify me, but I have a whole new set of worries. I never liked the medication. It would take away my symptoms, but it would also numb me out completely. I couldn't feel the good feelings or the bad feelings. I was usually the one who initiated the termination of treatment time and time again.
Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance. Many symptoms have been explained away or treated as each disease has been diagnosed. Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear. If a major life change is caused by the diagnosis, it can also lead to depression. As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.
I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process. Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life. Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort. The last 4 years has been me meandering in and out of depressed states. I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not. I do not want to take away from or discredit the real sufferers of clinical depression. Just like diabetes or lupus, it is a real medical condition with some serious complications. Clinical depression just does not seem to fit the bill for me.
I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication. Most anxiety medications are also anti-depressants. When a doctor hears I am having a hard time, their first thought is an anti-depressant. I hate these medications. I will do anything and everything I can to avoid them. The truth is that it is hard. All of it is hard. Life is hard in general, but add these diseases on top and this juggling act becomes incredible. Who in the world could deal with it all without ever feeling overwhelmed?! My guess is, not a single soul. Does that make me weak or "imbalanced" just because I am having a natural reaction? While it is a negative reaction, it is still a natural response. My thinking is, that is healthy. It would be of concern if I floated through these trials without so much as a grimace. So why the need for "help" with these medications? Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.
I was out for my morning walk this morning and it hit me like a ton of bricks. It is not depression per se' that is making me feel this way or that I need help with; it is anxiety. I have been explaining to my husband recently that the world is beginning to frighten me. Every where I turn there is a danger or a contaminate or a risk for myself. Every step I take, every move I make, a complication could occur. This is starting to affect my daily life.
Let's go into this a little deeper, if you will. When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached. No fear necessary. As I have said before, my own father passed away from complications at the young age of 35. That has never left my mind. Then I was diagnosed with interstitial cystitis. I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each. Sleep, stress, excitement, sex, infection, exercise, etc. affected each. After a few years, I fell into a grove. It didn't stop there, though.
I never felt well. I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son. Then, the seizures started and progressed steadily. I was finally sent to the Mayo Clinic. That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25. The seizures were treated, but no other explanation found for all my symptoms. I was sent home knowing my journey was not anywhere near being over. Gradually, we started getting answers.
Celiac disease. That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home. Initially, this terrified me and infuriated me, but I read a lot of books. I educated myself as much as possible to make this change as easy as possible. The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors. Imagine digesting broken glass. It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc. Any uncomfortable stomach upset symptom, I get it. I sometimes even get headaches and joint pains along with all of that. When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter".
Undifferentiated Connective Tissue Disease. So much of the treatment for this disease has to do with reducing inflammation. To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs). Steroids raise your blood sugar to dangerous levels. Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare. NSAID's are rough on your stomach. Not only that, they thin your blood so they are dangerous for people with ulcers. Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease. It can cause internal bleeding. Our only option was an anti-malaria drug. I do not know the science behind how it works, but somehow it does. In the rare case I suffer a flare up, I dread the steroids necessary. In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's. My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses. All of which seems like a ticking time bomb to me.
In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years. Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis. I was literally not digesting food or absorbing it. I spent the majority of my time for many months in bed, in pain, and very weak. Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis. In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption. My stomach produces no acid which is as bad as having too much acid. This causes messages to get lost so my pancreas does not produce digestive enzymes. The undigested or imporperly digested food then tears up my colon. There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated. As you can imagine, this adds a whole other level to the Jenga game we have going on here.
Food is a source of contention for me. I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity! Due to the Celiac disease and the diabetes my options are pretty limited. Add to that the digestive issues and we have to cut out even more. Proteins and fats are the hardest things to process and fiber is too bulky. I am limited to soft foods that are easy to digest, often liquids. I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need. Almost like getting gastric bypass without the gastric bypass. Plus, I had to stop running because it was too much for my body and my digestive system. I turned to alternating walking my dogs and yoga. Running was my passion. And still, it didn't stop there.
I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description. At this point everything but the seizures were being caused by an autoimmune response. Plus, I had the rare disseminated histoplasmosis infection in 2009. The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history. He also discovered several allergies. Everything from cats, mold, and pecan to grass, mulberry trees, and cedar. They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen. I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.
At that point, I started feeling like the girl in the bubble. It was explained to me that as long as my immune system is in attack mode, it will continue to do just that. It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II. By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years.
Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation. I had my own set of personal mishaps over the summer and into this fall. These more recent neurological episodes are our new mystery to solve. As I wait for these appointments to come and wonder what the outcome will be. I wonder if we will get any answers or just more questions. I wonder if relief for my headaches and disorientation will come soon.
Last week I was washing dishes and a glass began to fall. I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough. I ended up tearing up my ring finger on my left hand. I had to go get it treated at the Emergency Room. I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut. Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing. A week later I still am unable to get the finger wet or use it. I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them. It would just be cruel to take one and not the other. Of course, I cannot do yoga. It's amazing how much you use that one finger. The week has been a little rough. Not to mention how badly it hurts.
So, as I was walking this morning, irritated because I wanted to take my dogs. Irritated because I'd rather do yoga since I have been deprived of it for a week now. Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on. I was starting to beat myself up over being depressed when I realized, it is not depression at all. I have the mindset to walk myself out of that hole. I have the mindset to see the positive in all the negative. That's not the mind of a depressed person. Often, clinically depress can not even fathom positive thoughts. They do not see a light at the end of a tunnel or any hope. The anxiety of my fears is crippling me. As that thought came into my head, I started to examine recent events and my reaction to them. I started to notice just how badly the anxiety may be affecting me.
I am low on energy as it is. I prefer to utilize the energy I have for my son and husband. They are my priorities and therefore they deserve my best. My second priority is exercise. Without exercise, digestion, stress, and energy would be huge concerns. Exercise gives me more energy. It loosens my joints and muscles with lubrication and blood flow. It allows me this time to myself to just be me, and that is a huge stress reliever. Without exercise, it seems as if nothing moves inside my belly. Of course, exercise stabilizes blood sugar. All other energy just trickles down. If I have enough energy for fun with friends or family, I'll take advantage. Usually, the latter is what suffers the most.
I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun. I have declined invitations by friends for many things. Partly and mostly due to the fact that I do not feel well enough to get out and do something. Many times it is because I am just zapped completely of energy. While thinking back, I think anxiety has a lot to do with my lower than normal energy lately. I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible.
Spontaneity is not in my vocabulary currently. I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible. If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something. Believe it or not I have been contaminated many times from just ordering a fountain drink. These restaurants are full of contaminating foods. Most packaged food has some sort of preservative or chemical or gluten that I cannot eat. My diet consists mostly all natural, whole foods. That's hard to get on the go. I need to be close to my insulin and testing supplies as well as my emergency medical devices. Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times.
The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings. I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit. I am already a bit of an introvert. I have always been a bit of a worrier so I guess that would classified as anxious. Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen.
I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this? I do not have money for a therapist nor have I ever felt like they help. I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis. I do not want to burden friends and family with these thoughts. They run through my head continuously. If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying. We all have things to worry about. What makes me different? Different worries, of course, but my worries are no more important than the rest I would assume. How do I tell myself to have faith in God's plan and stop sweating the mall stuff? How do I tell my heart to listen to my head?
And with that, I end this. It is long enough to begin with, but really how much deeper can we get into worrying and anxiety? All the worrying in the world never fixed any crisis. Worrying has never solved any problem. Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.
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