Healing comes at a cost

I am happy to say that my doctor’s appointment was incredibly productive yesterday. She has now confirmed that my joints are in fact swollen, and has prescribed pain cream to help while we figure out the cause and address my gut inflammation. To address my gut inflammation I will be starting the GAPs diet, though my doctor has instructed me to stick on the bone broth phase for 2 whole weeks given the state of my health. Along side the dietary change she has me lined up for a slew of blood tests to see where I have imbalances still, and to have a baseline for necessary supplements. 

Though the appointment went quite well, I am having a hard time mentally preparing myself for the GAPs introduction phases. Bone broth for two weeks while everyone else in the house enjoys delicious full meals is one thing, adding an egg yolk and probiotic juices to the broth for the following week? That is nauseating to think about. I will certainly be relying on God for this one and offering up my sufferings, I’m not sure how I will manage it otherwise. I know that the healing this diet will begin is going to greatly outweigh the sacrifice, yet there is still a stumbling block that I need to overcome. I don’t much like sauerkraut (even home made), I don’t like goat yoghurt (I’m allergic to cows dairy), and I don’t like the flavor of most fermented food except kimchi. Still, I will have to rely on adding these into my diet everyday. I hate the texture of runny egg yolk if it is not soaked up by gluten free bread, but I will have to put that in the broth. I have to give up cold water and switch to room temperature water to help soothe inflammation. I have to mentally accept that the benefits of these changes are all much more important than the discomfort and mental suffering I will endure in eating them. I have to accept that healing comes at the cost of pleasure food for now, and that I need to go through this to get better. 

Thankfully fats are an important part of the GAPs diets, and later on I can look forward to decadent things zucchini pancakes fried in duck fat. When my options start increasing, I will be able to be creative and fun with my food again. Until then, there is not much that can be done to keep bone broth fun… Especially when it has sauerkraut juice and egg yolks in it…

Are you sure it isn’t psychosomatic?

I will be the first to admit that it makes me unreasonably angry and hurt when anyone believes that my medical conditions are phsycosomatic. I feel a sense of riteous indignation that the blood tests, X-rays, glucose tolerance test, MRI and gastroendoscopy I had to endure to find out what is going on in my body are not proof enough for someone to believe that I am suffering because I don’t “look sick”. The idea that I have celiac disease because I want it or because I’m so stressed that my brain is giving me stomach aches leaves me enraged. That I have fibromyalgia because I am stressed emotionally stings like you would not believe.

Yes, psychosomatic manifestations of anxiety and depression are real and horrible experiences for an individual to go through. I don’t go through those. I have diagnosed, measurable chemical imbalances and deficiencies. I didn’t have a blood test every month for 7 months to show that my progesterone was always low because I am stressed. I had the blood tests because I’ve had an irregular period since I was 15 and had a miscarriage last year. I didn’t have a GI shove a scope down my throat while I was under general anesthetics because I was stressed and jumping on the gluten-free band wagon. I had the scope after my blood test for celiac antibodies came back at 87%. Normal range is below 10%. I don’t take a medicine cabinet full of supplements for fun. I take them because I was diagnosed with deficiencies and need them. I wasn’t diagnosed with fibromyalgia because I’m stressed, I was diagnosed because I exhibit all of the symptoms and have been for 10 years. I know that the damage from celiac disease is a huge contributing factor toward the development of FMS, they are comordbid if not causative.

I don’t have a restrictive diet because I want to. I have it because I have to. I cut out sugar because I would rather cut it out than be on medicine to prevent diabetes after I was diagnosed with insulin resistance. Sugar imbalances also trigger migraines. I had an MRI. I did the glucose tolerance test. It sucked. I cut out gluten and oats because I have to or else my immune system will continue to attack my small intestine. I cut out cows dairy because I cannot digest lactose and have hystemine reactions to something (likely casein) where I get migraines and systemic reactions (also known as anaphylaxis). I cut out legumes because I cannot digest them thanks to the damage to my small intestine. Whether I like the flavor or not does not matter. All of these foods are measurably dangerous to my body. 
Stress acts a a catalyst and worsens FMS. It also worsens IBS. It also triggers migraines. Does stress cause my symptoms? No, but it is a very effective catalyst. It releases hormones that really mess up the already screwed up chemical balance in my body.

That is my angry little rebuttle to the idea of it being psychosomatic. I am not angry because I don’t like being judged or questioned. I’m not angry because it is wrong of someone to ask. I’m not angry because I think everyone should be able to just accept that what is wrong with me is invisible. I am angry because the only reason that my invisible illness became so bad was due to not being taken seriously until it was too late. Every person that jumps to that perfectly natural skepticism unknowingly sticks a dagger into the very root of why I got so bad in the first place. Don’t get me wrong, skepticism is necessary when dealing with anything, especially with so many self diagnosing tools floating all over the Internet. The key is to use skepticism reasonably and be aware that your skepticism is very likely going to hit a nerve with people like me. My anger stems purely from the very hard experience of ever worsening health and having to change to a different doctor to have anything taken seriously. It is the feeling injustice that my suffering isn’t enough to remind me that I was caught too late. Without knowing it, every person that asks me if it is psychosomatic reminds me of how unfair and crappy an outcome I get to live with. I am 24, I already do not get to have a normal experience of early adult life, and you’ve reminded me of my completely unnecessary life sentence.

I don’t need you to believe that I am suffering for me to feel the pain I go through. I will go through it regardless of your knowledge, acceptance or belief. Your opinion of my invisible illness has no power to change it for better or for worse. If you don’t take me at face value, how I react will depend on your role in my life. If I barely know you, it won’t matter. If you are a friend or family, it will hurt quite deeply. Not because you shouldn’t be a skeptic, but because it shows just how little you trust me. By asking, you are stating that you do not believe that I have really seen the doctors, or conversely that you know better than my doctors. 

Those who experience chronic illness do not want it. Yes, there are many of us that want to get better but self sabotage. There are others that haven’t come to a point where they can really try to change. There are also those who do everything they can. No matter what, the suffering is real, the emotional impact is horrible and finding an improvement in quality of life is an incredibly hard and arduous commitment. The illness is real and so are the obstacles to getting better. I personally try my best to really make a difference and move forward, I can’t always, but I try. I am severely hindered by my GI track, because I still have absorption problems. I don’t know what is happening to my joints and the balance I was starting to achieve has all but shattered after getting sick then having a celiac reaction.

So please, before you issue out your daily dose of skepticism, be considerate and realize that skepticism is meant to find out the truth of things. If the truth is that it is not psychosomatic, take it as it is. Accept it. Your skepticism won’t change anything but your relationship with whoever it is you refuse to believe. 

Feeling more than a little hopeless

I wish more than anything to no longer be sick. I wish my body would stop attacking itself. I wish that I could stop suffering. I wish that the efforts I make would yield greater differences. I wish it didn’t feel like I was fighting a losing battle. 

Those are the words that pass through my head as my belly feels like a fire is raging, my joints lock and my body hurdles along through a celiac reaction. I’ve been careful, paranoid even. Yet, exposure happened. Inside my soul is screaming at how unfair it is, how painful it is. I’ve had stomach problems since I was very young (due to celiac disease) and have had fibromyalgia symptoms for the last 10 years. I have been strict with my diet, have tried various medications, have been trying various lifestyle changes to promote healing. Eating very healthy, exercising the amount I can handle, taking supplements, regulating my sleep… But still I suffer. Still, my immune system remains horribly over sensitive. My digestive track doesn’t seem to be healing. My joints are only getting worse. I’m 24, soon to be 25. I have no idea what I’m doing wrong or why I’m not improving. I’m actually make huge efforts, I have never just sat in my illness and “tried to get better” for the attention. I know that I do not always do everything right, I mess up my sleep easily for instance, but I do make a pointed effort. 

I don’t feel like I have the strength to keep pushing through all of this, but I don’t know what else to do. I see my doctor in two weeks, and I know I will be able to ask her to look into more, but it is beginning to feel hopeless. I don’t know how anything will work out. I will continue my efforts and keep searching for ways to improve my quality of life.. I just wish that I could find something. I don’t need a cure all. I just need hope that things can get better, and a path to follow to get me there. I don’t see a path right now… Especially with how little the large efforts I have made have helped… I don’t know what to do.

Steps forward

Steps forward are sometimes small, something large and sometimes seem like steps in the wrong direction. I think the reason that it can feel as though the steps are going backwards is because there is only a dead end ahead. Instead of staying at the dead end, the path opens up a little ways behind, leading forward once again. 

Right now we are moving backwards down the path that will hopefully lead us to a better way forward. Though the position my husband took yesterday does not offer a larger salary, but it does offer a significantly larger opportunity for advancement. We are staying with family to save up money, so although we are sacrificing our independence, we are working toward a foundation for a better future without debt. I feel like we are working to go forward, but I am not certain where that will lead us. Right now I don’t believe I need to know what the future holds, I simply have to trust that it will turn out as it is meant to. 

Relying on God

There is very little that is quite as stressful as not having an income in time for bills. If I did not have God to rely on, I would likely be an unimaginable mess. Truthfully, like everyone I do have a hard time trusting that there is something good being lined up if we just listen and follow. Today I had quite a bit of reassurance from God.

We have been trying very hard to get my husband working since the move, what was supposed to be a simple transfer from one regional location to another has turned into a very long process. Since we cannot be certain when he will be able to work his old post again, he decided to start applying elsewhere. His field of expertise is security, and in time the plan is to become a police officer with either the military police or the Ottawa police. We had been hoping that his transfer would go through sooner, and not be so pressed for money. As can be expected, I have been rather stressed not being able to see what God had in the works and not allowing myself to fall into simple trust. My worry is being replaced with a humble sense of peace because my husband has an interview tomorrow for a position that he had only applied for yesterday. What’s more? It is a position that pays considerably more than the post he was going to return to, has significantly more training opportunities and works directly with the police.With eight years of security experience and two years of military experience, he is a shoe in for the job; and in my books it is looking like God set us up for a better experience.

One thing that I am starting to realize is that every change in life is always accompanied with growing pains of one kind or another. It is hard to see past these growing pains, but in reality they end up being a simple short term sacrifice in order to set up a long term improvement. It is hard to push past that barrier of wanting control of everything in life, but even when things seem to be falling apart, if we listen to the Big Guy everything starts to line up again.

 

Finally set up

It has taken a bit of time, but I have finally been able to set up my work space. With a working computer, an online tutoring job and our printer out of storage I am ready to get back into the swing of things.

The current plan for tackling my novel is to write up chapter summaries, print those out and go over the story progression as a whole before editing the individual chapters themselves. As I break down the story progression, I will be able to ensure a smooth continuity as I tweak various aspects along the way. That is the plan for now, and barring any technical malfunctions it should be fairly simple to follow.

Book is on hold

Unfortunately, my novel is on hold until I have a work space and the ability to print off sections at a time in order to edit properly. I am hoping that I will be able get back into the editing process soon. I finally have a better idea of how I am going to incorporate the information that was missing. 

I have decided that rather than using any cultural myths, I will do my best to create a stand alone universe for the story. Thus far I was asking the universe heavily on Norse mythology, but with the uprise in myth based fiction, I would rather create a more unique experience for my readers. There will likely still be overlaps, but this way I will have more freedom with my story. I am going to use the time it takes to set up my work space to get a better overview of those changes to my story. 

Setting up a workspace

The last two weeks have been a bit of a blur. I have been productive, though as always that productivity comes at a cost. My husband and I have finally found a good working layout for our bedroom, and have begun creating a suitable work space. I have been hired for online tutoring, so if I combine that with writing I should be able to do some decent work from home. Other than a few electronics that were accidentally put in storage, we are just missing a desk and chair to fit the space. I am hoping that this new layout will bring with it a sense of peace of mind. I am feeling much less clostrophic thankfully. Theoretically setting up a new routine will do some good. 

In this whole process I have found myself better able to identify when I am reaching my upper limit. I am in more pain than I would like to be, but at the very least I am getting quite a lot done in a day moored to before. I am hoping that when we have everything set up I will continue this level of exercise but targeting specific muscle groups. The impact of muscle strength on joints is huge, so if I can find some joint pain relief I will try it. Hopefully all of my efforts will bear fruit. 

A few thoughts about fibro flares

Most people who do not have fibromyalgia have no idea what this syndrome is, and I would venture to say that even those who know about it cannot truly know it. That isn’t to say that people cannot have a deep understanding of the syndrome, I personally believe there are simply things that those who do not go through cannot know. The same goes for any serious medical condition. The aspect that I personally find the most frustrating and difficult is the impact this syndrome has both psychologically and on social gatherings. During a flare it is almost impossible for me to muster up the energy to pretend that I am alright. I try my best, but it leaves me in more pain and exhaustion.

My flares sound like the biggest exaggeration when I describe them, even when I choose to omit details. I become more paranoid about the possibiliy of having a celiac reaction because that is the last thing I want during a flare. I avoid physical contact with people because even a gust of wind will set my skin burning. My stomach revolts and becomes uncomfortable, which leads to the onset of anxiety. I feel guilty to say that I cannot participate because it looks like I am either flaky or just seeking attention. I get pitied or leave people annoyed for not being able to participate and I am left screaming on the inside. All I want to do is leave. Leave the extra pain, leave the looks of pity or annoyance. I want to scream because I feel trapped and helpless. 

During flares especially, it seems as though people wonder if I am trying at all to get better. You bet I am. It may not be what you think I should be doing, but I am trying hard. I have ridiculously restrictive but healthy food intake because of celiac disease, allergies, insulin resistance and intolerances that the damage from celiac caused. I eat a cocktail of supplements hoping they will give my body what it is missing. I try hard to get control of my sleep patterns. I try to keep up with chores and exercise, but I tend to overdo it too often and relapse in more pain. All this while feeling as though I have no dignity because I have a syndrome that is brushed off to the side and not taken seriously. People don’t believe that it can be so bad while I still keep trying. There is this idea that if you are making an effort, then you can’t be that sick. Meanwhile, if you don’t make efforts you are lazy and seeking attention. 

The hardest thing is to live with other people. I cannot always help and do my normal chores. I can’t always be cheery and social. I can go from ok to horrible pain very easily. Unfortunately, I get uncontrollably irritable when my pain gets bad. I don’t say that as an excuse for being short tempered, merely a statement of a fact. My usual coping method is to avoid contact with people. I space out and can’t hold a conversation, which can come off as me being rude and not caring. Excitement can actually cause pain flares, so it is hard to try and celebrate. The longer I live with it, the more difficult it is to hold onto hope. Especially when the underlying causes of the syndrome are so difficult to test let alone treat. Every aspect of it is exhausting in ways that I doubt I could ever accurately describe.

There isn’t a day that goes by where I don’t want to be sick. I think that’s the part hat people forget first. Even though I don’t seem to be getting better very quickly, or that my reasons for not being social are always the same, this is not what I want my life to be. I spend a huge amount of my time researching the articles on pubmed to try and find some lifestyle change or other that helps. I try to learn the mechanisms in my body, how they interact. If I do that, maybe I can do more than I am and actually start feeling better…

Moving is never easy

I am exhausted. I am not sure that I could describe myself in any other words.  Physically, emotionally, intellectually and spiritually exhausted. I have been having a hard time answering whether or not I’m happy and I have realized that it is because I am too tired to tell. I’m drained from the stress of the quick move. I’m drained from the physical needs of the move and setting up a useable space that will not give me panic attacks to look at. I’m drained from the emotions of leaving the friends I have left behind. It is not the first time I have been this utterly tired, and I doubt it will be the last. It is hard to describe the physical pain I am in as well. I absolutely wish I could fix my nervous system, yet even suffering this I am too tired to cry from pain. I can’t cuddle my husband or even enjoy an affirmative touch of any kind without searing pain. Sleep doesn’t help either. I have barely had energy for the last 10 years, yet it feels as though I have even less right now. I have officially moved 4 times in the last year, twice between cities. I am exhausted from moving. Unfortunately, this is the most I can offer as a blog post today. If I were up for more, I would send something more thought provoking. Thank you for bearing with my complaints.