Life as Amber knows it

"An adventure in the making…"

Daily Archives: March 16, 2016

My Painful Reality

I’m fairly open about most parts of my life. To date, I’ve written about surviving a physically and emotionally abusive adoptive mother, a first marriage that was an exercise is abuse and shame and having my self worth stripped away daily. I’ve written about my struggles with infertility, post partum depression and anxiety, the decision to have a hysterectomy at the young age of thirty-three. I’ve written about being adopted and my search for my biological mother. I’ve written about losing my father, about my loss of faith and finding it again. I’ve written about body image issues and the struggle to lose weight (I even went as far as to post before and after photos of me in a bikini). And while I’ve hinted at other things going on in my life, I haven’t been open about them.

I have Fibromyalgia and Rheumatoid Arthritis. Every single day of my life is spent in physical pain.

If you’re not familiar, the symptoms of Fibromyalgia include the following (I’m quoting the fabulous WebMd for these):

“Chronic muscle pain, muscle spasms, or tightness. Moderate or severe fatigue and decreased energy. Insomnia or waking up feeling just as tired as when you went to sleep.

Stiffness upon waking or after staying in one position for too long. Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”). Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome). Tension or migraine headaches. Jaw and facial tenderness

Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold. Feeling anxious or depressed. Numbness or tingling in the face, arms, hands, legs, or feet. Increase in urinary urgency or frequency (irritable bladder).

Reduced tolerance for exercise and muscle pain after exercise. A feeling of swelling (without actual swelling) in the hands and feet. Fibromyalgia symptoms may intensify depending on the time of day — morning, late afternoon, and evening tend to be the worst times. Symptoms may also get worse with fatigue, tension, inactivity, changes in the weather, cold or drafty conditions, overexertion, hormonal fluctuations (such as just before your period or during menopause), stress, depression, or other emotional factors.”

And if you’re not familiar, here’s a break down of Rheumatoid Arthritis (again, quoting WebMD):

“Rheumatoid arthritis is the second most common type of arthritis.

RA often affects the wrists, hands, knees, ankles, and feet. Usually, it’s the same joint on both sides of the body. It can also cause problems with other organs like the eyes, skin, heart, lungs, kidneys, nervous system, and digestive tract.

When you have RA, your immune system attacks your body, especially your joints, by mistake. It’s called an auto-immune disorder.

Here’s how it happens. The white blood cells of the immune system move into the joint. They release chemicals called cytokines, which attack the lining of the joint, called the synovial membrane. Thick tissue called pannus growsinside the joint.

Over time, that tissue invades and destroys cartilage and bone inside the joint. Inflammation causes fluid buildup in the joint, making it swell. Eventually, the damage makes it hard to move the joint.

RA is a lifelong disease. But there are many treatments that relieve pain and stiffness, and also slow down or stop the damage to your joints.”

I haven’t said much about it publicly. For the simple reason that I don’t want to be thought of as sick. And people mean well, but having been through multiple illnesses in my life, once you say it, once you’re open about it, you have a label placed on you.

I was diagnosed with Fibromyalgia six years ago after I fell on the stairs and cracked three ribs. The ribs healed. But four months after the injury, I was still feeling pain, and it wasn’t pain related to the injury itself. It was pain that radiated throughout my body, or would be in one area of my body with no reason for it to be there. After several doctors and several out of pocket payments, I finally got a diagnosis. I was diagnosed with Rheumatoid Arthritis four years ago when I began having trouble closing my hands around various objects. I was unable to make a fist without having pain throb through my hands for hours after.

The first medical treatment for Fibromyalgia is a prescription of Lyrica, which is basically an anti depressant. At the time of my diagnosis, I was taking Zoloft to treat post partum depression, and the Zoloft had the same effect Lyrica would on a person: it seemed to help the pain I was feeling from the Fibromyalgia.

Six months after the first diagnosis, I found out I was pregnant with my son. It was never a question: I stopped taking the Zoloft, no way was I going to have medication coursing through my body and into that of my unborn child’s. And I suffered for it greatly. Daily, I was more exhausted than I’d been when pregnant with either of my daughters. Daily, my body ached. Do you know that feeling you get when your foot falls asleep and starts waking back up? Those pins and needles that stab into your waking muscles and make it almost impossible to take a step? On my worst days, I’d feel that all over my body, so much so clothing hurt my skin.

I resumed taking an anti depressant after my son was born, and added a second one into the mix after my hysterectomy brought on a similar type of anxiety and depression that I suffered through post partum. I stopped taking the medications when they began doing more harm than good: I gained one hundred pounds and my hair began falling out. And I was fine, for the most part, in terms of emotional health. And the weight loss I had after ditching the pills helped with the depression. I’d also began a healthier diet, and that plus exercise helped alleviate the pain I felt from both illnesses.

But life seems to like to kick me in the crotch. Due to personal issues (which I will not for various reasons talk about here), I began taking Zoloft again in August 2013. I made it eight days before being rushed to the emergency room and being treated for seratonin syndrome, a possible side effect of taking any type of anti depressant.

My life became a cycle of depression, trying a new anti depressant, and around the one week mark, a trip to the ER because my body was no longer reacting to anti depressants and I’d start going into seratonin syndrome.

Name an anti-depressant, I’ve tried it: Prozac, Wellbutrin, Zoloft, Paxil, Celexa, Lexapro, Lyrica. With exception to Prozac (with my second dose I became suicidal), every other medication? Say hello seratonin syndrome and brushing up against death.

The reality is, I’m limited in treatment options, both for my depression and my Fibromyalgia and Rheumatoid Arthritis.

And my body is declining. Unfortunately, 10% of that is my own dumbass fault. You see, the past two years? It’s been rough. I lost my father. I lost family members. Several people I love dearly are fighting to live due to various health issues (and out of respect for them, I’m not naming names). I’ve had other emotional upheavals. And sadly, I went the route of eating shit that’s not too good for me.

But that other 90%? That’s on my body, and I can’t change it. I can go the homeopathic path, and that helps somewhat. But there are still days where it’s all I can do to get up out of bed and throw together peanut butter and jelly sandwiches for my kiddos for lunch before I’m so wiped out I have to sit down and not move for a couple of hours to recover.

Having these two illnesses is very isolating. Because I have a hard time asking for help. And I loathe repeating myself. And they don’t get the focus that Cancer or Heart Disease or even Diabetes gets, primarily because they aren’t deadly. I won’t die from either of these illnesses. But that doesn’t mean I’m not ill. That doesn’t mean that I don’t hurt, both physically and emotionally, that doesn’t mean I’m not frustrated, that doesn’t mean that I’m not angry and devastated and heartbroken and feeling betrayed by my body. Because autoimmune disorders can be summarized into a simple statement: it’s your body attacking you.

For me, something that’s hurtful is that the people who know I have these illnesses forget that I’m sick. I can’t remember the last time someone asked me how I was feeling, or what my latest test results were. And there’s the hurt that accompanies having asked someone to help me with something physical and for whatever reason, whether its understandable or not, they don’t follow through, and as a result, it takes me a week (and sadly, sometimes longer) to recover physically from what I was told I’d have help with. There’s irritation at having people crack jokes about my dietary preferences like I’m being some ironic hipster in avoiding meat and asking me if I need help getting over it by grabbing a bacon cheeseburger. There’s people who argue with me that I’m an idiot for choosing to not eat bacon. There’s the frustration of having to explain yet again that no, I do not want to try your entree, yes I know it’s delicious, yes, I’m aware that I need to live a little, no, I don’t want it because for me to have a bite of your cheeseburger, steak, or orange beef? That one bite can result in exhaustion, full body aches, what feels like swollen joints, numbness in my hands and feet, or insomnia. Or in extreme cases, all of the above. There’s the extreme anger when someone suggests eating fast food and I decline and they suggest (usually jokingly) that I think I’m too good for fast food. That’s not the case. But grabbing a burger from Burger King, or Whataburger or Jack in the Box? I’m going to be spending the next several days in severe pain. Junk food, red meat, too much sugar, processed foods? They’re toxic to me.

Would you give a diabetic a triple chocolate fudge cake? Would you ask someone who has heart trouble to race a marathon? I’m guessing no.

And I’m guessing that your friend with Diabetes, Cancer, or Heart Disease gets the benefit of you asking them how they’re doing, an offer of “Whatever you need…” and time spent with the person to remind them they’re still valid.

That’s the thing: I’ve felt invalid for quite some time. Because I don’t look sick. Because people forget that I am sick, even when they know better. And I don’t begrudge my loved ones who are fighting for their lives against various deadly illnesses the offers of help and quality time that they get, because I want them to have whatever comfort they need while they fight for their lives.

But I’m human. And I’m sick. And I could use a little comfort. I could use offers of help that actually are help. I could use friends calling me and asking me to grab coffee or dinner or a drink and just listening to me. I could use a hug, someone’s hand to hold, kind and compassionate words to be reminded that I do matter, that I am valid, that they understand that I’m hurting and I’m struggling and I’m doing the best I can with what’s a shit situation. That they know I’m trying, even if it looks like I’m not. To be told that it’s okay that I’m afraid of what my future will be like with these two illnesses, and they don’t think less of me, they don’t think I’m weak for feeling scared. To be told that I’m loved.

I wake up every day, and I wonder how bad it’s going to be. Am I going to be able to take care of my children fully? Am I going to be able to get work done? Am I going to have to spend the day in bed because it’s too hard to walk around? And the worst fear: is it going to hurt to hug my children?

This is my painful reality. And it sucks. And I’m angry. And it’s isolating, being in this. And I try to remember the serenity prayer, because I can’t change this, I can just pray for the strength to manage it and live with it.

~Amber Jerome~Norrgard

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