Reality and the Mirror

Reality and the Mirror

I find myself feeling frustrated and desperately irritated at the way my body's energy levels fluctuate so much, and that I'm at the whim of my immune system as to whether I'm going to have a functional day or not. I'm frustrated, because I WANT to do more! I WANT to go camping!!! Oh, how I long to be in nature. But I can't! Not this weekend at least! 

I wanted to go with my older sister on her move to Colorado. But I couldn't, because something said "NO! You are not going to go, I won't let you!!!"

"Who are you, that I may face my enemy by name!" I say loudly, but with a quiver in my voice, as I gird myself up to face my enemy, picking my helmet up and unsheathing my sword.

"Turn around and see!" the voice sneers.

I turn, and see... my sword falls from my hands. I am stunned. Before me is a mirror, with me in the reflection. But, it is not me. I see someone thin and haggard, battered and bruised, weak and weary, stooping as if carrying an unseen burden. But there is no denying that it is me. "Wha...what does this mean?" I hesitate, not knowing if I want to know the answer.

"I am you. You as you really are. What you think you are is a facade. An act put on for others and yourself, to try to fool them into thinking you are something you are not. This is you, and this is what prevents you from going." 

How do I make myself be satisfied with the little I can do?!?! I know I'm doing all that I can, but the dishes pile up, and the floor needs vacuuming, and I haven't put laundry away in forever! Not to mention, I hear the calling of the trees, the want to be in nature, to sit in the sun beams, to feel the warmth on my back and the breeze tossing my hair, to listen to the cardinals and robins singing and the squirrels fussing. But the strength leaves me the second I think about going out. My arms grow weak, my legs get shaky, and I give up on the idea.

I feel myself on the slippery slope to the cavern of the multi-headed monster Depression! But, I'm too tired to climb out of this hell-hole! All around me is negativity, blame, hatred, hurt, pain, tears, havoc. I look up, and I see the world I came from, full of hope, determination to fight, feelings of contentedness and pride, not of despair and hopelessness that accompany me now. But what I see up there. Is it real? Or is it a facade I put on, like my reflection in the mirror. I don't know. I'm tired of it. Just so tired.

Helpful B’s

Helpful B’s

As my doctors searched for solutions in the Western medicine way, I started looking at alternative therapies, mostly with supplements and chiropractic care. One of my earliest discoveries was in supplement form. Today, I don’t remember where I had first heard that certain vitamins could help health conditions. My adolescence also included a driven quest for knowledge (which is also know as being a nerd) I had read somewhere that certain vitamins, specifically the B vitamins, can help with nerve health. The B’s are a group of water soluble vitamins that, while being chemically distinct, tend to appear in the same sources (food), and are essential for energy metabolism in cells and promote healthy nerve function. They are: Vitamin B1 (thiamine), Vitamin B2 (riboflavin), Vitamin B3 (niacin or nicotinic acid), Vitamin B5 (Pantothenic acid), Vitamin B6 (pyridoxine, pyridoxal, pyridoxamine), Vitamin B7 (biotin), Vitamin B9 (folic acid), Vitamin B12 (various cobalamins; commonly cyanocobalamin or methylcobalamin in vitamin supplements) Interestingly, the cause for the gaps in the numbering of the B’s is due to other related nutrients that were once thought to be vitamins, but are now classified differently. source: https://en.wikipedia.org/wiki/B_vitamins

My sister and I read what we could, and went to the store. We happened upon a “super” B-complex, which contained higher-than-average levels of most B vitamins. Since B vitamins are water soluble (meaning your body easily rids itself of excess vitamins through urine, as long as the kidneys are healthy), taking higher doses typically is OK. There are some B’s that you can overdose on, but all the levels in a complex are lower than the maximum. There is very little scientific evidence that supplementing B vitamins is beneficial, but there is plenty of testimony. I brought up the idea of taking the vitamins to my doctor, and she pretty much said, “It may not help, but it won’t hurt you, either.” So, I decided to give it a try.

The first thing I noticed was the energy boost I got shortly after taking the vitamin. If nothing else, I was thankful for the energy, and there was no crash, like caffeine gives you. However, over the course of a couple weeks, I noticed that, while I still had headaches and migraines, my thinking became clearer, and the pain wasn’t as intense. Also, my nerves felt calmer. It’s hard to explain, but for as long as I can remember, I have always felt that my nerves were “over-charged” and felt like they were “static-y” and I’d get the feeling I was getting internal static electricity zaps. I don’t even know if that makes sense. But the B’s seemed to turn the voltage down, and reduced the shocks, which was a welcome change. Since the B’s help with energy production, you may notice a burst of energy shortly after taking them. So, I advise the B’s be taken with breakfast or lunch, and avoid taking them close to bedtime. 

The only side effects I noticed was stomach irritation if taken on an empty stomach, and bright yellow urine (which a doctor has since told me is the food coloring put into the supplement). This was a pretty uniform experience with the different brands I’ve tried over the years. However, B supplements are not created equally. Most compressed tablets are not fully broken down in the digestive tract, and I have even noticed one brand passed through my GI tract whole. Spending a little extra and getting a “high potency” or “easily absorbed” type is well worth it. 

However, currently, I am finding myself unable to benefit from the helpful B’s, as my gastritis is in a bad flare. I am unable to take the B vitamins with out irritating my stomach, even if taken with food. But, I will not dismiss their benefits that I had received over the years. 

Also, you may have noticed that I use a variety of text and background colors. Straight black and white is too harsh on my eyes and make my migraines worse. I have been playing around with different color combos, trying to find ones that are easiest to read. 

Triptan Terrors

Triptan Terrors

My trial and error session with the triptans, as the group of new abortive migraine medications were called, was mostly error. Triptans were a relatively new class of drug at the end of the last century. They were designed to be taken at the first sign of a migraine and work by stopping the migraine before it took full force over the mind and body. They were powerful, promising drugs, and, to many migraine sufferers, a lifesaver. But, not for me. 

Just like most any other medication, powerful effects also meant the possibility of powerful side effects. And my side effects were not pretty. I was allowed to take it only two days a week. Having to decide which day I wanted to try to get relief and feel better was hard, to say the least. I wanted to feel better everyday. Since the medications worked best when taken as early as possible, preferably during the prodrome, I had to figure out when a migraine was starting. This was difficult, as by then, my head pains ran all together in a muddled mess and there was difficulty in distinguishing where sinus pain ended and migraine pain began.

I found that after every dose I would take, I would get what I thought of as “neuralgia”, a term my sister had coined to describe the side effects we both experienced. I didn’t realize at the time that this was, indeed, a true medical term. She had just used the scientific words for nerve (neuro) and pain (algia), to describe the sensations we experienced. And, literally, my nerves hurt, well, the nerve endings. I felt on fire at times, other times breathing was painful, my finger tips and skin hurt. It got to the point by the third or fourth different drug I tried, Zomig (zolmitriptan), that my hair follicles would hurt, and a soft breeze teasing my locks would be excruciating. After a couple times of experiencing this with Zomig, my neurologist wrote off the mighty class of triptans, and continued to search elsewhere.

I began to feel discouraged, and my depression started to get ahold of me, negativity oozing from me and my thoughts constantly, a grip that I wouldn't be able to shake for over a decade. I was diagnosed at 16 with chronic depression, and have continued to fight the battle of negativity and apathy through the years, and continue to do so today. As a matter of fact, I am fighting the emotions right now. Being able to acknowledge the feelings, and allowing them to take their course while knowing what they are, and not taking them seriously helps minimize their effects on my mood. Still, the chronic pain wears me out, and when I'm tired, I am most vulnerable to feelings of hopelessness and being overwhelmed. 

Head Pain and The M-Word

Head Pain and The M-Word

It began with obscure body aches around the time I entered puberty, at age ten or eleven. I was aware of a general malaise, a feeling of not being able to function at my best potential. As a preteen, I figured that this was part of growing up that every kid faced, though, none of my peers in school ever complained of it.  Then started a constant, dull headache around the time of the body pain, and weak attempts were made to assess the culprit. Since the headaches centered in my forehead, with a deep pressure, like a balloon was pushed up my nose to my sinuses and was being filled with air, to the point that I felt my head would explode, we all assumed it was allergies or sinuses. After diagnostic exams and allergy tests were done with nothing standing out to the ENTs and allergists, I was given the diagnosis of chronic sinusitis, and put on a long-lasting, non-drowsy antihistamine, that just so happened to be the cure-all-end-all of allergy sufferers of the mid-90's, Claritin.

Then, a couple years later, came the "M" word: migraines (migraine with aura, in my case, something that happens to about 20-33% of migraine sufferers) . The nausea, fatigue, confusion, dizziness, panic-y feeling that accompanied the stabbing, throbbing pain in the temples, one or both sides of the head, the forehead, the back of the head. You see, the migraines weren't content to occur in the same place each time, like the sinus headaches I was reluctantly getting used to, nor do the present themselves the same way each time. No, they changed each time, as if playing a cruel game of "Guess-Where-and-How-It'll-Happen-Next-Time!". 

One doesn't understand the incapacitating effect a migraine has on its victim, unless one has experienced it first hand. A migraine is NOT simply "a really bad headache", but rather, a cascade of symptoms resulting in, many times, the utter incapacitation of the victim for periods of 4- 72 hours, and sometimes longer. Auras: sensing things that aren’t there (akin to hallucinations, but not caused by psychological illness); visual, olfactory, physical, and occasionally auditory for me, were part of the precursor, called the "prodrome", that warned this hapless victim that the agonizing pain was coming, most of the time. Sometimes the pain just popped out of nowhere. Also included in the prodrome were confusion, fatigue, and irritability, as well as uncontrollable yawning and other oddities . 

Finally, the pain. Oh, the pain. Wave upon wave of nauseating pain. I remember my mother telling me (in a futile attempt to comfort me) that she sometimes got migraines as a young adult, and she would get so nauseous she would vomit, then the migraine went away. I have yet been able to vomit from a migraine, but not from lack of nausea. And believe me, I have tried. One thing's for sure, I will never suffer from bulimia, for I cannot make myself throw up, no matter how many fingers I stick down my throat. 

And, there was no relief of the pain. Popping Tylenol (acetaminophen), Aspirin and Aleve (naproxen) was of little help (I am allergic to ibuprofen or Advil and Motrin, or I would have included this NSAID). Combining the above medicines with caffeine helped, and I would often drink a strong cup of coffee with the start of a migraine, as long as my stomach permitted it. Combining an NSAID (Aleve or Aspirin) with Tylenol (acetaminophen), helped some, too. The best combination I found was Excedrin, which combines the mild analgesics of Tylenol and Aspirin, with the 'pain-relieving aid' caffeine. These were a god-send, at first, allowing me to function enough through a migraine and do my school work. As the migraines become more and more frequent, so did my consumption of Excedrin. 

Inevitably, I was soon stuck in the cycle of rebound headaches. In short, the body gets used to having certain chemicals (Tylenol and/or caffeine in my case) in it, and when deprived of those chemicals, re-creates the cause (the headache) that results in the desired effect of getting more of the chemical (in my case more Excedrin). Soon, I was far exceeding the recommended daily allowance of the medicine in a desperate attempt to find relief, at times regularly taking over twice the limit. I’m surprised my liver survived the assault. 

Upon seeing a new neurologist in my late teens, and, confiding in her how much I abused this medicine, I was ordered to stop the Excedrin and any extra consumption of caffeine. I was terrified at the prospect of life with out my crutch, and I broke down into tears in the office. She consoled me and acknowledged that the next couple weeks would be hell, but after the chemicals had slowly left my system (a process that takes about two weeks), the rebound headaches would stop, and treatment of the migraines could begin, with a well-touted drug called Imitrex (sumatriptan). I felt something I couldn’t identify with. Hope.

The Debate of Pain

The Debate of Pain

As a sufferer of chronic pain for many trying years, I find myself wanting to reach out to others and try to help by offering insight in the world of chronic pain to other sufferers, their loved ones, and those who are curious. 

My goal is not to press new information into the hands of those who don't want it, to insist of new, unproven remedies, but to gently encourage and show that, yes, it is possible to live a full life within the confines of pain, but, perhaps not in the way you'd imagine. 

My earliest memory of chronic pain began with headaches, and, then, their fiercer and more evil cousins, migraines. Then I herniated my L5-S1 disk when I was seventeen, and, eventually, the disk wore out, and I was diagnosed with degenerative disk disease (DDD) after a fall at work in 2011, and then became unable to work. I had to file for disability, a process that took two and a half years to get approved for, and another six months to get benefits from the Social Security Administration. During this time in limbo, I entered my “Dark Days”, a period of about three years that were filled with doctor appointments, failing treatments, hospitalizations for depression and suicidal thoughts, and, of course, PAIN. All the while I had general muscle pain, which I now know is fibromyalgia. Then, about a year and a half ago, came the joint pain that was diagnosed as psoriatic arthritis (PSA). “What will happen next?”, I sometimes wonder.

But, somehow, as a caterpillar undergoes metamorphoses while in an apparent state of limbo, I seem to have changed into something more than a person whose life was dictated by pain, and could think of nothing else. Something much more. I understand that I will probably always have pain in this imperfect body, but that’s okay. Instead of fighting it, I accept it and work with it. It’s like I see light at the end of a tunnel. I see a future. I feel hopeful. I have faith. I will not give up.