Sustenance

I remember a point in my life of "Invisible Illness", when I felt that something needed to change. I was living with chronic pain from a back/hip injury and, despite my prayers, I was not healed. So i changed my prayer. I remember saying to God "If you're not going to heal me, would you please strengthen my frame?" And I continued that prayer for years. I still prayed for healing, but strengthening my frame had become my focus. And He answered my prayer! Then, as the years passed, my RSD spread to all four limbs and multiple joints. Yet, I can tell you (with a grin) that He still strengthened my frame. During those years of worsening, when pain was unbearable and the healing I had long pleaded for had not occurred, I changed my prayer again. I prayed that He would sustain me, because I knew I couldn't make it, otherwise. And, now, I can attest that He has sustained me all these years!

So, tonight,while reading a devotional, I was blessed by the following scripture in Isaiah 46:4:

"Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."

He HAS sustained me... even to my old age and gray hairs!
And, for that, I am truly grateful!!

by Jane Gonzales

A Lonely Life

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do. But over the years, an alternate life set in. And, strange as it seems, there were levels to (or within) that life. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound.

Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet. But, though it’s taken much time for me to get to this point, I have arrived!

Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible, considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors. Or, perhaps, you seldom have visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.


by Mary Jane Gonzales

A NOT SO GOOD PLACE

I started noticing, in the last couple of weeks, that I was not my usual self. I couldn’t put my finger on it, but I knew I was “off” somehow. What began as a feeling of heaviness, and grew to the point of anxiety, didn’t make sense to a normally calm person. Not that I never feel “heavy”, but there would have to be a reason for it. And, at the time, the reason eluded me.

As the days passed, and the symptoms grew more pronounced, it became clear to me what was happening. The cause had snuck up on me and caught me off-guard. And then it hit, and everything made sense! I am approaching the five year anniversary of being bed bound!! Just a couple months away, it is coming fast!

In my day to day life, I think I handle it gracefully; meaning “full of (God’s) grace”. Yes, there’s been heaviness at times (especially anniversaries), but not anxiety! And five years is a milestone, monumental to me! Obviously, this is heart wrenching and tears have been shed this week. 

Though I believe in miracles and still hope for healing, truth be told, I consider God sustaining me through RSD/CRPS to be as much a miracle as healing would be. That being said, chronic illness and/or confinement of any kind /the loss of life as you know it, is very traumatic. Depression and tears are inevitable. It’s ok to visit there, but not to live there. ~ For me, "not living there" requires discipline, a balancing act, and a lot of prayer!!

 

by Mary Jane Gonzales 

My Story of Chronic Pain

My life changed years ago, when I got injured from a fall. Then, with ensuing injuries, it changed more and more, as something about my body was suddenly different. The injuries weren't healing properly, the pain was disproportionate to the actual injury and, unlike before, my body had become frail – making me susceptible to more injuries, resulting in more disabilities. All normalcy was lost and that began a downward spiral. Because the injuries weren't healing properly, I was in constant pain, I moved slower, and my movement was limited. I needed assistive devices for walking, for reaching, and pretty much everything.

Bear in mind, throughout this whole ordeal, I did not know what was wrong with me. The doctors had no clue; hence, no diagnosis. To my surprise (and dismay), without a label, there’s no credibility! Many people thought I was faking and, even those who believed me, thought I was exaggerating the pain. One friend, who had committed to driving me to work, suddenly decided after two weeks that she was enabling me. And one family member, who thought I was faking, made my life miserable for years. I know no one can understand the disease or what it’s like, without experiencing it. But understanding it is one thing and believing it is another. Or, more precisely, believing YOU. I now have a good support system among my family and friends, albeit smaller than years past.

Finally, after eighteen years, I was diagnosed with RSDS (Reflex Sympathetic Dystrophy Syndrome), now called CRPS (Chronic Regional Pain Syndrome). There is no cure, as of yet; but research is ongoing and strides are being made every day. Over time, my injuries rendered me unable to work. And, having had this now for 30 years, my life is very confining. I appreciate the abilities I do have and keep very busy. Along with writing books and advocating for awareness of RSDS/CRPS, I enjoy crafting and other hobbies, along with the friendships and support of other Chronic Pain patients I’ve met online.

by Jane Gonzales

Inability

Pain and limitation

Aren’t the things that I detest.

It’s the absence of a life

That I hate most, I confess.

I can reach things with a reacher.

I can even drive a car.

But without accessibility

I can’t get very far.

Like doorsteps with a ridge

That stop me in my tracks.

And public buildings without ramps,

I consider lax.

I know the world has come so far,

Technology and all;

But insight still is needed,

Even at the mall.

 

They make you walk a distance

To their office for wheelchairs.

Don’t they know, if you could walk that far

You wouldn’t need the chair!

And have you seen that escalators

In the mall abound?

But needed elevators

Aren’t easy to be found.

The absence of a livelihood

And inability

To still be self supporting

So distresses me.

 

God, you see within my heart

And you know I’m wearing thin.

Would you strengthen me in spirit

Till a miracle comes in?

Copyright 2002 Mary Jane Gonzales

10 Ways To Support Someone With Chronic Pain

10 Ways To Support Someone With Chronic Pain

What are the most effective ways to help someone you love who lives with Chronic Pain?

Adjusting to an alternate life is challenging, at best, and support is needed in many, different ways. Below are 10 ways to support someone with Chronic Pain:

• First and foremost, believe that their pain and symptoms are real. Be understanding if plans must be canceled at the last minute due to pain.

• Encourage without pushing - While it’s important for them to keep moving, be mindful that they know their body better than anyone and will be cautious of risks.

• Trust their judgment if they say they need to go to the ER (even if they were just there 2 nights ago).

• Attend doctor visits with them to take notes or offer input. Ask questions to learn what you can about their condition, in order to be knowledgeable and helpful.

• Take them places if driving is difficult for them.

• If standing is hard for them, help with grocery shopping. Help with the cooking or have food delivered. Be willing to use paper plates and cups to eliminate dish washing.

• Help them discover new hobbies or forms of entertainment that are within their limited abilities, as this will keep them busy (distracted from pain) and upbeat.

• Build confidence - Don’t let their disabilities overshadow their abilities. As in any relationship, you should focus on someone’s good points, not their bad. The more you esteem them, the better they will feel about themselves.

• Keep stress at a minimum to help prevent flares.

• Pitch in - Donate to research, have fundraisers, participate in events that raise awareness.

September is “National Chronic Pain Awareness Month”. Please join with the Chronic Pain community in raising awareness of their/our condition(s). .

My Experience With Medications

My first thought when asked to write my experience with medications, was that my story might be boring, as I take so few medications. After more thought, however, I kind of concluded that my story is not that uncommon. I used to think it/I was weird to be so chemically sensitive, not just to meds but other things as well (like herbs, certain supplements, and many fragrances, etc). But, over the years, I've met many others with RSD/CRPS who are likewise chemically sensitive. Still, we all  know that, despite the commonalities, there are many differences, be it with symptoms, treatments, medications, or whatever, proving once again there is no rhyme or reason with RSD/CRPS. Though some can take opioids, some can't even take aspirin. I probably fall in the middle of the spectrum. Though hyper-sensitive, I have found some meds I am able to take.

 

Having had RSD/CRPS for 29 years, I can't remember the names of all the meds I have tried and doubt they are all still in use, anyway. I do know I have tried many NSAIDs (Nonsteroidal Anti-Inflammatory Drugs) over the years, such as Naproxen in earlier years, which I couldn't tolerate, and Celebrex in later years, which I could tolerate. Other anti-inflammatory drugs I tolerated well were Bextra and Vioxx, which were ultimately deemed unsafe and taken off the market. In the end, NSAIDs caused damage to my esophagus and gave me a stomach ulcer. Though I still take an anti-inflammatory, I have switched to Meloxacam because it's a lower potency and it's just enough to take the edge off my pain.

 

Though I have tried Opioids/Narcotics, they didn't work out for me. Vicodin and Percocet were too nauseating. Hydrocodone was too constipating and made me sleep alot. Even, while awake, I was drowsy and unproductive. Plus, the dose kept needing to be increased and I was worried about becoming addicted. My overall thought is, if medicine helps the issue at hand but creates other problems, it defeats the purpose. I would just be exchanging one problem for another.

 

I also take the Anti-seizure/Anticonvulsant drug, Lyrica, which works well for me; whereas, Neurontin did not. The NSAID and the anti-seizure help by taking the edge off my pain. For a new injury or a flare, I supplement with Tylenol Arthritus. Beyond that, I've learned or chosen to cope with the pain. Admittedly, my pain is less than it used to be but this has always been my method/routine, regardless of my pain level. The only difference is how many tears I've cried, then (with greater pain) versus now (with lesser pain).

 

In recent years, Namenda (the drug used to treat Alzheimer's Disease) has been used off label to treat RSD/CRPS. It is an Anesthetic that acts to inhibit glutamate, which transmits pain messages to the pain receptor neurons.   In layman terms, it would help reduce the pain by blocking /reducing the brain's mis-firings. I took this med for a short time. Though there was no negative reaction to the drug itself, the side effect of constipation caused me to be severely impacted. Despite taking precautions, nothing could have prepared me for that situation. I believe Namenda is a good drug and a viable option for treatment of RSD/CRPS, but it's effect on me is not one I care to re-visit.

 

Nexium, an Acid reducer, is also a staple in my arsenal, since I suffer from GERD. Before taking Nexium, I took prescription Pepcid, which didn't do much at all for me. I also require an Anti-fungal, which, too, is not uncommon with RSD/CRPS. The one I take is called Ketoconazole. Though it doesn't cure the problem, it controls it better than the other two meds I previously tried. In my experience with RSD/CRPS, it's been a case of injure easily/ heal poorly, meaning that each injury has healed partway and stopped. I see a similarity with medicine, in that it helps but doesn't heal (i.e. it goes partway and stops)... random thought!

 

For Diabetes, I take Glyburide. I first tried Metformin but reacted to it. So I stopped taking it awhile, then tried it again and reacted to it again. My doctor laughingly says, when discussing medicine side affects "Well, if it can happen, it will happen to you." I took the blood thinner Plavix for many years with no problem, then suddenly I couldn't take it anymore. So now I take low dose aspirin to prevent my blood from clotting.

 

I took Glucosamine Chondroiten for at least 8 years and it worked like a miracle product but later, when I was on Neurontin, the Neurontin conflicted with the GC and I could not take the GC after that. The Neurontin actually conflicted with another supplement, as well. Ultimately, the Neurontin burned my scalp and body, requiring me to discontinue it's use.

 

In my wellness regimen, I take extra (though not massive) amounts of key supplements like multi vitamins, Calcium, Magnesium, Vit. D & C. I might add that my hypersensitivity is not only to what I take, but also how much. So that's the story of a chemically sensitive patient. For others of you with the same situation, I hope you have a doctor who listens and works with you to find what helps you the most.

 

Copyright Mary Jane Gonzales

Written for Reflex Sympathetic Dystrophy Magazine #2