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Entries in chronic pain (2)

Saturday
Feb022019

What I Have Learned through the Challenge of Pain

 

WHAT I HAVE LEARNED THROUGH THE CHALLENGE OF PAIN

Well, I at last have a new, functioning and looks-like-I'm-legit laptop making it simpler to update here! No, not really. It's been the wildest ride since I last posted a year ago, one I should have been posting about, stem cell recoveries are a funny thing. First, you have to tell everyone how AMAZING they are, because they are. Then you go through the 9-12 month recovery period and all of a sudden, life is SO much more doable! I used to say, if they could just take the pain away, I can deal with being in a wheelchair. Just get me out of this much pain. If you've followed at all, you've surely read the part about my spinal contractions equalling labor contractions, every ten to fifteen minutes around the clock for weeks or months, while every contraction brought with it butcher knives that seem to shovel the muscles off my femur bones followed by the shooting of boiling icycles down the legs to the toes, that stayed at a cool 42 degrees F. F-f-fUN stuff! That's jsut when I was in a "flare". Otherwise, it was just a brewing cesspool of fire and daggers circling the vertrebrae dancing up and down the spine until I did someting stupid, like sit for more than five minutes, and it would start all over again.

That said. No small violins, only electric guitars, people!
But, once I reached what they called my new baseline of pain levels, after a year of the rollercoaster after effects of feeling like Wonder Woman on the upswing and Frankenstein's daughter on the down, as well as physical therapy (a MUST), I sat back and looked at what was, compared to what was now.

It became a confusing thing to see.

I felt absolutely selfish.

I wanted more.

It was like offering a child a Vanilla cone, only for them to complain it wasn't Vanilla Bean.

I've already given you guys a taste of what was. What was "now" was EONS from where I was. I could now sit for almost two hours at a time, which meant going to a movie with my hubby AND a drink (medications doesn't allow for much more than one, so that was good, fit into my time frame). This was a miracle! But what was even more of a miracle, was that the spinal contractions which took six years of my life from me, my children, my husband and family, had completely stopped. Not one contraction since my first stem cell transplant on June 28, 2017. Not one. That alone should have had me kneeling at the feet of my physician. Which I actually did, on my second round of stem cells.

That's right. I did it again. Nonetheless, this time, on Halloween. Made sense to me, seeing's that I was Frankenstein's Daughter and all.

My second stransplant was exactly like the first, but this time, it involved a second phase, and this is why:

No matter what improvements I experienced, there was still one issue which was not addressed during my first transplant, a situation of increasing pain levels L4-5 to Sacrum discs, which had begun derailing all of the progress we had achieved so far. My lower lumbar levels were now screaming after 45 minutes of sitting. Yes, my contractions were gone, so I should have been thrilled! But pain is pain. Anyone who lives in chronic pain, no matter the levels, understands that pain is like a magnet to the brain and becomes all you can think about. How you wish it wasn’t there. So, I used my tools of distraction, learning new things, writing, not overdoing things, but still nothing could grant me the serenity of knowing the things I cannot change. The decision was made. I would go for number two.

The original protocol involves the actual stem cell transfusion (this particular protol uses hundreds of millions of cells at one time, rather than tens, multiple times) then, intramuscular injections of stem cells made into a "paste" injected along the spine. However, during my second transplant, the doctor used a live flouroscpoy (an in real time video x-ray) to watch exactly where the phase two of stem cell paste injections will this time, enter INTO, the vetrebral spaces.In particular, one with an artificial disc! The space which housed my artificial disc at L4-5 had caused what happens to many patients over time, it adds so much pressure to the levels below it, that not only is the artificial disc level compromised by blinding pain, the levels below it grow increasingly painful as well.

So here I am, it is the beginning of February, three months out, and my perspective has changed. Instead of expecting to be who I was. I am now learning that it is ok to be who I am now, or whatever the next year should bring. The second transplant dramatically improved these levels, L4-5 is but a distant memory, but the lower levels are proving to be more of a beast that we expected. I learned to walk again a year after my first transplant, yet limitations only allow for this within our home, short spurts with sofa at arms length. I've tried going out without my chair, but dont' get too far, and have realized I'm more of a snail that a mom who needs to "get sh*t done!". I have learned that even the most magical of sciences, has its limitation when there has been a level of mechanical damage that has been done. Finally, I can truly say, I am ok with this. This is not giving in, it is opening up to whatever will be and all the possibilities that could be, good or “bad”. This has taken a long time to get to.

Life may never be what it was, or what at first I so desperately hoped it would be again. It is ok for some things to be what they are, and to find the beauty in what is. I have learned to live a life with more blessings than I could have ever experienced had I not been hurt. For the last seven years I have been able to be home to watch my children grow rather than constantly traveling to shoot destination weddings and portraits of those wealthier than God (not that that's a bad thing, it just wasn't being with my kids), and being too busy editing all week to help them with homework, or problems, or simply lay on the bed while all four of them circling as a band around me, singing and playing our favorite songs - mine being, whatever my children played and the songs they sang. My husband has unearthed within him a patience and an empathy not just for myself ,but for others facing challenges, as have our children. Our children understand that a' life challenge' can be an opportunity to reframe what it means to live one's life. They have garnered,over time, an unyeilding urge to create change in our world by witnessing how misunderstood their mother could be by others. They understand the challenges a life challenge can create and that we never truly know what is going on behind closed doors. Also, whatever upturns one’s live is a life challenge, and that the processing of it is pretty much universally the same. That everyone has a story no one else has lived, and yet it's everyone's story at once. I have learned how many fragile, diminutive moments of joy I bypassed for so many years becasue I was moving too quickly to notice them. I have realized the joy in taking out the trash and stopping because a ray of sunlight has turned a simple leaf into an xray version of itself, and having it be the highlight of one's day. I have gotten to know a squirrel in our backyard and named it Rocky. It has many names, as we have many neighbors, to me, he's mine. I have learned of the devotional love and bond which can grow between a service dog and her handler. How one animal can make a very scary world, once agian, make sense. I have learned that not everyone will understand what I have been through, but in the end, I don't need nor expect them to. I only offer hope that one day all will experience the empathy we have so humbly received. I have realized that not everyone needs to be your friend, and most have not truly been one at all. That when your world crashes, it is those who carry you through the flames that define friendship as though it were etched in stone by God. I have realised that if every parent could spend every moment of their time with their children, you would see them as people, not kids. That there is no place you would rather be than exactly where you are, even though others may wish they never saw where you are, at all. I have seen colors on raindrops and am convinced there are many more than we have been told. I learned to love football because of a story I saw about what it can take to face a challenge and rise above. Go Seahawks! But most of all, I have realized that the meaning of life can be so simple. For me, it has come down to loving and connecting with others, and meaning every word I say. If I cannot answer the phone, I will wait until I call you back with my world aside and at your feet. I have learned that the worst thing I can do another is to place expectations, it's like making them take a test they couldn't study for if they tried. That no one should ever be expected to truly know every thought or feeling you have, or be expected to respond to something they have never lived. I have learned that everything that I have become after my accident, good or bad, has happened because something shattered. A life exploded, everything I knew, every way I knew how to live went up in a puff of smoke. And yet, here I am. Rising from ashes does an incredible thing, turning into somehing akin to tempered steel, the only thing on earth that endures fire only to come out stonger than before; that just because life is now different,doesn’t mean it isn’t the life you are supposed to lead.

So, as I meter my sitting time, and wheel with Blue from A to B, as I do homework with my children or breathe in love of a man who has risen through his own shattered house, and as I continue to meet others who's pain is lifted for even a minute just because someone else has been there, too, I etch this life in stone, as my own.




 

 

Sunday
Jul212013

What is CRPS or Complex Regional Pain Syndrome

 

A gradual loss of mobility can put a girl in denial. Mine is accompanied by the most blinding pain. And the decline continues to progress.

I was injured, but how did the loss of mobility and progressive paralysis get to this point?

Upon my neurology appointment this past Friday, the doctor asked me if I was diagnosed with the condition CRPS... and I knew it sounded familiar.

My new spine surgeon, as well as my pain management doctor, have diagnosed me with CRPS or Complex Regional Pain Syndrome. The symptoms are exactly what I have. So we will now be leading the treatment phase with this in mind. Unfortunately, there is no known cure. It began with the concussion, was compounded with the upper and lower spine surgeries done at the same time, etc. So, it seems there may be an answer here as to the "why". Now we need to figure out "how" I can live as normal a life as possible with this. "What", besides my next surgeries of Spinal Cord Stimulator and Rhizotomies, will improve my quality of life? Is it possible to ever walk again? Will I ever be free from debilitating pain? You know, little things like that. If my current in-home physical therapy does not help, I will have a fusion of levels C7-T2 as well as other possible levels not being helped by current surgeries or treatments. Also, how do we calm the tremors? How can we stop the progression of this condition as it continues to spread throughout my limbs?


Here is information I pulled from WebMD.

Complex regional pain syndrome (CRPS), also called Reflex Sympathetic Dystrophy Syndrome, is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems.

There is no cure for CRPS.

What Causes Complex Regional Pain Syndrome?

CRPS most likely does not have a single cause; rather, it results from multiple causes that produce similar symptoms. Some theories suggest that pain receptors in the affected part of the body become responsive to catecholamines, a group of nervous system messengers. In cases of injury-related CRPS, the syndrome may be caused by a triggering of the immune response which may lead to the inflammatory symptoms of redness, warmth, and swelling in the affected area. For this reason, it is believed that CRPS may  represent a disruption of the healing process.

What Are the Symptoms of Complex Regional Pain Syndrome?

The symptoms of CRPS vary in their severity and length. One symptom of CRPS is continuous, intense pain that gets worse rather than better over time. If CRPS occurs after an injury, it may seem out of proportion to the severity of the injury. Even in cases involving an injury only to a finger or toe, pain can spread to include the entire arm or leg. In some cases, pain can even travel to the opposite extremity. Other symptoms of CRPS include:

    • "Burning" pain
    • Swelling and stiffness in affected joints
    • Motor disability, with decreased ability to move the affected body part
    • Changes in nail and hair growth patterns: There may be rapid hair growth or no hair growth.
    • Skin changes: CRPS can involve changes in skin temperature -- skin on one extremity can feel warmer or cooler compared to the opposite extremity. Skin color may become blotchy, pale, purple or red. The texture of skin also can change, becoming shiny and thin. People with CRPS may have skin that sometimes is excessively sweaty.
CRPS may be heightened by emotional stress.

How Is Complex Regional Pain Syndrome Diagnosed?

There is no specific diagnostic test for CRPS, but some testing can rule out other conditions. Triple-phase bone scans can be used to identify changes in the bone and in blood circulation. Some health care providers may apply a stimulus (for example, heat, touch, cold) to determine whether there is pain in a specific area.

Making a firm diagnosis of CRPS may be difficult early in the course of the disorder when symptoms are few or mild. CRPS is diagnosed primarily through observation of the following symptoms:

    • The presence of an initial injury
    • A higher-than-expected amount of pain from an injury
    • A change in appearance of an affected area
    • No other cause of pain or altered appearance

How Is Complex Regional Pain Syndrome Treated?

Because there is no cure for CRPS, the goal of treatment is to relieve painful symptoms associated with the disorder. Therapies used include psychotherapy, physical therapy, and drug treatment, such as topical analgesics, narcotics, corticosteroids, antidepressants and antiseizure drugs.

Other treatments include:

    • Sympathetic nerve blocks: These blocks, which are done in a variety of ways, can provide significant pain relief for some people. One kind of block involves placing an anesthetic next to the spine to directly block the sympathetic nerves.
    • Surgical sympathectomy: This controversial technique destroys the nerves involved in CRPS. Some experts believe it has a favorable outcome, while others feel it makes CRPS worse. The technique should be considered only for people whose pain is dramatically but temporarily relieved by selective sympathetic blocks.
    • Intrathecal drug pumps: Pumps and implanted catheters are used to send pain-relieving medication into the spinal fluid.
    • Spinal cord stimulation: This technique, in which electrodes are placed next to the spinal cord, offers relief for many people with the condition.

This is all both enlightening and disheartening at the same time. We now have a name, but what can we do about it?

And the journey continues...