Open Letter to Pain and Its Friends

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Dear Pain, Fatigue and Weakness,

I’m just writing to tell you that you’ll never, ever win. I will never stop fighting. You’ve hit me over and over with your best shot, but I keep getting up and living my life. I’m much stronger than you think.

Even if you’re invisible, it doesn’t matter. I have fought cancer, heart disease, stroke and a variety of other calamities that you and your relations have likely made worse. But I’m still here.

So, even if I must rest on some days, get ready for an even bigger fight. I will continue to take care of myself just so that

YOU . . . WILL . . . NEVER . . . WIN!

Maybe you ought to rest up as well. I’m ready to start our fight all over again tomorrow and all the other tomorrows yet to come.

Sincerely,

mcreyscope’s musings on chronic illness

P. S. The same goes for anyone else you might want to bring to the fight.

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Posted in Chronic Pain and Chronic Illness, Inspirational | Tagged , , , , , , , , , , , , , | Leave a comment

It Just Keeps Coming

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I thought it was time to write a blog about what has been going on with my chronic illness.  As those who have read my blog know, I suffer from a paraneoplastic neurological syndrome that was triggered by Stage IV melanoma.  To learn more about what this is, read my previous blog entry:  https://mcreyscope.com/2014/02/10/what-is-paraneoplastic-syndrome/.

***Over the past five or six years, I have experienced a number of serious medical issues that are likely all related in some way to the cancer that started it all.  Included are chronic pain and overwhelming fatigue that very much mimics the symptoms of ME/chronic fatigue syndrome and fibromyalgia.***

pain psyodelic

My paraneoplastic syndrome has been treated with high dose steroids, cyclophosphamide (Cytoxan), and high dose IVIG (intravenous immunoglobulin G).  All have nasty side effects.

***The steroids make you crazy, the Cytoxan is a potent chemotherapy drug that can cause severe nausea and even cancer when taken for long periods of time (like I did), and the IVIG can cause things like aseptic meningitis and blood clots (both of which I have had the pleasure to endure).***

Last summer I went to the Mayo Clinic for a consultation for two reasons:  (1) my symptoms were no longer stable taking the Cytoxan, and (2) I was afraid of what the Cytoxan might be doing to me since I had been taking it for about two and one half years.

The doctors at Mayo strongly recommended that I stop taking the Cytoxan and recommended a high dose IVIG protocol.  When I returned home, my home neurologist first started me on his own dosage (less than what was recommended).  Regardless, the result of the first dose was a bout of aseptic meningitis (headache, high fever, very ill).  After the formal letter came from the consultant at Mayo, he started me on the new higher dosage protocol (after insurance approval of course).

***After receiving the loading dose of IVIG in October 2014 over a three day period under the new protocol, I had a heart attack (see my post:  https://mcreyscope.com/2014/11/01/heart-attack-a-reminder-of-my-fragile-mortality/).***

Whether or not this was a direct result of the IVIG or not is something that can not be determined with absolute certainty.  After all, I did have acute coronary syndrome previously in 2010 which had led to 4 stents in my LAD artery (the so-called “widowmaker”).  See my post at:  https://mcreyscope.com/2014/01/24/heart-attack-but-i-have-melanoma/

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Of course, the IVIG had to be stopped until I had recovered.  I was now taking Effient along with Aspirin (which I had been taking for several years).

***Effient (prasugrel) keeps the platelets in your blood from coagulating (clotting) to prevent unwanted blood clots that can occur with certain heart or blood vessel conditions.  Effient is used to prevent blood clots in people with acute coronary syndrome who are undergoing a procedure after a recent heart attack or stroke, and in people with certain disorders of the heart or blood vessels.***

On January 6-8, 2015, I again received the loading dose of IVIG according to the Mayo protocol.  This time, there were no serious side effects and I actually could see some improvement in my overall condition after about 72 hours.  I then received weekly doses on January 15th and January 22nd.  Each dose was 0.4 gram per kilogram of weight or about 40 grams of IVIG.  The brand of IVIG had been changed to a pre-mixed version in hopes of preventing a repeat of the clot that had occurred in October.

***On Friday, January 23, 2015, I awakened to what I thought was something in my right eye.  But I couldn’t get it out.  I realized that there was a blind spot covering at least the lower left quadrant of the field of vision in my right eye.*** 

I made an appointment to see my ophthalmologist as soon as I could which was Monday morning at 9 am.  Testing was done and almost immediately upon examining the eye, the doctor diagnosed a branch retinal artery occlusion as the cause of my blind spot.

On Thursday, I saw the retinal specialist.  After even more testing and examinations, he essentially came to the same conclusion.  Basically he explained that there was a relatively large piece of cholesterol plaque lodged in a branch of the retinal artery.  This was causing the blind spot.  It would not get better.

***But, he advised things could be much worse.  The occlusion was a stroke which could have gone to the brain and killed me or blocked the main retinal artery resulting in total blindness in my right eye.***

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Because the most likely causes of such a clot are either a build-up of plaque in the carotid arteries or plaque coming from the heart because of a problem with a heart valve, further testing was advised.  I will undergo an ultrasound of my carotid arteries on Monday and we will go from there.  The echocardiogram that was done in October, when I had the heart attack, showed no problems with my heart valves, so I will likely not repeat that test.

***I have been through so much and so many of the things that have happened could have killed me.  It once again just goes to show that it is not yet my time to leave old planet Earth.*** 

I do admit that it is tough.  It can be especially tough on the days that the pain is so bad that I just want to scream.  But I have not given up and I refuse to give up.  I will get up each day and go on with my life.

And, I think I have proven, at least to myself, that I have a whole lot of living left to do.  Despite it all, I am going to Nashville this weekend to participate in a meeting of the Sons of Union Veterans of the Civil War.  I am tired and I hurt and I know I will pay for it next week.  But I choose to go anyway.  I guess I’m just stubborn.

***So, I tell anyone who suffers from a chronic disease – keep on living.  Find a distraction.  Keep those that care close to you.  And love every minute God gives you.  Who knows?  You might make a difference for someone else.  That is my main ambition.***

After all, I have a guardian angel looking after me.

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Please read my other posts on this blog at:  http://www.mcreyscope.com

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Posted in About Melanoma, Chronic Pain and Chronic Illness, Heart Disease, IVIG, Paraneoplastic Syndrome | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Now just a minute, what is this thing called pain?

What-is-Pain

There are all kinds of different types of pain.

  • One kind is the pain we feel when we touch something that is too hot, too cold or too sharp.  This kind of pain exists to try to protect us by activating the withdrawal reflex – we move our hand or other body part away from the potential harm.  It comes from the most primitive parts of our nervous system.
  • Another kind of pain is when our body is injured.  This kind of pain helps us heal by discouraging physical contact and movement of the injured body part.  The injury could be from a wound, an infection or some other inflammation.  It is activated by our immune system.  And it can be so intense that it needs to be reduced by some kind of treatment.
  • There is still another kind of pain that is caused by some kind of abnormal functioning of our nervous system.  There has been damage to our nerves and pain signals have been distorted in some way.   These mixed up pain signals can cause our brains to interpret pain as more or less severe than it actually is.  Basically, this is how most doctors tend to think of chronic pain – that it is a product of damaged nerves and is not “real” pain but something else.  I think this is part of the reason why doctors try so many different treatment approaches including psychological approaches.  They just don’t know what causes it.

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I have a theory and that theory is that this pain from bad or damaged nerves also has its source with inflammation.  The inflammation in our nerves and other parts of the nervous system triggers the immune system just like a physical injury or an infection from an invading virus or bacterium.  Because we already have an abnormally functioning nervous system, the immune system gets its signals crossed and begins to attack normal cells instead of disease or injury.  And from these attacks comes the kind of pain that makes up almost all chronic pain.  The kind that never ends.  The kind that disrupts lives.

There is a broad spectrum of autoimmune diseases.  I think diseases like fibromyalgia and ME/chronic fatigue syndrome are subsets of this spectrum.  It’s part of the reason why these diseases share so many symptoms of other diseases and are difficult to diagnose.  I think the same is true of what I have – paraneoplastic neurological syndrome – and many other disorders that are yet to be found and named.

But pain is more than the clinical definitions or theories on why we might experience it.  And more importantly, chronic pain is something far more complex than the signals sent to the brain.

chronic pain is hell

Pain changes you.  You might learn to deal with it but it never goes away.  It’s kind of like the nasty heartbreak that you feel when you lose someone that you dearly love.

It can be described.  You can put words around it.  But you never quite feel that you have expressed it in a way that truly communicates its magnitude.  You believe that you come up short in telling someone else how bad you really feel.

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You look for other words, other descriptions.

“People are afraid of themselves, of their own reality; their feelings most of all. People talk about how great love is, but that’s bullshit. Love hurts. Feelings are disturbing. People are taught that pain is evil and dangerous. How can they deal with love if they’re afraid to feel? Pain is meant to wake us up. People try to hide their pain. But they’re wrong. Pain is something to carry, like a radio. You feel your strength in the experience of pain. It’s all in how you carry it. That’s what matters. Pain is a feeling. Your feelings are a part of you. Your own reality. If you feel ashamed of them, and hide them, you’re letting society destroy your reality. You should stand up for your right to feel your pain.” -Jim Morrison

While he speaks of the emotional side of pain, I find these words to be quite meaningful for someone with chronic pain.  I think when we overcome our fear of truly expressing our pain, we also gain great strength.  Feel your pain.  But fight to live your life in spite of your pain!

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“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.

When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.” – Alison Lurie, The Last Resort

I find these words to be very descriptive of how most people end up acting around someone who has a chronic disease.  People try to help by sharing all the cures that have worked for someone else.  Eventually they give up.  And when they do, they don’t want your illness to be there.  They would prefer you pretending not to be ill at all.  Be just fine.  Wear that fake smile.  But don’t.  Keep talking about your illness.  The people you really want to be around will try to understand.

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Finally I want to talk just a little bit about how chronic pain can send you into that terrible dark abyss called depression.  Depression comes, I think, from being unengaged.  Our illness has, for the moment, overcome our lives and left us wondering lost in a deep, dark forest from which we can see no end.  But don’t give up!  And don’t close up completely.

“Listen to the people who love you. Believe that they are worth living for even when you don’t believe it. Seek out the memories depression takes away and project them into the future. Be brave; be strong; take your pills. Exercise because it’s good for you even if every step weighs a thousand pounds. Eat when food itself disgusts you. Reason with yourself when you have lost your reason.” – Andrew Solomon, The Noonday Demon:  An Atlas of Depression

To me, the best thing to try to do when you are depressed is simply to do something.  Anything!  Re-engage in some way.  Merlin, in the quote below advises us to learn.  That’s something we can try.  And as we do engage in something like learning, we can find a way to climb back out of the hole we have found ourselves in.

“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.” – T. H. White, The Once and Future King

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Posted in Chronic Pain and Chronic Illness, Inspirational | Tagged , , , , , , , , , , , , , , | 2 Comments

Building Awareness: What All Chronic Pain Sufferers Have In Common

Today, about two months and two weeks after my heart attack, I went back to continue the high dose IVIG (intravenous immunoglobulin G) treatments that were recommended by the doctors at the Mayo Clinic last summer.

I am just back home and feel good enough to try to knock out a real blog post.  It has been a while since I have felt like doing that.  I don’t think it can be the IVIG this fast, but perhaps getting what was for me a pretty good night’s sleep and a nap in the infusion chair has helped me achieve a level of truly beneficial rest.

I don’t want to be repetitive but for those who may be reading my blog for the first time, I suffer from chronic disease.

My primary disease is called paraneoplastic neurological syndrome. 

The name “para-neoplastic” basically describes its cause:  one meaning of “para” is “side by side” or “with” and “neoplastic” means “of or relating to a neoplasm” which is a tumor or cancer.  So, a paraneoplastic syndrome exists side by side or along with cancer.

These syndromes are marked by antibodies that are found in the blood serum.  Many have been identified but there are many more yet to be identified.  Simply put, the disease is the body’s own immune system triggered by a cancer that is now fighting vital parts of the body itself.  In my case, it seems to be focused on the central nervous system creating a lot of neuropathic pain and autonomic dysfunction.

My cancer was and is Stage 4 Melanoma.  In 2008, I had surgery to remove a malignant melanoma on my upper left thigh.  By the time of the surgery, the cancer had already spread to the lymph nodes.  In 2009, when a metastatic lesion was found, I was told that my chances at 5-year survival were about 1 in 9.  Not very good.  Later that year I was hospitalized by what was initially diagnosed as Tranverse Myelitis.  Whatever the disease, I believe that it progressed into the paraneoplastic syndrome I have now by the end of 2010.

I have also had two heart attacks, at least one TIA (mini-stroke), pulmonary emboli and pneumonia at least 4 times.

My main complaints with my chronic illness are

(1) pain that never, ever stops,

(2) neurological deficits that make it hard to walk and to properly care for myself, and

(3) brain fog or cognitive confusion that adds time to completing simple tasks – like writing this blog or posting to Facebook.

I was referred to the Mayo Clinic in 2011 and they confirmed my home neurologist’s diagnosis of the paraneoplastic syndrome but also added that I likely suffered from secondary chronic fatigue syndrome and if I didn’t have all the other problems, I would meet the criteria for a fibromyalgia diagnosis that would account for my widespread pain.

And to top it off, the treatment might be worse than the disease. 

When I first received the high dose of IVIG back in August 2014, I suffered a side effect known as aseptic meningitis.  Basically, a bad headache and a very high fever that lasted about three or four days.  And likely, the even larger dose received in October 2014 was at least a contributing cause to my second heart attack on October 27, 2014.  But there aren’t many options and most people I have consulted think this is the best shot to keep me as stable as possible for as long as possible.

Okay, enough about me.  What I want to write about today is chronic pain / chronic illness awareness.  Let me start with the following meme I found on Google:

Chronic pain awareness2

I have probably reposted this meme on my own Facebook page.  I support all of the dates on the calendar to try and spread awareness.  And I want to state emphatically that we need an effective campaign (like breast cancer awareness) to communicate to those who do not suffer from an “invisible” chronic disease what hell we go though every single day.

chronic pain is hell

But regardless of the truth of the statistic, I don’t think that saying 1/4th to 1/3rd of the US population suffers from a common illness is a message that can create credibility and understanding among the general population.  I think this kind of message only reinforces some of the stereotypes that have developed around those who suffer from “invisible” chronic diseases.   For example:

Things not to say to someone in chronic pain

Chronic pain is REAL.  I have written about it in my blog – see the post:  https://mcreyscope.com/2014/08/24/chronic-pain-its-real-and-what-can-we-do-about-it/

I will add to my prior post by saying that in my reading online and off, there seems to be two commonalities about chronic diseases that produce chronic pain:  (1) there is some kind of abnormality with the autoimmune system and (2) there is damage to the central nervous system (the brain and spinal cord taken together).

And there is one thing I have learned as I have researched these two things:  we know very, very little about each one.  I think that this explains why treatment is a guessing game and why doctors are reluctant to take on patients they don’t understand.

Long story short, I think we need to somehow build awareness around these two issues.  However, it can’t be done without somehow also building awareness and credibility about the reality of chronic pain itself.  I think I will try to put my thoughts together better and write more about this issue in the coming days, weeks, and months.

We need more research into autoimmune diseases and into how the brain and spinal cord work.

Fibromyalgia, ME/Chronic Fatigue, Headaches, Back Pain, Arthritis, Neuropathies, etc. all have things in common and those common elements need to be researched without bias. 

Even today I have read articles about research projects that sound promising until you see the findings which much too often take a psychological slant rather than the possibility of injury or other abnormalities to the autoimmune system or the central nervous system.

Please visit my Facebook page at http://www.facebook.com/mcreyscope

*****

Posted in Chronic Pain and Chronic Illness, Inspirational, Paraneoplastic Syndrome | Tagged , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Top Facebook Posts in December 2014 for McReyscope’s Musings on Chronic Illness

***Most of my time this month has had to be devoted to my Facebook page.  It was all I could do to keep up with it.  Once I did the very basics and what I had to do to keep on living, there just wasn’t any more energy left to write a blog.  Hopefully, this will not be the case in the new year.***

Since my last blog about popular posts on Facebook seemed to draw a lot of attention, I thought I would recap the most popular posts on my page in the month of December.  There were quite a few that reached out to most of the 2600+ people who are now following my page.

Here they are in no particular order.  However, there really wasn’t much statistical difference between the reach of each of these posts.

  • Kind of a sarcastic start to our hit parade:

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  • A more uplifting one that I liked quite a bit:

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  • This one surprised me.  It’s popularity really took off almost immediately after it was posted:

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  • Ain’t this one the truth?  I was glad people got the point of this post.  The pharmaceutical industry makes far too much money from the sufferers of chronic disease:

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  • We know who our true friends are.  And we are so glad that they love us for who we are:

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  • This was one of my personal favorites.  I can’t dance much anymore – really never could.  But I really liked the spunk in this post:

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  • Doesn’t everybody love Charlie Brown?  And this sentiment is really special:

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  • We are all just human.  It just happens that we suffer from a chronic illness:

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  • A funny post that took off fast.  And some of the comments were just as hilarious:

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  • I fell in love with this one as soon as I saw it.  Laughing does help the pain go away, if only for a moment or two:

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  • Our moments on Earth are so precious and so fleeting we must cherish each and every one:

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  • No surprise here.  A very perfect definition for chronic fatigue and a number of other chronic illnesses:

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  • And finally one that I am very proud of.  This post linked to one of my favorite and most popular blog entries –

https://mcreyscope.com/2014/09/12/the-stages-of-chronic-illness/

If you haven’t had a chance to read it, I hope you do.  Click on the picture to enlarge it so you can read it a little better:

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Have a very Merry Christmas!!  And a joyous New Year!!

I’ll keep trudging along posting here to my blog and to Facebook at

http://www.facebook.com/mcreyscope

and to Pinterest at

http://www.pinterest.com/mcreyscope/mcreyscopes-musings-on-chronic-illness/

So long!

Posted in Chronic Pain and Chronic Illness, Inspirational | Tagged , , , , , , , , , , | Leave a comment

Trying to Get Back to the “New Normal”: Post Heart Attack Musings

out of order

***It’s been about a month since my last post.  I haven’t really felt very good.  On some days, I’ve done a lot, but the fatigue has put me down for a couple of days thereafter.*** 

***Part of the problem seems to be blood pressure related.*** 

Here are my ten last readings:  113/80, 116/77, 109/77, 115/75, 89/57, 98/64, 105/72, 102/64, 103/60,  and 99/58.

Now some would look at these readings and say “Wow! What really good blood pressure you have!”.  And if all things were right in my world, they would be correct.  But let me put this in perspective.  For thirty plus years I have suffered from essential hypertension and have taken daily blood pressure medication just to keep it under 140/90.

My “normal” blood pressure is high, and sometimes has been very high.  These results are “abnormal” for me.  And those really low readings are very symptomatic with near syncope (passing out).

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During the first six months of this year (2014), my blood pressure was on a rollercoaster ride, both up and down, although mostly down.  Then, about mid-year I started getting consistent high readings and this lasted until my heart attack in late October.  Since then, my blood pressure readings have been in the range above.  Probably related to the dysautonomia that was diagnosed with my paraneoplastic syndrome caused by Stage IV cancer (melanoma).

***I find myself sleeping 12-14 hours per day and not ever feeling like I’ve gotten any rest.*** 

By mid-morning I start to feel completely exhausted and by early afternoon it’s overwhelming and I have to lie down for an hour or two.

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***My appetite is not normal although I eat more than I should in calorie count.*** 

I usually eat only two real meals a day.  My breakfast which is almost always Greek yogurt, fresh berries and natural granola with coffee and water.  Then, I either eat a relatively large lunch or only snack and eat a relatively large dinner.  Quantity wise they are not large, but are calorie-high because I like meat and dessert.  I have gotten away from several small meals that I did while losing weight.

strawberry english muffin

***I try to keep hydrated because my primary care physician suspects that the low blood pressure may be coming from the fact that he thinks I become dehydrated easily.*** 

I do wake up most mornings covered in sweat.  I don’t know if that fact is related to all this or not.

***When I do try to work physically on something or do any real exercise, I still get a little short of breath and afterwards my body makes me pay dearly.  Not good.*** 

My “nerve” pain is worse as is my neuro-muscular pain.  By night time, they are usually more than I can stand.  The pain may be one reason I try to sleep a lot.

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***I don’t know when or if I will re-start the IVIG treatments.*** 

They were doing some good and I think I was feeling my best in quite some time the day the heart attack struck.  My cardiologist thinks that as long as I stay on blood thinners, it would be okay.  I plan to talk at length with my neurologist at my appointment in December.

***To summarize, right now I feel worse than I have in a long time.  I have not returned to what had become my “new normal”.  I am in a lot of pain every day and the fatigue is overwhelming.***

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We’ve got a holiday tomorrow (Thanksgiving), so I will put a smile on and I will press on because one thing I am not is a quitter.  God has left me here for a purpose, and I will do my best to fulfill it.

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Posted in Chronic Pain and Chronic Illness, Heart Disease, IVIG | Tagged , , , , , , , , , , , , , , | Leave a comment

Heart Attack! A reminder of my fragile mortality!

heart_attack

It was Monday, October 27, 2014.  I woke up feeling “pretty good”.  At least good for me given my chronic illness and the various symptoms that I live through each day.  The week before I had started a new protocol for IVIG.  This was the protocol recommended by the doctors at the Mayo Clinic back in the early summer.  When I first arrived home, I told my home neurologist of their recommendations and he had already started me on his own treatment regimen after stopping the Cytoxan therapy that I had been on for about two and one half years.

The IVIG therapy was to treat a paraneoplastic neurological syndrome that was triggered by Stage IV metastatic melanoma first diagnosed in 2008 and 2009.  Since that time, I have suffered from a variety of neurological and physical symptoms that have left me totally disabled and in constant pain.

The previous week for three consecutive days (Tuesday, Wednesday and Thursday), I was given IVIG at 0.4 gram per kilogram of body weight (the Mayo protocol).  This dose was about three weeks after receiving IVIG for the third consecutive month in accordance with the protocol typically used by my home neurologist (1 gram per kilogram of body weight divided into two doses on consecutive days).

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Recent (2009) research done at Wake Forest University School of Medicine identified how the presence of cardiovascular risk factors serve as an indicator of how likely it is that a patient who receives intravenous immunoglobulin G (IVIG) treatment will have a stroke or heart attack.

Cardiovascular risk factors include coronary artery disease, cigarette use, high blood pressure, previous stroke or arterial thrombosis, diabetes and high cholesterol.  From this study, it was found that having just one or two cardiovascular risk factors does not result in a significant increase in risk for heart attack or stroke after treatment.

***But, if the patient has three or four risk factors, the chance of having a serious complication is substantially higher.***

Now, what risk factors did I have? 

  • Coronary artery disease
  • High (and/or variable) blood pressure
  • Previous arterial thrombosis
  • Previous findings of high LDL cholesterol

So, it looks like I would have had a substantially higher risk of serious complication.  This does not necessarily mean that the IVIG directly led to arterial thrombosis that caused my heart attack but it does lead one to suspect a very close association between the two events.  This potential cause/effect relationship is further bolstered by the fact that I had had a thallium cardiac stress test one week prior to the IVIG treatment that showed normal blood flow in the cardiac arteries and no reaction to the drug-induced stress during that portion of the exam.

***On that relatively good Monday, symptoms began to develop around noon.  At first, I thought that it possibly was just the overwhelming fatigue that I feel most days in the afternoon.  But it very quickly was much more than that.*** 

I had severe chest pain right on my sternum and it was getting difficult to breathe.  My wife retrieved our pulse oximeter and blood pressure machine and it was clear that my oxygenation level was low and my heart rate and blood pressure were all over the board.  I felt myself blacking out but my wife and friend kept me awake during the wait for the ambulance and EMS to arrive.  The response time was at least a full 20 minutes.  I don’t think that meets their contract requirements.  But that’s a story for another time.

When EMS arrived, they put me on the stretcher, hooked up monitors, began oxygen and started the transport.  They wanted to take me to Blount Memorial Hospital, which they said was closer, but I knew was not only further away than three other hospitals but did not have open heart surgery backup.  I instructed them to take me to Parkwest Hospital, a Top 100 Heart hospital and the closest hospital to my home.  In the ambulance, I was given aspirin and nitroglycerin and an IV was started.  The pain and other symptoms seemed to ebb and flow but never went away.  I don’t know the protocol, but the ambulance drove very slowly, observed traffic lights and stop signs and did not beat my wife and friend who drove on their own and even  stopped for gas on the way.

Upon arrival at Parkwest, things moved quickly.  Labs were done stat, another IV line was started, a heparin drip was initiated and the on-call cardiologist was right there in a matter of minutes.  His last name was “Brewer”, which happens to be the maiden name of my mother, so I suspect that we are related in some way, even if distantly.

We went straight to the Cath Lab where the finding was a 100% blockage of the left anterior descending (LAD) coronary artery (the “widow maker”).  The doctor was able to restore blood flow with balloon angioplasty.  Previous stents in that artery were intact.  Echocardiography would reveal minimal heart damage with an ejection fraction of about 50%.

I had no “out of body” experiences but I swear I saw an angel standing in the Cath Lab.  But that was after a lot of morphine and versed so it could have been a hallucination.  However, I am certain that a guardian angel was looking over me that day and saved my life.  It was not my time and God still has a purpose for me to fulfill before I leave this old world.

angel2

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Posted in Chronic Pain and Chronic Illness, Heart Disease, IVIG | Tagged , , , , , , , , , , , , , , , , , , , | 3 Comments

Baked Oatmeal

When we visiting Minnesota and the Mayo Clinic back in the early Summer, we purchased a great Amish cookbook from the Yoder family.  My wife adapted one of the recipes which we enjoy very much so I thought I would share.  Great way to eat oatmeal!

cindys baked oatmeal

Posted in Food and Diet | Tagged , , , , , | Leave a comment

10 Common Mistakes Made In Chronic Illness

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1.  Letting your disease control your life.

As long as we allow our disease to control our lives, we really don’t have a life.  It’s not easy.  In fact, it is very, very hard to do.  But we have to find a way to be in control.  Sometimes, that may just start out to be setting realistic goals and then being able to accomplish them.  With chronic disease, our lives will never be the same.  When we stop trying to go back to what was and never will be again, we will start to gain control.

2.  Taking life too seriously.

When we have chronic disease, we have to continue to enjoy life.  Our friends, our children, our grandchildren.  We can’t do everything.  But we can continue to do some of the things that bring us joy.  And it is so important to find that someone or some thing that brings a smile to our face or that makes us laugh.  When we laugh, our bodies release chemicals that can help ease our pain – if only for a little while.  The more we laugh, the longer we might find relief.

3.  Sticking with a bad doctor.

The doctor is not always right.  In fact, many are not familiar with taking care of patients with most chronic illnesses.  Therefore, we have to search out and find a doctor who not only knows our disease but also is able to effectively communicate with us.  And we should not feel guilty about changing doctors.  We need good care and it can make all the difference in the world.

4.  Not keeping a diary of symptoms to share with our doctors.

It’s is very difficult to remember what symptom was worse when.  Many chronic illnesses can have so many symptoms that without writing them down and tracking when they are worse, there is simply no way that we can communicate what is most wrong to our doctors.  So, keep a diary.  Keep track of how symptoms vary by day and by time of day.  A good written record may end up making a huge difference in finding a treatment that works.

5.  Expecting way too much from medicines.

The right medicine can help a lot.  But in the vast majority of times, medications are not going to cure us but only mask some symptoms temporarily.  Relying solely on medications to get us through the day will not help us stay in control and might only serve to give our disease the upper hand.  So be careful.  Work with your doctor to choose the right medications and only the medications you need.  I think the fewest medications possible to achieve the most benefit is the delicate balance we must have.

6.  Eating a poor diet.

Part of chronic disease is making sure that we are eating well.  We need a balanced diet that is rich in foods that help us fight inflammation – I think most chronic illnesses, if not caused by inflammation, are made much worse by it.  Fresh fruits and vegetables are essential and should be as free as possible from added chemicals.  For that matter, the best thing for us is to avoid processed foods as much as we can.  I think added chemicals have caused our immune systems to go crazy.  There are many herbs and teas that help a lot.  For most, we have to get used to eating fewer calories simply because we are less active.  And, going up and down in weight like a yo-yo only makes things worse.

7.  Failing to explore alternative treatments.

There is so much that is available to the chronic disease patient beyond traditional medicine.  And, we should all take advantage of it.  Massage, acupuncture, natural foods, essential oils, meditation, relaxation and bio-feedback have all been shown to help.  So, don’t discount other treatments.  If they do no harm, they can only help.  It’s best though to discuss them with your doctor.  Another reason to have the right doctor on board.

8.  Being isolated from friends and family.

I think this is just about the worst thing we can do when we have a chronic illness.  Maybe we feel guilty.  But we shouldn’t.  Maybe we think we are a burden.  We are not!  Maybe we feel down and think we just don’t want to be around other people.  This feeling is that darkness called depression (a clinical symptoms of chronic illness) trying to grab hold.  We have to reach out to others.  Have someone to talk to.  Be around other people.  Especially those times when we think we want to be alone.

9.  Not talking about your illness.

We have to talk to others about what we are feeling – physically and emotionally.  I say to people:  “I agree to listen to you, so you agree to listen to me.”  Don’t feel ashamed of your illness.  You didn’t do this to yourself.  But also don’t play the victim.  Remember you have to be in control.  But we have to feel comfortable talking about our illness with other people.  Sometimes that means finding other people going through the same thing we are.  I have to admit that I would have never understood the pain and despair until I got sick myself.

10.  Feeling guilty about almost everything.

Don’t feel guilty.  Again, we did not do this to ourselves.  We have to accept that we can’t do everything that we used to do.  But that doesn’t stop us from continuing to enjoy life.  There is still so much we can do.  And those who truly care for us don’t mind.  And those who don’t care, don’t matter!

Posted in Chronic Pain and Chronic Illness, Inspirational | Tagged , , , , , , , , , , , , , | 3 Comments

Third Dose of IVIG

headache and blood pressure

Well, I had my third dose of IVIG this week.  For those who may not have read previous posts, I take IVIG to treat peripheral neuropathies, pain and fatigue along with many other symptoms that are part of a paraneoplastic neurological syndrome that I have that was triggered by Stage IV melanoma.  The word “pareneoplastic” essentially means “from the tumor or neoplasm”.

Basically it is an autoimmune disorder where the body’s immune system turns on itself thinking it is fighting the cancer.  The symptoms of this chronic illness can mimic other disorders and for many, like myself, include chronic pain, fatigue and weakness much like a combination of fibromyalgia, arthritis and chronic fatigue syndrome.

IVIG stands for intravenous immunoglobulin G.  Immunoglobulin G (IgG) antibodies are found in all body fluids.  They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body.  IgG antibodies are very important in fighting bacterial and viral infections.  IgG antibodies are the only type of antibody that can cross the placenta in a pregnant woman to help protect her baby (fetus).

IVIG products are derived from the plasma of large numbers of individuals.  All donors are tested for contagious diseases including HIV, and hepatitis.  For this reason, it is an expensive treatment option and requires approval from most insurances.

During an IVIG treatment, the immunoglobulins are given intravenously.  An IV catheter is placed in the patient’s arm and the IVIG solution is dripped into the vein.  Side effects can include headache, flu-like fatigue, fever, chills and nausea.  The dosage and how fast the infusion is given impacts the intensity of the side effects.

For paraneoplastic syndromes and many other neurological diagnoses, high dose IVIG is given.  Because of the high dose, the IVIG is infused slowly and usually over the course of multiple days.  The first dose in August caused a severe side effect called “aseptic meningitis” – a kind of inflammation of the lining of the brain not caused by bacteria or virus.  It took more than a week to get over the fever and severe headache.  The last two doses have been preceded by drugs to prevent a repeat of this side effect and include Solu-medrol (methylprednisolone sodium solution), Benadryl and acetaminophen.

00000 IVIG

The second dose went much better with a headache and body aches that were severe only for about 24 hours.  After about three days, the positive effects of the medication really kicked in and I experienced ten to fourteen pretty good days.  But the medication’s effects wore off and the fourth week following treatment was pretty miserable.  Probably worse than it’s been for a long while.

This time the headache seems to be very manageable the day after receiving the second half of the dose that was given this week over two days.  I am feeling reasonably well this morning but am experiencing a lot of tingling and stinging pains over a lot of my body along with that inside kind of itching that can not be relieved by scratching.  Rather than hurting, my head has kind of an empty feeling – probably brain fog as it is rather hard to stay focused and my fingers don’t want to type what I am thinking.

out of order

During the infusion yesterday, my blood pressure shot up and stayed high throughout the entire infusion no matter how slow it went.  For the last couple of hours, the readings stayed in the 170s/90s range.  My initial blood pressure reading before the start of the infusion was 145/88.  However, at home, my blood pressure had dropped to 138/69 when I went to bed.  This morning my diastolic pressure (the bottom number) was up with a reading of 139/95.  We’ll see how that goes over the course of the day.

Over the course of the past year, my blood pressure has been quite variable and that variability has been tied to the autonomic dysfunction that has been part of my illness.  Last November, I had a pacemaker implant due to bradycardia (very slow heart rate) and during the first half of 2014, my blood pressure ran generally very low which likely contributed to some incidents of syncope (passing out) that at first were unexplained.

My hope is that we can find a dose and frequency of IVIG that helps with my symptoms and that stabilizes my condition.  I am optimistic because of the better period that I experienced for one week in August and for almost two weeks in September after the first two doses.  Anything that can help is a blessing!

I am very tired today and my brain is in kind of a fog, so I must end this post.  But I hope that this third dose of IVIG will bring some improvement in October.  We are planning a little trip next week to look at some Fall colors and enjoy the cooler weather.  I hope that I am feeling better and won’t be a drag on that trip.

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Posted in About Melanoma, Chronic Pain and Chronic Illness, IVIG, Paraneoplastic Syndrome | Tagged , , , , , , , , , , , , , , , , , , , | 2 Comments