For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Page 13 of 45

Revisiting Low-Dose Naltrexone (LDN)

November 7, 2014 / / 1 Comment

“LDN may well be the most therapeutic breakthrough in over 50 years. It provides a new method of medical treatment by mobilizing the natural defenses of one’s own immune system.” ~ David Gluck

I have previously posted at least twice about my trials with a little-known medication called low-dose naltrexone, LDN for short. You can read those previous entries HERE and HERE.

However I have decided that it is worthy of another post, because I am about three weeks into my third trial with it and I have recently learned more about the medication.

Naltrexone is a prescription medication that has historically been used in larger doses to treat alcohol dependence and opioid addictions. Since the 1980’s, some doctors have discovered that it can be used in smaller doses, hence the name LOW-dose naltrexone, to successfully treat some chronic illnesses, specifically autoimmune diseases, cancer, HIV, fibromyalgia, etc. It accomplishes this by regulating cell growth and slowing down cell proliferation. For autoimmune diseases, this cell regulation results in the immune system being reset.

LDN, at doses of 1.5-4.5mg per day, works by blocking the opioid receptors in your body for approximately four hours. The body is tricked into thinking it is not producing endorphins, specifically those called Opioid Growth Factor (OGF). The body then compensates for this by increasing production of these opioids and their receptors, producing a rebound effect.

LDN was first introduced to me in early 2013 by my integrative medicine practitioner. It has successfully been used to treat Multiple Sclerosis and Crohn’s Disease in some individuals. My practitioner thought that it may be of use in Sjögren’s syndrome. The problem is not many people have heard of it and there haven’t been many studies done on its positive effects; although there were a few studies done with Multiple Sclerosis and Crohn’s patients which showed its benefits. LDN is a very inexpensive drug and is already available as a generic preparation, so of course research studies do not get big funding from the pharmaceutical companies and the drug remains underutilized. There are some grass roots groups that have been trying to get the word out there and that is the primary reason why I decided to do another blog entry about it.

So you are probably wondering why I am trying this medication for the third time. I have actually had some good success with it, however the side effect of insomnia has been enough of a problem that it has caused me to go off of it during one of the trials. Also, the last time I was on it, I was admitted into the hospital and put on narcotic pain medication for an issue that had nothing to do with the LDN. You CANNOT take LDN while you are taking narcotic pain medications. The only possible exception to this is Tramadol which I have been able to take, only on occasion, and I try to space it four hours apart from my LDN dose.

LDN is a compounded medication. I get mine compounded by Skip’s Pharmacy in Boca Raton, Florida and it is shipped to my house. They also do a vegetarian capsule which is dairy-free. The owner, Skip Lenz, is a pharmacist who is considered an expert on the use of LDN and he is a very valuable resource. This is not a medication that all pharmacies know how to prepare in terms of fillers, etc. so do your homework on this. And do NOT get it in a slow-release form. The total cost, with shipping, runs me somewhere between $22-$28/month. Insurance does not cover it, but that is cheaper than many of my insurance co-pays.

Ideally, you should work with your doctor in regards to using LDN. But, if you want to try LDN and cannot get a doctor to prescribe it for you, you may contact Crystal Nason by email at this address: LDNDrListRequest@aol.com. Put LDN Prescribing Doctor in the subject line and tell her where you live. She has an extensive list of doctors who prescribe LDN and I have heard she is an excellent resource for this.

I am seeing a different integrative medicine practitioner now and we talked about trying the LDN again, but this time, by starting at a much lower dose and slowly increasing it to see if I can tolerate it. The previous two times, I started at 3mg I believe. This time around, I am starting at 1 mg. I am probably going to stick with that dose for another month or so. It has affected my sleep some already, but not to the extent it did before. Oftentimes the insomnia improves over time. Typically, people say that LDN should be taking between 9pm-3am so that it works on the endorphin receptors during their peak time, which is between 2-4am. This is probably the most debated topic regarding LDN…when to take it. Other experts on the topic feel that because of the mechanism of how it works, you can take it at any time of day. Because I have already started with some insomnia (I fall asleep fine, but wake up around 1 am for a while and feel wired), I am trying it in the morning. It’s too soon to tell yet if that is helping my sleep as I have had some other issues affecting my sleep this week.

What I have noticed just from being on this small dose is that my typical low level anxiety that I get from time to time is gone and in general, I feel more on an even keel. My energy level has also improved a little during the day. In the past, when on higher doses, I have seen a dramatic improvement in my pain levels and energy. And that is exactly why I am working so hard to get LDN to work for me.

The thing about LDN is this: besides the insomnia and vivid dreams, there is minimal risk and side effects to taking it. OK, you have to deal with the narcotics issue but besides that, it is a relatively convenient medication to take. No life-altering side effects like all the immunosuppressants that get thrown at us; osteoporosis, diabetes, cataracts, cancer, the list goes on and on. If you are being treated for a thyroid disorder, you need to more closely monitor your thyroid levels because as LDN regulates your immune system, your TSH levels can fluctuate  and you may need a thyroid medication adjustment. And finally, as we know, not all medications work successfully for everybody.

Because the research is limited and its not well known as a treatment for autoimmune illness in traditional western medicine, there are a lot of unknowns about the medication at this low dose, the dose timing thing being a perfect example. So if you decide to try it, you are going to have to listen to your body, do your research, and find what dose and timing works best for your body and particular illness. Don’t give up on it. There are plenty of non-prescription sleep supplements to help with the insomnia if you should need it and I believe that LDN is well worth the effort. While I don’t think it is a miracle cure, I do think it can be an important component of the treatment plan.

Plaquenil and Retinal Toxicity

November 6, 2014 / / 2 Comments

I will be honest; I consider myself a very well-informed and educated person in regards to my illness. I have often joked that I know more about Sjögren’s syndrome than most primary care doctors, and possibly more than most non-rheumatologists. My very rocky road with this illness, coupled with an innate desire for knowledge, learning and empowerment, is the foundation for being an expert patient.

However this pretty much all went to hell during my last opthalmology appointment. For a variety of reasons, I made the very scary and drastic move of leaving my rheumatologist in CT and started seeing one at Massachusetts General Hospital in Boston. It ended up being a smart move. This new rheumatologist then referred me for for two consults, one of which being to Massachusetts Eye and Ear Infirmary in Boston to see an opthalmologist who specializes in ocular immunology and ocular inflammatory disorders. Basically a fancy way of saying that he deals all the time with people who have Sjögren’s syndrome.

Despite the four hours of travel it would take me to get to Mass. Eye and Ear, I was more than OK with going for this consult. I felt like I didn’t have the best rapport with my current eye doctor and he was not offering me much in the way of effective treatments. I figured a new perspective would be good.

Again, another smart move. To start with, I immediately felt comfortable talking to him. However I found out some information about my eye condition that despite seeing two different eye doctors over the past six years, I was unaware of.

I have been taking the medication, Plaquenil, since early 2008 for Sjögren’s syndrome. It is a medication commonly used by doctors to help treat a variety of autoimmune illnesses, despite the fact it was originally marketed as an antimalarial drug. It modulates the immune system, without all the harmful side effects that can result from immunosuppressants. The one catch is that it can cause something called retinal toxicity, which is a condition which leads to vision loss and can result in blindness.

When I started Plaquenil all those years ago, I was told about the possibility of the retinal toxicity. I was also told that it almost never happens and the risk is somewhere around less than 1%. It seemed to me that the possible benefits far outweighed that tiny risk. However through the years, it didn’t seem to me that Plaquenil did a lot for me in regards to my Sjögren’s symptoms. It’s hard to know though since I have almost always been on it.

So when I saw this new eye doctor, he asked me several questions about my dose, how long I have been on it, etc. Then he told me that once you are on Plaquenil for greater than five years, your risk for retinal toxicity greatly increases, to about 10%.

10% ?!?

Now, that may not seem like a big number to you, but if someone told you you have a 1 in 10 chance of developing a condition that would affect your sight, especially with a medication that you are not sure makes all that much of a difference, trust me, you would look at things differently.

I will be honest, I was really ticked off…not at him. But for never being told about this. I have been making medication decisions without all the facts and therefore, making an uninformed decision. One that could have significant consequences.

He also went on to explain that the risk of retinal toxicity is affected not only by the amount of years on the drug, but by the dose, your weight, and your height. Toxicity is impacted by the cumulative dose of Plaquenil that you have taken in your lifetime. He also went on to explain that the every six month vision field tests I have been undergoing by my previous doctor are not the sole current recommendation for retinal toxicity screening.

What?!?

While the vision field tests can be helpful and used to be the gold standard of screening for toxicity, it was found that by the time something abnormal showed up on the vision field test, the damage has already been done. And even if you stop taking the Plaquenil that day, the damage can continue to occur even while off the Plaquenil. Also, most patients don’t notice symptoms on their own in the early stages of toxicity, which contributes to the problem.

Rather, there is a test called a SD-OCT test. It stands for Spectral-Domain Optical Coherence Tomagraphy and according to my doctor, it is more reliable in detecting early changes in the retina. According to some of the research, the ideal screening is to do SD-OCT testing along with visual field testing. You can read more about the updates 2011 screening guidelines HERE.

My point in writing all this up is not to scare anyone about Plaquenil. I know a lot of people who take it and a lot of people who have had great success with it and never want to live without it because it has helped their symptoms that much. But rather, my point is to inform you so that you are not in the situation I was in of being uninformed and making medical decisions when you do not have all the facts. Read. Learn. And educate yourself!

Hearing God

October 14, 2014 / / 0 Comments

A few weeks ago, I was going through a particularly challenging time with my health issues. I felt like I was caught in the hamster wheel of the medical world yet once again. Of course, I am always caught up in the medical world because of this chronic illness, but some times are worse than others. Usually when I am attending more than two medical appointments every week, that is a sign that the hamster wheel is going too fast. I was on and off antibiotics and larger doses of steroids for three consecutive sinus infections since May, I found out that my immune system wasn’t working properly, I was having issues with my eustachian tubes in my ears, which was causing a lot of pain and some hearing loss, and the list went on and on. I had a vacation coming up and I wasn’t even sure how I was going to pull that off….

During this time, out of the blue, I received an e-mail from the pastor of St. Paul’s Episcopal Church in Suffolk, Virginia, Rev. Keith Emerson. He had been doing an internet search on Matthew 21 from The Bible and the topic of being beaten down in life. This search brought him to a blog pot I wrote on February 26, 2012 called “Beaten Down and Other Musings.” I had been going through a particularly dark time when I had been dealing with some life-threatening medical issues including a run in with Guillain-Barre and some blood clots that were found in my lungs.

So Rev. Emerson wrote me, told me how he came upon my blog, and talked a little about the meaning of Matthew 21 and his words were profound and very timely. His words of encouragement calmed me and him mentioning that previous blog post also reminded me of how much worse things were in the past and of how strong I really am. It comforted me to know that a total stranger, somewhere in this world, took the time to care and reach out to me.

I eventually went and read Matthew 21 later that day and I also went back and read that old blog post. By doing so, I gained some perspective into my current situation.

In that moment of reading that e-mail, and in all the moments that followed, I truly believed that God was speaking to me through this stranger, in a way that was clearer to me than it had ever been before:

Keep going.
Don’t give up.
You are strong.


I did reply to his e-mail and Rev. Emerson sent me the link to his blog, the one which contains the sermon he ended up writing. He informed me about the positive effect it had on a member of his congregation. This was such a prime example of how God uses each of us in order to make a difference and how telling our stories can make an impact on the world.

I have included the sermon below. You can visit Rev. Emerson at his blog by clicking here: Check Out The Sermons

        ***************************************************************************

October 6, 2014
Beaten Down/Raised Up
Rev., Dr. Keith Emerson

The tenants seized the slaves and beat one, killed another, and stoned another.  Again the vineyard owner sent other slaves, more than the first; and they treated them in the same way.” 

Here is one of my all-time favorite stories.  It will give you a chuckle, not a laugh, but it comes back to me again and again.  A man owned a bakery that was famous for two things: fabulous, fresh-baked bread and a talking parakeet. The bird repeated almost everything the baker said.  Well, as you can imagine, the shop was very popular and at different times of the day was jammed with customers.  It was not uncommon for multiple people to shout an order at the same time.  In the face of such an onslaught the baker would insist, “One at a time!  One at a time!”  One day the unthinkable happened: the parakeet escaped out the front door of the shop.  The baker, only a step or two behind, dashed outside and spied the parakeet perched on the branch of a nearby tree where it had already attracted the attention of a huge flock of mean-spirited crows.  Dozens of birds were diving at the parakeet from all directions.  It was then that the baker heard his parakeet squawk, “One at a time! One at a time!”

I suspect each of us knows what it feels like to be that parakeet.  No one gets through life without being challenged, and my experience is that challenges don’t confront us in a nice, orderly fashion. They tend to come in bunches, don’t they?  Doesn’t the old expression ‘kick a person when he is down’ hint that challenges tend to attract more challenges, hardship seems to begat more hardship, affliction has a way of multiplying, and tough times often test us with even tougher times.  At one time or another, everyone one of us has been that parakeet in the tree. Some of us are ducking for cover right now and screaming or pleading or begging with all our might, “One at a time!  One at a time!”

Earlier this week I happened upon a blog post written a few years ago by Christine, a forty-year-old woman who lives in Massachusetts. She has been diagnosed with Sjogren’s syndrome, an autoimmune disease that attacks the glands that secrete tears and saliva.  Some time after she began to deal with this, Christine developed blood clots in her lungs.  Then she was diagnosed with Guillain-Barre syndrome, where the immune system attacks nerves and leads to profound muscle weakness.  More treatment led to head pain, nausea, and increased tremors.  Add to this dealing with health insurance, which is not easy even under the best of conditions, as well as the day to day challenges we all face (her computer crashed) and it is pretty easy to understand why Christine gave her post the title “Beaten Down.”

“My body wants to feel pretty again,” she wrote.  “It feels disfigured from the bruises and the rashes.  From the hair that is starting to fall out, from the steroids and the often pale, makeup-less face that stares back at me in the mirror… the darkened eyes that used to be so much more vibrant.   My body does not understand that it is an effort to get it clean every day right now.  Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down,” she wondered? “Will I ever be able to stoop down again without falling over or needing help to get up?  Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake?”

Some of you have been in that place, others not far from it, and surely the rest of us can sympathize with Christine and her plight.

When Jesus tells a parable he invites us, the listeners, to locate ourselves in the story.  Which person or character are you?  We may see ourselves in multiple characters, or, as our life changes, may recognized that we have shifted from one person to another.  Where do you see yourself in today’s parable of the vineyard owner and the wicked tenants?  If things are going well then you may not identify with the servants and messengers who are treated rudely, disrespected, beaten, and/or killed. But my guess is there have been times in your life when you are they and they are you.  You don’t have to have been victimized by thugs to fill their shoes.  Sometimes life itself is the thug and it hits us with more than we can handle.  As with Christine, it may be health crisis.  It might center on a relationship.  It could involve employment.  Life has lots of ways to beat us down.

When I was younger I had a problem.  I believed that life should never do me wrong.  It wasn’t like I had never been challenged.  My father died when I was twenty.  I had the girlfriend or two who broke my heart.  I had a friend or two that betrayed me.  But I was making the path for my life laying one brick at a time and it seemed that nothing could or should get in my way.  That assumption was challenged mightily after I graduated from seminary and took my first job as an assistant to the rector of a parish.  Nothing in life had prepared me to work with a person as dysfunctional as he was.  He meddled and manipulated and basically made miserable both my professional and my personal life. To make matters worse, I was completely unequipped to deal with such a person and that is a recipe for disaster.  Eventually, I was unemployed and nearly broken by the experience.

Last week I told you about a decision I had to make: keep my word and work for a church whose job offer I had accepted, or break my word and accept a new, second offer.  That dilemma came during this time of unemployment.  I hope you remember the counsel I received from priest who had welcomed me into the Episcopal Church (“What do you want your word to be worth?”) and the letter he wrote to me (“Blessed is he who giveth his word to his brother and dissappointeth him not… even though it be to his own hindrance”). You may recall I said that letter was the most powerful and formative correspondence I have ever received.

What I shared with you last week was the first part.  Today I want to read the second half, which addressed the residue I carried with me after the pain and disappointment of my first calling:

You may feel your experiences in ministry to date warrant cynical and angry responses.  The truth is that negative experience does not exist.  There is simply experience.  The Lord is with us when we use our experience to deepen our love and to strengthen our praise.  The cross was not a “negative” experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance.  I pray that you will be entirely free of the fault of resentment which will rob you of all joy and disable you as a man and therefore as a minister.  Let all clamor cease in your heart, and if that is not possible, lay that fault penitently and incessantly before God in prayer.  Resentment and self-pity are the virtuous vestments put on by unregenerate egotism for disguise. No one, of course, is deceived, except oneself. 

Congratulations on your new appointment.  Accepted with humility and offered in love, your ministry will be blessed.

Over the years the truth and wisdom of his words have been born out in my life time and again.  Life, like the ocean, is what it is. Sometimes the tide goes out, sometimes it comes in.  Some days are calm while others are rough and choppy.  There are days when everything is as you would like it to be and other days when a hidden rip current is ready to take you for a ride into the unknown (and unwanted).  More than when I was younger, I now receive moments of grace with thankfulness and humility and I am better at facing adversity with joy, faith, and patient acceptance. To quote again my friend,“The cross was not a ‘negative’ experience.  On the contrary, it is for us the ultimate witness to the power of God to evoke grace in every circumstance” and “the Lord is with us when we use our experience to deepen our love and to strengthen our praise.”   I see and sense that better now than I did years ago.

At the end of Christine’s blog post she writes this:

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment?  Or wondering how many of them had maybe felt beaten down at a different time in their lives?  A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak.  I don’t have to know all of their stories to know that those stories are there in some form or another.  Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure.  Journeys that were easier than mine and definitely journeys that were more difficult than mine.  People who were beaten down but yet rose up.  Again. And again.  And again.  Just like I will.


Her words remind me of the ancient Japanese proverb: “Fall seven times, stand up eight.”  “My strength didn’t come from lifting weights,” another person said.   “My strength came from lifting myself up every time I was knocked down.”

In the parable he told, Jesus is of course the son who is killed, as he himself one day will be crucified. He then quotes a rather obscure psalm that describes how the rejected stone becomes the cornerstone.  The message for us is straightforward: Life’s challenges and trials have a way, through the grace of God and the power of resurrection, to make us stronger, better, and more useful than we were before. We who gather here this morning are stones weathered and hewed by the experiences of life, yet witnesses to God’s grace to use every experience to evoke a working of grace.

Boston Sip For Sjögren’s

September 11, 2014 / / 0 Comments

On November 16, 2014, the Sjögren’s Syndrome Foundation (SSF) will be holding their first Boston Sip for Sjögren’s event in Cambridge, Massachusetts. Sip for Sjögren’s is a fine water tasting event which includes a reception and silent auction. Guests will have the opportunity to sample some of the finest bottled waters from around the world. Those waters fall into five different carbonation levels which include still, effervescent, light, classic, and bold. Two bottles from each level are provided on round tables throughout the room. Each water has a tasting card that provides various details about the type of water and background on its origin, etc. A short program will accompany the event. All proceeds will benefit the SSF, the only national non-profit dedicated to increasing research, awareness, and education for Sjögren’s.

This is very exciting news as this is the first time that a Sip for Sjögren’s event will be held in Massachusetts. I think it may even be the first one to take place on New England, but don’t quote me on that! I was asked to be a committee volunteer and that is what I am going to talk about here. My biggest responsibility is to secure corporate/individual sponsorship for the event, as well as obtain silent auction donations. I will describe both below:

Sponsorship Opportunities for Companies and/or Individuals:

Presenting Sponsor – $5,000

  • Logo/name to appear in association with event.
  • Opportunity to address participants at event
  • Logo/name most prominently displayed on event invitation, event program, event signage, and foundation website
  • Recognition in all event media exposure/outreach and press releases
  • Acknowledgement from the podium
  • Ten (10) complimentary tickets to event
  • Recognition in The Moisture Seekers newsletter
  • Additional opportunities discussed with SSF

Platinum Sponsor – $2,500

  • Logo/name displayed on invitation, in event program, and on event signage
  • Recognition from the podium
  • Eight (8) complimentary event tickets
  • Recognition in The Moisture Seekers

Gold Sponsor – $1,500

  • Logo displayed in event program and on event signage
  • Recognition from the podium
  • Six (6) complimentary tickets to event
Silver Sponsor – $500

  • Complimentary name displayed in event program and on event signage
  • Four (4) complimentary tickets to event.
Bronze Sponsor – $250

  • Company name displayed in event program
  • Two (2) complimentary tickets to event
To receive full benefits, presenting and platinum sponsors must confirm by September 29, 2014. All other sponsor levels must be confirmed by November 3, 2014


Silent Auction Item Ideas:

Trips/getaways
Sporting events
Gift certificates
Gift baskets
Artwork/paintings/jewelry
Lessons (cooking, music, etc.)
Concert/museum/movie/zoo tickets
Professional services such as catering, photography, massage, florist, personal trainer, etc.

Really, the sky is the limit!!

If you are interested in becoming an event sponsor or if you have a silent auction item you would like to donate, please e-mail me at cmolloy435@charter.net and I will e-mail you the necessary forms and instructions.

Stay tuned for more information on ticket purchases if you would like to attend this event on November 16th!

If you follow this blog and are a blogger yourself, please share this post with your readers. Also, I would appreciate readers sharing this blog post on your Facebook, Twitter, and other social media sites.

Thank you!!

Being Visible With An Invisible Illness

September 10, 2014 / / 2 Comments

This week is National Invisible Awareness Week and I figure it is as good a time as any to get back to writing since apparently, my last post was a month ago. I have no good excuses. Life has been busy, and I have been enjoying living it.

I won’t get into all the details about why I have been busy; some of it has been simply having fun and some of it has been being there for other people or personal obligations. Whatever the reason, the past week or two has been more of a struggle physically than I am comfortable with. That’s the thing about an invisible awareness: I struggle every single day, almost no exceptions. I have done a pretty good job at working those struggles into my life and accepting them, but the problem with that is, I appear completely fine most of the time on the outside. When in actuality, my body is falling apart bit by bit on the inside.

It’s a double-edged sword for most of living with an invisible illness. For example, I do not want to be known as or come across as a “sick person”. I try to take care not to complain too much on social media and I make a very noble effort to not cancel out on plans when I am not feeling well. However the problem with this is that people forget that I do have limitations. Because I am trying so hard to make the life I do have count for something and to not waste too many of my days, I even forget that I have limitations.

As I have written about previously, I went back to work last Spring in an attempt to get back into the nursing profession. I work in a school as a substitute school nurse and had the summer off. Once I am back to work, I absolutely have to back off on all non-work activities and watch my stress in order to avoid a flare-up in my symptoms. My experience with working thus far is that for every day I work, I need at least two days to recover. Between the joint pain, muscle pain, eye issues, fatigue, and brain fog, sometimes one day of work feels like three or four days. And to be honest, it is worth it. I enjoy being back to work that much.

That is a huge reason why I have been so busy lately; because I knew I would likely be getting called soon to go into work and I wanted to do some quality living before that happened. Not that I don’t enjoy myself the rest of the year but like I said, it needs to more limited and thought out.

So this past weekend, I knew I wasn’t doing all that great; the fatigue was overwhelming, to the point where I would cry in the car on the way home. And the fatigue felt much worse than what I’m used to and I knew something wasn’t right. But, I followed through with my commitments, had some fun along the way, and sure enough, all hell broke loose: migraines, sinus pain, ear pain, joint pain, and chills. I forced myself to go to my water aerobics class Monday morning and almost passed out. I started treating myself with decongestants, acupuncture and a neti-pot, with some relief, until my asthma acted up the worst it has in years, on Tuesday night. Two times using my rescue inhaler and I knew I was doctor bound first thing this morning.

What is wrong with me in itself is not a big deal. I have something viral (if I am not better by Friday, I go on antibiotics) that is affecting my sinuses and subsequently, my lungs, which were not moving as much air as they should be. Any type of infection always flares up my autoimmune symptoms, especially the fatigue, and it gets more complicated for me than for many other people. A steroid nasal spray and a steroid inhaler should hopefully fix me up quick. I am really hoping to stay off oral steroids as I just passed the six month mark of being off them and let me tell you, that is a rare occasion indeed. Granted, my life might be easier on them, but since I have already started to develop some minor long-term complications from them, they are a last resort.

To be honest, I wasn’t being as careful as I should have been. Not just because of my schedule, but because this time of year is ragweed season and I have a severe allergy. Despite my symptoms, I was depending on one allergy supplement (which apparently wasn’t managing things) and allergy shots, and hence the sinus/lung issues emerged. But isn’t that almost a good thing in a way? Instead of spending every day thinking, worrying, and dealing with every little physical symptom that crossed my path, me and my invisible illness were taking advantage of opportunities in a very visible world.

There is something very important I have learned from all this. Nope, it’s not about balancing your life with a chronic illness. Believe it or not, I already learned that lesson a while ago, even if I don’t get it right some of the time. I have learned that since I have to live with this illness the rest of my life, and most likely will not see a cure in my lifetime, that I have to make sure to do this one thing:

I have to live my life.
Now.

I have to take advantage of all the days where I can get out of bed more easily. I have to stop worrying about when the next big autoimmune crisis will come. I have to stop worrying about how clean my house is, especially when there is some better way to spend my precious energy. While I cannot ignore my illness, it is important for me to sometimes act “as if”…act as if I am not sick…act as if I can do anything. Because honestly, sometimes I think having this illness is more mental than physical. I see that in myself and I see it with others who battle this illness every day.

So if you are reading this and you do have some type of chronic illness, try to be more visible, Do something, anything. Educate people around you about your illness. Sit in a library and read a book rather than by yourself at home. Talk to people while you are waiting in line at the Social Security office. Take a risk and go away from home overnight without ruminating over all the “what ifs” that can happen.

If you are reading this and you do not have some type of chronic illness or health issue, I will admit, I am a bit jealous. I get especially jealous of people who are healthy physically and mentally and then don’t take advantage of their good fortune. Stop wasting time over the drama around you. Get outside. Volunteer to help those less fortunate.

Live!

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