Originally posted on Facebook on May 30, 2016, re-posted here with express permission.
This post today in a Lyme disease support group brought patients to tears. It is a beautiful tribute to his wife and a beautiful and moving way to finish Lyme Disease Awareness Month. There are many aspects of this that will resonate with patients and loved ones, and parts and pieces that will especially be helpful for those newly diagnosed, or newly entering the world of Lyme because of someone they love that is suffering.
This was to the post by Carol McAlister, introducing the words her husband so beautifully shared to day:
My husband wrote this today. I have to share it wherever I can. Please read if you or someone you love is struggling with Lyme.
This man is my heart! ❤️💚
My Lyme Experience –
Today is May 31st and is the last day of Lyme Disease Awareness Month. One of the many wonderful people that deal with this horrible disease strongly suggested to my wife, Carol McAlister, that she chronicle her battle which she has bravely done this month. So now it is my turn to express from the “other side” of this disease as her husband who watches her suffer daily. This is very hard, as an extreme introvert, to express my experience and feelings openly but I hope to, some may say selfishly, use this medium to help me deal with “my side” but also praying that it may serve to help others. At the very least maybe help educate those that still do not understand what it is and what it does – to life, family, friends and marriage.
This battle, like most, has been long and fraught with many obstacles and challenges. Our personal story is 7 years in the making and continues, continues as we are assured the seasons will change. During this time we have received no less than 10 different diagnoses from highly educated and respected medical professionals. These range from Multiple Sclerosis to Neuropathy, to Fibromyalgia, to my favorite… “psychiatric issues”. This one, in particular, angered me more than the others… From there comes uncertainty from these highly educated and respected medical professions… From there comes… Prescriptions… Because everything is “cured” with a pill, salve, liquid or therapy. These are usually very strong narcotics to help suppress the enormous amount of pain chronic Lyme patients deal with. Not on occasion, but relentless 24/7/365 pain that never goes away but can be “masked” with drugs like; hydrocodon, Lyrica, tramadol, oxycodone, Vicodin, Norco, naproxen, Morphine to name a few. These are highly addictive and on a long-term basis can do great harm.
The visits to more specialists continue with these very highly experienced and educated medical professionals. I truly believe that they want to help, but they cannot treat what they do not know, and that seems to be very hard for them to deal with… the not knowing.
Then somewhere from the outer reaches comes, that one person that has the courage to post, write, blog or scream out what they are going through. Somehow you see, read or hear this and low and behold… THIS IS YOU! You get tested, well not really tested, you get a simple blood test. The results are read by your doctor and it is negative for everything. Shoot you are healthy, so your blood says…
You at some point get another blood test but this time you have gotten wise to the “system”. You probably pay out of pocket and have a “special” test done and read by “special” doctors. In the immortal words of Gomer Pyle: Surprise, surprise, surprise… You are not healthy, so your blood says. Now the agony begins… What to do next?!
I don’t want to scare anyone with this, but the next part is possibly the hardest (in my opinion). You have a diagnosis. I have had several well-intended friends and family say “well at least you now know”. To a degree they are exactly correct, no more “Western medicine” specialists, you can stop asking your General Partitioning doctor for help. But… It is very lonely out here, out here where there is no more co-pays, no more MD’s, no more “reduced price” prescriptions. There are only Homeopath, Naturopath, Osteopath, etc. doctors. Herbs, roots, seaweed, ancient Chinese remedies, etc. in place of the prescribed pharmaceutical solutions. I once asked my wife’s Naturopath Doctor; Are you are real doctor? Did you go to a “real” school? (got the evil eye for that one) See there is a lot of education needed for both you and those that are going through this with you. By the way, yes she is a real doctor and yes she went to a “real” school.
You will want find “that place” you know the one, that promises healing for only a “small price” and what is money anyway without good health. Help your Lyme sufferer research treatments. Or at the very least listen to all of research that they are doing. I personally really suck at this, not because I don’t want to hear it, but I it is so overwhelming. Help with the decision, remember they have Lyme and you probably are aware of “Lyme brain” which takes an intelligent person and reduces them to a shell of themselves. So he or she needs your help, wants your help. And finally…
I do not know the exact stats but will reference the many stories that my wife has shared that come from blogs, FB and personal conversations she has had over the years. The disease does not only take away the person’s life, it can end friendships, strain family relationships and can end marriages (it seems to be an alarmingly high rate – again I do not have specific facts/stats but she has heard it a ton). You may ask why, well I will simply say – read the previous paragraphs, that’s why. It’s hard, it is unbelievably hard. Again the medical community does not recognize Lyme, insurance does not recognize nor authorize alternative treatment. Remember this does not exist… I know that the patients have to be wondering, at some point, am I imagining this or at least they want to wake up from this horrible nightmare. It is not unexpected that a spouse or significant other would not feel the same.
So my advice to all of you that have a loved one with Lyme… STAY.
This is real, realer than you can imagine and leaving or not believing just proves the belief that it is not real. STAY. UNDERSTAND. FIGHT. LOVE. You cannot fix it, but you can make it better by simply STAYING and FIGHTING with your loved one. It is hard, you may want to flee. You may want to “jump” off this rollercoaster. But – STAY. UNDERSTAND. FIGHT. LOVE. Life is full of wordless rhythms and you just have to find yours. It is out there, it will take time, be patient. Be on guard to not let ANYTHING, or ANYONE’S perception of what you are going through put a wedge between you. STAY. UNDERSTAND. FIGHT. LOVE. Share with those that will listen, take it from the male introvert, it will help. Not all that you share with will understand, your Lyme sufferer is probably a master at hiding it. For the people that do not see your loved one often it will appear that they are healthy, they must have found a cure. Nope, no cure here, remember they are masters at hiding because very few really believe that they are “sick”.
People will share other illnesses, even “did you try…” or “what about…” This will begin to frustrate you, even make you mad. Let it. Before you can confront your inner demons you must be able to recognize that anger, frustration & fear are all a huge part of this journey. Controlling each of these will be your goal. This is easy to write and read, and I have not gotten there yet but I will and you will too. Remember, STAY. UNDERSTAND. FIGHT. And LOVE like you have never loved before.
Our final chapter is not complete, and it is not complete for most Lyme disease sufferers. All I can say to those that do stay, hunker down it is going to be the fight of your life but you are strong, your Lyme sufferer is strong and TOGETHER you will beat this, TOGETHER you will conquer what those in the medical world think doesn’t exist. You will lose friends, you will have strained family relationships – some that may never be mended fully – but never forget to STAY. UNDERSTAND. FIGHT. LOVE. Your Lyme sufferer needs you because going it alone should NEVER be an option.
I never thought I would write something like this, and especially not this long. I don’t have many friends and fear that this will not get out to very many people. All I ask is if know someone with Lyme please forward, not that I think this will be some miraculous help but if it reaches one husband or one wife and by reading this they STAY it will be worth this extreme introvert’s fear of sharing.
To my wife, I love you and I will STAY. UNDERSTAND. FIGHT. And LOVE you till the day I die. I will never give up until we have beaten this into remission. I know you don’t believe me but YOU are my rock and I am so unbelievably proud of how you fight this for you and our family.
I pray daily for my wife and children. I pray for all you who suffer with Lyme and for those that care for Lyme sufferers. You are Superman, you are Wonder woman and with the grace of God and your determination you will succeed in whipping this!
With all my respect and admiration for what you go through daily,
Originally posted on Facebook on May 30, 2016, re-posted here with express permission.