MG Management 101

Because I have family and friends who look to this site for the latest information, I'd like to give you a brief update about what is going on with me and the management of my disease(s). As many of you know, I have been having severe neurological reactions to my IVIG treatments, so the neurologist ordered a change in brands, added some medications, and divided my treatments into weekly infusions of 25 grams of IVIG per week (vs 50 grams every two weeks) with hope of minimizing adverse reactions and stabilizing my condition so that I don't have such disparity between good days and bad. We were hoping that this change in protocol would give me more and more good days, and that my weakest times and bouts of infection would become more a thing of the past than has been the case for the last couple of years. So far, however, in the last few weeks, I have had more treatment sessions with serious adverse reactions than I have had without them. And when I use the word "adverse", I mean much more than the usual aches and pains, fatigue, nausea and headache that often accompany IVIG treatments. To tell the truth, I can deal with those side effects pretty readily and without too much alarm, and most of those types of reactions go away with time and rest. I am actually talking about some pretty scary stuff...reactions that make me dread infusion day, even though I know the IVIG is my best--my only--treatment option. Yesterday was one of those days when things went haywire, and I found myself  wondering if, in fact, I am going to be able to continue treatment at all. The good news is that I have an excellent nurse, who took very good care of me, and I made it through a very, very difficult day. We are going to continue to try, and I'm praying that eventually we will figure out why I am having such a tough time. Hopefully, as we find answers to my dilemma, it will help others who are facing the same issues. Please keep me in your prayers as you walk with me through this journey...it helps to know that people are loving me and supporting me through the toughest of days.

I had lunch with a dear friend of mine following a doctor's appointment recently, and the subject of my health came up. Ever concerned and always striving to learn, my precious friend listened intently as I shared my sadness over the loss of several members of my Myasthenia Gravis online support group family, losses that are a direct result of ignorance on the part of medical staff, caregivers/loved ones, and even the patients themselves. Lack of awareness and knowledge of the unpredictability of Myasthenia Gravis and what to do in the event of a crisis is, unfortunately, very pervasive, and can be deadly! I realize that there are many within my MG support group family that visit this blog, so there are a few things I'd like to address that I believe (and have been encouraged to share with you) are vital to our survival. Please feel free to share this article with your friends, acquaintances, family, and loved ones. It just might save your life!

First of all, "pushing through" even when severe weakness is hovering perilously close to the danger zone is never wise, yet we all seem to try to do just that. I'm not sure if it is out of guilt that we aren't who we used to be and are trying to "prove" ourselves, or if it is that we are hiding behind a facade of strength when we know we are literally crumbling inside but don't want anyone else to know how truly weak we are. Whatever the reason, we simply must learn to know our bodies...to recognize when to rest, what the danger signals are, when to go to the hospital...and then to do whatever it takes to survive! There have been a couple of people I know of who have died in their sleep. They knew they needed rest (and went to bed to get it), but they didn't recognize the gravity of their situations; the muscles that support the lungs failed them, and they simply stopped breathing.

Do you know what the warning signs are that something is very wrong and crisis is just around the corner? Does your family know what to look for, and are they aware that things can change in a matter of moments? Are you educating yourself and becoming your own best advocate as you work to manage your disease? Do you have a wallet card that will help a first responder know what to do to save your life? If you answered "No" to any of these questions, it is time to take control of managing your MG.

I have a MedicAlert bracelet that I wear at all times that has my conditions listed and a number that a first responder can call to get more detailed information about my diseases, allergies, etc. But I also have a wallet card that has two important things on it. On one side, it says:

"I have Myasthenia Gravis (MG), a disease that can make me so weak that I may have difficulty standing or speaking clearly. In addition, I may have drooping eyelids, double vision, and even difficulty breathing or swallowing. Sometimes these symptoms are mistaken for intoxication. However, if my breathing and swallowing difficulty is severe, I may be having an "MG Crisis" that warrants emergency treatment. If I appear to need help, please contact my physician, the local EMS, or hospital immediately"

And of course, the name and number of my physician and my emergency contact  is clearly listed on the card. On the other side, it has a message for first responders:

FIRST RESPONDER MANAGEMENT

Severe Respiratory Difficulty (Complaints such as shortness of breath at rest, difficulty speaking except in short sentences, anxiety, restlessness, air hunger, fatigue, and inability to lie flat):

• Maintain open airway
• Suction pooled oral secretions
• Support respirations if needed with an ambu bag or noninvasive ventilation if available. (Breathing difficulty in MG is related to diaphragmatic weakness. Oxygen is NOT helpful and may be harmful.)

Severe Swallowing Difficulty (Complaints such as choking, gagging, nasal regurgitation, inability to swallow food or medications, anxiety and restlessness):

• If actively choking, open mouth and remove any visible food particles
• Perform Heimlich maneuver if foreign body (including food) airway obstruction is suspected
• Maintain open airway
• Suction pooled oral secretions
• Keep a calm and peaceful atmosphere
• Sit patient upright if alert

I also carry a card with a list of drugs to avoid/use with caution, should I end up in an emergency room and have difficulty communicating. This is so important, as all kinds of things that are commonly prescribed...such as beta blockers, calcium channel blockers, a host of antibiotics, and many other drugs...are contraindicated with MG.

Finally, if possible, please ask your friends, family and loved ones to join you in being educated and promoting MG awareness. My husband knows when my disease is acting up because he has learned to see the signs (whether or not I have mentioned anything to him)...drooping eyelids and facial muscles, hoarseness, lack of volume in my voice, slurred speech, difficulty swallowing, shortness of breath, and severe weakness in my arms and legs...and he is super attentive and alert. He has worked hard at learning what he can so that if I ever go to bed in a weakened state, he will know to check on me through the night and should I need to go to the hospital, I know that he will be diligent to take me. 

My prayer for you is that you will be informed, prepared, and armed with the tools you need to fight the battles ahead. Yes, we are warriors, and we have an inner strength that is fierce. But we can't let stubbornness or lack of knowledge keep us from getting the help we need when we need it most. Know your body. Don't try to wait it out if you are struggling to breathe. If you wait too long, your next breath may be your last. And most of all, never, ever give up!

"I don't know how my story will end, but nowhere in the text will it ever read...'She gave up'."

'Tis the Season

Cold and flu season is officially here, and to be honest, a sense of dread comes over me right along with it. I have been struggling a lot with severe weakness lately, especially since I have had such a difficult time with severe adverse reactions to my IVIG treatments, so getting out of the house is a rare (very rare) treat. And then I hear it--sounds of coughing and sneezing pervade my world, and I begin to panic. Do I have my hand sanitizer? Should I have worn my face mask? Oh dear...do I just go home?

You know that commercial that shows what coughs and sneezes would look like were you able to see them? The commercial depicts a thick, green fog that permeates every molecule of the air around us, with no fresh, germ-free air to breathe. I totally identify with that commercial because with CVID (a primary immune deficiency) as my ever-present companion, I have no defenses against such things. Vaccines do nothing to help me (in fact, they are contraindicated in patients with the multiple autoimmune conditions I have), so the only choice I have is to avoid exposure altogether. And that means I must stay home.

I am not sure why people continue to go to the store, to work, to church, or have gatherings when they are feeling under the weather. Perhaps it is just an allergy or "sinus" as they often say. But what if it is a cold or flu, and the germs sprayed into the air via coughing or sneezing end up making a defenseless person critically ill? There are many immuno-compromised people out there--folks on chemotherapy, people with immune deficiencies, lung diseases, and autoimmune diseases of all kinds. To those of us in this situation, catching a "simple" cold or the flu can lead to pneumonia and result in a lengthy hospital stay or even worse--it could be a death sentence.

So I am pleading with you today to take care of yourself. Stay home if you are feeling under the weather. And if you and I have plans together and you are congested, coughing, sneezing, or are in any way less than healthy--let me know. I want to spend time with you--sometimes so much it hurts--but we can always reschedule for a time when we are all feeling better.

If you don't see me at church or other gatherings, please understand--it isn't that I don't want to be there. I do! But I must protect my health, and avoiding crowds during cold and flu season is one way to do that.

Won't you partner with me to make this season a healthier, happier time, especially for the many who are fighting a raging battle just to survive? On behalf of those warriors...those with Cancer, Lupus, Myasthenia Gravis, Multiple Sclerosis, Asthma, Primary Immune Deficiencies, Diabetes, and multitudes of other diseases, I pen this entry. I believe we can do this, if we work together!

May God bless you with a healthy and happy holiday season!

"Let each of you look not only to his own interests, but also to the interests of others"
~Phillipians 2:4~

'Friendship' and 'Family' are Action Words

Friendship is a comforting smile, a familiar voice
that warms the heart, and the freedom to be
the person God intended. ~Unknown~

We were driving to a doctor's appointment and passed a church with a sign out front--you know, one of those marquis-type things that display different quotes every few days. This sign said, "If you want to have friends, you must first BE one". I suppose the thought behind this was taken from the scripture found in Proverbs 18--"A man that hath friends must show himself friendly" (vs 24). I remember learning that verse as a child, and have truly taken it to heart throughout my life, doing my best to be a good friend. While my body has not cooperated due to many years of chronic illness, I still have tried to reach out, send cards, make calls, pray, and above all, love others. But somewhere along the way, I find that life has passed me by, and I spend many, many lonely days at home, unable to drive, without a word from anyone. Perhaps my illness is too difficult for many to deal with; after all, pain and weakness makes us all come face to face with our own mortality. We want to think we are invincible, but when we see someone who reflects the reality of our destructible flesh, we become uncomfortable. Or, on a more positive note, perhaps people really care, but are afraid to bother me or tire me out by calling or visiting. Regardless of the reason, I still grapple with the sadness and sense of isolation that this situation brings. And I know, because of my involvement with online support groups, that I am not alone in feeling this way.

I believe we were created to have fellowship, both with God, and with one another. My relationship with God is just that...a relationship. I know He loves me and that He cares for my every need, even those that are seemingly inconsequential to anyone else but me; because if it matters to me, it matters to Him. He has proven Himself faithful repeatedly in that regard, and I am continually blessed by His love, grace and mercy. In the same light, He knows my heart and even though He knows what I am going to say even before I speak, I talk with Him daily. Likewise, we also need relationships with one another. It is how we were designed. The Bible tells us in Genesis 2 that God saw that it wasn't good for man to be alone. So it cannot possibly be healthy to spend day after day with no contact or fellowship with anyone. If we really get down to the truth of the matter, we find that many of us who have rare and incurable diseases are often left feeling isolated and abandoned. People are dying alone and forgotten, and that is heartbreaking to me.

Every now and then, I see people organizing fund raisers for people who have been diagnosed with cancer and other serious, more well-known illnesses than Myasthenia Gravis or Lupus, gathering communities together to help with medical expenses, and I am happy for those who receive such blessings. But time after time I read about the plight of people with my diseases who are left in financial ruin with no one to rush to their aid...no bake sales, garage sales, or any other fund raisers on their behalf, in spite of the fact that their medical expenses are astronomical...even catastrophic. And beyond the financial scope of their situations, they feel abandoned by their friends, and even worse, by family. Is it because there is little awareness of our conditions? Is it because the literature that is out there is outdated and gives a false idea of the seriousness of our diseases? Or perhaps it is because we are all bone-weary of having to deal with it, so we don't. To tell you the truth, I am, quite frankly, baffled. To the depths of my soul, I ache over it.

Do you have a friend or family member that is struggling today? Do you have a moment to write them a note and drop it in the mail? Or perhaps you can offer to stop by and give them a much needed visit, even a hug or two. Scientific evidence proves that human beings thrive on meaningful touch, and health declines when touch is withheld. I read a quote recently, attributed to Heather Pryor (a minister's wife, mom of 3 and author of "Purer in Heart"), that I think is appropriate here..."A true friend reaches for your hand and touches your heart." So hug someone today. Tell them you love them. Tomorrow may be too late.

"A kind gesture can reach a wound that only compassion can heal." 
~ Steve Maraboli~

Beneath the Facade

"Are you going to hog the whole table?", he asked. Startled, and admittedly, a little offended, I turned my head to see a man standing near us, expecting an immediate answer. We were sitting in the Diamond Club Lounge--an exclusive area aboard Royal Caribbean's Navigator of the Seas for frequent cruisers who have achieved a certain "status", if you will, by being "loyal to Royal"--to relax, to read, to gather together with fellow cruisers and visit. Because this area is on deck 14, the view is spectacular. The scenic peacefulness and the camaraderie of people whom we have met that truly enjoy cruising as much as we do, draws us like a magnet. Of course it helps a great deal that I get free specialty coffee there as many times per day as I want...a truly wonderful and delicious "perk".

To be fair, the room is not very large, and it does get a bit crowded, especially before dinner. It is a little bit daunting, however, trying to maneuver my power chair, so truth be known, I suppose we were hogging the table simply because of the logistics of parking my chair. Realizing that the man was really, in his own way, simply asking to join us, Gary jumped up, rearranged the seating, and the man (who was later joined by his wife) sat down. Within moments, I realized that my first judgments of him (that he was arrogant and rude) were totally wrong and unfounded. He and his wife were delightful and interesting, and we looked forward to visiting with them every single night before dinner. In fact, we know when they are planning their next cruise, and are considering the possibility of booking ours at the same time!

I told you that story to emphasize the importance of reserving judgments about people until you get past the first impression. We are all taught that at an early age, aren't we...that first impressions are important? But honestly, they are not the end-all. Had we not been willing to see past the tough exterior and look into the heart of the man, we would have missed all that sweet fellowship we enjoyed for an entire week!

As I have mentioned before, I am a part of some online support groups. One of the things that I notice repeatedly is the perception that those of us who struggle the most--especially when we don't look like we are--are judged negatively and harshly. I have personalized plates on my car denoting our love of dance, and I plan to keep those plates. But I also have handicapped placards, which we use. I can't tell you how many times I have seen people watch us park, read our plates, then hang around as if they are the handicapped parking police until they see Gary hang the sign then get out to put my power chair together. And I hear the same story over and over again from others. It is almost as if we are supposed to be ashamed that we are using that parking spot...or even getting out of the house, for that matter! It is not easy to put on a brave front when you are constantly in pain and weakness breaks through when you least expect it to steal your ability to even hold your head up. So on the better days, we want to get out of the house that has held us hostage day after day. And that's a good thing. But it doesn't mean that we are suddenly well or that we don't need support and encouragement. It simply means it is a better day.

As a woman of faith, I believe in a God who gives me HOPE that what illness has taken away will one day return to me. And having that hope means that disease and pain will never steal away my joy. That being said, every now and again, we all need to feel like we can state what "is", and cry a little bit about it without fear of judgment or labels. After all, this is a painful, life-altering event and nothing will be the same again. I recently shared what I consider to be a true statement, taken from a meme that I saw on Facebook, which was, simply, "Chronic illness is a thief". Though a friend reprimanded me for saying it--pointing out that I am, as she described me, healthy, with energy, friends and family, thereby being robbed of nothing--I still stand by my statement. Yes, by the grace of God only, I am still alive, and I am rich in many, many ways. But I am not healthy (at last count, I have more than 20 diagnoses, several of which are life-threatening) and do not have energy despite the brave face I put on for the outside world. I am no longer able to drive, my dreams of ballroom and country/western dancing (at least for now) are over. Were it not for my IVIG treatments every 2 weeks, I would be unable to fight infection, to chew or swallow, and would struggle for each and every breath. To her credit, she also said that we don't have to give up our dreams altogether, but they can and do change, and that the challenges in life make us better and stronger people. She's right about that. I am the daughter of the Most High God--Jehovah Rapha, the God who heals. I am trusting Him to do that, and pray that I never appear to feel sorry for myself in the meantime. But the fact remains, of this I am certain: Chronic illness is a thief. How I choose to face the loss is up to me. And I choose HOPE. In light of all of this, perhaps we should all look beyond the surface, beneath the facade, and into the hearts of those around us who are suffering. We just might see something entirely different than what we expected.

I'd like to take a moment to say thank you to my support group Secret Sister, who lovingly and beautifully created the Autoimmune Warrior Caricature of me that I have posted here. It is amazing and I am proud to have it on my page.

God bless you, I love you...
Kathie Lea

"Every way of a man is right in his own eyes, but the Lord weighs the heart." (Proverbs 21:2)

Do Unto Others...

Writing about my journey with chronic illness isn't easy and I agonize over what I am to say with every entry. Perhaps I overthink things. But I want what I have written here to matter...to help...perhaps to touch a heart. Since I transferred my blog to this site, it has become more public, which is a good thing. After all, I have chosen to commit myself to openness, honesty, transparency and vulnerability. And what good is all of that if my story never reaches anyone? So here I am, knowing in my heart that I am supposed to publish an entry today, yet not quite knowing what direction in which to go. So I guess I'll just dive in and start typing...

Cruising brings joy to my days and gives me
"something special" to look forward to.

Since the muscle weakness of Myasthenia Gravis that hits me out of nowhere when I least expect it has rendered me unable to drive, I am home bound most of the time. I admit it, I spend a good deal of time on Facebook. I know it gets its share of criticism, but to me, there is a lot of positive to be said about Facebook...it is my connection to the outside world, it provides a way to stay in touch with family and friends, and affords me the opportunity to have a ministry of sorts in some online support groups made up of people like me who are chronically ill. In fact, I have made some solid friendships with a few special people whom I have never even met...bonded together through the commonalities of suffering, encouragement and support.

I've noticed on Facebook recently that there has been an increase in the number of cries for validation and acknowledgement, a surge in efforts to educate and promote awareness, and pleas for people to stop judging others who have invisible disabilities. Videos and memes abound, yet I still feel as if our voices remain unheard. People are still being criticized (sometimes shouted at) for parking in handicapped spots (even though their disabled placards are clearly in view), while others continue to hear biting comments such as "if you would get up and do more, you would feel better" (untrue), or "at least it isn't fatal" (also not true), and my favorites, "but you are looking so good, you can't possibly be sick" and "how wonderful that you have planned something to look forward to...I guess you are well now!". It is not a surprise to me that I see many in my groups that battle frustration, isolation, and depression on top of the pain, weakness and suffering they are already experiencing. The fact remains, the conditions my online support group family and I have are NOT curable! This is a lifetime sentence, if you will, and while I know it is wearisome for our family and friends to watch us struggle, it is even more so for us because we WANT to be better, to do more, to live life...and we fail more often than not. So here are five...no, six...things I think anyone with a chronic illness wants others to know. If you have a friend or family member with a chronic illness, please consider each of these requests with them in mind:

1. Please, please...stay in touch. I. love. people. I am a people person, and thrive on relationships with my family and friends. So it gets lonely when I go day after day with no contact with anyone. A quick call, a card or note, a short visit (yes, even a surprise "drop in" can light up my day...as long as you don't mind if I'm still in my pajamas!), anything to let me know that you care enough to take a moment to reach out. I have a dear friend who lives 300 miles away that sends me inspiring messages several times a week. I know that I can count on her because she is PRESENT, if not in body, in heart and spirit.
2. Don't judge my situation and dismiss the severity of my conditions based on how I look or how I feel on any given day. My illnesses do their damage on the inside and I can assure you, I am thankful I don't look as badly as I feel! Besides...it's kind of like the weather in Texas...wait around 5 minutes and everything is likely to change! The conditions I have are unpredictable and can go from barely tolerable to completely debilitating...even life-threatening...without warning.
3. Sometimes I need help, but I am not comfortable asking for it. Please feel free to offer to come over and vacuum or dust. More than likely, I will say "Yes!" because it has been far too long since I felt like doing it. A simple meal (something that can go in the freezer and be reheated when needed) can be a huge blessing, especially on infusion days. IVIG treatments, which I get every two weeks, are very difficult and I am completely wiped out afterward. I know I am not alone on this, so if you know someone that is getting treatments for their chronic illness, helping out in this way is much appreciated.
4. Understand when I have to say, "No". I love being with my family and friends, but I can't always be at functions, even though it is my heart's desire. And because I have a primary immune deficiency in addition to all my autoimmune diseases, it is dangerous for me to be around anyone who is ill. So please let me know ahead of time if anyone in your household has a cold or other illness. Sniffles for you can turn into a deadly bout of pneumonia for me if I were to catch your simple cold.
5. Stress is very detrimental to the healing process, so I try to avoid it, if at all possible. Keeping stress and drama to a minimum is really better for all of us, don't you think?
6. When I am in my wheelchair, please be respectful of my situation and address me directly when speaking to me. I may not be able to walk, but I can hear and I can speak. I find it disrespectful and insulting for someone to speak above me or around me to my husband, other family member or friend as if I am not there. I have been amazed at the number of times this has happened to me...in restaurants, stores, even on vacation. And having to fight for a place in an elevator while able-bodied people clamor on with no regard for the disabled is a whole story within itself, best left for another day. Suffice to say that kindness and preference of others goes a long way to making this world a better place in which to be.

"Do not let kindness and truth leave you; bind them around your neck, write them on the tablet of your heart" ~Proverbs 3:3~

   

On Dealing With Chronic Illness

During a recent discussion on how to deal with chronic illness, I decided to put my thoughts together and write them down. This entry was born amidst that discussion, and reflects some of the conclusions I have drawn throughout my journey of pain and sickness. Perhaps this will help some of you as you face painful situations in your life. I pray it is so.

First of all, it isn't easy to live with chronic illness. Some days, even breathing seems to take more effort than there is energy to muster. So it comes as no surprise that I feel a cloud of defeat hovering over me from time to time, and while that is understandable, I have found it to be detrimental to my health if I allow that kind of negativity to take hold and stay in place for any length of time. Am I angry? No. Perhaps I skipped that part of the grieving process, I don't know. I have grieved, to be sure...for the loss of what once was, for what seems will never be again. But to say that I am angry because it happened to me, I have to say no. I mean, after all...why NOT me? I personally believe (and this has proven true in my own life) that whether or not I understand the illness, the pain or weakness I feel at any given moment, I still can choose HOPE and have an optimistic outlook for my future. And after all, truth be known, no one is promised tomorrow.

I have also discovered that pain is a gift. William Faulkner said, "If I were to choose between pain and nothing, I would choose pain." I will admit that I have never been grateful for pain in the least. But I didn't think about those in this world that have conditions that render them unable to feel pain. So they go through life breaking limbs (and losing them), oblivious to the very thing that those of us that have nerves that function properly work so hard to avoid. Pain is a way for our bodies to tell us when something is wrong, a way for us to know that the inflammatory (and thus the healing) process has begun, a warning sign when things are not quite as they should be. I am, therefore, trying very hard to be thankful for each painful movement I make, knowing that when all is said and done, I will be better for having gone through the experience, both physically and emotionally.

In addition, I have learned that how I respond to my illness can carry over in subtle (and even not so subtle) ways to affect every one around me, even when I don't realize it. And I've also seen that how others react to my situation can affect my attitude as well. I think it's okay to be angry or frustrated or even depressed from time to time, as long as we don't harm others or linger too long in any one place. It's too easy for bitterness to take root, and living a life of bitterness is really no life at all. So...what about my attitude? Do I cry about things from time to time? Yes! I have mentioned many times that my husband and I used to be ballroom and country/western dancers, and even owned our own dance studio. So every time my husband sits by my side without a dance partner...I cry. Every time we're in a position for him to get to dance with someone and I watch from my power chair on the side lines (while loving every moment of watching him dance)...I cry. BUT...I still hold on to the notion that I WILL dance again, that I WILL be strong enough to walk on my own without falling down, that I WILL feel good once again. Until then, I will do what I can to live as normal a life as possible, to involve myself in support of others and in spreading awareness, to reach out to others that are hurting, to pray for those in my life whom I love and who are going through difficult times. Because I know what it is like to feel that way, to be afraid that nothing will ever get better. Giving up is not an option for me. I have to believe that God is turning this situation into good, not just for me, but for everyone with whom I come into contact...my family, my friends, even strangers.

And then of course, there is my husband, Gary...I talk to him about EVERYTHING. And when I get really quiet because I am too weak to talk, he knows, and responds by meeting my needs before I have to ask. I always talk about how wonderful he is, and he is...truly. But obviously he isn't perfect (gasp!), so when I read him lengthy medical articles I've found by doing internet research, or Facebook comments from my timeline, or I talk about stuff he really isn't overly interested in, his eyes glaze over and he zones out. Ha! But God love him, I guess I put him on overload, so I have to learn to cut back on some of that. But I have to say that he has taken a great interest in all my conditions and has learned a lot, so he is very supportive and knowledgeable, with a pretty keen understanding of what is going on with me, considering he doesn't have any of the conditions I have. And he is very protective. I love that about him! On the other hand, he understands that I need to be able to live. So we plan cruises and we go for drives, and even head to the mall once in a while so he can walk and I can zip through in my power chair, looking at all the cute styles in the windows.

I guess I have come to the bottom line, so to speak, on this place in which I find myself. This frustrating, confusing, difficult place where I have learned that neither my identity nor my significance lies in my health status, my career, or whether or not I am capable of doing the things "normal" people do. And I believe this to be true for each of you. We are each significant and have purpose because we are individuals, created by God. We are His masterpieces, intricately and beautifully put together, and nothing slips by Him unnoticed.

IVIG and Mestinon...the Treatment Cost Dilemma

One month's worth of IVIG solution
and infusion supplies at a billing
cost of $42,000 per month

Recently, I saw a new neurologist, whose practice is located in the town in which I live. For 2 1/2 years, we have been traveling to Houston to see my neurologist and for my Intravenous Immunoglobulin (IVIG) treatments, but the trips have become increasingly more difficult both physically and financially, so we decided to make a change. When I saw the doctor, I was terribly weak, so he increased my daily medication dosage and told me he wants me to have my treatments at his infusion clinic (I have been getting them at home since February). We are in the process of putting things in place, but my Medicare Advantage Plan coverage limits have stymied things a bit until we can come to a financially manageable agreement. Until then, I will continue to receive my treatments at home, believing that God, who has provided just what we need as we need it, will remain faithful to do so. My faith is strong, and I cling to the promises in the Bible that tell me that I have nothing to worry about, that He cares for me.

I must admit that I have struggled with this entry, having started and stopped multiple times because I do not want to come across as needy or wanting pity about my situation. I am writing because I am committed to my promise of transparency, my fight for awareness, and on behalf of all chronically ill patients who are wondering when the day will come when we will have to choose between having the necessities of life and getting the medication and treatments we need. The picture above reflects a new shipment of one month's worth of my lifeline, Intravenous Immunoglobulin (IVIG), and the supplies I need to receive my treatments at home.The cost of this treatment is exorbitant, and were it not for my home healthcare company working with me and my Medicare Advantage Plan (who is billed $42,000 every month), I would be unable to afford the treatment I now receive every two weeks. While I am grateful for the approval process that allows me access to this life saving treatment, the mounting cost of my part, along with that of my other medications, is cause for concern and stress. Because I am a part of multiple support groups, I know...and am brokenhearted with the knowledge...that I am not alone in this dilemma.

I take approximately 10 different medications (about 22-23 pills per day) for my conditions, and thankfully, the cost of most are relatively manageable. However, one of my medications, called Mestinon...the most important one, in fact, for Myasthenia Gravis patients because it helps get the message from the nerves to the muscles (including those muscles needed to breathe) to cause them to work properly...has risen astronomically in price each month for the past year to an amount nearly impossible to pay. Last month, my out of pocket cost for Mestinon alone was over $1,000, with a retail price tag of almost $3,000 for a one month's supply. The rise in cost is baffling to everyone (including pharmacists nationwide) because it is increasing at such an alarming rate. A year ago, the retail cost for Mestinon was only $600-$700 per month. Granted, there is a less expensive generic form of this medication, but for many like me, that alternative is simply not an option because our bodies do not respond to it. Having no access to the brand name and proper dosage of this vital medication puts our very lives at risk. Patient assistance programs exclude those who have any private insurance or Medicare coverage, regardless of whether or not the coverage gap causes undue financial hardship. The same is true for assistance for the cost of IVIG. If you have any insurance coverage at all, the full weight of the uncovered portion of the financial responsibility is on your shoulders alone. I contacted several private programs to inquire about financial assistance for IVIG treatments and other expensive medications, and each one I contacted had listings for specific diseases and specific medications for which donors had designated funds for financial aid. Unfortunately, neither Myasthenia Gravis nor IVIG...both of which could cause financial ruin in just a few short months...were on any of those lists.

So why am I writing about this extremely sensitive subject? I realize that I am presenting a problem with no idea of resolution outside of promoting awareness.  I guess I am asking for as many as possible to share this blog, to spread the word about Myasthenia Gravis and other autoimmune diseases; to collectively lift our voices so that someone, somewhere will help.