The "Unpost"

I decided to title this post the "UnPost". I remember when I was either in middle school or high school that a game came out called the "Ungame". Do you remember it? I think my parents had a copy. It was the game that was not really a game. I wish I could explain more about it, but to be honest, I don't think I played it more than once. I didn't think it was very fun, lol. This will be a blog post, but as far as a detailed update of all that has transpired, I am going to be kind of vague. I am sure you won't mind, but I had to put this disclaimer just in case. Plus, I thought the title would be cute! :0)

I have been debating about posting an update over the last week. Partly because I didn't know what should be included in my update (we've had lots of things transpire, but still don't know what road we will travel or the extent of what to share) and partly because it's been a rough couple weeks emotionally. However, many have asked for an update, and I know I have been stalling long enough. :)

First, as you know, I have Multiple Chemical Sensitivities (MCS). That, along with Dysautonomia, is what keeps me housebound. The last treatment round that I started on Tuesday made my sensitivities explode. I always walk around with crazy allergies and reactions to almost every chemical on the planet. However, my two doses of Zithromax (a total of 500mg) made me the sickest I have ever been. It caused me to start reacting to food (some of the 10 items I can currently eat), so much so that I had an allergic reaction that caused my throat to swell for over 10 hours. This then set-off a chain reaction in which my throat decided to randomly shut down periodically for about 3 days after that. I would be talking/drinking/eating and all of sudden I would just choke and couldn't breathe. It was something I had never experienced. I had a friend tell me that I could be experiencing esophogeal spasms or seizures. Whatever the name for it is, it was probably the worst experience of my life. Talk about sitting and just waiting for your throat to close off. However, the blessing of it was that it would only last for about 30 seconds to 1 minute. As long as I didn't panic (which was a chore sometimes), it would open back up. So, after losing so much ground with 2 small tiny doses, Brian said no more antibiotics for the time being.

Some of you might be surprised that we didn't consult a doctor before making this drastic decision. Well, I am calling my doctor tomorrow. However, both of us felt that if I did any more drugs after my first episode, that I wouldn't live to tell about it. I feel pretty strongly that we would have been right. Plus, we both feel a firm conviction that we have got to work on the MCS side of my illness as it is getting really bad. The reason why it is increasing is that in general, a person who has MCS doesn't filter toxins. So, when you add Lyme treatment into the mix your already high toxin load becomes even higher. The more bacteria that is killed, the more they release neurotoxins into your system. So, someone's body, who is already allergic to the world, becomes overloaded, and you get episodes like the one I described above.

Over the years, my husband and I have had to become our own medical researchers. After years of not finding a diagnosis and then finally being diagnosed with Lyme Disease and MCS, you become very familiar with doing your own research on what works and what does not. What I have learned about MCS and Lyme is that detox (helping your body get rid of the toxins) is a necessity. With the latest episode, now we find ourselves on a road that we didn't think we would be on for awhile. We feel it is vitally important to find a doctor that specializes in MCS and knows how to help me improve in that area while also making sure the Lyme Disease doesn't get out of hand. Once my MCS improves, I will have more choices in how to treat Lyme. Right now, I can hardly even leave my house to make it to appointments, so you can see my point.

We had thought my current doctor was going to be the answer, but as of right now, we are not sure. We are searching some other avenues that might be closer and might be able to help me a little more. I don't want to share too much right now because no decisions have been made, and also we have a couple of first appointments to get through. I will update when we feel more confident in the road we are going to take. Some roads are closer (literally) than others, but ultimately we want to go where God wants us to go. We are just praying that God makes that clear. If you could join with us in prayer, we would appreciate it.

Now, I want to address the second part of why I haven't blogged recently. As I said above, it's been tough emotionally for us. As you go through a long trial like ours, it's hard to always keep the correct or appropriate focus. You do your best to plug away especially when you don't "feel like it", but as the years go by, you start to lose the hope and joy that once filled your entire being. Oh, it's not gone all the time, it's still there. I see glimpses of it. I think it just becomes buried under the weight of the trial. Discouragement creeps in and hides getting larger and larger until one day you wake up and all you see is the ugly monster that tells you....

"your old life is gone"
"fun is of the past"
"you'll never get well"
"this isolation you feel is here to stay"

I have always been one to say to never voice those lies; however, I think too often, those that are suffering, try to paint a rosy picture, one of constant strength, encouragement, joy and hope. That is where we need and try to be, and where we are most of the time; however, sometimes the days and nights blur together and it's good to share with others your struggles.

I think it becomes the hardest around holidays and celebrations. We want so much to be involved in others' lives, enjoying the fun activities, celebrating the joys and achievements; however, for some reason God does not have us in a place where we can physically participate. So, when those feelings creep in, it's time to put mind over matter and dig into the Word. It's not an easy thing to do when you feel like yelling, screaming or bawling your eyes out, but it is the only place where you can replace sorrow with joy, despair with hope, and uncertainty with faith. Sometimes, you have to choose to think rightly when every bone in your body screams at you to do otherwise. It's these times in our lives where obedience takes on a new definition, and stubbornness is actually a good personality trait.

Tonight, Brian and I were reading a blog of a dear friend of mine. She is only 21 years old and suffers from MCS, Lyme Disease, Dysautonomia and many other things. Sound familiar?! Our symptoms and reactions are pretty much identical. God has given her a true gift in the ability to touch people's lives through words. Below is a link to her most recent post. I can relate to so much of what she has to face each day. Her attitude and perseverance are something that I look up to. I would encourage you to take the time to read it. Let it speak to your heart and let it challenge you as it did us to not be satisfied with mediocrity. We are God's vessels on earth and even when the trials come and sometimes do not seem to end on our own time table, we can choose what is right. We can choose to have the correct attitude, we can choose to not feel sorry for ourselves, and we can choose to minister to others when God tugs on our heart.

One thing that God has impressed upon our hearts is the importance of reaching out to those that are chronically ill. I would hope that we would have been a couple who would have reached out to others even if we had experienced a normal life; however, sometimes it takes going through a trial like this to really develop a heart and compassion for this type of mission. These types of individuals suffer so much and most often those that supported them and rallied around them for a couple of months, have left as the years have gone by. I want to speak for those that I know who suffer year after year battling not only the disease or condition of their affliction, but the isolation that often comes with it. You may not be able to relate to what they are going through, but just your encouragement and support will mean so much more than you could ever imagine. Again, take a bit of time to read the blog below. I hope it touches your heart as much as it touched ours. Blessings!

Infectious Optimism: Mask-Girl