Saturday, May 16, 2015
Recently someone told me that I was a remarkable woman. Really? Remarkable. That's a nice comment, I think. However, I cannot claim to actually be remarkable. I saw an interesting description online today about how we get where we are in life. A teacher gives everyone a piece of paper, telling them to ball it up. Then he places a trashcan at the front of the classroom. As an illustration, he tells everyone to toss their balls into the can. Those who make it are the elite, those who will be the rich, the talented, the famous. The only rule is that the kids cannot leave their seats. So of course the ones in the back complain about fairness, the ones in the front see nothing but what is in front of them, those who are closer tend to hit the basket more often... you get the picture. So no, I'm not remarkable. But God put me in situations that use the gifts that He gave me, for His glory not mine. It is remarkable to me that He is always there, always ready to help, even after being ignored.
It is hard to feel remarkable when you marvel everyday at God's providence, at how He gives exactly what I need - but only when it is time. I am in the process of replacing important papers right now, namely our birth certificates, which we need to get our passports, which we need to get social security card replacements (any one else hearing echoes of that old song "There's a hole in the bucket, dear Liza, dear Liza?). On the way to the bank to get some certified checks, I passed a homeless man. It was a bitterly cold morning, and he was wrapped up, standing at the corner with his sign. And as I drove by, I thought about the fact that a birth certificate will probably not cross his mind in the near future. He is concerned about the next five minutes, about the next meal, the next place to lay his head. He does not have the privileges that I do - the ability to drive off to the bank for checks, to stand in line and wait for a passport, time and a warm place in which to fill out forms. He is not thinking about next year, about summer trips, about planning a Thanksgiving dinner. He lives in the moment, he lives on the edge. And he smiled as I drove by. He is remarkable.
What has been is what will be,
and what has been done is what will be done,
and there is nothing new under the sun.
Therefore if anyone is in Christ,
he is a new creation.
The old has passed away;
behold the new has come.
2 Corinthians 5:17
OK, my friends who suffer - several of you have asked me to post on how we have recovered. So, here it is... drum roll.....
THE GRABLE RECOVERY PLAN
take one pill and call me in the morning.
Just kidding. If only it were that easy! I'm sure I'll forget a few things, but I'll give it a go and try to list everything. I'd like to insert a caution here - when you are hurting, it can be very tempting to latch onto every success story and attempt to recreate it for yourself. But we are all so very different. Try one thing for a few weeks - if you see nothing change, try something else. You can always come back and try something later as you feel better also - our bodies change as we recover, so something that doesn't seem to work at first may work better as your body starts to work again. The biggest thing is this: I NEVER change more than one thing every 2 weeks. Every time I've tried that, I can never figure out what works, which thing is working... and I end up back at square one,
So, in no particular order, here is what I can think of that has helped us. Wait, that may not be helpful. I'll try to put these in order ;)
Now I want a nap!
Yes, those are sweet potatoes. We got a great deal and we love them. Yum.
Note the lower shelves rather than cabinets. I use glass bowls from Ikea as "drawers."
Best. Couch. Ever.
So, there you have it. This is how we went from this:
I'm sitting here sifting through photos, amazed at the past 3 years. I see little kids turning into teenagers and young ladies, my hair changing back to it's dark blond long state from its short dark spiky do. I see our old house, my mom's apartment, an abandoned house given to us for a time, our new house emerging from the ground, all places for us to rest our heads. I see pictures of tired white faces, swollen red eyes, sick children in bed, oxygen tanks, respiration masks.... and I smile as I see the photos change to bright eyes and healthy faces. Many photos show times which only hold a faint memory for me, days hazed over by illness and fatigue. It is just so wonderful to see more recent photos where we have emerged from our cocoons back into life again.
Yet ... looking back I can see how God gave me peace and so much strength. Our photos show parties, fun times, gifts gleaned from the darker days. They show a family that lived in the midst of strange times, but lived happily. They show kids living in an abandoned house, sleeping on air mattresses on a concrete floor, but they show those kids sleeping in warm blankets borrowed from loving church family, cuddled with stuffed animals donated by a loving organization where we volunteer. They show a family enjoying plenty in the midst of poverty. They show laughter and smiles that overshadow the pain. They show eyes rolling in response to ridiculous jokes, peering over the edges of breathing masks. They show the thrill of ecstatic children playing with their once estranged dogs in a pen in the living room.
My God never stops giving. Not ever. Dark days are just a chance for him to shine even more brightly. I hope that He grants me the grace to reflect just a little of that glory to others.
Now I'm sitting at my desk, complete with a computer. My printer sits at the side, under a scanner that I got under the most amazing circumstances (ask me). There is a bookshelf of art supplies, and another full of crisp new books for the school year. We have a table for art and another for school. My dog is asleep at my feet. That would be more than enough, but that does not begin to address the worldly items that I find around me now. Our property, which looked dark, hilly, and surrounded by rusty cars at first, is now a wide open field, free of clutter, surrounded by woods full of singing birds. It is more than double what we had before. I am looking outside from a high window, more than double the height of any windows in our old house. I have four windows in my bedroom, more than double the windows of my old bedroom. The kids have a bedroom and a playroom, and another smaller room - more than double the playspace. I have a finished attic to sew in, more than double the space for my sewing area. Our new couch is a big wrap around - more than double the size of any couch I've had in the past. I have a long driveway - more than double the length of our old one (you may see that as a negative, but I love long driveways). Chris has a shed - with an area on either side for outside storage - more than double the shed space that he's ever had before. We've never had a garage before, but ... you guessed it! Now we have a double garage. I wanted a porch - I have a screened in porch more than double the size of our old one, with a patio on each side (double patios, yep). I have a double garden - a raised garden and another one in the yard. I lost my pottery studio, and now I have one more than double the size of my old one (and as of last night, it now has a pottery wheel!!!).
I have hoped that my experiences with allergies, intolerances, mold issues, multiple chemical sensitivity, etc would allow me to help others -now I have a double chance. In the past month two families desperately needing this sort of help have come into my life. One needed three respiration masks, which I sent off in the mail today - we no longer need them. I had hoped to be partially well in a year - in double the speed (6 months), I am almost completely healed, as are my children.
I am looking at our blessings - God does promise double, but His double is so much more than we can imagine. Those things that I listed previously are just worldly. He has blessed us also with increased wisdom, peace, acceptance, and joy, just to name a few. Those mean so much that I just do not have the words to express the fullness of those blessings. I hope that our ever changing story reflects a little of His glory to you. Some days now, I feel almost blinded.
Instead of your shame you will have a double portion,
And instead of humiliation they will shout for joy over their portion.
Therefore they will possess a double portion in their land,
Everlasting joy will be theirs.
Return to the stronghold, O prisoners who have the hope;
This very day I am declaring that I will restore double to you.
The Lord restored the fortunes of Job when he prayed for his friends,
and the Lord increased all that he had twofold.
Well, long time, right? I've been working hard on getting better, and made a decision not to share again until we had been on our new treatment for six months. We started in January, so I guess time is up. I'd have to say that we are much better! I'd venture to say that the chemical sensitivity issues have cleared up by maybe 60-75%! Wow. It's been a long road.
We are still travelling the road to health of course. I'm realizing that with our genetic makeup, perhaps 75% is about tops for us :) I'll take that. And don't think I've ever given up on the 100%, of course. But with chronic issues, it's best to go with what today brings.
What have we learned over the past few months?
1. You get through the bad days on God's grace. Every time I have a day that I think I just cannot get through, God shows up big time for me. I'm generally cheerful, but there have been a couple of dark days. And every. single. time. that I have a really really dark one (not just a bad or stressful day - those I can handle), God gives me a gift.
2. Chemical sensitivity is multi-faceted. It is a physical illness. It is a genetic condition. It includes a specific sort of brain malfunction, causing the brain to over-react physically to chemicals/fragrances/mold, etc. It has to be treated from several directions at once - genetic testing, medications to help the body detox the liver, organ support for those parts of your body being attacked, allergy identification, intolerance identification, brain retraining, specific supplements, diet changes, living changes, lifestyle changes, etc. It's a long row to hoe. A very long row.
3. Genetics are ridiculously intriguing, convoluted, confusing, and marvelous. But thanks to certain tests, we now know how to better help our bodies. And we know some answers to certain questions (ie types of B12 that work for us, what sorts of supplements our bodies need since we genetically cannot make certain crucial elements that other people make, and so on). Still a long way to go with this, but my brain can only handle so much at a time.
4. Post traumatic stress syndrome. Hits at weird times for odd reasons.
5. It is amazing how little we can survive upon. And amazing how awesome it feels to have certain extras again, like a couch. And a bed. Ohhhhhh yeah. And central vacuums are the bomb. LOVE. THEM.
So, that's where I'll stop on the health update. We are doing so much better. But mostly I don't think about it. We have constant blips that tumble us down hills, but I've learned to just sit for a moment to shake off the stress of the fall, lean on God, get up, and keep on walking.
The title of this post actually comes from the group Bastille, one of my current favorites.
Are you going to age with grace?
Are you going to age without mistakes?
Are you going to age with grace?
Or only to wake and hide your face?
I just want to age with grace. I'll make mistakes, but that's ok. I make a ton of mistakes every day. Sometimes I pay big time health-wise. But again, that's ok, because I have God's grace. Here's hoping we can all age with grace.
"My grace is sufficient for you, for my power is made perfect in weakness."
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.
As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.
And he took the children in his arms, put his hands on them and blessed them.
I feel like a blessed child today. We have persevered, through no strength of our own (believe me), and today....
Today we walked into church, sat in the back pew, and worshiped.
Well, I have not done any health updates for a while - and for a good reason. We are working hard on a new treatment. I won't go into the details, but honestly, we've been concentrating so hard on it, we've not taken the time to think about our health issues! Ironic, no?
But I did want to jump into your lives for a moment to let you know that we are seeing improvement! And remember - we are seeing improvement on symptoms that doctors have addressed in 3 ways:
1. This is all in your head - here, take a few prozacs and don't call me in the morning
2. MCS doesn't exists (but why do I have a rash, swollen fingers, etc?) Let me repeat - it is not real.
3. MCS is real, you have it in a severe form, we can help symptoms but you will have this isolating disease forever, as will your children. Good luck with that.
So you see what we are dealing with. And hopefully you can imagine how excited we are at the following improvements that we've seen in the past 6 weeks:
1. Chris no longer has to shower and change clothes when he comes home from work (he was changing in the garage, running through the house and jumping into the shower before he was able to get within 5 feet of me six weeks ago)
2. We are able to drive most places with the recycle air button in the car OFF! (We've had to make sure it is always on or a fire, someone's perfume, laundry smells from houses, etc can ruin our day)
3. Eloise was able to stay in the vicinity of a campfire for several hours with no ill effects (before, this resulted in hours/days of coughing due to irritated lungs, along with multiple stomach issues)
4. We successfully went to three Targets in one day (we REALLY needed something ;)). When we came home we did not change our clothing or take showers. Exciting on several counts here - we had no reactions to the stores (and I purposefully kept breathing as we walked by the candle isle), no migraines, no stomach issues... and no extra laundry!
5. I only had to wash my new clothing once (though I did it twice to make sure) before I couldn't smell the store anymore (six weeks ago it took 12-20 washes with double rinses to make new clothing bearable)
6. Chris epoxied my pottery room floor and I was able to go in the room amid the fumes and help (six weeks ago this type of fume would result in migraines, confusion, loss of speech ability, etc)
7. I went to the dentist, had my teeth cleaned, came home, just like a regular person with no ill effects, not even a tummy ache from the toothpaste! Yeah!
8. We had a few friends over on a couple of different occasions (who are low scent but not completely non-fragranced) for several hours. We had lunch, visited, etc with no problems. I could smell soap, etc, but it did not affect me! The kids were not affected either (past visits of friends have resulted in days of symptoms, along with hours of airing out the house). Victory!
9. We returned all of my oxygen tanks, deciding that they are no longer necessary.
We are starting to work on more deeply scented objects (which takes some time, since when I start something new, I usually end up with my throat and chest closing up), but we are forging forwards. And we've been experiencing these wonderful results even in the midst of the flu (which hit us at the 4 week mark) and a new virus that is hitting us right now.
So now we are looking forward. We'd love to be able to check out library books again. And visit friends! And our big goal - we would absolutely love to take the kids to Disney World! That is somewhere that we thought we would never get to again - too many fragrances, chemicals, etc. The kids are tremendously excited, and have dug into our new treatment with gusto so that we can go on a vacation (we haven't taken a family vacation in a long long long time). All in all, we are very encouraged. So now off to the store for cold medicine ;)
"May the God of hope fill you with all joy and peace in believing so that by the power of the Holy Spirit you may abound in hope."
This is what I started to tackle yesterday. This is my art room! I've avoided it thus far - still has some move in stuff, a couple of things from our old house, triple bagged and taped shut. And, truthfully, it was too painful to walk in. This is my dream room. And I've felt so stripped of dreams. Very blessed (I still experience a huge sense of wonder when I see my house at the end of the driveway. And when I go to sleep IN MY BED!!!) (Evidently sleeping on couches, air mattresses, and concrete floors really made an impression). Anyway, I feel blessed in many many ways, but unable to dream. The future is so much in God's hands - and the past two years so unbelievable.... I have felt so much support and love. And yet, I was called to give up sooo much over the past 15 years. Health, "normal" childhoods for my kids (yeah, I know, right? That doesn't exist anyway, but you know what I mean), my intellectual skills (nothing like years of B12 deficiency, hormonal trauma from endometriosis and multiple surgeries to addle your brains - my worst year for that - I was put under anesthesia six times that I can remember in 12 months), loss of a "normal" diet, loss of friends (not many stick around)(not that I blame them), loss of my sense of control and identity, loss of house and everything that we owned (I still cannot wear my wedding rings)... I could add more, but no need. The main point is that I've been asked to give up most of what was important to me, and I was given the grace to do so. Now I'm so used to giving up, that I'm suddenly realizing that I am afraid to ask for anything. I am afraid to admit that I have needs or wants. Especially wants - that just seems selfish when I have so much. How dare I ask for anything but what has been given?
So, I have this art room. My family has moved into this house, I've tried to make sure everyone has all they need and much of what they want. My kids have an awesome playroom, slowly being restocked with toys, a bookshelf, school books (ok, so that isn't totally awesome for them, but hey, they are getting a pretty cool education), necessities, etc. My hubbie has his shed, bees, tractor, drums, music room, guitar, garage, chromebook. He has an office, but poor guy just has an empty room up there right now ;) Someday...
I have a sewing machine, so I can sew things for the kids and some curtains. I have a small box of art supplies - given to me by some very dear friends. But if you look at me, and if you know me well, you'll see that I am avoiding art (or anything else that would be considered "for me"). So, I'm back to this room again. It is not only empty, it is a mess. Look at the floor:
This is left over construction stuff. Mud, sheetrock plaster, paint. Anything that has not got a place yet ends up on the floor in here. And I walk by it like it isn't even there.
This room is such a difficult place for me. It is mine, it says that I am important, that I have a place, that I matter. This is a difficult concept for me. Most of my life, I've been asked for things - to be a good daughter, a listener, a friend, a babysitter, a student, a fixer, a doer. I think that made it easier for me to give up everything - I don't really think that I deserve it anyway! And people are very good at hammering that home. "You just don't realize how lucky you are." "Look at all your blessings." "I never had these chances." "Boy you landed on your feet, didn't you?"
I'm not sure if my point of view is just unusual, or what the deal is. I live in a world where I am constantly bowled over by what I have, by what has been given to me. I can deal with hardship better than with plenty. This mindset makes it almost impossible for me to dream right now. How could I possibly have the gall to ask for more??? I have learned so much about being content right where I am.
But, this room is a gift. It is empty right now, just like me. I don't know what will happen inside. And it is time to gracefully open my eyes and accept my gift. As a friend once said, "Quit thinking you don't deserve it and just say thank you." Here is what a gal and her paint scraper can do (with a rag and some water).
Looking better, isn't it? Like someone cares about it. It still is hard to do this, to prepare a room for who knows what. Art is something near to my soul. God speaks so clearly when I throw pots and paint canvases. (I mean this in the sense of a potter throwing pots - I do not mean that He speaks when I start hurling things, though that thought does make me smile). I have this feeling, that is growing stronger, that my pottery days are not over. I do not know how this will happen. But the feeling is growing. I feel I'm now being asked to put my very soul in His hands. Art holds my deepest dreams, makes me reveal my true self. I heard in a talk once that artists are hard to convert to Christianity, because Art is their God. That is also why so many go crazy, I think. Well, maybe that and the paint fumes. Anyway, it is very true. And once an artist meets God, and sees the Creative Force from which all art springs, well, hmmmm. I'm not very sure how to put it all in words. I could draw you a picture more easily.
Here is a last photo. I'm only half done with the floor. And then Chris will find some time to seal it for me. And then we will see. I know what I'm supposed to pray for. So I am. I've shared my fears here, but I'm not in such a scary place now. I've jumped in with both feet (which I am wont to do). Life is always less terrifying if you just take the leap and start doing the job in front of you, keeping your eyes on Christ. I'm scrubbing and preparing, though I have no idea exactly what for. What for doesn't really matter, as long as you know Who for.
"'Arise and go down to the potter's house, and there I will let you hear my words.' So I went down to the potter's house, and there he was, working at his wheel. And the vessel he was making of clay was spoiled in the potter's hand, and he reworked it into another vessel, as it seemed good to the potter to do. Then the word of the Lord came to me. 'O house of Israel, can I not do with you as this potter has done? declares the Lord. Behold, like clay in the potter's hand, so are you in my hand, O house of Israel."
Then the Lord God formed the man of dust from the ground and breathed into his nostrils the breath of life, and the man became a living creature."
I'm not sure how I could possibly ever stay discouraged. How could anyone who has my God stay down and out? I was talking with someone one day, and mentioned that every day God gives me a gift. It feels as though every day He gives me a flower. I always love getting flowers. I don't get them often, maybe 15 times or so in my life. (I think my hubbie would bring more to me, but it's a bit hard when you ride a motorcycle to work....). Anyway, I love them. And every single solitary day God gives me one. Perhaps nothing that would mean anything to someone else, but these little things mean the world to me. And sometimes He throws in a whole bouquet.
Today was a bouquet. A bouquet of plastic cats! You see, one of the things that my daughters miss the most has been their cat and dog play sets. We got them a few years ago, and they have always loved them. The dog set was still available, but nowhere could I find the cat set. And believe me, I am GOOD at surfacing the internet and finding things. And to complicate the matter, it needs to be new. So, I've been looking for over a year for this set.
Today I went to Amazon, getting ready for a birthday next month. I thought, well, maybe I'll just get the dog set and let the kids split it. I added the dog set to the cart and thought, well, just for kicks I'll check out the cat set (I've checked it for almost 18 months and it is never available, new or used). And today, there it was. Only one. And brand new, unopened, even though it is not made anymore. And it was the regular price, not even a crazy price for a rare item! There it is, a bouquet of plastic cats. Coincidence? .......
Just don't tell Eloise. We still have a month til her birthday!!!
" We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
II Corinthians 1:8-11
Backwards day! Yes, I usually start with the letter and end with the verse, but a friend sent me this and I thought it was fitting. You see, when I update this blog, I do not want those I love to be uninformed. This stuff is going on, regardless of whether I say anything or not. And yes, there is great pressure, far beyond my ability to endure. There are times when I feel as if I despaired of life itself. But I ever come across as not relying on God, as thinking He is not here, as thinking that He has made a mistake, feel free to give me a virtual slap. (I may react to a real one with a rash ;)).
I have had some friends and relations who have wondered if perhaps I have given up. If I've just accepted MCS as inevitable. Phooey on that. If you think that, go back and read my letters. Even on the really really awful, no-good, very bad days, I hope you can discern my hope and my focus. And know that I do seek healing - believe me, with a background in biology, immunology, and biotechnology, I am able to speak to and understand my doctors. And if one ever said "Just deal with it," I'd be off (and that has happened more than once). I've spent years trying to ignore my body, convinced it was just in my head. But that's no good either - then my physical issues begin to hurt those that I love. Taking care of myself and acknowledging my .... what shall we say.... handicaps? This is a way to care not only for my family, but for God's temple.
That feels a bit like boasting, to say that my body is a temple, but that's what the Bible says.
"Or do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own, for you were bought for a price. So glorify God in your body."
I Corinthians 6:19-20
I've been purchased, and I am not my own. I do fight against this condition, but the fight is not my focus. My focus is Christ, and I hope that those reading this blog can focus on Him also. Yes, I have written of terrible things. "But this happened that we might not relay on ourselves but on God, who raises the dead." Can you see this in my writing? Can you see that I want to share in order that you may celebrate with me? Christ is risen and He has won. We fight our battles daily here on earth, until the glorious day comes. But we do not fight without hope. Please do not see me as letting this thing kick me around.
My wish for you tonight is that you will see that my hope is set on Him, that he will continue to deliver me. YES I want Him to deliver me from my illness - and I pray earnestly and boldly for healing. BUT I am content in that He has already delivered me from so much anxiety, fear, and anger. And He has gifted me with amazing optimism - I have yet to wake up and see a sick person in the mirror - I just feel too blessed to consider myself ill. Help me with your prayers. And give thanks - He has already answered your prayers for strength, peace, hope, and faith. It troubles me that some believe that I am letting this thing beat me. I feel that I am not clear enough, that I am somehow failing to convey my peace as a gift, received after much striving. I am not a docile patient person. When I say that I am content, please revel in that - this has come after years of toil and battle. God has been hammering me for a long long time. Not that I'm anywhere near finished, but please know - the war has been fought and won by Christ. Give thanks for this gracious favor! Now I will do my duty until called elsewhere.
"I rejoiced in the Lord greatly that now at length you have revived your concern for me. You were indeed concerned for me, but you had no opportunity. Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me.
Yet it was kind of you to share my trouble. And you Philippians yourselves know that in the beginning of the gospel, when I left Macedonia, no church entered into partnership with me in giving and receiving, except you only. Even in Thessalonica you sent me help for my needs once and again. Not that I seek the gift, but I seek the fruit that increases to your credit. I have received full payment, and more. I am well supplied, having received from Epaphroditus the gifts you sent, a fragrant offering, a sacrifice acceptable and pleasing to God. And my God will supply every need of yours according to his riches in glory in Christ Jesus. To our God and Father be glory forever and ever. Amen."
Philippians 4: 10-13
My nine year old drew this for me as my Christmas present. I think it is fabulous! She is not doing that well - she hurts all the time, and two nights ago when I put her to bed, she looked up tearfully and said, "Mommy, I just cannot live without pain." And she is right. She cannot. Sometimes I can distract her, but I cannot fix her. Her stomach, her muscles, her joints, her feet, her head. It never never leaves her. She never gets a break. I want a new body for her so badly it makes my stomach hurt.
But this is our life. We do what we can - she has had every test known to man, it seems. Her last visit to the pediatrician resulted in 6 vials of blood being taken. They know something is wrong - but they just cannot find it. Her allergist believes we should have her genes tested, and should consider a treatment called LDA (low antigen dosing). He likes to start in the winter, so perhaps next year. It is a very difficult treatment, and can go on for a lifetime. Of course, none of this is covered by insurance. He believes that her body is suffering from toxicity right now - that for some reason she cannot get rid of the mold toxins, and probably the toxins from the Lyme's organisms also. So, we will continue our Lyme's treatment (we may see no improvement in that for 6 months), and we will start her on a drug called cholestyramine, which pulls out fat soluble toxins. Unfortunately, it also pulls out fat soluble vitamins, so we have to be careful and rotate her on and off. I've had to take it for over a year so far, and it did help me, so we are hopeful. We just did not want to take this route with a child, but those at the end of the rope can't be choosy.
My twelve year old, on a happier note, is doing very well indeed. Her thyroid is leveled out (though the doctor says we should expect a slow decline since this is an auto-immune disease). But that is an easy fix of just upping her meds when she slides. She has some sensitivities to chemicals, but it is low compared to the other gals of the family. She also has a good nose, and can tell pretty immediately if there is a dangerous chemical in the air. So she is blessed with the ability to remove herself from danger. Now she just has to learn not to people please, something that seems to be genetically engineered into this family - but she will have to learn to be able to politely excuse herself when something harmful is around. That will come in time.
As for me, I'm fine. LOL. As my doctor says, "Wow. It must be hard to look so darn healthy and be so darn sick!" I'm having very little pain (well, for me anyway. Except when fronts come through - when the weather changes, which it is doing every couple of days right now, there is nothing to do except crawl into bed. Or when I get an exposure.... ok, yes, I have a lot of pain. I just don't focus on it). I had some genetic testing done, and the verdict is back - I should be returned to sender. Enough said. My MCS is flourishing - the newest thing is that plastic grocery bags from Krogers sets off a reaction now. Ah well. Funny thing - my mom kept telling me of a friend who had a friend who had MCS and some doctor in Durham cured her. Well, she called today and guess what - it is my allergist! I asked him about it - he said there are different variations of MCS. Anyway, he wants me to do the LDA protocol also. I'm also supposed to get an oxygen tank - the only thing that has been shown to help when a severe MCS case gets an exposure. Actually, he tells me to get one every time I go (for over a year now). Arg. It's just sooo expensive, so I keep putting it off. He was pretty serious about it today though, so I guess we may have to invest. He said I'll end up in the emergency ward soon - and then I'll start reacting to everything there. Better to give myself oxygen at home. Apparently my reaction is very similar to poisoning, and cells begin to die - so oxygen can help them survive.
My doctor was quite direct with me today. He said that we will never get better (our form of MCS seems to be the type that sticks around). Ouch. He had hoped it was less serious originally, but now he's pretty convinced that we (Eloise and I) fit into the subset that will not experience recovery. Our job is to lower the toxicity in our bodies enough to be able to have some sort of interaction with a small part of society. He cautioned that this will be imperative - and said, "Quite frankly, very few people die from serious MCS. They commit suicide first." Yikes.
That just breaks my heart. There are thousands of people right now, huddled in tents, on porches, in cars. We are in contact with some who are struggling to stay alive in the freezing winter weather. They are all alone, freezing to death. Or if they are not freezing, they are wondering what will happen when the power goes out and there is nowhere safe to go. Those in houses are wondering if they will get worse - if next week or next year, they will be the ones living in a car. But wherever they are, almost all of them share one thing in common. They are alone. Is it any wonder that this lost group of society chooses to end their existence? Spouses, friends, relatives, everyone leaves in so many cases. I feel so blessed that I have my family. That I have a house. Yes, I sometimes wonder if someday I will have to leave also, but for now, we are here. But what would I do if....? Yes, these things flit through my mind. I do not dwell on them or plan for the future. That is indeed the way to despair, and I will not go there. Thank God He found me before MCS. I wrote a verse on my window, and posted it on facebook a while back. A friend commented "How bleak!" I disagree. For our life, this verse is everything.
I do love modern technology. And color - I always love playing with color. It even makes the above photo a bit more fun. That is me, today. This is what happened just from the faint fragrance that clung to my husband when he got home from the store today. First my head got itchy, then it felt like fire ants were marching over my skull, then this lovely rash jumped out. It is fading now - a quick dip in the shower, followed by Benedryl (while hubbie aired out the rooms he was in and high-tailed it outdoors). Photos like this are terrible, but they help me remember that I am not crazy. That this horrible affliction is real.
Many people with this problem commit suicide. I can completely understand that. I do not choose that path, but I can understand it. And I begin to wonder - what is really going on with those homeless people, with those who suffer from mental illness, with those who pull out a gun and start shooting, with those who kill themselves. How many of them are suffering from something like this, perhaps without even knowing it? Or perhaps they have begun to wonder if it is not in their heads. How many of them give up in despair when doctor after doctor gives them the name of a good psychiatrist? How many of them feel desolate and alone when friends and family tell them to "just deal with it," or worse yet, pretend to understand when their actions show that they do not even care enough to try understanding. How many feel abandoned when their church family implores them to pray for healing - chiding them to believe that God can heal them? How many despair when one after another, everyone in their lives melts away, leaving them alone and hurting?
Despair. Despair is when everyone is gone and you are alone. It is the dark place where that voice whispers that you deserve this, that nothing will ever change, that your life is worthless. Despair is when you have come to the end of everything - finances, strength, health. Despair is when living hurts more than anything else that you can imagine. Despair comes when death looks more beautiful than tomorrow.
Despair waits around every corner, at the end of every breath, with chemical sensitivities. He leaps out at you when you wonder what your child's life will be like with no friends. He strangles you when your whole week crumples down into simple survival as a fragrance laced chemical wafts through the air. He whispers in your ear as your friends melt away, one by one. Despair waits and takes advantage of every opportunity. He is of this world.
OK, I'm a bit tired of riding the bummer train. Because, the truth is, I faced despair several years ago. And despair kicked my behind. In fact, I sort of "tried God" as a last resort. Figured He probably wasn't real, but hey, if it was that or death, maybe just trying would be worthwhile, so I could convince myself not to give up. This was before MCS, but in the midst of the agony of constant pain and medications. And in trying out God, I found out that I was not strong enough to win. But that suddenly didn't matter because... well, it wasn't my fight to win.
I'd love to write something deep and spiritual here, but honestly, all I can say is that I had no idea that He was real. I'd heard about Him, but figured if He was real, He would change people - and the people around me when I was growing up were not changed. They said nice things but to me, actions speak louder than words. And the actions around me said that God was not real. That Christ was like knocking on wood - say you believe, just in case. And I learned in Sunday school that if you were good enough and proclaimed that you believed, that was the way to salvation. Whatever. I didn't want a God who was so little that people could say they were saved and that decided matters.
So, you could have knocked me over with a feather when God spoke in my life. That's private stuff, between Him and me, but I will say that He is real, Christ is real. I spent my life acquiring knowledge. I was salutatorian in high school, got a BS in biology, got a master's degree in Immunology with a minor in Biotechnology, and yet I missed the big picture. But you know what? That's OK. I could have said I believed and proclaimed Christ as king, but without God completely changing my heart, that would have been a road to nowhere. I can say what I want - but only the Creator God can truly change a heart.
So, back to the question of despair. I cannot fight despair. If it was me alone, dealing with this mess, I would just jump off a bridge. But I do not have to fight it. Despair will come, and sometimes mess me up a bit, but I'm God's, and no one takes anything of God's away. I'm in this world, but I don't belong to it. I will have down times, especially when my body is under attack. I admit, I have to suppress a shudder sometimes when I think of my future. More people will say well-meaning things. More people will disappear from my life. More disappointments will come. I will spend more time crying into my pillow.
But I find I cannot despair any more. I've never been to the Dead Sea, but I imagine it is something like trying to sink to the bottom in that buoyant body of water. It can't be done. I can flail around a bit, but I cannot hit the bottom anymore. God has put Himself between me and the bottom. He was willing to go down to those awful depths so that I don't have to anymore. The following verses may be very familiar to you. I've heard them many times. But let me tell you, followers of Christ who have MCS are blessed in a particular way. We live these verses every moment of every day. And the despair must always wither away in the Light which brings True Peace.
"But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted but not forsaken; struck down but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies."
II Corinthians 4:7-10
"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."
II Corinthians 4:16-18