Here is where I am at today, in the arms of my Lord. Tough night. Tough day. And He knows and cares for me always. Thank you Jesus!
So glad the Lord gave me the presence of mind to cancel a Methacholine Challenge Test today. I feel exhausted from the prospect that I could have died had I gone through with the test . . .
In the process of diagnosing asthma, a Doc orders a pulmonary function test. If your lung capacity is deficient for either the intake or exhalation of air, you may have a problem warranting treatment or at least a rescue inhaler. Since I started having severe chest pain and compression symptoms at the end of March, the LLMD ordered this test for me. I completed it about a month ago with findings suggestive of mild asthma. Hmmmm. I’ve never had breathing problems before and the onset coincidentally occurred during the stress of relocating back to my home after mold remediation. I was scared. A lot was at stake. We had spent thousands of dollars to remediate our home, much of it not covered by insurance or the gift of friends. How was I going to do after 76 days away from home? Turns out that I did o.k. initially then the noxious symptoms gradually returned. Oh well.
We have continued to narrow down and eliminate the potential triggers over these past two months so I can get well. This takes time and there have been some successes and failures alike. As long as there is an underlying Lyme Disease process (that I am not well enough yet to treat directly), I will have some sickness every day. But the bottom line is that I did not have difficulty breathing or feel like an elephant was sitting on my chest until the last week of March, 2013! The LLMD ruled out a heart attack. Then a negative lab finding for a complication of mold illness suggested that I might benefit from a particular prescription medication, not covered by insurance. I tried it and am receiving some benefit, gratefully. The chest pressure is less most of the time.
Today was an exception. I had a particularly severe reaction to our ol’ church building last night resulting in about 45-minutes of intermittent seizure attacks and marked chest symptoms. I was still pretty sore today despite taking the medication for the latter symptoms. So when hearing the risks of the Methacholine (MC) Challenge Test today including a full blown asthma attack, I got really scared. The MC progressively constricts your airway while a respiratory therapist takes measurements of your breathing. Holy cripes! If your values go down 20% then they give you Albuterol to open your airway. Well isn’t that dandy. I was given Albuterol as part of the test protocol during the Pulmonary Function Test last month and did not notice any difference in terms of breathing easier. Thankfully, I had a respiratory therapist who was willing to talk with me in detail today about the test, his experiences, my PFT findings; we agreed about the extreme likelihood that I would react negatively . . .
I feel like I stared death in the face today. If I would have reacted, it would have not only been a full blown seizure attack AGAIN, but the risk of respiratory arrest. Holy crap! Remember the cartoon I posted awhile back about feeling like a lab rat? This lab rat could have been no more. I crossed out my name on the consent form and wrote, “patient declined test.”
When I have a seizure attack with chest compression, I do not breathe for several seconds. It is by the grace of God alone that my breathing re-starts! If I try to initiate active movement, such as trying to inhale, the volitional initiation of movement triggers another seizure attack. A similar reaction happens when trying to talk or move as the attacks are occurring. Eventually I collapse and need to rest. Much time needs to pass thereafter before I can function on my own or someone else has to lift me up and begin to move me. Sometimes I can initiate fine motor movements and not gross motor movements (such as walking or bearing weight on my legs). Usually my biggest challenge is simply trying to breathe again. Hyperventilation comes first then deep breaths and labored respiration. Normal breathing is last.
O.K., does that sound like asthma to you? Perhaps some aspects of it are like asthma. I don’t think that most of it is asthma. Google it and see what you think!
So my new sport this evening is first to write until my exasperation with the complications of Lyme Disease are more on the computer screen than in my head. Sorry for you, the gentle reader and spectator. This day was a bad one. The sport of living with long term illness continues as I try to listen to the Holy Spirit and all the advisors/coaches He has sent to get through the game of life. I am crying as I write this. You the spectator have witnessed the athlete getting injured. Not only is my chest still sore but my heart is bruised as well.
I talked to my precious husband on the phone from the parking lot of the hospital this afternoon. God bless that man! I was exhausted and barely realizing the significance of my experience inside that building when his kind words soothed my soul. Steve has asthma and has had a Methacholine Challenge Test in the past. He was worried for me, praying for me. He agrees that it was too risky to complete it and ’twas better to have refused it. After we talked I still had a few errands to run, prescriptions to pick up, supplements to purchase, and of course: just a couple more plants to take home from a mom-n-pop nursery. So glad Young’s had the Sweet Marjoram I haven’t been able to find anywhere else in the area. Just saying the name, “Sweet Marjoram” makes me feel better.
Now that all of this is “off my chest” I can go do what I do best. It is dark now but that never kept me from gardening before. Besides this time it’s planting two planters and I can do that in our garage on my very cool potting bench. My husband’s son, Daniel, gave me that awesome bench 5 1/2 years ago. Love it.
Take me to the top
I don’t wanna cry no longer
Take me to the top
Can’t you see I’m getting stronger?
Take me to the top
Yes there’s room for me and others
Take me to the top
Hey that’s where we will recover!
A simple song, yes it is, written long before I knew the diagnosis of Lyme Disease and sometime after the diagnosis of fibromyalgia. How could I have known how long this journey would last nor how rich the experience would be if I just “bothered to recover.”
Yes, doing the work of recovery from any illness, addiction, loss, or heartache is a bother! It takes time, energy, resources, finances, and emotional strength. When I did it all on my own with my own determination I did get somewhere for a while. After all I was told at a very young age that I am a “very determined person.” I’ve tapped into books, self-help resources, 12-step programs, support groups, special diets, supplements, retreats, doctors, specialists, the internet, advice from others, my own creative intuition, and so on. Yup, I should have figured it all out by now if it were up to me. Just gotta keep staying positive, helping others, practicing gratitude, and memorizing a ton of slogans and following helpful inspirational wisdom from others on the journey ahead of me. Hey that’s were we will recover . . .
Well guess what? It ain’t enough! No amount of wishful thinking, earthly wisdom, and STUFF is enough to cure or figure out the consequences of living in a fallen world. This world is not perfect and everything will not be revealed or resolved by the right karma, nirvana, carpe diem, keeping my chin up, and the like. Sometimes the world simply does not make sense. I’ve heard the trouble of this world described as the influences of three forces acting against us: the world, the flesh, and Satan himself. Maybe so. Or maybe it’s a combination of them? Perhaps you would debate me on many of these points. That’s o.k. I welcome it.
You will never convince me however that this world is my home and that what I see is all there is. You will never convince me that there is no purpose to our suffering and that it will end if we just do this or that. You will never convince me that I deserve better, am entitled to more and should just set more goals to have them. Sometimes my best is to lay low, to settle where I am. You will never convince me that if I don’t act now, I will miss “the boat.” His timing is perfect now and forever. You will never convince me there is no God because he allowed this suffering to happen. Sorry. I have seen too many blessings that I would have missed or screwed up if I acted to change things in my own strength and timing. I know better than all this and you can too when you consider inviting Jesus into your heart.
So today, despite the pain and the wretched symptoms last night, the laundry will still get done. How is that? It is not by my strength that I live but by He who lives within me and this includes the gumption to fold towels! When I tanked this afternoon I chose to read The Word first and not surf the net. Why? Since He is my ultimate source of wisdom and peace I simply cannot waste my time or energy elsewhere. They are too precious these days. Then it didn’t take very many of these precious moments before my relatively small list of things to do became overwhelming. That’s when I came before the Lord’s throne of grace and He met me there. Looks like writing about Him was my most important task on the list. And if I wondered why I couldn’t do something else instead (like go to work or work on my home business), I had to let it all go to the God who holds my life in the shadow of His loving arms, His loving wings. He knows the right time for everything. He knows why all this is allowed in my life and He will be glorified in the end. My best is in the best of hands.
So me and my unfolded laundry are pretty stubborn this afternoon. Have I convinced you? I’ll get to those clean washcloths soon enough and I’ll be glad the One Who loves me and knew me before I was born got to me first today. Forget the laundry. Hey Elle, where’s your leash? Remember that walk I promised you yesterday? Bow wow.
Turns out that Graber Lumber in Spencerville, Indiana has sterilized and dyed hardwood mulch. I’d already had a headache for several hours when I decided it wouldn’t make it any worse to drive 23 minutes longer to go pick up a load. Turns out their stuff is great! It was so finely shredded that I lost hardly any of it on the road home. And that’s when temptation set in . . .
I haven’t finished re-digging the borders of our garden beds yet since my health is so inconsistent these days. My rule usually goes that I don’t purchase mulch or new plants until the Spring clean-up is completed. Well if I kept to that condition when my health is so up and down and down, I might not get the vegetables planted until June! So I do a little of this and a little of that depending on the energy expenditure and time required on any given day. Or should I say, any given night?
Gardening in the twilight is a peaceful thing. Once the smell dissipates from the DEET-laden bug spray (sorry the herbals just don’t work with me; I’m the kind of person who gets bitten through my clothing!) I move fearlessly into the night. I can’t see the spiders so they must not be there, right? My pant legs are tucked into my socks and my head and arms are usually covered too. Our German Shepherd pup stands guard on bunny watch until I can re-spray the rabbit repellant on a few key perennials. The weather is cooler plus I know my yard well enough to feel what I cannot see. Besides, this is the time of day when I feel the best.
I did make dinner for my hubby and myself and put it in the frig for later. I started washing our sheets again to try a new remediation technique for any lingering mold in hopes of preventing seizure attacks tonight. The only problem is that the heat in the dryer needed to be re-set and Steve wanted to go to bed early, before the bedding was dry and available. By the time he came to tell me about wanting to go to bed, some of the sheets were still damp and I was too dirty/mulchy to come into the house to figure out a “Plan B” for him. I simply had to keep going outside while I could go. Turns out he figured out an alternative sleeping solution and I continued my evening project: mulching in the dark!
So I gave in to temptation and finished mulching the front yard at 11:30 p.m. The lack of light didn’t bother me much and I doubt I messed it up too badly. Somehow the smell of freshly died dark brown hardwood didn’t bother me either. My headache got better. I guess it was meant to be? Yes, of course, that’s it.
There are two more flower beds and four trees that need the borders re-dug. I’ll have to get to that soon, to get the areas mulched and my truck bed emptied before the rain storm predicted for the end of the week. Lord willing, I just might be able to do it. Only problem is that most of the remaining areas are beyond the reach of any outdoor light source. I may have to bite the bullet and work during the daytime. No problem. Maybe I need some really dark sunglasses? ;J
When someone says to me, “you look good today,” I’ve decided to simply take that as a compliment. The cynical alternative would be to question the intent of the person and wonder if he or she is thinking one of the phrases in the poster above. Is he or she wondering if I am really sick if I am able fix my hair and wear make-up one day in the past week? No one sees me when I don’t feel well because I don’t leave the house! Oh well. As a friend of mine named Carol used to say, “it’s better to just leave it alone.”
When someone asks me if I’m back to work yet, I’ve decided to say that, “getting well is my full time job these days.” If the person probes further, I’ve decided to disclose that I spend 16 to 18 hours every day in health-related activities and appointments. That usually brings silence so I quickly change the subject to his or her job or other primary role in life. My husband advises me that people like to talk about themselves and usually have a great time with you if you ask a lot of questions about them. I do enjoy getting to know others so his approach works well.
When someone asks me how I am feeling, I’ve learned that a quirky response such as, “below average,” “stable,” “not as well as I’d like to,” or “I’m having a better moment” works well. I rarely feel well (or if I feel better at the moment it is likely to change within the hour!) so it’s tough to give the truth: a negative litany of symptoms that has gone on for 1 1/2 years! This crap-ola-ski is likely to continue for awhile so I’m going to pace my answers. (I told you I’m Polish right?!) I appreciate the question, acknowledge it and turn my attention to the other person. It’s pretty clear when a person cares for more information and sweet when this happens.
When I do get to share a little more of my story, I try to end it with gratitude. There is always something for which I can be grateful, for which we all can be grateful. Today was a day that stunk until about 1:35 p.m. The noxious symptoms persisted without a logical reason even after a post-treatment nap plus an additional rest period. In the afternoon I moved slowly into extensive amounts of cooking my special diet and cleaning up this or that. The sweats episodes did not diminish until later in the evening. I am however grateful for two cool things that happened today: 1) crafting an amazing baked lamb cabbage roll casserole (gluten/sugar/dairy/chemical free as well!) and 2) completing the netting and support structure for the blackberry raised bed to keep out the birdie scavengers. Cool beans. Steve and I had a sweet evening together later after finishing our respective projects today. Thank you Jesus! Lord willing, I will worship His holy name tomorrow at church . . .
Recovery from a long-term illness thang isn’t for wimps you know! Most people give up, settle for less, walk away from their faith in anything or anyone, become bitter and isolated, or worse. I choose to trust that this journey will not be wasted, that the Lord will use it for His glory if I keep Him out front, and I exercise some care in my speech and behavior. Rejoice if you see me out working in my garden! I’m probably sweating bullets, nauseated, dehydrated, and weak but getting out into the world anyways. We all know what it is like to have to carry on with life when we simply don’t feel well, don’t feel like carrying on with life. I just get it more often! Eeek.
Ahhhh. That’s better. Happy Spring y’all.
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