Linking up today over at Emily’s for the What I Learned In March link-up
A FEW THINGS I LEARNED
There are no snakes in Ireland! Did you hear me? NO SNAKES in Ireland. I’ve always wanted to visit Ireland (if I can get over my fear of flying), so this would just be another reason to keep that on the bucket list. How could I have lived for fifty….well, a lot of years and not have picked up this bit of information. Seems that you can be an Island unto yourself (without snakes) or something like that. You can use google to learn more.
Culinary Circle frozen Pizza’s are the best in the freezer aisle. If you are in a rush and just want to throw a pizza in the oven and call it done, these are actually pretty good little pizzas. They do not have that frozen pizza taste and they have some great combinations. The crust does not taste like frozen pizza crust either – you have the option of self-rising or ultra thin. The sauce is great and they give you plenty. Toppings are not skimpy either. I’ve been keeping a few of these on hand for those nights I don’t want to cook. Just add a salad. Our local grocer has had them on sale two for ten this winter, so even the price is great. (I know that homemade fresh is always better and healthier, but I don’t always have the energy for all that.)
Politics sometimes brings out the worst in me. Especially this year. I may or may not have made a few comments on facebook earlier in the election season. Then, one day I commented on a friends post in a way that was opposite than her opinion (ok to have differing opinions). I later realized that maybe I was getting a little too into proving my points and it wasn’t worth it. Sanity and friends are way more important than politics. I’ve pretty much ignored everything since then. I still have opinions and may even feel the need to express them in future, but I’ll do my best to behave and keep my comments to my page and not interrupt another’s feed. I don’t watch much news these days either. I breathe better that way.
Alisan Porter is my new favorite singer -see my comments below under What we’re watching on TV (The Voice)
Yoga pants are the bomb diggity. Well, maybe not all that, but they are the pants I didn’t know I needed. Let’s face it I’m a fat girl and so leggings and such are not things I’m going to look good wearing, or be seen in public wearing. However, yoga pants are not all that bad. They actually hang better on me and show less lumps than the other, around the house, pants I was wearing (even my husband said so). I bought them for the gym. I haven’t worn them to the gym yet due to gout flare-ups, but wearing them around the house felt great. I still don’t think I’d wear them out shopping or around town, but to the gym with a longish shirt I can handle. I bought the Danskin plus size relaxed fit – they are very roomy and comfortable. In fact, they are almost too big- if I ever make it back to the gym I can probably be down a size in no time…
What I’m currently reading: Roots and Sky by Christie Purifoy; Girl Meets Change by Kristen Strong; Simply Tuesday by Emily P. Freeman; A Writer’s Book of Days by Judy Reeves; Simplify Your Life by Elaine St. James.
On the radar to begin reading: Call To Spiritual Reformation by D.A. Carson; Orthodoxy by G.K. Chesterton (I barely started this one a while back and laid it aside, so need to bet back to it.); The Great Divorce by C.S Lewis I also have several books on my Amazon Wish list.
What I’m coloring: The casual Artist by Sheryl Lee; Romantic Country by Eriy
New favorite magazine: the Cottage journal (borrowed from my cousin, need to subscribe)
TV SHOWS WE ARE WATCHING
The Voice – we haven’t watched this one in a while, but recently started this season. Remember the movie Curly Sue? We watched it a few weeks ago and then the very next week we saw her blind audition on Youtube and decided we needed to keep up with her. The girl can sing. I can’t even. I think she can win it. Hoping.
Blue Bloods – Tom Selleck – a classic that gets better with age – what more can I say. I love this show. It has the right balance of drama and family dynamics. I love that they gather around the table as a family on Sunday and I love that they pray and are not afraid to mention faith.
The Good Wife – I’d heard some hype about this show, but never watched it. Sometime last year it was free on Amazon Prime so we started from the beginning and watched it until we caught up. Overall it has been a good show. There are some plots I could have lived without, but the overall storyline has been pretty good. I’m thankful this is the last season. I like to finish what I start, but it is time for this one to be laid to rest.
Quantico – this is a new show and I’ve loved the intrigue, but it’s getting old already. I think I’d be happy if they wrapped it up and it was a one and done. I want to know who is behind the attacks, but they have dragged it out long enough. I’m not sure I can see them sustaining this one beyond one or two seasons.
I’m holding steady for the most part.
I have started using a CPAP machine for Sleep Apnea. This has been a love / hate relationship. Overall I think it may be giving me more energy and flexibility. My shortness of breath seems better and I’m not noticing as much numbness in my fingers and toes. Probably because I’m getting more oxygen while I’m sleeping.
The gout is another issue – elevated uric acid levels. Both my PCP and Rheumatologist want me to start Allopurinol. I don’t really want to as I don’t like the side effects.
I’ve been drinking a lemon / tart cherry juice concoction every morning. It is good for gout. It is helping with the stiffness and as an added bonus I don’t feel as bloated.
I’m considering trying the AIP diet.
My inflammation was slightly improved, which means the Plaquenil is doing it’s job.
Still trying to figure out how to live with MCTD, but I know that God is in control.
WHAT MY MOTHER SAID
If you’ve been reading here awhile, then you know my mother has Alzheimer’s. I see more and more every day how she is slipping away, but she still has such a sense of humor and a zest for life about her. She loves to talk about Jesus and how he is here with us. She also loves to tease and laugh. One day recently we were sitting in my living room chatting and I was in one of my silly moods. I was humming and singing – nonsense mostly. In the middle of one of my upward progressions (totally a music term (not), my mom looked over at me and blurted out, “Break it down, girl!” Priceless. I do love that mother of mine.
Breaking it down in grace,
As you can well imagine, or maybe you know from your experiences, dealing with illness is not an easy thing. There is a lot of uncertainty and waiting. I’m not going to lie or pretend to have it all together – it is scary to be faced with tests and a chronic diagnosis that has so many unknowns. Some days it backs me up against a wall, and I’m frozen, unable to move or think straight.
Faith is hard fought and trusting God’s plan feels shaky.
Even when I waver, I know God is God, and I know he is sovereign. I know he walks ahead of me on the path seeing what I don’t see. I know he is with me even when he seems far away. And, I know that I need to keep moving forward doing the next thing. I can’t get lost in what if’s and neither can I bury my head in the sand refusing to acknowledge the realities. It is a fine line that requires the balance of a tightrope walker.
Faith is hard fought and trusting God’s plan feels shaky.
But, faith as small as a mustard seed moves mountains and God’s plan is sure.
Slowly, but surely I’m learning to trust his plan. He has been teaching me ways to travel:
This list is a work in progress, but it is a good reminder to keep me focused on the big picture. The Mixed Connective Tissue Disease (MCTD) is just one part of my life, and while I want to respect it, I don’t want it to be the boss of me. I never want to forget that God is the author of my story. Even in my mustard seed faith, his plan is sure.
Linking up with Emily and others over at Chatting at the Sky for What we Learned in January.
Learning in grace,
Today’s post is part three in a four-part series about my recent health journey. What started out as one post, morphed into an impromptu series. If you want to read them in sequence you can find Part 1 here and Part 2 here.
In the fall of 2014 I went through my usual fall depression, except several months later, the realization hit, that I hadn’t bounced back like usual. In fact, I was falling deeper into depression and my stress levels were at the screaming point. I had an impending sense of doom. I knew I felt horrible and had such extreme fatigue that many days getting out of bed was just too much. Crying seemed like a good option much of the time. I didn’t want to go anywhere or do anything. I felt guilty for all the things I wasn’t doing and all the people I thought I was letting down. I was afraid to go to the doctor because I was afraid I’d find out I was going to die. I didn’t want to die; I wanted to live. But, I wanted to live well, not tired and cranky.
The stretch of time between Thanksgiving and Christmas was especially stressful for me, and I ended up with lower back pain so severe I could barely get around. When it didn’t go away, I knew I needed to see a doctor. My husband went with me and between the two of us, we managed to tell him all the symptoms I had been having. He immediately started ordering blood work and sent me for an MRI. Thankfully my back got better, and the MRI only showed mild to moderate Osteoarthritis. But, the blood work showed some possible Autoimmune issues, so I was sent to a Rheumatologist, thus beginning a several month journey that led to a diagnosis of Fibromyalgia, and eventually Mixed Connective Tissue Disease (MCTD) in August of 2015.
I went into denial for a couple of months, and the depression continued. On the one hand, it was a relief to know that all my symptoms had a reason, and I wasn’t a hypochondriac or lazy. On the other hand, to know that your body is attacking you and a simple nap won’t cure you, is disconcerting to say the least. About the time I was starting to make peace with the MCTD and decided that I should just stay away from researching the disease on the internet (too many scary possibilities), I started having more than my usual shortness of breath. Because of the MCTD, there was a possibility that I could be developing Pulmonary Hypertension. To me, this would almost be like hearing a death sentence as it can be very aggressive and depending on how far advanced can significantly shorten your lifespan.
My doctor felt that a CT scan of my lungs was in order as well as an echocardiogram and a pulmonary function test. The CT and the Echocardiogram were both relatively standard. The CT showed a possible enlargement of my thyroid and a nodule, so I had to have an ultrasound, which showed that I did, in fact, have three nodules, one of which was larger than the standard and required a biopsy. The results came back benign, no sign of cancer. I am very Thankful and praising God for that piece of good news. He is good. But, I need to say, if the diagnosis had been cancer, he would still be good. I had already told him I’d still praise him if I had to go through cancer on top of everything else. I’m just thankful that I don’t have to fight that journey.
The echocardiogram showed mild pulmonary hypertension so next on my journey was a visit to a cardiologist who seemed to think, based on my weight, that my findings were not too unusual. He wants to follow-up in a year. I am trusting that the numbers will be better in a year and not worse as that would not be good. There is also the possibility that the lung function is a result of the pneumonia I had back in 2011 and not the MCTD. It is crucial going forward to keep watch as I don’t want worsening symptoms. Also, the cardiologist seemed to think I should have a sleep study to rule out sleep apnea, so that is next on the medical to do list that seems to keep growing. Have I mentioned yet that I am so over Doctor appointments?
The cardiologist also strongly suggested that I need to lose weight. So, this year, with God’s help, I am going to do my best to eat healthier and exercise. The exercise has been problematic, because every time I try to start walking, I end up with foot pain in one or the other. I tend to have Plantar Fasciitis and Gout flare-ups (getting over one now). I have signed up for the Silver Sneakers exercise class at the gym. I’m hoping that will be low impact and will get me into a routine. I would just like to note, that I am not quite the Silver Sneaker age yet, 🙂 but I’ll be in good company.
When I saw my Rheumatologist in August she started mentioning medications, but I didn’t want to start new drugs, and she said we’d wait on the bloodwork. When she called me a couple of weeks later to tell me that she was officially diagnosing MCTD, she wanted me to start on Hydroxychloroquine (Plaquenil), which is an anti-malaria drug. It is supposed to build up my immune system and will help with the pain somewhat. It should also help lower my inflammation. It is easily tolerated, but can cause damage to the retina, so I will have to have my eyes examined often to make sure there is no damage. So far, it seems to be helping. After a couple of months on the medication, I noticed that I was having a few more good energy days and less pain. I go back in February to have everything tested again. So far, I’m not showing any major symptoms of the overlap diseases, other than the mild pulmonary hypertension, extreme fatigue, achy joints and a tendency for my fingers and toes to be cold and feel numb at times. The goal is to get the disease in remission. If we can accomplish that, then my chances of complications from the disease are lower. Prayer request.
The MCTD still wipes me out some days. The achy joints and muscles that go with both the MCTD and Fibromyalgia slow me down. I’m learning that naps are sometimes necessary, and when my body has had enough, I have to respect that. I can’t just push through the fatigue as that could cause a major flare-up and make my symptoms worse. I never know until I wake up what kind of day it’s going to be. I may have a good day and even feel energetic. I may go to bed feeling pretty good, only to wake up in pain and so tired I can’t imagine getting up yet.
Some days the effort to get a shower is about all the energy I have. Many days the thought of preparing dinner and doing the dishes is more than I can handle, so we eat take-out way too often. When I cook, I try to cook enough for leftovers or prepare soup we can eat on a few times.
I say no to a lot of things. Not because I want to be anti-social (well a little of that could be my introversion) but because I simply do not always feel like getting out, or being around people. I imagine cooking family dinners, or having friends over, but that doesn’t often happen because it takes too much energy. At times I will be puttering around the house doing simple tasks such as laundry and poof, just like that, I’m done for the day. I usually have two to three hours before the energy gives way. If I time everything just right and get a nap, then some days I can have two energy spurts.
If I take care of myself and stay on a schedule, then I think it can all be very manageable. However, in addition, to self-care, I’m also my Dad’s support for my mom who has Alzheimer’s. If you know anything at all about Alzheimer’s, then you know that there is nothing routine. Even in good health, my mom was not a person that could be predicted by her routine. So, I have to allow for her needs, which means some days I take care of her, and I rest and everything else gets shoved aside. I realize that my priorities will have to change. I further realize that I can only travel this journey in God’s strength. And, I need the prayer support of friends and family.
I share this with you because I needed to see it all in writing to know how I’m dealing with the process and possibly to make it real. I share it so that those who know me and are around me can understand what I’m going through – you can read this and then we don’t have to talk about it so much. JK, sort of 🙂
Maybe, too, it will help you understand the world of silent diseases a little better. To most people I look well and I’m sure there are times I sit one out or don’t show up and it seems like I’m just lazy or anti-social. The truth is I may be in such deep fatigue or pain that I can’t fathom being on my feet another moment; it is possible that quiet and rest is the best thing for me. I can’t plan ahead well and guarantee that I’ll be ok on any given day. There have been many times I plan for an event and when it arrives it is just too overwhelming. So, I tend to wing it most days and not plan too far ahead.
I am not complaining, although some days I do fall into that temptation. And although some days my faith wavers, I am trusting God because I know he is faithful. He is the one who stands beside me, and he is the one who will sustain me. He is my buckler.
Moving forward will be a learning curve and I’m sure there will be gifts to unwrap in the process.
Moving forward in grace,
When I shared a little with you last week about my health journey, I wasn’t sure how much more to share or where to go next. I know some people like more details. I know that I need to see how it all fits together, so I write it down. Everything I have written so far was too much for one post, and there is a summarizing or going forward element to all of this that I also need to share; therefore today’s post will be part two of four parts. Today goes back a few years to give you some backstory that some of you already know, but I’ve not written about it much. In part three I’ll give you a little more specifics on my journey last year (which started late 2014). Then, I’ll wrap up this impromptu series with part four, which I still need to write. If you don’t mind indulging this foray into my health, I think I need to process before I can move forward if that makes sense. And I want to go forward. To read part one first, click here.
In 2011, I contracted double pneumonia that almost wiped me out. I was in the hospital for nearly three weeks. My understanding, after the fact, is that I’m blessed to be alive. My kidneys were beginning to shut down, which resulted in a couple of dialysis treatments and my heart was going into Afib. I was in ICU for the first week and don’t remember all the details, mostly just impressions. I ended up with plasma and blood transfusions. I had a thoracentesis to draw fluid off my right lung. I was too sick to pray for myself, but I kept getting reports that others were praying for me, and that was what sustained me. I knew God was with me, and I wasn’t scared. I felt safe like I was in good hands.
The fear came later after I was home. I was sent home on a bitterly cold night. Rocky’s mom was with us and between the two of them – one pulling and the other pushing – they managed to get me up the steps from the parking lot and into our apartment. It took me several days (ok weeks) to adjust to being home and trusting that I would be alright without around the clock care.
Rocky’s mom stayed with us a few days; my sister came after that, followed by my parents. I remember the day my parents left, my dad knew I was apprehensive about being alone while Rocky was in classes. He reminded me that God would be with me and that I had to be on my own sometime. In other words, he was telling me the time was now, get on with it already (but in a nice way). So, I did for the most part. We still had a few people who sat with me on the evenings Rocky had to be away, but eventually, I got used to being by myself again.
And, finally, I made it back to work. I didn’t want to go back to work. Not because of my workplace – they were wonderful to me and very supportive- but because I was so drained. I don’t think I realized until some time later just how much the pneumonia had slowed me down. I’m sure I didn’t pull my full weight at work, but still, they were gracious and showed me Christian kindness. Everybody pulled together to help me.
After the pneumonia, everything in my life became defined by pre or post pneumonia. My whole life became measured by that event. The year before the pneumonia I had been through surgery and had finally been feeling like I was back on track, and then the pneumonia hit. After the pneumonia, I assumed that I’d feel like myself again soon enough. But I didn’t. I had good days, but they seemed few and far between. My tolerance for almost everything was on a short leash. The simplest of things seemed more than I could handle. And I was suffocated by fear.
Fear of everything. I became more aware of death and getting older and how short life was. I lived life waiting for the next bad thing to happen. I remember in the winter of 2012 holding my breath hoping I wouldn’t succumb once again to pneumonia because I wasn’t sure I’d survive it a second time. I started questioning my faith and my salvation and whether or not I’d done everything right to be accepted by God. (Knowing full well that it is all about his grace and my faith).
Quite honestly, I believe I was under attack from the enemy, he was trying to push me to the depths of despair while I was in such a weakened state. I prayed a lot and clung to the scriptures that had sustained me while I was sick. I put on a brave face and tried my best to muddle through. And, I must just say here, that God was and is faithful to me. He has been my rock through everything.
I lasted about a year after returning to work. Then we moved. I haven’t worked public work since. The day I knew it was time to leave, was such a liberating day. My job was our primary source of income while my husband was finishing school, but I knew God was telling me it was time, and I knew he would provide.
We moved back to my hometown to the little house we’d been fixing up next door to my parents. My mother was battling Alzheimer’s, and my father was no longer driving due to Macular Degeneration; it was becoming more apparent that my parents needed me.
The first few months back home were filled with good days and some pretty bad days as we all adjusted to the new normal of living with Alzheimer’s. It was very taxing mentally more so than physically. I still had days that I felt wiped out and barely had the energy I needed for essential tasks.
My husband would shake his head that something as simple as basic housework or going to the grocery could make my whole body ache. I couldn’t explain it. The simple everyday things that most people do like cooking, dishes, laundry, scrubbing the toilet, running errands, etc. became overwhelming to me. There were many times that I didn’t want to go out or attend events because the effort just seemed like too much. I struggled with feelings of guilt, inadequacy and wondering if I was just lazy, or was I really that tired.
I had known for several years, long before the pneumonia, that I sometimes got tired easily and that I ached quite a lot. I would have good energy days that everything seemed to flow. I managed most days to function. But, if I had an especially tiring or busy day, or if we’d go on a trip, even just a day trip, I’d pay for it later. It would sometimes take me several days to bounce back.
I had even suspected that I might have something going on with my autoimmune system, but for whatever reason, that route was never pursued. I also had a lot of hormonal issues, so I chalked a lot of my tiredness to that. No matter how tired, overwhelmed or depressed I became, it got better sooner or later. So, I naturally assumed after the pneumonia that things would eventually get back to normal. And, although I did see improvements and even had some excellent days, almost four years later, I was still floundering, and I was still aware that I had not bounced back to my pre-pneumonia state of health.
Come back tomorrow (or soonish) for the rest of the story?
Relying on grace,
This post has been hard for me to write and I’ve struggled with whether or not I even need to share. I’ve embarked on a health journey that will be an ongoing part of my story. Writing about it helps me see how I am processing and will hopefully give me perspective. Since you sometimes read what I write, you too are part of my story, so I thought maybe you wouldn’t mind if I shared with you. The original post was too long, so I have broken it down. Today’s part is more general and reflective after living a year of discovery that led to a diagnosis of a chronic autoimmune disease. The main take away is that God is faithful, even when I have questions; especially when I have questions.
God is good, even when life is not. I know that. But yet, sometimes I wonder why he allows me to suffer. I find myself wondering why I’m being punished. I know that is not Biblically sound, so I try to banish that kind of thinking immediately. Even though I know better, I wait for the other shoe to drop.
I remind myself of all the good that God has bestowed on me and remember the times he has restored my health, but I still find myself wavering on a shaky tightrope between faith that he will heal and fretting that maybe I’ve run out of get-well tickets. Again, I know that is faulty thinking. I know better. And I pray hard because I don’t want to give in to such fear.
Because it is fear brought on by attacks of the enemy who is constantly trying to defeat our walk of faith. If he can convince us that God is out to get us then he can render us useless and a quivering heap on the floor, bound by fear, unable to fulfill God’s purpose for our life.
Even in those times when we need healing, and God chooses otherwise, he is still good, and we can still have faith in his promises. He has promised never to leave us or forsake us. He is faithful. I know that, and I cling to that and do my best to head in the direction of hope. And I pray hard, thanking God for his goodness even in the midst of my bad.
Life for me last year was a very up and down journey that ranged from despair and depression to faith and hope and back again. I’m sure over time I will be able to unwrap some beautiful gifts from the journey. I do believe that in all that is hard, God works on our behalf and teaches us great truths. When bad things happen to us, he doesn’t leave us to stumble in the dark. He is right beside us, holding us under his feathers. He knows life can be scary and uncertain, but he also knows that he is our only certainty. I know that too.
The truth is we live in a fallen world that is rampant with sin and disease. Sometimes, for reasons we may never know or understand, we fall prey to the fallen. We know that bad things do happen to good people. But God, in his great merciful love for us, holds us tight in those times and works on our behalf. We don’t always get the answer we are hoping for, but we always have the hope of our father. In his time, he will make all things right. Some of us may suffer this side of heaven, but he knows all about suffering, and he knows how to comfort. And I pray hard because I need his mercy and comfort as I live in a fallen world.
Praying hard for grace,