My nine year old, Ammy, saw me last week taking my injection out the fridge. She even expressed surprise that I was doing it myself. All along, she thought I was going to a doctor to inject me.
I hadn’t even meant for it to be a big production. But I’d had an appointment earlier on so didn’t take it out to warm it up at my usual time. Yes, my older children see it in the fridge when they take stuff out, but it’s not in their faces. (I hope.) I doubt they look inside and think, “ Oh yes, Mom has an incurable disabling disease, this should hopefully slow it down.”
So I was startled and amused when yesterday, Ammy asked, “Mom, is your ankysauraus spondylitis gone now?” I giggled inside at the name, and told her seriously, “No…I will always have it. Why do you ask?” (How could she forget that I’m treating it weekly? Did she think last week’s injection was the last treatment?)
She replied with, “You don’t act sick. You act normal. So I thought maybe it’s gone now.”
The sweetest words this mom could ever hear! There are so many things AS stops me from doing. So many minutes I cannot stand or sit with my children. But they don’t see that! She just sees a mom who is teaching, doing chores, hanging laundry, taking laundry out (I don’t take a huge basketful in one go. So I make multiple trips.) She doesn’t see the CAN’Ts. She sees a normal mom. Sometimes these invisible diseases are better. I don’t want her worrying. When the pain hits too hard, I give them something to do and I go lie down. I try not to burden them with knowledge that will worry.
And that is why I haven’t told any of the children the latest lung diagnosis. Interstitial lung disease isn’t good. To have fibrosis too is worse. The lungs are scarred and struggling. And the only way is down. I haven’t told them a thing.
I know of some angels who put university on the back burner when they hear their parents was not great. Truth is, an infection can kill me before I even get too bad. But I could also live 10 years on a slow decline. So why worry them? Why clip their wings if they want to fly far? (My daughter wants to go work overseas after she’s done her nursing degree.)
And so, I rejoice that to my angel who is a worrier by nature, I act normal. I pray I don’t need oxygen for many years to come. Then I will look normal. Invisible is a blessing when you don’t want to cause little ones to worry and fear.
And a smile, daily smiles, go a long way in reassuring little ones that life is normal.😊
My dear friend asked me if it’s right for doctors to not be forthright with patients. To not tell it exactly like it is. I said no, it’s definitely not right, she is correct there. (I’d told her about an AS patient who suffered terribly after they had to basically undo her bent over spine and insert rods and pins to make it straight so no longer wanted to fix her permanently bent neck. The doctor even phoned to ask when she would have the surgery. She said no.
I don’t think the patient knows what I know. The cases of people who died because their bent necks crushed their tracheas and they were not able to breathe. I saw it in a dedication post by a daughter whose dad died like that. I suspect her doctor wants to save her from that possibility. But hasn’t told her so. Hasn’t told her what can happen as the AS progresses.)
After my lung functions tests, which hurt and led to much more discomfort than I’d ever felt after some of them, the doctor wasn’t happy with the fact that the lung diffusion test also had a bad result. (We have long known my lung capacity is low.) He asked about my iron, suggested that I have a full blood count done so he could check my iron and I told him I’d had a blood test two weeks before, requested by my rheumatologist.
He then phoned his receptionist and asked her to phone the pathologists and get my results as he needed to know my iron levels.
HE DIDN’T TELL ME WHY HE WANTED MY IRON LEVELS EXCEPT TO SAY THAT IF MY IRON IS LOW, IT WILL EXPLAIN MY POOR RESULT.
We waited. And waited. I didn’t even realise how significant it was that we didn’t just continue with the rest of the appointment, end it so I could leave and he just look at my results whenever they came through. I also didn’t get the significance when he said (after the results came in and he saw the official copy) a baseline CT scan would be good, just so later when damage is visible, we can track it…After a good 10 minutes of us just sitting there, waiting for LathCare to respond to the request, I got tired of awkwardly reading a book in front of him, and decided to go onto my PathCare app and show him from there. He saw that my iron was definitely not a reason. But didn’t say what exactly it was not a reason of. Didn’t say what lung diffusion is about.
So I assumed it meant that air was not going everywhere it should be going when I’m breathing in.
But that’s only a very high level understanding.
It means that oxygen is not passing properly from my lungs into my BLOOD. This is now not only about my lungs themselves, but about my whole body. Blood is life. If my blood doesn’t have oxygen properly, we have fatigue, weariness etc. And of course, it’s not good. Our bodies need oxygen.
Before the scan results came through, I’d been hoping that perhaps I had just been having a bad day that particular day when I went to do my lung function tests. After all, I’d done them twice before and I’d never had the pain and discomfort AFTER them that I had this time. Maybe something had been off that day.
But the scarring and bands (I read my CT scan report after the pulmonologist update me and told me to go in if I feel my lungs are deteriorating, instead of waiting for our next formal review and scan.) in my lungs put paid to that. There’s a physical reason why this test was so horrible this time. Why my lungs felt like they were struggling.
They are.
And so, it’s sad that I had to find out what the lung diffusion test is about via online websites on pulmonary fibrosis. I wish he had just been open. Yes, he did say we will intervene when you can’t sing and can’t walk and talk, but he didn’t tell me that intervention eventually stops working and you die. He didn’t tell me that yes, some do live long, but the average life expectancy after diagnosis is 3-5 years.
Knowing my days are shorter than hoped would help me take each one that passes without a crisis and make it even more special to me. I’ve been very grateful that despite having AS, I can still move my neck and twist my back. Things I’d have never been thankful for. If he’d made the reality more clear, I’d have been grateful even more that “today, my lung function hasn’t become so bad that I have had to ask to see the doctor.”
And besides the Enbrel suppressing my immunity, I’d make sure even more that I don’t get sick. Last year when I had a chest infection, my husband spent a night awake, very sure I was dying because I kept breathing like I was taking my last inhale. It was ‘rattly’ and the breaths were very far apart. Now we know it’s a possibility. An infection killed quite a few of the members of the fibrosis group I was in who weren’t yet inactive and on their death beds. They thought they still had time. Each time I’ve told my friends I felt like I was dying, it was more real than I thought. So grateful for LIFE.
But
Life is full of surprises. Lots of hardship. The first rheumatologist I saw thought the never ending AS pain and constant fatigue plus the children’s extreme needs were “too much, it’s not fair.” He asked, “Why is God allowing this?”
I don’t know why. But I do know that friends who care about every aspect, offering moral support, not unsolicited advice😉, make it easier to bear.
Bearing each others’ burdens. A theme of mine lately.
And I hope I never become so self focused that I stop caring about my friends’ hardships because I seemingly think mine are more important. I hope my people never stop telling me that I’m caring and kind for remembering them. There’s room in my brain for the problems of everyone who has made room in their minds for mine!❤️
I don’t want to become the person who out of the blue writes, “Hey A, how are you? I just wanted to check on you and hear how you are these days. My lungs are terrible, I can’t sleep at all and would you believe, my loc broke and it’s the third one this year to break off at the bottom and I’m in so much pain! The Enbrel is giving me horrible side effects and life really sucks. I have nobody to listen to my complaints so under the pretense of wanting to know how you are, I’ll really update you about how important I think my problems are so that you think this message was about checking on you when really, I won’t recall how you respond, i won’t internalize your response at all because I just wanted to get off my chest how miserable I think my life is so you pity me.”
Shoot me if I become that person.
When I want to check on someone, may I mean it. May I just write and ask. And wait for a response. Even when I’m using oxygen – in 100 years’ time!
Common Signs of Interstitial Lung Disease, Fibrosis That I Had
– chest infections that become very bad. One doctor even said I’d been so worried about the children’s sickness that I put myself last, endangering my life. She reminded me that a dead mom can’t nurse the children
– crackling when your doctor listens to your lungs via stethoscope
– doctor not hearing sounds of air in parts of your lungs
– being given asthma pumps but them not helping
– dry cough
– discomfort in lungs when lying flat. Less ability to breathe
– breathlessness
– wheezing
– tiredness. This one I have only thought was caused by AS fatigue / exhaustion
– chest x rays that are clear yet doctors think you have a problem with your lungs
If you have these and others that you can freely google, please rather see a pulmonologist instead of your beloved GP. My GP kept prescribing antibiotics even though chest X rays showed no sign of infection. She never suggested a specialist. I just figured that if antibiotics hadn’t ’put any air’ in the bottom of my lungs where she couldn’t hear any, a second round wouldn’t either. I needed someone with more expertise.
I had so much hope when I began this blog. My original one was about my hair. That was easy! There were changes to discuss, cutting it to discuss, and just sharing about my country. Going from processed to natural was a big thing and I had many fellow loc sisters following along and responding. I had community from all over the world interacting. I knew we were journeying together as they shared tips, or congratulations. I want writing to just Flydah😅(thanks for commenting here despite finding me on WhatsApp too!)
Then, in 2009 I could also share about our time doing missions in Tanzania. Again, there was much to write as wonderful and sad things were happening. Looking for our own project to run, finding AIDS widows and their children with no food. One woman couldn’t even come to the door as she had no clothes at all. We could make a difference and we did. It was lovely! There were highs.
Then my currently eight year old son’s diagnosis, his struggles, his triumphs when he stopped falling and stopped running into walls. When I stopped having to pick up an injured baby and when I didn’t have his blood on my dress anymore. There were highs! There was progress!
This time. I can’t. I can’t find the highs. I don’t have progress. Not in the things that matter most. I am still in pain. I still haven’t found out if Enbrel is working for me and it’s not surprising. I only started taking it on January 25. Instead of highs, my health is getting worse. My lungs are not behaving. And I feel it. I lie here now at 6:22am and I need to take pain medicine before I can even consider moving. That’s my morning every morning. Pray. Read my Bible. Fall asleep while reading. Feel guilty. Read some more. Pray. Feel pain. Try motivate myself to get out of bed to take pain meds. Wait for them to start working. And then try exercise if I won’t be doing too much housework.
That’s not interesting! Telling you that I tried vacuuming and mopping- well, I didn’t try, I succeeded. Telling you that those are activities that cause extreme pain so I am now stopping…What will that help? I started blogs to show God’s mercy and kindness to us, to others, to my children. I shared a mixture of interesting and disheartening things. I had a variety. Now it’s constant.
Constant pain. A huge struggle with depression. This is what is constant.
If it’s not my NotMuchofaTalker angel as above, it’s my son, especially when I’m not with him. When I’m cooking, or cleaning somewhere, or doing a video for them, or making… He screams purely for attention or when he’s angry that he is being corrected. He screams when told to get dressed. He screams when told to bath. He screams just because… Yesterday he screamed and screamed because he fell and nobody saw him so nobody said “Sorry.” So he screamed. My teen daughter went to check on him. He kept quiet. He wasn’t injured visibly. She then went back to cooking. He screamed again. My teen son went to check. He stopped. My son obviously didn’t show the level of concern he wanted. He started screaming again. Loudly. Very purposefully.
I thought of the passersby. Their conversation we could hear and wondered what they thought of the screaming.
My girl. My girl first screamed yesterday because she was stopped from putting a cardboard container of blocks into their toddler swimming pool. She then screamed later because she wanted to put her own slipper on a very tiny bear but it kept falling off. Then later on she screamed because she didn’t want to bath. Yet when in the bath she is happy. Unless she sees me. Now she cries for cereal while in the bath. So I have to hide even when she’s in the bath, not only in general.
How do I get any work done!??
And that’s the problem. Two years ago, I prayed she would progress. I hoped she would stop being so unfocused and would enjoy a toy, a puzzle, a programme on TV for longer than 30 seconds if even that. The things she enjoys for a long period of time, she stops enjoying very quickly. I don’t have money to find new things to captivate her daily! And it’s not like ALL new toys captivate her in the first place.
And that’s the thing. If I were to tell the truth in this blog, it would be heavy. It would always be constant pain. ‘Chronic suffering’ of every sort. And I don’t WANT to be that. And my reader who comments is already available on WhatsApp-she can ask me privately and does anyway on days I don’t blog or don’t post shot out health. So why blog? There is no progress. There is no’ magic bullet’ to share. And you guys aren’t autism moms anyway so you wouldn’t NEED the magic bullet. So…Why blog?
There’s no reason to. Yes, good things happen. But they don’t undo the bad. They don’t make my actual journey smoother. For two years I hoped for peace, less screaming, I wished her mind would rest…
I had hoped I would share those moments, not the ones of shutting windows so neighbors don’t get disturbed by us.
There really is no point in sharing when all there is to share is struggle. With her, with almost everyone in the family-including the medical field that is refusing to help my angel with her rib pain.
Silence is golden. I will wait and hope. I can’t do this for another 20 years. Maybe one day I’ll be back. But not here. I stopped my automatic payment due next month for this site. I just wanted to end it ‘nicely’ so you don’t think I was run over and killed or something.
“Severe” autism and AS have won- for now. I need a miracle before I lose my mind completely. I’m already drowning and have lost my joy. There is no large group of fellow autism mom sisters to respond and reply. Or AS warriors to share tips. I am alone. (With Flydah.🤣 )And she doesn’t need a blog to find out how I am. ❤️
Hoping the other handful of readers have great years ahead. If you’re hoping for a miracle, I’ll hope with you. See ya on the other side! 👋🏽
PS. My husband is not happy about that. “Well, FIND something to write about!” I don’t know… Ok. Maybe I’ll do something for Adventists on our current Testimonies to the Church vol 3. I had been considering doing it via YouTube. Maybe I’ll do it here. It’s still not about my life. But it will be WRITING of some sort. And who knows, maybe the learning centre director who has disappeared and stopped responding, will suddenly appear again. Or someone will find a cardiothoracic surgeon to fix my angel’s rib.
But…I still want my angel to be happy. Always. And only sad for better reasons- like, falling. Or missing dad when he leaves.😅
I don’t thank Him EVERY day. Today, I’m out of options and solutions and hope. Today, I am done. I am tired. I am sad. Today, I am fearful, anxious, worn and weary. Today, I am not feeling anything close to thankful, only desperate.
Truth is, it CAN be worse. But, my goodness, it could be better too! And so today, I will recognise that acknowledging that things could be easier is not wrong. Asking God why He won’t make any aspect easier is a very fair question.
There will be days when we just sink. Distressed, upset, faking the smile that adorns our faces. Patient when feeling impatient with God. Where is the help You promised? Where is the strength You said you’d provide for each day? Because right now, today…I am weak.
I honestly despised the light, trivial, thoughtless happy new year messages I received this year. It was like the sender put no through into it at all. How can this be a great year when none of my years have ever been great, pray tell? How can I be happy – the way it’s meant in that phrase- when every day is painful? Physically and emotionally?
I’m also mindful of those who didn’t send such light, pithy messages. The ones who wished I “get better”…Umm, I have an incurable disease. Keep your miracle hopes to yourself . I know they didn’t mean, “I hope this year brings treatment that brings relief.” I know they actually have no idea what AS and her friends have done to me and continue to do to me. Just like the very same people have no cooking clue how hectic my parenting and educating journey is.
I don’t need messages, I need help. And I don’t know where to find it.
I need affordable special needs educators for all three of my younger children. There aren’t any.
I need my mommy dragging non speaking angel to stop dragging me and stop seeing food when she sees me. It gets in the way of our ‘learning’ and our play and my chores and my interactions with the other kiddies. Will it ever happen?
I need to figure out how to help my middle two who it turns out have words, but have no idea what the words mean. How do you even communicate when you have to ask them to re-phrase just in case what they are passing on isn’t what they intend to share?
Where is the help? I wish we were living in my book. Lol. There’s a foster book I was reading based in the UK . The foster child got the child one on one help via a teaching assistant or aide that sat through each lesson with the child and helped that one child. Ha! What are the chances HERE? That would definitely be something I’d use if I were there. (And a foster mom. I don’t know if the State provides the services to normal families.)
My body pain is increasing. I feel sick – nausea etc (Finished my antibiotics tests and REFUSE to take more!) I’m done . I want to sleep. I want to rest. I want to relax.
While I wait for that opportunity. I’ll rejoice in having hung half the laundry. It could have been none of it. I’ll be glad I did something educational with my talking children who do engage with me. I will rejoice over how once during a very long puzzle play, my non talking angel told me “two!” as she put the number 2 in the correct slot. I’ll be happy in how she now does turn the pieces around, only giving up a few times and asking me (Pulling my hand while holding the piece and directing me to the right hole!!)
I can not thank God for our challenges as they are just too overwhelming. But I’ll thank Him for other things. I hope He sees the above paragraph because I’m too sad to talk ‘happy’ right now. Maybe later 😅
Wow, wow, wow. After a terrible night where my elbow (the one that was operated on ) was keeping me up, today took me back to 2011. The pain is low, where my coccyx is. And it has not reduced in intensity no matter which tablets I’ve taken. I just want to CRY. Or kick. Or scream!
This is nonsense! Deep ache going down my leg. It’s like someone is drilling into my back, and I don’t know why it’s so bad! I didn’t overdo anything yesterday. I didn’t sweep anywhere today. I didn’t bend into a trolley like I do sometimes when Mr doesn’t do the grocery shopping with me. I didn’t do much of a workout, only 15 minutes…I didn’t even wash dishes- I stacked the dishwasher. Ok, I guess THAT bending might not have helped. But it shouldn’t be like that! It shouldn’t be like this!!!! Life is not meant to be about levels of pain. It should be pain free completely.
I read something shared by one of the Associations. I can’t recall if it was the British AS one or the other one called something like ‘Autoimmune inflammatory Arthritis society,” that covers all the autoimmune inflammatory arthritis types out there, but anyway, the article said that scientists had found that unlike rheumatoid arthritis where it’s the joint that’s inflamed, for AS, it’s the bone, not the joint. No duh!! We feel it throughout, it’s not only in the joint! I could have told them that for free. But I felt validated too. Because every time I tried to seek help and they’d try tell me it’s muscle not bone, I’d tell them that to ME it feels like my bone. They would try poke my JOINTS in my between my spinal vertebrae even up to my middle back area (as opposed to down in my my SI joints where I said the pain was!) and of course I didn’t feel much there back in 2011-2015!
What do I with all this? The excruciating pain? The fatigue that was so evident that Mr felt sorry for me, telling me at midday that I look “so tired, shame!” What do I do when I feel extremely alone, nauseated from the pain tablets and helpless?
I thank God anyway. He must be doing SOMETHING with all this suffering. It can’t be for nothing. It’s been decades and it’s relentless. He MUST be preparing something stupendous and amazing for me. I know He will wipe the tears away, I know He will be excited to give me a new body. I know He sees my pain and hates that I’m going through it. And I know He loves that I lean on Him anyway. Even though He isn’t healing me.
Even though He isn’t healing me.
God isn’t a fairy godmother like I thought when I was a child and expected Him to work miracles for me. He isn’t magical. He doesn’t just do things for the sake of just doing them. He doesn’t NEED to perform a miracle in order for me to believe in Him, trust Him and love Him like He has to for some doubters. So..Why SHOULD He heal me when I don’t need to be well in order to glorify Him?
I can ‘live’ for God even when I feel like death would be preferable. I can show His character to every radiographer. To every doctor…The GP just had this look of awe on Friday as he heard about my life- he’d wanted to write me a sick note to be off work for the finger, not my bones. Like he was seeing what the friend of an acquaintance saw in me, like I’m an angel. (Not that I FEEL like one.)
God made me to glorify Him in the pain. And I can do THAT perfectly. I can smile at my children, sympathize when they spin and smash into the TV stand, getting a bloody lip. I can praise my teen daughter for giving away a whole box of expensive, fancy biscuits (she’d bought for herself) to a beggar on the street whose board claimed he had no food at home. I can be a present mom precisely because I know God is present for me too.
I’ve been studying the book of Job. I always study the Bible from the start to the end. I don’t do thematic study except for when it comes to Daniel and Revelation where I compare similar themes. This month more than ever, I felt Job. When his friends hurl accusation after accusation, he can confidently tell them he KNOWS God is not punishing Him for something because he has done nothing wrong, and done everything right.
And so do I.
I got sick from infancy. I did nothing wrong. And I aim to do everything right. Unlike some accusations hurled at me over the years, I DO have faith. Faith that God knows best. Unlike some accusations, I know I will not be miraculously healed by seeing some weird guy who claims to fly to Russia in his head! I know my healing will be when God comes. After all, I’ve heard of some AS patients going into remission. But not healed. Why should I think I deserve what they don’t have? I know of too many AS patients who have died due to it. Why should I live? I’m not any better or more worthy than they were.
And that’s ok. I’ll thank Him anyway. I’ll praise Him for the good and the bad. I’ll thank Him for the little milestones. Like how my non-talking twin was terribly afraid of dolls for AGES! And now suddenly has been taking her big sister’s baby girl from her room. I will tell you that I left the shops extremely sore but happy that I found two brown babies for the twins so the one stop stealing her big sister’s baby, and so the other stops crying that she too doesn’t have one in HER hand.
My baby girl isn’t scared of dolls anymore!! I’ll thank Him. Now and forever more.
Trying to keep my hand elevated. Watching the redness return that my rheumatologist had said must be gone before I inject again, my cuticle slowly draw up away from my nail, more of it with each passing day, I was going to be honest about how I feel today.
I’d had a serious question on my mind earlier on when I lay down in agony after only managing to clean two rooms -a bathroom and a bedroom. And having already begun my AS exercises in excruciating pain by 6:13am, unable to continue.
It was off putting. All these “Merry Xmas” messages from people I wouldn’t expect them to come from. People who didn’t care to think that it would be possible that I was feeling anything but happy as I contemplated the question I allude to above. People who didn’t have the courtesy to ask, “Hey, what kind of a day is it for you? How’s the AS treating you today?”
“For me, is there even a difference between quality of life and quantity of life?” was what I asked myself as I soaked my throbbing finger. It’s usually a question asked when treatment impacts the dying patient even worse than the disease being treated, but knowing that the treatment is keeping them alive for a just a bit longer. But what about me? I have no real quality of life. I am in pain, I can’t use my hands, I can’t iron the mountains of ironing (Ironing Lady is shut, for obvious reasons.) I probably shouldn’t have even hung the many loads yesterday. I don’t have any AS treatment going on, so I can’t say if the impacts are affecting my quality of life.
It was going to be a post along those lines. But it won’t be. There’s no point.
Instead, I’ll post about how during quiet time, I went to my usually non-speaking girl’s room and just lay down next to her. She hugged my face, smiled, grinned…I took her leg and did some deep compressions around her joints, counting to ten as I moved up to the next joint. Then she said, “Eleven…” and looked at me out of the corner of one eye.
I said, “Twelve.” She continued onto 13..and so we took turns till she eventually shouted “Twenny!” Then she covered me with her sleep sack. As she lined her book and puzzle next to each other, she went to the wardrobe and took another puzzle out and lined it up next to the first puzzle, and said, “THREE!”
Unlike her bigger brother, there was no need to count one at a time. She just shouted the correct number. Then she added two more items and shouted, “Five!”
I hasten to add something I’ve seen in one person. Speech production isn’t a sign that autism is “going away” or that she’s “getting better” and soon all will be perfectly ‘normal.’ It shows that she’s growing up, much like when a baby goes from crawling to walking. It’s a developmental milestone. But given how she recently spent a few days saying NOTHING, it’s not a sign of ‘progress’ in the sense of knowing that tomorrow she will repeat the counting.
But it was LOVELY when she called me “Mommy shark” yesterday. I hope she does so again one day.
And that’s what I’ll end on. Loving my children, being a good example, wishing I could care for them properly, but thankful for our moments of connection.
I still haven’t recovered from the infection to the point where the rheumatologist thinks it would be safe to unleash an immunosuppressant on me. “No redness and no swelling.”
Instead, I have white. The hole is no longer producing the stuff you’d assume would cause the current whiteness. Pus. I hate the word. Sorry for grossing you out! The joke itself has not closed up.
And I definitely do not have “no swelling.”
In fact, pain has increased.
Normal finger
Not so normal finger.
I really woke up hoping for the best today. Hoping to inject. Looking FORWARD to the stomach pain and bloating.
I always understood intellectually the cancer survivors who’d write how distressed they were that their white blood cells weren’t a high enough number for more chemo. A count reduced by the very chemo! Thats where I am. Enbrel has probably suppressed my ability to fight. But I desperately want it so we can know the way forward sooner rather than later.
I’m disappointed. Sad. Tired. I want to be pain free. I don’t want to get up from sitting on the toilet, or stand up straight from bending over the bin and scream from pain from those movements as what happened today. (Hopefully that’s the last time!)
Definitely no injection tomorrow as was meant to happen.
Slightly desperate times. But at least my whole hand is not sore anymore and though worse than the day I went to the GP, slightly better.
Maybe Friday?
Please this week…
The pharmacy guys phoned to ask if they should order my last bkx of Enbrel (the script is for three months at a time.) I still have four injections in my fridge and surgeon and anesthetist’s bills to pay, so..no.
I’ll wait.
Hope.
Watch
Pray.
And beg for a chance to wage war against this disease.
Oh my word! People can be so interesting. I’ve been told I have AS because I have trauma I am refusing to go resolve…I don’t have faith…And today’s one was “Because I’m not doing hot and cold therapy and using charcoal” in a nutshell.
This person kept digging and digging at me. Telling me that I got sick because I don’t “follow health reform” and that if one “follows health reform,” they won’t need surgery. Umm, tell that to my strange abdominal muscles that feel like “soft tissue.” Or to my urethra that narrowed itself so bad that it was basically strangled. Or the polyps and fibroids that keep popping up. Or the little baby that born with three urethras whose kidneys are in trouble.
Yep, all our fault because we don’t use charcoal🙄 Or maybe he has fetal trauma he hasn’t addressed?
One thing I’ve got a major problem with, is others wanting me to heal without asking God if that’s His will. What if by being ill and in pain, I’m avoiding some activity that would eventually lead to pride? I’ve seen it in runners, sharing their stats instead of just posting that they ran, wanting to take part in marathons to show others (And I mean specific people I know. Not judging others for their motives for running the Comrades.) what their bodies are capable of. Even planning and running specific times (as per schedule they have ) on the Sabbath because they’re preparing for the Comrades. And as a Christian I ask, “But what will this do? Will this help you? Will this inspire anyone to be holy, better, kinder? Why sacrifice your soul by focusing on the Sabbathbon some far away race when right now the devil is fighting?”
What if I’d be like that if I could run? Health doesn’t need intense activity. It needs commitment and moderation. They will be just as healthy doing shorter runs and being more useful to their families. But maybe I’d be like them if I could run. Who knows? Or maybe I’d be out the house shopping for hours on end and neglecting my children. I don’t know the ‘worse’ that is waiting for me out there.
And so, for the saving of my soul, or to prevent me from thinking I’ve made it spiritually, the thorn is allowed. What if it’s to keep me from other harm I can’t see with my non God eyes?
Why blame me for NOT being well?
For indeed, this morning was all about blaming me. By someone who suggested charcoal??? Seriously? At least know what the disease is before telling me what to use to ‘fix’ it.
The Psalms tell us to tell of God’s goodness. I don’t know if He had a hand in it, or if the flare is over, but today I had a MUCH better start to my day, and I’m HAPPY.
I usually wake up stiff, fatigued, bone tired fatigued, exhausted, very stiff (Yes, I know!) and in excruciating pain. Pain so bad I can’t move until I have pain tablets. Well, I move. But I can’t be active fully and my normal self till after the second dose of pain tablets -about six tablets spaced out over two hours. By the way, I’ve found that my shoulders are stressed or tense. They’re raised up. I have to keep telling my shoulders to relax. Is that stress or is that part of the disease? I keep getting scared I’ll fuse with my shoulders up. It’s kind of a weird feeling that I can’t really explain. Maybe it’s from ‘holding’ myself upright and keeping myself going while in pain? That tension??
Anyway, back to topic. I woke up and was able to do my Bible study. I was able to clean three large mirrors. I dusted a shelf. Then re-dusted it later when I realised the difference it makes when I clean with my glasses ON🤣and was able to sort out two loads of laundry. That’s laundry for EIGHT people! And I did all that before 6am!!
I finally needed the pain meds at 6:30am when wow, I had to go lie down quickly. Which is where I’m blogging from. But man, this was a reprieve! I got to be useful way earlier and without having to handle extreme pain and exhaustion.
It was a good 45 minutes. I hope one day to have days and months where I don’t need pain tablets to survive. Where I don’t work a bit then collapse and feel achy and broken and like my joints are grating on each other as has happened now, wondering how I’ll survive the rest of the day.
Keeping hope alive. And if God gave me those 45 minutes nice and early for a change…Thank You🙏🏾
They said I should write a book 