I’m dropping the Enbrel. It really IS too much of an immunosuppressant for me. I’ve been very careful about catching viruses. Been resting my mask and going to shops when it’s not full. But what about bacteria?
It seems the paronychia is back.
I’d never been convinced it was fully healed anyway. My rheumy had seen fluid still inside my finger -even though I felt no pain-when she performed an ultrasound on it when I showed her it was still puffy.
The GP agreed it looked infected but the hand surgeon told me it was ok. It was just going to remain like that but was ok.
Well, the same finger is painful, had the small peeled off area and is more swollen than before. I’ll treat it conservatively today-hand elevated, salt soaks, topical antibiotic cream, and hope for the best. Last time it took three round of antibiotics to look kinda ok (though still worrying to me and the GP!)
This photo is today. Not too bad yet. The pain level is at the level at which I ignored it last time then couldn’t sleep that night and it had become awful by the next day. I hope it goes down instead of ‘up.’ My husband saw the picture and texted, “No more Enbrel.”
I’ll also contact the rheumy and ask what the plan is regarding treatment and tell them I’m officially quitting my Enbrel despite the three syringes left in my fridge. Or ask for recommendations for people who treat paronychias. But I’ll do that IF this doesn’t get sorted or if one round of antibiotics doesn’t get sorted. I’m holding out for Monday morning when I can see the GP who treated the first attack that wouldn’t disappear.
I always used to not get it! Wow, that was grammatically messy. I never used to get it when they would say AS is worse when not moving and better with movement. After all, the more pressure I put on my AS joint, the more my leg buckles and a sharp pain shoots through and I cry out.
That doesn’t happen when I’m lying down!
Today I finally got it.
I almost didn’t get out of bed but..you know..they clam that CHILDREN NEED A MOMMY. So I got up. Almost instantly, the excruciating “Why am I still alive” all over body pain disappeared! It was now more specific areas that hurt. My SI joints ten minutes into a walking exercise session, my fingers which I out gloves on, and my head and neck.
It still sounds bad, but it is far better than the all over body pain. I really thought I’d have been dragging myself around and wanting to sink into a puddle and just cry. But I don’t. Not when I made myself get out of bed.
Now I understand the whole “Move, you will feel better” trope. Except when your joints are damaged and the arthritis is in your joints, it’s indeed that you will feel BETTER, but definitely, not OK.
And that’s ok. I’d rather feel this than the pain I felt before I got out of bed. Scary how we swop around the type of pain we’d ‘rather’ feel. Scary and sad that we (those in my shoes) have not yet reached the, “I have been great but then a flare came up” stage.
It’s my war cry for today. I’m figuratively on my knees- heart screaming and my invisible eyes weeping. “I CANNOT DO THIS!” In fact, yesterday morning, I mistakenly said it out loud, “I can’t!!” And my son, sweet Micaiah asked from another room, “You CAN’T!? What can’t you do?” Oops. I hadn’t realised I’d spoken out loud. So I explained that my fingers weren’t obeying me. I couldn’t open the blister packet and get his tablet out. At the same time, AS fatigue was so strong that I felt I had no energy anyway.
“I can’t!“
My shoulders are steadily getting worse. I handed Amarissa her tablets while I gently raised my arm, and we both heard my shoulder, “Crraaaccckk!” And it stopped moving. For a moment, my arm wouldn’t go higher.
“I can’t!”
Today, I had so much I wanted to do. But just bringing down and carrying bits of laundry (No lifting heavy things for two weeks after surgery) caused lots of uterine pain and I had to clamber into the bed-womb and bones all screaming,
“I can’t!”
There’s a spot on my shoulder where I rub, and I can feel the sore spot. It’s not in the joint. It’s not where the night pain is. It’s just purely along the bone. When I turn my back, I feel my neck creaking, getting ‘stuck.’ I walked into the pharmacy at 9am, hours after I woke up and yet my legs were still stiff. Not normal. I walked as if made of… I don’t know. Like a fictitious zombie would. I felt shy. I don’t want pity. I don’t want to be noticed. It’s as if my leg didn’t want to move. Didn’t want to obey me. It was telling me,
“I can’t!”
I can say for sure that my right SI joint didn’t benefit from the infiltration. They’re charging us R2500 for that!🫣 (Oh, I’m mentioning the prices because there are people I know who are saving up to do things privately but don’t have medical aid. I’ll be transparent.) I also owe for my blood test. My husband thinks I might even be worse. Yet another reason to never try again!
Speaking of blood test. My kidney function still says kidney disease stage 2. No improvement there. It actually decreased by 4 units. But my liver is still fine.
We have a slow burning panic going on. It’s not only me. My husband is also itching for me to restart trying to slow down this stupid. He was asking what the hold up is, asking if the they can’t just write the script and we see if the pharmacy would refuse to order it without medical aid approval. I had to go collect some of our chronic medication on Sunday so he drove me. My pain and sinusitis meds and my daughter’s ADHD meds, heart meds. Though I had picked the option to STOP the Enbrel, they’d ordered it anyway. He was tempted to pay for it so we are “at least trying something while waiting for the new medication.” But I still have three in the fridge. Surely medical aid will have agreed by then? Surely the panel will have sat by the time six weeks is passed, right. (If I need arm surgery, plan to give myself two weeks after the other op before going in again for the ulnar nerve op. And then after that op I need to wait two weeks before I can resume. Surely they’ll have approved and I’ll have ordered the new injections? If not, I WILL use the Enbrel in my fridge while waiting. This disease doesn’t wait. I saw yet another article about people dying because of crushed throats when the disease bends them over. I’ve seen people not even knowing this disease can do that- make you bend and unable to move your neck. Poor woman was asking in our web group why she’s leaning forward and unable to look up or to the side. 🥹”If it’s part of the disease “or something else as the forward weight makes her stumble and fall forwards sometimes. I wanted to wait till after the teens are done with exams then have my ulnar nerve surgery… But the numbness in my hand is too noticeable and the pain, I can’t ignore it. Like what AS does to bone, once your muscle is wasted and useless, that damage cannot be undone. And I am losing my grip strength. I’m also hoping that for the first time ever, I’m wrong. I would rather go tomorrow and be told I don’t need surgery. Because.. that nerve pain is horrendous. Awful. Unbearable. And it took a year for my skin to not be sensitive as much. How long this time, when the surgeon will have not only released it, but actually moved it to a different place completely, as had been the actual plan last time? It’s another slow/ burning anxiety deep inside. This one, not even my husband knows about. I checked out some soft round pillows with holes on which I can try rest my elbow at night. If the surgeon says I’m headed for another operation, I’m going straight to the aisle and buying it and hoping my elbow will be able to be positioned so it’s in the hole so nothing hurts me. I recall my sad updates to friends who used to ask about recovery. How helpless I was. How no painkiller touched the pain. How even my own pyjama sleeve hurt me when touching my skin, let alone pressure off my arm lying on my mattress, or a sheet on it when on my side… I am dreading it… I am hoping he will tell me it’s all good. I still have last week’s surgery gas pain to deal with. Another surgery..? 😏
“I can’t!”
I have parenchymal bands in my lungs, the lower lobes are collapsed and my lung function is decreasing. When you look up “parenchymal bands” you find one article that says it’s mostly in end stage lung disease and another article that says you might consider hospice at that point.
What?? No way! I still have much life in me. Even if it’s not a good life. Body wracked by pain. Nights..My neck and shoulder scream too. And so, in the absence of any kind of relief from the relentless suffering, I looked for “I Shall Not be Moved.” I don’t care what God allows, like a tree planted by the water, the tree in Psalm 1, I will remain grounded and rooted in Him. Though I really feel like He is slaying me, though I feel the AS moving through my body and I can’t do anything about it, I will trust in Him. And I will not die soon.
(My lung function is dipping below 94 at night. It is going to 92%. Normal is alive 95-100%. When it gets to 88, I’ll tell the pulmonologist. We will need oxygen at that point.)
Still…I’m “on my way to heaven. I shall not be moved.“
Two nights ago, I kept waking up because of severe pain. We’ve now moved me to a full Trepiline tablet at night. It helps pain a bit, but more importantly, helps with sleep so you sleep through the pain..hopefully. But I’d taken only half and my body was in big trouble.
I had taken my oldest daughter far away from home to go do the first of three sessions of exam preparation for her Biology practicals. And, as most of us know, the pain from too much activity or sitting, rises AFTER the event. And so it did.
I woke up and was suddenly in a panic. “I’ve not been on any treatment even after diagnosis, basically! I’m doomed! The pain is because my joints are fusing right now as I lie here!! I’m going to wake up walking like a mummy.” (It didn’t occur to me that mummies don’t walk!) “Should I go to the fridge and just inject the Enbrel in there? After all, we can’t just leave it unused!”
Sanity prevailed. Why would I jeopardise my life when I have an operation coming up tomorrow? Why would I dare reduce my chances of fighting any potential infection or slow down my healing? Would I be so dumb?
I wasn’t. But those injections keep calling my name every time I open the fridge. They are a huge temptation. Moreso because I don’t have approval for the medication we are hoping to start. Half a loaf is better than none, right? So I might as well use what I’ve got than nothing, right?
And then there will probably be elbow surgery too. Long, long wait. So I patiently wait for the certificate from the panel of rheumatologists allowing me to start taking the new treatment, and approval from the medical aid to pay their very low percentage.
It IS scary, feeling the disease progress. But it would be scarier knowing that I’ve put myself in harm’s way by injecting myself when I have high risk situations happening soon. So…I close my fridge door and hope for the best.
Oh yes, I did my bilateral SI joint “infiltration” last Friday. The intact so far has not been felt. Well, not the positive impact. I’m lying in bed and the pain is already there at 7:04am. I tried working out earlier on but was too stiff so will try later.
After a bad night, I’m sleepy now. But my kiddies wake up (the twins) in 3 minutes and counting! I must set my alarm for 2am tomorrow to take my pain tablets before my fast for surgery. I hope it vibrates and I hope they are effective for those horrible hospital beds.
Am I starting to do absolutely fabulously? I’ve seen how many Enbrel (or any biologic) patients with AS don’t ever get full pain relief- ever even when it’s deemed to be helping. When the biologic is working, it means the pain has reduced and damage is slower. That’s all. And sometimes it’s not enough. Patients are “on treatment” but STILL can’t take walks because of pain, still can’t sit long, still can’t go for coffee with their friends. (Naming things real patients have mourned about.)
It’s hard.
But it’s also better.
I am on many painkillers including Tramadol. And I still have to go try the SI joint injections into both sides- when I’m better. So maybe there might yet be relief from those. Last time I thought there wasn’t any relief till it wore out and then I realised it had partly worked after all. It’s like being on a biologic. You can’t always tell because you’re still in pain.
I got distracted! But, it’s also better.
I sit here after two nights of no sleep. After a flare up that began on Monday but has totally disappeared!! It’s never gone away this fast. My last Enbrel injection was on Friday. I don’t know when I’ll be able to inject again thanks to this virus. I need this not only for my bones but for my lungs. It can help slow down the deterioration caused by AS.
Guys, I’m sorry I’m not as coherent as normal. I’m not feeling great at all. My chest is on fire and it feels like it’s crackling inside. But here’s my point.
Last night when I was on the phone with my husband (He’s always traveling) I told him that I thought I’d turned a corner regarding pain and that I think it’s the Enbrel. I had not had to take my Tramadol in the afternoon, in fact, I didn’t take any painkillers in the day time. I usually take three in the morning, sometimes one half way between morning and midday, another three after midday, and three in the evening. But when we spoke on the phone at around 7pm, I’d last had pain tablets in the morning. And I was going to only take the two lighter type of pain tablets- NOT the opioid.
In the night I kind of regretted not taking anything stronger, but the pain was bearable! And that was without the Trepiline I also take at night. I’d forgotten to take it and it makes me groggy if I take it late, unable to study my Bible before the children wake up. Which was ironic because I was so sick from this virus that I didn’t study my Bible anyway. But here’s the thing. I’ve only taken two pain tablets because of the ACHE I have. It’s not sharp. It’s not as if it’s bone grinding on bone like normal. It’s the level of pain I last had in my late 20s!! I feel weird! Like I’m floating! (That might be lack of oxygen talking, or my sinus infection but let’s not go there!)
I read memoirs by other sick people and so many family members and members of the public and church folk give money towards medical bills, travel costs etc and it’s lovely. But that doesn’t happen in Africa. I don’t go to the pharmacy each month and feel bitter about the costs. But reading those books does remind me of how different things are here. But more importantly, I HAVE received! Three people have given me money in the past year. I don’t know how to explain what this means. I don’t have anyone to come help me sweep or mop. So to have someone give money just randomly means the world to me and they will never be forgotten.
I may not have “all these people” giving but I know that those I give to right now, would give to me if they could. I know we love each other and feel terribly for each other. And I know they would come help me clean or put laundry away or cook. One even stayed away after wanting to specifically come and clean when she was sick because of how much she loves me. She gave me health, in a sense – a gift better than money- and at a time when we only knew of one bad lung function. It was in November. Maybe by then my lung diffusion capacity had already also decreased as found in January.
Each payment I make, I remember the money gift that came all the way from Kenya. Prayers do go far. Checking in makes me feel loved. But Enbrel costs money. And so today, I thank my faithful friend who regularly comments on my posts. She makes me feel heard when she does, it helps, knowing I’m not writing into air. And she sacrificed for me despite never having met me physically.
Today, I’m going to be real. Every kind of gift of love matters. But when I realised that though we increased our costs by going to a higher medical aid plan, we would ALSO need to pay R2000 per set of Enbrel injections, my heart sank. I looked at the pharmacist in despair. And she too was upset. Money counts. And knowing that someone gave gives me strength. I don’t despair for long because I remember the gifts. God will provide. He’s already provided sisters who love and check and ask and worry. And money.
That’s the reality. Prayer only goes so far. My feeling thankful despite sickness won’t pay the medical costs. And so, today I focus on money. Not the one I’m lacking. But the one I was given. When I pay, I breathe a prayer of thanks for Flydah, Abby’s mama, who didn’t let borders get in her way. And I pay pretending she’s right there with me.
Let’s see how long this reduced pain lasts. And let’s hope I get better quickly so I can keep injecting. Find someone near you who needs the same and give your time or your money. You know you’ll feel good and I know God will be feeling warmhearted over you when you do. You might be the one to help someone get over their despair.
We bear each others’ burdens. My people know I worry about them just as much as they worry about me. We care equally for each other. I immerse myself in their problems and cheer for their victories. I love them deeply.
This angel above is in her 20’s in Malawi. Daughter of a church sister. Maybe two years ago she heard what I wasn’t hearing as I sent her a voice note and walked around my home. “Mom, why do you sound like you’ve been doing too much? You’re not breathing properly! Please stop! You need to rest!” That is love! She broke my heart recently when I asked her how she is, she answered vaguely if I remember correctly and then when I queried it, she said sadly, “Everybody I love is sick.” And that was before we knew my lungs were deteriorating. Her mother has a chronic leukemia that usually patients have to take lifelong chemo tablets for. Her close friend has heart problems. Major ones.
It was the fact that she picked up the breathlessness. And how I stupidly thought maybe it’s from walking too fast around the house.🤦🏾♀️
It’s this friend
She told me to stop an exercise by Juice and Toya because during the video as I spoke, I started coughing and became breathless. She told me to obey m the pulmonologist who had told me walking 3 times a week is ENOUGH exercise for me. (He didn’t know I cough and splutter for that workout. I need to try and talk for all my supposedly low impact workouts from now on. I hadn’t thought to try them all while talking to myself. I thought as long as I don’t cough it’s ok. There’s one I dumped because I became way too breathless and tired even without talking. I thought that should be my criteria) She said it out of concern as she watched, not knowing that it’s actually true advice from experts too.
As I said, we all share our problems. Life is not perfect and will never be perfect on this earth. Every day brings challenges we overcome, screaming children we try work with, another day with no job interview, heartbreak over children in their ministry who are neglected… But it seems sometimes, that love is one- sided.
I shared once how my husband was bemused and slightly disapproving that I was doing housework late at night. After all, I had been caring for our family of eight during the day too. And we knew I had AS. Some commented that they too also work till at night.
I reminded them that the context was that AS patients should be resting and not working all day and night. One lady totally got it. The other very healthy, younger, less than three children who sometimes go to relatives so she gets to rest from parenting (If I said how few children she has, people might recognise her so I won’t) told me, “Don’t forget, we also get tired.”
That was when I realised that I bore her burdens, but she had no desire to take in anything I’d said. We AS warriors and others with chronic issues (especially us without treatment yet) wake up alreadytired! It only gets worse during the day. And now I know too that my lung deteriorating means my the lack of enough oxygen reaching my blood which also causes fatigue. Again, I begin the day tired. I just wanted to be grateful that despite my problems, I’d worked too much more than usual and was happy that the day wasn’t as bad as usual. Why can’t we rejoice for each other? Your A might be better than my A if you’d always been a D student and I’d ever been an A student! It’s not the A, it’s you doing phenomenally for YOU. I celebrate that for my people. And my people celebrate it for me. My true friend above even said that she knows that if I were well, I’d do even more. THAT meant a lot. This stupid disease is holding us back a lot. (As do many other diseases!💔)
I had a bad night. Woke up and emailed my rheumatologist about pain relief-the joint injections and if there’s anything we can do my shoulder and elbow. My chest has been weird and I coughed a lot. We are given sleeping tablets that also allegedly reduce some pain so that we can sleep through the AS pain at night but nope, it’s been no match for the shoulder, elbow and last night, SI joint pain. And so, my posts will reflect that. It’s not all sunshine and roses. Finally gave up trying to sleep at 3am. We wake up tired not only from the disease, but from pain-filled nights. And we gotta keep parenting and working. And that’s ok. Everyone has trials. This is my blog, and my trial.😅
I’m still grateful that my little ones miss the struggle. My very talkative four year old asks to sit on my lap for story time. It HURTS even more. But I do it anyway. (Though I try avoid it happening daily.)
Today, I just wanted to thank those who were worried before I realised I really did have something to worry about. The ones who worry today-not only about me, but about all the challenges each of my children have. Who wonder with me who can solve each problem…Like one child (not the four year olds) with a terribly leaking bladder who doesn’t want to wear a pull up but is causing the bed for lots of washing as the ammonia smell is strong on clothing worn. I need to share that. It felt great to see a post on lack of bladder control by an aunt and to see other aunts agreeing that they too can’t control their bladder for various reasons and felt validated. I want to validate any mother in that situation. Not forgetting my shirt size angel who has outgrown baby diapers and is nowhere close to being potty trained. I see parents in my special needs groups having to buy size small adult diapers for their children, teens. We’re in this together, parent, I appreciate you. This road would be harder without you.
I’m always at a 7/10 on the pain scale. But when flare ups hit, I’m in trouble. That’s when the pain flares up.🤣Just in case there’s any reader out there like me. I used to think it meant that the disease the person was referring to comes to life. But in some cases, it means it becomes a horrible monster as opposed to a raging beast.
That’s where I am. Have been since I think Wednesday when my husband said I’m walking like I need a wheelchair. The pain tablets..no combination of them has brought any relief at all. Nothing. I feel NOTHING. No reduction in pain at all. Just my bones screaming. My bones are behaving badly when I do my exercises too. It’s as if there’s a sudden fast decline this week. Better stop now. I still want to drive etc!
As for injection side effects? 24 hours of heartburn , feeling full after eating only a few bites, nausea… At least if I had side effects AND pain reduction, I’d feel better mentally.
Nothing. I’m lying on my back. This used to help reduce the pain. No can do. I can’t focus on reading my Bible.
Flare ups stink.
Mr Arthritis follower, how are YOU doing today? I hope you’re resting from suffering!
This is not a good Sabbath. Let’s hope next one will be better. And if you’re where I am-let’s keep holding on just a little while longer. Maybe the next treatment attempt will bring relief.🙏🏾
But, I almost forgot the gifts Providence has provided me.
Show off!
I asked my son to take photos for a vlog I want to post on where I am with this disease. My sweet angel insisted that she stop her lunch and “do what Mommy is doing!”
She even took time to reassure her sister who had been overseeing her eating, “Don’t worry! I’ll be back! I just want to copy Mommy.”🤣
My youngest blessing, her twin sister… I don’t know. I don’t know if it’s the classical music that research shows has made improvements in the brains of neurodiverse children; I don’t know if it’s the supplements research has shown help (in much higher doses than we can afford. But I figure less is better than none.) I don’t know if it’s because of specific efforts to engage in speech and for her to watch the videos I make; or if it’s natural progress. But my last born has been talking up a storm.
Well, a storm compared to her “non- speaking” days! And within a few days she’s even modified her speech to be more ‘correct.’ From pulling our hands and asking for “some grapes,” she changed it to “want grapes.” If she doesn’t see what she is looking for, she names it. Remember the frustration for me as Mom when I didn’t know what she wanted? And her reaction to the word “No” is so much better. The whole world no longer knows when she’s upset with us.😊
There’s a lot we don’t yet understand about her behaviour. She only had maybe five things she can ask for-for now!! A lot that perplexes and frustrates. I’m still sad that I can’t do her hair and she can’t even handle it being washed-resulting in some funky smells and a need to shave it off. But we all rejoice in the speech that’s coming despite us putting pressure on her. It’s a huge blessing.
I was walking in the kitchen as my husband cooked, and something in my groin cracked loudly and I almost lost my balance as my leg painfully gave way. I screamed. Then laughed. (Don’t go to the kitchen when you’re not eating because you’re doing colon prep for colonoscopy! The smells will kill your.)
See, just a few minutes before, he’d told me that I was obviously having a very bad passion day because I was making a lot of noise. Groaning to pick things up off the floor, moaning when bending, breathing hard and loud. I hadn’t noticed. But he was right. Because two of my pain tablets contain codeine (causes constipation) I decided not to take them to help the colon cleaning mess do their job. I don’t want to go through this prep again any time soon! Especially having been told not to take any pain meds at all today/this morning. (They want my colon etc as empty as possible so they can see everything clearly. I’ll also be having biopsies done-as always-which are so painful AFTERWARDS!)
In the middle of the night, as I sat up supporting myself with my right hand as I got up, my shoulder cracked so loudly it woke my husband up. As I sat down on the loo, CRRACK from my pelvic area. My shoulders have also been cracking when I’m doing lat pull downs too… Given my reduced shoulder mobility and how I started getting worse each time I had cracking and pain (Like back in 2021), this is not welcome at all.
Everything is hard. I’m meant to do 30 seconds of these, three times.
When I began in August, I could do two 30 second holds and a few seconds of the last set. I can’t even complete one set of 30 anymore. And I can’t go up as high.
I mentioned how bad this was back then, I didn’t know it would get worse this fast. My back pulls me down. It’s unwilling to bend. It’s as if the whole weight of my body, like gravity itself, is working against me and I can’t breathe and end up collapsing.
It’s scary.
Watching your body give up on you is indescribable. Feeling it get worse is horrific. The pain is unbearable. I can’t wait to at least start trying to find something to slow this down. Right now, my pre-filled syringes are accumulating in my fridge. I need them in my body.
Did I tell you how the pharmacist reacted as she added up my total when I went to fetch my injections and the prep for today’s Tess? She knows me well as I always collect from that branch, “Mrs Nkomo!??? No! This is not right. I’d hate to be you!” Yeah, I hate being me too sometimes! As my husband put it, “Don’t worry about the cost of six children. Your health is costing us more than all of them combined.”
Ouch. That’s including their therapies and meds.
Yeah, being a burden and a financial cost was never on my agenda. Being the cause of worry was never my plan. Disability was not one of my goals. But unless we slow this freight train down, that’s exactly where I’m headed.
And guys, I really, really am not enjoying this prep thing. No sleep! It was actually my bladder working over time in the night because of the amount of liquid they want you to drink. Only a few times did I empty my bowel. Only NOW is that really happening…And I really, really should not have booked today’s procedures to be done less than a week after surgery. But it could be worse! I could be living in my first home as a child, where the toilet was out in the back yard. I guess I’d be using a bucket and waiting for day light to go empty it. Yuck! It could be worse.😉
One of the AS patients who died this year had a wonderful mother. Yes, she didn’t see how bad things were, thought her daughter had to just buck up and get on with it till she realised she was in liver failure, but in general, she was a loving and supportive mom and an amazing grandmother.
It made me glad that my mother figure (Step mom in law) is far away. She can’t see what I go through. She already feels so desperately worried the few times I mention it that I don’t ask how she is on my worst days because I know she will ask how I am.
Then I realized that though my biological mother wasn’t the best, that I didn’t have any recent heartwarming memories, I DO have those who care about me. Who contact me purely to check on me, not to use me. Those who send messages because they love me, not because they want something from me.
I see it in their actions. In the way they study the various conditions my children have, in how they share videos that remind them of my children, in how they try give (money) because they aren’t here to do (anything for me.)
They are my blessings.
I am thankful for every true hearted query. For every well thought out sentiment. For every, “Oh no, that means you’ll have a terrible day” after I relate something I did that will tax me or have bad consequences.
Like allowing my daughter to sit on my lap for a very long time as she made me read two books to her despite how the enthesitis in my pelvis has been raging.
My husband was saying this morning that he’s got grey hair because of me. In the past, I was sick but it was random issues, random surgeries and we were en route to diagnosis and HEALING. But now, now he knows there’s no cure at all. There’s no healing. And it gets worse… It’s knowing that we are trying treatments. Trying. We don’t even know if this Enbrel is the magic bullet or if we will have to keep trying and failing while the disease keeps on stealing my mobility from me.
It’s scary.
But we have our blessings. And we are thankful for them.
Injection number 2 was not as great as number 1. The meds stung going in, whereas the first time I didn’t feel the liquid at all. The welt was not as bad and the following day I didn’t swell there unlike last week.
But an hour later, I felt like a volcano. Sorry for the TMI but this just might help someone else who gets this reaction. They’ll know it’s not only them. Just under an hour after I injected myself, I needed the loo for a number two if you get my drift. But before I could get up from the loo, I felt this awful burning fire going up from my groin and making my belly feel like it will explode.
Fire spread up to my navel, then up to my sternum. I was in excruciating pain, I almost hobbled out to my son to ask him to take me to hospital. I’ve never felt that before. I was on fire inside. And the movement I had had was very loose. Sorry again…
I couldn’t bear the pain yet didn’t feel I should go to the hospital. I googled kf Enbrel can cause stomach problems and found this.
What would they do at hospital seeing as this was normal anyway? So I sent voice notes to maybe five people, and begged them to pray for me.
One told me my voice frightened them. A male. Another asked if I wasn’t sure I shouldn’t go to hospital. My mom in Zimbabwe-she felt utterly helpless and asked where my husband was.
Speaking of husband…He’d commented that it was my day to do my injection and asked if I was ready. I told him, “You know, I don’t know. I don’t know anymore. I need to try. But some with reactions get worse with each injection. What if it becomes worse than just the thigh issue and mild headache?”
Boy was I right! But I didn’t expect it at all! Not this! And here I am blogging two days later and my stomach isn’t doing great.
They said I should write a book 