Tag Archives: chronic illness

Health Update Dec 2017/Jan 2018

18 Jan

And here we go again! This was a very rough four weeks for me in so many ways. I am praying that these next four are easier to get through.

fightinglymemigraines

Overall Health: I don’t feel like there’s been improvement this month, what with taking the DMSA (chelation). But my doctor is going to have me start H2PLX,  to see if  it will help with my chronic fatigue. I did learn that I’ve got Epstein- Barr Virus and my doctor and I have discussed my adrenal fatigue more these past few visits.

Dec 22- felt good today. Some fatigue. Migraine hit in evening. Front of neck hurt too. A bit of mood struggles. Fibropain flaring in yet and hands. Left calf tense all day
Dec 25/26 – fibropain flaring, especially in hands. Migraine that’s hard to get rid of. Mood struggles the 25th. Felt good till early afternoon on 26th. Restless achy pain in evenings. 
-Took dmsa the 26th, to avoid taking it on Christmas day. –
12-27 fatigue. migraine in evening. fibromyalgia flared in afternoon/evening. Hurt to open my hand all the way. Calves cramped most of the night as well. Woke up on the 28th, elbows hurt. Hands swollen. Calves still tight.
12-28 started coq10, 10ml 
12-29 have noticed that crossing my ankles left over right causes spasms/cramps in left foot/calf. 
12-30 pretty good all day till early evening. Severe migraine to a 9. Fibropain flaring. Day 26/27
1-2 started monthly. Felt some better than the day before but major fatigue. In evening, fibromyalgia flared bad. Migraine. Front of neck. Jaw. 
1-3 fatigue. Mental struggles- stressed thinking about errands/leaving the house. 
—have had a hard time getting my brain to focus for writing/editing lately— napping a lot more than normal this past week–

Migraines: These increased again – I had several debilitating nights in a row, where I couldn’t get the pain down. There have been half-days where I only had a level 4.

Sleep:  Most nights, I’m still sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.

Memory/Disassociation:  I had a few mild cases of anxiety. I haven’t noticed any changes in my memory. No disassociation.

Vision: I think I only had vision loss once this past month. I did have the sparkles in my vision a few separate times though.

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“I can feel the emotional effects of so many nights of severe flare ups/crashes. Either tears or anger are imminent”

 

Fibromyalgia: One of my biggest struggles this time around. My left calf is consistently tight/cramping. As long as I don’t do too much with my hands (!!), they have been good overall. But the overall, moving fibropain has been intense.

TMJ:  This is still a pretty constant pain. The left side tends to hover around a 4/10, while the right side stays around a 7 or 8/10. The front of my neck hurts/tight at least a few days a week. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples.

Fatigue: Like I already said, this was (and is) bad. I’ll have days where I feel pretty good, except the fatigue is weighing me down.

Weight Loss: I have only weighed a few times. But I haven’t been strict on my diet as well as not being able to get up and moving much lately. I am really hoping that changes soon.

Mood: This has been all over the place wonky. I am going to increase xiao chai hu tang this week, as it seems to help even this problem out.

Bladder: This has, again, been a struggle this month.  Frequent trips – suddenly urgent trips. ugh.

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snuggle time

 

What I’m currently taking:

Vitamins/Supplements: A, Ashwagandha, B2, B complex, Berberine, Butterbur, Calcium/Magnesium, Chaste Tree Berry, Ceanothus, Coq10,  Complete Mineral Complex, DMSA, D3, E, Feverfew, Fibronol, Horse Chestnut, Iron, Iberogast, Noni Fruit, St. John’s Wort, Xiao Chai Hu Tang. and Soon – H2PLX

tinctures : Pulsatilla, Belladonna

essential oils – peppermint, lavender, frankincense, Doterra blends – Motivate, Peace, and a tension one that I can’t remember the name of

Clonidine – prescription pain pill

~Laura

Health Update Nov/Dec 2017

19 Dec

 

fightinglymemigraines

 

Overall Health: Fibromyalgia flared, causing more tears than normal. I had partial vision loss two times. Fatigue didn’t ease much after the IV. I’ve struggled with keeping an even mood the past few weeks. I have started DMSA (chelation) to get the high levels of lead out of me.

11-15 went to Dr Vogel. Stretched back/hip/neck, worked on jaw too. Started xcht again, 1/day
11-16 started fibronol 1/day
11/19 increased fibronol to 2/day
11-22 nauseous, migraine starting am. Traveling to bend
11-23 bad fatigue and brain fog. Needed nap early afternoon. Fibropain flared. Minor pain for day 15
11-25 bad migraine late am, up to an 8 that wouldn’t go down for a few hours. Fatigue. 
11-27 tired but feel pretty good. Energy. Jaw hurts. Fibropain flared a bit last evening. 
11-28 IV with amino acids. Fatigue. Brain fog. migraine flared in afternoon and evening. Fibropain flared late evening
11-29 fatigue. Nap in early afternoon. Some sparkles in vision. Migraine
12-3 flared in evening. Fibropain especially bad in left calf and ankle. Fluttering pain in feet. Restless pain. Migraine trying to come. Day 25 also, full moon 🌕
–mood a bit funky all week
12-12 severe cramp in right calf early am. Tight and sore all day and the next. 
12-15 anxiety before/during running errands
12-16 traveled in afternoon, movie in evening. half vision loss in left eye for about half an hr. Severe migraine hit, was able to SLEEP it off though. 
12-17 woke up feeling pretty good. Fatigue. Only some brain fog. Exhausted by afternoon. Some mood…issues in evening

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Getting the needle in was – again – painful! ugh.

Migraines:  While I’ve had a few level 10 ones, I’ve also had quite a few days where I didn’t need ANY clonidine (pain pills). SO possibly, some improvement?

Sleep:  Most nights, I’m sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.

Memory/Disassociation:  I had anxiety running errands last week. I haven’t noticed any changes in my memory. No disassociation.

Vision: This happened twice this month, but I don’t get as stressed when it comes on, as I used to. A big part of this is, it doesn’t always mean that I’m going to be ‘dying’, like it used to. As long as I eat, take everything I can for it and lay down somewhere, I can normally avoid the extreme migraine.

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Abby made it on a friends’ instagram! SO adorable. 

Fibromyalgia: This has settled in my elbows and still flares in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. Had a severe cramp in my calf (like I hadn’t had in months) that took a few days to recover from. Both calves are tight/hurt/mini cramping majority of the time. Feet hurt/shooting pains if I don’t get them up soon enough. Frequent achy/restless in the evenings.

TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch. I have started going to my bodywork doctor (once a month) again and am hoping to really start seeing improvement in my jaw!

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This is what exhaustion and pain look like. Don’t be deceived by how someone looks – so much pain can be hid with a smile.

Fatigue: Once again, this was a major problem for me. I’m thinking a big reason for it, was that we did amino acids push at the end of my IV last time, instead of the poly mba (or is it mva?)

Weight Loss: I have lost about a pound for sure. I didn’t weigh from mid October to mid December. But I am going to get more focused on this again – including being strict with my diet and trying to move more (even if that is just getting Abby on some more walks!)

Mood: This had stayed better until the past few weeks. I’m sure it’s connected to the fact that I ran out of Xiao Chai Hu Tang and am now only taking half my normal dose.

Bladder: This has, again, been a struggle this month.  Frequent trips – suddenly urgent trips. ugh.

~Laura

How have you been feeling this month? 

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Chronic Illness Silence

15 Dec

Sometimes I feel that there is a gag stuffed between my teeth, stopping me from talking about the physical trials I go through. I can easily say something generic about having a rough day – but go further than that and the gag gets replaced. The sicker I have gotten, the more I have felt this. I have become, over the past dozen years, self-conscious about how much/often I talk about my health problems.

 

silencechrncillness

 

Photo by Kristina Flour on Unsplash

Do I share too much? Do I sound like I’m whining? Do I ever sound like I’m comparing my pain with theirs? Do I sound like I’m making it up? Do they believe me? Or do they think I’m just seeking attention? Is that why I share so much, because I want attention? 

All self-doubts rise like a tidal wave when I go down this route. I suddenly don’t know who I am anymore – it’s like I get caught in the confusion, lost, apart from myself.

But that – that is actually a good way to describe what living in a chronically sick body feels like. I am lost – apart from myself. And I’m crawling on bloodied hands and knees to get back to me.

But, that’s off point. Why do I let people put this gag in my mouth? THIS is my reality. No, I’m not climbing the corporate ladder (the last time I wanted that I was about 12 years old). No I’m not baking like crazy in my own little bakery with my best friend at my side like we’d planned after culinary school (thanks Lyme for taking that dream away). Neither am I a preschool teacher or a nanny anymore. No, I’m not a mom either, chasing toddlers and running kids to soccer practice. Not a published author of a novel that’s helping bring in money to pay for bills, either.

Instead, I’m struggling to form sentences some days. I’m trying to do anything I can to keep the TMJ, the fibromyalgia, the migraines, the fatigue etc etc, from flaring. I’m taking more pills than my parents do every single day. I’m isolated from anything that can make me flare – over-stimulation, foods, lights, etc. I have to take care of ME to know that I’ve done everything to stop the terrible ravages of the infections that are determined to take over every cell and speck of me.

Saying ‘I’m fine’ is starting to feel like a lie. Even when I’m having good days. I feel like I’m bowing to the peer pressure.

Don’t talk about it. Put your mask on. Everything is all right.

Perhaps it’s too many nights of rough sleep, or the shuffling between doctors’ that has me up in arms about this. But should my doctor’s office really be the main place I can feel free to SHARE?

Yes, I do have some lovely friends and family that I can spill my guts to and they are amazing. But the worries – the doubts in my head – those are on repeat even then.

~Laura

 

 

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