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Health Update- April to August 2020

Oh dear, I haven’t done a health update since March! It always makes writing these out a bit more interesting when such a length of time has passed. So because of that, I’ll just tell you that from March until around the end of June, I was struggling with debilitating fatigue and joint pain.

And here it is now, nearing the end of August and I’m determined to finish this! Part of the problem is that when I have been feeling well enough to be slightly human, I’ve been focusing on other projects instead of SGL. I really do want to change that and today is the first step in doing so.

SO. Yeah, debilitating fatigue has carried through this latest month as well. With some migraines off the charts.

Overall Health: Ups and downs these past months. But, bad fatigue and getting hit with severe migraines.

6/1-felt tired when got up in am. took hr nap, felt a bit better. head didn’t hurt much, felt well enough to go to dog park. fatigue hit early afternoon. migraine at @ a level 4 at 3pm. calf hurting pretty badly, almost at cramping point in evening. Some migraine but not that terrible. -i’ve noticed that i’m not as itchy or flushed. hands still swollen most mornings. since starting the adrenal support, i think i’ve felt a wee bit more energetic w/ a bit less brain fog.

2nd- very strong fatigue. took 2 naps and didn’t do much at all, all day b/c of it.

3rd-IV late am. strong fatigue all day but antsy energy in afternoon – normal after an IV. migraine kicked up in early evening, calmed down though. YI pretty much gone, heat rash chill today, brain fog strong, mood a little improved. allergies not so bad either. increased adrenal support to 2/day. needing ice pack at bedtime

-think i need to decrease the Yin Chao to 1/day, see if upset stomach eases

4th-woke up w/ migraine, stayed all day. only taking 1 yin chao, helped stomach.

~days in between- lots of naps, fatigue, brain fog. some mood struggles too

8th-started molybdenum. low migraine in am but was able to go to costco. bad fatigue hit on way home, lasted pretty much the rest of day. long nap and doing nothing.

10th- felt a little better, little bit more energy even tho the fatigue kept me blurry brained and was still down most of day. dogpark in am, migraine increased in evening.

-started progesterone creme on 11th. have still had strong fatigue but have had strange energy a good portion of both days 11th and 12th. calves are really painful, esp left. got heating pad that helped. brain fog strong. -fatigue has not been as overwhelming as it was in june, pain overall has diminished. still very tired & days of pain though. occasionally more sensitive to light.

9th- itchy in evening. calves are in a lot of pain, twitches on right side. some in left hand too.

13th-felt pretty decent today, til @430. got hit w/ overwhelming fatigue. lasted rest of day. migraine kicked up to an 8 minimum. ice pack at bedtime for first time in @ a week.

16th-felt pretty good all day. got quite tired in afternoon but not awful. stomach upset after dinner,not sure why? fatigue has increased since starting olivirex again (on the 17th). upset stomach many evenings.

22nd-strong fatigue, took nap in afternoon. lost vision in left eye at 830, ice pack, pain pills and short nap helped but then migraine came in. went to bed at 10pm. first time in a long while that i’ve been hit with one of these.

eyes still blurry and kinda painful the next few days. tired. achy. weak.

25th- vision loss again in late evening. cried. pain pills, ice pack, slept about 3hrs in evening. next day took 2 long naps, eyes still hurting a lot, achy body, just sluggish all around.

27th-felt better today, no nap. was able to write/read w/out too much trouble but eyes still painful and need glasses more than normal. completely on LH diet as of monday.

august 4th-good energy in am, minimum pain. fatigue hit @ noon, 11/2 hr nap late afternoon. joint pain kicked up early evening, migraine after that. close to cycle.

9th-fatigue and migraines the past 3 daysish. naps. not much other than ice packs, helping with migraines.

Migraine: They aren’t responding to normal treatments as readily. And I’m in the midst of one that’s been going on for almost a week now that I just can’t get rid of completely. I did have an appt with a neurologist for the first time in years and now have some new prescription meds to try and get these things under control

Sleep: I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I do frequently take involuntary naps however. And I’ll add that I never feel rested after sleeping. – this hasn’t changed at all since march.

Memory/Brain Fog: This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift for quite a while. – again, this hasn’t changed.

Vision: Scintillating scotomas have made themselves known the past month odd. my eyes do hurt fairly frequently now and sometimes just don’t want to focus right away.

TMJ: My jaw has been tight/tense more lately and has been popping every so often. So this has increased although it’s not where it used to be. I’ll add that i’ve not been as diligent about wearing my night guard when I nap like I know that I should be…

Fatigue: This has been my biggest, most constant struggle for months now. My body just drags and aches every day.

Fibromyalgia: This has eased a bit lately. still present in joints though – especially in elbow and knees.

Weight Loss: Not much, but a little! And i’m excited for that.

Mood: Mostly this has been good…

Digestion: This has been perhaps, a teeny bit better since going on the Low Histamine Diet at the end of last month? I was hoping that there would be more noticeable improvement in this area though.

Here’s a list of symptoms that I don’t have as often lately:

-pain in hands/wrists

-severe calf cramps

-nausea from lights/sounds

-falling asleep standing in lines

-exhaustion from standing in lines

-jaw popping/getting stuck

-nightmares

-excessive itchiness

So, I guess that I’m still in the midst of that flare that I mentioned back in March. Which explains why I’ve been becoming more of a hermit, I suppose.

~Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic illness, chronic migraines, chronic pain, chronic pain management, fighting lyme disease, health, health update, lyme disease, natural treatment for lyme, tmj

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Categories Uncategorized

Health Update January 2020

30 Jan

Hello again friends, thanks for coming back to SGL. It has been several months since I’ve done a health update and I honestly debated about continuing them. But, as I decided the beginning of last year, I need this monthly posts to help me keep an idea of just how I’ve been. It’s so very easy to get lost in the day to day haze of pain and brain fog that I can’t recollect the better days – or the worse ones.

The other thing I wanted to do was to change up the format for them but I couldn’t figure out a way to do that, that would still provide the information that I need (and that I want to share). If you have any suggestions, or a blog to recommend that does regular health updates, I am definitely open to hearing them.

fightinglymemigraines

As a look at Overall Health, it’s harder to peg this one down since it’s been so many months. I have had good stretches alongside ones that I barely dragged through each day. I do feel like I’m in the middle of a better stretch – this would mean that my fatigue isn’t so overwhelming, migraines are calmer/respond to treatment, brain fog tends to be a little less, etc. And let me tell you, I’m so thankful for this pause in extreme pain.

Let’s move on to the rest of the update, shall we?

Here are the notes that I kept on my phone:

Nov 30 – exhausted and headachy all day. Took 2 short naps. Cycle due any day. Hungrier than normal past few days.
Dec 2 -mega fatigue all day. Took 2 naps. Migraine kicked up bad , hard to get the pain to ease. Tylenol, Bayer, ice pack and a nap finally did.
11th – woke up with fatigue and migraine, pretty severe till @2pm. Felt better but still both present all day. A bit moody in evening
12th – woke up pretty good, pain hit @2pm, finally eased @4. Left calf and foot hurting and painful cramps. Poor circulation in legs recently . A bit moody in evening again.
14- woke up exhausted. Fatigue staying all day so far. Some head pain as well
Dec 29- very busy day in bend. drove home in evening. No major migraine/fatigue/crash whole time we were there. Did really well
Dec 30 – woke up very tired but ok. Took nap early afternoon. Ran errand. Felt really good early evening. Aches and migraine kicked up in evening. Soaked feet and took tylenol, eased it.
Dec 31 cycle started. Felt pretty well all day, tired but not terribly.
JAN 1ST- cycle aches all day. Lazy day with minimal activity. Joint pain increased in evening. Went to bed with ice pack on knees. It’s been weeks since I needed that

Jan 14 – introduced bananas back into my diet. Felt good in am, very tired by noon. Pretty short attention span all day. About an hr nap after lunch. Exhausted and achy pain suddenly in evening. Was able to calm it down decently with ice and tylenol.

Sept 12, 2019

Sept 24, 2019

Migraine: the severity has decreased most of the time. Sometimes, I get sideswiped by a particularly nasty one however. I’m still taking 4.5 mg of the Low Dose Naltrexone every night and I believe these have helped a lot.

Sleep: I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I do frequently take involuntary naps however.

Memory/Brain Fog: This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift. Sometimes I won’t notice how bad it is until I leave the house/try holding a conversation with someone

Sept 26, 2019

Oct 18, 2019

Vision: I have had several scintillating scotomas, and do occasionally have times where my eyes just don’t want to focus.

TMJ: My jaw doesn’t pop very often at all anymore and mostly, this pain has diminished. It’s never gone completely, but many days it’s not so severe that I am distracted by it.

Fatigue: I am able to push myself more than I have in years, probably. But, of course, I do have days where I just am relegated to the couch because I am so fatigued. Or that I just need to space out what I plan, to give my body the rest it needs. – this hasn’t changed much from my last update back in August

Oct 24, 2019

Nov 10, 2019

Fibromyalgia: This is a persistent, constant pain. Especially in my knee, elbow, ankle joints. Frequently it rears in my hip as well. I have noticed the random twitches that I get have been increasing over the months.

Weight Loss: Not at all. It’s been more of a weight gain issue. Very frustrating.

Mood: This has been very back and forth lately.

Digestion: This has been good for me – which means, still not where it should ideally be, but for me, it’s okay.

Dec 14, 2019

Earlier this month, I did some blood tests and am waiting to talk with my doctor about the results. I am, of course, hoping that they will reveal just what is going on inside me and will give us a path on which to base the new protocol that I’m going to start.

Over the month of December, I cut out ALL sugars – even natural – in the hopes that it would ease some of the inflammation in my body. But it didn’t seem to do anything, so I’ve been able to add bananas and honey back in. I’ve been adding them back in very slowly, trying to keep track of how I react. I am looking forward to adding strawberries back into my diet soon!

Jan 7, 2020

Jan 13, 2020

I hope the pictures (that I grabbed from my Instagram account) give you maybe a better idea of the ups and downs these past months. Due to a lot of negative comments, I’ve really cut back on the ‘pain’ photos that I feel tend to capture the level of pain that I’m in, so it makes it a bit harder to really get the point across. Because of that, I’ve noticed that I don’t share quite as much on IG as I used to. But since it’s still the biggest part of my life – this fighting for my health – I’m going to try and share more of both the dark days and the better days. I’d like to also increase how much I talk about chronic illness here on SGL. If there’s any topic you’d be interested in reading about, please ask!

If you’ve made it all the way to the end of this post, THANKS! I appreciate you giving me some of your precious time,

Blessings,

Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic migraines, chronic pain, fighting lyme disease, health, late stage lyme, lyme, lyme disease, migraines, natural treatment for lyme, symptoms of lyme disease, tmj

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Categories health

Health Update August 2019

10 Sep

Hello again friends. Thanks for stopping by SGL for this month’s health update. Fighting Lyme Disease is definitely the hardest thing I’ve done – and that will probably always be true. This journey to health is so up and down that it’s easy to get disheartened. Thankfully, I’ve been coming out of the crash I was in and have been able to enjoy the last bit of summer. As well as start preparing for a new addition to our little family come the beginning of October.

fightinglymemigraines

Overall Health: There’s improvement in the wind, folks. I stopped taking the atovaquile/Malarone and my fatigue diminished greatly.

8-5 tired all day and dealt with keeping migraine down BUT, was up and about a lot. Had odd energy, pretty clear brain too
8-6 crushing fatigue late am on. Some fibro in feet and calves.
RELATED to: eating corn? Overdoing it yesterday?
8-7 better, about halfway between the 5th and 6th. Still fatigued but up and about.
8-8 low energy and so fatigued again
8-17 Started cordyceps 1/day am. Decent energy, tho tired in am, fatigue hit afternoon but didn’t nap! Fell asleep at 9pm.
8-20 increased cordyceps 2/day. Fatigue still very strong.
8-23 drove to bend. Seized back had eased enough from Wednesday eve. Felt pretty well all day, took short nap late afternoon.
8-24 – stomach upset off and on all day. Decent energy. Some fibro flaring in my feet.
Since stopping the Malarone on the 22nd, fatigue has eased considerably. Rash on face is still present, flares every 4 to 5 days probably. (Strange)

Migraine: One near-nuclear migraine with several that were really hard to get the pain level down. But, I really am surprised at how these have minimized. Now, before you get too excited, I do still have pain every day. But there’s been more days that I didn’t take any Clonidine til evening. I am chalking this improvement up to the 4.5 mg of the LDNs that I take every evening. (Low Dose Naltrexone).

Sleep: I’m getting more like 8 to 9 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I haven’t been needing naps daily either, which is so very nice.

Screenshot_20190910-112456_Instagram

Memory/Brain Fog: This has improved a little bit more – I’m noticing I’m able to recall words/names easier. But when the brain fog hits – man, it hits. *same as last month

Vision: The scintillating scotomas have eased since I stopped the Malarone. I did start to lose my vision once this past month.

TMJ: It’s been hurting a bit more but I still am blaming that on the fact that when I nap, I don’t put in my night guard. It has been quite tense this past week though.

Fatigue: As I said, this has decreased even more. I am able to push myself more than I have in years, probably. But, of course, I do have days where I just am relegated to the couch because I am so fatigued. Or that I just need to space out what I plan, to give my body the rest it needs.

Fibromyalgia: Thankfully, this has eased as well! I only get the nerve pain in my feet when I’ve been walking a lot (or have sugar). My calf has calmed down SO much. My back has seized up twice this month but I think that’s because of my weight.

Screenshot_20190910-112524_Instagram

Weight Loss: Nope. But, I’m trying to get out and walk more and do mini workouts when I feel well enough to.

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it. *I’m leaving this up because I’ve increased this to 2 tsps a day and it’s so worth it.

Digestion: This has been a little more touchy lately. Out of the blue my stomach will get really upset. I have some ideas of what maybe I’m not digesting well but…

Now, if you’re interested in what prompted me to stop taking the Malarone after a month of taking it, I’ll tell you. My doctor really wanted me to stay on it but a few days before heading to visit my parents, I was thinking about it and the 3 hour drive and all, and I realized that I just couldn’t do one. more. day. of taking the pills that were making me feel like I was going to fall asleep at any moment. Or that were causing major brain fog, increased scintillating scotomas and increased fibropain. I debated about it, researched it, but decided that I know my body best, and that I was just at the end of what I could stand. Within just 12 hours of stopping, I could tell a difference. And then, just days after, there was even more of a change. I’m so glad I remembered to be my own advocate.

~Laura

How are you feeling lately?

Tags: chronic fatigue, chronic fatigue syndrome, chronic migraines, chronic pain, fibromyalgia, health, health update, late stage lyme, lyme disease, natural treatment for lyme, symptoms of lyme disease

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Categories health

Health Update July 2019

3 Aug

It’s funny how the hardest part of writing these updates is this introduction. I rarely know just what I want to say right off, so I end up staring at the page, wishing I could just write something, because the rest of the post is done and then I can finish it off! Alas, intros are hard. Apparently. Maybe not for you though.

Anyhow, I’ve gotten this one written up at last.

fightinglymemigraines

Overall Health: I think I can say that, yet again, I’m doing better. Fatigue, while less than it was, is still a major struggle. My fibromyalgia has kicked up in my back and calves/feet again.

7/22- increased LDN to 2.5mg a day.
7/24- started atovaquile, taking at breakfast – before 9am. Felt decent all day, worked in yard am. Tired in evening but no big crash
7/25- fatigue all day long. Felt good aside from it. Couldn’t nap. Migraine tried to flare mid aft.
7/26- felt well, cleaned in am. Fatigue hit around 11am. Related to new pills?
7/29 increased LDN to 3 mg. Slept better, fuzzy brain early am next morning
7/30 – felt good in am, cleaned house and worked out. Tired in aft but not overwhelming. Napped after dinner. Migraine kicked up to a 7? Back/left calf hurt evening and all night.

7/31 – ran errands in morning, felt ‘off’ and was sensitive to smells while out. vision loss and nuclear migraine early afternoon, slept/cried/iced for about 4 hours, felt decent enough to get up and make dinner.

8/1 – fragile and dealing with aftermath of nuclear migraine. trying to keep the migraine from flaring again

Migraine: Only one nuclear migraine (and that was the 31st!) Mostly, the pain level gets to an 8. And hovers. I’ve had a bit of the odd visual auras (which I found out at my last dr appt that it’s called scintillating scotoma) but not near as much as last month.

Sleep: I’m still getting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow. But there was about a week where I barely needed the ice pack. *yes, this is the exact same as last month!*

Screenshot_20190802-120408_Instagram

Memory/Brain Fog: This has improved a little bit more – I’m noticing I’m able to recall words/names easier. But when the brain fog hits – man, it hits.

Vision: The auras have eased. I just talked about this in the migraine section – go check out that article, it’s about these colors/blur/black spots. Well worth the read.

TMJ: I’m happy to report that my teeth don’t ache very often anymore. I’ve still been taking naps without my night guard (shame on me, I know) and that is when my jaw is most tense but… well, I figure that’s my fault. It only pops a few times a week now.

Screenshot_20190802-120336_Instagram

Fatigue: This has decreased a bit, it still hits me and when I take naps they can be a few hours long, but I’m not taking them every day. And I’m not falling asleep directly after dinner either –well, mostly. Overall, I’m able to do more, I just have to space things out and be aware that I need rest times in between.

Fibromyalgia: As I said above, my back is hurting again. And, I still have my calf aching/cramping/burning pain fairly regularly and my feet do these ‘great’ little nerve freaking out sessions.

Weight Loss: Minimal, but I’m determined to focus on this again!

Digestion: This is still, thankfully, at my normal.

Screenshot_20190802-120351_Instagram

As my notes said, I started taking atovaquile just over a week ago. I haven’t noticed any negative or positive side effects from it yet, so I’m waiting to hear back from my doctor. She has me on it for 30 days, just to see if we can kill off some of these buggers. (no, I’m not very technical, sorry.)

I’m still taking NP Thyroid every morning. As well as LDN every evening. Each week I’m increasing that dosage until I hit 4.5 mg.

Since I can’t remember the last time I updated my full list of supplements/vitamins, I’ll share them with you today:

Andrographis

Bearberry (I’m finishing up the bottle I have and then stopping)

Butterbur

Berberine

Calcium

Chaste Tree/Vitex

Complete Mineral Complex

Feverfew

Fibronol

H2PLX

Horse Chestnut

St. John’s Wort

Turmeric

COQ10

Iberogast

Xiao Chai Hu Tang

Liver

And that’s it folks, if you’ve got any questions, I’ll do my best to answer them. I did want to share the post that I wrote about the scintillating scotoma (before I knew what they were called).

Thanks for stopping by SGL today,

Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic illness, chronic migraines, chronic pain, fibromyalgia, fighting lyme disease, health, health update, lyme disease, natural treatment for lyme, scintillating scotoma, symptoms of lyme disease, tmj, visual auras

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Categories health

The Darkness in my Vision

9 Jul

On the edges of my vision there’s a shimmer.

A flash of color.

A vagueness.

A hint of the darkness to come.

I’ve learned that if I keep my eyes forward, it is somehow light enough to ignore. But if I look around, it roars out at me as a lion upon its prey. The strength of its presence causes my whole body to react. My head starts a low pounding, my stomach clenches and my knees feel weak. If left at it’s height, it will take over every part of me, leaving me writhing in pain and fear.

drknsssinmyvsion

Photo by Sebastian Muller on Unsplash

So I take the easy path. I fix my eyes straight ahead and breathe deeply. I push it back down. And try not to imagine the colors – the rainbow of them arching out from the center that is a blinding white. I try not to think of the blurriness that makes everything around that color, ‘other’. Something other than what it is. Something that no longer makes sense, as if it’s from another time or place. Something that leaves it’s edges behind with every blink of my eyes.

As my breathing deepens and the shimmer lessens, I forget about the urgency of doing more to avoid it returning and blithely go about my day. The lion has been tamed and the prey has been rescued.

For the moment, at least.

Once again, another head turn, a glance too fast for my eyes to adjust and there it is again. But this time, the shimmer is brighter. Bigger. And somehow, darker. The colors have turned deeper shades of themselves, the blinding white has taken on a ferocious tint. As my head pounds again and my joints turn to mush, I remember with clarity that this has happened already today. My hands will shake if I let them, from the fear that is dogging me now, but I harden my will and do what I have to do to avoid the nightmare that just might come anyway.

The darkness is like the lion in the show – the audience blissfully believes it to be tamed and so will draw nearer it than they should. But the trainer knows that it’s only biding its time until it can strike when the trainer has turned his back and let down his guard.

The darkness is coming.

~This is a description of the visual auras that I’ve been getting off and on the past 14 years. The nightmare that comes after this, is a complete loss of vision in my left eye for about half an hour and then such a vicious migriane (I’ve taken to calling them nuclear migraines) that I’m left crying, laying with an ice pack on my face and if I do have to move, I end up crying even more. These are the ones that make me wonder if I will live through it; they make me wonder if there will ever even be an end to the pain. So there’s good reason to avoid these as much as possible. Of course, sometimes, no matter what you do, they come anyway.

~Laura

Tags: blindness due to migraine, chronic migraine, chronic migraines, health, lyme disease, migraine, migraines, temporary blindness, vision loss, visual auras

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Categories health, Uncategorized

Health Update Apr/May 2019

30 May

All I can say is at least I’m getting this up before June starts. My levels, and types, of pain have made getting this post up such a bear. fightinglymemigraines

Overall Health: It’s been a roller-coaster ride these past six weeks. That’s really all I can think to say about it. I went from doing pretty well during the days and crashing so-so in the evenings to….rough days and passing out at 8pm because I just can’t stay awake any longer. (only to wake up an hour later and not be able to sleep again til midnight.)

Apr 16 started doxycycline   Apr 30- good energy most of the day. 1 mile walk plus housework. Migraine kicked up afternoon, clonidine calmed. Started thyroid 9am. Tiny bumps on face in evening, not sure why?
May 2- decent energy in am, hit with fatigue around noon. IV in afternoon.
May 3- felt pretty well today, fatigue hit afternoon. Tiny bumps on face again this evening and a tad bit last night.
May 5- bumps again today, also around collarbone, some itchy. Fatigue early afternoon, napped but then foggy and dehydrated rest of afternoon. Hungry like crazy in evening, migraine kicked up a lot.
Observations: fibropain is less intense. Migraines are still sharp and increase a lot in evenings. Clonidine helps, overall but not always. Evening hunger is common. Fatigue is light in am but hits mid afternoon at least. Needing a nap most days. Foggy brain after.
Went off of thyroid on may 11th to see if it was causing the rash on my face. Fatigue hit hard whole of following week, rash still present although not as bad? Fibromyalgia flared the same week. Started thyroid back up on the 17th.
May 17 – visual aura and nuclear migraine.
May 21 Fatigue has eased a little bit since Sunday. Felt off all day, fending off another crash this evening

Migraine: SIGH. The pain has been quite terrible lately, with one full blown visual aura/nuclear migraine this past Friday and three more attempting to blow up.

Sleep: I’m hitting 6 to 7 hours a night, with at least 2 wakings. Majority of them I need the ice pack on the pillow. Several I’m having night sweats -even with the ice, joy oh joy – and of course, never waken feeling refreshed.

Memory/Brain Fog: Brain fog has stayed around again. It’s kept my ability to focus on things at a minimum.

Vision: I have had ~~four~~ FIVE visual auras in the past week. That’s about four more than I’ve been having every few months. I’ve noticed that even in between lately, my eyes aren’t quite right. Looking at black text/white background can be difficult…

TMJ: I have just realized this has eased. My teeth aren’t hurting as much or often as they used to. It has only popped a few times in the past few weeks. My jaw still regularly hurts but overall, this has definitely improved.

Screenshot_20190529-083154_Instagram

Fatigue: This is still my biggest current struggle. It can go from just marginally dragging to laying me out and making me fall asleep within half an hour. (this makes for interesting planning of errands…)

Fibromyalgia: In a way this has decreased slightly. But my left side (top of head down to toes) frequently aches. If I stay away from processed sugar, the fibro stays down –remind me of this next time I’m tempted to cheat and have sugar.

Weight Loss: Non-existent.

Mood: This has been a bit topsy-turvy the last little bit but I’m sure it’s because of the levels of pain I’ve been dealing with. And hormones – hormones out of whack are fun. Eesh.

Digestion: We’re back to my normal! woohoo!

Like I said in my notes above, I went off the Thyroid for several days to see if the mostly invisible rash that has appeared on my face was connected to it. I’m fairly confident now that it’s not, but the rash is still there (at least it is mostly impossible to see!) and I’m not sure why. I’ve also been trying to tell if the doxycycline has helped any of my symptoms, but really, with how I’ve been feeling, it’s so hard to separate the pain, you know? Even doing this update, it’s still all so foggy to be able to tell. I’ve also only been on the doxy for a month and a half, so I doubt that’s long enough to be able to tell anyway.

I will add about the Thyroid though, that I think the fatigue was going down after I first started it – so I’m hoping that will start happening again soon. I mean, I was taking Abby on a mile walk in the mornings, doing some house cleaning and making yummy dinners. Which, for me, is a pretty full/energy burning day. And now I’m barely getting her to the park, doing maybe 20 min of light cleaning and sort of maybe throwing a semblance of dinner together. Augh. I know this journey of healing is an up and down, switchback type of road but I’m ready to be through this particular rough stretch. Especially since I know that the pain in my left side would disappear if I was able to lose some weight.

~Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic illness, chronic migraines, chronic pain, chronic pain management, ebv, exhaustion, health, health update, lyme disease, symptoms of lyme disease, tmj

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Categories health

Mar/Apr Health Update

19 Apr

Well, this has been waiting for me to finish it for about a week now. My ability to focus has been really quite terrible lately, you guys. It’s a subtle thing though. Since I’m completely in control of my schedule, I can flit around to different things without realizing just how quickly I move on to something new… But, to move on to more exciting news, I’m doing some better! Read on!

fightinglymemigraines

Overall Health: I would say that while I’ve had some low lows, I’ve done pretty well this past month-odd. Daily, noticeable pain and fatigue but not everyday has been debilitating. I keep seeing more glimpses of ‘me’ in the mirror – you know, when I’m not asleep or laying on an ice pack.

Migraine: Only one visual aura and nuclear migraine this time around (and that while on vacation of course). I attempted going off clonidine for a few days but that didn’t work as well as I thought it would. I’m still trying to get the edge off the pain.

Sleep: I’m getting about 8 hours with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed. OR I’ve taken such a long nap during the day that I’m just not tired enough at a reasonable hour. Eesh.

Feeling like half of myself that morning

Memory/Brain Fog: Brain fog has stayed around, sadly. It’s kept my ability to focus on things at a minimum.

Vision: I only had one visual aura! The beginning of March I did have a strange… quality to my vision at times but that has since gone away.

TMJ: It pops only occasionally now but still aches so much that my teeth hurt daily. The front of my neck has started hurting again as well. I really need to get in to my bodywork doctor soon.

Fatigue: sadly, this has stayed strong. Naps are pretty frequent, ranging from twenty minutes to three hours. Eesh. Mostly though, if I space my activities out, I do pretty well. I have gotten back on the liver, daily, and it is definitely helping.

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Fibromyalgia: It’s decreased slightly. My left calf is still tense/self flexing throughout the day and occasional cramping in my feet. Most of the time I can kind of ignore it, although when it settles into my knees like it likes to do, it’s harder to ignore (like right now)

Weight Loss: Oy. I was losing steadily and slowly and now it’s just to the point where I’m hoping I can start working out again so I don’t end up at the weight I was when I first started losing a year ago. Augh. < this is the same as last month! Oy.

Mood: Well, this has evened out again – without the use of Xiao Chai Hu Tang.

Digestion: Much improved. I’ve even increased the amount of vitamins/supplements I take and my stomach is still doing fine. I’m so relieved.

Since I wrote the above, I’ve been in to see my main doctor. It was a good appointment, and as she’d been studying Lyme again lately, she was excited about what she’d learned. Due to that, she’s had me start doxycycline and I’ve got to get to Costco to get my prescription of Armor thyroid to start as well. I don’t believe I’ve ever taken an antibiotic before (?) so any advice that you may have, I would love to hear them. At the top of the notes she printed out for me, she wrote “Laura, you are doing great! Things will go perfect.” Which is more encouraging than the normal version of ‘we can figure this out’ don’t you think?

a quick selfie while on vacation

*I’ve been on the doxy for a few days, and without knowing if how I’ve been doing is related to that or not… I need to document it. I started it the 15th of april, and took a detox bath that afternoon – and had a terrible reaction to the bath. I was weak and my heart was pounding and as the day continued, my head got worse and the aching increased. And I was SO hungry in the evening. Eesh. The next day I was better but again, crazy hungry in the evening. The morning of the 18th, a terrrible, horrible, no good cramp in my left calf woke me up. I could feel my right calf cramping up as well. It went on forever (I really have no idea in reality…) before it eased.

I plan on looking up the info she was sharing with me and then I’ll pass it along to you!

~Laura

Tags: brain fog, chronic fatigue, chronic migraines, chronic pain, fibromyalgia, health, health update, late stage lyme, lyme disease, memory loss, natural treatment for lyme, sleep, symptoms of lyme disease, tmj, visual auras

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Categories health

Health Update Dec 2018/Jan 2019

23 Jan

I don’t like writing these sometimes – although living the pain is obviously worse. Heh. Over the weeks I’d really slipped into ‘pure survival’ mode. Which for me, means I wasn’t doing any detoxing or anything to help diminish the pain except for my vitamins and clonidine. So, beginning of the new year, I have made it a point to do the extra detoxes and other things to try and get me out of this funk.

fightinglymemigraines

Overall Health: I’ve taken some steps backward this past month and that is incredibly frustrating. Stomach issues and debilitating migraines and fibro flaring again.

Dec 20- drove to bend. Very tired after but did pretty well all day
Dec 21- fatigue and some fibro. Short nap in afternoon, fuzzy brain after
Dec 22- decent fatigue, but went shopping. 2 hr nap in afternoon, helped. Some fibro cramps in feet/ constant left calf cramping. Took 1/2 melatonin at night
Dec 24- didn’t sleep well last night. Achy all over – teeth, joints etc. So tired. Some migraine
Dec 27- drive home from bend. Didn’t crash much at all in evening
-Have been having painful twitches for a few weeks. Right eyelid twitching off and on. Fatigue strong but mostly not overwhelming.
Dec 29- fatigue and some fibropain. Bad foot cramp last evening that took a while to wear off.
Iron breath has returned, even though stomach feels fine. Didn’t take any pills/drops on Jan 1 to see if that helps like it did last time.
Jan 2nd – vision loss and nuclear migraine in evening after feeling well all day. Day 25.
Jan 3- recovery from last night. Fatigue and sore.
Jan 7 – bad fatigue all day with minimal ability to focus. Migraine and fibropain kicked up bad in evening. BAD. E of C?
Jan 8 – tired and achy but better so far. Went grocery shopping in am
Jan 17- IV day. Fatigue
Jan 18. – strong fatigue (probably from yesterday) started feeling strange in afternoon, kinda shaky and like I’d had caffeine or sugar. Stomach worse the later it got
Jan 19- stomach still upset. Not hungry in am

Migraine: Two nuclear migraines in the space of a week along with a few almost- nuclear ones. The daily ones have been responding to a combo of tylenol and aspirin better than clonidine lately (so strange).

Sleep: I’m still getting about 7 hours with 2 or 3 wakings in the night. Most nights I am completely exhausted but have to wait til I can get the pain down to a decent level to go to bed.

Memory/Brain Fog: I’ve been struggling with words a lot lately. Brain fog has been a pretty frequent thing as well.

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Vision: I had two visual auras in the space of one week. Sigh.

TMJ: It pops painfully frequently and aches so that my teeth hurt daily. The front of my neck has started hurting again as well. I really need to get in to my bodywork doctor soon.

Fatigue: sadly, this has increased once again and stayed strong. I have been resistant to naps lately, just having gotten so very tired of sleeping so long during the day. I’m sure this isn’t a good way to handle fatigue… It’s just been weighing me down every single day.

Fibromyalgia: It’s increased a bit since last month. My left calf is still tense/self flexing throughout the day and cramping in my feet/calves. I’m glad that they haven’t started again in my hands/elbows though. Ice is still the current magic treatment – be it on my calves or neck. If I’m resting, I’ve got one on me.

Weight Loss: Oy. I was losing steadily and slowly and now it’s just to the point where I’m hoping I can start working out again so i don’t end up at the weight I was when I first started losing a year ago. Augh.

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Mood: I’m sad to report that this has been touch-and-go the last while. I’ve run out of Xiao Chai Hu Tang and haven’t replaced it. (the price is what’s stopping me but I’m going to have to break down and do it soon.)

Digestion: Not good. I have been struggling with iron breath and sometimes an upset stomach again. Cutting back the amount of pills I take has helped but it hasn’t taken care of the problem. I’m really not sure what’s going on – if it’s something I’m eating or what. But I go in to see my Dr. in a few weeks to talk about it.

~Laura

If you want to check out a post about pain keeping you up at night, The Dark before the Dawn is the one for you. Or check out Chronic Illness Silence to read about feeling like I often have a gag in my mouth about my health. This title says it all – Unexpected Side Effects of Chronic Pain.

Tags: chronic fatigue, chronic illness, chronic migraines, chronic pain, chronic pain management, ebv, fibromyalgia, health, lyme disease, sibo, tmj

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Categories health

Health Update: May/June/July 2018

31 Jul

I am going to admit something to you right away – I’m starting this but have no idea when it’ll get finished and posted! With my OH’s graduation and party on Sunday, my parents coming into town today and donation boxes/a dog park run to do before they get here, I’m just not sure how much of this I’ll actually get written today. But, “Well begun is half done”.

**Update: It’s now July 30th and I am just now getting back to this post! The party has been thrown (along with a second one beginning of this month) the parents have come and gone, along with another couple of guests, many dog park runs have occurred and I’m woefully behind on so much that I’ve intended to do. But, this is step one in getting back on track!

fightinglymemigraines

Overall Health: I have been a bit better this month. Fatigue has still been a major problem. My back seized up early one morning and it took almost two weeks before it stopped hurting. I’ve seen some improvement in my every-few-weeks flaring, which has been such a relief.

May 14 saw bodywork Dr. Worked on whole left side.
May 15 saw main Dr. Going to start neuroflam. Also went major grocery shopping today. Was worn out in afternoon, dehydrated, some brain fog. Took detox bath in evening, wiped me out.
May 16- woke up with severe fatigue. Slept again until noon. Joints achy and a 7 migraine. Fatigue isn’t so severe this afternoon.
May 18- a better day. Was able to do some light cleaning, cooking, etc. Migraine didn’t hit till later afternoon and then harder in evening. First evening in at least a week that my hip hasn’t hurt and my calf hurts half as bad. Fatigue isn’t near as bad but still underlying.
May 20- monthly started. Hungrier than normal. Not much fatigue. Went to the beach for the morning. Severe migraine early afternoon partly from lack of food. Some cramping/tingling in feet, calves and hands
May 23- took Abby to the park, went to get my hair cut and to two stores.. Worn out and a migraine trying to come in evening. Hip didn’t hurt though!
May 24- woke up early with bad migraine and very hungry. Had a snack and slept again. Migraine was still bad when I woke up, but early afternoon it has eased some. Strong fatigue today.
May 25- woke up feeling better enough that I drove to Eugene in the afternoon. Hit with 8 migraine in the evening, and Soo hungry but ice, clonidine and food kept it from increasing. Took a short nap around 8pm.
May 30 – fibropain flaring all week. In hands especially tonight, maybe because I worked in yard this am. Migraine flaring up to an 8 but then stopping. Fatigue hit hard yesterday, easing off today.
–have been ‘seeing’ things in the corner of my eye. A bit of heart pounding. Fingers hurting/have to focus to straighten all the way.
June 3- severe migraine out of the blue in evening. Vision gone in left eye. Debilitating. Day 15.
June 4- recovery day and keeping the pain down.
June 5 – fighting migraine down. Hit hard in evening. To a level 9. IV today, glutathione push.
June 6- pretty good today. Upset stomach in late am and late evening. Clonidine keeping migraine down. Some fibropain.
June 11-fatigue hit hard all day. Migraine tried to flare throughout the day. Took 2 naps. June 13- decent fatigue but was able to get up and putter around the house as well. Took a long nap. detox bath in the evening.

Have been struggling with bad fatigue for a week and a half. One vision loss migraine.
June 26th iron and nutrient IV.
June 29- best I’ve felt in a long while. Energy, mental clarity,
July 1- day 15, fatigue and some mood issues. Needed a nap in the afternoon. Fibropain pretty strong in joints in late evening. But such an improvement from this time last month
July 19- back feeling a little better in am. Took Abby to the park. Afternoon, fatigue hit hard. Fibro flared in evening. Slept on ice pack all night
July 20- back still hurting (a week and a half now) mainly on left side. Possible kidney moved down again?

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* I’ve been on the DIM Detox since the end of May and I have slowly but steadily seen an improvement in my mid-month flaring like we were hoping! I did have to cut back to 1/day after increasing to 2/day and having a flare but it’s helping!!!

Migraine: These have slowly decreased from May to end of July. I haven’t had a ‘nuclear migraine’ (aka, vision loss/debilitating) since beginning of June. They are still daily, of course – finish?

Sleep: This hasn’t changed much other than, with the fatigue, I’m needing more naps. Not every day, thankfully, but a lot of times when I do nap, it’s a few hours before I wake up. Which then makes it hard to get to bed before midnight… I am glad that I still don’t need melatonin to get to sleep like I did for so long!

Memory/Brain Fog: This was a big enough of a struggle that I started taking Neuroflam (thankfully I can get it for about $30 cheaper than this amazon price). To experiment, I have been off of it for a few weeks…and I think it really was helping. OY. I was hoping to save that money but anything that helps with mental clarity is worth it. I’ve been so foggy that sitting down and writing (either on here or on my book) has been such a trial that I just haven’t done it. Sadly.

It took at least half an hour to get the needle in to a good vein this time. Second try with the Iron push. Verdict? Doesn’t kick the fatigue.

Vision: Since the beginning of June, I haven’t had full vision loss but I have had some minor sparkles, spots or blurriness. I have been able to attribute them to exhaustion or hunger. When they have been tied to the oncoming of a severe migraine, I’ve been able to halt it from fully forming.

Fibromyalgia: Ahhh, joint aches. Self-cramping. Sporadic tingling. Pain that is trying to claw its way out of my body. This has increased over the months and I’m thinking that it’s due to the fact that I’ve been having cane sugar occasionally. As well as starch. I am okay with never feeling the need to move just because the pain is so bad.

TMJ: This is one thing that has eased off and stayed down, mostly. My teeth will still ache and my jaw is almost always tender to the touch. It doesn’t pop too often.

Fatigue: This has been a doozy for a while now. My last two IV’s, we’ve gone without the glutathione and done Iron and nutrients but it’s not kicking the fatigue like the glutathione. OY.

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Weight Loss: I was doing good on this for about a month and then…I stopped working out and more lax on what I would eat. I’ve started working out again though so I’m hopeful I can start losing some again!

Mood: Overall, this has been good- even- calm. A few times a month (?) it goes more wacky than it normally would.

Bladder: since May, I haven’t had any other …strange behaviors in this quarter.

I follow Aubrey on Instagram and just had to share this bit of humor.

If you want more frequent updates on my health journey – as well as Abby adventures, crochet projects and whatnot – follow me on Instagram!

*Disclaimer: I will say though, that I tend to share more…. real-life photos there than I do here. I only share a portion of them here on SGL. I have gotten some comments on my ‘death/zombie’ photos and such – if you don’t want to see pictures of someone in chronic, debilitating pain, I suggest you don’t follow me on IG. or Facebook, heh. I know it can be hard to see and read about, but this is my life and the life that so very many people are living. We didn’t ask for this. If you don’t like it, and there’s nothing wrong with that, please don’t make critical comments about our hard days – even if you mean them in jest. They still wound us. I appreciate each one of you that follows my blog, IG or Facebook.

I caught Abby being a goof the other morning, here it is, just to make you smile,

Tags: chronic fatigue, chronic migraines, chronic pain, ebv, fibromyalgia, health, health update, late stage lyme, lyme disease, natural treatment for lyme, symptoms of lyme disease, tmj

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Categories health

24 Jul

I’m sharing this post – a Letter to Lyme Disease – that is especially fitting for me lately. I hope you’ll take the time to click over and read it as it speaks to what those of us with chronic pain go through emotionally as well as physically.

“I’m getting very tired of having to lay on an ice pack all the time. It’s the main thing that has been keeping my migraine down these past weeks. But. It would be nice to not have to be switching them out all the time. I miss the softness of my pillows.”

~Laura

Tags: chronic fatigue, chronic illness, chronic migraines, chronic pain, health, late stage lyme, lyme disease