Tag Archives: lyme disease

From My Desk: Updates, Projects and More!

7 Feb

I don’t really know the last time I did an update post. It’s probably been about ten years, honestly. But as I was trying to decide what to share this week, I thought, well, why not give a bit of a life update?

I’ll dive more into how self publishing my first novel is going; what’s up next in regards to my writing and my amigurumi business; the books I’m looking forward to reading this year and more!

As for Amelia, the first installment in the City of Roses Collection, the official release day is February 21st, 2025! From writing this post, that’s only twenty days away!

I’ve been working with Lieve Maas of Bright Light Graphics throughout this process and she has been so wonderful. She’s a wonderful designer – for the cover and interior – and even offers a one-on-one marketing masterclass.

Amelia will be available on Amazon and Ingram Spark. I’m still working to get on local bookstore shelves.

As for what’s next in my writing, it’ll be the next installment of the City of Roses Collection. As a quick explanation – I’m writing these so you, the reader, can read them in any order you want – or read any as a standalone. They aren’t a series, in other words, although you’ll see the character arcs throughout as some characters will, naturally, be in several books. But each book will focus on different characters but it’s all set in the same world.

Anyhow, I’m working steadily away on writing/editing the next installment and am loving it. I have high hopes of publishing it next year, but we’ll really just have to see how this process goes this coming year, as this is all quite new to me.

To move onto another of my hobbies – crocheting. Did you all know that I’ve got an amigurumi business? It’s called Aunt Lolo’s Amigurumi, and I have pages on Facebook and Instagram. I mostly make whatever strikes my fancy and will admit that I post items for sale rather sporadically. But I do take custom orders, and that’s what I’ve been working on this month. I still need to finish the patterns from a crochet-along that I joined back in October… The items are so absolutely adorable! I plan on putting them up for sale once I’ve completed the whole set, so if any of these catch your eye, keep an eye on either of my pages!

One more note on my book and amigurumi, I crocheted my main character, Amelia!

The books I’m wanting to read this year… Mostly I’ll be focusing on my shelf of books that I’ve either bought or been given that I’ve not read. Just a few examples:

original Star Wars books

10 Days in a Madhouse by Nellie Bly

The Book of Three by Lloyd Alexander

The Cricket in Times Square by George Selden

Pearl in the Sand by Tessa Afshar

Here Burns My Candle by Liz Curtis Higgs

Chaim Potok books

Of Gold and Shadows by Michelle Griep (released 2024)

Prequel: The Adamah Series by Nick Michael (re-read)

The Octonumi by Trevor Alan Foris (re-read)

If you’ve been following SGL for several years, you’ll know that I battled Lyme Disease and migraines for almost two decades. I am healthier than I have been in years but there are still the residual issues that come from having had Lyme as well as still dealing with migraines on occasion. These past months have been a bit of a rollercoaster as I’ve been struggling with health limitations again but all in all, I’m still so much better than I was even five years ago.

Other than that, I’m looking forward to visits from friends for my birthday; starting to dream of flowers and vegetable gardens, working on my classic VW come spring and taking a summer trip with just my hubby.

I hope you enjoyed this little look into what I’ve been up to and what I hope to do!

~Laura

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Health Update- July 2024

31 Jul

It’s been over a year since I posted my last health update, and you can find that here. My overall health then was that I was doing better than I would have dreamed I could be, three years ago. Still dealing with limitations and pain but amazed that I have so few migraines and couch days.

Things have changed a little since then, but I’ll just let you scroll on down and read it for yourself.

Migraine: Since last year’s update I was averaging maybe one migraine a month. Which was incredible. But for May and June of this year, they were about 4 a month. Sigh. Thankfully, this month I’ve only had one. I did have a dose of Emgality near the end of May, but that was about 9 months of being off of it, which is just amazing.

Sleep: This has been a bit tougher the past few months and I don’t really know why.

Memory/Brain Fog: This was doing so much better until the past few months

Vision: For May and June, visual auras were getting to be a common thing again but, I believe taking Emgality again helped contain them again

TMJ: Once again, the past few months this has been more painful.

Fatigue: Less than it’s been in ages, I think. But I do drink coffee now- ha. But really, I do still struggle with this but it’s so much less than it used to be that I try not to let it bother me too much. Maybe once a week or so am I really just exhausted to where I don’t want to/can’t do much. – last year’s answer is just about the same, except for, starting in May it has reared it’s ugly head again and I’m still trying to get it back under control.

Fibromyalgia: As long as I don’t eat very much processed sugar, this is pretty non-existent

Weight Loss: nope

Mood: Ups and downs as everyone has, but nothing too dreary overall

Digestion: Same

Allergies: I can occasionally have a small amount of gluten and eggs (not together, heavens!) without much, if any reaction.

Current Protocol: W. L Energizer, COQ10, CalMAg, Candidastat (when needed), Naltrexone, Biofilm- Phase 2 Advanced. Prescriptions: Thyroid, Diclofenac Potassium (when needed), Naratriptan (when needed) and Emgality (only once this year!)

Overall Health: While I’ve been doing quite well – better than I could’ve hoped, even with the fatigue that still followed me around to a degree. Nowadays though, I feel a bit like I’m slogging through most days and tasks. It’s disheartening but I know that I’m slowly coming out of the crash that I was in.

Thanks for visiting SGL, I hope you’ll return for book reviews, the occasional health update and some exciting news that I’ll be sharing in the next few months!

~Laura

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Health Update- April 2023

29 Apr

Hello again all! Thank you for still sticking around, even though this is only my second post of the year. And really, my posting has been spotty the past few to several years. But, enough of that. I would like to start sharing my health updates again- even if it’s not every month. It would be nice for me -and maybe you?- to see how far I’ve come since I was doing these regularly.

My last health update was Sept 2020- let’s do a quick recap of that, shall we? I was struggling with jaw and joint pain, severe migraines regularly, mood swings and crazy fatigue. Sleep and vision was funky.

I share that here to help get in perspective of where I was – while I was doing better than I had been, I was still pretty much a wreck. And it was a novelty to not have to sleep with an ice pack.

Migraine: typically only one nuclear migraine every three months. One severe migraine a month on average and those are typically less than twenty four hours. They average at 7/10. I am now on Emgality (Aimovig was Great but stopped working for me). It is also a monthly injection so it has few/no side effects. I also have diclofenac potassium when the headaches get too bad and I want to stop them from turning into migraines. When they do reach that next level of pain and I need something to just knock them out, I have naratriptan. This ‘system’ has had such an impact on my health and mental health. Knowing that I have ‘stages’ of medication to halt the progression of pain is such a relief. I am so glad that I finally started seeing a neurologist again.

Sleep: This is helped by taking a few things at night- Naltrexone and Biofilm- Phase 2 Advanced.

Memory/Brain Fog: My memory has improved although there are still so many times when I cannot remember something that I know that I know. I am typically able to find the correct word that I’m wanting, although when I’m tired/stressed/whathaveyou, I can’t come up with them. Brain fog is mostly non-existant these days.

Vision: Aside from my vision just changing as I’m aging, this is just fine.

TMJ: This is only a pain once in a blue moon

Fatigue: Less than it’s been in ages, I think. But I do drink coffee now- ha. But really, I do still struggle with this but it’s so much less than it used to be that I try not to let it bother me too much. Maybe once a week or so am I really just exhausted to where I don’t want to/can’t do much.

Fibromyalgia: I rarely have any issues with this anymore. I’m coming to realize that the only time I do, is when I’ve not been as active. (i.e. I’ve been sick with the flu/cold)

Weight Loss: Baby steps by baby steps, it’s slowly happening- this was my answer in 2020 but it still holds true. I’ve lost almost twenty pounds since 2020, and it’s all been extremely slow.

Mood: Back and forth on this one, taking Xiao Chai Hu Tang really helps on the days/weeks when I’m struggling

Digestion: a bit better than my normal.

Allergies have eased too – I can now have chicken eggs again- limited amount but that I can at all, is so nice. They’re much cheaper than duck eggs! And it makes it easier to bake and eat out/buy bread and things. Also, I can have limited gluten without effect- looking at you, tortillas. AND- and this is a two-edged sword, I can eat processed sugar without issue.

Current Protocol: W. L Energizer , COQ10, CalMAg, Candidastat, Xiao Chai Hu Tang, Naltrexone, Biofilm- Phase 2 Advanced. Prescriptions: Thyroid, Diclofenac Potassium, Naratriptan and Emgality

Overall Health: Doing better than I would have dreamed I could be, three years ago. Still dealing with limitations and pain but amazed that I have so few migraines and couch days.

~Laura

To see my latest posts, check out The Year of the Bear and Calor!

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Health Update – Sept 2020

6 Oct

Hello! Thanks for coming to spend some time at SGL!

This time around, as I didn’t take any notes at all this past month on how I was doing, I decided to go through each symptom and fill them out. I was surprised at how often I wrote something along the lines of ‘this has eased’. Even with that being the case, I’ve still been a veritable wreck, so please don’t think that I’ve made some big strides in healing! If that were the case, I’d be announcing it loud and clear on here, believe me! Sometimes, even if things have calmed down, they are still overwhelming and difficult to deal with on a day to day basis.

Overall Health: Very back and forth – Severe migraines and crashing hard for hours at a time to feeling pretty well.

Migraine: It’s still too early to see any changes due to the Aimovig (monthly migraine shot) as I need to take 3 doses before I’ll hopefully start to see improvements. The Rizatriptan that I’ve started taking when they go nuclear have been good to have. Only once did it not seem to help, otherwise, they knock the pain out without any negative side effects. (I have been taking 1/2 a pill only). In this past month, only one nuclear migraine hit- but that lasted several days. Otherwise, the pain has responded to treatments well – and I’ve been able to go to bed without an ice pack several nights.

Sleep: This has been rough for multiple reasons. I took melatonin a few nights.

Memory/Brain Fog: This has improved a tiny bit more, I think

Vision: The odd not-wanting to focus issue has pretty much disappeared. My eyes aren’t hurting as often as they were, either. (not to say that they aren’t hurting at all anymore, it’s just not as often)

TMJ: Less popping, but still often tense and painful

Fatigue: After my nutrient IV, this eased some. I decided to increase Olivirex from every other day to every day – but it caused such terrible fatigue that I backed off of it again. I’ve actually not taken it at all these past 4-5 days. Noticing a big difference, even while on my cycle.

Fibromyalgia: I can’t believe how much this has eased. I still have slight aches in knees and elbows but it’s mostly ignorable. My left calf is still pretty bad but it’s eased as well.

Weight Loss: Baby steps by baby steps, it’s slowly happening

Mood: Oof da. Oy Vay and Augh. This has been a definite struggle.

Digestion: Back to my normal, and perhaps a little better than that even

Current Protocol

My current protocol:

Biocidin, G.I. Detox, Olivirex, Biofilm Phase-2 Advanced, Low Dose Naltrexone, Xiao Chai Hu Tang, Candidastat, Yin Chao, Molybdenum, Berberine as well as CoQ10

~Laura

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Health Update- April to August 2020

21 Aug

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.

April 9, 2020

-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.

May 7, 2020

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.

May 13, 2020

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.

June 11, 2020

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.

July 23, 2020

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

July 26, 2020

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

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The Tears of My Heart

12 May

This is a post that I wrote in 2016 that I decided needed to be dusted off and shared again.

~~~

I found this in my drafts folder earlier this week and decided that it is ready to be shared. While I now have a diagnosis and somewhat-of-a-plan for a cure, these feelings do so frequently overwhelm me and I once again, have to remind myself of the unfailing love of my Saviour.

tearsofmyheart

I feel the tears fill my eyes. One by one they drop to my cheek, and follow the curve down to my chin. Drip. Drip. Drip. I reach up to wipe them away, but what’s this? My cheek is dry, as are my eyes. As I rub my fingers together I realize the tears are not outside, but in. It is inside that is aching. Longing. Crying. But these tears cannot be wiped away so easily with a delicate handkerchief or manicured nails. These require connection, vulnerability and love. Confession of the heart is of the utmost importance if one wants to heal it. But what do I have to confess?

Anger. Frustration. Hurt. All over seemingly-unanswered prayer. Anger that this pain has inhibited 10 years of my life. Frustration that a cure remains beyond my grasp. Hurt that I cannot go on as those around me – event after event.

But this type of contemplation only brings tears that fall onto my cheek. Tears that will need to be wiped away before they fall from my trembling chin. It would be better, rather, to focus on getting through the pain. Accepting my limitations and counting the many blessings I am surrounded with.  So, while the aching inside me continues, I will work to let Him heal it. For I, on my own, cannot heal such a hurt. Even while the tears threaten to overflow my eyes, I will lift my face to the sun and praise Him who has made me and sustained me and blessed me beyond measure.

“Bless the Lord O my soul, and all that is within me. 

Bless His holy name!

Bless the Lord, O my soul, and forget not all His benefits,

who forgives your iniquity, who heals all your diseases, who redeems your life from the pit,

who crowns you with steadfast love and mercy, who satisfies you with good,

so that your youth is renewed like the eagles wings.”

Psalm 103:1-5

*If you have or are struggling with unanswered prayer I encourage you to keep faith! Continue asking and seeking the Lord. His answer might not be the one you (or I) want but His plan far surpasses any plan we can invent. He is the author of everything, give your pain and struggles to Him daily. He can handle them.

~Laura

 

~~~

If you’re interested in some more posts on pain, check out How much more will Chronic Illness steal from me? ,  Chronic Illness Silence   and Encouragement for living with Chronic Illness

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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.

Screenshot_20200129-133731_Instagram

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 

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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.

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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?

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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!*

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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.

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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!

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. – this reminder is still real guys.

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

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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

B2

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

MG

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

 

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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.

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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

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