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
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.
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.
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!*
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.
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.
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).
When I go to write these health updates, the very first thing I do is pull out my phone and go to my notes. Where I’ve faithfully – or not- kept a log of how I’ve been feeling. Then I’ll email that log to myself and copy and paste it below my Overall Health section… (the wonders of technology that makes that so simple). Well. When I just searched for it, apparently I didn’t put down one day in my log for this month. Not even one day! So, I’m having to rely completely on my memory for this post. Which should be interesting…
Overall Health: I hesitantly say that I’m doing better than I was at last month’s update. Overwhelming fatigue and visual auras still command much of my attention though.
Migraine: Thankfully, I haven’t had more than one turn into a nuclear migraine but there have been several that have wanted to. Mostly, the pain level gets to an 8. And hovers. There have been several days that I didn’t need a clonidine until later in the afternoon, and others where I was taking one right after getting up (and all through the day) and yet nothing would touch the pain.
Sleep: I’m hitting 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.
Memory/Brain Fog: This has improved a little I think.
Vision: The auras just don’t want to go away this month. Most days I have a vague sense that my vision is off somehow and others, I get the more intense colors/blur/black spots. Thankfully so far this month, I haven’t lost sight in my left eye at all.
TMJ: This is about the same as last month although since I’ve been randomly falling asleep during the day (this means without my night guard), my jaw is tenser and my teeth ache a little more. Other than carrying my night guard around with me, I’m not sure how to help this.
Fatigue: I can’t even tell you how much this has decreased you guys. Partly because it would be hard to describe that change and yet get across how much it is still affecting me -and like I’ve mentioned above, I’m taking almost daily naps. Most of them are right after dinner (picture me dragging myself from table to couch without cleaning up from the meal type of tired).
Fibromyalgia: Even with cheating last week, this hasn’t been near too terrible. I still have my left side (especially my calf) aching/cramping/burning pain fairly regularly but the intensity has eased.
Weight Loss: Minimal
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.
Digestion: We’re staying at my normal! Which, is clearly not what it should be but I’m okay with it for now.
SO. I’d like to state the reason for my improvements for this month.
We took me off the doxycycline. The day before I went in to my doctor, it hit me that I’d been feeling awful for 6 weeks. And I’d been on the doxy for….6 weeks. My body just couldn’t handle it. You know what else has disappeared? The rash all over my face.
I am still taking the NP Thyroid and believe that it’s helping my fatigue.
It’s been a slow battle coming back from being on that antibiotic and I’m thankful that I’m getting back to how I felt before. Of course, it’s frustrating that I fell that far downhill but I’m glad I tried it because now we know.
As of the 24th, I started LDN’s (low dose naltrexone)- we’re targeting my migraines with this. I’ve been told that they are tolerated very well. We’ve started me out at 0.5mg and are going to slowly increase the dose til I reach 4.5mg (which is the standard dosage). I had to really force myself to do this – after such a strong reaction to the antibiotics, I really just wanted to curl up and lick my wounds. But I knew that that wasn’t the right decision. I can’t waste any more time that I could potentially be getting well, just to get over fear. Sometimes, that’s the right choice. But this time, I knew I had to push myself and just try it.
Because I can’t even imagine life without migraines. I’ve been having them since I was…18 or 19. To go through a day, two days, a week! without one… Ahhh, what a thought. And if we can get these to go away/ or just minimize them, we believe that some of my other pains will ease as well.
So here’s to being bold and trying new things in the slow journey to health.
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.
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.
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.
Well, it’s a little later than I wanted to get it up, but my health update for January and February is finally here.
Overall Health: Fatigue and fibromyalgia have been hard this past month odd. Having motivation to get anything more than the bare minimum done has been hard most weeks.
Jan 22- still bad fatigue but went grocery shopping in am. Brain fog in afternoon/evening. Migraine kicked up in late evening but not severe. Some achy fibropain last night and thru today Jan 25 – less fatigue the past few days and have been able to take short naps. Migraine kicks up in evening. Pre-cycle symptoms: fibro flaring in calves, back pain, weird/bad dream Jan 30- tired first thing but had decent energy thru out the day. Some minor fibro cramps in calves and hands. Left hip hurting in afternoon and evening. Decent day overall Jan 31- pretty good today till fatigue hit in afternoon. Nap and clonidine kicked the migraine. Left calf cramping Feb 2- fatigue and migraine upon getting up. Took 2 clonidine in am and took a 2 hr nap. Feb 6 – increased iberogast to 2 drops/day. — bad fatigue most of weekend and Monday (11th) and even worse on Tuesday (12th). Severe migraine on Sunday (10th). Wondering if the iberogast is why the fatigue is so bad? Or am I going low on h2plx? 🤯 Feb 13- fatigue wasn’t as bad today. Did minor housework, blogged, read. Only took one nap. A bit of a struggle to keep migraine down all day. Did 1 drop iberogast in am and evening each. Testing to see if it helps. Left hip and calf started hurting in evening Feb 18- changing times of iberogast seems to be helping fatigue. Even with a busy Friday and Saturday, I was still able to take Abby to the park this morning. Migraine/mood flared afternoon. Calmed by evening. Left calf and Hip hurt in evenings. Took half a melatonin Feb 19- decent in am, a little more myself. Ran to Costco in am. Hit w/ fatigue after but not awful. Migraine flared to 6/7 in afternoon. Ice and tylenol/Bayer helped. Going to bed with ice pack 💤 left calf tight, migraine in temples Feb 25- some less fatigue but still strong. Migraine kept down with Tylenol/aspirin. Took one nap. Upset stomach afternoon and then again after dinner. Bloated stomach. Also had the sweats when stomach was worst. Foggy brain. Feb 27- pain in eyes, felt like auras were coming. Fatigue. took a nap and woke up exhausted. Migraine off and on all day. Did some housework etc today though so, some improvement. No stomach issues!
Migraine: Frequently, Clonidine (my prescription pain killer) doesn’t work and I take 2 Tylenol/1 Bayer instead and that does the trick. Some days, the migraine refuses to ease but others, it chills out readily. Commonly it’s in my left temple, band around the head or base of skull.
Sleep: Surprisingly, I’ve started getting more like 8 hours of sleep a night. (still with a few wakings each night of course). I’m not taking a nap every day, which, while that’s nice, I think most days I should be and just can’t.
Memory/Brain Fog: brain fog has been a definite struggle still. And of course, some words are still escaping me.
Nutrient IV : so this might be an odd category but I want to keep track of what we do, and how I respond to it. We did a drip bag this time with the full spectrum of B vitamins, A bunch of Vitamin C and whatever else she adds to it =) and a push of glutathione at the end. I’d hoped to notice a huge increase in my energy and decrease in symptoms (like I used to) but I didn’t. I noticed a small change in those things at least.
Vision: I didn’t have one major visual aura! I have had the feelings of the beginnings of them but have been able to catch them (ice pack, eyes closed in a dark room, protein snack). However, I have had just…aching in my eyes the past few weeks. Dryness as well.
TMJ: I’ve been having more painful popping the last week odd, but before that it was pretty non-existent. My teeth/jaw do hurt every day, pretty badly sometimes.
Fatigue: Once again, this has been such a killer. I have increased my dosage of H2PLX to 3/day and that has already helped. (I just did this a few days ago). While I don’t like the price of H2PLX, the results can’t be denied. I’m trying to get more iron in my diet and contemplating going back on the liver because I’m just so worn out from this. It’s a crushing exhaustion that just wears you down all day.
Fibromyalgia: Sadly, this hasn’t eased since last month. My left calf is still tense/self flexing throughout the day and my knees/elbows hurt to some degree all day/night. My knees hurt the worst though – some days they get ‘stuck’ and I have to slowly straighten them. Ice is still the current magic treatment.
Weight Loss: I have gained and lost, gained and lost. It’s not been a priority lately but I’m trying to focus on it again. I’m trying to cut out corn, starch and processed sugar.
Digestion: Somehow, this has eased to an extent. I still get an upset stomach a few times a week. I still need to talk to my doctor about it (as I ended up having to cancel my last scheduled appointment). I’m wondering if the Resveratrol was one of the main culprits to it freaking out so badly.
Mood: Overall, this has stabilized, and I haven’t even started taking the Xiao Chai Hu Tang. (one of my favorite herb combos you guys, look into it! Check the source though, the levels of arsenic can be high).
I just decided to share with you the vitamins/supplements that I’m currently taking, since I’ve had to really pare down and start over on these.
2 each : Feverfew, Magnesium, St. John’s Wort, Fibronol
I am wanting to start next, B2 and Calcium (and so many more after those). I also need to work on increasing the Iberogast.
~This has been a hard month, to be completely honest. I feel like I’ve hit a valley and pitched a tent there. With my brain fog, I can’t write. With my knee pain I can’t be up and around as much as I want/need to. With the fatigue, I’m so drained that just getting food and taking care of Abby is all I can do most days. I am trying to focus on the positives – one of those being that the fatigue has eased slightly the past few days – and look ahead to better days.
~Laura
In case you missed it, I wrote about a time recently that I took Excedrin. I used to take it regularly for my migraines (about 10 years ago now) but no longer! It’s just…. well, go check out the post. I also have a series on Encouragement for Living with Chronic Pain.
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.
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.
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.
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.
As a girl, I never used to think about growing older. Oh I did in the sense of ‘what do I want to be when I grow up’ and that sort but I never thought past that. Who does when you’re twelve years old and running around barefoot with your pigtails slapping your shoulders?
But with the passage of time, my looking ahead has changed. As it does for everyone. Dreams shift with the wind-blown sand. Hopes are shattered like glass. Sunrises fill your eyes and heart with fire.
Now, instead of career goals and adventures waiting in the future, I look past the busy years to the slow rocking of a chair on a porch. I picture myself sitting there, a blanket on my lap and a long braid down my shoulder. My eyes are dimmed but I can see well enough to read a favorite novel from time to time.
I think about myself, white-haired and worn out. And wonder. I wonder what will I have done in the intervening years? Will I have struggled against this disease that whole time, being relegated to wishing and hoping but stuck fighting just to stay alive? Or will the miracle that I’ve been praying for, finally happen, and I am able to move forward. Move toward a dream. Or two. Or even three.
(like children. a small homestead. Living in Israel for a year. Having writing be my career.)
I will have lived a full life, whether I am chronically ill for the whole length of it, or if I am able to beat it to a large enough degree that I can DO. Do the things that I dream of doing. Do things that I haven’t even thought of.
But there’s a fear deep inside of me. A fear that I rarely acknowledge. For what’s the use of pulling something out for the light of day that you can’t do anything about? But here I am, dusting it off and showing it to you.
There’s a fear deep inside that even though I am fighting and will continue to fight, Lyme will have stolen so many years from me that it’ll be too little too late…All we have is this one life, we don’t get a do-over. Already it has taken 13 years – my whole adult life – how much more will it steal?
Will the old woman in the rocking chair have been there since she was in her thirties?
Will life continue to pass by in a sort of haze- being a part of it but still very much on the outskirts? I am better able to commiserate with people my grandparents age, than with my own.
Deadlines at work and stress over obnoxious coworkers? I have to go back to almost ten years ago to be able to identify with that.
Trying to navigate parenting a young one? Thanks to my health, we haven’t even been able to try for any kids of our own.
Unable to remember that important thing and not sure which doctor to try next? That I understand and have recent experience with.
Are you trying to gauge which medication/supplement/treatment is helping or not? Yep, right there with you.
And while I can laugh about this reality, shoved deep down inside is that fear that it will never change. And if it never changes, how will I react to that fact? I have survived these past few years by simply not thinking about it – by focusing on the fact that I have made progress in healing. Obviously that’s not a bad thing, focusing on the positive. But I know that this fear that is hidden away is going to rear its ugly head eventually and completely. freeze. me. Like it’s done in the past. I know it will again.
Along with that fear is the realization that even while fighting Lyme, I can still have a full life. I can still chase a few dreams and make wonderful memories. Just like I’ve been doing the past 13 years. I finished Culinary School. Traveled overseas and across country. Fell in love. Married. Moved a few times. Gained new friends and nieces and nephews. Picked up an old hobby. Started and finished writing a novel. Etc, etc, etc.
So I share this fear of mine with you not as someone without hope. But as someone that is trying to acknowledge, and share, the hidden things, the secret things that go on in someone living with chronic illness. Just because there may be healing going on, it doesn’t mean that there isn’t a basket full of fears and worries still waiting to be dealt with.
Well, folks, over a week ago I was thinking about the little improvements that have been happening and realized how nice it was to be able to see them! And then, if you saw my FB or IG posts, you know that last tuesday I crashed and burned harder than I have in months. OY, but isn’t that how it goes? It doesn’t take away (fully) from the improvements but it takes away some of the optimism. I do want to look at where I was at this time last year though to maybe get some of that optimism back…hopefully. So let’s get to it!
Overall Health: Flaring severity has decreased. Brain fog has eased. Fibromyalgia has increased. I’m still exhausted and completely tired of fighting for my health. I’m READY to move on to the next thing in my life to focus on – like becoming a published author maybe?
After a blood test last month, we learned that : my LDL’s are high, my adiponectin is high (dr wrote ‘fat burn’ next to it =) ), Omega-3s are low and that I most likely have SIBO. My doctor has thought that before but with the results of this test, we’ve decided to work on treating it.
I’ve started Resveratrol (2/day), Bearberry (1/day), increased Iberogast to 14 drops/day.
Aug 16. Started DIM Detox, 1/day today only? Feel pretty good, tired. Napped. Worked on book! Low migraine late am. Fibropain shoulders down, minimal in wrists and hands. Aug 17- bodywork appt am. Migraine and fibromyalgia flared pretty badly in evening Aug 20- energy in am, minimal pain until early afternoon. Migraine and fibromyalgia flared pretty bad in evening, as has been usual. Aug 24- fatigue has eased and flaring in the evening has calmed down as well. Still some brain fog, fibromyalgia in joints/just all around aching that’s pretty painful and distracting. increased Iberogast to 14 drops/day last week. Am increasing liver, seeing if it helps with fatigue. THESE above are ALL Sept dates!!! Sept 28- migraine flared in evening with fibro Oct 1- Increased Noni Fruit 3/day Oct 2nd- decent fatigue all day went errand running and to the dog park. Fatigue kicked up late afternoon along with migraine. Fibro flaring later evening, especially in right hand. Day 17 Oct 4- fibro flaring last few days. Migraine kicking up off and on all day. Back pain is pretty constant for a few weeks now. started resveratrol 1/day Oct 5&6 upset stomach all day. Fatigue but still able to get up and do things. Brain fog gone Oct 9 vision loss in am, avoided severe migraine. Slept most of the day, fatigue/recovery from the morning. Awful
Migraine: These have been both marginally better, and much worse. — While I have had a slight decrease in severity some days, I also had a visual aura this past week so I feel like it evens out in the end.
Sleep: my doctor had me start taking 5Htp to help with my sleep (among other things) and it did help – a lot – I was waking less during the night, sleeping longer and feeling a wee bit more rested. The problem was that it was causing nightmares and messing up my stomach a lot. I have since gone off of it because the stomach stuff was just too rough. So, I’m back to seven hours tops of sleep with multiple wakings. With frequently needing an ice pack or heating pad.
Memory/Brain fog: The answer is the same as last month – Neuroflam. It is a lifesaver. Not that I’m clear of either memory problems or brain fog but they aren’t so …debilitating now.
Vision: As I said, I had one vision loss this week, although it didn’t progress fully it was the worst I’ve had since June/July. I was able to halt the full nuclear migraine that follows though.
Getting some editing done
TMJ: While it still isn’t popping too much, I would say this has increased lately because it aches SO OFTEN and my teeth just hurt frequently.
Fatigue: This has either been calm enough that I’ve been able to do minimal things (light cleaning, dog park, slow walks,etc) off and on thru the day or it has just hit me hard that I’ve been stuck on the couch for days on end.
Fibromyalgia: Once again, the biggest pain the past month. Well, along with the fatigue. There’s just a constant burning, tingling, throbbing in my limbs anymore, as well as occasional cramping. The cramping had disappeared for a few weeks but now it’s back occasionally. The overall aching has been keeping me up later at night, unable to relax enough to get to sleep. I’m still on ice at least once each day, but it’s typically a pretty fair bit of swapping out ice packs. I have been using the Tens Unit on my legs this past week and it helps so much! I don’t know why I didn’t think of it before.
Weight Loss: YES! It’s not much but I’m pleased with any.
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.”
the start of a good life 