Tag Archives: symptoms of lyme disease

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?

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!

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.

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

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

 

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

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.

IMG_20190319_091015_800

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.

Screenshot_20190418-085844_Instagram

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?

20190327_140154

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

 

 

Health Update Jan/Feb 2019

8 Mar

Well, it’s a little later than I wanted to get it up, but my health update for January and February is finally here.

fightinglymemigraines

 

 

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.

IMG_20190223_184658_502

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.

Screenshot_20190307-080339_Instagram

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

1 each: Turmeric, Vitex, Andrographis, Berberine, Butterbur, Bearberry

1 Complete Mineral Complex only 3/week

3 H2PLX/day

2 drops/day Iberogast

I am wanting to start next, B2 and Calcium (and so many more after those). I also need to work on increasing the Iberogast.

Screenshot_20190307-080429_Instagram

~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. 

That time I took Excedrin

27 Feb

 

timeitookexcedrin

Photo by Hailey Kean on Unsplash

I sit here with tremors running through me. My feet are freezing, but I’m burning up. A migraine is trying to come back and my stomachs roiling, causing nausea. I just want to sleep but there’s no way to relax enough when my body’s freaking out like this.

the cause?

I ran out of prescription pain pills and had to take excedrin tension headache. Caffeine is not my friend. In this moment, I’m not really sure if the pain relief was worth it.

This is my life – deciding which pain I’d rather deal with.

And let me tell you, I hate that fact.

~~~I wrote this a year ago, and never came back to finish it. Perhaps I just needed to get these words out. But I decided to share them with you today in part to remind myself to never ever take Excedrin again.

And to say that if you ever find yourself up in the middle of the night with pain keeping you awake, I know what you’re going through. And if you want to chat about it, or books, or food, or anything, drop me a line. I’d love to talk with you!

Health Update Nov/Dec 2018

22 Dec

I really had to go back and check when I last shared a health update because it does not feel like it’s been a month already! These weeks have gone by so fast, and because of that, I have not kept very good track of how I’ve been doing. Eesh.

fightinglymemigraines

Overall Health:  Fatigue and Fibro have both eased, even before my nutrient IV last week! In between the awful bouts of pain, I’ve had times of almost excess energy. Strange. And wonderful. I’ve been steadily adding my supplements/vitamins back in. Although I did realize that Resveratrol (2/day) causes upset stomach for me! Less than 24 hrs on it and I was having the same problems that I had a few months ago. I cut back to 1/day and am fine again. So. Shrug.

Nov 28- decent day, took 2 naps, 3hrs total. Fibro still flaring and fatigue pretty strong
Nov 29- started 21day workout challenge. 

Dec 11- IV today
Dec 14- a noticably better day overall. No clonidine till @ 10pm. Only slight fibro until later evening. Very tired all day and a little spacy but best day I’ve had in weeks probably
Dec 16- tired all day, oddly energetic late evening. Two clonidine for migraine. Minimal fibropain until evening, left calf cramped. Mood good.
Dec 17- energetic, a bit tired in am but worked out, cleaned bathrooms and juiced. Left calf still tight. Migraine kicked up in evening, very tired in evening

Screenshot_20181222-080835_Instagram

Migraine: These are still daily – and pretty intense every day, but I feel like they are responding to treatment better lately.

 

Sleep:  I’m still getting just about 7 hours exactly 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. Sometimes my naps ruin going to bed at a halfway decent hour and other nights I’m still falling asleep on the couch at 9pm.

Memory/Brain Fog: After a full month on Turmeric instead of Neuroflam, I think it’s working – at the very least I haven’t noticed a big decrease in my memory. The only thing is that I have had a shorter attention span lately. I’m not sure if that has to do with this or just fatigue?

Vision: There hasn’t been any vision loss this month – huzzah! But I have had semi-frequent blurring.

Screenshot_20181222-080915_Instagram

TMJ: This has stayed the same – I’m attributing it to the fact that I haven’t been to my bodywork doctor in about four months. It pops painfully most every day and aches so that my teeth hurt daily.

Fatigue: Thanks to getting regular IV’s again, while this is still strong, it isn’t quite so…overwhelming. Naps are a necessity almost every day, and often they are unexpected (read: I sit down to work on my book/blog/crochet project and suddenly I’m waking up two hours later)

Fibromyalgia: I’m happy to report that this has eased slightly. I think it’s because of the extra thing we added to my nutrient IV last time. (of course, I cannot remember what it was called, but it was specifically to see if it helped with inflammation in the joints/the awful aching) My left calf is still tense/self flexing throughout the day and I’ve been getting cramps in my feet/calves again. 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: sort of?

Screenshot_20181222-081007_Instagram

Mood: Even though I’m only taking 2 Xiao Chai Hu Tang a day (instead of my previous 4), this has stayed good.

Digestion: This has also been good (well, for me). BUT. As I said at the beginning of this post – I did realize that Resveratrol (2/day) causes upset stomach for me! Less than 24 hrs on it and I was having the same problems that I had a few months ago. I cut back to 1/day and am fine again. So. I’m glad that I realized it quickly.

Screenshot_20181222-080946_Instagram

And that’s it for this month! I’m remaining hopeful that this coming year will be full of further improvements. So much so that even I can’t miss them. Heh. Happy Holidays and I’ll see you again next week with this month’s Book Reviews!

~Laura

P.S. Did you see this post – How Much More Will Chronic Illness Steal From Me? that I wrote on the emotional side of living with chronic illness? This one, Chronic Illness Silence, I wrote this time last year about how hard it is to share about what chronic illness sufferers go through. This one , The Dark Before the Dawn, is a late night conversation on pain.

P.P.S. For a more upbeat tone, go check out Hesitant Fate, just a short story I wrote from a writing prompt.

P.P.P.S. Watch next month for my Top Reads and Top Posts of 2018!

 

Health Update Oct/Nov 2018

21 Nov

Hello friends! Thanks for coming by SGL for today’s update on my health. Just a quick intro for anyone new here – I have been diagnosed with Lyme Disease along with some lovely friends – like Fibromyalgia, Chronic Fatigue, TMJ, Chronic Migraines and a handful of other stuff. The co-infections of Lyme are brutal. Brutal, I tell ya. I think I can accurately say that I’m on the road to health – it’s just a switchback, up and down type of road. If you want to read a bit more – go check out my About Me page. But for now, I’ll dive into the update – hoping that this time next year I’ll be able to see even more improvements in my health.

fightinglymemigraines

 

Overall Health:  Fatigue to the max lately. Fibropain as well. I’m sure that not having an IV for almost two months (!!) has a lot to do with how badly I was flaring in October. Since then, my fatigue and fibro have continued to be intense but it is a bit less – and I’m hoping that getting them regular again will keep chipping away at it.

Oct 15- exhausted, brain fog, nap in afternoon helped but by evening whole body ached and hard to get to sleep. Severe pain. 
Oct 22- awful fibro flare in evening, in all limbs. Took 2 fibronol, 1 St John’s, 2 magnesium, 1 berberine, used tens unit on elbows and rubbed magnesium lotion on elbows and hands. Migraine kicked up but clonidine calmed it. Scale for fibro – 8 
Oct 29 stomach slowly feeling better. Taking minimum vitamins and supplements. Took 2-3 hr nap because fatigue was so intense. Day 17 
Oct 31- seems that when I limit my iberogast as well, that my stomach is some better. Today was the best day in weeks for it, although water still tastes awful and I’ve still got some iron breath. Fatigue has been very present past few days, did get to the grocery store this am before it hit. Fibropain still present in joints but not as severe.
Nov 6- IV finally! Some fatigue in am but feeling decent. Exhausted by mid afternoon/evening. Fibropain present in joints all day
Nov 7- some migraine in am.  Fibropain all day in joints, especially knees. Fatigue hit hard@ 7 pm. Went to bed at 10pm
Nov 8- woke up at 4am till 730, slept again till 93pam. Weary but feel pretty good. minimal attention span.

Migraine:  Some days I’m thinking about how much better this area is and then others I’m struggling to keep the pain down to a survivable level.

Sleep:  This hasn’t changed much at all – still needing an ice pack most every night, and typically change it out at least once. It would be nice if sleep actually helped my fatigue.

Screenshot_20181120-082932_Instagram

Memory/Brain fog:  I am doing something scary – I’m going to see if taking Turmeric pills has the same result as taking the Neuroflam. I’m hoping it does because as much as I love the Neuroflam, it is at least $60 a bottle. (Turmeric/curcumin is a main ingredient in the Neuroflam) My attention span has been spotty often lately. Augh.

Vision: First – I haven’t had any visual auras! I’m very relieved by this. Thing do get blurrier than they should at times.

TMJ: This has increased in popping and pain. I’m attributing it to the fact that I haven’t been to my bodywork doctor in about three months. It pops painfully most every day and aches so that my teeth hurt daily.

Fatigue:  Such a big struggle still – but since my IV I have been able to struggle through getting things done a little more during the day. Unexpected naps have been happening regularly though. Blink once and it’s an hour later.

20181106_111232

my only pic from my last IV! we did a push on everything which makes it SO much faster!

Fibromyalgia: Such a main point of pain. It’s a constant burning, tingling, throbbing in my limbs, as well as occasional cramping in my feet, calves and hands.  The overall aching has been keeping me up late at night, unable 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’ve continued using the Tens Unit on my legs as well as using Mg lotion.

Weight Loss: YES! Little by little it’s happening

Screenshot_20181120-083044_Instagram

Mood: This has stayed pretty good lately – although I do feel like some of that might be that I’m just not thinking about anything serious.

Digestion: I almost forgot to add this and it was SUCH a problem for over a month. My digestion was so bad that even water tasted awful. I finally figured out that my stomach was needing a rest from all of the supplements/vitamins that I’ve been taking for so long. I cut it down to five or six a day – instead of the… forty (probably more) a day I was taking. It took only a few days for it to start helping and now I’m slowly adding things back in. It’s nice to not be taking so many pills but I can tell that I definitely need more than what I’m currently on.

To read where I was at last year in this journey- click here – it’s also when my doctor first uttered the most beautiful three words she’s ever said to me.

20181103_162405

 

~Laura

Health Update Sept/Oct 2018

16 Oct

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!

fightinglymemigraines

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

20181004_215338

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.

Screenshot_20180908-155532_Pinterest

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.

IMG_20181010_141838_703

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.

Screenshot_20180924-214659_Pinterest

Weight Loss: YES! It’s not much but I’m pleased with any.

Mood: Thankfully this has evened out again!

~Laura

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?

Screenshot_20180730-120126_Instagram (1)

* 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.

20180717_134758

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.

IMG_20180728_211738_831

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.

Screenshot_20180724-091128_Instagram

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,

A Musing Maverick

"What good amid these, O me, O life? - Answer: That you are here—that life exists and identity, That the powerful play goes on, and you may contribute a verse." - Walt Whitman

Elaine Howlin - Literary Blogger

Journaling, Reviews, Readathons

See Jayne Run

Navigating with Chronic Illness in a Self Absorbed World

prophetofwar.com

I will walk with you. Will you walk with me?

1WriteWay

I AM therefore I Write. Official site of Marie A Bailey, writer, knitter, and stray cat magnet.