Tag Archives: symptoms of lyme disease

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.

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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.

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Feeling like half of myself that morning

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

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

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

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

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

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

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

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

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

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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.

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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.

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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.

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~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

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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.

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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?

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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.

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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.

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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.

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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

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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.

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~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

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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.

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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.

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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.

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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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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,

Health Update April/May 2018

8 May

Once again, I am so glad I do these updates! It helps so much in keeping track of where I’ve been – and where I am. While I have been frustrated lately on just how expensive all my treatment is – how come insurance just won’t cover lyme treatments?! – I have to admit that it is all worth it. Out of curiosity, I brought up last year’s update  and the difference is striking. I don’t take melatonin or theanine to sleep anymore – ever! While my fibromyalgia is still painful, I can crochet pretty much as long as I want and it doesn’t get to the point of making me cry/scream. I no longer have disassociation. I am able to keep up with housework better overall. The things that I started taking/increased are all some of my favorites now – St. John’s Wort, Butterbur/Petadolex, iron supplement, etc. I have decreased the ceanothus to once a week though because I react to it so strongly.

 

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Overall Health:  It’s a bit tricky to know how to summarize… The fatigue, fibro and migraines just seemed to hit and not want to ease for several weeks. Going to IV and bodywork didn’t help as much as they normally do. But the last few (?) weeks, I have noticed a bit of an improvement. Often, I see it in individual days rather than an increase over several days…

Mar 22- fatigue and migraine today. Crashing in evening with fibropain and migraine. Two or three clonidine. 
Seem to flare on days 15 and 22
Mar 24 – fuzzy brain and fatigue. Migraine hard to calm down throughout the day. 
April 4th – IV (push, not drip) yesterday. Woke up with a headache. Took 2 clonidine during the day to keep it down from a bad migraine. Felt pretty good otherwise. Had energy and ability to focus. Left calf tensed up quite a bit this evening – migraine flaring
April 5th – severe fatigue today. Migraine off and on. Hard time focusing. Left calf tight and foot tingling late evening. Three clonidine today
April 8th- a little fuzzy brained all weekend. Fatigue too. Some cramping. 
April 9- took one drop clonidine am. Mega fatigue hit late morning. Bad migraine early afternoon and most of rest of day. Started SAT.
April 13- increased SAT to 2/day. Some fatigue and migraine
April 16- bodywork Dr. 
April 17- calves cramping. Some fatigue. Nightmares
April 18- foggy brain and fatigue. Calves still cramping. Increased SAT to 3/day
Have mostly forgotten to take daily liver the past week. Haven’t noticed any difference? Fatigue has eased although it is still present. Brain fog is the same. Was busier this past week odd than have been in a while and have not CRASHED like I thought I would. Sensitive to smells and loud noises.
April 23rd- started Mineral complex again. Migraine off and on all day. Energy even though I’ve been tired and took two naps. Was a productive day.
April 24- was tired but not overwhelming. Took one nap, maybe two. Fibropain flaring in late evening, hip hurting too, going to bed a little early, hoping to sleep it away
April 26- fatigue hit today, even more so in the evening. Was hard to even eat dinner. Taking iron supplement didn’t help, like it normally does. Was also hungrier than normal. Front of neck has hurt a lot the past few days. Increase Mineral Complex to 2/day
April 28 – woke up feeling pretty good, fatigue eased. Front of neck still hurt but eased as day progressed. Took Abby to the park with start of migraine but eased by evening. Went to movie, took 3 clonidine before and during. Didn’t crash like I expected to afterward. 
April 29- woke up feeling even better today, still with some fatigue. No clonidine so far. April 30 – increase Complete Mineral Complex to 3/day.                                                           May 4th – start Molybdenum

Migraines: While I haven’t had any level 10’s (and just a few times of a hint of my vision going), these have been bad. And have often not responded to anything I do to get them down. And then other days, one clonidine is all I need. Very back and forth.

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Sleep: I am able to sleep longer than normal – up to 8 hours some nights! It’s been so nice. But. I have been waking up more often to use the bathroom.

Memory/Brain Fog: this has increased, frustratingly. Quite often, I won’t realize how bad it is until I leave the house.

Vision: Like I mentioned above, I had a few times of vision loss. But it was very minimal – the sparklers in my left eye that is the precursor to it, and then nothing else.

Fibromyalgia: This is just bad enough to be obnoxious but not debilitating. My left calf is always tense/hurting. My joints ache frequently and have had some random stabbing pain in my palms or base of feet.

TMJ: The front of my neck has HURT so much these past weeks. Even going to the bodywork doctor didn’t help it like it normally does. My jaw isn’t popping quite as much but my teeth still ache frequently.

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Fatigue: This has eased….most days, thank goodness. I do think the H2PLX has helped a lot. I tried going off my iron supplement and while I didn’t think at first there was any difference, there was. (it got to the point that I’d fall asleep mid-project…or almost fall asleep in the checkout line at the grocery store.) I now am taking it most every day again.

Weight Loss: I have been able to lose a tiny bit!

Mood: This has calmed back down again and I am so very thankful for that.

Bladder: Ahhhh, this one. This one has me a bit baffled. All of a sudden last week, I was needing to use the bathroom about every 10 minutes. And I’d wake up about 5 times a night. GAH. I don’t know why either. Thankfully it’s calmed down but it’s still more…active than it should be.

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~ Check out It’s the Lyme Life – may 2017 and Encouragement for living with Chronic Illness (the start of a 4- part series) for more!

 

 

Health Update Jan/Feb 2018

21 Feb

If you follow me on Instagram, you know a little bit of what this update is going to say since I shared some of this last week. I’ll admit that I kept putting off writing this post. I’ve found it hard to want to share – which feels a little strange but there’s something scary about saying “I’m feeling some better!” I feel the weight of expectation landing squarely on my shoulders. Expectation that I won’t have any more set backs. Expectation that I’ll soon be back to full health. Expectation…expectation… Perhaps it’s just all in my mind, but they have held me back. So, I’m facing them and finally writing this post because I NEED to. I need to document this. fightinglymemigraines

 

Overall Health: One word: improvement. Do you know how scary that word is to type?  I’m noticing I’m able to do things that I wouldn’t have months ago. Fatigue is still a big struggle. Focusing on one task has been tricky.

 

January 16-23 – all symptoms started easing. Needing naps occasionally- cut back on dosage of dmsa which helped with fatigue a lot. Only mild flaring in evenings now, including the restless fibropain. Still struggles with mood after increasing xcht to 3/day. Started h2plx on the 20th. Am avoiding fruit in the am, since the 20th to see if I have any changes in how I feel. Increased B2 to 2/day on the 23rd.
25th – woke up tired and decent fatigue but wasn’t couch bound. Migraine didn’t kick in till around 130pm. 
1-26 felt good today. Did a bunch of cleaning and took Abby to the park. One? Two? Clonidine. Increased horse chestnut to 2/day till day 28.
1-27 upset stomach all day but felt good despite that, took one clonidine late afternoon. Took Abby to the park. Quick grocery store trip ( used a basket instead of a cart!), Worked on book. 
1-28 feel good but so tired- couldn’t nap so took Abby on a walk.  
1-29 felt good again, took Abby to the park. Migraine in afternoon, mostly kept down with clonidine. Some minor brain fog. Increased h2plx to 2/day
1-30 IV. Cycle started. Fatigue but still feel decent. Took Abby on a walk in am. 
2-7 been feeling pretty well the past week. Been able to do quite a bit. Think I overdid it today though – with a lack of veggies, causing some cramping and my left calf is very tight. Brain fog has been increasing. Not feeling able to handle decisions/lots of stuff going on around me. This is my last week of chelation!! 
2-9 fatigue has followed me all week – thanks in part to the chelation. Hip has been hurting the last two nights. Some minor fibropain in my left hand and left calf. Still avoiding fruit in the am as I’ve noticed that I am not as hungry throughout the day. Have even not been hungry for some meals this past few weeks.
2-15 have been doing well this past week. A bit of migraine and fibromyalgia flare up, but it wasn’t bad. Sleeping better and sometimes longer.  Energy. More mental clarity. Hip has been hurting lately. Jaw pops/hurts a lot

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Migraines: These have decreased – yay! There have been a few days that I haven’t taken any clonidine – and several where I just needed one.

Sleep: This has stayed the same – with maybe some slight improvement? –  where I’m getting 7 hours a night (almost to the minute). I wake up about 2 times a night. I’m not needing as many naps during the day – but often even when I do, I can’t fall asleep.

Memory/Disassociation: I’m starting to think I can take the disassociation aspect off of this list! Memory has improved slightly (?)

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“and then, one day, you see a spark of your old self again.”

Vision: No visual auras at all this month. My eyes have been more blurry than normal when I’m tired lately.

Fibromyalgia: I can’t believe how much this has eased. My left calf still is tense most days. I’ve been able to crochet/ write just about as much as I want. When it does increase, it’s more in my joints – wrists, elbows, knees and ankles.

TMJ: It’s been popping a lot along with my teeth aching the past few weeks. I’ve had to push out my bodywork appointment almost two weeks and I am sure that’s a big part of this.

Fatigue: This eased dramatically once I cut back (and then finished) my chelation dosage. It’s still strong though, to where it is the main symptom I have day to day.

Weight Loss: I’ve lost almost all that I had gained in Nov/Dec. I have been able to get out and walk Abby a lot more these past few weeks.

Mood: Yay for mood consistency again!

Bladder: This has eased a bit I think. It’s at least to the point of my normal (which still isn’t where it needs to be)

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All in all, I can’t quite believe the progress I’ve seen this past month. I’m finding myself saying ‘ I couldn’t have done ________ a few months ago’, quite a bit! I am still, of course, ill – fatigue holds me back daily, mental clarity is still something I lack often, etc. I just read through January 2017‘s update and can’t believe how far I’ve come in a year.

 

~Laura

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