Tag Archives: fibromyalgia

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 Dec 2018/Jan 2019

23 Jan

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

 

fightinglymemigraines

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

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

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

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

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

screenshot_20190121-152043_instagram

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

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

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

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

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

screenshot_20190121-151905_instagram

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

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

~Laura

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

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!

 

How much more will Chronic Illness steal from me?

11 Dec

As a girl, I never used to think about growing older. Oh I did in the sense of ‘what do I want to be when I grow up’ and that sort but I never thought past that. Who does when you’re twelve years old and running around barefoot with your pigtails slapping your shoulders?

But with the passage of time, my looking ahead has changed. As it does for everyone. Dreams shift with the wind-blown sand. Hopes are shattered like glass. Sunrises fill your eyes and heart with fire.

chrncillnsssteal

 

Photo by Luis Galvez on Unsplash

Now, instead of career goals and adventures waiting in the future, I look past the busy years to the slow rocking of a chair on a porch. I picture myself sitting there, a blanket on my lap and a long braid down my shoulder. My eyes are dimmed but I can see well enough to read a favorite novel from time to time.

I think about myself, white-haired and worn out. And wonder. I wonder what will I have done in the intervening years?  Will I have struggled against this disease that whole time, being relegated to wishing and hoping but stuck fighting just to stay alive? Or will the miracle that I’ve been praying for, finally happen, and I am able to move forward. Move toward a dream. Or two. Or even three.

(like children. a small homestead. Living in Israel for a year. Having writing be my career.)

I will have lived a full life, whether I am chronically ill for the whole length of it, or if I am able to beat it to a large enough degree that I can DO. Do the things that I dream of doing. Do things that I haven’t even thought of.

But there’s a fear deep inside of me. A fear that I rarely acknowledge. For what’s the use of pulling something out for the light of day that you can’t do anything about? But here I am, dusting it off and showing it to you.

There’s a fear deep inside that even though I am fighting and will continue to fight, Lyme will have stolen so many years from me that it’ll be too little too late…All we have is this one life, we don’t get a do-over. Already it has taken 13 years – my whole adult life – how much more will it steal?

Will the old woman in the rocking chair have been there since she was in her thirties?

Will life continue to pass by in a sort of haze-  being a part of it but still very much on the outskirts? I am better able to commiserate with people my grandparents age, than with my own.

Deadlines at work and stress over obnoxious coworkers? I have to go back to almost ten years ago to be able to identify with that.

Trying to navigate parenting a young one? Thanks to my health, we haven’t even been able to try for any kids of our own.

Unable to remember that important thing and not sure which doctor to try next? That I understand and have recent experience with.

Are you trying to gauge which medication/supplement/treatment is helping or not? Yep, right there with you.

And while I can laugh about this reality, shoved deep down inside is that fear that it will never change. And if it never changes, how will I react to that fact? I have survived these past few years by simply not thinking about it – by focusing on the fact that I have made progress in healing. Obviously that’s not a bad thing, focusing on the positive. But I know that this fear that is hidden away is going to rear its ugly head eventually and completely. freeze. me. Like it’s done in the past. I know it will again.

Along with that fear is the realization that even while fighting Lyme,  I can still have a full life. I can still chase a few dreams and make wonderful memories. Just like I’ve been doing the past 13 years. I finished Culinary School. Traveled overseas and across country.  Fell in love. Married. Moved a few times. Gained new friends and nieces and nephews. Picked up an old hobby. Started and finished writing a novel. Etc, etc, etc.

So I share this fear of mine with you not as someone without hope. But as someone that is trying to acknowledge, and share, the hidden things, the secret things that go on in someone living with chronic illness. Just because there may be healing going on, it doesn’t mean that there isn’t a basket full of fears and worries still waiting to be dealt with.

~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,

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.

 

fightinglymemigraines

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.

20180329_124624

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.

IMG_20180409_135219_779

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.

Screenshot_20180324-175953

~ 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 Feb/Mar 2018

22 Mar

With it raining outside, corned beef in the crock pot, roasted veggies in the oven and the ingredients for veggie burgers prepped, I’m feeling accomplished – and worn out – this morning. But I’m finding that if I just rest for about an hour, I’m typically ready to get back up and do some more things. Like make the veggie burgers. And vacuum.  But just learning that I can replenish my energy supply, has made such a difference on my attitude – and in what I can realistically accomplish in one day. Of course, there are many days where I am relegated to the couch. And on those days, I seem to be fine with it – read : my brain is so fuzzy that I don’t care where I am as long as I don’t have to hold myself up. Slow progress is progress. And coming to terms with where I am physically does a whole lot for me mentally.

 

fightinglymemigraines

Overall Health: Still able to see improvement but fatigue and fibromyalgia have been flaring this month. A tad bit of mood struggles.

Feb 20- flaring fibromyalgia. Bad fatigue. Migraine kicked up early afternoon. Upset stomach mid evening for no apparent reason. This has been going on for a week ish, off and on 
Feb 22 woke up with migraine from the night before. Went away by mid morning. Felt decent most of the day. Came back early evening to a sharp 7. Took one clonidine. 
Feb 23- migraine kicked up quickly to an 8- neck and shoulders stiff, teeth aching, early afternoon. Two clonidine. Finally eased. Got really tired after making dinner. Calves very tight in evening. 
Feb 29 – some fatigue, upset stomach because I ate some coconut ice cream last night. IV today. Still feeling pretty decent the past few days, even though cycle is coming. Have been able to get multiple things done each day. 
Mar 2 – fatigue. Achy. Fibropain flaring a bit. If I wiggle my toes, a… Tingly (?) Feeling runs up my left calf. Have been overly hungry this evening. Took 3 clonidine again today. 
Mar 5- . Felt decent all day till after a bath. Migraine hit pretty hard and left arm started hurting bad.
Mar 6- woke up with migraine and arm still hurting. Had to sleep with an ice pack all night in my arm, tender to the touch, very achy. 
Mar 7 – woke up with fatigue and migraine but has eased as the day went on. 
Mar 8 – did better today overall until mid evening. Then crashed- migraine, fibropain, back pain. Took clonidine. Then Advil (for my back) a while later. Then fibronol, magnesium, feverfew. So tired but such pain
Mar 9- crashed pretty bad this evening. Was rough today but not awful. Tonight, fibropain, migraine, jaw is super tight and painful. Augh
Mar 11 – jaw hurt and popped all day. Fatigue was less. Migraine off and on all day. Crashed in evening, left calf is very tight making from my toes to hip ache, teeth are throbbing, migraine pulsing. Make. It. Stop.
Mar 15- saw Dr vogel today finally. Whole left side tense and hurting, right side was pretty upset too. Worked on my right kidney a bit as well. Had migraine and fatigue today, nap only helped a little. Brain fuzzy the past few days, mood a little off. 
Mar 19- 20 a bit brain foggy and fatigue but able to do things. Crashed in the evenings significantly.

IMG_20180227_114153_076

Migraines: While these have increased in severity again I am still having days with minimal/none.

Sleep: This has stayed the same, where I’m getting 7 hours a night (almost to the minute). I wake up about 2 times a night. I’m not needing many naps during the day but have mostly been able to when I need them. I did sleep almost 9 hours last weekend though.

Memory: haven’t noticed any change

Vision: Other than noticing they are blurry when I’m tired – especially tired and not wearing my glasses – my vision has been great

Fibromyalgia: This has flared just 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: My jaw has been popping a lot along with my teeth aching frequently.

IMG_20180306_225736_413

Fatigue: This has flared enough that it’s kept me down on the couch at least half a day several times this month. I have started taking my H2PLX at lunch and dinner to see if it helps with the evening burn-out and I think it is, to a degree. I’m now thinking of increasing to 3 a day.

Weight Loss: GAH. I’ m trying not to be frustrated by this – I have gained. Even though I have been relatively strict on my eating (allowing some starch from time to time and a bit of ‘dairy’ every few days), I didn’t expect that to throw my plan of losing 5 lbs by my birthday so off track.

Mood:  this has been a bit off again, but not terrible

Bladder: the same as last month -> 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)

Screenshot_20180322-104906

 

~Laura

prophetofwar.com

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

1WriteWay

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

Beneath the Raindrops

a journey within a state of grace

Life with Kaysie

Encourage, Motivate, Inspire! Living with Purpose!

Blissful Scribbles

Musings through the journey of writing my first novel