Tag Archives: lyme disease

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!

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?

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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,

24 Jul

I’m sharing this post – a Letter to Lyme Disease – that is especially fitting for me lately. I hope you’ll take the time to click over and read it as it speaks to what those of us with chronic pain go through emotionally as well as physically.

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“I’m getting very tired of having to lay on an ice pack all the time. It’s the main thing that has been keeping my migraine down these past weeks. But. It would be nice to not have to be switching them out all the time. I miss the softness of my pillows.”

~Laura

 

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 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.

 

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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.

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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.

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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)

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~Laura

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

Health Update Dec 2017/Jan 2018

18 Jan

And here we go again! This was a very rough four weeks for me in so many ways. I am praying that these next four are easier to get through.

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Overall Health: I don’t feel like there’s been improvement this month, what with taking the DMSA (chelation). But my doctor is going to have me start H2PLX,  to see if  it will help with my chronic fatigue. I did learn that I’ve got Epstein- Barr Virus and my doctor and I have discussed my adrenal fatigue more these past few visits.

Dec 22- felt good today. Some fatigue. Migraine hit in evening. Front of neck hurt too. A bit of mood struggles. Fibropain flaring in yet and hands. Left calf tense all day
Dec 25/26 – fibropain flaring, especially in hands. Migraine that’s hard to get rid of. Mood struggles the 25th. Felt good till early afternoon on 26th. Restless achy pain in evenings. 
-Took dmsa the 26th, to avoid taking it on Christmas day. –
12-27 fatigue. migraine in evening. fibromyalgia flared in afternoon/evening. Hurt to open my hand all the way. Calves cramped most of the night as well. Woke up on the 28th, elbows hurt. Hands swollen. Calves still tight.
12-28 started coq10, 10ml 
12-29 have noticed that crossing my ankles left over right causes spasms/cramps in left foot/calf. 
12-30 pretty good all day till early evening. Severe migraine to a 9. Fibropain flaring. Day 26/27
1-2 started monthly. Felt some better than the day before but major fatigue. In evening, fibromyalgia flared bad. Migraine. Front of neck. Jaw. 
1-3 fatigue. Mental struggles- stressed thinking about errands/leaving the house. 
—have had a hard time getting my brain to focus for writing/editing lately— napping a lot more than normal this past week–

Migraines: These increased again – I had several debilitating nights in a row, where I couldn’t get the pain down. There have been half-days where I only had a level 4.

Sleep:  Most nights, I’m still sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.

Memory/Disassociation:  I had a few mild cases of anxiety. I haven’t noticed any changes in my memory. No disassociation.

Vision: I think I only had vision loss once this past month. I did have the sparkles in my vision a few separate times though.

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“I can feel the emotional effects of so many nights of severe flare ups/crashes. Either tears or anger are imminent”

 

Fibromyalgia: One of my biggest struggles this time around. My left calf is consistently tight/cramping. As long as I don’t do too much with my hands (!!), they have been good overall. But the overall, moving fibropain has been intense.

TMJ:  This is still a pretty constant pain. The left side tends to hover around a 4/10, while the right side stays around a 7 or 8/10. The front of my neck hurts/tight at least a few days a week. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples.

Fatigue: Like I already said, this was (and is) bad. I’ll have days where I feel pretty good, except the fatigue is weighing me down.

Weight Loss: I have only weighed a few times. But I haven’t been strict on my diet as well as not being able to get up and moving much lately. I am really hoping that changes soon.

Mood: This has been all over the place wonky. I am going to increase xiao chai hu tang this week, as it seems to help even this problem out.

Bladder: This has, again, been a struggle this month.  Frequent trips – suddenly urgent trips. ugh.

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snuggle time

 

What I’m currently taking:

Vitamins/Supplements: A, Ashwagandha, B2, B complex, Berberine, Butterbur, Calcium/Magnesium, Chaste Tree Berry, Ceanothus, Coq10,  Complete Mineral Complex, DMSA, D3, E, Feverfew, Fibronol, Horse Chestnut, Iron, Iberogast, Noni Fruit, St. John’s Wort, Xiao Chai Hu Tang. and Soon – H2PLX

tinctures : Pulsatilla, Belladonna

essential oils – peppermint, lavender, frankincense, Doterra blends – Motivate, Peace, and a tension one that I can’t remember the name of

Clonidine – prescription pain pill

~Laura

Health Update Nov/Dec 2017

19 Dec

 

fightinglymemigraines

 

Overall Health: Fibromyalgia flared, causing more tears than normal. I had partial vision loss two times. Fatigue didn’t ease much after the IV. I’ve struggled with keeping an even mood the past few weeks. I have started DMSA (chelation) to get the high levels of lead out of me.

11-15 went to Dr Vogel. Stretched back/hip/neck, worked on jaw too. Started xcht again, 1/day
11-16 started fibronol 1/day
11/19 increased fibronol to 2/day
11-22 nauseous, migraine starting am. Traveling to bend
11-23 bad fatigue and brain fog. Needed nap early afternoon. Fibropain flared. Minor pain for day 15
11-25 bad migraine late am, up to an 8 that wouldn’t go down for a few hours. Fatigue. 
11-27 tired but feel pretty good. Energy. Jaw hurts. Fibropain flared a bit last evening. 
11-28 IV with amino acids. Fatigue. Brain fog. migraine flared in afternoon and evening. Fibropain flared late evening
11-29 fatigue. Nap in early afternoon. Some sparkles in vision. Migraine
12-3 flared in evening. Fibropain especially bad in left calf and ankle. Fluttering pain in feet. Restless pain. Migraine trying to come. Day 25 also, full moon 🌕
–mood a bit funky all week
12-12 severe cramp in right calf early am. Tight and sore all day and the next. 
12-15 anxiety before/during running errands
12-16 traveled in afternoon, movie in evening. half vision loss in left eye for about half an hr. Severe migraine hit, was able to SLEEP it off though. 
12-17 woke up feeling pretty good. Fatigue. Only some brain fog. Exhausted by afternoon. Some mood…issues in evening

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Getting the needle in was – again – painful! ugh.

Migraines:  While I’ve had a few level 10 ones, I’ve also had quite a few days where I didn’t need ANY clonidine (pain pills). SO possibly, some improvement?

Sleep:  Most nights, I’m sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.

Memory/Disassociation:  I had anxiety running errands last week. I haven’t noticed any changes in my memory. No disassociation.

Vision: This happened twice this month, but I don’t get as stressed when it comes on, as I used to. A big part of this is, it doesn’t always mean that I’m going to be ‘dying’, like it used to. As long as I eat, take everything I can for it and lay down somewhere, I can normally avoid the extreme migraine.

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Abby made it on a friends’ instagram! SO adorable. 

Fibromyalgia: This has settled in my elbows and still flares in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. Had a severe cramp in my calf (like I hadn’t had in months) that took a few days to recover from. Both calves are tight/hurt/mini cramping majority of the time. Feet hurt/shooting pains if I don’t get them up soon enough. Frequent achy/restless in the evenings.

TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch. I have started going to my bodywork doctor (once a month) again and am hoping to really start seeing improvement in my jaw!

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This is what exhaustion and pain look like. Don’t be deceived by how someone looks – so much pain can be hid with a smile.

Fatigue: Once again, this was a major problem for me. I’m thinking a big reason for it, was that we did amino acids push at the end of my IV last time, instead of the poly mba (or is it mva?)

Weight Loss: I have lost about a pound for sure. I didn’t weigh from mid October to mid December. But I am going to get more focused on this again – including being strict with my diet and trying to move more (even if that is just getting Abby on some more walks!)

Mood: This had stayed better until the past few weeks. I’m sure it’s connected to the fact that I ran out of Xiao Chai Hu Tang and am now only taking half my normal dose.

Bladder: This has, again, been a struggle this month.  Frequent trips – suddenly urgent trips. ugh.

~Laura

How have you been feeling this month? 

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Chronic Illness Silence

15 Dec

Sometimes I feel that there is a gag stuffed between my teeth, stopping me from talking about the physical trials I go through. I can easily say something generic about having a rough day – but go further than that and the gag gets replaced. The sicker I have gotten, the more I have felt this. I have become, over the past dozen years, self-conscious about how much/often I talk about my health problems.

 

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Photo by Kristina Flour on Unsplash

Do I share too much? Do I sound like I’m whining? Do I ever sound like I’m comparing my pain with theirs? Do I sound like I’m making it up? Do they believe me? Or do they think I’m just seeking attention? Is that why I share so much, because I want attention? 

All self-doubts rise like a tidal wave when I go down this route. I suddenly don’t know who I am anymore – it’s like I get caught in the confusion, lost, apart from myself.

But that – that is actually a good way to describe what living in a chronically sick body feels like. I am lost – apart from myself. And I’m crawling on bloodied hands and knees to get back to me.

But, that’s off point. Why do I let people put this gag in my mouth? THIS is my reality. No, I’m not climbing the corporate ladder (the last time I wanted that I was about 12 years old). No I’m not baking like crazy in my own little bakery with my best friend at my side like we’d planned after culinary school (thanks Lyme for taking that dream away). Neither am I a preschool teacher or a nanny anymore. No, I’m not a mom either, chasing toddlers and running kids to soccer practice. Not a published author of a novel that’s helping bring in money to pay for bills, either.

Instead, I’m struggling to form sentences some days. I’m trying to do anything I can to keep the TMJ, the fibromyalgia, the migraines, the fatigue etc etc, from flaring. I’m taking more pills than my parents do every single day. I’m isolated from anything that can make me flare – over-stimulation, foods, lights, etc. I have to take care of ME to know that I’ve done everything to stop the terrible ravages of the infections that are determined to take over every cell and speck of me.

Saying ‘I’m fine’ is starting to feel like a lie. Even when I’m having good days. I feel like I’m bowing to the peer pressure.

Don’t talk about it. Put your mask on. Everything is all right.

Perhaps it’s too many nights of rough sleep, or the shuffling between doctors’ that has me up in arms about this. But should my doctor’s office really be the main place I can feel free to SHARE?

Yes, I do have some lovely friends and family that I can spill my guts to and they are amazing. But the worries – the doubts in my head – those are on repeat even then.

~Laura

 

 

Health Update Oct/Nov 2017

13 Nov

I’m currently sitting at my parents’ kitchen table, the puppies are running around all excited that it’s finally morning, mom’s making coffee, and the ground has a layer of snow. This is the way to start the day, really. – Well, that was a week ago. How has it taken me a week to get this post up? All well.

fightinglymemigraines

I have to admit that I don’t feel quite ready to write this update. Have I just not been paying attention to how I’ve been feeling? Not taking good notes? Or am I just suppressing it so I don’t remember how many awful days I’ve had? But I want to share some news with you – in case you don’t follow me on Instagram :

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“…good news from my Dr appointment on Monday: “You’re healing, Laura” 
Three words that keep ringing in my ears from my doctor appointment. My Dr said them three times as I told her about some of the progress I’ve made in the last 5 weeks. 
It’s still surreal. 
As she phrased it, I was in a whirlpool going down. Now I’ve stopped, I’m just bobbing now- it’ll still be choppy and rough going but I’m not spiraling anymore. 
It was a good visit! I found out a few things, need to get in for some labs soon and finally admitted a few things (ex: going out of the house can cause anxiety! She said she’d guessed that about me and said we’ll probably have to work through those fears as I heal. ) But gosh and golly, I can’t believe it.
For more details, keep reading! 😄 
I’m not breaking down garlic, or anything fatty; my recent crying bouts just means that I’m no longer so emotionally down all the time that I’m noticing when I am down (did that make sense?); My slow/steady weight loss is a huge sign of healing; sugar definitely irritates my fibro; I’ve been able to work on my novel again! I’m pretty sure there’s more that I’m forgetting but I’m still reveling in those words. 😃💕😄 ”

Overall Health:  I have continued to notice that I am able to keep the house cleaner, work on my blog/novel, have less intense disassociation – well less intense flare ups overall. BUT – I had a level 10/disabling migraine that lasted for hours, my fibromyalgia flared awful (worse than it’s ever been) and sleeping is still a trial.

10-24 upped Iberogast to 7 drops/day. Tingles in left hand (ring and pinky up to elbow) Detox bath.
10-25 fatigue today. Migraine in aft/evening that was hard to keep down. Fibropain kicked up. Calves tight and feet hurt. Forgot to do all 7 drops, only did 6 of Iberogast.                    10-26 level 10 migraine preceded by sparkly vision/loss. Worse pain I’ve had in months
10-31 IV with 6ccs of poly mba. Fatigue and brain fog all day. Did have a small burst of energy early evening.
11-1 drove to Bend! Some disassociation and migraine flared late afternoon
11-2 disassociation and fatigue all day. Fibro flared awful in hands all morning/afternoon.
11-3 upped Iberogast to 8 drops/day                                                                                             

11-9 cycle started early am. traveled home, migraine flared in early evening but one clonidine calmed it down                                                                                 

 11-10 fatigue and achy all day. Took 2 clonidine and detox bath that helped for a few hours. migraine hit about a high 8

~also learned at one of my dr appts that my adrenals are WORN OUT.

*This was the most painful IV yet – with my fibromyalgia flaring in my elbows, she couldn’t get the catheter in. After half a dozen tries on my right arm, we went to my left and finally just put in the needle and put it on slow drip. Also did poly mba at the end – 6 cc’s of it. *

Migraines: Like I said, one level 10 migraine but overall they have stuck to the normal level 7/8 every day. Some days I’ve only needed one clonidine to keep the pain down.

Sleep: This has improved a little. I’m not needing the heating pad or blanket on every night. But the achy fibro makes it really hard to sleep.

Memory/Disassociation: Possible improvement in memory. Definitely some disassociation while on vacation. Sometimes just over-stimulation.

Vision: Once again, this only happened once this month!!

Fibromyalgia: This had settled in my elbows and would flare in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. It did flare so bad in my hands one day that I couldn’t really pick up/carry anything. By the next day it wasn’t as severe but it was so frustrating and painful. Since then, it has flared more than it was but the last few days it’s been lessening. Left calf still self-cramps and shooting pains in my feet are more frequent.

TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch.

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Celebrating feeling well enough to make some delicious snacks while on vacation!

Fatigue: This eased off and on – probably thanks to the IV. It has still been intense – to where walking across the room is exhausting – but not as consistently bad as last month.

Weight Loss: I honestly haven’t weighed since the beginning of the month, so I really don’t know how this has gone.

Mood: This has improved a little bit more. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.

Bladder: This has, once again, been a main struggle this month. Waking about 3 times a night – frequent trips – suddenly urgent trips. ugh.

~Laura

How have you been feeling this month? 

 

 

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