Tag Archives: ebv

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,

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.

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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.

 

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.

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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 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.

fightinglymemigraines

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

Beneath the Raindrops

a journey within a state of grace

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If Christ has set us free, why do we keep on picking up those chains