Tag Archives: chronic fatigue

Health Update: May/June/July 2018

31 Jul

I am going to admit something to you right away – I’m starting this but have no idea when it’ll get finished and posted! With my OH’s graduation and party on Sunday, my parents coming into town today and donation boxes/a dog park run to do before they get here, I’m just not sure how much of this I’ll actually get written today. But, “Well begun is half done”.

**Update: It’s now July 30th and I am just now getting back to this post! The party has been thrown (along with a second one beginning of this month) the parents have come and gone, along with another couple of guests, many dog park runs have occurred and I’m woefully behind on so much that I’ve intended to do. But, this is step one in getting back on track!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I follow Aubrey on Instagram and just had to share this bit of humor.

If you want more frequent updates on my health journey – as well as Abby adventures, crochet projects and whatnot – follow me on Instagram!

*Disclaimer: I will say though, that I tend to share more…. real-life photos there than I do here. I only share a portion of them here on SGL. I have gotten some comments on my ‘death/zombie’ photos and such – if you don’t want to see pictures of someone in chronic, debilitating pain, I suggest you don’t follow me on IG. or Facebook, heh. I know it can be hard to see and read about, but this is my life and the life that so very many people are living. We didn’t ask for this. If you don’t like it, and there’s nothing wrong with that, please don’t make critical comments about our hard days – even if you mean them in jest. They still wound us. I appreciate each one of you that follows my blog, IG or Facebook. 

I caught Abby being a goof the other morning, here it is, just to make you smile,

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 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

 

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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.

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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? 

 

 

Health Update Sept/Oct 2017

12 Oct

Whew, finally getting this written! I’m gonna give myself a little plug here before I get started.

If you want more consistent updates on how I’m doing, follow me over on Instagram! I’m on there regularly, sharing how I’m doing with dosage increases, doctor visits and whatever else hits me as I fight to get better! (plus, there’s super cute puppy pictures too)

fightinglymemigraines

Overall Health: While fatigue has been less INTENSE, it is still very present, making it one of my main struggles of the month. Dealing with reaction to Iberogast. Not getting good/enough sleep. Bladder issues.

9-12 IV today. Brain fog but ‘compelled to DO’ today. Drove down to Bend on my own! Days away from cycle
9-14 fatigue day. Migraine kicked up. Bit of brain fog. 
9-15 worse fatigue today. Level 9 migraine in evening. 
9-19 upped Iberogast to 2 drops/day. Felt bad in afternoon and awful in evening. Migraine. Jaw. Achy. Etc. 
9-20 same reaction this aft at yest. But not quite as intense perhaps? 
9-22 putting Iberogast in warm water rather than hot tea. Seeing if this helps my reaction/detox to it. Yesterday’s fatigue was intense. Back hurt in evening
9-27 aft. sparkly vision. Severe migraine and fatigue rest of day
9-28 migraine and fatigue hit in afternoon
10-1 fatigue lingered today, able to get out though. Napped in afternoon. Migraine kept down with 2 clonidine. Upped Iberogast to 4drops/day in evening
10-3 IV today. Added poly mba at the end, along with glutathione. 
10-4 woke up achy and tired but had a burst of energy rest of morning. Migraine kicking in early afternoon. Severe migraine and bad fibromyalgia in evening. Rough night.
10-5 woke up rough and weak. 
10-6 woke up pretty good. Tired but ended up with a lot of energy most of the day, despite brain fog. Migraine and fibropain kicking in mid evening. Can’t seem to stop it. 

10-9 upped Iberogast to 5 drops/day
10-10 fatigue and just feeling overall awful this am. Want to get things done but just can’t…. So tired. Woke up with migraine. After a few hrs was able to get up and DO. migraine flared off and on all day. Only flared a bit in evening.

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Migraines: I have done better keeping track of these on my migraine app. Still a little wonky so I can’t use all of the feedback from it but here are a few. These have been averaging at a level 9. Aura and Prodrome are : headache, muscle stiffness and tingling in head. Triggers seem to be: body aches, interrupted sleep and lack of sleep. Top 3 symptoms are neck pain, fatigue and jaw pain. They typically start in the temples, eyes, jaw and base of skull. Most days I can get the pain down to where I can function – and get things done.

~ an ice pack has been my go-to lately. laying on it, or having it on my forehead helps so much.

 

Sleep: This has been a big struggle for me. Falling and staying asleep is so hard. I always sleep with my heating pad under my neck.

Memory/Disassociation: At times I feel like my memory is getting better but I don’t think it is. (no joke intended there, hehe) I will say that I have’t dealt with disassociation this month. Over-stimulation, yes. Frequently.

Vision: This has only happened once this month. I am so relieved about this!

Fibromyalgia: It has reached drive-me-insane level a few times this month. Augh. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a long time. (this has improved a bit from last month!) Ice, advil and light massaging help. The self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet still happen. But my hands aren’t self-cramping as bad although I do have to stretch my fingers out often because they just HURT.

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~Pain and anxiety go hand in hand.~ The last few days I’ve felt a restlessness to be HEALTHY, to be WHOLE. To be past this struggle. I feel as if parts of me are dying, withering away under all of this stress, physically and emotionally. I’m impatient to move on with my life. But I remind myself that my main goal needs to be to keep my eyes on Him – the One who is my Refuge and Strength. No matter what earthly trial I am in, He alone is my Salvation, my Rock. As long as I keep my eyes on Him and ask that my will ever is aligned with His, I will have lived a good and full life.

TMJ – This has been popping/hurting a lot still and I’m thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.

Fatigue: As I said above, this is one of my main complaints from this month. The deep-seated fatigue that just aches and drags me down. I still am compelled to get up and DO things but sometimes the two opposites are at war with each other. Some mornings I am stuck on the couch but then can get up in the afternoon. I want to make a distinction – before it would be so bad that it was hard for me to stay upright in a chair, and I mean, really hard.  Now though, while it is still difficult, I rarely am struggling to stay in it rather than feeling like a cartoon where the character just melts off the seat into a puddle. So, while the fatigue is still bad, it’s not where it used to be.

Weight Loss: I have come out even this month – losing and then gaining it back. I’m a little bit frustrated but I have been less strict on my diet, so….. (by that I mean that I’ve had starch here and there)

Mood: This has improved…sort of. 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.

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IV time again – Hallelujah! Lovely nutrients with gluithione at the end. We’re also going to try a bit of poly (can’t remember the full name right now) at the end as well to see how I do with it. Was able to have a good talk with the Dr about next possible steps, with some suggestions for tests before the end of the year. Brain fog and fatigue are hitting hard today.

Bladder: This is the other main struggle this month. I can’t get back to how my digestion/bladder were a few months ago. (is it really that long ago?) Even when I was cutting out ALL processed and starch. I am waking up typically 3 times a night to go to the bathroom, even when I don’t really need to.

~I wanted to do a quick update of my progress from this time last year. I’ll try to keep it short. I still struggle with many of these same symptoms as well as have added quite a few. (oh joy). But I have more energy overall. And we’ve figured out more of what’s going on with my body to combat it!

What I’m currently taking:

1 each day of  A, B complex, Calcium, Chaste Tree Berry

2 each day of Ashwagandha, B2, Berberine, Butterbur, D3, E, Feverfew, Fibronol, Magnesium, Xiao Chai Hu Tang, Noni Fruit

3 a day St. John’s Wort

1 drop Ceanothus one day a week. 5 drops a day Iberogast (slowly upping)

on Days 15-28, 1 Horse Chestnut Extract and 2 Chaste Tree Berry

Clonidine – prescription pain pills. Averaging 2 a day

Gelsimium, Pulsatilla, Belladonna, phosphorus and one more… – tincture in water that I take when I need relief

essential oils

~Several of these I need to increase, but I’m focusing solely on the Iberogast right now.

I know this was long this month but I wanted to get it all in!

How have you been this month? Do you have any questions for me about what I’m taking/doing? Ask away!

~Laura

Health Update : July/Aug 2017

15 Aug

It’s interesting to go through the past few health updates each time I write a new one to see how I’ve progressed/regressed. It is so easy to just see the mountain you’re climbing that you forget how far you’ve already climbed! The struggle with this battle is that there’s dips and valleys and straight-up peaks that I’ve got to get through and over. Some days I don’t feel up for the challenge but right now, I’m ready for it. I will one day be healthy enough to have the homestead I dream of. I will.

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Overall Health: I have had some LOW lows and some pretty good highs this past four weeks. But, the lows don’t seem to be lasting quite as long as they used to. I even have gotten out for some fun a few weekends.

Notes: 7-7 teeth are aching. migraine. Fatigue all day. Need to take a bath but it’s just too much. Fibropain is kicking up late in evening
7-8 fibropain is in arms, not severe just.. There. Migraine trying to kick in. Tired but can’t sleep
7-9 fatigue and migraine all day. fibromyalgia flaring bad this evening can’t sleep
7-13 fatigue not quite as intense. Fibropain flared in left hand and in calves. Migraine came in evening. 
7-18 slight pain over heart. Fatigue. Migraine trying to kick up -able to be out and about for @6hrs. Back and feet hurt after
7-19 started liver ‘pill’ trial. Went out for a few hrs, migraine kicking up early afternoon. Fatigue and migraine even after 2hr nap. 
7-21 woke up with bad fatigue and migraine. Had to stay home all day. Took two naps, over an HR each, didn’t help with fatigue. Going to bed with level 8 migraine and exhausted. Some fibropain today too. Days away from monthly
7-23 (yesterday i felt pretty good) migraine, nausea and fatigue today. Took a 2 hr nap. Woke up dehydrated, as usual. Brain foggy. 
7-24 afternoon/evening severe (level 9?) migraine. Fibropain flared but not severe. 
7-26 level 10 migraine. Vision was funny off and on all day. Got sparkles in left eye around 4pm. 
7-27 starting fibronol again
8-1 IV today. Woke up shaky, weak and migraine. Severe migraine in evening
8-2 woke up with migraine. Got it calmed enough to sand chair for half an hour
8-3 upped fibronol to 2a day
8-5 another vision loss migraine. Pain didn’t stay severe as long. Nausea. (had gone to see movie in a theatre)
8-7 started Lightning Pearls. Felt pretty good today, migraine kicked up early aft.

8-12/13 felt good overall. so days 21/22 of cycle. still took a few clonidine each day

8-14 worked out for half an hr. upped lighting pearls to 2 a day.

We added glutathione to the end of my IV this last time. The IV’s help so much in reducing my symptoms that I’m excited to add more helps to them.

Sleep: I ran out of Theanine so I was taking melatonin almost every night to help me get to sleep and boy, oh boy, that’s never a good idea. I finally figured that even with how poorly I sleep on my own, at least I wouldn’t be having the nightmares that regular melatonin brings. Thankfully my new bottle of Theanine arrived the other day

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my ‘you don’t always have to be thankful it’s not worse’ face

Memory/Disassociation : These are both unchanged I believe. Although this past Sunday we were out and about all morning and I did very well.

Vision: Along with getting level 10 migraines more frequently, my vision has been ….funky. When those severe ones hit, I’ll lose the sight in my left eye. Thankfully, we have figured out the treatment to get the pain down quickly (or even avoid the severity altogether) as I used to lose sight for half an hr. And then the pain would swoop in about 20 minutes later and last HOURS. So I’m glad we’ve figured out part of it. But now I’m noticing just… irregularities with my sight sometimes. Trying to read – computer or printed page – can be nauseating and the light/words seem to move.

Dizziness:  This has only been present a few times

Fibromyalgia: While I will feel discomfort/tenseness in my calves and writsts/arms, and occasionally shooting pains, the drive-me-insane levels haven’t come back this month. I am curious if this is the fibronol doing its thing. Ice and advil and heat are still my friends for this

Fatigue: This has been back and forth. It will knock me out flat for days at a time and then be on the back burner. I’ve noticed that sometimes getting up and doing something for a few minutes helps ease it

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I now need this shirt

Weight Loss: I haven’t been as consistently strict on my eating this past four weeks which means I haven’t done as well at losing weight.

Mood: Still no major mood swings but it’s still been a struggle. Getting frustrated easily, or just having negative thoughts a lot would throw me all off balance. It has been better the past several days though

Bladder: This had been marginally better but not anymore.

~In an effort to focus on the things that I can do, here’s a few things that I’m currently thankful for : I’m able to make dinner almost every night. I’m now able to drive myself to my doctor appointments. I’m also able to run errands on my own. My attention span has been a little bit better.

~On the flip side, little irritants : the floaters in my eyes lately are driving me crazy. my hands instinctively curl up/tense, which hurts. If I sleep at all without my night guard, I pay for it. severely.

I feel like we’ve made a few strides forward this month and I’m just praying it continues

How have you been this month? 

~Laura

 

 

 

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