Tag Archives: late stage lyme

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 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 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)

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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 : June 2017

14 Jul

Hello everyone!

I pulled up my migraine app to write the stats down, all the while thinking that I haven’t been keeping very good track lately when this confirmed it : 2 attacks the past month, my average attack duration is —wait for it…… 145 hours and 35 minutes. (coughcough) so I’m gonna skip this entire section of update because it’s all faulty.

fightinglymemigraines

Overall Health: the first three weeks of June were terrible. Straight up terrible. But! I also started getting nutrient IV’s and they seem to help so much. I feel like we are starting to figure some stuff out about this poor body. The last week-odd was so much better – all my symptoms calmed down SO much. Although disassociation is still a problem when I’m out and about.

Notes : 5-26 upped xcht to 2/day . Nauseous. Exhausted. Migraine kicks up then recedes on its own. Feeling a bit snippy and lonely today. Waiting to hear back from Dr about upping ceanothus or starting fibrobol.
5-28 starting fibronol, 1/day. Haven’t heard back from Dr, decided to just do it.
5-30 fibropain has been flaring for the past few days bad. Hard time getting it to ease. Trying the white Willow forte for it instead of Advil.
6-1 appt with Dr v today. Left side feels better now. Also started cycle early this am. Pretty miserable all day. Exhausted.  Migraine kicking my butt. Off of fibronol- was causing unexplained bruising.
6-2 first IV today
6-12 migraine not staying down today. Fibropain is starting to flare in late afternoon. Hard time focusing on anything for more than a few minutes. Really wanting to start the detox, hoping to get to the produce store tomorrow so I can. Migraine flared to a 10 in evening. Debilitating. Awful. Body was a heavy weight that I couldn’t move. Tears. Fell asleep around 8pm and slept off and on till the next am.
6-14 day two of recovery. Able to do dishes this morning but exhausted and achy now
6-16 still can’t get rid of this migraine and fatigue. It’s sticking around an 8. Evenings are still rough but seem to be getting easier as they go on. Nothing seems to ease the migraines much
6-20 2nd IV today:
Potassium
B complex (5, 6 a and 12 as well)
Vit C
Calcium
Magnesium
Saline
Fighting a cold as well. Been better this past week-ish. Fibropain has diminished -except for shoots of pain. Migraines responding to treatment better. Highest an 8. Fatigue still awful

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morning dose

*It wasn’t the fibronol that was causing unexplained bruising. I have since started back up on the fibronol because the bruising is still happening. I also realized that the Ceanothus was causing some serious herxing so I am going to start taking it only one drop a week.

Sleep: Still rotating Theanine and Melatonin in order to fall asleep. Having a hard time with falling – and staying – asleep again. Especially when the fibromyalgia kicks in.

Memory/Disassociation: Like I mentioned above, I’ve noticed that disassociation kicks in when I go out in public. I suppose I could be having it here at home too but just don’t realize it. hmmm. Anyway, memory might be improving a little.

Vision: I’ve started getting ‘floater’s in my vision a bit which my dr says can be a vitamin k issue (I think this is right, it goes along with some other problems I’ve been having)

Dizziness: Thankfully, this has stayed mostly calm – but not completely

Fibromyalgia: This seems to flare for a few weeks and then calm down. Right now I’m in the  it’s-coming-back-soon stage. It definitely reached higher intensities, especially during my level-10 migraines. Advil, heat and ice seem to be the only things that help.

Fatigue: this was consistently bad the first three weeks. It eased the last week odd but has since come back with a vengeance.

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Weight Loss : Since I cut processed sugar out and reduced any starches (beginning of May) I’ve lost a total of 5 lbs. I’m excited about this because it’s been steadily – slowly- dropping and any attempts before to lose weight didn’t work. As long as I stay strict like this, I think the weight will continue to drop. (it’s funny because it’s typically 0.8lbs a week.)

Mood: I’ve been good on this and yet not… The mood swings and major struggles haven’t come back but I’ve struggled with getting frustrated at the downward swing of my heath.

Bladder: I haven’t noticed any changes in this area

 

 

~ I am trying not to worry too much about the fact that I’ve started getting level-10 migraines again. Trying. Because, honestly, it’s freaking me out.

~ It would be wonderful if I could go in regular for acupuncture and bodywork. And I really want to try the infrared sauna as well as the sensory deprivation room (because, I just couldn’t do the ‘tank’ – hello claustrophobia). There are a few other treatments that I’ve looked into that I would like to try but due to money – and insurance not covering anything I need for Lyme treatment – I just can’t. It has been a big point of frustration for me this month.

 

~I am going to start looking into getting disability which completely overwhelms me just thinking about it. If anyone has any tips or suggestions, I’d absolutely love to hear them!

~Laura

I am on Instagram where I update/share how I am doing pretty regular if you want to check it out

 

Health Update – April 2017

28 Apr
 It’s been a very rough month, full of reasons that I have to move, even when I’m working with no spoons. Ugh. As important as I know doctor appointments are, I admit to wishing many times that I could just stay home on my couch.
I wrote a post on pain keeping you up at night a few weeks ago, go check it out! If you want to follow me on instagram –  I do regular updates on how I’m doing and share lots of happy puppy pictures.

Preparing for a trip with Lyme Disease

14 Mar

It occurred to me this morning that getting ready to go on a trip is a lot more stress and worry and work than it used to be.

prpringfortripwithlyme

No longer is it a simple matter of setting the dates, doing laundry, packing the bag and heading out. This is what it looks like now:

~Mentally debate if I’ll feel well enough to go

~Look at calendar to decide timeline of my health vs when I’d be there

~Set dates

~Stress that I’ll feel well enough to get there

~ Plan a few activities while there

~Make a list of what I need to do before I go

~Stress that I’ll feel well enough to do anything once there

~Add things to list to do beforehand (order meds, fill daily pill box, make essential oil roller bottle, etc)

~Get excited about going on the rare morning I feel well

~ Dream about when I didn’t stress before a trip

~ Stress about the fact that I now stress

~Wonder if I’ll sleep well while there

~ Do laundry and wonder why we go through so many clothes – there’s only 2 of us!

~ Check out to-do list that hasn’t changed in the past few days

~ Get excited at the thought of seeing family again! (all those nieces and nephews too!)

~ Tentatively move up date of departure

~Stress about all I need to get done with less time to do it

~Stress that I’ll feel well enough that soon

~Wish it was just the day to go already so I could stop stressing about it

 

Fairly accurate, I’m afraid. If there’s nothing else being chronically ill for over a decade has taught me, it’s how to stress out about stuff. I may be flexible and fine with changing plans but it’s the days leading up to it that are the problem! All this aside, I always have fun on my trips, making it possible for me to want to leave home again. I would like to point out, that this is list is even more true when I am going somewhere I’ve never been before. And then a whole other host off stressors come into play – will the bed be comfortable, will I be able to sneak off to nap if I need to, will there be food I can eat, etc. Thank goodness I’m going to my parent’s house and they are wonderful about helping me out. Plus, my puppies get to go with me. Trips are just more fun with my girls around.

Well, I’m gonna finish doing laundry and hopefully make some breakfast cookies. Here’s to making memories, despite health concerns and mental break-downs =)

~Laura

Health Update – Feb 2017

10 Mar

Happy Friday friends! It’s been a while, I know. Sometimes life just kicks you down a bit and you’ve got to let go of the blogging goals. (plus my parents were in town last weekend to celebrate OH’s birthday, such a fun time!) So, this update is late, but at least it’s happening. Here we go:

fightinglymemigraines

According to my migraine app (Migraine Buddy), my migraines have averaged 30 hours. I’ve had 26 attack days, 5 free days! They’ve happened 80% on weekdays at an average of 7.5 pain intensity. My top three aura/prodromes were weakness, muscle stiffness and fatigue/achiness. Top three triggers were neck pain, interrupted sleep and too much activity. Top three symptoms were jaw pain, neck pain and throbbing pain. They frequently started in the temple, jaw and base of skull.

Overall Health: About the same as the past few months, although I’ve been dealing with the emotional side of it better these past few weeks. Realized at the doctor’s last week that I haven’t gotten rid of any symptoms, have only added more. Rather discouraging.The never-ending search for what will help is exhausting and I’ve been dreaming of being healthy and able to homestead like I want to =)  Plus I got sick earlier this week so not sure if my newest treatment attempt is helping or not.

Treatment: I started taking Ceanothus on the 9th of Feb and it seems to help so far as it gives me a burst of energy (kind of like caffeine) and I’m not as bitterly cold all the time. It seemed to get rid of the nausea as well, and eased the joint pain. By the end of the month, when I went in to my dr, I hadn’t improved much past that so she suggested I try an antibiotic for two weeks. I’ve been on it for one week but have been sick for most of it… so is it helping? We’ll see. If this doesn’t help, I’m not sure what we’ll do. My OH is getting frustrated that we’ve made so very little progress and I have to admit that I’m right there with him.

Migraines: They might have eased since Jan… it’s hard to really remember. They have been hitting hard and frequent. Typically in the evening.

Digestion and TMJ: my digestion has been a bit off again lately. perhaps too much sugar?? TMJ—well, that’s a story in itself. Remember when I said my goal for Feb was to ‘survive dentist appointment’? I survived it but the news was not-so-friendly. I’ve added grinding to my clenching of my teeth over the last four years. And that constant stress spreads a whole host of fun symptoms – explaining at least in part why I’ve gotten worse. I’ve got to reschedule to meet with a craniosacral chiropractor (was supposed to go in this past week but the cold I got prohibited that!) in the hopes that the therapy will help realign my jaw. Thankfully, my teeth themselves are fine and there’s no further need to go to the dentist. Huzzah!

Sleep: I’ve been having to take Theanine to get to sleep again lately. It’s frustrating but I’d rather get at least six hours than lay tossing and turning and be guaranteed  to have a migraine the next day.

Memory/Brain Fog: This has improved the past few months (!!!) While I still struggle to gather my thoughts when I’m in a crowded/noisy room, and anything long term is hard to remember, I’m not kicking myself for forgetting the littlest things like I was doing. Brain fog is pretty rare now, typically only occurring when the pain is severe.

Vision: My eyes are still frequently blurry but it seems to be slightly better than it was. I’m hopeful this continues to clear up!

Feet/leg cramps: Still tense and minor cramping. Very few bad cramps. Mainly in feet lately.

Dizziness: Only if I’m really tired and have had too much salt. Thank goodness this is mostly gone!

Joint Pain: This one has eased as well although the ache is definitely still present. Any lessening is a blessing!

Nausea: This is gone and, as I said above, I think it’s in thanks to the Ceanothus. I’m not for sure but I’m so thankful that it’s gone.

Moodiness: This one has also mostly gone away. I’m pretty sure my OH is as glad as I am about this. hehe.

Fatigue: This is one of my biggest struggles and I’m not sure why it hasn’t been on this list at all yet. Even with the energy burst from the Ceanothus, my fatigue is REAL, people. I’m looking forward to the day when I can look at a flight of stairs and not feel a sense of dread.

It’s so nice to have seen at least a few symptoms ease/disappear but I’m afraid that joy has gotten swallowed by the rest of everything else. Until this past week of sickness, I was getting the dogs to the park about three times a week. I’ve also started trying to get Lady to walk .5 mile while there. She’s older and needs to lose weight and it gives me a reason beyond myself to. get. moving. And that’s always a good thing.

That’s the update for February, although it is late! Have a fabulous weekend and we’ll hope to see you back here next week.

~Laura

p.s. don’t forget to spring your clocks forward on Sunday!!! 

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