Tag Archives: ebv

Health Update Apr/May 2019

30 May

All I can say is at least I’m getting this up before June starts. My levels, and types, of pain have made getting this post up such a bear. fightinglymemigraines

 

 

Overall Health:  It’s been a roller-coaster ride these past six weeks. That’s really all I can think to say about it. I went from doing pretty well during the days and crashing so-so in the evenings to….rough days and passing out at 8pm because I just can’t stay awake any longer. (only to wake up an hour later and not be able to sleep again til midnight.)

 

Apr 16 started doxycycline                                                                                                              Apr 30- good energy most of the day.  1 mile walk plus housework. Migraine kicked up afternoon,  clonidine calmed.  Started thyroid 9am. Tiny bumps on face in evening, not sure why? 
May 2- decent energy in am,  hit with fatigue around noon.  IV in afternoon.  
May 3- felt pretty well today,  fatigue hit afternoon. Tiny bumps on face again this evening and a tad bit last night. 
May 5- bumps again today, also around collarbone, some itchy. Fatigue early afternoon, napped but then foggy and dehydrated rest of afternoon.  Hungry like crazy in evening,  migraine kicked up a lot.  
Observations: fibropain is less intense.  Migraines are still sharp and increase a lot in evenings.  Clonidine helps,  overall but not always.  Evening hunger is common.  Fatigue is light in am but hits mid afternoon at least.  Needing a nap most days.  Foggy brain after. 
Went off of thyroid on may 11th to see if it was causing the rash on my face. Fatigue hit hard whole of following week, rash still present although not as bad? Fibromyalgia flared the same week.  Started thyroid back up on the 17th.
May 17 – visual  aura and nuclear migraine. 
May 21 Fatigue has eased a little bit since Sunday.  Felt off all day,  fending off another crash this evening

Migraine:  SIGH. The pain has been quite terrible lately, with one full blown visual aura/nuclear migraine this past Friday and three more attempting to blow up.

Sleep:  I’m hitting 6 to 7 hours a night, with at least 2 wakings. Majority of them I need the ice pack on the pillow. Several I’m having night sweats -even with the ice, joy oh joy – and of course, never waken feeling refreshed.

Memory/Brain Fog:  Brain fog has stayed around again. It’s kept my ability to focus on things at a minimum.

 

Vision: I have had four  FIVE visual auras in the past week. That’s about four more than I’ve  been having every few months. I’ve noticed that even in between lately, my eyes aren’t quite right. Looking at black text/white background can be difficult…

TMJ:  I have just realized this has eased. My teeth aren’t hurting as much or often as they used to. It has only popped a few times in the past few weeks. My jaw still regularly hurts but overall, this has definitely improved.

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Fatigue: This is still my biggest current struggle. It can go from just marginally dragging to laying me out and making me fall asleep within half an hour. (this makes for interesting planning of errands…)

Fibromyalgia:  In a way this has decreased slightly. But my left side (top of head down to toes) frequently aches. If I stay away from processed sugar, the fibro stays down –remind me of this next time I’m tempted to cheat and have sugar.

Weight Loss: Non-existent.

Mood: This has been a bit topsy-turvy the last little bit but I’m sure it’s because of the levels of pain I’ve been dealing with. And hormones – hormones out of whack are fun. Eesh.

Digestion:  We’re back to my normal! woohoo!

Like I said in my notes above, I went off the Thyroid for several days to see if the mostly invisible rash that has appeared on my face was connected to it. I’m fairly confident now that it’s not, but the rash is still there (at least it is mostly impossible to see!) and I’m not sure why. I’ve also been trying to tell if the doxycycline has helped any of my symptoms, but really, with how I’ve been feeling, it’s so hard to separate the pain, you know? Even doing this update, it’s still all so foggy to be able to tell. I’ve also only been on the doxy for a month and a half, so I doubt that’s long enough to be able to tell anyway.

I will add about the Thyroid though, that I think the fatigue was going down after I first started it – so I’m hoping that will start happening again soon. I mean, I was taking Abby on a mile walk in the mornings, doing some house cleaning and making yummy dinners. Which, for me, is a pretty full/energy burning day. And now I’m barely getting her to the park, doing maybe 20 min of light cleaning and sort of maybe throwing a semblance of dinner together. Augh. I know this journey of healing is an up and down, switchback type of road but I’m ready to be through this particular rough stretch. Especially since I know that the pain in my left side would disappear if I was able to lose some weight.

~Laura

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Health Update Dec 2018/Jan 2019

23 Jan

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

 

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

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

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

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

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

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

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

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

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

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

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

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

~Laura

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

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How much more will Chronic Illness steal from me?

11 Dec

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

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

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Photo by Luis Galvez on Unsplash

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Laura

 

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Health Update Oct/Nov 2018

21 Nov

Hello friends! Thanks for coming by SGL for today’s update on my health. Just a quick intro for anyone new here – I have been diagnosed with Lyme Disease along with some lovely friends – like Fibromyalgia, Chronic Fatigue, TMJ, Chronic Migraines and a handful of other stuff. The co-infections of Lyme are brutal. Brutal, I tell ya. I think I can accurately say that I’m on the road to health – it’s just a switchback, up and down type of road. If you want to read a bit more – go check out my About Me page. But for now, I’ll dive into the update – hoping that this time next year I’ll be able to see even more improvements in my health.

fightinglymemigraines

 

Overall Health:  Fatigue to the max lately. Fibropain as well. I’m sure that not having an IV for almost two months (!!) has a lot to do with how badly I was flaring in October. Since then, my fatigue and fibro have continued to be intense but it is a bit less – and I’m hoping that getting them regular again will keep chipping away at it.

Oct 15- exhausted, brain fog, nap in afternoon helped but by evening whole body ached and hard to get to sleep. Severe pain. 
Oct 22- awful fibro flare in evening, in all limbs. Took 2 fibronol, 1 St John’s, 2 magnesium, 1 berberine, used tens unit on elbows and rubbed magnesium lotion on elbows and hands. Migraine kicked up but clonidine calmed it. Scale for fibro – 8 
Oct 29 stomach slowly feeling better. Taking minimum vitamins and supplements. Took 2-3 hr nap because fatigue was so intense. Day 17 
Oct 31- seems that when I limit my iberogast as well, that my stomach is some better. Today was the best day in weeks for it, although water still tastes awful and I’ve still got some iron breath. Fatigue has been very present past few days, did get to the grocery store this am before it hit. Fibropain still present in joints but not as severe.
Nov 6- IV finally! Some fatigue in am but feeling decent. Exhausted by mid afternoon/evening. Fibropain present in joints all day
Nov 7- some migraine in am.  Fibropain all day in joints, especially knees. Fatigue hit hard@ 7 pm. Went to bed at 10pm
Nov 8- woke up at 4am till 730, slept again till 93pam. Weary but feel pretty good. minimal attention span.

Migraine:  Some days I’m thinking about how much better this area is and then others I’m struggling to keep the pain down to a survivable level.

Sleep:  This hasn’t changed much at all – still needing an ice pack most every night, and typically change it out at least once. It would be nice if sleep actually helped my fatigue.

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Memory/Brain fog:  I am doing something scary – I’m going to see if taking Turmeric pills has the same result as taking the Neuroflam. I’m hoping it does because as much as I love the Neuroflam, it is at least $60 a bottle. (Turmeric/curcumin is a main ingredient in the Neuroflam) My attention span has been spotty often lately. Augh.

Vision: First – I haven’t had any visual auras! I’m very relieved by this. Thing do get blurrier than they should at times.

TMJ: This has increased in popping and pain. I’m attributing it to the fact that I haven’t been to my bodywork doctor in about three months. It pops painfully most every day and aches so that my teeth hurt daily.

Fatigue:  Such a big struggle still – but since my IV I have been able to struggle through getting things done a little more during the day. Unexpected naps have been happening regularly though. Blink once and it’s an hour later.

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my only pic from my last IV! we did a push on everything which makes it SO much faster!

Fibromyalgia: Such a main point of pain. It’s a constant burning, tingling, throbbing in my limbs, as well as occasional cramping in my feet, calves and hands.  The overall aching has been keeping me up late at night, unable 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’ve continued using the Tens Unit on my legs as well as using Mg lotion.

Weight Loss: YES! Little by little it’s happening

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Mood: This has stayed pretty good lately – although I do feel like some of that might be that I’m just not thinking about anything serious.

Digestion: I almost forgot to add this and it was SUCH a problem for over a month. My digestion was so bad that even water tasted awful. I finally figured out that my stomach was needing a rest from all of the supplements/vitamins that I’ve been taking for so long. I cut it down to five or six a day – instead of the… forty (probably more) a day I was taking. It took only a few days for it to start helping and now I’m slowly adding things back in. It’s nice to not be taking so many pills but I can tell that I definitely need more than what I’m currently on.

To read where I was at last year in this journey- click here – it’s also when my doctor first uttered the most beautiful three words she’s ever said to me.

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~Laura

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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,

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Health Update April/May 2018

8 May

Once again, I am so glad I do these updates! It helps so much in keeping track of where I’ve been – and where I am. While I have been frustrated lately on just how expensive all my treatment is – how come insurance just won’t cover lyme treatments?! – I have to admit that it is all worth it. Out of curiosity, I brought up last year’s update  and the difference is striking. I don’t take melatonin or theanine to sleep anymore – ever! While my fibromyalgia is still painful, I can crochet pretty much as long as I want and it doesn’t get to the point of making me cry/scream. I no longer have disassociation. I am able to keep up with housework better overall. The things that I started taking/increased are all some of my favorites now – St. John’s Wort, Butterbur/Petadolex, iron supplement, etc. I have decreased the ceanothus to once a week though because I react to it so strongly.

 

fightinglymemigraines

Overall Health:  It’s a bit tricky to know how to summarize… The fatigue, fibro and migraines just seemed to hit and not want to ease for several weeks. Going to IV and bodywork didn’t help as much as they normally do. But the last few (?) weeks, I have noticed a bit of an improvement. Often, I see it in individual days rather than an increase over several days…

Mar 22- fatigue and migraine today. Crashing in evening with fibropain and migraine. Two or three clonidine. 
Seem to flare on days 15 and 22
Mar 24 – fuzzy brain and fatigue. Migraine hard to calm down throughout the day. 
April 4th – IV (push, not drip) yesterday. Woke up with a headache. Took 2 clonidine during the day to keep it down from a bad migraine. Felt pretty good otherwise. Had energy and ability to focus. Left calf tensed up quite a bit this evening – migraine flaring
April 5th – severe fatigue today. Migraine off and on. Hard time focusing. Left calf tight and foot tingling late evening. Three clonidine today
April 8th- a little fuzzy brained all weekend. Fatigue too. Some cramping. 
April 9- took one drop clonidine am. Mega fatigue hit late morning. Bad migraine early afternoon and most of rest of day. Started SAT.
April 13- increased SAT to 2/day. Some fatigue and migraine
April 16- bodywork Dr. 
April 17- calves cramping. Some fatigue. Nightmares
April 18- foggy brain and fatigue. Calves still cramping. Increased SAT to 3/day
Have mostly forgotten to take daily liver the past week. Haven’t noticed any difference? Fatigue has eased although it is still present. Brain fog is the same. Was busier this past week odd than have been in a while and have not CRASHED like I thought I would. Sensitive to smells and loud noises.
April 23rd- started Mineral complex again. Migraine off and on all day. Energy even though I’ve been tired and took two naps. Was a productive day.
April 24- was tired but not overwhelming. Took one nap, maybe two. Fibropain flaring in late evening, hip hurting too, going to bed a little early, hoping to sleep it away
April 26- fatigue hit today, even more so in the evening. Was hard to even eat dinner. Taking iron supplement didn’t help, like it normally does. Was also hungrier than normal. Front of neck has hurt a lot the past few days. Increase Mineral Complex to 2/day
April 28 – woke up feeling pretty good, fatigue eased. Front of neck still hurt but eased as day progressed. Took Abby to the park with start of migraine but eased by evening. Went to movie, took 3 clonidine before and during. Didn’t crash like I expected to afterward. 
April 29- woke up feeling even better today, still with some fatigue. No clonidine so far. April 30 – increase Complete Mineral Complex to 3/day.                                                           May 4th – start Molybdenum

Migraines: While I haven’t had any level 10’s (and just a few times of a hint of my vision going), these have been bad. And have often not responded to anything I do to get them down. And then other days, one clonidine is all I need. Very back and forth.

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Sleep: I am able to sleep longer than normal – up to 8 hours some nights! It’s been so nice. But. I have been waking up more often to use the bathroom.

Memory/Brain Fog: this has increased, frustratingly. Quite often, I won’t realize how bad it is until I leave the house.

Vision: Like I mentioned above, I had a few times of vision loss. But it was very minimal – the sparklers in my left eye that is the precursor to it, and then nothing else.

Fibromyalgia: This is just bad enough to be obnoxious but not debilitating. My left calf is always tense/hurting. My joints ache frequently and have had some random stabbing pain in my palms or base of feet.

TMJ: The front of my neck has HURT so much these past weeks. Even going to the bodywork doctor didn’t help it like it normally does. My jaw isn’t popping quite as much but my teeth still ache frequently.

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Fatigue: This has eased….most days, thank goodness. I do think the H2PLX has helped a lot. I tried going off my iron supplement and while I didn’t think at first there was any difference, there was. (it got to the point that I’d fall asleep mid-project…or almost fall asleep in the checkout line at the grocery store.) I now am taking it most every day again.

Weight Loss: I have been able to lose a tiny bit!

Mood: This has calmed back down again and I am so very thankful for that.

Bladder: Ahhhh, this one. This one has me a bit baffled. All of a sudden last week, I was needing to use the bathroom about every 10 minutes. And I’d wake up about 5 times a night. GAH. I don’t know why either. Thankfully it’s calmed down but it’s still more…active than it should be.

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~ Check out It’s the Lyme Life – may 2017 and Encouragement for living with Chronic Illness (the start of a 4- part series) for more!

 

 

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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

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Health Update Dec 2017/Jan 2018

18 Jan

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

fightinglymemigraines

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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snuggle time

 

What I’m currently taking:

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

tinctures : Pulsatilla, Belladonna

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

Clonidine – prescription pain pill

~Laura

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A Musing Maverick

Ilse Davison

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Navigating with Chronic Illness in a Self Absorbed World

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