Tag Archives: migraines

The Tears of My Heart

12 May

This is a post that I wrote in 2016 that I decided needed to be dusted off and shared again.

~~~

I found this in my drafts folder earlier this week and decided that it is ready to be shared. While I now have a diagnosis and somewhat-of-a-plan for a cure, these feelings do so frequently overwhelm me and I once again, have to remind myself of the unfailing love of my Saviour.

tearsofmyheart

I feel the tears fill my eyes. One by one they drop to my cheek, and follow the curve down to my chin. Drip. Drip. Drip. I reach up to wipe them away, but what’s this? My cheek is dry, as are my eyes. As I rub my fingers together I realize the tears are not outside, but in. It is inside that is aching. Longing. Crying. But these tears cannot be wiped away so easily with a delicate handkerchief or manicured nails. These require connection, vulnerability and love. Confession of the heart is of the utmost importance if one wants to heal it. But what do I have to confess?

Anger. Frustration. Hurt. All over seemingly-unanswered prayer. Anger that this pain has inhibited 10 years of my life. Frustration that a cure remains beyond my grasp. Hurt that I cannot go on as those around me – event after event.

But this type of contemplation only brings tears that fall onto my cheek. Tears that will need to be wiped away before they fall from my trembling chin. It would be better, rather, to focus on getting through the pain. Accepting my limitations and counting the many blessings I am surrounded with.  So, while the aching inside me continues, I will work to let Him heal it. For I, on my own, cannot heal such a hurt. Even while the tears threaten to overflow my eyes, I will lift my face to the sun and praise Him who has made me and sustained me and blessed me beyond measure.

“Bless the Lord O my soul, and all that is within me. 

Bless His holy name!

Bless the Lord, O my soul, and forget not all His benefits,

who forgives your iniquity, who heals all your diseases, who redeems your life from the pit,

who crowns you with steadfast love and mercy, who satisfies you with good,

so that your youth is renewed like the eagles wings.”

Psalm 103:1-5

*If you have or are struggling with unanswered prayer I encourage you to keep faith! Continue asking and seeking the Lord. His answer might not be the one you (or I) want but His plan far surpasses any plan we can invent. He is the author of everything, give your pain and struggles to Him daily. He can handle them.

~Laura

 

~~~

If you’re interested in some more posts on pain, check out How much more will Chronic Illness steal from me? ,  Chronic Illness Silence   and Encouragement for living with Chronic Illness

Tags: , , , , , , , , , ,

Health Update January 2020

30 Jan

Hello again friends, thanks for coming back to SGL. It has been several months since I’ve done a health update and I honestly debated about continuing them. But, as I decided the beginning of last year, I need this monthly posts to help me keep an idea of just how I’ve been. It’s so very easy to get lost in the day to day haze of pain and brain fog that I can’t recollect the better days – or the worse ones.

The other thing I wanted to do was to change up the format for them but I couldn’t figure out a way to do that, that would still provide the information that I need (and that I want to share). If you have any suggestions, or a blog to recommend that does regular health updates, I am definitely open to hearing them.

fightinglymemigraines

As a look at Overall Health, it’s harder to peg this one down since it’s been so many months. I have had good stretches alongside ones that I barely dragged through each day. I do feel like I’m in the middle of a better stretch – this would mean that my fatigue isn’t so overwhelming, migraines are calmer/respond to treatment, brain fog tends to be a little less, etc. And let me tell you, I’m so thankful for this pause in extreme pain.

Let’s move on to the rest of the update, shall we?

Here are the notes that I kept on my phone:

Nov 30 – exhausted and headachy all day.  Took 2 short naps.  Cycle due any day. Hungrier than normal past few days. 
Dec 2 -mega fatigue all day.  Took 2 naps.  Migraine kicked up bad , hard to get the pain to ease.  Tylenol, Bayer, ice pack and a nap finally did.
11th – woke up with fatigue and migraine, pretty severe till @2pm. Felt better but still both present all day. A bit moody in evening
12th – woke up pretty good, pain hit @2pm, finally eased @4. Left calf and foot hurting and painful cramps. Poor circulation in legs recently . A bit moody in evening again.
14- woke up exhausted.  Fatigue staying all day so far.  Some head pain as well
Dec 29- very busy day in bend.  drove home in evening.  No major migraine/fatigue/crash whole time we were there. Did really well
Dec 30 – woke up very tired but ok. Took nap early afternoon.  Ran errand. Felt really good early evening.  Aches and migraine kicked up in evening. Soaked feet and took tylenol,  eased it. 
Dec 31 cycle started.  Felt pretty well all day,  tired but not terribly.
JAN 1ST- cycle aches all day.  Lazy day with minimal activity.  Joint pain increased in evening.  Went to bed with ice pack on knees.  It’s been weeks since I needed that

Jan 14 – introduced bananas back into my diet. Felt good in am, very tired by noon. Pretty short attention span all day. About an hr nap after lunch.  Exhausted and achy pain suddenly in evening.  Was able to calm it down decently with ice and tylenol.

Sept 12, 2019
Sept 24, 2019

Migraine: the severity has decreased most of the time. Sometimes, I get sideswiped by a particularly nasty one however. I’m still taking 4.5 mg of the Low Dose Naltrexone every night and I believe these have helped a lot.

Sleep:  I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I do frequently take involuntary naps however.

Memory/Brain Fog:  This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift. Sometimes I won’t notice how bad it is until I leave the house/try holding a conversation with someone

Sept 26, 2019
Oct 18, 2019

Vision: I have had several scintillating scotomas, and do occasionally have times where my eyes just don’t want to focus.

TMJ:  My jaw doesn’t pop very often at all anymore and mostly, this pain has diminished. It’s never gone completely, but many days it’s not so severe that I am distracted by it.

Fatigue:  I am able to push myself more than I have in years, probably. But, of course, I do have days where I just am relegated to the couch because I am so fatigued. Or that I just need to space out what I plan, to give my body the rest it needs. – this hasn’t changed much from my last update back in August

Oct 24, 2019
Nov 10, 2019

Fibromyalgia:  This is a persistent, constant pain. Especially in my knee, elbow, ankle joints. Frequently it rears in my hip as well. I have noticed the random twitches that I get have been increasing over the months.

Weight Loss: Not at all. It’s been more of a weight gain issue. Very frustrating.

Mood: This has been very back and forth lately.

Digestion:   This has been good for me – which means, still not where it should ideally be, but for me, it’s okay.

Screenshot_20200129-133731_Instagram

Dec 14, 2019

Earlier this month, I did some blood tests and am waiting to talk with my doctor about the results. I am, of course, hoping that they will reveal just what is going on inside me and will give us a path on which to base the new protocol that I’m going to start.

Over the month of December, I cut out ALL sugars – even natural – in the hopes that it would ease some of the inflammation in my body. But it didn’t seem to do anything, so I’ve been able to add bananas and honey back in. I’ve been adding them back in very slowly, trying to keep track of how I react. I am looking forward to adding strawberries back into my diet soon!

Jan 7, 2020
Jan 13, 2020
I hope the pictures (that I grabbed from my Instagram account) give you maybe a better idea of the ups and downs these past months. Due to a lot of negative comments, I’ve really cut back on the ‘pain’ photos that I feel tend to capture the level of pain that I’m in, so it makes it a bit harder to really get the point across. Because of that, I’ve noticed that I don’t share quite as much on IG as I used to. But since it’s still the biggest part of my life – this fighting for my health – I’m going to try and share more of both the dark days and the better days. I’d like to also increase how much I talk about chronic illness here on SGL. If there’s any topic you’d be interested in reading about, please ask!
If you’ve made it all the way to the end of this post, THANKS! I appreciate you giving me some of your precious time,
Blessings,
Laura 

Tags: , , , , , , , , , , , ,

The Darkness in my Vision

9 Jul

On the edges of my vision there’s a shimmer.

A flash of color.

A vagueness.

A hint of the darkness to come.

I’ve learned that if I keep my eyes forward, it is somehow light enough to ignore. But if I look around, it roars out at me as a lion upon its prey. The strength of its presence causes my whole body to react. My head starts a low pounding, my stomach clenches and my knees feel weak. If left at it’s height, it will take over every part of me, leaving me writhing in pain and fear.

drknsssinmyvsion

Photo by Sebastian Muller on Unsplash

So I take the easy path. I fix my eyes straight ahead and breathe deeply. I push it back down. And try not to imagine the colors – the rainbow of them arching out from the center that is a blinding white. I try not to think of the blurriness that makes everything around that color, ‘other’. Something other than what it is. Something that no longer makes sense, as if it’s from another time or place. Something that leaves it’s edges behind with every blink of my eyes.

As my breathing deepens and the shimmer lessens, I forget about the urgency of doing more to avoid it returning and blithely go about my day.  The lion has been tamed and the prey has been rescued.

For the moment, at least.

Once again, another head turn, a glance too fast for my eyes to adjust and there it is again. But this time, the shimmer is brighter. Bigger. And somehow, darker. The colors have turned deeper shades of themselves, the blinding white has taken on a ferocious tint. As my head pounds again and my joints turn to mush, I remember with clarity that this has happened already today.  My hands will shake if I let them, from the fear that is dogging me now, but I harden my will and do what I have to do to avoid the nightmare that just might come anyway.

The darkness is like the lion in the show – the audience blissfully believes it to be tamed and so will draw nearer it than they should. But the trainer knows that it’s only biding its time until it can strike when the trainer has turned his back and let down his guard.

The darkness is coming.

~This is a description of the visual auras that I’ve been getting off and on the past 14 years. The nightmare that comes after this, is a complete loss of vision in my left eye for about half an hour and then such a vicious migriane (I’ve taken to calling them nuclear migraines) that I’m left crying, laying with an ice pack on my face and if I do have to move, I end up crying even more. These are the ones that make me wonder if I will live through it; they make me wonder if there will ever even be an end to the pain. So there’s good reason to avoid these as much as possible. Of course, sometimes, no matter what you do, they come anyway. 

~Laura

Tags: , , , , , , , , ,

Health Update June 2019

28 Jun

When I go to write these health updates, the very first thing I do is pull out my phone and go to my notes. Where I’ve faithfully – or not- kept a log of how I’ve been feeling. Then I’ll email that log to myself and copy and paste it below my Overall Health section… (the wonders of technology that makes that so simple). Well. When I just searched for it, apparently I didn’t put down one day in my log for this month. Not even one day! So, I’m having to rely completely on my memory for this post. Which should be interesting…

fightinglymemigraines

 

Overall Health: I hesitantly say that I’m doing better than I was at last month’s update. Overwhelming fatigue and visual auras still command much of my attention though.

Migraine:  Thankfully, I haven’t had  more than one turn into a nuclear migraine but there have been several that have wanted to. Mostly, the pain level gets to an 8. And hovers. There have been several days that I didn’t need a clonidine until later in the afternoon, and others where I was taking one right after getting up (and all through the day) and yet nothing would touch the pain.

Sleep:  I’m hitting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow.  But there was about a week where I barely needed the ice pack.

Screenshot_20190627-144236_Instagram

Memory/Brain Fog:  This has improved a little I think.

Vision: The auras just don’t want to go away this month. Most days I have a vague sense that my vision is off somehow and others, I get the more intense colors/blur/black spots. Thankfully so far this month, I haven’t lost sight in my left eye at all.

TMJ:  This is about the same as last month although since I’ve been randomly falling asleep during the day (this means without my night guard), my jaw is tenser and my teeth ache a little more. Other than carrying my night guard around with me, I’m not sure how to help this.

Screenshot_20190627-144226_Instagram

Fatigue: I can’t even tell you how much this has decreased you guys. Partly because it would be hard to describe that change and yet get across how much it is still affecting me -and like I’ve mentioned above, I’m taking almost daily naps. Most of them are right after dinner (picture me dragging myself from table to couch without cleaning up from the meal type of tired).

Fibromyalgia:  Even with cheating last week, this hasn’t been near too terrible. I still have my left side (especially my calf) aching/cramping/burning pain fairly regularly but the intensity has eased.

Weight Loss: Minimal

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it.

Digestion:  We’re staying at my normal! Which, is clearly not what it should be but I’m okay with it for now.

Screenshot_20190627-144250_Instagram

SO. I’d like to state the reason for my improvements for this month.

We took me off the doxycycline. The day before I went in to my doctor, it hit me that I’d been feeling awful for 6 weeks. And I’d been on the doxy for….6 weeks. My body just couldn’t handle it. You know what else has disappeared? The rash all over my face.

I am still taking the NP Thyroid and believe that it’s helping my fatigue.

It’s been a slow battle coming back from being on that antibiotic and I’m thankful that I’m getting back to how I felt before. Of course, it’s frustrating that I fell that far downhill but I’m glad I tried it because now we know. 

As of the 24th, I started LDN’s (low dose naltrexone)- we’re targeting my migraines with this. I’ve been told that they are tolerated very well. We’ve started me out at 0.5mg and are going to slowly increase the dose til I reach 4.5mg (which is the standard dosage). I had to really force myself to do this – after such a strong reaction to the antibiotics, I really just wanted to curl up and lick my wounds. But I knew that that wasn’t the right decision. I can’t waste any more time that I could potentially be getting well, just to get over fear. Sometimes, that’s the right choice. But this time, I knew I had to push myself and just try it.

Because I can’t even imagine life without migraines. I’ve been having them since I was…18 or 19. To go through a day, two days, a week! without one… Ahhh, what a thought. And if we can get these to go away/ or just minimize them, we believe that some of my other pains will ease as well.

So here’s to being bold and trying new things in the slow journey to health.

~Laura

 

 

Tags: , , , , , , , , , , , ,

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.

chrncillnsssteal

 

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

 

Tags: , , , , , , , , , , ,

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.

20180329_124624

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.

IMG_20180409_135219_779

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.

Screenshot_20180324-175953

~ 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!

 

 

Tags: , , , , , , , , , , , , ,

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.

Screenshot_20171011-114246

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.

IMG_20170930_163241_034

~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.

IMG_20171003_120848_903

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

Tags: , , , , , , , , , , , , , , , , , ,

Health Update Aug/Sept 2017

12 Sep

I can’t believe it’s really time to do another health update but this is the first one in a long while that I’m excited to share! I’ve seen baby steps of forward movement in this long healing journey of mine. I will probably end up steps back again in the weeks to come but for now I’m relishing the mini victories. One of them being that I have been just well enough that I’m planning on making the 3 hr drive to visit family and meet my newest nephew! This is HUGE for me, and although there’s a decent level of anxiety about actually being able to do it – I cannot wait any longer to meet little Joseph. ( This little guy makes 18 (!!) nieces and nephews).

fightinglymemigraines

 

Overall Health: I feel like I’ve had extremes this month. I’m either feeling really well or really awful. I am able to see some improvement, though vision loss is a regular thing now.

Dr. Thoughts: She is thinking that I might have SIBO (small intestine bacteria overgrowth) so I am currently taking berberine and iberogast for it. She knows of a new test that is being developed for Lyme that I might be able to have done for free as part of the… what’s it called? Research? (hello Lyme brain right in the middle of a post…) Which would be so great to try and get even more answers.

8-16 started bacteriaphage, awful nausea. 
8-17 woke up with level 8 migraine. Didn’t go down much all day. Fatigue. Not as much nausea from phage
8-18 feel pretty good today. Getting stuff done around the house even. 
8-21 some nausea this am. A little tired but doing good! Yesterday was last day of bacteriophage. 
8-22 IV today. Tired but did good til evening, as usual. Migraine flared. 
8-23 fatigue in am, then mild nausea as well in the afternoon. Ears sensitive. 
8-24 upped lightning pearls to 3/day
8-26 last few days, fibropain has started flaring. 
8-27 slight spasms of fibropain. Pinky and ring fingers been tingly last few days. started berberine. 
8-30 past few days, teeth have been hurting. Jaw worse than normal. Today fibropain in elbows and wrists. Pinky and ring finger on left hand have been tingling all day. Most likely from sanding the other day. Fatigue and achy stronger than it’s been. 
8-31 vision blurry and sparkly early afternoon. Slept 2hrs. Migraine flared to a 9 in evening. Weak. Achy. Migraine down to an 8 now. Day 14.
9-2 feels like another vision loss day coming… 
9-4 started iberogast. 9 drops/day. 
9-5 rough day. Fought off losing vision but migraine high and body weak.                                 9- 9 dropped iberogast down to 1 drop/day, reacting too strongly to it. mild tingling and cramping in same places as on the 30th. 

IMG_20170815_163901_985

Migraines:  There has been some improvement. Mostly during the day. I’m able to -at the least- keep the level down, more easily these days. They still flare up intensely in the evenings. As well as if I’m around anything LOUD or overly BRIGHT (making it difficult to sit through service or a movie, or spend much time in any sort of store…)

~I am doing better keeping track of my migraine on the app on my phone, but not good enough to be able to use the information from it. I miss having that info, so I’m really trying to remember to take the time to do it.

Sleep: I’m still cycling Theanine and Melatonin most nights but even with them, I’m waking up several times and only asleep for just about 7 hours.

Memory/Disassociation: I am seeing sporadic improvement in getting over-stimulated, and not disassociating quite as often although it’s still frequent. I find that I am more and more reluctant to leave my house because of it. I’m not sure if there’s been any change in my memory. Oy.

Vision: I now partially lose – or almost lose- the vision in my left eye about twice a week. Often I am able to keep the following level 10 migraine to a short one, or avoid it altogether. While I’m thankful for that, it’s still very frustrating to have this vision issue so frequent. The feeling that comes with it is awful and the fear/anxiety is terrible.

IMG_20170801_114916_797

Nutrient IV and a great read – Jane Eyre

Dizziness: I almost feel like I could take this one off the list for now. I don’t get dizzy very often anymore

Fibromyalgia: For a second month in a row, the drive-me-insane level of pain hasn’t come. But it’s been just under that several times — where i’m bouncing my leg or such because it hurts too bad to be completely still but it hurts too bad to get off the couch and actually move. Oof da. 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 few minutes or longer. Ice, advil and light massaging help. My hands still curl up and feel as if my fingers are tensing on the inside – as well as the self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet.

TMJ – This has been popping/hurting more frequently again and I’m really 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: I’ve noticed something interesting this past month – Most mornings I am almost…compelled to get up and DO. Clean. Take the dogs to the park. Prep dinner. etc. I just have to be UP and doing something. Even when I know I need to stop and relax, its like I can’t… and I’m not sure why. I haven’t had a lot of awful fatigue, it’s been mostly a level 6 on a scale of 1 -10.

Weight loss: I have been a little bit stricter this month on what I eat, which means I’ve lost about 2 lbs this month. I’m pleased with that because it’s really hard for me to lose weight.

20170902_134924

I fit into these slacks for the first time in months!

Mood: I don’t feel that this has changed much. I still get frustrated easily, and have more negative thoughts than normal.

20170815_154634

Bladder: I just realized that I haven’t mentioned the fact that I tried a new 5-day treatment specifically for the Ecoli strain in my gut – it was bacteriophage. (I mentioned this in my Instagram). For that week-ish, my digestion was better, as well as any bm’s. (i’m trying not to be too tmi here, but digestion issues are common in those dealing with Lyme). Since then, it’s been a bit more touch-and-go, which is frustrating.

Next month I think I’ll do an update of everything I’m taking, as well as compare to where I  was this time last year. (It’s been just over a year since I got a diagnosis). But for now, I’ll close with a question:

Are you seeing any forward movement in your dreams? (be they health, career, hobby, etc related)? 

~Laura

Also, Abby Pond turned two at the beginning of the month and (thanks to google photos) I made this video!

Tags: , , , , , ,

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.

fightinglymemigraines

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

IMG_20170710_133540_206

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

Screenshot_20170813-154153

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

 

 

 

Tags: , , , , , , , , ,

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.

Tags: , , , , , , , , , , , , ,

← Older Entries

Little Blossoms for Jesus

• Enjoying the old-fashioned & beautiful • • Thankful for grace • Growing in faith • • Learning life • Loving people •

A Musing Maverick

Ilse Davison

Elaine Howlin

lost in the pages of books

See Jayne Run

Navigating with Chronic Illness in a Self Absorbed World

prophet of war