Tag Archives: chronic migraines

Chronic Illness Silence

15 Dec

Sometimes I feel that there is a gag stuffed between my teeth, stopping me from talking about the physical trials I go through. I can easily say something generic about having a rough day – but go further than that and the gag gets replaced. The sicker I have gotten, the more I have felt this. I have become, over the past dozen years, self-conscious about how much/often I talk about my health problems.

 

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Photo by Kristina Flour on Unsplash

Do I share too much? Do I sound like I’m whining? Do I ever sound like I’m comparing my pain with theirs? Do I sound like I’m making it up? Do they believe me? Or do they think I’m just seeking attention? Is that why I share so much, because I want attention? 

All self-doubts rise like a tidal wave when I go down this route. I suddenly don’t know who I am anymore – it’s like I get caught in the confusion, lost, apart from myself.

But that – that is actually a good way to describe what living in a chronically sick body feels like. I am lost – apart from myself. And I’m crawling on bloodied hands and knees to get back to me.

But, that’s off point. Why do I let people put this gag in my mouth? THIS is my reality. No, I’m not climbing the corporate ladder (the last time I wanted that I was about 12 years old). No I’m not baking like crazy in my own little bakery with my best friend at my side like we’d planned after culinary school (thanks Lyme for taking that dream away). Neither am I a preschool teacher or a nanny anymore. No, I’m not a mom either, chasing toddlers and running kids to soccer practice. Not a published author of a novel that’s helping bring in money to pay for bills, either.

Instead, I’m struggling to form sentences some days. I’m trying to do anything I can to keep the TMJ, the fibromyalgia, the migraines, the fatigue etc etc, from flaring. I’m taking more pills than my parents do every single day. I’m isolated from anything that can make me flare – over-stimulation, foods, lights, etc. I have to take care of ME to know that I’ve done everything to stop the terrible ravages of the infections that are determined to take over every cell and speck of me.

Saying ‘I’m fine’ is starting to feel like a lie. Even when I’m having good days. I feel like I’m bowing to the peer pressure.

Don’t talk about it. Put your mask on. Everything is all right.

Perhaps it’s too many nights of rough sleep, or the shuffling between doctors’ that has me up in arms about this. But should my doctor’s office really be the main place I can feel free to SHARE?

Yes, I do have some lovely friends and family that I can spill my guts to and they are amazing. But the worries – the doubts in my head – those are on repeat even then.

~Laura

 

 

Health Update Oct/Nov 2017

13 Nov

I’m currently sitting at my parents’ kitchen table, the puppies are running around all excited that it’s finally morning, mom’s making coffee, and the ground has a layer of snow. This is the way to start the day, really. – Well, that was a week ago. How has it taken me a week to get this post up? All well.

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I have to admit that I don’t feel quite ready to write this update. Have I just not been paying attention to how I’ve been feeling? Not taking good notes? Or am I just suppressing it so I don’t remember how many awful days I’ve had? But I want to share some news with you – in case you don’t follow me on Instagram :

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“…good news from my Dr appointment on Monday: “You’re healing, Laura” 
Three words that keep ringing in my ears from my doctor appointment. My Dr said them three times as I told her about some of the progress I’ve made in the last 5 weeks. 
It’s still surreal. 
As she phrased it, I was in a whirlpool going down. Now I’ve stopped, I’m just bobbing now- it’ll still be choppy and rough going but I’m not spiraling anymore. 
It was a good visit! I found out a few things, need to get in for some labs soon and finally admitted a few things (ex: going out of the house can cause anxiety! She said she’d guessed that about me and said we’ll probably have to work through those fears as I heal. ) But gosh and golly, I can’t believe it.
For more details, keep reading! 😄 
I’m not breaking down garlic, or anything fatty; my recent crying bouts just means that I’m no longer so emotionally down all the time that I’m noticing when I am down (did that make sense?); My slow/steady weight loss is a huge sign of healing; sugar definitely irritates my fibro; I’ve been able to work on my novel again! I’m pretty sure there’s more that I’m forgetting but I’m still reveling in those words. 😃💕😄 ”

Overall Health:  I have continued to notice that I am able to keep the house cleaner, work on my blog/novel, have less intense disassociation – well less intense flare ups overall. BUT – I had a level 10/disabling migraine that lasted for hours, my fibromyalgia flared awful (worse than it’s ever been) and sleeping is still a trial.

10-24 upped Iberogast to 7 drops/day. Tingles in left hand (ring and pinky up to elbow) Detox bath.
10-25 fatigue today. Migraine in aft/evening that was hard to keep down. Fibropain kicked up. Calves tight and feet hurt. Forgot to do all 7 drops, only did 6 of Iberogast.                    10-26 level 10 migraine preceded by sparkly vision/loss. Worse pain I’ve had in months
10-31 IV with 6ccs of poly mba. Fatigue and brain fog all day. Did have a small burst of energy early evening.
11-1 drove to Bend! Some disassociation and migraine flared late afternoon
11-2 disassociation and fatigue all day. Fibro flared awful in hands all morning/afternoon.
11-3 upped Iberogast to 8 drops/day                                                                                             

11-9 cycle started early am. traveled home, migraine flared in early evening but one clonidine calmed it down                                                                                 

 11-10 fatigue and achy all day. Took 2 clonidine and detox bath that helped for a few hours. migraine hit about a high 8

~also learned at one of my dr appts that my adrenals are WORN OUT.

*This was the most painful IV yet – with my fibromyalgia flaring in my elbows, she couldn’t get the catheter in. After half a dozen tries on my right arm, we went to my left and finally just put in the needle and put it on slow drip. Also did poly mba at the end – 6 cc’s of it. *

Migraines: Like I said, one level 10 migraine but overall they have stuck to the normal level 7/8 every day. Some days I’ve only needed one clonidine to keep the pain down.

Sleep: This has improved a little. I’m not needing the heating pad or blanket on every night. But the achy fibro makes it really hard to sleep.

Memory/Disassociation: Possible improvement in memory. Definitely some disassociation while on vacation. Sometimes just over-stimulation.

Vision: Once again, this only happened once this month!!

Fibromyalgia: This had settled in my elbows and would flare in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. It did flare so bad in my hands one day that I couldn’t really pick up/carry anything. By the next day it wasn’t as severe but it was so frustrating and painful. Since then, it has flared more than it was but the last few days it’s been lessening. Left calf still self-cramps and shooting pains in my feet are more frequent.

TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch.

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Celebrating feeling well enough to make some delicious snacks while on vacation!

Fatigue: This eased off and on – probably thanks to the IV. It has still been intense – to where walking across the room is exhausting – but not as consistently bad as last month.

Weight Loss: I honestly haven’t weighed since the beginning of the month, so I really don’t know how this has gone.

Mood: This has improved a little bit more. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.

Bladder: This has, once again, been a main struggle this month. Waking about 3 times a night – frequent trips – suddenly urgent trips. ugh.

~Laura

How have you been feeling this month? 

 

 

Health Update Sept/Oct 2017

12 Oct

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

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

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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 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).

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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. 

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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.

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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.

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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.

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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!

Health Update : July/Aug 2017

15 Aug

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

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

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

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

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

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

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

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

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

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

Dizziness:  This has only been present a few times

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

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

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I now need this shirt

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

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

Bladder: This had been marginally better but not anymore.

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

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

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

How have you been this month? 

~Laura

 

 

 

Encouragement for living with Chronic Pain Part 4

10 Aug

Hello friends! I hope you’re having a wonderful day. I’ve been sharing a series of posts filled with articles on living with – and being a supporter and encourager  of someone with – chronic pain.

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Facebook posts we all want to share but don’t  by themighty.com

 

Why is Pacing Important? by My Eds Journey

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How Chronic Illness makes you awesome by Chronic Mom

Coping Skills to Manage the Emotional Stress by Life in Slow Motion

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Facing Suffering that lasts longer than a Season by Life in Slow Motion

Symptoms of my Lyme Disease by SGL

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~Laura

Do you have any encouraging posts to share? 

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.

IMG_20170518_220556_995

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

 

Encouragement for living with Chronic Illness (part 2)

29 Jun

Here’s the second installment in this series where I share articles and posts on Lyme disease and chronic pain.

chrncpnsrs2

The Guilt and Shame of Chronic Illness from A Delightful Home

To Those who find my Illness hard to Understand from The Mighty

painstairs

 

5 Things I wish you knew about Lyme Disease from the Mighty

painfear

 

Don’t Say it Could be Worse from Kate the (Almost) Great

8 Tips in Understanding Lyme Disease Patients from It’s Not Just Lyme

painteaches

Thanks for stopping by, and remember to follow my Chronic Pain Pinterest board too!

Laura 

Do you have any links to share about chronic pain? I’d love to read them! 

Encouragement for living with Chronic Illness

16 Jun

Hello friends! I’m going to share with you some posts on dealing with chronic pain over the next little while – I’ve got quite a few saved so I’m going to split them up and we’ll see how many posts we end up with.

chrnicpainseries1

How to talk about your chronic illness from Kate the (Almost) Great

Loving someone with chronic pain  from Kate the (Almost) Great

Financial Tips and Resources for Lyme Disease Patients from Caravan Sonnet

Lyme Madness  from lymedisease.org

The Herx Reaction from Tired of Lyme

I feel like this post shows the chaotic state that chronic pain puts you in – puts your mind in. I was going to organize the posts by ‘topic’ but then just looked through them and they are all over the place. All well. The goal was to share them and hopefully encourage and enlighten those of you suffering, and those of you suffering along-side.

~Laura

Do you have a favorite post to share? Or something that has helped you in your chronic illness journey?

Health Update for May 2017

26 May

Happy end-of-May dear readers! I’m typing this out on my back porch with Lady laying just inside the open door and Abby running back and forth between me and the bone in the yard and OH in the living room. It’s a good evening so far.

fightinglymemigraines

 

Migraine app notes: I had 10 attack days lasting average of 68 hours. I had 2 attack free days. I took 56 clonidine ( 4 more than last month) They happened 50% of the time from 12 pm to 6 pm. Average pain is 7.5, which is pretty good. Supposedly I’m sleeping around 8 hours a night, migraine or not. ha. If only. Top 3 aura/prodrome are muscle stiffness, fatigue/achiness and weakness. Top 3 triggers are neck pain, too much activity and lack of sleep.Top 3 symptoms are neck pain, jaw pain and aches. Frequent start positions are the same, temples, jaw, eyes, base of skull. Soaking my feet has helped a lot this month

Overall Health/Treatment: Up until this past weekend the neurological pain (aka Fibromyalgia) and all was terrible and I was pretty much on the couch. I had some bursts of energy  but not until recently  did it ease enough that I felt like getting up and doing something. I struggled with anxiety/guilt a lot as well. Focused on adding in/increasing supplements to support this poor body.  The evenings are the worst, no matter what I try. I’ve been going to bed in a lot of fibro pain and migraine, just praying I’ll be able to sleep.

notes: 4-28-Migraine was worse today. Aches eased until evening- went to dog park and made dinner then they increased in my calves bad. Barely able to keep migraine down today. Nice to have some energy and the brain fog lifted but the pain’s wearing me down. Have had some muscle twitches today

4-30- today has left me bone- weary. Even the movement of my tongue hurts my jaw. The all-over aches have eased a little, but the cramps are little shivers that regularly run through the base of my feet. Bad migraine today. Wasn’t aware of what was going on around me for a while. Nap helped but body is SCREWED up. Tomorrow is going to be a day of loving on it. 

What do you find hard to tell people about your health? 

 

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