Tag Archives: fibromyalgia

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!

 

 

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.

 

fightinglymemigraines

Overall Health: Still able to see improvement but fatigue and fibromyalgia have been flaring this month. A tad bit of mood struggles.

Feb 20- flaring fibromyalgia. Bad fatigue. Migraine kicked up early afternoon. Upset stomach mid evening for no apparent reason. This has been going on for a week ish, off and on 
Feb 22 woke up with migraine from the night before. Went away by mid morning. Felt decent most of the day. Came back early evening to a sharp 7. Took one clonidine. 
Feb 23- migraine kicked up quickly to an 8- neck and shoulders stiff, teeth aching, early afternoon. Two clonidine. Finally eased. Got really tired after making dinner. Calves very tight in evening. 
Feb 29 – some fatigue, upset stomach because I ate some coconut ice cream last night. IV today. Still feeling pretty decent the past few days, even though cycle is coming. Have been able to get multiple things done each day. 
Mar 2 – fatigue. Achy. Fibropain flaring a bit. If I wiggle my toes, a… Tingly (?) Feeling runs up my left calf. Have been overly hungry this evening. Took 3 clonidine again today. 
Mar 5- . Felt decent all day till after a bath. Migraine hit pretty hard and left arm started hurting bad.
Mar 6- woke up with migraine and arm still hurting. Had to sleep with an ice pack all night in my arm, tender to the touch, very achy. 
Mar 7 – woke up with fatigue and migraine but has eased as the day went on. 
Mar 8 – did better today overall until mid evening. Then crashed- migraine, fibropain, back pain. Took clonidine. Then Advil (for my back) a while later. Then fibronol, magnesium, feverfew. So tired but such pain
Mar 9- crashed pretty bad this evening. Was rough today but not awful. Tonight, fibropain, migraine, jaw is super tight and painful. Augh
Mar 11 – jaw hurt and popped all day. Fatigue was less. Migraine off and on all day. Crashed in evening, left calf is very tight making from my toes to hip ache, teeth are throbbing, migraine pulsing. Make. It. Stop.
Mar 15- saw Dr vogel today finally. Whole left side tense and hurting, right side was pretty upset too. Worked on my right kidney a bit as well. Had migraine and fatigue today, nap only helped a little. Brain fuzzy the past few days, mood a little off. 
Mar 19- 20 a bit brain foggy and fatigue but able to do things. Crashed in the evenings significantly.

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Migraines: While these have increased in severity again I am still having days with minimal/none.

Sleep: This has stayed the same, where I’m getting 7 hours a night (almost to the minute). I wake up about 2 times a night. I’m not needing many naps during the day but have mostly been able to when I need them. I did sleep almost 9 hours last weekend though.

Memory: haven’t noticed any change

Vision: Other than noticing they are blurry when I’m tired – especially tired and not wearing my glasses – my vision has been great

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

TMJ: My jaw has been popping a lot along with my teeth aching frequently.

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Fatigue: This has flared enough that it’s kept me down on the couch at least half a day several times this month. I have started taking my H2PLX at lunch and dinner to see if it helps with the evening burn-out and I think it is, to a degree. I’m now thinking of increasing to 3 a day.

Weight Loss: GAH. I’ m trying not to be frustrated by this – I have gained. Even though I have been relatively strict on my eating (allowing some starch from time to time and a bit of ‘dairy’ every few days), I didn’t expect that to throw my plan of losing 5 lbs by my birthday so off track.

Mood:  this has been a bit off again, but not terrible

Bladder: the same as last month -> This has eased a bit I think. It’s at least to the point of my normal (which still isn’t where it needs to be)

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~Laura

Health Update Sept/Oct 2017

12 Oct

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

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

fightinglymemigraines

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

What I’m currently taking:

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

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

3 a day St. John’s Wort

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

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

Clonidine – prescription pain pills. Averaging 2 a day

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

essential oils

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

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

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

~Laura

Health Update 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!

the dreaded to-do list

8 Sep

This is not a topic that is relegated only to those that deal with chronic illness – rather this is something that I believe, touches us all in fits and bursts, throughout our lives. For me, it’s because of my health problems. Before I share with you what this struggle is, I want to point something out.

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I’ve noticed that it’s very difficult to verbalize this struggle with others because the first question one is asked is, “Are you depressed?” I am honestly so frustrated over getting asked that. I feel like they are missing everything I am saying and going right to something that they feel they can then ‘fix’ or whatnot. I’m really not sure why this seems to be the main reaction.

So. Don’t react like that, and I’ll share with you.

I’m overwhelmed and tired of struggling to keep up. Everything that needs doing, or things I want to do, rushes up to me sometimes and I. Just. Can’t.

And I mean that literally. I physically can’t. I mentally can’t.

I’ve noticed that if I get overwhelmed, my brain just shuts down. It retreats so fast that I don’t even realize it’s happening until I’m cocooned.

It hurts to walk so often these days – and if I walk a lot, my fibromyalgia flares in the evenings. I can write or crochet but only for a while or, you guessed it, my fibromyalgia flares. Cleaning the house is not only exhausting but it never stinking ends. (this one I know we all can identify with.)  To be fair, I like a tidy house, comfortable to live in but not messy. I can ignore things for a few days  but then I see it and it gnaws on me.

This list could go on, but as I said before, I know everyone feels this way from time to time – completely overwhelmed with their To-Do List. We all want to throw up our hands and say ‘I give up’ and leave the list – and all the messes – on their own.

So, let’s give ourselves permission to do just that. To leave them alone just long enough to pull back together the tattered edges of ourselves so we can get back to it with motivation. To deny the guilt that rises from taking some time for ourselves and ignoring those five loads of laundry and the entire house that needs vacuuming.  To realize that while the list will always be there, it doesn’t need to rule us.

~Laura

 

Health Update : July/Aug 2017

15 Aug

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

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

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

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

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

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

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

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

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

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

Dizziness:  This has only been present a few times

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

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

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I now need this shirt

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

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

Bladder: This had been marginally better but not anymore.

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

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

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

How have you been this month? 

~Laura

 

 

 

Encouragement for Living with Chronic Illness (part 3)

11 Jul

Here we are with part three folks! I hope you’re finding encouragement and information in these articles. If you want, you can follow my chronic pain Pinterest board where I pretty regularly put up funnies, articles and other such posts.

 

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What is Lyme Disease?  by Caravan Sonnet

The Truth about Pain and Suffering by Kathryn Shirey

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The Dark before the Dawn 

13 Tips for getting better sleep with Fibro by fedupwithfatigue.com

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To the Mom living with Chronic Illness who feels Inadequate by themighty.com

I do hope you’re finding a few articles that encourage you in each of these posts!

~Laura 

What do you do to help get through the pain?

 

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.

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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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