Tag Archives: late stage lyme

Health Update – April 2017

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

Preparing for a trip with Lyme Disease

14 Mar

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

prpringfortripwithlyme

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

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

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

~Set dates

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

~ Plan a few activities while there

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

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

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

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

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

~ Stress about the fact that I now stress

~Wonder if I’ll sleep well while there

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

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

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

~ Tentatively move up date of departure

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

~Stress that I’ll feel well enough that soon

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

 

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

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

~Laura

Health Update – Feb 2017

10 Mar

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

fightinglymemigraines

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Laura

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

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Health update – January 2017

31 Jan

 

Well, folks, as I’m writing this I’m fighting nausea like nobody’s business – along with a migraine, so forgive me if it doesn’t all make sense.

fightinglymemigraines

Here’s the update from my migraine app from this past month : I have had 1 attack-free day. They average at 34 1/2 hrs. I’m (supposedly) getting 8 hrs of sleep a night. 76% of them occur on a weekday. The pain average is 8, minimum a 7, maximum a 10. Fatigue/achiness, muscle stiffness and headache are the top 3 auras. Neck pain, interrupted sleep and lack of sleep are the top 3 triggers. Likely triggers are interrupted sleep, pre-cycle and neck pain. Symptoms are neck pain, jaw pain and fatigue. Frequent start positions are temples, eyes, jaw, neck and base of skull. Relief methods that seem to work are clonidine, pulsatilla, oils and food/water.

~While I love having this app, it isn’t as accurate as I’d really like. part of that problem is that one must pay close attention and then input said attention into the app. So. perhaps it’s not fully the app’s fault. (coughcough)   To compare with last month’s though, the average time has gone down, while my nightly sleep has gone up! Most are now occurring on weekdays, and average pain has gone down one level. Fatigue is still a major issue; neck pain is a consistent trigger and symptoms have stayed the same.

What’s interesting about this ‘synopsis’ is that I would have said the pain had gone up this month…. but! I will trust what I put in the app and roll with it.

Overall Health: Honestly, I’ve felt so rotten this month that it’s really started to affect my moods and productivity. The chronic pains that have flared up again are so bad that I just don’t want to move majority of the time. Heaven save me from living on the couch.

Treatment: I made the mistake of running out of several vitamins/supplements at the same time and have been paying for it….dearly. I’ve added almost all of them back in, as well as iron and feverfew. My Dr. says she has rarely seen someone as low in iron as I am. I’m also super high in fibrinogen, a protein that is essential for blood clot formation. I’ve been needing to take 3-4 clonidine a day for the migraines.

Migraines: They seem to have gotten more intense as the month has progressed. Only one hit a ’10’ though. something to be grateful for. The clonidine and natural pain killers I use haven’t been very effective. At all. Nothing has been touching these things = super fun, that.

Digestion and TMJ : Digestion has been some better. Jaw pain is about the same.

Sleep:  Aside from taking Theanine a few nights last week, I haven’t been taking anything to help me sleep. It’s so nice. I am waking up once or twice a night and am sometimes still able to get back to sleep when I wake early in the am. This is not to say that I’m waking up rested and refreshed (I was probably a pre-teen the last time that happened). I’m fighting exhaustion , and taking naps all the time.

giphy

Memory/Brain fog:  This has been a continued struggle. I am praying that the iron i’m taking helps with blood flow and gets more oxygen to my brain, thus improving this. Fog hasn’t been too awful, but gets worse when i’m in a crowded room.

I get to add another few items to this months list:

Vision– my eyes are having a hard time focusing, even with my glasses on. it’s of course worse when I’m tired or the migraine is worse but it’s a pretty constant thing these days.

Feet/leg cramps –  these are back like crazy. i’m thankful that most of the time it’s just a matter of tenseness rather than straight up cramps but it’s still painful.

Dizziness- i’m having to remember to stand up slowly. no sudden movements.

Joint pain – like none other, people.

Nausea – Out of everything I’m adding here, this is the one that I’d ask to go away first. it’s what’s keeping me down today, when the migraine isn’t bad.

Moodiness – yes, it’s bad enough that it gets its own category. I was so glad when my moods evened out months ago that it’s frustrating this problem has resurfaced.

giphy1

I have also lost almost 5 lbs – and then promptly regained it.

Well, there it is – January’s health update! I’m not off to a very good start this year but my doctor is such an encourager, that I’m clinging to her optimism. I’ve also been going to a chiropractor for my back/hip pain and am summoning up the courage to call the dentist and make a TMJ appointment. So perhaps February will see a change.

Check out my Chronic Pain page to see all my health updates and health advice!

~Laura

 

 

 

Health Update – 12-2-16

2 Dec

Happy December friends! Thanks for stopping by SGL today, I’m so glad you’re here! Once a month, I review how I’ve been feeling – how the treatment for my Lyme Disease is going, and all the other fun things I’ve got going on.

fightinglymemigraines

November was a month of contradictions. For the majority of it, I felt really beyond awful. But when I felt good – I felt really good! There wasn’t much in between for me. I had some ‘fun’ new symptoms start/kick it up a notch and my migraines tended to last an average of 55 hours. Yep. 55 HOURS. If that’s not fun, I don’t know what fun is. Stores are still places of pure torture wrapped in spikes and crocodiles.

For a quick report from my migraine app – Migraine Buddy –  88% happened on weekdays, 12% weekends. Average pain level was 7.6 , high was 9 and low 6. My top Auras were fatigue/achiness and muscle stiffness. My top 3 triggers were neck pain, interrupted sleep, pre cycle. Top 3 symptoms were neck pain, fatigue and throbbing pain. Frequent start positions were temples, eyes, jaw and neck. Reliefs that seem to work consistently are : clonidine, oils, belladonna/pulsatilla and heat pad.

Overall Health: Much the same as October, ROUGH. Like I said, fun fun symptoms to keep me guessing. Lights and sounds started hurting bad again. Constant calf cramping (literally 24/7) along with severe random cramps no matter what I am doing. A harsh cough a few times a week (you know that deep, painful cough you get when you’re sick? yeah. that.) Daily fatigue/achiness.  Ringing in ears off and on.  Some nausea when I move. I lost a few pounds, only to promptly gain them back.

Due to the calf cramps, sleeping has been difficult. For a few weeks, I wrapped up in my cozy electric blanket most every night – it was the only way to ease the pain so I could sleep. I’ve started soaking my feet more often, hoping the epsom salts helps.

Treatment: I have backed off the garlic pills, to just one a day and have added back in the Xiao Chai Hu Tang. I started with one pill a day and have gone up to 2 a day this week to see how I do. Otherwise, I am on everything my doctor put me on last time I was there.

Migraines:  So, on one hand I feel they are getting better. On the other – 55 hours. I’ll take what I can get but aren’t they supposed to get shorter too????

Digestion and TMJ :  digestion has been touch and go – what with feeling so poorly it was hard to cook (read: pasta and french fries) and juicing pretty consistently…. I definitely digest better when I stay away from breads/pastas/etc, and drink at least 3 glasses of juice a day. (juice being kale, cucumber, celery, carrots, lemon, ginger and apple). My jaw hasn’t been good. often it’s been an indicator that pain/migraine was on its way.

Sleep: My app says I’ve been getting about 7 hours a night but I certainly don’t feel like it! I am still waking up 2-3 times a night to go to the bathroom, and sometimes can’t go back to sleep the last time. I’ve been taking a lot of long naps lately – but still am exhausted by late evening.

Memory: this might actually be improving – or at least it stopped its downward spiral. Being in Bend for a week with family and friends, I noticed I wasn’t saying ‘um’ as much, or searching for the correct word. Granted, I still did it but I was able to carry on a coherent conversation and that wasn’t the case a few months ago.

Daily Vitamins/Supplements:

Clonidine – averaging 2 a day (although many, many days these past few weeks I’ve needed 3, and sometimes 4 to get through them. ugh)

Pulsatilla and Belladonna – I’d run out of one in time to replace it before I went on vacation and then promptly ran out of the other. oy.

1 each of B complex, B2, Calcium, D3, Fish oil, Copper, Garlic (trying 2 every other day of garlic)

2 each of Magnesium, Olive Leaf Extract, Vitamin E

3 Evening Primrose Oil

6 EHB

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

1/2 tsp Silver nano ( 2x a day)

1 TB Apple Cider Vinegar in a glass of water in the mornings

 

That’s all I can think of. I am feeling like this Lyme Disease is kicking my butt right now, so it’s probably good timing that I’m going in to my dr. tomorrow morning to get some motivation and encouragement (yep, she’s that awesome) along with some acupuncture. I don’t know if some of this is herxing or what, but I’m done.

*on a purely fun side note, I won nanowrimo!!! i’ll tell you more what that means next week! *

~Laura

Feel free to check out my other health updates here on my Chronic Pain page!

Health Update – 10-31-2016

31 Oct

Note to self: Don’t ever run out of EHB. you’ll regret it.  also, take gelsimium frequently, that stuff is miraculous.

fightinglymemigraines

 

Overall Health:  This month was rough. The pain levels were either at a 7/above or were nonexistent. My new migraine tracking app, Migraine Buddy, says my migraines last an average of 20 hrs; pain starts mainly in temples and back of neck; triggers are too much activity, interrupted sleep and neck pain; main symptoms are fatigue, neck pain and throbbing pain and that the combo of clonidine, heat pad and sleep always help ease the pain. In other words, I’m enjoying the new app but it isn’t completely accurate on a few things. I have pushed myself and gotten out with the dogs more this month. I was also able to survive almost all of the celebrations of the High Holy Days this month without collapsing or leaving service early like I did/had to last year.

 

Treatment:  I have been on all the added supplements/vitamins for 3 weeks now. Aside from starting to smell like GARLIC all the time, there haven’t been any adverse reactions. I  did end up buying Garlitrin from Integrative Therapeutics, here’s a part of their description , ” Enteric-coated tablets reach the small intestine, so you get garlic where you need it, and avoid garlic breath.”. So far, my OH hasn’t said anything about how I smell like garlic, so I’m really hoping these do the trick, because I am supposed to be taking 4 of them a day!

 

Migraines: Severe. Like my app said, 20 hrs is the average. The most ‘exciting’ was the one that lasted 5 days. oh yeah. that’s how I like to spend my days. mmhmm. (NOT)

Digestion and TMJ:  Digestion has improved marginally. Jaw was doing better before this past week.

Sleep:  It’s improved since last month.  I still don’t feel like I’m sleeping well but I seem to be averaging 7/8 hrs a night – with waking up 2 or 3 times. Now if I could only be sleeping deeply enough to wake refreshed…naps aren’t daily but still frequent

Memory:  I haven’t noticed it worsening, honestly I tend to forget (haha) that it’s as bad as it is until I’m in conversation with someone and then it hits me.

Daily Vitamins:

Clonidine – probably averaging 2 a day

Pulsatilla and Belladonna – the more often I remember to take them, the better they work, shocking, I know

1 each of B complex, B2, Calcium, D3, Fish oil, Copper, Garlic (trying to up to 2 a day of garlic)

2 each of Magnesium, Olive Leaf Extract, Vitamin E

3 Evening Primrose Oil

6 EHB

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

1/2 tsp Silver nano ( 2x a day)

All that adds up to one very full weekly pill box, let me tell you! I recently found a website where I can buy what I need – and they don’t charge shipping! I’ve only ordered EHB and the Garlic from there but they seem to be legit and are very prompt in filling their orders!

Stick around and check out my other health updates!

9/23/16

8/23/16

Symptoms of my Lyme

7/27/16

Fighting Lyme and Migraines

The Big Health Update

 

Come back Friday to hear how my first week of Nanowrimo went!

~Laura

 

Health Update – 9/23/2016

23 Sep

How in the world can September already be almost over?! Although, the coming of all things pumpkin and fall does help ease the shock of it 😉

 

fghtnglyme92316

Overall Health: since getting back on the majority of my vitamins/supplements I’ve been better – comparably. For about a week I was stuck on the couch due to unbelievable weakness and exhaustion. I haven’t been quite so negative. I haven’t had to nap so often lately, but sleeping at night has been really rough. I’ve been able to walk the dogs a few times a week, which benefits all 3 of us.

Treatment: I went in to my doctor the beginning of this week and we changed up what I’ve been taking, and she sent me home with several new things to start! I am currently off the Xiao Chai Hu Tang (possibly the cause of my extreme exhaustion last week) and have started taking Silver. (yes, silver! apparently while it’s very gentle on you, it kills things, who knew?) Tomorrow I start taking EHB, then if I don’t react negatively to that, 3 days later I start Garlic pills (oh joy). 3 days later, Vitamin E and then, you guessed it, 3 days after that, Copper pills. She’s also told me to start drinking 1 TB Apple Cider Vinegar in the mornings.

Migraines: Killer. They have been going from a 5 to an 8 (or higher) in the blink of an eye, making thinking (and anything else really) incredibly difficult.

Digestion and TMJ: Neither have changed here-which means they aren’t that good… but while my jaw has been hurting a lot, it doesn’t pop as much as it used to! Silver lining right there!

Mood: It’s been better overall this past month, thank goodness. I feel like I mostly am back to myself although I do still feel a tad anti-social

Sleep: Except for the past few nights, it’s been atrocious. Of course, the nights I do sleep better I have nightmares..sigh.

Memory: Once again, it hasn’t improved but aside from freaking out late one night because I couldn’t remember words to songs that I’ve known for ages, I haven’t noticed any worsening.

Daily Vitamins:

Clonidine – for most of this month I was taking 3 a day but since Sunday it’s backed off to 1 or 2 !!!!!

off the Xiao Chai Hu Tang

Pulsatilla and Belladonna – finally got some more of these amazing tinctures!!!

Here’s a full list  – although I will have to update this next month!

Stick around and check out my other health updates!

8/23/16

Symptoms of my Lyme

7/27/16

Fighting Lyme and Migraines

The Big Health Update

 

Next week is the monthly Book Review, come back and check it out!

Have a fabulous Fall weekend,

Laura

 

 

 

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