Do you know what I go through?

I found a list of common migraine symptoms – and when you read this remember that I have most of these 100% of the time – as in they never go away.  Let that sink in for a moment.

migraine-symptoms

and migraine-is-more-than-a-headache-the-many-symptoms-of-migraine/

Lets go over some of them together off that list.  I will add some of my own that are missing and mark the ones that don’t pertain to me.

Visual Aura (before the pain begins)

  • a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed – I have this almost 24 hrs a day
  • flashes of light and color  *  24hrs a day 
  • wavy lines  * 24hrs a day
  • geometric patterns  *Not really
  • blurred vision  * 24hrs a day 
  • partial loss of sight  *Not really
  • *I will also have hallucinations of things that are not there (spiders/bugs/shadows) mostly caused by medications that I take to prevent and treat the migraines/daily headaches I have.

Sensory

  • numbness or tingling on the face or upper extremities * 24hrs a day 
  • a sense that limbs are a distorted shape or size *No
  • heightened sensitivity to lightsound, and smells  * 24hrs a day 
  • smelling odors that aren’t actually present (like natural gas or something burning)  *happens a lot – mostly Gasoline, burnt bread, chocolate(that I am allergic to) dirt or dust, grass, something is wet or damp…
  • skin sensitivity and intolerance of being touched (allodynia)  *happens a lot
  • *things will feel overly cold or hot to the touch…or if it is a little cool to the touch I can’t tell if is it damp or not, and not in like a normal way, like my nerves cannot relay what it is they feel correctly – and the reaction of something being too hot might be delayed. 

Motor

  • partial paralysis  *Not really
  • weakness or heaviness in the limbs on one side of the body  * happens a lot
  • *with chronic fatigue comes chronic pain – so I have pain that radiates all over my body.  a migraine will make that worse.  also if I have had a CFS flare, it makes the daily headache worse or a chance of a migraine higher.

Cognitive

 Digestive
  • food cravings (particularly for carbohydrates, candy and chocolate)  * 24hrs a day 
  • stomach rumblings * 24hrs a day 
  • constipation  *I have IBS

Fluid disturbances

  • increased thirst  *Not really
  • frequent urination*Not really
  • bloating/fluid retention *Not really

Mental/Personality

  • fatigue, lethargy  *I have Chronic Fatigue Syndrome
  • mood changes  * yes
  • irritability  *sometimes
  • high energy  *sometimes
  • depression  *yes – I want to cry all the time
  • anxiety  *And panic attacks – thank you Botox for that.  I have not done the treatment in years yet I still have the panic attacks – plus I worry all the time that my support system will have enough of all of this one day.  Also adds to my depression 
  • nervousness  *yes see above
  • euphoria, feeling of intense well-being  *yes, followed by depression and feeling like it is all going to go wrong.
  • *I feel all alone – most of the time.  

Digestive

  • nausea  * 24hrs a day 
  • vomiting  *sometimes
  • intolerance of food odors  *sometimes
  • loss of appetite  *Sometimes
  • diarrhea  *Not really
  • constipation  *most of the time(IBS)

Skin

  • paleness  *Not really
  • cold, clammy hands and feet  * 24hrs a day 
  • facial swelling*Not really
  • goose bumps*Not really
  • bloodshot eyes  * 24hrs a day 
  • black circles around eyes  * 24hrs a day 
  • sweating  * 24hrs a day worse at night

Respiratory

  • frequent yawning    * 24hrs a day 
  • sighing  * 24hrs a day 
  • hyperventilating  *Sometimes
  • nasal congestion  *sometimes
  • runny nose  *Sometimes

Circulatory

  • changes in blood chemistry *Not sure
  • changes in blood pressure  * 24hrs a day 
  • blood vessel dilation  *not sure
  • difficulty regulating temperature  * 24hrs a day 
  • changes in heart rhythms  * 24hrs a day 
  • *blue fingers/toes

So I have added a bit of what I go through or feel.  I hope that this helps some of you feel not so alone, or gain a better understanding of someone you are close to who might have this horrible health condition.  Remember that a migraine is not a singular thing – it is a condition.  The head pain is only one phase of four – the third phase.   I will get into the different phases on another post.

My Life With A Flare…

I know I have been quiet and I am not going to say I am sorry.  I have had things going on, and I am sure you have too.  I hope you have missed me as I have missed this.  I wanted to share a little bit into my life – I read something the other day that was like someone took the words right out of my mind and wrote them down…

You Don’t See the Worst Days of My Illness Because I Hide Them From You

So I got to thinking that maybe I should write a little something about my “flare days” or what they mean to me.  This morning I woke up with a mild one, so it’s a good day as any to start.  When you read these remember that I am only 35 years old and have had most of these since I was a teenager/young 20’s.  Here is a bit of my everyday life with a small glimpse of what the flares mean to me. (and before you look at this and think TLDR – remember its my life, I don’t get the TLDR option)

  • I have lived the last 11-12 years with a constant 24hr a day headache – please let that sink in.  It never stops, it never goes away.  Even when the Migraine pain goes away, the headache pain that I have never goes below a 3 or a 4.  When I have a flare day it can go up to around a 6 or so
  • at the Age of 21 I finally got my diagnoses of Chronic Migraines even though I had started having them when I was around 4 years old my mom said but none of the Dr’s believed her.  When I was a teenager they were almost constant in my life.  I had a Dr when I was 16 who was convinced I was faking it, it wasn’t until I had my second Seizure (yes I said second) at 20 that she sent me for tests and it took her another 6 months to agree with the other Dr’s diagnosis of Chronic migraines.
  • I have pain all the time in my mid/lower back, but on my bad days it like to lock up to where I cannot move for fear of causing myself nerve damage or exploding a disc in my back.  This started when I was about 13 years old, of course no one cared – no one has still looked at my back or my hips
  • I have pain in both of my hips on a daily basis, on a bad day I can hardly walk. (did I mention I am only 35 years old BTW)  Its worse on my right side with sciatic issues.
  • I have bilateral subluxation of the patella – or in non medical terms both of my knee caps slide around where they are not supposed to be – its worse on my right knee and I should have had surgery when I was 16 and collapsed on it or again when I was 23 and did it again – when I was 16 the Dr gave my parents some BS line and sent me to Physical therapy – when I was a young adult I had an awesome DR who diagnosed me, but I could not afford the surgery nor the time off from work.  (I still can’t)
  • Both my ankles click and hurt, I have broken almost all of my toes and my feet go numb with the slightest cool temp.  OH, they will also have pins and needles if I stand for too long – good times.
  • I have issues with my Lady Parts – I cannot have children – I have to have surgery to removed polyps, and ties my tubes, but there again, I cannot afford surgery.  My Doctor also diapered on me and treated more like a number than a person so I am on the hunt for yet another new OBGYN – oh the joy!  I also have ovarian cysts – on both sides.
  • Just like most people with Chronic migraines – I have IBS
  • I have issues with maintaining a healthy weight, I was under weight for most of my life till around 21 – now I have been considered over weight since.  I could stand to lose 50/60lbs and be comfortable with myself.  I know that doesn’t sound like a lot to some people, but I have yo-yo’ed with my weight for some time now.
  • My Shoulders are sensitive to repetitive work, like a few weekends ago when I took on painting our master bathroom by myself and had to call in sick the next day because I could not raise my right arm. I also broke my right arm when I was a kid so I have some nerve damage in my arm and hand.
  • I have numbness in my hands when they get cold just like my feet, it was intensified with the medication that I take for my migraines but I had it even before I started to take it.
  • I have had chronic nausea for over 3 years now – it comes and goes, but typically lasts for a few days when I have a flare up.
  • I have acid reflux
  • My migraines are about 1-2 a week – most I deal with without medication and push through if they last just a few hours – the bigger ones that knock me on my butt – I end up taking medication for – last week I had to take 3 doses of medication in 24hrs – that is so hard on my body, but I didn’t have a choice.  I was in tears and almost in a panic attack.
  • Between my work and my home – the temperature is never warm enough for me and I am in pain almost all the time.  I always have a sweater on at work, I even have gloves and a blanket on my work chair.  At home I always have a blanket on my chair.  At night when we go to bed I am cold at first but then shortly after we go to sleep I get hot and will kick everything off.  If I get too cold or stay cold for to long, all my joints hurt and my head will start to hurt.
  • If I get too hot, and it doesn’t take much time out in the heat and where I live our summers are HOT – I will get light-headed, can (and have) passed out and feel sick to my stomach.
  • I shake, I get dizzy/light-headed for no reason.  I feel like the ground under my feet is shaking or moving.  I tripe over air and down I go.  I stub my feet all the time or miss negotiate doorways and clip my shoulders.
  • I can get exhausted from taking a shower, brushing my hair/brushing my teeth.  I have Chronic Fatigue Syndrome, so it doesn’t matter how much sleep I get, I am always tired, always ready to take a nap.  I fall asleep very easily during the day.  If I have a CFS flare – forget it – I have little to no energy to do anything.  My hair will not be washed, I am wearing my PJ’s or something close to them for most of the day and might not make it out of my recliner that often.
    • What a CFS flare means to me: I am extremely exhausted, like fall asleep any time during the day if I sit still for a moment kind of tired.  Yet no length of a nap will make it better, in fact after I wake up from a nap I feel almost like a panic attack or like I was drugged.  Taking a shower makes me wiped out and I shake or physically hurt from the water hitting my skin. (I have to take a HOT shower because the cold water will make my joints lock up.)  I will just feel “off” like there is something wrong but I cannot place it, nothing sounds good to eat, nothing sounds fun to do, nothing I want to watch on TV.  I just don’t want to do anything.
  • I have insomnia – have since I was very little and if I have a flare up of any kind it is not unusual for me to awake till midnight even thought I am exhausted and have taken medication to sleep.
  • I have panic attacks – they were never that bad until I had my last dose of Botox injections a few years ago for my migraines and they got supper bad.  Everyone that got them around the same time I did had the same reaction and mine have not really gone away.
  • I am on a restricted diet – I have to have low potassium, low sugar, low sodium, low-fat and non dairy if I can help it foods.  I avoid cows milk and limit my other dairy intake.  I also have to avoid Pork and lower my intake of red meat.  My body cannot seem to process the potassium in foods or water that I drink.
  • I was tested for MS, Lupus and various other Auto Immune disorders – the Lumbar puncture I had done said no for MS but leaned toward Rheumatoid condition – the Rheumatoid Dr took blood work and never called me back – so starting over there.  I still feel I have something like Lupus or Firbro and so does my Neurologist – she was the first dr to believe me in all of this mess.

So what do I do, I try to put a smile on my face and hide it from everyone.  Why?  Because when someone asks me how I have been and I try to tell them, they either back away from me like I am bothering them, or their eyes gloss over like “God, will this girl ever shut up, she can’t possibly be this sick.”  I get that all the time, “Well you don’t look sick…” “You were fine yesterday.” “You were fine and hour ago/15 mins ago…”  You have no idea how much your words hurt.

But, this post isn’t to make anyone feel bad, this is to make you understand, or try to somehow.  When I say I am sick, or that I hurt – understand that the level of pain that I am in – you will never fully see, because I try to hide it.  My poor Husband is the ‘lucky’ one who gets to see me sink to my knees and sob – yes sob like a 5-year-old asking “WHY ME!  What did I do?”  And cry so hard that I make myself sick because it hurts so damn much.  So don’t you ever, for one damn second think I am faking this.  I would not wish this on my worst enemy.

I have a few close friends who say they can see it in my face when I am trying to hide it, or hear it in my voice.  And I guess just over time it’s getting harder and harder to hide.  So there it is, a little bit of a view into what its like to be me.  Maybe you will better understand me, or someone just like me…or it offers someone who is just like me hope that they are not alone.

I don’t want you to feel sorry for me, I don’t want you to think I am weak – I want you to see how strong I am.  For all the people out there who hide behind the smiling mask, I am here with you!!  You are not for one second alone!

Hello Readers…

Wow, Its been since October 4th of 2016 since I posted anything – and I am so sorry for that! a lot has gone on since then…

  • We moved! That’s right we sold our house and moved finally! That was in Nov
  • I have been having lots of tests done and we have ruled things out but still no idea whats really the cause of my stuff
  • My awesome husband got my 1971 VW bus on the road! I had tears running down my face watching it roll out of the garage under its own power the first time – its been a long 3 years of working on it, but so worth it.
  • I am going to be an Auntie, my lil’ sister told us on mother’s day this year that she is due in Dec! on our mother’s birthday!

I have been winning lots of stuff off the amazon giveaways, and I have been getting lots and lots of samples that I have been slacking on getting on here – I know I have been a very bad blogger, but life got very busy with setting up house and the actual move.  And you guys all know that with my chronic fatigue, chronic pain and migraines…it takes a lot for me just to get up and go to work.  But I had to check in with you guys today, I felt the pull and the need to stop in and say HI!  I have also been doing really well on making and selling some homemade soaps, lotions, lip-balms, lip-gloss…Crochet items and soon I hope to be adding shirts with funny sayings on them.  I don’t make a killing, but just enough to buy more supplies and that keeps me happy.  a little play money and bringing joy to those I make the items for.

I recently made a crochet chicken from a kids movie for a foster agency in my home town that my work commissioned me to make.  It was part of our community outreach.  It brought me such joy to be able to do that.

Thus Endeth The Radio Silence….

So – my radio silence has been for a few reasons, #1 reason has been I have been one busy person!  After that the reasons involve health and life in general.

  • my potassium levels have gone up despite being on a restricted diet – means I retest in June and see where we stand.  Will also be tested for diabetes at that time.
  • Migraines have been so-so.  Getting adjusted to new medication and used to weather changes while on new medication.  This will be the first monsoon season I get to experience on this perticular medication.  Last year was the first for the botox so I am used to trying new medications during our rainy seasons.
  • trying to loose weight still is proving to be difficult.  As to that I have very bad fatigue and am very weak I really am having a hard time getting up and moving.  Plus its now 100+ outside – so YUCK!

We have been going camping about once a month here lately and its been amazing…I really have enjoyed the time with my husband, my in-laws and our fur kids.  The men did manage to even catch one small fish, that thye let go so he could grow up to become a bigger fish – but most of the time its just father son boding while “feeding the fish” as they have started to call it.  Alas I have yet to get them to take the gopro with them so I have yet to see any of their antics on video yet – but the stories they come back to camp with are very entertaining.

So I am looking forward to getting back to my writing, my sampling and my sharing with you all.  I have some things to write about so keep an eye out for some reviews to pop up here shortly…The next pinchme.com sample day is Tuesday the 14th at 12pm ET –  for those of you who have not signed up yet I highly recommend that you high tail it over there and go do that since you have some time left to do so.

I have received some tea samples that are super yummy and I will be sharing that with y’all along with a discount code and where to go order it on your own – they are an amazing company who know a thing or two when it comes to customer service so a big kudos to them.  I ordered a new tea pot just to brew the loose tea in because its so pretty as it brews – I know I am sucker for that kinda stuff, what can I say.  But I got it on sale with one day shipping on Amazon!  🙂

I will share with you as well as soon as I get new on my heath my dear readers, and I love hearing your words of encouragement and support as I go through all these times of uncertainty and change in my health and our lives.  I look forward to our next chance to share and I always look forward to hearing from you, my faithful readers.

Peace, Love and Boxer Butts!

 

A year of posts….

So WordPress has this e-book that has 365 post ideas – I believe that it might be a fun thing to try to do one every day.  Now I might not get to one every day, because like I said I am trying to be present in my life.  BUT, I might be able to write down in my journal, and then post about it later and do one or two at a time depending on their length.  Plus I will still be putting in my reviews, crafts, camping, cooking and life stories in here and there as well.  But I feel like to really connect and share with you guys, I need to dig deep, and I hope that maybe this e-book will help me do that.  And I don’t have to do each and every one – but – its nice to set a goal and attempt to meet it.

So – starting Jan 1st –  I will do my first post from the e-book:

“365 Days of Writing Prompts” A prompt to fire your imagination, each and every day
for a year…

Enjoy this year-long collection of writing prompts geared to
get you writing each and every day. We made them for you,
with love.
Check out The Daily Post for writing inspiration, tips and
techniques on making blogging a habit, and how to nurture
your audience and grow your traffic. You can even get some
friendly moral support from the blogging community.
– The Editors, WordPress.com

I hope you all had a Happy Christmas – and I hope you have a blessed New Years!

The 22nd of Dec was my 4th year anniv of being in Al-anaon.  For those of you who don’t know what that is, it is a recovery group for those of us who love or are close to an alcoholic or an addict.  For me it’s my husband.  He has 4 and a half years of sobriety and I have also been sober for 4 years with him, it was easy for me to give up any and all alcohol, it was nothing but a migraine trigger for me anyways.  I never really drank that much, never could because I had to take care of him.  But I never much cared for it anyways, it made me throw up and gave me a blinding headache before I even really felt a buzz.  So I can’t say I miss it one bit.

I am thankful for AA and Al-anon, for they gave us a safe place to share our feelings, a place that showed us we were not alone.  A place that was full of love, faith, HOPE, guidance, prayers, FRIENDSHIPS and kinship.  They had all been through what we were going through, they had all walked in our shoes at some point, some had even gone a little further or had it a little worse off, or hit there bottom a little lower – we even had some friends die while in the program and it just showed us that sometimes rock bottom for someone was death.

My brother-in-laws death still is something that feels like a bad dream, like we will wake up and he will still be here, but it was his poor choices that took him from us.  HE made those choices and no one could talk him out of them.  I thank God everyday that my husband is still with me, I can be thankful, I can be kind, I can give to others.

But enough about that – I have a whole other blog dedicated to that subject and you can hear all about it there if you like : https://chipinmyheart.wordpress.com/

I am taking the rest of the time off till the 1st when you will get my first post of the new year – till then – Be well, Be blessed, BE YOU!! Wishing Peace, Love and VW’s!

A personal note…

I would like to say how sorry I am for my lack of posts – My Brother-in-law passed away on the 11th of September and since then life has been very different.

  • In September, my In-laws, my husband and I all took an emergency flight to Oregon and spent 5 days with my brother-in-law’s Wife.  It was the first flight my husband has been on since sometime in the 90’s and it was the first flight we have ever taken together as a couple.  We have been on plenty of trips together but always in a car.

    image

    This was one of our fav places – we stopped here twice while were were there. Family owned and there were very friendly. I even bought a sweatshirt and a new Drink tumbler for work.

  • We have taken a camping trip and have started to plan a few more.  The original plan was to take one every month, BUT with Christmas and new years this month, plus it being abnormally cold in my part of the country this year for some reason – we might have to put off camping in December.  I am hoping that we can get a nice weekend in Jan or Feb but we might not do much till my Birthday weekend in March.  That has always kicked off our camping season anyways back when we were going to the dunes with the quads.  We would always go to the dunes for my Birthday.
    image

    View from the lake while Hubby and his dad were fishing

    image

    This kids is what we call a payphone….

    image

    Here are Dozer and Tuula out camping with us. Dozer has been camping before but this was Tuula’s first camping trip. And yes, that is me in my Doctor Who T.A.R.D.I.S. shirt.

  • I have been making so many gifts for everyone for Christmas this year that I might have yearn burn on a few of my fingers from it.  Just saying – y’all better love my efforts!
  • I still have a bunch of my homemade items from last years bulk Christmas gift making – so I am still gifting those.  And I am looking to add some new items to my list of things I can make.  My husband has made a few requests.  So I have a few things in the works….
  • We got another VW Micro bus – so now we have two – yes that’s right folks – two VW buses in our family.  His and hers’ and I couldn’t be happier.  So when we get it on the road and get to go to shows, I can bring my homemade hippie things with me and sell them out of our hippie bus – and up my hippie game to the next level!
  • And then there was my health, I have had migraines for a long time as you all know by now, but I have been felling worse and worse for a long time now.  I kept telling my Dr’s that something was wrong, but no one was finding anything.  I was cold all the time, tired all the time (and I don’t mean a little tired, I mean fall asleep standing up tired) I have no strength, very weak, no appetite, nausea all the time, but still over wt, heart palpitations, High blood pressure, Botox injections every three months for my migraines were getting to be too expensive…
  • So I am now on new Medication for my migraines – Good bye Botox! On a low Potassium, low sodium, low sugar, no dairy, and low-fat diet (already lost 15lbs since October)So then I found a new PCP because the last one I had after my other dr left the state was a joke – she never made time for pt’s and then refused to refill medications – it was a nightmare.  I had gone to the same clinic since I was a child (and maybe it was the best thing that had happened to me since I was just getting sicker and sicker anyways) and now I have the most amazing Dr – he ordered the most blood work I have ever had in my life – they took 9 vials of blood – yes I said 9 – they tested me for everything included food allergies – and found out my potassium was SCARY high – like where I was close to having to go to the hospital high.  No wonder my poor heart was freaking out.  But here is the kicker – my sodium was also high and those normally cancel each other out.  Yeah this Dr will soon find out much of a puzzle I am.

So – Still here, still getting samples and writing my reviews the best I can – have just been dealing with some depression and I have been keeping myself off the digital world and more in the real world.  And it is nothing off on you guys, I appreciate my readers, I really do, But I have to take care of me, and I have to take care of my family first.  And this has to come second in my life.

I hope you all had a very Merry and blessed Christmas and I hope you have a Joy fulled New Year.  I hope to post more often, but I also hope you can find it in your hearts to forgive me and to be understanding if I take time for myself and my family first and then get to my posting when I can.  Peace, Love and Boxer butts….

Last month recap…samples…winnings

So – last month I received a few free samples and for doing my missions and reviewing things and taking surveys – I received two $5 gift cards for Walmart, and two $5 gift cards for Amazon – Pretty awesome!  I can’t wait to see what I get next month.  🙂

 

Coming up here soon for review is Brookside clusters and Arm and Hammer dental care.  Doing the last min tweaks on my posts for the Kaboom toilet cleaning kit and will be posting that shortly.