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Hashimoto’s

    Feeling Lost

     

    I’m okay, I’ve been feeling completely lost …

    I’ve been feeling completely lost. I’ve been playing it’s not anything, just my sugar, just my blood pressure but something is wrong. Today I go and get a heart monitor that I have to wear for the next two weeks.  I go after a week to have it read and schedule more tests.  My daughter seems to think that I have an arrhythmia of some sort and I will need a pacemaker, that’s the nurse in her speaking I’m guessing.  She’s the type of matter of fact speaking her mind person.  You see, she’s been with me for a few of my most recent fainting, shaking episodes. Two of those episodes were in a few short hour time span.  I get dizzy, sound is very distorted or I can’t hear at all, my vision goes blurry, I get a tingling in my arms and hands, I can’t stand, I’m tired and after I’m tired and my head hurts.  This scares the crap out of me  My blood sugar levels have been within normal ranges and my blood pressure levels have been within normal ranges so testing my heart it is.

     

    I’ve retreated so far into me that I feel lost

     

    If you just stumbled onto my ramblings, then welcome.  I’m a Chronic Illness warrior fighting Lupus, Fibromyalgia, Chronic Migraines, Chronic Pain, Diabetes and Hashimoto’s Thyroiditis and to top it off, I am battling with depression and anxiety. I haven’t written a blog in a few weeks because of that depression and the feeling lost.  Writing has always been my escape but I couldn’t seem to bring myself to write.  Seems like I get two steps ahead and then four steps back with no end in sight.  The goals have been to get me stable and see how things go.  Well, it’s been over two years since I’ve been off of work and I miss working.  I know I can’t work the way I am with any of my issues, hell I can’t even read and remember what it was I was reading.  My anxiety is lower but I haven’t driven much in the past two years and currently, I’m terrified that something will happen to me if I drive.  I’m alone a lot of the time and I like people, I like talking to people and I miss that interaction.  I’ve retreated so far into me that I feel lost even after two years of treatment.

    I hate needles ... I needed to try Click To Tweet

    I’m working on a blog about the Therapeutic Nerve Therapy that I’ve been getting at the Pain Care Clinic but I’ll share a brief description.  I started out ten weeks ago but I’m on week eight of getting shots.  The shots started out in my spine and in the lower back and they’re directly in the nerves.  Oh, I hate needles but if it was going to give me relief (it has some) then I needed to try.  The doctor running the trial is amazing.  I like him and he’s informative about all the side effects, adjusts the sites as needed and increased the sites as well.  He’s also given me some extra cortisone shots into my SI joint.  More on this form of torture and relief to come soon!

    I’m okay and not in a bad place in my head even with all that I’m dealing with.  I’m still mourning the loss of who I was while finding the new me.

    I hope you’ll come back and check out future blogs. I’ve received and will be receiving some products to try and even the pupalups will be getting some products to try as well, so I hope you’ll check those out too.

     

    Journey with me … mini2z

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    Update on my But I Am Sick page …

    I currently have three autoimmune diseases and they are also invisible illnesses.

    I currently have three autoimmune diseases ... Click To Tweet

    Hashimoto’s Thyroiditis

    In 1994 when I was pregnant with my son I received my first autoimmune diagnosis for Hashimoto’s Thyroiditis.  I saw an endocrinologist when I was pregnant and then he dismissed me after.  I’ve only been under my family doctor’s care for most of the time.

    Type 1.5 Diabetes or Latent Autoimmune Diabetes in Adults or LADA

    In April of 2012, I received a diagnosis of Latent Autoimmune Diabetes in Adults or LADA as a short form.  I was first diagnosed as a type 2 but when I saw my new endo I was then told I was a LADA or a type 1.5 or a progressing type one. I had never heard of it but it’s the adult version of diabetes it just takes everyone a different amount of time for the body to kill the pancreas. I am currently on three different pills to control diabetes and have been begging for insulin for about a year now.

    Lupus

    In November of 2014, I was finally diagnosed with Lupus SLE.  It had been three years of feeling like I have the flu. No one test or person is the same with Lupus and mine seems to not like my liver. I get only a faint butterfly rash on my face and it comes and goes.  I’ve had times where I’ve slept for two days straight and taking a shower means I have to nap afterwards sometimes. I’ve been delayed being put on Plaquenil because of the liver issue that isn’t an issue.

    Fibromyalgia

    This is my Rheumatologist’s catch-all for my other symptoms.

    Chronic Pain

    I have chronic pain in my whole body.  I have it really bad in my joints from lupus and fibromyalgia.  I’m currently undergoing some nerve therapy shots to my back, hips and SI joints.

    Chronic Migraines

    My migraines have plagued me since I was in my early 20’s.  I got my first one about a month after a bump to the back of my head.  To this day my migraines still occur in that spot.  I’ve written a blog about the story of my migraines.  My current treatment is receiving Botox.  You can view that here.

    But I am sick, a diary of my invisible illnesses …

     

    Journey with me … mini2z

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    Botox for Migraines  – Yes, 24 needles 


    Botox for Migraines!  Yes, 24 Needles!

     

    Let’s go back in time a bit and I will give you a bit of history on my Migraines.

    When I was 24 or so, my then fiancée and I were horsing around and we slipped on the hardwood floor.  I went backwards and hit my head on the dining room table.  OUCH!  It hurt and I had an immediate headache, swelling and bruising.  Almost a month later I got my first migraine and it started where I hit my head.  I was in bed for almost three days and it was brutal because I had no clue what was going on.  I suffered through the next which was only a couple of weeks after that.  The next one landed me in the ER because the pain, nausea, vomiting, dizziness and desperate need to be in the dark was too much.  The ride to the hospital and waiting in the ER was torture but that’s when I was told it was a migraine.  They gave me a shot for pain and nausea along with two IV bags of fluids as I’d gotten dehydrated.  I was referred to a neurosurgeon who I saw in the hospital about three weeks later.  He confirmed that I had migraines but no it could not have happened to me by hitting my head.  I disagree with that but okay.  I had a diagnosis.  I found out that this is what my poppa had suffered from all his life.  I just always knew to be quiet if he was in his room with the blinds and doors closed.

    The diagnosis and journey with medication and trying to get the migraines under control before they start was long.  I didn’t get migraines while pregnant with either of my kidlets which was a godsend.  Migraines would come on without much warning that I could tell at the time.  Now, I get an aura (didn’t understand it back then) that I’ve always had prior to migraines.  We had tried Imitrex but it landed me in the ER with chest pains.  Fiorinal C1/4 would become the migraine medication that worked for me along with Gravol, which is an antiemetic.  Migraines have me in my room with room blackout blinds closed tight. ear plugs in with an ice pack on the back of my neck, antinausea medication, a flat ginger ale and pain medication.  Sleep and time are really the only things that work for me.  Over the years, I’ve done all the eliminations to try to find the triggers and the only one that I can find is chocolate.  I can have a couple of pieces, a chocolate bar or a piece of cake but if I have more I’ll pay for it later.  My other trigger is the weather.  It’s any change in the barometric pressure; rain – yes, snow – yes you name it, I get a migraine.

    That neurologist all those years ago was the only one I ever saw.  Fast forward to 2014 when my health took an even further nosedive when I started collecting specialists.  I was referred to a pain specialist and neurologist in 2015.  On December 19th I received a phone call reminding me of my Thursday appointment in just a couple of days.  I was pretty shocked because I’ve been meticulous about organising my appointments.  I confirmed it and put it on my schedule.  I was really impressed with the doctor from the get go.  Nice low lighting so as to not trigger migraines, comfy chairs (really important to a person with chronic pain) and short wait.  I was in the appointment for almost an hour and left with a prescription I had to try before my insurance would cover the Botox, a referral for an MRI and prescription for the Botox and a plan to work on getting my migraines under control.

    My follow-up appointment went well.  Just a few days later, I received a letter from my prescription insurer that they would cover the Botox and the guidelines.  I called the doctor’s office and yes for a cancellation got an appointment early the next week.  I had to bring $150 cash as OHIP doesn’t pay for the administering of the serum but it’s better than $1000.

    The big day came, my mom drove me.  I went to the pharmacy in the medical plaza because the doctor likes the serum to have just thawed.  I guess that’s the best way to use it and the doctor’s preference.  Again, waiting is only minutes.  Then he tells me about the 24 shots and the initial map that he uses on all patients the first time.  The second and subsequent visits would allow for the customization of the injection points.

    Then he tells me about the 24 shots Click To Tweet

    Side effects were very minimal for me.  I had some pain in my left ear area and will inform the doctor on my next visit.  As for the not being able to move my eyebrows properly, I haven’t seen this issue or for me, it’s a non-issue.

    My next appointment is in June and so far my migraines are still present and have not reduced in numbers.  Spring with the weather changes is always a horrible time for my migraines.

    Do you get migraines?  Are they affected by weather?  Have you tried Botox?  I hope you enjoyed reading my migraine journey and will share your migraine journey with me!

    Journey with me … mini2z

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