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LADA T1.5

    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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    Saying Goodbye to 2016 and Welcoming What Lays Ahead

    Goodbye to 2016 and Welcome to the New Year

    happy new year Curacao swim with a wild turtle

    It’s a new year but I’m far from being well.  I will look back and see some positives that 2016 brought me.

    A new Rheumatologist who is great.  She treats me like a human being and not someone just to see how does my new office look or why are you here.  That still makes me shake my head.  I’ve learned to space my appointments out as if I have more than one a day and more than three a week it gets to be way too much for me and my drivers.  I finally got a long awaited referral to a neurologist just days before Christmas.  I had a call early on the Monday morning and thought it was for another appointment on the same day, nope it was an appointment that I had NO clue about.  I arrived early and thankfully as the paperwork was more extensive than ever.  I was in with the neurologist for almost an hour.  He did say that the botox would help but because of my insurance rules I had to try one more medication for two months first.  So I’m on that medication until March with a return visit booked.  I’ve also been put into the waiting game list for an MRI of my head.  The Dr. did say that I’d need the botox in several spots including the spot where all my migraines start, stay, basically live, also in my neck and in my jaw on the left side.  The jaw part was surprising.  I have some jaw cracking and I know I grind my teeth but getting shots there surprised me.

     

    The excellent news is the head MRI is very early March at 7pm but that is so quick for an MRI where I… Click To Tweet

    Some good things in 2016 were my daughter getting into the Bachelor’s of Science, Nursing which is her dream job. Getting the okay and you must get away from the doctors.  Getting five (I think I’m at five?) doctors to agree that a trip would help with relaxation and my severe anxiety. Then getting the okay to spend a couple weeks camping after a couple months of both the hubby and me homebound for over two months, me with my illnesses and him with his broken leg repairs.  The couple weeks in Sauble was almost perfect.

    My mom moved out of our house and in with her 92 years young mother.  It was time and gram is happy to have her there with her.

    I’m still sick and take it day by day and hubby’s leg still isn’t right.  We worry that he’ll be needing to get the plate and screws out as we think it’s an allergy to the metal.

    We need to get our children who live in the house to do more around the house.  Hubby is working, I’m not able to do much with having more bad days than good so they need to step up.  Yes, school and work come first BUT family and their home comes before friends and fun and way too much sleeping.

    My Favourite Photos of 2016

    I don’t make “resolutions” as I will always break them.  I will list some things I’m going to work on doing better, though:

    • budgeting – meal planning, cut back on spending (subscription boxes)
    • blog on a sort of set schedule for me – sponsored blogs yeah they get done but personal ones go on the back burner
    • walking and yoga – again it’s not something that I can schedule but I’d like to have someone walk with me with the pupalups and get to yoga once a week
    • keep getting better rest and sleep – it has improved but the painsomnia can’t be helped
    • not feel guilty for what I can’t do – that’s a hard one but working on it every day
    • try to get my nails in order, take medications on time (more on that in a couple months)
    • get to the dentist to get the work done that needs doing

    I hope you’ll continue to be with me on my journey with lupus SLE, migraines, chronic pain, fibromyalgia, diabetes type 1.5, painsomnia, depression, anxiety, gastritis and whatever else gets thrown my way.  

    I’m going to #alwayskeepfighting because #mystoryisntoveryet ; Click To Tweet

    So keep fighting with me because we have so many stories to tell!

    Journey with me … mini2z

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