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Lupus

    Feeling Some Hope

    Feeling Some Hope

     

    I wonder when my life became a revolving door of doctor’s appointments, nausea, fatigue, chronic pain, migraines, and the list goes on.  I spend my time managing my life around my illnesses.  I have a no more than one doctor appointment in one day due to the crappy chairs in the waiting rooms that cause more pain, doctors falling behind because it always happens.  I have a few doctors that I get in right around my appointment time.

    I’ve had to have a few doubled up appointments because my Pain Care doctor wants to have me try Low-dose naltrexone or LDN.  I’m a good candidate but it entails having all my doctors aware and on board so that we can work quickly if any complications arise.  What is LDN?  Well, the short answer is it’s a smaller dose from .05 to 4.5 mg compared to the 50 mg dosages that are given to persons going through opioid withdrawal.  The LDN is what’s called off-label because they’re still doing studies on it.  Yes, I feel like I’m part of a study, I’m not but the process has been hard fought.

    What is low-dose naltrexone and why is it important?

    Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.

    Source:  http://www.lowdosenaltrexone.org

    My conditions of Lupus, Depression, Hashimoto’s, Fibromyalgia, are just a few of the conditions that LDN can help.  I’ve also read that it can help with migraines.  I’ve lost three years of my life so far to the storm that my body has gone through.  I’m currently seeing a General Practioner monthly, my Pain Care Doctor (anesthesiologist) weekly for therapeutic nerve injections, Psychologist and Psychiatrist both vary between every 4-6 weeks (it was at every two weeks), my Rheumatologist, I see quarterly now but I can call if I need to see her sooner and then last but not least is my Endocrinologist who I see twice a year but I went in to see him three months early so that we could get this LDN started.  I also supplement my doctors with massage, chiropractic and essential oils.

    My Endocrinologist has applied for a FreeStyle Libre Glucose Monitoring system.  The fears are that I’ll end up in more hypoglycemic episodes in addition to the high sugars.  I think it’s a product that I’ll love.  So please cross your fingers that I get approved for this device.

    In between all these doctors appointments, I try to keep up with something in the house be it dishes, folding laundry, sweeping up dog hair on top of my chronic pain, nausea and almost always present migraine.  My daughter has gotten me to the actual cinema a couple times and the new lazyboy recliners are any spoonies friend for a three-hour movie.

    I’ve been more “lupusy” of late, I basically fell asleep on Thanksgiving at the table and then slept for two more days.  For me, the lupusy feeling is more achy joints, constant headache, more nausea (is that possible?), itchy and low-grade fevers, basically the feeling like having the flu but it doesn’t ever go away.

    This week on deck, my shots aren’t until Thursday and I have a 2nd Dr appointment that day.  I have only one other this week so I’m feeling like it’s a slow week.  I have a pile of lab work to get done but the majority of the vampires are on strike and the couple times I’ve gone to the other labs, they closed really early because well everyone needs bloodwork.

    I had a good day with my daughter

    I feel like this blog post was so technical but for me, it’s exciting that all my doctors are on the same page, I may be on the LDN soon.  Now back to the regularly scheduled chaos of getting our house back to pre-flood, my daughter and her friend painted the first coat in the family room and it looks good.

    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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    Where Oh Where I Have I Been?


    Where Oh Where I Have I Been?

    I haven’t written a proper blog since December.  I can only think that I haven’t felt like writing because of my depression.  I have always loved Christmas and the holiday season but since I’ve been battling with all these illnesses is the reason that I haven’t found my new normal.  I’m trying to find the balance but I don’t feel like I’m there yet. Christmas was an amazing time with my family.  We spent Christmas Eve at my mother-in-law’s and Christmas my mom, gram and mother-in-law came to our house.  I spent the next few days recovering because I should have napped both days but I pushed my body too much.

    I finally saw a neurologist just before Christmas.  He spent almost an hour doing the check up and prescribed a medication that I had to try before my insurance would pay for the botox.  The botox will be in three spots on my head.  I’ve also been referred for two MRI’s of my head, back and hips.  The hope is that they can do both of the MRI’s together so I don’t have to go into the machine twice.  I am claustrophobic so two tests won’t be fun for me. March 6th will mark the first and hopefully my only MRI but I know I can handle two being mildly sedated for them at the very least.

     

     

    I posted this on my New Year’s Post but I don’t make “resolutions” as I will always break them.  I will list some things I’m going to work on doing better, (working on) 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 the work that needs to be done.

     

    Today is Family Day in my province of Ontario, Canada.  It’s a relatively new holiday created so there was a day off between Christmas and Easter.  It’s February 20th and it’s already 48 degrees out.  My dogs aren’t complaining about wanting back in after two seconds outside.  We had record high temperatures on Saturday.

    On Saturday, I finally received the call from the pain clinic.  I have my two appointments. The first is approximately 1.5 hours with twelve pages of documents to fill out.  The second appointment is about two hours.  She asked if the dates would work and I said, no matter what I’d work it out because I’ve been waiting for these for almost a year.

    I hope you’ll grab a cuppa tea and continue on this journey with me.

    mini2z

    mini2z journey with me

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