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Chronic Illness Bloggers

    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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    After The Storm

    After The Storm

    Somewhere, in my memory box is a poem called After The Storm that I wrote. I haven’t found that box and hope it survived our flood.  It also makes me think of the poem, After a While by Veronica A. Shoffstall and the blog I wrote featuring it titled: Hopeful.  

    What does this have to do with After the Storm?  Well, I will find the poem but the storm for me has been my health but more recently we experienced a catastrophic rainstorm.  We had almost seven inches of rain in less than three hours.  As a result of this storm, we flooded, in our yard and then in the house.  We also got rain from the roof that leaked as a result of the catastrophic windstorm in March.  (that’s another rant)

    Photo from the Windsor Star – link on photo

    What the Ditch/Drain is like normally

    We have this check valve or back up valve that is installed so we don’t get water.  Well, the valve failed.  At first, the water was just in the yard, on the street but then it came rushing up the drain in the floor.  When we moved into this house, it was covered with tinfoil.  The only water we’d had in 22 years was when the hose broke on our washer when we were out at a birthday party.  We have a wet/dry vacuum but it would fill in seconds but our son brought home a sump pump, then our son went to my grams to get her spare sump pump.  We had two pumps going in the basement and we were able to keep it to about 3-4 inches when our neighbours had a foot to a foot and a half of water.  On top of all this, we were getting leaks in the bathroom and kitchen.  The kitchen isn’t so bad but the bathroom is another story.  Our insurance company, Allstate, has been great.  Our basement is covered to our maximum allowed and because we did so much of the hauling of the wet and severely smelly carpet, boxes and clothes out to a bin we ordered, we will not have to pay the deductible.  The roof that was supposed to be replaced after March is now going back to the insurance company to reassess the damage because it now includes water damage that shouldn’t have been there.  We are waiting on that.  After the storm, we already have the cheque from Allstate and can start to put this part of our life back together.

    L-R, Backyard Lake, Flooded Road, Flooded basement, first pile of wet, soggy basement items, The Sasso Bin with load #2, the Red Sky at Night After the Storm

     

    I’m also working on my health.  My health storm isn’t over but I’m choosing to find the balance.  I’ve become a doTerra Wellness Advocate to save money on essential oils for my personal use but it’s become so much more to me.  I can look in every room of the house that and see doterra products, be it oils to shampoo, to soap to a diffuser or two.  Slowly, I’m adding more and more natural, healthy for me items into my life.  I’m excited about doterra and the direction it’s heading for me.  I have my now too small box of oils, a larger one is on my Amazon wishlist!  I have doterra products all over the house now, hand cream that is not greasy, soap and shampoo in the shower.  I plan on making my own bath bombs because the store bought ones are just too strong for me.  I have lemon and wild orange on my window sill for adding to water.

    I’m still getting nerve block shots in my head, neck, back and SI joints weekly.  The hope is to be able to go every two weeks soon.  I have scheduled the appointment to see my Endocrinologist so that we can all work to trying the LDN. I have every doctor on my team visits in the next two weeks, after trying to only schedule two per week.  It is actually exhausting getting ready, getting there on time only to wait for long periods of time.  I have been really out of sorts and finally figured out that I was doubling my iron pills and not taking my antidepressant.  Yeah, that was a really stupid thing.  Lesson learned, look at the actual label before filling up your Pill Drill for the week.  Our new mattress set will be delivered on Friday, so we are hoping for a great night’s sleep.

    Sleep, I need sleep, it’s just been so exhausting.

    mini2z … journey with me

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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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