My Three Worst Symtoms That Come With My Chronic Invisivle Illnesses

My Three Worst Symptoms 

 

I have several symptoms that I live with every single day due to Lupus, Fibromyalgia, Hashimoto’s and Diabetes.   Some of the symptoms are normal that you get used to them.  There are others you don’t ever get used to such as a constant headache, joints hurting or chronic fatigue.

1. Nausea – for me nausea has been a constant for 24 hours a day and 7 days a week going on for over a year now.  I’ve had two children and never had morning sickness this bad with either of them.  My doctors have no clue as to why I’m experiencing nausea, only that it’s “lupus related”.  I really hate the catch-all phrases like Lupus Related, Oh that’s just the Fibromyalgia, or it’s the medication.  I take a medication daily that is prescribed to person’s undergoing Chemotherapy.  I also take Gravol in which I can buy over the counter.  There are days that every movement causes nausea to increase.  I also wear sea bands quite frequently and I’m not even sure that they work.

2. Memory or Brain Fog – for me my memory has become so bad.  I have so many apps on my phone to help, I use sticky notes on my computer and I have things written on real paper all over the house. I try to keep things in the same spots or I will forget where the item is when I need it.  If I’m talking to you I may forget what I want to tell you mid-sentence.  It’s bad and getting worse.

Sleep for me is never what its supposed to be because I don't have restorative sleep Click To Tweet

3. Pain – for me I can say my whole body hurts.  I have chronic migraines and I wouldn’t wish a migraine on anyone, ever!  I also have pain in all my joints, some are worse than the others.  For me, the arthritic pain started in my feet.  Now it’s my hips, knees, shoulders, neck, back and my left SI joint.  How one part of my body can cause so much pain is just baffling.  The SI joint pain causes me to basically sleep on my back and I’m a side sleeper.  If I move, there is a grinding of bones as I move from one side to the other.

Sleep for me is never what its supposed to be because I don’t have restorative sleep.  Since I bought a weighted blanket, my sleep has been much better and I’m not as restless.  A weighted blanket is a tool I’d suggest for anyone who has chronic fatigue due to illness. I bought mine from Red Barn Blankets.  I was able to choose the size, material, and the weight.  They also washed the cotton prior to making the blanket because materials can cause me to get rashes.  I’m also seeing a pain care doctor weekly who now gets all my laboratory work as well.

I know that you really can’t ever get used to any symptoms but they become part of your new “normal.”

What are your top three symptoms that you just can’t “get used to”?

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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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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