Category: autoimmune illness

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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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 …

 

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Blogger’s Writer’s Block – My Stuggle Is Real

 

Blogger’s Writing Block – My Struggle Is Real

I’ve only written blogs lately about products I’ve sampled.  I love writing. I love reading. I haven’t been able to enjoy either for quite a while.  I can’t remember what I’ve read, what I’m doing in the room, not even remembering why I’ve gone to a website.  Writing seems to flow when I’m focused or have a commitment to fulfil.  The struggle is real is a phrase that’s become so frequent from my daughter and her friend’s generation.  It’s a fitting phrase for those with chronic illness because the struggles we have are real.

I have been asked to write a blog post on puppy updates and advise to give other op parents.  I completely misunderstood but it’s a topic near and dear to my heart.  Check out Ranger’s new Squirrel watching pose.  We got rid of the bush so he has a better view for watching.

 

How have I been? 

I saw my rheumatologist last Thursday and I got the cortisone shots in my hips.  My follow-up kidney functions came back good but I have to get some more laboratory tests this week just to double-check.  Since the shots have kicked in I’ve had a bit of energy every day so I can get something done.  I saw my family doctor last week as well and everything thing I brought up, he said I needed to talk to my other doctors.  It was a pretty frustrating visit for me as I’m still waiting for a referral to the pain specialist.  I can’t get a change in my pain medications until I see that doctor and I’m still waiting for an appointment.  Waiting for a specialist is absolutely crazy.

 

What have I been doing?

I bought this French Wine box from the LCBO to see how their new home delivery was.  It was $12 and delivered by Canada Post.  I ordered on a Sunday night and had it by Tuesday mid-morning.  The Canada Post guys said that everyone has been saying how fast the shipping was.  Everything was well packed and labelled that it was breakable.  Because I was paying the delivery fee of $12, I grabbed a couple bottles of my favourite wines as well.

LCBO

The Discovery Box includes Les Dauphins Côtes Du Rhône Reserve Red 2014, Georges Duboeuf Beaujolais 2008, F Lurton Fumées Blanches Sauvignon Blanc Vdf 2010, a set of 2 Ceramic Ramekins, a Cheese Knife Block Set, a set of Ceramic Chalkboard Cheese Markers and the LCBO France-to-Go booklet.  The box also included an invitation to sample the newly released vintage on November 18th.

I’ve been getting some online Christmas present shopping done.  It’s pretty easy now that the kidlets are older.  My daughter asked for her Organic Chemistry book for Christmas, Umm okay then… That’s a first.  My son asked for clothes or a laptop he can actually type on it.

My hubby caught me watching some Christmas movies yesterday.  He commented how its only November but wondered if they had made me cry.  Yep, crying at Hallmark movies, the commercials even make me cry!  I did find that it made me feel more like Christmas is coming that it feels.  It is currently another sunny day and pretty mild for November and I’m enjoying the sun streaming in.  I’ve also found a tv series called The Librarians on Crave TV.  It has Noah Wyle, Rebbeca Ramon and John Laroquette and well it’s the adventures of the Librarians and their saving History and artefacts.  It’s quirky and silly but it’s a fun watch.  I love history and the premise of time travel and even better, in January season three will be airing.

OUT of Spoons

Fibromyalgia, what is it?

My fellow blogger friend, Ness from The Girl With Five Lads wrote a great blog post about what Fibromyalgia is. https://www.facebook.com/thegirlwiththefiveladsengland/posts/1816104628627260 

For me Fibromyalgia was an “oh that’s Fibromyalgia in an off-hand sort of way from my previous Rheumatologist explained the non-lupus pain.  The pressure points were like knife stabbing pains as the doctor pushed on them.  My joints hurt all the time but those pressure points were insane pain.  I’m taking Gabapentin in some pretty high doses but my doctor explained that because I can handle it that it can be increased.

I hope you enjoyed my update and my wandering out of hibernation of ignoring my blogging with mush brain.

Journey with me … mini2z


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