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Living with Lupus- Oh hello fall we meet again

February 17, 2020 / by gabbie / Leave a Comment

 

 What is lupus +

lupus or SLE, the body’s immune system targets its own body tissues. Lupus nephritis happens when lupus involves the kidneys. In other words your immune system starts attacking them.

 

I wish saying living with Lupus was easy because it’s not. This year marks my 16th anniversary. And it has been a rollercoaster, to say the least, and it seems the older I get the everyday pain spot as I call it becomes the norm. I never have used self-pity to make myself feel better because that’s just not who I’m. I know others can’t handle the joint pain, the muscle pain, the never-ending feeling of being cold and dreading that fall and winter are coming soon.

It’s a daily fight I deal with. But as time has gone by I’ve gotten better at dealing with the idea that the lupus is here but am in control at times.Lupus for the better has made me  BETTER🙂 not that I wasnt before but like I said my outlook on life is NEVER TAKE IT FOR GRANTED! EVERYDAY IS A NEW DAY!

 

March 2004-

I started all this with knee pain and it seems this month February 2020 my knee is making it known that it knows it’s it hates this time of year. The side of my knee on the left side is a new spot. I swear if my knee could tell its own story to the whole Lupus thing. It would need a huge hug afterward. Yeah, I got diagnosed with an ACL tear last year. I told my doctor that my knee was being a butt to put it nicely and had to get an x-ray and BAM an ACL tear. I wasn’t sad but it made sense why it hurt sometimes when I walked a lot. To say I was relieved would be an understatement. Walking upstairs is a major pain in the ass and the same with some steps. I’m lucky that my parent’s house has about four. So walking into the house isn’t hard. AT times the pain gets really bad that you’re at the point of tears. It’s NEVER easy knowing you cant tell your immune system to cut it out. I call my knee names all the time. At this point, I have a love and hate relationship with my asshole of a knee. In case your wondering I have knee pain in both.

 Knee braces are my bandaids for my knees.

 

I have ventured into the natural remedies and I’ve yet to get anything with CBD or THC. I’m hoping to give  CBD gummies a try, I will go to my local dispensary. Thank you CALIFORNIA for making this possible! I’m taking  B12 to help with the brain fog.

 

 What is brain fog+

Is a symptom of other medical conditions. If you google what is brain fog ? You end up with a mix of this

sleep deprivation, poor nutritional habits, stress, depression, and dehydration.

 

Questions you might have.

 

Gabbie how do you deal with this compared to say 20-year-old Gabbie as too 30 something Gabbie?+

Good question. 20-year-old Gabbie’s life changed with than a good 2 1/2 months in May of 2004 I got diagnosed with the Lupus nephritis. I was on oral chemotherapy and yeah not fun. I had to drink a lot of water and just normal tap water was hell. I would start puking up water NOT FUN with the tap water it was just gross. My parents pretty much bought a lot of bottled water and while not great for the planet Gabbie needed water. I was told that if I didn’t drink enough water it could later become bladder cancer. NOT something you want to hear as a 20-year-old. I become a big fan of Crystal Geyser which is based here in California. Their Crystal Geyser 1 Gallon Water Bottle with handle or AKA to at least me the Juggy became my go-to water and not a bad deal for $.99. Nowadays I still do buy them and any of the following brands Aquafina and Dasani or SmartWater. I know what your thinking but why certain brands Sometimes I think my body remembers the  hell. I’d rather stick with what I know… if that makes sense. I drink filtered water at home but when I’m out I stick to any of these brands. The fall and winter are affecting my joints more. The cold makes everything hurt and it seems every month during the fall and winter months a new spot makes its self known. This becomes a hell, stress kicks in and I flare up meaning the lupus is more active than normal.

How bad is your lupus compared to other people out there+

Lupus is different for each lupie. There’s no set medicine for us.I have a moderate form of SLE BUT its stable.

I take a pill that helps with my body not hating on my kidneys. In other words, it’s an immunosuppressant .. it weakens my immune more. Yeah, major yikes it doesn’t help when I’m sick. It makes it worse. I also take a pill that is used for malaria but it helps with inflammation  BUT its side effect is messes up your eyesight over time. Yeah, not a fan of this one. I’ve been wearing nerd specs for 6 years now. I dig them. Every year and 2020 will be the last time I get a Reclast infusion what this does thanks to good old google ” used to treat or prevent osteoporosis caused by menopause, steroid use, or gonadal failure” So it repairs my bones. It’s not fun at all. The aftermath is hell. Like I said 2020 infusion will be my last. And I’m grateful for that.

Do you think your lupus will ever go into remission?

Lupus does what it wants. It’s not cancer as much as people might think it might be but it’s not. The medicine they give us helps us but mine is active every  24/7 so 365 days. I don’t think it will ever stop being active and while that might suck for family or friends to think about that BUT it’s my reality I’ve accepted it you know. Going back to

Lupus for the better has made me  BETTER🙂 not that I wasnt before but like I said my outlook on life is NEVER TAKE IT FOR GRANTED! EVERYDAY IS A NEW DAY!

Have people tried to get you to do things to help you say get better?

I’ve had people tell me that I should go gluten-free, go vegan and etc but I can’t a lot of my favorite things might be making the lupus worse but my diet if you want to call it that is mainly stay away from salt and sugar as much as I can eat less pork. This is what’s working for me. PLUS there’s not enough in the blankets in the world to make me ” feel” better.

Are you mad you got diagnosed with SLE?

You know I was for a few days after learning I had it BUT now I get mad at my body when the pains an asshole. I hate it. reason for that love and hate relationship with my asshole of a knee/s at times.BUT it’s just another chapter to my life that’s what it really is… Not many people like it and that’s fine.

What is the BEST medicine for 30 something Gabbie?

Reading, watching one of my favorite shows and talking to my favorite people and maybe stuffing my face 🙂  and doing a little gaming here and there.

 

 

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