The burning in my arm is almost gone

I kinda feel like an idiot about this now,

but after the needle came out of my portacath in my right arm, about 24 hours later the burning around it dramatically improved,

and now a couple days later the burning is almost completely gone…it will definitely take a few more days to completely heal, but it’s almost gone.

(I just feel like an idiot because I hate to waste people’s time, Dr. Kim was so nice, and taking the needle out as a solution to the burning seems so elementary, I probably should have thought of that myself by now after my years as a patient…)

Everything else in my body is a mess. I’m still coughing a lot, sometimes with phlegm I can actually spit out,

and lately I’ve developed weird chest pain/pressure, like a vaccum is sucking in my chest. I check my oxygen level, and that’s fine, but the feeling isn’t good. It started a few weeks ago, I’m not entirely sure, but I thought it was stress about the trip, now I know it’s not. It’s related to the coughing.

I’ve recently realized the couch I’ve been sleeping on for weeks is covered in mold.

It’s been smelling funny, I ignored it cuz I thought we were leaving, but I finally flipped the couch cushions over and it’s covered in mold. Cushions are going in the garbage and I’m getting a cot, but now I’m wondering if breathing in on a moldy couch for a few months could have caused this cough (?)

Between the moldy couch and my bad vaginal yeast infection (I’m about to finally start that ointment…), maybe what I’ve been coughing is a fungal infection (?)

My lips are still strangely chapped, ointment Dr. A gave me is actually an anti fungal ointment. I’m about to try it…

My jaw/inside of my lower mouth hurts and still feels slightly swollen and tender, ie the actino infection. I’m hoping, like Lyme, eventually, somehow, miraculously, it will just go away…

But the good news, I finally started a novel, lol…finally….I need a writing project right now, I’m really depressed about a lot of things. I’m usually an isolated person anyway but the pandemic is really starting to get to me…it must be so much harder for normal people…what did people do in previous generations to get through their pandemic, we have phones and zoom and Facebook and texting and it’s still really hard?

I’m still exhausted for overdoing it last week…my bones ache again and it hurts to walk…I need this week to rest ❤️

Thank you 😍.

Happy New Year 🙂 I hope this is a wonderful year for you 🙂

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15 year anniversary at Cedars

Today is the anniversary of the first time I ever set foot on Cedars soil.

Spending my 15 year anniversary getting a mammogram and breast ultrasound done lol. And I did some bloodwork in between Imaging studies.

#grateful

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Family bonding time at the hospital

Some families bond over family dinner, some families bond over skiing vacations, or trips to a museum,

and my son David Noah and I bond over waiting rooms for appointments or various medical procedures 🤪👍.

Today we each did some bloodwork, I set up an appointment to have my port evaluated at the Procedure center, then we saw the doctor briefly about a bubble in his arm after the blood draw,

(I’m very grateful he squeezed us in)

and now we’re waiting for an outpatient X-ray because Noah might have scoliosis 🤔.

This is an average week in our lives, a part of our lives that normal people don’t understand (unless someone has a chronic illness themself),

I’ve learned to accept it’s almost impossible for people to understand what it’s like, the grueling nature of living with a chronic illness. It’s time consuming and mentally and emotionally and financially draining.

I’m grateful for modern medicine because it allows us to enjoy some part of life, but it’s like trying to get through life with a concrete slab on your back…people with chronic illnesses can’t quite get as much done as normal people…

This is exactly why we moved to where we did, to be close to the hospital, not because it was cool or fancy or hip…to be close so at least the commute time is minimal when you’re spending a lot of time going back and forth…

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Episode of severe chills on Sept 3 at 5am, then my CRP shot back up to 89 on Sept 4

I hope you’re doing well. ❤️

I had an episode of severe chills around 5am on September 3rd that lasted an hour or two, it was severe. The worst episode of chills I’ve ever had, I couldn’t even get up to get some Tylenol.

The chills started about 2 hours after I flushed the port in my right arm [which is 2 years old?] after not flushing it for a week, and I dosed myself with Invanz. This could be a coincidence.

I’ve had a very bad cough the last couple of days, and I’ve been nauseous. The two days leading up before the chills, I was vomiting at night.

I haven’t had an episode of chills since the September 3rd at 5am episode, and I haven’t flushed my port either.

I’m going to start keep track of every time I flush or use my port for Invanz and my symptoms, even though I’m not convinced there’s a connection, Noah mentions it.

I’m really not sure what’s going on, I feel awful. I’ve had autoimmune problems for years and my CRP has been normal. Why do elevated now?

I’m trying to lay low and rest a lot, it seems I get a little bit better then I get sick again, but this the worst. My cough isn’t as bad today, but it was really bad yesterday after my episode of chills.

Thanks again for everything. I have a phone appointment scheduled on the September 10th. ❤️

If there is any special bloodwork I should do next week, please let me know, otherwise I’d do the usual again in a few days, CRP, Sed Rate (which also shot to 70, but it hasn’t been normal in weeks), CBC and Chem Panel.

I will contribute to rest and try to keep my stomach still. I’ve been living on a lot of popsicles and Gatorade the last few weeks 🤪🤢.

I hope you’re doing ok. I miss you.

Warmly,
Tara

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@Cedars during the pandemic

We just go round and round

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Numbers much better now — oxygen 97, pulse 80

I wonder if the Ig I did yesterday around noon helped…the last time my oxygen was low and my pulse was high, I did some Ig as well and within 24 hours my numbers were better, I wonder if it helping or if it’s a coincidence…

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My numbers are looking a little better

My numbers are looking a little better (oxygen 94, pulse 95) which is good. I’ve stopped vomiting and I was even able to hold down a piece of bread with some peanut butter on it.

I still feel like I’ve been hit by a bus and my joints all hurt, but I’m definitely heading in the right direction. I did 2 bottles of my medicine earlier today (8 grams), I’m not sure if that is helping or not.

We’ll see how the numbers look in the morning. Thanks again for everything ❤️

Love,
Tara 🙂

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I’ve never been so sick in my life :(

I hope you’re doing okay…I’ve never been so sick in my life before, and my oxygen level is 90 (normal is 95-100). Dr. Sherman said to rest and try to keep fluids down (I’ve been vomiting all day), he said even if it is Covid they can’t really do anything for me until my oxygen is 88, so as long as it stays above that, I should rest….

I’ve been feeling aweful the last couple of weeks, but today I can’t stop vomiting so I’m hoping that will stop soon…i was supposed to do my MRI today, I need to do that because I have to find out if I need that breast surgery sooner or if it can wait…

If this is Covid, I’ve only been to the grocery store and to a couple of doctor’s offices, probably got it from the medial offices…

When you feel this bad, it invokes a lot of soul searching for sure…no matter what happens, even if it is the end for me, please know how grateful I’ve been for helping to keep me on the planet, you and my small army of doctors and nurses, lol. Please watch out for Noah, I’m worried about him, he’s already very lonely and he’s been worried sick the last few days. He texts Dr. Sherman himself, lol, “I don’t understand why they’re not doing anything”, but sometimes the best thing to do is rest and hopefully ride it out…

I love you very much Mr. Joseph James Dante, Jr ❤️. Please take care of yourself. You’ve done so much for so many people, now is the time to make sure you’re well taken care of.

I love you. I’ll send you an update in a few days,

Tara ❤️💋

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This Turmeric pill is helping my joint pain

I decided to try Turmeric, just to try it, not for any particular reason,

and today I realized my joint pain — which had been getting so bad sometimes I could barely walk — has definitely been better the last couple of days.

It might just be a coincidence (?), but then I started reading about Turmeric and other people have said it helps their joint pain too.

So I’m gonna keeping trying it ❤️👍. The pain hasn’t gone away completely, but it’s not as crippling bad as it was a week ago…

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Me practicing getting suited up to go to the lab this week…

That’s the one thing about those of us with chronic health problems, there’s only so long we can go before we have to step back into a health care facility again…

I knew this day would come, so in addition to my N95 mask,

I have plastic goggles to protect my eyes (Noah told me viruses can enter the body through the eyes, so if you’re going to a high risk place it’s important to wear googles),

and then a plastic face shield…it’s not as good as a medical face shield, but I figure it’s better than nothing (?)

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