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

Posted in Uncategorized | Leave a comment

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…

Posted in Uncategorized | Leave a comment

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

Posted in Uncategorized | Leave a comment

@Cedars during the pandemic

We just go round and round

Posted in Uncategorized | Leave a comment

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…

Posted in Uncategorized | Leave a comment

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 🙂

Posted in Uncategorized | Leave a comment

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 ❤️💋

Posted in Uncategorized | Leave a comment

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…

Posted in Uncategorized | Leave a comment

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 (?)

Posted in Uncategorized | Leave a comment

Strange bruises with the severe pain in my left hand


Download Attachment

Available until Jun 10, 2020

Yesterday the joints in my hand were hurting really badly, but today you can actually see physical bruises where the joints hurt really bad.

My joints hurt all over my body, especially in my hands and feet. Every time I take a step it feels like I’m walking on knives. It seems to be worse in the morning when I first wake up, but it’s bad all the time.

But this pinky finger joint pain is excruciating, and now I have a bruise. It’s weird how the pain started first, then the bruise appeared.

My joint pain has been getting worse and worse over the last week or two…if I had Covid at the end of February (which I’m pretty convinced I did), could that be causing all the joint pain I’m having now?

I’ve had joint pain throughout my life, mostly my knees, but nothing like this…this pain is almost excruciating at times…

Do I need to go to the ER? I feel like something is horribly wrong…I’ve never experienced anything like this before…

***

The video from today, showing the bruise in both the main joint of the pinky to my hand, and the joint in the middle of my pinky:

Click to DownloadIMG_0451.MOV
0 bytes

This is the video I sent you yesterday, when the pain was severe but I don’t think the bruise was very noticeable:

Click to DownloadVideo.mov
0 bytes

Posted in Uncategorized | Leave a comment