*Annamaria's Angels helping with bills

 
Raised: $2,565.00
Goal: $45,000.00
 
 
 

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Annamaria Johnson

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Due to a delay in treatment, I am living with the late stage of a disease that could have been treated. I hate the fact that I have to ask for help, but my (incredible) husband had to le... more

 
 
 
 
 
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Updated posted by Annamaria Johnson 4 months ago

Thank you everyone for the warm notes and kind words that appear every day in my inbox. They mean the world to me and help keep my spirits up. Lately the disease seems to have a stronger foothold and some days feels like it's winning this battle but then I get your words of encouragement and I find the strength to fight harder than ever.

As of right now, my equilibrium is way off and I find myself falling every now and then but luckily no major damage. I'm doing well with Physical Therapy and we are keeping an eye on the mass under my left arm.

My Primary feels like she can no longer properly care for me as the disease progresses BUT I am so comfortable with her, with her honesty and her willingness to learn all she can about Sarcoid that I hate to switch to someone who may or may not have more "book smarts" with this disease. I don't follow any "normal" symptoms anyway and have been told I'm an anomaly so why travel more than an hour away, to a facility I'm not familiar with and see a Dr that doesn't know me well? We'll see how things go.

For now, I'm proud to say that I have managed to stay out of the hospital now for about 2 months so for that alone I am Thankful!! Your Prayers truly help and I want to again say THANK YOU for spreading my story around, for your kind words, well wishes and your generous donations. The constant co-pays for the hospital, Dr visits, medications, etc add up. I can't imagine how this would be without your kindness. THANK YOU!

Love to you all ~ AJ

 
 
 

Updated posted by Annamaria Johnson 5 months ago

Thank you everyone for the continued Prayers. The latest update ... I was back in the ER again so they upped the prednisone, again :( Unfortunately, this also started to bring on the weight to the tune of about 7 pounds but I'm working very hard to get them off (in addition the 60 still left to go LOL). The good days come and go but just the fact that I wake up every morning is a Blessing so I will take whatever life throws at me. The mass under my left arm is still being "investigated" because as I may have mentioned, NONE of my tumors have EVER shown up on an MRI, Ultrasound, PET Scan ... nothing ... EVER. I have to start physical therapy for the left shoulder because whatever the mass is, it's messing with that side so they hope PT will help. Little by little, the disease is manifesting itself in new and unusual ways so my primary thinks it's time she turns me over to a specialist. It means the 90 minute - 2 hour drive but if that is what it takes to keep the inevitable at bay ... I'll do whatever they say! I keep you all in my Prayers and as always, I urge you to make sure you stay strong and voice your concerns and to be your own health advocate! The life you save may very well be your own! Sending much Love ~ AJ

 
 
 

Updated posted by Annamaria Johnson 7 months ago

So here is the latest update .... Because of the lump under my left arm pit that we have been dealing with for a while now, I was told to have a mammogram. It was a digital one and I was told that it would take 7-10 business days to get results. I was called in 2 days. Seems that it came back abnormal with an unidentified mass in my left breast. GREAT ...!!! Sheese, just trying to catch a break here. Tomorrow it's yet another trip down to Panorama City Hospital for another mammogram followed by an ultra sound. Both of these will be done by the actual radiologist as opposed to a technician, hence the hospital rather than up here.

Thank you for always keeping me in your Prayers, I could really use them tomorrow. Thank you for sharing my story and for getting the word out about being your own health advocate.

Much Love to you all ~ AJ

 
 
 
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Created by Annamaria Johnson on May 16, 2013

Due to a delay in treatment, I am living with the late stage of a disease that could have been treated. I hate the fact that I have to ask for help, but my (incredible) husband had to leave his job years ago to take care of me, and the savings have nearly run out. Money has become a huge stress in my (our) life. There just isn't enough to pay for daily living expenses with the mounting medical bills. All the stress actually causes the symptoms to flare up even more. Nasty bill collectors calling at the crack of dawn is not the way anyone should have to start the day! PLEASE take a moment to read my story and SHARE with your friends. THANK YOU!

For 5 years I told my Dr that SOMETHING was wrong and she LITERALLY called me a hypochondriac. Even after 2 tumors were removed from my Maxillary Sinus in 2003 and that Dr saying I needed a chest CT to confirm his suspicions, my primary refused to order one.

A few months later, in Feb 2004, a trip to the urgent care resulted in an ambulance being called because we were told I was dying and the urgent care didn't know why! 3 weeks in the hospital and several scans, MRI's, ultra-sounds later .... we were told that they thought I had Non-Hodgeskins Lymphoma because of how enlarged my lymph nodes were and because of the blood results that were run.

They did a biopsy to confirm but it came back with something they were shocked to see. I had an advanced stage of SARCOIDOSIS. Normally it can be treated easily BUT because my primary did nothing for 5 years, the disease just ran rampant.

Now, 10 years later, I have been in the hospital too many times to count, I have had 6 surgeries to my face to remove tumors. (The last one was just April 22nd.) I have had to have my gall bladder removed, a COMPLETE hysterectomy because of a soft ball sized tumor, liver biopsies, spinal taps, etc, etc, etc.... The list of surgeries, biopsies, scans, tests, etc is endless.

The MRI of my brain shows lesions, the scans and ultra sound of my kidneys and liver also show lesions. My lungs are compromised and my heart shows the beginnings of CARDIAC SARCOID.

This disease is not very well known and we don't know how I got it, except that my Mom had Systemic Lupus and passed away in 2005, and this might be related. I am not following the text book symptoms and they have written an article about me in the ENT Medical Journal because I am an anomaly!

I am by nature a positive person. And I know that my positive attitude has gotten me through so far. But it's getting tough. We also take care of my precious grand daughter part time, and she brings me joy, even on days when I can barely get out of bed. Even the smallest gifts add up, so if you can spare anything, I'd really appreciate it!
 
 
 
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Recent Donations (45)

$2,565 raised by 45 people in 11 months.

$20.00

Lucy Lonning

4 months ago

 
 

Random act of kindness from one of my members - so I matched it! : )

 

$20.00

Amy Wernicki

5 months ago

 
 

$50.00

Karen Falk

5 months ago

 
 

$50.00

Elaine McDougal

5 months ago

 
 

$10.00

Anonymous

5 months ago

 

$20.00

Janice Tippett

5 months ago

 
 

$25.00

Jeannie Johnson

7 months ago

 
 

Many thoughts and prayers go out to you from SD!

 

$50.00

Sheila Hamlin

7 months ago

 
 

Wishing you better days and continued love and prayer

 

$200.00

Joannah Yu

8 months ago

 
 

I only saw this today....From the mouse, Shawn and me....

 

$10.00

Daniella Wilde

8 months ago

 
 

Here's to your health Annamaria

 

1-10 of 45 donations

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