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
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
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
I want to start off by saying THANK YOU to everyone that has helped both with donations and also words of encouragement. The cards I have received in the mail and the messages in email, Facebook and here are so Heartwarming and mean the World to me! Here is the latest update ~ The results of my scan shows that shadows are in BOTH kidneys and they are about the size of a small child's fist. The silver lining is that they are believed to be CYSTS vs TUMORS for which I am Thankful. The Dr did say however that because of my compromised health, things can take a nasty turn at the drop of a hat so I will be closely monitored. One other thing that he was concerned with was my bladder since it was showing shadows also and the blood in my urine. Turns out I have some scarring from the botched surgery years ago when I got my tubes tied. Yes, a simple out patient procedure turned in to a nightmare when my bladder was sliced open. Like I needed yet one more thing to add to the list, right?? I ended up having a complete hysterectomy after all of that so they are not sure why there would be bleeding because it is obviously not from a "cycle". They performed a cystoscopy in a hospital setting and so far everything looks GREAT ... YAY!!! Now, again like with everything else, it's a wait and see attitude. Unfortunately with this late stage of my disease, ANYTHING can happen and change from one day to the next. I also had a new digital mammogram because of the lump under my armpit. Results should take a few days.
I want to say THANK YOU again because for the first time, I was able to pay my portion of all of the medical procedures at the time of service instead of asking to be billed and worrying about how I was going to pay it later. Just to let you know, there is a separate bank account just for your donations and they are only used to pay down the past and help pay for the current medical bills. Your generosity has been overwhelming and again THANK YOU for everything and for sharing my story with your friends. Hopefully soon they will be able to do more research on this disease so others don't have to go through this
Thank you so very, very much everyone for helping and for sharing my story. I have had so many people sending words of encouragement and Prayers as well as donations. You have no idea what it means to me. An update on my health .... new shadows have been found on my kidneys through a CT scan of my chest so a new scan was run to include all aspects of my chest and abdomen to get a clearer picture. We were hoping for kidney stones but of course it can never be that simple. Best case scenario it is cysts, worst case scenario is that the tumors have made it to my kidneys the way the Oncologist at Cedars Sinai warned us would happen.
I'm trying very hard to stay optimistic but it gets harder and harder to stay upbeat and positive. Through your generosity I have been able to pay off the debt that was owed to Palmdale Hospital (the one closest to us in cases of extreme emergencies and I also paid on the debt owed to the collection agency for AV hospital, the one farther away but the one Kaiser prefers I go to.
Your generosity has truly helped and I thank you for it but the creditors don't care about medical tests, nor prescriptions nor co-pays, etc so the time is just about here to sell my wedding rings. I thank you for sharing my story and at least I know that through me, others have become stronger advocates for their own health and THAT means so much to me. STAY STRONG and always know that you are LOVED!
I will update after I see the specialist on Aug 3rd
:( Feeling Worried/Scared, you name it for the first time in a long time. Primary called and said I need to do a second scan because they didn't like what they saw in my kidneys. Not sure if it is just cysts or tumors. It explains a lot of what I've been trying to describe to Wayne of the new pain that surfaced these last couple of days. It's amazing how your body tries to scream out to pay attention to it when your major organs start to be affected by disease.
This was AJ's status today on Facebook:
"When the pain becomes unbearable, Cinnamon Toast and hot tea are my friends to have something in my stomach to absorb the morphine."
I pray that she doesn't wake up to a nasty call from a bill collector. PLEASE, donate if you can! Small donations add up! Let's shoot for 100 $5 donations today! $5 - that's all. Thanks in advance, Lucy
This isn't AJ, This is Lucy. I'm the one who let AJ know about this online fundraising. She never would have done it on her own, but agreed that there comes a time when you have to ask for help, even if it is embarrassing. So here we are.
We had a wonderful spurt of activity when we started, but then nothing. I've been trying to figure out why, and all I can think of is that people think they have to donate a large sum. Gifts of ALL sizes are welcome! AJ's friend list is over 700 strong. If everyone donated just $10 - that would be $7000! Small gifts add up! We've had total strangers donate $50!
Last week, when AJ had to go to the ER, it broke my heart. All I could think of is the extra expense that would incur, and the extra stress that would bring. AJ has inspired us all, with her positive attitude in spite of all that life has dealt with. She's our 'No excuses' example to follow with all our heart.
Please, if you can spare $5 or $10, please consider donating today. Or more! Surprise her! (Do you know that 407 people have visited this site, yet just 15 have donated? I just KNOW in my heart that we can do better!)
Let's help Wayne and AJ KEEP their wedding rings! I honestly DO NOT BELIEVE that anyone should have to sell their wedding rings, to pay their medical bills! Please, please help. Let's swamp AJ with our love and support!
WOW, I have been getting such great messages of HOPE, of PRAYERS and ENCOURAGEMENT from so many people but most of all, I have heard from others that said my story has helped them to become better ADVOCATES for their health!! When my friend Lucy heard that I was going to sell my wedding rings to help pay the bills, she was kind enough to set this page up for me since I had never heard of it and was too embarrassed at my situation. Now, what matters so much to my HEART is that in a small way it's MY turn to help OTHERS! I may struggle with health issues and financial hardships now but for 5 years I was literally told I was crazy! For ME, that part is over because we have answers now no matter how dire. I pray for those that are still in the "What's wrong!?" stage of their health. When you KNOW that there is SOMETHING wrong and your Dr says that there isn't .... get a second, a third opinion. Don't let them bully you into dying like I did.
It's now been about a month since I had approximately 25 shots of Kenalog injections into my face to try to keep the tumors at bay. It seems to have really helped with the constant pain so I'm glad I chose to go ahead and try it. Beats yet ANOTHER surgery since the tumors just keep returning! Now it's off for round 3 of the Solu-Medrol steroid injection trying to keep the chest pain away. Being sick sucks and I hate all the constant tests, procedures, etc but it sure beats the alternative, right? Thank you for the support, the Prayers and the Love. I appreciate them ALL
Well, today is day 2 of steroid shots and bed rest, trying to avoid being admitted into the hospital. I sleep better in my own bed and at least this way I'm not being poked and prodded every couple of hours. Plus I don't have to worry about making the nurses nervous because they can't find my veins for the IV. Sigh .... all these years of steroids have really done a number on them. Thank you for reading my page and for keeping me in your thoughts and Prayers. Sending you all of my Love!
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!