Pam's Quest for Healing

July 24 2012

Time is flying by this summer!! I have been very busy at the gallery making jewelry & trying to get ready for shows this summer and coming this fall.  Pam's parent's have helped tremendously during this time under Pam's instruction, helping to build my booth tables and organize our lives so that we are able to manage this busy time with little disruption to Pam's daily med schedule. It has proven to be a big challenge fro Pam to keep her spirits up with everything going on and her inability to do much physically, but she is taking one moment at a time and has been able to tolerate the Antibiotics the entire month since our last visit to the Dr. in NY.  This is a huge accomplishment and we are even seeing a few symptoms dissipate a bit, unfortunately there are a few more to take their place, but any change is good at this time.


Yesterday Pam had her first disability appointment and things went well, she had a very patient and compassionate person working on her case, which has been so unlike every non-Lyme literate Doctor that she has seen over the past 4 years! There was of course, about 3" of doctors records that we supplied to them, along with what they will request they will be very busy with her case.  It will take about 3-4 months to get a determination and we were assured by the case worker that if she was denied that she would help her file an appeal immediately.  This has been one of the hardest parts of this whole journey to date, Pam not being able to paint and contribute to our business at all this year.  She struggled through the last 3 years while sick working as much as she could, but now not being able to accomplish even the simplest drawing is a heartbreaker for her to say the least. She is looking forward to this changing in her life and in the mean time we will do the best we can to keep upbeat and positive about her ability to get back to the easel!


In 2 weeks we will travel back to NY for another visit with Dr. Horowitz to have an evaluation of her progress and discuss additions to her protocol.  As we have been told so far, stay the course and steady as she goes, so that is what is happening.  


We have been so thankful for all of the support in the past and have truly felt as though we have dropped out ball in staying in touch with FB and this funding page so that we can keep moving to our goal as the medical bills still pile up.  The paper work can be staggering when dealing with hospitals, doctors and managing payments for the long list of supportive medications it takes to keep Pam healthy as possible during her treatment.  She is doing her part by drinking detox drinks made from the kale, celery, parsley, swiss chard the we are growing in our garden.  With all of us doing our part, Pam's parents, Pam and myself we are managing to get through our days.


We are looking forward to a visit from our Grandbaby Holden the weekend after next that should lift all of our spirits!!  He is 6 weeks old now and Pam has seen him twice on short visits to NH so that we might just be able to hold him, even if he was sleeping it was pure joy! Having Ashley, Casey and Holden here for a weekend will be amazing!! We get pictures frequently and are thankful for these as they make us feel as though neither of us is missing out too much.


For now thank you again for everyone's donations.  I have tasked Pam's mother with helping write her thank you notes, my daily life with the gallery working 8 days a week is taxing my energy, but if I can delegate a bit of the duties it will help a great deal. Thank you for your patience and continued support!!

Love to all and thanks for keeping us in your hearts and prayers...we need them every step of the way each and every day.

Anita


July 8, 2012

It has been a very busy time at home settling into the routine of working, preparing for shows and making sure that Pam is well taken care of, but then again I am so fortunate to have Pam's parents here to take care of her needs when I leave for work in the morning until I get home in the evening to cook dinner. We are managing well, even if things at the gallery are getting a bit busy with trying to do shows and work the gallery. 

We have had some wonderful help from special friends who are checking on me daily and offering to lend a hand so the gallery can be open on the weekends I am at shows.  I was lucky enough to have Pam join me the morning of the Maine Home & Design Show in Rockport last weekend.  She was able to make the trip up with me and spend an hour while I set up my jewelry.  It was such a nice trip and a wonderful opportunity for a change of venue for Pam.  It really lifted her spirits even if it was for a short time. Most days she is in her chair with short stints of trying to accomplish small chores and time to rest in between.  She is finding her limits and being kind to herself with getting rest each and every day.  Weekly line flushes and dressing changes are going well and every two weeks blood work in Brunswick.

As you can imagine all of the medical bills that are not covered by the insurance company are rolling in and we are managing to stay ahead of the curve as well as asking for special consideration in making payments on the larger bills.  This funding page has made so much possible for us and when we look to the future of this treatment which really has no real timeline we are thankful for everyone's donations and thoughtfulness.  

Pam is managing so well and I am so proud of her and thankful for her parents support, they are a great team and with some reinforcements here and there things are going as we have expected.  One day at a time and one moment at a time as well. Thank you and if you can please share with friends who might have a few extra $$'s to spend to help with Pam's medical expenses we would be so appreciative!!  We'll keep you posted..tomorrow is a big day, going to take a trip for Pam to apply for disability, something that she never thought would even be in her vocabulary, but must happen since painting and drawing is just not happening for her at all. When you can't make your living you need to do things that are difficult, she is a champ and will push through this! Thank you all once again!!

June 26, 2012

Had a wonderful whirlwind trip to NY to see the Doctor yesterday with what we think is good news.  After discussing symptom improvements and additional symptoms that have occurred since Pam began her IV treatment, the Dr. suggested to stay the course on the IV treatment, "not to rock the boat". She is to take is easy by not adding an additional treatments for the upcoming couple of weeks.  Last month she had 4 good days when she tallied up her good and bad days, that is very good for an IV patient.  Her bad days are difficult and we are going to try infusing her in the evening instead of the morning and see if her days might get better because of it, if she is able to sleep through the worst of it, there might be more tolerable days!  Something to look forward to!  Her goal would be to be able to paint or at least draw at some point so there is a little hope that she might be able to achieve this at some point sooner than later.  Please stay tuned for her progress and thank you again for sharing, we still need to reach our goal, yesterday's visit was a mere $700 dollars so you can see when this funding sight is so important.  Each and every penny is going to help with meds and visits that are not covered by insurance.  Back again to NY in 5 weeks for her follow up, in the mean time we are in constant contact with the office and Pam has her weekly line changes and blood work every 2 weeks.  We are hopeful that this Thursday's blood work will reveal an increase in her white blood cell count,something that is not of a large concern, but should it dip there could be in interruption in IV treatment!  Hoping for the best and wishing for the moon!!! Thanks everyone couldn't get through a day without your love and support!! Anita


June 21, 2012 The beginning of the day was full of a very painful start and a difficult reaction to the infusion.  Every morning once the Rocephin enters Pam's body the battle of the Lyme bugs begins. Increased symptoms and working through each moment is how Pam gets through her mornings.  Yesterday was no normal day, a day to make the trip to see our Grandbaby Holden who was born on June 10th, Pam's first trip to NH in months. The conversation began with " Hi I'm Grammy Pammy!" yesterday and a very big smile!  What a wonderful sight for her to hold him and see his beautiful, sweet face.

 It was a long ride and a slow beginning for the clear headed Pam that arrived in Portsmouth at 12pm, but she did it and was thrilled to hold our little adorable grandchild!  Pam's parents have taken a bit of time to take care of themselves and their appointments so we have some friends pitching in to spend time with Pam so that she is not alone during their time away. We will be taking Pam to see Dr. Horowitz on Monday in NY.  This will be her first follow up appointment since she began her IV treatment.  We are looking forward to his assessment and to see him in person.  The office and it's wonderful staff are always available and stay in touch with test results and progress updates.  Right now her White Blood Cell count in low, so she has to be careful and stay away from potential infectious areas..no public restrooms, supermarkets etc... same protocol for Baby Holden!  Until the immunities build up for both of them!  We will post an update after the appointment on Monday and want to thank you all again for the kindness and continued support and donations!!  

Anita

June 14, 2012

Over $6000 on this Fund page and over $2000 in personal checks in the P.O. Box...Thank You ALL....Every ONE of you...for your generosity, your kindness, your helping hand, your awareness of someone in need....Thank You for reaching into your own pocket and Giving to our Friend Pam, so she could get the medical treatment and supplies to help carry her to the next step in her Quest for Healing.  This amount is Amazing...it helps lessen the stress and anxiety when you are so sick and not able to work and make money and pay your own way.  

We started this page on May 18th almost one month ago. Out of sheer desperation for a Friend of ours that needed help in so many ways!  Financial Help seemed to be the most immediate need at the start of this.  However, I must say...as the weeks went on, the show of support, love, kind words and cyber hugs has been the biggest pay day of all.  Pam & Anita have be in awe of the overwhelming response from friends, family, aquanitances, dog lovers, people they don't know at all, friends of friends, souls linked by compassion for helping others in this time of need.  We are all enlightened by the Love and Awareness of so many people to reach out and help...in any way.

 

 Thank you to EVERYONE for YOUR Donations for Pam on her journey to a healthier life or at least...learning to live with Lyme.  Thank you for "Liking" this page and forwarding the message to your friends. Thank you for give Pam & Anita the HOPE, Love and encouragement to Carry On!!

KC & Mike Costello...Stephanie & Joe Netherwood.

Namaste.

 

 

June 8

This has been one long week!!!  Pam has been off of her treatment until this morning when we began her IV Rocephin again. It was a week of focusing on getting the body back on track and exercising patience as well.  Finally the digestive system cooperated and Pam was able to move her treatment forward. The reaction to the meds was about the same as last time.  1 Hour infusion and about 10 minutes into the treatment she feels the effect.  The upside is that at least she knows the antibiotics are doing their job, downside is that she feels bad.  It will take a few days of the build up to happen and we are hoping that her body will tolerate longer than 4 days this time.  We have many other medication protocols to add to the regime and need to get the IV treatments regulated first.

Thank you all of the support and kindness of every donation, and prayer,  positive thought, energy and for sharing of this page and the Facebook page as well.  We are beyond grateful for the help of our family, friends and complete strangers who have reached out to share their support, because of their spirit we will be able to pay for the  mounting medication bills.  Just the other day the insurance company refused to pay for the Zithromycin that Pam needs to add to her protocol.  The rate that they wanted to charge was $113 for 30 days.  Only 1 of the 4 oral Lyme protocol drugs among the many others that Pam takes daily.  Insurance will pay for several, but Anthem chooses to pay for some and not for others. This is a crazy broken system when a patient that is ill cannot get medication that they need to get healthy.  We will forge forward and focus on Pam's treatment and accept all of the well wishes each and every day.  Thank you all for your continued kindness!!

Anita


June 2

Pamela's journey for healing has begun.  Her first treatment of IV Rocephin was administered May 29th, then we have been administering at home every morning. She is currently on a holding pattern with the antibiotics for a few days.  It is a very unfortunate problem with strong IV Antibiotics, but sometimes the digestive system cannot handle the doses.  After yesterday morning's treatment she will take a break for a couple of days to allow her immune system to get back on track and her body a chance to adjust.  As the Dr. says, this is not a road race but a marathon of sorts, slow and steady like the turtle she is will get her to a place of healing.


Her days so far have been difficult with a few bright moments, she is getting amazing care by her parents during the day so I can be at the gallery.  I feel fortunate to have them available to be with her during this medically challenging time.  


As with any Picc line we have learned how to administer her meds and how to keep her detoxified in the process as well.  Her dietary restrictions are numerous and have been over the past 3 years, but now are as important as the medications she takes daily. No gluten,potatoes, sweet veggies, sugar, dairy, beef, pork, limited fish, no caffeine and the list goes on.  Good dietary habits help with healing so I prepare food as healthy as I can and stay within the guidelines.

We will keep you updated on her journey and please keep her in your hearts and prayers!

This wouldn't be possible had it not been for all or you!!

Anita

PS...have to total all the checks that have been mailed as well, but we are getting closer every day to our goal for Pam's Quest for Healing!


May30

A very big day for Pam yesterday!!  The Picc line was inserted by the amazing staff at Vassar Brothers Medical Center in New York. After 3 attempts of not being able to get the line in the left arm, her right arm was the best option.  She had her first Rocephin infusion and rested comfortably last night. She felt the energy of her Turtle tattoo would protect her!

There will be a bit of a learning curve on how much she will be able to do with the line in her right arm...she is going to have to be a good patient while she has the line, no lifting anything with that right arm that weights much, but nurse said she can still help with the dishes! Yay! We are off to the Dr. this morning for the follow up and another infusion.  She is tolerating the meds now, so we are moving forward with the support of her parents and all of you...our network of love and caring support!


I feel there most amazing support from all of you who have given words of encouragement and monetary donations each of which have been so helpful.  Now the task of keeping Pam in a place where she can tolerate the protocol in order to allow those Lyme Bugs die!!!  We are optimistic every step of the way and want to let you  know on a continuous basis how much we appreciate the kindness of you all!!

May 28

We are planning for our trip tomorrow and have made all the arrangements for travel to NY for Pam's Picc line, Jasmine care here at home and packing of all of the necessities it takes to travel with a Lyme patient.  For those with Lyme you know what I mean for those who don't it means lots of little boxes of supportive meds for every single day and good food to keep the body healthy.  This support system of donations has made this day possible.  Words just do not bring to justice the feeling that Pam and I have today.  Please stay tuned for the update pictures and words about our journey.  Once again the outpouring of kind words and every little donation is making a huge difference!  We are humbled by all of you!!!

Anita



May 23

The picture you see on this page is from a Lyme patient's 3 months of IV antibiotic treatment.  Pam's treatments are due to begin next week.  She will be on a very strict diet regime, one that she has been on for 3 years now...this time no cheating at all!  There will be additional oral antibiotics for the other bacterial infections that she contracted from her tick bites as well as mountains of supportive therapies to help her immune system withstand the strength of this treatment. She will visit an infusion therapist to have her dressing changed once a week.  We are currently fighting once again with the Primary Dr. and other venues to get her line serviced and up against numerous road blocks.  This path is difficult even if you are paying out of pocket!  Her treating Dr. in New York is her support and we will get everything in line so that she will be cared for, one way or another.  Thank you again for all of your support, love, donations and understanding.  

Please educate yourself, the tick population this spring is horrifying!! Protect yourself and your loved ones by doing daily tick checks, especially on your dogs and children who are most likely to be in the yard and exposed!!

With the thanks,

Anita


 WOW, you are all amazing people who are supporting a friend in need!  What a wonderful feeling it is to know that so many people are thinking of Pam and willing to donate their hard earned money to help her Quest for Healing.  This is an overwhelming feeling for both Pam and I and we want to be sure that everyone has a chance to really know what Pam has been and will be dealing with moving forward in the months to come.  

  If you have 10 minutes please take the time to check out this link. A trailer for the documentary Under our Skin, it is an effective way to learn some details of this awful disease and what it can do and why it is so hard to get treatment.  Doctors are divided, the one thing they can't ignore is the quantity of Lyme infected people is growing every day!  

  May is Lyme awareness month so please only 10 min and you can get a glimpse of the lives of Lyme patients and their struggle and their true quest and spirit to get better. Their families fight to get them proper treatment should not have to happen! 

  You will know that in donating to Pam you have donated your dollars to help try and stop the progression of her Lyme disease and symptoms so that she can get back to her love of painting and being a part of my life and the rest of her family.

Thank you are just two words, but the sentiment with which it is said is so heartfelt it goes far beyond!

Anita


May 18th, From KC our Angel:

So many of Pam's Friends are asking HOW THEY CAN HELP ...Well here it is. A page where you can donate whatever you feel comfortable with...please read our Quest for Healing:

Pam Creamer is a Good and Dear Friend of Mine: She is an Artist, she was at the Celebration of Fine Art for four years. Pam is one of the Good Guys, sweet, talented, kind and deserving.  She has had LYME Disease for 3 years now:.She is very sick, getting worse day by day because her immune system is so compromised.  I've attached a letter to explain what she has been doing in her Quest for answers and coverage for her medical bills.  The Health Insurance industry does not want to recognize LYME as a long term disease.  I don't care what you call it:She is sick, gravely ill.  She can go into a remission "“ IF she is able to get a PICC Line to her heart to get IV anti-biotics into her as soon as possible.  Today after 3 years and so many months of working with, fighting with and doing exactly as she has been instructed by Doctors  and insurance people:Pam has been denied the $2500 worth of medicine she needs to get started with her first injection.  This will be for 3 to 6 months, $2500 out of pocket EVERY MONTH.  She cannot work, cannot drive:..sold everything and needs HELP FROM HER FRIENDS, FAMILY:.FRIENDS of FRIENDS:..!

I'm ASKING as a FRIEND for your help.  Anything you can send will be Greatly Appreciated!  And:If You cannot help at this time, I understand.  But, as A FRIEND to Pam and Anita:I have to reach out and see if others can give. THANK YOU...So Very Much!

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Michael Costello 
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