Buoyed By Your Support...

It's Monday night and I'm preparing myself for tomorrow's outpatient port access. 


While I am not at all looking forward to another three days crashed out from the outing, I wanted to take some time to tell you that I will be buoyed by all of the emails, texts, and Facebook comments I received. Y'all know how to show some love! 


I am writing this post because I received such an overwhelming amount of support and I don't know how to thank you all enough. 


I had been feeling a bit 'wimpy' about my devastation over losing home care and then getting kicked in the stomach by the outpatient nursing care I received, but you all made me feel like I was not at all being wimpy!


You got angry for me. You wanted to spit and scream. You sent extra prayers. You cried for me. You offered to do anything to help. You offered to do many things to that nurse, including make *her* cry. You validated me. 


Two friends who are doctors themselves expressed their disappointment in the care I received and the loss of home care. 


Many of you have wondered how you can help and feel like you are not doing 'enough' for me. It is me that never feels that I am 'enough'. To you all, I say: You have gone above and beyond for me. You give me the gift of your time by reading my blog and responding. This is a huge gift, as I know how busy life is for you all. You remain patient, loyal and steadfast while I often go long periods without writing back. You show compassion, empathy, and support. You keep giving without expectation of receiving. You pray. A lot. You wait for me to reply to your needs without angering at my delays. 


This, my friends and family, sustains me more than you will ever know. It is true gift.  Through you, I feel God's presence in my life.


I am so humbled and so grateful.


Tomorrow I will take my phone with me so I can re-read your messages while I receive the Rocephin drip (30 minutes). I will take a comfy down pillow with to make the reclining chair more comfortable. I will wear my flannel PJs (It is still so cold here!). Oh and my TV, which I went almost two weeks without is FIXED! So, I have a little respite to look forward to in that department if my ANS isn't too freaked out.


As for a little update:


We have spent a great deal of time trying to find ways to re-institute home care. Yesterday I received an email from Dr. ANS that he would be willing to write a letter justifying home care. I felt my whole body breathe a sigh of relief. We also feel that Dr. Lyme will write a letter also. I'm working on getting my PCP on board.  The challenge is getting so many different doctors at so many different locations coordinated.


The biggest problem is trying to find a way to get all the little boxes checked in the exact way Medical Assistance wants them! (I'll try to explain the whole denial at some later point!)


And no worries, we definitely have plans to file a complaint about the nursing care during the first outpatient port access. It has just had to stay on the back burner while I work to try to get home care again.


Love, Hugs, Gratitude and Many Blessings,


If, as a spiritual advisor once told me, each time we think of someone it is like saying a little prayer for them, then you are all prayed for a LOT! I hear you when you tell me your little guy isn't eating well, your Grandpa is sick, your missing your mom, etc. and I send my thoughts to you constantly. Do you feel them? Are your ears burning? :)


Emily


Photo:  'Pollen-less' Cherry Blossom necklace from a new friend. She made this herself! I wear it every day as my 'little something pretty'. It matches all of my PJs. And it unites me with a fellow person struggling with chronic illness. Isn't it gorgeous? Her random act of kindness blew me away!

Outpatient Experiences...

Note:  I find it very difficult to explain why the chronic illness experience can be so physically and emotionally draining. I decided to share what has happened with the outpatient port experience because I think it is a good example of how much energy goes into constantly advocating for myself, managing my health, and recovering from medical procedures. The last three weeks I mostly went MIA because I didn't have an ounce of energy left.


I chose to have my first port de-access and re-access done at the same facility where I receive all of my local medical care.  This is not a small amount of care:  I have a PCP, a cardiologist, a neurologist, a gastroenterologist, a gynecologist, a nurse practitioner, a urologist, and many nurses. Before I started this blog in 2005, I spent seven years being treated poorly, disrespected, ignored, and dismissed.  And I've certainly been treated in those ways since the, but it's been rarely rather than regularly.

So, when I finally found a medical team both here and at locations outside of here I began to feel that the medical community could be a safe place.  I found a home at a local facility where I came to expect that I would be treated with respect, compassion, dignity and competence of care.  From the moment I enter the facility for an appointment until I leave, I'm treated well. All of the receptionists know me and greet me. The nurses do the same. The doctors take extra time with me. Sometimes I've had to go weekly for shots or other treatments.

The health care providers we work with when we are chronically ill have a tremendous influence on shaping our entire experience.

I arrived at the facility for my first outpatient port access knowing that I had had bad experiences there in 2005 when I was going regularly for IV saline after my gallbladder surgery, but I hoped that the changes I've seen in the entire practice would permeate the infusion center also.

Not so.

The care was everything I expect 'care' not to be.

Upon arrival, the nurse called me back. Mom pushed The Rolls through the door to accompany me.  The nurse snapped, quite rudely: "You cannot go back with her. I have other patients back there. It's a HIPPA violation for you to go back there."

A HIPPA violation? What a load of bologna! That was an outright lie. Not a good start. Loved ones have always accompanied me, even when other patients are present.

As soon as we got back to the infusion room, I asked if the chairs reclined.  I explained that I had a lot of difficulty sitting or standing for any length of time and really needed to recline while she de-accessed and re-accessed the port.

The nurse snapped at me, informing me that she always accesses her patients ports while they are in their chairs.  It would take her longer to get me into the recliner and get me set up than it would for her to just access my port while I was sitting up. It would only take her five minutes.

I know it does not only take five minutes to do this procedure!

When we are exhausted and vulnerable how do we continue to ask for what we need? What do we do when we are in a position of no power and cannot just get up and walk away?  What do we do when our needs are so clearly ignored and dismissed? Should I have kept asking? Should I have fainted for her? I think that she really thought I was just being 'dramatic' to ask to lie down or recline.

During the de-accessing and re-accessing, she not only continued to be rude, but she was also unsterile, which terrified me.  I watched her touch me without having washed her hands. I watched her use a dribble of anti-bacterial solution without actually rubbing it into her hands. I watched her then touch the fingers of her gloves with her unsterile fingers.  She never once washed her hands or rubbed a decent amount of anti-bacterial solution on them. She only used it that one time.

I should probably also note that she was wearing sandals. With bare feet. All of her toes and all of her back foot were in the open.  I am quite sure this is an OSHA violation.

When I got dressed that morning I had been unable to find a button down or V-neck shirt. I figured I would just take my shirt off (this is what I do normally if I don't have on button down PJs). Instead she insisted that I hold (yank), the collar down while she worked at the port site. This meant that my shirt was often in the area that should have been a sterile field.  Despite my offers to simply take my shirt off, I was told that is not the way she does things. Then she informed me that I 'should have worn a V-neck shirt'. Yes, I said, but I did not have one.

Because she had struggled to put the dressing over the needle (my shirt was in the way), I arrived home to find that the dressing did not even cover the accessed port.  And she had not even checked to make sure before I left. Air was seeping in.  Thankfully we had extra dressing covers at home, which we placed over the poorly covered needle.

I watched the clock ticking as I began to feel sicker and sicker. She left me to attend to another patient--take her vitals, set her up for her next appointment, send her on her way.

Because we were going to be away for doctors appointments on one of the days I was scheduled to get my port de-accessed and re-accessed, I asked how we might approach scheduling. It is very important not to have the same needle in for more than a week, for risk of infection.

We altered the schedule to different days, but they were at times that would be even more difficult for me energy-wise. I asked if we would be able to find times that would mesh better with my 'functioning' times of the day. She yelled at me that it wasn't her fault that I couldn't come on Tuesday those weeks, and I would just have to deal with the times she had.

As the appointment ended, I looked at the clock. Twenty-five minutes I had been sitting upright. (This was after having seen my PCP right before that).

I calmly said to the nurse: "That was too long or me to sit upright and I'm feeling really, really sick now.  Twenty-five minutes is just too long. In the future, we need to work out a way that I will be reclining when I am here."

By this point I was already almost in tears from feeling so sick.

She turned to me and yelled. And yes, I mean yelled. "It's not my fault you were sitting up so long. It's not my fault it took more than five minutes. It's your fault because you had to reschedule your appointment times."

I started to cry. Again, I calmly said: "I don't need you to yell at me. I just need you to say you're sorry that I was sitting up too long and we will make sure that it doesn't happen like that next time."

She just glared at me, said in a flippant manner that she was sorry, and wheeled my sobbing self out into the waiting room, past several nurses, doctors and other patients. Perhaps asking me if I needed a minute before going out into the waiting room would have been a good idea?

I ended up at home curled in a ball sobbing on the sofa, my dad holding me, his own tears sliding down his cheeks. My mom too, cried that day.

As a consequence of my ANS working so hard to keep me upright for such a long time and all of that STRESS, I ended up with flattened for the rest of the day (and week), with major tachycardia and other autonomic symptoms.

I've been getting my port de-accessed and re-accessed weekly for six months now. I know what a sterile  field should be like. I know what the dressing should look like.

Beyond that, I know that I have a right to be treated with respect, compassion, kindness, and dignity.  I do not exaggerate when I say that this nurse yelled at me, rolled her eyes at me, and showed complete disrespect. She never even asked me why I had a port or what was going on with me.  It was such a stark contrast to every other experience I have had at this facility.

It took me a very long time to find good medical care. And a very long time to believe that I deserved such care.

What made this experience so traumatic was that I had finally, after all of these years, started to feel safe. I had started to feel especially safe at this medical facility. Suddenly I had been taken back to some of the worst days of my life, when no one knew what to do for me and no one treated me with respect.

I felt my entire body trying to protect itself from feeling unsafe.  My shoulders and chest hunched forward and tightened. I wanted to be 'tough' and brush off the experience, but I couldn't. It brought back so many bad memories and opened so many old wounds.

It is going to take me a while to start feeling safe again, especially when it comes to my port.  I spent a lot of time praying that I did not leave with an infection.

I have since switched facilities for my port access.  I received excellent care both in kindness and competence. However, I had a 30 minute wait (sitting up) to even check in. I was there for over 2.5 hours. I had to do a lot of 'micromanaging' because it was my first time there--making sure the blood work orders were correct and being sent to my PCP, that the Rocephin dose was correct (it was not), etc.  Because this facility is not affiliated with the place I go for my other medical care, the communication leaves a bit to be desired.  After 2 1/2 hours of being out, I needed this entire past week to recover again. (Note: Even when I'm doing 'well' we don't go out for that long!)

The biggest difference between me 12 years ago when I first got sick and me now is that I am strong enough to say that the care I received was unacceptable, that I deserve to be treated better, and that I deserve to feel safe. I refuse to put myself into a situation again in which I feel unsafe.

I'm so not looking forward to Tuesday!

Blessings,

Emily
Photo:  A crappy unsterile port access and dressing.

Missing Home Care

I've been mostly silent on my blog the past few weeks. It is difficult to know what to say.  And since losing home care, I have had little energy for anything but absolute survival.  Any energy I do have (and even energy I don't have) has gone towards trying to take care of medical 'stuff'.  There hasn't been much 'resting and healing' going on here, to say the least!  

In an effort to not be a 'drama queen' though, I have also hesitated to blog.  I emailed a friend that things had been a 'bit overwhelming here'.  Upon reading that she said, "That was the understatement of the year." So the truth is that I feel like it has been pouring here! Even my new TV died in the midst of everything!

I really, really miss home care. To say I feel devastated over the loss of home care would not be an understatement.

I loved my nurses. I felt safe. It kept me in my own home away from other germs.  I could stay in bed and lie down while they were here. I had the same nurse every week (either Jess or Monica), so I never had to use energy making sure they had the right orders for blood work or the right amount of Rocephin. They knew exactly how to place my port needle, pigtail and dressing so that it worked best for me. They were clean and sterile. We got to know each other and had fun chatting each week.  The same person saw me every week, so they were able to really notice any changes in how I was doing or how my port looked. The nurses were usually here about 45 minutes, which left me with a least part of my day to still do a little email or watch TV.

On the day that I had home care each week, Mom got a day 'off' from giving my infusion.  Now, someone has to take me on Tuesdays (and this has been no small ordeal so far).  My first outpatient port experience was one of the most traumatic medical experiences I have had in several years. My second, while it went much more smoothly, still took 2.5 hours.

I am grateful for two things: 

1. I DID get one more month of Rocephin.  At this point I think we will only know if it has been approved on a monthly basis. So we will just take it one month at a time.

2. The fact that I can get port access at all. 

And while I am grateful I'm getting my port accessed weekly, I've been on the verge of tears almost every day since losing home care.  Where is the patient in the decision to deny me home care? Where is the consideration of my quality of life?

I know that it is not more cost-effective for me to go to a facility rather than have a nurse come to my home. And it only takes more away from my parents time and energy.  I qualify for home care on every level--homebound other than for medical appointments, use a wheelchair, do not drive, etc. I literally cannot think of one advantage that outpatient port access has over home care--not for myself, not for the doctors and nurses involved, and not for the insurance company.

What has happened both weeks I've left the house for port access?  

I've ended up sick in bed the rest of the day with extreme ANS symptoms.  I've been too sick to do anything but turn on NPR and lie curled up in a ball.  On the following day, I've ended up on the sofa too exhausted to do anything but sleep for the entire afternoon.  This week, I also spent all of Friday afternoon in bed. 

I've been completely emotionally and physically drained. I have been waiting for my sadness over losing home care to dissipate but it has, in some ways, intensified as I seen the toll losing it is having on my physical and emotional well-being.

What little quality of life I did have and what little energy I did have to maintain some independence or engage in activities I enjoy has been greatly reduced by the loss of home care. I realize that it is my 'full time job' to focus on treatment, but I don't think this should mean it is made more difficult than it needs to be. And I don't think I should be in a position that makes me even sicker than I need to be when there are other options.  

We are going to continue looking into ways to get home care covered, but I'm not sure that we will have success. Still, we're going to give it our best because the outpatient experiences have taken away so much from my quality of life. One concern is that if I fight the home care denial, will insurance suddenly stop covering the Rocephin? Or are the decisions made independent of one another? I have been trying to make phone calls to get such answers, and as much as I am grateful for government health insurance, dealing with MA can be a challenge!

Illness is all-consuming enough. If we have ways to make the experience easier and enrich a patient's quality of life, we need to do that. I know it is not in any way helpful for the healing process for me to end up sick in bed for 2-3 days from each outing. My spirit is much stronger and my quality of life much better when I can get out for an evening ride in The Rolls, get a bath, watch Dancing with the Stars, listen to a book on CD, and be able to nurture relationships with others.

It has taken me a while since losing home care to really understand why I have been grieving its loss so much.  I really feel that when I lost home care the balance between treatment being tolerable and intolerable tipped towards intolerable again.  I had just begun to find a way to make treatment tolerable again.  The medications have to make me sick to work and to kick some serious Lyme ass, but the port access doesn't need to.  

If it was just a short term glitch in things, I think I would be much calmer. But I have several more months of treatment left.  The thought of doing this week after week seems dreadful!

Today is Saturday. My port access was on Tuesday. I'm finally back to baseline and it feels good. I have been able to create satisfaction in my life today by blogging, enjoying dinner with mom, and being able to go out in The Rolls for a short stroll. Just the thought of starting the process of crashing out again this coming Tuesday makes my stomach flip.

Blessings,

Emily

Photo:  My home care nurse, Jess.

Happy Birthday 65th Birthday Mom!

Here is Mom with her friends, Pam and Norm, whom we have known for 30 years!  Pam and Norm came over for lunch on Friday to celebrate Mom's birthday. It was super low-key and the first company we have had in a very long time.  I left after lunch to go back to bed, and left the 'adult's to chat.

Yup, I'm wearing my PJs in this picture. But this is our reality right now, and I wasn't going to miss taking a picture with Mom to mark her big milestone!

Love this picture of Pam and Norm!

Mom took off of work on Friday, so we had the whole weekend together to celebrate her birthday and Mother's Day. It has been a crazy stressful few weeks, and we had a completely low-key no-health crisis relaxed weekend. It was just what we both needed.

It started off with this lovely lunch.

Will try to blog more soon.  In the meantime...

Happy 65th to my Fantabulous Mom!

and 

Happy Mother's Day to her too!

Blessings,

Emily

Photos:  Mom, Norm, Pam; me and Mom; Norm and Pam

Happy 'Gotcha Day' Asher Noam!

Asher (Hebrew):  Lucky, Blessed, Happy

Noam (Hebrew): Sweet Friend

Eight years ago today, on May 6, 2002, our lives became a lot more crazy. And a lot richer.

Happy 'Gotcha Day' to our dear Asher!

This is a set of photos from the part of his puppyhood spent with his foster mom, Jean, and Wheaten sister, Zoe. (Asher is on the left.)

Here he is with his foster mom, Jean, to whom we continue to have incredible gratitude for helping to save Asher's life and bring him into ours. She worked closely with the mommy of our other Wheaten, Winnie, to make the adoption happen.

It is still hard to believe that at eight months of age someone surrendered this little guy.  Jean nurtured him and loved him until we rescued him at 10 months of age.  In the meantime, we all changed his name! His name was Sturgis (Yuck!) when he was surrendered. Then, at Jean's it was Murphy. And when he came to me, I knew his name would be Asher.

When we look at these photos of Asher at eight months of age, we smile because all of his mannerisms are still the same: The way he sits and waits at the door, the way he finds a place to lie under chairs in order to get the shade, the way he runs, the way he walks, the way he waits for a treat.  

He probably spends more time plunked down under a chair (as he is in the photo above) now that he is almost nine than he did at eight months of age, but for the most part he still acts a lot like that same puppy we brought home eight years ago today.  We are constantly asked: Is that a puppy? 

When we brought Asher into our lives, I was very, very sick.  We had a couple of these very pictures printed on a little piece of paper. I would lie in bed and look at the photos waiting for this new little light to come into my life. I spent hours thinking about names.

Mom took a huge leap of faith to bring another dog into our home in the midst what was already going on with my health.

Yes, we have had our challenges with Asher over the years.  And sometimes it has been really tough.

But at the end of the day, it is always him that makes us smile or laugh.  Some days he is the very thing that keeps us from going through a day without a laugh or a smile.  

 I'm with Asher 24 hours a day.  Many days I snuggle up to him and say: I don't know how I could have gotten through these years without you.

So, Happy Gotcha Day to our Sweet Friend (who is sound asleep and snoring next to me on the bed). I hope we get to celebrate a LOT more of these days together!

Blessings,

Emily

Photos:  Asher during his time with Jean in 2002.