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.
Photo: My home care nurse, Jess.