Have you ever felt stranded? Sick …Painfully so…But did not know who to call. Maybe too sick to figure it out.
This happens a lot to those of us with autoimmune disorders. I am seeing many doctors, each a specialist who oversees a section of my body. For me, I have a rheumatologist, an oncologist, an endocrinologist, an ENT Doc, an internist and a podiatrist. However, there is no one who looks at the total me.
This week I am in trouble. Things just are not working well enough. The protocols that are to be followed when I am in trouble are not working. What do you do when your painful issue does not fall into the neat little slot of a specialty? When you are plainly worried that all is going to hell? Who do you call? Unfortunately, not GHOSTBUSTERS.
Here’s what I did. Then I will tell you about my remedy for my next crisis of indecision.
It was decided through C-T scans and visits to my endocrinologist and an ENT Doc that the swollen lymph glands in the back of my head, my neck, my jaw and my face were due to my RA. Relief for me. I was thankful that I did not need to worry about doctors doing weird things to my head. But then what? My oncologist is worried about lymphoma (77x risk in severe RA). A nagging little worry. Just setting the stage here.
A few days ago my left side of my face started swelling. My jaw hurt. My face hurt as well as my ear. My face kept getting more swollen as well as more painful. I felt as if I should call the oncologist right away and demand a test for lymphoma.
However, I called my rheumatologist only to get the message no one was home.
Called my rheumatologist again. Thankfully someone answered. The solution was at hand. Thank God! I did not need to come right in for a lymphoma evaluation. Instead, I was given a prescription for a Medrol pack. I was told that it would solve my problem. I felt much better already. I had a solution, a plan of action. Seems obvious doesn’t it? It wasn’t at the time.
I needed help. I needed someone who saw the whole me. My next call was to Abby. She is a Palliative Nurse Practitioner. She was able to see me today. She will provide the supportive umbrella for my needs.
“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.”
“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work with a patient’s other doctors to provide an extra layer of support.”
“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”(Quote from brochure from Presbyterian Medical Group Palliative Care Centers.)
Abby suggested I take my Tramadol on a regular schedule with my other meds to keep my pain level under control. She said my GI system was stressed from all my meds and wrote a prescription for probiotics. She also said I still have much processing to work through.
This is perfect for me. Abby gave me her cell number. I now have a lifeline. I will see her again and I do have her number if I get in a jam. Lucky me. Definitely not alone. I feel much better.
Consider looking for a palliative care service to help you wade through the endless issues of a serious illness. I made the call. You can too.
Reblogged this on Lois Roelofs and commented:
If you’re not aware of Palliative Care nurses, here’s a wonderful example from a blogging friend of mine what they can do for you. The whole you.
I’m so sorry for your week, but so thankful you found palliative care. I’ve reblogged your post to help others who may not know of this wonderful “holistic” resource. Wishing you well!
Thank you, Lois
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Unfortunately, Palliative care is a well kept secret. It’s a new program that should be so helpful for folks with pain of chronic illness. And nurses play such an important roll. Thanks for speaking about this great service.
A well needed program!