Chronic Illness, Contentment

Rheumatologists, Rashes, and Relief

Another day, another doctor’s appointment.  Actually, I was very happy to go to this appointment.  I was referred by my new rheumatologist to dermatology.  I’ve wanted to get to the bottom of my rash problem for 7 years!

Over the last 7 years, I have been to the dermatologist twice.  One doctor thought the rash looked like a lupus rash.  The second doctor thought it looked like eczema.  Neither doctor performed a biopsy.  As I’ve since found out, rheumatologists completely ignore everything except results from a biopsy.  I’ve asked for this, but today was my first biopsy on a 7 year rash.

Relief

Getting to the truth in autoimmune disease diagnosis is unbelievably slow, frustrating, and cruel.  It’s cruel to make a person who is suffering, wait for years to get properly diagnosed and receive treatment.  Yes, I’ve been treated horribly when I’ve been ignored and neglected by doctors.  No one should have to lie on the bed or couch for years, wanting to be better.

Well, today I had a skin biopsy.  This was a simple cut on my back, with three stitches.  Such a simple little cut by a doctor, will finally bring black and white proof.  This proof will allow rheumatologists to know if my rash is caused by lupus or not.  So simple; and why did it take so long?

I have no idea why this took so many years, but I’m glad that it’s done.  I’m so relieved!  Whatever the results show, I don’t care.  I’m just glad to know the truth.  As far as I know, this will be the last test needed to get diagnosed.  My appointment for follow up isn’t until June.  I hope that the appointment can be moved up to a sooner date.

Prayer

Just as chronic illness is physically painful and exhausting, the mental and emotional pain is unbearable.  If you’re dealing with chronic illness you know what I mean, and I wish better days for you.  Hubby says that I handle it better than anyone he’s ever seen, and that’s a sweet thing to say.  But, I know deep down that I couldn’t take it without the grace of God.

Disclaimer: I’m not a medical expert.  This post contains only my experiences.  If you have a medical problem, please consult your personal physician.

@2018, copyright Lisa Ehrman

 

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2 Comments

  1. I hope you get your answers soon. I live with several chronic illnesses, and I was told for many years that it was all in “my head”. Sorry if I am overstepping my bounds. This is what I have learned along with some great advice I was given. Ask your all your doctors for a copy of your results. Keep them together in a file or binder. I am very lucky to have a proactive primary care physician. I always add her name on the ccs for ALL my tests. (In the past, she was sometimes is the only one that got back to me.) I write down questions for all my doctors before my visits. I carry a paper medication/allergy list with me at all times. The prescriber’s name, medication, amount, the reason I am getting that medication, and all related allergies. This helps me stay focused and organized, and it allows my doctors to see if there will be any interactions or allergies.With electronic records, my doctors are now able to give me a print out of a summary of what we discussed. I also go in with my ques. on paper and take a pen to write down some info. If it is a diagnosis appointment, I try to bring someone with me. Sometimes I just hear the diagnosis and the rest sounds like I am underwater. Have the doctor write down key points or print out key points. As a patient, at least in my state, they are legally required to give you a copy of your results/records/images from tests once you fill out a form, so I ask for the form frequently. It does not hurt that I have a close family member that is also a doctor. (The internet is sometimes not the best place to get answers.) I wish you the very best! 🙂 75% of the solution is having a diagnosis. I know from experience that it is vital to have all/most of your doctors on the same page- especially your primary care. Sorry, but yes, this is exactly like a full-time job. Sending you positive thoughts! 🙂 I found you on Friendship Friday Link Party. Please let me know how things turn out.
    Best,
    Christina

    1. xaoti

      Thank you!!!! You’ve got this doctor-thing down to a science 🙂 I appreciate all these wonderful tips. I do some of these, but I really need to get every single record and summary. I have a huge folder of records, but I know they’re not all there. It really is a full-time job! Thanks so much for taking the time to share all of this, because it’s so important 🙂 God bless!

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