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Thursday, March 1, 2012

Back to the Rheumatologist

Of course Shane and I had an appointment with a Neurologist who specializes in Cancer patients last week. I'm pretty sure they removed his sense of humor somewhere along the the way...must be part of the "specialty"...Anyway asked me to do a bunch of things like walk a straight line (drunk!)...Repeat three words (totally forgot them after he said them).  I especially liked when he continually reminded me that I had a "Brain Injury"...I REALLY wanted to ask for a Handicapped Car Tag, but I chickened out....

When I finally got to talk I told about the pain all over my body - back, legs, arms, hips - everywhere...

Wait for it.....He reminded me that I had a.........BRAIN INJURY..... and he gave me a paper on Leg and Back Stretches...Now if I knew Origami, I would have turned that paper into a sword and cut off his P#N!$, but instead, I smiled and said, "Thank You, I'm certain this will be helpful."

So the pain continues to get worse - like Shane has to help me out of bed, worse...but I go away with a few friends and my two sisters just to a house here in Baton Rouge last weekend...on Saturday I take a shower and I get the "a-ha" moment...."Erythema Nodosum" is back...I know you are thinking I make this stuff up, but I really don't...If you check the post here (believe it or not it was just in January), I was diagnosed with "EN".  Naturally the Rheumatologist said it was probably a "one time" thing and I said "she drinks the Koolaid"....who won that one???

But I guess with Viral Meningitis and a Seizure in the way, EN slipped by mind.  But my nurse friend told me to call the Rheumatologist and make sure I could take the EN drugs since I've added so many new drugs to my diet.  It happened to be my doctor on call and she seemed very concerned and wanted me to come in right away for a lab work.  Lab work?  Like, are they related?  Could the meningitis have been prevented?  I'm trying to be calm asking these questions but I'm a little hysterical and crying....I'm sure she's wishing she wasn't on call....

So the appointment was on Tuesday and we go back on the 6th for the results, but it just hit me today that I could have a new career - since clearly a BRAIN injury and tax work don't mix.  Tuesday to Thursday - that's how long it took for me to really understand what the Rheumatologist was talking about - but had she used this example in the office, I would have known right away.  So there, I could come up with easy to understand methods to explain medical topics - done!  new career.....

oh, back to the topic....at first, I just had a white cake (EN back in December).  All the blood tests in the world were only going to show it as a white cake, but then you cut it into a million thin layers and put chocolate icing in between each layer and you pour chocolate icing over the entire thing and then you have Chocolate Doberge' (aka Heather's birthday cake).




So the doctor says when we put two flairs of EN with Viral Meningitis together with a whole bunch of other things she wrote down, we could have an Auto-Immune Disease.  She didn't speculate which one.  We did this in January, but now we have a few more cards stacked against us, so we'll just wait and see...again.

After cancer I started seeing a therapist who specializes in illness.  Last week I walked in, picked up the box of Kleenex and said, "I'm Done".  I just don't know what I will wake up to tomorrow...and the best thing she could tell me, and now I probably say it 200 times a day is, "At least it's me and not my children".  It doesn't make the aches and pains go away, but somehow it puts an end to the pity party real quickly.

6 comments:

Paula D said...

Oh Heather... I do think you missed your career target... you are a marvelous writer who chooses the perfect words to make everyone who reads your blog smile or even laugh out loud (to the point of tears)! I can so totally envision you with your paper sword as if I were sitting in the room with you! Continue fighting with your spunk my friend... you are an inspiration to all who know & love you :)

Ali said...

I agree with Paula. Your writing style is riveting. You are such an inspiration to all who know you and you would be a beacon of hope to others fighting illness.

Kathleen Loughran said...

I agree with Paula. You do have a way with your words.

Wow, when you shared what your therapist said I felt like I was punched in the stomach. It is difficult to watch you struggle with all of this. To watch if you had to go through this with your girls would be downright torture.

Hugs

Anonymous said...

I totally agree....you need to get these writings into chapter form and find a good agent/attorney and get this whole experience published. Your ability to smile through the pain and tears constantly inspires me, and many others. Go for it, Heather! I am praying things get better and staty better for you. Big Hugs. XOXO Susan

Kristen said...

You do have a book here. No doubt about it. But for those of us who know and love you ... oh sweetie, my heart just breaks for you. Damn, it's just so unfair. But ... I know you can do this and I know you will do this because you have shown yourself to be one of the strongest and most determined people I know. xoxo

Bill Cook said...

Dearest, Heather... I have been watching this all unfold in your life and remained on the sidelines really unsure of what to say or do. And today after reading your post, I realised that was cowardly. If you could find words after the hell you have endured, then I could surely say what has been on my mind: you are the strong person we all wish we were and that at times like this, life just seems patently unfair! I know it is cliche, but thank you for being you!!!!!

You continue to fight with grace, humour, courage and most importantly honesty. Please know that you are in my prayers and thought... daily! You are deservedly loved and cherished!

Love,

Bill