#124 - Multiple Sclerosis Scare - Part 2

My friend, Karyl, suggested that I go ahead and blog the following e-mail that I had sent to her and another friend:

"No more MS scare news.I had been really upset and Jerry finally figured out what was bothering me yesterday.

He has so much on his shoulders already, I did not tell him how shook up I was from the rheumy appointment.

Anyway... he was there with me and heard things different than I did.I have to go to an ears, nose, throat specialist first. There is a mass in both sinuses (probably cysts) and that has to be taken care of pronto.

Then...we will switch over to the new neurologist who specializes in MS. The P.A. was not stating that I may have MS. Jerry had told her how badly the other neurologist was treating me and she suggested switching over to this fellow.

I heard MS and heard nothing else.

So I need to revise my blog. I thought about deleting the entry, it was horribly melodramatic in retrospect...

but, it's real. This is still what we go through...

so I need to just write about how I misunderstood and put that in the context of the emotional roller coaster we live with from all the specialist shuffling around."

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It's the truth. I over-reacted to hearing the words multiple sclerosis during an office visit.

And I felt really embarrassed after I had posted the blog entry about my very real initial reaction.

I have been writing about this journey with lupus for three and a half years now...

and I try to keep it real.

So I was really, really scared, I wrote about that, and learned a few days later that I had flipped out over two words. I heard the words out of context.

This alone might encourage some of you to always bring a trusted companion to your physician appointments. If I had not had my husband with me...

I would probably still be in panic mode.

And for those of us who have been living with lupus for awhile now...

I guess this goes to show that living with the unpredictability of this disease is not always easy.

Now for the update...

I have not been doing well at all. My little guy has been on a long vacation, we had a family celebration recently, and the usual kids runnning through the house visit that goes with having your little boy on vacation.

This time around, I went through the vacation without respite care...

not something I would recommend for parents with lupus and young children.

So, I am on bed to couch rest, back with the migraines, and waiting to see an ENT this Friday.

I have been too ill to paint Winga's World and I am slowly, slowly getting back up to speed with writing.

Hubby and I are both concerned that I am going to need surgery...

but, I have already died a million little deaths over panicking about bridges I have not crossed...

or bridges I may never cross.

So, with all the emotional upset I created for myself in the past few weeks...

I am back to remembering how I must live...

one moment at a time.

For all of you who have sent me loving support, kind messages and e-mails...

I express my gratitude. I have tried to make sure I responded to everyone, but if I have missed the mark...

please be patient...

I will make sure you hear from me soon.

Today's entry is not a bid for support, or sympathy, or anything like that.

Just sharing the journey and offering others an opportunity to do likewise.

If you have a similar experience to share, feel free to post it in comments...

or post in your own blog and provide us with a link.