Health & ME/CFS, Migraines

In Which I Explain and Complain a Lot

There have been a number of questions friends have been asking that haven’t gotten answered, so here goes, in no particular order:

  • Disability: I have appealed my Disability rejection to the highest level in Social Security, about two months ago. They can take a long, long, time to rule on things, apparently – up to 16 months!!! Not making me very happy to just hang in the wind, waiting. But not much I can do about it.
  • XMRV: Yes, I tested XMRV Positive.  What am I gonna do about it? For now, nothing. Because the science is in it’s infancy where this is concerned, and ARV’s (Anti-Retrovirals) are not simple meds to be messed with unless you absolutely have to mess with them. And, because we’re giving the Valcyte a chance right now – we want to be very sure what med causes what response in me. Recently, we got a piece of good news – the first study, ever, that not only confirmed XMRV exists (scientists are fighting about this), but that there is a definite link to CFS.  This comes courtesy the WPI, whom I’m asking all of you to vote for on Facebook as part of the Chase Community Giving program. They won $25,000 in the first round. Now they – the only organization working directly on Neuro-Immune Disease – are in the running for up to $500,000 in a grant in round two. If you haven’t voted for them yet, please do – and fast! Voting is only open one week. And just because you voted for them a couple weeks ago doesn’t mean you don’t need to vote again – it’s even more important that you vote in round 2 as there’s more money at stake. If a cure is gonna come, it’s gonna come from them! So, Go Vote!
  • Valcyte: As noted above, we’re giving this a chance to work, and it is definitely working. At least, I’m seeing cognitive improvement, and sometimes I think there’s a wee little bit less overwhelming exhaustion. Sometimes. But the cognitive improvement is what is expected to come first. It takes 3 – 6 months for the majority of the improvement, and I’ve now been on it 3 months. However, there is a problem: my platelet count is dropping and is low, but not low enough that I have to stop the Valcyte. Yet. I’m finding that very depressing. It’s as if I’ve been in a dark place a long time, and someone has opened the shades… I want to see more, interact more with life, with friends, to write, to be at least a little bit more ME. And I don’t want to give that up. But I will have to, if the platelets continue to drop. At which point we’ll let my body recover a bit, and then start on ARV’s.
  • Neurologist Appointment Report: My neurologist has really changed in her attitude toward me since I told her I was struggling to get on Disability. She not only volunteered to write a letter, she wrote one that night (about 2 months ago) and I was able to pick it up immediately. She seems much more interested in me as a patient, listens more, asks many more questions, spends more time examining me. She ordered a MRI of my cervical spine (my neck), the day I tore my rotator cuff. I put it off a few weeks while that healed up a little, then had it done. Basically, it says there’s some degenerative disc issues, arthritis, but nothing that would be an obvious cause of the migraines & chronic daily headaches. We’re increasing my Lyrica and hoping that might help, since not much else has helped.

Then there’s the complaining part of this post…

I’m tired. Really tired. We’ve gotten about 6″ of rain this week as band after band of storms have come through. This has made me have a migraine pretty much everyday this week. Including  today. I took a fioricet when I started seeing twinkling lights in my peripheral vision.

I’m cranky. Depressed. Frustrated. Part of it likely PMS – that’s likely also part of the migraine issue.

I’m worried about my platelets dropping and the possibility of having to stop the Valcyte. I don’t want to go back to where I was 3 months ago.

I’m frustrated with my house, the complete & total disastrous mess that really, only Rhia & I can deal with, since it’s our crap everywhere. I want to clean it. I just don’t feel like cleaning it. I have piles of clothes to sort through, stuff that doesn’t fit anymore, I’ve lost so much weight.

I’m frustrated with the slow healing of my shoulder. Twice I’ve intensified the hurt – once while camping, picking up something too heavy as we hurriedly threw stuff in the car in the rain. Then there was the “dog incident.” Someone came to the door, I had been asleep, Kasha was barking furiously, on my left, and without thinking I grabbed her collar & opened the door – and she lunged until I told her no. Kasha weighs117#. Or, she did until the Kleenex & cat litter eating incidents.

My neurologist was surprisingly concerned about my shoulder & the way my ortho blew me off. “How do they know how bad it is if they didn’t do an MRI?” she asked. Good question. If they are guessing based on how much I use it, are they factoring in the fact I’m on pain meds? And doing more than I would, otherwise? Dunno. Will ask my PCP in June – annual physical time.


Did I mention I’m cranky, depressed, frustrated, and courting a migraine again? That about sums it up.

1 thought on “In Which I Explain and Complain a Lot”

  1. From the Whittemore Peterson Institute Facebook page:

    A message from Annette Whittemore .

    “As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we’re asking for people to use any unused votes to help support the CAA. Many have already voted for both and we thank you. Let’s make medical research and patients a priority on this top 10 list for Chase.”

    Links for the two organisations are:

    (i) the CFIDS Association of America:

    (ii) the Whittemore Peterson Institute


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