June: Tumultuous Times

Life with CFS/FMS/chronic Lyme and other Neuro-Immune Diseases tends to eventually become incredibly boring, as your health declines steadily, more problems erupt, and you find yourself confined more and more often to bed, isolated, in pain, sick & tired.  Memories fade, the months become years, and pass in a haze of misery.

But sometimes, things happen that interrupt the boredom, and they often aren’t good things. The last few weeks have been tumultuous times for me, filled with drama, trauma, and stress, but also filled with thankfulness and delight. The ups and downs have been quite the change from the quiet life of the chronically ill. Some of these I’ve already written a little about:

• My shoulder pain has continued. A cortisone shot triggered a massive candida (yeast) flare, and  it was quite nasty to deal with. But it did help the pain… for a while.
• I finally got an MRI done for the shoulder injury, and anxiously awaited the results, fearing a SLAP tear.
• As June progressed, I faced the 2nd anniversary of my beloved canine companion’s passing.

Then there are the things I haven’t yet touched upon:

The Valcyte continues to help, increasing my cognitive functioning somewhat, making me more alert & aware. Physically, it’s decreased my recovery time from Post-Exertional Malaise from our weekly grocery shopping trips to one or two days instead of 3 or 4 days – a big improvement, as these things go. I’m still very sick, still bed-bound most of the time, but I at least want to do more and interact with the world more.

Menopause? My body seems to have realized, as I approached my 48th birthday on June 25th, that I should be in menopause. I had pretty much convinced myself that menopause would never be an issue for me, partly because I had a 5 year lapse in my cycle, which seems to have been related to my pain medication, and partly because my body is so dysfunctional, why would it be an issue? Suddenly menopause hit me like a brick, and I was alarmed by a heavy period that lasted a month – and it takes an awful lot of blood to alarm me. The hormonal swings have been massive, worse than any PMS I’ve ever had – hours of tears, minutes of red rage, back to tears, and finally to a more or less stable state of mind, though more emotional than is usual for me.

My 48th birthday was celebrated with a wonderful gourmet meal cooked by Rhiannon & Ben, everything I asked for (a whole Herb Roasted Chicken was the highlight) and more – even the forbidden fruit: caramel and chocolate covered apples! We’ve been sharing those, as sugar is off limits for those of us with systemic candida (yeast). We washed it all down with sparkling lingonberry juice, a gift from a friend for my last birthday, an amazing treat that tasted much like champagne – and we even served it in wine glasses! Much laughter and many smiles filled my room – a welcome change.

I have struggled to accept my aging body and the dangerously close approach to that oh-so-important birthday in 2 years, my 50th.  But for one glorious day, I  embraced the aging process, gleefully trimming my hair shorter than it’s been in years, intentionally allowing the gray I’ve earned to show.

Dental Woes: A lost filling in a tooth led to a very long and unpleasant visit to the dentist. The dental woes of those of us with CFS/FMS are not often discussed, but we often have them. You can almost pinpoint the exact moment of onset of my illness by the sudden rash of cavities that began. I was cavity free until I was 30. Since then, it’s been steadily downhill, and there have been so many fillings I’ve lost count, and two root canals. One reason for these issues is likely the medications I take, many of which cause extreme dry mouth, but it’s also because I’m immuno-compromised. I’m sure the periodic flares of candida & thrush don’t help matters, and then there’s the whole issue of mal-absorption, and the ensuing nutritional deficiencies.

My mother wanted me to see her dentist rather than the sub-par dentist who I’d been seeing, so I headed out to her house, an hour away, to get the work done, and to discuss my possibly getting a laptop for my birthday as a present from my whole family. I still am waiting on SSDI, living on very limited income. But I need something small & yet powerful, with ample space to back up 10 years of business records from the home business I had to close in January, 2007, due to my illness. I’ve been mostly online – blogging, Facebooking and all – on my cell phone, from my bed. My beloved Vaio laptop, heavily used in my business, is now 6 or 7 years old. It’s far too large and heavy to use in bed, and is approaching the age of retirement. But small & powerful laptops don’t come cheap. I’d been researching them for months.

On Tuesday, I cried in the dentist’s office as he worked on me. I can only recall crying in a doctor’s office one other time, despite the hundreds of appointments I’ve had. It started with “Well, you’re really full of surprises!”, and soon words like “deep pockets,” “scaling,” “de-calcification,” and a “still inflamed root” in a tooth that may need a 2nd root canal, along with a long list of cavities (6 in all – 3 filled that day & 3 to go) were added to my “treatment plan.”

It was just so overwhelming, I couldn’t help the tears that silently fell down my cheeks. My wonderful mother held my hand, wiped my tears, and asked me if there was anything I needed. I think I might have broken her heart when I said, “a bullet to the head.”  Sorry, Mom. It’s hard to be strong all the time.

A growing concern as the dental work progressed was the huge cost – I have no dental coverage; there’s none available for folks like me. Virginia Medicaid covers one thing as far as dental work: having a bad tooth pulled.

I knew my amazing mother was going to be footing the bill, just as she has footed the bill for so much.  Without her support, we’d no longer be living on the Mountain in the place we’ve come to love so much, among many other things we’d no longer have. I don’t tell her often enough: Thank you, Mom. I’m so very grateful for all the support, financial as well as emotional, that you’ve given me through the long years. You’ve stood by me through thick and thin, and I couldn’t ask more a more loving and caring mother. I’m so thankful that you are my mother.

Later in the day on Tuesday, as I tried to recover from the stress of the dental appointment, I got a phone call from my doctor’s office: the MRI results confirmed the SLAP tear the doctor suspected. This is one of the most difficult orthopedic issues to repair, involving things like surgery, anchors in bone, immobilization, and incredible amounts of physical therapy.  A close friend, who is a physical therapist, had warned me the PT would be months long, very, very difficult & very painful. Until the surgery and PT happens, the level of pain continues to grow. The cortisone shot helped for a month or maybe 6 weeks, but set off such a flare of issues that I hesitate to get another one.

I fled my mother’s house in a state of deep despair after getting the news – I had to get out, get away, even if it was just a couple blocks to the nearest Micheal’s craft store. You, my lovely friends, have often told me that I have handled the many years of illness with grace & strength. But sometimes, there’s not so much… one thing piled on top of another in the last weeks brought me very low.

As I wandered the store in a daze, my mother called to tell me she had rallied the family: with the birthday money my brother & sister-in-law had sent, and assistance from my eldest daughter, the laptop I’d been dreaming of & wishing for for many months was within reach. I had one already picked out, and had looked at it the day before. The Microcenter was next door to the Michael’s.

As I came away from the store that night, my new laptop in hand, it was with a deep and enduring gratitude for my family.

Recently, I’ve learned from dear friends who are also chronically ill of the difficulties they have with their families, who are not nearly as supportive or understanding as mine is: families who compare the complete and utter exhaustion of CFS to how tired they are after working in the garden; families where guilt is layered on the ill person so deeply that there’s no space for love & support; families where no one even believes the chronically ill person is ill, despite their struggling for years with the horrible, living death of CFS/FMS and other Neuro-Immune Diseases; and abusive spouses who seem to take pleasure in their pain.

I’m really very lucky, and very, very blessed, to have all I have: the love & support of my family; the closeness I share with my spirit-sisters; and the mountains I call home. 

So despite the tumultuous times of the past month or so, I end this post on a positive note, full of gratitude for all that I have, and trusting that no matter where the future leads, what ups and downs life throws at me, I will get through it.