Dusty Upside Down

I took this picture of my cousin's son while he was having fun in the hot tub. He's such a handsome boy--I thought his face looked as perfect upside down as it did right-side up.

Voices from the past

Have you ever gone back and listened to old answering machine tapes? Everything is digital now--I retired my tape answering machine when I turned off my land line phone. Not able to sleep, I just listened to both sides of the microcassette inside the high school graduation gift from my boyfriend. (The gift that was supposed to record his attempts to reach me didn't turn out to record many attempts over the years. Ha) I heard the voices of friends from college, friends in town, friends I'd unfortunately lost touch with, my parents, my aunts, and my brother before his voice fully changed. Yeah, I even had instances of the voice of the one who gave me the machine. The most precious recording, however, is of my Grandma Burton singing "Happy Birthday" to me with two of my aunts. It's a dear gift to hear the voice of the one I miss most--a voice and words she wasn't able to gather long after that as her Alzheimers worsened.

It's funny--the content of some of the messages gave me distinct clues as to when the were recorded (year, month). I still had some messages from the Systems Analysts I worked with from 1999-2000 on our disastrous conversion to PeopleSoft Ledger (disastrous mainly for those legacy systems like Budget that were making "just in time" changes to produce what our users were accustomed to seeing). Blah blah. Now it's as if none of that happened and I didn't work there. At the time, it occupied numerous hours, all days of the week. It's so strange to hear job & jobstream names rattled off of which I have little/no recollection. Hard to believe that was 9-10 years ago...

Just another exercise that pours a little salt on emotional wounds I've chosen to reinjure lately. I think I do this out of shear boredom. So stupid. I need constructive activities...and the energy/pain relief to do them. Whew...

List'nin' to the rhythm of the fallin' rain

...tellin' me just what a fool I've been.

I wish I could say I've had a big revelation in this pensive, all-day-in-bed day, but nothing has come so far. It's been nice to lay here for a while and "talk" (text message) with my great friend in WI. We've planned out our would-be purchases at Best Buy, and have moved on to talk of car trades. How I miss him...

Now, what will I do for the rest of my day? Probably occupy my couch so I can keep lying down; maybe try a movie. Hmm...

To sleep or not to sleep

Heavens...I don't know what to think about anything. Today, I slept all day long--went to bed about 2:00 a.m., got up for a bit around 11:00 a.m., went back to sleep until 7:00 p.m. The day before, I was unable to sleep--didn't fall asleep until 7:00 a.m. Whee. Tonight, I couldn't remember the word "bed" and had to refer to "the part of the truck behind the cab" when I was talking to my mom. How is it that a string of words will come to me and the simplest things are just gone? Awesome.

I don't know what to do about the "future". Right now, I'm waiting for the antibiotics to "work"/do something/whatever. Maybe the appt with the infectious disease doctor will turn up something. Maybe he'll tell me chronic Lyme is a hoax. Either way, fun fun.

Will I ever be able to do things again that bring in an income?

Another day, another...nope--no dollar...

Well, here I go a-blogging. Feeling isolated and alone in one's house sometimes drives you to the edge of reason. I'm pretty sure I dove off that edge a while back.

There are a few who know what things have been like for the last few years, even fewer with whom I've stayed in contact. So here's a little outline:

• March-ish, 2005 - started having strong headaches. Somehow they were different than any sinus or neck-generated headaches I'd had in the past. They came out of nowhere, and I couldn't find a pattern to their occurrence. Even worse, I couldn't find something that would "help" during a headache.
• Throughout 2005 - headaches became more frequent and stronger. Sometime in the fall, I started to get an unspecific feeling of "anxiety". It would just hit and I couldn't calm myself down. Reluctantly, I started an an anti-depressant for the first time. This seemed to help a bit with the anxiety.
• April, 2006 - hit with crushing depression. Anyone who knows me knows I'm an emotional gal. I feel deeply and express largely. Being depressed was not new to me, but this wave of disabling depression was. Some days I didn't leave my bed. In addition to the anxiety and the ever-increasing headpain, I was toast. I started stronger anti-depressants and later started counseling.
• August, 2006 - my headaches (individual, plural) gave way to constant headpain (no beginning or end, 24 x 7 x 365). I wasn't responding to "migraine" medications (Triptans, anti-seizure meds, blood pressure meds). At this point, I was still seeking treatment through my general practitioner and psychiatrist. The only thing giving me partial relief was the minor pain med being prescribed by my GP (Fioricet). Fogginess and difficulty finding words accompanied my headpain.
  
• Fall, 2007 - saw a neurologist for the first time. He sent me for my first MRI and started me on the "wait and see, trial and error" program of migraine medications. MRI = normal. Migraine meds = ineffective.
• April, 2008 - began to see a chiropractor. Through a moving x-ray, he found I had "hypermobility" in my upper cervical vertebrae, probably caused by my failed 'hit approach inside a school bus to rile up the team before a tournament' in 1992. Visits to the chiropractor and his physical therapy staff unfortunately exacerbated the pain. After 6 weeks, I terminated treatment there.
  
• June, 2008 - due to my gender, age, and weight (yeah, this was a delightful conversation to have over and over with the male nurse practitioner at the neurologist's office), I had my first lumbar puncture to determine if I had a condition called "pseudotumor". Essentially, it's elevated cerebral spinal fluid (CSF) pressure, potentially caused by weight or other factors. They call it "pseudotumor" because your CSF reacts the same way it would as if a tumor/mass were pressing on your spine. My opening CSF reading was on the high edge of normal, but still considered normal. Surprisingly, I had four days of feeling "better" following the procedure--not great, not good, but better.
• September, 2008 - still unresponsive to medication of any kind and (to repeat) in year two of constant pain, my neurologist referred me to what he considered the best headpain clinic in the nation--MHNI - Michigan Headpain and Neurological Institute in Ann Arbor. I entered their inpatient program on September 26. Little did I know I would meet (hopefully) lifelong friends there and commiserate on several levels with others that had the same non-diagnoses and social stigmas that I had. We saw each other through multiple procedures (epidurals, nerve blocks, lumbar punctures, MRIs/MRVs, etc.) and numerous medications (generally pushed through IV to determine their effectiveness quickly). We each fell in love with our nurses and the lady who came to our bedside to obtain our meal requests each day. Due to my increasing count of pain-related absences from work, I was in an unpaid status and being reviewed by my employer for continued affiliation with the company while in the hospital. In between treatments, I was faxing things to them and on the phone with HR regarding how things stood with my employment. To pay my bills during this time, I cashed in my paid vacation.
  
• October, 2008 - after two weeks in the hospital, I was released to go home on October 11. Having had two more lumbar punctures (LPs), a facet block, a cervical epidural, and loads of a new anti-seizure med (Neurontin) and a diuretic (Lasix) to help lower the CSF, I felt well enough to drive home and return to work if my employer let me. Since I had experienced a few days of relief after each LP and with new meds, my diagnosis was IIH - Ideopathic Intracranial Hypertension (or pseudotumor). Within a couple days of being back home, the pain began to steadily increase. My employer was allowing me to continue my affiliation under an Americans with Disabilities Act (ADA) accommodation. To maintain this affiliation, I had to work for thirty consecutive workdays to reinstate my sick leave benefit (paid or unpaid); if unable to meet this requirement, I would be immediately terminated. On October 20, I returned to work. The pain continued to increase and soon was back to pre-hospital levels. I did manage to work the 30 days (and more), but came home crying most evenings and slept every possible chance I had. My return to work had brought me increased responsibility and increased time at work.
  
• November, 2008 - I began physical therapy. I stayed with this for 5-6 weeks, but each treatment (even including massage) increased my pain and left me physically and mentally weakened.
• January, 2009 - with no other arrows in our quiver, I went in for a fourth LP--desperate for pain relief and "assured" that this would at least give me 4-5 days of ease. Sadly, the opening CSF pressure was almost as low as my previous closing pressures had been. Laying on the table, needle inserted in my spinal sac, I almost cried as I heard the opening pressure--fully aware that my situation was no longer the same as before. The neuroradiologist (?) worked with my neurologist in Michigan to determine what to do. She took off as much fluid as she could get, lowering me into the lower part of the "normal" range. This gave me no relief at all and left me hopeless.
• February, 2009 - during a visit to MI, the anesthesiologist that performed my inpatient treatments gave me occipital nerve blocks (at the base of my head, where it meets my neck). This numbed the back of my head, but did not relieve the pain. At the behest of my MI neurologist, I began accupuncture back at home. I did this for 4 (?) weeks, pain increasing after each treatment. My accupuncturist was awesome and very compassionate, but for some reason, I just wasn't responding well.
  
• March, 2009 - at the direction of my MI neurologist, I approached the pain specialist associated with my accupuncturist to perform a second cervical epidural. He was able to get me in later that week--March 6. I had five days of lesser pain--I was ecstatic! Unfortunately, after 5 days, the pain came back in a huge wave. Since epidurals are often done in sets of 3 (over a span of time), the doctor decided to try again--this time in combination with median nerve blocks (more in the center back of my head). I had this set of procedures on Friday, March 27.
• Tuesday, March 31, 2009 - after a full day of work, I was fired just before 5:00 p.m. I was escorted by security through three buildings, exiting the complex I had occupied as much as my home for the last 11 years--an almost 13 year career with the company my father had retired from down the drain.
• May, 2009 - pain at its pinnacle and desperate for relief, I called to schedule an appointment with a plastic surgeon in Cleveland. He performed a surgical technique involving cuts around the circumference of the patient's head, successfully relieving "migraine" pain for scores of people. I had provided an article about the procedure to my MI neurologist for review and advice; the director of MHNI knew the surgeon and was willing for me to try this direction in care. My appointment was scheduled for July 10.
• June, 2009 - two of my friends/fellow sufferers from the hospital in MI had been diagnosed with chronic Lyme disease. They were encouraging me to get tested. After multiple emails, phone calls, and articles sent, I decided to give the idea legs. I had an appointment in MI with my neurologist on Tuesday, June 9; I set an appointment with a Lyme-literate doctor in Maryland on Thursday, June 11. During my appointment, he found some previously undiscovered "neuropathies" in my hands, arms, feet, and legs. He also found that the area around my gall bladder was very tender. I had my blood drawn at two locations to be tested for tick-borne illnesses, Celiac disease, vitamin deficiencies, and various other ailments. I also had a brain SPECT scan to determine potential impact to the functionality of my brain.
  
• July, 2009 - having begun exploration into potential tick-borne illness, I decided to forego the Cleveland cutting route for now. On Thursday, July 16, I saw my Maryland doctor (my MD MD, as it were) to review the results of my labs and brain scan. The first thing he mentioned to me was my "highly abnormal" (his words) brain SPECT scan results (see picture attached at left). He continued to walk through my lab results, indicating my Lyme results were "equivocal"--not definite; I had only one band in each column (antibodies indicating presence of past infection and current infection). Defeated and a bit confused, I came home with prescriptions to begin long-term oral antibiotic treatment (as if I had Lyme).
• August, 2009 - a little over 3 weeks into antibiotic treatment, I feel no different; not better not worse. I sleep a great deal to diminish my awareness of the pain. Even when I'm not sleeping, I'm laying down most of the time--I feel worst when my head is erect (sitting, standing, etc.). One of my chronic Lyme friends had identical lab results to mine (as far as the Western Blot test for Lyme); she is now in her fifth month of IV antibiotics and has many days of NO headpain at all. Just yesterday (8/10), I saw my general practitioner to update her on my Lyme journey and ask her if she would consider starting an IV for me (so I could try IV antibiotics). She was caring and receptive to my questions and information about Lyme, but wanted me to consult with the infectious disease specialist in town. I have an appointment with him on August 26.

That's the short of it (though it turned out to be quite long). Just trying to figure out how to live day to day--physically, mentally, financially. I am very fortunate that my parents have supplemented my unemployment income for 3-4 months now, though I'm not sure how long that can continue. I feel physically and mentally unable to maintain a reliable work pattern--my mind is not at all what it used to be. My short-term memory is severely diminished and finding words when speaking has become a chore. My attention span and understanding are horrible. I honestly believe that all I have left is my soul. Having eternal assurance of Heaven, it seems that no good comes from me remaining here on Earth. Nevertheless, I linger.