Plans

I haven't been writing much because I haven't been doing very well.  Lots of brain fog and not a lot of energy.  The steroids are helping.  My pain levels are way down.  I have a little bit more energy than I've had since last month.  Yesterday I managed to make an omelet for breakfast and then cook dinner afterwards.  That was a major accomplishment for me.  Of course I then slept for 11 hours last night and I've been stuck on the couch all day today.  Bleh..

Despite being a wreck I'm making plans anyway.  Cowboys and Aliens is being released this weekend.  I think this warrants another trip to the cinema.   I'm looking forward to seeing Daniel Craig and Harrison Ford in this odd SciFi movie.

However, I'm going to have to wait a week because I've been invited to an island off the New Hampshire coast for a couple of days.  The folks that invited us just had a health crisis themselves so they totally get the whole CFS thing.  They are so understanding and accommodating I'm not worried about going up there at all.  It is pseudo camping.   There is a main building with a kitchen and rec area and five sleeping cabins.  We have to take a boat out there and there is no electricity.  I'll be taking a plethora of pills with me since getting to a market is a big deal but I can hardly wait to go.

I'm also hoping to go out to tea to a real tea house with a friend of mine.  Mind you we've been trying to do this for two months now.  I first discovered the place during a trip to my CFS doctor's second office (his primary office was under construction).  I am so looking forward to having a proper British Cream Tea with her.  I'll have to wear my pearls.  :-)

http://www.dorsetcafe.com/menus/afternoon-tea/

We all need things to look forward to.  Sometimes it is the simple things that bring the most joy.  Going to the cinema with your husband.  Going on a camping trip with old friends.  Or going out for tea with new friends.  I can hardly wait!

Geek Humor: Chemistry Cat

Peace and Quiet

The four day heat wave has finally come to an end.  Of course there was the usual misery of my body not doing well with the heat and humidity.  It didn't matter what the room temperature was I was too hot.  I was amazingly irritated and grumpy.  I have spent the better part of the last four days confined to two rooms of my house.   This is worse than winter when I at least can roam the entire first floor of the house.  Now I had the bedroom or the living room to choose from.  If I braved the heat I could get on the internet for a few minutes in the office before having to retreat into the other two rooms.

My husband knew the heat bothered me a lot so he went out and bought me an extra air conditioner for the living room.  One of those portable floor models.  Because we don't have double hung windows I was forced to pump the hot air out into the kitchen, which made that room even more unbearable than it already was.  The back of the house has skylights which turns it into a Suzybake oven on sunny days and now I was pumping waste heat in there as well.  Can you say BBQ four days in a row!?!

Anyway, I knew from last summer that the heat bothered me.  I was expecting the hot flashes and severe sweating that I had last summer.  Heck it was so bad I had to wear thick cotton socks around so that I didn't leave wet footprints on the floor.  Not this year.  What bothered me was the noise.  The relentless unremitting whining grinding sound of air conditioners running 24 hours a day.  The noise got to me.

I've spent the last year in quiet.  I live in a quiet neighborhood.  I generally don't listen to music.  I talk with my friend via the internet rather than by phone.  I only have the TV on so many hours of the day and my family isn't around much so I spent most of my waking hours in the quiet with only my cats annoying me when they want food or decide they have tales to tell me.  By the third day, I was ready to rip someone's head off.  Everything was grating on my nerves.  It was like someone giving me an Indian sunburn that wouldn't stop.  On the third day I ended up in bed with ear plugs in and two pillows over my head so that I could have some relative quiet.  It still annoyed me that I could still faintly hear the AC grinding away.   Plus my head was hot under the pillows.  GRRRR!!!

Finally last night my husband drove me north to NH to Hampton Beach.  A place that is noisy itself but it was ten degrees cooler up there so we  turned off the AC, rolled the windows down and cruised through the strip up to the north side to one of the smaller beaches.  Hubby found a parking space close enough to the water that I got out of the truck and walked down into the surf.  The frosty.  Cold.  Icy surf.  OMG, the Atlantic is so cold up north.  I have no idea how the kids swim in this stuff.  But it felt delicious.  I was standing in the roaring rolling icy surf in my bare feet.  The water washing over my toes and pulling the sand out from behind my heels.  Standing in the surf gives you a weird vertigo even when you are well and I found it even more disorientating with CFS.  But what the heck if I fall I'll just be soggy for the ride home.  Won't be the first time I've fallen fully dressed into the surf and ridden home in my underwear ;-)

So there I stood in the encroaching dusk, kids playing hundreds of yards away, with freezing cold toes and the surf washing away all that horrible nasty tense AC irritation that had been building up in me for four days.  It was delicious!!!!  It was delightful!!  I was finally relaxed and dare I say happy.  It didn't take long before I had to sit down.  My husband went for a long walk down the shoreline while I sat in the dry sand swatting at various bugs that decided I would make a nice snack.  I truly wished that I could have sat quietly, letting my body relax further, closing my eyes and only listening to the waves washing in and out, but the darn bugs wouldn't let me.  When a black fly came after me, I was forced to move again so I went back into the surf.  I walked along the beach with the water lapping over my feet.  Icy cold and glorious.  I felt normal.  I felt normal for the first time in months.  I was walking.  I was strolling along the beach barefoot in the water.  Bliss!!

Next time I go I'm taking an old aluminum style beach chair so I can sit in the surf with my feet getting wet.  That would make me very very happy.

Extra! Extra!

I have had a couple of very very good weeks!  Of course you've already seen some of the good news: I was awarded my long term disability case, hubby loves his new job, and I have my old hubby back so the marriage is starting to hum along again.  Yay!!

But wait there's more!  The mailman has been good to me this week.  He has brought me my paperwork for LTD.  I just have a few forms to fill in and I get all my various insurances paid by my old job.  Also they are refunding all the money I paid for COBRA.   Seven months of $1600 payments adds up to a nice chunk of change.  Then there is eight months of back-pay and I can get my meds reimbursed as well.  I just have to find the dozen or so receipts from the last seven months.  Of course I'm socking all the money away so that I have lawyer money for when I have to do this all again in two years.  Blah.  I'm not looking forward to that.  But the next piece of news might help with that....

The mailman also brought me a letter from Dr. Anthony Komaroff.  He has accepted me as a patient!  Woohoo!!  It might be a few months before I get to see him but I am now going to be under the care of one of the leading CFS specialists in the country.  Yay!!

The mailman also brought me a letter from the MBTA (MA Bay Transit Authority).  They accepted my application for the handicapped van so I now have a cheap ride so I can get myself to the doctor after my kid leaves for college.  We are going walker shopping this weekend.  I'm getting one with a seat so I can sit down while waiting for my MBTA Ride to show up.

As for meds, more good news, the steroids seem to be kicking in.  I have way less pain and actually keep forgetting to take my Celebrex.  My sleep schedule is slowly swinging around towards normal.  I'm getting tired earlier so instead of going to bed at 4am, last night I went to bed at midnight!  That hasn't happened to me since I had that shot in my shoulder.  I'm even sleepy now and it is only 2am.  I'm also sleeping very long hours again which also happened to me right after I got my shot.  Last night was the longest, 14 hours.  It should taper off as I catch up on high quality sleep.  When the shot settled down I was sleeping 9 hours from midnight to 9am which is reasonable.  Beats 5am to 1pm which I was doing two weeks ago.  Anyway, the doc just increased the steroid dose again so things should improve a bit more.  I just have to get past this heat wave which so knocks the stuffing out of me.  I'm wondering if I am going to have tons of energy when the temps get more reasonable.  Ah finally some good stuff is happening.

Oh and I'm seeing our couple's therapist on my own instead of attempting to climb stairs to see my old shrink.  He does CBT so I'm looking forward to trying it out and seeing if it helps any.  My attitude can always be improved upon even if nothing changes physically.  It will be a positive thing in my life.

Battle of the Birds

It has been an exciting week in ornithology this week.  I discovered that I have not one but two Cooper's Hawks living somewhere near my house.  But let me backtrack a bit...

I developed my love of nature from my Mom.  I think it was some combination of her enjoying bird watching herself and her reading me English Fairy stories when I was young and impressionable.   I used to help her garden and although she claimed she had a black thumb she was tenacious and was always trying to grow various plants and flowers in our horrible sandy soil on Cape Cod.  She was the one I learned my first birds from, the Robin, the Chickadee and the Bluejay.  We still email and Facebook our various bird sightings to each other and I recently gave her her very own copy of Sibley's Birds, my absolute favorite bird identification book.  I originally bought it as much for the art work as the bird ID.

Anyway, back to the present:  a couple of days ago when I was sitting out on my deck I spotted a raptor eating something up in the oak tree in my backyard.  I very slowly walked back into the house to grab my binoculars so that I could get a closer look.  I then slowly came back out and sat back in the deck chair and proceeded to try and find the bird again.  He had moved.  I put the binoculars down only to notice grey feathers raining down on me from the tree.  I followed the trail up to its origination point on the other side of the tree from where I had been looking.  Using the binoculars again I took a closer look: there was a large bird with a grayish back, light grey head, black cap, golden eyes and orange striping down to its very fluffy feet (reminded me of some varieties of chickens that have feathered feet).  I had never seen this type of bird.  I memorized it general size, shape and major markings so that I could try and find it in my Sibley's book.  I found that if I don't make a conscious effort to do this I start to forget features as I look at other birds in my book and then can't figure out which one matches my bird (turns out there is a real neurological reason for this that doesn't have anything to do with CFS: see the book Brain Bugs).

I couldn't decide if my bird was a Cooper's Hawk or a Sharp Shinned Hawk.  Neither of them had fluffy feet with stripes down to their ankles.  I went on Cornell University's Ornithology Facebook page and asked for help and everyone suggested the same two hawks.  After some searching on Google I found a picture of a Cooper's Hawk that looked almost identical to the one I had seen:

http://www.birdforum.net/opus/Cooper's_Hawk

Then today I saw the bird again.  I more or less confirmed the Cooper's Hawk markings but couldn't see it clearly through the leaves of the oak tree.  It has an affinity for my oak tree apparently.  It called a few times, a single kee, kee, kee sound, and flew off.  I could see food dangling from its talons so it must have just picked up dinner.  I went inside and looked up Cooper's Hawk calls on Cornell's site and it turns out he was using the "Honey, I'm bringing home dinner" call.  Then I listened to the "Honey I'm hanging out near our nest" call and it clicked.  Those bird calls that have been driving me batty these last few months because I haven't been able to identify the bird have been the different Cooper's Hawk calls.  This means that the nest must be near my house and there are probably young in it.  Hence the hawk bringing home dinner as opposed to ripping it apart in the tree like it did a few days ago.  

While inside the house, I decided that since I've had a lot of great bird sightings this year it is time to make them official.  So I registered with eBird and logged my Cooper's Hawk sighting.  At least I could do a little scientific field work from my back deck while I am sick.  Makes me feel useful and sciency at the same time.

I went back out on the deck to sit with hubby while he grilled burgers for dinner.  My hawk landed back in the oak again and this time I had a clear view of him so, Sibley's in hand, I got a good look: stripped tail? check.  black cap? check. grey back?  check orange mottling?  check.  Wait a second!  This was a different Cooper's Hawk!  It has a white tushy.  The whole bottom third of its body is white!  It didn't have orange stripes down to its ankles like the one I saw the other day.  I have TWO Cooper's Hawks!  Probably a nesting pair with young!  Woohoo!!  Not only did I get to see a bird I've never seen or heard before this year but now I have two of them that live near my house and like my oak tree!  Oh happy day!

After dinner, I was at the sink in my kitchen when I saw the hawk swoop past the window so I ran (make that walked fast) to the deck where I had left my binoculars hoping that he would land in my tree again.  This time it turns out he was chasing one of the local crows around.  The hawk was winning until the rest of the murder showed up and started one hell of a ruckus.  There were angry squawks and much wing flapping from all of them.  I think the murder ended up chasing the hawk off since all the bird calls rapidly got further and further away.  I could just make out far off tree branches rattling as the crows sent up the alarm until the hawk finally left.  What a great bird watching day!

Now that I know there are two of them, I just have to figure out which is the male and which is the female.  I asked again on Cornell's FB page and a helpful person told me that the female is the bigger of the two birds.  So now I just have to pay close attention to their different sizes when I spot them.  Now that I know their calls, I should be able to spot them quicker since I know what I am looking for.  Also I know they like landing in my oak around 5:30pm with their dinner catch before heading to their nest.  I also want to try and locate their nest.  It has to be close by because of the call patterns I've heard.  I'm even wondering if it is the Linden tree in my front yard since I've heard some very loud squawks right outside of my window when I've gone to bed at 4:30am.

So I've got some scientific investigative work ahead of me.  I'm excited.  I'm going to try and start logging my bird sightings.  Maybe I'll start carrying a notebook and pencil along with my Sibley's and binoculars when I go out to sit on my deck and then spend a little time each night on eBirds logging my sightings.  This is exciting!  I can help ornithologists with their bird counts while sitting in a deck chair in my backyard and get to learn things at the same time.   Yay!!  I can do science stuff again!  Woohoo!!

I'm Melting

It has been in the 90s here with very high humidity.  I hate it.  It makes me feel worse.  And it keeps me off the internet since I don't have a computer in the air conditioned part of the house.  I can hardly wait until it drys out a little since I've got a couple of ideas for some good posts. 

A Little Advice

Well maybe a lot of advice.  This is how I won both SSD (social security) and LTD (private) disability insurance.  They aren't quite the same and require slightly different tactics.  Just to be perfectly clear I'm not a lawyer.  This is just my experience.

Some things to keep in mind:

• Even though SSA is a federal program each state has its own SSA office.  So while there are federal guidelines for obtaining SSD the actual speed and ability to do so varies from state to state. Turns out MA is pretty efficient.
• LTDs are typically supplied through work although some policies can be purchased directly by the consumer.  Hubby did this since he ran his own company.  LTDs are always a good idea!
• SSA's primary concern is that you can prove that your illness is interfering with your work.
• LTDs primary concern is that you are trying to rip them off so they want hard medical evidence that you are sick.
• SSA has a deadline of 120 days for you to submit your medical evidence once you submit your application.  It is normal for the first application to be rejected.  Expect it and appeal.  I've forgotten the deadlines involved here but do NOT miss them.  You can appeal up to the court level which takes roughly two years.  You can submit new medical evidence right up to the court date.
• LTD is a bit more complicated: you apply, they think about it and make a decision.  If your case is rejected which is normal then ERISA law kicks in and you have exactly 180 days to appeal the decision.  Once you submit the appeal they have 45 days to make a second decision.  If you are rejected again you can take it to court but beyond the appeal no further medical evidence can be submitted and the court case is solely one of breach of contract rather than a medical case.
• Write down all deadlines in bold letters in a place that you will see them all the time.  There are no grace periods! Expect to use overnight mail and fax machines a lot.
• Keep copies of everything!!  I must have close to $200 in copy fees at Staples but things get lost and it is a good thing I had copies of everything.
• Start some sort of filing system early in the process.  I get so brain fogged that organizing everything on a good day saved my butt when I had to find a lost piece of paper right now on a bad day.  
• I also had a running spreadsheet file with the date, doc and outcome of every single medical visit.  I also added in crashes and meds.  Again great way to keep track.  With the memory loss, I often had no clue when things happened or what happened. 

Here is the stuff I put in the packet I used to plead my SSD case for CFS (I won this on the first try):

1. Work
1. Resume: get very detailed including how much you sit, stand and the heaviest things you have to lift for your job.  Also include anything out of the ordinary.  In my case this included working in cleanrooms in bunny suits, bio-chem labs in lab coats and gloves and laser labs in goggles.  Remember these are office staff so they won't necessarily have any idea of what you actually do on a day to day basis in your job.  Heck, my own HR department had no idea my job was so physically demanding.  They told LTD that I sat at a computer all day and didn't lift over 25lbs.  Get detailed!
2. Training: list every workshop, certificate and self taught thing you've learned for your job
3. Last five jobs: this is required by SSA and include company name and salary.  I don't remember if contact info is required but I included it in mine. 
4.  Letters of recomendation: I included ones from several jobs.  I've had lots of bosses even at the same company so when things have gone particularly well I've asked for a letter of reference.  I've used them for promotions internally and I've kept copies of them.  I never thought I would end up using them for SSD.  I included them to show that I was a good employee and good at what I did.
2. Medical Evidence
1. Every clinical note from every doctor visit I went to.  Even if it wasn't flattering (i.e. the doc was clueless about CFS and said things like "everything was normal upon examination: should be able to report to work"  (yes one person actually said this).  I had to write to each place to obtain these and some places charged for them.
2. List of all providers with contact information.  This is why I didn't withhold any clinical notes.
3. Letters from my main providers stating that I was ill and couldn't work and why I couldn't work and how long they thought I wouldn't be able to work.  Affidavits are nice but not necessary for SSA.  I had one from my primary doc, one from my shrink and one from my chiropractor.  I chose these people because they all knew me before I got sick so they were best qualified to state how sick I was and knew the full effect of CFS on my person.  BTW, it helps if you show up to a few appointments at your worst so they know how crappy it actually gets.  Clean hair be damned.
4. Symptom diary: keep a diary for several months and log symptoms, meds, supplements, activities and food.   SSA has a rule that if you don't have sufficient medical evidence (meaning there is no definitive test for diagnosis) a symptom diary is an acceptable substitute.  Remember they are interested in how the illness impacts your daily life.  You have to prove to them that you are unable to function normally.
5. A print out of the CDC definition of CFS and a copy of the document from WPI stating that CBT and GET don't work.
3. Medical & Work
1. Detailed description of how the illness impacts your ability to do your job.  In my case I can't use a wheelchair in a cleanroom or bio-chem lab.  The shakes I get would be dangerous in any of these labs.  I can't walk or stand or reach or crawl all of which I need to do to perform my job as an engineering assistant.
4. Personal
1. Letters from friends and family stating what you used to be able to do and how bad things are now, i.e. how CFS has totally screwed up your life.  I had letters from my Mom, sister and hubby.  They talked about my being a gardener and a Toastmaster and a figure skater and how I was stuck on the couch and couldn't do anything.
2. Videos of a bad day.  I get neuro symptoms where I'm unable to walk or talk well and I start to loose my gross motor skills.  On one of my truly bad days my husband took video of me trying to talk and then of me trying to walk across the room while I was all wobbly.   I also included footage of me during a skating competition just before I got sick so they had a before and after comparison.

Stuff for LTD:

LTD is done in stages and this will vary from company to company.  Things will also vary depending upon whether the insurance policy is directly from the insurance company or whether the insurance company is just the manager for the employer's policy.  

In my case my work was a self funded policy that was managed by a big name insurance company.  Sometimes this can work to your advantage.  If you are friends with the right people at work you can have HR or whomever have words with the managing company and have your claim approved right away.  The place I worked was too big for me to successfully pull this off.  In fact my place was so huge it took a month to get in touch with the right person so that I could get a copy of the legal version of the insurance policy.

First stage:

Fill out the paperwork application.  Follow all the instructions.  In my case there was a telephone interview where the guy got all friendly and tried to trip me up and admit that I had been out in the yard doing stuff while claiming I was too ill to work.  He asked for a list of all my providers to date which I sent him along with the clinical notes to date.  I was also required to apply for SSD by a certain date.  To meet this deadline I applied on line which is NOT recommended with CFS.  It is a long and tedious process and I was cooked by the end of it and needed hubby to proof read everything I was typing.  Don't put this off to the last minute and use the paper forms instead.

Because I have CFS there was no hard medical evidence that I was sick.  It didn't help that my doc kept writing down that my exams were "normal" and not including the fact that I was still showing signs of viral illness.  Lesson learned: check the clinical notes, find out how your doc is documenting things and have them make changes if necessary.  Clinical notes tend to be riddled with errors particularly from larger institutions and they need to be fixed immediately because they become gospel.

My claim was rejected due to lack of medical evidence.  They said that all my symptoms were self reported and there was nothing in my medical record to support my statements.  They also claimed that since I twisted my ankle I must have been bouncing around doing stuff, i.e. well enough to work, and that I had taken myself out of work without consent from my doctor (hey this makes no logical sense but this is the insurance company) when in fact they never asked about it.

Stage Two: The Appeal

1. Start the 180 day clock.  Write down the due date in huge red letters.
2. Hire a lawyer.  I'm not kidding on this one.  This is a long tedious process and you'll need the help.  Yes, it has cost me $12,000 in legal fees but due to ERISA you HAVE to get the appeal right the first time since you aren't allowed to submit any more medical evidence after the 180 day deadline.  Also it is a cost benefit thing.  I spent $12,000 in legal fees but if I am disabled for life we are talking in the vicinity of one million dollars in benefits.  It is so worth it to get a lawyer involved at this stage.  Try to find one that knows about CFS or FM (it is similar to CFS).  Mine had done FM claims before so even though she wasn't as familiar with CFS she knew the procedure to win a claim.
3. Get as many medical tests done as needed to help with your case.  In my case it was virology, endocrinology, neurology, rheumetology, neuropsychology and a CFS specialist.  Also MRI of brain, CT of abdomen, UT of the kidneys and UT of the thyroid.  Another good one to consider is a functionality test that would be done at a physical therapy facility.  Make sure you do something to make you crash first so that when they test you you are at your worst.  There are some facilities that do this testing two days in a row on CFS patients to show how energy levels can't be maintained.  However, most places don't understand CFS so they don't get this and don't test for it.  However, you can always bugger the test yourself by over exerting yourself the day before.  By the time I found out about functional testing it was too late to arrange for it before the 180 day deadline.
4. Get a copy of the legal version of the company's insurance policy.  Normal policies have the exact definition of disability in them so you know exactly what evidence you have to produce to claim disability.  Mine didn't but that is another long rant about the arrogance of a research facility.
5. Keep things private.  Don't announce things on Facebook that would make the insurance company think you can function normally.  They will ignore the fact that you spent the next week in bed for that one night of fun.  Ask your friends not to post pictures of you on Facebook for the same reason.  Just because you have all of your privacy settings in place doesn't mean that your friend does.  Their photos of you might be in the public domain and if they tag you your party night is now out for all the world to see.
6. Don't do stuff in public that goes against what you are claiming.  They will hire private investigators.  It is cost effective for them to catch you carrying a grocery sack into the house.  Again they have no idea that you collapsed in a heap and had to sleep three hours afterwards.  All they know is that they have a photo of you carrying groceries when you are claiming that you can't lift a pencil.
7. Write a letter to the insurance company requesting all documentation of your claim including why they rejected your claim.  You have a right to these documents under ERISA law and I copied and pasted the law into my request letter.  While they didn't send me everything I requested I did get a lot of documents that helped me assemble my appeal.  BTW, there is a fine that can be imposed upon the insurance company for not producing these documents but that wouldn't come until the court case level of appeal.  Feel free to use the following text:

"Please mail me the following documents:

1. All documents used to decide the claim.
2. All documents rejected to decide the claim (clearly marked)
3. The clinical criterion used to decide the claim."

My appeal packet included:

1. Every thing I sent to SSA.
2. All the new clinical notes and test results.  We did leave out the stuff that didn't help my case such as the neuropsych report that claimed I wasn't that sick and I should have no trouble working and any documents that referenced that report.  We included the stuff about my twisted ankle since they used that in their rejection letter.  We used a document that clearly stated I stepped in a rabbit hole in my backyard.  Why the hell they take a nurse's notes over my word is beyond me but like I said medical documents become gospel even if it is self reported.
3. Affidavits from my primary doc, my CFS doc and my chiropractor all stating how sick I was, if they considered me able to work, diagnosises (sp?), and potential dates of symptom resolution (which for CFS is unknown)
4. Affidavit from me detailing symptoms and how CFS affects my ability to sit, stand, walk, carry things and perform my job function.  This took a week of back and forth with my lawyer and was almost 11 pages long when we were done.  We tried to capture everything.
5. Letters from my shrink.  She was very careful in stating that my depression was secondary to the CFS and NOT the cause of it.  Since the CDC has depression as an exclusion for the CFS diagnosis, her wording was critical to avoid the insurance company turning this into a mental health claim rather than a physical disability claim.  I did NOT send clinical notes.  My shrink and I discussed this at some length and neither of us wanted the notes released.  They were both too personal and they didn't have a lot to do with my claim.  Of course the insurance company did request them and my lawyer interceded for me since I was being slightly irrational and irate about the request.
6. All the FMLA (family medical leave act) forms my doc filled out for my work.  This again varies from workplace to workplace.  Mine happened to have a form.  My doc used it for both the three months of leave allowed by federal law and also as medical proof that I needed to take my full six months of sick leave.  This is the documentation that the insurance company failed to ask for and my company failed to provide to them.
7. The letter of approval from my work for FMLA leave and the email of approval from HR for short term disability.
8. My application for a handicapped parking placard.  My doc had written down a diagnosis of CFS on the form.
9. The letter from SSA that said they considered me fully disabled and that I was eligible for full benefits.  The fact that I was awarded my claim on my first try worked to my benefit.  There was just a court case in CA where a CFS patient won SSA but was turned down by LTD and the courts came down on his side since the SSA is considered the authority on these matters since they are supposed to have more stringent guidelines than the insurance companies.  In other words, if the government considers you fully disabled then you are fully disabled no matter how much the insurance companies bitch and moan.

Well, I'm sure I've forgotten something: my LTD packet was 3" thick.  I've captured the most important bits.  

Here is a website that I found incredibly helpful:

http://www.masscfids.org/disability

make sure you go through all the sublinks since this is chock full of information

Here is another treasure trove:

http://www.cfids.org/resources/legal-issues.asp

These people also answered some of my questions when I emailed them:

http://www.advocacyforpatients.org/

Of course there is also the SSA website:

http://www.ssa.gov/pgm/disability.htm

Good News

Finally right!?!

I just received news that my long term disability came through.  I am going to get 60% of my old pay retroactive to December 1st, my health, dental, life and pill coverage reinstated and my work will start to put 10% of my old pay rate into my 401k.  I am so psyched!!  When I got the news I was jumping up and down, banging on the desk and yelling "yes" at the top of my lungs.  Of course this only lasted a few seconds until I had to lie down on the couch from all the excitement.  But YAY!  I was actually out of breath when I managed to call my husband :-)  Gotta love CFS.

Medical Angst

I had blood work done on Wednesday.  My doc has been following my cholesterol with great interest since before I got CFS so it was time for my six month check up.  I asked him to also check many of the vitamin/mineral levels as well.  Good thing I did.  Turns out I've overloaded on Magnesium and I only started it a few months ago.  This is why I didn't publish the list of supplements that my CFS doc put me on.  I don't want to give anyone ideas.  

The past couple of months people have been sending me links to all sorts of protocols for FM and CFS cures/aids.  None of them tell you to get blood tests first to see if you are actually short on any of these things.  Most of the literature I've read said that CFS/FM patients have a magnesium deficiency and indeed my blood work in March did show one.  My doc put me on 1000mg/day which I've been pretty good about taking.  My test this week showed a blood level of 3.1.  It is supposed to be between 1.6-2.6 so I've taken too much for too long.  I'm now stopping my magnesium pills.  The moral of the story is get tested and only supplement if it is indicated!!  Protocol be damned.  You can get just as sick from taking too much of some of these supplements as from having too little.

My B12, which was deficient in November, is now up to a healthy 784.  The normal range is 211-946.  There is some debate that it should be even higher but I haven't seen anything definitive yet, so I'm happy with my numbers.  I'll probably keep taking the B12 but cut back to once a week instead of daily.  That way I have a nice maintenance dose.  Mind you these are large dose sublinguals I've been on 1000 umg/day.

My iron level is back to normal so I just have to check with doc if I should stay on the supplements or stop for a while.  Maybe I'll skip a few days between doses or do once a week like the B12.  Iron is another one you don't want to take too much of like the magnesium.

Glucose, HDL, LDL and liver tests were all normal.  Woohoo!!  Something is normal for a change!

Now the mystery number and the reason for my angst today:  triglycerides are 309.  Normal range is 50-150 so I am considered in the high range.  Apparently there is a 'very high' range but I'm a couple hundred counts short of that category.   Why is this??  I don't eat crappy?  Has my thyroid gone on the fritz again?  I had several weeks where my hair was falling out like mad and I've suddenly gained seven pounds.  Okay, maybe it was that suddenly but still.  I'm still eating about the same I think.  I've had a hell of a stressful month this past month so I might have had a bit more chocolate than is normal for me.  Doc wants to put me on meds for it but I think I might ask for a check on my thyroid to make sure it is okay or gone wonky again.  Maybe I should contact my endocrinologist and see what she has to say.  

Things are finally calming down in my life but my energy level is worse than ever right now.  I can't seem to catch a break where I can rest for long enough to do any good and make progress.  It has been more of a one step forward and two back kind of thing this year.  I just start doing a bit better and then something happens: restrictive diet, graduation, hubby threatening to leave, cockroaches.  I'm so angry and frustrated.  I already had a good cry today.  

I wish I had enough money that I could get hire someone to cook, clean and run errands for me so I could concentrate on getting better.  Holey crap.  I want a few months off all house duties.  I need to do nothing for a while.  It is bothering me that my energy envelope is getting smaller and smaller.  I've been getting worse this past month not better.  It is scaring the crap out of me.

I need to put together an action plan.  Lay out what food and supplements I should be taking.  If I get my LTD approved maybe hire someone to run errands/cook.  Hubby wants nothing to do with food and it is beginning to look like I'm not going to be able to cook much for a while.  I'll have to talk with the kid and see if I can get him to cook for a few weeks.  I can help but I need to put someone else in charge of the kitchen for a month or so.  Although I've been sick I've still been the one putting together grocery lists, keeping track of food related inventory, nagging people to go out and buy food, doing the prep and often the cooking itself.  I've also been doing the odd bit of cleaning here and there.  The stove has been my responsibility to keep clean.  Doesn't matter that someone else spilled spaghetti sauce all over it or pancake mix, it will sit there for days until I clean it up.  Plus I'm trying to keep peace in my house.  I'm trying to make hubby happy or at least less angry.  If I manage to get food on the table then he is easier to manage.  OMG, I want to quit.  I need to quit.  I need to stop being a housewife for a while.

Why is it that I'm the one that is sick and people still expect me to do stuff?

Cockroach Castle

Okay, I lost it the other day.  I hate HATE cockroaches!  About 25 years ago back when I was poor as a church mouse I used to live in a nasty apartment in Holyoke with my old college roommate.  The building owner was a scam artist.  He purchased apartment buildings collected the rent and didn't pay the bills.  He would purchase several buildings in the same location and then skip town with all the rent money.  In the meantime plumbers would quit in the middle of jobs, no one would come to pick up the trash and eventually the cockroaches would move back in.  It was the roaches that drove me out of there.  I didn't care that we hadn't paid rent in months.  That the place was free until the bank sorted out the ownership.  There were cockroaches crawling in my hairbrush and you had to turn the lights on so that you could safely traverse the apartment at nighttime without stepping on the little bastards.

Well, I guess after a year of the housecleaning being left to my husband and teenage son the roaches decided that my house was a nifty place to set up shop.  Probably has something to do with the piles of dishes that sit on the counter for days on end.  I do have a cleaning service that comes in once every few weeks to do the heavy work: mopping the floors, vacuuming and cleaning the bathrooms.  I would hate to think the level of filth I would be living in if they didn't come.  However, since I lost my income we had to cut them back to once every three weeks instead of once every two.  Guess what?  We are being over run by roaches, ants and spiders.  Gross!!

I sent the kid to buy traps.   By observing the ants I figured out their hidey hole and with strategic placement of three traps, two inside and one outside the house I managed to get rid of them.  The roaches are another story.  I have had four sightings and three kills over the course of one month.  I have managed to identify them as American Cockroaches, one of the easier breeds to eliminate.  So two weeks ago hubby set out traps and I read up on the little buggers.  Guess what?  You have to clean all the counters off every night, take up all the pet food, take the garbage out every night and do all the dishes.  Yeah, like that is going to happen around here.  The dishes are basically a game of chicken between the guys: lets see who can out wait the other.  The first one that blinks looses and has to do them.  They can sit on the counter for DAYS.  ICK!!  The food is so crusted on the dishes the dishwasher can't get the crude off and I end up rewashing stuff.

Three days ago was my forth sighting and my third kill.  I couldn't stand it anymore and I went on a cleaning rampage.  I threw everything I could get my hands on in the dishwasher.  The kid and I did two loads before hubby made it home.  I had scrubbed down the kitchen island where I do food prep and dismantled the toaster oven and stove and washed all of the parts.  I also hand washed pots and pans that I couldn't squeeze into the washer.  My son couldn't believe how much work I had done.  When hubby came home he helped empty out the lower cabinets in prep for roach dust application.

By dinner time my neuro symptoms had set in.  I had the headbobbing and limb jerkies.  I was going to pay for my cleaning fit.  Yesterday I couldn't stay upright for more than an hour.  I went to bed and slept twice.  I needed help walking around the house.  I kept having neuro symptoms just when I thought I was doing okay.  Today I went to bed and slept for two hours after only being up three.  I am doing a bit better.  I haven't had any neuro stuff today.  I am feeling irritated though.  Aggravated.  Agitated.  I want to move.  I want to annoy someone or something.   I want to DO something.  My brain keeps going over lists of things I want to do: blog posts, cleaning out kitchen drawers, eat, run, skate.  I can't settle down to watch a movie or TV show or read.  I keep page hopping on the net.  Everytime I get up though waves of dizziness over come me and I have to grab something to steady myself.  I'm tired but I can't get to sleep.  I'm so frustrated I want to SCREAM!

All this because of a few cockroaches.  ARGH!!

Bloody Blogspot

I wrote this nice long post last night.  It had lots of embedded links in it to some great CFS articles.  It took me an hour and a half to write.  By the time I was done it was after midnight.  I guess that Blogger decided to work on their system and I couldn't post or even save my work.  I've copied the text to Windows notepad but it is going to take some work to attach the links again.  So for now I'm just going to say "Damn You Blogspot!!  The least you could have done was warn me that the system was going down!"  This is seriously making me consider switching to Wordpress.  If my brain were up for learning something more complicated I probably would without hesitation.