This is my TI (terminal illness) diary:

Oldest entries are at the bottom/newest entries at the top.

5/21/08: We got a call from our attorney in March about a scheduled settlement hearing at the Federal courthouse in Jeff City.  We went up the day before the hearing and stayed the night in a motel because the weather was supposed to get bad.  We made it to the hearing.  I went in the wheelchair, as the attorney told us there would be a lot of walking.  It is a fairly big building, and it's very old.  They're trying to get a new Federal courthouse, but they've not had any luck so far.  The money keeps getting appropriated for other things.  Regardless of all that, there was an attorney from Phoenix there for the insurance company.  The "settlement offer" that they made was kind of a joke.  Even our attorney was just speechless for a minute, and that's a hard thing to do (make him speechless).  We turned down the offer and left it in the hands of the judge and the Lord.  So we will see what happens.  We went to our annual April campout as usual.  The garden is all in now also.  He made the gardens a lot bigger this year.  Hopefully, he'll be able to sell produce at the farmer's markets this year.

12/28/07:  Okay, well, I haven't been any better about updating the diary.  I've been thinking a lot about the part of being disabled that requires "adjustments".  LOL  There's a commercial on TV out now.  It says, Okay, you're not the person you were before you had RA.  So, who WILL you be?  RA or not, it's an interesting question for any disabled person, I think.  So, who will you be?  When my doctor first told me I should start using a cane, it really made me angry.  I did not WANT to use a cane.  I was really hung up (for some reason) on the idea that it was a visible symbol of being disabled, and I didn't need it anyway.  I'm not an old crippled up lady.  Well, using a cane was better than the alternative, which is falling down.  So, I began to use the cane.  I have several canes, but the one I like the best - for balance - is the quad cane, the one that has 4 feet and will stand up by itself.  I mean, it's a pain in the neck to try & find a place to balance a regular cane - for starters - when you just want to use both hands for a second, or trying to get food on a plate in a buffet line, or in the grocery store.  The quad cane helps me maintain my balance also.  We have 4 (count them, 4) fold-up walkers, with & without wheels, for use around the house and out in public when I get to the point of needing them.  We have 2 or 3 bedside "commodes".  and then the wheelchair got here.  The electric wheelchair was delivered by a man in a van who ran it right up his portable fold-up ramp, across the porch, and right smack into our living room - where it sat for 6 months, as I stared at it and hated it.  Not that it did anything wrong, mind you.  It has a beautiful shiny red base.  The seat is comfortable, padded, even has a lumbar support and a seatbelt.  The controls are on the right arm, which is good, because I'm right-handed.  They are easy to figure out and easy to manage.  I just hated what the chair represented, really.  To me, it was like the grand statement of "this person is disabled".  I think having so much trouble with the social security dept, and the disability insurance companies had somehow put it in my head that being "disabled" is a bad thing...  or that it somehow made me a bad person?  I don't know.  I have no clue as to why I was so angry for so long about things that are beyond my control anyway. 

Regardless..  My husband is a very wise man.  When I would have just stayed home forever, he made me go out to the grocery store with him, out to eat, just out and about in general.  He didn't physically pick me up and put me in the vehicle - but he has his ways.  Last January, we traded our Blazer for a van, because there was just absolutely no way to fit that electric wheelchair in the Blazer, no matter what he did.  After that, we had to purchase a set of fold-up, suitcase type ramps to get the chair in & out of the house and into and out of the van also.  Ok, got those, and we're all set.  I still wasn't thrilled about using the chair.  I am, however, a soda pop junkie, I guess.  I don't drink caffeinated soda, so it's not that.  I usually drink a non-caffeinated lemon/lime soda pop, and generic is fine with me.  My husband said, if you want food, you'll go to the store with me.  That really didn't bother me as much as, Well, if you want your soda pop, you'll go to the store with me.   Ok, he got me there.  Shopping for food, even just as in helping him shop for food, or mainly keeping him company while he does the shopping, it wears me out.  The drive is hard on my joints, and I am very tired and hurting by the time we get home from shopping.  But, really, you have to get out once in a while.  I never just took to the bed and said, Ok, I'm just going to stay here.  While we are in town for shopping, we usually go out to eat also.  It does help to be able to get out and about sometimes, rather than just staying home and hiding out. 

Now, the chair was another thing.  Ok, I made up my mind that I can & will help with the grocery shopping.  Take the chair?  No way.  I finally got to the point where I WILL utilize the electric carts that many stores have now - because it makes shopping a whole lot easier and less tiring for me.  Because I get to do more, see more, and be more aware of the shopping itself and less aware of how my joints are screaming, my feet are hurting, etc.  My husband kindly encouraged me in this, and once again, he was right.  But take that shiny red chair?  I had a million excuses as to Why Not? 

Oh, it's too much of a hassle to load it and unload it, especially if we're going to several places.   Um...  a lot of these stores don't have a handicapped spot that will allow the ramps to come out to get the chair out.  (which is true, a lot don't).  This usually consists of a parking space with an extra space beside it with lines painted in it.  The lines mean that people aren't supposed to park there, because it's supposed to be kept clear for wheelchair ramps or a wheelchair lift in a van - but people park in those lines anyway (because apparently they've never had to use the spot for what it was intended for).  Sigh..  Anyway, I had all kinds of excuses not to use the chair.  I used my cane at the annual Bakers Creek picnic in May - and saw another lady there in an electric wheelchair who got stuck briefly in the mud.  See!  I said, it's a good thing I didn't bring my chair.  Sadly, though, I didn't get to see all I wanted to of the festival before I got tired and had to go sit down.  I never even went into the seed store, which is a first time event for me at Bakers Creek.

Then came time for the semi-annual Jacob's Cave swap meet.   I've stayed at home the last 3 times he has gone, and let him go off by himself to this event.  It is 80 acres of campgrounds, and all the spaces marked off for camping and vending.  It is 80 acres of the biggest yard sale, rummage sale, craft fair, flea market, and farmer's market you ever saw, with pets & small livestock sales thrown in.  Oh, the bargains!  Of course, I have always been a bargain hunter.  Rummage sales, yard sales, flea markets, thrift stores, auctions, and you name it, I have loved them all.  I still went with him after I got to be disabled, but the area I could walk and see became less and less with each trip.  When it got to where I could only see about a half-block of it, I sort of gave up on it and sent him off to see it and sell birds by himself.  He did try to help out each time by coming up with something.  We took our old riding lawnmower a few times, took the mowing deck off, and rode around on it to see all the stuff.  After it became non-functional, well, that was the end of that, I guess.  With the swap approaching in June, he started making little comments about wanting me to go with him to the swap.  It's just more fun when we both go.  He said (innocently enough), You *could* take the wheelchair and see a lot more that way.  I said, Oh, I think the batteries would die before I could see it all.  He replied, No, the manual says it's good for up to 25 miles.  I think you could see all you wanted in 25 miles.  If not, we'll know at least one person there with an electric spot and could recharge it overnight.  Well, he had me there. 

I thought more and more about really missing going to that swap meet twice a year.  And I really, really wanted to be able to go again.  So, I said Ok, we'll take the chair.  I can't do tent camping any more, my bones just won't handle it.  Our pull-behind camper is still out in the yard, but our son-in-law had backed his car into it and tore some of the aluminum siding loose, so we couldn't pull it down the road like that.  Fortunately, though, our van has a back seat that makes down into a pretty good-sized bed.  So, we were all set for camping in the van.  This is another thing I've always enjoyed but seemed like I was doomed to not ever be able to do comfortably again.  Not so after we got the van.  It is highly comfortable for camping.  :) 

Another lady friend of ours, who is also disabled, met us up there and brought her little tiny car.  I went around the swap in the wheelchair several trips, just partway around.  It took me a while to get the hang of running it and making it go where I wanted to go, but I did finally get used to it.  And you know, nobody stared at me, nobody pointed fingers, nobody even noticed - or cared.  All those excuses, for nothing.  hehehe...  I did go around several times with our friend in her tiny car too.  We went back in October, and I never even hesitated about going or about taking the chair.  It was like the cane - which to me, like I said, was better than the alternative of falling down.  The chair allows me to do things I would not otherwise be able to do, like get around the big swap meet.  So making up all those excuses was just silly in the long-run.  Why are we humans so worried about what other people think, or our appearances, or accepting that things are just the way they are?  Ah, well, live and learn, I guess. 

We also had a male friend come up and join us, who is also disabled.  He had a little scooter that we hauled up there for him, and the guys made extremely good use of that scooter for going and looking around the place too. 

My husband knows me well.  He knows when to push me into doing something that I should be able to do, if I will only accept that there are alternative ways to do it than what I used to do.  He and I went to the October campout, and we didn't take a thing to sell.  We just went to camp and shop, and we had a great time finding bargains.  Finding other ways to do the same things is something we just have to learn to do, I think.  I can't get in and out of the tub by myself, but the shower works fine, and I've come to accept that showers are just as good as baths.  I mean, you do get just as clean; and it makes it much easier for me to do it by myself..  There are alternative ways to do many things that people just don't think about.  I'm learning to look for other ways to do things that I've always enjoyed doing.  Life is a learning process, I know.  I don't know how I could have been so angry or sad as to have forgotten that.   And, in my life, my husband has been very good to me and very good for me.  He will help me do lots of things, but he also knows when to push me into finding a way or helping me find a way to do some things for myself too.  We switched pharmacies not too long ago.  I have come to hate those child-proof bottles, because I couldn't get them open myself.  I signed a paper for non-childproof bottles, but most of the time they would forget that it was on file and give me the child-proof anyway.  The new pharmacy bottles have a lid that can be pushed up or down to make them child-proof or not child-proof.  He made all the lids so I can open them by myself.  This doesn't sound like a big deal, but it was a big deal to me.  He got a big hug and a kiss too for that.  :)  Until next time... 

5/22/07:  Well, it's been a very long time since I've updated this diary.  My husband pointed that out to me over this past weekend.  I'm still hanging in there.  Our attorney e-mailed the draft copies of the lawsuits he is intending to file against the long-term and short-term private disability companies.  They looked pretty good.  He will be suing them in state court here in Missouri for the money they owe, and for bad faith.  The demand letter he drew up last year was sent, and they sent him a reply (after several months) that basically said, "No, and go to heck".  So, now the plans are to sue in state court for 2 counts, "failure to pay benefits and vexatious refusal to pay claim".  He is positive that we will eventually win, but it still might take 2-3 more years to get through all the appeals, as he is sure they will appeal it after we do win.  I finally got that power wheelchair, last November.  It only took about a year, I guess.  We bought some portable wheelchair ramps and traded our Blazer in for a van in January because the chair would not fit in the Blazer.  I hate the thought of having to use a wheelchair, but I have gotten it in my head that I will use it when I need to.  I do like the new van too.  It's pretty big, plus the bench seat in the back lays down in 3 sections to make into a bed.  It's actually 2 years older than our Blazer was, but it's in really good shape. 

I've been going in every 2-3 months to have my phlebotomies and my blood work done.  I can pretty much tell when I need the phlebotomy, because I really get a lot more headaches (and they are worse), and I just feel worse in general.  Actually, most of the time, my hubby notices it before I do.  He says that I just get a lot more grouchy and irritable, and then he will say, "It's about time to go in for another phlebotomy, isn't it?"  I do know by now that, when he says that, I might as well give up and call to make the doctor's appointment because, if I don't, he will keep reminding me until I do. 

In November of last year, my mother-in-law, who was fondly known as "Gramma Cookie" around here, became ill.  She was finally diagnosed in January 2007 with lung cancer.  She passed away here at home on March 23, 2007.  There is more about that in the homesteading diary.  I miss her with all my heart, but I know she is in a better place and is now in no pain.  This is the first time in 10 years that we have ever lived just the two of us by ourselves.  We're adjusting okay, though.  ;)  We've been here at the new place for almost 2 years now.  Our gardens are all in for this year now, but there are still some flower bulbs, seeds, and plants to get planted.  I won't say WE planted the gardens, because HE did most of the work.  I helped plant a few seeds and a few plants and that was about it.  I do love being able to pick fresh lettuce & tomatoes and make a salad, though.  We have 6 rows of sweet corn in this year too, along with a LOT of other stuff.  I will really *TRY* to be better about keeping this diary updated in the future.

8/15/06:  I called the place about the wheelchair.  She said it would be better to wait till next month when my Medicare kicks in.  That way it will get approved right away, and I won't have to wait.  I will still have waited 10 months for it even at that.  My birthday turned out to be a good day.  It was quiet, and I had a good day.  I got some neat stuff too.  A new outfit that I love, a new shirt, some pajamas, and 2 garden things on sticks - a bee & a hummingbird.  Plus some really cute cards.  I wasn't enthused about having a birthday, but it turned out well.  Drone barbecued supper on the grill, and that was good too AND I didn't have to go anywhere.  The attorney is in the process of drawing up a demand letter for the disability insurance companies now.  He said that, they do not have a chance of fighting it now that SSA has approved me.  If they don't pay, he will sue them in federal court.  If he has to take them to court to get my money, he will also sue them for "bad faith" in state court. 

7/26/06:  I'm still here.  The SSDI Appeals Council finally made their decision in May (after I contacted my local congress woman and she made a congressional inquiry as to why my case had been there over twice as long as their "average" length of time for appeals).  The decision was fully favorable.  They mailed it to our old address, and it was forwarded.  It took me 4 phone calls to get the address changed, finally.  We saw the attorney this month, and he says that we will now go after the disability insurance companies with a demand for payment & 30 days to come through or be sued in federal court.  But, after 2 long years of waiting, the Social Security Administration has finally, finally got my disability set up.  We used the back pay to pay off a bunch of bills and bought a used tractor & some implements for the farm.  We also got a few things for us & a new TV for Gramma because her old one quit working altogether.  I actually got my very first "regular" check this month too. 

With all that, I'm still feeling pretty tired and not great.  Partly, I'm really just sick & tired of being sick & tired all the time.  I feel guilty a lot for not being able to do all the things I used to do or even for not having the same interest in things that I used to be interested in.  My birthday is coming up next week.  I used to love my birthdays, and age has never bothered me.  I just can't seem to get overly enthused about this one though, for some reason.  I will be 49 years old.  My husband did find me a quad cane here a while back at a reasonable price and bought it for me.  It definitely helps my balance & takes some of the stress off my right hand & shoulder when using the cane.  We also have found 2 wheeled walkers now.  I hate using the cane, and I'm not looking forward to having to use either a walker or a wheelchair.  I'm still waiting to hear about whether or not the insurance company has or has not approved the prescription for the wheelchair.  You would think the company would at least keep me informed.  I would call them, but I'll have to find the phone book I wrote their phone number down on (or in?). 

I think most all the kids have officially "visited" us at the new place now.  Bean has been here with Draven & Glenn.  Bud was here to visit us one day, and we weren't home.  When we went up to the lake to visit the doctor, we picked up Katy & Christopher and brought them home with us for 12 days.  I had to go back to have a digitalis level drawn - so we took them home when we went back.  It was 107*F that afternoon in Osage Beach.  Crazy.  It has been a pretty hot summer, that's for sure.  The gardens have been going great.  We have eaten tons of zucchini, lettuce, radishes, turnips, turnip greens, lots of tomatoes, green beans, banana peppers & green peppers for weeks now - and even our first batch of sweet corn yesterday.  We ended up with 3 new litters of puppies born in May.  We have 3 pom pups left and 2 Cavalier pups, but someone is coming to look at one of the pom pups tomorrow evening. 

Well, I guess I will go and TRY to get some sleep.  I think I always feel worse in the night time when I hurt and can't get to sleep.  Hopefully, I might get perked up and in a better mood soon.  I can usually handle the physical disabilities (mentally, I mean), but I hate being depressed on top of everything else too -- and I'm really not sure if that made any sense to anyone but me.  ;)

4/18/06:  Sorry it has taken so long to update this again.  I figured it was about time.  We ended up selling our home & property last year and paid off the mortgage on that homestead and bought another one.  It took months to pack up everything, and we ended up leaving lots of things, giving furniture and all kinds of things away so we wouldn't have to pack it or move it.  Plus we didn't have room to take it all and nowhere to put it if we did move it.  As of this date, my SSDI appeal has been at the appeals council for 15 months (with an "average" time of 10 months) and mine is supposed to be an "expedited" case because I have a terminal illness.  We sold our homestead and the 60 acres we had there, so we could avoid foreclosure and buy another place outright.  We ended up with a 40-acre homestead rather than a 60-acre homestead, because that is what we could afford and not have to make mortgage payments in the future.  We moved most of the community of family with us.  I did have to give up my big farmhouse that I loved - but it had gotten to the point where the stairs were very hard for me anyway.  Trying to move a 2-story house with basement & screen porch, 2 carports, a barn, and a 2-car garage into a 12x60 mobile home and 24x24 shop building was fun (not).  This is the reason we ended up giving so much stuff away before we moved.  It still took 2 big U-Haul trucks and numerous trips with pickups & trailer & the Blazer to get it all done.

I was recently hospitalized for another small embolic stroke/TIA, caused by a blood clot.  I've been home 3 days now.  There is still some weakness on the right side, but they are hoping that will eventually go away.  The speech therapist gave me some exercises to do to help with the weakness in the right side of my face, but she didn't give me any suggestions about the right arm or leg, other than to continue to use the cane for balance & wait on the approval on the wheelchair prescription.  My hematocrit had gotten back up to almost 51, which is what caused the blood clot, the doctors there believe.  Doc F. was upset about it beforehand at my last visit there with him, and I'm sure he will be even more upset with Dr. T. now than he was last time I was in his office week before last.  The hematologist in Columbia (Dr. T) had wanted to hold off on the phlebotomy treatments until my hematocrit got back up over 50, so he could repeat the blood volume study that Dr. G had done while I was in the middle of 8 weeks of hemorrhaging back in 2004.  (wrong time to do the study, of course).  Even with the hemorrhaging, my blood levels were still well above the amount needed to diagnose for polycythemia - but I found out afterwards Dr. G does not have any patients with polycythemia.  He had made the comment on one of the consult notes that, "If the patient ever had polycythemia, it has apparently gone away now".  And this guy is supposed to be a specialist. 

Dr. T. told me polycythemia doesn't go away, the blood counts go up & down, but it doesn't go away.  He's still fairly wishy-washy though, because regardless of what he told me in person, then he wants to repeat this study "because his diagnosis was called into question".  Why can't he just say, "The other doctor is wrong.  Based on the testing I have done, this patient has polycythemia."  Nope, guess that would be too easy.  Instead, he allowed me to go without the medical treatments I need in order to let my blood counts continue to rise to the point where I had another stroke for the sake of repeating this expensive test.  Doc F. calls it "the pissing contest" between the specialists.  What sense does this make?  In my mind, it seems like doctors are more & more afraid to commit themselves to a specific diagnosis or even to commit themselves to saying, this patient is disabled, she has a terminal illness.  He will say it to me, but would not put it down in the same way on paper?  OR, you get doctors who have a "pet" diagnosis, and every patient they see falls into that category.  OR, there are the docs who take the easy way out, they find something that sort of "fits" your symptoms - slap that label on you - and never investigate any further.  I think fibromyalgia and chronic fatigue immune dysfunction syndrome are both diagnoses that are over-used in this manner.  I still wonder if there is something else going on, whether it might be multiple sclerosis or something they've not bothered to investigate for.  They have given me these labels, why look any further?  In the meantime, I feel worse & worse.  I have gone to using a cane to walk with, and Doc. F. prescribed a wheelchair for me - which I am still waiting on.  Medicaid told me it could take 3-4 months to get an approval for that.  Guess if I get to the point where I need it on a full-time basis and they still have not approved it, I will just have to stay in bed waiting for it.

On a good note, I may have found a hematologist/oncologist down in this area (still over an hour's drive away) who specializes in polycythemia and hemachromatosis.  Keeping my fingers crossed.  "Specialists" who don't know what they are doing or anything about a particular disease should just say so & refer a patient elsewhere OR do the research necessary to know what they are doing - rather than just dabble into it and end up screwing up a patient's medical records.  The doctors at the hospital where I was a patient definitely agreed with the diagnosis of polycythemia - and did a phlebotomy before I left there to go home. 

I am still waiting on the SSDI  appeals council to make a decision.  My case has been there for over 15 months now (although they claim their average wait time for that is 10 months, and mine is supposed to be "expedited" because of the fact that I have a terminal illness).  My attorney says we will wait till we have an approval from SSDI before we go after the disability insurance companies.  He feels that once SSDI approves me, the insurance companies will fold.  The last denial was so ridiculous.  It stated that their physicians & vocational experts (who have never seen me, they are just paid to figure out reasons to deny people) felt I could still do my previous job with the help of a sit/stand workstation and - if necessary - I could put the foot pedal up onto the desk and run it with my hands while typing.  Not sure how they expect me to type and run that foot pedal with my hands and use my cane to balance myself while standing for this alternating sit/stand position workstation.  Of course, nobody says they have to make sense, they are just paid to figure out ways to deny the claims.  They never bother to think that they are ruining people's lives financially or that they are denying us what we paid thousands of dollars for in order to protect our financial futures.  How do these people sleep at night, I wonder?  I wish someone would expose to the general public what these companies are doing to people's lives.  Complaining to the state Dept of Insurance did no good.  Their answer was, "It is not against the law to deny claims".  They didn't even bother to look at the fact that, it IS against the law to deny claims on an arbitrary basis and not using all the medical evidence. 

I type these things, these entries for this "terminal illness diary" and they have gotten farther & farther apart.  I hope folks realize why sometimes.  It's hard for me to sit and type at all for long amounts of time.  So, I end up typing for a few minutes, going to do something else, typing for a few minutes more..  It might take me days to type an entry like this one that I am typing now.  Thank goodness for Word.  I can save it each time, then just copy & paste when it is all finished or when I am just tired of working on it.  It took me 2 weeks to type a letter to one of the disability companies.  My husband & our adult daughters helped with the actual composition of the letter and the girls helped me type it by doing most of the actual typing - yet one of the docs reviewing my records used the idea that I clearly could sit and type this letter as "proof" that there is no disability.  Obviously, because I send them a letter that makes sense, I must be lying when I say I have bouts of confusion or that I can't sit and type for 8.5 hours a day anymore.   I'm sorry, I'm sure everyone has heard me rant enough about these insurance companies.  It still just irritates me to go from making $30+ an hour to trying to live on less than $300 a month.  PLEASE, before you send e-mails or sign the guestbook, I am NOT in any way, shape, or form soliciting donations or financial help.  We manage to manage, because my husband happens to be an excellent manager and because the Lord has always seen us through.  I *would* still love it if someone exposed these disability insurance companies for the rip-off, scam artist, legalized THIEVES that they are though.  Sigh..  Ok, way more than enough about that.

Off to another topic, Bud & Jeanette came to visit & brought Brighton & Alyssa last Saturday.  Had not seen these 2 grandbabies for a while.  Gosh, they are getting so big - and they are gorgeous.  Chris & Kat were here over Thanksgiving time, as were Tricia & Eric, although they never managed to be here at the same time.  It was good to see the newest little grandbaby, Kierra, while Chris & Kat were here - and it was good to see Katy & Christopher when Tricia & Eric were here too.  That leaves only Bean who has not made it down to the new place yet.  All of our adult kids have loved the place so far.  It does have lots of advantages that the farmhouse didn't.  It's more secluded.  The driveway is half a mile long, and it's a private drive.  So the little ones can play without worrying about being run over, as we are no longer on the county roads as we were before the move. 

4/1/05:  We went to Columbia yesterday for Lee to see the dermatologist about the bump on his nose.  He really only went to humor Doc F.  BUT, we found out that the bump is NOT skin cancer, so that was good.  I did get kind of sick on the way up there, and riding made my hip and back hurt.  I had to lay the seat back and try to sit sort of sideways and close my eyes so as not to be sick.  We parked in the parking garage at the University Hospital.  Went all the way in to the Info desk at the hospital, only to find out it was the other direction and across the street from the garage.  So, we had to walk back through the whole garage, down the stairs, & across the street.  When we came out, we had the option of walking up all the flights of stairs or all the way back through the garage to the elevators.  I knew my knees wouldn't take any more stairs, I was about done in already.  So, Lee said, "If you walk to the garage entrance, I'll walk up the stairs, grab the Blazer, & pick you up at the entrance.  That way you don't have to do any more stairs."  Sounded good to me.  Somehow, I got myself turned around, and walked the wrong way.  I got all the way down to the next level, but there was no exit from that level.  I started to sort of panic and was feeling pretty confused.  I turned around & walked back to where I started.  When I came around the corner, there was Lee in the Blazer.  I was so glad to see him!  I really don't know how I got turned around.  After I was in the Blazer, I noticed all these big signs pointing in the RIGHT direction, all saying, "Exit This Way".  I don't remember seeing ANY of the signs until after I got in the Blazer, like they all just appeared at once.  It was weird.  That kind of thing seems to be happening more often to me, and it's always scary. 

Between sitting on the long ride and doing that one flight of stairs (up and down both), I was so stiff & sore in my hips, back, & legs when we got home that I had to take TWO pain pills yesterday evening.  I tried one but it seemed like it wasn't doing anything, so took another one.  Even then, I still had a rough night.  Woke up around 4:30 and had to get up & move around.  Walked around & stretched a bit, then went in the guest room to read.  I tried to go back to sleep but didn't actually get back to sleep until around 6:30 or 7:00 a.m. - then woke up again around 8.  I took my pain pill but still couldn't manage to get out of bed until around 9:30 a.m.  I'm really glad I don't have bladder problems.  It would be terrible to wet the bed because I literally can't get myself out of bed due to pain until after the pain pill kicks in every morning.  It's bad enough to have to take the pain pill just to be able to get out of bed and get down the stairs. 

3/30/05:  Well, we've been denied on appeals by the long-term AND short-term companies, with yet more of THEIR physician reviews.  Our lawyer has been difficult to get ahold of.  We even went to his office and sat for 2 hours outside waiting for him one day, and he didn't show up.  He said he got held up in court.  I sent him an e-mail, and we'll see how long it takes for him to answer that, if he answers it.  The latest physician review again did not even notice the last visit with the eye doctor, which stated that I was blind in the right eye.  That makes me mad.  He also said he felt my subjective symptoms were "exaggerated", which also makes me mad.  How can they possibly decide something like that about a person they have never even laid eyes on?  He charged them $250 per HOUR, over $3500 total, and didn't even do a thorough review of all the medical records.  He picked up on an error that involved a supposed history of COPD, which I've never had a history of, yet didn't pick up the last eye doctor appt that said I was blind in the right eye.  They've spent more money to deny me than what they would have spent paying the claims.  It is SO exasperating.  Also found out that Doc F's office sent NONE of the records they were supposed to send in this last round of faxes.  ARGH!!  Now, if we want the evidence introduced into the records, we will have to re-appeal instead of taking them to court. 

3/8/05:  I have always gotten mildly depressed around January. My mother has done the same thing all of her life. Her doctor called it "SAD" or seasonal affective disorder. He advised a tanning bed and/or sunlamps. She moved to Florida, and now this affects her MUCH less than it used to. I have never been affected by it as badly as she has, but I always felt sorta "blah" after the holiday season was all over and usually felt that way until around March, when I would get excited over gardening and the nicer weather. This year, I started feeling "blah" before Halloween! It continued to get worse through Thanksgiving, Christmas, and New Years.

I felt stuck, physically and emotionally. I felt useless, worthless, un-needed, etc. Now, I have for YEARS had a very deep distrust of doctors in general, along with psychologists, psychiatrists, and medications. I don't like to take pain pills, let alone something like antidepressants! I felt stuck, but I would never have dreamed of asking anyone for help.

Chronic pain is a depressing thing. Dealing with disability and chronic illness is depressing. First of all, there is the issue of - What do I do now? I used to get a lot of my self-esteem and my own sense of identity out of my work. I was one of "the best" at what I did. I was competitive, but my main competition was with myself. How can I do better or faster today what I did yesterday? Now, all of a sudden, my doctor says - You are done. I will not release you to go back to work, not now, not ever. So, go home and take it easy. Oh, and avoid stress.  HA! First, you have the stress of dealing with financial issues, applying for SS Disability or SSI, papers to fill out, interviews, doctor appts, denials, hearings, appeals. On top of that, many of us have private disability insurance through our jobs. It only makes sense, right? They want you to fill out more papers, more interviews, phone calls, doctor appts, denials, appeals, and finally attorneys, and possible court actions. More stress, more depression.

On top of all that, in the midst of dealing with all this other stuff, then you have a personality crisis. In my case, okay, I am not a medical transcriptionist any more. What the heck am I then? I'm a mother, but most of our kids are grown. They don't NEED me like they used to. Because of pain and sleep disorder, I have a very hard time getting out of bed and down the stairs in the mornings to even see the kid off to school, so DH and MIL feed him breakfast, make sure he's dressed, and put him on the school bus every day. So, then I'm feeling guilty because I can't seem to do what's needed to take care of the one child we DO have left at home.

I'm still a daughter, but my mother lives in Florida and has her own life. She doesn't NEED me either. I'm still a sister, but 2 of my siblings live in other states. The only brother I have here lives right next door with his wife and sends me e-mails. :-D He is also disabled. If anything happened to him, I would be devastated (and vice versa) but he doesn't really NEED me. I'm a wife, but DH pretty much takes care of the homestead, along with help from some of our kids at times. MIL does most of the cooking, most of the laundry. Not much housework getting done.

I've probably spent a lot of time feeling sorry for myself (which is really NOT my usual state of mind and never has been throughout my life). I've also spent a lot of time trying NOT to need pain pills, not to ask for them, I have never taken pain pills much. I don't WANT pain pills! Um.. I guess that's called DENIAL. I've also spent time being REALLY ANGRY. Who was I angry at? Hmmmmm.. Well, let's see, I was angry at the insurance companies, the social security department, my place of employment, the doctor, myself, my husband, my kids.. the cat.. GOD. You probably get the idea. I was just angry.

I guess the point of all this is, there comes a point where, mentally, you have to reinvent yourself. I think all of the above feelings & thoughts are "normal" in the situation of becoming disabled. So, you have to work your way through it. (I'm still working on that). You have to accept chronic pain and try different ways to improve it. Yes, I am now on Tylenol #3 on a regular basis AND I have a prescription for Percocet for "rescue pain". I still try not to take them unless I really need them. I have this fear of becoming addicted to them.

I think one of the biggest things for me to work out has been being angry at SSDI and the insurance companies. Although DH said it to me a hundred times, I finally had to get it through my head that it wasn't personal. It is their JOB to try and keep you from collecting this money. Yes, it's your money, and yes, you need it (according to you). However, they get paid to find ways and reasons NOT to give it to you, according to their rules. They are not doing it just because it gives them some kind of power trip, but it's just a job for them and a way to pay their own bills.

I'm still working on this whole thing, still working on figuring out that, although I AM still all the above things, it's okay that I am not NEEDED by all those folks (although it's sort of a blow to my ego that the world really could get along without me. LOL) Really, if they did NEED me, I would just feel more guilty because I couldn't be what they needed me to be. I mean, my DH still needs me, even if not to clean house, cook meals, & do laundry. I do what I can when I can. In the meantime, He DOES still need me to be his best friend. I'm still working on figuring out who & what I am or want to be now. I've realized that I have to actively work on not being depressed or stressed out. I have to actively work to "redefine" me. I have to take the pain pills whether I want to or not, but I can decide how many will work for me, and how often I need to take them to maintain.

Why is it that, when they decide you are now officially "disabled", they don't tell you that you will go through all this stuff in your mind? and that it's okay. I'm learning lots of new things, and that's okay too. I mean, does anybody else get these same feelings? Who do you talk to about it? Or do you talk to anybody about it?

1/30/05: Just a bunch of rambling thoughts in my head, things I wonder about, stuff I want to put down somewhere so it won't be forgotten about, mainly by me. Sometimes at night I wonder if I will wake up in the morning or not. or, if I do wake up, will I be able to get out of bed or will tomorrow morning finally be the day when it's just beyond my grasp or ability to do so. Just trying to take it one day -- or one night -- at a time. I do wonder sometimes how many days - or nights - will be left. I always liked Larry's description of that, "mind-roaming". I guess that's what my mind does at night. Maybe that's why I like to read so much, to keep my mind occupied with other things.

Then, I also wonder how much of this is my imagination, or depression, or how much is real? Like I said, I just get the feeling that there is something they are missing -- but I don't know how to get them to find it. If I know doctors, they will wait until there is some type of definitive "crisis" to even question the way they have defined things to this point in time. The only question is, will I survive the crisis or not? and, If I do survive it physically, will **I** (whatever defines me as me) still be in there or not? I have this pervasive and overwhelming sense of Doom hanging over my head. Then, I have to wonder, is this just a symptom of depression? Should I just give myself a good shake and get over it? Can I do that if I want to? I don't think it's about depression. I mean, that's something I'm familiar with, and it's "dealable". This doesn't seem to be the same crap, but new & different CRAP.

1/29/05:  Well, I've made it to a New Year again.  I wonder sometimes how many more "New" things I'll be around to see.  I've managed to see grandbabies #13 and #14.  :)  Our oldest child is now 27, and our youngest is now 6 and being offered a spot in the gifted program in Kindergarten.  Doctors are frustrating for me, as I sometimes believe they are just as much in the dark as the rest of us.  Diagnosis must be a very difficult thing to do.  I always feel like they're missing something that they just haven't put together yet. 

1/26/05: My right eye has been hurting for several days now. I have a headache above & behind that eye, but the eyeball itself hurts when it moves, like there is grit or something behind it, been fairly clumsy, but I think that might be from the blindness in that right eye. Not sure about that. Have also been choking easily, even on my own spit. Even though my bones & muscles hurt, I seem to have little feeling in my skin in places. Have burnt myself a few times in the past week & didn't even feel it. Just noticed it afterwards. Fingers & hands go numb a lot, as do my feet & toes. Still having muscle cramps, and my bones & joints have fierce aching. Have noticed that I will get almost like electric shocks up & down neck, arms, shoulders, even down into my back sometimes when I just move my head the wrong way. Must be pinching a nerve. The worst thing is heart racing, feeling like it's going to jump out of my chest, especially at night when I'm trying to sleep. I can actually feel it jumping.

12/17/04:  Lee put up the Christmas tree, & we decorated it together with Isaiah.  We also got the Christmas village up.  It ended up at 14 feet this year!  He took some photos for me, and they are now posted.  It took about 2 weeks altogether to get all the stuff ready & put up for Christmas.  It takes me longer to do most anything now, and I always end up needing help on about everything, from opening medicine bottles to brushing my hair.  We won't dwell on those things for right now. 

Christmas is only 8 days from now.  My Mom should be here sometime between Christmas & New Years, so I'm looking forward to that too.  

I wonder sometimes, if people thought this might be the "last" anything, would they act differently?  If your husband walks out the door in the morning, and you give him a kiss every day (or forget some days), if you KNEW it might be the last kiss you ever got to give him, would the kiss be different?  If this is the last time you get to have a conversation with someone, what would you say to them?  Would you be more inclined to say, "I love you", rather than just assume they know?  If this were your last Christmas, would you want your family to remember it as materialistic & all about money, or would you want them to remember it as a reason for families to draw together in love?  Just thoughts rambling around in my brain...  I catch myself thinking about things like that a lot.

12/01/04:  I've been feeling sort of "stuck" lately, just blah about everything.. I think it's mainly from all the stress over the short-term and long-term disability companies, plus the SSDI denial really put the mud on the cake, so to speak. When I went back to work full-time after the stroke, I knew eventually I would get to the point of being disabled at some time in the future. I thought I had things so well planned out and provided for when I bought the private insurance through my job. The insurance is supposed to give you peace of mind in the event of catastrophic illness or injury - and provide you an income while you're waiting on disability to make up their minds... Instead, they have given me mostly stress, grief, and sleepless nights. SSDI is another matter altogether that really irritates me. It sucks. 

After the appeal I wrote to the short-term company, where I ripped apart their "physician review", they are not having it reviewed by another physician. Instead, they are having a "vocational expert" look at it. We sent the appeal in for the long-term yesterday, and I ripped their denial apart also. They used the same physician review, for cripes sakes! These are two different insurance companies, but claims are administered by the same third-party company -- and I'm not sure if it's even LEGAL for them to use the same physician review for both claims. 

I'm really mad mainly at myself, because I had faith in this insurance that turned out to be misplaced. I mean, if everybody realized that this insurance is just as hard to get (if not harder) than SSDI, why would anyone ever buy it? It's expensive too. Between health, dental, life, these 2 disability insurances, and taxes, they were taking more than $500 a paycheck out of my pay. That's over $1K per month. 

We've talked about selling the house, and I know we will have to do it.. I've agreed to it, and I understand the reasons, which are not all financial or even mostly financial.. I have problems with the stairs. So does MIL. Her room is on main floor, the other 3 bedrooms are upstairs, laundry room is in the basement - so either way, stairs. No AC in the summer, etc. I wouldn't mind selling it to one of our kids so bad, but I hate to have to sell it to a stranger (after all the work we've put into it especially!) 

On the other hand, A new place to live would be okay, it would just be right down the road. The kids would still be close. It'd be easier to clean & keep clean, all on one level, central heat & AC with wood furnace backup. We'd have to do flowerbeds, fruit trees, berries, etc. all over again. I mean there's lots of advantages and not many disadvantages, except having to redo things we've spent over 6 years doing here. (although if we had to redo them, we could do them exactly how we want them this time, like the dog pens, a barn, etc. -- AND Drone would not have so much work to do house-wise as this one.) And, who knows, maybe we'll start a whole bunch of new discussion in "Homesteading" regarding moving your Homestead. :)

I've also worrying about bills, credit ratings, etc. The list goes on, and it's All just STUFF, but it always seems to be swirlin around in my head and getting in my way, emotionally & spiritually, if that makes sense. I feel bad (& even guilty) that I'm not working any more, not bringing in that paycheck. I don't know what to do with myself for sure anymore, now that I don't have my work. Now, I'm not "the best" at anything anymore, where I was always "the best" at my job (very competetive) -- and I forget stuff so much around here that I'm at the point I feel like I don't do anything right any more. Sigh.. 

Over the last few days, things are looking up somewhat. We went to see a lawyer about the SSDI on Tuesday. He told us he screens all his clients and does not take on cases he doesn't believe he can win. He also said he didn't understand why I was denied at all & he thinks we will hear something within 90-120 days from SSDI. He is also willing to take on the STD and LTD companies if they deny my appeals (which are in process now, but your appeal has to be denied before you can sue them). We hired the attorney, and I feel better about all of it now. I figure 75% of something is better than 100% of nothing -- plus I feel like we have an expert handling it now, as opposed to us handling it and me feeling that I am trying to do something I am out of my league in. It's a big load off my mind.

There has also been good news in the fact that UNUM/Provident - a long-term disability insurance company operating under ERISA in a non-bad-faith law state - has recently been fined $15 million by the New York Dept of Insurance. They will have to go back to 1997 & reassess over 200,000 denied claims. We don't have UNUM/Provident -- BUT, the Insurance Depts have decided that they are going to do a targeted multi-state market conduct Examination in 49 states/provinces including MO. The upshot is, although they are investigating Unum/Provident/Paul Revere, other insurance companies are going to be watching their practices more closely now -- as they could be next! Other states (including MO) will be monitoring STD and LTD practices in their own states too, particularly those companies with higher numbers of complaints. (My STD company has 3 times the normal number of complaints AND the Mo Div of Insurance begged me to file a complaint against them, which I did). I also filed a complaint against the LTD company. With a bit more medical documentation, I may file a complaint against the life insurance company for my accellerated death benefits also. 

At least, I am now feeling better emotionally and spiritually. I'm feeling more up to Christmas now, although we'll probably have a "presentless" holiday. We signed the munchkin up for a local Santa Clause program, so he will still have some gifts. We will still have Christmas dinner, but Christmas is not really about the presents anyway, so that's okay too. I feel more at peace with all of it now. 

11/20/04:  Well, I finally got a decision from SSDI.  The ALJ denied my SSDI.  There were 2 major errors in her decision, so hopefully we can appeal on those grounds.  On top of that, we have new medical information.  Yesterday, I also got the denial from the long-term disability company.  It took them almost 3 weeks to get the denial letter to me.  Their denial is almost identical to the short-term denial.  Imagine that.  The medical review was done by the exact same physician, plus they had another "doctor" review it also.  Basically, they did the same thing they did with the short-term denial.  They picked & chose through the medical records & either blatantly ignored some of it, or they never bothered to read some of it.  The short-term is now going to be reviewed by a "vocational expert".  Wonder if they'll find the same thing as the SSDI vocational expert did, that I am disabled from my previous occupation?  Who knows...  In the meantime, I have had pneumonia.  Finished all the antibiotics, but still coughing.  

11/9/04:  It took me 2 weeks to type the appeal letter, but I have appealed the short-term disability decision.  I also sent copies of everything to MO Dept of Insurance, so we'll see what they have to say too.  Still have not heard from SSDI.  Hopefully soon and hopefully a good decision.  I spoke to the lady from the long-term company 8 days ago (on Monday).  She told me they were denying also, but we still don't have a denial letter from them.  Can't appeal without it, so waiting some more.  I will be going back to see Doc T, the original hematologist, tomorrow.  He has already been faxed copies of blood work, labs, and the blood volume study from Springfield.  Hope he has some answers.  I have heard so many different opinions by now, I don't know what to think.

10/31/04:  Went for the SSDI hearing on 10/19.  The ALJ was nice.  The SS "expert" medical witness testified by phone from Florida.  His testimony was that he felt I  had FMS and chronic fatigue immune dysfunction syndrome AND that I was totally disabled.  So, now it's just a matter of waiting.  Lee broke his left foot a week ago today, out cutting down trees for a new trailer spot for Cindy.  A tree kicked back & landed on his foot.  He has been in miserable pain with that.  Hopefully, they can do something with it tomorrow.  They still haven't put a cast on it yet, as the swelling was so bad.  So, hopefully, we will have some good news from somewhere soon.  

10/11/04:  I knew last night it was fixing for bad weather, as my muscles/bones/joints started aching worse. That kept me awake on & off most of the night. And, Sure enough, at 6 this morning, my eyes were open, but that's the only part of me that seemed to move without any pain. Steady rain = steady pain. It took me an hour and a half of stretching in tiny, tiny increments just to be able to get out of bed. The trip down the stairs brought tears to my eyes. Holding the hot coffee in my hands made my hand & finger joints feel some better. Dressing was loose sweats, loose shirt, & loose flannel - nothing complicated. The deodorant wouldn't cooperate, I couldn’t grip it or roll the stick up, so I just put it back. The hair tie took intense effort just for a loose, falling-out ponytail. Just slid my feet back into the house slippers. The 2nd trip on the stairs to get dressed & sort of make the bed was just as bad as the first trip down. Usually, the second trip is easier & less painful . Not so today.

Took some ibuprofen, which makes my tummy hurt and gives me extreme heartburn, but was willing to try anyway. Not that it helped much - plus, DH had to take the top off for me as usual. That always makes me feel like a baby. I have my last 6 Tylenol #3 pills hoarded but may have to break one out today. I think I am all out of Percocet but I might have hid them. I'm almost sure all the Flexeril is gone. That pain is just there, hiding in those bones & joints, hanging out in the muscles, stabbing, burning, aching.. just like vicious little biting animals attacking everywhere at once. And to think, I used to like rain.

10/04/04: Went to Doc’s office today. Went over his answers to questions the DRMS doc faxed to them. His answers look good to me. They gave me a copy. Chris swore she would fax them today. The fax from DRMS was dated 9/28/04. Doc told me that DRMS doc was “mean as a snake”. He said he asked her who signed her paychecks. She told him she does have to “keep the best interests of the patient in mind”. He told her he thought she had the best interests of the insurance company in mind and not the best interests of his patient.

9/28/04: I am very tired, very sore, in very much pain today. I suppose I overdid it yesterday, trying to do the basement steps. Sometimes I just wish for one day free from pain, one night where I could sleep the whole night through without waking up from pain. The short-term company is supposed to call me back today. She told me yesterday that their doctor is waiting to talk to my doctor. They do not understand why I am not able to work. ?? I said, My doctor has diagnosed me with a terminal illness and refuses to release me to go back to work, but you don’t understand why he does not want me to work? Ummm.. Hello? Makes no sense to me. I discussed this all with Lee last night, and I am going to call a lawyer today for at least a consultation. I am also going to call Doc’s office and make sure Chris has him call their doctor AND stick to his guns.

What I don’t get is this.. I asked them, Do they just want me to work until I fall out of the chair dead? Oh, No, they said, we just don’t understand what it is that keeps you from working. Gee, maybe it’s the fact that I can barely move half the time. I can’t sit for over 10-15 minutes without pain in my back, hips, knees, ankles, and legs. If I type for 10 minutes, my shoulders feel like someone has been beating me with a stick. If I work on this, I have to do it in 5-min to 10-min time frames. If I try to use a pencil or pen to write, after 5 minutes, my fingers feel like they are stuck in that position. It’s hard for me to grip anything small at all. Larger things are easier but only because I can use my palms and cradle them against my body. Let some little creatures stab them constantly & repeatedly with sharp objects all over their bodies, and let’s see if they can work - or even function - while all that is going on.

9/19/04: The short-term company called me back on Friday. She said she will be calling me on Monday or Tuesday to let me know when I can expect a check. She said they had approved my short-term disability on the basis of the hysterectomy, and they didn’t know about any of the rest of it until August. I told her that the guy they took off the claim knew about all the other stuff from the beginning, clear back in April. I don’t know why he didn’t pass on the information, but apparently he didn’t. Still waiting to hear from the long-term company. In the meantime, we have a scheduled hearing date for Social Security disability (Yay!) That will be on October 19th. At least it is not a year away. They are doing telephone testimony from a doctor in Florida, who is an internal medicine specialist and is a “medical oncologist”, whatever that is. No testimony from a rheumatologist or a hematologist, though. I wonder why.

9/17/04:  I have calls in to the short-term & long-term insurance companies.  Hope to hear something soon.  I wonder how many of these people ever went 2 months without getting paid?  We got all the information mailed back to Social Security also.  Ah, well, just more paperwork to deal with, I guess.  Everything requires more paperwork.  Document, document, document.  I wish I had known months earlier that the doc's office didn't have all that paperwork.  That set us behind considerably.  I have been very tired lately.  I have had some large and very itchy patches of some kind of red rash lately too.  Don't know if this is just more from the lupus or if it is caused by stress.  

9/11/04:  We will have to go to the doctor's office on Monday, and Chris will make more photocopies for me.   Then, they will send in information to one of the insurance companies.  They wanted the doctor's office to fax that information, but there are hundreds of pages now, so they will mail it and call the insurance company to let them know they are mailing it.  Social Security approved my appeal, based on the documentation I had provided.  So, now we have more papers to fill out for that.  The paperwork required to actually collect something you have paid into for years, whether it be short-term or long-term disability insurance, accelerated death benefits on life insurance, or even Social Security disability is just overwhelming and almost unbelievable to me.  It's hard for me to fathom at times that we work for years doing the same job, paying blithely into these insurance programs, expecting them to take care of us when something bad happens, never realizing that we will actually have to fight to get paid when we really need it.   My doctor says don't give up.  These determinations are all made by third-party companies now, even Social Security determinations are made by a third-party company now.  Appeals are still decided by the administrative law judge, however, which is still a real person that you meet face to face, and not a shadowy figure at the other end of the phone or the mailbox.  Those people (from the insurance companies) never meet you, they rarely speak to you.  When they do, they ask the most ridiculous questions you can imagine.  They make you feel as if they are accusing you of faking, regardless of your physical symptoms, mental confusion, medical records, and everything else.  They often seem to me to have no compassion, no empathy, sometimes no humanity.  It seems to me that they just don't get the fact that I would much rather be working and not be in pain.  I would much rather go back to my "old life" than be disabled.  It is very discouraging to me sometimes.  

9/2/04:  We went to town on Monday (8/30) and made 478 photocopies of my medical records.  When we first got to the office supply place, the photocopier was being fixed.  We tried the library also, but their price was over twice that of the other place.  We waited for the copier to be repaired at LS.  While at the library, I had a confusing spell though.  When we decided we were not going to use the copier, I put the papers down on a table.  Lee asked me if I was taking the papers back out to the Blazer, and if I would bring the cell phone in.  I headed toward the door -- without the papers.  He reminded me to take the papers with me.  I picked up the papers, headed again for the door, thinking to myself, Take the papers to the Blazer, bring in the cell phone.  I got to the parking lot, turned a full circle in the parking lot, and had a few minutes of panic, thinking that someone had stolen our Metro.  It was not there.  It took me a few minutes to realize I was looking for a car we had not owned for over a year and a half.  I put the papers in the Blazer and grabbed the cell phone.  I had several episodes of similar confusion on Monday. 

We did go back to LS office supply & get our photocopies done.  We then went to Roams & ate lunch while we collated copies.  Then we took the copies to the post office & mailed one for short-term disability, one set of paperwork for waiver of premium claim, one set for accelerated death benefits claim, kept one set for Social Security and one set for long-term disability insurance.  We were waiting on an appeal form from SSD, which was in the mailbox when we got home.  So, printed out other pertinent documents for them, including my Pain Journal, how my activities have changed, etc. and mailed it out to them on Tuesday.  I am still waiting to hear from DRMS in regards to the long-term claim.  DRMS is the third-party company hired by the short-term and long-term disability insurance companies to manage claims.  Sort of like insurance adjusters, I guess.  I was very grateful to have Lee's help on all the collating and organizing of all that information.  I don't think I could have even gathered it up by myself, let alone organized it all into coherency for the insurance companies.  So, the last 3 days has been pretty draining for me.  Stress makes me feel worse, definitely.  

So, now all we have to do is wait to hear from the insurance companies and SS Disability -- yet again -- on this whole round of appeals.  And still waiting to hear from long-term disability on a first-round.  What a mess to try and collect on any type of insurance that you pay into, regardless of whether it is private or government!  If I had known the medical records were not complete at Doc's office to begin with, it would have been much simpler to be organized and gather all that information at the beginning, rather than waiting for months to be told they needed more -- I mean, why didn't they tell me that at the beginning, rather than waiting to deny me to tell me?  Ah, well, we'll have to wait & see what they all say now.

8/29/04: I really paid for the good night’s sleep on Saturday night. I had a fairly easy, good day yesterday (Sunday), but could not sleep well last night, with muscle cramps, etc. I have learned to deal with the polycythemia (mentally) and am learning to deal with the FMS (I think). In my mind, I have not even addressed the issue of systemic lupus yet. I can only do one thing at a time, and have a hard time staying focused on that one thing. Everything seems so hard now, things that used to be simple. Paperwork is terrible now, and Lee has to help me with it all. I know I will hate it when it gets to the point where someone has to read to me, help dress me, feed me, or help me go to the bathroom. I don’t want to die in a hospital though. I want to be at home. I wish the insurance companies would get all this stuff settled out, as the stress is killing me. It makes my pain & headaches even worse, as then I have muscle tension along with everything else. Guess I will just continue to pray about it, and it will all have to come out alright in the end.

8/24/04:  I see I have neglected this a lot lately.  So much going on in my life.  Since I was diagnosed with fibromyalgia, I have also been diagnosed with "suspected" systemic lupus.  My doc says I meet at least 7 of the 11 necessary criteria for the diagnosis.  So, I guess that is now beyond suspect.  So, sue me, I am the world's best "in denial".  He also says the polycythemia has progressed to the "spent" phase, so has written on all my insurance paperwork that I am not allowed to go back to work, and that I am terminal.  The insurance companies are having a hard time with this "due to lack of documentation".  Social Security Disability has denied me also.  Makes me wonder sometimes why we pay all these premiums and why the government makes you pay into Social Security all your (working) life.  If I had the choice, I would be working.  I made good money, our bills got paid, we had lots of "play" money.  I felt much more in control of my life, regardless of the pain.  I got a large portion of my identity from my job.  I was the best.  They told me so.  Even after I left, my boss and her boss both told me I was the best and fastest MT they ever had there.  I know there is a lesson in here somewhere that I am supposed to be learning.  Or, maybe the lesson is for someone else to be learning?  I don't know.  Some days, I feel angry.  Some days, guilty, useless.  Other days, I know it will be okay, however it turns out.  I just have to keep plugging away at it and hang on to my faith.  I hate pain pills.  Although they have offered them, I don't even want the prescriptions.  They did give me Tylenol #3 after my surgery, and I took them while I needed them.  I have been taking the Trazedone (some nights) that the rheumatologist prescribed.  I only take 1/3 to 1/2 pill at a time, not every night, but when I really need to REST.  Lots of nights, I hurt so badly, I can't get comfortable, no matter what way I turn and twist.  It hurts to wear clothes.  My skin is very sensitive.  My muscles and bones are also aching, sore, tired, burning, throbbing, I don't know how to describe it.  This is a long post, but I've been reading a lot of information from my new "fibro family".  So, I feel like I have some new feelings I am trying to work out in my own head too.  I am going to start keeping a written journal of all this too.  

8/15/04:  The new hematologist was not much help.  He said he didn't see any sign of polycythemia in my blood work.  My doc says it doesn't just go away.  BUT, I had been hemorrhaging for weeks, so all his blood work came out fairly "normal".  However, my doc says that is just more proof that my blood is not normal.  If it were, I should have been profoundly anemic.  The upshot was that I had to have a hysterectomy in June (the 23rd), so now am dealing with all the lovely hormonal changes of instant menopause, along with pain, fatigue, insomnia of fibromyalgia & lupus.  I have met a wonderful group of people, a fibromyalgia family.  I have found out lots of things about fibromyalgia, and about lupus.  Oh, that was another thing, he said he suspected I had systemic lupus, but he would make his consultation report and recommendations and leave all that up to my doc.  I also had hyperhomocysteinemia, which is an elevated homocysteine level, another hypercoagulable disorder that leads to blood clots.  This is usually associated with heart disease and diabetes, but I don't have either one of those.  My cholesterol is great, triglycerides are great too.  In fact, if I didn't have these weird diseases going on, I would be in great shape!  The new hematologist did say that I would not be a candidate for stem cell transplant regardless, because of the blood clots in the brain, "cerebrovascular disease", etc.  My bones still hurt, my brain feels foggy, and I have trouble remembering lots of things.  It is so hard to get out of bed some days, but I keep trying every day.  I have been learning to put things into our Hallmark Calendar Program to remind me of bills, appointments, etc.  Sigh.

4/18/04:  I have been to see a rheumatologist last week, and found that I also have fibromyalgia.  I don't know much about that yet, other than it is a separate disease from polycythemia, and it's painful.  I do know that, a lot of things they have blamed on the polycythemia have been caused by fibromyalgia.  I still have to go see a new hematologist next month to check on the possibility of myelofibrosis.  I'll cross that bridge when I come to it.  In the meantime, my doctor has taken me off work, possibly permanently.  Hopefully, if they find myelofibrosis for sure, we can check into the possibilities of a stem cell transplant or something that might help.  

1/27/04:  Christmas went well.  New Years is past.  It has been 2 years since I started this diary.  I'm sure glad I got past the angry phase and back to work full-time, etc.  Looking back on it now, I see where we have really come a long way since then.  I still have PV, but I have learned to accept it and live with it.  In talking with my doctor yesterday, I mentioned the fact that I have already FAR outlived their "projected" lifespans for PV.  "Yes, you have," he told me.  We laughed about it.  I think they think I am an anomaly, though, a strange variation from the normal cases they see.  That's okay, I don't mind.  Maybe I will live to be 90, after all!  :)

12/20/03:  Still need to get shopping done, stockings hung, etc.  We did get the tree up and the town set up, so it looks a little more "Christmasy".  I also feel a little more in a holiday spirit now.  :)

12/12/03:  This year is almost over.  Christmas is fast approaching.  We still don't have our tree up, no decorations yet, and my town is not up yet.  I am hoping to get all that done this weekend, since I have a 3-day weekend this week.  Didn't even start our Christmas shopping until last night.  This is SO unlike me.  I am usually very enthused about Christmas.  I usually feel that Christmas is the only good thing about winter (I really hate snow and cold).  I have just been so really tired this year.  I don't know if it is just leftover from having pneumonia or if it is some creeping form of lassitude...  Whatever it is, I don't like it.  Maybe I just need some vitamins.  :)

12/04/03:  I was off work with pneumonia for that whole 6 weeks, but I did get to go back.  Had to have another phlebotomy last month (in November).  Things have been hectic around here.  I don't have any Christmas decorations up yet, no tree, and my town is still in the attic.  I have bought a total of ONE present so far.  Hopefully, things will slow down after this next week.  I will have a 3-day weekend off the 12-14th of this month, so I hope to get things done then.  Keeping fingers crossed anyway.  

10/27/03:  I have been sick with pneumonia since the last half of September.  I am doing better now, and hope to go back to work next week.  I will have been off work for 6 weeks by the time I go back.  I have been kind of lost without working.  I  am hoping the chest x-ray is clear when I go back Friday, so I can go back to work.  I had to have a phlebotomy in August, and we have agreed to keep the hematocrit at 42 or less from now on.  The fancy ophthalmologist was a bust.  I had learned more from my own ophthalmologist than I did from the fancy doc.  I am supposed to go back to see him next month too.  My eyesight has not improved in the right eye, and I have very little vision left there.  They feel it is caused by damage from a small blood clot.  

06/21/03:  In December, I went to the doctor and talked to him some problems with my eyes and other neurologic symptoms.  He gave me a medicine that I only took for a couple weeks, as I started thinking my family members were trying to poison me.  I looked up the medicine and found out it was generic Prozac!  Grrr..  I really didn't need an antidepressant, but I also was angry because I felt like the doctor did not listen to a thing I said.  

It took Lee months to talk me into going back to the doc.  In April, I went back.  He got me an appointment for an ophthalmologist for that afternoon.  The eye guy told me he thought I was having tiny little showers of blood clots in my brain, and some of them were lodging temporarily in the optic vessels.  Some of these have caused permanent damage, and it could eventually cause me to go blind.  This was a possibility I had not even thought of.  I went back in a few weeks, and he told me the left eye is stable and maybe even improved.  The right eye was worse.  He told me what he thinks is going on, but he also said he doesn't know enough about Polycythemia to know for sure.  He referred me to a neuroophthalmologist.  I was supposed to go on June 3rd, but the Blazer wouldn't start that day.  (This is the only day we've ever had this happen).  So, they rescheduled my appointment for July 30th.  I'm not sure if I want to go or not.  I guess this is one of those times where you wonder if it's better to know or not to know.   Guess I'll figure it out after I see the specialist.  

05/17/03:  It's been a while, and we have been very busy..  Lee is in the process of putting a new roof on our house now.  Mom will be here for a visit next week.  We got missed by about 1/4-mile in the rounds of tornados that went through here on Sunday, May 4th.  All we lost was a few trees.  So, that's all good.  We had 8 children, ages 2-6, in the basement, along with their mommies and at least 1 daddy, plus 2 neighbor boys, us, and Gramma Corky.  Oh, and the puppies!  

The devastation in the area was terrible, though.  Whole trees were torn up by huge root balls, mobile homes gone, or broken in half like some naughty child's forgotten toy, some just twisted and deranged.  We saw a small stone house reduced to a big pile of rocks.  Another home that sat on a ridge is now just gone..  scattered completely down the side of the ridge in small chunks that resembled blocks and toothpicks.  A home not far from here just had one big hunk out of the middle of the roof, like some huge monster just came down and took a bite out of it.  The ways the storms danced about, up and down, picking and choosing this home or that for their destructive games, and leaving others completely alone -- it completely mystifies me.  Obviously, our guardian angels were watching over us, and the Lord had his hand on us.  Our whole community came through without losing anything other than trees mainly -- oh, and a bit more roofing!  Our family is all fine, and our homes are all still standing and livable.  

Stuff like that kind of puts our lives into perspective, doesn't it?  I mean, we were in our basement for the first time in 5 years, but we had to go 3 times in one night.  I was at peace, though, that if the storms blew the whole house to toothpicks, we would all be okay.  We would climb out of the rubble and start over again, and I knew we would make it.  Guess that's when faith comes in handy...  

01/30/03:  We are back from vacation, and we had a great time!  We stayed with Mom for 2 weeks, and Lee painted her mobile home.  It is now white with blue trim instead of PINK.  We took Isaiah, and we saw the Animal Kingdom and the Magic Kingdom.  Both were great, and we had a blast!  It was better than Disneyland in some ways, although I didn't have the energy and stamina that I did back then on this trip around.. :)  I sure was grateful for things you got to sit down and ride through.  hehe.  The drive there was beautiful, and we saw the Gulf.  The drive home was beautiful too.  All in all, it was a great trip, and another item on my list is now accomplished.  

01/03/03:  Well, one more week, and vacation time will be here.  This last year has been very up and down.  We have lost some very dear members of our family, and yet we have also found some very dear family members that we have searched for forever.  All of OUR kids were here for Christmas except Shannon, including both Lee's kids, Christopher and Shanna, and all the grandkids too.  So, this has been a great holiday for us.  We will be leaving for Florida soon, so I'll be seeing a place I have never been.  I will get to visit my Mom, and we will get to see Disney World.  I can't wait.

08/24/02:  We have spent the month of August working on expanding our orchard.  I got my first stevia sprout, so have been babying it along.  We have planted 2 grape vines, 1 pear tree, 2 plums, 3 cherries, 2 peaches, and 3 apples to add to our pecan trees.  Also bought 4 raspberry bushes and ordered some gooseberry bushes.  We will have to replace our asparagus bed and rhubarb and plant it elsewhere I think, next year.  Or try to move the stuff, but I'm not sure if that's possible.  We'll have to see.  Regardless, we have been busy.  I am looking forward to January and our vacation to Florida!  :)  We will be visiting my mother, and hopefully do a bit of sightseeing.  I have never been to Florida, so am really looking forward to  it.  :)

07/30/02:  I have been keeping pretty busy with working full-time, and then of course there is my garden and plants.  Not a very big garden this year, but it's something.  We went with raised beds this year, and started out front.  We have given up the old garden spot other than the asparagus and rhubarb.  I have tomatoes, peppers, and lettuce in a raised bed, then planted yellow watermelons too.  The tomatoes are up over the front windows already.  I have planted stevia seeds in pots indoors, hoping they will sprout.  I also took 2 mango seeds and put them in to start.  One has a shoot on it.  I started an avacado seed yesterday too.  I have my herbs -- mint, parsley, chamomile and a few others growing in pots on my screen porch.  We had a great weekend.  Went to the flea market and some other places.  We bought 2 apple trees, 1 pear tree, and some grapevines.  Can't wait to get those planted.  :)

05/27/02:  Jolene's memorial service was yesterday, and it went pretty well.  It was a beautiful day, although I know the whole thing was hard on Pat and her daughters.  I think it will be easier from here on out though.  

04/21/02:  It has been raining on and off here all week.  The rain is good for all the trees and plants, that's for sure.  Last Monday, the only thing that was really green was the grass.  We did have dogwoods, irises, daffodils, forsythia, Japanese Quince, and Russian olive in bloom, and the baby's breath was starting to bloom, but really most of the trees just had buds and no leaves.  Now, the leaves are out on all the trees, and you can barely see the cabin from the house again.  I am waiting on the trumpeter vine to bloom, as that is one of my favorites.  I can't wait to get in the garden, as somehow the garden really makes me feel peaceful.  I miss it in the winter time.  One of these days, we are going to build a greenhouse, so I can "garden" in the winter too!  It sure is pretty here in the spring.  I love all the blooming things.  The grass is so green, and it's high enough to need mowed already.  We will be getting a new roof on our house this summer.  YAY!  I can't wait!  Then, we can start the inside remodeling a little bit at a time.  We are going to be putting in 4 new ceilings, a whole new floor in the kitchen, and new tile in the dining room.  There is carpet in the dining room now, but I'd rather have tile or linoleum as it's MUCH easier to keep clean.  I can't wait to get in the garden, but it'll have to dry out first.  We're going to try something new between the rows this summer to see if we can't cut down on some of the weeds out there.  Hopefully, that way I can keep up with that big old garden!  :)

04/15/01:  Had a good weekend.  Did not do a darn thing on Saturday.  We did go to the Baker Creek Heirloom seed convention on Sunday, and that was fun.  It's been a while since we had a weekend adventure, and we had a good time.  We bought a very few things and picked up some free catalogues, books, and other reading materials.  There were also some interesting speakers.  I did hear that my daughter is okay.  I don't think she wants to come home, but she is okay.  So, that made me feel better.  My Mom should be coming to visit next week some time, so that will make me feel better too.  I love having my Mom come to visit!  She always makes me feel good.

04/12/02:  Another bad day yesterday.  My daughter ran away from home, apparently, on Wednesday evening.  I didn't know she was gone until I went to wake her up for school.  She will be 17 in August, and I don't understand why she left.  She was just on the verge of getting her driver's license, insurance, and plates for her car.  So, yesterday was a bad day for me.  I also found out this a.m. that my friend, Bev, will not be visiting this weekend, as she is in the hospital with a severe Raynaud's attack.  We'll be praying for her.  I hope today will be better.  I always thought I was a good mother, but I just don't know any more.  Pat's parcel is coming along.  He is going to hire a bulldozer to help on the road.  Shawn got his mobile moved, so his place is coming along also.  

04/06/02:  Lee's birthday is today.  I sure do love this guy.  He wanted a water trough for his birthday.  I went and got it a week early, and he loved it!  Actually, I just paid for it, and he picked it up!  I just couldn't fit it in my car!  I've been really thinking about that garden lately, and can't wait to get my hands in the dirt again! 

03/25/02:  Lee took Corky to the doctor today to get her some prescriptions filled.  She is doing so good.  I really love this lady!

03/11/02:  Lee went to Arizona to get his mom, and he brought her back here to live with us.  She fits right in here, and I love to have her here.  She is in sort of delicate health right now.  She has had 9 stents put in her heart, but she gets stronger every day.  She has been helping out with kid buckets and the calf bottle.  She can walk farther every day without stopping to rest or getting too out of breath.

02/16/02:  Pat's been working on that parcel of land, him and Lee both.  They've been clearing a road in and working on plans for a house for Pat.  Lee also wants to build us a new house down in the valley too.  I think that's great, but I'm not sure I will be around to live in it.  I guess that the Lord will make it happen if it's supposed to.  I have really sad days sometimes...  and really happy ones too.  Valentine's Day was a really happy day, and today is a really sad one.  I don't know why the days fall like that, I just know they do.  I really miss Jolene today, Maybe that's why it's a sad day...  

02/14/02:  Valentine's Day today.  I got a beautiful sterling silver heart necklace from Lee and a chocolate rose and some other chocolates.  I took him out to dinner...  Pat went with us, and he mentioned that he could feel Jolene too.  I agree.  I'm sure she was there.  She loved Chinese as much as the rest of us do!

01/29/02:  Jolene passed away this morning at around 5:45 a.m., with Mom, Pat, and Lee there.  I will really miss her.  Today has been spent on the phone for Lee and Pat, notifying family and friends, and also making arrangements, etc.  

01/28/02:  Jolene is not doing too well.  She had a wonderful day today, though.  It was beautiful outside, in the 70's here.  The sun was out, and she sat on the screen porch in the sun, petting Angel's puppies and holding them on her lap.  She visited with us all, spent time with Pat and with her Mom.  She seemed more aware of what was going on today, less sleepy all the time..  

01/27/02:  Lee's mom is great!  Her name is Corky, and she is a little tiny woman with a great big heart!  She walked in that door, and Jo knew immediately who she was.  She got the most beautiful smile on her face, and then they were hugging.  Jo is in a wheelchair pretty much all the time she is up now.  She is very weak and tired a lot, and the pain medications cause her to sleep a lot.  She still had a nice visit with Mom before she went to bed.  Then it was a hard time to talk her into going to bed!  I think she wanted to stay up so she didn't miss any of the visit while Mom was here.

01/20/02:  We have our flight arrangements made.  Mom will fly in to Kansas City next Saturday, stay a week, then fly back to Las Vegas the following Sunday.  Can't wait to meet her!

01/18/02:  I went to the doc today with Jo and Pat.  He said she needs to get her goodbyes said and any arrangements out of the way, because she doesn't have much time left.  Gosh, this has been such a sad day.  We all knew it was coming, but not this soon.  We're trying to make flight arrangements for Lee and Jo's mom to come and see her.  Jolene made Pat and Lee make a list of the way she wanted things to be when she goes.  She wants to be cremated.  She wants to be buried here on the Mountain.  She wants a few certain songs, Chris Ledeaux's Look at You, Girl, and If you Want to Get to Heaven, by Ozark Mountain Daredevils were her picks.  Pat's was Spirit in the Sky by Norman Greenbaum, and Lee's was Fat Bottom Girls by Queen.  She didn't want Pat to spend a lot of money or to be in debt.  She didn't want to be propped up in a funeral home for display.  She wanted very little fuss.  She also made Pat to promise that he would stay here and still build that home for them.  Jolene is one of the bravest and strongest women I ever met in my life.  I hope I am the same way when my time comes.

01/05/02:  Jolene and I had a talk about dying today.  Being as both of us have terminal illnesses, this isn't the first time we've talked about this.  She's known for about the same amount of time that I have that she has a terminal illness.  Of course, hers had a lot shorter survival rate..  we talked about whether it was better to know you only had a short time for sure or not (like she does) or to know that you have a longer average survival rate but not have a clue how much time you have left (like me).  We never did decide which one was better, but we did agree that both had their advantages and disadvantages.  Knowing a time frame would allow a person to say all their goodbyes and all that, but How can you really say goodbye to people you love?  Not knowing is okay in some ways and not okay in other ways.  Sometimes, I get terrified that I will have an argument with someone or say something mean to somebody and then not get a chance to say I'm sorry before something happens to me.  I don't know, I guess whichever way it happens, it all sucks...  Not getting to say goodbye at all is worse, though.  I think we both agreed on that. 

01/03/02:  We got Jo a new doctor today, Dr. Franklin, and he is a great guy.  He even offered to come to the house to see her if she needed anything.  Not many doctors these days still making house calls, but this one offered!  

12/24/01:  Lee went to bring Jolene home with him today.  She is being released from the hospital, and she is coming to live here with us.  Pat will be joining her here soon also.  They want to buy a small acreage here on the mountain, and that will be great.

12/21/01:  Christmas will be here soon.  We have some shopping to finish up this weekend.  The stockings are all hung up now, and our village is up in the dining room.  The house looks great (once you get through the screen porch, anyway!)  The kids are all excited.  Me, too.  I miss my Mom down in Florida.  I'm hoping to get down there to visit her this year, and maybe take the kids to Disney World.  I've always wanted to see the Magic Kingdom.  That would be fun.  Our bills are down to a manageable level now (I think), and we're trying to keep it that way.  Besides saving up money for a roof, I want to pay off our credit cards too.  Lee's sister is in the hospital, and we're not sure how long she'll be there.  Hopefully, Lee can make a trip up to see her.  We have been in touch with the rest of our family, or at least the ones that we know where they are.  Life is good today, and that's all we can ask for.  

11/25/01:    Hello, again.  I've been back at work full-time for 3 whole weeks now.  I just made up my mind that I was going to do it, and I have been.  I prayed long and hard about it before I did it, and he's been helping me get through it.  It's been hard sometimes, but I'm getting through it.  I have the headaches whether I work or not, so I might as well make some money.  Besides, I don't want us to lose our home and everything we've worked so hard for either.  We worked our butts off to come up with the down on this place, and we did it in 4 months.  We've now been paying on the whole 42 acres for 2 years (since we refinanced), plus over a year on the original.  We only have 8 years to go on our contract, and then it'll be ours.  Slowly but surely, we're trying to get caught up on everything.  I'm hoping to have enough money by next spring to put a new roof on the house, put in new ceilings in the dining room, kitchen, utility room, and living room, (and maybe the pantry), and put in new tile in the kitchen and dining room and new carpet in the living room.  So, those are my goals for working.  Also, I would like to get a Mantis tiller this next spring for the garden and an Excalibur dehydrator.  The other goal I have involves the insurance.  If I can continue working without problems until March 1st, then we'll have health insurance, life insurance, and dental insurance, along with the fact that I'll have disability insurance -- and they won't count my polycythemia as a pre-existing condition.  AND, we'll all be able to go to the dentist!  I am really in the Christmas spirit this year, and our house is decorated to the max.  He's been putting up tons of lights and decorations outside.  Our tree is up already, and we have boxes of ornaments and decorations out and are in the process of putting them all up.  It looks like it'll be a great holiday this year!  Lee made me feel good last night about the whole thing.  He said, "Do you know what I'm most thankful for this year?"  When I said, "No", he answered, "You."  He told me he's thankful that I've been able to go back to work full-time and he doesn't have to worry about losing the place anymore and all that -- especially with winter coming up.  It sure made me feel good.  I almost cried!  He's such a great guy!  

10/19/01:  Well, I've gotten a few things done on my list.  I've sent e-mails to Rosie O'Donnel and to Oprah Winfrey.  I also sent a letter in the mail to Robin Williams.  I guess I really don't expect replies, but that would be nice too.  I've been in much better spirits lately.  I hope it stays that way.  

10/04/01:  I decided to keep this on a separate page, because it might depress some people.  I also made up my mind to make a list of things that I want to do.  Everybody has a list of things they want to do "someday".  My someday might be sooner than your someday, though; and I wanted to put my list on the main TI page.  It's a positive thing for me.  Hopefully, I'll get to do them all!  My oldest daughter, Tricia, is 24 years old today.  Happy Birthday, sweety!

9/29/01:  Well, it's been a very long and very weird month, hasn't it?  Things will never be normal again, will they?   This is true in our lives in so many ways.  I don't know that our life was ever "normal" though! 

Lee went to the dr. today for an abscessed tooth.  The doc gave him antibiotics and pain pills.  Before we left his office, though, he pointed at the sun spots on Lee's arms and told Lee to make an appointment to come back and have those "skin cancers" taken off.  Only in our family can you go to the doctor for a toothache and come out with cancer.  !!  The little white spots are precancerous lesions, and there are 3 larger spots on his arms that are skin cancers.  He has more spots on his legs that are the same.  The precancerous ones can be frozen off, but the others will have to be removed.  This freaked me out because my Dad died of skin cancer.  I realize that the chances of two people that I love having a very aggressive type of skin cancer are small, but the thought still crossed by mind.  

We'll have to go back and have them taken care of, though.  I'm trying not to worry about it.  No matter how bad off you think you are, someone, somewhere has it worse.   Jolene's illness has pointed this out to us over and over again.  She is now on a clinical trial of some new cancer treatment.  The biopsy of her adrenal gland was positive.  The events of this month in New York and Washington, D.C. have also pointed out to us that our lives could be so much worse than they are.

My disability was denied, but we did file an appeal.  We have been granted the appeal, but we have to wait for an administrative law judge to be available to hear the appeal.  It seems to have lost some of its importance to me..  We're still waiting on court for guardianship of our little guy.  That's been postponed twice, and has now been bumped up to November.  I guess what we've really learned is that life goes on...  day by day...  little by little.  We can only do what we are capable of doing, but we do have to be willing to do what we are able.  

5/23/01:  Things are slowly but steadily getting a bit better.  We still have not heard from the Disability people.  We have been approved for some medical assistance but not yet going back through January when I first got sick.  I am really very tired sometimes...  My family is a big help to me, especially my youngest daughter, Shaleen.  She helps with grocery shopping, cleaning, and Isaiah, our 2-year-old.  Also, my sister-in-law is a big help too.  She likes to do laundry.  Lee has been up and down too in trying to accept all this.  It scares him too.  Lee's sister was diagnosed in February with terminal cancer, so we've had that to deal with also. We didn't find out about her illness until this month.   She is doing chemotherapy and radiation therapy.  She has non-small cell cancer of the lung.  Gardening has helped me also..  It is somehow therapeutic.  Wish I had some big and brave words of wisdom for everyone to go by, some magic words that would make life all better for everyone...  Sigh...  I am only human, after all, though; and I guess all I can do is to take it one day at a time and then move on to the next one..  

4/26/01:  Well, I think I am doing a bit better with all this now.  I have applied for disability, but I don't know how that will end up.  I don't even know that I want it -- but the medical insurance is a must.  We are racking up the medical bills at a rate of over $20,000 right now.  Plus, our other bills are going to heck in a handbasket.  I know something will have to happen soon.  I still have my angry days, my depressed days, and my okay with everything days.  I even have moments of profound peace about it all.  I also have times of being extremely scared.  I guess I'll get used to it all eventually.  

2/26/01:  As some of you may know, if you have ever visited our family's web site, I was recently re-diagnosed with primary polycythemia vera.  It's a blood malignancy in which the body produces too many of all types of cells, but primarily too many red cells.  One would assume that red cells are good.  Well, too many aren't good.  With polycythemia comes headaches, fatigue, dizziness, visual disturbances, weight loss, blood clots, spleen enlargement, and other fun things.  The blood clots easier, but there is also an increased risk of hemorrhage.  They don't know what causes it, and there is no cure for it.  They have done studies on different forms of treatment for it including phlebotomy (where they take a pint of your blood), chemotherapy, and radioactive therapy, and combinations of the above, also on life expectancy without treatment at all.  Believe me, we did consider that alternative also -- but not for long!

Lots of people get secondary polycythemia which means it's caused by something else such as carbon monoxide poisoning, too much smoking, high exposure to pollutants, etc.  If it's caused by something else, it will go away when you are no longer exposed to that thing.  Primary means it isn't caused by any of those things, it's just there; and it doesn't go away.  The symptoms can be treated but not cured.  Most people are diagnosed with it in their late 50's or early 60's, and the median life expectancy is 11-15 years (with phlebotomy treatments), 8-10 years with chemotherapy, 7-10 years with radioactive therapy, and 18 months without any treatment at all.  I was first diagnosed with this in 1980, though.  Back then, they didn't know much about it.  I managed to survive 20 years without being treated at all.  However, in that period of time, I had several surgeries, several kids, and was in a few car accidents.  So, apparently, God was treating me in his own way.  

Well, if you're in your early 60's, another 15 years is pretty much a normal life span.  However, if you are only 43 (like me), that means I may live to be 58 years old.  My father was 58 years old when he died.  I may live to see my youngest daughter turn 30 and my oldest daughter turn 38.  I might make it long enough to see my oldest granddaughter graduate from high school as she is 3 now and will be 18 in 15 years.

Seems rather unfair to me.  It took me until I was 39 years old to get together with the absolute love of my life.  We've been together for four years.  We may make 19 or 20 years if we're lucky.  I promised him 50 years.  I was looking forward to being 90 years old, in my rocking chair or my porch swing.  But, it seems as if the Creator has other plans for me.  I have only known this for a month now, so I am still not resigned to it nor have I made my peace with it fully yet.  I'm working on it, though.  

Life is a terminal illness.  As soon as we are born, we begin to die.  Every day we have here is a gift from the Lord.  Our life is a gift, and it's not ours to give back or to try to  hold on to when it's time to pass it on.  I have known for some time that there was something wrong with me, but I didn't go to the doctor simply because we have no medical insurance.  When I finally did go, it was a flying trip to the Emergency Room where they thought I was having a stroke.  They admitted me and ran what seemed like hundreds of tests, blood work, CAT scans, MRI's, etc.  I was discharged and had to go back for more tests also.  The diagnosis was finally made on 1/25/2001 by a hematologist who is one of the best.  

I have headaches as my most common problem.  I usually go to bed at night with a headache and wake up in the morning with a headache.  They are of varying severity, but I am almost getting used to them unless they are way more severe than most.  I have had the visual disturbances in my left eye for a few months now, with gray spots or blurry vision -- or completely grayed out vision.  I lost the vision in that eye altogether the day I went to the hospital.  I also had left-sided weakness and numbness.  There was drooping of the left eye and mouth.  

Fatigue is a common symptom also, along with muscle and joint aches and pains.  I thought that all of these symptoms were caused by menopause (and they can be, except for the vision changes, but mine weren't).  Dizziness is another symptom.   Of course, they give me medicine, but not a lot of it.  I have been prescribed with Amitriptyline, because they said I was taking too many Tylenol.  So far, I don't think the Amitriptyline does anything for the headaches.  They gave me samples of Prilosec, because ulcers are another common thing that goes along with polycythemia.  I also have gastroesophageal reflux disease and a hiatal hernia.  However, the Prilosec is expensive; and we don't have any insurance, so until we get more samples, I guess I'll have to do without those. 

I guess this is my sounding board page, a way to explore my own feelings about terminal illness and try to learn to cope with it and deal with it on a day to day basis.  Some days I get really angry about it because it just seems so unfair.  Other days, I really don't mind.  I try so hard to think of every day as a gift from God in which I get the opportunity to see one more sunrise or one more sunset.  Then, I think, well, this is just God's way of making me sit up and take notice of those things and not take them for granted every day as we are all inclined to do sometimes when we live such busy lives.  

Each day is different and unique, and there will never be another one like it -- ever.  I hope I am able to cherish each one that is given to me and that I learn to spend them all wisely.

The Dance

Life is a Terminal Illness

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This page was first created on 2/26/2001

Moved to it's own spot on 10/4/2001.

and moved again on 5/18/03