Thankful

It was a beautiful day today.

Me, happy.  1979.

Me, happy. 1979.

I got up, walked the dogs with Son as we always do.  We all had breakfast together.  I was exhausted and went to lay down for 1/2 hour or so, but Husband let me sleep.  So when I awoke I found it was 1:30 in the afternoon.  It felt like I wasted a lot of time, but I made up for it.  Husband and I spent most of the afternoon in the yard, listening to music, and watching the hummingbirds and butterflies.  It was wonderful!

Mom

Mom had a mild heart attack last night.  I don’t know exactly how you have a heart attack when you have an implanted defibrillator, but she did.  At least they didn’t take her to the hospital, so I guess it was pretty mild.  She’s going to see her cardiologist Monday.  We drove up to see her.  She always looks frail, frightened and tired when we arrive, but she perked up when I offered her Krispy Kreme donuts.  I know, you should not give someone so unhealthy such an unhealthy food, but really, at this point how much harm can it do?  And she devoured one whole glazed donut!

At least we got her to eat.  She only weighs about 85 lbs now and probably 5″ or 6″ shorter than I.  When I first met her 35 years ago, I could look her in the eye.  How can someone lose so much height??

She is an enigma.  She tells no one what she is thinking.  Questions are answered with a minimum of words.  And now that her memory is getting bad, I’m afraid her story will never be known.  Just as I knew nothing about her husband, or my own mother and dad, for that matter.  Isn’t this the stuff that should be handed down to the next generation?  The stories of lives, not just dates and names, and addresses.  I guess that’s the genealogist in me.  I know more about her family than she does, but I don’t know the people.  Her parents left Missouri during the Depression (Mom was born in ’29) and they drove the whole family to California where they were migrant farm workers until the end of the Depression.  What stories must’ve been lost!  Of course, Mom was very young and doesn’t remember much, and apparently her parents didn’t talk about it.  She’s the last of her family.  She’s outlived a daughter, two husbands, a dog, and all her siblings.  It’s hard not to be sad about it.

And So It Drags On

The Short Sale on the house just got put on hold.  My realtor is furious and blaming me for providing her with wrong information.  I was told everything was a go a few weeks ago, then someone from BofA called my realtor and said she couldn’t list the house.  Now the realtor has to pay a fine because she’s already listed the house on the MLS.

ForeclosurePlus we owe some $3000 in fees, dues, and fines or the HOA will take us to court.  I called the lawyer today and talked to a secretary who made it seem like it was no big deal.  We just complete a simple Stipulation–basically a payment agreement.  When I got to the guy to discuss the stipulation he explained if we can’t pay the $3000 all at once, they will take some $400 per month until the house is sold.  The HOA already has a lien on the house and will get their money when the house is sold.  I calmly explained to the lawyer I couldn’t afford more than $100 per month.  They said that wouldn’t suffice.  I said I was sorry, but we couldn’t afford more.  They said if I couldn’t make ‘acceptable’ payments the suit will go forward.  I said, it wouldn’t make a difference, we can’t afford to pay it.  They said the judge will then place a judgement against us.  Which from my understanding is usually double the actual requested amount.  Thus we would then owe more than $6000.  I laughed and said that paying that would just be more impossible for us.  So stupid!  If I can’t afford to pay you $500, how can I possibly pay you $6000.  I’ll have to call a lawyer for help and that won’t be cheap!mental healthHave you ever been so sorry for doing something?  Buying that house was such a big mistake!  But I didn’t know I’d have a breakdown and have to leave my job only two years later.  There is always so much more to a story, right?  The human story that financial institutions and lawyers are hard wired to ignore the human aspect of a situation.  They are acusatory in their tone, nu-apologetic at their approach with you.  As far as my bank and HOA can see I bought a house I couldn’t afford and I should be punished for becoming disabled. Today I feel like my life is taking a very negative turn and I am glad I have an appointment with a shrink next week.  I hope he can recommend a good therapist.

MS Reality Check

Last week the neurologist didn’t give me anything for this flare, since I was already improving when I saw her.  I’m about 80% normal right now.  I’m not taking 4 hour naps, and I’ve even been able to walk around a short block, and make a quick trip to the store.  It’s nice to be feeling better.

weedI didn’t find out much on paying for a new prescription.  I spoke with one of the helplines and my doc has to submit something to them, then they will see if I am eligible for any program.  If I don’t then I’ll investigate one of the other drug programs.

I’m trying hard not to be upset with myself for stopping my treatments.  I guess I had to prove it to myself that the drugs were really doing something, and that I really had MS and it could be just as bad as when I was first diagnosed.  It’s strange, but I felt like I really wasn’t sick at all, and felt sort of guilty somehow that others were so bad off when I felt fine.  Isn’t that ridiculous?  I felt guilty about not feeling bad.  What’s that mean?

So today they called to schedule my MRI.  That’s next Tuesday.  Actually, they will do three of them.  I’ll get there at 8:00 AM and won’t leave til about noon.  They said they didn’t usually do all three on one day because it’s so long, but since that’s how I’ve always done it, they agreed to do it in just one day.  I’d much prefer to get it all done in one visit.

Then on Wednesday I see the neuro again, and on Friday I see my new psychiatrist.  Finally, I’m getting a handle on my medical conditions since the move.  It only took me 9 months.  Kicking and dragging my feet at each turn.  I haven’t been seeing a therapist, but I decided I will also find a new one and see them for a few months at least.  Get myself back on track.  Then, maybe after I’m on the new drug I’ll be feeling good enough to go back to karate.

Drugs and Doctors

Saw the neurologist yesterday.  I like her, she’s tough, gave me a hard time about taking better care of myself, and less know-it-all than the other neuro I saw.  He made it seem like he thought my diagnosis was wrong, that maybe my previous doctor was a quack.  I guess I shouldn’t take that wrong.  After all, there are plenty of quacks out there and they don’t know me well enough to know whether I knew a quack if I saw one.  But Dr. L’s demeanor was candid, stern, and didn’t question my previous care as strongly.

Dr. L was also patient, informative, and took quite a lot of time with me, for which I am grateful.  She also told me things about my health that no one had previously revealed.  I don’t know if that’s a good thing.  She mentioned though that according to the report on my last MRI, which I had provided, I have some disease damage to my eyes.  Sort of shocking to hear that.  I’d read the report (not that I understood it) and didn’t know it said anything about my vision.  She said she will authorize some tests to look at possible progression.  She’s also ordering an MRI, some blood work and some nerve conductivity tests.  I go see her in two weeks, unless I don’t continue to improve as I have been since Wednesday.

We talked about why I stopped taking Copaxone (a daily injection), and how I am likely in relapse now because of that.  I told her that was sort of what my last neuro said about quitting Copaxone.  I told her I would try one of the new drugs if I relapsed, so looks like I’ll be adding another drug to my pharmacopeia.   I’ll have to consider the co-pay I’ll have in the decision.

I looked up my cost on these drugs.  It’s taken me 24 hours to process: Minimum $2000 per month.  Criminal.  Especially since I cannot get the pharmacy-offered discount since I am on Medicare.  The thing is Medicare doesn’t provide drug coverage any more.  I’m paying for that insurance out of pocket.  Maybe that means I’ll get the discount, but I’m thinking not.

Mini Rant: I thought a lot of the drug research was already subsidized by the government, and then they want to make a billion dollar profit off sick people!  There is now a cure for Hep C.  A real miracle cure.  The cost of 3 months treatment? $90,000!  That’s $1000 per pill!  Needless to say, millions of people with HepC are being turned down by their insurance companies (Husband among them).  The excuse?  Not sick enough.  My husband personally knows/knew 7 people who have/had this. Three are dead, and a fourth nearly died more than once trying to treat the disease.  It can turn nasty very quickly and once the liver is damaged, well it’s not like it’s self-healing.   Why are these people even bothering to develop new drugs?  Who is supposed to benefit?  Sick people or Big Pharma?  You’d think they’d make it a little more affordable, since frequent flares are really costly to treat.  Not to mention the damage flares inflict on a person’s CNS, leading to disability.  Can a corporation care about all the lives lost to untreated cancers or liver damage.

As for me, I’ll let the neuro know my decision and why when I see her in two weeks.  I don’t think I’ll be too badly off, but it could be the Copaxone was keeping my relapses down to zero.  The first two years after my diagnosis I had many courses of steroids and other treatment, for my symptoms.  It is what it is and I’ll hope for the best.  Who knows, maybe more research will show me some way to afford this.  The saddest part though, is I know there are so many people sick and unable to afford any therapy at all.  Like I said.  Criminal.

MS and Time on My Hands

Stuck in bed again today and feeling worse and can’t get in to see my GP, so Husband took me to Urgent Care.  I saw an amazing Nurse Practitioner, who immediately upon hearing I had MS said it was most likely a flare.  She was a bit surprised I didn’t realize it and was good enough to let me know feeling this weak and fatigued could not be the result of anything else.MS logo

They ran lots of tests; glucose levels, checked for anemia, checked my thyroid function, even an EKG, since when I exert myself, say walk to the next room, I feel as though I’d run a mile and breathe very hard and fast, and my heart races.  All the tests showed nothing was wrong, helping confirm the NP’s diagnosis of MS flare.

I feel sort of stupid, and I considered this might be a flare, but since I’d never experienced this before, and hadn’t had a flare since 2009, I didn’t really connect the dots.  The Urgent Care referred me to the same neurologist I had seen and didn’t like.  I told the NP that when I went to see him before he made it sound as if he wanted to do all the tests and diagnose me again.  The NP said, yes, that would be normal procedure.  I have an appointment with the neuro on Friday.

Chateau de Gudanes, dating from the 18th Century

Chateau de Gudanes, dating from the 18th Century

Since I am basically bedridden until the neuro prescribes some sort of therapy, I’ve been playing on the ‘puter and discovered this:  http://www.chateaudegudanes.org/the-project/.

It made me think about my blogging friend, at https://justmerveilleux.wordpress.com/.  He and his partner recently relocated to France and purchased property there.  He’s posted a few photos of their new place, and when I looked at the Chateau de Gudanes, I thought of them.  Not that they purchased a chateau, but it is a grand home and very old.  I am still awaiting photos after they are all moved in.  I’m eager to see what Justmerveilleux does with decorating the place.  He showed photos of their last place and it was amazing.

Fatigue and Weakness

I’ve been feeling weak-legged and exhausted the last two days.  Sleeping more than 10 hours a night and napping up to 4 hours.  The family is concerned and so I made a dr. appointment, but can’t get in until next Tuesday.  I don’t think it’s anything too concerning, but I’m not getting much done and can barely make it downstairs, let alone do any errands, or take the dogs for a walk.  We are supposed to go up to the house Thursday and go through it with a realtor (we’re doing a short sale), but I don’t know if I’m going to make it.  The biggest question of course is what is causing this fatigue?  A bug?  MS?  Hypothyroid?  Menopause?

is-this-menopauseI had a bug for the first two weeks of January, where I was nauseous and fatigued, unable to do much, but this time the fatigue is much worse and while I have no appetite, I am not nauseous.  Of course, if it is a flu or something, there is not much I can do about it.

MS?  I still haven’t gotten set up with a neurologist yet.  I saw one a few months ago, but didn’t like him, then the insurance changed, and well, here we are.

My thyroid seems the most likely culprit.  I’m hypothyroid and already taking meds for it, so might it be getting worse?  Family doesn’t really want me to wait to see the doc, but in researching possible causes I found mention that if the fatigue doesn’t improve in two weeks to see a doc, so I think I’m ok waiting til Tuesday.  thyroidlady

If it’s menopause, there isn’t much I can do. I’ve had such a rotten time of it, and it’s not getting any easier either.  I have upwards of 15 hot flashes per day, and sweat all night, for two weeks at a time.  Sort of PMS-like, with what they call “Phantom Periods” where you have all the joy of PMS and none of the relief.  Most information you will find on menopause tells us that it usually begins by age 50-52, and is considered to last between 4-5 years by most doctors, but up to 15 years based on more recent studies.  I’ve been having issues for 14 years already, and getting more severe each year.  Two years ago I had my hormone levels checked and my Gyn told me I wasn’t anywhere near menopause based on the results.  Really?  After more than 10 years?  I really feel like I am the only woman on the planet who will still be having hot flashes and periods into my 70s, or worse!  I’m ready to have a complete hysterectomy just to get past this.

Did you know there are 35 symptoms of menopause?  Of those 35 I experience a good 30 of them.  It just doesn’t seem fair to me.  To have dealt with mood swings, depression, etc., all through my ‘reproductive years’ only to be unable to find the relief Mother Nature promised me.

On the good side of things, I have at last dropped 30 lbs!  I almost have my waist back–though I realize it will never be 26″ again.

Hibernation

Although the weather is not conducive to real hibernation (it was in the high 80s last week), I find I have been withdrawing again.  Things are good and I’m pretty sure I am happy and content, but I dropped karate and haven’t been taking any classes.  In fact, a couple of weeks ago I discovered some computer games I enjoy.  I spent hours a day on these stupid things, but was really enjoying myself, until I realized I wasn’t doing much of anything else.  I hadn’t been reading or posting and after a couple of weeks I decided that it wasn’t really good for me to continue with these computer games.  So, here I am again.happy

All in all this year has started out pretty well.  We had friends over for a BBQ the end of January for my birthday.  I turned 54 and for the first time since turning 50 I wasn’t depressed on my birthday.  We had a great time, lots of laughs, a little weed and some good wine.  For the first time since we were newlyweds we are seeing friends often.  It has greatly improved our lives.  I feel a little less like the friends are his friends (though I have known most of these guys more than 20 years).  It hasn’t been easy.  I hear the stories about their youth, the reminiscing about things I never saw or did.  It was very hard the past couple of years not to feel jealous of this group of friends.  I am still jealous, but I am no longer disturbed by it.

I think my biggest issue is that I lack drive.  Or so it seems.  But if I am content, I guess it’s ok.  Now if I would just get to the other side of menopause, I will be one happy camper.  More on that later.

Knitted Bedspread

DSC00401Here are some photos of an old bedspread we purchased at an antique store recently.  A Christmas gift from my husband.  I’d always wanted something like this, but old textiles, I have learned, can be quite expensive, so I’ve never found one I felt was affordable.  But here was this amazing piece and only $50!  On the way home  I wondered what kind of shape it was in, as we did not unfold it at the store.

DSC00397

Left side head seems incomplete.

It appeared to be complete, at least it seems as if the person making it, never quite finished, but I’m not sure.  You’ll see what I mean when you see the photos.  For example, the top right head looks finished, while the left side seems incomplete in that it’s missing the little tag.

Top right hand portion of the trim.  The head of the spread is flat, while the other three edges have a beautiful trim

Top right hand section at the head of the spread. The trim ends neatly. The head of the spread is flat, while the other three edges have a beautiful trim.

My reason for this post is to ask you wonderful people if this is a valuable textile and should be treated with special care, or if it really is worth only $50 and I don’t need to worry overmuch about my dogs laying on it.  I question the value because of the detail involved in this piece.  It is by far one of the most complicated knitted object I’ve ever seen.  I am putting it on my bed every day, but after having it only a few weeks I notice it already looks a bit yellow.  I’m worried about how to properly clean it.

There are a few flaws, some loose stitching, the apparent incomplete boarder.  I thought about taking some white thread and fixing a couple areas, but I’m not sure I should attempt it, since I’m not a seamstress, and certainly can’t knit.

One of the flaws.

One of the flaws.

Center flower.

Center flower.

I say this is knitted only because we showed a sample piece to a woman who has been knitting and crocheting for probably more than 50 years (she’s at least in her late 70s).  She said she could not figure out some of the stitching, especially the raised flowers in the center of each little block, and on the trim.  She said she was pretty sure it had been hand knitted by a very skilled hand.  It brings to mind a wedding.

Border

Border

I’d appreciate any comments or questions.  I can take more photos and even considered doing a short video of it and sending it to someone for an appraisal.  This is my first step.  I’m hoping one of you lovely people will take an interest and have knowledge about this masterpiece.