Thursday, February 7, 2013

The Cleveland Clinic Trip

Well, my mother is doing a little bit better.  We've had some ups and downs (and I'm sure there are more to come), but today her color is better and she was opening her eyes and looking at people better than she had been before.

I was happy to be able to walk up and down a few stairs in the hospital.  I'm doing pretty well.  I'm going to try to exercise for a few minutes at a time tomorrow.

I've been pretty busy--Cleveland Clinic Tuesday (more on that in a minute), all kinds of shopping yesterday (our tax refund came in--time to get the girls a couple of articles of clothing or a pair of shoes, buy a few things for the house, get the kitchen stocked up--go to the dentist, get the brakes tuned up on the van, etc.).  Today we went up the the hospital to visit Mom and to the library.  Meanwhile I've been trying to keep the housework up in between going places.  I've been a bit tired lately--maybe it's just that I'm still recovering from the flu.

The Cleveland Clinic was good--my husband came along to play his ongoing role as the six-foot-two bobble head doll.  I say I'm sick and he nods his head up and down.  While with my autism and lack of 'normal' expression, I don't think I come across as believable, my husband does.  He has credibility.  And I think it helps just to have another person agreeing that I'm sick.  Maybe it even helps that he's male.  Women do get labeled as hypochondriacs more often than men.

So the doctor believed that it's not allergies, and seemed to take me quite seriously.  I had a couple of breathing tests, some subcutaneous tests on my arm, a cat scan, and three vials of blood taken.  I'm even getting tested to see if the pneumonia vaccine I had a few months ago 'took'.

I almost laughed out loud when the doctor turned to me and informed me, "Your asthma is poorly controlled."  I managed to get by with a, "Yes, I know."  But he really seemed like a good guy.  And he knows more about what's wrong with me than I do--a pleasant change of pace for me.  He had a definite reaction to my former specialist having said I was all better.  Most doctors don't even know how ridiculous that statement was.  But this doctor did say that he can basically 'cure' me, or at least bring the symptoms under control.  I'm sorry, but I've heard it before.  With each doctor.  He gave me a new inhaler.  It's this year's new inhaler, so I haven't tried it yet.  But maybe I can at least get an accurate diagnosis, and maybe, just maybe, I can get at least a little bit better control of the asthma.  As for the immune deficiency, I don't think Tricare even covers the IVIG treatments.  That is, if what I have is CVID and not Selective IgA, or something else entirely, or nothing at all.

And I got a card from one of the people I bitched and whined about in my last post.  I sent a short email back.  I'm just barely stupid enough to think it will do any good.  I suppose it's best not to burn bridges, although perhaps some bridges should be burned.  Burned, blown up, and the wreckage hacked to bits.

Tomorrow we'll have the second day of homeschooling we've had this week.  It's been a bad year for attendance so far, but we've been so good in general that I don't feel too badly about it.  One of my homeschooling philosophies is that my children should learn what's really important, and visiting my mother is really important.  And getting me on Social Security is really important, too--someday it just might keep a roof over my children's heads.  Not to mention taking care of my health might be a good idea.  And if it is IgA deficiency, any or all of my children could have it.  You can be completely asymptomatic and have this.  You can also pass it on to your children.  One of my girls has had several serious illnesses and severe asthma attacks over the years.  Even my sister and/or niece could have it.

And then this weekend my husband has guard.  By then I'm probably going to feel like I can use a bit of a vacation.

Friday, February 1, 2013

I want to retire to an island x--(

Well, we have some almost hopeful news about my mother.  She's been opening her eyes and looking at people.  When I took my children up to the hospital to visit this afternoon, she looked at us, too.  She looks terrible.  And she's still on a feeding tube, and dialysis three times a week, and IV antibiotics.  They're starting to talk about physical therapy, and about whether or not she'll be able to go home with my father (who can take care of her if she can be cared for at home--he's been doing it for a long time now) or go to a nursing home.  She's not out of the woods yet, but there has been some improvement.

Mom is in an acute long-term care facility now, and it's in a location I'm quite familiar with, in another hospital.  They even have free valet parking, which is really, really nice for somebody who can't walk more than a few car lengths in the cold without having an asthma attack.  And when my father asked if I knew where the elevators were, I had the perfect excuse--I'd never been through the hospital's front door before.  I always go in through the emergency room.

I get a little bit better every day.  I can't be outside, or exercise yet, but I'm more comfortable now--my chest isn't as tight, I don't cough as much, or breath as hard.

I had a crabby discussion after we came home from the hospital with my general practitioner's office staff.  They hadn't wanted to send my medical records to the Cleveland Clinic.  I'd finally talked them into it, and today (wisely, if I do say myself) I checked with the Cleveland Clinic to see if my records had been received.  Guess what.  They hadn't.  But not only had the records not been received--my GP's office staff had never heard of such a request.  And when I told them I wanted records for CVID and asthma, the response was, 'so you want the records for asthma'.  They don't know what CVID is (and why on Earth would I want to go to Ohio to see a doctor whose staff may have actually heard of what's wrong with me?).  They couldn't understand why I'd want to go to the Cleveland Clinic when my GP hadn't recommended it.  Not that he'd been against it when I'd spoken to him after making the appointment.  He's always been supportive.  Otherwise his staff would have chased me away by now.

And then....

I've given some thought to posting about this on the blog.  I won't be naming any names or going into a lot of detail.  At least, I don't think I will.  Not today, anyway.

I'm very fortunate to have the family I have.  They're not perfect people, but they're about as perfect as any others I'm  likely to find.   And they're not abusive--not physically, and not emotionally, either.  They're my favorite people. :)

However, there are other people in my life who aren't so nice.  One of them is actually quite physically abusive, although I haven't been a victim.  I've been threatened, intimidated, stalked, and talked about behind my back, but not assaulted.  The others have contented themselves with simply treating me like dirt and refusing to speak to me.  And, wouldn't you know, they picked this time to rear their ugly heads. 

They don't know that I've recently given up Christianity.  At least one of them would get extremely upset about it--I'd bet all the cash in my purse.  I'm refraining from mentioning it.  At least one knows about my friend 'dumping' me two months ago.  I'm not certain they know how sick I've been this month.  They do know about my mother.

These are people I've basically cut out of my life as much as possible, mostly because I've gotten used, over the years, to being in possession of what little sanity I have, and I don't have any desire to part with any more of it.  Over the last couple of years I've seen them rarely, and not spoken to them by phone or email more than a half a dozen times, out of necessity.  And they've chosen this week to decide that they are unhappy with me about this.  Of course, it wouldn't occur to any of them to offer an olive branch of friendship--instead they've spoken to another person in my life about how I should be talking to them, and about how this situation is all my fault.  They don't understand why I don't talk to them.

There's also been some dispute about my mother's medical care--whether or not her situation is hopeless, whether she should continue to have medical care or be allowed to die.  (This started just before my mother started opening her eyes, which they may not even know about yet.)  They're thinking that my father should let her go. 

This is not remotely their decision.  There is a prioritized list of people who could make this decision--a power of attorney, then a spouse, then children, etc.  And doctors certainly have a lot of input.  But these people who have made my life miserable these last couple of days are not even on the list.  And unless something unthinkable happens to my father, I don't have any legal right to make medical decisions for my mother.  If I thought my father was making bad decisions (and I most certainly don't, and neither does my sister), my only recourse would be to get a lawyer.  But 'these people' (as I'll refer to them) are not letting my lack of decision-making authority stop them from getting upset with me.  I just don't know what to say about that.  Words like 'appalled' come to mind.  'Disbelief'.  Even though I didn't have any illusion about these people having warm fuzzy feelings for me (or I for them), I'm a bit stunned that people could behave this badly.  I shouldn't be--I'm old enough to have been around enough people by now to know this.

No matter how old I get, I don't think my fellow human beings will ever lose the ability to astonish me.

Some days I think a literal island for Erika would be a good idea.

I had a vivid dream about an island, just a few days ago.  There were people on the island, a campfire, food, music--a regular party.  And I stayed away from them.  A couple of them even asked me to join them, but I wouldn't.  Because I knew it would be hopeless to try to join in the fun.  How depressing, especially since it has such a ring of truth to it.

I had a talk with God last night.  Of course, I don't know which God I talk to.  But we do still talk.  I told him (her? it? them?) that I don't like the way things are being run.

I don't know why I would be feeling depressed....

And tomorrow morning I'll get myself out of bed and try to have a better day.  Today was a bit better than yesterday.  And any time my mother is a little better, that can't help but make my day a little better, too.