Doctors

Doctor #1

Saw my neuro this week.  She doesn’t think I have MS.  Just because certain diagnostic tests don’t show the expected results, my flares have been documented.  I had one flare that lasted 6 months.  I was treated with the standard MS flare meds by IV for three days, every month for three months.  If that wasn’t MS, tell me what is, doc.

Yet she continues to treat me, because my diagnosis came from UCLA, which has a specialized MS program.  Still she has me coming in every six months.  When she asks me about new symptoms, she dismisses them as not MS-related, and therefore not her problem. I guess if I’m not blind or in a wheelchair, I’m not worth her time.   She will be replaced.  I can see someone else in that office.  Why did it take three days for me to realize this?  Why didn’t I say something to the Doc?

Doctor #2

I’ve been having an eye problem where it felt like my eyelids were sticking to my eye balls. This has been going on for a few months, and wasn’t getting better, but not a real big deal, eye drops seem to work. So brought it up to my GP.  So she looked a little more closely at my eyes, and had me read the eye chart. I’m really shocked. If you measure by number of lines of the chart, my vision has consistently been only one line apart; my right eye is a tad better than the left, which has an astigmatism. This time it’s 4 lines! I can only read the second line of print with my left eye. I’m a little concerned and say as much to my GP and she gets me a rush referral to the Ophthalmologist.  I really like her.  I want her for my new GP, my old one is moving.

Doctor #3

I couldn’t get into the Optho until mid-March, so they referred me to another office.  I call and get an appointment for the next morning!  Wow, cool.  The doc examines my eyes, pretty much a routine exam, I read the eye chart, he dilated my eyes. He seems thorough. He tells me that I have an issue with glands in my eyelids not working.  I never knew there was anything except lashes on my lids.  These glands are supposed to secrete oils necessary to keeping eyes naturally moist.  He gives me a script for Restasis, and gives me a list of three more eyedrops I’m to use everyday for the rest of my life.  Four different types of drops, basically I’m to put drops in my eyes about every two hours.  Ok, it’s inconvenient, but not really something I can’t adapt to.

That’s when I ask him, “What about the sudden decrease in the visual acuity in my left eye?”  He shrugs, looks at my chart and sees I got new a prescription in my glasses Nov. 2015, so I should wait till this November, when my insurance OK’s new glasses.  I’m not really thrilled, but I figure he’s the doc, I trust that it’s not a big deal.  I go home.

Then yesterday, I’m updating my calendar and find the doctor’s card, which I just grabbed and put it in my pocket as I left.  I only read his name, not his title.  This time I read the title.  He’s an optometrist.  I had a referral specifically for the ophthalmologist. When I made the appointment, I assumed since they knew I couldn’t see the ophthalmologist in my office until March, that I would be seeing theirs.  I could have seen our optometrist, who I’ve been to before.

It’s been two weeks using all the eyedrops and my vision in that eye seems to be getting worse. My vision seems blurry, colors seem to merge and shift?  Can’t describe it. Suddenly I can’t properly identify a certain size or shaped or colored object until I am two feet away. This is not normal for me.  I’m worried this is not the dry eye issue, this might be the Fuchs Dystrophy I was told I had 20 years ago.  It’s a slowly progressing problem in the cornea.  When it gets bad enough the only option is transplant, but that’s still years away for me.  I hope. (Hmmm.  How likely is it that Medicare will pay for that by the time I need it?)

Then I talk to my brother, who I haven’t seen in 25 years and he mentions one of my sisters.  Says shes going blind.  Now I’m worried again.  I haven’t spoken to A in 25 years either, but I’m going to have to talk to her.  I think since my referral is good for two visits, I’ll just keep the appointment in March with the ophthalmologist.

What the hell is wrong with me that I don’t notice these things?  I used to be so thorough.   But I never asked the office what type of doctor I was seeing, something I once would have made sure of.  I used to speak up for myself, and I honestly don’t know when that disappeared.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Feeling Negative

I’ve been feeling rather negative lately.  Perhaps I am depressed about my back, which causes me pain daily for the past 6 months.  Standing at the sink for the15 minutes to do the dishes and my back is screaming for me to lay flat, or at least sit down.  The doctors do not seem overly concerned.  The last appointments I had with all three of my docs I felt I was dismissed.  They all said, ‘see you in # months’.  Made it sound like an order.

My back is causing me not to do things, like walk, though I can last longer than standing still for some odd reason.

Beach yoga

Beach yoga

Some days I can walk an hour before it starts to ache.  But at night, doing the cooking and washing after, I’m in pain.  I keep trying to get to yoga and tai chi, but the timing just never seems to work out.  I’m thinking about making up a schedule and promising myself I will keep to it no matter what for the month of November.  I know that’s a lofty goal: Committing to improve my health.

I do have to.  Improve my health and that of my family.  We had all promised (many times, very many times) to eat better, treat our bodies like the temples they are.  Love our bodies as much as a spouse or child.  If we loved our bodies would we treat them better?  We seem unable, individually or as a group, to eat a more balanced diet.  We are addicted to sugar.  Most people are to some degree.  But today I ate an entire 1 lb bag of candy corn.  I had been angry at Husband when I bought it.  So instead of sharing this treat, I devoured it in secret throughout the day.  Yikes!  If that’s not a sign I need to change, I don’t know what is.  I’ve been doing things like that a lot lately.  Buying candy bars on the sly when off shopping by myself, then go out for an ice cream with Husband that night.

I’ve lost weight, mostly because I just don’t find anything very appealing about food lately.  I can go days without feeling hungry.  I want to keep the weight off, but by improving my diet.  Coincidentally, the liver doc told us sugar has been shown to be more addictive than heroin.  Scary right?  I’m a living example of a sugar junkie:  using excuses to justify eating a chocolate, lying to people about it, hiding my binging from family.

candy

My nemesis

I must take better care of myself, but lately I just don’t care.  If I were a day, I’d be chilly, damp and overcast.  The sort of day that won’t necessarily stop you from doing the things you have to, but nasty enough not to do things outdoors that you might want to do.  Like picnic.

They say the first step to beating addiction is admitting you have a problem.  And I honestly do.  I seem unable to stop myself from eating nothing but what’s bad for me in every way.  And I so don’t want to give it up.  But I’m promising myself, and using this blog to hold myself to it, the month of November will be my test, but I will try not to put anything in my mouth that is not healthy for me starting now.  I tell myself, I would do these things if I had cancer, right?  That’s what you do when your life is threatened.  Start taking better care of yourself.  Why invite cancer into my life by sabotaging my own health?  Why wait for a fatal diagnosis?

She Sells Sea Shells

Well, it took me a little longer to get these done than I anticipated.  Seems like I’ve picked up the shakes when doing fine handwork.  Very tricky threading a needle when my fingers are shaking in opposite directions.  But I got three pair of earrings done before I quit for the day.  Not sure I really like the results.  I’d be interested in any opinions.

First set I did. I sort of like these.

First set I did. These I really like. All white and crisp.

Another view of set one.  These are very long, I haven't measured, but they're likely close to 3" long.

Another view of set one. These are very long, I haven’t measured, but they’re likely close to 3″ long.

This was my second attempt.

This was my second and third attempt. This was the intended result.

Another view of set two.

Another view of set two.

These were actually a mistake. Some beads fell off as I finished the first one, and had to make a second to match. They were originally to be my second set.

These were actually a mistake. Some beads fell off set two, and did not realize until I finished the first one. Rather than waste the materials by taking it apart, I decided to make a second to match. Then I went back and created a second earring for set two.

Another view of set three.  These seem a bit plain to me.

Another view of set three. These seem a bit plain to me.

I’ll probably put these up for sale in my online store, even though I don’t care for some of them, others might.  Right?

I have been on WordPress more regularly lately, and bringing out my jewelry making supplies and working with my hands has started to make me feel much better.  I’ll have to try doing more tomorrow, earlier in the day, maybe my fingers won’t tremble so bad.

Emotional Well-Being

I need a prescription for Xanax or Valium or some sort of anti-anxiety drug.  Not that my docs agree, of course.  My emotional stability is of no concern to them.  Only my physical being.  That pretty much includes my shrink.  It is so hard to find a psychiatrist.  It is a very personal decision, picking a doctor.  When your insurance doesn’t provide you with options, however, you are basically screwed.

DI buttonsSo my shrink is merely a drug pusher, merely refilling the ones I have and making sure I check in every three months.  I have seen at least three crappy psychiatrists, and one great one.  I’ve had four therapists.  Two were pretty good, one was downright a waste of my time, my last one was absolutely the best.  Guess that’s why I’m so picky.  I know what a good therapist can do, and I know that a poor therapist at a minimum will not help you, and a bad therapist can seriously hurt you.  Again, my insurance only provides one therapist to choose from.  I met with him once, and am pretty unsure about him.  Don’t know that I really need one.  Still after my breakdown last week, I’m not sure.mental health

So I am stumbling through this emotional minefield on my own, my poor family unable to help me.  Except husband has a script for Xanax and he demands I take them from time to time, like today.  I’ve been sort of snappish.  Actually, I’ve been snappish for the past couple months.  Moody, depressed, angry, anxious, and a bit pissy with my reactions.

Of course, the reason for my moodiness is one of so many things, it’s hard to know where the root problem is.  I suppose it’s menopause, but I’m not convinced it isn’t due to the change in one prescription, and the addition of two new ones.  I haven’t had time to check all of my meds for emotional side effects, but I’m working on it.

Meanwhile, just to keep the rest of the family from hiding from me, or vice versa, I’ll continue to self-medicate with Husband’s Xanax.  At least until something changes.  Which it might, since it is enrollment time with my insurance and medicare, so who knows what kinds of changes will be coming my way.  Trying very hard to be Buddhist about it.  Trying to just let things go.  I work on believing that everything happens as it should and nothing is permanent, not even the US.  om

I struggle trying to balance my love of Bernie Sanders and hope for his election, and even plan to go watch the upcoming Democratic debate.  Part of me feels this is so important.  So integral to what is wrong with the US government, and putting my hope in Bernie Sanders. Though the cynic in me believes no such thing.

tai2When my Buddhist side kicks in and I  wonder; will anything I do really make any difference in the greater scheme of things?  Even if by some miracle Bernie gets elected, do I really think he can face the Regressives in Congress and make any real changes?

I can feel a political rant coming on, but to what end?

Congress has been thwarting every Democratic move for each Democratic president we have had for the last 15 years. Will our next Democratic president, regardless of who they are, actually be strong enough to kick the Kochs and the rest of the corporations out of politics?  Will he/she ever be able make churches pay taxes?  And what about the voting laws changing in the South East US, basically stopping people from being able to vote because they have no proper ID, and then close all the government offices that handle IDs in the area. The people in the south have been so manipulated and kept so uneducated, they have little chance of making any change on their own. Sort of leaves you wondering?  Just as in the Sixties we had to stage protests and strikes and sit-ins.  Peaceful resistance.  Am I using my Buddhist mindset just to stay uninvolved?  I suppose a lot of people would see that as a cop-out.

Today Was A Good Day

Feeling better!  Son and Husband talked.  Son and I talked.  I think Son understands a little more about how I am unable to handle the anger of other people.  Especially the explosive anger he shows.  I realized the reason is likely from my dad, who had a very bad temper when I was young.  I won’t give a lot of details, but he made all us kids watch as he beat my brother with a belt.  I was no more than six and I remember being really terrified.

DSC02716We were going to go whale watching, but didn’t make a reservation, and they were full up for the next four days!  So instead we drove down to the Wedge (http://www.visitnewportbeach.com/beaches-and-parks/the-wedge/).  I’ve only seen it once before, but from the highway.  This time we walked on the beach and watched the surf and the surfers for about 2 hours.  Quite impressive and the waves were not very big, though a couple looked pretty close to 10ft.DSC02699

I shot nearly 300 pictures.  I saved 30 of the best ones.  Of those, maybe 10 are actually pretty good.  PURE CHANCE!  My camera skills are still pretty poor, and I cannot see anything in either the viewfinder, or the little screen on the back of the camera. Not in high sun, glare off the ocean and the white sand.  Impossible to see.  So I figure actually getting about 10 decent shots–without knowing what was in the frame–as pretty decent day of photography, but there was certainly no skill involved in these.

The coolest thing was finding lots of shells with holes in them!  Naturally made holes and all the same type of shell.  I have enough to make about 12 pair of earrings, and maybe a pendant or two.  I’ll be working on these tomorrow and hope to post my results.

May you have the hindsight to know where you’ve been, the foresight to know where you are going, and the insight to know when you have gone too far.                                                                 –Irish Blessing

The Many Joys of Aging

Really, there aren’t any.  Aging is a difficult process, especially after about 50 years.  Your life begins to revolve around health issues, doctor visits, tests, and too many prescriptions!  It can get very disheartening.

kneesSo far this year we have dealt with:

  • two MS flares and a general increase in symptoms and subsequent increase in medications
  • kidney stones of epic proportions (not really, but they were big enough) which included numerous doctor visits and several visits to the ER
  • knee issues, as yet unresolved. (The docs say the arthritis “isn’t that severe” yet the pain is.  The cortisone shots and the Synvisc treatments have been a bust)
  • ER visits with Son for anxiety, and back pain
  • Social Security benefits issues
  • Medicare questions
  • Medi-Cal problems
  • mounting medical bills
  • fear of having to move from our beautiful little upstairs apartment, because Husband’s knees are so bad

And that’s just the three of us.  We have also been dealing with Mom’s care.  We have found she is now without funds sufficient to continue to live in the home where she has been for two years.  We just discovered she has not been receiving her husband’s naval pension benefits.  I had started all the paperwork for her to receive that after her husband died, but she started to hoard the paperwork and would no longer let me help.  Now I have to start over, and try to push the issue to get her some financial help quickly.  She can no longer pay her rent.  Preliminary info on military pensions say that they are not generally passed down to widows, unless the vet paid into the pension to do so, but we haven’t found if that may be the case.  I only know Mom never finished the process, choosing instead to ignore it.  Now, of course, it’s MY problems again.  Yippee!!

pillsLately I have been hating my life and having trouble staying positive.  I’m now in pain every day, though mostly mild.  I now take 7 different prescriptions.  My emotions are raw and I cry at the least provocation: sad movie, sad book, imagined slights. Hormones?  Who the hell knows?  It could be PBA caused by the MS.  It doesn’t really matter the cause.  It’s just a new thing to cope with, or possibly to add a new prescription to my growing pharmacopoeia.  Something I sincerely do not want to do.

My last visit to the neurologist we discussed the constant esophageal spasms, and she said it is likely NOT the MS, but GERD!  Really?  I always understood GERD hit you at night, and was very painful.  The spasms are not painful, but constant and uncomfortable.  Imagine a fist through your chest squeezing your esophagus.  Now I need to see a gastroenterologist to determine the cause and find a remedy in the form of a pill.  Ugh!

I know my problems are minor to so many of you dealing with serious illnesses and looming death.  I’m just so disheartened today, having difficulties seeing any light at the end of these tunnels.  I’m just venting here.  No comments are really required.  I know we all have our bad days, and today is one of mine.

On Health and Long Absence

My life here near the beach has not been the idyllic retirement.  We have no schedule so I never know what I will be doing next. Husband gets itchy feet and off he wants to go (usually to spend money we shouldn’t).  Most times I go with him because I know he likes me to.  Sometimes we go out to the beach and walk.  We haven’t taken the kayak out in months.  Husband’s bike is gathering dust in the garage.

beach yogaI don’t know why it has worked out  this way. Why I have little interest in doing much.  In the back of my mind I think it’s the dysphoria coming back, yet for the most part I am content.  But I argue with myself about doing things.  Making excuses for not exercising more. nI’ve gone to yoga at the beach and enjoyed it immensely, but haven’t done it for weeks.  There is Tai Chi in the park I really want to join, yet instead I stay in bed and read.  I haven’t made the friends I had told myself I would. The few women I have met and get along well with have full lives without adding me to their social calendar.

Some of my excuses for not doing things are legitimate.  I’ve been working with Son on his new business, printing his labels and packing slips, creating and updating his website.  It took weeks to set up his site and I hated it.  It felt like work and stressed me out.  But It needs updating again and I will be trying to teach Son how to do the updating himself.

Husband has been dealing with kidney stones for about 3 months.  It was awful!  To see him in such pain, or passed out on the pain killers daily for weeks. They tried lithotripsy, but the tech was very poor and the doctor could not find the stones.  She ended up going up the urethra to capture only one of the 3 stones.  He passed one of the remaining stones, and the last stone is sitting in his kidney, until just a couple days ago when he started experiencing some pain.  Thank goodness he still has pain killers!ER

I have been worn out this summer.  The heat has been constant, and the breeze has not.  It’s even hot on the beaches!   It does cool off at night thank goodness.  Lots of MS issues with my legs, arms and back.  My gastroparesis is back, though I was told it never goes away, I have been eating normally for nearly 5 years.  So far it has not been too bad, but my appetite is non-existant. Some days just the thought of eating makes me nauseous.  I am down to a good weight and probably shouldn’t lose any more.

I think in the past six months I have visited the ER 7 or 8 times.  Son suffered from serious anxiety attacks and we took him to the ER several times because it was so bad.  During one episode his heartbeat was over 150 beats per minute.  (Later we discovered one of the herbs Son was taking was making his anxiety worse.  He stopped taking it and suffered withdrawals for 2 weeks.  An herb!  Kratom I think it’s called.)  Then there were several trips with Husband to the ER for his kidney stones.  Luckily the hospital is only a mile away, and surprisingly efficient.  I must inquire at the hospital about a family rate.  LOL

defibrillatorAnd, to continue the theme of health issues;  Mom had at least 4 heart attacks in the last three months.  Two of them quite severe.  The doctors were not optimistic about her recovery after the last one, but that was three weeks ago and she seems to have recovered just as she always does. She’s 85 and they did surgery on her earlier this year as well. Incredible.  If I were her I think I would’ve had my defibrillator implant turned off or removed, so the next heart attack would just take me out.  She says she is not done living yet, and at this rate she will see her eldest son pass away.  Husband’s older brother, he has many health issues and is on very high doses of painkillers like oxycodone.  He’s had a couple of strokes, the last one was pretty bad.  He’s pretty much housebound, and his poor wife is running ragged taking care of him.

On the positive side, I have gotten back in regular contact with one of my sisters, D.  She is two years younger than me, and was once much more religious than I.  I was happy to discover she was no longer of that mind, and was also closer to me in terms of politics as well.  It gives us much more in common than just being raised in the same house.  We email a bit, and have talked every few weeks on Skype.  It has been very nice for both of us to have a sister again.sister

So that sort of sums up my long absence, but I really miss all my friends here when I am away.  Even if I am not reading or commenting, I am thinking about you often, wondering how things are going.

A New Phase

My new neurologist doesn’t think I have MS!  Most of the tests run on me don’t indicate MS, and I agree with the dr., based solely on test results, it doesn’t look definitively like MS.  She is so unsure about the diagnosis, she took me off the new MS drug I started when I began seeing her, and wants to talk to my previous doctors and see what it is she may be missing.  She knows I was receiving care from UCLA and their level of expertise, so she hasn’t been rash enough to do more than run a whole battery of new tests and question the diagnosis.  But she admits she can’t see empirical evidence of disease.

She’s run nerve conduction tests and she doesn’t see any disease.  She’s tested for ocular nerve damage, and sees none.  She sees nothing significant in the MRIs done of my head and neck.  She doesn’t believe the ‘lesions’ in my brain are caused by MS, not big enough or bright enough for her expertise.  She even ordered an MRI of my lower back, which has never been done.  Just to see if there is a spinal issue that might explain my leg weakness.  She is convinced that the hand pain and weakness in my arms is due to the disc damage and stenosis in my neck.

What I can’t figure out is if she doesn’t think it’s MS, what is the problem?  Simply age-related spinal damage?  No one in my family ever suffered from spinal issues.  And I’ve had the other MS-like symptoms: the trouble walking, the pain in my head and neck, dizzy spells.  The overwhelming fatigue?  I see her the end of the month to discuss the latest MRI and what she decided after talking with my previous neurologist.  I’m pretty curious to see what she’s decided.

I’ve recently joined that select group of people who are in daily pain.  I seem to have developed chronic back pain.  For the last few months my back has often been in spasm, and it’s only getting worse.  For the past couple of weeks the pain begins to hurt as soon as I get up in the morning and the only relief I get is when I lie down.  This is really stopping me from doing things, like riding in a car, walking on the beach.  I can still do most things, but for much shorter periods of time. I am trying to keep up with yoga but so far, not much serious relief from the back ache.  I’m hopeful.

The biggest issue with the chronic pain, is trying to cope with Husband’s decreasing mobility caused by arthritis in his knees.  They haven’t been too bad in the few years since he was told about it.  He was getting steroids injected every six months or so, but can only delay the inevitable surgery.  I don’t have arthritis (that I know of), but I know it is very painful, and between my back and his knee, we’ve barely been getting out of the house.  Though we got a little stir crazy this week, and worked in the garden the past two days.  Husband sees the doc next week and discuss the first step in having knee replacement surgery.  Of course, the big concern is mobility afterward.  We live on the second floor and there is no elevator.  I don’t know how difficult those will be, or if stairs will be completely off limits for a period of time.  It’d be tough for him to just get upstairs and not be able to leave the house for 6 months.  We are not looking forward to it.

I’ve said it before, getting old is a bitch, but it beats the alternative.

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!

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.