A Gentle Reminder

It's just about 6 months since the doctor put me on Aricept for my early onset dementia. The first month, I didn't notice any significant difference in my functioning, so I went online and did some research into proactive steps I could take to slow down what is a progressive disease. I found one website that offered a supplement, called Youthful Brain, and after reading all the literature about it, I ordered a bottle to see what happens.

What happened is that the "fog" in my brain began to lift, although this could be coincidental with the Aricept kicking in.  I still have minor lapses in my cognitive functioning, but that is also considered as a normal part of brain deterioration that comes with advancing age.  I am pleased to see improvement as my fear at diagnosis was "worst case" scenario, especially after seeing my mother's deterioration during her final years.  I am healthy in all other respects to my body, so I feel that gives me a bit of an advantage in dealing with the dementia.

And then today came when … I  got up and showered, dressed, and took off for my bi-weekly appointment in Palm Springs.  I stopped and bought a coffee and an order of churros to share with my therapist, and arrived right on time to the office.  I didn't think too much of it as the clock ticked its way toward my appointment time, but when my therapist didn't come get me at my scheduled time, I was … concerned. I hoped that nothing had happened in her life to keep her from the office, but decided to sit and wait until a quarter past the hour to see if she was just held up  with an emergency.

At quarter past the hour, I walked down the hallway to her office and tried the doorknob, which was locked.  I shrugged my shoulders, decided to leave her a note, and prepared to depart.  Things happen to all of us, so I wasn't particularly concerned, but hesitated when another person came down the hallway to what I assumed was his office.  I politely asked him if my therapist had let him know that she wouldn't be in today, and he looked at me a bit confused, then told me that she never comes in on Mondays.  I responded, "But today is Tuesday and I have my regularly scheduled appointment with her."

"No," he replied, "it's Monday."

You know how your brain does that "rolodex" thing when you are confused and starts whirling through the facts and information that you store within trying to make sense of what  you are hearing? That's what happened to me.  I blurted out, "Are you sure?  I'm pretty sure it's Tuesday."

And, of course, he assured me that it's Monday. I left the office after thanking him for helping me and walked to my car feeling totally bewildered.  I backed out of my parking space, put the gear into drive and started home.  Twice on the way home I made a wrong turn and was momentarily "lost."  I was able to turn myself back around and made it home with no further issues, but I'm completely bewildered by what happened.

I'm at home and feel all "here and now," so I'm pretty sure this was just one incident that may not happen again.  I think that when I got the day of the week wrong, I just internally became a bit panicked and that caused me to make the wrong turns on the way home.  I feel present and not at all confused, but I am home and that's my safe place.  I will continue with my medication and supplement, and focus better on being present in the moment.  When it's time for my next doctor appointment, I'll be sure to include this incident in the conversation if there are any further occurrences like the one today.  One event does not make a pattern, and now that I'm aware that there can be issues, I'll be more alert and double-check what I'm doing and where I'm going.

Five Brain Killers

According to Dr. Sam Walters, who specializes in the brain and aging and the effects of aging, there are five brain killers that, if we remove them from our consumption, can make a difference in such brain issues as dementia and Alzheimers.

• The first is MSG, commonly found as a seasoning in lots and lots of food products.
• Next is aspartame, which is what Equal is and other artificial sweeteners. 
• Third is Sucralose, which is what Splenda is. 
• Fourth is diacetyl, the buttery flavor in microwave and movie theatre popcorn. 
• Finally, fifth is aluminum, a natural toxin found in many food and cosmetic products.  

All five of these brain killers should be removed from our human consumption, but especially if you are an older person who is already suffering from brain deterioration or simply wanting to avoid it. In my opinion, we should remove these products from all of our diets regardless of age or physical condition.

Youthful Brain

I've spent a bit of time surfing the internet looking for articles about dementia and cognition. Pretty much they all have the same info, but I was attracted to one site that focused on "Youthful Brain," a supplement that, according to the doctor's information at the site, will help with cognition.  Of course, that supplement has to be augmented with brain training and diet as nothing by itself will make any difference in the course of the dementia.

I read all the literature that came with the site and which included an article about nutritional changes that can be made to improve the brain as an organ of the body. The article talked about super foods for the brain that can enhance the brain's function, including those things that should be avoided, which includes popcorn at the movies. I took it all in and decided to send for the supplement, Youthful Brain, under the brand name Vitality Now.  I got what's called the "Clear Mind Formula," which is supposed to work to clear out the fog associated with dementia.

The fog is what made me realize that something was wrong when I first started having brain issues. I couldn't remember the simplest of things, like my phone number or address, just absolutely blanking when asked to provide either one while doing business transactions. It was frustrating and irritating, to say the least, not to be able to recall simple, basic life information. That's when I decided it was time to see my doctor and ask him whatever could be causing my symptoms. When he ran a few cognition tests, it became clear that I was started down a path no one wants to walk.

I have been using the Clear Mind Formula, Youthful Brain, for about a month now and I can feel a difference. That fog effect seems to have lifted somewhat and I feel more clear-headed.  Now, that can be a by-product of wanting the formula to work, so it does, but if that's what it takes, so be it. I have even recalled some information appropos nothing in particular, which has been somewhat startling. Today, on the other hand, the clerk at the drugstore asked me for my phone number and I totally blanked, but after thinking about it for a minute or so, I was able to retrieve it.  In the past, what I could not recall was simply gone.

Yes, I am also taking a prescription medication, Aricept, which has shown significant results in slowing the progress of the dementia in patients who use it.  I had taken it for about a month before I added the Youthful Brain formula. Before adding the YB, I still had fog; since adding the YB, I don't have the fog.  I think the two work together well, but perhaps have different foci for their targets. I return to my doctor the end of the month and will bring him up to date on what I decided to do by adding the Youth Brain formula to my treatment plan.  I'm going to stop taking it after I've used up the product I purchased and see if there is any difference not using it versus using it. Then, based on my own empirical evidence, I will decide whether to purchase more of the Youthful Brain product.

Updating:  Just received my newsletter from AARP and found an article about brain supplements. Basically, it says there is absolutely no evidence that any of the ones they tested work, and that it's a big scam. Did reflect that they are expensive and lining someone's pockets with profit. Also, said that it could be harmful. Well, when I use up my last bottle of the supplements (at $50/bottle), I won't get any more.

Updating Cognition

It's been almost a month since I posted about my dementia diagnosis.  At that time, I was still a bit freaked out, but I'm much more mellow now, accepting that it is what it is and deciding how I'm going to go softly into that goodnight down the road.  I'm being proactive and have integrated a few new routines  into my life that seem to be making a difference.

One change has been making sure I am not just present, but that I am leaving the house at least once a day to interact with other people.  This past week, I had my visit with my therapist, lunch and a movie with a dear friend, and I asked another friend if she'd like to go to lunch, which she did, and we had a good time chatting.  I continue to walk the dogs twice a day, and many of the neighbors who know us by sight, but not name, make a point of greeting us.  One day a week I go grocery shopping either at Von's, if it's just groceries, or at WalMart if I need a variety of things not unique to a grocery store.  I am keeping lists so I don't have to remember, and then making sure I stick to the lists when I shop.

My memory game playing has improved and I'm up to Level 30 on Pyramid, which means it's time to find another left-brain activity to engage my brain.  I've done some reading about brain stimulation that says it's important to target both the left and right brain on a daily basis, trying to balance out the amount of stimulation between the two sides of the brain.  I'm using my writing for the right brain, including reading FB posts and responding in a sentence to those that interest me, rather than just clicking "like."  I've connected with many former students and have had "conversations" with them, which has brought back a lot of memories from the past. One piece of information intrigued me when I read about the benefit from coloring as a right brain activity because I've been coloring for the past several months just because it felt good to do that.  Glad to know I was getting some tangible reward for the hours spent.  I'm going to get a book of crossword puzzles to work on as that seems to target both the left and the right brain, and integration is good.

I also did some research online about brain activity and was captured by a Dr. who is at www.vitalitynow.org. He talks about the top 12 foods that fight brain aging and includes both hands-on activities and diet/exercise activities to help keep the brain active.  He sells a product, Youthful Brain, which I bought to add to other specific changes I'm making in my diet/exercise day plans, and I'm monitoring to see if there are any changes I can see/feel/measure.  He recommends N-back testing, which can be found online, and he gives it glowing reviews. He also stresses that there needs to be a balance of both right/left brain stimulation, and that it needs to progress as the brain starts to function better over time.

My goal is to do this one day at a time, not wasting time looking too far ahead and fearing the what if's.  If I keep reminding myself to think, and then actively think about things in my life, I have a better chance at keeping a healthy brain than if I just sit and stew about the what if's.

As an aside, I was interested in learning that both blueberries and apples are super good for a healthy brain.  I wonder if that's why I eat a blueberry muffin every day?  See?  I still have my sense of humor, so all is right with the world.

Cognitive Dissonance

It's coming up on 3 months since I came home from the doctor with a diagnosis of early-onset dementia. He assured me that there is treatment, including a prescription of Aricept, and urged me to "do things" that stimulate my brain to think, to work, to remember. I was taken aback, but not really surprised that there was "something wrong" as my good friends had pointed out to me that I was having memory issues for quite a while (as long as 2 years, according to one friend). I, however, heard the word "dementia" and freaked out, remembering my mother's years of decline into total Alzheimers by the time of her death. It was not pretty seeing her fumbling around in a mental fog for the majority of her final decade, and I could only think, "Dear God, what am I going to do?"

Well, the first thing I did was take Aricept, which triggered the manic phase from hell!  I was so filled with energy and enthusiasm that I started decluttering my house to the nth degree.   I was a maniac on a mission.  I ended up taking the RAV filled with boxes to Angel View a couple of times a day for days on end. When my daughter showed up on my doorstep, wondering what the hell was going on, she got into the spirit of the thing and helped me with the kitchen. I had 18 boxes labeled "dishes" and "kitchen" from when I moved into this house 19 years ago, but they had sat on shelves in the garage unopened, so I just gave them away.  I have no idea what was in the boxes, but I hope whatever it was was put to good use by someone else.

Part of what brought my daughter to the desert was my delighted news that I had decided to sell my house and move. In my manic phase (I am bipolar and on meds for that, which apparently reacted to the Aricept), I decided that now was as good a time as any to just pack up and move. The thought didn't go any farther than that, into such mundane questions as to why? where? when? how? I was flying off the rooftops and taking on the whole world. When the children intervened and asked some interesting questions, such as where? when? how? why?, I couldn't respond because that kind of practical information was unavailable. What finally brought me out of my mental state, however, was a very sobering thought: what about my dogs?  They are my family, and they go where I go, but I hadn't factored in housing issues, such as big yard, fences, and transporting them from  here to wherever.  I had signed a sales contract, but was able to cancel it (thank God for the cooling off period required by law), so I stopped that process before it got serious.  I was half-way finished with the possessions purge, so continued with that -- and got a very welcomed visit from my daughter, who had come to see first-hand what the hell was going on with mom.

As a final finish to the purge project, I hired a contractor to come in and refinish and then repaint all of my kitchen cabinets. With all the space remaining after getting rid of 20 years' worth of stuff and the kitchen brightening with the off-white finish, I am once again happy with being in my house. I do have a big yard and a separate dog run out back, so I don't have to worry about what my poor dogs would do if all I could find to live in was an apartment in a senior community.

My body has adjusted to the combination of my bi-polar meds and the Aricept, so I'm not longer flying to the moon and back every hour.  I also realized that I was donating to every charity that contacted me, and shopping online for neat things I neither wanted nor needed. Mindy did some quiet sleuthing while she was here and realized what was going on, so she had a very frank discussion with me and told me to stop writing checks to charity and stay off online shopping sites.  I will admit that I have ordered a few things recently, but I'm keeping track of what I've ordered and how much it costs so I don't get surprised with a $500 bill due at the end of the month.

The final piece to the new me is dealing with the diagnosis and realizing that I am going to have to be proactive as the weeks, months, years pile up to be sure that I'm staying as mentally sharp as is possible for me to be.  The doctor suggested playing memory games on the computer, and even though I'm not much of a gamer, I found one called Pyramid that I like. Numbers have always been an issue for me, and this game requires me to quickly add cards to total 13 to advance up the pyramid and clear the board.  At first, it was challenging as I couldn't remember what combinations of numbers equaled 13, but slowly but surely it has implanted in my brain and I don't have to think about it with every play.  I haven't lost the ability to express myself in writing, which is both a blessing and a positive outlet for excess energy.  There are things that I cannot remember, especially if it happened yesterday, or last week, or God forbid last month.  Sometimes Yucheng will remind me and then I can call up a memory, but not one replete with details. He's had to show me a dozen times how to get a picture off my phone and onto Facebook, but he's very good with repeating the instructions so I can do the process myself (hopefully; it's still a work in progress). When I can't remember something we said/did last weekend when he was home, he simply tells me about it so I can remember.  Yucheng and my dogs keep me active, and being active and involved in life is going to make a big difference in how I proceed through this new phase of my life.

I will be in regular contact with my primary physician, a man I respect to tell me the truth about the positives and the negatives associated with my diagnosis. I'm no longer in total disbelief or despair as time has allowed the reality to set in and become do-able. I'm going on Facebook every day, reading and responding to various posts and writing my own posts if there's anything of note worth putting out there. I continue to go about my own little routine in the house, but I make sure I get out and about once each day, even if it's just to go to the post office to pick up my mail.  I'm not making any major changes, but simply challenging myself to be present in each moment. Sometimes, I sit down with my dinner and ask myself what I did today and see how much I can recall.  It's going to be the old saw from days gone by:  One day at a time, dear Lord, one day at a time.  I can do this and I will do this and it's going to be okay.

Cognitive Misfires

I have been having trouble with my memory for about two years, little lapses that have increased in frequency and import.  One of my dearest friends had a chat with me as she has really noticed that I lose my place while engaging in conversation and often repeat what we've already discussed. I also have a tendency not to remember specifically how to do tasks, such as putting the choke chain on Sparkle the correct way so it doesn't hurt her.  I literally had to take a photo with my phone of the correct placement so I can use that to make sure I hook her up correctly. My friend made me promise to talk to my doctor when it was time for my next appointment, and to write down what needed to be said/covered, which I did.

Today was the dr. appt. with my favorite doctor. I told him that my friends had concerns that I'm starting to forget things, repeat things, claim no knowledge of ever having something as a part of my life.  He laughed and, after looking at my chart to check my birthdate, said that happens to a lot of people in my age range and has become part of the "new normal" as we age.  He double-checked medications to see if any of my prescriptions could be interfering with my cognition, and told me to stop taking the daily aspirin as that "may" have a cognitive link.  He also told me I no longer needed to take the milk thistle as my bloodwork  no longer has a link to a possible liver issue.  He did a couple of little tasks with me and was ready to bring me up to speed.

He strongly doubts that I have early dementia, but he's going to put me through a series of lab tests to see if anything is going on.  He says that "cognitive functioning" naturally diminishes as we age, and he's leaning toward that as a catch-all diagnosis.  He's going to prescribe Aracept as a precaution after he gets back the lab work I'll be doing tomorrow, lab work that includes a check for syphilis (really) because that can cause the symptoms of Alzheimer's.  We already have another appointment scheduled for 7 weeks from now to touch base again and he told me he's convinced I just have normal loss of cognition, and nothing serious or to be worried about.

I feel better for speaking up about the cognition issues and am especially relieved that he sees my lapses as typical loss of cognition, rather than early onset Alzheimer's Disease.  I'm not totally sure what the medical difference is, but one is a natural progression of aging while the other is a specific physical condition that can, and does, affect people and their quality of life.

I Hereby Resolve

Okay, so here’s the deal:  I’m fat and I don’t seem to be able to lose weight like I used to do with little effort.  I’ve tried eating only 3 times a day, and I’ve been careful what I eat (although I admit to a fondness for sweets at 10 o’clock each day with my mid-morning coffee), cutting back to about half of what I was eating.  I’m not a stress eater, nor am I a snacker of the salty-fat variety, but I have really bad food habits as I live alone and don’t like the effort involved in fixing a good (healthy) meal for myself three times a day.  I’ve tried protein shakes, healthy-eating diets, upped my exercise, and generally given it the old college try, but my belly is huge and my face is big and round where it used to be lean and narrow.

So, it’s time to do something again and, after thinking about it far too much, I decided to try something I’ve never tried before and see if something new and different works for me this time. I did some searching of the internet and ran across a Dr. “Rans” (phonetic spelling of his name as I don’t recall seeing it written anywhere). I listened to his lecture about “activating the AMPK gene and losing weight.” Didn’t sound any worse than other options I researched so I took a few notes and got this:

To lose weight, one must attack fat on a cellular level, particularly in deep belly fat situations. AMPK is the “master switch” of the body, so if one activates the AMPK gene, s/he can lose weight and live longer. Everyone has the number of fat cells they had from conception, so there’s no gaining/losing weight based on the amount of food one consumes, but on the number of calories and how they are stored.  Fat cells can expand and contract, and if cells are overfed, they lose function. AMPK is the “master switch” of the body, so if one activates the AMPK gene, one can lose weight and live longer.

All right, that’s a brief overview.  I listened for the full 45 minutes and the whole presentation made sense to me, so I decided I’m going to try this approach this year as what I’ve done in the past hasn’t seemed to help. According to this information, exercise improves health, reduces disease, and helps memory, but doesn’t help one lose weight.  I want to continue with my exercise routine, and may even up that a bit, but I also want to lose weight, and that happens on a cellular level. Hence the AMPK.

There are three keystones to this method, focusing on naturally occurring compounds that are available: berberine, which is the roots of plants and usually used as a diabetes treatment; gynostemona, an extract from plants that is an AMPK stimulator; and quercetin, which activates AMPK and reduces general sickness. This can’t be any worse than any of the other dozens of products and methods I’ve used to try to control my weight, so I’ll give it a go and see what happens.  I ordered enough for several months, and once I’ve put my money into something, I see it through.

My ultimate goal: not to stand on a scale and see that I’m down a pound or two, but to stand up tall and straight and be able to look down and see my shoes!  Surely that isn’t asking too much … .

Thunk!!

It wasn't until I heard and felt my head smack hard and loud against something that I "woke up" and realized I was on the floor between my bed and the dresser. Y heard my head hit too, from the next room with the door shut in the middle of the night. Y came running, asking me what had happened, for which I had no answer as I still couldn't process that I was not in my bed, sleeping.

My leg felt like I had broken it, but I had no idea how that could have happened, but judging from the bruise and swelling I still have, I hit the dresser--hard--with my right leg. As Y helped me up so I was sitting on my bed, I was still befuddled, but realized that I had somehow left my bed and fallen down. I remember pulling the sheet up over me, or that's what I think I remember, but as to being out of bed and walking, the only reason I can find is that I was sleep-walking, which is not something I know I have ever done in my past. Sure, I wake up at least once a night and go potty, but I had not gone potty this night and I was not awake.

The injuries turned out to be minor, the hit to my head bruising my scalp and the hit to my leg leaving two nasty bruises (called "bone" bruises) and swelling. I went to urgent care just in case, but I guess falling is simply part of the aging process and we just have to be happy when it's "nothing," rather than something that takes us down another road we don't want to travel.

Now, what's interesting is that I met my two friends for lunch/movie this week and told them about my fall and how scary it is not to know what happened. Believe it or not, both of them had also taken a fall in the past few days, one slipping on some loose gravel and the other getting caught up in a chair she was trying to exit. We all 3 were a bit bruised, but nothing serious, leaving us shaking our heads at this darned aging process we are all sharing.

We're all three thankful that there was "nothing" to our injuries and that we will all be healing from the minor wounds we received. I'm also really thankful for Y, as he got me settled until it was morning and then drove me to the urgent care just in case. The doctor there told me I had a hard head that was now decorated in a nice big bruise, and that my leg wound would respond well to icing, elevation and some Aleve.

Another catastrophe averted.

A Pain in My Side

I have a sharp pain in my lower left abdomen. Since it began after I had a colonoscopy, I asked the dr who did that procedure what it could be. He said a pulled abdominal muscle and sent me on my way. The pain increased in occurrence and intensity and led me to make an appointment with my primary care physician.

Of course, I never see the actual doctor, but the PA said it could be female issues and sent me for a CAT scan. That came back with a list of “nots,” but no idea what it is. Then the pain really got intense and sharp, like a hot knife being inserted into my left abdomen, twisted, and then removed. This time, I went to urgent care.

The staff doctor at urgent care told me it could be female issues, which I told him had been checked and ruled out, but a quick urine test revealed a UTI, which now became the ah-ha! that’s what it is moment. I got two prescriptions: one for the UTI and one for the pain. The symptoms lessened in frequency, but not intensity, and then ratcheted up upon completion of the prescriptions.

So, back to the primary care doctor for a what next? Well, said the PA, it could be hip pain, so let’s go have x-rays taken of your hips. Perhaps a bit more than somewhat skeptical, off I went to the imaging center. The results came back this week and I have acute issues with both of my hips, according to this study, and need a steroid shot and, perhaps, hip surgery in the near future.

I’m still skeptical that the acute hip issues are causing the abdominal pain, but at this point in time I’ve got one foot nailed to the floor and am going around in circles. I don’t seem to communicate that the pain is in my left abdomen and, according to a data search on the web, could easily be one of at least 10 different issues presented in a nice, tidy list. Now I’ll agree that this list does include female issues, which is one of the could-be’s we’ve already included in possibilities, but nowhere on the list is the left hip causing intense issues with the lower left abdomen.

I’m getting a steroid shot tomorrow and will hope that either confirms or rules out the left hip as I’m a bit worried, after reading the list of 10 issues that could cause intense pain in the lower left abdomen, that this could be “something” I really don’t want to have causing the pain.

UPDATING: I had the steroid shot and it didn't feel any different for that day; however, the next day I noticed that the pain was lessening in intensity, but still present. The next day, both the duration of the pain and the intensity came under control. Today? No pain! Guess the doctor who said the pain was caused by the acute arthritis in my left hip is correct.

BPPV*

Vertigo is not fun. The old expression “my head is spinning” may indicate excitement about something unexpected, but, in my case, it simply means vertigo, a whirling and swirling motion accompanied by a “darkness” that can last several seconds or much longer. It’s somewhat terrifying when it happens, especially when one is in the stroke decades and anything that seems like an impending stroke can cause panic. I’ve been handling it for about the past 6 months, not driving more than necessary because I didn’t feel safe to be behind the wheel.

Today was doctor at the ear institute day. I listed my symptoms, she did some quick checking, and I was rotating on a table, going in and out of vertigo at her command. End result is BPPV; translation is calcium carbonate crystals in the inner ear that move out of place and into a swirled canal where they cause vertigo. By doing some weird movements and keeping my head completely still, the crystals settled down and the diagnosis was confirmed.

Treatment was 10 minutes of movement and the installation of a neck brace. My goal is to keep my head “neutral” for the next week, no looking down at my feet or throwing my head back for a shampoo, no quick movements to either the left or the right. By next week, the crystals should have implanted themselves back where they belong and my symptoms should be gone. I must keep the neck brace on even when I sleep, and I’m supposed to sleep sitting up as best I can.

We’ll see if it works!

*Benign Paroxysmal Positional Vertigo

Four Eyes

I was five years of age when I had my first pair of glasses fitted to my face. They felt strange, an extra weight on my face that formed a plastic mask over my eyes. Now, decades later, I am going without glasses – and that, too, feels strange.

The first thing I do in the morning is reach for my glasses; the last thing I do each night is put my glasses on the bedside table. Other than that, I never think about wearing glasses because that is my normal. Since the surgery this past week, I’ve been not wearing glasses unless I have to read something, and it feels weird to be a two-eyed person, rather than a four-eyes. I miss the feel of the glasses on my face and feel strangely naked, exposed, and vulnerable.

In two weeks, the surgery will be performed on my left eye; after that, I may need glasses to read, but will be glasses free for the majority of my daily life. I already am getting a taste of how strange that feels, but I hope that this between time will make the transition smoother than if I just went glasses free all at once.

The surgery is to remove cataracts, with the side benefit the correction of acute astigmatism. Part of me wishes I could have had the astigmatism corrected surgically when I was a child as I’ve always resented that I had to wear glasses all the time, while other people never had to wear them.

I wonder if/when the lens replacement surgery can be done on children so they, too, can take the 24/7/365 frames off their faces. My doctor says that my vision will be exceptionally clear (no cataracts) and also more precise once my eyes adjust to the lens replacement. Isn't that a wonderful gift to give to a child who has his/her life ahead?

I See ...

The months of increasingly blurry vision that I attributed to the addition of prisms into my lenses after the last eye exam over a year ago is actually the symptom of cataracts. I’ve organically taken some corrective actions in an effort to “fix” my blurry vision, constantly adjusting the glasses' fit to my face, which only helps as long as the frames stay in place, purchasing extra bright Ott lights to help me see, and using a magnifying glass for close-up work and small print. All of these actions helped me cope with the frustration of not being able to see clearly; however, the bottom line is that I’ll need surgery when the cataracts are the right size for it, which will be in about 9 months.

What’s interesting is that the development of new replacement lenses may correct my vision issues and, after wearing glasses since I was age 5, there is a distinct possibility that I could be freed from corrective lenses altogether! Those who develop the vision correction inserts for the cataract surgery have been quite successful with a special lens for patients with acute astigmatism, which is one of my issues; thus, with the transplant lenses in place, no more astigmatism. My eye doctor said that I may need OTC reading glasses after the surgery, but perhaps not for several years after it—if at all.

So, cataracts become a blessing in disguise. Of course, having spent the majority of my life with glasses as part of my facial recognition process, it will be challenging to see my face naked, but I’m willing to go there, especially since my blurry vision will also be a thing of the past, rather than an increasingly irritating part of my present and future.

P-New-Moan-Ya

Nothing like flying a coupla thousand miles to spend 10 vaca days sick. I thought the worst of the cold I’d hosted for the previous 10 days was over, so climbed aboard the planes and took off for T’giving. Man plans; God laughs. Evidently, somewhere along the line I introduced either bacteria or virus into my already compromised immune system and my cold became community acquired pneumonia, which seems to be pretty common in older folks especially.

Rather than touristing hither and yon, I’ve sat on a couch, feeling awful and then much worse, and watched the Hallmark Movie Channel. My dotter admits that should have been a clue, but we missed it. Sunday, I felt like death warmed over, so dotter convinced me to go to a walk-in clinic at WalMart, citing my ashen hue as an unflattering complexion color. One look by the receptionist led to the nurse on duty coming out; she said I needed the next level up and sent me to urgent care.

They were both nice and efficient, traits not often seen in CA clinics. The doc came in, assessed the situation, diagnosed the CAP, prescribed several lines of defense against it, told me it’s okay to fly back home BUT, if I am not over it by Friday, directed me to return to an urgent care for chest x-rays and blood work.

Do I feel better? Yes. Do I feel ready to return home? No. I’m tired, really, really tired – and still am plagued with “cold” symptoms that aren’t a cold. I’ll make it home and I’ll make it to work Wednesday, then I’ll sleep until I go to work Thursday. Friday, if I’m not at least 90%, I’ll go to urgent care to find out why and go from there to well again.

Anal Retentive

I will take three colonoscopies for every one personal collection experience. Because I was not up for more medical appointments last year, I skipped them; feeling guilty, I scheduled everything imaginable for this year, perhaps in a desperate need to make up for not having the “annual” inspections last year. Thus, I kicked off medical month with lab work today: blood glucose, cholesterol, thyroid, and fecal matter inspection. Yeah, that one. I’ve been doing the colonoscopy every 5 years, so didn’t think I had to participate in the self exam process, but figured if the doctor thinks it should be checked, I’d find a way to cooperate – regardless of how much I really, really did NOT want to do this.

For anyone who is not familiar with the experience, one must first have the urge to purge, then be willing to hold that thought whilst one sets up for the collection process that begins with floating a piece of waxed paper on top of the water in the bowl. The goal is to unburden one’s self on top of the floating paper without sinking it because coming into contact with the bowl water negates the validity of the test. It’s challenging to hover over the plastic paper and wonder if it will stay afloat long enough to collect a sample before sinking, which, of course, depends upon the gross weight of the deposit.

Some people are rodents and eject small pellets, while others collect the deposit for a couple of days and make BIG Great Dane doo-doo. Once it starts, there is no stopping to assure that the weight of the excrement does not sink the paper; because there’s only one paper provided in the collection kit, if the paper sinks, there is no Plan B provided. I’m one who never knows how large the deposit will be until I’m fully engaged in the process, so not knowing whether my paper was up to the challenge of supporting my endeavor was inhibiting. However, once the bowels move, it’s too late to back out, as it were, so the tricky part is to hoist one’s self above the bowl and take the sample with an incredibly small sample stick before the paper sinks and the experience becomes truly wasted effort.

After reading the directions three times, and preparing the collection kit in the proper sequence on the bathroom vanity, I felt I was ready to do this. OMG! I doubt that anyone will ever truly be “ready” to do this, and it really is a lot more challenging than the pictorial directions present it!! The paper sinks much faster than the person can rise, grab the collection stick, swab the excrement, and then put it into the very, very small opening in the very small collection container, snap the lid securely shut, and then resume one’s seat on the throne to finish the business at hand. If my paper had sunk and taken my sample with it, there would be no repeat performance because I’d just figure that was God laughing at me – and anyone else foolish enough to do one of these sample collections.

We old folks are the target demographic, and there are going to be far more old folks than young ones in the coming decade, so if the labs really need these specific samples, someone better come up with a more user-friendly process. If anyone wants to make life easier for all concerned, I suggest revamping the collection kit!! My eyesight is on the edge of acuity, my manual dexterity is limited, and my physical ability to rise up, do the job, and then resume my seat is challenging. I’m going to guess that I may be able to do this process once more, next year, and I’m not going to assure anyone that I can successfully complete the collection two years in a row, but I am sure I won’t want to even make the attempt.

Disability Diversion

During my time on the couch, I've been trying to use up some of the yarn stash that has been accumulating during the past decade. Some women buy shoes, but I either buy cars or yarn, especially when either is on sale. I ordered the yarn by color into individual boxes that make quite a stack in the guest room closet. Slowly, but surely, the boxes are emptying, and I've been much, much better about not making new purchases because I finally realized that I will never live long enough to use up what's already here, much less additional yarn.

After far too many scarves, hats, and fingerless gloves have been made and given away, I decided to make a unique afghan for each of my youngest brother's children -- all 5 of them. When my brother turned 50, I presented him with the first of the left-over project, a huge, huge granny square afghan that weighed a ton, but did actually fit his king-sized bed. After it was finished, I liked it, but I have often wondered how the heck to toss it in the washing machine, as I do with all my other creations. Daisy's blankie goes in once a week, Mia's sometimes twice a week, and the shared afghan on the couch chaise is changed with the seasons. I mix them with smaller items so the tub won't go wonky, which works well.

Anyhoo, I made one granny square afghan in colorful mixed squares bordered in black, then another granny square afghan bordered in white, and then a knit concoction also bordered in white, and now am half-way through a crocheted striped blanket alternating white, yellow and blue bands with some fuzzy yarn thrown in for texture. The final afghan is going to be for the only son, khaki background with 3 squares traveling up the body: one red, one white, and one blue for his tenure at the CA Maritime Academy.

I may call it quits when I finish this disability diversion and find somewhere to donate what's left in the boxes. While I've enjoyed keeping busy, and I like to create original designs for the person I have in mind for the finished project, I'm tired of being on the couch. My knees and my back are not going to get better because I did not receive either adequate or appropriate care at the time I needed it. I cannot change the past, but I am going to have to live with the after-effects of it, so that's what I'm going to do. And I'm not going to do it on the couch!

I'm not going to continue to create projects to take my mind off how pissed off I am at being treated badly by the medical profession. It's time for all of this to get behind me, and the best way for that to happen is for ME to move on and not take the boxes of yarn with me!!

Balls

Seems that the newer way to rebalance one's back, stabilize one's core, and trick one into thinking it's not physical therapy, but FUN, is to have patients contort on a fairly big ball. Rolling back and forth is one of the more challenging exercises, oops, I meant to say "activites," one can do with a ball, as the FUN begins with one simply learning how to sit on the darned thing and not fall off.

I need to continue to stretch all those internal pieces that have drawn up (the reason why the back of my knees no longer go flat against an exam tabletop), as well as tighten the tummy muscles (in my case, tummy is too cute a word for the bulging abdomen I'm sporting). Walking is good on flat surfaces, such as a sidewalk (please write and tell the local gov't that sidewalks are good, as well as fun), but riding a bike is not recommended at this time. I skipped over the pool part (see comment re: tummy), but I do know that soaking in a really hot tub until the water cools feels heavenly (contingent upon one being able to extricate one's self from said tub).

Rather than jetting off to Greece to have mad, passionate sex with an inappropriately young man (tricky with a back that is basically frozen in place, but where there's a will, there must be a way), I'm going to be meeting more medical personnel up close and personal for a bit. With 3 separate doctors tinkering with this 'n that, it's a wonder I am not bedridden. I have to work with the system and see if together we can figure out (1) what's actually wrong and (2) determine what we are going to do about it, then (3) actually do it!!

Other than the ball. I see an ER in my future, accompanied by a chorus of "I fought the ball and the ball won."

Moving On

For the past week, I’ve been so totally pissed off that I have been ranting and raving much more than is usual for me. The reason: another call to reschedule yet another medical appointment. It’s taken me a week to figure out why that pisses me off so fast and so thoroughly, but I have realized it's a lack of respect for me as a patient. I am as important as any other patient – so why do I get the call to reschedule? When I make an appointment with a doctor for several weeks in the future, I expect that if the doctor with whom I am scheduled cannot take the appointment, a colleague should see me during the scheduled appointment. A medical issue resulting from a serious fall needs to be addressed appropriately and in a timely manner, not put on hold because the doctor's plans change.

My back issues have gone untreated since the trip to the ER last December 17, although I have talked to 3 separate doctors, as well as office staff, and filled in pages and pages of medical background in my feeble attempt to be heard. The ER doctor assured me the correct diagnosis was “stirred up arthritis,” based on the x-rays done at the time. My own well-known knee surgeon responded with a smile when both my daughter and I stressed prior to the knee surgery that there was something seriously wrong with my back. My doctor continued to focus on the knee during the follow-up appointment to remove the stitches and again after completion of physical therapy, although I told him that I was now almost 2 months past the injury and still trying to cope with the on-going loss of physical function.

He finally agreed to refer me to a back specialist whom he highly recommended, a process that took another week to complete. An appointment was made with the recommended specialist, but a week later came the call that “my” doctor would not be available to keep the appointment and I had to reschedule. In the interest of being seen sooner than later, I rescheduled the appointment with another doctor in the practice, but when I arrived as directed for the appointment with my 18-page medical history and the x-rays from the ER visit, he told me that he could not ascertain an injury based on the ER x-rays. He did, however, suggest that I could benefit from exercise activities performed in a swimming pool. The stunned look on my face must have been his clue to then decide that, perhaps, it could benefit both of us to take another look; hence, the appointments for a CT scan and 2 separate MRIs, the results of which are several pages in length and detail numerous actual physical injuries/ issues.

And here I sit, again waiting for the medical services for which I pay each and every month. My follow-up appointment with the substitute doctor had to be rescheduled because he takes an annual family vacation at this time of the year, but I guess no one recalled that when they scheduled the appointment? Then, last week, with the appointment scheduled for today, the call came again: the doctor is not available this week, so my appointment is again being rescheduled. I made it clear that this is not an acceptable way to conduct one’s business and asked to be scheduled with the doctor to whom I was originally referred. Of course, that is not an option. Before I said anything I could regret, I ended the call.

I called my knee doctor and asked for another referral to another doctor. My injury may not be significant to them, but it has greatly impacted my life and I want to know how to move past this place that I have been since Thanksgiving 2009. The nurse with whom I spoke last Thursday acknowledged my request and assured me that the doctor would respond by Monday at the latest.

It’s Wednesday; I’m still waiting.

I’m sure my back has healed because the body heals itself, but the point is the disrespect shown to me as a patient who, in good faith, put my medical well-being into the doctors’ hands. I should not have to sit and wait 4 months for my body to heal itself, especially when I proactively made a 75-mile round-trip to the ER at the time of my fall and then persisted to question the casual assumption that it’s my arthritis; nothing more, nothing less. I’ve already done this with the knee injury that took 4 months and 4 individual trips to 4 different doctors, complete with a set of bone x-rays that showed no injury, but was finally recognized in an MRI report. Ironically, the knee surgeon assumed it was “nothing more than a torn meniscus,” and performed surgery based upon that assumption, rather than actually reading the MRI report I brought with me to the appointment. The torn ACL and the fractured kneecap detailed in the MRI report did heal without medical assistance, but there is not one minute of one day that I’m not in pain in my knee, and, since the December fall, also my back.

Family and friends often chide me for refusing to go to the doctor when I have medical issues, but there is a lifetime of reasons why I make that my last option, rather than my first choice. I do want to be told there is nothing wrong, nothing to worry about – if that is the actual case, but my experience is being blown off with the “nothing wrong” diagnosis when there is something seriously wrong. I depend on the medical professionals to diagnose the medical issue and then offer a treatment plan, but it seems as if I can do as well by consulting mayoclinic.com and installing a heated pool in my backyard!
_______________
Okay. I'm finished. I cannot stay in this place physically or mentally. I probably will not go back to a doctor because the stress of my expectations that someone will actually do something to change what is exacerbates my anxiety and causes chest pains. I've been eating chocolate like it's the only food group available to me, while trying to cope with a situation that is obviously out of my control. If I cannot change it, I have to accept it, and if I have to accept it, I must do so or suffer from the consequences of trying to change what I simply cannot change. My asthma has flared, as well as my diabetes, and it's not worth the personal price I'm paying to want someone to hear me and help me. As I've always believed, "if it is to be, it is up to me."

Moving on.

Medical Transcription

It is impossible to translate a doctor's report into understandable English! I have 3 completed reports on the state of my back/pelvis/hip regions, with another report due to me perhaps by Friday. What they basically state is that I fell in December 2010 and that fall resulted "in an acute/subacute traumatic L4 end plate injury," but I've been Binging and Googling my fingers to the bone and cannot actually determine what that is.

There are lots of medical terms included in the reports, including lumbarization, hemangioma, retrolisthesis, osteophytic ridging and encroachment, and Schmorl's node, all of which somehow relate to my superior L4 endplate, but ... that's like finding all the edge pieces to a puzzle and then being left to my own devices to figure out what the actual picture is without a picture of the finished puzzle.

What I do not understand is why more emphatic methods were not used to determine the extent of the back injury either at the time of the fall or immediately thereafter. I questioned the ER diagnosis of "stirred up arthritis" at the time and asked for an MRI, and again at my knee surgery, and again at the stitch removal 10 days later, and again when I returned to beg for some kind of help with the extreme pain and loss of function in my back/hip area at the completion of 6 weeks' of prescribed physical therapy for my knee that actually resulted more in trying to get me on my feet due to the back issues.

I suspect that medical care is based solely on persistance because only after numerous failed attempts to have a better diagnosis was I sent for tests to determine what happened as a result of the fall. It appears to me that it's more than just "stirred up arthritis," based on the statement "acute/subacute traumatic end plate injury," but shouldn't I have known that months ago, rather than well after the fact? Ignorance is not bliss: it is stupidity that allows the injury to be exacerbated simply by going on as if nothing is wrong. My stupidity this time came to an end the day I walked the dogs and found that I could not walk back to my home! Thankfully, a friend who lives nearby was able to come get me, but that situation should not have occurred.

Next step: return to the spinal specialist to determine what these reports actually say and what I can do to get beyond this place in my physical life.

Doc Update

What's another potential surgery to fix the mess left by the last surgeon? The untreated ACL injury has scarred over, but that does not mean it's fixed by any means. I head into PT for at least 2 months to see if I can rebuild the atrophy in my right leg from limping around for a year. If the muscles can respond and strengthen, I may be able to avoid an ACL surgery, but the damage has been done, so I have to tuck that prospect into the back of my mind, along with the hip replacement and, perhaps, a surgery to deal with the lumbar disc that is ... gone is perhaps the best word to describe the situation.

The body is a marvelous machine that keeps running well beyond what we not only subject ourselves to, but force ourselves to do just to make it through each day. When it seemed impossible to stand on my feet and take even one step, I made it through the day, doing whatever had to be done however I could accomplish it. I've been able to keep on keeping on, but in the process, my body has paid a punishing price. There is no going back, and the road ahead is going to be tough, too, but it's time to stand up again and get moving forward.

A body in motion has a better chance of staying in motion than a body that sits down and refuses to stand. Off the couch and keep moving. The dogs have been patient, but they want to go for their daily walk!!

AAAHHH: The Joys of Pain Meds

Yessiree: I'm home, surgery #1 in the past. My knee is just fine, but I'd never know if there is pain because I have not just serious "during the surgery" pain meds, but my own little bottle of pills. Believe it or not, my back hurts a whole lot worse than the surgery site, and if it hurts through the pain meds, it needs attention!!

My dotter will call the current surgeon today to find out what he encountered with the knee yesterday, including the untreated fractures and the untreated ACL injury. The best case scenario, the one for which I am rooting, is that both of those injuries totally healed on their own and I won't need any further intervention with the right knee.

Step 2 is the follow up to the trip to the ER to see what's really going on with my hip and back pelvic area/spinal column. It's a pretty good bet that there is another surgery in my near future because the on-call at the ER thought my surgery was to replace my hip. When I told him it was to fix my right knee, he smiled and assured me that hip surgery is in my soon future. Great.


That accomplished, we can move on to the other side effects of poor medical care.