I'm Back . . . Finally!

The Hospital Bed
By:  Nathan and Jenny
http://www.flickr.com/photos/nathan_and_jenny/4295768760/

It’s been a year since I’ve done a blog post, a year filled with concern over some crazy health issues that came out of nowhere.  It all started around last Christmas, when I began having mild migraine headaches, along with a scary variety of migraine auras (actually called “ocular migraines” – who knew?).  These headaches, although not severe, were with me literally 24/7.  And that frequency lasted until March.  I was convinced I had a brain tumor.

By the end of March, I’d had an MRI that showed there was no brain tumor.  But there were other “issues” that needed to be investigated.  So began my yearlong odyssey of doctor, hospital and lab visits, which I will condense into a few paragraphs.  The first neurologist I saw put me on a treatment regimen that actually increased the frequency of my headaches.  So I switched to a team of doctors who sent me for tests.  Then they told me to see a hematologist, who ordered more tests, which identified a genetic mutation that has nothing to do with the headaches.  As of today, they’re pretty much gone, but I still get the auras daily, every time I’m exposed to bright light.  And nobody knows why the headaches began or why they’ve stopped.  It turns out that neurology is still in its infancy, because relatively little is known about the brain.

Adding to my health concerns, in October, I experienced the worst upper abdominal pain of my life.  I couldn’t sleep at all that night and almost went to the ER.  Instead, I saw my doctor first thing in the morning.  He asked if it could be food poisoning and if I’d been to a restaurant.  I told him I hadn’t, that I’d made a vegetarian stir-fry the previous evening, so it couldn’t have been food poisoning.   Well, because of the extreme pain and the abdominal swelling, he sent me to the ER, where I had several tests.  They found nothing that would account for the pain, but said I had a very high white count.  So I got an IV bag of antibiotics.  One of the tests did find a 6mm kidney stone, which was a shock.  And, although the stone wasn’t causing any immediate problems, I saw a urologist about it.  I’ll see him again in a few months to further assess the situation.  By the way, here’s a quick tip – the urologist said to drink Crystal Light lemonade if you have kidney stones, because the citric acid sometimes helps break them down.  (At least, I think that’s how he said it.)

So why all the terrible stomach pain?  Well, within three days, I was back to a normal diet and feeling absolutely no pain.  So I decided to have some of that veggie stir-fry before it started to go bad.  And within three hours of eating that damned thing, I was doubled over again.  Yes, I had poisoned myself twice on the same crap!  Because I added cauliflower, broccoli and snow peas after the other stuff was cooked, they never got hot enough to kill any bacteria.  And, although they say washing veggies with water is enough, I’m proof that’s not always the case.  I figure I must have needed another big doctor/hospital bill.

Anyway, after a year of anxious doctoring, I’m left wondering whether my gene cesspool will cause health problems in the future.  (Fortunately, it hasn’t made any trouble yet, and the doctors and I are hoping it never will.)  And I wish I knew what will happen with the kidney stone.  Will it suddenly start moving on Christmas Day, when I have 30+ people here?

Probably the first thing I ought to do is stop thinking about all of it and force myself to resume eating fresh vegetables without first soaking them in bleach.  But, for now, I think I’ll go mix up a batch of Crystal Light.

I'm Back . . . Finally!

Update on Wen by Chaz Dean Hair Loss

Well, my last post was about how I’ve been losing hair since using Wen by Chaz Dean Sweet Almond Mint Cleansing Conditioner, even though I stopped using the stuff before the 24th of June. If anybody’s interested in seeing complaints from others who’ve lost hair after using Wen products, here are some links:

http://wen-haircare.pissedconsumer.com/wen-shampoo-made-my-hair-fall-out-20110122217733.html

http://wen-haircare.pissedconsumer.com/wen-cleansing-conditioner-causing-hair-loss-20101228213461.html

http://www.wenshampoo.org/wen-and-hair-loss.html

The last one listed is a blog on Wen's site that makes light of the problem. I left a comment about my hair loss, along with the FDA's phone number, and, of course, it wasn't published.

So what am I doing about this? A lot. I contacted the FDA (cosmetic area), as mentioned in my last post, at 888-723-3366 and filed a complaint. The person I spoke with seemed very interested and concerned about the issue. In fact, she also told me that anyone who’s had a problem with Wen products should save the bottles, because the FDA wants the expiration date and the lot number, if you file a complaint.

My bottle of cleansing conditioner had no expiration date on it, and the lot number is almost invisible. You’ll find it on the bottom of the dark brown-colored bottle. It’s NOT the tiny number on the bottom of the label. I had to use a magnifying glass, after a Wen employee told me where to look for it. It appears to be in black ink, and it’s very faint. At first, I told the woman that there was no number there. Why on earth would they make it so difficult to find the lot number? But trust me – it’s there. My lot number is T1088A.

I also wrote a letter to QVC, which sells Wen by Chaz Dean hair products, even though I didn’t buy the stuff from them. I explained what happened to me and told them that I’m working with the FDA. And I ended the letter by saying:

“At this point, I’m working with the FDA, hoping it will eventually require warning labels on Wen products. And I would think it advisable for you to require warnings, as well, since it’s inconceivable that you would knowingly expose even a small percentage of your customers to unexpected hair loss.”

In response to that letter, I got a call from QVC’s Office of the President, asking if they could forward the letter to their buyers and a vice president. The woman who called had me on the phone for at least 15 minutes and said they would be looking into my claims. I also gave them the websites above.

Finally, I visited my dermatologist, who said that she’d never heard of some of the ingredients listed on the bottle. So she can’t speculate on which one caused the hair loss. She told me to start taking Biotin and to come back in two months to see if the hair loss has stopped.

I still can’t believe that Wen doesn’t warn people that some percentage, however small, of its customers will lose their hair. All I want at this point is for Wen to put a warning about hair loss on its label. It would also be nice if they’d identify the ingredient that they suspect is causing the problem. But to do that would be an admission that they’ve ignored their customers’ best interests in favor of profits. If my hair continues to fall out, you can bet I’ll be talking with Wen again.

Photo by: Sandy Laurence©

Update on Wen by Chaz Dean Hair Loss

Communicating with Dementia Patients

I wrote this article for Type-A Parent (http://typeaparent.com/) and thought it was important enough to repeat on my blog. As the population ages, dementia is becoming a huge problem. And the woman in the article has found a way to communicate with dementia patients, even after they stop speaking.

Here’s a link to the article:

http://www.parade.com/health/2010/11/21-unlocking-the-silent-prison.html

It’s frustrating for grandchildren of any age to witness a beloved grandmother going downhill because of dementia. Unfortunately, lots of young people don’t visit their grandmothers because they’re uncomfortable with the disease. They often don’t know whether to attempt a conversation, or what to say when they do. It’s especially difficult for the young, because they usually haven’t had much exposure to dementia.

Well, Michelle S. Bourgeois, a speech-pathology professor at Ohio State, has come up with a method of making those conversations go a little more smoothly. According to an article in the November 21, 2010, issue of Parade Magazine, Bourgeois discovered that Alzheimer’s disease first strikes the part of the brain that controls learning and memory processes. But, because reading is a skill that becomes automatic, after doing it all our lives, patients are often still able to understand simple printed explanations.

For example, while volunteering for hospice, I had a patient who would ask about every five minutes when her daughter would return home. Bourgeois suggests using flash cards with simple messages printed on them. So I could have printed “Your daughter will be home at 6:00” in large letters. And in many cases, patients understand the message and stop asking so often. If they do repeat the question, simply tell them that the answer is on the card.

Reading can help even in cases of anger and anxiety in people with dementia. Bourgeois tells of a situation where the patient refused to shower. So her aide made a card that read, “Showers make me feel fresh and clean” and gave it to the patient when it was time to shower. It actually worked. Bourgeois said, “Even when dementia is so advanced that people cannot speak, they can read if the words are large enough.” She goes on to say that spoken words aren’t stored in memory, so they’re ineffective.

In another situation, Bourgeois tells of a patient who told her daughter, “You’re not my Susan.” So the daughter gave her mother two photos, with notes written under them. One said, “This is my daughter Susan at age three.” And the other note said, “This is my daughter Susan now.” When the patient looked at the two photos and notes, she replied, “As beautiful as ever.”

I am really excited about this and will definitely try it with my next dementia patient. I’ll also share the Parade article with my patients’ caregivers and the hospice organization for which I volunteer. (In the meantime, if any caregivers out there try this with a dementia patient, I’d love to know if it was successful.)
But I’m writing about it here, because it would be tragic for grandchildren to stop visiting grandmothers afflicted with dementia. Bourgeois says that people tend to treat these patients as if they’re not the persons they were, “But they’re still here.”

http://typeaparent.com/spending-time-with-grandmothers-who-have-dementia.html

Photo by: Charlmers Butterfield©
http://en.wikipedia.org/wiki/User:Sba2
Title: Elderly Woman

Communicating with Dementia Patients

Post-Op Days

After Friday’s surgery, my husband is finally feeling human again. When we got home from the hospital on Friday, he was enjoying the effects (or lack) of a nerve block. Not only was there an absence of pain – he couldn’t even move his fingers. But it was blissful . . . until about 4:00 Saturday morning. That’s when the nerve block began wearing off. Within four hours, he was going crazy with pain.

The hospital discharge instructions said to call the doctor if that happened, and the doctor on call told us to go to the ER. Well, they gave him an IV of some really powerful stuff and added Advil to his pain medication regimen. The two hours we spent there worked wonders on his pain. It turns out that the catheter delivering pain meds to the nerve surrounding the repair site might have been inserted too deeply, rendering it useless. But now his pain is at about a 2 on a scale of 1 to 10. That’s definitely an acceptable improvement.

A home health nurse visited on Sunday (yes, Sunday!) to pull out the nerve block catheter and change the bandages. Then today, a physical therapist came to get him started on the exercise chair that was delivered to the house last week. She also showed him how to eventually sleep in the bed again, instead of his recliner. I about croaked when they came into the bedroom (bed unmade, unfolded clean laundry in a basket and makeup paraphernalia all over my half of the bathroom counter). The cute young thing actually climbed into bed with him to show him how to best support his shoulder while sleeping. Well, that not only made his day – it probably made the whole ordeal worthwhile!

Post-Op Days

Surgery

Well, my husband had his rotator cuff surgery this morning. We had to be there at – get this – 5:30 a.m. I thought I was going to die, having to get up at 4:30, after being unable to fall asleep ‘til 3:15. (Hell, I’m used to going to bed between 3:00 and 6:00 a.m., so there was no way I could fall asleep around 11:00, as planned.)

First thing to hit me – the woman in charge of the surgical waiting area was a bitch. She was condescending and sarcastic with most of the people there. I was itching to deck her. But, of course, I’m non-violent (except in my dreams). Second thing was that everyone else we encountered was great – pleasant, helpful, compassionate, the works. The only problem was that they had to hurt my husband, and I am such a baby about that stuff.

When my son got his baby shots, I had to leave the room, because I’d start crying when he did. Same thing when my brother, at 18, gave our mother a kidney. When I heard him scream as he tried to move after the surgery, I bawled like a baby in the hallway. (Of course, that was partly because I thought I should’ve been the donor, instead of him. Being the oldest of nine kids, I was very protective of the younger ones.)

Anyway, I heard the anesthesiologist tell my husband, “Now this is going to burn – a lot.” And “Now you’re going to feel a lot of pressure.” “I’m sorry.” “I’m so sorry.” It killed me. He was pretty drugged up already, but he was groaning a bit as she fed a catheter into his neck, so that he could go home with a local anesthesia drip to take the edge off the pain. And, of course, he got the good stuff in pill form.

Now we’re waiting for the nerve block to wear off and the real pain to begin. He’s got a pill and water by the recliner, where he has to sleep. And if he needs help with anything after I fall asleep (can’t believe I haven’t yet, with only one hour last night), he can call the house phone with his cell and wake me. I really hope he doesn’t suffer like so many people have said he will. Keeping my fingers crossed!

Surgery