Sometimes the Tide Brings You a Sail

While I’m off the grid for a while, I thought I would refresh some of my previous posts. Hope you enjoy this one.

~~~~~~~~~~~~~~~~~~~~~~~~~~

I enjoy the movie Castaway where Tom Hanks plays a FedEx executive that gets washed ashore a deserted island after a plane crash. After he is rescued and brought back to the U.S., he talks about the desolation and despair. But one day while he was stranded the tide washed up part of a Port-a-Potty, which he subsequently repurposed as a sail to his makeshift raft. He said that you have to hang on because you never know when the tide will bring you a sail.

I’m struck by a couple of things. First of all, life is what you make of it. I’d never have envisioned a plastic potty house as a life-saving tool, but it just goes to show, it’s all in your perspective.

Secondly, that Tom Hanks’ character was right. You never know what will be coming next that will completely turn the situation around.

My day started as a Porta Potty day — not the door, the contents.

But before long, some people stepped up to the plate to deal with some issues and my husband sent me a beautiful bouquet of red roses and stargazer lilies. And while I’m still in the cesspool, I’ve got some people starting to paddle.

My thoughts in general have been going down that path. The fatigue and increased Sjogrens have really bothered me and, coupled with some mounting issues at the office, I wonder why I don’t quit this rat race and stay home and take better care of my health. But then things tend to get worked through and it’s a week later and I’m still here cashing that paycheck.

I think with RA in general, you have to hang in there. There is so much research going on and new discoveries every day that you have no idea when that piece of porta potty you’ve been dealt will be transformed into a sail.

Here’s hoping you’ve got clear sailing ahead. Thanks for checking in.

Advertisements

Crickets Without Legs

While I am offline for a while, I thought I’d refresh some of my favorite posts. I originally published this one in 2010 but unfortunately, some things don’t seem to change. Enjoy!

~~~~~~~~~~~~~~

It seems that recently I keep running into situations where people, that even when given an appropriate amount of input, come to distinctly incorrect conclusions. (Hopefully my doctors will be immune from this apparent epidemic.) Rather than get discouraged, I think back to the following anecdote first told to me by my friend Pat an eon ago. It helps me keep my sanity (and my cool).

A researcher was studying crickets.

One day she took a cricket and put it in a large box. She clapped her hands and the cricket jumped.

She then took the cricket out of the box, pulled off one of its legs, and placed the cricket back in the box. When she clapped, the cricket jumped, although not quite as high as the first time when the cricket had all its legs.

She repeated the process a second time; a third time; a fourth time; and a fifth time — until the cricket only had one leg attached. Each time the researcher clapped her hands, the startled cricket would jump.

Finally, the researcher removed the cricket’s last leg. She placed the cricket back in the box and clapped her hands. However, the cricket failed to jump. She clapped again. The cricket remained still. She clapped a third time and still no response from the cricket.

“Ah, ha!”, the researcher concluded. “Crickets without legs cannot hear.”

Thanks for checking in.

Sometimes you just have to say “enough”

Tags

, ,

The good news is my doctor got my test report and I don’t have achalasia. The bad news is that I don’t have achalasia. I say that because at least achalasia has a defined surgical treatment.

My situation is apparently something called hyper contractile esophagus, meaning that instead of a nice smooth swallow, I generate super high pressures in my esophagus and the food gets jammed up. Unfortunately there is no real defined treatment for this.

My gastroenterologist has suggested that I try muscle relaxers.

Let me see, mind-numbing fatigue caused by RA combined with a number of existing prescription drugs that also slow me down — and he wants to add muscle relaxers?

Uh, no.

I told him he could prescribe them but I’d only take them when I didn’t want to get out of bed that day.

I take about a dozen prescription drugs plus a handful of supplements. Adding yet another prescription drug (probably multiple times a day) that may or may not solve the problem is just not something that I’m willing to do. I’ve learned (out of necessity) how to eat to minimize the problem and, given the choice, I’d rather be awake, thank you very much.

It’s understandable that when we take problems to our doctors that they want to solve them for us. However, I’ve always told my doctors that it’s okay if one of the options we discuss is “do nothing.” In this situation, I think “do nothing” is the right thing to do.

So thank you, everyone, for your well wishes. I really, truly appreciate all the support. I hope whatever doctor reports are in your future are also benign. Thanks for checking in.

Testing (my patience)

Tags

, , , , ,

There are sometimes days or even weeks that go by that I don’t interface with a health practitioner. But, I tell you what, the last week or so has been challenging. Here are some updates:

  • I went in for the manometry testing for Achalasia (which, if anyone asks, was not pleasant). The testing doctor’s office worked with gastroenterologist to get me a quick appointment and promised the results would be back this week. My gastroenterologist worked me in for an appointment to discuss the results and, guess what? The results aren’t available. The testing doctor was out of town. His medical assistant was at a conference and his nurse had called in sick. So my gastroenterologist was not able to reach ANYONE at the other doctor’s office and was therefore unable to give me any information about the situation and probably won’t for another week or two.
  • The manometry was on a Friday. After the weekend, I was scheduled for some nuclear medicine testing to determine if my knee replacement was infected or had come loose. This is similar to an MRI. It’s not bad, but it’s tedious and spread out over a couple of days because the radioactive material they inject has to circulate through your body. Turns out the knee is great. However, my spine showed compression fractures and degenerative changes (which I now have to see my neurosurgeon about) and my right shoulder showed a marked increase in arthritic changes since I had it checked last (so I have to see that doctor’s office as well). My knee ortho doc, who is a super guy, had me come to the office even though the knee looked fine. He wanted to do an exam to see if he could figure out what was wrong. At the end of the exam, we agreed on a steroid injection to see if that would help (which so far it has). I am hopeful that all this turns out to be nothing more than a strained ligament or tendon.
  • The day after the nuclear imaging, I was scheduled for my biologic infusion. I am a hard stick anyway, but this was beyond ridiculous. Over a three-hour period two different people tried (and failed) to start the IV. (The entire infusion is only 30 minutes long.) They stuck me eight times without success. A couple of times they actually hit the vein but then blew it out. This was on a Thursday. They had me come back the following Monday and stuck me three more times without success. I am on Simponi Aria which is the IV formulation of Simponi which is the injectable version. The great people at Janssen (who manufacture the drug) were able to point me to some publicly available studies on the two versions of the drug and, after discussion with my doctor, I am temporarily doing the Simponi injections to get me through my upcoming vacation. I am scheduled to try the infusion again when I get back from vacation. If they have problems with the IV again, I’m not sure what I’m going to do. Medicare pays for infused medication, but injections come under the drug plan which may not be covered.

So that’s been my adventures in Medical Land lately. The good news is I am going to be off the grid for a while doing fun stuff.

I hope whatever adventures you have are wonderful. Thanks for checking in.

MTX and Booze – Back Together Again?

Tags

, ,

Methotrexate has been a core drug in the fight against RA. However, patients are generally warned about drinking any alcohol while on it. A new study, however, suggests that it may be possible to enjoy that glass of wine or cocktail.

Read my full article here at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/mtx-and-booze-back-together-again/

Is Pain a Disease?

Tags

,

It’s understood that disease is a symptom — it’s a signal that something’s wrong. However, there is a significant number of people that suffer from chronic pain and, partly because of this, the discussion is now turning to whether pain, itself, should be classified as a disease. As with a lot of things, there is good news and (maybe) not-so-good news in this. Read more in my article at rheumatoidarthritis.net: https://rheumatoidarthritis.net/living/is-pain-a-disease/

Helping those in medical need due to Hurricane Harvey

Tags

, ,

The Global Healthy Living Foundation (www.ghlf.org) has sent a list of links below that can provide assistance to those needing medical assistance in the wake of Hurricane Harvey. In addition, this link (Take Action Now) will provide you with the phone numbers and talking points for the governors of Texas and Louisiana to ask them to request the U.S. Department of Health and Human Services (HHS) activate its Emergency Prescription Assistance Program (EPAP). This program will ensure that eligible patients can receive their desperately needed prescriptions at no cost from participating pharmacies.

As a resident of Dallas, we were largely unaffected by the Hurricane, but we are now receiving thousands of evacuees as people are able to leave Houston for safer ground. These people need all the help we can give them.

Thanks for anything you can do.

Helpful links to share: