Feeds:
Posts
Comments

Ponderisms

[object Window]

via Ponderisms.

I just uploaded a new blog post to Ancient Reptile. Please do check it out!

Himself, bless his heart, is accompanying me to San Diego so I can speak at a small educational section at the annual American College of Rheumatology (ACR) meeting and educational sessions. Himself will be taking care of me – and I will be taking care of him. Most of our disabilities seem to “complement” each other, so I can help him and he can help me.

We will both be volunteering at the RPF, the Rheumatoid Patient Foundation, exhibit. We’ll answer questions about the organization and encourage people to join and become involved in our fight against Rheumatoid Disease (formerly Rheumatoid Arthritis). If YOU haven’t visited the website, please do. And join!

{More information about past meetings of ACR may be found on several posts at RA Warrior: HERE and HERE-2012A and HERE-2012B and HERE-2011A and HERE-2011B and HERE-2011C and HERE-2011D and HERE-2010A and HERE-2010B and HERE-2010C.}

A person with Rheumatoid Disease (PRD) has special things to consider when packing up and going anywhere. Today I started packing – that means I had to separate out the dirty clothes I need to take and to separate out the new clothes that I need to be rinsed out before being worn (or even packed!). Jewelry for each outfit. Shoes – clean? need to visit the shoe guy on Monday? Medications – a dosepak of Medrol is a necessity. I need to see about extra Medrol, and be sure I have enough of my other meds to get me through the trip. All this will take me 3-4 days!

Asking one of the kiddos to pick us up and drive us to the airport at that ungodly hour of 5AM!!

Saturday – take the cat to the Vet for boarding. Call TSA at Airport to give up assistance boarding (we’ll both need wheelchairs to the gate, and wheelchairs to meet us at plane in San Diego. Get to bed VERY EARLY on Saturday – have to be UP by 4AM on Sunday and leave at 5AM to be at airport by 6AM. Plane leaves at 8AM.

Crossing 3 time zones will be difficult east to west, but when we return on Thursday, it will be horrible going from west to east.

All this will leave us totally FLATTENED and we will need a minimum of 3-5 days to recover and recoup.

WHEW!

My Mother’s Keeper

This blog [I am My Mother's Keeper - A Job I Cherish!] reminds me, somewhat, of my mother’s last few years.

Momma about 1940

Momma about 1940

Momma about 1955

Momma about 1955

Momma (left) in Nursing Home about 1977

Momma (left) in Nursing Home about 1977


It certainly is a cautionary tale for all relatives, friends and caregivers. It can help prepare for what is, all to frequently, the future of their lives. No matter how many siblings or children there are, or how deeply they are (or are not) involved, care-giving usually devolves down to one person or one family group.

With the recent admissions that there really are to be “Death Panels” related to Obamacare, relatives and friends more and more will have to be assuming care-giving to the elderly and chronically ill. This is a step backward from our current system, but actually could be a step forward from the impersonal care currently given. It retreats to the days in which family and friends were closer and more involved with the elderly and chronically ill, but could be a step forward to more hands-and-hearts-on care. Instead of living one’s last days among a group of strangers, one can live at home with loved ones close by. There would seem to be more opportunity for saying all the things that need saying before someone dies.

Yes, there is the problem of “too much burden” on the home care-givers. Smaller families and individuals will be forced to rely on friends, acquaintances, Churches and volunteer groups. Is this bad? The transition to more family care-giving will be UGLY! But the final “product” has the potential to be very good.

“Author and organizational consultant William Bridges developed a model that explains the process of transition. This three stage model focuses on the adjustment that people make when they are going through a transition. Bridges states that “transition starts with an ending and ends with a beginning.” [Bridges' Transition Theory in imjoeboe blog].

Bridges' Transition Theory

Bridges’ Transition Theory

It’s that “neutral zone” that can be UGLY! Change is always difficult. Aging and chronic illness are difficult – and can be UGLY! Surmounting those difficulties and the ugliness can become something to look back on with pride – after the grief! Grief is something I will deal with in another post.

Helps Getting Dressed

I was researching Multiple Sclerosis after a discussion about it with Himself. Like RA, MS is an autoimmune disease. Unlike RA, it is pretty much confined to the neurological system, but it wreaks havoc there. It inexorably progresses until the patient is pretty much bed-ridden. But I was fascinated to find an article that discussed in specific detail the kinds of daily accommodations people with MS must make. Many of those accommodations are things that would help those of us with RA. So I thought I would discuss these in a series of posts. This first one is about getting dressed, and the things we can do to adapt to decreasing coordination and strength.

  • Get dressed while sitting in a chair that has arm rests. This will help you keep your balance. 
    • Note from Turtlemom: this will also give you a place to rest your arms to reduce fatigue.
  • Roll from side to side to get pants over your hips. You can do this while sitting in a chair or lying down on your bed.
  • Wear clothes that are loose-fitting and have elastic waistbands.
  • Choose wrap-around clothing instead of the pull-over type. Also choose clothing that opens in the front, not the back.
    • Note from Turtlemom: Finding bras that fasten in the front – that actually fit and give support – is very difficult. Especially for those of us who are, shall I say, “over-endowed.” I have gone through one brand and style after another. My search continues…
  • Wear clothing with large, flat buttons or use Velcro closures.
    • Note from Turtlemom: I’m not to the Velcro closure stage, yet. I do have jackets and coats with large buttons – they make a BIG difference!
  • Use a buttonhook to button clothing.
    • Note from Turtlemom: As I mainly wear tee shirts and other over-the-head shirts, this is not a problem, as yet.
  • If you have shoulder weakness, use a dressing stick to get your coat or shirt on and off.
    • Note from Turtlemom: This I may have to invest in during 2012.
  • Use a zipper pull or attach a leather loop on the end of the zipper to zip pants or jackets.
    • Note from Turtlemom: OR, use elastic-waist pants and skirts. I do have a loops either of leather or braided thread or string on the two jackets that have zippers.
  • Use devices such as a sock aid and a long-handled shoehorn for additional assistance.
    • Note from Turtlemom: Now, I do have a Carex Sock Aid that I got through Amazon that I use during flares. I will say that it was especially helpful for about the first 5 weeks after  I had my knee replaced back in September 2011. With me mostly wearing Crocs, I usually don’t need a long-handled shoehorn. Occasionally, though, I wear athletic shoes, and I use elastic shoelaces and my long-handled shoehorn (purchased from my local Red Wing Shoes Store) at those times.

I can do many things myself with just a little assistance from the ingenious devices available from the many suppliers that abound on the internet and through paper catalogs. Here are a few of my favorites:

The Wright Stuff (Daily Living Aids Page)

Allegro Medical (Dressing Aids Page)

Buck and Buck

Disability Products (Dressing Aids Page)

Last, but not least, there is Amazon.com! They have an amazing amount of disability assistance products in their Health & Personal Care section.

I will admit that the clothing leaves a lot to be desired. The women’s clothing is all big flower prints or in “little old lady” colors. But looking at the adaptive methods used, I can get my daughter or one of her “sewing friends” to make one for me. I can go to little craft shops and find things to use to attach to zippers that I can grasp and pull. There are also hooks I can use to attach the pulls.

Joann’s,

Hobby Lobby,

and Michael’s

are all good sources, and the people there are friendly and helpful.

One last thing – check the non-disability websites, too. Their products are considerably cheaper, and the products usually don’t look like the disability clothing lines – more stylish, etc. I would only get the more expensive disability clothing if I couldn’t find anything more stylish and, perhaps, less expensive, that could be adapted.

Please let me know of adaptations you use when getting dressed!

A Real PotHolder!

Sorry I haven’t been posting much. My own RA flares, Fibromyalgia flares and severe fatigue have just kept me down for about 5 months, now.

But, I’m back, now, and want to share something from Wright Stuff. It’s a pan holder. It keeps a pan on the stove from moving as you stir it. Wow! What an idea?


It does work best on an electric stove, but if you are careful, you can use it with a gas stove too. Doesn’t matter which hand is weak, it works ambidextrously.

The only thing I would add is a lip or handle on the other side of the pot. Picking up a pot that size with food or liquid in it can be difficult. A lip on the other side facilitates picking it up without burning yourself (assuming you use a pot holder!) or spilling. :-)

This is a great little accommodative device!

Life Accommodations

“Alas, physical energy must be conserved, but the engine inside the soul revs up just the same. Every day, I hear people with RA talk about the frustration of these restrictions and limitations. If physical energy remains limited, maybe we can become limitless at something else – like compassion or patience or joy.” Quote from RA Warrior blog. http://rawarrior.com/severe-rheumatoid-arthritis-can-leave-you-stuck/

We RA’ers have very limited energy reserves. This keeps us from doing many of the things that tend to define us. In my case, it has prevented me from attending Church. Now, those who “knew me when” know that my favorite place to be was and is in Church. The Ol’ Curmudgeon and I were there for most of the services. Because of our distance from the Church, we usually did not attend Vigil, but were there for everything else.

As we got older, we had to do more “picking and choosing” of the services during Great Lent and Holy Week, and that was most disappointing. After the Ol’ Curmudgeon’s first angioplasty, he was unable to direct choir anymore, and was unable to attend the Liturgy every week – we managed about every other week. Meanwhile, my energy reserves disappeared, and I was diagnosed with fibromyalgia – but we now know what I had was really early RA. I had to leave services earlier and earlier.

As a person who has always been very adaptive – I could adapt to nearly anything – I looked around for ways to retain and grow my Orthodox Christian faith while recognizing my limitations. I found them in books, on CDs and the internet. It has been disappointing to not find help on TV or DVDs, but clips on YouTube are helpful.

What has been most helpful? In addition to the Jordanville Orthodox Prayerbook, the Old (Orthodox) Believer’s Prayerbook has been wonderful. The translations are very beautiful and not awkward. There are many additional prayers not found in other prayerbooks. Another book is Prayers by the Lake by St. Nikolai Velamirovic. This book is also available on-line. The books by Johanna Manley (The Bible and the Holy Fathers for Orthodox, Grace for Grace: The Psalter and the Holy Fathers, Wisdom, Let Us Attend: Job, the Fathers, and the Old Testament, and Isaiah Through the Ages have been of inestimable help. The “Book of Akathists, Vol I and Vol II, from Holy Trinity Monastery in Jordanville is wonderful. I also have the Lenten Triodion and the Festal Menaion by Archbishop Kallistos and Mother Maria. The translations are delicate and euphonious. They evoke the sense of deep joy inspired by actually being in Church. For daily devotions, The Prologue from Ochrid (mine is the early, first edition, in 4 volumes that could be purchased individually – made it easier to purchase) is essential to me. The Menologion-3, A Troparion and Kontakion reader for Windows, with Lives of Saints and daily Bible readings, is extremely helpful when time is short, as is Horos (St. Anthony’s Hours of Prayer), a computer program that pops up on the Liturgical Hours with a Psalm from that service.

I have downloaded many videos from the internet and converted them into MP3s so I can listen to them on my SansaClip (a very small MP3 player) as well as watch them on my computer. I also have converted some of my particularly treasured Orthodox music from my CDs to MP3s to listen to when I’m away, or want to listen when my Ol’ Curmudgeon doesn’t want to listen.

What do I wish for? I want St. Nicholas to bring me (and thousands of other Orthodox shut-ins) live, streaming videos of the Slavic-style Divine Liturgy on a weekly basis. I often watch the GOA live, streaming video of the Divine Liturgy, but my spirit longs for the Slavic music and English. None of the CDs really suffice for this.

Of course, I pray for healing – both for my Ol’ Curmudgeon (who isn’t doing real well energy-wise following his third angioplasty 2 years ago) and for me. Until God does that, we continue to adapt. But we are aware that, like many other people, our “golden” years are much less than “golden.”

After I was trapped in the bathroom (couldn’t turn the dratted handle because my hands were flared, couldn’t use my forearms because of the angles involved), my husband had lever handles installed house-wide. It was well worth the cost. On really “difficult” days, I put a “pull” on the handle and Emmy opens it for me!

Himself and I also planned out and had a new kitchen installed that lets me sit to do most of the things I need to do, and is big enough for him to do what he needs to do – finally! (My friend, Denise, in Savannah, would LOVE this kitchen!) The renovation was trying, but we survived. Energy-wise, we are still recovering – 2 months after completion.

We are gradually re-defining ourselves, taking our physical limitations into consideration and adapting as much as we can in a positive manner. RA continues to eat into my joints, and makes various tasks and activities more difficult.

We accommodate to our handicaps and make each day as good as we can make it, thanking God for His grace in giving us the ability to adjust, improvise, adapt, and accommodate (if not overcome) our handicaps.

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: