I'm combining this blog with my general blog "She's a Character, She Has Opinions." All the old posts and any new posts on the topics covered here can be found there.

--Tammy, March 25, 2012

Permalink | Leave a comment  »

“For the chronically ill, details are all. To cope with chronic illness means to routinely scan minute bodily processes. Attention is vigilantly focused, sometimes hour by hour, to the specifics of circumstances and events that could be potential sources of worsening. There is the daily quest for control of the known provoking agents. Enervating decisions must be made about when to initiate or terminate an activity, when to move from baseline medication to second-level drugs, and when to seek professional help. And all this occurs in the context of active lives that are filled with the same pressures, threats, vagaries, and exultations that make of normal living such a ‘blooming, buzzing confusion’ [James] Is it any wonder that exhaustion is one of the common shared experiences of chronic illness?”

Permalink | Leave a comment  »

We all know how important it is to eat breakfast, but it's hard enough to get everything going in the morning when you don't have to wonder if you'll be able to get out of bed. It's all about planning ahead and making it easy, while still making healthy choices.

Read More & Get Recipes at Somebody Heal Me

Permalink | Leave a comment  »

Permalink | Leave a comment  »

From the Winter 2011 NMSS Greater New England Chapter MS Connection:

"Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster--which usually shows up as the skin rash known as shingles--were more than three times as likely to develop MS over the next year than individuals who did not have an attack."

Permalink | Leave a comment  »

The question I can't answer is "what's your pain level?"

Where?

You want the pain level for my PHN? My legs? That nagging thing in my shoulder? How about my jaw? Or should I just average it out over my whole body?

It'd be easier if the nurse just handed me a diagram of my body and some crayons so I could color-code and maybe draw some lightning bolts and frowny faces over the spots where it really hurts.

Permalink | Leave a comment  »

"I will never [chronicillnesscat] 'get well soon'"

And, you know, that's okay. Really. It isn't great and it certainly isn't what I wished for, but I'm dealing. And part of what helps me deal is people around me understanding that and saying something like "I hope you get through this flare quickly and easily" instead of "get well soon."

Permalink | Leave a comment  »

I didn't write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying "yes, but it's nothing new." If someone isn't asking me about them I'm generally not paying attention to them, because these symptoms are my new normal.

So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?

The answer for me is I don't know, and I probably won't know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She's such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn't do it without her.

Permalink | Leave a comment  »

From beingmex3.tumblr.com:

This is what i did today. I made charts and laminated them so i can color each day what hurts and what the pain level is.

Its hanging on my pantry so my family can see it and i dont have to constantly be saying what hurts or saying i can do things. They can look at the chart. :P

I think this is absolutely brilliant. What a great way to communicate your pain levels and ability without having to constantly talk about it and be reminded of it. I think it would also help with any issues of giving or getting too much or too little assistance.

In my ideal world this would be computer-based so I could simply email it to my husband every day instead of my usual "this is how it is, fyi" email. I'd also like to be able to save the data for tracking purposes just in case it's needed.

Permalink | Leave a comment  »

Register with MS Active Source to get your free MS Workout or MS Yoga DVD. Note: They are affiliated with Biogen, maker of Avonex and Tysabri. When you register you agree to receive information from them. (Of course, you can type anything you want in the email and phone fields.)

Permalink | Leave a comment  »

Several inches of informational and educational brochures and presentations, three water bottles, a giant cup, five bags, pens, magnets, and more cooling pads than I can wear at one time. There was a mini chocolate bar in there, too, but sadly that did not last until the picture.

The event was more fun than I expected. Because I am my mother's daughter I chatted with a bunch of people and made a friend. (There is something wonderful about being able to speak to people who get it because they're living it.) I attended a workshop on pain and pain management and one on fatigue and learned some things. (Big note to self: arrange to see a physical therapist!) And I ate a truly nice piece of carrot cake with cream cheese frosting.

I'm tucked away at home safe and warm before the snow comes and I am exhausted. Time to file all my information before I lose it and then relax; tomorrow is soon enough to look through it all.

Permalink | Leave a comment  »

Hmm I wonder. How many people in the chronic illness circle on Tumblr currently attend college? And how do you feel about it? And if you’ve dropped out because of an illness, what are you doing now to make a living? (via leoncillo on Tumblr)

I'm one class away from finishing my BA. One class. One horrid quantitative reasoning (statistics) class. The plan was to have finished it this past Spring. I was taking it and everything was going according to plan until I had another MS exacerbation.

The fatigue was terrible. The pain, the difficulty walking, they were all hard. But what made it impossible for me to finish that class was the cognitive difficulties I developed. Since then I had a neuropsych evaluation and realized why this was all so hard for me. While my ability stayed in the 95th to 99th percentile, my recall speed was in the 21st percentile. I can no longer multi-task, something I used to excel at. Not only can I not multi-task, I can't have any distractions at all when trying to learn something. I have to work extremely hard to commit things to memory and even harder to pull them out of my memory when I need them.

Yeah, it's a blow. I build a lot of my identity on my intellectual ability and on being able to help people, and now I don't have that.

The Neuro-Psychologist was great. She gave me so many tips that will hopefully help me take and finish that one last class that stands between me and my degree. She also wrote something for my college, telling them the accommodations I need and why.

So here I am right now, trying to get SSDI after working more than half my life then having that ability taken away from me by MS. I don't know if I will ever be able to work again but I have to hope.

Permalink | Leave a comment  »

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age. The GEMS (Genes and Environment in MS) study is led by primary investigator Philip De Jager, MD, PhD, a Harry Weaver Neuroscience Scholar of the National MS Society. The study is privately funded.

There is no cost to participate in the study, and participants can reside anywhere in the United States because no travel is required to enroll in the study. Some travel may be required for the optional MRI portion of the study and the participant will be reimbursed for travel cost.

Get more information here.

Permalink | Leave a comment  »

Co-editors: Gloria Filax and Dena Taylor

Publication Date: 2014

DEADLINE FOR ABSTRACTS: DECEMBER 31, 2011!

While there are several books on raising children with disabilities, the literature is scant on experiences of disabled women who are raising children OR the experiences of those parented by a woman with disabilities. Bringing together disability with mothering has the potential to challenge dominant narratives of both mothering AND disability. Noticing dominant ideas, meanings, and/or stories/narratives (normative discourses) regarding both ‘mothering’ and ‘disability’ expose the limits beyond which disabled mothers live their daily lives.

The goal of this edited collection is to add to literatures on mothering and disability through providing stories by disabled mothers or their children as well as chapters of scholarly research and theorizing. We intend that both stories and research in this collection will raise critical questions about the social and cultural meanings of disability and mothering. Whether a birth mother, an adoptive mother,a foster mother, a co-mother, someone mothered by a disabled woman, or someone whose research explores disabled mothering, we invite you to submit to this collection.

Suggested topics include, but are not limited to:

How are disabled women discouraged from having children? How does the medical model of disability shape the meanings assigned to disabled mothers? How do chronic illnesses affect mothering? Are disabled mothers healthy mothers? How do the social and cultural models of disability shape how we understand disabled mothers and mothering? Are disabled mothers oppressed? How doissues of race,class, and sexuality affect disabled mothers and their families? Should disabled mothers ‘pass’ as normal? How are pregnancy and birth experiences shaped by disability? How do children experience and understand a disabled mother? What support is needed and received by disabled mothers? How does the built environment, both public and private, shape the experiences of disabled mothers? What kinds of issues are there with children’s schools, health professionals and/or children’s attitudes? What form, if any, does social and political activism take? Do legal remedies work to assist disabled mothers (for example, disability as a protected category in the Canadian Charter of Rights and Freedoms or the Americans with Disabilities Act)? How does a mother’s disability expose the expectations of mothering? How does a mother’s disability expose the assumptions about disability? How is society disabling of mothering? How can we ‘do’ disabled mothering differently?

Submission Guidelines

Abstracts should be 250 words. Please also include a brief biography (50 words) with citizenship.
Please send to gfilax@shaw.ca and detaylor@cabrillo.edu
Deadline for Abstracts is December 31, 2011
Accepted papers of 4000-5000 words (15-20 pages) will be due October 15, 2012

Permalink | Leave a comment  »

Permalink | Leave a comment  »

The theme for this year's Invisible Illness Awareness Week is "deep breath, fresh start." Boy, do I need both of those.

But after a while it all began to wear on me. Managing chronic illness is hard and it takes all my resources just to do that. I don't have a lot left for anything else. This year's IIAW theme comes at just the right time for me. I hit a crisis point and I took a deep breath. Then I made a plan so I could make a fresh start.

This post barely skims the surface of my life, but right now it's all I have to give. It's also part of my fresh start, which is really me getting back to the basics of who I am.

Deep breath.

Fresh start.

Permalink | Leave a comment  »

By Diana Lee of Somebody Heal Me. Read her full post here.

Coping with a crisis is and probably always will be hard. But with a better idea of what helps me push through I have more confidence in my ability to survive just about anything. You can do the same by coming up with an approach that suits your needs and tendencies before you need to cope with your next crisis.

1. Breathe.
2. Focus on being rational and maintaining perspective.
3. Lean on family and friends.
4. Ask for help.
5. Be kind to myself.

Self-Care. For me, the first thing that goes in a crisis is taking care of myself. I get so focused on the crisis--and on solving it--that self-care goes right out the window. Am I eating? Am I remembering to take my meds on time? Am I resting when I need to? No, no, and no. I have to make sure I am physically well before anything else can happen.

Panic if You Need to Panic. Seriously. Get it out. Do it alone, write it down, call your friend, talk to your dog. If part of what you need to do in order to get to a place of calm and focus is to go through the panic, then do it. Often it helps me to see the worst case scenario written out so that I can then recognize things aren't all that bad.

Organize & Prioritize. I'm a listmaker, always have been. Having a clear list of pros, cons, and any other little details right in front of me helps me figure out what to do and when to do it. Also, having all the details in front of me like that makes it easier for me to cope with any illness-caused cognitive difficulties I might be having, and less cognitive issues means a calmer me.

Ask for Help. I agree with Diana, this is a big one. It can be difficult to ask but sometimes admitting you need help is the only thing standing between you and getting it. Ask your family, ask your friends. Depending upon what the issue is, do some googling and see if there is an organization that might be able to help.

Know Yourself. As Diana writes, know your needs and tendencies. What triggers you? What calms you? When is your best functioning time of day? When is your worst? Have a good idea of when you are best able to tackle the crisis before you even begin, that'll give you a better chance of success.

Permalink | Leave a comment  »

Passing on the information.

Protocol Title: Exploration of parameters of tDCS in chronic pain patients.
Protocol #: 2010-p-000990
Principal Investigator: Felipe Fregni, MD, MPH, PhD.
Laboratory of Neuromodulation
Spaulding Rehabilitation Hospital
Teaching Affiliate of Harvard Medical School

Do you have chronic pain due to fibromyalgia?

If so, and you are between the ages of 18-64, you may qualify for this research study. Fibromyalgia is an example of "chronic musculoskeletal pain."

Volunteers needed for current research study

This study uses a technique of non-invasive brain stimulation called transcranial direct current stimulation (tDCS). The purpose of this study is to investigate if this type of stimulation can change pain perception in people who have chronic musculoskeletal pain.

Testing will involve a total of 5 visits at Spaulding Rehabilitation Hospital, located in Boston, MA. Participants will be compensated $12.50 per hour for partaking in the study, and parking will be reimbursed. For more information, please contact the Laboratory of Neuromodulation by phone at 617-573-2499 or by email at recruitment@neuromodulationlab.org.

Permalink | Leave a comment  »

Check out, follow, and contribute to Chronic Illness Cat on Tumblr. Here are some of my favorites:

“Innocently read story about American Health Insurance; Spend rest of day in fetal position under desk, obsessively adding up the cost of your meds.”

“'Oh, I wish I could stay home all the time! That would be so amazing!' Yeah, it’s fantastic. I love not leaving the house for days at a time. Because I can’t.”

Permalink | Leave a comment  »

Originally posted at Life In Pain (dot org), author unknown. Via Shauna's Life in Pain.

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

Permalink | Leave a comment  »