Tuesday, September 29, 2009

a question of balance



Happiness is not a matter of intensity but of balance, order, rhythm and harmony.


Thomas Merton




I can't take credit for this photograph. I took quite a few pictures of the sunset on the Pamlico River while on vacation but none as amazing as this one taken by my Daughter In law.

I enjoyed our family reunion. All of Bubbie's Babies in one place. We had a wonderful time.

I have been doing so well I find I have been wearing a permanent smile. People have taken notice, wondering what I'm smiling at. I guess when you've been beaten down with heavy limbs, pain, and fatigue, a genuine smile doesn't come easily. I feel renewed. Having been there and now experiencing the other side I can't help but be ecstatic. I'd say that I am well aware of the extremes.

I am now being reminded of keeping a balance. Libra that I am, extremes are more familiar, but balance is necessary to my well being as a whole.

I've gone from barely able to ambulate with a cane and sometimes walker, to walking with an assured gait with just some discomfort and numbness. I can handle that!

I have gone from a sedentary life, dragging myself from one task to the next, even foregoing tasks for naps, to working a new part time job and functioning without an outward sign of chronic illness.

I went from taking daily or weekly injections and handfuls of pharmaceuticals, to taking one daily med (plaquenel) and my vitamins and supplements.

I have already lost 20 of the pounds I packed on over the last shadowy 5 years and now see the glimmer of who I was and want to be. I'm taking better care of myself, carefully choosing my options everyday.

I am not so naive that I don't know that all of this new found well being could change in a heartbeat. That's life...and part of the grand illusion. But I do believe I have a new perspective that will enable me to keep a healthier balance, order, rhythm and harmony in body, mind and spirit.

I regret having not been actively posting to this blog. I do read your posts. I care about you all, wish you all the best and try to stay in touch on that terribly addicting FB site.
I've been busy working, painting, walking , smiling and enjoying the scenery.

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Tuesday, August 11, 2009

Post-itis Zen Bubbie



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Ahhhhhhh. Deep breath. Ahhhhhh.

These pictures were taken at the Norfolk Botanical Gardens.


I haven't posted in so long. I guess time does appear to fly when you're having fun. I feel good.

I am good.


My guess is that I identified this blog with my physical body and it's problems, or my problems dealing with it. If I had nothing to say along those lines, I didn't know what to say. SO...I am no longer identifying myself as a person with MS. That was easy, because that's what the recent physical evidence proved, and I was more than willing to let it go. Is it coincidence that I feel good? Did I buy into an illusion? Am I willing to not allow another to replace it?

The Bubbie has been pondering this and more...

MEANWHILE, back to life on earth:


I'm awaiting to hear the news tomorrow . My daughter is having her 2nd ultrasound that will reveal the gender of the baby. We'll see if I bought the right color yarn for the blanky I'm making.

I got a call this morning from my cousin. She and my Aunt liked my Poinsettia Christmas cards last year so much that they would like to put in an order for some to send themselves. This gave me a new project and direction. I can't just recycle last years holiday image. I have to get busy and paint more! It's mid August! I'd better get busy.

Chop wood, carry water? Chop water, carry wood?



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Tuesday, July 21, 2009

Bubbie-itis

Bubbie-itis.
That's what I've decided I have.

"itis" denotes inflammation as opposed to "osis"which implies pathology that is chronic or degenerative but without inflammation.


Sorry this post is seriously dated. I was too symptomatic to think about it let alone post about it at the time. And then I took off for a few weeks on a road trip.



Since my RE-diagnosis of Sjogrens CNS Vasculitis (see...another itis) and Mixed Connective Tissue Disease, (isn't this all the same?) I have been sent to a different specialist for every part of my physical body. My shrink hasn't seen me yet, but I'm waaaaay overdue. I have been getting a crash course in autoimmunity. I thought I knew what I could expect when I only had MS and actually got to a place where I was alright with that. I think I managed to integrate a life for myself that didn't always revolve around the disease.



Did you know that there are over 100 different autoimmune diseases? I knew about Rheumatoid Arthritis, Lupus, Scleroderma and Multiple Sclerosis, but there are tons more. I read somewhere (sorry can't find the source) that the four most common autoimmune diseases are more prevalent than cases of cancer and cardiovascular disease combined, yet only receive a fraction of the budget for research from NIH.



Before, I had a picture in my mind of rouge white cells munching on my myelin. As varied and unpredictable as the outcomes of those munched wires were, I still thought I pretty much knew what I could expect.



All of the standard MS disease modifying agents had been of no use. I continued to have new lesions and had the added benefit of all the nasty side effects. Having been off all shots for some time now, I had resigned myself to just treating symptoms on an as needed basis, while keeping a look out for any new promising treatments should I be in the mood to be a Guinea pig again.


Now I have an image in my head of thousands of white cells that somehow resemble a cross between Don Quixote and Mr.Magoo on crack. Blind, and crazy, they are mistaking windmills for dragons, friend for foe, good cells for bad. Not happy with their steady diet of myelin, my Magoos are raising hell with my joints, stomach, esophagus, and skin, hence the "itises".


So, I have been under the care of Dr.Chicken Little. (the brilliant doctor who has no internal censor. Whatever he's thinking comes directly out of his mouth without delay. It was unnerving at first because I always get to know what the worst case scenario might be. It's also humorous when he looks at your chart and declares 'your getting fat' or 'old', and I get to reply in kind.

He started me on weekly Methatrexate injections. And I thought interferon's were hell...
I have a new found empathy for those undergoing full strength chemo treatments. Even with leucovorin (folinic acid) to counteract the side effects I was miserable. Ask anyone who had to be in my presence. I ached, hurt, threw up, developed new infections, moaned, groaned, bitched, and cried.

What a wimp! I know people who take this drug regularly and deal with it . But then I know people who happily took their interferon shots too. My tolerance for such poisons are obviously below the norm. It's kinda funny when I think of all the 'poisons' that I happily endured recreationally at one time in my life.....long long ago. But, there was nothing funny about this and after 3 months Dr.C.L. gave me a reprieve.


Since MTX is not something I ever want to repeat, it was suggested that I look into (he knows I take nothing without researching it first) trying Arava. Leflunomide.



During this time Bubbie's Hubby was planning his well deserved vacation, and looking forward to getting away. The idea of driving for miles and being overjoyed to be here or there taking snapshots and making memories made me want to puke some more. Luckily the ill effects started wearing off and totally dissipated by the time we left our first stopover on our trip.

We had a great time... check out pictures in next post. I feel great! WTH! I drove some. Hiked some. (yes! hiked!) Walked a lot. and the kicker.....WITHOUT A CANE!

I'm still taking meds for the various itises. Plaquenel for the major one., but I haven't taken a pain pill in over 3 weeks. Knock wood. Throw salt. Do something.

I have no idea what to attribute this miraculous change up. It could be the ups and downs of flares associated with autoimmune diseases, it could be that the MTX knocked the shit out of those errant T cells or it could be that I need to get away more often.

What do you think?







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Wednesday, June 17, 2009

Never Mind




For the last two weeks I have been attempting to post a new blog entry updating you loyal readers about my "about-face" diagnosis and how things are going. It's been interesting...and it will be if Blogger ever lets me publish it. It's not being censored, it just isn't cooperating with me. Whole paragraphs of delightful and witty thoughts have vanished before my eyes. And since delightful and witty thoughts are not easy for me to come by these days...well you will just have to wait for the upcoming (someday) post entitled "Bubbie-itis".

The Bubbster is going on a vacation...so don't be holding your breath and turning blue in anxious anticipation.

See you next month.

Thursday, June 11, 2009

Flowers for Sherry








PINK ROSES - 2001Image by Oishi Kuranosuke via Flickr


I can't begin to imagine the pain and grief of losing a child. My heart goes out to friend and fellow blogger Sherry at Word Salads.

Her daughter Nicole passed away suddenly after a brief illness at the age of 34. I'm glad that Sherry was able to be there with her, and only hope that we can be there for Sherry in these most difficult times.







This is a prayer I find comfort in that I'd like to share with you all.






The Light of God surrounds me

The Love of God enfolds me

The Power of God protects me

The Wisdom of God guides and directs me

Wherever I go, God is

And all is well

And so it is

Amen.

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Wednesday, April 22, 2009

Minus One

I guess it's time to take my name off the MS registry.
( Sorry, Ms. Cheese, you'll have to recalculate.)


No! I haven't been cured. I still have all the pretty white spots on my MRI indicating lesions from demyelination. I still have balance problems, bouts of optic neuritis, muscle spasms, numbness, tingling, nerve pain, bladder dysfunction, extreme fatigue...ahh the list goes on and on....

Now add to that, dry throat (explaining why I choke on food), dry eyes, digestive problems, kidney problems and new joint pains to dance with my nerve pains.

My new diagnosis is Sjogren's Syndrome

WOOOT you say?

Actually I exclaimed quite alot of expletives when i was faced with that announcement.

I always thought that Sjogren's was a minor annoyance, dry eyes, dry mouth..big deal.... WRONG. In many cases the symptomology does not go farther than that, but like MS everyone is different. In some cases, Sjogren's can and does mimic Multiple Sclerosis when in invades the central nervous system.

I had to read the studies myself to be convinced...and honestly even now, I'm still shaking my head.

Here are some articles you may find interesting:

Neurologic manifestations in primary Sjögren syndrome: a study of 82 patients.



The prevalence of Sjögren syndrome in patients with primary progressive multiple sclerosis.


Myelopathy in seronegative Sjögren syndrome and/or primary progressive multiple sclerosis.




I was tested for SS years ago, before I had my MS diagnosis. The blood tests were negative. The explanation... Not enough antibodies swirling around at that time? I just don't know.
Some articles suggest that MS and SS can coexist with the Sjogrens being secondary. Other say it often mimics MS and is not diagnosed until the joint pains and sicca symptoms arise.


I found this web site very helpful and was told that the two women that founded it were first diagnosed and treated for Multiple Sclerosis before they found it to be Sjogren's Syndrome with CNS involvement. Sjogren's World


So, it walked like a duck, quacked like a duck, but it was a goose!

I guess it doesn't matter what you call it. Treatments are similar, with the exception of the DMD's, which might explain why I did not repond to any of them. The suggested treatment is methatrexate or cytoxins, and steroids, but as is often the case the potential risks of side effects need to be weighed against the benefits of use.

I have been attempting to adjust, both mentally and physically to this new development. I might be less dizzy if I could just stop shaking my head.

Monday, March 30, 2009

Melville , Karma and Big Ta-tas

'We can not live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our action run as causes, and they come back to us as effects'.
~ Herman Melville

This quote struck a chord with me recently. With my brain just a little too hazy to say what I feel succinctly, this quote followed by my rambling will have to do.

It's been less than 2 years since I began to Blog. I'm not sure what prompted my venture into cyber-sharing. I had been reading other MS Blogs, but I was reticent about being "revealing" or God forbid - "whiny".

Through blogging, I have felt less isolated. I don't live in a cave, but it is true..."you don't get MS unless you get MS". (You know, we look so damned good)
I have received and hopefully shared encouragement as well as personal experiences with the medical profession and the wild world of meds.
I have LMAO with many of you ( I find emotional lability to be a perk) as well as sharing the choice expletives about how this disease sucks.

Recently there has been a weird (even for me) twist in my symptoms/diagnosis/prognosis. For this reason, I haven't posted much and I haven't painted much. In fact I haven't done much of anything but shake my head and attempt to regain my psychological and physical footing. You could say that I am "working off Karma".
I was laughing and chatting with an old friend of mine this past weekend. We were discussing how I always hesitate to answer the question, "how are you doing?" I mean...really? How many people actually asking that question really want an honest answer?How many want an answer at all? If I answer, "Great!" They probably got the short response they were looking for in their attempt to be graciously concerned, but I on the other hand end up being a freakin' liar. Ahh, then there are those who subscribe to the principals of quantum mechanics. "you are what you think". I don't think , I know I feel like dog crap .
She retold a story to me of an enlightened master and his wife taking a trip on a train. His wife's purse was stolen on their journey. As he told it, his wife's purse was not stolen from her, she was relieved of her purse! It wasn't a tragedy, it was a blessing. She was working off Karma. LOL So my friends..how am I? I'm working off Karma! LOL

Even through this process, reading your posts helps keep me on more of an even keel. Sorry if I fail to leave a comment, just know that I do appreciate being a part of this community.

Despite the nearly 10,000 hits to this humble blog, the people (yes...REAL people) I have felt a connection to through our shared human experience have been in the minority of my page hitters. According to my page statistics most people come to my blog after searching for something less wholesome.

Although I adore the moniker given me by my grand daughter these are not the pages on which to find among the many synonyms: tits, hooters or big boobies. It didn't help matters much when I published a rant titled
Woman to Woman after reading an article/advertisement for designer vagina's.

Then there are those *shudder* that think I must be an eighty year old Jewish Grandma and they are still looking for ta-tas. What is the matter with you people?????

So for the record:

I am a grandma. twice.
I've been around only 50 years. I doubt I'll see 80.
I was raised Catholic
and...despite being a bad Catholic girl, you can't see my tits!

Wednesday, March 25, 2009

Well, I've never been to Texas....





* as she sings, "but I kinda like the music".


That was Spain, but...WHATEVER!

It's true, I've never been to Texas, But a small sampling of my salivary glands have been. They left the inside of my lower lip last Thursday , got themselves to the University of Texas to be studied for the presence of Sjogrens Syndrome.



The procedure was basically painless with just a few disolvable stitches, but for three days I had lips that rivaled those of the OctoMom.
I have been told that the lip biopsy is the definitive test for the presence of Sjogrens. An earlier battery of blood work was somehow not conclusive, even though it also read "positive".

As with most things medical, the more I read about Sjogrens the more I don't understand. It can be as simple and annoying as having dry eyes and mouth (apparently from those pesky white cells attacking and destroying the cells in your glandular tissue much as MS does with your myelin sheaths) to having a host of symptoms from it affecting your joints, organs and central nervous system.

Who knew?

Friday, February 6, 2009

Bite Me!


And so it goes...my personal journey just gets, more bizarre, more exasperating and it's funny too. (or that's just my E.I talking)
Adding to my list of new meds, the last one being bird poison (4-AP) I now have an antimalarial. Plaquenil.

Lisa over at Brass and Ivory posted about people who have one autoimmune disease often double-dip and are diagnosed with yet another. It seems to be prevalent with Multiple Sclerosis and Rheumatoid Arthritis.

On a recent blood test that was ordered by my neuro after I listed symptoms that were not explained by my MS, I had a positive speckled ANA. I had no idea what that meant, it sounded like an Easter egg of some sort. Upon asking my neuro he responded by announcing that it wasn't his department. I needed to go back and see my old friend, Dr. Chicken Little, my rheumatologist.

Dr. C. Little (not his real name, the moniker I gave him when I realised that whatever horrible possibility he is thinking spilled directly out of his mouth. His real name is stranger still) was given my case by my first neuro before my MS diagnosis. I had aseptic menengitis, lesions in my head, and a list of neurological symptoms. I was a mess. They did all these same blood tests then but had nothing conclusive. I was treated with Cellcept and Imuran which I did not tolerate for long. Then finally I was given the diagnosis of MS even though it presented itself in a manner that kept it in question for some time. So, I hadn't seen Dr. Little in over 4 years until this speckled whatever showed up.

To my amazement he remembered everything about me. I found this both refreshing and unsettling. He ordered more tests and announced that I now have Sjogrens Syndrome. WTF!
Well, I do have a dry mouth...thought it was cotton mouth from my...ahemm...medications.
Not knowing much about Sjogrens, I thought it was nothing more than a little dry mouth, eyes, annoying little disease. Hell...I deal with MS, what's a little dry mouth? WRONG! Sjogrens can effect not only your glands from producing moisture, it can effect your brain and CNS (like I need something else to effect my brain), lymph glands, joints causing pain, internal organs including liver, pancreas, kidneys, lungs. This Sjogrens thing is not a welcome addition.

Back to the skeeter. I was told that Plaquenil works well for Sjogrens. They don't know how, but it does. WTH...I'll try it. Side effects seem to be minimal from what I've read. And as an added bonus It would seem that I can stroll around the African continent without concern if I so choose.

I'll have to learn more, obviously. It seems that a drug that works for one autoimmune disease can actually worsen another. A fact that I'm sure other double dippers have found to be true. I have been told that it would be in my best interest to start methotrexate, it would treat both Sjogrens and Multiple Sclerosis. I'm not sold on that idea. I have follow up appointments with both Dr.C.L. and my neuro in the next few weeks. I have time to think about it, even though I'd rather NOT.

Any input from some of the other "double-dippers" out there would be appreciated.
drug,

Saturday, January 31, 2009

Busy Bubbie

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I know I haven't posted in quite some time.

The Bubbie has been busy with a capital B.
I had company before Christmas, and then had all of Bubbie's babies here for the first 2 plus weeks of January. We all had a great time, and being the Bubbie that I am, I have hundreds of pictures to prove it.

Lucky for you I won't bore you with all the pictures of adorable grandchildren
I took.
In all of that fun and chaos, I managed to make and break a few New Year's resolutions. The one that I have kept was to continue painting . Last year I vowed to get off my whiney MS arse (with some prodding and encouragement from a friend or two) and get back in the game. It WAS my game for most of my life. I was a painter, I worked professionally. It was what I did, and to a degree, who I was.
Now after a year of painting with watercolor on paper, I vowed to continue, but this time to push the envelope a little farther and add another challenge. Now that I have had some of the confidence return that had left me flat after not working for 5 years, I am going to pursue painting oils on canvas again.

This is my first attempt. It's a local beach. I'm pretty happy with it for a first attempt. It was done with a palette knife and thick paint. I'm studying painting the "temperature" of color.

I have to say that getting back to what I enjoy doing has done more for me physically and mentally than any drug that I have tried for my Multiple Sclerosis. It keeps me occupied. It's a diversion from the focus I've had for too long on my disease and it's symptoms. I'm not saying that I don't have my challenges. Optic neuritis has been my biggest one lately. I'm learning to deal and compensate for the way I perceive color. Double vision, vision and a half, vision and a quarter...I hate it when that happens.
It might make for some pretty trippy paintings though.

Wednesday, January 7, 2009

In the Pipeline





There are many new drug therapies for Multiple Sclerosis in clinical trials. I read up on them when they have come across my Google Reader. I've given up on the ones that are already approved. They either didn't work for me or I found that my quality of life from the side effects was too much to trade for a promise of slowing my disease's progression.

I did begin two months ago on 4-AP. It appealed to me as it promises not to cure or slow disease progression, it works to help damaged nerves conduct better. It also is not in the hands of Big Pharma...yet. You have to get a compounding pharmacist to make it for you. I had to do some research. Lisa at Brass and Ivory helped quite a bit. Thanks Lisa.

Well, I have enough evidence of nerve damage. Walking has been my major challenge. I could walk with a cane on good days, and a walker/dog stroller (another story) on particularly (or peculiar) bad days. Walking was my major cause of exhaustion. Just how much does a human adult leg weigh anyway? It felt like I was dragging around one hundred pounds!

I have to admit I was skeptical that the 4-AP would do anything. I felt almost immediate results that I still was slow to give the drug credit for. I thought that maybe it was the cooler weather. The Florida temps dropped to a frigid 50 degrees a few nights. (sorry Seattle) Or I thought that maybe I just hit one of those elusive remittance periods that I have heard so much about in RRMS. But now over 2 months into it, I'm becoming convinced that it works. Even neighbors have commented on how well I have been walking. I still carry my cane, but rarely need it.

I read this in the MS Foundation newsletter today. Apparently Acorda Therapeutics has been doing trials on 4-AP that they have made in a slow release patentable formula.

Read the rest of the article and see what else is in the works. It gives me hope.




In the December 2008 National MS News :


Treatment/Pipeline
• Walking speed improved significantly in a clinical trial of 240 people with all types of MS taking Fampridine-SR (MS-F204, Acorda Therapeutics, Inc.) compared with those taking inactive placebo. Fampridine-SR is a sustained-release formula of 4-aminopyridine, which temporarily enhances nerve signaling. The company is planning to file in 2009 for approval of this drug to treat mobility issues in MS.

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