Thanks and No Thanks

While I have been in my funk and not keeping up my blog, I have actually been blessed with many things. Primarily, the blessings have taken the guise of people, so many people, who have expressed love and encouragement to me.

There have also been things that have been kind of crappy.

So I have made lists of each.

Thankful for:

My friend Christine. She has done things like bring me books when I was in the hospital and even my kids didn’t come visit me. She makes me laugh. She tells me I am wonderful. She introduced me to chocolate peanut butter pie. Oh wait, I am mad about that last one. But I still am grateful for Christine.

My sister, who I might go for weeks without seeing or speaking to, but we will start in mid-sentence where our last conversation ended. She knows. She gets it. I am glad she is my sister.

For Jane. Jane is a brilliant and hilarious writer from England. She writes a shriekingly funny blog http://www.janeturleydiaryofamadhousewife.blogspot.com/, which I love, and she writes for the BBC, which makes me dead jealous. Jane threatened me with [her] nudity if I didn’t start writing again. However, Jane dear, you forget about the picture of you standing behind the Prehistoric Woman picture board. I am so stupid, I didn’t realize it was a picture board and thought it was actually you, topless and dressed in furry rags. Right. In public, standing next to your husband and two of your children. Never mind how scary it is that I didn’t give it a second thought and considered you more brave than weird. My point is I already thought I had seen you naked. So that’s not much a threat now, is it Jane? You will have to come up with something better than that.

For chocolate peanut butter pie. Oh wait, I am mad about that one.

For my blog readers, who never give up on me and leave wonderful, warm, encouraging comments.

For my MS board friends, who never give up on me and say rude things that make me laugh my ass off.

For Cathy, who never gives up on me. Period.

For Trinity and my friends there, especially Michael, Bill and Dell, who never give up on me.

Dr. Wonderful, for not giving up on me, for actually sending a hand written note when I missed a follow-up appointment for my shoulder.

Dr. H, for not giving up on me even though I question everything.

Dr. B. for always letting me talk and acting like he is completely sympathetic even though he probably thinks I am a total Fruit Loop. For not giving up on me after all these years.

Hmmmm, I am sensing a pattern here.

Have I mentioned chocolate peanut butter pie?

So where was I…oh, right, the shitty stuff. It seems churlish to list bad things, but I will anyway, because that is just the kind of ingrate I am. lol (Oh, another thankful for: Barb, because she loves it when I say ‘churlish’.)

Not thankful for:

For a person dying last month from an infection related to the medicine I take to treat MS.

You know what? That’s enough not to be thankful for.

I’ll bet they weren’t too thrilled about it themselves.

IN CONCLUSION

Many, many truly humble thanks to those of you who have kept coming back even when I didn’t.

If All of Us Got Together…

Every morning I shuffle out of my bedroom, into the kitchen and I feed my little dog and two cats. It is a ritual, sometimes comical, sometimes wearing. The cats cry and wind around my legs as though they haven’t eaten in decades. The dog shadows my every step, from the bedroom, to the kitchen, to the sink to fill the kettle, to the stove, to the cupboard, to the pet dishes, to contented munching. Then I have my tea and my breakfast.

Despite the ups and downs, well, actually, downs and downs, of my recent life, none of us, not me, not my children, not my animals, have ever been hungry.

But for people in close proximity to my home, perhaps even right next door, hunger is a very real fact of everyday life.

My church, Trinity Church in Asbury Park, has had a food pantry for more than thirteen years. It started when Asbury was a wasteland and the neighborhood surrounding the church was desperate and marginalized. The pantry continues to operate three days a week and has always prided itself on having no means testing or other such restrictions. There has never been a ‘deserving poor’ versus ‘undeserving poor’. Hungry was hungry.

The food that stocks our Pantry comes from several sources, from parish donations, from cash donations, but most importantly, from the Monmouth and Ocean Counties Foodbank. This post is a plea to help save that organization and, consequently, to feed our quietly suffering neighbors. I and over 100 other New Jersey bloggers are dedicating today to the “We Can’t Let This Bank Fail” campaign.

Our economy is facing the worst crisis since the Great Depression. More families everyday are finding one or both parents out of work. People are without jobs, and food, who never, ever imagined they could face such a predicament. Yet just when the need for food at the Foodbank is the greatest, the resources are at their lowest.



Kathleen DiChiara states it simply, but her one comment says it all: if all of us get together, we can keep the Foodbank supplies at needed levels.

There are so many ways to make a difference, some of them as effortless as tearing off one of those Check Out Hunger coupons at the supermarket.

The website for the Community Foodbank of New Jersey has an incredible amount of information about this silent crisis. Here are some ideas that you can act on:

• Start a food drive at your workplace, church or school.
• Engage your children, have them help you pick out and deliver non-perishables. You are raising responsible human beings and helping your neighbors at the same time.
• Donate money directly to the Foodbank. Even a little bit helps.
• Volunteer to help out at the Foodbank if your resources don’t stretch to donations. Again, it is a great way to help your children understand the value of giving back to our community.

If you can’t donate and you are unable to volunteer, pray for everyone involved: for our new administration, that they will guide us out of this crisis; for those who are struggling, that they will stay strong and not despair; for those who are serving, that they will find peace and gratification in helping their fellow New Jerseyans.

Here are some website resources, for you to help or seek help:

The Community Foodbank of New Jersey: www.njfoodbank.org

Trinity Church, Asbury Park: www.trinitynj.com

New Jersey Hunger Prevention Advisory Board: www.endhungernj.org

NJ Helps (free and private): www.njhelps.org

And here is the roster of incredibly generous and talented bloggers taking part today to raise awareness (brava to Debbie Smith of JerseyBites.com for pulling this together!!):

1) JerseyBites.com
2) RedBankGreen.com
3) Jersey Girl Cooks
4) Simply Sable
5) John and Lisa are eating in South Jersey
6) Padma's Kitchen
7) Chefdruck
8) Life Lightly Salted
9) My Italian Grandmother
10) Cook Appeal
11) Crotchety Old Man Yells at Cars
12) Mommy Vents
13) This Full House
14) Paper Bridges
15) Motherhood Avenue
16) The Kamienski Chronicles
17) Down the Shore with Jen
18) Fits and Giggles
19) House Hubbies Home Cooking
20) Nourish Ourselves
21) Partybluprints.com
22) Tommyeats.com
23) Off the broiler
24) Mrs. Mo’s New Jersey Baby
25) IamNotaChef.com
26) SimplyBeer.com
27) HistoryGeek.com
28) Savy Source Newark
29) Momlogic New Jersey
30) SurvivingNJ.com/blog
31) SurvivingNJ.blogspot.com
32) JerseyGirlGuide.com
33) Best of Roxy
34) Citizen Mom.net
35) Lynetteradio.com
36) Jersey Beat
37) Pop Vulture Phil
38) JerseySmarts.com
39) LongBeachIslandSummers.com
40) WildwoodSummers.com
41) Mike Halfacres Blog
42) Somerset08873
43) Family, Friends and Food
44) KateSpot.com
45) NewJerseyMomsBlog.com
46) JCRegister.com
47) New Jersey Real Estate Report
48) Riverviewobserver.com
49) More Monmouth Musings
50) Man of Infirmity
51) Another Delco Guy in South Jersey
52) SweetNicks.com
53) Average Noone
54) Cleary’s Notebook
55) Welcome to my Planet
56) The Center of New Jersey Life
57) Sharon’s Food Blog
58) Morristown, Chatham, Summit, and Madison NJ Real Estate
59) Midtown Direct Real Estate News
60) New Jersey Real Estate
61) BlowUpRadio.com
62) LazlosDen.com
63) The Ridgewood Blog
64) Book a Week with Jen
65) Banannie
66) Cartoongoddess.com
67) Matawan Advocate
68) Take Back the Kitchen
69) The Joy of Toast
70) Route 55
71) Montclair Kids.com
72) SaveJersey
73) Stompbox
74) Joe the Blogger
75) Environmental Republican
76) Stacey Snacks
77) Subversive Garden
78) New Jersey Pathfinder
79) Cooking With Friends Blog
80) Triple Venti
81) Read All About It
82) Rich Lee on Media
83) Likelihood of Success
84) Cape Cuisine
85) The Business At Hand
86) NewJerseyTaxRevolution
87) Figmentations
88) MiddletownMike
89) Caviar and Codfish
90) A Day in the Life
91) Mack’s Journey Through Life
92) Alice’s Restaurant
93) Tiger Hawk
94)Politics Patrol, The Bob Ingle Blog
95) The Food Chain
96) Henson’s Hell
97) Cranbury Conservative
98) Baristanet
99) New Jersey: Politics Unusual
100) Jersey Shore Blog
101) Plainfield Today
102) Beacon Bulletin
103) Journal Square Jersey City 07306

Evil. Again.

My dear friend Manju (a frequent commentator here and the writer of "Of Cabbages and Kings" blog, link to the right) is a resident of Mumbai, where today there has been yet another hideous, pointless theft of innocent lives. The terror continues for the hostages and the citizens of Mumbai.

Manju says she has been glued to the television all day. It is the middle of the night there. She is home and safe. For now. Her heartbroken and heartbreaking words: "In one day Mumbai seems to have gone from being a commercial centre to pure anarchy."

If it is your belief system, please pray for Manju and her family. For the residents of Mumbai and India. For all of us in this fragile world.

If it is not your belief, then please at least keep them in your thoughts and hearts.

Be safe Manju. We love you.

In The Depths

I unexpectedly slid into a wicked black hole a few weeks ago. Awfully dark and terribly deep. And silly me, there I wallowed, remembering hardly any of the tools I had on me to get back up.

Thank you to those of you who have reached in to help haul me out. I am more grateful than you can ever know.

In maritime/hydrographic use, depth means the vertical distance from the plane of the hydrographic datum to the bed of the sea, lake or river.

ha ha ha ha ha ha ha ha ha ha ha ha

What the heck am I depressed about?!?! At least I never, ever have to understand what that means.

I am working on some posts, so I will be back to what passes for normal for me soon. Fingers crossed. :)

God Bless America

For the first time in a very long time, I am proud to be an American.

Barack Obama, with his dignity, intelligence and stature, will now be the face of leadership for the United States. A face that represents so much of our rich, cross-cultural society. A face that doesn’t wear a vacuous smirk. A face that reflects grave comprehension of the pain and fear our citizens are experiencing in these terrible times. A face that had no advantages apart from brains and democracy to lead him to the White House.

John McCain is clearly a good and brave man. As Obama said last night, McCain has experienced horrors that none of could us imagine and few of us could endure unscathed. McCain was gracious and generous in his concession speech, markedly exhibiting distaste and disapproval when some of his audience contemptuously booed at the mention of their new president’s name. I believe him in his pledge that he will do everything in his power to help Obama as he leads our country.

I want to believe McCain, because working together is the only way we are going to be able to move forward. Working together, our elected officials can restore the good name and credibility of the United States. Together they can create an effective machine of peace and a model of honorable and responsible leadership.

As Helen Keller once said (in my Quotes to the right), “Alone we can do so little, together we can do so much.” Together, we chose Barack Obama.

God bless America.

VOTE!

Every vote counts!!! YOU count!!

Not voting means this could happen:

http://www.cnnbcvideo.com/?referred_by=13903505-dBa.nCx&combined=John%20Smith&first=John&name_id=6935230&last=Smith&id=&nid=J0xAn_iKheME37_1AusXTjY5MzUyMzA-

Would you want that to be you?!?!? I didn’t think so.

No matter who you vote for, just do it.

My Journey, Part 4

And where was all this fun leading? The second day I was in the hospital, Dr., we’ll call him Green, the neurologist, advised me I had something called Transverse Myelitis. I asked, what about the Multiple Sclerosis the ED doctor mentioned? “Oh,” he replied casually, “You are too old for Multiple Sclerosis. My oldest MS patient is 45.” Well that made me feel better, sort of, except for the “too old” part. I had never heard of Transverse Myelitis and immediately called my sister to look it up on the Internet. The results she read me were horrifying, with causes like AIDS and Lupus, and dire prognostications of permanent, crippling disability. It was also a symptom of MS, but I figured he had ruled that out for me.

Transverse Myelitis causes a demyelation of part of the spinal cord. The nerve coatings are destroyed by something, infection or inflammation, interrupting the proper flow of messages from nerve to nerve. The spinal cord damage would be permanent, with varying degrees of recovery, ranging from nearly complete to none. The symptoms were everything I had: tight banding sensation around the waist and chest, parasthesias, back pain, urinary dysfunction and Lhermitte’s sign, the electric shocks I had noticed months earlier when I flexed my neck. What it affected depended on where the damage was. Mine was on my cervical spine, so it impacted everything below my neck, including my heart rate and breathing. There was no cure, but it sometimes responded to steroid treatment and the symptoms could abate. The steroids were most likely to work when the TM was caused by MS.

While he continued trying to talk me into the Lumbar Puncture, Dr. Green asked me what rehabilitation hospital I wanted to be sent to when I was done in the acute care hospital. It was as though he were speaking in tongues. I could not go to a rehabilitation hospital, I wanted to scream, because I am going HOME! Home, walking, on my own two feet, from which I shall go back to work. Instead I just bleakly parroted, “Rehabilitation hospital?” Yes, he replied because Transverse Myelitis usually causes such significant disability… his voice seemed to retreat as I just heard blah, blah, blah, blah. I finally was able to focus as he said, so we’re going to start you on steroids. Now, steroids can cause significant sudden weight gain. “Great”, I said, “I always knew if I ever got sick it would be with something that would make me even fatter than I already am.” He paused for a second and I could see him thinking, “Oh, right, it’s this one, who thinks she’s funny.” He continued, “Anyway, we’ll get you started on that and see what happens.” Wonderful, I love to take powerful, dangerous drugs and see what happens. He left and I waited for my steroid pill.

About ten minutes later, the nurse came in with a bag of Solumedrol and started to hang it. “I didn’t realize Dr. Green meant IV steroids.” “Well that’s what he ordered.” Ok, no problem, I thought, I just wish he had told me. A few minutes later, the nurse came back in and said, “Here is your Prevacid, Mrs. Cooper.” “But I don’t take Prevacid.” “Oh, you’ll need it with the Solumedrol.” Ok, no big deal, I just wish he had told me. An hour later, the nurse came back in and said I have to check your blood sugar, it can get a little high with the steroids. Boink, he stuck my finger and wordlessly left the room. Three minutes later, he was back with a syringe of insulin. “Are you kidding me!?!” I blurted, “Why didn’t Dr. Green tell me any of this?” I simply received a nasty look and no answer. My blood sugar went so high I would continue to need insulin 4 times a day for 3 weeks.

The next day, when I lost it before the lumbar puncture and Dr. Green came to my room to talk me into it, I lit into him. He sat in my bedside chair and coolly crossed his legs as I ranted. “One sentence, that’s all it would have taken, one sentence: ‘Mrs. Cooper we are going to start you on IV steroids because that works the best; it might bother your stomach so I’m going to order Prevacid and it sometimes can cause your blood sugar to go up, so you might need insulin.’ How hard would that have been? Now I feel as though I am being bullied into this test and I have no confidence in anything you are telling me.” His gang of residents looked nervous, shifting back and forth on their feet, waiting for the outcome of what must have been, for them, the fight of the century. A lowly patient challenging their high and exalted mentor? Who would win? Would he maintain his status? Would they fix me by writing “Freaking Maniac” in my chart so it could haunt me forever? By this time the nursing supervisors were all in the room too. Everyone held their breath. It was neurological High Noon.

Dr. Green casually adjusted the beautifully tailored trousers on his crossed leg, subtly reminding me that I was the one in bed in my p.j.’s, with a hep-lock in my arm and barely able to walk. He went into a very patient and condescending explanation of why IV Solumedrol was better than oral and what he was looking for with the spinal tap, most of which I really already knew and could have remembered if I wasn’t demented with fear. Completely deflated, I murmured, well I just wish you had told me all this yesterday. Our audience simultaneously exhaled in relief. Order would be maintained in the hospital. He withdrew triumphantly, another nut job successfully conquered. I wouldn’t be surprised if he scratched a little notch in his reflex hammer. I obediently gobbled up my Valium and was taken to be punctured.

THE OTHER SHOE DROPS

I spent five days total in the hospital and would have been there longer if I hadn’t talked my regular doctor into letting me have the last two infusions of Solumedrol at home. He was very unhappy and said he had never let anyone go home with IV steroids and four times a day insulin coverage, but, he said, looking at me dubiously, he had confidence in my clinical skills.

Dr. Green came in the day of my discharge to tell me that I did not seem to have an infectious process causing the TM and it was a very good sign that I was responding so quickly to the Solumedrol. I was now able to take faltering steps and had regained some strength in my legs. I was weak and still numb, but I was going home! I went back to work four days later, sooner than I should have, but with no sick time I couldn’t afford to lose any more salary. After a few harrowing days, I started to feel almost normal, confident that this was a one-time deal, a freak occurrence. Then I had my follow-up visit with Dr. Green and the world I was in that had already been knocked off kilter was turned completely upside down.

He outlined my symptoms: Transverse Myelitis, which caused a demylenated lesion on my spinal cord, old MS plaques on my spinal cord, the Lhermitte’s sign, positive lumbar puncture, a suspicious lesion on my brain, episodes of dizziness, numbness and oh, yes, I forgot to mention, frequent falls. Speaking slowly and deliberately, he said these are all things that appear to be very strong indicators of MS. “The MS I am too old to have?” “Yes.”

There is no one test for Multiple Sclerosis. It is a diagnosis of inclusion and exclusion. They exclude anything that could be causing the symptoms, like infections or injuries, and include anything else that could cause the symptoms, such as lesions on the brain and spinal cord, positive spinal taps and medical history. All the things I had. The last pieces in the puzzle are confirming tests that show a lapse of time during which new lesions develop. That January, I seemed to be free of any progression. But in April of 2006 I was bowled over and back in the hospital with a relapse. There were new lesions. It was time to face the reality that my life had changed forever.

In an attempt to lengthen the time between inevitable relapses, for months I gave myself a shot every night. The shot itself was nothing. But then I would feel the medication, which is caustic and created a brutal reaction. It would burn for more than an hour, like dozens of wasps stinging over and over, leaving me with sore, itchy, egg-sized lumps at every injection site that lasted for days. Even with the medicine, I kept getting sick. It wasn’t working. Now I receive a monthly IV infusion of another medication that causes me to be immunocompromised and has the potential to cause a rare, fatal brain infection. It is the drug of last resort for MS patients because it is so dangerous. Such fun.

The reminders of the damage to my spinal cord and brain, while less intense now after time and steroids have done their job, nudge me daily with relentless pokes. My hands, legs and feet twitch. I have muscle spasms that wake me up and cause my limbs to have a life of their own. The pain from damaged nerves can be merciless. Balance is a foreign concept. However, using a cane gives me a gnome-like appearance (see aforementioned short and fat references) and my vanity resists the device. Unfortunately, my body does not resist gravity, making that appendage an attractive alternative to potentially bashing my face on the ground.

I have to frequently “rest”, like the heroine in a Victorian novel. Numbness and debility are my reward for overdoing it. But overdoing it was a lifestyle for me. I am no longer capable of doing it all and I still cannot accept that. I am devastated.

So now I stumble forward, almost literally, waiting for the unknowable. I have worked hard to create a life of order and harmony for myself and my children. I have been tenaciously autonomous. But the illness I have, this disease I face, obliterates these things. There is no predicting its course, there is no pattern. It is all the things I have most feared through my life and it is what I have fought hardest against, uncontrollable and disorganized. There is almost no illness that would be a better fit for my deepest dread, something slow, incurable and complicated, with the potential of forever robbing me of independence and dignity.

My friends tell me if anyone can handle this, it would be me.

Time will tell.