Darkside

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JUNE 19, 2009 9:37AM

Divorceland on Hold: The MS Diagnosis

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Sometimes life throws you curve balls.

A few weeks ago, I went on a business trip for work.  The chance for true relaxation, I thought.  Spent some time with a friend out to dinner, got a couple great hugs, came back to a nice hotel room and rested.

I actually felt free.  Free of the drama that's plagued my life since December and before, able to float and just breathe.  It was so nice.

For some reason, though...I got really tired that night and went to sleep early.

When I woke up, things were...different.  My eyes seemed swollen, and part of my vision, well, it wasn't there.  It was like a crescent at the bottom of my eyes had just disappeared.

I'm not normally a doctor type, but I immediately went to the optometrist nearby, who gave me steroid drops.  She said it just looked like an inflammation.

I started my 5 hour drive for home that morning, being extra careful because of my vision. 

About two hours in, the feeling in my right hand went to pins and needles.  Then pain, then numbness.  Then back to pins and needles.  I began to take more rest breaks.  A pinched nerve, I figured.   Latent stress, maybe.

Got home and rested that night....woke up and called my doctor.  Incompetent that she is, she had me squeeze a ball over the phone, said "you didn't have a stroke, my office is closed until Tuesday, come see me then if you're still having symptoms", and that was that.

On Monday, I went to the urgent care.  The gentleman there immediately sent me to the neurologist.  Between Monday and Wednesday I had two long MRI's with dye, examinations, eye exams, and other tests.

I have multiple sclerosis.  About 95% sure.  I have five lesions on my brain, which pattern fits the MS diagnosis and also explains my symptoms.

I spent a week on IV and oral steroids.  My vision is returning and will become clear.  I'm waiting for the numbness and pins and needles to go away now, along with hopefully the fatigue to fade.

My hand for now either is numb, burning or freezing.  It won't shut up.  Part of my face is numb off and on, my foot as well.  Even part of my tongue.  It's all intermittent while the nerves heal up, they say.

I begin injections of Copaxone in the next couple weeks; the research is good that between this medicine and alternative medicine, I will make a complete recovery.  Time will tell.

In the meantime, my former stbx has rallied around me.  She is being supportive and we've agreed to table the divorce/separation until this crisis is handled.  "You won't be alone", shes said.

Right now, I'm very grateful.

So that's the synopsis...we'll see what happens next.

 

Thanks for listening...

 

ds

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I'm not sure what to say. Good luck to you and I am glad that you are not alone in this.
Thanks, Harp. I'm glad too. I guess now I need to figure out what this all means, you know?

In the end, it'll all be ok.
You know I know this life. Call me anytime if you want to talk. Or, if you want me to tell you a joke. I know a few.

xo
Thanks, waking :) I will definitely do that.

xo
I'm glad you're getting relief from your symptoms. And it sounds like you've found some peace and I'm happy for that. Good luck and be well, friend.
You have been on some roller coaster ride. I'm glad that your wife is stepping up to help. Sometimes illness brings people closer and sometimes it pushes them further apart. I wish you the best through the treatment!
I know from personal experience how health problems impact the divorce process. We haven't tabled our plans, but they are on an extended hold while we wait for the house to sell. Money from the house is the only way that she can afford health insurance and finishing her college after the divorce. We both hate the relationship limbo that we are in and wish it would just get over with.

I think we will be really good friends for the rest of our lives but it feels like we can't get on with that until the divorce is finalized--which will be a while.

My thoughts go out to you with this added challenge. Take care of yourself.
All the good work you've done to end your marriage amicably is coming back around to you because it sounds like you have a true friend in your STBX. Best wishes for a full recovery.
Darkside,

See? It's moments like THIS that convince me you've been absolutely, positively right this entire time, and that those who've advised you to be less generous, less understanding, less patient (harsher, firmer, crueler, more vindictive) with the stbx have been WRONG.

I love that you and stbx are committed to treating each other with loving kindness, even in the middle of all this pain.

So, your reward is, you won't be alone. That's huge.

You may not be "married" to her at some point in the future, but you'll never be alone.

You've earned this support.

Hugs to you and to her and to the kids.
Aw sweetie.....Fuck.

Glad you have support. Scare me to death. I was once incorrectly diagnosed with MS. I am VERY glad to know that treatment is so much better now.

Much love to you.
Oh darkside, I'm so sorry this has happened to you, but so glad to hear your prognosis is good.

I am so grateful your stbx is giving you such outstanding support, and I send peace, hugs and healing to you and yours.
Oh, dear--I'm SO sorry to hear about this. But I understand from a good friend who has MS that the recent research is showing great promise to make this disease not only easier to diagnose but able to provide better treatment. And I know you and your stbx will handle this detour with the same care and concern for each other that you've shown up to now. My thoughts and prayers are with you and your family. Thank you for sharing this with us. We're here. Rated. D
Hi folks -

dharma, thanks. Good wishes are most welcome :)

Roger, thanks much. We'll see what direction this goes, right?

Charles, thanks for sharing. Right now everything is in such disarray, the only prudent thing to do is wait.

Kellylark, thanks much :)

jane, (((you))), thanks :)

VR, thanks for the support, and hugs back to you as well :) Guess I might know a thing or two, hm? ;)

Persephone, yeah, fuck is about right. It's going to get better, though. Much love back :)

AshKW, thanks for the thoughts and support... :)

Yarn Over - thanks so much for the support, and yes, I'm hoping eventually to sail through this...and glad my stbx is being the supportive partner I need right now...

Thanks all!!!

ds
ds,

I am sad for you in this period. However, your concious choice in kindness to the stbx always helps. Even in this darkside moment. Glad for your support now. Be well.

Annie
Hi Annie -

Thanks much for the kind words...going to keep on it :)

ds
I'm glad you're not alone. I don't know anything about MS, will you do a post on what you've learned about it, and bring us up to speed on the disease?
The good news is that you were diagnosed when you were and it is being taken care of. I have a friend that has had this disease for years and hardly anyone knows. She somehow keeps it under control. I'm happy for you that the divorce was tabled for now. Less stress is good. I wish you the best of luck and send my prayers.
I know nothing about MS, but I know what it's like to try to deal with separation/divorce while other huge crises are happening. I'm glad you will have someone there for you.
Sending healing thoughts your way. I'm so sorry you're going through this.
wow, hi folks.

h-Julie - I will post as soon as I'm up to it, for sure. It's interesting.

sciencechick - yeah, right? well put ;)

Hi Karin - I'll collect that hug someday, promise. Left field is soooo apt. I will recover, yes :) More to come...xoxo

Hi luluandphobe - Thanks for the kind words, and yes, definitely it sucks AND thank heavens for new treatments...and for the wife for hanging in.

Hi MAWBlogging - Thank you...and yes, I'm grateful for the tabling...I need the help for now!

Siobhan, thanks for the thought and the comment.

JustJuli, I appreciate the healing thoughts and the sympathy, both :) Thank you!


Thanks all -

ds
Not much to add, except that I also think it would be great to have a post or series of posts about MS. It's one of those diseases that, because it comes and goes and often has no visible symptoms, people tend to pooh-pooh it. We had a family friend with it, who had a handicapped placard for his car, and people used to give him dirty looks because he looked like "nothing was wrong with him". What they didn't realize was this:

"My hand for now either is numb, burning or freezing. It won't shut up. Part of my face is numb off and on, my foot as well. Even part of my tongue. "

How hard it must be to walk when you're feeling like that but you have to go to the grocery store. I think if more people could understand this, they'd be more understanding.
Sorry to hear about the health scare, Darkside. Hope your flareup clears up soon and your life gets back to a closer approximation of normal, whatever that is.
Hi catnmus -

You raise good points. I will endeavor to write some posts about MS as I can.

One example right now...my right hand is burning like crazy, so I can't really type much. The fingers respond, but each keystroke aches.


I will continue as I can...thanks much,

ds
Thanks, Denise...I appreciate the thoughts. :)
I am sorry to hear that you are going through this! After all the months you have been through with such gut wrenching honest and pain, and now this. I'm so happy that you are getting support and you have it here. And not to be glib, but there are many wonderful therapies out there, both western medicine and others that can help keep this disease at bay. I have several friends and clients who were diagnosed years ago and you would never know it. All the best to you!
I lost about half my vision in my left eye from optic neuritis, which is a symptom of MS in about 50% of cases. It hurt to move my eye around in its socket. I had the brain MRI, and lesions were not found, although that sometimes means only that it has not yet progressed very far yet.

There are many symptoms of MS that masquerade as something else, and there are other symptoms that masquerade as MS but are something else. I counted up all the possible MS symptoms and told a doctor, and I was certain I had it. It can take years to get a diagnosis.

My vision has been restored and then optic neuritis attacked again, this time worse than before.

I did some more reading and discovered that optic neuritis is also caused by elevated blood pressure. I had a drinking problem some years back, and visits to the ER confirmed that my blood pressure was way out of control.

My vision has been restored again and I haven't had another attack since I quit drinking. So I wait and see, and hope for the best. I'm just a tad too old to be developing first symptoms now, so I'm remaining positive but always on the lookout for new symptoms. It was not just my eye that concerned me. I had had some incontinence, and a really bad spell of bipolar disorder which is now gone. Bipolar disorder doesn't just go away, but it did. I have numbness and tingling in my arms and hands.

It is a scary place to be, but with good medical care (do we have that in this country?), you can live well for a long, long time. I found a few message boards on the web for people who have or think they have MS, and there are LOTS of good people out there who are willing and able to help you with your concerns.

Thanks for sharing your story. Chin up! Sometimes it seems so shitty not to be able to forfeit your cards and ask for a redeal, but MS is not a death sentence, and most people live a full life with it.
Ohhh, dark, many warm hugs to you. and it's so good to know you're getting the support you need.

let me know when you want chocolate to go with those hugs, k?

you know where to find me.

xo
Hi maryt - yes, I concur...thanks for the good wishes, and I have begun already my western and non-western style healing...

Leslie, thanks for your story and I hope for your continued health :)
hey ms bees :)

I'll take that chocolate ANYTIME, hon...with many huggles, please...

xoxo
ds
My god. I'm so sorry. At least your ex cares enough about you to be there for you.
dark,
My heart and prayers are with you. Life is just so fragile, isn't it?
I'm glad you will have support through this. I am sorry for your illness. I am glad to hear you will recover. Take care of you.
Darkside, my sister lost her vision like this twice fifteen years ago. After the second incidence they called it MS - the second time being the key (multiple episodes) She has been on their medicine ever since with very few other symptoms other than some numbness in her fingers a year or so ago. The doctor calls her a poster child for the meds. I hope you respond as well to the meds. White Light and Good Fortune.
All best wishes for a speedy and complete recovery.
I wanted to write some words of encouragement. In my 50s now, I traversed divorce and the MS diagnosis about 10 years ago. In fact, the MS diagnosis was what finally made me understand that my life with my ex-husband was unbearable. That aside, I have found MS to be a friend to me. Odd, yes, I know. Coping with it, coping well, required that I get my life in order. And I did. You will be ok; the shock of it will pass and you will learn to live with it, and for the great majority of us, most days are very good. After the processing of the diagnosis, the making of decisions, the adjustments and changes, the disease, most days, recedes into the background and you are yourself again. You are yourself with MS, but it does not dominate the foreground of your life. Medications are wonderful. I have done extraordinarily well on Copaxone for almost 7 years. More treatments are in the pike, nearly to burst on the scene. I promise that you will be fine with the disease, and you also will negotiate the divorce at some point, to find yourself eventually renewed and ready for more love and adventure with another person. You will make it.

All the best to you. You are a person of courage; I can tell this from your writings.

Deb

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Sorry to learn of your diagnosis, but at least you know what is wrong and you can deal with it. I have had a few friends with MS and it is very true that MS is not the disease it was a few decades ago. There have been huge strides made in medical research, and for many this has alleviated their symptoms to such a degree that if you did not know, you would never guess that the person has MS.

I hope the copaxone works as well for you as it has for so many others.

It is a good thing not to be alone. I'm glad to see that she will stand by you. Especially while you are adjusting to this new reality, it's so important to have a hand to hold.
As one diagnosed with MS five years ago (I call MS the 'Guest') I was much moved by your post. I know these symptoms plus incontinence of urine and shit and incapacitated re walking. Not to mention driven crazy with steroid therapy. And so might I call you "sister"? I am now I believe free of MS but it has been a fierce and ultimately benevolent passage. I m trained in two medical modalities -- an RN of over 20 years -- and initiated into tribal medicine of Bantu people in Zimbabwe. In Africa MS is a sacred illness that leads one into a deeper understanding of the practice of medicine. A couple of years ago I went to the forest and spent a couple of months alone offering the Guest over to the Source in the traditional way. My essay, Multiple Sclerosis, Sacred Illness and Poisoned of a God, is posted on my website www.gatheringin.com. And in the book section a couple of chapbooks are posted in their entirety on MS and sacred illness. For black black humor The Divine Comedy of Sacred Illness. I d been alone for six weeks and asked what was the prayer that invited MS into my life. Writing about it had me laughing and laughing at 3 am. Perverse as it sounds it seemed to be a pivotal moment of offering the Guest over.
Forgive me I am saying here more than can be said but the bottom line is bless you and your husband. Truly. It is the most radical change of consciousness when one faces the vulnerability of the flesh and the vulnerability of one that you love, Blessings upon blessings. Should you want to call don't hesitate (310)455-0301
Hi folks -

sirenita, thank you. I'm grateful for small things right now.

grif, you got it. thanks much :)


Liz, thank you, and I shall definitely take care of myself...

poetTESS, I'm glad your sister has recovered so well! Hoping I will also be a poster child...

Lea, thank you :)

unusuallycoolweather, thank you so much for your words. There is much truth in what you're saying that resonates for me. I can't wait to find out what's next after I "recover", and get moving on!

Ablonde, good points. Hopefully people will never know I have it...eventually :)

Michael, I would be more a "brother", being male ;) Thank you for your story, and I look forward to reading your work.

Thanks all-

ds
So happy for you. Crazy to say that, crazy for you to hear probably, given your health challenges right now. You can be happy with whomever you *choose* to be happy with. We don't have to have misery, or power struggle, shutting out or shouting down. We can choose warmth and eye contact and thinking only of the other and it's very, very cool. Now you guys get to get to the third and final stage of love: the real thing.

What's an stbx?
I'm very sorry. I can sympathize. I was diagnosed with Parkinson's disease last year. It's a struggle, but life goes on, often happily. Best to you. My prayers are with you.
Dear ds
OOOps! You most certainly not sister. Forgive my inattentive extensions of sisterly solidarity.
Reading your missives about the efforts to lovingly separate from your wife thus the context of the MS diagnosis
And yes holding your baby child. This is a life of human dimensions and truly what else could any of us want?
I separated from my first wife after 7 years and we raised our daughter tenderly between two households. Indeed my ex and I we were getting along so well I once suggested to Nicole (now 30) that we all live together and she refused! She liked being away from dad/ mom half the week! Again - life of human dimensions. MS has brought that to the fore. Diagnosed at age 47 I was accustomed to the oblivious vigor of a young man and now had to recognize how vulnerable and damned mortal we all are. This has been one of the many gifts of MS.
Extend my blessings to you wife, ds. And love up yr kids this fathers day.
Michael
I was so sorry to read about your MS diagnosis, and hope the following information may be of help to you.

I am in the process of writing a book on the topic of lifesaving treatments most doctors don't know about (or may not tell you about, even if they do know about them). One of the treatments I am writing about is called Low Dose Naltrexone (LDN), and many MS patients have had outstanding results with it. There is an article on my website that tells about LDN at http://tinyurl.com/cspj99 . And there are two websites I'd highly recommend that have lots of excellent information about it. They are www.lowdosenaltrexone.org and www.ldners.org.

I hope this helps. Good luck to you!

Julia Schopick
www.HonestMedicine.com
After being accidentally poisoned six years ago I too developed MS. The vision will come and go, usually in the less dominate eye. Whereas my feet were only occasionally numb before, they are constantly numb with a strange kind of pins and needles pain. The left hand (thank God it wasn't my right one) is numb on an off too. My taste, smell and other senses have all been affected by MS. I don't take the steroids...don't have the money or insurance to pay for them. I eat lots of seaweed, peppers, greens, olive oil, coral calcium and I drink sea salt in my water. What I can tell you is the alternative medicine works because my friends who have MS are all much worse than I am and I had it first. The secret is the Sea Vegg capsules and the Coral Calcium.

Best of luck, don't allow it to steal your joy.
Dmeister--

As I was divorcing and moving out of our home, I suffered a 9-ft fall that resulted in 2 total-knee replacements and 2 ankle reconstructions. The whole procedure took 5 yrs.

During that time I also had to cope w/the recovery process, as well as caring for my ailing mother and fighting w/siblings who were robbing her blind. The contested guardianship is something I'm still recovering from.

My point is, these things, like yours, are very often tests of faith. Perhaps if you look at your diagnosis in that context, you may be better able to overcome the plethora of emotions that must be tearing at you right now.

For whatever reason, it (MS) happened to you. Your treatment is set, and STBX will stand by you. That should mitigate any bitterness you now feel.

This too shall pass, and once again you'll own your life again. Know that you do have love in your life--all of us here care, as you can read in these posts--and you'll press ahead.
i'm always so sunny-side-up. fuck. this isn;t the case here now is it? well, here it is: you've outlined, without meaning to or wanting to, the "it could be worse" and are here to tell us about it. divorce sucks; this sucks more? it's still day by day. i expect i'll learn a lot from you ...
I am so very sorry. Doesn't it seem sometimes that life throws all its shit at you at one time? My life has been like that lately, too. I hope you can get this under control and resume your life and head into the future.
Ack, catch up comment!

Inkie, thanks for pointing out the choice. STBX = soon to be ex.

Steve, thanks and I hope your parkinson's arrests and remits.

Michael, no worries. Blessings to you as well.

Julia, thanks for the lead, I'll do some research.

TS, my joy will rise to the top. Keep fighting the good fight.

elsma, OUCH! Tests of faith indeed. I shall press on.

cindy, yeah, kind of poached right now. we'll get back to the separating...but it's tabled for now. still, could be SOOO much worse.

Lisa, thank you. I hope your life improves too :) Mine is definitely going to get better..

thanks all for commenting,

ds
I am extremely late on catching up but I hope your procedures have been going well. I am very sorry to hear this but I am very glad it was detected and that you're getting care.