RSD/CRPS - What Is It?

Here is a superficial explanation of my daughter's disease, RSD or CRPS.  The video below this one describes a little of what having RSD actually feels like.  It does not express it as severly as it actually is.  I was Skyping with my daughter (who, G-d willing I will see in two and a half weeks), when she suddenly had a flare-up.  I can't describe what happened--how her face suddenly contorted as she tried to cope with the pain coursing through her leg.  And I was watching her, sobbing, 7,000 miles away, incapable of doing anything. 





Thank G-d her brother was there.  He tried to help her, bringing her a cool compress for her forehead, and standing by her side, speaking soothingly to her.  She was in such pain, she was not aware that her mother was crying...I need strength to be able to help her, and appear strong.  How will I do that?

Making Emergency Visit to Israel...

I am making an emergency visit to Israel to tend to my daughter, who has severe RSDS/CRPS (Reflex Sympathetic Dystrophy, sometimes known as Chronic Regional Pain Syndrome).  My Rabbi is trying to raise money to help fund the trip, as it is the worst possible time for us to do this: my husband is still looking for work while waiting to hear about his disability rating appeal from the VA, and I will be losing two months salary by leaving.  But something has to be done, as my sons are stressed to the gills, taking the part of their parents--in loco parentis--so it's time this parent came to care for her daughter.

I am asking for a chesed--a kindness--from anyone who can do this--please help support this trip by donating to my PayPal account on my blog.  Small amounts help too.  I am also looking for a free place to stay very near my son (close walking distance), where his sister is staying. Just a room with access to a bathroom, as my plan is to leave mornings and go to my son's, and just return to the room to sleep. All meals I will be having at my son's place.

This is my brave, brave daughter--known as Rambo on this blog--who was tough in everything she ever did: in attending,  for her first year, a high school here in the States with rampant anti-semitism, where she was one of the few Jews in the entire school, and where she sometimes had to 'run a gauntlet' of girls (street kids--future criminals) who were just looking to pick a fight with her--and she blew them away with her toughness (she used to go to school with a little Tehillim book in her jeans pocket); in leaving her parents to make Aliyah at 15, all alone, through the Naaleh program; in going to high school in Israel with minimal Hebrew, without any academic or emotional assistance from anybody; in enlisting, after graduating high school, in a tough combat unit in the IDF (by choice) and making commander and going out on missions; in trying out for and succeeding in some of the toughest training around to be a security guard after she was discharged from active duty--the only woman to pass this particular course--but who is not so tough now, and desperately needs my help. 

I don't know why this has happened. I don't know why she had to be hit by a car, and why she developed this awful disease.  I don't understand the ways of Hashem.  But there must be a reason and meaning to this terrible occurrence, which perhaps is too soon to see.  Or perhaps there is a much bigger picture, of which this is just a piece of the puzzle.

Whatever the reasons, I have to forfeit my job, my savings for my future retirement, because my daughter needs me, now.  No matter the cost, I am going to help her.

Maybe I'll see you there, in the Holy Land--Eretz HaKodesh.

Finally Unloading...

I had started to write a post from my smartphone while sitting outside of Brakes Plus, waiting for them to evaluate the problems with my car's AC, and/or at least, to get an infusion of Freon for as long as it lasts, until it leaks out again--which it will; because there is a leak, and the AC needs major repairs, totaling hundreds of dollars.

But I couldn't complete that post, my heart was just not in it.  I have something much more important which has been weighing on my mind for months now, and which I wasn't going to write about but I've now changed my mind.  I guess I just need to talk about it and maybe release some of my stress and tension and worry.

On February 22nd my youngest daughter, Rambo, while on the job as a security guard for Modi'in Ezrachi was walking across the lane at her checkpoint, when a car which had just been checked by another guard accelerated and hit her.  The driver was looking down, putting away his license which had just been returned to him by the security guard who checked him, while his foot was on the accelerator.  There's an Israeli driver for you.

Doctors couldn't at first figure out what was wrong, because her injuries did not seem to warrant her complaints of constant severe pain, and they at first did not believe her complaints that her leg felt 'frozen' and turned bright purple, from her toes to her thigh.  Within a month she was diagnosed with RSD/CRPS, a chronic neurological disease, not fully understood, which can be caused by trauma to an area of the body (hand, foot, etc.) which may in itself not be severe, but which results in pain disproportionate to the (possible) inciting event, and also other symptoms such as impairment of mobility, abnormal skin blood flow, etc.  In general, abnormal function of the sympathetic nervous system.

Often medical personnel cannot figure out what the problem is: the patient complains of severe temperature changes in the affected limb.  In our daughter's case, her leg turned purple and felt icy cold, but not during her initial visits with the orthopedists.  They saw nothing, and didn't know why she was complaining.  After various tests they recommended physical therapy, and she was blessed with a physical therapist who actually listened to her and referred her to the chief neurologist at the hospital.  I guess I should say, 'thank goodness' that her leg turned purple and icy cold while she was seeing him, because he was the first medical professional who saw the symptoms she was complaining about, and he was the doctor who diagnosed her with RSD/CRPS.
I am too exhausted emotionally to write much more.  At first, she was on crutches, but later, she was unable to even use them and is now mainly prone, or in a wheel chair.  After being referred to a pain clinic in Jerusalem where she has been for a week already, she just underwent a nerve block today, which we hope is helping somewhat.  Too early to know the outcome.

She cannot stay by herself--is giving up her little apartment in Baka (which she loved), and will need to sell and/or store her furniture.  She has spent the last 2 months with her eldest brother, who has an eleven-month-old baby and his wife is pregnant with their second (b'sha'ah tovah), and now, after she leaves the clinic--we don't know what the arrangements will be, whether she can stay there for weekly treatments or will need to be on an outpatient basis--she will have to live with her younger-older brother, who has a small apartment, a wife and two toddlers, and is between jobs.

And here we are, her parents--unable to be there to help her, to find her a ground-floor apartment or an apartment in a building with an elevator, and stay with her for what would probably be months, at least--until we know what the treatments are doing and what the prognosis is.  At this point, the disease is not known as 'curable,' although it sometimes goes into remission.

This is a tremendous burden on her brothers, who are the only ones there from the immediate family to help--and they have families of their own who need their attention, and this is a tremendous stress.

My D. H. is appealing his VA disability rating, he is still looking for work although has started receiving social security, and I have full-time work which salary is being put away for our return to Israel--which cannot be for at least a year or two.

Truth is, I don't feel any better having written this.  The problem is still there--and I don't have any solutions, and can't even fly to Israel to be with my daughter for a month or two: can't afford the airfare, can't leave myself without a salary and job for even a month, and have no place to stay with her.

Am open to any ideas.  Don't have the heshek to blog, but at least I finally let it spill out in this post.