Post Traumatic Stress Disease... the gift that keeps on giving

Recently I've joined a few on-line support groups for people who survived NF. Sometimes I forget that there are going to be things specific to the fact of having been through this particular nasty disease and it's ramifications. One such ramification that nearly everyone relates to and talks about is the aspect of PTSD afterward.

This is what is going on with me...
I'm having a recurrence of the PTSD. It took me a long time to identify it, and there are other things in the mixture that are affecting what is happening with me these days, but that is a big factor. I believe it is stemming from being with my friend Sabrina while she was dying. There are many gory details that I don't need to, or want to get into here, but what I thought I could handle went into hiding in my subconscious for a few months and has been eating away at my emotional state, my sleeping, and at this point just about every aspect of my living. My PTSD was so bad after I had NF, a year later (2008) I was hospitalized for three weeks in the psychiatric hospital here in Be'er Sheva.

PTSD is insidious. You don't know that it can be responsible for depression and sleep problems, among other things. My depression has been getting so bad lately, I cannot enjoy anything. I mean, I can enjoy things on a surface level, really enjoy being with friends and in social situations, but darkness lurks for me when I try to go to sleep. I thought it was my sleeping pills not working anymore, but now I realize it is the PTSD. I haven't had it this bad for a long time. And, it took a few months, since Sabrina passed away, to manifest so strongly so that I could clearly see it. Same thing happened after I had NF; at first I even went back to work with birthing couples, and even playing horn in the orchestra for a few months. Then, at about the six month point of after NF (physical wounds still not even healed completely) I had a break down of sorts, and checked myself into the psychiatric hospital at my psychiatrist's advice. That was my introduction to psychotropic medicines and sleeping pills.

I had no idea that my PTSD could ever get that strong again.

Well, it can.

Also, problematic here is the fact that my medicines have changed drastically over the past few years, and I haven't had any psychiatrist at all in my life going over it, giving input. I've kind of used my neurologist for that because of needing to deal with the migraine problem, but one hand did not speak to the other. I went off the Fentanyl, went off Lamictal (which was specifically for PTSD), and am now on a large dose of Depilept for the migraines, and my GP raised my Cymbalta. All of this with no input from a psychiatrist. So, it's time for that.

I plan to go back to the one who I last saw at least three or four years ago, because she is the last one who knew my case. Robert tried to call her this morning, but she wasn't in today. It is urgent. We will try to get in to her tomorrow. If not, maybe they can give me someone else. She specializes in PTSD, though. We are even thinking about the possibility of another hospitalization, but are very much hoping on getting a hold of this as out-patient. The depression and sorrow are sucking away my life, I can no longer cover it up. I'll get help.

I know that Hashem (God) is always there for me, stretching His hand out to catch me when I am falling. The challenge is to stretch mine out to grab on and feel my will and life-force again. It's in me, but quite buried. Buried under hospital nightmares of the past... which are still quite present for me.

Rosh Hashana 5777. About shofar, gratitude, and optimism.

It's that time of year! The high holidays are upon us. We just ended Rosh Hashana here in the holy land, and it was lovely.

The calling of the shofar was loud and clear: It broke into my praying saying to me "wake up", it said "time to cry", it said "break", it said "come together with tremendous strength", it said "LISTEN", it told me that we need to come together as a nation. The shofar blows are sometimes long, sometimes in long-ish broken sets, sometimes in short broken sets, and a few very long. God has many, many ways of getting our attention. In these days of ADD and whatnot, we need all the help we can get!!

I prayed a lot for life itself. I prayed for my husband's life, for my children's lives, and for my father. I entertained memories of my mother, daydreaming in my seat there in shul. I remembered the smell of her perfume when she got dressed up for synagogue on the holidays.

I prayed for the life of my friend who is fighting tremendous physical ailments, and is very sick. I prayed for her daughter. I prayed for my own strength of body and soul to be there for both of them.

Lots of the time I was just talking to Gd. I was in dialogue.
The shofar was at once a huge call for our nation to be strong in unity, and also it sometimes sounded like Gd crying for all that we are dealing with down here.

I feel that us Kleins are on a good path as the year starts out. The children are all in good places physically and emotionally.

I am optimistic that my personal path to health is also getting easier, with the help of Gd.
A little rundown of my varying situations would go like this:

• Steadily going off Lamictal. It has been very challenging at times (which is why I have written less recently, the withdrawal from this medicine is really nasty), but I'm getting there. I was on 150 mg's, now down to 10... but many websites say the last 10 are the hardest. I've been on it for nine years.
• lymph edema is unfortunately back with a vengeance. The pressure garment is no longer helpful. It's very sore and swollen where the lymph nodes were removed because of NF. I have to go back to lymphatic draining sessions. On the one hand, I know that the treatments will help, I've done them on and off over the years since I've had NF. On the other hand, I am not looking forward to them because it eats so much time from my day. Going to the physical therapy building, finding parking, a 50-minute session, driving home again (or to wherever), it is a two hour affair when all is said and done. Yet another reason I cannot work.
• headaches still about twice a week, but can be treated with Excedrin or Advil and it usually works.
• throat click problem still there and still very bothersome, I just don't write about it because it looks like there may be nothing that can be done about it. (this is the complication after having last year's surgery, the intubation tube caused a dislocation of something minuscule in my throat and I get a click in my head, which is palpable to anyone who puts their finger there, each and every swallow). I went to a specialist a few weeks ago, and he suggest another specialist who has a months-long appointment list. I took an appointment with specialist #2, but it's in March. Whatever. It's a big annoyance, but since it's not dangerous, and doesn't cause pain, it doesn't get priority.
• hips functioning well, very minimal pain usually.
• I need a knee MRI, praying for no PVNS.
• tingling in right leg, and numbness in right foot when I wake up in the morning. Have no idea of anything about what is causing it. I was hoping the surgery last year would take away the tingling, but it didn't.
• Gapey hasn't been doing so well. That is the wound/skin graft/mesh site where I had NF. I have had a consistent pain nearby (above the site, in my upper belly), and I am thinking it may be a high hernia, hoping it's not an ulcer or something.

Anyway, overall that laundry list is much less serious than it used to be. I am very, very grateful for that.

Things are pretty good. I have so, so, so much to be grateful for.

My little guy, Azriel, just turned 11 last week. Dovie is almost 18 (O. M. G.), Ya'akov is 16, and Shifra is 13 (although she is always sure to tell her age as "almost 14".) They are the lights of my life, the blood that runs through my veins. And Robert, well, he is the glue of this family. The stronghold.

Gratitude.

Thank you, Gd, for the gifts, and the lessons learned in the hardhsips.

May all my readers who are celebrating the Jewish new year have a year of health, strength, and an abundance of love.

(and may I finish my book this year! It is going well!!)

Necrotizing Fasciitis recovery: the ten year plan

If you had told me what would transpire after I had NF, and how many years I'd be really deep in medical problems, how many surgeries, how many seriously scary/dangerous medicines I'd go through in the subsequent ten years, I'd be stunned, and be convinced I'd die before all that stuff came about.

Well, it's good we have no crystal balls in our lives, because I get to be alive, I got to re-make that decision many times over the years (to stay alive).

At this time in recovery, I have "only" three prescription medicines I am on. That is pretty amazing considering some of the pharmacological insanity that has taken place over these years. I am actively in withdrawal from one of those three medicines- Lamictal. It is a hard one. Depression is hitting hard, I do not own my emotions. I haven't laughed or even smiled much recently. Those of you know know me well know that that is a very rare condition. Almost no matter what is happening, I always have some humor, and laugh out loud easily. Now, it all seems so dark. I know the Lamictal withdrawal is in the driver's seat. I can't do much about it these days. Tears are always close to the surface. Always. Of course, this time period lends itself to depression, too, even without the effects of going off the Lamictal (which is a mood stabilizer).

Taking into account that my heart has a Big Hole in it where my mother used to be, it is very hard to be in mourning. I am of course, also still dealing with discovering more things that were stolen in the robbery (more things with deep sentimental value. I'd rather have given the robbers the cash it was all worth, than have so many sentimental items taken. Now we only get the cash back from the insurance. Robbers, if you are reading this (which I *highly doubt*), here's the deal I am prepared to offer: The insurance check in exchange for our stuff. OK? No questions asked, no police. Just return what we deeply miss, that's all. Deal?

Then there's the frequent headaches. Withdrawal headaches, possibly. They come often, and although they are very difficult to go through my day with, the recent ones have not gone to Epic proportions, thank Gd. I have had one all day today, and still have it now, so I will make this short.

I dream about the next withdrawal being the sleeping pills. A *very scary* withdrawal. The more I read about withdrawing from Valium-based drugs, the more scared I get. My body cannot get into anything even close to deep sleep without a pill. It's been almost 9 years of that... every. night.
When I started it, I needed it. Raging PTSD had me not able to fall asleep, or when I could fall asleep I would often wake up screaming from terrifying dreams. I needed the pills then. My nervous system was in overdrive and there was no foreseeable way to tune it down without pharmacological assistance.

So, theoretically, the plan is to take the next few months to get completely off Lamictal, then take a break, then start with the sleeping pills, if I am in a space in life that will allow for it.

That would leave me only with one prescription drug... Cymbalta. It is for depression as well as helping the nerve pain I have regularly. So far in my 10 year plan, I don't foresee going off that. I think it is synergistic with my body's needs.

At some point in there I will decide if I will go on the daily-preventative-migraine medicine my neurologist recommended. I was already supposed to have started it. My gut instinct is to hold off. If my headaches are under control with the occasional swallow-full of analgesics (Excedrin + Advil together), I am allowed to take them twice a week, but not two days in a row. If the headaches don't get worse than that, I don't want another medicine permanently in my system. On the other hand, it may stop the migraines completely and I'm being narrow visioned here. I am just reticent of starting up a whole new drug. I want detox. I don't want to be a lab rat. I don't know what the new medicine might do to me with the side effects, and after all these years, I'm kinda 'over it' with experimentation. So, we're putting the new migraine medicine to the side. I don't have to decide about that today.

So, as I see it, with the ten year mark coming up in May 2017, I may be off two out of the three remaining prescriptions. The ten year plan.

I am already starting to see light at the end of the tunnel, but it is still very, very dark in here.
I started working out again at the gym, though, and that is very positive. Still doing Tai Chi, and I'm getting into more consistently writing my book, as well.

Weaning from the meds is the home stretch... with the help of God.

And with the help of all your support. Thank you, guys, for hanging in here with me. You mean the world to me. You are all manifestations of Hashem in my life. Support comes from Him in many forms. You, my caring friends, are certainly one such form of support. I am presently looking you in the eyes and thanking you.

weaning off Lamictal, 2nd attempt. (nasty drug)

Blog entry #1003. Wow. That's a lot of writing. A lot of living.

When I woke up this morning, feeling the familiar dull pain behind my eyes that grows into a mild headache for the past week (or longer), I wondered WHY. It is so tiring and debilitating to live with a dull headache on an almost daily basis.

This round of headaches is most likely from the weaning I am doing from the Lamictal. I am supposed to wean off of it in order to start a daily migraine medicine. The irony of it all.

Last time I tried weaning from Lamictal, about five years ago, it was horrendous, and I couldn't go through with it. I had to go back on it. My body literally could not function on any normal basis without it. I was hallucinating, having horrific nightmares, vomiting, having anger that is like an out-of-body experience, and finally a sort of psychotic break that made me go to a specialist who told me not to go off it. Not yet.

I researched my blog to find a few posts about it, back in 2011:

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November 30, 2011:

A few weeks ago I wrote about an awful day that I had regarding the wean off Lamictal. I am referring to this post.

Well, that particular day was hell.

I had what felt like a psychotic breakdown. I can't write all the details. I didn't have enough Lamictal in my system, and whatever it was that the Lamictal was stomping down, came up for air. Call it PTSD, but whatever you want to call it, it was deep, dark, and bad. It was triggered by a friend who was angry at me. I couldn't digest that anger like a regular person would be able to. It wasn't terrible anger, just your run-of-the-mill built-up anger from a friend to a friend. These things get worked out and pass in good friendships, like this particular one is. 

But that day, with the Lamictal at an all time low of 5mg (down from 150mg, mind you), I broke at the appearance of this friend's anger. It was a day that, before this phone call, I had been dealing with nausea, throwing-up, and hallucinations from the withdrawal. I later apologized to her for having my breakdown "on her".

The break was horrendous. I couldn't write about it then. Only yesterday, at my psychologist's (Lily, my once-every-two-weeks visit) office did it all come up again.

The next day after the psychotic break, as I am calling it, I went to a specialist; a psychiatrist who specializes in psych meds. He simply told me that: if it is awful on this low dose of Lamictal, than go to a higher dose. He explained to me that not everyone can go off medicines just-like-that. What about the contraindication with the Lyrica? Well, he said, on a low dose of the Lamictal, it isn't so bad. Is it *ideal*? No."But", he said, "is any of this ideal?"  Any other drugs he thought of to switch-to would have been, he said, much more toxic for me.

So I am now on a low dose of Lamictal-- 25mg. I am mostly stable, thank Gd.

But, I am more tired, and I am more depressed. That very well be because of going down so drastically on Lamictal. I haven't been depressed like this in a long time, you know? I'll make an appointment with my regular psychiatrist. It's just that I don't like her so much, but she is the drug decision-maker.

None of this is ideal. 

~My pain is, I'd say, 75% under control. The Fentanyl patches are at the right dose, thank Gd.

~The new cream seems to be the right one for Gapey's perma-rash... it is getting lighter and doesn't hurt/itch anymore. The graft is getting better....

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There are many articles and blogs about withdrawing from Lamictal. It's pretty nasty stuff. Here is one of the more scientific ones: http://www.lamictalanticonvulsant.com/withdrawal.html

For many years I have been taking 150 mg per day

I have been on it for NINE years. One attempt at going off, and I couldn't do it. I was on Fentanyl at the time, though, so that may have complicated things. I have had 150 mg of Lamictal in my system more or less for the 9 years since the PTSD came about.

I recently got to 50 am/50 pm, which is what I am supposed to be on in order to start the migraine medicine (Depilept). But as I am starting the migraine meds, I am supposed to keep weaning from the Lamictal until it is totally gone.

For a long time I have been convinced that I no longer need the Lamictal, but there is always too much going on in my life to randomly wean from such a strong drug. I have been through many weanings of hard drugs, we know that. It always sucks, we know that, too.

I am having some adverse effects from the Lamictal weaning, mainly headaches, which I have so often anyway that I don't know what to attribute them to. Yesterday and today, though, I had unbelievable tiredness. I basically slept all day today, but also needed analgesics to ward off a migraine. I took a sleeping pill in the middle of the day, which I never do, but I knew I needed deep sleep or the migraine would come on strong. My body literally forgot how to sleep deeply on it's own. I honestly do not know how I am ever going to go off the also 9 years of sleeping pills. It will probably be the next weaning. I am terrified of it.

Yesterday a friend came over. She has also had her share of horrendous medical things. But she went right back to work as soon as she could. She has been through a lot over the years since her medical crisis, but through it all she maintained her work. She told me very strongly that my biggest problem is that I never got back to work. I need to work, she says, in order to get back on my feet finally, and be back in life. I tried to explain to her why that is OK for her, but it hasn't been successful for me. She admitted that she doesn't have the medicine thing going on... she never had to take any hard drugs after her medical crisis. She also never needed another operation since that one. I've had 7 others, and lots of hard medicines. It's not a competition, but it is hard for me to come to terms, STILL, that I do not work. Especially because I miss my work, and know I'd be good at either of them (my careers) if I were to return. I tried to explain to her that I really cannot be responsible to someone else besides my family. That I can't always show up, no matter how important the expectations are. On my plate now is all I can handle. She says that if I had more on my plate, I'd handle it, too, it's just a matter of perspective.

But she doesn't have my particular set of circumstances. My problem is that I can't say that it's because of this (X) condition or disease that I am not working. I don't have any chronic diseases or illnesses. I don't have a label for why I am how I am. I just know that ever since I had necrotizing fasciitis in 2007 I have never been the same. Serious diseases and surgeries throughout the years, the medicine trials, going on then off them, the consistent pain, it all takes a terrible toll on one.

Oh, speaking about pain, my newest surgery on the right hip (not quite a year ago) is hurting a lot these days. I assume it is from the weaning. When I weaned from the migraine analgesics also the hip pain flared up.

And the restless leg syndrome is alive and kicking... also a result of weaning. Makes sleeping just that much harder. Nervous systems do not like weaning from drugs.

My fantasies of working again are ruminating in my head. I could do birth preparation courses... that is on my time, not answering to someone else's schedule. I built an awesome course years ago.
About playing music again, I feel it is too big of a job. Hard to get to a decent level again, and too many people to be answering to, too many people depending on you. But the question is, should I push  myself to work? I haven't yet. My kids are my work.... and it's quite full time.

My health is my work. I wish it wasn't. Maybe when I am off the Lamictal, and if the migraine medicine really works as a prophylactic, I may be available to work again. One day at a time. The hill before me is weaning off the Lamictal... and I foresee it being a very difficult climb. But when I get there, I will be so relieved. I came off of five years of Fentanyl... a class "a" narcotic. I can do this. I hope. It's scary, though, knowing what I know about this particular medicine.

I need to get back to the gym.

My mother passed away about 7 weeks ago, and I am still in shock, and at times a bit like paralyzed with that reality.

My house was robbed, and my gym clothes have mysteriously vanished. Completely vanished. The robbers stole many types of things that robbers steal, but my gym outfit? Yet, I cannot find it anywhere. I had to put back together my closets, one piece of clothing at a time after the robbery, I know exactly what is in there. I have checked everywhere. Really? Steal my gym clothes? Well, we'll put it on the insurance claim.

I can go back to the gym anyway, And go I must. It'll probably help the leg pain, too.