Sunday, September 18, 2016

Pain. It'll never end, it's just never going to end.

I find myself needing to *remember* to smile, to purposely uplift the gloom settling around me. Because, I am One Gloomy Me.

I have three friends battling cancer at the moment. Three. That number went up 150% in a few short weeks. I have one friend watching her mother deteriorate from Alzheimer's.

Disease is just one of the suckiest things on the entire planet.

I also just watched my mom deteriorate  and eventually pass away over the course of five years, bedridden. Lots of diseases in her past, not important to document them here.

I almost cannot bear it anymore, the disease, the illnesses, the lives changed forever because of disease. Once a person gets a diagnosis, their entire life's plans change course. Forever.

39 years old. That's how old I was when my dreams came to a screeching halt. Today, resentment is bubbling up to the surface. Resentment is really sadness in disguise.

I heard some beautiful horn playing on YouTube yesterday.... I want to play like that. I *can* play like that, if it weren't for disease. I hear those recordings, and I think to myself "tomorrow, yeah tomorrow, I'm going to pick up my horn and play again". Then disease strikes, and I don't do it. (lump in throat, tears welling) I miss it so much it makes my heart literally hurt. It hurts to listen to music.

In the meantime, thank Gd my kids are off to a good start to the school year. Ya'akov is in his third new school, let's pray this one understands him better. Everyone has their "thing", and they all seem to be adjusting.

Me... not so much.

Remember that surgery that I have been pretty quiet about because it was successful, almost a year ago? The one that fixed my right thigh joint? Well, it's hurting more and more, over the past month or so. It doesn't hurt as much as it did before the surgery last October, but the pain is gradually creeping back. I am still in the process of going off Lamictal, and my experience is that every time I go off a medicine my assorted problem areas flare up. But, the difference here is that Lamictal is not a pain medicine. That doesn't mean it's not effecting my pain, but only time will tell. I am currently on a dosage of 25mg a day, down from 150mg.
I just have a feeling that I'm going to need a hip replacement before that 5-10 year timeline my orthopedist gave me. Sometimes the idea of needing another surgery can put me into such a depression, such depth of despair, it is scary. But the pain... it's ramping up. I used to be able to bend (since I healed from the surgery), and now it's getting harder, more painful. I will not go on pain meds, my body can't take anymore. My soul can't, either. Can't take anymore surgery, pain meds, migraines, all of it.

I'm pissed at life, at Gd, at cancer, at medicines, at the cruelty randomness of disease.

(in my more spiritually grounded days, I would not be angry at Gd, and I would not use the word random. But, here we are. Ride this out with me, will ya?)

There are so many people who say "well, yes, if you do this and this, you will be much better! Or, if you have this or this attitude, you'll see everything around you change! Or, go to **this** special amazing doctor, he cures everyone, you must go to him/her". Or "I can recommend a diet that would help. Do you drink enough? Do you have good sleep habits? You need to go out to work, it'll get you out of the house and your prospective will change." and on and on and on and on.....

I've heard them all. ALL. Many times over. Well-meaning people, healthy people.
People who struggle with chronic illness don't say those things, because we know that there is no magic to getting your life back.

But it's not coming back. This is it. I can look forward to more pain, more surgeries, more migraines.

And my friends with cancer, I can't even go there. I just cry. I scream, also. And I help as much as I can.

I want to go do some "bucket list" things, because life is Too DAMN Short.
Not this year, though, I am in the mourning year for my mom. It's been two months now... Now I only think about her a few hundred times a day instead of 1000.

I'm constantly on the verge of tears.
Loosing my mom, having our house robbed (every day I am missing the things that were stolen), awful effects of weaning from medicines, hospitals, horrific migraines, increasing pain which looks like it's leading to a hip replacement, less than a year from fixing it. Possible PVNS in my knee. Beloved friends suffering. I CAN'T. I just can't. Robert is busy up to his eyeballs with work... three teaching jobs and home editing. He works so hard, partially because I CAN'T. The kids are constantly a handful, I have no air to breathe. I give and give and give, as much as I possibly can, and my tank is emptying out. I need a quiet vacation with my husband, no kids. Probably not so likely in the near future. The "state of the union" is suffering. How could it not?

Gotta end this now, Azriel needs to get picked up. Then a full afternoon of cooking, chopping salads, cleaning up, laundry, driving to and from activities. Oh, and making Turkish coffee and providing cold water for the workers who are painting our house at the moment.

Thank Gd for all the GOOD. But I'm not doing so great.

Thursday, September 8, 2016

No plan, actually.

About that last post... ten year plan.... well, honestly I realize that there can be no plan. There can be no time line. I have days where I am closer to accepting that these changes I had in my "life plan" are here to stay, and days when I feel I am waiting for that past-tense Sarah to come back.

They say that you either get better or you get bitter. I used to be bitter about this all... all of it... the victim mode of how I got NF, all the diseases, pain, and surgeries that followed, everything. I don't think I am bitter at all anymore. And yes, I am better, but not all better, and I am pretty sure I'll never be all better. I have to accept reality, and not keep hoping to return to being the active professional musician and doula I was. It doesn't mean to give up hope, I have not given up hope. And I know I am a trillion times better than I used to be health-wise. Reading back in my journals, especially the CaringBridge ones (which I do often for writing my book), I am constantly *astounded* with how sick I was, for many many months; years, actually, and in so much pain. It is mind boggling.

My yearly follow-up for the PVNS in my left thigh brought with it a question mark the other day in Ihcilov hospital. I have been having knee pain. No injury, just some pain, going upstairs sometimes, and when I do Tai Chi or work out. Left knee. I told my doctor this, because he asked how my other joints are doing. He examined my knee, and then ordered an MRI. Suspicion of PVNS spreading to the knee of the same leg. It does that. PVNS acts like a cancer in that it can regrow new tumors whenever it wants, and in any joint. The difference is that it can't kill you directly. It can destroy a joint to the point of needing amputation if it is not taken care of early, but it doesn't have potential to take over the body. It's an oncological giant-cell tumor disease, but thank Gd not directly deadly.

So, now I have to take care of getting an MRI test for the knee. My personal gut feeling is that it isn't PVNS, but we have to check.

On another front- the headache world tipped the scales yesterday.
I had been nursing a headache for a few days with analgesics. Since the weaning from them, I am "allowed" to take them twice a week, but not two days in a row. I had taken them twice already, a little less than two full days apart, and yesterday a headache developed that I knew I couldn't medicate. Well, yeah, you guessed it. It got worse and worse until I almost exploded. I thought "maybe I should just ride this out, see how long it takes to go away on it's own". But, as the day went on, I was in so much pain, I could barely see, and I was moaning and writhing in my bed. It just kept escalating. It is so frightening. I threw up, too.

I took a cab to the hospital when I just couldn't take the pain anymore.

It took longer than usual, but I did finally get the IV "cocktail" that I need to break the migraine. Thankfully there was a good neurologist on call, and she remembered me from last time. She also agreed to shut off the lights in the room we were in, even though she needed to write on the computer. I so appreciated that.

I am home today, but still with a headache. Not a migraine, but I'm laying low.

I started the new migraine medicine today. I had been avoiding it. The reason I started weaning off the Lamictal (which I am still doing) was to start the medicine which is supposed to help the migraines. I hadn't started the new medicine, though, because I just didn't want to. I don't want more medicines in my body. You all know this has been a long-term goal for me. I hadn't had a really epic migraine since I was in NY a few months ago, so I was thinking maybe I just won't start the new med, and I'll wean off Lamictal, and my body has less medicines in it! Sounded great... until yesterday. Truthfully, it was like a two-day headache already by yesterday because I had been medicating it at home. The fact that it is lingering today makes it a four day headache. Even if this is "only" going to happen every few months, it is horrendous. And there is no telling when it will hit. I keep a journal of my headaches and trigger factors. There is no rhyme or reason any of us can see as to when they come. So, as I continue to wean off the Lamictal, I started the Depilept today. Let's pray this will help. I am sad about starting a new medicine. Side effects... what will happen now? I hate it all so much.

I have to close the computer now, my eyes are bothering me because of the headache.

Hopefully better news next time.

Wednesday, August 31, 2016

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.

Sunday, August 21, 2016

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:

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
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....
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

There are many articles and blogs about withdrawing from Lamictal. It's pretty nasty stuff. Here is one of the more scientific ones:
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.

Friday, August 12, 2016

I gotta say, things are really rough

Definitely a rough patch over here.

Very rough.

Yes, I know things could be much worse, so having acknowledged that, let's proceed.

Cleaning up after the robbery has been awful for me. I had no idea how difficult it would be. Robert has been helping, too, of course. It seems easier for him. He said he kind of has a layer of teflon; things roll off him easier than they do me. In general he takes life with less angst than I do. Thankfully.

I have been going very slowly with these messes the robbers left around the house. Mostly concentrating on my bedroom, which got hit the worst. It's a huge bedroom with a lot of stuff stored, it is a lot of work. At this point, I miss my organized house more than I miss the things which were stolen. Organization in your outer world helps in organizing your inner world. It's so true for me.

Every mess I tackle comes with anger, sadness, and a kind of repulsion that the robbers disgusting hands were on all my stuff. That's what everyone means when they say it's a huge violation.
I've had a few bikes stolen in my life, but in all the numerous apartments I've lived in, including inner city Boston, the poor side of Cambridge, and inner city Manhattan, I've never been robbed. I guess I've been lucky until now.

It'll get done. We are almost there.
Then we have to make a claim to our insurance, get reimbursed, and move on.

I'll miss the silver kiddush cup we had under our wedding canopy for our marriage kiddush (which we used every week for 18 years to make kiddush every Shabbat), all the children's "bechers" (silver kiddush cups without stems) with their names engraved on them from when they were born; my parents bought each one of them when the kids were born. The set of cute small cups from my brother Peter we use every Passover, our havdallah spice container, the kiddush cup from Robert's aunt to his grandfather (also sentimentally engraved), I could go on. Everything that was stolen was sentimental. Well, not everything, but many things. I won't even go into my jewellery. I'm sad about two things especially... an antique locket with diamonds on it; a gift from my father for my 16th birthday, a gold chain I bought with the first hundred dollars I made as a waitress at my first job in Boston; a symbol of my independence. You get the idea.

Again, my mantra these days... you can't take it with you.
I just buried my mom... that mantra is very poignantly with me these days.

On the headache front:

Not good. Pain is never good, unless you are giving birth. Which I'm not.

I saw my neurologist a few days ago. The good news is that the "thing" that the MRI showed is nothing to worry about. It's not what is causing my migraines, that's for sure.

So, we move on to medicine trials. Joy. I hate playing around with meds, trying new things. No choice, though. I can't keep showing up to the ER with blinding migraines.

I am now starting to lower the dose of one of my meds, and when it gets to a certain dosage, I should start on the new prescription for migraine prevention meds. Weaning off a medicine, again. It's never easy. This particular one, though, I am pretty convinced I no longer need. It just hasn't been evaluated in a long time, I've been on it for eight years. Time to go off it anyway. I pray the withdrawal isn't too crazy. Pray with me, OK?

The proposed new migraine medicine is something I have taken before, and I don't remember why it didn't work out. My neurologist wants to take a chance on it because everything is different now that I am off the Fentanyl, and off the daily analgesics. How I reacted before, he feels, has little or no bearing on how it'll be for me now. We'll see. Another "lab rat" few months ahead of me.

For now, I am dealing with the third day of a nagging headache, but not a migraine. Nothing is working to take it away, though. I just took my SOS steroid pills, hoping it won't turn into the migraine it feels like it's turning into.

Yeah, I'd call this a rough patch.
In a way it makes sense with Tisha B'av in a few days. Doesn't make it easier, though.

For today, Shabbat Shalom. I mean it with all my heart. Shabbat Shalom.