Had a bad week, but "I'm still standin'..."

(the title- the part in quotations- is from an Elton John song which I love)

In the past week, there have been a few times it was borderline if I should go to the hospital or not. Isn't that crazy? 

One time, last Wed I think it was, I had an over-swelling of lymphedema and could barely walk, and it gave me a fever and I thought I had cellulitis again. What I have also had before is Erysipelas, which is similar to cellulitis. Robert wanted me to get checked out at the hospital, I wanted to wait it out. I know the danger signs beyond what I already had that would make me go in. Sometimes I've seen my body fight this and win, and I want to avoid antibiotics whenever possible because I have so many antibiotic allergies. I stayed home and eventually, after about three days, my body fought and won. But then this weird rash, which has existed for months on my skin grafts, broke out in many other places. Again Robert thought I should get a check at the hospital, because it was accompanied by really awful weakness and this coughing I've also had for months. I was completely weak, it was a bit scary. Too many things at once. But I stayed home. I had an appointment set with my GP today, so I wanted to make it till today and stay out of the hospital. It's a very bad place for me these days, so many bad memories; some memories distant but ever palpable, some still too close.
Also, when one feels so awful, sitting around for hours on hard chairs waiting to have doctors see you is not my idea of giving my body a rest.

After a horrendous 9 hour migraine which I couldn't take anything for kept me down for yet another day, I was DONE. Robert thought it was brave of me to weather out the migraine instead of going to the hospital to get the IV cocktail that helps. I call it self preservation. I did take a few too many sleeping pills, though, to put myself out from the migraine. Don't worry, not *that* too many.

But along those lines, the "things have been very dark and scary emotionally" lines... yeah. Things have been very dark and scary. I think about death a lot. I am getting help, though, but it's not enough. I am seeing my psychologist from years back, and she's good, but I need a psychiatrist. I went to see my loved healer, Miriam Maslin, about an hour trip from me a few days ago also, trying to reach out for more emotional help. While I do feel the session helped me, she also feels very clearly that I need a psychiatrist to manage my medicines. Things are off, *I'm* off. I tell her things (for probably 15 years now) that I don't tell anyone else. This time she felt she was out of her waters... first time ever.
I'm upset that the psych hospital that I showed up in the ER a few months ago never followed-up. They said I'd have a psychiatrist within a few weeks. That was more than two months ago.

I need to follow-up on that myself, I know, but it goes into the category of Too Much when....

I have literally TEN different physiological (not psychological) tests to do in the next few months-- throat tests, scans- two different kinds for my two different leg problems, CT's, MRI's, blood tests, yadda yadda, and I can barely get those organized. I said to my friend today, what if I just don't do them? Well, OK, I may never get my singing voice back, the click may never get fixed. OK, let's say that. But the legs stuff, the PVNS follow-ups, the blood tests? I may not be walking by 70 (or earlier, Gd forbid if the PVNS comes back) if I don't do these follow-ups, and the pain will just get worse. And I may just keep feeling crappy if we don't have any blood tests to have insight into what may be going on. Next week it's an anonymous dermatologist for this crazy rash... and probably a swab of it to see if it is fungal or infectious. Then oh happy day to a women's doctor because of lymph drainage problems and the erysipelas (look up the link I gave you in the first paragraph).

And Passover is coming and I have a huge house. That goes with a thank G-d as well, but it's stressful.

I want the life back where I wasn't a patient. Being a patient is a full-time job, but without the joy.
(except when my friend Ken sent over Ben and Jerry's peanut-butter cup ice cream because I was feeling so crappy and he wanted to cheer me up! That was indeed joyful. :)
Oh, and the fact that I can watch Mary Poppins with my kids because I am home a lot, and I can spontaneously take them out to the new "Beauty and the Beast" one afternoon.... yes, there is good in having lost my ability to hold a job. That sounds weird, but you know what I mean.

I *may* go play in a very amateur orchestra next Thursday if I'm up to it... I've been practicing a teeny bit. One day at a time.

The one time this week I felt well,
I got dressed up to go to a dear friend's wedding (just the ceremony).
Still feeling pretty well now, the same night...
let's pray Shabbat will be good!
We have some special guests coming (Dev!! Shana!)

Animosity comes to visit for Yom Kippur... coincidence?

It flares up from time to time, this feeling of animosity toward the surgeon.
It flares up when my quality of life is disrupted more than the amount I have grown accustomed to.

One day before Yom Kippur,
when we are supposed to be careful about our thoughts and words,
I'm feeling anger.
Hostility, resentment, scorn, antagonism, bitterness.

These feelings really aren't part of my life any more. I shed them long ago.

But they come back, in the realm of my medical issues, when I am suffering because of his mistakes.

I remember one of those hospital days, when I had NF, I told him I can't feel a certain part of my body. He looked down to the floor, casting an embarrassed air, and said "the whole area was involved".

Involved. Indeed it was. At the time, I had no idea what was in store.

Lymphedema has gotten really bad. Even the pressure garment is not helping.
Help is on the way, but not until Oct 25th, that was the earliest appointment I could get with my lymphatic draining lady from years past. Nobody does it privately, I have a very rare type (of course).

I just had a two/three day flu. Fever, chills, joint pains, headache. Lots of people have gotten it.
The night I was shivering with fever, though, when different things in my gut were hurting, it got really scary. We know bad infections here. I've been through hell. I know what it looks like beforehand, too. We get more scared than most people. (I call it the infection ghost)

I did go to the doctor the next day. She gave me referral to the ER, just in case I needed it. She wasn't sure, either. If things get worse, go. If not, then just get better.
Thankfully I got to throw the referral away today.

I still have one spot that hurts way too much. I couldn't even touch it the night my fever spiked, it hurt like it was on fire. That particular spot has hurt on and off for over a year, and we don't know what it is. We may never know.

So, with tomorrow being Yom Kippur, how do I sum this up?
I can't.
Life is messy. Not everything can be contained in a pithy statement or two.
I'll just keep on working on myself and doing my best to take care of myself and others.

May everyone have a Yom Kippur filled with sincere dialogue with The Creator, and have the strength needed to forgive those who have made a mess in our lives... and to forgive ourselves.

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!!)

Brain MRI

Wow, Robert and I are under tremendous pressure these days. We are leaving for a month-long trip to the states, and things are wild and wooly. Neither of us are keeping it together so well, but it's gonna be OK. It has to be, right? We've done harder things. But as my dear friend Ken said earlier today... life is messy.

One of the zillion things I had to worry about this week was doing the brain MRI, and that was this morning. What a thing.

Oh, but I didn't write about how my hip/leg MRI came out from last week... I have the results from that. All-n-all, seems like things are OK around my hip joints. The MRI noted the lymph edema present, which I already know about and try to deal with. Problem with that is that I have to wear the pressure garment more, but it gives my skin grafts and the skin around it a heat rash in the summer months. So that makes me not wear it for a few days until the heat rash gets better, then I have lymph edema swelling again, and round-and-round we go.

There was one other small finding, but I'm completely not worried about it. It's some sort of cyst near the surgical area of my recent right leg surgery (from October).

I'll go back to my orthopedic oncologist after our trip to the states and clarify anything more. I am pretty pleased with the results, though, thank Gd. *No PVNS*. That is what we were praying for, No imminent surgery. Baruch Hashem.

About today's brain MRI... whoa. A whole new experience in MRI'ing. Wayyy not something I ever would want to do again. Please Gd I won't have to. All of you out there who have to do brain MRI's on any regular basis...? So sorry dude. It really is the pits.

Picture lying down in a head rest which encompasses your head until your face, then having a cage device put on your face which clips into the head holder thing. You can smell the cage thing, it is that close. OK, picturing that? Now that you are all snug and can't move your head or shoulders, imagine putting yourself, lying down on a stretcher, into a long, white tube, which is small enough that your feel your outer arms being pushed ever-so-slightly on your sides. You look around and all you see is cage on your face and white tube surrounding you. Claustrophobic? Problem.

Now, with all that happening, the MRI noises start. This time, it's all around your head! (I am used to the multitude of MRI's I've had for my pelvic area, hips, etc. That noise was further away from me, and my head always got to be out of the machine.) Then the machine starts up...LOUD.... zzzing...zing....bang-bang-bang for many minutes, more zingzingzing for another few minutes, clip-clip-clip-clip for another unbearable amount of time, and repeat all those sounds, randomly, for like 15 minutes. Then, you get rolled out of the white tube on your stretcher, and get shot up with contrast dye. Then you get rolled back in and another 10 minutes or so of the chainsaw sounds and jackhammering at your head, but this time with a strange burning sensation in your body from the contrast dye.

Oh, and the bit about the contrast dye? Well, today I had no veins for the first time in my life. The doctor couldn't get an iv into me, and he poked at my arms with needles 5 or 6 times, on both arms, before he gave up. He announced my veins "too scarred". I showed him the vein the other guy used last week for my other MRI (it was still a tiny bit bruised), and he tried it, but the needle bent... too much scar tissue. I've had a lot of iv's recently, in the past few months, with all the visits to the hospital for the migraines. That's, of course, not to mention nine years of manymanymany iv's and blood draws and hospitalizations. I never thought I'd be the one with no veins, though. My friend, who is a cancer patient and on chemo for the second time in as many years, *she* has no veins. Chemo does that. Well, maybe the doctor today just didn't have the "knack" of getting an iv going. I look like a junkie now, though. So how did they get the contrast dye into me? It was lovely, let me tell you. They rolled me out of the white tube, head cage still buckled tight, pulled an arm out, and fiddled again with my veins. "Don't move"... yah, gotcha doc...
They somehow got the dye in (I couldn't see how because my head was locked down), and rolled me on my stretcher back into the tube for more amplified jackhammering and zinging. This time with the weird warming sensation whizzing around my body from the dye.

I used my powers of disassociation as much as possible. I was organizing our trip in my head, making mental lists of calls and errands, thinking about the beaches we'll go to, worrying about my mother, worrying about my father, organizing life. Mainly trying not to get freaked by my encroaching PTSD from the loud noises and feelings of helplessness. I hate loud noises.

One thing happened which I am just "letting go" of, because this is all out of my hands, you know? I'm sure it was just some technical glitch or something, but in all my experience of MRI's, this never happened....

I was in the tube, and the noises were happening for about five minutes, then machine just stopped. OK, that does happen a lot, they do their techie thing. But this was a really long time, inordinately long, that I was just lying there, head in the cage, with no pictures being taken. Then I hear the outer door, the technician's room door open. I hear more footsteps into that room. Door closes. I am in the tube thinking "seems like another person just came in". There is a little rear-view mirror thing attached to the head cage thing, where I could see an angle into the technician's place. I think it is there to help the claustrophobic people to see out of the tube. So indeed, I noticed there were three people there instead of just two. They were all looking at the computer screen. Was a new guy brought in to see something unusual? The worry takes root in my harnessed down little head. Honestly it felt like forever, but it was probably just 3 or 4 minutes, then dude number three walks out, and the MRI starts up again. What was *that* about?

At the end, I was happy not to hear what my little brain feared: "you have an aneurysm, you need immediate surgery". Read again- I did *not* hear that from the technicians. But my mind went there. Tricky little things, these minds we have, even when buckled down in a cage. *Especially* when buckled down in a cage.

At the end of the whole thing, I asked the technician if that big break was anything to worry about. They said that they are not allowed to say anything to the patient about the test. They are just the technicians, I need to wait for my evaluation to be ready in 7-10 days. I then said I am flying overseas in a few days, and I asked if there is anything I need to know about. Again, the mantra: you will get your results in 7-10 days. "Have a good trip". Okee Dokee, techie man, thanks! I'll go do that!

And now my friends, I am exhausted. I have so much more to document, but not enough time in the day. I honestly don't know if I will find any more time before we leave on Sunday morning. I stole this time from myself; it could have been my resting time. But I needed to write.

And with all this? Just the tip of the iceberg. It's been a crazy time period. I have let important people down because there is just too much on my mind and heart. I hope those people really forgive me.

My mom is not doing well, over the last few weeks there has been a drastic deterioration. She's not the same mom I left last summer. She isn't communicating much anymore. Sleeps a lot. Very sad for my kids that they haven't seen her in 2 and 1/2 years (at least that's true for the boys. Shifra and I were there last summer.)

What happens if I get a mega migraine in New York? Or any other destination? I pray. I wait it out. Maybe I go to the local ER if I just can't take the pain any more. It's out of my hands. I'll have the evaluation of my MRI from today in 7-10 days. I have access to it on-line.
The rest of it, it's out of my hands.

We did an awesome thing, though... we rented a house on a lake in Connecticut. Just for the 6 of us Kleins. You see, during the year, my older boys learn out of town in Yeshivas, we only are together Shabbats, and not even every Shabbat, at that. We have not spent quiet time together as a family in a long, long time. This house we are renting is right on a lake, and there are canoes and boats for us to freely use. It's called chill time for the Kleins. I am so looking forward to that, you can't imagine. I NEED it desperately. I want to coast on the gentle waves in a canoe, and just listen. Heaven. Quiet, clear, water. It is what is saving my sanity on this trip. I pray for that. I live for the water. I live for Torah, and I live for Hashem. And my family. Especially my family.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ps- I had to totally go off the medicine that my neurologist gave me which was meant to be protection against the migraines. It gave me awful tremors in my hands, shortness of breath, weight gain, and other undesireable effects. I now have no medicine at all for the migraines. Hashem, please protect me and hold me in Your hands.

Sounds a lot like regular life, right?

It's been a while since I've posted, I know. I miss you! :)

If I don't post for a while, it is usually one of two things ... either black or white. Either sadness or euphoria (Billy Joel lyrics). Either sickness or health.

In this case, it's a combination. But overall, I am in a Good place, baruch Hashem.

Lots of good, mixed with some bad, and a few so-so's thrown in there for good measure. Sounds a lot like regular life, doesn't it? I think that's what is slowly happening, I am getting back to regular life. I am starting to make myself a schedule again, after not having any schedule for many years. I joined a gym, and have a plan for going to the gym combined with writing my book. The gym is in the huge mall near my house (boasting to be the biggest mall in Israel. I hate that mall, actually- far too much walking- if you are shopping- with escalators poorly placed for handicapped). The good thing is that I can park my car near the entrace with the escalators leading to the gym, do an hour work-out (mostly physical therapy, strength-type stuff), then go to one of the cafes in the mall (one is down the same escalator that leads to the gym), to set up my laptop and write. I find I write best in a cafe. Write my book, I mean. I can blog easily from my bed at home, but for book writing, the kind of concentration I need comes easier for me when I am not at home.

I feel really good about this plan. I have re-started writing my book, and it is going really well. I was stopped for about a year. It was a combination of the hardships of going off the Fentanyl, dealing with 10 months of narcotic withdrawal, and then this surgery I went through almost three months ago.

My book was also stopped at a point where I couldn't work out a good transition. I am now deep into chapter two (of 8), and I knew that I had to introduce the main theme, and it was too big for me. I couldn't think of a transition from the details of the story to the large theme the book is based on. The theme comes from a dream I had while I was in the coma. It took me a long time of sitting with it to realize how it will all fit together. A few weeks ago, I got an inspiration... one small sentence... that catapulted me into that transition. I wrote that sentence down at midnight on pen and paper, and that was all I needed. The right thought at the right time. Thanks, Hashem! :)

So, the plan is that there will be days of gym/writing, alternating with days of gardening. Last year, I couldn't do any gardening. Not only because of the above reasons, though. It was, what is known in Judaism as a sabbatical year (שנת שמיטה). It is a Torah mitzvah that is commanded of Jewish people when they live in Israel. Someone outside of Israel cannot observe this incredible mitzvah. It literally gives a sabbatical year to the land itself. One is commanded to not do any farming, plowing, gardening, planting or harvesting of any sort. The land of Israel must remain un-worked for a year. It is the year we give back what the land gives us. There are many laws and instructions on how to deal with produce during the sabbatical year. It is basically considered holy, and disposing of the produce or it's byproducts must be handled in a certain way. It's very cool, in my opinion. It brings holiness into our entire eating/shopping experiences. It is one of the things I adore about living here.
Anyway, I didn't do any real gardening, and now the garden(s) need help. I couldn't do it last year anyway with all I was going through physically, so Hashem let me also have time off to work on what was most important for me; going off Fentanyl, and having the surgery.

I look forward to gardening in the next few months. I've already planted a few new plants near our front door and I love seeing them each time I walk in and out. And I have more plans (and plants) brewing....

I hope my hips can handle the gardening. I feel I can do it. I'll keep you posted!

A few other things:

I have been free of lymph-edema since my surgery. The surgery made me stop wearing the pressure garment because the incisions were too sore. Then I saw that I wasn't swelling as much as I used to in the NF area, so I am keeping off the pressure garment! This is *huge*... I wore it for 7 years. It's tight and hot and restricting. I am liking not wearing it. At the same time, though, I am still not used to how clothes feel without my prosthetic pillow that the pressure garment has, which fills in Gapey. I can't put the pillow anywhere without the pressure garment having the pocket for the pillow (the garments are all custom made, of course.) So without the pressure garment, I have no prosthetic pillow. I'll get used to it. Or not. We'll see.

I am also trying to get used to my throat "click" issue. I hate it, truthfully. The most frustrating part is that it wakes me up sometimes in that light sleep time before you really fall asleep... it makes a sound in my head, and that mechanical click feeling when I am just swallowing my own saliva, and it jolts me out of light sleep. Not good. So far nobody has come up with a solution (apparently it is a dislocation of tiny cartilage), so here I am trying to get used to it. Apparently it's an extraordinarily rare occurrence from my head being in a bad position during my last surgery. *Of course*, ...it's me. Something strange and incredibly rare was bound to happen. (my cynicism showing through!) I (we) just could not have guessed what it would be. I keep saying to myself at least it isn't painful. This is the first complication I have experienced (of so many) that isn't painful. Gotta count your blessings when you can!

With this, I am going to go to sleep.
Now, if I write less frequently, you understand why. There are actually other reasons, too. Those have to do with supporting a few friends who are having medical crises at the moment. I won't get into the details here, but I choose to give my time to support friends as much as possible in their times of need. Those times can get very dark, dealing with medical crises. I Know. I hope my experiences can help others.

Have a good week to all!
May we have good news on all fronts, and strength to handle all life hands us.

About the war, lymph nodes, and God.

It was Azriel who made me realize that I am snapping at people these days.
There is an underlying tension in Israel now that is impossible to shake, and I guess I have been snapping a bit. Today we were baking a cake together, and when I needed him to move out of the place where I had to be to work the blender, he jumped down off his stool and ran upstairs crying. It took me a while to get out of him what happened, but eventually he told me... I didn't ask him to move sweetly or with patience. I apologized for that, then he told me that I have been "not smiley and nice" recently. Yeah, they really can pull at the heartstrings, can't they! He helped me realize that I am very tense about living in this war. There is so much tension- it's as thick as the conflict itself.

You know, the UN gave us this land in 1948. People seem to be forgetting that. We are seen as "occupiers". How did that happen? Why is the UN now letting part of the country be run by a terrorist organization with their charter which calls for death to all Jews? They agreed that we deserve a proper homeland. Why is the UN leaving us alone, to protect ourselves all on our own against this terrorist organization?  More than that, they are even pointing accusatory fingers at us, and supporting the terrorists! The UN is not comprised of who it used to be comprised of, that's one thing for sure.

I can't write more than that. Too hard, too close to my heart and spirit, too painful. "Where this is all going to end" is the scary, unspoken question on everyone's lips here.

So, I got down to Azriel's level and hugged him really strong. He was puzzled why the war is causing adults to be tense, after all, we aren't getting that many air-raid sirens... and today we haven't had any [yet]. Oh, to be a happy child.

On the physical front, I am having a big problem with lymphoedema (yes, it is spelled that way- it refers to swelling of the lymph nodes, and lack of ability for them to drain lymphatic fluid.)

Sine I had the cellulitis a month ago, the lymph nodes near the area of infection have not been able to drain the fluid. There aren't many lymph nodes in that area to begin with. The NF infection killed them all, and they needed to be surgically removed. That's why infection can settle there- there is no system to combat it. For a year after NF I went for lymphatic draining, and it got a lot better. Now it's back, and much worse this time. I have had two sessions of lymphatic draining (a sort of massage), and the therapist (not the same one I had before) says that the problem is in "S.O.S" proportions, that there is a serious threat to my lymph system. I may have to go back to wearing a pressure garment to reduce the edema, which was awful. Right now she wants to see me three times a week, in a clinic here in Be'er Sheva (thankfully). It takes a long time to get the fluids to drain, the whole system is stopped up. We have hour-long sessions, and it is not even enough time for her to open pathways for the lymphatic fluid to drain out of the lymphoedema area. This may sound complicated. In short, I have another difficult health problem stemming from NF, and the most recent bout with cellulitis, and I am more susceptible to infections because of it.

In a few days, I am scheduled to go for more allergy testing for the purpose of seeing which antibiotics I can take, but I am leaning toward not doing it. That, I believe, is what gave me the cellulitis a month ago. On the one hand it would be good to have more antibiotics on the "OK" list, but on the other hand, does it really matter that much? I mean, I have gotten sensitive to antibiotics after having taken them many times before. Who's to say that if I get tested again, and we put another antibiotic on the "good" list (or "definitely bad" list), that's not likely to change?

I have my plans for new York and Baltimore in September. I am *very* excited about it!
I have enough trust in God, and have been through enough to know that if, for some reason, this trip would be not good for me, He would put something in it's way. It's that way in my life- always crystal clear if Hashem doesn't want me to continue on a path I have chosen. Recently it was with the surgery I had planned, and then getting the cellulitis. Those events showed me that I am super-vulnerable to infections, and the surgery isn't happening because of that. He knows what we don't know. I'm not happy that I have to postpone fixing my right leg. But, I also don't know what the future holds in the way of challenges. I have been through enough to know how to take a loud, blunt hint. (Having a huge reaction to pre-op antibiotics a mere minute before anesthesia is what I call a loud, blunt hint. That, and everything that followed it.)

About traveling, I look at it this way: We all know this will be quite hard on me.
Harder, though, would be knowing that I decided not to do it, fearful that something may happen while I am there. I know that I have to make decisions that feel positive and moving toward growth. That is what life is about- always moving toward growth.
At the same time, as I said above, I know what it is like to get big, loud, blunt hints to not go through with a plan. I'll listen if it happens, just like I am listening and not rescheduling the right leg surgery.

Me and God have been through so much in my short life... we understand each other. We communicate. Any way I can, I embrace the life He gives me. We're good. B'ezrat Hashem (with the help of God).

Lymph edema left-over.

After everything that has happened since the day the surgery was postponed (here is that post), I am indefinitely postponing the right hip surgery.

I have learned a lot about being aligned with my intuitive voice since NF.

Since the surgery was postponed because of my allergic reaction to antibiotics, then the follow-up allergy testing, then cellulitis (four days later), and a near-relapse last week after three days of vacation, I understand that my body is more susceptible to infection than other people's. I hadn't really realized this before. Maybe that sounds crazy to you, but I had my own belief that I was the statistical anomaly which drew the short straw, so to speak, and got NF. While that may be true, the damage that I was left with *does* increase my risk of infection.

At the moment I am suffering from lymph node overload. It's something that I dealt with the year following NF. It's called lymph edema- swelling in the area where the lymph nodes have been damaged by illness and/or surgeries. The damage happened with NF, and the whole year following NF I needed lymphatic massage, which was the only thing that relieved the discomfort. The lymphatic massage itself was actually quite pleasant, thankfully. The purpose is to "train" the lymph system to drain by way of the undamaged areas of the body through gently massaging fluid under the skin layer. After the year of this therapy, the lymph edema was pretty much under control. I would feel it occasionally, but not too bothersome.

Now, after this last bout of cellulitis, it is back. The lymph system near where the NF was is all swollen and painful. I have tried to do the lymphatic draining myself (as the therapist taught me years ago), but it's not helping. So, I will be starting a new course of lymph edema treatments.
Just what I need- once a week traveling to have this appointment- for who knows how long.

I was susceptible to the cellulitis because of the lymph damage. Infection settles there because there are no lymph node "soldiers" to combat it.

In short, I am not in any position to go through a surgery. My orthopedic surgeon told me a long time ago that he doesn't like the idea of operating on me because of the infection issues, but I always thought he was being overly cautious, that the chance of me coming down with an infection was just like anyone else's chance. Now I realize he was right to be cautious. Even with that, he was willing to operate on my right leg if I decided to. He wants me to be out of pain as much as I do. So, we decided to do it. The rest is history... only a month ago! Getting a serious infection in the interim has been a wake-up call for me. I am just going to have to deal with the pain from the hip. I don't know for how long. It is nice to think that the teeny tiny voice in the recesses of my mind telling me that maybe the broken labrum will heal itself in the time being is the voice of wisdom and truth. That remains to be seen. Since I am not going to go ahead with the surgery, we will have an opportunity to see if that will happen or not. :)

OK, even though I want to write more, I will end this here. I promise a post soon with pictures of vacation, and of my kids returning from camp (yesterday) all tan and magnificently happy!!

It's just that when I wait for a post to be finished, it winds up taking so long that more things happen, and there is too much to do. I am very busy with writing my book proposal for the contest, due Thursday!

Gotta go. On my way today to Jerusalem for an infusion of Torah with some classes I am going to attend. Bus in an hour. Bye!

(tomorrow is the ultrasound of the new right side pain... let's hope it's nothing.)