The state of The Union

If I had a nickel (or shekel) for every time someone said to me "I wish I could take your pain away"...
well, money wouldn't help these problems anyway.

Nobody can  take my pain away. Dr. F is doing his best, but it hasn't happened yet. I have had days here and there of amazing improvement, but somehow it always goes back to pain. That's where I'm at now. Pain. Abdomen.

But you know what is actually worse than constant pain?
The eroding of a really great relationship. I'm talking about what, in my blog titles I call "the state of the union". My marriage.

I have to write, but without going into too much intimate detail. I just have to write. I have to let others know that illness takes it's toll everywhere and anywhere it can.

It makes relationships unequal. It's been this way now for ELEVEN years. And we've only been married for 20. The first 9 were us working hard, buying our house, having four babies and living extremely sleep-deprived but good lives.

The second half of our marriage, where we are right now, has been insidiously undermined by illness and hardships that most people will never understand, for 11 years. Our kids are all 11 years older. They are all more independent. We've done our best within an almost impossible set of circumstances. We've had a lot of help from our friends (that's putting it mildly... without our friends I can't imagine where we'd be now. I just cannot imagine). Neither of us have much family here, and the family we do have were also very busy with building their lives and raising their kids.

Nobody talks about what happens in a marriage/family when one partner is always (or nearly always) not well. It's an imbalance in huge proportions. Both partners are overwhelmed with their burdens... one in pain or not well (with all the family's needs in mind while they are helpless to effect changes), and the other taking care of the kids, the house, the paperwork, money issues, shopping, driving, and everything in between. My kids started doing all their own laundry at a pretty young age (Azriel is the last holdout with that, he still doesn't do his own, it's time I pushed him to do that. I have wanted to spoil him, or keep him sheltered more from the hardship that is our family. He's my "baby", and I am guilty of spoiling him).

When the ill partner is the female, things are even harder. Men are not natural caretakers, women are. It is well documented that in marriages where the female is the ill partner, the rate of splitting up is much higher than in marriages where the man is the ill partner.

No, Robert & I are not planning on splitting up. Just to put your mind at ease.
But things are really really really really hard. (cue: tears. me. right now. lots and lots in recent days/weeks.)

I can't remember the last time we had a date night. I just haven't felt well in so long. And he stopped thinking of planning them. It's always pain... body pain or headache pain. Or pure exhaustion. Or all three.

We had a Shabbat all alone three weeks ago for the first time probably since we had Dov (almost 20 years ago). Was it awesome? No. Life is not perfect. BY FAR. But we did manage to have it be good somewhere from the middle of Shabbat and on. Havdallah (the end ceremony at the departure of Shabbat) had us dancing romantically together.

Fridays have been awful, though. I often come into Shabbat with deep circles under my eyes from the crying and hardships from Fridays. It's been this way for a long time.
The dark circles under my eyes don't seem to ever vanish.

I need things a certain way. I can't produce it all myself, I don't have the strength to do it all. Over many years I have learned to give up on much of what I thought I needed. I couldn't do it, so it had to be OK not getting done.

But I'm getting better now, and the imbalance is blaring. I'm getting better, but not better enough. I'm getting healthier, but not healthy enough. I absolutely need things a certain way, and it must be unilateral if others in the family don't care about those things. There are lots of mean, nasty things that come out of my mouth, especially on Fridays. Why especially Fridays? Well, often everyone is home, and Shabbat is coming, and it is the culmination of all frustrations from the week. Last week, if we didn't have guests coming to sleep over, I might have left. I certainly wanted to leave. I don't know where I'd go, but I was in a BAD WAY. Even when the guests came, I couldn't greet them, I was in too terrible a state. I was crying for hours and hours. I finally met them, with red-rimmed swollen eyes, apologizing for not being available sooner. I managed to put everything aside to welcome the Shabbat Queen, sing at the table, bless my kids, and honor Shabbat. But immediately after, the sadness came storming in again.

Things are not good. Not good at all. As I said, I'm getting better, but not better enough. I'm thinking that the rest of my life (and I'm only 50) will be this... not quite sick and not quite healthy. I pray that my treatments with Dr. F will bring me beyond that reality, but as of yet I don't know that. I had a treatment yesterday, and, like usual, I am drained, exhausted, and in pain today. A few needles he put in different places yesterday are really hurting... one is very bruised, right under my umbilicus, so when I lean up against a counter top to wash dishes or whatever it hurts. It'll go away, I am used to these things. I hope that he won't unintentionally burst that encapsulated cyst of infection in my abdomen. The infection ghost always haunts me.

I haven't been a very good communicator to Robert. I am closed off, hurt and upset, and feel so distant. He's hurting, too. My life feels like a complete and total mess, failure, useless, and unproductive. And I'm so angry at NF for taking so much from me.

And I can't open up to my husband, there are too many layers of hurt there from years of being forced to be the ill one and not having things taken care of the way I needed them, but didn't have a right to say because I am the ill one and everything falls on his shoulders. It's an impossible catch-22. He couldn't admit (to me) that he feels put-upon because where would that get us? Now I have a little more life, a little more health, and the proverbial poo-poo is hitting the proverbial fan. I don't have a lot of health back, or a lot of life back.

Dr. Frischman & his wife just left to go to the US for an unknown amount of time. Two or three weeks, maybe more. So I'm on my own to keep trying to heal with the Chinese medicines.

And I need other help. Maybe with Robert, maybe without. It'd be better with him, but that is up to him. I haven't had any counseling emotionally for a very long time, and I need it. We need it. Our lives are not normal. But it needs to be someone very experienced, very wise, perceptive, and spiritual for us to be able to relate to them. Our problems are multi-layered, and haven't been taken care of.

It could be that going off my medicines is triggering the recognition of these issues, but they were always there. It's just that now I am feeling it all, the psych medicines aren't numbing my feelings. It could also be that I am in deep mourning for the loss of both my parents over a very short time period. I haven't really talked much about that, but not a day goes by (or actually an hour) that my heart doesn't hurt from those (these?) tremendous losses. Sometimes I feel so alone and cold from such tremendous loss. Sometimes I feel so desolate and broken, it feels hopeless.

Please don't feel sorry for me. I just need to write things how they are. I need to write it for you, and I need to write it for me. And things are really, really hard. That's reality. It would be better if I could open my heart up to Robert. Let's pray for that.

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.