Tuesday, October 17, 2017

Unwelcome New Chapter

I'm at the very scary, but not unimaginable point of wondering if this is EVER going to end.
The stomach pain is my constant companion. I have been taking the medicine for 11 days now, and there hasn't been much, if any change in the pain level. If I'm standing or walking around, I'm in pain, and it's a lot. I can't take it. I need to get off my feet for the pain to let up. Sitting helps, lying down helps more. I am rapidly losing strength because of this. My morale is in the dumps. I'm incredibly tired all the time. I wonder if this is it for my quality of life. This is where we've come. If that's the case, man, I'm not sure I want to be around to see it. I can't stand it any more. Sick is no life. I've seen enough. I've seen more than enough.

Yesterday I went to the specialist who Rav Fisher recommended to me. His name is Professor Fich, and he's the head of gastroenterology at Soroka hospital here in Be'er Sheva, where I live. He came highly recommend. I didn't actually have very high expectations, just because I already had a diagnosis, and had been through all the heavy tests, so I didn't expect much else for him to come up with. But I went anyway because I am still in strong pain, and it's really not getting much better. I am hoping I just have to keep being more patient, and this is a slow healing problem.

Anyway, professor Fich was quite respectful of the fact that I am in tremendous pain; not something to be taken for granted. Many doctors do not respect the patients pain, especially a woman's, and especially if it seems inordinate with the diagnosis staring at them in front of their eyes. He had my paperwork in front of him from my recent tests and whatnot. We talked, he examined me. He said that I have had all the tests, there are no other tests to send me for, but what he promised to do is to take on my case. That was a big deal, in my eyes. He is going to start by looking over my CT himself, with his own radiologist expert, and see if anything was missed. He instructed me to get back in touch with him on Sunday, he'll have had enough time to look over my tests by then, and if he has anything to tell me he'll know by then. I'm not expecting anything, honestly, but you never know. I think that for whatever reason ulcerative duodenitis in me is extremely painful, and it's going to be a slower healing process, and that's just how it is, and I have to just deal with it. In a way having the doctor find something else woulnd't be so great, unless it is something simple and heal-able.

This pain, though, it feels like the middle of my body is dying. I don't know how else to describe it. I don't even know what that feels like, although technically that very thing has happened to the middle of my body before, but I was in a coma, so I didn't actually feel it as it happened. Well, that's not fully true, I was in horrific pain when I had NF, but it was like an entire body pain, because, well, I was actually dying. OK, we won't go there. I know though that when I had NF I could barely move anything at all without tremendous pain all over my body. This, now, it's all belly. But wow, what belly pain it is.

And such tremendous fatigue. I feel like I need to sleep all the time, and when I look at myself in the mirror, I see someone with deep dark circles all around her eyes. I don't understand what is happening to me. I look so unwell.

I have a feeling that this chapter in my life is a very big one, and is a turning point, and not for the better. I want to be wrong about that. I want this all to heal and for me to get my energy back, and return to life as I knew it before this episode. I used to want life to return as it was before NF. Now I will be happy just to have the energy levels- and even pain levels- I had before this stomach episode (which is now about six or seven weeks). I just somehow feel that this is a big turning point, and not a good one. I fear in my inner most fears that this almost unlivable pain is my new normal. God Forbid. I have nearly dropped out of outside life, and cannot be present for most of life's joys. This is no way to live life. Please God let me heal from this. I cannot live this way. Not with pain, please God, not with this pain.

(I am doing a combination of Homeopathy, naturapathy, and Western medicine to help myself heal. You need not make suggestions. Thank you.)

Sarah Rachel Bat Tova

10 comments :

  1. I wish there was more than just thoughts, prayers and juju that I could offer you. But that's what I have - along with lots of love.

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  2. I feel so helpless. May God please listen to our prayers SOON!

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  3. I was thinking about you today and was going to check on how you're doing. This isn't the news I was hoping for. I pray the meds will begin to work and that this pain will go away.

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  4. I hope the new doctor finds something someone missed and can take away some of this pain. Keep sharing and we'll keep praying.

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  5. So hope the pain eases soon and the Head doctor can help. Keep us informed, you are always in my prayers.

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  6. I am overwhelmed by your blog, by the truths you are telling us, by the pain you are in. I pray that the doc helps you find a path out, that the ulcers do start responding to the meds you are taking, and that this is not the new norm. You are in my prayers.

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  7. Dear Sarah, You are a survivor and this too you shall survive. Keep believing that you are healing and you will be healed. You have come through so much and are an inspiration to to so many. You may never know all the people who are positively impacted by your courage and inspiration. Life is not ever easy, sometimes a lot of nasty garbage is thrown at us, and Life asks, "So, what are you going to do about this?" And it awaits an answer. There are many blessings in your life and some of them call you "Imma", some call you friend and some are random blog readers, but you have an army of "prayer warriors" helping you fight whatever may come against you. Truly believe that you will be healed. Have faith it is happening. You bring untold blessings into the lives of others and you must continue. Sending healing, loving thoughts your way and prayers to HaShem for your Refuah Sheleima. Courage, courage, dear lady.

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  8. My heart goes out to you. I understand your pain and don't know what to say. I very recently told my sister, who is having major health issues of her own -- depression and stress are major killers. You have to fight like the devil and use your inner strength. Unfortunately I was in your same situation many years ago when I was diagnosed with cancer. I was in fact, given a 2 year life expectancy. I just focused on my body -- the pain and fatigue I was in, I forced myself to channel and in my mind I waged a battle. I was determined to see my children grow up -- hopefully grandchildren. I used a lot of black humor.

    You need to have patience, try to channel your pain and fatigue another way. I know you can overcome this; but DON'T GIVE UP. If you do, the battle is over and thus ...

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  9. I'm so sorry to hear it isn't letting up, Sarah. Have your doctors made any dietary recommendations? Is the pain worse after eating dairy or anything acidic? I know it can only help a little but anything that might help is a worth looking into.

    I did some research and it certainly seems unlikely the migraine medication you are on has much to do with the gut issue. The intense level of pain you are in from the ulcers makes me think something must be exacerbating the pain and inflammation. Even if you got the ulcers from NSAIDS, the pain you are describing doesn't seem to fit plain ulcers.

    Is there any way your doc can review if there are any signs of acid or bile reflux? Although I'd expect that whatever medication you are on would be acid-reducing and would have produced some improvement by now.

    My best guess, especially since the fatigue you mention is outsize even for chronic poor sleep, is that you are in inflammation overdrive.

    Your body could possibly be so inflamed and hyper-reactive that it can't heal. Which keeps you from getting sleep, rest, any ease from the severe pain, from anything that makes you happy or improves your well-being - which makes it almost impossible to heal so the cycle reinforces itself.

    I don't have any answers, just trying to put forward some things to consider based on my own journey. Here in Africa I was sick for virtually 18 months straight because for all that time I just couldn't get over the line of health and energy that would give me the chance to heal and the original infections were resolved. My experiences pale compared to your suffering, but still mine wasn't minor. I despaired as well and it's as if the physical pain isn't enough it becomes mental as well. So I feel you. Wishing you all the best, Sarah.

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  10. Really sorry to hear that you are still in so much pain. Praying for you.

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