I wanted to take a minute and update you all on how Lizze is doing. She has decided to put her pain rehabilitation on hold. She has very personal reasons for that but basically one of her aunts is very, very ill and Lizze is really struggling with that, as we all are.
At this point in time, she’s not in the right frame of mind to take on something as intense as pain rehab.
For the record, I support this decision because she only gets one shot at this.
Right now, her place is at home and spending as much time with her aunt as God will allow.
Unfortunately, Lizze‘s is in a great deal of pain. Her current doctors don‘t seem to want to manage her medications anymore. Even worse, Lizze ran out of her fibromyalgia medication a little while ago and so she is now behind her pain, instead of in front of it.
She’s not sleeping well and if she does by chance fall asleep, she has nightmares.
I honestly don‘t know how long she can keep this up but she is determined to be their for her aunt as much as possible. Unfortunately, she very, very limited right now.
On the plus side, Lizze does have some good days where she’s able to actually walk around and participate in life. My hope is that as she is coming off her medications, she will start to feel better. The Cleveland Clinic said they believed the medications were responsible for much of her pain as well as her year long migraine.
Please keep both Lizze and her family in your thoughts and prayers during this very difficult time.
oh dear lord, my heart is breaking for Lizzie. I know exactly what she is going thru dealing without her meds. I went thru it not so long ago myself. I had 3 yrs of 8 hydrocodone plus 16mgs of dilaudud DAILY that was stopped abruptly . It was a living hell as the withdrawls were beyond words. I spent alot of time in bed or in a tub full of hot water.I had alot of various w/ds.My primary insisted I see a pain mngt specialist, as she refused to continue to prescribe any further. It took a long time to finally get one to even see me, as with the crack down on pill abuse has scared alot of doctors. Finally I was able to see one and I litterally begged him to help me get my life back and with his sympathy he agreed to take me on as his patient. I have fibro as well as extreme pelvic pain that no one seems to know the cause.
I urge her to seek either a pain mngt specialist or a new primary. Fibro is a debiltating illness, both mentally aswell as physically.
She is very blessed and fourtunate to have you in her life, as well as your children.I will continue to pray for Lizzie, you and your family.
@kathyakaNonnie thanks for the kind words of support. Lizze has been in pain management for a few years now but they wouldn’t give her anything for the pain.
@lostandtired @kathyakaNonnie
what? time for a new set of doctors, or I may be missing something.
@kathyakaNonnie she will be entering Pain Rehabilitation Program at the Cleveland Clinic in the next month or so.
@lostandtired @kathyakaNonnie i missunderstood the pain clinic in cleveland. I thought she was attending that only to bascially detox. Are they going to provide any service to help her manage her fibro?
It goes without saying that everyone is in my thoughts all the time 🙂 Like you, I am hopeful that once the “bad” medications (i.e. the ones she shouldn’t have been on…stupid neurologist) leave her system maybe that will bring her less pain and more peace. It does not surprise me in the least that :Lizze has chosen to put herself on hold and be with her aunt! She has always been family oriented and that’s a wonderful thing. Please let her know that she has my full support as well (as always), however, I do hope she starts feeling a little better soon! <3 you all.
Has Lizze tried the medication DHE? It worked wonders for my headache.
@MeaghanGood what is that and where can I get it.
@lostandtired @MeaghanGood DHE is dihydroergotamine. Lizze’s doctor should be able to prescribe it. It’s not a painkiller per se, it’s a vasal constrictor. That is, it constricts your blood vessels, which is why it’s good for migraine-type headaches.
You have to inject it and it’s extremely painful to do so — made it feel like I’d set my leg on fire. If you get some saline from the doctor, and dilute the DHE with equal parts saline, that makes it hurt a lot less.
You need to consider that Lizze has a serious OCD-like mental illness (probably in addition to major depression) that you both should take more seriously. If she had a physical illness with this much pain and disability associated, you would not dare to ignore it. “That’s alright, honey, we’ll deal with your appendicitis when it’s a little more convenient” HUH? Do your kids not need a functioning mother? Does Lizze not deserve a complete life? Is her health not an important determinant of the family’s wellbeing?
Sorry to be blunt, but you guys need an outside perspective and if her family is not saying this, they ought to be.
@dotdash someone she is very close to is dying. There isn’t much time left and she’s devastated. That is the only reason. Well, actually she can’t get in now anyways. Insurance hasn’t approved yet and the program has no openings. The soonest she could get in would be middle or end of January.
For right now though, she’s really pushed it out of her mind and is simply trying to deal with life.
I do appreciate your bluntness though. It’s just not that cut and dry.
@lostandtired @dotdash I regretted sending that post the minute I did it. Of course it’s her business and your business.
Just — for your own sakes — don’t let too much time go by. Life is so precious, and you only have so many years when your kids (and your marriage) are young.
@dotdash I would like to say that I suffered from a severe headache for 15 months and went through the same pain rehab program Lizze was referred to — and I’m with Rob on this one. You need to be totally committed to this program and it’s not the kind of thing you can expect to benefit from when you’re dealing with recent bereavement on top of it all. It’s a very intense program.
@MeaghanGood @dotdash well put. Much better than I explained it.
@lostandtired @MeaghanGood @dotdash Okay, point taken. But if you can’t work, can’t take care of your children, can’t function independently, then you are not talking about a “headache”. There seems to be a fair amount of denial going on here, at least publicly.
@dotdash@MeaghanGood What are you talking about? Who’s in denial? First off, it’s not just a headache, it’s a migraine. Secondly, she’s also dealing with what the rheumatologist calls an “aggressive” case of fibromyalgia.
What are you talking about with “serious OCD-like mental illness”? What is that and what does that have to do with anything?
Believe it or not, no one is in denial. We are very aware of the amount of pain that Lizze is in. We also are aware of the cause. That cause is two part. The first part is probably the biggest and that’s stress. The second part, is, according to the experts at the Cleveland Clinic, medication related. Her previous neurologist has her on a combination of migraine preventatives that she should never have been on in the first place. They said they have essentially caused a headache or migraine cycle. To break the cycle, the meds have to be removed.
Also, I suppose, on a more personal note. Believe it or not, some people do put others before themselves. Lizze is one of those people. Her aunt is dying of cancer and Lizze has made the choice to put on hold her treatment, so that she can take advantage of every minute she can have with her.
In my opinion, that was very courageous. She can go to treatment much more easily than she could live with herself for having missed out on those last precious moments with a loved one.
This has nothing to do with denial. It has everything to do with priorities. Lizze is very “family first”. She simply works through the pain. Sure there are many days that she is basically laid up. However, there are also days where she’s better able to cope with the pain and participate in life.
She just lost her last grandfather about a week ago and now she’s losing her aunt and very likely another family member as well. One person can only deal with so much. If she went to pain rehab now, her heart would be somewhere else.
There is never going to be the perfect time, however, there are much better times to make a move like this then when dealing with the type of grief she’s currently dealing with and will be faced with very soon.
She’s in counselling twice a week to help with all of this and as a family, we support her in every possible way.
To be completely honest, we don’t withhold much information from the public. Lizze and I have made the choice to do this because we want something positive to come from our challenges.
I’m not offended by your statements, I just don’t understand where they are coming from.
@dotdash@lostandtired I couldn’t work, couldn’t do much of anything. If I had children I wouldn’t have been able to take care of them. And all of that was pain. I just woke up one day screaming in pain with this headache and it didn’t go away for fifteen months. As soon as the pain stopped, I began functioning as I had before. Believe it or not, mysterious and purely physical illnesses that don’t show on the outside can be completely incapacitating.
It wasn’t that long ago that they suspected ulcers, epilepsy, and even tuberculosis, were “all in your head.”
@MeaghanGood Hold on; no one said anything was “all in your head”. Obviously, Lizze is in severe pain. That experience is real. Here is what I am responding to: a otherwise healthy 32-year-old woman is incapacitated by pain and fatigue with no physical cause. That is real. “Mental illness” is perhaps a crude way to put it. But whether you call it a mental illness or a neurological misfunction, you are talking about something that has incapacitated her. And she has been suffering for a long time. That is my concern. (So Meaghan, I agree totally – mysterious illnesses can be completely incapacitating — but you have to DO something about them, whether the cause is physical disease or neurological.)
I have been explicit about my respect for you, Rob. I have applauded your courage. I think you are going a great job in a nearly-impossible situation against great odds. So I do apologize if you are offended. But I think you would agree that a 32 year olds should not be incapacitated by pain. Just should not. If she had woken up screaming in sudden pain one morning (as Meaghan did) then you would do something different from what you are doing now, right? My concern is that she is like the frog in the pot with the water temperature rising to boiling too gradually to be noticed. I’m worried that you both have gotten used to the status quo.
You say you haven’t accepted it and that’s it just a matter of timing when she gets help; that’s great. So that is where that is coming from.
@dotdash @MeaghanGood no worries. I’m not upset in the slightest. You always say what you think and I respect that. You raise an interesting point about the status quo…..
Lizze and zi have said many times that we don’t know how to handle things when they are going well. You bring up a fair concern. That is something that I’m concerned about as well.
As for not accepting the program at the Cleveland Clinic, if that’s what you were referring to, we have. The problem is that there is a waiting list and the soonest possible time she can get in is still at least a month away.
Lizze would rather go and get better but right now it’s outside of her control.
@dotdash Apparently you do not know Lizze that well. First of all, I don’t know what her OCD has to do with any of this. Second of all, once Lizze gets something in her head it’s as good as done. There is no talking Lizze out of what Lizze thinks is best or what Lizze wants to do. Trust me, after knowing her for over 15 years now and trying like the dickens, it is NOT possible. Lizze is very well aware of all of her “issues,” but in the end family will ALWAYS come first.
It is true; I don’t know Lizze. She may not want to do anything about it right now; fair enough. My concern is that her life (or quality of life) not be let go so easily. I have gone through this with a relative and it isn’t easy and she will need all the encouragement she can get. It’s scary and she has to learn to distrust the pain signals her brain is sending her — that’s how it’s like OCD. So it’s great that you and Rob are on her side and her family. I would just encourage you to encourage her. She’s too young to sacrifice so much.
@dotdash you are so right. She is way too young.
@MikeNYvetteKennedy @dotdash vet you are right about Lizze. 🙂
@dotdash
I do not think this is the time for sarcasm or as you would say being blunt. Its easy to judge others when you are not in thier shoes, even with the best of intentions. You may have had valid thoughts, or not… but your presentation I find to be offensive, regardless of what anyone else has said.Im having difficulty with your authoritive comments. This family has been thru alot and you should consider that when commenting, the last thing they need is to be attacked. All im saying is try a little compassion, empathy and consideration as to the way you present your comments.
@kathyakaNonnie Well, yes, you are probably right. It’s almost never good to be blunt. As I said, I immediately wished I had not made the initial post.
I do feel enormous compassion for this whole lost and tired family — Lizze who is losing her young womanhood, the boys who have a mother in constant pain, Rob who bears an enormous burden. It was the impulse of a moment to try to jolt someone into seeing how unjust that was. But as you say, I don’t really have standing to do that; I should have smothered that impulse.
It’s hard to read the struggles of this family without wanting to do something. But one can’t always do that, of course. Of the three kinds of help I have offered (financial, advice, and words of support), I believe the words of support were the only kind that were appropriate or welcome. We are all still learning about life and the internet, after all. I count this as a lesson I’ve learned — and I do apologize to everyone.
@dotdash
Apology accepted. We all live and learn, or we should at least, and Im no exception. I thank you for taking a moment to re think what was said and I commend you for your humbleness and apology.Best wishes to you and yours.
Your wife and family and you are in my daily prayers.
@AlanaJulianaSheldahl thank you very very much.