As you know, we spent yet another day at the Cleveland Clinic this afternoon. Lizze finally got in to see their award winning Headache Clinic.
Getting to this moment seems like it took forever and a day but we finally arrived.
We we’re in the appointment for maybe 15 minutes before the doctor stopped and said,”I think it’s best that we just skip to the chase.” For the record, it’s not usually a good thing when you hear that from a doctor.
There are a ton of details but I’m going to cut to the chase as well.
Lizze is in bad shape.
Basically, the medications that her local neurologist had her on have completely screwed her body up and we’re talking bigtime screwed her body up.
She should never have been on at least 4 of her medications, especially not at the same time and they are very likely the cause of her year long migraine.
Essentially, what has happened is that Lizze‘s body now interprets everything as pain. The specialists are saying that her pain receptors have basically been rewritten by the combination of medications and the amount of time she’s been on them.
This is something that, as you know, I’ve been worried about for some time.
I didn’t think about the whole pain receptors part but I have been concerned that the medications we’re a big problem.
This isn’t Lizze‘s fault at all. She’s doing what her doctor had been telling her to do. She never once abused anything and essentially trusted her doctor. I’m actually really, really angry about that and believe me, this will be something that I will be seeking advice on. However, that’s for another day.
The best and only option Lizze has is to go through their extremely intensive, chronic pain rehabilitation program.
This program will require a 3 week admission and a huge financial, emotional, physical and logistical commitment. We will learn more details about this program and said commitments in the morning because we have to return once again for her intake evaluation.
What we do know for sure is the program runs from 8am – 5pm Monday thru Friday for three consecutive weeks.
She will safely be detoxed off the medications she’s currently on, so she can avoid any withdrawal symptoms. She will also receive physical and psychological rehabilitation as well.
They are going to help he learn to take control of her pain without needing to be so heavily, perhaps even dangerously medicated.
She will have an entire team of top tier doctors looking after every aspect of her health. Their only goal is to get Lizze her life back. Needless to say, that would be a miraculous event and one that would be a long time coming.
That’s about all we know at this point and this is where reality sorta bitchslaps us right in the kisser.
We have already agreed to this, as what other choice is there? She needs this and I will make this happen for her. The problem right now is that I have no friggin idea how we will pull this off.
The most likely scenario will be to simply commute. The word simply is probably very misleading. We will have to drive over 3 hours per day, during rush hour traffic at the cost of at least $200/wk in fuel. That doesn’t include meals. We don’t know food works yet. I would suspect that she would eat there because they are going to be likely adjusting her diet.
There’s one other small problem.
We have 3 special needs kids, 2 of which are in crisis at the moment. Gavin with his everything and Elliott with his anxiety and current hunger strike, due to his new tree nut allergy and fear of eating now.
Lizze and I are barely and I do mean barely holding it together as it is. How can we possibly take this on as well?
At the same time, how can we not take this on?
We’re only talking 3 weeks but I am willing to say, with relative certainty, that this will be the longest 3 weeks of our lives. Lizze is totally worth the effort.
I’ve already talked my parents and Lizze has spoken with hers. I told my mom that we will need any and all help possible in order to get through this. My sister commutes to work in Cleveland everyday and may be able to help with some of the transportation, as she drives burgers Cleveland Clinic on her way work.
That’s about it.
I can’t remember the last time I was this stressed out. Lizze is totally freaked out and the boys are completely overstimulated and Emmett is just beginning a new flare up and his mouth is filling up with painful sores.
God, I think you have seriously overestimated my abilities on this one. I mean, I know I’ve said that before but holy crap, I’m in so far over my head at this point.
Praying for Lizze. I've been reading your blog for awhile and my heart breaks for your family with all the struggles you face with your children and Lizze being ill on top of that. I have one special needs child and can't imagine having to care for him while being in constant pain let alone three children. I know three weeks is a long time for her to be apart from the family but if this helps her so that she is feeling better, in the long run having her healthy and not being in non stop pain is going to be the best thing for your whole family especially for her. Praying for her and your whole family
I'm so glad that Lizze is finally able to go somewhere for help! I'm praying for her and all of you. Best of luck, Lizze!
Nice to meet you Job. U must feel like that right now. It's going to be awful but its temporary vs the constant now. Imagine how much easier it will be for you when Lizzie can help. Without pain her mood will improve, less anxiety could mean she ca better control her aspergers and become more of a partner instead of part of the bigger problem. I'm sur ei sound like a Pollyanna, but there is a plan and I always feel better with a plan. The other comments say such good things about their own outcomes. You are strong and you will get through this, just like you have always done. Just imagine when you come out on the other side. I'll try and channel my positive energy to give you strength. Praying for you all.
@Mary Franzen Costello Very well spoken. Thank you. 🙂
When she gets in, tell Dr. Krause that Meaghan Good said hi.
I can't say enough good things about that program. I had a severe headache every day for fifteen months and I thought I was going to be stuck with it forever and they cured me. If this program cannot help Lizze than I don't think anything can.
@MeaghanGood Lizze is really scared about this. Any chance you could reach out to her and let her know about your experience. Pretty Please. If you want you can do so via my contact me page and I give you her emal addy if you don't have it.
Thanks you so much,…
@lostandtired Ok, sent a message with details about the program.
Lizze can do this!
Our daughter, now 15, was diagnosed with a pain amplification syndrome (reflex neurovascular dystrophy) at age 9. She was lucky, and she was diagnosed before any unnecessary procedures or surgeries or powerful drugs were prescribed. At the time she was experiencing body-wide joint pain at a 9 out of 10 level around the clock due to micro-injuries from hypermobile joints. Our daughter did all of the physical therapy and cognitive behavioral therapy to "reset" her body's pain neurology on an outpatient basis. She also went through biofeedback training to learn that she could indeed manage her response to pain without any medication whatsoever.
Bottom line: our daughter is doing great now! She's learned what can trigger a flare for her, including stress, fatigue (sound familiar 🙂 ) and low blood sugar. She does her best to try to avoid flares, but when they happen, she has the tools to manage.
When Lizze comes out the other side of treatment, it will all be worth it. It's a mind-blowing diagnosis, and like Lizze's experience, our specialist (a rheumatologist) diagnosed it in our daughter quickly. In less than 15 minutes…..
Pain is very poorly understood by many medical professionals, but when someone who knows what is presenting sees it, then real help is truly on the way.
Keep the faith!
@NewEnglandMom My trouble started on October 13, 2010 when I woke up with a terrific headache that had me screaming in pain, and it didn't go away for fifteen months, as detailed above. My ultimate diagnosis (as given by the Cleveland Clinic doctor, seven months in, after a twenty-minute consultation) was "new daily persistent headache" which still strikes me as ludicrous. It's med-speak for "SOMETHING is wrong with you that's causing terrible pain, but we have no idea what." I was quickly past caring about the label though; I no longer cared what was wrong, I just wanted it gone.
@NewEnglandMom Thank you so much. I'm so glad your daughter is doing better. 🙂
There are a lot of doctors who need to scrutinize the medications they prescribe. I've experienced times when they may waive the warnings as posted in pharmacological literature about drug interaction or adverse effects. This has happened most of the time with my autistic son Eddie. He had been given bad combinations that worsened behavior. It took me so many study nights to read about the dynamics of drugs, neuroreceptors, and basic neuropsychiatry to understand and learn the pros and cons of the medical treatments. I remember getting into a disagreement with a psychiatrist who kept assuring me that the possible interactions of two psychotropic drugs would not be a concern. I was right all along when things turned bad with the combo of an SSRI and a typical antipsychotic. A second psychiatrist who worked in the same hospital gave the same advice as the first 🙁 As you might expect…another disagreement ensued and I refused his medical advice. The place where they work is still my favorite hospital and research center and anyway, I hope they see their human error and learn from it.
It sounds like Lizze's neurologist learned from this predicament you are in. Human error happens, I try not to get upset at the person, just the lack of insight and knowledge. Learn as much as you can about the medical disorder before you make a decision to go along with doctor's orders.
Sending "HUGS" and a "GET WELL" for Lizze…. 🙂
@GildaMSanchez Just to be clear. The Cleveland Clinic was the second opinion. They are the ones that are actually helping Lizze and not just throwing more drugs at her like her original neurologist. 🙂
@lostandtired Gosh, I sure hope that the original neurologist is aware of the mistake.
@GildaMSanchez I doubt it.
You have got this!! I have seen you handle way worse! Hang in there and know Marc and I are thinking of all of you and sending our strength and prayers!! Please tell Liz I miss her and when she is better we are going to have a GIRLS day!!! Like i have always said Liz is an amazing woman!! Hang in there Liz Im so glad your getting help for all this!!! I love you!! xoxox
Headaches (some really nasty ones) daily for about 7 years now…fibro on top of that and some other health issues as well….I get why she MUST do this…you do too of course. It is a miserable thing to be sick all the time….to feel like life is just passing you by while you sit there hurting and in pain…constant pain. Neurologist needs his A** kicked, but first things first….get her well. Then go after the A**HAT! I am suppose to take care of me and Abbi…hubby is a OTR truckdriver….and I am so tired. I would imagine she is too. Thank God you are there! Some how this will happen, because as you said it has too. Hopefully your Sis can do the transport, or at least a big portion of it. Hopefully family can help with the boys, and you can do what you need to keep things going as smoothly as possible. Fact is you probably are the prime homemaker/caretaker since Lizzie has been so sick for so long. WOW! Just imagine how awesome it will be if they are truly able to help Lizzie…less pain, correct meds, and a life back. I cannot imagine how hard all of this has been on you, Rob. Taking care of the boys and Lizzie as well. Y'all will certainly be in my thoughts and prayers…really hope it works out as painlessly as possible.
um …I hope this makes sense and you can read it. lol… nasty stupid headache and fibro fog sometimes gets in the way when I am trying to say something. :/
@RhondaCat It made perfect sense. Thank you so much. You are in our thoughts and prayers as well. 🙂
You will do it. You've gotten this far and somehow God willing it will all work out. Maybe not smoothly mind you..but where there's a will, there's a way!
Yikes! But you said it first. She has got to do this. If she doesn't. then I guess she will stay sick, which I am sure she is very sick of. Have your sister take her and maybe pick her up too? Deal with the kids. See if you can snag a great friend or relative for some help in home, like stay there to cover the times when you have to work some, be with Lizzie, or whatever fire needs putting out. This is a chance to have a way more normal life for all of you, which is awesome news! The best of luck to Lizzie and the rest of you! Keep your pals informed!