We just arrived home from the Cleveland Clinic and picking up the boys. Lizze’s Endoscopy went really well. The biopsies were take and in a weird twist, Lizze remembers the procedure… 🙁
We’ll have the results back from the Celiac and H-pylori tests next week.
This will sound really weird when I say this but unfortunately, everything looked normal. In fact, it even looks as though that she doesn’t even have gastroparesis, as was previously thought.
I say unfortunately, not because I wish she had something wrong, but instead because at least we would know what was causing her problems and we could do something about it. If the test comes back positive for Celiac, we know how to address that and relieve her symptoms.
If her stomach was still full and she found more evidence of gastroparesis, we could address that and provide her with relief.
As it stands, we are left with a mystery.
Be sure to check Lizze’s blog at My Life Beyond Labels. She’ll be sharing her story there when she’s feeling better.
Thanks for all the support.
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You don’t have to explain yourself to anyone. These trolls that have attacked you aren’t doctors , or anyone of importance to your life, and they don’t deserve your time.
On another note, hope you get some answers from these tests and hang in there.
Is it possible she may have IBS. My other half has similar symptoms and has just been diagnosed. He now has to avoid certain foods other wise he ends up in so much pain. Thnking about lizzie xx
Ohhh my, lots of nasty comments Rob, it really sucks…. Please, do not let them diminish your spirit..
I tried to see the comments, but couldn’t. Happy to provide back up!
Oh my gosh, seriously. Well anyway, I just wanted to say I was sorry that it all looked normal for her at this point. I know the celiac test rarely comes back positive if it looks normal. As someone who has dealt with chronic pain (not at her level though) and gastrointestinal problems, I do recommend trying to take out foods that commonly cause inflammation and sensitivities. My migraines are food related. My other pain is best controlled by diet. I am not suggesting this is the case for her but, I didn’t know if you have ever explored it before. Let me know if you want any ideas on that.
Jharrigan So why do you keep reading and commenting? Drama… drama.. drama… get a life of your own and troll elsewhere!
Seriously, any of you migraine sufferers that happen to be judging Lizze as a drug addict, PLEASE PLEASE PLEASE research “Chiari Malformation” or “Ehlers-Danlos”. You may find an answer to your own pain. Leave Lizze’s pain and treatment up to her doctors.
fibromamaby3 No thanks needed 🙂 I totally understand all you are saying. My DH’s uncle told him that if I was so sick, I should be dead now, a few years ago. We no longer speak to him. It does make it worse, as no one understand how hard you are trying, how much you really do, how hard you fight everyday, and what an inspiration you truly are. Keep fighting the good fight, wave the middle finger to the naysayers, and tell them to piss off. You don’t need that in your life, you need support, love, and compassion. Big Hugs!!!!
Wow… all I can say is Rob and Lizze, you have my prayers. You have my positive thoughts and energy. delete the whole post and ban the naysayers and negative hate spewing rejects. As a special needs Mom, I KNOW first hand what negativity and hate can do to you. You don’t need it. You’re doing the best you can. Don’t let others tell you what’s right and what’s wrong. Do what’s best for YOUR family. You know your situation. These other people – family or ex-family or not – do not know what you deal with on the day to day.
KeelyCorinneMiller Thank you. Very few realize how lonely it is being chronically ill. Then to be attacked in the name of “concern”…it just makes everything a little bit worse, ya know? So thank you again for understanding, for not judging and for defending me. *hugs*
Ok wow your rude… unless you know specifically what pain mes she took while pregnant then keep your mouth shut about that. I took migraine meds while pregnant….Tylenol based ones. Non narcotic meds…95% of the meds I take for my headaches are non narcotic. I only ever get narcotics if I go get a shot at the er. So unless you’ve been rifling through their medicine cabinet you have zero clue what’s going on
Well if she DOES have Celiac Disease (or perhaps like me, has Non-Celiac Gluten-Intolerance, which is a VERY real thing that can only be “self-diagnosed” by following a gluten-free diet), my blog is called Celiacsquirrel.com. Right now, I primarily blog about Down syndrome & autism resources available to Massachusetts parents, but my original intent was to create a blog that contained Gluten-Free, Dairy-Free, Soy-Free recipes (my son is intolerant to casein and soy as well). That will eventually happen, so perhaps MY blog will eventually be a resource for your family the same way YOUR blog has been for mine!
Jharrigan lostandtired AngelaMcDonough concernedmom MikeNYvetteKennedy misswendiminoregon
1) The reason I sleep so much is because I have something called idiopathic hypersomnia. Which amounts to my body needs 12+ hours of sleep in a 24 hour period whereas everyone else can get by with 6-8 hours. I’ve been tested. It’s been proven.
2) Any and all medications I took during my pregnancies were prescribed by one doctor and one doctor only, my high risk OB.
3) I use one pharmacy, the same one I’ve used for the past 10 years. While you are *technically* correct that the Cleveland Clinic doesn’t like my current migraine medications you are wrong when you start assuming that it was about pain medications. Their issue is the combination of preventative medications I am on because they have rewritten my pain receptors. (Now this is the point where you say I’m making excuses but the fact of the matter is that I was there…moving on.)
4) “3 of the diagnoses you attribute to her are now gone” is incorrect. My endoscopy was for 4 reasons: keep an eye on my reflux (I’m doing okay, thanks for your concern.), test for Celiac, h-pilori and do the first of 2 tests for gastroparesis. We don’t have the results of the Celiac or h-pilori test so those aren’t “gone”. I have my gastric emptying test on September 30th, which as KeelyCorinneMiller stated, will be the defining factor in whether or not I have gastroparesis. So, again, NOTHING is “now gone”.
5) The Cleveland Clinic NEVER wanted me in DRUG rehab. They want me in PAIN MANAGEMENT rehab. Two very different things.
6) While I will not deny that I often post that life is hard etc, that isn’t all that I post by a long shot.
7) My hot flashes, night sweats etc are due to menopause as AngelaMcDonough stated. Much like with my other diagnoses my OB/GYN-Endocrinologist at the Cleveland Clinic has run all of the tests and ruled out everything except menopause. Much like AngelaMcDonough I was thrown into early menopause after my hysterectomy 2 years ago. So, sorry, but those signs and symptoms have nothing to do with addiction.
8) The Cleveland Clinic NEVER said I was an addict. Oops.
9) One last thing I want to say, it was mentioned that I have “PTSD”. Again, I’ve been tested and diagnosed by various different therapists, psychologists etc. I have PTSD because of the domestic violence (physical, sexual, emotional and psychological) I experienced in my first marriage from my ex-husband and his parents.
The ONLY diagnoses I have that are undetermined at this point are the Celiac, h-pilori and gastroparesis. Everything else has been properly diagnosed including my Fibromyalgia by the proper specialists and even diagnosed through second opinions in some cases. Just to cover all my bases and answer any unasked questions.
lostandtired AngelaMcDonough it was for the other guy i think It was a family memeber of your wifes they were defending her but the post isnt showing on here is why i thought it was directly send to me
Rob, the only way your wife can be truly ruled out for Gastroparesis is a Gastric Emptying Scan Test. Has she had one of those? My daughter and I have Gastroparesis and we were diagnosed via Gastric Emptying Scan Test. Scopes only can see the visible physical aspect of the intestinal system. Sounds like she needs to see a motility GI specialist and not a regular GI. Not sure how the rest of her system is working but a motility GI specialist is probably her best bet.
I am sorry about the naysayers and the accusal of narcotic drugs. Those people have probably never gone what your wife is going through. First of all, medicaid, does not pay for narcotics, unless you see a pain specialist, then you must have documented proof from other specialists supporting you need for them, then they run even more tests, and they may still not approve them for you, and even if they do, there is a big chance that Medicaid will still deny the approval. I know this for a fact, because I have progressive MS, severe osteoarthritis, severe neuropathy, severe migraines, optic neuritis, and autonomic dysfunction, just to name a few, as our geneticist feels my children and I have Mitochondrial Disease to boot, and only when I am admitted to the hospital, can I get my pain treated. I am on Medicaid, my specialists have told my insurance that I need to be on Morphine patches, and Medicaid still denied it. I can barely walk or move around and yet, I am not ill enough in Medicaids eyes to qualify for pain meds.
A lot of people are clueless about Medicaids rules and just assume if you or your family are on medicaid that you are slacker deadbeats, looking for hand out, and are on drugs. They will never understand, as they choose not to educate themselves, and believe the stereotypes. They see only what they want to see. Not all of us are the Medicaid stereotype. My family was considered upper middle class, until I became disable, and had children with disabilities. It can happen to anyone. Most of the middle class is one paycheck, lost job, or disability away from being the poor.
I pray they find a answer and the proper treatment for your wife and Gavin. Maybe genetic testing is where your answers lie. Big Hugs from one that truly understands.
AngelaMcDonough who was the email from?
I just got emails from someone on this blog and not sure why cause i aint getting the posts on here I think it was ment for the jerk who is doing the bashing at least i hope it was
Jharrigan concernedmom misswendiminoregon liverebo Lizze needed pain rehab, not drug rehab. She’s not an addict and when they talked about detoxing her they were referring to removing all her meds slowly and in a controlled manner. That’s the medically sound way to do it. They didn’t want her pain to get worse because they removed her meds cold turkey.
This has absolutely nothing to do with drug addiction. I can’t be anymore clear than that.
Jharrigan deleted_21100283_lkresack Ok See I wasn’t going to get involved and I really try not to fight on my FAMILY’s blog as this blog is for educational purposes and not a battleground, however, I feel that someone needs a little education. First of all, people who speak about things they have no knowledge of just prove how ignorant they truly are. Second of all, do you know the meaning of addiction? If my SISTER Lizze was actually “addicted” to her pain medications she would be taking them ALL the time, which she doesn’t. Lizze doesn’t take her pain medications until her pain gets to the point that it is debilitating to her (Do you know what that word means or should I try to use smaller ones?). Therefore, your “addiction” theory is moot. I wouldn’t expect you to know how often Lizze actually takes her medications, however, b/c you don’t know this family personally, which brings me to my third point. One shouldn’t judge people they don’t know. You may read Rob and Lizze’s blogs religiously, but that doesn’t mean you know them. It only knows you know what they choose to share. It’s easy to judge without knowing all the facts. Your comment(s) are completely uncalled for, unsupported and ridiculous. They show what kind of person you are and I have to say that I feel so sorry for you. Sorry for the fact that you think you’re so great and wonderful that you can sit and pass judgement on others. It must be hard being so perfect. How do you do it?!? I must know your secret. My final point is this…I work in the medical field. Doctors are VERY intelligent when it comes to their patients and they are very meticulous when it comes to keeping track of what medications they are taking and just how much they are taking of them. THEREFORE, IF Lizze truly had an “addiction” to these medications the doctors wouldn’t keep running tests to try and find out the source of her pain…they would be cutting her off of all the “addictive” meds and refuse to see her any longer. Eventually she would be black listed and her name would be in a database where she would no longer be able to receive any addictive type of meds. If the doctors (and we are speaking about professionals here remember) didn’t really think there was any kind of medical problem wrong with my SISTER then you think they would run tests? Here’s an idea…why don’t you just stick with reading gossip blogs about Miley Cyrus or Britney Spears where you can pass all the judgement you want….but your ignorance is not wanted here. Thank you and goodnight.
Jharrigan lkresack They were talking about “pain” rehab not “drug” rehab. The specific concern was the combination preventatives that were considered to be the problem.
I think when i hit reply you were on 1 of the other posts and it replied to all not sure
Jharrigan AngelaMcDonough lkresack concernedmom I have broken tail bone that never healed properly and am in pain most of the time if i asked for or wanted them my doc would give me any pain meds i needed I have to really really be hurting to the point that i can not get up to ask for them that might happen 2 or 3 times a yr the rest of the time i tough it out but some people cant do that they dont have as high a Tolerance to pain I have a to say I think what goes on in there house is not your biz and maybe you should just stay out of it Rob is just chronicling what its like to have multiple children with ASD i have 2 sons on the spectrum myself
Ok Rob – can you settle this? I don’t want to fight with your readers. I was really trying to help by suggesting the meds as the cause. Does lizzie in fact take narcotics? or are they just plain old meds that are non-habit forming.
lkresack I’m not suggesting that Lizzie stop taking her anti-depressants. I am saying she should stop taking the opiates/narcotics!!! Two totally different things. I actually do have empathy for people with mental health issues and Lizzie has her fair share. But she is making them worse with the drugs. She needs more therapy but what she needs first and foremost is to detox from them. All of these other maladies (or at least most) will vanish. She will become healthy and stop living like she’s 70 years old.
AngelaMcDonough Jharrigan lkresack concernedmom True chronic pain suffers (as opposed to drug seekers) would know that narcotics MAKE IT WORSE. That’s where the pain comes from!!!!!!! No legitimate doctor would prescribe narcotics to a chronic pair sufferer because they are addictive and they do not work. Lizzie has probably seen her fair share of shitty docs. I’m not blaming her. But the truth is what it is. she needs rehab and help.
lkresack my “Sole” purpose is not to insult anyone. Tell me – lkresack do you recall the blog where rob detailed the doctors account of why lizzie should be in rehab? Do you agree that she just MIGHT have a little problem with the narcotics she takes daily? How is this trolling?? we are truly CONCERNED and trying to help. All they BOTH do is complain about how shitty their lives are when THEY ARE THE PROBLEM. And it has nothing to do with special needs parenting. I know some parents who have NT kids who are addicted to pills too. And they are losers also. This family will NEVER become better/stronger with one parent an addict. And for Rob to say he can’t get a job (and constantly ask for $$) so that he can be there for his medically fragile wife is insulting. Just think about it. What it it was crack she took? WOuld you be so kind and generous and supportive then?
IF opiates were causing such issues, guess what??? The endoscopy would have STILL shown lack of gastric emptying. It doesn’t matter the cause, as the effect would be the same. If they didn’t find any contents it’s because she doesn’t have the issue at all- whether gastroparesis or opiate induced. And FYI, let me tell you something- I have been having migraines for a year, and I get a 2 to 3 week break between them- it is so freaking miserable. Especially when you have multiple special needs kids who need and deserve your attention. News flash…..migraine meds? They’re NOT narcotics! They can be called or faxed into a pharmacy as they are not controlled substances.
Jharrigan btw menopause can cause those symptoms too I know this as fact because in feb i was medically forced into menopause with a hysterectomy and have a few of them myself Panic attacks hot flashes night sweats dizziness and nausea AND I AM AT THE MOMENT NOT ON ANYTHING but i diabetes meds
lostandtired misswendiminoregon concernedmom Jharrigan ROB – THE DOCTORS TOLD YOU LIZZIE IS AN ADDICT!!!!! they told you – in no uncertain terms, that she needs to be admitted to a clinic for rehab and to detox, This would be a mutiweek process. I am not passing judgement on Lizzie’s intentions re: her addiction. Nor her character. It can happen to anyone. But she should really get help. Addiction can only really end two ways Rob. I honestly hope for her sake she is reading these comments and can recognize that she needs a facility to help her. Maybe then she could actually do something with her life. The funny thing is: Lizzie is a FAR superior writer than you. I find her blog to be well-written and her commentary is spot on, way more so than you. She should have the writing career. And maybe she could if she could get some help. Just sad. If you were half the hero you claimed to be you would have helped her and insisted she do the rehab. That’s what a real caring husband would have done.
lkresack Sounds like you fit YOUR definition of “troll” as well. You are insulting and belittling me!
I started reading this blog years ago because I work with special needs children. I have continued to read it because of my concern for the kids in this family.
I rarely comment, because I am attacked every time.
lkresack I rarely comment on anything other then my on FB and friends blogs So i am not a troll but i saw another autism parent WHO IS ON MY FRIENDS LIST being attacked and asked you nicely to leave him alone
Jharrigan lkresack concernedmom Do you have any ideal what its like to live in chronic pain I do Its not fun you do not have a personal stake in this family and i have not see them ask you for anything other then to leave them alone so why not be a nice guy and leave them be
misswendiminoregon concernedmom Jharrigan I’m going to ask you nicely to please just refrain from reading this blog. You clearly don’t find anything of value here or for that matter have anything of value to contribute. I have never banned anyone and I don’t delete comments. If I had deleted a comment, it would reflect that the comment was deleted.
Accusing my wife of being an addict is a pretty arrogant thing. You have no personal knowledge of our lives, aside from what you read.
Everything I write here is 100% accurate at the time of writing. Doctors can change their diagnoses as symptoms change. It’s easy to sit at a computer screen and pretend to know better when you can’t possibly understand whats going on.
This site is here to share our story and help people. If you don’t agree with what you read, that’s perfectly okay. Simply stop reading. Exercise some self-control and go somewhere else. Why do you keep coming back for more? Why go you feel the need to make such hateful and arrogant comments?
You have been making the exact same types of comments since you first began reading. I don’t expect you to understand our lives. I do however ask that you please refrain from leaving comments that don’t contribute in a positive way.
As far as all the other utterly ridiculous things you are saying, you are entitled to your opinion. Just remember that your opinion and the facts aren’t the same thing. I wish you the very best and I again ask that you just go away if you don’t have anything to contribute, in a positive manner. I’m not a fan of censorship at all but your comments serve no purpose and I will begin to consider them spam.
Jharrigan lkresack concernedmom I have been called a troll for suggesting the same thing. I read back through Lizzie’s blog, and she took pain meds while pregnant with the youngest child as well. (Which leads me to believe this has been going on for a long, long time) That was very troubling to me. I have fostered a child with FAS/ Drug affected disorder, and it is not pretty.
misswendiminoregon I think Rob thinks you are part of Lizzie’s ex-family. Maybe her ex sister in law or something. I want to tell him that you are waaaay to well-spoken (written) to be involved in that family.
I am/was concernedmom. When you accused me of being “someone you know” I logged in with my google account to sooth your paranoia.
misswendiminoregon Jharrigan Thank you!! I am happy that at least a few people can see that I am not a troll, but a person with a legitimate argument, btw – I have told Rob this like a year ago, but he always just throws up the same defense – that I’m a troll/asshole.
lkresack No, concernedmom and I are not the same person. Here’s the thing: I would love to be sympathetic to Rob and his family. I am sympathetic to many families in similar situations. I give money, etc. But he is just ridiculous with the medical issues and the everything else he tries to pass off as his sorry lot in life.
No matter how he tries to deny it (and I understand why he would) Lizzie is addicted to drugs, She is a drug addict, I can totally understand how it happened – I’m not calling her a crack whore. What I am saying is that she takes a lot of very addictive medicaton, for extended periods of time, and she is really messed up because of it. If she WERE doing crack, NO ONE on this blog would be sending donations or “prayers”. and CPS would have been called in much sooner. But opiates are just as bad. She needs rehab, She had a chance at rehab but the logistics made it impossible, I am being generous there, I actually think she just can’t face it yet. But her doctors were clear. Her “2 year migraine” could be gone if she could stop abusing the drugs,
The truth is, I feel sorry for her, She should get help. She should go to rehab and get off of those horrible meds so that her kids can feel like they have a mother, She sleeps all day and comes out only after they go to bed at night? To watch Netflix? The solution is not easy, rehab would be hard, But Lizzie knows why it is she takes the pills, Maybe it;s the depressions, maybe the “PTSD” – but most of her medical problems could be solved,
Oh, also HOT FLASHES are a product of addiction. Headaches too. In fact – any reputable headache clinic (and I’ve been to many) wont even prescribe narcotics because they all know it makes the headaches wORSe.
Rob you think you are defending her, but you are just hiding and making the problem worse. By feeding her these diagnoses after diagnosis you are enabling her to live this way, Take her to get real help, DETOX. Do the rehab plan that the headache doctors laid out.
Sympathy can only take you so far. Sooner or later all of the people on this blog are going to realize that YOU (and lizzie) are at the root of all of these “problems”. And the next call to CPS wont be so absurd, (note: I’m not threatening, I’m just saying that you won’t be able to dodge a bullet that’s actually true).
Jharrigan I have liked this comment 3 times, but it keeps disappearing.
Rob states that it’s a mystery…. But gets mad and calls you a twit when you offer a valid solution to his mystery.
I am not trolling!!! And i’m not an asshole. What I’m saying has merit and even if you don’t agree with the way I interpret your lifestyle, you have to understand that medically speaking (as you seem to be so fond of medical issues) the facts are the facts. If Lizzie could complete rehab and get off of these pills, her life would have a way better quality. She would be sick far less and be able to participate in more of your life. I generally don’t like you – but I can comment on what I feel is a gross waste of everyones time and money. Most of all hers.
I’m just gonna add that it seems as though 3 of the diagnosis you attribute to her are now gone. You really should get her help.
I’m not trying to be judgemental, but it seems as though if the doctors can’t find anything wrong after all these specialists and tests, maybe there’s nothing wrong.
Has your wife been evaluated by a psychiatrist. I know you’ve written many times that she sleeps a lot. That’s a typical sign of depression, along with unsubstantiated ailments.
Jharrigan Bingo!!!!
Jharrigan I’m going to give you the benefit of the doubt and roll with you aren’t being a judgemental twit with this comment (as you probably are). My patience with trolls is running very thin, especially when judgemental assholes attack my wife.
If anyone has a problem with my approach here, just click on the name and read their previous comments.
Oh, Hey, you know what causes similar symptoms? (Ie nausea, vomiting and slow stomach?” Opiates! If lizzie is taking any opiate based meds (and odds are she probably is) that might be the cause of her symptoms. But you knew that already right?