Back to ER again
 

Really sick; can't get out of bed, move, sleeping all the time. Missed my appt with neuro yesterday becuase medical taxi computer system went down and they lost all thier appts. Coudln't freaking believe it. Called him and told him how bad off I was, he sent me to hospital. CAlled ambulance, heart rate was 140 when ambulance got there and O2 sats were low. Hospital not too helpful but at least this one herad of the disease.

They did spirometry? kind of pulmonary test, just that one, and sent me home based solely on that. They said it's a good test and can predict if you are going to crash or not. Whole time in ER I couldn't walk unassisted, couldn't get my shirt off on my own for johnnie, etc. They did not do any blood gases. Some blood work but no idea what, urine test. Had me count only got to ten. Could not squeeze fingers well, etc. When they d/c me they told me to go to waiting room well it was a loooong walk. I had no idea. I thought I was going to collapse. My legs were full on shaking, kept falling into wall, wobbling, almost in tears, thought I'd just sit on the floor, long hall and no one around as it was 3 am. When I got near the end no one offered me help; they must have thought I was a drunk. It took me forever to reach the smelly couch in the waiting room. I thought, this is my LOWEST POINT EVER. Not one person offered me assistance though clearly I could barely walk.


The ER gave me a month supply of Mestinon, 3 times a day. Now if it helps you in the short run, do you take it before bed? What would be the benefit of taking it while you are sleeping? I took one before bed and two today and no improvement at all. I am TOASTED. I can't stay awake, still every part of my body is extremely weak beyond belief and all I want to do is sleep. I don't have the strength to open a water bottle or lift my laptop.

Is it every 8 hours if 3 times a day? Or 3 times throughout your waking hours? I have to reschedule with neuro but also got an appt with MDA clinic ready to be scheduled now, I think. I think my neuro is sending them all his records so I'll be good to go. He is moving to CA so I need to find all new providers, and it looks like a good place at New Britain Specialty Hospital with a whole MG clinic, 2 docs and services there.


I am so discouraged that the ERs are clueless. I feel unsafe and hopeless that I have nowhere to turn when in bad shape. The ambulance gave me oxygen and it helped IMMENSELY. I wish I had that at home. I asked for it in the ER and they never got around to giving it to me. Does it help any of you? I wonder if I can get that at home. What a huge help that was.


No one in the ambulance had ever heard of MG, neuro in the hospital had but they said if they admitted me all they could do was give me a dose of IVIG and that was it. They said once I just rested the weakness would resolve. What? All I do is rest. It doesn't resolve with rest at all!!! What is wrong with me? I'm always weak and can't even get up alone. I have IVIG Mon and Tues but we are expecting another huge storm Tuesday. I missed it this week because I was far too weak to travel to get there. That sucks, I never ever miss IVIG.


This is scary....no one gets it. I even brought in an article on MG that Annie posted and they all read it and said it was very helpful.

So that's what's up. I'm completely weak today, in pain, exhausted. I can count to ten. Need to call neuro and reschedule on Monday. I was up all night in ER so slept all day and I've been ready to go back to sleep ever since I woke up. Any help about the medication or insight would be much appreciated.

Wow, Tracy. No arterial blood gas? They didn't admit you? They really don't know what they are doing. And rest some and you'll be fine? Yeah, right.

Do you mind me asking where you live? Is it CT? Maybe someone can refer you to a neuro who does know what's up.

I don't feel right giving any drug advice. What dose of Mestinon did they say to take? 30 mg.? 60?

There are two things to adjust with Mestinon: Dose amount and dose frequency. Since they said to only take it three times a day, if you take it more often, you'll run out sooner than one month. You need to call your neuro and have him direct you! If 60 mg. of Mestinon is like taking water, then he needs to discuss taking it every four hours four times a day or more, for example. Dosing is different for everyone. And more (a higher dose) is not always better.

Until you get used to the drug, you may need to be on smaller doses but maybe more frequently. Again, don't make changes without speaking to your neuro.

I'm sorry it went so bad again. I think a conversation with someone in charge over there would be a good idea. Maybe give them some info on MG. Sometimes that may not go well, though but you do need care that is better than what you got. And IVIG is NOT what is usually given in a crisis or near crisis. It's oxygen, bi-pap or plasmapheresis. IVIG is sometimes given but not usually due to the chance of side effects.

Taking Mestinon before bedtime is a good idea. If you are tolerating it fine, then it will help recover some muscle weakness. I wake up in the middle of the night to take it. My body "knows" when it runs out. ;)

Are you seeing your neuro on Monday? They can squeeze you in, you know. You have to grease the wheels and make it happen. Like I said before, you have to not do anything at all until you get more help. It may take awhile for your body to improve on Mestinon. It's been a long time since you had sufficient amounts of acetylcholine.

Don't wait for people in an ER to offer you anything. You have to DEMAND a wheelchair and someone to wheel you around. You have to DEMAND oxygen. How low was your O2? You seriously have to be assertive about your care. Really sad but true. Say "I can't walk." Say "I can't breathe." You have to define your situation in very stark, simple terms.

I think you need to look at home IVIG. Maybe subcutaneous IVIG that you can do yourself. A nurse comes to your home to show you how to do it. Then you won't have to go out!

And you may be so bad off that they have to consider immunosuppression like Cellcept or Imuran.

I wish I could do more for you. It's very scary to be so bad off. You have to stop doing anything. I hope you get better on the Mestinon.

Annie

Hey Tracy- sorry your dealing with this part of your MG. For some patients who have a more difficult strain of mg to treat, this road is something often traveled. Last year this was every month for me- and I was at UNC- dr. Howard works here and is the leading MG speacialist. He would not agree to see me because I was 17 and he works with only adults.

The oxygen does help me- I don't know if it's because of nervousness due to everything going on or what.


If you rest all day tomorrow too- go back to the er or make sure your neuro knows. Even though it is a Saturday. This could mean your body is not resting up adequately and is turning towards a crisis, espspecially if u can only count a little past 10. My neuro said to go to the er if it was below 20.



Good luck and please dont hesitate to ask questions about going in. I'll check back reguraly today to make sure you have no questions or if u do I'll answer them to the best of my ability:) (just because I went to the er 6+ times in less than 4 months due to exaturbations I had to have help of plasmaphereisis to get stronger.


-Tyson

I just had a discussion with my husband about what it means "life threatening"

I explained to him that the whole idea of modern medicine is to be able to recognize signs that put someone in danger. you don't wait until they actually die or have irreversible damage. you can rely on historical controls who were not treated and what their outcome was. and any situation in which there is a chance of mortality of significant morbidity which is above 10% requires emergent intervention. this is what ERs are for!

Also, each sub-specialty has its own data base and knowledge. I reminded him of how one of my patients came to the ER with fever, and I had to call the resident a few times to make him understand that for a patient with chronic leukemia this is an EMERGENCY. before I called they treated him as just another patient with fever, even though they knew his medical history and saw the results of his blood tests. He was hemodynamically stable, alert and oriented so not someone they triaged on the top of their list. they didn't realize that such an immunocompromised patient could crash within hours if not treated adequately, even if he lacks any ominous signs of a severe infection.

Significant respiratory difficulties in a patient with MG are a similar emergency and sending a patient home like that, without making sure that they have adequate follow-up and care is irresponsible and shows of lack of knowledge of those involved. I am not blaming the ER residents for not knowing enough about a rare illness they don't often see, but the neurologist should have been much more involved, asking for the results of tests and making sure that proper management is instituted. just like I was involved with my patient.

I think you need to urgently find a neuorlogist who has a good understanding of this illness, and sees it as his responsibility to ensure your care in the ER, and not leave it up to them to make such decisions. It may also be a good idea to find a pulmonologist with a good understanding in neuromuscular diseases. the criteria used to assess respiratory status in the common disease they see in the ER on a daily basis (such as asthma, pneumonia, COPD) are very different then those used to assess the respiratory status of patients with neuromuscular diseases.

when I was a medical resident I was scolded by the attending in the ICU for failing to recognize the respiratory deterioration of a patient with neuromuscular disease. He explained to me that such patients may not look distressed and can have normal values of blood gases and even some respiratory parameters until very late in the game. and it is imperative to repeatedly measure their respiratory reserve.

(I did not know then that this physician, and this knowledge will someday save my life. but, this is another story).

bottom line, from what you say, it does not seem you should trust their medical judgement at this point. giving advice like that in an internet forum is very hard, and I may be wrong, but I think you have to keep on fighting to be seen by someone who really knows this illness and its various manifestations.

Tracy, I hope you are feeling better soon.

By the time I was prescribed Mestinon I was in the same shape as you, sleeping most of the day and barely able to move...it took about a week to see improvement from the Mestinon, but once it started helping the change was amazing and at some point after I improved, I had to decrease my initial dose. I hope the Mestinon helps soon, but be patient, I suspect that Mestinon takes a little longer to start helping when your symptoms are severe.

And always remember that too much Mestinon is just as bad (worse in my opinion) that not enough.

Definitely talk to your doctor about dosage.

Thinking of you.:hug:

Tracy,

You need to go back to the ER. You cannot be alone right now. Do not let them brush you off. Ask for a patient advocate...As for the Mestinon, it's very easy to OD on it, but I think your best bet is to get a pill cutter and try adding a quarter of a pill an hour until you start to feel a little relief. Maybe up to a total of two pills (one full, and a quarter, plus a quarter an hour later) A quarter of a pill makes a huuuuge difference for me. I take 2 timespan mestinons about 7-8 hours apart, first one upon waking. I supplement with a quarter (lately I'm up to a half pill every hour to 30 minutes) of the quick release (60mg tabs) whenever the weakness sets in throughout...My normal weakness is upon exertion, so if I feel the heaviness start to set in while resting I know it's time for a boost. I have taken control of my dosing of my quick release because I know what overdosing feels like (qick heaviness through whole body within 20 minutes of taking pills, with excess mucus in chest and saliva in mouth) moving helps it fade if you do overdo it, or lots of water. Please get yourself help...Also do you have someone that can call your ins and ask for someone that can act as a contact...(they will help you get fast approval for referrals, override for coverage to stay in the hospital, rides social services help...I was set up with one when I was diagnosed. My ins company called and offered me one...I cant remember what it's called, but they are your front line help in dealing with the red tape thru your ins co.) I hope this finds you strong. my email is sugrkiss@hotmail.com and I can give you my number if you need ot talk.

Jessica

Wow, thanks everyone....I'm pretty much still in the same shape, can count to 10 or 11, but now I can hold my right arm up for a while and close my right hand all the way a time or two before it tires. That's about it. I slept until 6:30 pm and thought I was waking up really early and it wasn't light out yet.

The one thing that helped so much was the oxygen in the ambulance, I asked for it in the ER and said I couldn't breathe but she never got around to getting it for me. That walk out to the waiting room about near killed me. I'd have asked for a wheelchair but by the time I'd rounded the corner and saw the long hallway, I was about halfway in between, so I just kept going. When I got home and got out of the truck my legs just gave right out and I fell right into the snow.

I guess I was hoping the Mestonin was miraculously going to kick right in, but no so. Still exhausting to type, walk down stairs, still off balance, just a little increased strength in my right arm. I'm relieved to hear it can take a while.

I woke up many. many times during the night unable to breathe; it felt like a sleep apnea thing and was very scary and much more than I normally have. What do you make of that? Also woke up with drooling and mouth full of saliva. The sheer number of times I woke up not breathing scared me a lot.

I don't know what to do. Do I hospital hop?

Yeah, hop to a GOOD hospital but do it via an ambulance. They will give you O2 in the ambulance and then continue that into the hospital. Plus, they will start an IV line in case then need to do the IVIG you didn't get this past week.

You can't drive. Period. If your health ins. pays for an ambulance, just dial 911. That may be the only way they take you seriously.

They can call your neuro from the hospital. AND you can go over the fact that Mestinon isn't quite working yet and that you need more help.

Ditto on what everyone said.

They also need to monitor your heart and O2 saturation, possibly overnight. I will bet you money that your O2 saturation is dropping while you sleep. That is a DANGEROUS situation if it drops too low. Mine dropped to 66% during my crisis and I only slept for about a half an hour when they checked it during a "mini sleep study." Hypoxemia (low O2) literally damages tissues like your brain and heart.

And get those arterial blood gases (ABG) and FULL pulmonary function tests done, with MIP and MEP!!! But only after you feel better because just doing those tests (PFT's did, not ABG's!) during my MG crisis wiped me out. And breathing in or out hard can stress out your heart. A lack of oxygen is really hard on the brain and heart.

I hope you will get help. They need to admit you and take care of you until you are BETTER. This is such stupid doctoring I can hardly believe it.

Hang in there!!! You WILL get better with the right help.

:hug:
Annie

Tracy,

I hope by now you' re on your way back to the ER! Maybe then you will be able to get a better handle on your Mestinon dose.

Hope things get figured out soon!

Rachel

NO I'm not on my way, I think my husband will kill me if I ask him to take me. I should have called the damned neurologist before it got too late. I have IVIG Mon and Tues so it's just one more day to get through until that....I guess I can call neuro but it's almost midnight.

So, I guess if you stop breathing in the middle of the night, your husband will be so glad he didn't take you in earlier. :rolleyes:

I do understand your situation and only you can decide what you can do or not. I hope you were exaggerating when you said "my husband will kill me."

All I can say is make sure you don't do anything in the meantime. Sometimes it takes an extreme situation for an MGer to "get it." Nothing is more important than getting help. Not a neuro's schedule, the time of day, a husband's unwillingness to help or the alignment of the planets.

Sorry, I am simply concerned that you might be ignoring what you need in deference to what everyone else needs.

Let us know how things go.

Annie

Well, I called my neuro at 2 am. He said go to the ER. He was upset the other ER hadn't admitted me and instructed me to go to another one. My husband drove me. I was there from 3 am until noon today. I had a lot of tests. At long last the neurologist came in. He said I "showed no manifestations of Myasthenia Gravis" and he completely understood why Hartford Hospital sent me home two days ago. He said they had no reason to admit me and they were sending me home. I told him my neuro wanted him to call him and he said "I'll send him a letter." I'd explained my neuro wanted me admitted to have my Mestinon dosage titrated and to get some IVIG.

I was thoroughly disgusted. He asked about my neuro, said he'd never heard of him and he thought he'd heard of everyone. I said he mostly treats Chronic Lyme but that he was brilliant and had diagnosed this and small fiber neuropathy in me. Oh boy, I opened the Chronic Lyme can of worms at a hospital that doesn't believe in it. Then a line of questioning about who diagnosed me with Chronic Lyme, when, all the doctor's I'd seen for it, if I'd been on IV antibiotics....if you aren't familiar with this, it is a HUGE political hotspot. I was at a hospital that has several of "anti Christ" doctors in the Chronic Lyme bloodbath.

So frankly, I think he was done with me as soon as he heard my neuro was treating me for Chronic Lyme. He refused to even call him.

They did do arterial blood gases but I have no idea what the results of any of my tests were, they just said everything was fine. The only thing I managed to get was my spirometry or Vital Capacity Function, which was 2.5. The Pulmonary Therapist said it was low. Evidently they didn't think so.

That's 3 ERs in a week. I think I'm done.

Tracy,

reading your post made me very sad.

I tried to think about it as a physician, and I thought that I really don't know what is going on. you have many different problems. all not very common and require a very caring and ready to think out of the box physician that will be ready to put everything together. I have very sparse information so could clearly not do that. At the most I could give you emotional support and suggest what I have suggested and could be right or wrong in what I say.

I then read it as a patient who has had similar experiences. who has encountered the more arrogant members of my profession. those who knew they have a better insight then me into my illness. those that knew I could not have a "real" illness. those who thought that what they have not seen, read about or understand could not exist. those who despite piling evidence of objective tests, kept on thinking what they thought.

even, recently, I had a very "nice" encounter with a young and enthusiastic neurologist, who had no doubt that I have severe generalized MG requiring treatment and knew exactly how he should treat me. all this was until he realized that I was correct when I told him that I have a very rare and unusual form of this illness, and unusual responses to commonly used treatments. my "theories" regarding the cause of this, did not interest him at all. he knew that as he has never seen something like that, it could not exist. he knew it was impossible for someone to go into acute respiratory failure in such a way. so it just couldn't be.

modern medicine has unfortunately become a conglomerate of Procrustean beds in which you either fit or you are forced to fit. If you have a rare variant of MG then you have to make it be as it should, if you want to be taken seriously and receive even proper supportive treatment.

the other option is to gradually find those physicians that are capable of truly understanding the limitations of medicine, and knowing that what they have not seen or has not been described (yet) in the medical literature, does exist. those who are curious enough to try and understand the seemingly "unexplained", and there are physicians like that. (sounds like your neuorlogist may be one of them, and I can now understand why you stick with him and why he was not more assertive with the ER docs).

you need help and I am sure you will eventually get it, but you have to keep on trusting yourself, (which is very hard when you are made to doubt yourself time and again). you also need to discuss what has happened with your neurologist and explain to him that going to the ER is not a possible solution as it just leads to more distress and nothing good comes out of it.

alice

Tracy, I hardly know what to say. I am again sorry that you were treated poorly.

No matter how badly a doctor behaves, I don't believe they deserve the title of an "anti-Christ" doctor, whatever that means.

I do know there are many doctors who don't "believe" in Lyme disease. Maybe "anti-Lyme" doctor is more appropriate. I still don't like labels because that's how you got to be treated the way you were.

Prejudice is everywhere, unfortunately. It has no place in medicine. Only logic, facts and doing everything to help a patient should come into play. It is obvious that this guy is one of those doctors who is arrogant. Simply because he doesn't "know" your neuro doesn't mean your neuro is somehow bad, which I believe he was implying. Sounds like projection to me. ;) And it also sounds like bullying. The old "We're better than you" or better than everyone else BS.

Please get the copy of the arterial blood gas report and anything else that was done, including the doctor's report. The ABG may not be "fine." I don't think you can trust what the doctor told you, only what tests were done.

Did they even do a clinical exam? A thorough one?

And it sounds a bit like all this guy was doing was backing up the other doctor's decision about not admitting you instead of thinking on his own. They do this in order to avoid lawsuits. It's stupid, childish and ridiculous, not to mention not helpful, but that's what doctors are doing these days. Back each other up at all costs - unless the doctor is outside of the "doctor gang" as your neuro is. That kind of behavior used to take much longer to show it's ugly head. Now you have ONE doctor or ER hop and they go straight to it, I guess.

The only thing that concerns me, and I'm sure the only thing that concerns you, is getting better. Maybe that will only come with help from your current neuro. Like trying Cellcept, plus IVIG plus Mestinon.

If you get to the point of not being able to breathe in or out at all and can't move, dial 911. You get far more serious attention when you do it that way instead of having someone drive you. And it's not as dangerous.

I'm truly sorry you are in such bad shape and no one is doing enough. But since you have such a good neuro, I will bet you guys can figure out what you can do to get better. At this point, it may take you months to recover. The longer someone goes undiagnosed with MG, the longer it can take to get better. The immune system is like that.

Hang in there. I'm trying really hard not to go berserk. You don't have the energy for that anyway. I've been where you are and it's almost too much for me to deal with.

:hug:
Annie

Tracy, I'm sorry you have to go through all this.

Tracy, I'm so sorry for all that you are going through. It might be wise for you to make an appointment to sit down and talk with your neuro about what you have been dealing with. You both need to draw up a plan of action for the future. I'm not sure if it would be possible or not, but maybe he could get in touch with one or more ER's in your area and explain what your needs are.

Good luck with every thing.

Is your husband in denial of your condition? I have read some great articles in the MG newsletter that helps the caregiver have a better insight into the condition of an MGer. My husband is very good and understands. My daughter on the other hand just doesn't understand why someone she has heard of with MG can jump over the moon but mom can't go marathon shopping. She is 34 and a mother of 2. She still thinks mom is bullet proof.

Tracy, as I struggle with seeing the doctor this week about the myositis and generally worse state your story sickens me in its blasted reality. I have been in this place. To be at a count of 10 and sent home is malpractice. A count of 10 to a pulmo or neuro who knows this test means you should be in the ICU. You were horribly mistreated.

I am sending you love and good thoughts. I have only read your post as my eyes and all are keeping me from really being online as usual. I care very much that you get the help you need. I wish I could send a good doc to you like my pulmo tho even he as good and senior as he is doesnt get the counting test. I have only has ONE student who knew this test and did it the day I was admitted for a myasthenic crisis. I made it to 16 and I was being admitted by that neuro in part because I could barely talk because chest muscles that weak.

I understand and will send a prayer to 2.

Annie59

OH thank you so much everyone. I have an appointment with my neuro on Monday, and have put in for an appt with an MDA clinic. They now have all my records and I'm just waiting for my turn. Unfortunately my neuro is moving to CA.

My husband and I are not in the best place. He also has Lyme Disease, pretty bad chronic neurological, and is in total denial. He also has horrific seasonal affective disorder, having spent his whole life except the last 12 years in California. He is miserable, angry, and has no compassion at all for the 6 1/2 years I've been ill and not at all the go getter, thin, beautiful woman he married. He does no parenting and I can't so we fight all the time about the simple things, like get our son to bed, feed him, get him to school, it is a full on struggle to get him to do ANYTHING. HE is slipping further and further with a Lyme relapse, now sleeping ALL DAY. But he goes into fierce denial to the point of a power struggle and refuses to get treatment. I'm ready to draw up a schedule and if he refuses to agree to it, I'm ready to ask him to move back to CA with his mother. He is a non stop, constant source of extreme stress to me. He drops me off at ERS and then goes home and goes to sleep with no phone in the room and leaves me sitting waiting for HOURS until he might wake up and remember I'm at the ER. I cannot take it anymore.

Good Heavens Tracy that is horrible!!. The university I go to is this same way about lyme disease. A DHS worker I had at one point had a daughter who had been getting worse in a psychiatric way and pretty severe. Then a doc elsewhere finally tested her and she had lyme and when she was treated all the psych symptoms got better. They were all from the lyme. So much politics in medicine.

I havent been reading much as I have been sicker but I hope you are more stable tho this message didnt sound good at all. I am worried about you.

About you husband leaving you off at ER and going.....At this point for your health it may be better if you are appart. There is a simplicity that comes when you are the only one in charge tho if you go to ER do you have backup for the kids. I spent most of my life divorced and raised my second from infancy. My daughter left me at ER 2 times last year. She is a mom and her youngest was a baby so I felt there was no choice. It is a lousy place to be alone.

Annie59:hug:

Well, I very nicely asked my husband if we could talk, and then asked if we could set a time to go over a few things. I said we needed to write up some basic expectations, guidelines, a schedule and things and adhere to them because things were really falling apart. I said if we couldn't do this together I was going to have to ask him to leave. He said, "so basically if I don't do everything and kiss your *** I have to leave?" I said no, we needed to understand what needed to be covered and have it all laid out.

I had been dropped off at the Cancer Center that day and was done early. I called him at noon and asked him to call a few friends to see if he could get me a ride home. He immediately went to sleep and did not call anyone. The medical taxi was going to pick me up at the regular time at 3:30 but was very late and I did not get picked up until 4:45.

This was the end of my rope. I'd virtually waited in waiting rooms when I was too sick to sit up for 4-5 days in the last week and a half, because of him.

So he chose to leave. By the next day his mother had bought his ticket and he is flying to California on Friday. He didn't even want to try. He has no concern that he is leaving me alone with a sick 15 year old to take care of, never mind myself. He is headed out to sunny CA where his mother will wait on him hand and foot and isn't looking back.

Oh, Tracy, I'm so sorry. I wish there was something I could do to help.

Abby

I'm sorry you are in such a difficult place. Seek out information from local agencies or church groups to find out what kind of help you can get - for both you and your son. Also, now would be a good time to see if you can find back up for son's care in case you ever have to be hospitalized at some point in the future.

And as a one-time Ct. resident, I can tell you they are very agressive about child support - check with Family Services about what your son's rights are for financial support from his father.

Tracy, I'm very sorry but am glad you stood up for what you need. Good for you.

Now, as far as getting help . . . you can get an internist to set you up with a social worker to get some in home help. I am considering having to do that too. Do you have insurance?

There are state agencies that can help too. You are in CT, right?

http://www.ct.gov/dss/site/default.asp

There are ways to get help, even from schools. If it hasn't been cut, most schools have special education departments to help.

So there are ways but you are in such a bad place right now that someone will have to help you get it. You have to get better help for your MG soon or you won't be able to do anything.

I hope you can find people to help you out.

Annie

Thank you, I already have Personal Care Assistants and they are going to increase my hours, so I have inhome help for myself and housework, errands, etc. I put an ad on Craigslist looking for a young guy, preferably college student to move in and live rent free in exchange for 15 hours a week of work, mainly around my son. They would have to get him to and from school, be like a mentor to him, spend time with him, etc. I got two AMAZING responses both from UConn graduates that were amazing. Both had backgrounds working with special needs kids, tons of references, almost too good to be true. I felt much better after that. I will interview them this weekend.

My husband's entire SSDI check goes into our checking acct and will continue to do so because it is the same amount as our mortgage. He won't need any money out there, he will live with his mother and she will take care of him. He left last year for 3 months. There is nothing he needs money for, she has a car, house, and feeds him. The mortgage has to be paid, so basically his money will go in and then pay the mortgage. Mine will pay the second, and the other bills.

Luckily I already have services in place; it's just that I can't be here alone with my 15 year old who is also real sick with Lyme and about to start a serious treatment regimen including IVIG. If I get one of these guys to work out, I think we'll be okay, except that my house is a freaking disaster but with the pCA's help and being able to get out of bed again maybe that will start to change.

Only thing is, after I was gone all day yesterday to neuro I got home and he had totally changed his tune and said he wasn't leaving, he wanted to work it out and has been great ever since. I think my being gone all day gave him time to think??? Or all the snow, and him realizing how vulnerable we'd be, or that this was his home, it's a little exciting with all the storms, he was on the roof when I got home all charged up.

So now I don't know what to think. But he has been great now.

Perhaps he's 'great' because he sees how easily he can be 'replaced'. Sounds like you have made great progress in a short period of time to line things up for the better. Maybe a sunny vacation with Mom would be good for him after all!!

Just a thought!