Wednesday, November 26, 2008

On the kindness of strangers and the power of positive thinking

I was born Lutheran, but consider myself an Atheist. Wasn't always this way. But, when my step-son Patrick was shot & killed... this is where I landed.

That said, I still believe in the power of prayer. I don't pray myself, but I believe that prayer is very similar to the power of positive thoughts. And, whether its positive karma, or chi, or who-knows-what... positive thinking is good for you. It's hard to practice when things get all stressful, and things go from bad to worse... and just sometimes, you need someone else to help remind you to think positively, to want and ask for things to improve.

"A" had driven me to my sleep-deprived required medical test... the second long-shot test. We were sitting in the waiting room waiting for our turn... and there was the cutest baby sitting there with grandma (mom was also being tested). Grandma was about my age, super nice & easy to talk to. We talked about a little bit of everything including the fact that I wouldn't mind being a grandma now, only it's obviously so NOT the right time for "A". I can be patient... he needs to get his life sorted out first... but that I'm looking forward to a baby to babysit. Including the fact that her husband is an inventor... very cool. Including the fact that she home schools her teenagers. Lots of things. Somehow things came around to the story of my current medical issues. She asked me, very kindly if it would be ok for her to sit near me and pray for me. I broke into tears. She was so earnest, and thoughtful, kind, generous and giving. For a stranger, who happened to share a waiting room with her and some conversation for about twenty minutes.

So, we will focus on the positive side of things (for as long as I can try). I don't have many of the conditions that aren't treatable. I don't have a tumor, lupus, ms, large clot in my brain. I am able to get up and go to work every day. It may be all I do that day, but I am able to do it. I make a good living where I work now and although I've had a lot of setbacks on the road to getting out of debt (beyond obviously); I do believe I'm doing all the right things. I just need to toughen up a bit, and not use my bank account until things get to a better place.

"A" and "a" are both healthy and although neither is jumping with joy on a daily basis - their lives aren't actually disasters either. I believe that if I can spend more time "enjoying" myself with my boys and less time grousing from the bed - that I can improve their happiness. Enjoying time with my boys means more time on the couch -- but I can do that; and more time doing things that they enjoy doing... playing games, coloring will work for "a" -- for "A"? I'm going to have to stretch myself a bit... but then again, he doesn't really need me to do much - just give him a chance to talk more about computer games and his fantasy games... just making myself available and listening is more than I've done in the past. I can do that much.

I've also been really bad about walking the dog lately. Now that we live on the first floor, I can tie her outside and don't HAVE to walk her for bathroom breaks, I was still walking her at least twice a day until stress & health issues made that so challenging. I still won't be able to walk her as often as I'd like, but I'd like to get back to walking her at least once a day. She deserves it and needs it... and she'll be so less hyper if she got that exercise. SO, that's another thing I can do that will only take 10 minutes a day (at least at first... more if I start feeling better, but I'll build slowly).

As for my health. I'm going back to my Internist... I know that it's likely that my extreme exhaustion is back due to the stress more than anything else... but he also took me off of a couple of the supplements. As such, I really want to verify that this reaction isn't a result of taking those out... I want him to retest me and see if I don't just need to take smaller dosages. Its not a solution for everything, but its at least stage, the start of a plan of attack.

Stage two - I'm going to do some searching - see if I can find any local medical detectives. Maybe if I didn't need to go to New York to find one, I can find a solution sooner and less expensively. If not, then I'm saving up for a trip to NY. And, if nothing is figured out? Then we go to stage three.

Stage three - I'm going to monitor to see if my health follows the trend and I happen to get better in the Spring all by myself without treatment. Seems like that's been the trend - get worse in Oct - Nov; get better (somewhat) come spring. It's not like I love snow anyway, and if nothing else is figured out, but warm weather makes a difference; then I think I need to seriously consider moving South. Don't know where - guess it'll depend on locations where I can work from and keep my current employer or where I can find other work - where the cost of living is reasonable and the weather temperate.

So, a plan of attack, positive belief that any one of these stages will absolutely help me feel better - if we don't find the solution, at least I'm not just lying in bed all depressed because no one knows what to do.

Tuesday, November 25, 2008


Things are wrapping up for a little while at work, so am wasting my sleep-deprived afternoon - hunting up giveaways.

The first - Purry Logic (good gift for sis for Xmas) from Robyn's Online World -- which also enters me to win an Amazon gift card (would pay for at least one or two gifts for "a")

An Immersion Blender at Frugal Mommy of 2

A $25 visa card at Living Life in the Free Lane

Land's end items at MomAdvice

$50 gift card to Target or BP at Grocery Price Blog

Coupons at Confessions of a Coupon Junkie

And finally, a chance to win $2000 gift card at Amazon - at Amazon (wouldn't that just make my holidays easier???)


Just a positive note (I know, we don't have enough of these).

"A" contributed 75% of his paycheck to cover expenses this week and has been cleaning house & being "Mr. mom" so that I can spend my evenings and weekends in bed, lying down. He's doing dishes, helping cook dinner, helping get "a" to bed, vacuuming, the works. Today, since I have to be sleep deprived for my test this afternoon; he'll be driving me to & from my appointment.

Figure I always rant about the stress he's added to my life (not so much lately); and rant about the lack of employment... but don't spend enough time talking about how he helps me on a daily basis.

Friday, November 21, 2008

It's not Lupus

Which - we didn't really think it is, just a confirmation that we were right.

Next is the seizures test. Again, not that we think it is... just trying to rule it out. Test is on Tuesday at 1:00 pm. I can't sleep the night before, nor shower. So, I'm working from home in the morning, and may or may not work that afternoon (chances are I'll be sleeping instead). Doesn't sound like Tuesday is going to be a good day. "A" is asking if he can lock me in my room since I'm really usually very grumpy if I don't get enough sleep.

Thursday, November 20, 2008

Credit Counseling

OK - so, as you very well know, I had a bit of a breakdown last week. I called Employee assistance counseling in tears over everything. I didn't know what to do, where to turn, how to "cope" when my "net" paycheck post paying off the overdrafts caused by the garnishment is going to be $35.

I was told I ABSOLUTELY POSITIVELY MUST file for bankruptcy. That evening, my good friend also told me I MUST IMMEDIATELY file for bankruptcy. Honestly? I'm completely freaked out by the possibility that if I did file for bankruptcy with my current income and come up with a payment plan; but then my health continues to deteriorate, that I won't be able to fulfill that payment plan; and I can't file for bankruptcy again; and I'll be in even worse shape. That's my fear. If I can put off filing for bankruptcy until SOMETHING is figured out about my health, if I was even diagnosed, or had a remote clue how bad this is going to get. Remember ? It was just four years ago Thanksgiving, when I was in pain, I was managing to get along; but within HOURS, I had to go the the ER and then into Intensive Care. I don't know what this is, but I do know that it has the potential to go from bad to REALLY, REALLY bad in little to no time. Last time I went through the same symptoms I have now, I ended up virtually bed-ridden for three months - three months without pay.

So, anyway, no matter what I do, my EAC strongly suggested I get Credit Counseling to get my budget in order. OK, well, I've got a budget... if I do the credit counseling, and they have any "fixes" for me, I'm all for that. Oh, but I was warned when they set up the appointment, that I should "gather together all my bills" - um, yeah, they're together. For the past four months (while I've struggled with overdrafts, garnishments, and a move)... I've been budgeting virtually to the nickel. They're "gathered" already.

So, last night, I had my credit counseling. There were two things...

One, she couldn't believe my kids & I weren't starving on $100 a month for groceries. Now, honestly? I'd like to spend more than $100 a month for my groceries. It's been VERY hard work for me to get our budget that low. I don't want to make everything we eat from scratch. I don't want to eat macaroni & cheese once a week (well, ever). I don't want to eat potatoes instead of steak... so that "a" can have more meat. But, I'm making do. We can eat canned fruit instead of fresh fruit. We don't have to have pizza. We don't have to have steak. But, it would be nice to have hamburger more than twice a week (as in, in something)... vegetarian chili isn't my favorite.

Second, I'm paying too much money for bank charges, overdraft charges, etc. Huh? You think? Yeah, I knew that. I'm doing everything under the sun, including eating on $100 a month to try to avoid it... Like taking out 401K money thinking it would stop the hemorrhaging... just to have another garnishment take me right back to the beginning.

Otherwise, my budget is good. If I wasn't being garnished & overdrawn every couple of paychecks... I should be able to afford not only my bills & expenses... and money towards debt. Hmmm. Really? I knew that. So, want to know what her recommendation is instead? Stop working with my creditors and just let them garnish me. ???? HUH?

Well, since only one company can garnish at a time... the others will just call me constantly over not making payments... but then I'd know whats going on every month. Seriously? This is the suggestion?

Here's what I was doing.... I was making a "good faith" payment. It wasn't as much as most of them wanted per month. But, it was a payment. I had a dozen creditors at the time, and it was $100 per creditor. Since the majority of them wanted $300-$450/month. Most of them were NOT happy. I got called continuously. I repeated myself endlessly. They complained constantly. AND? I STILL got garnished.... When I got garnished (at that time it was payroll at $550/twice a month)... I couldn't afford to pay my other creditors. Which ticked them off. And escalated the "punishment" of creditor calls. To the point where I didn't want to deal with them anymore. THAT's WHY I went to this debt settlement company.

So, I signed a contract - sent all the statements from the creditors still in contact with me. The settlement company contacted all of them, gave them my signed power of attorney, and told them to cease and desist collections from me. I've got a couple of them still sending me bills, but I just forward them to this company. Silence. No haranguing ... no endlessly repeating "I can't afford to pay that much". (Like that doesn't make you feel awful).

Here's the issue - I've lost track of who's collecting for a couple of them. They aren't contacting me anymore. They aren't calling, they aren't sending me notices, and ... point in fact, they then garnished my checking account - admittedly, I did get served notice on that one (didn't remember, and can't find it today)... but I did get notice. Last time I got garnished, it happened without warning... notice showed up about five days after I got garnished. Since this company wasn't in contact with me, I didn't give their information to my settlement company... since the settlement company didn't know who to notify, they couldn't.

Everyone keeps telling me that I should stop working with this company. But this company has done more good for me already than anyone else. They stopped the harassing phone calls. They are negotiating down the debt I owe so that when all is said and done (god, I hope we get there)... the amount I will have paid even including their fees is less than I would have to pay either paying $100/creditor/month (and getting garnished) OR via bankruptcy OR via "just let them garnish you". Yes, I am paying a fee, but 75% of that fee has been paid. The service they provide is that I don't have to deal with the collectors. This is a good option for people under stress, like I. I know that bankruptcy will give me the same benefit, only now I have to go start over with paying the lawyer his fee... AND, if things get tough? Bankruptcy won't "give" if I get ill and can't work anymore. This settlement company? They'll work with me and adjust my payments accordingly. AND, if in the end, things get REALLY, REALLY bad? I can then file for bankruptcy, only if I'm not working? Then I would qualify for a Chapter 7 and even if the debt isn't erased, it would still be reduced. To me? That's a much better option than filing for bankruptcy now. If my health wasn't at risk, then maybe, I would be more open to filing now -- but I am worried about getting locked into something and then things really fall apart. Like they did four years ago and again two years ago.

The one good thing that did come out of the counseling - is that she did come up with the solution for how to discover who owns the debt currently. It'll be a lot of work... but to call the original creditor, they should tell me who they sold the debt to... call them, find out who they sold the debt to... and so on and so forth until you find the current collection agency. If I can get the current contact information for the three or four debts currently "on hold" at the settlement company because they don't know who to contact... I should be able to get the cease & desist orders out and hopefully no one else will try to garnish me. This is important, because it's only by being able to set aside some money every month that I can make a "bulk payment" and get some of the creditors to agree to accept less money. To date, everyone who has been contacted by this settlement company has abided by the process... so, the key is finding the last few.

So, this week, I'm calling the settlement company and getting their list of whom they haven't contacted yet (might ask who they have just in case it helps me decipher the puzzle). This weekend I dig through all my old paperwork to get phone numbers & account numbers from the original accounts.... might be tough, I tossed some knowing they'd been sold to collections... but find what I can find... and then start making phone calls.

Tuesday, November 18, 2008

Flipping a

This s*cks.

OK - knowing I only had about $38 in my checking account... I wanted to do some preventative actions to keep it from becoming a negative amount. I knew I had an automatic payment coming out of the account for my membership at the YMCA. Since my health is deteriorating, I know I'm not really up to working out right now. So, I call them up to cancel my membership. They need seven days notice to stop the payment... and we don't have seven days.

So, next I go to the bank on the weekend - because last time I overdrew due to an auto-pay, I was told I could come into the bank to prevent that. So, I asked them to not allow payment (not like I don't want to pay the monthly payment, just that I can't afford to).

They won't... but they will reverse the overdraft charge for me.

In the meantime, I know I have $38. So, I withdraw $30... ($5 to buy groceries for the week). And I do an auto-pay at Walgreens for my prescription (with a coupon, got them for only $4).

And what do I find today? That the auto-pay for the YMCA went through first. So, now both the $30 & $4 overdrew as well... amounting to $105 in overdraft charges. And chances are? They'll only reverse ONE of them. This so f*cking s*cks. I can't win.

Thinking about the spring

My gal-pals at work are planning another weekend at a co-worker's cabin in the Rockies... would love to go, and given that it's only around $200 for the flight round trip, the food would be food we make ourselves and since no one will let me ski, then I don't even have to spend money for lift passes.

And, honestly? By the time February rolls around, I should be able to afford $200 for the trip.

But, I'm thinking that if I save up - around $400 - and then pester my NY friend Phil for a place to stay... I might be able to afford to see the "real" Dr. House... Dr. Bolte.

If they don't come up with something with these latest tests, I'm basically going to be left with no options locally for finding a solution. I've already been to Mayo... and they couldn't help me. I've already been to the University of Iowa Hospitals and Clinics... and they couldn't help me. I was debating going to see Dr. Bolte when things weren't nearly so serious. At the time, it was a "would be nice to see if he has other ideas"... now that I'm suffering from symptoms that keep getting worse and worse and no one has any idea what to do about it... now, just maybe, this is what I need to consider as an option next. It'll take me a while to save the money up for a trip, but I do think that I'm probably going to have to consider this seriously.

Monday, November 17, 2008

Saw neuro today

OK - so, we've got three possibilities.... two of them are long shots; and the other one is what I'm already being treated for.

Long shots (as in, they don't believe I have this, but the test will prove it one way or another):
- Lupus
- Seizures

What I'm being treated for:
- TIAs

If it's not Lupus nor seizures - no one knows what to do. Odds of it being either of those, less than 1 in a 1000 for either.

Next steps? blood tests, and a seizure test... after that - no new steps. No new ideas...


Friday, November 14, 2008

Still surviving

So - stopped at the food pantry, have enough food that if I pick up some milk... not much else, we should be able to eat "ok" until the 22nd. The reason the 22nd is a goal, is because that's the date I pick up the food from Angel Food Ministries... and that should feed us for a couple of weeks beyond that date. Not much "meat" - but four cans of tuna and one can of spaghettios & meatballs. ... but with peanut butter, beans, pasta, rice, and eggs... and we'll make it. It means I'm making vegetarian chili this weekend, but that I can do.

Have $35 from my paycheck. Beyond the milk, I need about $10 in gas, and about $8 for my prescriptions... I'll save the rest for some emergency I can't remember. Unfortunately, this means that "a" can't join the rest of his preschool class at "pump-it-up" field trip - which is a $7 event (ok, I know I do have the money, and I know he'll hate me for saying no... but right now? it's not in the list of things we NEED). And right now? only "NEEDS" are on my list.

If by any chance a miracle happens and the settlement company convinces the garnishing company to return some money to my account - then maybe, things won't be so tough.

Daycare - we may be ok. I talked to the director this afternoon... told her what I was going through. I've got money coming out of my check every payday into a child-care account (pre-tax) that auto-generates a check at the start of every month. It covers about two and a half weeks every month of the daycare cost, and I pay the rest out of my pocket. Since the two-and-a-half weeks from the last check covered the end of Oct... I'm going to have issues. But, since she knows there's a check coming December 1st, she's ok with not getting paid until then. Then I basically will just have to pay the whole month of December out of my checks.

The company currently garnishing my checking account was going to be going after my paycheck next, however, has agreed not to for the time being since they are going to work with my settlement company.

I've tried canceling my membership to the YMCA (auto-pay), but it's too late to stop the payment from coming to my account next week. I'm going to the bank in the morning to request that they stop the payment. Because if they don't - then I've got another overdraft charge I can't afford. Last month when I had an overdraft because I'd gotten confused about a payment schedule on auto-draft, they told me that they could have kept the payment from going through... so we'll see.

Next - investigate filing for bankruptcy. As much as I would like to have done so today, I can't afford to... I've got the debt counseling appt scheduled for Wednesday night next week. I'm thinking that it's probably a "you-have-to" situation. As much as I understand that, it doesn't mean I'm happy about it... I hate the fact that I've put $2K towards debt settlement and that if the only reason this situation happened was because of poor communication on my part (which I have since figured out it's my fault).... then there's still a possibility in the back of my mind that I can continue to count on this company to keep this from happening again. I know - that means I'm too optimistic... but I'm the one who screwed up.

How did I screw up? Because last week I got the notice for the garnishment. I'd completely forgotten this. Why? Because I was served notice the same day I'd been knocked out for a medical test and was loopy. I received the notice, read the name & put it aside to call the settlement company to "deal with it" ... figured I'd called after my brain got turned back on. And immediately forgot I'd ever received it. Late last night (still not sleeping) - my mind was churning through lots of thoughts of what do I have to do if I'm not going to have any money for two weeks, what do I need to worry about, who do I need to call, how can I file bankruptcy if I don't have the attorney fees, etc... and I remembered that I'd been served notice about something - and then I remembered what company - and it was the same company. ugh. I could have prevented this. D*MN it all!

Anyway, so far, we're going to survive. There are free meals two evenings a week if things get really bad, but I think we'll survive. I'm still majorly stressed out. But, am not crying for hours every day anymore... that's an improvement. I'm still at the point of crying at the drop of a hat - but at least right now I can bite my lip and stop crying and focus on what I need to do. Like I said - that's an improvement.

Thursday, November 13, 2008

On nerve damages

I'm researching further to see if we come up with some suggestions or questions for the neuro.

On webmd... and I quote:

In one out of every three people with peripheral nerve damage, the damage comes from diabetes. In another third, the cause of the nerve damage remains unknown.

That s*cks.

Stress upon stress upon stress

So, I finally got the 401K withdrawal that I probably shouldn't have done.

I thought about it for about six months before I blogged about doing it. Then it took me over a month to finally go through with it. Unfortunately, a creditor garnished it plus the entire balance of my checking account - which if they'd known about the outstanding checks they would have realized my balance was actually only around $40. But, instead, my balance is now -$1600. Yes there is a minus in front of that number.

I did not get groceries last week because I knew there wasn't really enough money in the account to handle it. Now, it's going to be two more weeks before I can buy GROCERIES... since my entire check will be used to cover the overdraft. I'm going to be getting the "pink slip" from my daycare next - because I can't afford to pay them.

I have called the attorney's handling the garnishment to ask them to at least release a partial amount so that I can keep my job and put some food on my table. I don't know whether it will help. They are looking at it to determine what they can or will do - and I won't hear back until Monday. I'm tempted to stop the direct deposit on my pay check. If they mail me my check I can choose to deposit some of it and at least then I can keep enough cash out to survive on. But doing that will mean that my bank account will remain overdrawn long enough they'll probably close the account. Oh, and the checks that bounced/overdrafted? Include life insurance payment, rent and my overdue car payment.

The bullying that's occurring is going to force me into bankruptcy which really, really s*cks. Not that I'm 100% against bankruptcy. But I've just spent almost $1800 to a debt recovery service trying to avoid bankruptcy... and its definitely not refundable.

I've got the number for a food bank, so we won't starve just yet... I'm proud, but food comes first. "A" & "a" have eaten pasta or rice now for three meals straight - so it's time to go to the food pantry.

I'm debating the next step - which is probably to see if "a" can go live with his father for a little while since I won't have the ability to pay for his current, let alone a new daycare. If that's not a possibility, I can fight for the right to work from home temporarily. I know my boss won't be happy about it, but it's either that or lose my job or lose custody of "a". I'm not happy about either of those either - but you have to do what you have to do.

I spent about two hours this morning talking to attorney's and employee assistance counseling in tears in a conference room. I can barely think about work, let alone focus on it. I haven't slept properly for three nights. I keep trying to come up with ways to solve the issue... and since my "solutions" are obviously not working, it's not doing me much good.

I finally got an appt to see a neuro on Monday. My last PTO day will be used doing that... after that I think I need to have like three days unpaid before short term disability will kick in... as between the stress and my health, I'm barely functioning... and stress is not going to help anything.

I'm tired. I'm frustrated. I'm angry - though I have no idea who I am angry at. I'm not eligible for the majority of the types of assistance out there. I can't afford the lousy $20 co-pay that a counselor would charge me. I've been at the end of the rope for so long battling this health issue and my debts that I feel like all I have left is a thread and I've got it pinched between two fingernails.

Tuesday, November 11, 2008

Guess Not

Dr DID run the B12 test last last - I just didn't know it.

Good news is that my levels were normal... bad news is that we still don't have any clues.

A stretch - but perhaps, some hope?

I've been reaching out to my list groups online for suggestions as to what might be going on with my health. And one thing that's come up more than once is Vitamin B12 Deficiency - which can become VERY serious. I kept brushing off the suggestion, but, now I'm going back to it. And I think that the very reason I kept thinking it was unlikely is the exact same reason my Dr thinks it's unlikely - and yet, we've never really proven beyond a shadow of a doubt that it isn't this.

Here's my explanation of why we think it's unlikely - and why it's still possible - and why I asked the nurse to talk the doctor into ordering another test for my behalf.

In 2004, after my PE; I was tested for a wide range of clotting disorders. One of which, was High Homocysteine levels. Homocysteine is a byproduct of a condition of Vitamin B deficiencies... untreated, it can increase your risk of clotting (go figure, albeit only very slightly - not enough to cause clots without other risk factors); and even worse, can lead to heart disease and heart attacks. So, it's important to manage even if it isn't the 'root' of my clotting issues. Treatment is to take B6, B12 and Folic Acid. Very inexpensive, over-the-counter vitamins. Easy-peasy. Although high homocysteine levels in and of themselves are not inheritable, but instead 'acquired' - there are some underlying conditions that can be inherited that cause the body not to process the vitamins from diet & supplements that can be at the heart of the issue.

Later, I was also diagnosed with Protein C Deficiency which is an inherited condition. So - since my father had already passed, my mother agreed to get tested for the clotting conditions - with the thought that if she does have them, then my brothers & sister should also get tested; if she does NOT have them, then I obviously inherited them from my father - and since my brothers & sister have different fathers, then they aren't at risk. She didn't have the Protein C Deficiency. However, when she asked for the other clotting factor test, she'd forgotten that it was high homocysteine levels - instead she asked to be tested for Vitamin B deficiencies (the part she remembered).

And go figure, she had B12 deficiency - severe. She started on B12 shots immediately... AND she had some improvement in her undiagnosed medical condition (at the time). A lot of improvement. In fact, some of the symptoms were symptoms my sister also had at the time. So she got tested for B12 deficiency - which she also has. In fact, over time, more than a dozen of my first cousins have also been tested and also found to have B12 deficiency. Now remember, dozen seems like a lot, but I have over 40 first cousins, so this is only like 25% of them. But basically, 100% of the ones tested have all tested positive. And every last one of them is taking B12 injections.

So, I go back to my Dr at the time and ask them the difference in treatment... if we have the same condition - why are they on injections & me on supplements? His response was that a lot of people aren't able to absorb the nutrients from the supplements, so if they have B12 deficiency the assumption is to inject directly into the blood stream. So, I asked him how he knows that I'm absorbing the nutrients from my supplements. He thought that was a good question. So, almost a year later, they re-tested my homocysteine levels - which were now normal.

In the meantime - Mom had also had a B6 test for when she had been doing her screening for B vitamin deficiencies - and was found to have toxic levels. For several months she had gotten on me about the fact I was taking B6 daily and that I should get tested for toxicity. I talked to four doctors about it and every last one did NOT order the test because "it's nearly impossible to get toxicity with one over-the-counter supplement a day". I finally convinced the fifth doctor to order the test. Guess what, I was toxic.... not found until early 2007. So, I stopped taking the B6 supplement. I worried a little that my homocysteine levels would climb. But again - was told that I didn't need to be monitored. I asked why not.... because homocysteine is not a result of a deficiency in ALL 3 nutrients, it's more a "symptom" of any one of multiple deficiencies. Finally, they did test me again, and again, I'm normal (this is good).

Flash forward - my symptoms are something that are typical with a serious B12 deficiency; and I know for a fact that my internist was worried about it - because again he ran another homocysteine level test - again I was normal. But, here's the kicker... I've NEVER gotten a B12 test. They've always "assumed" that if my homocysteine is normal, I'm not deficient. "It's nearly impossible that I could have normal homocysteine levels AND a B12 deficiency" - note the "nearly" in there. Been there before... proved them wrong before.... willing to do a simple blood test "just in case".

So, I figure, if my Internist can insist on a sixth MRI in two years 'just in case'; I feel pretty comfortable in asking for a simple inexpensive blood test 'just in case'. If I'm wrong, I'm out $12. And, this is a stretch, as it would be highly unlikely for it to happen. BUT, I'm willing to turn over this stone and just make doubly-sure.

If this is what it is, it would be simple to exchange the b12 pills for a self-injecting of liquid B12. I've given myself shots before -- daily shots at that; and this would be only monthly. Problem is that nerve damage caused by B12 deficiency (the most common cause of my symptoms) is permanent. However, I can halt the progression of the condition in its tracks immediately and prevent all further damage.

So, a little bit of hope is churning up that that little assumption that homocysteine levels are sufficient to rule out B12 deficiency in me personally - is false; and that just maybe, we've stumbled onto a solution. Cross your fingers for me!

Monday, November 10, 2008

Five year old funny

So, last night "a" was watching Batman - a little bit "grown" up for him, but he did ok with it - and since he really wasn't paying that much attention to it... I figured, I'd let him. I was laying down trying to "rest up" for the work week. He came in quite upset that "A" had changed the channel. I came out & verified, nope the channel was right. I told him it was just a commercial and to be patient.

He wasn't convinced. He was very, very upset.

About two minutes later he came in to inform me that I was right - it had just been a commercial - and get this - and I deserved a "thumbs up" - good job, mom! LOL

Getting worse

OK - so Saturday it took me a couple of hours to figure out what was going on - but basically, the intermittent numbness? Just stopped - "stopping". Its no longer intermittent. Its now constant. Has been for over 48 hours now. Last time this happened it was declared "permanent". For some reason, I'm trying to avoid the thought that this is already permanent damage... I know it's just denial - but hey, I'm going with it for now.

AND? now, I'm having "episodes" on my left side. Just 3 or 4 times a day so far, and maybe only a few minutes long - but if the pattern holds true - they'll get longer & more frequent and then eventually? stick around.

My appt at the neurologist isn't until the 8th of December, so I've called my Internist and his nurse is hoping he'll be able to convince someone to see me sooner... I'm feeling quite depressed about all of it.

And, a little fearful. What happens when I lose all feeling? As it is, I had a bloody lip the other day and it was dripping down my chin & onto my shirt - and I didn't know it was bleeding - it took my co-worker seeing it to bring it to my attention. Add the fact I'm taking blood thinners, and it's not a good mix.

Even more worrisome is what happens if it doesn't stop at just "feeling" - what happens if I have an episode where I can't move??? What happens if that happens while I'm driving to or from work? I'm a little freaked out and trying to simply calm down about all of it. But since no one seems to have any clues to figure this out... I'm just trying to stop thinking about the "what ifs" and focus on the fact that it hasn't been serious yet - and it's not like I've lost all feelings.

But, I can't help but feel sad about what I've already lost. I don't want to lose more. As it is, now, I can't feel the wind on my face (well half my face) - I have trouble testing water temperature - poor "a" has wizened up fast and tests the water temperature for himself. Good news (I'm trying to find a good side) is that my chronic teeth pain is gone on my right side... doesn't bother me a bit right now. Since it did bother except during my 'episodes' -- it's kind of nice not to have to deal with it now... so, is it bad to want the left side to 'catch up' and get in sync with my right side before finding a cure???

Friday, November 07, 2008

Overdue Halloween post

Now that Blogger appears to be letting me post, I figured I'd do some catch-up.

Here's my superhero - "a" - first as Spiderman for the Halloween party (costume from two years ago - face painting by mommy) and as Batman - for the Trick or Treating. Sorry about the blurry images... this is off of the cell as I don't have the money right now to replace my camera... sigh.

Can you imagine? He was "done" after six houses and felt he had "A LOT" of candy. When I was his age I spent HOURS getting candy hitting HUNDREDS of houses - and I'm not exaggerating - since my teen-age brother was driving, he wouldn't let me quit when I got tired (as then there'd be less loot for him to take)... and we'd end up with four big paper grocery bags FULL of candy by the time we were done. Of course, to keep mom from getting suspicious, he'd keep two bags in the car ... which I never saw again... talk about indentured servant!

So frustrated, don't know where to turn

My internist is getting me scheduled to see a neurologist. Right or wrong, I asked to see the neurologist whom I've seen before ... she's awesome. Problem is that two years ago she already ran all the tests she could think of to identify what might be causing this issue besides the PFO. Since she couldn't find anything she agreed with the treatment plan we went with.

Unless something new has come out in the last two years, there's probably not much help she'll be able to diagnose my issue. I do believe, that if something new has come out - she'll know... so between that and the fact that she won't make me redo all the tests she's already ran... I figure she's my best bet. If I went to someone new, they'd make me redo all those other tests assuming that the neurologist I saw before wasn't any good.

I figure there's less than a 5% chance that she can diagnose me, but she's the next one to turn to. After this? No one knows who to send me to or where to send me or what to look at next. We're basically all out of ideas. I feel "doomed" to have a second stroke, if I haven't already.

My right side is still far number than it used to be, although I'm still having episodes where it worsens. I hate sitting around while things keep getting worse.... especially since there really isn't any "great" opportunities for relief in the near future. I'm thinking my appt with the nuero won't be for at least another two weeks - given it's taking them three days to call me to even try to schedule an appt. And then? If she can't figure it out? I don't have anyone else to turn to.

Thursday, November 06, 2008


PFO is the abbreviation because I'm in too short of time to go look up the latin name that it represents... its' the common heart defect that they blamed my stroke on and my recurrent symptoms.

I don't have one... I was mis-diagnosed.

Seems like it would be good news, except for the fact that while we originally had a treatment plan... now we have NO CLUE what's wrong and no way to treat it to prevent a second stroke.

Which means I need to see more specialists.... and spend more money... and I have no guarantee they'll figure it out and I'm not very happy about it all. I'll post more later when I have some free time.

Tuesday, November 04, 2008

Blogger issues

Blogger has been acting up - at least it looks like it'll let me post today.

Monday was the MRI - and interestingly enough - I had two spells during the MRI - one during the normal MRI, the second during the contrast stage. Still think it's highly unlikely they'll see anything. But one can hope.

Updated to report sure enough the MRI ($5000 down the drain) did NOT show anything. Not that I'm surprised.

But - it does also appear that my symptoms are degrading a bit. On Friday I dyed my hair (as I do often enough) - supposed to be "bronzed brown" - but it's a bit reddish-purple. Not exactly a great color for me... so I may or may not be convinced to post any pics.

In the process - as I am quick & not efficient and a bit sloppy - I would drip dye occasionally. What caught me off-guard was the fact that if I dripped or glopped on my right side, I couldn't tell until after I saw it in the mirror - who knows how much later. My ear itched? I reached up & scratched - and came away with a glob of dye. This happened repeatedly. In fact, even up to this morning - while washing my face, I could feel "wet" - but in a test - if I flicked water the only time I could feel it was when it landed on my left side (or my eye - another matter entirely). Freaky.

In addition - during the MRI, for the first time in two years, I had a small episode where I lost feeling on my left side. Totally freaky.

Then - when they put the contrast in for the second MRI? You know - the test where you have to lay perfectly still? I had some kind of reaction - I guess it's similar to how they describe Restless Leg Syndrome in the commercials - but, I've never suffered from it before. But, it was almost like my legs were "quivering" and they'd go from mild to severe - to the point where I actually reached down to touch my legs to prove to myself that they weren't actually moving. It would get so severe, I'd HAVE TO move my legs, almost voluntarily, but not quite... and it would relieve the symptoms. That too was very weird.

Last night going to bed, I thought about those sensations - my legs were totally at peace, and I was thankful that I don't have that condition... what misery for those who do.