Where has Millster been?

[millster]

So, just in case anyone cares or has really even noticed that I've been kind of absent for a while...We'll start with the fun part. I was diagnosed with Fibromyalgia in August. Finally, after more than 10 years of suffering, I have part of an answer. The reason i say part of an answer is that I finally have a diagnosis but as those who are aware of what this entails will know, that doesn't make much difference as there is little they can do. I'm on an "experimental" treatment using known drugs in an off-label manner that I seem to be responding to rather well. Had a rough weekend with quite a bit of pain and random fatigue spells, but that's just going to be life. At least the pain isn't quite as bad as it was and I'm mentally stable, now.Now for the sad part. My wife and I (oh yeah, i got married August 15th in case anyone didn't know that bit) found out Oct 9 we were pregnant with "our" first (her second, but honestly he feels like he's my boy). Oct 14 started what would become sheer Hell. We thought she had miscarried. Normally that would be bad enough, but we discovered over the next couple of days through follow-up that she had not. The next theory was that it was ectopic. They did the methotrexate shot to stop the cellular division and that was supposed to be it. Follow-up revealed a continued increase in Beta hCG levels, so she was still pregnant. Fast forward to Oct 27 and she ended up undergoing a D&C and laproscopy to rule out an ectopic and end the pregnancy that turned out to be where it should have been but was now close to miscarrying. So yeah, I haven't been around. Suffice to say, it's been a hard few months. Thankfully, my wife and I are strong people, didn't give up and really pulled together through this. Who knows what the future holds, but I know for now, it holds a great marriage and my return to GVC.

[lovemyraffe]

Sorry to hear about your Fibromyalgia. I was diagnosed with it about 1 1/2 years ago. Congrats on your wedding! That's awesome! I'm sorry about your loss too.

[joatmon]

you already know, but I'll say it againIf you need anything we can provide or do, you have but to ask

[rebbierae]

Ditto what Joat said--you know your friends are here for you!

[BlueCrush]

Very Sorry to hear, Wes. We had a miscarry in Sept and also had to go thru a D&C. Hope you and your wife are doing OK. My prayers are with you both.

[millster]

Thanks, all! Bec, good to hear from you again!She's doing a little better each day. Struggling emotionally and of course because of recovery time, etc... her employer was unable to secure her position (she did not qualify for FMLA) but it was an amiable separation. They're going to grant her unemployment, etc. It actually ended up better that way, because that was the cause of a lot of her emotional distress. She is very dedicated and didn't want to let her employer down. This way, she doesn't have to worry and can focus on herself.Me, I'm just trying to stay strong for her and dealing with MY side of it by talking with friends and my therapist. Again, thanks all for your support. I just had to get some of this off my chest.Brian, I hope the same for you. I'm so sorry to hear you and your wife had to go through the same thing. I could never have imagined it would be so hard but it definitely brings you closer in the end. My prayers are with you and yours as well. I hope all is going well.

[tribalman]

Quote, originally posted by millster »We'll start with the fun part. I was diagnosed with Fibromyalgia in August. Finally, after more than 10 years of suffering, I have part of an answer.Now for the sad part. My wife and I (oh yeah, i got married August 15th in case anyone didn't know that bit) found out Oct 9 we were pregnant with "our" first (her second, but honestly he feels like he's my boy). So yeah, I haven't been around. Suffice to say, it's been a hard few months. Thankfully, my wife and I are strong people, didn't give up and really pulled together through this. Who knows what the future holds, but I know for now, it holds a great marriage and my return to GVC. AWESOME ON THE MARRIAGE! throws rice!as for the diagnosis, at least you know the culprit. i hope it doesn't cause you troubles. good to hear from you, i hope you and your family have better tidings in the future. we are here for emotional support if you need us. keep up the good fight!

[damronjr]

Wow, you think you have it bad then you are made to realize it really can always be worse. Sorry to hear about all those unfortunate events that just piled up like that, I hope things turn around for you!

[808 Vibes]

I'm sorry to hear of your loss. {{{HUGS}}} to your whole family. I hope you get better soon. Now I feel bad for bothering you with all those I.M.'s!

[keithvibe]

I alwasy knew you would come back to bug me >>> lol JKI wish ya the best and hope you don't disappear again.

[AKLGT]

wow, wes! Glad things are improving from what it sounds like. At least you have some answers as I find knowing something is better than knowing nothing as that's equally frustrating.

[ramenboy...]

congrats on the marriage and welcome back, millster... as everyone has said already we're here for you

[epcIII]

Hi, hope things start to get better!

[Sublimewind]

I've been wonderin where you been bud... I'm sorry to hear about everything.. You and yours will be in my thoughts brotha..

[millster]

Quote, originally posted by damronjr »Wow, you think you have it bad then you are made to realize it really can always be worse. Sorry to hear about all those unfortunate events that just piled up like that, I hope things turn around for you!You know what though? I still share that outlook. Sure, things turned pretty crappy for me, but just the same, I have a friend I work with who has lost all feeling in and partial use of his right leg for no apparent reason and all this after his wife had her own brush with a very critical illness. Life isn't perfect for any of us, we just have to make the best of what we're given.Quote, originally posted by HawaiiPontiacLover »I'm sorry to hear of your loss. {{{HUGS}}} to your whole family. I hope you get better soon. Now I feel bad for bothering you with all those I.M.'s! Thanks! No worries. I just wish I could have been or more help in the whole thing!Quote, originally posted by keithvibe » I alwasy knew you would come back to bug me >>> lol JKI wish ya the best and hope you don't disappear again. Ah, now come on Keith... I couldn't stay away. If I knew I could bring darkness to your day, well that just brings a little light to mine. J/K as well. Thanks for the well wishes.Quote, originally posted by AKLGT »wow, wes! Glad things are improving from what it sounds like. At least you have some answers as I find knowing something is better than knowing nothing as that's equally frustrating.Thanks, Hope! Things are definitely improving. And you're right. Not knowing was far worse than knowing and just coping and coming to understand what it is I'm dealing with. Quote, originally posted by ramenboy... »congrats on the marriage and welcome back, millster... as everyone has said already we're here for you Thanks, RB! Friends (and laughter) are truly the best medicines!Quote, originally posted by Sublimewind »I've been wonderin where you been bud... I'm sorry to hear about everything.. You and yours will be in my thoughts brotha.. Thanks, man! Again, always good to know you have support. Thanks again, all. Things are definitely beginning to turn around and as usual, GVC has been a great source or support and friendship. I mean, why else would I have stayed around after I sold the Vibe? Of course I do have a Matrix in the family now, so I guess I've redeemed myself in that respect. And yes, yes, yes... I'll get pics up of it... I promise.

[ramenboy...]

Quote, originally posted by millster »...Friends (and laughter) are truly the best ...you get plenty of both here

[djkeev]

Ok, go out, get in the Vibe, fill up the tank, open the windows and go for a very long ride to NOWHERE! Just go and enjoy life, wander into places you've never ventured. Think "where does this road go" and follow it.Find interesting little cafe's or local greasy spoons to eat in.I find it very relaxing, my wife and I communicate best as we motor along enlarging our carbon foot print!Best of luckDave

[ArcsVibe]

Your friends are always here for you Wes

[millster]

... and now flash forward a few weeks...I left my previous doctor over his "old school" approach to medicine and his not really believing in Fibromyalgia as a disease, but rather a symptom OF another disease that was yet unknown. Many older doctors still believe this to be the case. It's not his fault, I just needed different treatment. So, I went to see my other doctor and she informed me "well, to look at your charts, you have lesions on your brain MRI. Plus, you would be an extreme outlier as a 28yr old male with Fibro"...So, I just got home from being stabbed in the back (spinal tap) to test conclusively for MS. Looks like we're not done yet and thus the saga continues. Part that really sucks is that I am supposed to lie flat on my back for at least another 8 hours and greatly limit my activity for another 72. That's darned near impossible for me. I'm the caretaker in my family. It's very hard to let my wife take on all of that.

[keithvibe]

Quote, originally posted by millster » I'm the caretaker in my family. It's very hard to let my wife take on all of that. I'm hoping for the best man.But once she gets a taste of that power... your pritty much well... um... _____ you fill in the blank. LOL

[BlueCrush]

Hey, Wes. Sorry to hear things aren't getting better. You have to let go of your preconceptions of you being the caretaker for a little while and let her take care of you and the family's needs. That is why she is with you, for better or worse. You're a little worse right now, so let her handle things. It will make her feel better knowing you need her to help take care of things. You will appreciate her more and love her more for doing it. If you want, when you feel better, you could always do something small and special for her to let her know you appreciate her handling things, like a nice foot rub or back massage or surprise her with a homemade candlelight dinner.

[lovemyraffe]

Wow, sounds like fun. Good luck Wes.

[millster]

Quote, originally posted by keithvibe »I'm hoping for the best man.But once she gets a taste of that power... your pritty much well... um... _____ you fill in the blank. LOLNah, not here. I found a great one. She's just having a hard time keeping my (removed) down where it belongs instead of up walking around trying to do things.Quote, originally posted by BlueCrush »Hey, Wes. Sorry to hear things aren't getting better. You have to let go of your preconceptions of you being the caretaker for a little while and let her take care of you and the family's needs. That is why she is with you, for better or worse. You're a little worse right now, so let her handle things. It will make her feel better knowing you need her to help take care of things. You will appreciate her more and love her more for doing it. If you want, when you feel better, you could always do something small and special for her to let her know you appreciate her handling things, like a nice foot rub or back massage or surprise her with a homemade candlelight dinner.Thanks, BC. Yeah, things aren't getting better but this should at least be one thing that points things in the right direction. And believe me, there are plenty of little things that get done. I still can't manage to just sit around, though.

[ColonelPanic]

Hang in there, Wes. May you find some answers to what ails you!

[tribalman]

do you need us to recommend some nice flash games to entertain you as you are on forced downtime?

[millster]

Quote, originally posted by tribalman »do you need us to recommend some nice flash games to entertain you as you are on forced downtime?No, trust me I have plenty of downloaded and recorded crime dramas to keep my attention. That and the fact that I can't keep myself laying down for more than an episode's worth of said crime drama, so...That has, of course, caused me to inevitably arrive at the point of one of the lesser desired side-effects... the "spinal headache". Basically, I have lost pressure in the spinal fluid due to them drawing it out and I get a wicked headache as a prize. Thought I was going to get away without one, but I wasn't so lucky. The real curiosity is that my symptoms are worse as well (has taken me nearly 10 minutes to type this and I used to type over 100wpm)... they follow the line of my usual flair-ups though so I think the fact that the weather is turning here likely has more to do with it than the draw. i think the timing is just coincidental. So again, thanks everyone for your prayers and well-wishes. If anyone is really interested I'll keep you apprised of any further findings as I know them.

[Kari]

Of course we are interested....I hope that you can find some answers soon!

[millster]

So since at least Kari said she would like updates, I'll update a bit.The Lumbar Puncture came back negative. In fact, my proteins were above average indicating that I have been taking good care of my central nervous system. Umm... yay for me? So unfortunately that spawns more questions than it answers. We have two hospitals here and I have been seeing doctors at both so my new primary care wants to get the rest of my diagnostics from the other hospital to add to what she said was already one of the largest charts she's dealt with (to be fair, she's a rather young doctor). Up next on the docket though will probably be blood tests for heavy metal poisoning, a few other potential neuro-toxic buildups that I cannot recall at the moment and a full round of MRI scans without and WITH contrast added this time. My last scans were done only without contrast so there is no way to tell if the brain lesions they found were new or old or if they were even the only ones. Some will only show up with contrast.So, summary... they have not ruled out MS, just that it hasn't yet built oligoclonal (sp?) bands in my spinal fluid if I do have it, there's a possibility it's heavy metal poisoning (bring on the jokes) but my doctor is 99% certain that it's an upper-neuro disease given my bizarre reflex pattern. And there we sit. I try to find comedy in the strangeness of all of this so picture this... relatively fit looking young man walking through the grocery store... just happens to swing his hand-basket right so that it bumps his thigh... this triggers the muscle reflexes in his leg and our subject falls straight to the floor right in the middle of the store. Thankfully, the baskets are thin plastic and fairly squishy so that saved my head from hitting the floor. Would have been embarrassing, but nobody seemed to notice. I just got up and went back about things. Nobody that was around said a word. So there it is from here... the weird continues to stay weird.

[BlueCrush]

Thanks for the update, Wes. I'll keep praying for ya.

[millster]

And around we go again...Upped my dose of Neurontin to nearly the level of an anti-psychotic. I now feel like I'm high all the time (maybe that's not SO bad). The pain has become manageable but is definitely still there. All of the other symptoms are just as bad if not slightly worsened by the perpetual high feeling. Anyway, I go in for another round of MRIs next Friday. They're starting me at 6:45AM and told me to expect to be done around noon. It's going to be a long day. This will, however, be the final say in whether or not I have MS. If these come back negative then I'm clear. It's something else. What that may BE is up in the air, but at least I'll know it's conclusively not MS.Of course all of this is happening as I am preparing to turn my one-of-a-kind Cobalt back over to the bank and finalize my filing for Chapter 7, thanks to my ex-fiance being an identity thief. Loverly...As my boss told me, "just enjoy the rollercoaster ride and never forget to say whee", so WHEEE!

[star_deceiver]

Hope they find out what's going on! Reminds me of this comic... Hope it all goes well

Attached files

[millster]

Quote, originally posted by star_deceiver »Hope they find out what's going on! Reminds me of this comic... Hope it all goes well Ha! Thanks, SD. I hope it doesn't come to that. They changed my appointment to 6:00AM, though. Told me I SHOULD be done by noon. That's a lot of time to spend in a tube with a large rotating, clanking magnet. But if it gets me closer to a diagnosis, shove me on in! On a crappy note, though. My bankruptcy is progressing. Well, that's the good part. i have all of the money to pay my attorney, I'm getting the paperwork done... it's good. The crappy part is that I had it all worked out with the bank to turn my Cobalt which I loved over to them because with my wife unemployed we decided it was most feasible for me to fix my old truck, drive it and just keep the Matrix. This means I would not be "re-affirming" the loan on the Cobalt in the BK. I had worked it so I could turn it over so that it was on my own terms. Again, i loved that car and it was hard to let go of something I had worked hard to keep and i wanted it on MY terms. I had just talked to the loan adjuster this afternoon. Tonight at 9:00, there was a knock on the door. I looked out and saw this kind of "gangsta" looking kid standing on my step and decided not to answer. That was when my son came running from his room and said "Ummm, they're taking your car. There's a truck out there with a white Cobalt behind it and there's no Cobalt in the driveway". I answered the door. Sure enough... I let loose on him but then realized "hey, it's not this guy's fault. he's just doing what the bank told him to. The bank screwed up". So i apologized to the driver who then asked me for the keys and offered to let me get my stuff (I had already cleaned it out about a week ago when all of this started) so I just asked him for my plates and thanked him for at least waiting until I was home. He thanked me for parking the car with the nose out at a tow-friendly angle. So anyway... why do i tell the GVC public about this? Because it's therapeutic. I don't want sympathy. I don't need it. i just want to talk about these things and hope that if anyone else is near to this point they can see that it can happen to anyone and not to get depressed about it. Life goes on. i look at it this way... when I come home at night from my job, which I LOVE, i come home to the most wonderful wife and son on this planet and THAT, my friends, is what counts. Material objects come and go but friends and family are forever. More people need to remember that.For the record, I DID leave a message for the loan adjustor after my car was gone... some of you have known me as the "mean moderator". Let's just say that I can be that way over the phone, too. Can't wait to see if he calls me back tomorrow. He knows my office is right across the street from his.

[lovemyraffe]

I'm wishing you all the best. I hope they figure out what is going on with you soon.

[ou.grizzly]

Prayers sent Mr. Millster!

[ramenboy...]

hey millsterdon't make it on here much nowadays, but keep your head up. things can only get better.

[keithvibe]

Quote, originally posted by millster »some of you have known me as the "mean moderator". HAHAHAThe noobs don't know about this... don't clue them in to it... LOLMean is an understatement JK mang.. you've been tough but fair.I've already expressed myself in a IM to you so I don't think I should say it again.The matrix is a better car then the balt anyways LOL As long as you don't get a floor mat wedged on top of the gas peddle, that is.

[millster]

OK, so I missed some of the replies here but I wanted to update everyone who might care, anyway. My MRI results came back inconclusive. I have minor arthritis and narrowing of my spinal canal but nothing that should result in my issues. Great.So I went to see another specialist after that. After a two hour appointment, looking over my family history as well as my charts, she's thinking it's Mitochondrial Myopathy (a form of muscular dystrophy). The biggest indicator for her is my family history. Mitochondrial diseases are passed along maternal bloodlines and my maternal Grandmother, my Mom and her sister have all experience SOME symptoms like mine. I have most of the markers to confirm the diagnosis, I'm just waiting on word as to whether or not the hospital here has someone capable of performing and properly reading a muscle biopsy or if I have to fly out to Minnesota for that one. Anyway, looks like things are winding to a close and I most likely know what I have. Sadly it's not curable or TRULY treatable although there are some reported "cocktails" that have some efficacy in cutting some symptoms. So we'll see, bit it's looking pretty "good" for this one. At least it's not going to kill me. Though as my doctor said, I may see times when I wish it would. And Keith, thanks! I needed that. I hope I've always been fair. I certainly try. As far as the 'Trix goes... yes it's a better car the the 'Balt. At least I certainly think so. We do have the hold-downs on the floor mats so I'm pretty sure it's safe.

[millster]

Well, some of you may have noticed another extended absence of "your favorite moderator" (I am, right?). Anyway, I finally have my diagnosis. It came down to Mitochondrial Myopathy or Fibromyalgia. Both present with much the same symptoms, neither are completely treatable and neither are curable at all. Given that I would have had to undergo more lumbar punctures and a painful series of muscle biopsies, I decided to forego the tests for MM. The only advantage to going through it at all would be that I would know if there was a chance that I could pass it along to my child. After speaking with my doctor and finding out the chance of the father passing the disease along is so minute as to be nearly inconsequential and confirming that even if I tested positive, my wife would still like to have a child knowing that we would just have to watch for any signs, I decided there was no benefit. My doctor performed the prescribed examination for Fibromyalgia and I fit the profile of someone with a severe early-age onset. So, I'm being treated as best as anyone can manage and functioning adequately. I had a pretty bad flair-up last week which put me into withdrawal from my antidepressant but a little help from my doctor has me on the mend from that. Now I'm working through another flair brought on by the weather. Just fatigue and pain this time. Enter caffeine and Percocet. In any case, thanks to all my friends here at GVC. It's been good to read what's going on with other people and the things people are doing. Keeps my mind off of feeling crappy. But I finally have my diagnosis and can work toward doing what I need to do to feel at least decent.

[tribalman]

i don't know if it'll help for either condition but when my mom feels crappy i give her a hug and it makes her feel better. can't hurt, right?either way, feel better, we all miss you and also/hug!

[BlueCrush]

Wes, You are one of the top 5 moderators here on GenVibe!!! Glad to hear you finally have a diagnosis. It's about time. Now you can focus on trying to manage it as best you can. Now go watch some funny videos, laughter is the best medicine!!!