The Power Of Comments

*This is a cross post from my Life With Heathens blog but I wanted to share it here as well. Some words and links have been changed around so it makes sense here.*

I've received some very humbling comments in the last few days on both this blog and our LWH blog. Usually comments are just short witty phrases to let you know a person was there. I've always thought comments were alot of fun and can't imagine my blogs without them.

The ones I've had here lately though have honestly set me back on my heels, which is a good thing don't worry. :) People have commented that reading about me and my family has made them want to be more positive and given them hope. That's such a powerful thing to say and I never expected to have it aimed at me. As I said, it's very humbling and appreciated more than those of you who comment could know.

You see, here at home my husband says I bitch, nag, and complain too much (even if I'm just talking about my day it's considered bitching). My kids look at me often in disappointment because I can't take them somewhere they wanted to go. Some days I sit here and do nothing but cry because I feel so worthless and like such a failure. On one hand I know it's not my fault and it's because of the fibromyalgia, peripheral neuropathy, no thyroid, metastic cancer, no adrenal glands, and the meds I'm on. When I think of that I'm proud of myself because I DO try everyday to be the best I can even though I hurt like hell. On the other hand though my family makes me feel like I'm a burden because I can't be the perfect housekeeper, the perfect runaround mom, the perfect teacher, or the perfect playmate. When I look at that side I feel like I have let them down and it hurts. They don't seem to care (specifically one member) but it hurts my heart greatly.

Then I see comments like the ones mentioned and I feel like at least something I'm doing matters to someone. Right now you have no clue how good that makes me feel.

As if that wasn't enough, I was checking in on my friend, Robin's, blog just reading and scrolling down when I came to this. It was so unexpected and put me in tears. I never knew she thought that way about me and it honestly made my whole month. Thank you again Robin for being such a great friend. I truly feel blessed.

So this post is just to let all of you who comment know that I appreciate ALL the comments you leave. It's like getting little happy notes in your lunchbox when you were a kid. lol. Thank you everyone who comments on this blog, our LWH blog, and our homeschool blog as well. I am forever humbled by your words.

I don't have any updates for you right now. I'm currently up to 12oomg of Neurontin and it's not doing anything so I'm sure that will be raised again next week. I see the Rheumatologist on Monday and I'm going to push for no more Elavil bull either. It's time to try something new.

Sis will be getting a mouthpiece next week in hopes that it will help her TMJ and I have to call and kick some arse because no one has bothered setting up her physical therapy (it's been well over a month now).

Thank you and blessings to all.

Hugz,Jo

Just Keep Swimming, Just Keep Swimming...

This is how I'm feeling right now. I'm swiming for all I'm worth right now but a floatation device would be a nice surprise. ;) Where do I start the updates?

Saw the rheumatologist again and all he really did was up the Elavil some more, tell me not to dwell on the pain or it will hurt worse (the response to me saying that if we can just ease the pain I can take the reins from there. WTF???), and poke me in all the spots that already hurt. lol. I'm honestly getting really sick of this Elavil crap. It doesn't work...for anything so let's get past it already and go on to something that WILL work. *sigh*

Also saw Dr. M again (every three weeks) and he upped the Neurontin some more which was my idea with him because at 700mg it feels like something is happening. Not sure what but it's something and that's better than what I've had...nothing. So the Neurontin is at 900mg right now with it going up to 1200mg by the time I see him again. I know it seems like alot but around 800mg is where they start diabetes patients who have nerve pain. I've still got at least another 1000mg that I can go. Woohoo. ;)

According to their scales I've lost a total of 8lbs since December. I'm not sure whether to believe it or not though when the scale here at home only shows a 4lb loss. Either way it's better than gaining more weight and hopefully within the next year I can lose 15-20 more pounds and be my old self again.

The sleep aids didn't help Sis sleep at all so we took her off them and made an appointment with a craniofacial center on August 7th. It's looking like she's going to end up wearing a mouthpiece at night to keep her from grinding. I just hate that the poor kid is in pain and I can't do much to help her. She's also now complaining of pain in her elbow as well. She says it hurts when she tries to straighten it. She's too young to fall apart on me dammit. :(

I have another appointment with the rheumatologist in August, another appointment with Dr M in August, Sis's appointment with the craniofacial center, Lil Man has dental work, and Vin has an appointment with a plastic surgeon to look at his nose. It seems the surgery to fix his deviated septum didn't go so well and now we have to figure out how to fix it. *sigh*

I'm starting to realize that the fibromyalgia and peripheral neuropathy are my two biggest problems right now. They are what leaves me in pain nonstop which in turn drains me of energy. I've visited message boards for both and to be honest, they are kind of discouraging. It seems that no one finds relief for very long before they have to start all over again. I just can't believe that at 30 years old I had to deal with two cancers (one metastatic) myself plus the MTC in the two older kids and now at 31 years old I have to deal with fibro and neuropathy pain!

Whatever happened to being healthy and enjoying life while you're young? If this is my life in my 30's then what the hell do I have to look forward to if I make it to my 40's and 50's? This just plain sucks and I'm going to keep trying to find relief from this pain so I can enjoy my kids and enjoy my life! I didn't make it through cancer just to end up a pain filled lump on the couch dammit!

Okay, rant over. I'll update again after we have all our appointments. Oh and by the way, I started following the traffic to this site and it's honestly very interesting. People from universities, hospitals, doctor's offices, and just random Google searches are reading on this blog. It's a little flattering and I hope that people will start posting comments to let me know they were here.

And The Wheels Go Round And Round....

What do I have for you this month? Why more medications and more diagnosis of course. Fun times. Good stuff. Oh who am I kidding? lol

I took Sis to see Dr M yesterday because she's been complaining of pain in her jaw when she eats, yawns, and so on. So of course since she is MY daughter it can't just be some lil ole thing. No no no it has to be something odd that Dr M hasn't seen much of. Sis has the beginnings of TMJ and has to now be treated for that. TMJ in adults is at least semicommon. I think everyone knows someone who has it but in a kid?? Not so common. We think it's from her grinding her teeth in her sleep (bruxism) and we're hoping to kind of head it off before it gets bad.

She will be starting TMJ physical therapy in a few weeks and the doctor has given her medication to try for two weeks to see if it helps her sleep deeper so she doesn't grind so much. I think our next step will most likely be a form fitted mouthpiece.

So that was fun enough but then my appointment was right after her's. This means she was the opening act in the program and I was just the old chic falling apart bringing up the rear. lol. I told Dr M that the Elavil isn't working for the fibro nor is it helping me sleep. It is however making sure I don't lose any weight. Bastard. The Elavil not the doctor. I'm also still having alot of pain in my hands and feet that nothing is taking care of at this point. Add to that migraines and the beginnings of depression because of some crappy stuff that happened this month (that I'd rather not post about) and you have what was on the list for the poor guy to take care of.

He told me to stay on the Elavil for now, start back up with the Neurontin for the pain in my hands and feet, start taking 150mg of Zoloft, the migraines may very well be from altitude sickness (from when we went to Colorado last week), and hang in there. I told him I'm hanging... dangling maybe but still holding on. :) He also said that he thinks I have peripheral neuropathy (sounds lovely doesn't it? Yep, that is how I feel every stinking day) on top of the fibro and carpal tunnel syndrome and that is why I have the pain in my feet and hands like I do.

So if you have been following but get lost in all the BS... I have MEN2a, medullary thyroid carcinoma (metastatic), hyperparathyroidism, fibromyalgia, peripheral neuropathy, mild depression, carpal tunnel syndrome, adrenal insufficiency due to surgical removal of adrenal glands (because of cancer), no thyroid (due to surgery because of cancer), nerve damage in my neck and right shoulder (due to surgery), and right now I have a crick in my neck. LMAO.

Will the 80 year old woman who took my damn body please give it back?! I don't like having your body and would like to feel like a 31 year old woman again. I know you're enjoying the libido, the energy, and the great memory but in the meantime I am thinking that the lack of libido, lack of energy, crappy memory, and long list of problems completely sucks.

Thank you.

Meanwhile, Big B is doing great and has no current problems. I have a feeling the poor girlchild is going to take after her mother and Big B may get off next to scott free. My youngest of course will one day get beat up for being the only one of us who is negative. LOL

Take care and thank you for continuing to read.

I hate this blog...

I really do. I hate coming here to post and I hate reading over the old posts. There's never much good news to talk about and it reminds me of the bad news. I know what you're saying (if anyone even reads this thing at all anymore), you're saying "Well then quit blogging here" and I thought about that. If I quit writing or took the blog down though then I would have failed at the whole reason I started it in the first place.

It's here to document our life with MEN2a, that's true but it was also started so that no one else would ever have to type "MEN2a" into Google and see nothing but medical links. It's here so that people newly diagnosed with this disorder can see that there are others out there with it as well. Real people with real lives just like them. I hope it helps them and makes them feel less alone because this is definately a lonely disorder.

So anyway- Calcitonin levels on the kids came back barely traceable meaning that at this point we consider them cured of medullary thyroid cancer! We will still check them yearly just to be safe but we can breathe a sigh of relief none the less. Their 24hr urine and calcium levels also came back normal so no adrenal cancer or problems with calcium levels for Big B this time. Sis had to have her Levothroid raised again though which isn't a big deal. She is now up to .125mg and Big B is at .150mg of Synthroid.

Me on the other hand... I'm still a train wreck. My calcitonin levels are back on the rise again. I knew it was going to happen but I think a part of me was holding out. It's still very low though so I've still got time. My intact PTH is higher than it's ever been which caused a lively conversation between me and the endo. He has basically admitted now that he was wrong before. The last test they did here my intact PTH was supposedly "normal" and he felt that the previous two tests in Georgia were wrong. Well now my PTH is over 1300 so he feels the last test here was probably wrong. *eyeroll*. What is he going to do about it? Nothing of course. He feels we should leave it in there since it's not making my calcium skyrocket. My calcium was at the high end of low as well but no follow up bloodwork to keep an eye on it.

The verdict? FIRED!!! My life is too short to deal with bullshit plain and simple. The tumor in my intestine? No clue. I took a disc copy of my ct scans from Georgia to him so he could compare them with the ones here and we could figure out once and for all if there is a tumor or not. All I got in return was make a copy and he'll have radiology take a look at it. I'm glad I don't have a progressive cancer for crying out loud!

So anyway- my 24hr urine came back fine so no signs of the adrenal cancer coming back. I had an appointment on May 17th with a rheumatologist to be tested for fibromyalgia. The verdict on that? I have fibromyalgia. In some ways I'm not phased one way or the other by the diagnosis. In other ways, I'm glad to at least have a diagnosis so we can start trying to take care of my pain. I've been in constant pain for almost a year now and it has sorely worn on me to say the least.

The rheumatologist also said that I have to reduce my stress because it is causing the pain to be even worse and damaging me (stress not the pain). He said he didn't care what it took but stress must go down. So what has my family done since to help? Not a damn thing. The kids still take turns upsetting me and stressing me out and my husband is the worst of all. I honestly think the man could care less whether I live or die. There is no feeling there at all and definately no care to help reduce stress for me. He is just as rude as ever.

I still can not for the life of me lose weight. I lost a total of 4lbs but the new meds I'm on have caused me to gain them all back. It's hell being in pain, miserable, AND fat. So you see, again nothing great to post about.

The wonderful thing though is the results for the kids. I am more than happy with those results and will gladly trade me having crappy results for them. It is well worth it. Having my kids be healthy and cancer free means more to me than any diagnosis I could ever get for myself.

Well I can now add one more cancer to the list of ones I don't have. I do not have cervical cancer which honestly surprised me. At this point I just figure I have whatever they are testing for until I get the actual results. lol. No surprises that way and if the results come back good then I have a reason to celebrate! :)

The kids had their first appointment with the pediatric endocrinologist yesterday and I must say I am VERY happy to report that Dr. K is even more than I had hoped for! She is a wonderful little lady, patient, and knows what she is doing. My kids are in good hands with her. The only thing that stunk about the whole thing was trying to find a parking spot. lol. OY, you'd think we lived in New York or something as long as it took (half an hour I kid you not!). They were very understanding though and everyone in that office is a sweetheart. I'm so happy that Dr. M helped me fight to get the children in with her (she isn't on our insurance so we had to have special permission). The kids even liked her and were completely comfortable.

Speaking of Dr. M, the man is amazing. He has so far had to refer us to several other doctors for various things and everytime it has turned out great. He refered my husband to a surgeon for his deviated septum and hubby came back more than happy with the guy. Dr M suggested this ped endo for the kids and she was beyond what I had hoped for. Out of all the doctors I could have chosen out of our insurance book I honestly believe the Fates gave us Dr M. Maybe someone higher finally decided we deserved good care for once. Whatever the reason, I am extremely thankful.

Something funny that happened last week- months ago Dr M had referred me to a doctor for my cervical cancer check. I ended up losing the paper without ever remembering the name on it. Last month when I made the appointment finally I picked out of the insurance book, at random, and was honestly just given the doctor who would be available at the time. Lo an behold, it was the exact same one Dr M had suggested before. How is that for odd? She ended up telling me that Dr M is a very good friend of her's and was surprised he didn't refer me. I told her that I think he did I just didn't know it. lol.

Finally I have had a chance to see a neurologist and the diagnosis is... no nerve damage or disease but the pain in my extremities is nerve pain. The problems with my neck are definately nerve damage. What can be done about all the pain? Nothing but pain meds and trying to control the pain. He said I will always have this pain, they can't fix it, and he gave me a script for Neurontin. I'm to follow up with Dr. M to have the dosage raised as needed.

No Doctor's Month
February was my no doctors month. I'm tired of it all. I wanted one month to feel semi-normal again so I refused to see anyone for this entire month. Good part was not having to go to appointments constantly but the bad part was I spent a month in pain and sick.

The pain in my limbs is now pain everywhere but especially in my hands/arms, feet/legs, hips, upper back, and shoulders. Sleep comes and goes although its going more and more since I quit taking my Elavil. That's another story I'll tell in a second. Anyway- the pain around my scar in my neck is worse too as well as my right shoulder. Dr M is going to have a total mess on his hands when he sees me this week. And I don't have more pain because of quitting the Elavil because the pain was there before that.

Someone mentioned fibromyalgia to me but I have no clue. Honestly? Does it really matter at this point? I mean, what is one more diagnosis in this clusterf**k I call my health? I've just come to realize that MEN2a comes with alot of things that are known and unknown so be ready for anything.

The reason I quit taking the Elavil is because I think I'm gaining even more weight. All my clothes are tight and while everything of mine is getting tighter, my husband seems to be dropping weight like it's nothing. I want to be happy for him but at the same time I want to choke him. LOL. Seriously though, it's just hard to see him losing while I'm gaining and having to roll through my head that I can't lose the weight. It's led to several whiny crying sessions on my part lately to say the least.

I asked a few questions on the medullary cancer group I'm on and everyone was wonderful. I found that quite a few people have had nerve damage and pain after the neck surgery like mine. Unfortunately they all said mine sounded much worse than theirs but at least now I know I'm not a total freak. Another lady also said that you can lose the weight contrary to what doctors say. Of course, she also talked about being on higher doses of steroids as well. I'm on about as low as I can go and I just gain. It's not because I eat alot either because my kids eat more than I do and I've never been a big eater. As far as exercise goes, it's hard to do much when your hips feel like someone hit you with a sledgehammer everytime you get going or your hands stiffen when you hold your bike handles or you have numbness in your shoulder that after five minutes makes you drop anything you might be holding.

This crap sucks! I'm not saying that in a poor me way either. It sucks for anyone. I'm very thankful to be alive but I'm not thankful to be a 31 year old woman who feels like she's almost 90. I have too much to do in life. I don't have time for aches and pain.

March will be busy. I will actually be turning 31, I have my appointment to get checked for cervical cancer, appointment with Dr M, the kids have their first apointment with the ped endo, and I finally have my appointment with the neurologist. All that AND I homeschool too. Busy busy but I think that is what keeps me semi-sane.

Blah blah blah...

Sorry, I haven't felt much like updating lately. Everytime I get ready to I remember that I hate all this crap and close the window. It's also very hard for me these days to post without breaking into a string of curse words no matter how hard I try to keep this blog nicey nice.

Let's see- my CT scan results are still up in the air. The endo here says that their two scans reveal no tumor in the small intestine so until I pay for the CT films to be shipped here from Georgia then they aren't going to do anything. As far as they are concerned, Georgia screwed up. Personally, I don't feel like paying money for scans that they could just order themselves to look at so I haven't bothered. I'm in a "piss off" mood right now as far as the endo is concerned. Not sure why just am. lol.

I had Dr M (our general doc) rerun all of my bloodwork and it showed that my Intact PTH was at something like 127 I think. In other words, still high but not much above the high end of normal. I called my old endo in Georgia to see what she thought and she said that maybe the adenoma they put in my arm completely died out and my levels evened out or it died out enough to become almost normal. The endo here just basically did the Georgia must have screwed up thing with that too. Hmmmm maybe that's why I'm in a piss off mood with him.

Dr M told me he read this blog which just endeared me to him even more. Most doctors blow you off or think you couldn't possibly have anything of interest that they don't already know so why read it. He read it and was worried that there was a misunderstanding. Would you believe his nurses even apologize when they forget to do something??? I know, it's amazing but now you can see why there's no way I'm ever leaving this practice and doctor. lol. Seriously though, he called me himself with the bloodwork results, talked to me about some things he's read, and even worried over me and a cold I had. It's really nice to finally feel like someone cares.

Anywho- Big B (my son) needed his Synthroid upped after his bloodwork came back and he is actually within the normal range on his calcium. It's low normal but we'll take what we can get with that one! :) Sissy came back fine on everything and my thyroid levels and calcium were fine as well.

I actually got the kids in with the ped endo I wanted them to see thanks in large part to Dr M's office. His office had to put the request in with the insurance and once they did that we were approved so now the kids have an appointment with the ped endo everyone raves about in March. Until then, Dr M has said he will do the kids' bloodwork every 6 weeks for me so we can keep an eye on things until the ped endo, Dr. K, takes over.

Other than that- I start physical therapy today, I have an appointment with a neurologist in March, the pain in my neck and shoulder is getting worse, the pain in my limbs is getting worse, I'm having constant migraines, and I may actually finally be getting depression but who the hell knows at this point.

Nice update eh?