Long Time No Post

I have so much to post about I just don't have the energy to do it. I'm sorry.

Let's see what is new since last time...

-I've had several ministrokes.
-I've had memory loss and problems "finding" my words since the ministrokes and a possible mild stroke.
-I won my Social Security Disability hearing which is bittersweet.
- I have a swollen/inflamed/enlarged lymph node on the right side of my neck that is either pressing on our wrapped around my carotid artery.
- I now have the joy of giving myself B12 shots weekly for one month and then monthly after that.
-I can't eat without getting sick now.

Since the middle of July I have been having these "episodes" where I get sudden jerking, then numbness and tingling down the left side of my body. It usually wasn't a big deal and I honestly just mostly ignored it. That is until I had a bad one at the end of August that sent me to the ER. I had just layed down because I was feeling very tired when right after closing my eyes my left arm jerked quite violently. Immediately after I started feeling this creeping tingling and numbness spread from my face all the way down to my foot. Needless to say it scared the hell out of me.

By the time we drove the 45 minutes to the ER the episode was pretty much over and even though all my symptoms matched a TIA and even though all the doctors and nurses said TIA AND even though I was having problems pulling up words to finish my sentences... they sent me home. Needless to say that made the stubborn side of me win out and I didn't go back for the following two I had after that. I should have I know. I just didn't.

As I said, I have been having problems "finding" my words and finishing my sentences ever since that attack in August. It of course got worse with each following attack and almost two weeks ago I had a period of time where all I could do was sit and stare without even blinking, then numbness, and then I had trouble talking for the rest of the day. Yes, I told my doctor about it. No, he didn't do anything. Yes, I am hiring a neurologist.

Bottom line? I'm going to fucking die before anyone does anything. Seriously.

Some people know that my doctors advised me to apply for Social Security Disability back when it was clear I had nerve damage to my neck and shoulder after the second surgery plus other things starting to go wrong. I applied back in June 2005 and by October 2005 they had denied me. I appealed that one only to be denied again in April 2006. I of course appealed that one and hired a lawyer. Social Security was not basing their denials on my medical evidence or even by anything a doctor who was even remotely familiar with my medical problems. They just denied me pretty much so I would give up and go away.

My last hearing was on September 12, 2007 and let's just say that the judge didn't ask the vocational specialist any questions and it only took me two weeks for her to rule in my favor. That is bittersweet because while I'm glad the battle is over and I can finally help out my family, I'm only 32 years old and being considered disabled wasn't one of the things I had on my To Do List. I'd rather be healthy and be able to chase my youngest child around. I'd rather be training for a marathon and proving to myself I can run that far. I would rather be doing anything other than sitting here waiting to collect a small little check each month that won't even pay my mortgage. Something is better than nothing and I AM very thankful, I just wish I had worked better jobs when I was healthy so I had something decent to draw on now.

So we are just waiting for the Notice of Award that tells me what I will get each month and how much I will get in back benefits for the last two years. Any money that comes from back benefits though is already spent as we need a new water heater, dental work for Lil Man and I, credit cards to pay off, and bills to pay. Sounds like tons of fun doesn't it? Woohoo look at us live it up! ;)

At my last endocrinologist appointment, I told her about a lymph node that has been quite large and painful on the right side of my neck for awhile now. It doesn't get any smaller and it never goes away so it had me worried about it being new cancer. Once she palpitated it she was able to tell me that it's actually either pressing on or wrapped around my carotid artery. She couldn't tell me though whether or not she thought it was cancerous. To find out (and because it's that time again) I have to take a two day Octreotide Scan like I did back in 2005. Wherever I light up like a Christmas Tree that is where the medullary cancer is. Maybe it will even show me if I have a new adrenal tumor forming.

As soon as we get the results back on that then I will have surgery to remove the lymph node. The only scary parts of this surgery are that it's so close to the carotid artery and I don't want to be flayed open like a fish again. This might also explain the ministrokes also knowns as TIA's (transient ischematic attacks).

The last three times I've had my B12 checked it has been very low so my endocrinologist tested me for pernicious anemia. Because I'm having malabsorption problems that keep getting worse as well she tested for celiac disease too. The anemia had me wondering but I knew I didn't have the celiac disease and I was right. Both tests came back normal though so no helpful news there.

Two weeks after that appointment I had one with Dr. M where I told him that I had developed two sores in the corners of my mouth (I don't get coldsores nor do I have the herpes simplex that causes them so that was odd for me) that refused to heal plus the pain in my hands and wrists had moved up to my elbows making me want to gnaw my arms off! My feet and legs weren't doing much better. After considering my low B12 levels, the dual sores, and the pain he decided we should try a B12 shot and see how it makes me feel.

ANYTHING that might take away some pain or make me feel better is something I'm going to try and he knows that. LOL.

When I saw Dr. M last week I was happy to tell him that the pain in my limbs had eased back off, the sores healed three days after the shot, and I wasn't getting sick as often as before (stomach wise). This was very encouraging to him so we decided that for the next four weeks I will get a 1000mcg shot of B12 in my arm and then once a month after that. Dr M said that it takes six to eight years to develop a B12 deficiency so one shot wasn't going to cure everything but at least now we know we have a chance of fixing a few things. The hope is that by kick starting the B12 in my system and liver that it can make my levels almost normal.

Why am I giving the shots to myself? Well because I've had a huge fear of the day arriving when I have to give myself the emergency steroid shot so I figured the only way to get over that fear is to conquer it. The nurse showed me how to do the shot, I did it, and it wasn't that bad actually. Now I also won't have to drive into town every week just to have them stick me. I also can enjoy grossing out the kids because you know they're going to be curious and watch! haha

So that's about it for right now. My scan in on October 30th & 31st and hopefully I will know all I need to within a week after that.

The kids are doing great and have been very healthy thankfully. My hope is that I'm taking all the medical problems so that they don't have to. I want nothing more than a healthy life for these kids and I hope they get that.

August 20, 2007

I finally received the results of my ultrasound from the doctor's office yesterday and supposedly it showed nothing. That's right, a big fat NOTHING. Meanwhile, the pain has gotten even worse, the painkillers aren't touching it, I'm constantly nauseous, and I'm running a low grade fever nonstop. :(

Bright and early tomorrow morning I have an appointment with my doctor and then I guess we go from there. I think at this point I'm going to ask to be referred to a gastroenterologist and see if they can figure out what's going on. Everything I've read thus far is telling me that there are a ton of tests I should have done BEFORE a colonoscopy so I'm not willing to just rush in and have them shove that camera up my ass just yet you know?

All I do know is that I'm a wreck and would probably welcome ten fibro flare ups if it meant this other bullshit stopped. It just gets real old is all. I'm sick of being sick! Time for some of this health crap to get taken care of so I can actually enjoy my life.

Lyme Disease and Pediatric Medullary Thyroid Cancer

I received two emails recently and wanted to pass on the information from them in hopes that it will help someone else out there.

Michelle from the Online Lyme Disease Support Group asked if I could share their link which I'm more than happy to- mdjunction.com/lyme-disease. Michelle says "MDJunction is a health community focused on becoming a free center for Online Support Groups". So if you have Lyme Disease or know someone who does please take the time to check this group out. No one should have to fight alone.

I also received an email from my friend Mary asking if I could pass on some information that was shared on our Medullary Thyroid Cancer group. We have all watched the progress of the Zactima trials for a few years now but them doing a trial study on children is new. I have seen some fantastic results thanks to Zactima and honestly wouldn't hesitate to use it myself when the time comes. Here is the post by Jan Halzel...

"FROM JAN HALZEL - THYCA MTC LISTSERV FACILITATOR:
Hi to everyone, I just wanted to take a minute of your time to tell you more about the new Zactima (zd6474) study which is about to enroll its first patients. The study is for children with hereditary MTC. The trial is being conducted asa collaborative effort between Dr. Wells and the Pediatric Oncology Branch of the National Cancer Institute in Bethesda, MD which is just outside of Washington, DC. All of the patients will be admitted to the NCI Clinical Center. However, some of the patient's treatment can be managed by their local doctor, therefore travel to the NIH will not be as frequent as with the adult trials. It is expected that help with expenses will be provided. Enrollment will be open to children who live in the U.S. or Canada.

As most of you know, Zactima has shown promising activity for hereditary MTC in adults. Unfortunately, there are also children with advanced MTC who need further treatment. This trial is intended for children with advanced local or metastatic MTC who have been advised by their doctor that they needfurther treatment. To qualify for the study, they need to have a measurable tumor that is at least 2cm (or 1cm if on a spiral CT). If you know someone whose child might benefit from this investigational study, please be sure to pass along the information.

This is an important opportunity for children with this disease. The trial is scheduled to open at the NIH during the week of July the 9th. For more information, please feel free to contact Dr. Wells directly at 919.201.0310 or via his NIH email address which is wellss@mail.nih.gov.
JanRachel's
momRachel's
somatic mutation M918T (sporadic)
currently on ZD6474. "

I would like to add that Dr Wells is an amazing man. He is the most caring doctor I have ever known and he cares more about his patients than anything else. If I were to ever lay my childrens' lives in a doctor's hands, it would be his.

New Endocrinologist- Again

I did see the new endocrinologist in May and she seems much better than the one I saw when we first moved here. She even has another MEN2a patient! It was exciting to hear (in that morbid sort of way) that the kids and I aren't the only MENnies in this area.

She had me do a blood draw for calcitonin, TSH, intact PTH, Vitamin D, B-12, calcium, and something else I can't remember. I just had all this done in February but I can understand her wanting fresh results for her own records. Besides, I'm so use to blood draws at this point that it doesn't bother me at all anymore.

The calcitonin came back pretty much the same as before which is good, my TSH levels are good as usual, my intact PTH was actually close to normal for once so that was exciting, calcium was really good, and the only problems were with B-12 and magnesium. Dr TE just told me to try taking a daily vitamin and see if that helps.

I'm very glad I listened to Dr. M and made an appointment with this endocrinologist because she seems like the kind that cares and will listen but also knows what she's doing and can take control of your care if need be. I like knowing that she knows about MEN2a and will know what's going on with me.

Now all I have to do is find a new rheumatologist (because of Dr Jerk I've been weary of going to another one) and maybe look into an oncologist again.

Insurance Companies Suck Too

I filed a formal complaint with our insurance company (Lovelace Health) on Dr. Jerk Rheumatologist in hopes that they would actually look into it. Of course, I was wrong. All they did was have one of their people go to Dr. Jerk, ask him if he "fired" me, he told them "no", and that was it. They believed him and basically told me too get bent. :(

He of course didn't write down in his notes what he said to me so he was able to lie his way out of the whole thing even though Dr. M said the notes that were sent to him basically stated Dr. Jerk was finished with me! They didn't bother to ask Dr. M any questions. Of course, why would they because then it would mean they were actually doing something.

That creep sat there, looked me in the eye and said... and I quote-

Jerk- "Well we won't need to see you again unless something new comes up"
Me- "So what does that mean? So I don't make anymore follow up appointments?"
Jerk- "No, there's nothing more I can do for you. Okay, so you don't even need to go by the window on your way out. Good-bye"

That is exactly how the conversation went and that jerk lied his ass off when questioned! I know he's ignorant but it's upsetting to know that Lovelace Health doesn't care about their customers either.

I sat in my van and cried for TWO HOURS because of that asshole and when I file a complaint I pretty much get told just to shove it! Nice, I'm very happy to know that each month money is being taken out of my husband's paycheck to pay for insurance through this company!

Until some of these doctors pull their heads out of their pompous asses we as patients are damned if we do and damned if we don't.

I had an appointment with a new oncologist that I cancelled when I received the insurance company's stupid letter. I'm just not going to do it anymore. I'm finished. They win. I'm through being a good girl and going to all these doctors just to get treated like dirt because they think they know it all.

Unless you are a doctor that specializes in MEN2a and/or medullary thyroid cancer then you don't know even a quarter as much as I or most other MENnies I know do. WE study more than just a chapter on it. WE live it every day of our lives. WE are the ones who do the research while you sit back in your chair with that smug look on your face bluffing your way through our appointment. WE educate ourselves to understand this because doctors like YOU could care less.

It's because of YOU that most of us have been through botched surgeries, problems with medications, scary trips to the ER, and left in pain. It's because YOU think you are the be all end all. Here's a little truth to shove down your cocky self-righteous throats... you don't know squat! You know nothing and your manners with patients suck even worse than your attitude! But hey, what do you care? No matter what you get your money and isn't that all it's really about for you? It surely isn't because you want to help people. Every single one of you doctors with your heads up your asses make me sick!

To the doctors who truly care, who actually listen, and who give us even just a little respect and credit for knowing what we're talking about as well... Thank you. Thank you from me and my children. You are too few and far between which is a shame. Knowing you are there though helps people like me not just give up hope. Thank you for that.

Thank you to Dr. Jennifer Lawrence for crying when she gave me the MEN2a results on my children. Thank you for caring for them during our search for a ped endo. Thank you for trying to talk me out of going to Tampa for my surgeries. I'm sorry I didn't listen to you.

Thank you to Dr. Samuel Wells for all the phone calls two years ago when we were trying to figure out if I was eligible for the study. You always cared first and foremost about how the kids and I were doing and even when we knew that I couldn't be in the study you still cared. That meant alot.

Thank you to Brad Ridge the PA at Valdosta Family Medicine Associates PC. If it wasn't for you who knows when the MEN2a and cancer would have been found. You literally saved mine and my childrens' lives and for that I am forever thankful. Being upset over a pregnancy test seems so silly now. ;)

Thank you to Dr. Christian Meuli for always listening to my ideas, thoughts, and suggestions. Thank you for letting me be a part of my healthcare. It's because of you that I stand up for myself and my kids with other doctors. It's because of you I know we deserve great care. Thank you for that.

I know that anytime someone Googles any of those names they will be led to this blog and hopefully they will read about the great care providers I listed. If only there were more doctors like these in the world it would make things so much better for us and them both. Of course, if all doctors were like them then I couldn't say how special they are now could I? ;)

Okay, Scratch That

I was in love with the blog title "Life's A Faught" until the teenager came up to me, read it, and then turned to me and said "Mom, you DO know that it sounds like someone saying Life's A Fart in a New England accent right?"

And ever since all I can think is "life's a faught...life's a fart". UGH.

So I'm just going to go with what I had planned on calling it which is Cancer Is The "Easy" Part... It's Everything Else That Is Killing Me!!

Enjoy and I promise, no more yo-yo blog titling. ;)

Please Keep Her In Your Thoughts

*Update- She's gone. Patsy passed away around 9:30 eastern time this evening, Sunday. Her breathing slowed and she was gone within a few minutes. She was wrapped in love, to be sure.

A very special mama from a few of the parenting boards I use to frequent might be losing her fight with lung cancer tonight- Patsy.

She has always been a bright light on the mama boards and despite being dealt such a crappy hand (the cancer) she has been such an upbeat person through her struggles.

Patsy has seven children and they just really need their mama for awhile longer so please pray, keep her in your thoughts, light a candle, or whatever it is you may do in times of need for her. I'm not very good at this since as an atheist I don't pray but I'm not beneath asking those who do pray to for one of their own. She is deeply in my thoughts though and my heart breaks with each tear I shed and believe me, this woman is so special that if you even knew of her you would be crying as well.

Patsy- To say I admire your strength would be an understatement. You are amazing and I hope to someday have even half of the grace and class that you have. the strength you gave me through watching you. You are the epitomy of strength and you will always be one of my heroes. I am proud to know (even if not in the flesh) someone as wonderful as you. Thank you.

Fight mama, I know you're tired but just keep fighting.