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Long Time No Post I have so much...

Posted Aug 26 2008 1:42pm
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.
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