Mood:
don't askNow Playing: Day 663-The Final Road To Survival
My Tuesday didn't end until this Wednesday morning around 9:30am. It was like a nightmare that I hope to never relive again. I don't feel the need to get into everything but let's just say between the darn Drano getting stuck in my upper intestines, becoming dehydrated, a ER visit to get some much needed fluids, waking up around 3pm feeling super dizzy then having a very low blood sugar reading this evening making my doctors scramble to get it back up makes for one hellish 48 hours.
If that wasn't enough I still had to fit in the rest of my Hell-In-A-Jug treatment today. I must start forcing more sugar and more Gatorade on a daily basis so I don't keep getting into trouble. I had a smashing headache caused by some outrageous stress that I quickly put a lid on followed by more Drano so I didn't go from tremors into seizures. Luckily I was able to sleep in between all the bathroom breaks catching up on a few hours here and there.
I should sleep extremely well this evening due to sheer exhaustion. I have been keeping close tabs with two of my specialists who are trying to get my body to bounce back a bit with my blood pressure, blood sugar, pounding headache, head pressure, nerve pain and learning to tune out unnecessary stress that's interfering in my overall care.
I have learned from having this blog that there are people who are called friends located everywhere. Thank you to those who look after me and my well being. Most I have never met but hoping to meet a few friends next month as they come in town to visit. I never expect those who don't walk in the same shoes with any disability to understand what its like to be sick so I continue learning to tune it out and looking straight ahead. I have a life and although its been altered due to being sick and a stack full-arms length of medical records and over 16 specialists with medical facts I don't feel the need to continue forcing others to understand my condition. Those who question my specialists are welcome to reading the facts and hundreds of medical reports. I worked since I was 16 years old and paid into the system in order to provide myself some sort of assistance if I became disabled. The government does not just give out disability freely and they take each individual case very seriously. My SSD approval process took over two years due to a mountain of medical records and testimonies from numerous physicians. I would had continued working and did so until it become too dangerous for myself and others. I was then advised by three specialists that I had to stop working. My SSD case was overturned a little over two years later in court due to numerous connected problems with damaged nerves from my Idiopathic Gastroparesis. Anyone who thinks not working is fun or uses the system being disabled as a free ride obviously never found out what its like being sick. Gastroparesis has no cure nor does many other medical conditions that society suffers from but the last thing we need as patients is to be chastised for something we can't control. No one, no matter what disability should ever have to suffer from discrimination. I was discriminated against today and it was the lowest thing anyone could ever do to another individual. I choose not to blog what was said due to others who might get offended or take high offense. I got enough text messages and emails through out the day and have decided to take the high road and move past the hurtful words.
I answer online emails twice a week, those who know me best can vouch for this unless I am flagged on something otherwise. I do my blog on a daily basis even days like today when I am very sick and weak so others can keep up with how I am doing and feeling so I don't have to put hours into being online when I need to take that time to rest. Its also a way for me to heal emotionally and a way to keep up with my progress. If any of my experiences help others then I see nothing but good coming from my blog.
Its been a very long day with a few important lessons that been learned. The main one is finding out that support comes in many forms and from all walks of life. Thank you for being supportive! Thank you for being honest. Thank everyone for being 'YOU.' 
cheeky
Let's not go there on that one! Hahahaha! Let's just say Dish Network will be out tomorrow putting back together the mess that started while replacing the old entertainment centers and rearranging the living room. Hahahaha! I also had to run a few errands, mail out some forms for SSD Medicare, etc, etc, etc. This just wasn't the day to have any problems. That is until you wake up as you place your hand to your chest and ask yourself, "Is my heart still beating?" 
I received the QMB forms to have the state pay for my added Medicare Part B coverage that I must now buy due to my not so wonderful insurance company named Medical Mutual making mandatory changes. Now Medicare will be my primary insurance company starting March 1st while Medical Mutual will only be paying up to 20% of all claims. In layman terms that means barely if anything. There are always things lurking right around the corner when one suffers from a chronic or terminal condition. Honestly I am lucky to now be used to it. Just part of the sick game. I don't sweat the big stuff anymore and instead do what needs to be done and do it quickly so I can move on with my life. Same with stress and drama. Been there. Done that. Not worth it so now I focus on me, my health and happiness. The fur gang couldn't agree more!
bright
It's Super Bowl Sunday!
Here's to a better day!
celebratory
WELCOME TO THE NEW YEAR 2012! 
You know what I love most about life? That when you are given another day to live you are also given another day to start on a clean slate. Life is great because when you wake up you are given another chance. 
My Gastroenterologist has a file on me now the size of a encyclopedia. We all laugh and make light of it because sometimes no matter how bad life can gets it still requires laughter. She explained they are going to electronic filing via a computer system by the end of the year. I feel sorry for whoever has to put my files onto computer format. YIKES! My GI doctor only ran a bit behind today but otherwise hes always on time. I only waited around ten minutes before he came back in the room which was good because it was too nice of a day to sit in the doctors office. He hasn't seen my cane yet so its been quite awhile since my last visit. I had to cancel the past four appointments due to being sick. He was aware of my past emergency room visits however he wasn't regarding my concussion. We did go over MS and my other Gastroparesis complications. He told me to make sure I was aware there is no turning back with my unique medical situation. He also asked how I was mentally. I replied by saying, "I always do better knowing. No matter how bad the news its still important for me to know what I am facing that way I can accept things at face value. I don't do well when things are hidden from me." My doctor shook his head in agreeing. 
My GI doctor altered a few medications which leaves me minus two now off my list of eight. I can still use peppermint oil at night on a piece of paper towel near my couchbed since I am not digesting it only inhaling it. He said, "I think you learned that after your last surgery when they used it to help your nausea." I told him I am on my second bottle and so far I feel it helps a bit at night when I am sleeping. The MS symptoms were there for quite awhile but agreed it takes time to put all the pieces together and although things haven't changed nor will change at least there is a name to put on the symptoms. Gastroparesis can sure cause all sorts of complications and other connected problems. I now fully believe once again anything is possible with GP. Expect the unexpected but as he said, "Don't expect it to get better. There is no turning back from here." I must take that information and now keep it to heart. If I want to go out on a good day and do something I will because I can't predict tomorrow. 
This evening I finished putting up the new curtain rod and relaxed with the fur kids. They are the best and I don't know what I would do without all my buddies. 
We waited around ten minutes before my doctor came in the room. He is always nice in apologizing for the wait. I have been seeing him a bit over eight years now and he knows my unique medical case inside and out. Its a huge relief knowing I have complete trust and faith in my amazing team of specialists. He went over all of my current medications then we discussed all of the tests I had done at the hospital. I am still dealing with the post concussion syndrome which can linger for months. Since I already have other existing medical problems it will take me longer to fully recover than someone who doesn't have the same issues. Since I am now having at least 3-4 days of nausea and vomiting a week its quite obvious I am still dealing with the post concussion on top of my Gastroparesis. We also added a new word to the equation called: MS. I have been through various testing for MS through out the past year by my specialists. MS doesn't have a specific test but a range of tests that are done over a period of months to a year based on symptoms. I have been watched by my specialists for over a year now and I have displayed every symptom minus one. Vagus nerve lesions can also be a sign of MS. I guess we all learn something new everyday. All these head issues finally all make sense as well my immune system doing some quite odd things over the past three years. I started having seizure problems almost four years ago and I always thought there was a possibility over the years I might end up with Parkinson's as a complication due to my Idiopathic Gastroparesis. Strange enough I really didn't think of MS as a complication from my Gastroparesis but I wasn't that educated as well on it. Like I said, we all learn something new every day. For now my doctors goal is to get the head issues and flair ups under control. This means taking lots of medication that this gal isn't used to. I went from two to eight. I have a list now to follow while doing my best keeping up with everything. They still need to run blood work time to time seeing where my immune system is and how close I am of putting the flair ups to sleep.
After a very informative appointment I was once again reminded by my doctor that he can't fix me. He can't cure me. No one can. What they can do is their best to help ease symptoms this way the flair-ups can subside hopefully a bit quicker! I told him as long as he can put a temporary bandaid on and allow me a few days of freedom a week I am happy! The post concussion syndrome from the concussion will have to ride itself out. I know my limits as well when its safe to or not to drive. If I run into problems I must pick up the phone and call someone to come get me and my car. So its another part of life I need to work on by altering things a bit but its not like I haven't done it before. Its all in your attitude. Attitude can make or break you.
d'oh
I woke up around 10am after going to bed around 4am. I had the worst headache with nausea as soon as I laid down on my couchbed. Once 10am hit the darn sun started coming through the towels hanging over the curtains which fired my head pressure right back up again. By 10:30am I started having tremors in my legs then a seizure came on. Seizures are scary no matter when they strike or how bad the intensity. I do my best not to panic which can only prolong the seizure and make it far worse. Forget trying to pick up a phone and call someone. Hahahaha! NICE TRY but NOT happening! During a seizure that is the last thing you are thinking about and your only concern is holding on for dear life and praying the son of a gun gets over with soon! I also worry if I will wake up and not know where the heck I am at. That has only happened once when my ex lived at the house. It was scary waking up not knowing where you are or who is sitting next to you. Never ask a person questions during a seizure because we can't talk. 
The worst part of today was having two seizures within an hour apart from each other. The second one is always the real kicker because it makes your entire body sore and its hard to move your arms and legs.Your face also goes numb. This time at least someone was over the house when it came on and noticed my body shaking under the couchbed covers. I am very fortunate I came out of that one with no ramifications. Afterwards I was exhausted but too scared to go back to sleep. Thank you Mr. Valium for doing the trick within 15 minutes. WHEW!
Did I just make a funny? "Head Start" on things? Hahahaha!