Friday, December 2, 2011
I’m always looking to save money, especially when I need to make an out of town trip. In a few weeks we will be doing an over night trip to Chicago. We all know how expensive the city can be, so I did a little digging and came up with some great deals. I ended up booking our hotel room at Sax Chicago through Travel Zoo for $109 and getting 50% off the $50 parking fee. If you have ever had to pay for over night parking in Chicago then you know what a bargain that is in itself. Today while going through my emails and rummaging around I found two restaurant deals. The first one is for a place called Cemitas Puebla, a Mexican restaurant that was featured on Diners, Drive-ins and Dives with host Guy Fieri. What is their claim to fame you ask? The Cemita Sandwich! Yeah, I had no idea what the heck it was either, but if you click the link above, you can see why it has sparked my interested. So anyway, back to my deal for Cemitas Puebla…we will being getting a meal for two that consists of 1 Chalupa, 2 Cemitas, and 2 12oz. soft drinks all for a whopping $9 ($20 value).
My other restaurant deal came to me courtesy of kbg deals, lunch for two at a new Jazz Café in the South Loop called Donna’s Café. If you are looking for something on the lighter side with some relaxing Jazz music, this seems to be the place. The menu consists of specialty and made to order salads and sandwiches. With a 4 star rating from 33 reviewers on Yelp, I’m crossing my fingers that it is just as good as it sounds, but for $9 ($20 value), you better believe we’re going to give it a try.
I purchased each one of my restaurant deals at a 55% discount leaving me more money to spend on other things or to but back in my pocket and save for a rainy day.
Other past deals that I have personally purchased was a $10 coupon (Groupon) worth$20 for Samuel Mancino's. We are big fans in our house of Mancino’s so I definitely couldn’t pass it up. In fact, I bought two of them. It’s especially nice to have bought the coupons so cheap and use them for those night’s when you don’t feel like cooking or have nothing in the house to eat.
Another great site is 1 Sale a Day. I have gotten earbuds for $2 with FREE shipping and my most recent purchase was an iPod/iPhone Cable for all of $1 each with FREE shipping. Considering my teenager can’t keep up with anything, these were a very practical item for me to grab. Everyday they have new deals in the categories of wireless, jewelry, family, and watches. Definitely a site worth bookmarking or having emails sent to you.
For the handyman/woman in your life, One Tool a Day is a good one. With just literally one tool a day on special and low shipping, keep your eyes out for that perfect Christmas gift.
Now some of the sites have more than just items and dining for you to purchase. Sites like Groupon, Living Social, kbg deals, and Travel Zoo all have destinations on them as well. I saw a deal today on kbg deals for a 3-night stay for two adults plus two children in Kissimmee at Country Inn & Suites Orlando Maingate Calypso for $169 at 61% off ($432 value). Combine 3 vouchers, stay up to 9 nights! Plus it includes a special late checkout time of 3 p.m., $20 Tiki Bar/resort credit, breakfast each day, and one picnic or grill kit with burgers and hot dogs, FREE access to mini-golf, FREE parking, plus a FREE shuttle to and from Disney and Universal.
I could go on and on and tell you about all sorts of deals, but it’s more fun to search the sites yourself!
Monday, November 28, 2011
It has been a long time since I’ve blogged anything, guess I’ve just been lazy or my life is just that boring. Regardless, I am taking the time to share just how wonderful my husband and mother-in-law (mom as I refer to her) truly are.
My husband and I put up our Christmas tree yesterday and I was fussing again about not having a tree skirt. Well, I used to have a Mickey Mouse one with my maiden name (Orman) on it that my mother gave to me and my kid’s year’s ago. Last Christmas, since both of the kid’s were staying with her she took it back. So back to putting up the tree… somewhere along the line, my husband secretly called his mom to tell her that they needed to work on getting me a tree skirt because he knew how upset I was over my old one. Just by luck, she was at The Christmas Tree Shoppe when he called, lol. A few hours later her and her husband showed up with a tree skirt for me. It wasn’t just ANY tree skirt, it had the final words from ‘Twas the Night Before Christmas on it… And to All a Goodnight. What makes it so special is that, every year she buy’s my husband and his brother a different ‘Twas the Night Before Christmas book, last year it was the one that she could record her voice. Which of course they give her a hard time and tell her that they don’t like, but in this family, TRADITON and FAMILY means EVERYTHING!
How did I get so lucky?
Monday, September 19, 2011
Sunday, August 28, 2011
My goal is to raise $1,000.00 before the Walk on September 18. Being diagnosed with MS has changed my life and my family's lives forever. There is NO cure for MS, that's why your donations are so important. The more money raised for the National MS Society, the more research they can continue to do to find a cure for this debilitating disease.
So please, even if you are not doing the Walk, please find it in your heart to donate to Team Laws. Every little bit helps, so even if you can only afford $5, $10 or $20, it helps! Passing this message along to others on your friends list would also be helpful. Please donate at: Team Laws
With this disease it is so easy to throw in the towel, and that is the worst thing we can do. - Teri Garr
Sunday, August 14, 2011
Well this is the first day since my surgery that I have felt decent enough to spend anytime on the computer. It has been quite the roller coaster of pain and emotions.
Thursday 8/4/2011- “The Big Day”, we had to be at the surgery center by 11:15am , with a surgery time of 12:15pm. They took me back to have me change into my beautiful gown and put on my even more attractive surgical cap. Then the nurse did my IV to get some fluids going. After she was all done with me she went out to tell Jeff, my sister Cari that they could come back and sit with me. To my surprise, Christine (Jeff’s cousins wife) who works at the Clinic came down to visit with us as well.
After all the different doctors came in to talk to us about the surgery, they finally shewed Jeff, Cari and Christine out and took me off to surgery. As I was laying there on the table, I was growing more and more anxious, I was so thankful when Dr. Feelgood, as I called him, came in to knock me out. (panic attack avoided)
After waking up, the nurse brought me two Percocet to take. I really wasn’t feeling to bad at this point. I was just very tired and so happy to see Jeff and Cari.
We didn’t hang out for much longer and headed home.
After arriving at home, I was starving! Believe it or not, I had very little pain and made scrambled eggs. Christine surprised me once again by showing up later that evening with popsicles. So lucky to be in the same family as her. I was still hungry around 10:00pm or so, decided it was PANCAKE TIME! It was delicious.
Friday-Monday- Still not feeling too bad, between liquid ibubrofen and liquid percocet, it was all very tolerable and I was thinking, “ Hey this isn’t too bad at all.” Aside of the severe hunger pains, Thursday through Monday was ok. I did however have to sleep in the recliner.
Tuesday- Oh Tuesday, what a nightmare you have brought me! So nauseous, and so much pain in my throat and ears. A day spent throwing up and on the verge of tears is NOT my idea of a good time. If someone would have offered to put me out of my misery, I probably would have taken them up on it. I think the only time I left the recliner was to go to the bathroom. At this point even water didn’t want to stay down.
Wednesday-Woke up feeling so much better, at least I was no longer nauseous. I can’t wait for the night when I can cuddle up with my husband in bed again and stay there for the whole night. Laying flat puts such pressure on my ears that I gave up sleeping in the bed days ago. Not that I really get to sleep anyway. I can’t go but 30-45 minutes at a time without hydrating, otherwise my throat and ears REALLY hurt. I can see areas in my throat that no longer have a scab on it and it is just raw and red, those are the areas that hurt the most right now. Forget anything cold at this point because it is like razor blades.
Thursday-Sunday-It’s been about the same, the pain comes in waves in my throat and ears. I have managed to eat a beef and cheddar from Arby’s Saturday, not and easy task to get it down but I needed some solid food. I guess the worst has been that my ears are killing me. Last night I couldn’t even recline to sleep because the further back I went the worse the pain and pressure in my ears got. I really just don’t have the patience for this recovery shit. I want to be able to eat my favorite foods and guzzle a beverage. Sips of anything is a chore to get down. I still can’t do cold at all because it’s like flames going down. Now I know what a fire eater must feel like.
I know I shouldn’t be complaining, it could all be so much worse, but damn it, I have seemed to miss out on so much this week. I know all of this will be worth it in a few weeks once I am fully recovered. The fact that I am able to sleep in the recliner, being flat on my back says a lot. Before, I would be waking myself up gasping for air from my throat blocking off my air supply. I am looking forward to that first pain free night of cuddling with my wonderful husband and sleeping like a baby, ALL night !
Friday, August 5, 2011
I received my Rebif today through Fed Ex and shortly after that I received a phone call from Rose, one of the Nurses from Rebif. We scheduled for her to come out for a home visit on Monday at 8:00pm. I know that seems late but they say it’s better to take your doses closer to bedtime because of the flu like symptoms that may occur.
I will be injecting, or should I say, Jeff will be injecting me, Monday’s, Wednesday’s and Friday’s. I just hope that it doesn’t burn like some of the other injections I have used in the past.
So it’s day two post tonsillectomy/uvulectomy and I’m feeling pretty good. My throat isn’t really sore at all, I’m rather annoyed by the swelling of the uvula area. If that’s as bad as it get’s then I can’t complain at all. I haven’t been sleeping well because of the swelling, but I have been able to eat scrambled eggs, pancakes and mac n cheese so at least I’m not starving. Drinking on the other hand has proved to be a bit challenging. It feels like it is trying to go up my nose, lol.
I’m sure the fact that I have been keeping up with my meds has made a tremendous difference. I can take my Ibuprofen and Roxicet (liquid Percocet) every four hours so I take the Roxicet and 2 hours after that I take the Ibubrofen. So every two hours I am taking meds, plus my amoxicillin every 12. I feel like that’s all I do is take meds.
I thought about posting a photo with this blog but I figured you all didn’t want to be grossed out by the disgusting gunk in the back of my throat. Apparently my tonsils were quite large according to what the doctor said and according to the gigantic holes in the back of my throat. All and all I am doing good so far, keep your fingers crossed for me .
Monday, August 1, 2011
Well I guess Thursday is the big day, I am getting my tonsils removed and my uvula shortened. I know, it sounds like way too much fun. I’m not looking forward to it at all. I am terrified of the pain afterwards, but I am hoping that in the long run it will fix my breathing and swallowing issues, especially when I’m sleeping. We went back and forth about whether or not I should have it done, mainly because of finances. Like I don’t already have enough medical bills. It was piling up before all of the testing for MS, why not add more to it? Oh health insurance, why do you suck so?
I get the feeling that there won’t be enough popsicles and sherbet to make me feel better. I hear that this is a very painful surgery for adults, so am I thrilled to have it done? Absolutely not! So don’t be surprised when you all have to listen to me bitch and moan for a few weeks. My poor husband, I guess this will prove just how much he loves me, lol.
Thursday, July 28, 2011
1/2 cup milk
1 cup parmesan cheese, grated
2 garlic cloves, minced
2 tablespoons parsley flakes
1 1/2 teaspoons oregano
1/4 teaspoon pepper
2 lbs ground beef
2 cups saltines, crushed ( about 60 crackers)
2 (15 ounce) cans tomato sauce
1/2 cup parmesan cheese, grated
1 1/2 teaspoons oregano
1 teaspoon basil
1 teaspoon parsley flakes
1/2 teaspoon salt
12 (6 inch) submarine buns, sliced
mozzarella cheese (optional)
1. In a large bowl, combine the first eight ingredients.
2. Crumble beef over mixture and sprinkle with cracker crumbs.
3. Mix gently.
4. Shape into 1 inch balls.
5. Place in ungreased 15x10 inch baking pan.
6. Bake at 350 degrees for 20-25 minutes or until meat is no longer pink.
7. Drain on paper towels.
8. For Sauce:.
9. In a large sauce pan, combine the tomato sauce, parmesan cheese, oregano, basil, parsley and salt.
10. Bring to a boil over medium heat.
11. Add meatballs.
12. Reduce heat, cover and simmer for 20 minutes or until heated through.
13. serve meatballs and sauce on buns. ( I put mine in the oven on broil before putting meatballs on it so bun wasn’t soggy. I also put it on broil to melt cheese)
Top with mozzarella cheese if desired
Thursday, July 14, 2011
Once again I am left apologizing for waking him up and feeling like an ass because I can’t control my body. All I managed to say was, “At least I didn’t pee the bed.”
Thursday, July 7, 2011
Well the latest Neuro visit went well I suppose. It is difficult to understand the doctors European accent most of the time, but he is very thorough and informative. My LP came back negative, meaning that no MS or other virus’ showed up in my spinal fluid. My EEG, VER and BAER were all negative as well. As far as my blood work goes, who the hell knows. The lab never sent the results over to his office, so now I have to wait for them to call the lab to get the results.
He discussed all of the different medications for MS with me and gave me information on Rebif and is going to have the nurse contact me so she can come to my home and show me how to use it properly. That is, as long as nothing else shows up in my blood work.
Sunday, July 3, 2011
I get to go on a date with my hubby next Friday night, I am so excited! It’s been months since we have been on a date. We will be eating supper at the Cove and then watching the game. Afterwards they are shooting off fireworks and then showing Star Wars on the video scoreboard. I know to most of you ladies that doesn’t sound like a very romantic date, but if there is one thing that I do know about my husband, his two loves are me and baseball. And I’m not so sure in that order either, lol. Whatever makes my husband happy, makes me happy. He has been working so much overtime and never complains. He deserves a night to relax and we deserve a night out of the house with no kids around. Besides, I think my recliner and his spot on the couch could use a breather and time to pop back into shape. Hey, and really it’s about me getting out of the kitchen.
Friday, July 1, 2011
Well I showed up for my appointment this morning at 9:00 and was prepared for the long hours ahead. The first test we did was the EEG. I sat in a nice comfortable recliner where the technician placed the electrodes on my head. Then I reclined and got all relaxed with the help of the sound of the ocean. She then had me open and close my eyes a few times, take deep breaths and then with my eyes closed turned on a strobe light. That was my least favorite part, even with my eyes closed it was sooooo blinding. The whole process took maybe about 30 minutes. After removing the electrodes, we moved to the room next door where another big comfortable recliner was waiting for me. Once again I sat down and relaxed while she put more electrodes on my head. Then she gave me head phones to put on, it began with little clicks on the left side, that lasted for a few minutes and then it switched to the right side. That was all for the Auditory test, next was the Visual test. I had to put a patch over my right eye and watch a little white square in the middle of a black and white checkered pattern that constantly moved, then switched to the left eye. That was the end of all the testing. She didn’t do the one that zaps you, as I call it. So after thinking that I was in for hours of fun, all in all I was only there for about an hour and a half.
Thursday, June 30, 2011
So tomorrow is hopefully the last of all my testing. I get to spend hours at the hospital with electrodes glued to my head, woo hoo! I guess the secret will be out that I’m crazy, lol. The fun begins at 9:00 am, and for approximately the next three hours I will have a VER, BAER, and SER done.
VER-Visual Evoked Response
VER's evaluate the visual nervous system for optic tumors, retinal disorders, and demyelinating diseases such as Multiple Sclerosis.
As with other testing, the technician will measure, mark, and prep the scalp for the electrodes. Six will be used for the VER, 5 on the scalp and one behind the left ear. Each eye will be tested individually. An eye patch will be placed over the non-test eye, you will be seated in front of a computer monitor and a checkerboard pattern will be visible, this is the stimulus. You will be asked to focus on a small red pulsating dot in the middle of the screen for a few minutes with each eye separately, while in the background the checkerboard squares will be moving.
The procedure takes approximately 15-30 minutes.
BAER- Brainstem Auditory Evoked Response
BAER's are used to evaluate the auditory nervous system (including the brainstem) for acoustic neuromas, brainstem tumors, hearing disorders, demyelinating diseases, etc.
As with all testing, the technician will measure, mark and prep the scalp for the electrodes. Four will be used for the AER, two on the scalp and one behind each ear. Headphones will be placed over the ears to deliver a series of clicks to each ear individually. This sound is the stimulus.
The procedure takes approximately 15-30 minutes.
SER- Somatosensory Evoked Response
SER's evaluate the nerve pathway from the peripheral nerve through the spine to the somatosensory region of the brain. (Somato = body, Sensory = reception and transmission of the sense impressions). SER's evaluate spinal cord injuries or disease, neuro-musclar disease, and demyelinating diseases.
As with other testing, the technician will measure, mark, and prep the scalp and prep various other points along the nerve pathway from the arm and leg to the brain. A small electrical current is applied to the skin overlying a nerve or nerves on the arm or leg. The electrical current is the stimulus.
The procedure takes approximately 1 hour (60 minutes)- 1 ½ hour (90 minutes).
After all that I get to spend another hour or so having an EEG done.
An EEG is a recording of electrical activity of the brain. It is a diagnostic tool used to evaluate seizure disorder, stroke, infections of the central nervous system (encephalitis etc), degenerative disorders (Alzheimer's, Parkinson's), head trauma (accidents), headaches, brain tumors, etc.
The technician will measure, mark, and prep your scalp and place a small metal disk (electrode) in each of the 27 areas. The disks “pick-up” the electrical activity of the brain. This activity is transmitted through the wires to the EEG computer where they are amplified sufficiently to be seen on the recording.
The procedure takes approximately 45 -60 minutes. Activations will be done to stimulate the brain: Eye opening and closing, flashing a strobe light at different speeds, and over-breathing for about 3 minutes.
I have a feeling that it will be a very long day. To top it all off, they want me to have no more than five hours of sleep for the EEG, but to be well rested for the other tests. Ok, so how do they expect me to do that? I say get normal sleep because come noon when the EEG starts, I will be ready for a nap.
I’m just so ready for some answers. I have done test after test without results from any of them, so thank goodness this is the end.
Tuesday, June 28, 2011
I finally heard from the Neurologists office today, I have an appointment July 6 to hear all the results from my blood work, LP, EEG, VER, and BER. Sounds like a fun filled day. I guess I need to decide for sure if I am going to start meds or just stick with doing things the natural way. With the way my legs feel today I would do anything to make it all better. I guess this is just a preview of what is to come. *Oh Joy* I went to the bank and post office today and it was rather difficult to get to and from the car. I hope there aren’t many more days like this just yet. I suppose it’s a good thing that I made plenty of Baked Spaghetti last night, because I think that will be tonight’s supper as well.
When do I know it’s time to buy a cane? What kind of cane do I get? I don’t want to push it to soon and get one before its necessary, but on days like today when I feel a bit unsteady and weak, should I have one on hand?
Monday, June 27, 2011
I would love to be able to get back into working out a little bit. I could really stand to lose some weight, besides that, it is very important to stay active. It's been about 10 years ago since I've worked out and I loved doing it back then. I know I wouldn't be able to do even 1/3 of what I could do back then, but to just get on the bike and do some light weights would feel good. Right now my body is so sore and getting up out of a chair is painful. Maybe after starting these herbs I will be able to move about a bit more easily.
Wednesday, June 22, 2011
Tuesday, June 21, 2011
12 lasagna noodles, cooked, drained
2 cups ricotta cheese (or cottage cheese) I prefer Ricotta
1 1/2 cups mozzarella or 6 Italian Cheese, shredded
1/2 cup parmesan cheese
2 tablespoons parsley, chopped
1 (32 ounce) jars spaghetti sauce (I have become a big fan of Classico Spinach Florentine Sauce)
1 -2 cup mozzarella cheese, shredded, for topping
1. Mix ricotta cheese, 1-1/2 cup mozzarella and parmesan cheese with eggs and parsley.
2. Place one lasagna noodle on work surface.
3. Spread 1/3 cup cheese mixture on noodle evenly.
4. Roll up tightly like a pinwheel.
5. Place seam side down in microwave-safe baking pan, that has 2 cup of spaghetti sauce in bottom.
6. Cover rolls with remaining sauce and sprinkle with additional mozzarella cheese.
7.Cover with microwave-safe wrap and microcook on high 10-20 minutes, until cheese is melted.
I feel like I had a fairly productive day yesterday. I filed a complaint with the North Carolina Medical Board against Dr. Jeffery and I contacted an attorney. Crossing my fingers that when the attorney reads my information, he will decide that I have a malpractice suit. Whether it is the doctor that is directly responsible or another staff member that was supposed to call me. SOMEONE needs to be held accountable for not informing me that I have MS. I also called Wellmont Bristol Regional Medical Center to get a copy of the second MRI that supposedly caused him to diagnose the MS. Now I have to wait until they send me the release form to sign, then send it back to them, so they will in return send me the MRI Disc. I still can’t believe how irresponsible this doctor was. When I filed my complaint, I looked to see if he had any other complaints filed against him and he hasn’t. I guess I was just the lucky one that he screwed over.
It really makes me wonder how much better I could have been feeling for all these years if I would have been doing therapy. Maybe I wouldn’t have been having so much back pain, and had all the tingly in my legs and muscle weakness. The best thing would be, maybe I wouldn’t feel so stupid by forgetting words or getting so tongue tied when I speak. I just can’t believe this shit! I guess I can sit here and think about all the “what if’s” instead of the “here and now” and get nowhere, or I can focus on getting treatment now and taking care of myself. I have the rest of my life to battle against this disease, so taking it one day at a time is all I can do I suppose.
Sunday, June 19, 2011
I had requested my medical records from North Carolina Baptist Center /Wake Forest University from Dr. Douglas R. Jeffery, M.D., Ph.D, Associate Professor at the Multiple Sclerosis Clinic. I tell you so much information so you can see what a “Professional” this Neurologist is.
On February 14, 2007 I had an appointment with Dr. Jeffery, I was referred to him by my primary doctor at the time, Dr. William Mark Handy. Who happens to still be the best doctor I have ever been to. Anyway, I was referred to Dr. Jeffery for the purpose that Dr. Handy suspected that I had MS and Dr. Jeffery was an MS Specialist. My first visit wasn’t that best, he had no bedside manner at all and he did mention that MAYBE there was one spot on my MRI that could possibly be a lesion but it was barely there, so it was hard to tell. He wanted me to have a cervical MRI and come back in six weeks for the results.
So I had the MRI and went back on April 5. Forgetful me didn’t take a copy of the MRI with me and he wasn’t happy. He flat out told me to go home and lose weight and I would be fine. So once again I left his office without any type of answers whatsoever and never heard from his office after that.
As time went on and my pain got worse, Dr. Handy referred me to a Rheumatologist to see if they could help me. On my first visit, Dr. Christopher Morris diagnosed me with Ankylosing Spondylitis (AS). Throughout the past few years I have tried every TNF inhibitor to treat the AS, without any luck. Which brings us up to date.
I was having this weird eye/head thing going on so I went to my primary doctor, Dr. Kevin Kaufhold. He sent me to have and MRI to rule out tumors or any other bad things that might be floating around in my brain. LOL Well as we know, the results are in and it is MS. Lovely, just lovely!!!
So now I am starting over with a new Neurologist, Dr. Galea and hopefully he knows what he’s doing. Since I am going to a Neuro I thought I would contact Baptist Hospital and get a copy of my record from Dr. Jeffery. So today I got the mail and my records were in it. Much to my surprise this is what I read…
“At this point, I believe we have confirmed a diagnosis of multiple sclerosis. She has additional imaging evidence compatible with that diagnosis by MRI scan. At this point, we will plan to go ahead and start her on Rebif therapy. I will see her back in six weeks. I have talked to her about all the side effects of this therapy. She will return to clinic in six weeks and will check her baseline CBC and liver function test. I wish to monitor interferon and interferon-induced hematologic and hepatic toxicity.”And that takes us back to the beginning of the blog…You have GOT to be kidding me!!! Never did he tell me during that visit that I had MS nor did we ever discuss treatment. I am pretty positive that I would remember having such a conversation! I am beyond pissed that I was in no way informed of such a diagnosis. Don’t we all think that if I was told that I had MS that I would have been treating it. I don’t know if he got a copy of the MRI later and made the diagnosis and someone forgot to call me, but I NEVER received another phone call from his office again.
Bad enough that I was never told about the diagnosis, but now I have been taking TNF inhibitors that has a side effect of demyelinating disease. So for the last four years I could have been treated for MS, but instead I was taking drugs that can cause it as well. Isn’t that just a HUGE kick in the ass?
Saturday, June 18, 2011
"As people with MS, we have plaques on our nerves where demyelination has taken place. This slows the ability of the nerves to function, and heat further slows down nerve impulse transmission in demylinated regions. Even a very slight increase of as little as one-quarter to one-half a degree in the body’s core temperature is enough to cause symptoms of heat intolerance."
Friday, June 17, 2011
Good news is that it did it's job and got rid of my spinal headache, bad news is that the pain in my back and hips is horrible, Oy vey! Annnnnnd, to add to the crap of a week, my insurance FINALLY approved my tonsillectomy and uvelectomy so I can have my gianormous tonsils out to help with my sleep apnea. After months and months, they decide it's ok. Well the timing couldn't be worse, soccer conditioning has started which means Skyler will need rides to and from at the crack of dawn, if I wait until July Samantha will be in Summer School at Disney. God forbid insurance approve it when it was convenient for me.
All in all, let's just chalk this week up to being not the best I've had all year.
Wednesday, June 15, 2011
We got there at 7:00am to check in and right from the start I LOVED my nurse. His named was David, he just made me feel so calm & comfortable by cutting up and just being himself. Jeff said he was relieved that I liked him from the beginning because he knows how I can be if I don't like someone. LOL Everyone that came in the room was so nice and told me that the procedure was no big deal, and they were right. I was taken into the "freezer" where I rolled onto a very hard table on my stomach with a pillow under me. They sterilized my back and shot up my IV with some good drugs to relax me. Then the doctor numbed the area and stuck the needle in, they tilted the table so that the spinal fluid would drip out and VOILA! I think it took all of 20-30 minutes. Shew, it was nothing like I thought it was going to be. It really wasn't any big deal at all. After they were done I had to spent three hours at the hospital laying on my back or side. I slept most of it while my wonderful, patient husband sat there by my side. Without him by my side I wouldn't be able to get through any of this.
As soon as I sat up I got a bit of a spinal headache so I reclined in the car on the way home. Once we got home, I didn't last long in the recliner before heading to bed. I ended up sleeping for about 3 hours this afternoon. After having a nice rest I am feeling better, I still have a slight headache but nothing too bad. Hoping that tomorrow I will feel normal and that in a few days I will hear the results of my LP and blood work.
Monday, June 13, 2011
Saturday, June 11, 2011
Friday, June 10, 2011
Lucky me, I had my first Neuro appointment yesterday. It involved lots of neurological tests like touching by nose and standing with my feet together with my eyes open and then closing them. Apparently it’s a bit of a problem if you fall to the side when you close your eyes. lol Who knew I had that problem? Not me! He checked all my reflexes and reflexes that I never knew existed. I was scratched on with a pin and had a light shined in my eyes, and they drew at least 7 vials of blood. He asked me a thousand questions and asked Cari (my sister) another thousand about me. So by the end he concluded that I had MS and other diseases merging with it. The only problem is that he is unsure of what the other diseases would be.
So now I am in for lots of testing and waiting. I’m not looking forward to having the Lumbar Puncture (LP) done. Being poked in the spine and having to lay in bed on my back all day is by no means my idea of fun. Then I have a fun filled day of testing that include an EEG (electroencephalogram), VER and ABER (http://www.webmd.com/multiple-sclerosis/evoked-potential-test-for-multiple-sclerosis). Hopefully after all of the testing and thousands of questions I will finally get some answers.
Wednesday, June 8, 2011
Tomorrow I have my first Neuro, appointment, I'm not sure how I feel about it. I'm nervous at what he will tell me and whether or not I will I like him. Sister number 3 is going with me, I am very glad to have her there with me. I'm sure she will think of lots of questions that I won't even think about asking. I do have a list of a few questions, plus a list of symptoms and all my meds. Although, since I am no longer taking meds to treat AS, my list has shortened. I'm sure the Neuro will fix that for me though. I wonder how much shit insurance is going to give me about paying any of this. I'm sure that he will want to do further testing, possibly like a Spinal Tap, Evoked Potential Test or Spinal MRI. I will gladly take the latter of the three if given the choice. I guess I will find out tomorrow!
Monday, June 6, 2011
Thursday, June 2, 2011
Muscle weakness in arms and legs
Tingling and creepy crawling sensation in legs and feet
Pain in hips with limited movement
Pain in spine and lower back with limited movement
Finger joints hurt
Oh who am I kidding, all joints hurt
Tingling in face and tongue
Funky feeling in eyes and head
Shortness of breath
Tender abdomen to touch
Episodes of head shaking, paralysis, crying, speech jumbled
Problem finding words
Blurry spot in eyes
Periphial vision loss at times
Night vision is poor
Problems hearing if there is any background noise
Constipation followed by constant bowel movements
Balance is off
Trip over own feet because my leg just won't move
Sore scalp to touch
Occasional leg spams
That is all that is coming to mind as of right now, like I need any more issues!
Then we have my husband's ex who get's the kid's every other weekend, pays no support and won't keep a job, while my husband goes in early and works weekends to make ends meet and is supporting my daughter as well since her father hasn't paid support since 2004. "Useless" as I refer to her, always has money to buy out the damn concession stand at the ball park, or to go to every festival and fair in the summer. She isn't concerned with the children's personal hygiene or eating habits. She is lazy, the kid's will even tell you that. Her new husband texts my husband for advice on how to make the kid's listen and complains about "Useless" saying that married life sucks and that she is an unfit mother. Need I say more?
Then we have my wonderful husband, who works his ass off and arranges his work hours to be at every ball game and gives everything he has to his family.
Monday, May 30, 2011
The day before that I had a brain MRI with and without contrast, so when my phone rang at 8:00 in the morning from The South Bend Clinic, I knew something was wrong. As my Rheumatologist told me the news I had to fight back the tears, and as I hung up the phone they poured from my eyes as fear ran through me. My husband was at work and I didn't want to tell him while he was there. Sobbing as if someone had died, I called my mother who I haven't spoke to in months. The first words out of my mouth were, " I know I'm not your favorite person lately but..." unable to control my sobs I finally manged to tell her what was wrong. I felt so terrified and helpless, my thoughts went to a friend and clients of my mother's that has MS and is paralyzed. I guess my fear is just of the unknown. I have already been unable to do things that I used to, how much worse will I become?
I have decided that MS stands for Mystery Solved...there have been so many weird things going on with my body over the past few years, so every time I think about some of those odd things, I say, "Well Mystery Solved, now I know why this or that was going on." Although I would rather be saying Mystery Solved because a cure has been found.
Every time I stutter or struggle to find a word or can't remember things, it's a reminder. Every time I stumble over my own feet because my legs just don't want to move, it's a reminder of what is to come. I have already have thoughts of looking for a wheelchair. I enjoy going to festival's and things like that but as of late my legs and back can't take walking for too long. They seem to be get weaker and weaker, which really sucks because a flight of stairs now kicks my ass.
I am in no way ready to get worse. So I am going to fight it all of the way, I just wish there was a cure for this damn disease.
Tuesday, March 22, 2011
As terrible as it sounds, I am not surprised by this. Our family is full of back issues. So now Cari is waiting to hear from Riley Children's Hospital to set up an appointment with a Pediatric Orthopedic. Let's hope that the worst thing that they have to do is make her wear a brace to straightener her out. I will pray that no surgery is involved, their family has been through enough the way it is. Cari is trying to recover from back surgery herself and her husband Steve tore his pec muscle and rotator cuff, this is just not what they needed to have to deal with.
Yesterday was my birthday, just another day to me but to my wonderful husband he thought I deserved a bit of special treatment. I don't know how I ever got so lucky to have such a loving man. I wouldn't trade him for anything, I can't imagine ever being without him. He took me to eat at Olive Garden and some how secretly informed the hostess that it was my birthday so after our meal the waitress brought me a cake, thank goodness no one sang. We both had a very small piece of cake and then went to Ritter's Frozen Custard, I was about to explode the way it was but I manage to eat an extremely delicious Turtle Sundae. Even without the wonderful supper and delicious frozen custard my birthday would have been perfect just because I was able to share it with the greatest husband.
So happy I have my wonderful husband, and sisters in Indiana to give a shit about me since my own mother, son and sister in Virginia didn't even bother to take the time to wish me happy birthday. I'll take that as I am no longer in the "Will". lol
Sunday, March 6, 2011
I came into this world with a mother, father, and three sister's, and up to this point I only have two sisters left...not by my choice but by the choice of the other three that have chose to be self righteous and unforgiving. Yet by the same token, all can be forgiven by these same self righteous fools if I was the alcoholic, abusive father or brother or the daughter that never questioned what was said.
Finding a wonderful man and all the happiness that I have missed my whole life has been like a cancer to those that have bashed me and thought very little of me. It has eaten away at them to the point that they still belittle me, even though they no longer communicate with me. To them I am not worthy of love and happiness. Maybe they are jealous of my relationship since one of them keeps their husband around to supposedly pacify her grandson/son and the other just doesn't want to be alone, so having ANY one around is better than NO one and sticking their nose where it sure as hell doesn't belong because their life isn't exciting enough.
There are no perfect mothers out there and to the one who thinks she is, has no right to horn in and take away any child and brain wash them. Being a good mom doesn't mean giving a child every material object they desire or letting them have their way always. It's teaching them how to be self sufficient, what is right and wrong and letting them know they are loved.