Tuesday, April 25, 2006

I wish I knew what in the hell was going on......

I know it has been a little while since I last posted and I want nothing more then to get back to my "old" posting ways..but this damned MS doesn't want that happen!!! Apparently neither does my computer as of late. K where did I leave off last time...Oh yeah how could I forget the horrible pain from the worst needle poke to date and spring freakin break!!!
K I will tell continue to tell a little more about the spring break situation. Thursday was a fine day with the kids they just learned to re-adapt I believe to each other of else God came down and gave me a lil extra help I like to believe both of these scenarios. Also Friday was ok plus it helped that Quorry was here to help me a lil bit too. Saturday we being the kids and I cleaned the yard (back yard where all the toys go in summer time along with trampoline and pool) of Buddy's gifts that he left EVERYWHERE!!!! Let me tell you I used more spoons in the first hour than 5 soup restaurants carry. My legs weren't hurting more than they always do but let me tell you I could feel the weakness creeping and it wasn't slow either. My problem is that when I start a project I do NOT stop until said project is completed no matter the circumstances no spoons or not!!! So now I'm still paying the price..Why do I have to be so damned stubborn?? Can anyone tell me the answer to this question??Monday everything was back to norm on the homefront..kids back in school and peace was restored...Thank GOD!!!!

K now to the horrible pain of that damned poke from last week. First Sheila had to take the tubes of blood to check for the norm things before the Novantrone. That was on Wednesday..Then Thursday I get a call that 2 of the tubes of blood had clotted and were no good and could not be tested and could Anoinette (another one of my home health care nurses) come Friday to get the blood. I told her sure but no way in hell was anyone EVER touching me in my medi-port as the pain was enough to give me nightmares literally!!! She said well I was hoping that you would not mind me taking the blood the ole' fashioned way..I responded with you can blow 25 veins but you are not touching my medi-port!!! So she came Friday and had absolutely NO problems accessing my vein. That I was sooo incredibly grateful for too. So with the blood work being so late to reach my dr's office I knew the that original projected plan was not going to happened as yesterday was the day that I was to get the chemo. Anyway today was the day and I honestly was a closer to getting over the fear of being poked in my medi-port because 1st of all 3 bags of fluid have to be ran to get Novantrone and I was more afraid I think that my veins would collapse badly to all of that hoopla. So hen yesterday Linda (yep another one of my nurses) called and said that she would be here today at 9 a lot of my fears came rushing back. I have only ever had Sheila to be the one to access my medi-port so yeah I was SCARED!!!!I told Quorry that no one was gonna touch me there but Sheila and if she was not going to be the one visiting then something else had to be figured out for the way the chemo was going to be given. Yes I know stubborn and a whole lot of being childish played a big role but you know what it is MS body and damn it I just want to be in some control over MY own body and honestly that is really the only control I can have over MY own body!!! So this morning I woke up trying so hard to have positive attitude over the whole situation as hard as that it is and was and put some of my lidocaine cream over the access spot for my medi-port and figured I would let Linda who by the way had been my nurse for over 4 years and I truly trust her having my life in her hands if you will. Well I'm glad that I got over all the shit about being a "baby" and just let her "poke" me and honestly all I felt was the pressure NO PAIN!!! I again had tears I think maybe because it was a huge stress release and stress and MS well you know are not a good combination. Everything went perfectly fine and I got my chemo. Only bad thing is now I feel like shit feel like I'm going to puke up the hardly nothing that I ate (bagel for breakfast)today and know that I will be awake all night feeling like shit thanks to the damn steroids that are required with Chemotherapy. Fun but just another day in my MS life I suppose......

Wednesday, April 19, 2006

Never has it hurt so bad that I have cried except for when I broke my ankle..........

I'm talking about the poke that I received today in my medi-port. I had to have the blood drawn for my Novantrone. Also received my steroids today which is why I actually have the energy to sit here and type tonight. Anyway it felt as thought she stabbed me not with a needle but maybe with a huge butcher knife. I actually had tears poring down my cheeks...now mind you I gave natural birth to 4 children with NO pain medication and the only tears I had for that was when I got to hold each of my 4 precious babies for the first time. Like in my title the only time I feel that I have felt pain that agonizing is when I broke every bone in my ankle. I am just praying my hardest that come Monday when I am poked again it won't be as painful. I will be poked again on Monday as that is the day that I get the chemotherapy along with more steroids and the most anticipated Zofran (which is appreciated because it washes the nasty taste of the steroids out of my mouth as it is mixed with "sugar water" vs. the "salt water" that the steroids are mixed with).

I don't think that this week would have been sooo tiring if it wasn't spring break for my kids. Monday I don't think will come fast enough. Can't wait for the boys to be back in school. All I have heard all week is tattle telling and fighting it is driving me absolutely insane. I think I want to go back on anti-depressants based on the week that I have had!!! Maybe even refill my prozac that I quit taking a year ago. It has been that bad. I 'm pretty sure the fact that I have so much other stuff on my mind I guess I just can't handle all this in one week by myself. That pretty much is what I am too. My husband works so much that I truly do feel that I am a single mom and damn it that is just too much for me right now. I'm at such a loss on what to do with my life at this point in time. I know I definitely need to get out with out my kids for more than an hour. Problem there is where do I go?? The other problem is how in the hell do I get there?? Next problem is what do I do with my kids? I know I have some friends (I believe that they are friends) 3 of them live fairly close even but there is the how do I get there...and what do I do just call them up and say well I really need to get out before I hurt someone either being my kids or myself so do you mind if my crazy psychotic ass comes over to your house with you and your kids?? I'm just having one of those weeks I guess. I'm tiredly exhausted but we all know that when I receive these damn steroids I don't sleep usually for at least 2 nights and tonight probably a most definite as Sheila ( my home nurse) let the iv run WAY too fast and I am wired. it was in and ran in 20 minutes when it is supposed to take at least 45minutes to an hour. She was very apologetic but as I explained to her that is how it used to be ran my Dr. just changed it to this new longer run time.

Wednesday, April 12, 2006

MRI was worse then the doctor led me to believe on the phone last week.....

Went to MS Specialist today. She told me that the added drug that would best benefit me would be the Novantrone. I was a lil skeptical as I only have a few lifetime doses of this chemotherapy left before I max out on the dosage. I then questioned as to why this was my best option especially considering aside from this recent little bout of Optic Neuritis I feel pretty good. At least good enough to not feel that I need this drug. She said that my best bet for future health and to be able to stay feeling this "good" would be to do this. I then again questioned this as previously stated I only have a few LIFETIME doses left (don't forget also that I've already minor little bit cardiac toxicity from this chemo). She then said well there are 2 other chemotherapy choices to choose from. I didn't want to try something new that to me I have no clue as to how I will feel as with the Novantrone I absolutely LOVE it makes me feel like a whole new person. So I'm a lil scared to say the least. I will also for the first time be getting it the "proper" way. Where before I would get 1/3 dose every 4 weeks this time I will be getting the full dose every 12 weeks. I am going to start next week and then see the doctor again in 3 months so not sure if there will be a second full dose.So that is all that I have to report for now. I'm extremely exhausted as I have been non-stop since Saturday and am ready to collapse...........

Tuesday, April 11, 2006

Good news?? Not sure but now know that I'm not crazy I have these headaches for a reason.....

So yesterday was my appointment with the Neuro-opthamologist. She did a million eye tests too. Some of which hurt my eyes because of the bright lights. The eye drops that she used I sware were either bleach or alcohol. Anyway the conclusion and answer to my blurred double vision is none other than the wonderful Optic Neuritis. Joy. I have had Optic Neuritis before but it was very painful behind my eyes, where as this time I only have pain if you will in my eyes with brighter lights such as the sun or sometimes the television. She told me that was probably and most likely the cause of my headaches. So I guess I'm glad that I'm not crazy that these headaches are for real. I was really beginning to believe that I was imagining them.

Tomorrow is my appt. with my MS Specialist. I'm a little nervous but don't even have the time to stress about it as I have had a VERY busy last couple of days. Saturday was Bradley's birthday party at McDonald's and all 4 of Quorry's brothers came here afterwards. Sunday had to clean up a HUGE mess that 4 boys made mind u all of this brothers with the exception of 1 are over the age of 18. Also went Easter shopping for my kids. Yesterday had my appt. with eye dr. Today took Kaylee to get her hair cut then to dr's as she still seemed to me to have pink eye that would come and go. Found out that it is allergies not sure if that is good or not. Pink eye would have probably been a better diagnoses don't ya think..3 years old with allergies makes me sad. Then had the MS Family Fun night Fundraiser at Friendly's. We made 87 bucks. 87 more dollars then we had yesterday. Next week we are doing it at McDonald's where all proceeds made during the designated time 25% of which go to us. Then doing Pizza Hut the following week. bradley's pre-school teacher came there tonight and did face painting. She is known as Razzle the clown on occasion. She is a wonderful person and she painted Kaylee's face as a lil puppy, Bradley was the /Easter Bunny and Andrew had red MS's all over his face with a tiny lil dog.

I will update more tomorrow after dr's appt. Thanks everyone for bring there for me!!!

Thursday, April 06, 2006

Stubbornness?? Stupidity??Scared..YES...WHY did I do this to myself can someone please tell me or slap me??????

My gosh do I ever sound like a wine ass these last few posts??? Let me explain the title to this post. Got a call today from Marge, the Nurse Practioner at my MS specialists office making sure that I was still gonna be there for my appointment Monday. I said No because my appt. was cancelled and re-scheduled for Wednesday. So she said okay well I'm looking at your MRI from last Friday and frankly I'm a little worried at how much more progressive your case has become. We need to talk about a new game plan..new meds. to add to the Avonex and the monthly Steroids. I'm thinking " Amanda why in the hell did you have to be so damn stubborn about these freakin injections???" " Amanda maybe , no not maybe if only you would have just taken them you would not have heard them words." "Amanda why??You did this to yourself..Now maybe you will learn your lesson??" It's terrifying..there are no other drugs out there that I have not taken that my dr's office offers ok there is Novantrone..but I want to save that as I only have a few more lifetime doses left of that medicine and it is my savior...Do I really want to use it now?? I'm only 26 Fucking years old!!!! this is soooo not fair!!!! I do apologize for my whining. I 'm just so angry with myself. I have been crying all day until Bradley got home from school as I could not let him see me crying. I could not ruin his birthday. So I gathered my composure and went out to dinner and came home put the kids to bed and continued on with my crying..and that is what I am gonna do cry and attempt to go to sleep

Wednesday, April 05, 2006

I think that I have found the "cure" for my headache.....sleep..sleep..and yep u got it more SLEEP!!!!

Today after getting up with Bradley at 7:30 and getting him ready for school (ok well he is almost 6 tomorrow as a matter of fact he did dress himself) Kaylee informs me that she wants a drink and is going back to bed. Terrific!!! I can crawl back into my nice reserved spot in my bed that may still be warm next to my husband who I feel as though with this new job I NEVER see. So that is exactly what I did until around noon when Kaylee came to my room and announced "Mommy I'm all done sleeping". Can't complain about that now can I?? I'm not going to say that the extra sleep(bliss) got completely rid of my headache but it sure seemed to make it less noticeable if you will. Then Kaylee and I proceeded with making Ice Cream Cone cupcakes for Bradley's snack for school tomorrow. I used to make these damned things every year for Andrew's birthday at school and am soooo glad that he is happy with me just buying something. Not that I mind baking things for my kids or anything but these damn ice cream cone cupcakes can be a real pain in the ass let me tell you. I bought some Spiderman Cupcake Rings decorations and put them on the cupcakes so I'm sure Brad will be the cool kid tomorrow.

I just bought my washer a lil more than a year ago and today it seems as though it just wants to quit on me. It won't spin at all as it seizes up on the spin cycle. Note to self from now on buy the extended warranty!!! Thank God my Dad is a jack of all trades. He is coming tomorrow to check it out and god willing fixing it for me. I would die without my washer. You gotta figure 5 people living in a house with an OCD mother of laundry that just doesn't go hand and hand. Let me tell ya!!!

I'm so disappointed in myself for this year's MS Walk. So far my grand total that I have collected is a whopping $15 measly bucks!!! I'm soooo disappointed to say the least. I thought for sure that the man who helped make me would donate..but nope of course not even a dollar. I am kind of limited I guess on my options as I guess everyone considers me homebound. It is not like I go out everyday nor do I have the opportunity of having a job to try to collect pledges. I guess I am just feeling a little inadequate today about this whole ordeal. I had asked the NMSS for fundraising ideas and tools and received a paper in the mail with all sorts of great ideas for people who have a freaking workplace. A lot of good that did ME!!!!My MIL and FIL always say that they are gonna sponsor me but never do. My mom and dad obviously won't as they do enough by getting their own sponsors and walking with me. My friend Shannon is walking with me this year (She has MS)and approx. $200. Go Shannon!!!

Monday, April 03, 2006

Feels like forever......life has been to darn hectic as of late...

Where do I start. K made it through my 5 year day the best that I could I suppose. I think the worst almost of last week was Sunday night I got a headache. Wasn't too bad, but everyday after that is just seemed to get worse. Took some of the migraine medicine and of course it didn't help AT ALL!!! I was thinking that maybe it was my body's way of saying so now you finally after almost 6 months being a stubborn bitch and (stupid) foolish and now you wanna take an interferon with NO repercussions?? I don't freakin think so. That is the only thing that I can think of that brought on such a bad headache which BTW I still have. Oh year left out a kinda pertinent detail..last Saturday night I decided maybe I will finally start back on the Avonex. Don't know why I was soooo terrified. I think a lot of it was all the bad incidents that I had with Reshit oooppps I meant Rebif. That is the only reason I can think of for the fear of doing the Avonex again. Although I know that it doesn't hurt (which it did like a son of a bitch I tensed up waaayyy too much and man did it feel like I pulled a muscle in my thigh) Wednesday I went for my yearly womanly exam which was a little scary as they find some kind of mass on each of my ovaries. So now I have to go get an ultrasound and pray like hell that it isn't cancer or anything to terrible. I guess I don't want to lose my ovaries. Not that I am having anymore kids cuz don't you think that 4 is enough?? I certainly do. I guess my fear is that I am way too young to be going through menopause and the HRT will only add to the weakening of my bones from the constant steroids. I'm trying my damnedest to not fret over it too much because I'm still in a relapse and stress is not gonna help that at all.

Thursday Andrew got the finalization for his braces done. Man did I feel for him. He could not even chew because his mouth hurt so bad. So he lived on pudding, green apple applesauce, and chicken noodle soup all weekend. He was loving that part of it let me tell ya. He looks so cute with them too. Like they were just meant to be there I guess.

Saturday coming up is Brad's birthday party at McDonald's. I really feel for him because I let him invite 4 kids from his class and only 1 of them are coming to the best of my knowledge as today was the RSVP date and I got 1 call and that was today. I do know though that some don't RSVP so hopefully at least one more of them will be joining us. It's not like it will be just Brad and Shannon(the one who RSVP'd)2 of my other kids will be there and so will my niece and nephew. I guess I was just kind of hoping that some of the kids from his class would be there is all. I guess I can look at like this it will be cheaper less kids I have to buy food for right??
If you are viewing my page PLEASE take the time to donate to People with MS at www.nmss.org Thanx!!!
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