My Blog

Drink, Pee, Repeat...

06/16/2011 10:37:00

Over the past few weeks, I have been noticing that I have had to replace TP left and right. I was blaming it on changing brands and that we needed to go with a different one, but I finally realized that it wasn't the TP. It was my bladder.

I find myself having to urinate over 30 times a day. I remember on my wedding day, I only peed twice that morning before even getting in the limo to head to the wedding ceremony and I was able to hold my bladder all day until after the reception. This was only 6 months ago...

I spoke to my neurologist about my issue and he referred me to a urologist. I am only twenty-six years young and I definitely don't plan on having to wear diapers any time soon! Next thing ya know, I'll be using denture cream that Princess Cruises puts on your pillow in the morning... Not really, but after my husband and I went on our Honeymoon with them, we felt like the youngest people aboard the ship! Princess Cruises says No! to chocolate bars and Yes! to Poligrip! ;)

Anyway, I am anxious to see if medication will actually help my bladder issue. When I told my mother about it, first thing she asked was "Do you wet your pants?" Um, no! And, I sure as hell won't let the problem get to that point...

Upper Cervical Chiropractic Care & MS

06/12/2011 12:29:00

I did some research on multiple sclerosis and how a car accident can affect the brain in terms of lesions, and I came across upper cervical chiropractic care. The reason I started looking into it is because I was in a three car accident where I was rear-ended and pushed under neath the back of a 4x4. I never had any sign or symptom of having the disease until a few months after the accident. I was diagnosed with MS two years before the accident happened. When I searched for answers, I came across Montel Williams and articles about trauma. Montel Williams is a huge believer in the treatment of upper cervical care with MS, and of course he has the money to pay for it, but after over a month of receiving the treatment and over 4 hours of driving back/forth to a certified UCC specialist, I found out the truth.

The research looks good and many patients see positive results, but as ms patients, we need to be cautious. People always say that ever risk has a reward, but in this case, I feel that every reward has its risk.

I was going to a upper cervical chiropractor that had a really upbeat and positive attitude about wanting to help me... at the beginning. The doctor educated me on how many patients he/she treated and how they were helped. I was a believer at first, but after talking to someone I know personally who is the mother of a chiropractor, they didn't see how driving that distance after having adjustments made was gong to help me. I started getting horrible migraine headaches that would never go away, and if they did, they'd come right back.

I stopped going. I couldn't deal with the headaches and I was afraid that my prior problems related to MS would come back again. I understand what upper cervical care can do, but I also understand what it can cause. I decided that there was too much risk and I was afraid of what I would encounter before I found my reward.

I was also informed by the doctor that I would have to continue driving a few hours multiple time a week, for multiple months, for a year to notice the full effect. Along with the wear and tear or a vehicle that I can't drive, paying tolls, making everyone else's life revolve around my schedule more than it already does, the treatment was going to cost about five-thousand dollars! Insurance companies very rarely cover it.

I called the office and informed them that I no longer wanted to make the trip and that I felt I was better off letting everything take its course. The attitude I received during that phone conversation really made me mad. I get that I was going to be a patient lost as well as a decent amount of money, but there is a thing such as respect and they clearly don't know have any unless they are benefiting from something.

To some people, it might be practical and beneficial, but for me, it definitely wasn't. I actually came across a chiropractor, whom is twenty minutes away from me, that does the same exact treatment. He might not be UCC certified, but he has helped MS patients the same way a UCC specialist does.

My advice, if you want to look into UCC care, don't believe everything you read/see. Ask for a FREE evaluation. Don't listen to them when they tell you they have people come from throughout the world, renting a place for months at a time for the treatment. And, definitely discuss the treatment with your MS doctor. Most will agree that a person might feel better after getting adjustments, but it won't make the lesions on your brain go away...

Is it mind over matter??

Summer heat = blah!

06/12/2011 10:59:00

Summer temperatures really do me in... I don't want to go outside in the heat because it drains my energy and then all I want to do is lay down. I find it weird though because I was fine with heat and sun while my husband and I were on our honeymoon.

My previous MS doctor has always told me the further south I go, the better I would feel, and that Australia would be my best option. I always laughed, but the more I think about it, the more I see that he is right. I am not saying I want to move to Australia, but documentation proves that the closer to the equator people are, the less the risk is for developing multiple sclerosis. Hmm.

I used to love laying in the sun daily and I always had energy to want to do things. Nowadays, I'm lucky if I wake up not feeling tired and I don't want to go outside until night time to avoid the heat. I am only 26, but sometimes I feel like I'm 90. I guess this is where "young at heart" plays its role.

My balance is all messed up once again, my vision seems to have changed in my right eye to the point where I have to make an appointment with my eye doctor and see about changing my prescription. My memory still bothers me. I can't remember things unless I write them down and can see them. My psychologist told me that I need to visually see something in order to remember it so thankfully (knock on wood) my left eye's optical nerve has not been affected.

Newho, I am working on forming a support group for the Scranton, PA area so that no one has to feel like I did when I was first diagnosed: Lost. I want to be able to talk with people about MS and build new friendships to help anyone I can out.

Here's to making a difference =)

My personal commitment to MS

05/23/2011 18:46:00

I find it quite sad that the National MS Society expects to raise a pretty significant amount of money towards a cure through... word of mouth? There is absolutely no advertising EVER done to raise the awareness of the disease. WHY!?!?

I met with someone from the NMSS last spring and volunteered to start my own chapter. Guess what I was told? "That will never happen." Yea, well wait and see what I do for the MS Foundation. At least they are willing to give me the chance to make a difference. I have ever intention to do just that, and I have a bunch of ideas to work on as well as a huge support system.

One of the best things about being on Tysabri is that I have the opportunity to meet with people every month and share experiences and struggles. Why does that have to happen only when we are scheduled for infusions? Not anymore! Time to spread word of MS Divas and help the MSF in any way that I can =).

I might not be able to perform a job, but to me, raising awareness and money towards a cure is more than just a job... It's my full-time commitment and worth every second of effort that I put into it.

Neuropsych evaulations...

05/11/2011 13:53:00

So, I get that I have severe anxiety. However, I don't really feel that MS causes me anxiety. I think that everything involved with having MS gives me anxiety. By that, I mean disability and obtaining benefits for disability. It's evident that I have issues that would affect my ability to do normal things such as work and drive... I don't know how much more evidence would classify as sufficient enough to determine this for fact.

I was made aware by my long term disability company that I should get some testing done : a neuropsychological evaluation. These type of tests are not performed locally, nor are they covered by most health insurance companies, mine of which does not. So, why should I have to pay out of pocket for testing that they want!? How come my neurologist, my MS specialist, and my family doctor can't submit documentation and medical reports that would clearly state that I have memory problems and that I am not able to do certain things?? I can't go into a department store without getting lost or confused! I cannot do basic math! I left my husband on our honeymoon for a few minutes and didn't know how the hell to find him or where he was! How does someone want me to go back to work and be trusted with anything!?

This type of stuff makes me more mad that anything!

I have spend my morning doing research on neuropsych evaluations, the who's, the what's and the where's... NYC is the closest. They do not cover my health insurance. The cost is $2,000-$3,500... hourly... and the test ranges from 3-6 hours! My disability company better be willing to pay that because I cannot afford that!

After hours of being tranferred through departments, I am ready to pull my hair out and cry! I have gotten basically nowhere =(. My health insurance company agrees with me that I shouldn't have to pay out of pocket and that they shouldn't have to pay either. It should come out of my disability companies funds.

Time will tell... =(

Disability B.S...

05/06/2011 11:43:00

So normally when I deal with my long term disability company, I speak specifically to my case manager. This morning, I got a phone call from a disability doctor on their staff. He explained to me that he has only had to deal with one other person whom has MS, and he proceeded to explain that the only issue the woman had was her inability to see in one of her eyes. Okay... I totally get that, but #1, why was he telling me this? #2, I have more issues that losing my vision. #3 I am only concerned with my situation and #4, disability companies don't walk in our shoes so how can they just go by notes from doctors??

Once again, I answered the same ol' questions... Do you drive? No, I haven't since last Janurary. Do you think you are able to work? Um, sir, I don't remember what I did 15 minutes ago. Can you walk? Yes, but please find me a job that I can walk to, in which the main task would be to walk!?

How about trying something else? Like, ask me opened ended questions where I can explain why I can and why I can't. Why aren't you comfortable with driving? Why do you think you aren't able to work? What do you feel comfortable doing?

I hate sitting in my house day in and day out, but, I'd also hate sucking at something I was hired to do! I've said it before, and I will say it again... I DO NOT feel bad for myself. I feel bad for the people that need the disability companies to support them over people that are totally lazy and DO feel bad for themselves!

I have declared myself to be a person that WILL make a difference in the world of MS. This is something I am extremly passionate about. I will take being an Ambassador for the MS Foundation to a new level. (Go Me! by the way! lol)

My next step... Figuring out why disability companies are the way they are. And, raising a lot of money for the MS Foundation! =)

Strong or weak? 4/23/11

05/05/2011 19:03:00

If things in life weren't hard, they wouldn't be worth it, right? People are too easily giving up on things because they just want to give in. Not this chick! My husband told me today that I am not as strong of a person as I was when we first met. Keep in mind that this was five years ago...

Five years ago, I was very healthy. I was also in my senior year of college at Penn State University about to graduate and become independent. Five years later, I am not the same girl I used to be. The thing I used to pry myself on has been taken from me, my independence, and right now, I am fighting to make sure I get it back. At least to the greatest extent that I can.

I am not sure he told me about my strength to make sure that I don't get weak on him, or if he really means it. In my opinion, I have only gotten stronger. I make sure that I put up a fight when I have to. I still refuse to let other people's opinions affect the way I live and think. I don't just walk away from stuff that gets to me. I don't know... Have I gotten weak as a person?

I think if anyone that knows anything about me thinks I have gotten weak, they need to tell me how so. They can't just walk away and say "you did." To me, thats an excuse. To me, that means they don't feel as strong as they used to. To me, this is their way of telling me to be extremly difficult. And by being difficult, I don't mean with life, I mean with them...

Hmm. To be strong as a person, or be extremly difficult with them. Life is a constant battle of holding on and letting go. What do I hold onto, and what don't I let go of....

Jan 15th, 2011

05/05/2011 19:01:00

I am not the girl who gives up. Nor am I the girl that lets anything get to me. Until now that is. I always say that MS might cause me to battle, but I am going to take it to war. When is a battle to much to handle? Honestly, I feel better. Not back to "normal", but, who is to say what "normal" is for me anymore? I don't like that my "normal" is the way I had felt at a certain point in time. Doctors ask me if I feel my new medicine is working. I tell them yes... But, the reality of the situation is that I really don't know. Yes, I feel better than I did this time last year. No, I don't feel as good as I did two years ago. But, certain things really bother me and cause me to wonder. Like the whole "MS Hug." It is extremly painful, somewhat terrifying, and according to the doctor in the emergency room, it is caused by a new lesion on my spinal cord. So, I feel "okay", yet I have progression of the disease. Where does that leave me? Am I really okay? Is the "okay" to me, "okay" to them? And, who is to say that "okay" is actually "okay?" Hmm...

I am not comfortable with being comfortable. However, in the whole case of having multiple sclerosis, I would rather be comfortable than questionable. And, if this medicine is working in the way that it is supposed to work for ME, then I am comfortable with that. That is okay to me.

I used to love "not knowing." Now, the only thing I know is that I would rather be aware, than fearful...

A little bit about me... First post on old site

05/05/2011 18:58:00

My nams is Brittany. I have had MS for about 5 years now making me 25 and truly feel blessed to have the disease. It has affected my vision so I like to say that it changed the way I see things. I no longer take simple things for granted and I enjoy life more now that I know I can wake up and not be able to do the basic things I have always done. I like to think that God granted me with MS because I am a strong person and I refuse to give up no matter what happens.

From losing my ability to walk, going blind in my right eye, having my cognition affected and going completely numb on the left side of my body, I can finally say that I know what doctors mean when they ask if I had a relapse in the past.

I hated that I had no one to talk to when I was first disgnosed, and I never wish that on anyone so my purpose in life is to ensure people who have MS and have questions can ask someone on www.msdivas.com.

I have always wanted to make a difference, and even if I can help 1 person, thats 1 difference made.

I have amazing support from my family. I am marrying a huge "fan" both of me and MS in December 2010. My puppy is adorable. And I go to medical professionals that I trust and can talk to about anything. All together, I know I will be okay.

As I like to say, I am an AmBomb"Bad-Ass"ador of MS. =)

Dec. 2009 (Medications)

05/05/2011 18:56:00

I was diagnosed with MS in the begenning of 2005 and originally put on Betaseron. I loved betaseron because it never gave me any side effects. However, I had flare ups in August 2007, March 2008 and March 2009 resulting in my doctors switching me to another medication. My specilist in Philadelphia suggested that I switch to Tysabri but I felt Tysabri was too risky for me at that time since I was only 24, getting married in a year and a half, and to me, the risks for that medication were only considerable when I felt it was my last resort. Instead of agreeing with my specialist, I went with another option which was to start taking Copaxone and do solumedrol once a month. Since my last flare up was my worst and left me feeling really out of it, I am now excited to start Tysabri. Both my neurologist and my specialist feel is it the way to go. Although there are risks with it, the risks of not bring on it are far worse in my eyes. I have done my research and have talked to both doctors about the pro's and con's and I am finally ready to be on it. At my last appointment in Philly, I signed the paperwork, agreed to the terms and the possible risks and cannot wait to set up my first infusion. I just hope my insurance will cover it since it is $2,300.00 a month.