Happy New Year

Hello All!

I missed posting in my blog on January 1, 2013. I have been sick with this horrendous cold since December 26th. It is 1:30 in the morning on January 2nd and I am feeling a little better. I have slept so much this past week I just totally missed out on everything. I think that having a cold and MS is a double whammy for me. For the first 2 days I was not able to walk very well and used a walker for the first time since I was diagnosed. That really bothered me. I never dreamed that it would come down to this. It was not bad to use a walker but the independence in me really showed its true colors. I was not happy but am grateful the walker is there for me to use. Nothing tasted good this week, all  I wanted to do was sleep. I am now ready to join the land of the living.

One of the milestones for this year for me is to lose a ton of weight and get my legs back in shape so that I am able to walk more. I will be 50 this year, wow! I have had MS since I was 28 years old. I have achieved a lot and have come a long way in being at peace with myself. More comfortable with the fact I have MS and it is not a death sentence for me. Now I want to focus on staying really healthy by eating right removing food (that comes from animal) from my diet. This is a huge goal for me. I plan to post in here the progress so everyone can see how I am doing and if it makes a difference the diet change.

Stay Strong!

 

Hello Again!

It feels like such a long time since I actually sat down and wrote something. How am I? Well, things have happened since the last time I wrote in year was a little over a year ago. I moved. Different state. Family changes. In a relationship. Found a job. Lost my job. Started my own company. Struggled. Life changes.  Met a ton of people. Made changes. Learned things. This is pretty much the basics of what has happened in the last year.

Now, onto my health. Not so hot! Wish I could say I am good but I am not. There are days that I just want to give up and sit in my chair and do nothing, watch TV all day and wallow in self-pity. Oh wait! I do that sometimes. Not all the time, but sometimes. Things get so hard, I just sit and lose myself in TV shows that have story lines with other people’s lives are much worse than mine. Sad huh?

The days that I don’t wallow in self-pity, I work on my business called Deaf Positive Attitude Health (D-PAH!). This was established on January 7, 2011. Soon it will be one year and what a year. Many changes, business changes, learned about 501(c)3 status, partnering, collaborations, fundraising, people not committed even though they wanted to, lost money on some fundraisers, wrote a grant, after 6 months of hearing nothing was awarded money through another agency, working with clients now, developing new things. This business works with Deaf and Hard of Hearing people with their health problems, brings awareness and education to those that need it. This grant I was awarded money with helps people with their Diabetes and other health issues, making changes to their food plans, exercising, wellness aspect of it all. After all, we know that being diagnosed with Multiple Sclerosis you never know what to expect from one day to the next. One day we are fine, and then the next day, bam! something happens and we have to re-assess things because our body does not cooperate with us.

This year, starting over the spring, my right leg began acting up. I decided to start walking again and made the attempt to walk a few blocks from where I live. My right leg gave up on me, starting dragging after walking for about 10 minutes. I made it to the end of the block, but had to turn around and go home because I did not think I was going to make it back home without falling down. I thought it was because I haven’t really exercised in so long my legs are losing their mobility to stand up to things. I believe that is what happened. I have not really taken care of myself in the last 2 years. I have really neglected my body. I admit it. I am paying a huge price for this now. I am not able to stand for more than 2 hours without having huge pain in my right leg and then I limp, and finally the leg just gives out and I am wobbly and unbalanced. Yep! There ya have it peeps! My body is not cooperating with me right now. I am frustrated beyond god knows what. Also, another thing I noticed, when I am tired I tend to push myself more and more to get things done, I realize that I cannot do that anymore. My body does this weird thing that I get really agitated inside, and it shuts down I have to go to sleep. I need to take a nap in the afternoon for 45 minutes to an hour to re-energize myself because I cannot do anything if I do not take care of what I am feeling. I have to listen to my body more. I have to take care of myself. I am not well. I have to accept this. People, things, places, family, just have to wait. I come first. I cannot help you, be with you, enjoy things, cook, clean, write, if I am not well. I may look fine on the outside, but inside I am not.

I have hope. I do. I am reading this book by a doctor. His name is Dr. John McDougall. He has written several books on how our bodies are affected by the foods we eat. He works with patients who have Diabetes, Heart Disease and Multiple Sclerosis. Some of the patient’s testimonials have hit home with me. Especially one, by a woman who has MS. She has a story that is very similar to mine. Her weight gain from medicines and what she has gone through. She followed his food plan and she no longer has any problems with her MS. The book basically talks about changing the way you eat. It is called “The Starch Solution”". The woman now walks 5 miles every day. She lost all the weight. She no longer takes medicine for her MS. Her last MRI results in shrinkage of the lesions on the nerve cells caused by the MS. I am sold. The book actually makes a lot of sense. It is basically eating things that do not come from animal. I will be documenting my journey to better health on my website http://www.dpah.org I want people to see what I am doing to making healthier changes to my life. I will also be documenting my progress about my MS on this blog too because I know that people need to connect, learn, re-evaluate, share about our MS issues. We have to know especially in the Deaf and Hard of Hearing community that we are not alone. There is a way.

My new motto! Stay Strong!

Until then, enjoy life!

My New MS Momentum Magazine 2011-2012

Today I got my mail and in the mailbox was my MS Momentum Magazine. I was just thrilled to death that I got this magazine because it just proves that my neurologist is really Dr. Idiot.  In my last visit to my newly found neurologist (as I have relocated to a different state - he is my ninth one) - made it abundantly clear that there is no pain with MS. Ironically my primary care physician agreed with the neurologist – she is really sweet people – honestly does not know any better. How funny are these two people? Such a riot to listen to these professionals talk to me about something they do not have a clue about. Yea, they may have the degree but they definitely do not have the “I know how you feel” experience because they do not! It irks me every time I go to see these wonderful people who charge me a fortune for 15 minutes of painful diagnosis after having to wait 30 to 45 minutes to see these god-given talented people – sorry as I am reading what I am typing, I must be extremely annoyed at the moment.

After listening to this neurologist totally disregard what I know about my body – I mean since I have lived with this for 18 years – that does not count at all people!!! Mind you! I am not a professional! He treats me like I do not know what I am saying and tells me this in his manly squeaky voice – if you do not like the way I do things in this office I suggest you find another neurologist after waiting almost 4 months to get in to see someone and proceeds to tell me why I am wrong. I love these people I really really do!!!!

Ok peeps – as said in this wonderful informative magazine – the name of this article is “Getting a HANDLE on MS Pain”. What a huge lifesaver. I know now I am not going nuts. I do have pain. I do I really do! The article goes on to say that the pain cannot be measured – I agree 100%. Everyone has their own pain. My pain is the constant numbness, tingling, muscle spasm waking up having to stretch but the body is locked in this mind numbing spasm that does not allow me to move for a good 30 seconds. Every morning when I stretch I constantly remind myself my neurologist I just love him so (extreme hatred for the man really)…… he knows what he is talking about – I cannot move because I am in pain, but he is right there is no pain with MS! Honestly!

Stay healthy – stay focused – stay strong

Until next time!

A new FB page to talk about your MS

I was browsing on Facebook this morning and checking my food blog to see how many hits since yesterday. I came across this FB page http://www.facebook.com/#!/MSWorld.Fan.Page and I decided to like it – it’s amazing when you read other people’s stories and know exactly how they are feeling. I was relieved (too much irony in this) to read about other people taking different medicines and what the side effects they were experiencing are. I always felt I was nuts when I would wake up in the middle of the night shivering to death because I had given myself an Avonex injection a few hours before. Or when someone said they are having problems with their liver enzymes I was like – God! I’m not nuts. My body is not rejecting the injections and causing my liver enzymes to go up. Pam – you are such a dork sometimes. I do not take the injections anymore because I did not have insurance at the time and was too lazy and depressed to get help through Biogen for my Avonex as well as I did not want to damage my liver anymore. I changed the way I eat, eat vegetarian food a lot and stay away from a lot of carbs, and eat organic as much as I can afford to. I try to eat foods that have Vitamin D in them because research shows that MS can be from a Vitamin D deficiency. Because I took predisone for so many years due to my MS attacks, I now have Type II diabetes. Predisone causes your sugars to elevate very dangerously and caused a lot of weight gain.

I advocate for myself more and more because neurologists are not always right. They do not know everything about MS – MS is a mysterious disease. My current neurologist that I just recently met because of an MS attack told me that he does not believe I have MS – after countless of MRI’s since 1991, the reports confirm I have it – he still doesn’t believe me. He wants to do a spinal tap to rule out things. PULEZE! Why! I have had over 10 MRI’s in the last 16 years – and each one says I have it there is “no doubt”  written in the report. Oh and he said that there is no pain with MS. WHAT! Please! What a douche bag I thought. He had a huge attitude when he walked in the room. My friend who brought me because I could not drive due to my hands not cooperating was not happy – she even sensed the doctor had a huge attitude. I wish I could reverse roles on them and make them feel like you are worthless – but then again, no one can make  you feel that way but you! I got my shots in here and there and he quit the attitude after I started telling him my history.

Intersting even people misunderstand too. I recently shared my experience about my doctor’s visit on my blog and I found out from another good friend that this person told her that I don’t have MS! Peeps need to read the lines carefully before making comments about my health. I thought how funny first numerous neurologists now certain people. When I shared my symptoms with people on my blog, one person told me that this person told her I was so bad off I was not able to do anything anymore. I think – ok – still need to educate and make other people aware how sensitive this issue is for some.

Until then.. Stay Healthy! Be Strong!

 

Doctor’s Visit 7-26-11

I saw a new neurologist just recently because I have been suffering from an attack for about 3 months now. Interesting visit since we all know that after living with MS for 20 years, you would think that the neurologist would treat me with a little bit more respect. When the doctor came into the room I felt that he already had an attitude not sure if he was having a bad day or not but honestly who cares if he was having a bad day, I have a disease that does not have any promise of a cure. Puhleze!! get over yourself I say.

The examination started off with the doctor saying I do not have any of your medical records so I am not able to make a proper diagnosis. I told him I brought some records with me but he dismissed that. Hmmm interesting. I started to tell him what was going on and before I could finish explaining my symptoms he rudely cuts me off and says I do not think you are having an MS attack! I am thinking to myself what a complete ass after all these years I still get Dr. Idiot’s who claim they know everything about me and can make a diagnosis magically without any medical records whatsoever!

I tried to explain to him about the pain that I was feeling. The pain was like having ice water run through my veins and to describe what I had been going through the last 3 months. He said oh there is no pain with MS. If you are experiencing pain it is not related to MS. He cuts me off again! What the hell! Now I am fuming, especially having a super crappy meeting at work, this doctor was just icing on the cake. He then proceeds to tell me if  you do not like the way I do things, I suggest that you find another doctor. Why would I do this after waiting almost 2-1/2 months of trying to get an appointment to see someone?!?

I told him that I disagree with his theory that there is pain associated with MS especially with me. I got through the examination with the usual pokes and prods, touching your nose, coordination, balance tests. He says oh yes, I see there is some weakness on the right side – oh now he says ok she might have it and some of the symptoms I told  him relate to MS in that way. Duh!

I am tired. Its been a long 20 years to argue with doctors and specialists who do not believe me after extensive MRI tests I have done and every single report says I have it. The visit ends with the same thing, blood work, EEG, MRI, doctor reports needed from another doctor. Oh he says yes, need a spinal tap done, which I do not agree to. He looks at me with disgust when I say no.

Well, he leaves me with make sure you keep a diary of what is going on with you. Nothing really new. Will go for testing next week, that should be interesting.

WOW! It has been almost a year

Hello –  it has been almost a whole year since I have written on my MS blog.  So much has happened since I have written last. I have moved to a different state because of work.

I am suffering from  a really bad attack that has affected my left and right hands. This attack has made me think of how much we take our hands for granted every day.

Doing the simplest things like taking  shower, holding  cup of coffee, cracking an egg, blow-drying my hair, buttoning or zipping up pants has made me re-think how I do things everyday. Even typing – I went from typing 110 words a minute to using my left and right pointer fingers to type words that take more than a minute to finish has sorely tried my patience the last two months. It has been difficult to sign which is how I communicate. My roommate has been absolutely amazing helping me with the simplest every day things such as blow drying my hair. People at work have been patient and awesome, opening up a stapler, peeling off backs to sticky labels to put on file folders. I am fortunate to be around people who understand what I am going through.

It has now been 2 months and 1 week, April 23rd was the day I was not able to use my left hand and then 3 weeks later my right side was affected. It is hard to stay positive and cheerful because I do not know if this is permanent – I am hoping it will go away. Here is the best part – I have to wait 6 months to see a neurologist as that is the norm here. Interesting. I bet the diagnosis from this specialist will be - ahhhhh! yep – “yep, you’re having an attack!” $300 dollars later. No! tell me something I don’t know. Hope I will get in to see a specialist soon.

Keep you posted. Stay healthy!

MS Support Group Get Together 7-17-2010

Yesterday was a good day.

My MS Support Group got together to catch up on each other lives and to see how we all are doing. What was so nice was that one of the support members Katie offered the use of her home to have the meeting this time. We brought our siblings, spouses and friends with us to talk about what they go through when we are having a hard time dealing with different things that happen to our bodies during an MS episode or attacks as I call them.

We had lunch – some brought something to share we had the chance to talk about healthy eating. I introduced a new dish that I have posted on my food blog called Grain Salad which was made with Quinoa. Here is my blog link with the recipe http://blog.simplyhealthycooking.com/2010/03/06/quinoa-salad-with-dried-apricots-cranberries-coriander-cumin-and-lime-vinaigrette/ - I made some adjustments using things I had on hand. Instead of lime and sugar I used an orange. Instead of olive oil I used Grapeseed oil. The idea of this recipe is to see how easy it is to change food ingredients using what you have on hand. Everyone talked about how food affects their bodies, mood swings and the overall healthy feeling when changing the way we eat.

I was curious for my own benefit to find out what everyone feels when they are tired. The reason for this was my cousin who was diagnosed with MS also, said she often feels like she is drunk even though she had not had anything to drink. Katie said that she becomes very crabby and wants down time, Lesa said she her body becomes off-balance and cannot move as much, Myra said she just feels very off with herself and I shared that I become extremely agitated and my body automatically rebels to do more as I am always pushing myself. We all agreed that we need to listen to our bodies more. Karen my sister, shared that when she sees me like this – she knows I need to sleep. Once I get 1 to 2 hours sleep I am fine. I am able to continue with what I was doing before. Interesting analysis. I wonder what other people feel?

After lunch we met in another room so we could sit down and really talk and connect because it had been a long time since the last meeting.

I brought up some new medications on the market that was recently approved by the FDA. One was for Lesa’s benefit because she has much difficulty walking. The name of the drug is called Ampyra – I gave information to Lesa to discuss with her doctor. http://msassociation.org/news_center/article.asp?a=ampyra

Vicky – talked about her mom being a House of Representative and thought of having the next meeting in her home to show support? What do you all think of this idea?

Lesa – was enjoying herself and talking about many things with us. It was so good to see her – after almost 2 years.

Myra shared that she called the MS Society to see if they could help her with finding someone that can clean her home and help her do some things like food shopping and other things that we often take for granted. They were able to help her find someone – free of cost to help Myra do the simple things that is often a battle for most. http://www.nationalmssociety.org/chapters/MIG/index.aspx

Katie shared some valuable magzines that she reads to find out all the latest news on MS reserach, and shared her doctor that she feels a strong connection with her MS situation. Here are some of the magazines she subscribes to – go to the websites and subsribe to them so you can get their latest news via email or the mail:  www.msfocus.org and www.msassociation.org  – she also brought out back issues for Neurology Now and we all grabbed subscription papers – but you can subscribe online at www.neurologynow.com

Katie was talking with my sister and Myra about food especially MSG and the side effects it does to your body after eating foods with MSG. This conversation led her to bring out another book I plan on purchasing – Eat this and Live by Don Colbert M.D. – very valuable food information in this book – http://www.amazon.com/Eat-This-Live-DONALD-COLBERT/dp/1599795191/ref=sr_1_1?ie=UTF8&s=books&qid=1279467987&sr=8-1

Katie is lucky I did not walk off with the book and keep it for myself – Ha!

Vicky is one of our supporters/friend/driver/the everything person – she basically shared some of her mom’s experiences with MS and her knowledge of food and what is good health wise. Thank you Vicky.

Karen – my sister and supporter – shared her thoughts about what we go through and how she could not begin to imagine. She can only be there to support and do what she could to make things easier.  Basically words of encouragement to live by – Attitude is Everything”.

Our group session ended around 3:30 – all in all it was a great get-together

-Everyone wants to meet again next month – what is a good time ?? Please email me and let me know and where can we all meet so it is even driving time for everyone – in someone’s home – or what.

Until then, – Be Well