Hello, it has been a while since I did a v-log about my MS. I wanted to tell you something that happened to me a few months ago, and I am still obsessed about it and cannot seem to let it go.

I have nerve pain in my arms and hands. Sometimes my hands become cold and it hurts. It is like almost frozen, but it is not, just the inside is very cold and it is hard to sign, type, and do simple things every day.

Someone in the community that I know very well insulted me. I felt like – WOW! I crossed my arms, and put my hands underneath my armpits, while watching people in a community event. This person insulted me and said “you have an attitude because you cross your arms and people think that you are mad, and that your face is all red”.

I was shocked and did not expect that. My reaction was confused, but then I got defensive because I am in pain all the time and I should not have to defend myself. Because the people that I hang around with know I have MS. I was like – how dare you judge me, because of my face my appearance, I look crabby, but really I am in pain 24/7. You all need to grow up and not judge people because of the way they look.

Sometimes I cannot move well. I cannot take a shower every day. I cannot write. Sometimes I cannot sign. So, where does that person get off insulting me? I just cannot seem to get past that. I am thinking that do I need to educate people about MS more because you do not understand. On the other hand, you just want to be negative about people and the way they look. Think about it, because it is hurtful. It is upsetting and it is wrong. Where is your respect to people who have a chronic illness?

Thanks for watching and letting me vent my thoughts and feelings. Have a great day.

Tuesday 02/23/16

My MS and Me Chronicles

Brain Fog Update

Hello, everyone my name is Pam Groth.

Today is Tuesday, February 23, 2016.

I want to talk about my MS and how I have been feeling since my last vlog.  I am feeling better. I still have a little bit of a brain fog left, but I have been sleeping to catch up with my rest, drinking a lot of water, eating specific types of foods, staying away from salt/sodium, the heavy salt in foods, which I think it caused some of my brain fog over the weekend.

I realized that the pho food I ate from the Vietnamese restaurant had a lot of salt and I did not feel good the next day from pho soup from the Vietnamese restaurant.  I think I am better off making my own bone broth to help my health better.

I have been thinking about my MS and wondering if anyone experiences that same feeling when going out to eat, the type of foods that we order in the restaurants. I typically go to good restaurants or bad restaurants. Does that affect our MS?  I know it affects mine. I have to be very careful with what I order and sometimes my willpower is not that great. Most of the times I try eat simple salads  and baked chicken depending on where I go.

I am wondering if anyone feels like I did for the last 3 day, feeling blah, tired, lot of pain, very foggy disoriented kind of feeling. Let me know.

Thanks for watching.

February 21, 2016
1:30 pm
My MS and Me Chronicles

Brain Fog

Hello, my name is Pam Groth. I am starting to talk or try every day to share a little bit about myself with my Multiple Sclerosis (MS). I want to share some of my stories, my concerns, frustrations and I think some of you can relate to me.

Today is Sunday, February 21, 2016 130 in the afternoon. I woke up very disoriented like a brain fog. It was not clear thinking when I woke up and I felt very heavy, as if I have a heavy feeling, just cannot walk right, cannot move in the right way, and just felt very odd. I get that often. I do not know if you feel the same way. It would be nice to share if you do and what you do about that.

Today, I decided to try to drink a blueberry smoothie with coconut milk and cinnamon to see if that improves my flexibility and clear up the fog. I am not sure why I have that. I am thinking that maybe it is from my food that I ate yesterday or I studied so much for school, reading causing my eyes to be a little bit blurry. I am not sure that if it is related to one of the symptoms of the MS making it worse, I am just not sure.

Today I feel blah because I have a big paper due today. I feel like I am off and hoping that the blueberry smoothie will help me. If you have, that problem let me know. I am curious what do you do and how do you cope with that? How do you work it out and make it better, because today, I am very tired.

Oh, also, I took four (4) 200 mg Motrin’s ibuprofen because I had a bad headache yesterday, so did that affect my brain fog?

I am curious, what are your thoughts?
Thanks for watching.

An Interesting read today about the “MS HUG” – how many of you know what that is? It is like a gripping sensation that runs from your stomach and back area that feels like numbness, falling asleep, coldness, really there are a ton of words that could describe the “MS HUG”. How do you feel when this happens? I know I it’s tough to take a shower, sleep or hug someone else. It is not a great feeling how do I cope?

Another interesting read today about “Food” – since being diagnosed with MS – how many of you eat healthy? Does it help? Does it make the symptoms go away? Do you feel better knowing that you are eating healthy or it makes you feel great and the symptoms of MS goes away? I haven’t seen a difference yet and am wondering if anyone can answer?

How many of you actually listen to your body when tired? Do you rest? Do you ignore they fatigue and plod on? I know when I don’t rest I am very moody and my body just gives up.

The weather is changing. Does your body feel weird during season changes? I know mine does. What do you feel when seasons change?

Still wondering….

This week I have experienced a lot of anxiety and rambling thoughts that do not seem to quit when I am trying to sleep. The thoughts of personal problems, relationships, and financial issues seem to affect my ability to cope with my MS more often that I would like. People that make comments thinking that they have the last word on an issue or make things more difficult than they need to be does not help my MS stress level at all. How do I cope with this?

My legs become like Jello, my spine becomes like a hard hot electrical bolt that shoots down from my neck, back and my legs, and my hands become so tight and painful to touch anything. What do I do to help this? When I get upset, I tend to cry out of frustration I think more than anything – and then I get mad at myself because before I did not have this problem of wanting to just give up and forget what I need to do to have a successful life. My biggest struggle is my independence I think is slowly being taken away from me. I am a neat person or was a neat person. Now I am lucky if I can keep things from overcrowding my space because I am not able to clean as often as I would like. Then that adds to my anxiety and stress levels. How do I cope with this?

How can I explain how I feel to people when they sometimes make comments about the simplest things that just want me to go up to them and push them down. It takes every fiber of my being not to scream at the person until they leave running. It’s bad sometimes. How do I smile, accept and cope with this?

Why do I have to swallow my irritation and frustration at people and things? How do I cope with this?

Chalking it up to just a bad and frustrating day

I am always apologizing being in someone’s way when I am not able to walk fast to cross the street or in a public place. Hmmmm… I am wondering why am I apologizing. Too damn bad, they can wait, get behind me and wait!

I feel guilty when I use my handicap sticker. Oh the nasty stares I get from people especially elderly people who think I don’t need it. I have to remember that the doctor would not sign a handicap sticker application from the Motor Vehicle department if I did not need it. So blow it out your a*s!

Another one.. my handicap sticker is broken, I have it taped with a lot of clear tape and I cannot hang it on my mirror so it sits on my dash board. My sister thinks I am a dork for not getting another one. It costs $3.75 – she gave me $5.00 but I spent it on coffee at Starbucks. I forgot she gave me the money….. I thought I was rich for a second.

Last one on the handicap sticker….  I had one person walk around my car staring at me with that Immmaaa gonnna report you to the police face. I show the sticker, the looks I get – priceless! I want to run to the person and push them down. But my legs won’t cooperate – dammit! oh wait.. I had one person follow me into the store and say mam! mam! you are parked in a handicap zone I say yes I am because I have MS – oh she says… PRICELESS!!!!

The latest for me – I have to use a electric scooter when I am in the grocery store, I am lucky I make it to 3 aisles of food before my leg buckles and I look stupid hunched over walking. I just want to lay on the floor and cry but I don’t. I am Wonder Woman I refuse to give up. The scooter allows me to reach eye level things  on shelves and if I am lucky one shelf below. If I need something on the top shelf, I have to rewrite my food recipes because I cannot reach something. If someone is with me, I make them do all the work I just sit there an zoom fast down the aisles. Being short doesn’t help, I was not blessed with long arms. Oh yea and to the rude people that park their carts in the middle of the aisle, knowing I am behind or in front of them do not move their carts so I can get through. I have a mind to run over their feet so they can be in extreme pain for 5 minutes. That would make me very happy.  Here’s another — I love when people crash their carts into mine because I am in the way. Ok then…..

Oh wait with the scooter, no chance of reaching the food buffet at Whole Foods. The salad bar is in the middle of their cart so when I need something I have tongs but no food, they are not long enough!!!! It’s too far!!!!

People who comment on my weight…. you can work out for 15 minutes… come on…. you can….. it’s only 15 minutes. Yea sometimes I can then I am paralyzed for the next two hours from the sweating, my legs have gone completely numb I am not able to move for a few hours normally…. sure I can exercise… no problem!!! I drop weights because my hands sometimes let’s go of things. Sure I can do it exercise…. NOT!!!!! Oh yea… here is a good one – do yoga!!! It’s great for you!!! Yes it is, I admit it, one of the best exercises you can do, if you can get up off the floor after you’re done…. sure!!! and rolling over doesn’t help.

To the people who think that staying on top of your game like eating right, exercising, blah blah blah… the list goes on — sure that helps! trust me I do it everyday, BUT….. when your body does not cooperate with your brain to move – how does eating salad help when you have an attack or your body doesn’t cooperate?

To the people who say “wow you don’t look sick!” Thank you that means a lot to me I try very hard to be presentable every single day I leave the house to do things. I don’t feel sick it is just my body does strange things no one sees all the time. ‘The fatigue is just unbelievable but you don’t see that because I hide it, I go home and sleep for 2 hours in the afternoon. Oh people say you lucky dog you!!! Do you honestly think I enjoy sleeping all the time? Hell No I Don’t!!!! I have things to do, places to go, people to see. I want to just throw weights at those who say that!

Believe me I try not to compare myself to others and their pain but it is hard. Living with this for 28 years sometimes my patience is just really thin.

To those who think I have a hate-obsessive thoughts about people who have done wrong things to me… Well yea… it bothers the sh*t out of me. I don’t think that goes away, I mean you move ON probably a few years later but I don’t think you ever ever ever forget it! And bless those that say “don’t dwell on it – it doesn’t do any good!” Hmmmm…. I wonder. I mean I don’t dwell, I just don’t forget!

I love this one.. will never forget it… On a job that I relocated to from my home town a few years ago… I was experiencing an attack and the President says to me “does your pain block your ability to manage an office or your staff?” I had to stop myself and really think oh okay then,  is this my boss? is she stupid, oh my god, she is stupid – why am I here and how did she become the President and win an award for something and I forget what? and the Treasurer of this organization was nothing to talk about. She laughed when I told her I had Multiple Sclerosis – hmmm…. ok great! She offered to give me her doctor’s name who doesn’t specialize in MS, I had to take it graciously I didn’t want to come across as not cooperative and increase my chances of getting written up. Oh wait….. I am not there anymore. And for those who think they know who I am talking about – do you?

On a positive note.. I have a really good neurologist now. Wow after 28 years I can finally talk to her and she understands. Unbelievable!!! and… my primary care doctor is a Vegan – woot! woot! the funny stares stop when I say I am trying to eliminate animal products from my food plan. It’s a good thing. At least I don’t get those dumb-a*s stares from the other ones – well…. hmm… anymore. Well.. for now anyways.

and to those who just do not know any better….. TRY A LOT HARDER!

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!

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!

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!

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!