Sometimes I feel stuck with people and things in my life. People do things that annoy the crap out of me and I feel stuck because I cannot tell them how I feel without offending his or her feelings. I think one of my biggest peeves right now is the texting and the cell phones and having to wait a long time for a reply back.  I needed help with something with a  food project that I messed up and was hoping to get some results that evening. I had a lot on my plate this past  weekend and I was kind of stuck ina rut. When I paged for help, I got one reply and then silence for almost 50 minutes. Here I am sitting at the desk and thinking ok, should I give up and tackle my cake projects or should I wait and see if I will get a call back. Lo and behold I get a text about 45 minutes later  – oh I’m out with friends right now – I am thinking to myself, gee it would have been nice just drop me a short blurb and say oh I’m sorry I made plans with all these people can I get back to you tomorrow? That would have been so much easier for me to handle instead of getting all annoyed waiting for someone to reply. Do you have that happen to you a lot.? Well this type of behavior is just a huge waste of my time and when stuff like that happens I have to re-evaluate things. – Is this working? Do I need to make it better? Remove the equation that is the problem?

Went to the doctor’s last week because there is crap going on with me. First thing was I did something stupid like cutting my toenail wrong and got it all infected and it is just awful looking – all red and icky. Had to go to the doctor to get the toe looked at and one thing led to another. I just love when that happens. Blood work, the usual pee in a cup get it all over your hands and have to wash my hands for kazillion minutes to disinfect them. I should do a survey to see how many people can pee in a cup without getting anything on themselves. That would be a very interesting survey.  Although my sister will probably think I am nuts.Now I have an appointment to see a foot doctor for my problem toes, and made an appointment to see another neurologist this will be my 8th one here in Michigan – I heard good things about her so we will see how that goes. That appointment does not happen til next month. I continue to suffer in pain on the skin until 3 more weeks. Can I handle it, yeah, have had it for so long what’s a few more weeks. It will be people thinking I am in a rotten mood for 3 weeks – not like they don’t think I am in a rotten mood all ready.

Ok, I think I am done griping for the weekend.

I started swimming last week. Went swimming Thursday 4-22-10 and Friday 4-23-10. Excercising felt good. I have not excercised in such a long time and that showed when I swam. My left side is so weak I could not really swim laps. I had to do arm exercises and walk back and forth in the pool so I could focus on building up strength. My childhood friend surprised me and offered to pay for my gym membership. I was actually floored. She said she understood what I was going through and felt that swimming would help me feel better. She meets me at the gym on Monday, Wednesday and Friday so that she can be my swim buddy. It is a nice feeling.

Yesterday I went with my sister to her softball practice game that she has with the women. I was their catcher while the pitchers were practicing and helped catch the ball for the women batting. I miss softball. I actually resented my MS yesterday. I was so angry that this disease has taken over my body and I am no longer able to do what I was able to do 20 years ago. I am sore today but it feels good in a way because I am not letting this defeat me. I know that I can never play softball again, but I can still practice throwing with my sister and bend and stretch as I work with her. Today, was a day of moving slow, but I think that as I work at catching and throwing the ball, I will build up my muscles again. Swimming will help me with balance in the water and build up my leg and arm muscles. Hopefully, things will stay on the positive side.

Well, after a few posts of me complaining of my body, nothing is compared to how I am feeling today. My hands, middle part of my body and my feet are throbbing. I wonder is it because I have been on my feet for the last few days decorating 2 cakes for 10 hours one day and cooking the other days? Staying positive and having a good attitude becomes difficult and being patient with others takes a toll on me. When I feel this way, I do not really care what others think because I know that I need to focus on myself at the moment.

I went to a softball game the other night and I am sure the cold weather did not make things any better. People slapping me on the back, punching me in the arm and hugging me – I know they do not understand but it made me want to order a T-shirt that says “I love you guys too, but don’t hug, slap or punch me please”. I wonder if they will get the picture. I met someone who I had not seen in a long time. The last time I saw this person was at a CODA meeting and we shook hands. When we did that, this person squeezed my hand so hard I had muscle spasms up and down my arm for a while.  Oh well.

Today was a tough day. My body has not cooperated all day. I was not even able to grate parmesan cheese with a cheese grater. I needed someone else to do it for me. That is frustrating having to depend on someone else to do things for me. I hope this is just a  phase and will pass in a week or so. The weather is changing spring is here. I noticed that when the weather changes I go through changes – does that happen to any one else?

I hope that people will comment because I am very curious.

Since my last post, things have been pretty much the same. The tingling, fatigue and just basically feeling sorry for myself at times wondering when I will have a pain free day. I talked to a friend today and asked her about something I learned yesterday meeting another person who was diagnosed with MS two years ago. She was wondering as I was.  The person I met yesterday, along with MS she has fibromyalgia syndrome (FMS). What is fibromyalgia? Here is a brief description from the Mayo Clinic website. 

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

I wonder if I have this. Every time I do strenuous things I get this tremendous pain in the upper part of my shoulders that when someone thinks they are providing me with relief by give me a massage and all they are really doing is making it very painful for me. When people touch me in different places around my body such as giving me hugs I want to scream. But often I am misunderstood as saying “oh Pam does not like to be hugged”. Puhleeze people — I am in pain most of the time – I would love to hug someone but in weighing all the facts and scenario(s) I would rather not cause more pain to myself  more!

But I wonder – if I do have this. I plan on doing a very detailed calendar journal just to see if there is a pattern. If there is, I want to talk to my doctor and see if there is something else going on with me. Will keep you posted.

Be healthy!

Now I am frustrated again. On Saturday, I started feeling like I had a timer or alarm clock inside my body. The feeling of buzzing happens on the bottom of my right foot every 5 minutes or so. Such a huge distraction, I am wondering if this is going to be a permanent thing or not.  I have never felt like that before. Now it is hard to focus when I am sitting at the computer or working on something. Along with the ice feeling in my veins I now have the buzzing. How can I be positive about this whole thing I am wondering.

Happy New Year Everyone! It is officially 15 days into the new year and so far it has been interesting in a non-exciting way.

The good points so far is that I have not had a relapse in a while. I think it’s been about 2 years and not counting. I think that everytime I think about things like that I jinx myself, so am trying to stay on the positive side of things. How many of you have made new year’s resolutions? I made one and everyone thought it was funny. Pfbt!. So I have decided to make another one which is to stay on the positive side of things when dealing with life situations with my MS and to make an effort to post and write more in my blog. Let’s see if I can make that commitment.

This winter has been rough for me. The cold really makes my body hurt. I feel like I have ice water running through my veins. I just love that feeling. NOT!  Experiencing a lot of tingling in my legs more like in my spine area and the bottoms of my feet. I cannot tell if it is from my diabetes or not. It would be great to pinpoint that down so I can figure out how to relieve the pain without medication. Other issues I have been experiencing is my legs sometimes throb unbeliveably so. I am not sure if it is from standing all day sometimes when I am experimenting with cooking recipes or what. I am trying to not think the worst. Is it a sign of things to come? Here I go again, as my sister calls me “negative nelly” – well can you blame me?

I have not heard from any of my MS pals especially Myra. I need to make an effort to email them and see how they are doing and maybe do a get-together again. Would love to just do chats and see how everyone is. On that note, I think I will send an email to some and see how things are going.

Til next time. Have a great month.

Interesting article I read today in my new MS Momentum magazine I received today. The article talks about “hugs”. HA! As most of my family and close friends know me – I am not a hugger. Never was, but now even more so because half of the time I am always in pain. Sooooo, when people want to hug me I want to have a tantrum but I oblige and suck it up and give out hugs. The article that I read was called “Things you might want to avoid saying to someone with MS”. Gee I wish I can tape this on me where ever I go because — frankly the article says it all.

“BUT YOU LOOK SO GOOD” If I had a dollar every time someone said this to me, I would be extremely wealthy. Sure I look good, I always look good, I’m pretty, gorgeous big woman. But… that does not mean I feel great on the inside. Geez. Hello people! get a grip. #1 rule just because you look good, does not mean you feel good or have an illness. #2 rule suffering is not always visible. Just because I don’t have the look of pain and there are actually visible things on my body that you can see that will determine I am ill. This is where the MS HUG comes in. I am always feeling like I have a tight rope or noose around my waist and back area. When people hug me, it makes me so tense because I never know if I am going to be in pain or not, how about when I am sooooo tired I cannot function  – people say to me, oh you just need a good nights sleep – WHAT! Hello again, slap yourself silly! It is one of the most common symptoms of MS – fatigue – It hits at all times of the day – does not matter if I got 12 hours of sleep.

Another one I just love this one — I have met many people in my life time. It never fails me — I always get that one person “OH, I KNOW SOMEONE WHO HAS MS!” – PULEEZE people – MS does not come in one size fits all (words from the article – OMG I love that) or shape. Everyone has different symptoms, everyone has different problems. Just because you are feeling tingling on your feet does not mean you have MS. You have to be diagnosed by a neurologist and an MRI scan to determine you officially have MS. I have people come up to me all the damn time – I am dizzy — well so am I, but I don’t announce it to every single person I meet, I love this one – I am just like you! I have everything you have – ummm no I don’t think so – if you only knew what has been going on with me the last 3 months and last 3 weeks, there is no comparison –

Last but not least – “ARE YOU SURE YOU HAVE MS?” – Well, Golly Ms Molly – if I wasn’t sure I would not be talking about it now would I? Yes I have MS but I don’t have to have a detailed explanations as to how I got it now do I? Do I need to have a license to have MS – to have a validated excuse to talk about it? – Hmmm – there’s a thought. There is nothing more aggravating when someone says that to me, what a way to throw me off  balance and think – are you smart or dumb?

I just think by reading this article, it has really hit home. I think of all the years I have had MS and the explanations I have had to give to people even my own mother didn’t understand what the disease was. All she saw was how fat I was! I know that people mean well, they are concerned and for those of you who have taken the time to see how I am doing – I really do appreciate that, just not the 1,000 questions.

Today is October 4, 2009 there has been no improvement in how I am feeling. I think I have gone beyond frustration. I have given up and have accepted that I may always have these feelings of tingling and achy muscles. The weather has changed from warm sunny days to cold crisp fall days. Fall changes to winter and then a whole new set of pain pops up. I feel like I am sitting on a bag of ice for the next 6 months. Then spring comes and I begin to thaw out. Then I deal with summer and people’s complaints on the air conditioning – ohhhh it’s so cold! Too bad! Put on a sweater. You can warm up but I can’t control my body temperature.  Where can I go so I feel completely normal? I wish I can find a place that stays 70 degrees all year round and people do not complain about the temperatures. . I think I would be a much happier person. I was in my facebook the other day and all I saw was people complaining about how coolllllddddd it is outside. The temperature is 50 to 60 degrees. Puhleeze that is not cold. Cold is 20 and 30’s. Wake up and smell the apple cider!

I got a comment from an old friend, Myra – she seems to not be doing ok. I wonder if I am at that stage too with the pain of muscles and tingling. Because right now it has been over 2 months I have not seen any kind of improvement. What does this mean? Myra has decided to see her neurologist after all this time of trying out homopathic medicine. Maybe the homopathic way is not the way to go? I will have to see what see what she has to say. I am wondering to myself because MS is such a mysterious disease, there really is nothing anybody can do. Everyone suffers their own hell, their own pain. We just have to decide if we want the MS to control our life. I for one do not want to do that. MS is not going to control my life, I will not succumb to it. I need to stay strong mentally and physically so that I can do all the things I want to do.

I am leaving my blog today with this comment

Be Strong!

Have you ever wondered if things that happen in your life can trigger MS attacks? I happen to think so. I think that when things that are going on at work, home or even personally can trigger major attacks. What I mean by attacks to me are things like — I am so tired, I cannot do anything – all I want to do is sleep. My body hurts – tingles more – my legs tingle all the time now. Sometimes my hands do it too. So, what does this all  mean? I have no clue. Could be stress-related, could be MS related, could be diabetes related. I become so frustrated because when I go to the doctor, they cannot really pinpoint what it is that is causing these things. Often, I leave my physician’s office very frustrated and land up calling my doctor names like Dr. Idiot, ass-wipe and you have a degree and you were no help! Another annoying frustrating thing is people tell me you should go to the doctor and get some medicine, what medicine!?!? There is no medicine to take to make this go away!! Argh! I don’t know what is more frustrating to me is when people – yes I know they mean well, but – shut up! If you don’t know – don’t say anything. It is so much better that way.

Yesterday was a prime example – of is it the MS or is it because of something else. However, I did have a bad breakfast the day before that caused me to become ill. But after becoming violently ill, my body began to hurt. So was the getting sick over bad food the cause of my body becoming increasingly in pain? Now it is 6:03 am this morning – my arms and legs still hurt. Interesting. So is there a theory to all of this, I don’t think so, I think that I will always have these questions that people who have MS ask me. People always ask me, yes I have MS, my doctor did not tell me much, I had to do research and gather literature to find out what MS is, what I am going to go through etc. Then those that talk to me because they have MS too often say, but you have it, and it is so much better that I read or talk to someone who actually has the disease.  

Sometimes I experience other things like when I am reading for a while and look up from a book, I become dizzy. Is it because I had my head bent a certain way that caused my body to react a different way? Other things will be like I need to climb on a chair to get something from the top shelf. Once I’m up there, how do I get back down – my body has frozen and cannot move – so…… is it the MS balance thing that is causing me to be frozen standing on a chair for a few minutes willing my body to step down carefully? One time I was waking up from sleeping a full 6 hours with no wakeys – I had to lay in bed for a few minutes because I wasn’t sure I could get up. Is it because I was not moving for a long time my body decides to be log and cannot move but have to roll out of bed to try and move towards the bathroom? When I ask my doctor these things – he says I don’t know, maybe. Hence, Dr. Idiot – another useless thing he says to me.

Anyway – enough thinking things to death sometimes – and focus on the here and now. Today is a new day. I am feeling so much better than yesterday minus the stupid tingling and buzzing my body goes through. I am traveling today so hopefully I will enjoy my day.

Be confident!

I am so impatient! It has been almost a month now and I still do not feel like myself. I still feel tired and my  hands and feet are numb. I have the tingling all over. Very nerve-wracking. I think my fingers are hitting the keys on my keyboard and lo and behold nothing is coming out. Which means my touch sensation is low. I have to tell myself to press the keys harder so that the letters type out on the screen. What does this mean?

Could this mean I have to really monitor myself for the next few weeks just to see if there is any changes? Every day I have to put a huge smile on my face, listen to other people complain about their problems. God! I have to stop comparing myself to the people who think that because they havent gotten their daily dose of coffee that morning their world has completely stopped! Come on people – I would gladly trade you any day. You take this body the pain, the stiffness, the joints locking up, the throbbing tingly shocks that shoot through your body for no reason and I will just take the no coffee for the day problem. Deal?

I love the one where the electric shock shoots down my legs and they jerk for no reason. Wakes me up from a sound sleep. I want to punch someone!

Ok, enough griping. Get with the program Pam. Be strong,  Be an inspiration,  Be pain-free, Be free!