Category: PAIN

Health · Multiple Sclerosis · PAIN · Ramblings

Headaches and Spasms and Pain…Oh My!

Tracy8 Comments

Three day headaches does not a happy Tracy make!!

It is like water torture; constant pain, split second relief, you smile and bam it comes back. Then due to lying down for the past couple of days, my lower back is on fire, and that makes my legs spasm. Happy, happy, joy, joy!! My whole body feels weak and my parts will not work they way they need to.I’m drained an my body feels ‘floaty’. Rog said, ‘that’s cool'[gotta love him]. hmmmm No babe, not so much.  😦

I called my neuro as I am hoping he will prescribe me something for the pain[s]. My pain med. is not working [figures], all it does is take the edge off. Not acceptable. 😛

So just a quickie! lol Off to lie back down.

Blessings and Hope

Multiple Sclerosis · PAIN

In Dreams – Falling / Doctors

Tracy3 Comments

She is falling, her dress flies all around her, she sees no end, not stopping, no slowing down. Visions pass by her eyes as if she is seeing her life all around her. Pictures in her mind of days long ago. Smiles, laughter, anguish, fear, so many feelings. Faces she remembers, faces that have no meaning. Are they of people to come or of those from a past time? Falling still, has time stopped or just slowed down to let her see. She reaches out to certain pictures, places she wants time to stop and bring back to her. The dress tickles at her face as it flows around her. She cannot help but laugh.

Faster, faster she falls. It is much to dark here. Fear hits, she can feel the blood flowing through her veins. No more laughter, she wants to stop falling. She cries out, no one hears, no one is there. The faces she sees flying by her are no longer smiling. They’re distorted, angry, scared. She closes her eyes, no longer wanting to see. Two words go over and over in her mind… ‘Save me!’

© 01/16/2010

**********

I went to my neurologist yesterday. Every time I go, I think part of me feels that this time will be it. There will be a new medication, a cure. See, sometimes I do think positive thoughts. 🙂 But, alas, not. I am falling more on my 18.2 foot trek to the potty with my walker. I spoke to him regarding a medication I have been reading about, Low Dose Naltrexone [LDN]. It is a medication used for drug overdoses, addicts, etc. in high doses to help the addiction or jump start the heart from od’ing. In small doses [1.5mg – 5mg] it has been found to help the sxs of MS, Fibro, and other autoimmune disorders. It brings the endorphin levels back to normal which help the immune system to recover and do what it is supposed to do. It is not a cure, nor does it reverse the damage already done by these disorders. But, It has been found to slow or in some cases stop the progression of the disease.

I printed out all the info I found and gave it to my Neuro. It is not widely used in the US as of yet. He is going to do some research into this, contact a highly regarded pharmacy, and hopefully get me started on it at a low dose to see if it helps me in any way. Since our insurance has changed [shitty blue cross] and we have to pay almost 3500.00 out of pocket until full coverage, we have to be careful what I try. He offered me a clinical trial for Tysabri, but that medication still is not my drug of choice. And the side effects scare the crap out of me. So, we will see what we can do about the LDN and take it from there.

I do not expect any miracles…but it could happen!

Thanks to Kathy for the heads up on this medication [LDN].

Blessing and Hope!

Health · Multiple Sclerosis · PAIN · Ramblings · Sarcasm

Talking Positive…

Tracy21 Comments

Now, while I know a positive attitude is ‘healthy’ that does not mean I have to be positive all the time. My friend Vicki pointed me to fabulous blog;
http://www.guardian.co.uk/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich

Lines like ‘enough of all this positive shit – let us just adjust and rage and kick ass if we want’, had me peeing myself…literally!

I am so happy for people that can be honestly positive and happy. I think it’s awesome. I was there once. But, sometimes in life, shit happens and sometimes it’s not positive. I’m positive I have primary progressive MS. I’m positive it helped to cause my degenerative disc dis-order, fatigue, incontinence, tremors, spiders [feeling like something is crawling all over me], migraines, depression, eye problems, constant  numbness, oh and the little issue of no longer being able to walk. So I’m positively pissed off and angry. Is that really so very terrible?

Just because I am not always positive does not mean I’m not happy. Does not mean good things don’t happen to me. I am happy, most days, and good things do happen to me.

But when well meaning [idiots] tell me maybe if I was more positive I could heal my body. Really??

HA!

Don’t get me wrong, most people do mean well. But some are just psycho, new age, get stung by bees, snake oil sales people. And those people can be ‘deadly’ to someone with a true illness. People told my friend Vicki to drink her own urine for her cancer! WTF is that about. My sister had stage 3 breast cancer, if she had listened to these morons, she would not be here right now. We all know and hear that many hardcore medications are poison, but it saved my sister. She is in her 6th year of remission. Drinking urine would have killed her. She is an R.N. and knew what she had to do to survive, like Vicki. I’m very glad they did, and they are still here!

Others told my friend Carol maybe her cancer came because her faith was not right/good. WOW!! I was told the same things. Or like the moronic book, The Secret, I intended it. Really??! And people believe this shite? I’m thinking they must not be the brightest stars in the sky! I’m POSITIVE they have mental illness! There, some positivity for you! 😛

I’ll get off my positive soap box, for now.

Blessings and Hope!

Health · Multiple Sclerosis · PAIN

Living with MS – Newly Diagnosed

Tracy8 Comments

SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛

I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.

I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.

We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.

My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.

What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.

For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!

You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.

I wish you…

Blessings and Hope…

My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.

PAIN · Ramblings

What’s the point?

Tracy10 Comments

I was talking to my MS counselor yesterday. I was telling her how I feel nothing. Some days I get up and think, ‘What’s the point?’ I wonder why I even bother getting out of bed. Sometimes I don’t. I really hate this feeling. It’s not about poor me, or feel bad for me, it’s just my state of mind. I’m sure with or without a chronic illness some feel this way. Is it depression? Maybe. Is it the time of the year? Maybe. Is it personal issues? Maybe. Is it all of those rolled up into one? Probably. So how do we get through it?

It is very hard, for me, to ask for help. Help of any kind. I’m the type that wants to fix everything. Help [or try to] everyone. It keeps my mind off of me and my issues. It is much easier listening to other people’s issues than talking about my own. Even when I do find someone who wants to listen. Even then I try to make fun of my MS, my falls, my issues with it. When in all actuality, it’s not funny. But laughing at it is what gets me through the hard times. After my last fall, I have been thinking a lot about safety. I am alone much of the time.  And the fear of falling is what keeps me secure in my room all day. I’m too paranoid to venture to far from the safety of my bed. I do keep the phone with me even when I do the walker trip to the potty. I always laugh and think what good the phone will do me if I am unconscious. 😛

So, I am a hermit in my own home, my bedroom. You can tell where I sit all day on my bed by the ‘dip’ in the mattress. 🙂  It is just ‘safer’ for me right now. So, that is why i wonder, ‘What’s the point?’ Why bother waking up at all to just sit in the same spot all day. I know I could get up, and do something, anything. But, lately it is just easier to sit in my ‘dip’ and medicate!

So, will someone please tell me, what’s the point? P lease none of the, ‘well you’re alive’ or ‘it could be worse’. You see, it IS going to get  worse. Just not sure how quickly it will come…

Blessings and hope!

Health · PAIN · Ramblings · Sarcasm

Lost…

Tracy3 Comments

I cannot seem to find myself anymore. I feel so lost lately. People think I am all together most days, and most days I try to be. It gets so hard keeping that mask on but most do not want the ‘real’ me. I am sooooo friggen angry and pissed off at this fucking disease. I’m primary progressive and the realization of it just hit me. I am going to get worse. So please do not tell me anymore it could be worse!! It is! I hate feeling like this. I’m not a quitter, not a poor me pour me drink kind of girl. But lately I cannot pull those damn bootstraps back up!

I cannot seem to ‘wake’ up. I am so tired all the time. I get up, get the kids off to school and then lie back down. I want to get up, make jewelry, anything, but I have no energy for it. Just getting in my chair, bringing my computer and my things out to my table is so tiring for me. Man, call me a whaaambulance please! I get so mad when I feel this way. I hate when others whine and hate even more when I do. And here I am doing what I hate. I guess it’s better to write it out here than whine to my family. They have to deal with enough already.

I see all these ‘self help’ articles, books, BS!! They make me crazy. They all say the same damn thing. Be good to yourself, love others, love yourself, blah blah blah… No shit, common sense maybe. Look at your life, change the things that are wrong and work on yourself and your relationships. Find the root of the problem and deal with it head on. What were your dreams? Find them, go do them. WTF!! Not everyone CAN do what they intended. Sometimes life throws youobstacles. That’s when you need to change the dreams you once had. I had dreams, hopes. Now all those dreams and hopes had to change. I look all around for something else to fill those voids. But, being unable to move much hinders those as well. I WANT to work. I hate not being able to. Trying to find a legitimate work-at-home job is almost comical. If I had money up front to pay these jokers, I would not need their stoopid job. Maybe I should write a ‘self help’ book. All it takes is a bunch of BS and a cool cover to sell.

So how does one ‘deal’ and or ‘get over it’? I have heard those lame ass comments more than i can say. “Well you just have to deal with it.” or “You need to learn to get over it”. REALLY!? You get MS or any other chronic condition and you deal with it or get over it. Or, better yet, SHUT UP and do not speak! Easy peasy. Actually I do deal with it, hence my different mask for different occasions. Getting over it is a different story as daily I am reminded by the fact I cannot walk and am so fatigued I cannot get out to my front room in my own home. I am reminded daily when I try to sit up and the pain hits me like a locomotive.

I sit here in a fog, getting hard to even know what to write anymore. I lose my train of thought in a split second. I get a thought but then cannot seem to get it out on ‘paper’ in the same way I am thinking it. My cognitive issues seem to be getting worse, and that is the hardest part for me right now. I am a smart woman and the thought of losing my cognitive abilities scares the shite out of me, even more than incontinence at 45.

So, I just read over this and am shaking my head. Do I publish or do I delete? Do I edit or do i leave as is? Well, I publish and leave as is. These are my feelings right now and this is a way for me to vent them out. So, you ask, how I’m feeling. I’ll tell you, I am not feeling anything…

Blessings and hope!

PAIN · Ramblings

You want real…

Tracy14 Comments

I’m pissy, bitchy, and full of negative energy today. Everything and everyone is irritating me in some way. Some, it is all them. Some , it is all me. I have no patience at all today for ignorance or even the tiniest bit of ‘stupidity’! I have so much to do it seems, but can never find the time or the energy to get it all done. I was always a ‘if it can be done then do it now’ kind of girl. So, now not being able to just do it anymore highly irritates me. I look at those around me and wonder why they cannot just get up and get it done. If I was well, I would. So, why the hell don’t they??

I look at my house and cry. It is not my house!! My house would be clean, all the time. Dusted, vacuumed etc. Now, it is not that way. It’s tidy, but not spit spot clean like I always did it. My yard is awful, grass dead and not many flowers or nice landscape. If I was well it would be amazing like it was at my old house before I got sick. My kids do more than most kids and my hubby is always doing something. But, I still get so angry that they cannot just do the things that need to get done. The things that look like crap around my home. I know that it is my issue, my problem if you will. I am pissed off and mad at myself for not being able to do the things myself. Sadly, I project it on to those around me. I know it is wrong to do so, but it hurts too damn much to know it is my fault it is not getting done. The fucking disease that has taken me from me and from my family and is continuing to take. The greedy MonSter that wants my soul.

Every day it steals more of my life from me. DON’T tell me it could be worse!! It is going to get worse. It’s progressive and I am sick to death of people saying such an asinine thing to someone with a chronic [any] chronic disease. Until you walk, err roll a mile in my chair then please just shut up!!! This is ‘my’ worse. When you make such a hurtful statement like that to someone you downplay their pain. If you have a cold, allergies etc then yes, quit whining as it could be worse and your problem is going to go away. Chronic illness’ do not go away. And most times they progress for the person. So, until you have a clue of what you speak…do not speak!!

This has been eating me up for so many years. I had someone tell me once that it was all in my head. [a relative, not on my side] For once, she was right, well sort of. It is actually on the nerves on my brain and spine, but some are in my ‘head’. If I was the type to put my family on egg shells, I probably would have punched her in the mouth. But, you can’t help ignorance I guess. So I just kind of laughed and looked away. It took all my energy not to scream!

Every day I feel bad. Every day I have fatigue. Every day I have anxiety. Every day I get weaker. Every day I cannot walk. Every day I have pain. Every day I cry. Then…I get up, I put on my mask for those around me, I smile through my pain, I laugh at my shakes, I make jokes about my incontinence, I lend an ear to anyone who needs, I am strong for my kids, I tell my husband I’m ok. Then when the night-time comes, I sit in the silence, the only light from my bff, my Mac. I cry in silence for what has been lost, I cry in silence for the wife and mommy that has slowly been taken from my family, I cry for what is yet to come…I cry.

Blessings and Hope