Brief Relief

I haven't posted lately.
 
It seems that with recent changes in my life came a bit of unforeseen drama to the twelfth hour. Its almost water under the bridge now, but the impact of stress in my life does a whopper on my system. I've been in a lot of pain, mainly from tension.

Also, my lack of reflexes on acknowledgement of "HOT" items such as the stove (ouch) and an iron ( yikes ) has lifted me from cooking and ironing. The wounds from the iron are healing, however my brain seems to think its more than a simple wound and has my entire left arm from fingertip to neck locking up, having spasms, sharp pains, knots, and more.

Thankfully the family has been helping me by giving me massages, but honestly my caretaker (hubby) is getting worn down. Its not easy keeping me comfortable. With him working full time now and having to see about me in his off hours and throughout the day (phone and text)...

We've been trying something new; there's a new family member that also acts as caretaker here things are working out well (extended family). We all take care of each other. that's the best thing about family. it took me awhile to trust her because my husband is all I knew in terms of someone that actually cares about me enough to put my health first, but she is wonderful. she helps prepare my meals is she really helps with the kids and we help with her child as well...it really is a really good family situation and I'm happy. 

I'm hoping to begin writing again I'm using a voice app that helps me relay my thoughts into text so that's good. https://dictation.io/ I've been writing this one since May 12th, 2014 so I guess is about time to go ahead and publish and then I'll try to be more forthcoming with my posts since I do have this voice app. I love all of you very much for tuning into my blog and for following my progress and hopefully we'll find a cure for MS one day soon. 

Peace

Please donate to my fundraiser.  Thanks!

http://www.gofundme.com/write-4msawareness

Temper Surrender

I've become aware of the "temper" problem that I have.  Something comes over me...like a rage...and it's hard to "turn down".  It's sad, truly...when  I surrender to my temper.  GOD help those who are the subject of my wrath, especially if they are the direct cause.  I'm working on this because it's really a problem.

I'd love to blame this, too, on one of my ex's, but I can't, lol.  MS patients, unfortunately, suffer from emotional liability or mood swings.

Emotional lability

Emotional lability or “moodiness” may affect persons with MS and is manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. It is unclear if the emotional lability observed in MS stems from the distress related to the disease or if it is caused by some changes in the brain. Whatever the cause, emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family. Severe mood swings respond well to low doses of the anticonvulsant medication valproic acid (Depakote®).

So what's the solution?  My doctors have prescribed me meds a series of what I fondly call my "don't go off" meds. I'm not happy about this at all.  I'm not happy about getting so outraged and enraged. GOD teaches us to be kind to each other and to be cheerful. All of that busts out into one big FAIL when it comes to my annoyance with others. Sometimes I even cringe with some people talk...the voice annoys me. Or how about the friend that THINKS they know what you are going to say, but in fact what they DO say has NOTHING to do with what was actually going to be said? These things and so much more just set me off.

I'm praying about this. Being so angry does not help. I'd love for this aspect in my life to change for the better.

MS has not only changed me physically, but emotionally as well.  Please donate and allow me to spread more MS awareness. http://www.gofundme.com/write-4msawareness

Motherhood

I dont know why this MS Monster has taken control over so much in my life. One of the biggest joys of my life is constantly being challenged... Motherhood.

  I'm a great mother. I've raised three children since diagnosed in 2004. Back then they were 2, 7, and 12 years of age. Fast forward the 22 year old is gone and "angry" because I can "do for him" like other parents can in terms of giving him free room and board and bitter because he had to help take care of the little ones because I got sick. The now 17 year old frankly is my biggest sympathizer but is also super ready to go to college and be on his own. He says he has always been under "us", and now he needs to "fly away and leave the nest".  That's making me sooooo sad, seriously.  My now 12 year old struggles with ADHD and her birth father constantly makes it known to me and to her that she should go live with him. He's unsympathetic to MS and to ADHD, and he makes me struggle to take care of her on my fixed income.  He won't pay his child support the way he should, so that makes it harder on me.  He wants me to get a job, but I am 100% disabled and each time I've tried my hand at the "work force", I've been sent to my bed in relapse. Seemingly I can only "work" for myself because at least I know my limitations.   So I struggle with what I have.   Because he has more money than I do, sometimes she wishes to go to him. Because I enforce rules that he does not, she wants to go live with him.  

This is nothing different than any other parent who is dealing with co-parenting issues.  Whenever parents are not together, there is a chance that children will try to turn one parent against the other.  

 

Being a mother living with MS isn't easy.  Please donate to my cause http://www.gofundme.com/write-4msawareness 

Type-ooooooooooooooooooooo

I'm tired of making typos.  In 1997 I tested at 98wpm .  A year later I was at 124wpm.  The following year I scored at 136wpm.  Now...2015...my left hand is bothering me and i'm in typo hell trying to get by on the keyboard.  It's sad, limitations.  It takes forever to type and i'm like..... "this is not me"/.

But it is me.  It's ME, limitations and all.  It's me that has to type with two fingers or a pen if I can.  It's annoying.  It makes me sad.  It takes me all day to write one paper.  I can barely read my own handwriting.  This sucks.

I first noticed my left hand acting up while testing.  Then it was confirmed when I tried to type on my laptop.  I cried as I had to grammar/spell check the hundreds of red lines on my paper.  I'm looking for a talk to text app to assist me.  But this is hard and it saddens me.

Please donate and help me fund some of the things being on disability won't allow me to do. I really feel like massage therapy can help loosen up these tight muscles and damaged nerves.  Please help http://www.gofundme.com/write-4msawareness

Co Caretaker Needed

Its hard being independent when you have to be dependent on others. I need help with these little things like paperwork but here I am, trying to do it all on my own from transportation to calling the offices for additional info or deadlines. I need someone else besides me to set appointments that i need. I need for someone to pack my bag for my next outing. These little things can be too overwhelming for me, I see.  I need an assistant caregiver  ASAP who can feasibly help me. It's hard to verbalize that. People are used to me doing that for myself but it's hard.

For someone like me, this was never an easy thing to admit to. My mind is often lost, in a constant state of fog. I speak intelligent and am wise, but with things that are.... well some things just don't come to me like they should it would so I need help.

One of my fellow MS'ers said that I needed to tell someone that I needed help. "You need to ask someone. I know it's hard to admit you can't do everything yourself anymore, but please do."  I told her, " I do but this is super difficult. I feel like if I'm getting help I still expect it to be done right and constant. It's hard reminding someone to remind me to take my meds, Lol. I have four bottles of vitamins so I won't run out and I still forget to take them everyday and Nobody is  reminding me, either, even though I asked them to. Of course I've forgotten about it and I've forgotten that I had asked someone else to remind me,Lol. I really feel lost, but I can laugh about it because at least I'm loved. I'm settling for less than the best care, I know. That's why admit i need HELP.  I'm gonna keep admitting it until someone listens or reads". 

Another fellow ms'er said " You have made the first step with the feeling of helplessness.  I trust  there is someone out there that will help. ", and as she closed her message to me she added that I was  "totally amazing". I thanked her and replied, "You know what? I'm sure of that. I know GOD didn't leave me here to do this all alone and I know he will send someone to help us all here in my family, not just me but my caregivers that I do have by way of family. I do have a lot of help but I know since more is needed, more will come." I  thanked her  so much for responding to my post...and told her that she was  totally amazing too.

I called social security administration today to get an extension on the forms they requested be completed in ten days, which is Sunday, and I couldn't reach them at all besides a voicemail left on my agents co-worker's voicemail,  as she was filling in first my agent. The woman I initially spoke with told me that because I was dealing with a federal agency I would always have to fill out forms and that's when I knew I'd need a caretaker for this. How am I even able to fill these things out? I can barely write long-hand. I survive...don't ask me how I do aside of by God's grace. I'm going time started putting BY GOD'S GRACE on all of the answer spaces because it's the truth. Can you feed yourself? BY GOD'S GRACE. What's your day look like. Everyday: I'M HERE BY GOD'S GRACE. That's how I feel! There were moments I could not even Walk, see, or speak and now everything bothers me and I live in constant pain. Rushing me to do paperwork is not going to help me at all aside of it will help me have a chance for continued benefits that I worked for. I can't remember a lot of my life and though I don't want to admit it, this is my reality.

Please donate http://www.gofundme.com/write-4msawareness

What hurts the soul

I'm on edge. I've taken and witnessed too many losses this month alone all on top of each other...I'm trying to feel safe from unexpected stuff, because Lord knows my shock meter is on high. 

People promise they will always be there, but death cannot be avoided. But then, neither can life once activated. And in life we make choices.

Forgiveness is essential,  and even in my most anxious moments I have grasped wisdom. God's eternal love endures, as always .. To some, I don't even know what to say, having become speechless....to the English language at least.

I'm trying to get through so many things all at once. And my thoughts won't escape me because I'm in too much physical pain to even begin to clear my mind. Or my heart. I want to get this out, what hurts the soul.

"Dear mom,
  I may not  have always liked you but I loved you, and I never would have left you. You may not have not  always liked me, but even though you loved me, you left. One time voluntarily and once when God called you home. I probably won't get over my abandonment issues until we meet again.
Attica"

 

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Getting over it

Lately my tolerance level is bad. Little things trigger me into feeling sad or hostile or despair,etc. It's one thing to have racing thoughts, and another to have utter annoyances that darn near drive me  nuts. I'm trying to practice "getting over it" but in all honesty I'm getting fed up.

Like, one day I was playing a game. Someone wanted to play my hand so i said "sure". They scored lower for me then higher for someone else and I got sad and hurt I now get sad super quick or mad or scared or nervous.  I also have PTSD.  Anyway, because I could have played my own hand and got a better score, it actually hurt . I felt like I was wronged,  not on purpose but definitely directed in the wrong way. . Like normal and I noticed the scoring system.  It went all bad when my scores weren't what I wanted them to be, we played as a team. I feel "spoiled" because I get ready to throw a temper tantrum....not outloud but inside of my head. I have no patience for my friends. I really want time alone away from everyone because people can't help but to piss me off. Every little thing requires me practice "getting over it". My thing is, lets deal with it. Everyone says MS patients over-react but i think we react as we should and if anything we have to turn down and tell people what's really going on. Oh, and there is Xanax to save the day.....and I hate meds. But That's what people push us towards. "DID YOU TAKE YOUR MEDS", they ask. I want to reply "Yes, thank-you. Did you take Your meds?" But sadly most are not on meds, just overly judgmental.

MS has me super sensitive.  And people get mad when I'm sensitive so I'm learning to keep quiet and just let it drive me crazy inside of my head. 

Such is life of a MS-er

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