Visiting Friends

It's been awhile since I've blogged...again, lol.  It takes a lot to come to grip with my thoughts and to then actually have the ...will power...to blog.  I have so much that I go through and so much to say but I don't always have the sense to write it down.  It's sad, really, how long it takes me to do tasks.  Along with MS, I suppose I have ADHD.  It's a process.

I'm homeschooling my youngest birth daughter, whom I fondly call "Da Princess".  She's twelve years old.  She has ADHD, and I don't get a lot of support for her outside of our home.  She's been struggling in school for years now; being bullied, not being able to concentrate/focus, not being able to understand things the same way everyone else does, etc.  I can completely relate to her, being someone who lives with ADHD (thanks to the ol' MS " monster). She and I love the time we are able to spend together. She was only two years old when I was diagnosed.

I've also had to cross additional health issues.  GOD won't give you more than you can bare, but we each have our OWN crosses to carry.  I became an ordained minister so that I can marry others and hopefully help "keep" joy in their lives. So much has happened, and thankfully not all bad.  Just trying to play catch up, friends.

I'll try to share more of my story.  I'm still fundraising for my cause and to spread more MS Awareness.

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

Stuck Like Chuck

I've experienced more cognitive issues in the last past years since 2013.  Different patients have different issues when it comes to cognitive issues. For me, I'm currently having difficulty with planning and problem-solving and tending to become overwhelmed and inflexible when a task is too complex. I don't have it in me to have flexibility to generate alternative solutions. I'm in a horrible and confusing "MS FOG". 

I'm glad that at an early age of five, I was tested with a high IQ of 142. Yes....me.  I suppose that’s why going through this isn't as hard because I understand fully what’s going on, even in my hazed mind. Some MS'ers are unaware of their difficulties and have problems monitoring their own behavior. Not me: as soon as I notice it I put my support system on full alert to know what’s going on and to stand in for me. Comprehension of the impact of their behavior on others may also be overlooked by some; by me I know it is hard on my tribe and my business family, but we are in this together.

I am a bit tired of having brilliant ideas that I can't execute. I need more assistants and interns to train in these life skills and wisdom/knowledge I want to pass down. It's hard because I do need a team to get things done for me. I want to do so much but can only do so much. I thank God that I'm able to be a mother to my children and be able to raise them in a multi parent household as opposed to a single parent one. In my family,  we are here together for life....life partners... a tribe dedicated to raising our young in the best environment ever. We are homeschooling, and despite my cognitive issues, I'm still able to contribute greatly to my children's education.  I've created a team that helps with academics. And I concentrated on their enrichment and cultural studies. With home figured out, I still need help with other things...living assistance. Like for instance I'm in a fog when planning meals, and that sucks because I have to waiting first others to prepare my meals.  I get ready time send off an email and it might take me all day or days even to get that done because I get "stuck".  As powerful as I am I feel helpless in my mind at times.  Even with this post, it's day three in the drafts.

 

I won't complain. I'm quite intelligent so when I'm in a fog relapse, I just take it as a vacation.  Playing gtaonline  ps3 is a great help and being a minister and volunteer life coach is easy for me to do...second nature even in the fog.    I can't let this MS beat me and fog or not, that high IQ is still there somewhere in the damaged myelin covering of my mind; just being utilized in a different way.  

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

Typing with one hand and being super mommy

My left side is getting worst with my motor skills.  At this point it hurts to type with it.  I definitely need speech software but i'm afraid that if my speech slurs I won't be recognizable. These are today's stressors....well, some of them.

  I need people to know how to work with me.  From what I gather, it's best to let me talk and then for the person to do.  <sigh>...easier said than done. Its the "doing" that is becoming more and more challenging. The "doing" takes strength and eill power that I dont always have.

Having an invisible disease means you get invisible assistance, lol.  Meaning nobody is going to do for you what they believe you can do for yourself. It's hard to hear "You're just making it up in your head".  It would be different if I had a hired assistant that would just do these things for me because they were paid to do it. But sadly i'm one of the low income individuals that cannot affored hired help. And that's why I get sad.

I have had no sleep, really.  My body feels drained.  Nobody monitors my rest so I am trying to do so.  If I had a paid assistant they could monitor how much ( or how little ) I rest, especially sonce I have insomnia. My son takes meds every 4 hours and I'm the one to administer it to him.  He had surgery (a tonsillectomy) The other day, and so you can imagine his pain.  And because it's pain meds, I'm careful to be the only one giving it to him.  I'm his mother.  This is what mother's do.  My husband and girlfriend open the top of the child-proof bottles for me, but I do the rest.  That's a lot for me. And my son reminds me when I forget, especially when he's hurting again, so we are working together. I didn't realize how much pressure this is for me. My son helps me take care of him because thats how my children have always been since MS came into our lives, but with a little funding I could get someone to help me take care of me, too. http://www.gofundme.com/write-4msawareness

Despite the motor skills challenges, I carry on. I'm typing this with my right hand only when typing with the left hurts too much. I think once my stress goes, my motor skills will return.

Meds

I'm thinking about all the meds I've been on.  though i've been living with MS nearly prescription free, there are still some pills I could do without.  The Zanex and the Loratab for one.  I know I complain a lot, but I'm just trying to be more voiceful while I can.

These are loretabs and zanex. I'm prescribed each of them three times per day. Just with those two alone, what kind of quality of life us this?

I'm raising funding so I can have my life back.  I talk about this so you can see my pain.  I find that with the right diet, with massage therapy, with the right environment, and with natural and organic alternatives I CAN TAKE LESS MEDS AND GET BETTER.

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

What Does It Look Like

I hear a lot of MS patients saying that they are tired of hearing such phrases as “but you don’t look sick” or “just take a nap and you will feel better”?  I'm tired of it, too.  I am sick and taking a nap may or not make me feel better, but I will still have MS either way.  Even if I do take a nap, I'm going to wake up and be tired all over again.  It can be hard to find people to talk to that truly know how I am feeling and when they say “I get it”, to know that really do. 

But I am not alone. There are thousands of others who are feeling, struggling, warring with all the same things I am going through.  I'm just weirded out by this "invisible" disease.

I say "invisible" because for the life of me, I can't find an accurate picture of what MS looks like (aside from the MRI readings).  What does "I'm tired and do not feel like moving and have no motivation to even go downstairs" look like?  If it looks like lazy, then you're looking at it wrong because in my mind, I'm accomplishing all kinds of things. 

I've seen on a MS blog "Having an invisible chronic illness  can leave you feeling adrift in a turbulent sea of confusing emotions. Anger, sadness, fear, anxiety and hopelessness can all vie for a front row seat in your daily struggle to live a happy, productive life.".  I agree.  But at least writing about it begins to shed some light into my world.

I honestly think stress is what is causing me to not be able to fully snap back into "life" as I normally would. I have spurts of energy when I will walk from room to room in the house and be a part of things (I cooked grits and fist today), but hours later I will just want to relax.  It's good that my family is always nearby.  

In researching, I've found that exercise is helpful.  I used to walk a lot and have not been doing so.  It's good to have a walking buddy to ensure that you are safe and do not fall, if you are having symptoms.  Also, diet can make you feel better; vegetables, fruits, water, fish, nuts, etc.  

I'll need massage therapy.  With exercise, there is more pain.  But I know GOD willing, help will come soon. 

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

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