June Gives Me Love Once Again

It's been a long time since I've been super happy, but I AM.  After so much that we've had to endure in this relocation to Colorado, we finally see the silver lining.  We have a new apartment as of June 10th; a new home.  June has always been a special month for us, for it's when we officially eloped to be wed. June 29th to be exact, so we're right on time, I think.

 We are incredibly thankful to GOD, so very grateful.  Along the way there were those who prayed for us, and those who pitched in to assist.  Living in poverty is the reality for so many chronically ill patients, and in my situation where my spouse is also my caretaker, we've not been excluded from that group of patients.  Being on my own since the age of 16 has been a true journey in itself, but now that I Am someone living with multiple sclerosis and PTSD along with a host of mental and physical conditions  including chronic pain, it's become more difficult. 

There are a lot of other things we needed aside of housing.  Housing will allow us to spend time with our children, for sure, because we have a place for them to come "home" to.  I love "home".  Home is where you make it, for sure, but being in a comfortable and conducive situation is the recipe for a happy home.  I'm striving for that. We came out here with nothing, so once again I'm having to start over.  We need a bed, a sofa, kitchen utensils/accessories, etc.  My husband is working long hours to help provide our needs, but since he's my only caregiver he is limited on what he can do and how much he can do it because he pretty much takes me wherever he goes to ensure my safety.  Until we get "there" financially, it's a struggle. But the best part is not once did he give up on me.  If he did, i'd surely be devastated and I have no idea what that relapse would entail, so I keep prayer in my marriage and in my family life. 

Joy Boy Promotions, Sir Joel Cooper, Binns Al Ndee Al Apache Tribe, and Venita Gaines pitched in first.  Then came Anthony Stuart, Broadway Smoke Shop, Teldren Young, Shanda Howard, Bernice Gardenhire, Victorious Personal and Professional Empowerment Coalition, Wayne Hobbs, and Smoketown Knave.  Most recently Genevvive Toland and Eden Lorvil have pitched in as well. 

Pitching in means assisting me in being able to LIVE with Multiple Sclerosis.  I'm 100% disabled, and now I totally get that. As much as I try to thrive in life, the disability does indeed hinder me.  COmpleting projects has been really hard, but with the assistance of my team it can happen (however i'm rebuilding my team after taking a really bad setback from betrayal).  I feel better with massage therapy to relieve my chronic pain, but again it's too difficult due to cost.  Everything costs.  Everything I need costs.  Things that I don't need due to the dangerous aftermath is pretty much free due to insurance smh.  I wish those things came with life insurance policies smh. So I ask for assistance via donations and my team (those I do have in my corner) and I will help give them exposure/promotions/advertising if they need it. I'm not asking for handouts,just sincere donations with or without expectations. 

This new apartment is the start for a happier life for me. I hope that my husband continues to work hard for his family and I hope people will care enough to help me by donating.  I hope to see ALL my children next month and if not SOME. I hope that my pain will subside (thanks to hubby for picking me up some Aporthcanna relieving body cream from Life Flower Dispensary).  I hope I'll get better.  I hope this touches someone who doesn't have a home to know that prayer and hard work works and sometimes people do pitch in to help us succeed. I hope others will see the light in me and continue to donate so that my light will not dim.  I have faith in all of this.  Now faith is confidence in what we hope for and assurance about what we do not see. 

Hiccups

I haven't been writing as much as I planned to. Depression and anxiety disrupted my peace of mind.

After I got my daughter situated, my son who is attending freshman semester of college ran into some snags. He needed a laptop. He needed parking for school. He needed food money. On an income that's as low as mine, its been hard to manage but doable... Until now.

So I'm all the way out here in Colorado and my kids are all the way in Georgia and where I am in Bennett, Colorado is nowhere near any possible jobs or public transportation. After a lot of issues here, we are moving closer to Denver and then maybe we can progress more to the point where not only am I healthy but we can help more financially with our children.

Multiple Sclerosis patients go through a lot, as do PTSD patients. Having both of those along with other psychological issues stemming from those is so hard to manage in a stressful environment. Unfortunately, living with others who don't understand that has been toxic to my recovery.  Caring for someone with multiple sclerosis (MS) involves unique stresses and uncertainties. The disease is unpredictable. Caregivers may not know from one week to the next how MS will affect the patient. The patient may experience dramatic mood swings. They may also confront new physical challenges that could require changes to their environment. My main symptom has been severe anxiety. Most anxiety is not caused by medical problems. Anxiety is a mental health disease, and it's often created through a combination of life experiences, coping ability, and genetics. But in some cases anxiety can be caused by something physically wrong, and one example of such an issue is multiple sclerosis.

Multiple sclerosis, or MS, is a terrifying disease. While generally rare (1 in every 1,000 women, and 1 in every 3,000 men), the illness can cause a host of physical problems, and unfortunately anxiety is one of them. I go around others and smile and small talk then as soon as I can I escape back to safety in my room.

One of the best first steps as a caregiver is staying calm and assessing what you need to support your loved one. I needed more isolation away from others in our room so he did what was needed. (Sigh) But the things I have learned and experienced have been beneficial to my recovery as well.

During the time when things started looking south, a group of women that I befriended, began bonding with, and began gifting free counciling with online began to form sisterhood with me. They helped me get through some tough times and are still with me.  Jesus (my husband Rafael) spends 24 hours a day with me since our co-partner left, but lately he's had a little break somewhat so he can get some of our business done because they have been keeping me company and calm. By allowing me to help them, I'm able to distract myself from my own stressors. Things had been getting bad. Raf's car accident (when he got hit twice back to back on purpose with the car that his ex friend "B" was driving) began making his body hurt when he did work around the Bennett house which made him not be able to do as much for the house as planned before, which was part of our agreement for staying here, so it became one of the problems at the house anyway. People acted like he was lazy, but really his body hurt and he doesn't have insurance and his main priority is me, and nobody else here cares about his health but me.  We paid our rent, deposits, utilities, gas money, and labor to work off some of the tincture and phoenix tears oil for my treatment and gave it a try but clearly it wasn't working out. There's a lot more to it, but basically it began to come to a head because  On 9/12/15 the other male tenant came and asked me if my husband could pull some weeds out back since they were having a cookout. It was Auset day (Saturday) so i told him we couldn't because we had made plans already. Well, bad news came on our phone from our family and I'd sent off a text message about a death in our family and I also had tremors and we couldn't make it to the cookout to our landlord  but got no response, on 9/14/15 there was attitude towards Raf, and our landlord requested a private meeting with him which we declined because she seemed hostile and actually told me that what she had to say to him she didn't want me to hear because it wasn't nice.... and 9/15/15 we got requests for the landlord to speak with my husband privately again and when we refused to do solo talks with just him and her due to the need of a witness she said if she couldn't have a private talk with him then we needed to vacate in two weeks, on that same day 9/15/15 we received notice to vacate. Its a long story leading up to that but long story short, its time to move on. 

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The last day here according to the email is 9/30/15. Funds are non existent at the moment as far as I can tell but we will find a way. Some nice sisters have pledged to help us out since this was unexpected, so I'm grateful but still a bit afraid until the funds actually arrive. So much to catch up on in future posts, I've been quiet out of fear of backlash but this is what's been going on with me.  The IRS still won't release our funds and I am just so tired of identity theft. My debit card company had to re-issue my new card because someone got it before it got to me. All these financial issues with money we have that won't be released or is somehow blocked... Gotta be a blessing around the corner somewhere, I think. Thank GOD my oldest and his girlfriend are bringing new life into the world soon. I'm so happy to be a grandmother! So with the bad, there is still light.

I've got a headache but we did stock up on food earlier when we had access to transportation so for now we are eating too.

Had I still had the children with me, we would have made different decisions but since my health is the focus and the kids are safe and sound in Georgia, we can move around more freely...so as long as they are alright I know we can make it through. This is just a little hiccup on the road to recovery, and hiccups do go away. :)

The last day here according to the email is 9/30/15. Funds are non existent at the moment as far as I can tell but we will find a way. Some nice sisters have pledged to help us out since this was unexpected, so I'm greatful but still a bit afraid until the funds actually arrive. So much to catch up on in future posts, I've been quiet out of fear of backlash but this is what's been going on with me.  The IRS still won't release our funds and I am just so tired of identity theft. My debit card company had to re-issue my new card because someone got it before it got to me. All these financial issues with money we have that won't be released or is somehow blocked... Gotta be a blessing around the corner somewhere, I think. Thank GOD my oldest and his girlfriend are bringing new life into the world soon. I'm so happy to be a grandmother! So with the bad, there is still light.

I've got a headache but we did stock up on food earlier when we had access to transportation so for now we are eating too.

Had I still had the children with me, we would have made different decisions but since my health is the focus and the kids are safe and sound in Georgia, we can move around more freely...so as long as they are alright I know we can make it through. This is just a little hiccup on the road to recovery, and hiccups do go away. :)

Water Bill.

I received a notice from social security telling me that basically I can work no more than 80 hours per month and can  only earn under a thousand dollars a month.  Trial Work Period is what it's called.

 The problem with Trial Work Period is that Multiple Sclerosis is unpredictable at best. I cannot rely on my brain and body to do what it's supposed to do when it's supposed to do it or even begin to assume how any given day will be.  I encountered many problems when I worked outside of the home with my health being unstable.  Employers do not take kindly to a lot of call outs or having to leave early.  Even if it's for doctors appointments, the attendance policy that jobs have will not allow me to keep substantial or gainful employment. Even when thinking about working 20 hours, you have to take into account that I'll need frequent breaks, and my brain and body may not be up to par.  I've found that my social issues make it nearly impossible to keep a steady job.  Even in self employment, since my fatigue and cognitive issues are present, it'll be a definite losing situation to be at a job outside of home.  The symptoms I experience with MS make it hard to even work at home.  I can't concentrate enough to get tasks completed, which is why I have assistants to lend me assistance.

  Meanwhile, bills are still due.  If I can't work then I can't eat, right?  Thankfully, I'm married and I've learned how to work with my disease. We have to budget really well to stay afloat.  I know it takes more hands than just mine to get things done.  My husband stays home with me to ensure I'm well, physically and mentally.  I've come to trust him with my life, which was always hard for me to do.  I pray for him and continuously hope that he doesn't give up on me.  There are so many MS patients that don't have the support that I have.  Even when social security is confusing me (so many notices and in reading them, I can't fully understand what they mean), he's there to keep me calm and tell me not to worry.  And that helps.

  I can't help but to worry sometimes.  I'm a disabled American who doesn't have anything any more.  I've had to start over, and that has not been easy at all.  With so much of my memory gone, I'm so thankful for those who remember and know me so that they can fill in missing pieces of my life.  I'm  honored when people think highly of me.  I've always tried to be fair.  I'm all over the place with my thoughts right now are everywhere because that's how my brain works.  And again, with my brain being all over the place, I can't work outside of the home or even in the home on something as steady as a job.  I can do projects, and I can manage them to an extent.  I thank GOD for my imagination because it's gotten me far in life.  It gets me as far as I'm willing to let it take me.  

  My message to anyone living with MS is to fight and learn and share the information. Bills are there and they are due, so  I advise anyone with MS to find deep in themselves creative skills that they may be able to be hired for, and to never give up on their dreams.  

#randomthought And honestly, we all need to pray for water; that we will stop being charged for things that GOD provided for free.  

Support MS Awareness today. 

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

Pain On Fleek 2

I'm having a rough time at 2:44am. I'm completely in pain. My fingers and palms hurt the most, then my arms up past my wrists. Then my neck. And my back. My feet hurt. My butt  cheeks are sore. My thighs burn a bit. My nose is sore. So is my elbow and hip. This is "normal". 

I'm so pissed because I had to take a pill to sleep and for pain. Tezapham.   My pain is on  fleek"  x 2! http://www.urbandictionary.com/define.php?term=fleek


I've not been on pills for some weeks because I'm trying to detox my body...lbut tonight I have no choice. I'm hurting beyond simply ignoring it. I think my stress has caught up to me so now I lay in bed suffering thinking of dying perhaps. 

 That's why I took the pill, so I won't want to die. Honestly I want to live,Lol....it's just the pain is severe. My mind is racing.

There was this Danish study of suicide among the MS community. 
" Results: In all, 115 persons (63 men, 52 women) had taken their own lives, whereas the expected number of suicides was 54.2 (29.1 men, 25.1 women). Thus the suicide risk among persons with multiple sclerosis was more than twice that of the general population (SMR = 2.12). The increased risk was particularly high during the first year after diagnosis (SMR = 3.15)."

 I can see that. Though I of all people will Never commit suicide (my favorite cousin broke my heart when he did), it seems a reasonable escape... to be void of this pain. 

This pain sucks. People are too sore themselves to give me the quality of life I need with massage and money is too scarce to give me the proper diet I need completely.  I'm not going to do myself in but something has to change soon. 

  Insurance won't cover massage therapy, only pills/narcotics. I am doing a fundraiser but I know that takes time because Ms is one of those invisible diseases.  I'm going to have to spread more awareness,  door to door if I have to. We need assistance but nobody wants to help. 

Prayer for me getting a cure for this MS monster. It's literally killing me.

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

Works cited
http://m.jnnp.bmj.com/content/76/10/1457.full

My BURDEN Blessing

June 2015 will make eleven years since I was diagnosed with MS. An entire decade has gone by, and I'm still living with MS.

I'd have to say the hardest parts of having MS has been the limitations of financial growth opportunities, the never-ending pain, and my relationships with others. MS has taken control of so much of my life, and yet GOD has never given up on me or left me high and dry.

Since my diagnosis, I've had some pretty lonely moments.  Its times when you are at your loneliness that GOD works the best with you. Taking my lonely times and spending them with GOD and learning who I AM in Jesus Christ has been my saving grace. I'm able to see so much clearer now that I've accepted Christ as my savior. I'm able to do much more because I can do all things in Christ that strengthens me.  

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

Dying Young

My biggest fear (and my children's, too, unfortunately) is my passing away from MS. I'd much rather it be from natural causes like old age (100 or so). When I go to lay down, I think of death and it makes me wake back up.

I love my family, friends, pets, etc. I used to not want to live, but now I have so much to live for. The anxiety that thoughts of death cause me is bad. I try to relax. I just don't want to leave anyone behind....

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

2 Feet or Bust

"It might be a good idea to back off a bit when dealing with people who suffer from anxiety, according to a new study, because the disorder seems to affect the need for more personal space surrounding the body, also called "peripersonal space."

British researchers found that people with anxiety perceive threats as closer, compared with those who are not anxious. They said their findings could be used to link defensive behavior to levels of anxiety, particularly among those with risky jobs, such as firefighters and police officers.

In conducting the study, Dr. Chiara Sambo and Dr. Giandomenico Iannetti, from University College London, recruited 15 people ranging in age from 20 to 37 and gave them a test to rate their level of anxiety in certain situations.

In addition, the researchers applied an electrical stimulus to a nerve in each participants' hand, which caused them to blink. This hand-blink reflex, which is not controlled by the brain, was monitored as the participants held their hand at four different distances from their face: ranging from about 2 inches to nearly 2 feet. By measuring the strength of their reflex, the investigators determined how dangerous the participants viewed each stimulus.

The study, published in the Aug. 27 issue of theJournal of Neuroscience, revealed that those who scored higher on the anxiety test reacted more dramatically to stimuli about 8 inches from their face compared with those who had lower anxiety scores. People who reacted strongly to the stimuli farther away were classified as having a large "defensive peripersonal space," the study authors said.

Anxious people viewed threats as closer than those who were not anxious -- even if the perceived threats actually were the same distance away, the researchers said. Although the brain does not trigger defensive reactions, the study authors said, it could control their intensity.

"This finding is the first objective measure of the size of the area surrounding the face that each individual considers at high risk, and thus wants to protect through the most effective defensive motor responses," Iannetti said in a university news release.

-- Mary Elizabeth Dallas"

The hardest part of mental disorders are the quirky ways they make us feel. I have intense anxiety when anyone leaves personal items in my room. I've been working on it - immensely - but I'm still very much triggered when it still occurs.

Honestly, nobody should be placing their personal items in my room as storage, even temporarily. Not my children, not my girls. Its important to me to be able to look around and see memor of ME. And mostly its females i have the issue with. Is it a trust of intentions issue?/Perhaps, but that's mental, right? I'm aware. I once had an IQ of enormous amounts, which is why my psych says I'm "intelligent".  But intelligence or not, it still doesn't stop

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

Misunderstandings lead to me feeling alone and misunderstood

Along with MS, I got Cognitive Dysfunction.  smh

Well, recently I got an email from a teacher and in my response,  I asked her for more clarification.  I can tell by the way that she responded she was being defensive. She doesn't know me, so I did advise her that I was an MS patient and I do learn things a little differently.  I asked her to bare with me while I asked for more clarification.  I feel like she thought I was pointing the finger at her, so I had to explain to her that all I wanted was to ensure that my child was not giving me excuses, I needed all the facts and details (because I'm not there in the classroom with him)- that is the only reason why I asked more probing questions.  I do that so I can fully comprehend, but people take it as if I'm interrogating them.  Thing is, if they are being honest, what does it matter?

I CONSTANTLY explain that I learn differently due to MS, and that I need more clarification. So this time, I was kinda hurt because the teacher didn't respond back to me.  And like most people, she may have gotten defensive.

I was told by a family member that perhaps I was the one being defensive.  I was shocked, and kind of insulted.  I mean...how can me asking questions equate to me being defensive.  Is that me being defensive or is that me seeking more clarification?  It's annoying that someone would assume that I'm defending my child when ALL I am trying to do is DISCUSS things????  True, I do defend my children a lot because I'm their mother and their protector, but obviously not ALWAYS and especially when I'm thinking my child may be not giving me all the info.

It hurts to always be misunderstood.  It hurts for others to assume what's going on without them trying to consider my side of things.  My memory is so short, and in order for me to comprehend things, it has to be drilled into my head.  I expect strangers to sometimes not understand me, but I'm trying so very hard to get my family members to understand my way of communication, too, so they won't get defensive so much and so we won't have ....misunderstandings.

I found this really great article about dealing with Cognitive Dysfunction (what I have with my MS) here http://ms.about.com/od/livingwellwithms/a/cognitive_tips.htm .
One suggestion they have is to control your environment and also control the way other's communicate with you.  I hope it helps someone else out there going through the same things.  I hurts so bad to be misunderstood, not to mention it messes with my mental.  Keep me in your prayers, please.  

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

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Gone But Not Forgotten, my furry baby Oreo Baby RIP 2001-2014

in the grass

she plays and lays and smiles

Gone but not forgotten, my dear friend furry-baby, ‪#‎oreobaby‬ passed away peacefully Monday morning, November 24, 2014. She had labored breathing the previous evening and was given her last rites by a few family members including myself)...we wished her well, sweet thing. Precious soul. Too many times she stayed by my side. I'm gonna miss her. Her life spanned 2001-2014. I know I will see my precious Oreo Baby again  Rest In Peace, my darling.. Until we meet again.

She leaves behind ‪#‎spanky‬ and ‪#‎kochecooper‬ and a host of family members and friends. Burial scheduled today.

It was so hard, Monday Novermber24, 2014. My husband was about to leave the house and Oreo Baby was on at the bottom of the stairs, resting from what we thought.  The way she was laying, I kind of knew she was gone but didn't want to believe it.  I asked hubby (Jesus) was she gone, and he was speechless.  His eyes began to water, but he could not more.  I sort of poked at her lightly with my cane.  My baby had passed on.

She would have been 13 years old in December.She used to lay in the grass for hours.  

Missing her is hard, but I wouldn't have expected not to miss her.  A few days prior to this, I'd been experiencing vertigo.  Just a bit of dizziness and it was nerve wrecking.  On Friday Hubby and I walked about two miles and the next day, Vertigo.  The whole time, Oreo Baby was by my side, ensuring that I was okay and letting me know she was there for me.  But on Sunday night, she was looking strange.  She looked a bit worried, and so we kind of knew she was trying to hold on.  Frantically my 17 year old son was trying to call around to 24/hr vet advice lines..but I knew what they'd say; that she was old and it was probably her time and if we wanted they could put her down, etc.  Nothing that meant anything to me because we knew that when it was her time, she would be with family.  Who doesn't want that?  And so that's how it was.

Oreo Baby had diligently taken care of me since 2007.  My sister Shawn Lynn gave her to my son Christopher and I, and she's been my number one caretaker ever since then.  Not having her here feels so strange.  She gave the very best hugs in the whole world, and nobody can compare to her at all.  I told one of my MS support groups ( I have MS and I'm fabulous" ) and I received over 90 comments with condolences for her.  I appreciate the support more than anyone will ever know.  

I still have to take care of Spanky and Koche Cooper.  With limited funding, it's been hard but they are my therapy.  Please help me out http://www.gofundme.com/write-4msawareness if you can :) 

No sorry

A good read from a fellow ms'er

Never Apologize

By Nicole Lemelle—May 12, 2014

I’m Dying!

Or at least that’s what I feel like.

MS tends to put me in a fragile wavering psychotic state.

Between the optic neuritis, numbness, fatigue, dropping things, tripping and falling I think I may be losing my mind.

My dream for normal used to be so strong but now it is slowly withering away. Each passing day brings me less confidence that I can get my former life back. I always keep a little hope alive but that may be because I can’t face the reality that I will never get back to normal again.

CLick here to read the rest......
http://multiplesclerosis.net/living-with-ms/never-apologize/?utm_source=weekly&utm_medium=email&utm_campaign=140521&uuid=fcfb73789a92d48b3ab2dfdcb59c8c24

Help support my cause http://www.gofundme.com/write-4msawareness

Medical Alert

Yesterday had to be one of the most frustrating days I've had in a long while.  I went to a NEW shrink...and once again I got upset. Asking me dates and details that I clearly can't remember is frustrating. Then trying to change my meds that work and not giving me what I need....it was a bust trip.

 

Support me and my quest to do better  http://www.gofundme.com/write-4msawareness

Pain, Pain, Go Away

I'm hopeful about the new recently passed law in Georgia as it relates to our fight to legalize medical marijuana for MS patients worldwide, really. With my cognitive issues, I can't fully grasp what is going on, but I do know that the struggle is not over, yet.

It's enough to give you a headache.  Speaking of headaches, I'm so tired of having at least one every single day of my life.

The headaches hurt the most.  They make my eyes go blurry, even...and sometimes blind.  My husband gave me his laptop, which has a touch screen with zoom capability (yay), so it's at least easier to see if my vision is present.  My body pain is beyond imaginable, and I can't seem to NOT be snappy with people; but I'm trying to soften my demeanor.  With the amount of pain I'm in, my ability to deal with mediocrity, insufficient action, or anything else annoying is not very good.  But I thank GOD for my walk with Jesus Christ, and so I pray my way through this.

PAIN, PAIN, GO AWAY
DON'T COME AGAIN ANOTHER DAY

Sometimes I have to just make light of the pain that MS has caused me, but honestly it's not funny.  To wake up day to day in agony has been a hard pill to swallow.  At this very moment, my pointer finger on my left hand has a very sharp shooting pain in it, while my lower back is having spasms in it that hurt.  Also my elbow and shoulder blades hurt.  There's more, but I really don't want to continue to expand on all that's going on with me in the pain department, because there can be nothing done about it short of an one hour full body massage, which doesn't come easy nowadays.  Today, for instance, I've only been able to sit up no more than ten minutes without having to lay back down.  I'm working from the comfort of my bed today.  Everyone is around me, but nobody really COMPLETELY understands the extent of my pain.  My Chronic Pain. How could they understand that?  The MS Hugs alone are enough to drive anyone madd.

I have a supportive family, though.  Despite his own pain, my longtime caregiver/husband gave me a deep tissue massage tonight.  I feel so much relief.  If I could get that once a day for an hour, I'd be so thankful.  We're putting that on my list of must-haves.

I pray for all MS patients, and hopefully our pain will one day go away, especially if a cure is ever found.  Until then, peace, love, and light!  http://www.gofundme.com/write-4msawareness

My MS Fatigue ft Laura Kolaczkowski 's story

I was reading a blog post "Fatigue or Ordinary Exhaustion?" Posted by Laura Kolaczkowski—January 18th, 2014  And I found myself completely relating to the blogger.  Fortunately, I get enough rest because MS FATIGUE is quite exhausting.  As my life has turned to a new twist (realizing my dream), I must admit that I have slowed down.  This time last year, I was a burst of energy.  

  I wonder what I can do to "snap out of it".  My medication doesn't really help, as it is designed to slow me down anyway.  Staying calm seems to keep away serious relapses and most of the symptoms, and having a great support team allows me to fully function ( I do not have to drive, I do not have to do most things on my own, #marriedlife gives me full time help with the children, etc); however...MS Fatigue really is a drag.  My clients can appreciate the fact that they will not only be working with me, but with a team of professionals from my network that pitch in and assist for very low rates and sometimes even pro-bono!  I have MS, but MS does not have me.  

  When I have MS Fatigue, my family allows me to take a break and just rest/sleep.  Laura Kolaczkowski explained it best when she wrote     "Imagine you are in a deep sleep on your couch and you hear the smoke detector ringing in your house.  You stir a bit and then recognize what the offensive, blaring sound is coming from – oh no, you think, your house may be on fire and you should probably move, but you debate with yourself if you can muster the energy and you slip back off to sleep. That is fatigue – when you want to go, you know you need to go, and yet you can’t."  That's how I feel;I try to move during those MS FATIGUE moments, but just can't. It's a crazy feeling, best experienced during an impromptu nap, in my opinion.  And all other times, I go full speed, because that's mainly what I'm known to do.  Of course, if a smoke detector did go off, I would be up and out of the place...i'll crawl if I have to.  

 Read Laura's blog here 

 http://multiplesclerosis.net/living-with-ms/fatigue-or-ordinary-exhaustion/?utm_source=weekly&utm_medium=email&utm_campaign=140122&uuid=6e7747038173f66d1a5c4105b27db477 

HELP SUPPORT MY MS FUNDRAISER, WRITE 4 AWARENESS http://www.gofundme.com/write-4msawareness

Recipe: Avocado and Onion Egg White Omelet

Original Recipe Yield One Omelet

Ingredients:

• 3 large egg whites
• 1/2 avocado
• 1/2 medium white onion, sliced or diced
• 2 tablespoons olive oil
• Sea salt and pepper to taste

Directions:

1. Put 2 tablespoons olive oil and onions into pan or skillet over medium heat. Cook onions for a few minutes.
2. Pour egg whites into skillet and continue cooking until egg is fully cooked.
3. Add avocado to half of egg. Flip the other half of the egg over the top to make the omelet.
4. Remove from heat and enjoy!

For a spicy omelet, add 1/2 fresh jalapeno or 1/2 teaspoon red pepper flakes.

Photo Credit: elisson1.blogspot.com

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