Wednesday, September 14, 2016


Today I started Abilify.  No, it's not the cannabis; it's the world that i'm trying to fit back into and this is part of the treatment.

I said before that I do not play about mental health.  In 2004 when I was diagnosed with MS, I was mostly upset because it affected my actual brain.  That's going all in.  I was devastated.  I began twitching long after the initial relapse was gone and I was in "MS Remission" because I'd have to relive the "bad news" over and over and over again constantly.  Learning to communicate with others was simple enough because I would hide the fact that I was reliving it over and over again.  And thais the PTSD aspect of it and I typically don't get treated via pharmaceuticals but because so much of my cognitive problems have gotten worst over the years, fast forwarding to 2016 as of today I am on four different psyche pills to keep me sane.  It was three initially but because I really wanted to punch the MS doctor in the eye, and the fact that I can't let it go, we felt it necessary to treat my psyche issues asap instead of letting them go, and they understand how I was treated in that MS appointment was wrong. Thank GOD I had a witness, ya know, and #kochecooper to see about.  It would have been a hot mess had I just gone off on him for not giving me adequate treatment because he wanted to push more pharmaceuticals.  This, coming from a man who clearly did not read my chart and know that I'm a full psyche patient.  smh  I don't know, I stay to myself when I have to however the pain of MS has been being treated by organic means because I refuse to put some MS stuff in my body if they do not have a cure for it because the risks are too great.  And I know they are too great because I have an entire team behind me helping me not put unnecessary meds in my system.  Apparently MR MS NEURO wasn't on board.

Today I drank water and ate a salad.  I ate a lot over the last few days with a full time caregiver but alas I have a few days on my own.  I'm going to try to eat.  but MS does give huge head pain and I was denied massage therapy or acupuncture unless I pay for it on my own by the MS Neuro doctor, so that's where I am at.  The pain is too unbearable and I have no idea if there is anything wrong in there but they want me to take meds not even having a MRI.  Clearly they saw that I was not walking straight and no, I hadn't taken ANY treatment that morning, went in just my un-medicated self.  My pain was at a 5 perhaps because I got a brief massage before the office visit.  So today my head is hurting out of my mind through my eyes, in my temple, in the back of my head, on the top of my head and when my sis called she said "go smoke" so I did and it finally went down a bit.  But then it came back and I tried to sleep it off but I wasn't at home so it was very uncomfortable. I don't want the pain meds, I want the massage and acupuncture.  It's just not fair. They know what I go through.  THere is no NEED to take those meds to slow down the progression if you see that yes ,I have MS, but I am managing everything with the help of being in a zen environment as much as I can and getting the proper support I need and being in agreement with me and my tea on my treatment.  This neuro ms doctor told me it was too expensive to give me a mri.

Anyway,I still have time to make a decision.  I have to research more, but I have readers block and writers block becuase ive been mad at the doctor.  smh.  mad at life because all the Dr is trying to do is help me.  sometimes i'm mad then sometimes i'm joyful so it's all weird.  But I'll save that for another post.  That's another story altogether. Peace, love, and light and please pray i get some organic therapy for my pain.  My entire body is cramping so i'm going to sleep.  Oh, and not to mention over active bladder, also something acupuncture could stop.

Sunday, September 11, 2016

Down Two

Well...I'm down to 114lbs.  Yes, that's a lot of weight loss in two months.  HOWEVER, I can eat with "meal prep", so my caregiver is with me full time in order for me to eat.  And I'm eating. I'm cute and all but 114lb is not the move, not when two months ago I was 130lbs.  I have no "desire" to eat but I'm hoping that with no stress and assistance in eating, the weight will pick back up.  I still have tingling in my legs and feet and hands and arms nearly everyday and that has not changed, my fatigue is great, but I'm not having as many MS symptoms as I've had in the past...symptoms that I believe came from being triggered from all of the medications that MS patients take. And I'm so upset because when I went to the MS clinic, they were not willing to talk to me about organic options to treat MS.  It was basically "You can take one of two medications to stop the progression of MS, but MS cannot be cured".  I'm so annoyed at this point.

So now I'm on an eating plan.  My caregiver is here and my case manager brought me some raw foods so i'm going to work on my book and try to force myself to eat.  LOL Funny story, which I may do a story time about ( I don't know ) is that the other night my caregiver gave me some food to eat while I was really sleepy (my fatigue and the meds that I am on make me sleepy a lot anyway) and I was eating it while sleeping.  Too funny. See, I'm still trying to smile through all of this.

What I do realize about MS is that as a neurological disease, and that controls every aspect of your life.  Including your appetite. I never really feel hungry.  Ever. Initially I thought it was an aspect of my depression which is common with depression, but this is more than that.  I can go days without eating and I know that If I'm not monitored, I won't be bothered with eating.  When I went to visit my children last Sunday, my son actually fixed my plate for me and that's what made me eat it.  It was delicious (my grandson's mom is a wonderful cook and I promised her I would eat the meal she was preparing).

For some reason, I feel like even moving around decreases calories, and so because I walk two to three times a day, and not eating well, it's not looking good.  I know that once I'm full, I'm pretty much full for a long time and my bowels are not really consistent and I'm constipated a I know my system is a bit slower than others.  I've been noticing that.  Like even when I was on the all liquid smoothie raw diet, I still wasn't only defecating out liquid like one would think.  I was still having constipation, probably from weeks ago.  It's so weird.  Oh yeah, sometimes my appetite will kick in and I'll be super hungry, but then it floats away again for weeks on end. It's not healthy.

There are MS patients who go through this who are on medications for MS and also there are MS patients who go through this who are NOT on medications for MS.  There is no cure for MS so taking the MS Medications won't solve this issue, we can only treat our symptoms.  And because anything organic is basically on my own dime.  smh I'm going to look into getting some Zinc, etc, and continue to live in my zen environment.  My psychiatrist is working on getting me a medication that may trigger my appetite, as well.

As always, I'm keeping GOD first in my life and i'm thankful for the food that I do have available and I pray I'll eat it, even if it depends on someone else making sure I'm being fed.  I'm eating to live.

Tuesday, September 6, 2016

Rapid weight loss

I hardly eat. I'm 116 lbs. Saw the MS doctor today and was informed I need to be on a MS treatment ---- even though there is no cure.

Friday, September 2, 2016

Caregiver Duties

Top 10 Duties of a Caregiver

Although a caregiver’s work varies with different sets of duties each day, there are some basic tasks that remain the same when caring for a parent or senior loved one.
Take a look at these top duties of a caregiver to learn more about caregiver responsibilities and the rewards that come from caring for a loved one:

1. Prepare a Care Plan

Preparing a care plan that addresses your patient’s strengths and weaknesses is necessary to create when beginning your caregiving journey, so that you can determine how many hours of care a day your loved one will require.

2. Assess Medical Needs

Does your patient have prescription medication or need help with pain management? Meet with a doctor who can assess your loved one and create a medical care plan so that you can provide medical assistance at home.

3. Monitor Medication

Monitor your patent's medication according to their medical care plan, which should specify your duties and what times of day you should provide medical assistance to them.

4. Assist with Basic Needs

Assist your loved one with their basic needs, which could include: bathing, grooming and toileting.

5. Prepare Meals

Food preparation becomes increasingly difficult as we age. You can help your parent by doing their grocery shopping or preparing their meals, and by monitoring their nutrition.

6. Housekeeping

Maintaining a home takes more time as we age and become less active. You can provide assistance to a loved one by doing dishes, vacuuming or taking out the garbage.

7. Transfer

Your patient may have difficulty transferring – from bed in the morning to chair in the afternoon, for instance. Be prepared to help them move and make them comfortable.

8. Transport

Transporting your loved one to doctor’s appointments and other activities will become a common caregiving duty.

9. Companionship

In the midst of all these duties, it’s easy to forget one of the most important parts of caregiving – companionship. Focus on how rewarding it is to care for your parent and know how thankful they are to have you too. When you are challenged, these inspirational caregiver tips can help you put things back into perspective.

10. Monitor Performance

Finally, look at your loved one’s care plans,monitor the performance of their care and speak with a medical professional if any adjustments need to be made.
These duties are essential caregiving tasks, but it’s also important to remember to adjust them as necessary for the patient or senior that you’re caring for.
What has your caregiving journey been like with your patient? Do you have any caregiving duties that you would like to add to this list? Share your suggestions with us in the comments below.

Thursday, September 1, 2016

Where I've Been

 I go to a trauma group on Thursdays <rolls eyes> so that's where I am, I have 28 weeks of it.  I'm a therapist that strongly believes in therapy and a lot of stuff has my mental off center so I'm getting the assistance that I need.  This assists with <sigh> panic anxiety disorder, social anxiety disorder, ptsd, depression, bipolar disorder, paranoia, and disassociation disorder. I have multiple sclerosis and sometimes because things are not in balance, it's gets like that.  And I live in America where PTSD is very common.  So my breakdowns are not just my breakdowns, but also the breakdowns of our environment.  We are the world. Anyway, I'm sorry I have not been vocal with most of you...but I will begin to contribute more to the mag and the radio soon---i'm just not supposed to while in therapy, is all.  I roll my eyes and sigh because GOD knows I love On The Rise and I hate not working.  I hate when things are stagnant because of what we stand for.  And yet between MS, PTSD, and this other crap I'm fighting to put the pieces back together.  Mental illness is nothing to be ashamed of, and it's nothing to be embarrassed to say I had a nervous breakdown and am working hard to get back to a more functioning Boss Lady Attica Lundy Cooper.  I've got a lot on my plate, honestly, and still manic as ever. And on top of that my feet are tingling and so are my hands. My legs tingle and so do my arms. My headache has started coming back. Anyway, I have to get on a plane this weekend twice so keep me in your prayers and my destination is a secret because of my paranoia BUT I am okay and hubby's looking after me and so is my medical team.