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. :)

Doing The Right Thing By Our Children

I spoke with my princesses birth dad and step mom today. MS has really taken a toll on who I am in terms of who I used to be. I've raised several children and have a college freshman and my oldest about to have my first grandchild...but my princess has had it rough...we've lived with MS since she was two. She was diagnosed with ADHD long ago and that made it harder because she's not as independent as her brothers were. So I allowed her to go to school from her dad's house out of state instead of being held back by me and multiple sclerosis any longer.

I miss her. I miss her smile and her laughter and even her crankyness. MS has robbed me of so much but I will not continue to allow it to rob my children anymore. Visits on breaks will be nice because it won't be as intense as during school time. I feel like I was absolutely no help when it came to her schooling and my support team for a special needs child isn't what I would want it to be...I can't do math anymore of even complete projects or even feel like doing them. Money is tight, too.  I'm tired. Been doing this MS monster waltz since 2004 and I'm so tired. Quiet as its kept, my kids are tires of it too.

Princess's step mom is a dream come true. Her aunt has MS aonshe knows my struggle. I was afraid that Princess's father would take her from me because I had MS, but he finally convinced me that he won't. I can send her there but it would kill me if they took her from me. But her dad and step mom have ensures she's safe and I'm safe so now I can sleep at night.

Her step mom told me to just take care of myself. I'm in Colorado now treating the MS in my body all organically with organic diet (non gmo), cannibus and other herbs, essential oils and most of my journey is on my blog here . Hopefully when my money is right i can go visit my little one.  I'm sorry she's doing so poorly in school but they will catch her back up.

I feel like I'm winning. My husband is my twin Flame and caretaker and he isn't letting anything happen to me on his watch. I'm so happy that me and my baby have the support that we need, even in these most unlikely places. <3

No Stress Zone : IRS WOES

I have short term memory loss so when talks get too intense and I forget what we are talking about in the first place because all kinda other stuff is being mentioned that has nothing to do with the topic at hand,  there is no need for me to continue. I say hey, I'm done. Because really at that point the issues seem clouded in emotion.

It's hard.

I've been doing more "proof" with the IRS for my taxes. They are stalling and stalling and now they want more "proof". It's aggravating. And it's something I can no longer do on my own. I'm going to need assistance and my husband doesn't prepare taxes either. We already paid someone to prepare them in the first place. But that person is in Atlanta so they can't help us. This is getting harder and harder and all I want is my refund so I can handle some business. The struggle doesn't end and I just thank GOD for Colorado and the cannibus treatment.

The IRS has me so frustrated. Seemingly its affecting us all and in times like these its important to know how to calm down from the high strung energy/stress. For me, intense pain has already kicked into my hands and feet again. MS is so unpredictable and I'm afraid of getting sick. So I pray. And I cope. And I medicate. And I step back and say " okay world, I guess u got it for now", and then for now I'm done. What else can I do?

MS Headaches are the worst Migraines Ever

I had had it up to here (imagine me as i stand on tip-toes in a chair on top of a building with my hands outreaching high into the sky) day eight of an annoying head pain. I remember taking three or more headache powders a day in the past. It was not easy. Knowing that I was potentially damaging my stomach and so much more didn't easy my worry.

I was able to get off the headache powder once when I went to an all raw diet. The headaches had gone away and I was so very happy! Once I went off the diet, though, the headaches returned and I was once again using headache powder to dull the pain.

July 3, 2015 was the last time I had headache powder. That was in Atlanta. The very next day I landed in Denver and began the treatment of tincture and Phoenix Tears (both cannibus products). So far they have been helping with symptoms but now the headache is back. And along with that is the stress of money being low and the sad reality that I may have to come off the cannibus treatment if I can't afford it. I got word about the cost of it recently and without funding, I have to go without.

According to the National MS Society's website, " Although headache is not a common symptom of MS, some reports suggest that people with MS have an increased incidence of certain types of headache.

One report noted that migraine headaches were more than twice as common in a group of MS patients than in a matched group of people without MS. Other investigators found a prior diagnosis of migraine in one-third of the MS group being studied. A third study found that 20 percent of a sample group of people with MS had a family history of migraine, compared to 10 percent of controls, suggesting that there may be a common predisposing factor to both MS and migraine. Vascular or migraine type headaches have even been reported as the first symptom of MS."

The good thing is there is always a bright side. My headache has been so aggravating that honestly I may feel relief going back on meds if I have to. I hate thinking that way but I need to be able to go back one day and see my journey. My stress level has been to the roof: trying to get my son into college, making sure my daughter is adjusting, keeping an ear out for my oldest and my soon to arrive grandson, and wondering when we will be reunited with my husband's other two children. Coming out here feels like the right thing, but being out here with no transportation in a rural area is far from a practical situation for gaining funds. We will have to figure something out.

The Struggle

It frustrates me to no end how hard I struggle with life. The Struggle. Ugh. I'm strong, though, and finally free to explore my disease in a non toxic way to see what works and what doesn't work. Freedom is very important to me considering I'm trapped in this defected body with this horrid "invisible" disease.

First and foremost the gas I'm experiencing is like no other. To some it might seem minor, but its not. Nobody should suffer like this on a daily basis. It's not necessarily from gassy foods all the time, either. The most common causes include long-lasting constipation, severe diarrhea, stress, and ultimately a digestive system that is not working properly, nerve, and muscle damage. Yes...DAMAGE. This is typical for MS patients, which is annoying and...scary. I suffer from gas every single day of my life. I don't want to "take" anything for it, either. I want to know what's wrong with me so that I can treat it naturally, but all I know is that this is common with MS. This is so irritating.

Something else that's irritating is this restless leg syndrome. After treating with Thin Mint Cookies, Pre '98 Bubba Kush, and a Caviar mix AND tincture AND oil, not only am I experiencing that but I still have the headache I'd had for about five hours before I decided to lay down for the evening. This worries me. And I don't like stress.

I've been doing well up until now but my head is my main concern now. It feels tingly and out of sorts. My stress level has been through the roof. Plus not only did I misplace/lose our food stypen, but I also am nearly out of funds. Insurance doesn't cover cannibus treatments or organic foods, so that's an out of pocket expense that is now necessary.

People say "take Rebif again"or to get another injection med from my neurologist.  I found no improvement when I took injections for the three years I did take it. I read the side effects and I know it gave me irritated injection sites, severe nausea, shakes, chills, flu like symptoms... It's poison, what else would I expect?

I've been over-pill'd and injected by "medicines" that cause further damage. My community is, too, with Restoril (insomnia), Zanex (anxiety), and Norco (pain) and so many other meds for memory loss, fatigue, racing thoughts, heartburn, acid reflux, depression, tremors, seizures, incontinence, sexual dysfunction, blindness, etc. and now that I'm off meds, I see why: you have to be really bad off up at some point in a patients progression to the point where all those meds are necessary in order to have somewhat of a normal life. I don't think the government cares that these pills and injections are toxic. I suppose they say, " Let it kill them".  Pain is unbearable which is why so many of us give up the fight. I've been kicking my legs for about an hour at least every night and they are still restless even after that. This could drive someone madd.

I'm praying for all of my fellow MS'ers out there. Some are even homeless and some are all alone. I can help them if I can receive more funding.  They need to be in a peaceful environment like mine. Throughout everything, I have a caretaker that is dedicated, people in my life that support our caretaker/patient relationship, a MS Awareness household, and children that love me. Being in Colorado while my young remain in Georgia is hard, but I know that being a healthier me is better for them. Prayers for all of us is certain.

As long as I have MS, I will continue to spread awareness. There are too many unknown statistics, and too many unheard cries for help. The Phoenix Healing House is not doing the necessary research to find ways of treatment that are not harmful and more effective. Research takes time, but I am finding improvements with this MS patients health and will continue until a cure is found. Thanks for the prayers. Please donate at the donate tabs.

After Desiree

D's suicide post (  "Say No More: A MS Tale Of Suicide  http://supportmsawareness.blogspot.com/2015/07/say-no-more-ms-tale-of-suicide.html?m=1 ) got a huge response of condolences on facebook. When she was alive, she really didn't understand that no matter how little she had in terms of money or mobility or even mental stability or even moments without pain she had wealth in people that cared about her. Insecurity, padded with paranoia is hell on the spirit and torments the soul. In my faith, I believe that we all have contracts to fulfil here on earth, and I'd like to think that D, the MS patient, had fulfilled hers. I salute her for so many things on a spiritual level. I do.

It was at some point that she couldn't be convinced anymore that she was worth it, when pain got too severe, and when she was too aggressive and snappy to everyone for any little thing for anyone to sooth her. It wasn't nice.  But when moments were good and pain and fears took a side seat, we did have laughter when we she was in better moods. But the last time she got rude and pissed and depressed over her life and this bullshit disease called Multiple Sclerosis, she began to isolate herself as she always did (like most MS patients at some point). This was her end. And her beginning.

Not everyone is awakened to the spiritual aspects of life, but we are. Her transition from here opened up doors for others in ways one cannot imagine. I only knew her for the month of July truly, but I had been introduced to her on the phone prior on my interview for the healing house application. I came here for her so she wouldn't be the only MS patient and to get the house in order for future patients. It seems like Spirit and universe are working together because as a friend and writer, I'm here to tell her story.  I honor her and promise to give my all to the MS cause.

Now,  there is nothing cool suicide even though I understand transition. We used to watch TV and talk about MS stuff. We talked about suicide and i always told her it wasnt cool. She knew. She said our landlord had driven her nuts with being passive aggressive towards her and we would soon see that for ourselves. I dont really understand that but seemingly they have something not too good going on. Is it a scorned love affair? "D" said "hell no" when i asked about it. So did our landlord. Who knows? In the house, we are supposed to have a family theme, so nobody is Alone. Supposedly. But "D" was alone. I never saw our landlord really talk to her. Our landlord did indicate she was tired of Dealing with "D" and was going to send her a notice to vacate at the end of the month. That's scary for someone on limited income. But our landlord never thought her MS was that serious and I had to tell her it was.  Depression can be deadly, however, and sometimes no matter how many people surround you, feelings of loneliness and despair could kick in. I aim to push harder so people know suicide isn't worth it.

So here I am...living...here.  I've got so many reasons to just give up. I have no money. I feel like my ex gf/co-caretaker abandoned me without the curtacy of her/us getting therapy. My abandonment issues alone would cause me to sink lower into a pit of sadness. There is no cure for the diseases I have. I need assistance caring for myself and my children. My tax situation is messed up and the IRS is holding my funds. I don't have people who are willing to help me. My old best friend still isnt speaking to me due to my memory loss as far as I can tell. My pain level is always high. My energy is low. Nobody understands. There are many other things that depress me but regardless, I'm not giving up.

Life is a gift.  I'm a light, and I'm here on Earth to live, to grow, and to complete my work here. I am researching for a cure for MS and hopefully other illnesses. I'm excited because my elder (and spiritual mother from a previous lifetime) "V" is finally coming to stay with here so I can know for sure our bond if any. She and our landlord say I'm reunited with them from another lifetime and though I dont know how true that is, I do of course know I married my twin Flame and no matter how many "lives are involved", he's got me protected in this one and I am protecting him too. We are so far away from home and family. This is bigger that most people know. Everything is happening for a bigger purpose. The "Phoenix" is rising, true enough. I wish "D" were here to experience this, but she chose to leave and so that's that and I've got a feeling that was just the start. Life goes on one day to the next. It's a choice, after all. Life. Love. Choice. Life isnt all that bad. I will certainly be staying awhile.

Say No More, a MS tale of suicide

The coroner ruled it a overdose; "all her oxys were gone and a bunch of her morphines. They're going to try to find her son tonight. They have to seal her room." It had been a stressful life for her and she never felt like she was worth anything to anyone. She was angry and volatile, sad and lonely, and all negative energy was being pushed aside like she was. Her depression was spinning downward and she was feeling destructive towards herself and MS did a number on her and suicide was the end result. I wonder how many other times she'd comtiplated ending it all. She said she had an ex wife that she hated and a son who didn't care about her and that nobody felt she was worth anything. Those are things she said often.

"Just wanted to say goodbye to everyone I love and I don't have the time to call you all but you know who you are I'm sorry but I just can't do this shit no more love you" is what she posted on Facebook four days ago, and she was alive yesterday. Barely. No more. Finding her lifeless body was surreal. I tried my best to remain calm...stress is not good, nor did it make sense. She was gone. I will never forget her, though. When they took her away, there was question on how to notify anyone... Her son didn't even know because nobody knows her family. We only know she had a son and a father.  The lonely and painful life of a MS patient without anyone is tragic. All those pills prescribed to the average MS patient are a suicide waiting to happen because with that many pills for a patient, its not safe. Half the time a MS patient feels better off dead due to alllllll the complications. I wish she could have been stronger until help got here.  "V" indicated that her passing shows us that MS patients in the healing house will need to check in with someone at least twice a day just to make sure and must have emergency contact just in case . "V" says a lot of stuff and I've yet to see her in action face to face, but honestly not many people check on MS patients, so I doubt that'll happen.

"Most studies have documented a higher suicide rate in MSers compared to the general population, and suicide was associated with several risk factors: Depression severity, social isolation, younger age, progressive disease subtype, lower income, earlier disease course, higher levels of physical disability, and not driving.

CONCLUSIONS: Clinicians should be aware of the fact that suicidality may occur with higher frequency in MSers, the available data suggest that the risk of self-harm is higher than expected in MS patients."

I hope she's free. Its so hard to be in the world alone, and this So much has happened since I got here, and I know I'm here for all the MSers, so I need funding. We need funding so that we can have the resources to save lives. I don't want to know  that another MS patient committed suicide. Awareness saves lives.

http://consultqd.clevelandclinic.org/2015/04/suicidal-thoughts-not-uncommon-in-ms-epilepsy-patients/

"Patients with epilepsy and multiple sclerosis (MS) show high rates of depression and an increased risk for suicide. They also are more likely to think about death and self-harm than are individuals with other chronic illnesses, such as arthritis or cancer, according to a study of suicidal ideation conducted by Cleveland Clinic.

" An individual’s coping capacity is influenced by constitutional variables and resources.  The subjective thoughts, feelings, and beliefs of demoralized individuals are that they have failed to meet expectations; their own and/or other’s expectations.  They feel overmastered.  There is a feeling of being unable to cope with some pressing problem.  There are simultaneous feelings of being powerless to change a situation or to extricate themselves from a predicament.  There is a sense of isolation; a feeling of being unique and, therefore, not understood.  A common subjective experience may be characterized as follows: “I feel awful.  No one else understands it.  I’m not going to burden anybody else with how I feel.  Therefore, I’m the only one who feels like this.”  We all have coping strategies that we use to deal with what life throws our way.  And, we all have a point beyond which we no longer can cope on our own and become demoralized. " That's depressing.

http://myelitis.org/newsletters/v8n1/newsletter8-1-02.htm#.VbaRxiPnbqC

Major depressive disorder (MDD) affects 20 to 50 percent of patients with epilepsy, MS, Parkinson disease or dementia. Depression adds to their disease burden, and suicide contributes substantially to excess mortality in this population."

With statistics like that, I'm glad I am using alternative methods for my medical needs. Despair is not an option. I'm 23 days off pills and I'm still fighting for a cure. Maybe even more so now.

May she rest in peace.