I've spent time trying to get my children's medical needs squared away. Being out of town and away from them is difficult. Being low on funds and not having a home yet is difficult.
Saturday, December 19, 2015
I've spent time trying to get my children's medical needs squared away. Being out of town and away from them is difficult. Being low on funds and not having a home yet is difficult.
I know I need a MRI. My head is hurting as I type this. So aggravating that I can't get the medical help I need, which is one of the other reasons I've been taking control of my MS. "Feel Me" when I say I am so tired of these medications with a billion side effects, anyway. I received an email with Madeline Stowe, who happens to be an actress I really like. She is a spokeswoman for MS as well. Well, I'm not sure how FOR MS she really is after I saw what she was presenting. Her dad had MS so she's really trying to help, but she's pushing a new medication called AUBAGIO® This medicine has so many side effects. The presentation goes on to say it's not just risky for women who plan to get pregnant, but also for men who have partners that plan to get pregnant, and damaging to the liver. They even have a special registry for pregnant women. WTF is this medicine?!
This is why I am speaking out. I trusted Madeline, to an extent. I never thought she'd suggest something harmful, but this medication is just that. Harmful. As if MS patients haven't had enough harm done already. This is why more celebrities and government need to support medical cannabis (marijuana) . Marijuana does not kill, it heals. And even this Baclofen I've been prescribed to take has side effects, though not as much as AUBAGIO®. With Baclofen, Drowsiness, dizziness, weakness, tiredness, headache, trouble sleeping, nausea, increased urination, or constipation may occur. Right now the only alternative is Baclofen or severe body cramps. Or cannabis.
I'm testing out different strains of cannabis. So far "Wheelchair" is helping with pain and "Purple Bush" is working out okay. There are some pain patches I'd like to try but finances for cannabis are very limited. Broadway Smoke Shop is still donating a percentage of sales that are made on the days when Jesus and I can go there, and so that's really been helping with living expenses including my cannabis treatments. AUBAGIO® causes liver damage, and so do a lot of other MS designated medications. Risk of liver damage is what got me off all of the medications before. I'm saddened to see an actress I like promote this treatment, but as of right now they have findings that it's helping.
- Have severe liver problems. AUBAGIO may cause serious liver problems, which can be life-threatening. Your risk may be higher if you take other medicines that affect your liver. Your healthcare provider should do blood tests to check your liver within 6 months before you start AUBAGIO and monthly for 6 months after starting AUBAGIO. Tell your healthcare provider right away if you develop any of these symptoms of liver problems: nausea, vomiting, stomach pain, loss of appetite, tiredness, yellowing of your skin or whites of your eyes, or dark urine.
- Take a medicine called leflunomide for rheumatoid arthritis.
- Are pregnant. AUBAGIO may harm an unborn baby. You should have a pregnancy test before starting AUBAGIO. After stopping AUBAGIO, continue to use effective birth control until you have made sure your blood levels of AUBAGIO are lowered. If you become pregnant while taking AUBAGIO or within 2 years after stopping, tell your healthcare provider right away and enroll in the AUBAGIO Pregnancy Registry at 1-800-745-4447, option 2.
- Are of childbearing potential and not using effective birth control.
Monday, December 7, 2015
It says "THE BEST MEDICAL ID BRACELET I HAVE FOUND! YOU CAN SET UP YOUR ENTIRE MEDICAL RECORD WHERE IF SOMETHING HAPPENS ALL THE MEDICS HAVE TO DO IS SCAN YOUR BARCODE AND THEY HAVE ALL THE INFO AT THEIR FINGERTIPS! BEST PART IS THEY COME IN ALL SIZES, COLORS, AND STYLES! I LOVE MY ENDVR BRACELET! MINE WAS $20 GET 20% OFF TODAY BY TYPING DIABETES20 IN THE PROMOCODE! www.endevr.com/store/
I love this idea. When I first had my initial MS flare up, the first thing I told my boss was "I AM NOT DRUNK" . I was petrified and didn't know what was going on with me but needed her to know that I wasn't drunk. Oftentimes people may confuse the slurred speech of a multiple scleroses patient with that of a drunk person's speech, but it is not.
Speech disorders are very common with MS. The brain stem has a lot to do with it. With MS, you have lesions in different parts of the brain and that can cause changes in the speech pattern. It could be very mild and almost undetectable or it can be darn right outrageous and uncontrollable. I've had moments where I've even had something that sounded like Turrets. There's nothing quite like having your tongue, mouth, cheeks, face go numb. When tremors are apparent it's almost impossible to get things sounding "normal".
Thursday, November 5, 2015
I've spent all morning in and out of the restroom. Tummy issues this time. In not complaining; this is typical for me and so many other MS patients. Already 7 trips. So far no bladder issues but definitely bowel issues.
We are still seeking housing. I really need my own restroom. Carrying back and forth supplies to the restroom is tiring. Mainly baby wipes. I miss the comfort of having a home.
I lay down while typing this knowing I need to once again go to the restroom. Its exhausting, though. But necessary. Prayers.
Tuesday, October 20, 2015
Now that I'm in Colorado, I had to move all of my things here. Switching states with Social Security and Medicare and taking care essential as well as taking care of business at Human Services. I have to wait until November to see a medical professional but ateast its done. Still looking for housing. And now I have to figure out the children's insurance too.
There are places that allow low income families to rent, but they are hard to come by with the housing as it is. Over 1,000 people are coming into Denver, Colorado's airport every week, moving here. Real estate has gone up, availability has gone down, and homelessness is abundant. I hope to find housing soon before the snow hits.
Like many, I'm sharing housing with others. Its definitely not the peace that I need. Having to conform to others, its not an easy task. I know now that we have got to get assistance in finding the resources needed to find our way around the Colorado ins and outs. Already I'm having issues getting insurance for my kids in Georgia. I have no idea who can assist me, but I know I must find a way. Here it is 2:58am and my roommates have company and I can't sleep around strangers so I have to stay up. This can't happen again, though. I'm thinking on how to make things better for me, so I can be treated like a patient instead of a burden or a target.
I'm learning a lot about people along the way. Not everyone is as courteous as I am not is everyone as kind. It is the things we learn along the way that help pave our paths. I'm growing.
Fingers hurting as I type on the floor of our shared room, I'm trying to take this in, as well. My privacy issues have pretty much reached its pivot and I'm readying a change in my life. Discovering that some people live vicariously while expecting others too shocks me. I've never been so unthoughtful and yet I know others are. I was told the company needed to rest her eyes because she worked late but I know she came to see her friends, smoked with them, etc...she could have gone home so guess what, she still has to. In the meanwhile, I cant sleep because the room isnt secure. Its 3:12am, but no sleep for me. As of Nov 1st this place changes. It has to.
I'm tired of moving around. Transition and transformation is huge. Denver is the time and space for change for the better. Change will come.
Friday, October 9, 2015
When life gets bad, some MS patients want to end it all. When life gets bad for me, I cling to my faith. There are a lot of things that can bring you down, but hanging on is always the best way to go. Life is too precious to give up over circumstance. I'm learning that time in some way heals all wounds, one way or the other.
D the MS patient's memory is still with me. The isolation, the frustration, the pain. On the other side if that was the laughter, TV shows, her sense if humor, and talks of her son. I remember making smoothies with her, and comparing our MS experiences. The worst memory is finding her lifeless body. To see the ultimate "give up" was hard. I'm still quite upset about it considering all I've gone through.
Had my children been with me, I'm sure I'd made different choices, but they aren't so I went a different route. One that hasn't been the best experience. Im out of one situation but here I am in a place unfamiliar and not as secure as I'd hoped. Being in a relapse and being sensitive to so my environment is challenging, to say the least. I'm glad I'm not giving up but Lord knows this is hard. Moving from where we were to where we are is progress but still uncertain and the uncertainty is probably one of the things that worries me the most, which causes panic.
I'm pushing through.
I'm on the number 12 Denver bus headed to job and housing interviews and of all times, my right hand begins to tingle. The first thing I do is shake my hand to make sure its not poor circulation going. Its not, that I'm aware of. So what then?
I'm still in relapse. Everything that makes me panic is now intensified. Mainly its finding housing and jobs. But also my panic attacks are being esculated and that's making things worst.
" Numbness of the face, body or extremities (arms and legs) is one of the most common symptoms of MS. Often it’s the first symptom experienced by those eventually diagnosed with MS. The numbness may be mild or so severe that it interferes with the ability to use the affected body part. For example, a person with very numb feet may have difficulty walking. Numb hands may prevent writing, dressing, or holding objects safely.
People with MS who have severe facial numbness should be very careful when eating or chewing, as they may unwittingly bite the inside of their mouth or tongue. People with numbness over other parts of the body should be careful around fires, hot water and other sources of heat, as they may suffer a burn without realizing it.
There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation."
Thursday, October 8, 2015
After having to get back on BC powder, needless to say I'm disappointed. My sister friend Jameian and I were talking about how bad our migraines were. For months I'd been looking at a product called the IceKap http://www.icekap.ca, and so when I thought about it, I sent her the link. I didn't think about it again for another week when I was outside my hotel room earlier today talking to a neighbor Jacqueline about massisve migraines. Its more common than not.
My conversation with Jacqueline brought up the fact that doctors will prescribe you sometimes multiple pills and/or several dosages just to keep the pain managed. She just went to a Colorado hospital for a few days of illness and they prescribed oxycotton for an upset stomach, severe abdominal pain, and no appetite! What are they doing to us? Smh
The concept of the ice kap is promising for patients like me and others like me who want no more pharmaceutical treatments and more of a natural organic alternative.It's made so you can Ice it For Migraines, Headaches, Hangovers, Chemotherapy, Cold and Flu symptoms, and Concussions ( the Medical grade gel packs hold temperature up to 45 minutes). It is also made so you can Heat it for Muscle Aches, Fibromyalgia, Stress Relief, Chemotherapy, Cold and Flu symptoms (Medical grade gel packs hold temperature up to 45 minutes). The Ice Kap uses essential oil liniment, which is great. On my own, I've been dabbling around with essential oils. Peppermint seems to help with headache. I'd probably use that, as well, if its not included.
"How your works…
So what's the cost for non pill pain relief?
Icekap kit including 01 - Icekap - Small
Icekap $59.99, 02 - Essential Oil
Essential Oil $12.99, and 03 - Extra Gel Packs
$19.99 Total $92.97 Shipping $9.00 $101.97 Sales Tax Grand Total $101.97
I totally think it's worth it. I'm putting it on my wish list.
Friday, September 25, 2015
Monday, August 24, 2015
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
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.
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?
Wednesday, August 12, 2015
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.
Friday, August 7, 2015
Wednesday, August 5, 2015
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.
Monday, July 27, 2015
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.
"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.
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.
Tuesday, July 21, 2015
17 days and no meds. Im stoked! And now i'm going for more! New diet!!!!
In August i'm going to go to mostly raw fruits and vegetables. Last time I did that, I had cravings for junk food really bad when I stopped. I think training my body on not eating wrecklessly can improve my health, too. More raw, less mess. No gluton. No saturated fats. No dairy. No salt. No transfat. No sugar. These are definite no-no's when it comes to eating healthy with Multiple Sclerosis.
I know im "sick" but not too sick to try something new. I know as a woman with MS I am at higher risk of heart attack, stroke, heart failure, and atrial fibrillation (or flutter) than those without MS. I've had heart fluttering for some years now but never knew it was MS Related. Also saturated fats come primarily from animal-based food, which I never knew. Fatty red meat is now off the menu. I pray for good. No more foods with palm and coconut oils, either. Saturated fats are known to raise your LDL, or bad, cholesterol. High cholesterol can lead to heart disease.
I'm adding Avacado to my #1 food to keep. On The Rise Magazine's Xtra Angel just did a piece about it explains all of its nutritional benefits here http://ontherisemagazine.com/why-you-should-add-an-avocado-to-your-diet/ .
I've been getting away from dairy. Some specific proteins in cow’s milk could be detrimental to people with MS. There are better ways to get nutrients.
Too much sugar leads to excessive weight gain. Excess weight also increases fatigue, which common among people with MS.
Off the list are commercially baked cookies, crackers, pies, and any other packaged products whose ingredients list includes trans fats. Keywords to look for on nutrition labels are partially hydrogenated oils or shortening. We know that trans fats increase inflammation inside blood vessels and thus could lead to cardiovascular problems.
The more salt in MS patients have in their diet, the more likely they are to relapse and have a greater risk of developing new lesions. Excess salt can increase your blood pressure, another path to heart disease.
White rice, white bread, and white pasta are in the off list, too. These processed carbohydrates, which elevate blood sugar, also appear to hurt the heart, especially in women. “When you’re trying to deal with MS, you don’t want to have to deal with other diseases like heart disease and diabetes as well,” Jamieson-Petonic says."
Gluten intolerance in MS patients are prevalent. Gluten is a protein found in wheat, barley, and rye. Only the 1 to 2 percent of the population that has celiac disease, an intolerance to gluten, must go gluten-free. Many people without actual celiac disease, however, find they feel better overall when they eliminate gluten from their diet, so I'm removing it from mine.
Sacrifice is key, and I'm willing to stop the madness if it gives me more life. Day 17...goals.
Sweet sixteen. In the mist of insanity of the day, I made peace. Today has been so stressful but I know everything is alright. That's the energy. I'm still toxin free.
I had to explain love and light today. The ministry continues and we continue to preach love and light. It's really simple... I can't have a lot of escalated conversation or I risk relapse. That's how we live. So when the day got hectic and emotional and things were frantic, we were able to help someone by telling them how we live (peaceful) and how we won't live (in chaos or fret). Initially we got push back, but then love shined through.
Still, my headache worstened...but the treatments help and I feel like there is hope for more releaf soon. Due to the escalations earlier, I feel slight tremors in my mouth and more fatigue. I'm ignoring it, though. I know that emotional situations occur and its my gift to get through them peacefully.
Oftentimes in emergency situations or frantic ones, people end up fighting each other instead of listening to each other. People misintrepret what others say to them and oftentimes misunderstandings occur. For whatever reason, people are sensitive and will think someone is attacking them when they are not, causing the situation to esculate. This is chaos. When people have the kind of personality that folds under pressure, its hard to get through urgent situations peacefully. Those people are dangerous for me during those times, and I try my best not to be around them or I teach them how to be around me.
And yet I rise.
Being the target of anyone's frustration is dangerous for me, but I find that the combination of Phoenix Tears and Tincture from teacher keeps my body at an even relaxed internal enviornment for the most part. That is amazing, and I'm so thankful because I still have not been able to fill my meds. This is the longest time I've gone without it in a while. I'm "aware" and consciousness is amazing. I really can't wait to get more into yoga and meditation because I feel better. I'm not frantic or panicky (as much).
My social anxiety is better. Yes, I'm still anxious to talk to other people but not to a point where I'm extremely sick. I'm scared that I will still have a fluke episode and have a seizure or bad relapse but fear is the enemy and I'm dismissing those ideas. I'm trying to shut down many things that will overwhelm me, and believe me that is hard. But I'm making it one step at a time.
Monday, July 20, 2015
I used to have the motto "I will sleep when I'm dead" and was a member of the #nosleepcrew. I was approaching Fourty and for the life of me, I couldn't slow down. And then I relapsed, and while in relapse had my identity stolen, a partner desert me, had hardly anyone check on me and my kids, and it was bad. It was crazy and I had no help.
When I came close out of the relapse, my place was a shambles and there was a pest infestation in the building I was in and I just wanted out because management wouldn't move me or resolve the problem. Because I wouldn't pay the rent, I had to go to eviction court and because I could not speak for myself due to nervous feelings, I got evicted. I didn't have it in me to fight, so I began to find my way back into the world. I had a lot of Fatigue, but I pushed through. I was on about twenty active meds at the time, and was scaling them down slowly but surely. Pills kill. That was in 2011. My, how time flies.
"My best advice for anyone that doesn't understand MS is to load them up with books, watch "When I Walk" available on Netflix, or have them attend an MS dinner with a good program.... Youtube has some very good videos as well. If they are unwilling to learn more, ask why" posted someone in one of the MS support groups I'm in. People truly don't get it yet, and I hope they will soon. I go through so much and yet I'm still here, just fighting for a chance. I'm blogging while laying on my back and before I laid to the side then before that I propped myself on my elbows. I can't sit up very long without hurting and I have to move around and pretty much lay in all kinds of positions to find comfort. It's exhausting..really everything hurts but I'm treating for the pain. I'm learning to grow my own medications and this means I will live longer. I don't want what happened to me before to happen again ever. I'm safe now, but I don't want to be sick any longer. I'm fighting for a cure.
Please take the time out to research Multiple Sclerosis. I say look me up, but what I want you to do is research this disease that I have. I share my story so that it's told, and also to help others. I am writing 4 MS awareness. There's no cure but I'm fighting to live and hopefully by spreading awareness I can help save others from what I've experienced. My advice to anyone with MS is to build their support team so that they can take care of their family and take care of their health. I'm fighting so hard and I'm tired...and I choose to sleep now because Fatigue is kicking my but, but I'm not dead.
Being in the plains near the mountains, I'm in fresh air and sun. The sun is hot for me since Colorado sits high and is closer to the sun. I can't perform in the heat but when it cools down I go outdoors. I do yard work and climb stairs and walk dogs everyday, so I'm getting plenty of exercise (and soreness). By nightfall I'm tired already and with my treatment I'm able to fall asleep with no problem. Day 15 with no Temazepam... And for an insomniac like me its amazing.
Our teacher had me watch Super Soul Sundays and it really hit me back on my path. Rafael is ensuring that I get better and this is the first time I've been supportive of a MS treatment...most times non of the pills actually work and do more harm than good.
In July 2015 I'm still dealing with identify theft issues, but I'm also pill free. Now I have to find the treatments for some of the other symptoms. I'm trying to document more so that we have records. So much of my life has disappeared from my memory so I want to capture the rest of it by writing so a cure can be found. If I can help other MS patients live a drug Free existence, I will.
Cannabis is not a drug. It's a plant. And GOD gave it to us. It's our right and our hope for today.
Sunday, July 19, 2015
Sometimes I go through the worst relationship issues with women, but I thank God for my husband Rafael "Jesus" Cooper who sticks by me no matter what and never abandons me. I've got real abandonment issues because of the relationship I had with my mother. Because she left me, tons of horrific things happened to me. I was no longer safe. I've forgiven her, but im damaged for life and it affects me horribly when a woman (or man) abandons me. Because of her leaving me, i got mollested, raped, acquired a drinking problem at age 14, and left home at 16. Growing up knowing that she was around but just not with me killed me slowly for so long. I have flashbacks and it is a nightmare. Time heals but it's between now and "time" that's the difficult part.
The break-up rate for spouses/friends where one has MS is over 90+%. There are several reasons as to why this happens but it is an ugly statistic that goes with this disease. In most cases, the healthy person just can't cope with the disease and thus the split.
I get that. The statistics scare me and I'm always feeling bad about my special needs because it can be a lot and I'm afraid it will overwhelm people and they will leave me. Most people cannot handle that my caregiver (Rafael, my husband) has to assist me with my daily living (assisted living). Because we are twin flames, our connection can be intimidating or cause insecurities. But its very necessary because those statistics scare the hell out of me and I've had countless "loved ones" leave me high and dry due to my disease and the extra assistance I require.
I'm thankful for my husband. He takes the mommy nightmares away. I try to minimize my needs so that it's not too much for him. I'm seldom without him, as he is the only safety I have (proven). He protects me, and I protect him. We protect everyone else in our family and tribe. He's giving up everything to ensure that I'm healthy. Anyone that truly loves us loves the fact that we do have this bond. It doesn't prevent us from loving others because we spread love and light, we just love together. Sometimes darkness from others shades our way but we are loyal and faithful to our family and our marriage.
I don't like what MS has done to me or Rafael. I don't like that we are looked at sideways because we are inseparable. Codependency isn't fun like it seems to those on the outside looking in. Even "insiders" dont get it and definitly don't always support it. I know that can be intimidating and make others feel neglected because we require so much solitude with each other, but it has to be like this because its safe and has shown that I have decreased tremors and seizures... And it's worth it.
Having security that I have someone by my side means everything to me. Having someone to look after me and my kids is essential. Just knowing I have Rafael makes me feel safe, and anytime that is comprised I have fears, anxiety, and symptoms begin to appear. I can't apologize for the way I have to live. I just want to be loved and cared for. I'm safe with him.
Safe from the statistics now, I'm focusing on my health, my husband, and my family. I'm pulling myself together and I'm 15 days off meds despite my personal issues with our former girlfriend. I'm glad we have our friendship but I have to keep a little distance to keep my health stable. I'm so disheartened by so called loved ones leaving me because they cant handle my special needs. So many "chuck deuces" at me and disappeared out of my life due to complications with my MS and the way I have to live (and love) in relationships. Everyone says they won't leave but they do. It's a lie they keep convincing me to believe, too. I wear my heart on my sleeve. I have accepted it all, but it pisses me off because I didn't ask to be this way but I AM. It's too bad if I dont want to live this way because I'm choiceless. I dont get to just walk away from it. If we love each other we should stand by each other and if its hard then we just have to pray together and work it out but leaving is like death to me and it is scary.
Life is filled with ups and downs and this too (heartache and disappointment) shall pass. Everyone in the healing house is rooting for us to find a cure, and I'm thankful. 15 days free in this crazy world is amazing. I am blessed.
Say no to stress.
Saturday, July 18, 2015
I walked in mountains. It was my first mountain in Colorado, in the same week that my life took a hit personally. It was like being pushed from a mountain, honestly, and I fight very hard everyday to maintain my composure. But I cry myself to sleep and pray a seizure doesn't decide to pop up on me. Relationships are scary for a patient who has Multiple Sclerosis. Relationships are scary for me.
This is the 14th day I've been without meds. I found out today that my doctor mailed me my prescriptions, and now I can call my insurance company and get on the ball for a vacation override so that I can fill my prescriptions here. It's not safe to be completely out of meditation regardless of how organic you are going and to be a person with a chronic illness in another state without emergency meds is not a good thing.
I'm super sensitive now. Could be 14 days off of meds gives withdrawal symptoms? I know Xanex is a real buttkicker and so that buffer is gone. All buffers from meds are gone. How does that affect the central nervous system? Does that make me super sensitive or is that my nature? I'm putting an analysis on it all.
I'm thankful even so...14 days is an accomplishment. Reminds me of once upon a time before MS. Those were the days!
It's 9:22am. It's too hot to go out. I'm disappointed. I knew I would be. The sun makes it impossible to get anything done until its cooler. Heat or high humidity can make many people with multiple sclerosis (MS) experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently. Most people with MS avoid hot baths, hot showers, and heated swimming pools.
Some of the things I do require assistance. Most things, actually. Motivation is needed. This is depressing because in my heart I want to do so much. I suppose it's fair that I have to wait on others since so often they have to wait for me, but this is truly handicapping. The Aviary is really too heavy for me to complete alone, so when its too hot we can't do anything.
Last year I never got things done. Housework was impossible because nobody wanted to help me and I have issues lifting,pulling, bending,pushing,etc. This year I have to do better about making better choices for myself, and to get the help I need. It worries me when I can't get help. Oftentimes money is the obstacle. Or willingness.
Fighting depression is a task for anyone. I'd feel so much better if my daughter was near me. Today will be a better day...just gotta be patient.
I'm pushing myself so hard out here in Colorado. It's amazing to see myself do things I never thought I'd be able to do. I'm exhausted, though. With every little feat, I'm perspiring and light headed. But I've got my eye on the prize.
I suffer from MS Fatigue, and that's why I'm exhausted. "Web MD" does a decent job in describing MS Fatigue, something that so many of the MS patients I know suffer from, including our roommate Des, another MS Patient.
"Multiple Sclerosis and Fatigue
Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.
Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved bysleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.
According to the National Multiple SclerosisSociety, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue."
7:33 am and I'm waiting on Rafael so I can start my day. Honestly all I want to do is lay down, but if I did it would mean admitted defeat, and I can't lose. Putting up this Aviary means that when something crosses out path, we are up for the challenge. It symbolizes getting better and stronger. I need this just as much as the birds do.
Being a part of a cause bigger than yourself inspires you to do more. It's imperative that my team helps me win, because I'm going to help them win. These birds deserve a better life and our teacher deserves happiness (she does so much to help others).
As I rise, my hope is that my day goes well and that I'm able to do my part without obstacles getting in my way. After this task is complete I hope to complete the new MS program I'm working on. This Colorado air will do MS patients good. I see the bigger picture.
Friday, July 17, 2015
Today we put in hours in building the Aviary for the birds. This is the first time Rafael and I have ever put up one of these, let alone built one from scratch, but we have a great teacher.
This is day 13.
What's going on is:
I had crying outbursts PRIVATELY ( i'm super sensitive).
My body aches everywhere.
I have a headache that keeps hurting.
I'm experiencing bladder and bowel issues.
My arms hurt (oh yeah, that's a part of my body)
Slight random slurring of speech
What's not going on is:
I'm not "startled"
No potty accidents
Day 13 has been a long day. Aside of building the Aviary, the emotional issues I'm having are a distraction to say the least. I'm thankful that I'm getting so much support, though. Still no word from Dr. Stappenbeck's office. I can't imagine why since I've reported I'm out of my meds ( just in case I relapse). On the up side, Keisha and Angel have been on the forefront of my Write 4 MS Awareness project and our teacher is molding us in ways we never imagined. I'm missing my daughter and all my children.
I hope to start doing videos and interviews on M S soon. There are so many aspects of MS that I want to share with the world. I'm hoping to make this invisible disease visable.
Another day blessed to be here.
Thursday, July 16, 2015
Still no meds. I called Dr. Stappenbeck to ask for a prescriptions, but I'm not getting word back on if I'm getting the prescriptions or not. Meanwhile, I'm still trying to get through the loss of a close relationship and running out of meds is not wise. I took a leap of faith in coming out here to try alternative treatments, but never expected to not have access to prescriptions if needed.
The problem with America is that it's all about the money. For me to even have to leave Georgia for safe alternatives was and is ridiculous. I will be going back soon but still, I should be able to be free to have access treatment anywhere I go. It's up to me and people like me to continue to vote for our GOD given rights.
Today Rafael and I put up a bird Aviary outside. Barbed wire, steel poles...its going to be beautiful. Healing House teacher says its good for us to finish projects together so that I can learn with support. I find that it works both ways, the support. I'm learning some things and am seeing how I could do things better. Being out here allows me a lot of time for reflection. It's good for the soul.
I miss my daughter terribly. I'm doing this for her so I can have energy to do things with her.
Wednesday, July 15, 2015
Incredible. I lost a great love yesterday. It was taken away, actually. I think it was love. Whatever it was, it hurts. I'm so thankful that everything wasn't taken away. It's day eleven, and I thought surely I would not make it today. But I did. I'm stronger even in my weakest moments.
So stress escalates MS relapse occurrences. Today I've tried to zone out as much as possible. I watched TV. I played with the animals. I had to get refills of my treatment and I'm cutting back on doses so that I will be able to afford this. 4cc of Phoenix Tears and 12oz of tincture hopefully will last me for two weeks. The amount of pills I normally take to control my symptoms. I'm now more active than ever before. Mind over matter, this gives me life.
There is one other MS patient here. Rafael has been helping her as well. Being an experienced caretaker came in handy. I'm thankful to be helping other MS patients.
I'm tired. I'm happy but sad. I hope my sadness doesn't make me have a relapse. I'm trying to remain strong.
Tuesday, July 14, 2015
My head hurts and I've had a long day. A piece of me left today, but I know that I will have new beginnings. It's hard dealing with disabled patients. I'm doing that already, having survived day 10 with still no xanex, hydrocodone, Temazepam, Mirtazapine, Amitriptyline, BC Powder, or Risperdal. Nice little cocktail, huh? That's not including the other headache meds my insurance won't cover. This, however, is the beginning of the struggle. My supply is nearly gone.
With treatments being costly, I am thankful for the opportunity to do something greater. I've worked hard to get to this point. I want to make sure I can continue getting stronger and better (and wiser).
Last night I got terribly upset from stress and I suffered a night time fright (night terror). I had to end up sleeping with the light on. I know I'm safe, but sometimes night frights can't be helped. As a patient with not only MS but also PTSD and a few other disorders, I'm thankful that my husband/caretaker is standing by me and not giving up on the dream. I find comfort in that. I took some phonix tears and tincture and soon found myself asleep in a safe zone.
My treatments are now at three times a day. Smoothies have been introduced into our diet, and we are loving the fruit we're drinking. Organic is the way to go.
I hope to be cured of MS one day. I hope to live a "normal" life. Spirit has shown me the path in which to go and faith will see us there. Falling asleep now, I dream of those better days and am ever so thankful for this chance at life.
Monday, July 13, 2015
Saturday, July 11, 2015
I wasn't going to post this but it's important that I tell my MS story completely so that I can continue to help others..
God help me but too many times, I've been down. What I can't do is needy relationships; i'm disabled and I qualify as "needy", if anything. Needy relationships; They are exhausting and cause me to be on medications; most times because of the anxiety it causes. I'm not doing that again.
Needy relationships cause me anxiety and panic. Headaches also occur. See, stress is a huge factor in a MS patient's health. Stress can lead to seizures, organ failure, symptoms, or more. So the stress of stress freaks me out. The stress of a needy relationship can effect other relationships around me,too. And it simply isn't good for "we".
I get that we all long to be loved, supported, understood and accepted. But honestly you can do these things without a lot of physical attention. If your relationship does not allow for a lot of physical ( disabled people, military, prisoners, etc), then you'll have to deal
with someone who can handle being without you. Also I'm afraid of germs, or anything remotely contagious, so.the first sign of cooties has me running away fast. I'm a MS Patient among other things so I require a lot of solitude, which only includes the company of my caretaker husband. " We" have MS. I shouldnt have to keep explaining it so I say it once and thats that. I hate that some people dont value the other aspects of friendship outside of the "me me me" viewpoint. For other relationships, Talking means a lot. Eating meals together is great. Having fun together or sharing in an activity together screams attention and affection. It's when those things are overlooked or underappreciated and they are just not good enough that " needy" comes to mind.
I found this to be true: There are three basic relationship type people—secure, anxious and avoidant. Secure people are warm and loving and most likely were raised by a consistently caring and responsive caregiver. Avoidant people , whom psychologists also call "dismissive," try to minimize closeness and often were raised in an atmosphere where neediness and insecurity weren't tolerated (my environment).
Anxious people are the ones who typically are seen as needy. They worry about whether their partner loves them, and they most likely had parents who were inconsistently nurturing. They often are emotionally overwhelmed Or they might ignore, deny or minimize their needs, and then look to others to fill their emotional void in manipulative or indirect ways. The bible speaks of not being anxious. Wow. Look at GOD.
Eventually, as I knew it would, I've become emotionally overdrawn with the neediness of relationships. As a MS Patient, I'm super scared that they will once again send me to meds. I'm not sure of what to do other than avoid them at all costs. But when you love someone enough, you can try to help them know how to love you. MS doesn't mean we can't be loved, it just means love can't be the stressor.
I found this online: Needy people often accomplish the thing they fear most—they push their friend or partner away. "The anxious person can wear out their partner," says Farmington Hills, Mich., psychologist Carolyn Daitch, author of "Anxious in Love."
People can learn to calm their anxious, needy responses. And their loved ones can learn to understand and set boundaries.
And really that is all you can do. If people can't respect my boundaries then I have to.
In the new healing house, there is no room for needy relationships. I'm gonna send out memo's too. Needy need not apply.