More nerve pain - Trigeminal Neuralgia

My gums made me want to physically pull every tooth I have in my mouth to avoid anymore pain, especially the bottom row. But...this is not a dental issue. It's a nerve issue stemming from my right temple to my lower right jaw throughout my gums. I feel like it's killing me. I've had Bursts of tears so forceful that I feared my head would explode. Loud sobbing and even near screaming. It's horrible. For hours my gums hurt, it hurts and I keep putting ambesol in my mouth, I brush my teeth with a soft brush with organic toothpaste, I take Tylenol, and a heating pad. I even more weed. I'm feel like I'm about to pull my hair out...but I won't because All of this is very temporary.

Trigeminal neuralgia is a kind of nerve pain which can give stabbing or burning sensations down the side of the face, usually on one side only. The pain may only last a few seconds or minutes but may repeat many times during an attack. For some people the face pain is present all the time. Trigeminal neuralgia can be excruciatingly painful.

Trigeminal neuralgia is more common in multiple sclerosis than in the general population and can be confused with dental pain. If you are experiencing these symptoms, you should be assessed to see if it is a symptom of your MS especially before you consider any major dental work. The dentist says it may be MS related.

The pain can be triggered by every day activities such as eating, shaving, talking or by being out in even a light breeze. Noticing any triggers can help you manage the pain by avoiding them where possible. Treatment is usually with a drug called carbamazepine to begin with. If drug treatments are not working, surgery may be an option.

I'm going to call my Dr and/or nurse this morning to see what can be done about this. I'm going to specifically ask about carbamazepine because this is no way to live and I've got to be here. I want to be here. I'm fighting to live. Please support MS awareness.

The story behind my left knee

There's a spot on my skin right above my right knee that itches and burns so bad that I want to dig into my skin. No matter how much I scratch it, or put cool rags on it or whatever I can think to sooth it,  it still continues to itch. But there's nothing there. Doctors cannot find anything wring with it. Well... technically there are nerves there. I have a disease of the central nervous system so anything goes, right?
  It's common for people with MS to experience strange sensations (also known as dysesthesias). Itching is one potential sensory disturbance of MS. It's different from allergic itching because it's not accompanied by a rash or skin irritation. If itching is mild, no treatment is necessary. It also hurts,
  Mine is more than mild, but I choose not to medicate with pharmacy meds for this. I just try not to scratch as much (i rub instead). And I make sure the area is clean, and I pray alot. I have a plan.
  Medical marijuana has been shown to ease the symptoms for those who suffer with neuropathic pain.  Neuropathic pain is a specific type of pain that has usually resulted from irritation or damage to a nerve. Some of these strains are Chem Dawg, Super Silver Haze, Super Silver Sour Diesel Haze,  and AK47 (there are others as well).
  See, things can be treated naturally if you have the money to be able to either grow it or purchase it. It's one's choice on how they choose to medicate. We don't always have to go with what a doctor prescribes if something natural and organic can do the same justice. I live in a state where I can grow six plants or more so I'd like to grow one of these strains if possible. I've tried some of these strains and they do help.

https://mymsaa.org/ms-information/symptoms/pain/

clonazepam

So I'm now on Clonazepam instead of xanax.  The side effect i'm concerned about is that Some people have thoughts about suicide when taking seizure medication. UGH, I mean....I'm already depressed enough. I am not suicidal but lord knows i don't like living like this....so what is this pill gonna do exactly to make me wanna end it all?  Ugh, whatever.  I'm keeping myself in my prayers. 

She says it's for anxiety.  

And prazosin that I take at night should keep the nightmares away she said.

And the prozac in the mornings. This is too dayum much.

I'm taking cannabis for pain because i refuse to keep taking a gazillion pills. I just wanna come out of this.  But this is the only way to keep the thoughts from taking over.  

June Gives Me Love Once Again

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

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

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

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

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

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

The Broken Promise

I couldn't do it.   Last night I could not take the Gabapentin.   I made a promise that I really shouldn't have made because I'm too paranoid about this medication.   I read so many testimonies about how you're not supposed to stop taking the medication suddenly and the effects that you will have if you do.   That sounds like a lifetime commitment.   And most of the side effects that people complain about is something I just don't want to have to deal with in my life; I've dealt with too much already.  

I'm going to have to talk with the doctor a little bit longer before I can be on the same page with her about medication.   I'm not trying to go against doctor's orders but at the same time I'm not trying to take something experimental.   Gabapentin isn't even for multiple sclerosis.   I have not found a medication that will stop the multiple sclerosis from attacking my body Point Blank Period.   It's not fair to expect someone to take things that's going to prohibit them from having a longer life.   A  classmate of mine who is a physician told me about a surgery that is being done that is ridding people of Multiple Sclerosis,  however I cannot find anything stating for certain that Multiple Sclerosis can be cured and therefore I'm not going under the knife.  

I know that for me even being off Xanax continuously has been a blessing.  Looking at its side effects doesn't help anything either there's a whole list where that comes from.   So really I don't know what medication I should be taking.   If the doctors are going to prescribe things with so many side effects and instill so much fear inside of me, I'm not going to be able to relax at all.   I do pretty good with cannabis it has taken me off of everything else and it doesn't have those side effects.   I'm still researching.

Concerns about Gabapentin

Dr. Sheldon reiterated that I needed to take the Gabapentin medication that I've been prescribed. I’ve heard many times before at office visits that this prescribed the drug for me would be ultimately helpful.  I was first prescribed Gabapentin in Atlanta Georgia and I have a lot of the bottles because every time they put me on pills I pretty much start getting paranoid when I read all of the side effects.

Well I promised Dr.  Shelton in front of Mallory that I would take these pills and I will try to remember to take them so that they can work.  Last night I took the dose as promised.  Dr. Sheldon says that I can take Gabapentin with Elavi (my depression medication)l and she feels that if I take the Xanax I only need to do so in extreme cases. She wants me off of Zanex.  Last night I took Gabapentin and Elavil so that I can go to sleep.  I already have problems going to sleep with the phobias that I suffered with on my way to sleep and as  I started to doze off I began to become frantic in my mind. I kept thinking that I was about to die I kept clinging to my husband so that at least be i’d be with him if I slipped off (passed away) because it really didn't feel good.  He was sleep, and I was having a full fledge SEVERE panic attack.  At one point I felt like I couldn’t breath, but then I just succumbed to the medicine. This  morning I was happy to be alive.

My mind was on the conflicted discussion I had the other day.  It was pretty intense. Whoever I was during that whole fiasco isn’t who I want to be.  Typically  I never really speak like that anymore, so it troubles me.  Then I decided to look up the effects of Gabapentin.  I'm reading this blog http://www.peoplespharmacy.com/2012/05/26/gabapentin-side-effects/  and I Became extremely worried. The people on the blog said that Gabapentin is addictive they also said that the side effects are horrible as I read the side effects I began to notice some of the things that we're going on in my life since I've been taking Gabapentin. I've had severe constipation and so have other again Gabapentin uses I've had  my temper being really short fused  just like other Gabapentin users. AND so forth. I’m in no way trying to be difficult, but I’m really scared of this even though Dr. Sheldon said it’s not harmful.

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. :)

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.

Eat Me

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.

Day 9

Day 9 and no pharmacy meds. I'm staying focused and trying to have no distractions.

Yesterday for the first time in my life, I went mountain climbing at the Mountains Of The GODs. Just eleven years ago I couldn't even walk! I've got so much to be grateful and thankful for. Choosing to get and remain healthy is the best thing I can do for my family; my Tribe. My health is our wealth. All of ours, really.

Day 9 didn't come easy. Every single day is a challenge. Every day I have an instant of panic but instead of going for the pills I just relax and let the new treatment have time to work. And it's working. The hardest part is being strong enough to say no to stress from loved ones. But I'm focused and committed to life.

I still experience slight MS issues; not being able to walk straight, nausea, intense head pain, attention/concentration issues, motor skills issues, giving out of breath easily, problems going up and down stairs, spasticity, and cognitive issues. My pain has decreased, and my mental issues have lessened (panic, depression,etc is getting better as well as PTSD). I'm still in a controlled environment (stress causes the majority of the problems MS patients have ), but one that is precisely for MS patients and fostor animals...no room for distractions. Unfortunately we can't care for everyone but we are doing the best we can. From the Holy House to The Healing House. Spirit is with us.

The treatment I'm taking is not acceptable everywhere. We are still in an era where there is doubt and opposition. There is still so little known about it due to strict laws making it hard for people to open up about it and share information. However there is a plethoria of information surfacing on the internet, even in this blog. So many stereotypes crush down the hope for true healthy living, but truths like mine and the many patients with safe access can crush those steriotypes. My healing is coming from GOD, and I will continue to tell my story so that others are helped.

This is not free. Next month it will cost a little over $1250 to be here and that does not cover diet or treatments. In my heart I know I can't go back to my old treatments. I wasnt living a quality life at all. My treatments, my enviornment, and other things were slowly killing me. Most doctors will agree that pharmsudicals don't care about healing; they care about money. There is no money in cures but there is in disease. I hope people do care to help me fund finding a cure for my disease. I'm 9 days on no meds but if I have to leave here I won't have access to it. I just want a chance.

So 9 days...this will be the 9th of cannabis. Tincture, lots of water, rest and relaxation, excercize, mostly organic non gmo diet, beautiful nature, and Phoenix tears have helped me drastically.  You dont have to only smoke to get the benefits from cannabis, and I'm proving that. There are other options. I'm not "high" all day and my body benefits to the point I can be off pills. This is amazing. For this, I'm filled with hope and gratitude.

The symptoms i'm experiencing at this moment are that I have a neck cramp in the base of my skull, a headache, and bowel/bladder/digestive issues. Last night I had muscle spasms. We are determining how the treatments help and which treatments help what symptoms.  Charting/blogging everything helps us to know if we are on the right track. If im cured, everyone will. Everyones MS is different but i'm looking for the cure for us all. Cancer patients are even being helped with this treatment as well as traumatic brain injury, diabetes, and more.

I thank everyone for their prayers and ask that everyone supports my efforts in my Write 4 MS Awareness funding project. As I write my story I will also write yours :). Any financial assistance would be be beneficial. Please spread the word.