Living With MS....MY WAY

I thought I was going to get myself together when I wrote “MS you can’t keep a good person down” and “Honey you are a Junkie” in June 2007. All I did was trade in the numerous prescription I was taking daily and as needed for a more dangerous and potent drug. My reflection was the best thing to happen to me in 2008.

I still live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia. Hell, living with MS I never knew which ailment was going to afflict me, or when it was going to happen. I still do not know today because MS is a predator that I cannot control, but I can control how I allow it to affect my life.
Too many times, I allowed MS to put me in a depress state, for too long I taken drugs regularly to keep symptoms away. Allowing MS to dictate my mood and what I put in my body is what will cause my DEATH. The aforementioned is my reality of living with MS.

I realized if I could live through withdraw symptoms of Fentanyl, I can live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia without popping a pill or capsule everyday to keep the symptoms away. I am no idiot; I will take medication, as I need it. I am proud of myself because I have been strong enough not reach for a pill or capsule when MS take me for a ride with one or more of my symptoms. I am proud of the fact I need to have new prescriptions written for the MS symptoms that plagues me when I go see me Neurologist February 17…yes, it has been that long since I taken what I call my as needed drugs.

I have come a long way, the only drugs, I take on a daily basis are my Copaxone injection and Cymbalta. I would not be taking Cymbalta if I had a severe case of anxiety recently. My anxiety is better and I contribute that to Cymbalta, therefore, I will continue taking my Cymbalta on a daily basis. I never want to experience the type of anxiety I just overcame in my life.

Living with MS my way may not work for others, but damn sure works for me.

Reflection

MS’ers , non MS’ers, and readers who commented and emailed me expressing concern in reference to my unfinished post June 17…THANK YOU for caring about my well being.

When it rains it pours, I had been through a storm when I decided to stop taking

The Duragesic (Fentanyl transdermal system) patch is a powerful opioid pain medication for moderate to severe chronic pain. Duragesic is also a DEA Schedule II narcotic and prescriptions require a DEA Order Form. Fentanyl has an analgesic potency of about 80 times that of morphine, it is generally prescribed for long-lasting relief from intense, persistent, and chronic pain when pain needs to be controlled 24/7.

I have been suffering with chronic pain since 1987 and I probably taken every prescription pain medication known to man. In the beginning of living with pain, Tylenol and Ibuprofen worked for years. When my body became immune to the 3000mg a day of Tylenol and 3200 mg a day of Ibuprofen, I was prescribed Percocets, Darvocets, Lortab, Vicodin, Ultram. Hell, you name a pain medication I more than likely have taken it. Unfortunately, I could not function taking the prescribed pain medication, I also did not want to become addicted. However, I need something to control my pain to have a life. My neurologist finally suggest that I take Fentanyl because it was a patch that would release medication in my system 24/7.

When I first put on a Fentanyl patch the dosage was too strong, but once the dosage was decrease I was euphoric. Fentanyl had me feeling GOOD, I had absolutely no pain. I was able to function...I had a life. Over time, I start noticing my heart skipping beats and my breathing becoming very shallow as I slept and I know it was God's grace that woke me from my sleep each time it happened. I also noticed that my mood was becoming erratic. Yet, I refused to believe Fentanyl was the cause of my dark depression, heart palpitation, and breathing issues.

As in the past with other medication, my new best friend Fentanyl turned on me. I did not want to believe Fentanyl was causing the dark depressing that was creeping inside of me in April. I blamed it on multiple sclerosis; because MS’ers experience depression now and then, but deep down I knew it was not MS depression. Once that dark depression manifested, I knew I had to make a decision to continue or discontinue wearing the Fentanyl patch, I began fearing I could die in my sleep wearing the Fentanyl patch or do something crazy. I finally made that decision to stop taking Fentanyl and what a ride it was. I had no idea I should have weaned myself off of Fentanyl instead of abruptly stopping.

By the grace of God I made it through. I experienced severe nausea, the feeling of creepy crawling bugs over my body, goose flesh/bumps, and severe chills for four straight days. By the fifth day, I called called to have myself committed into a hospital for drug addiction withdrawal once I realized that was my problem. I was told there would be no need for me to come because I went through the worse of the withdrawal symptoms and I should start feeling better.

The nurse was right because i start feeling better, the symptoms subsided and I could tell I was on the road of recovery.

I know I did the right thing stopping the flow of morphine in my body.

Nerve Pain Is Different

In the beginning it was hard for me to distinguish my pain because I experience pain in the joints, muscle, and nerves. All I knew was I was in pain and I wanted it to stop. Now that I know how to distinguish my pain, I know what pain medication works for me which is Cymbalta for my nerve pain and the Duragesic patch for my joint and muscle pain.

The following is an article from the National Multiple Sclerosis Society Mid South Chapter newsletter called the Connection. It is about nerve pain and I can vouch for Cymbalta when it comes to nerve pain it is also an anti-depressant. That’s one capsule that attacks two symptoms of MS and I highly recommend it over Neurontin. Why take three Neurontins a day that only helps with nerve pain when you can take one Cymbalta that helps with nerve pain and depression?

All pain is transmitted by nerves, but nerve pain is different. "Phantom limb pain" is a vivid example of "neuropathic" or nerve pain. This type of pain originates in the central nervous system in injured nerve pathways, not in the bones or muscles. A person with phantom limb pain feels pain in a body part that was amputated in the past.

MS lesions can injure nerve pathways and produce neuropathic pain - or unpleasant sensations called dysethesias (or "di-es-THESE-ee-ahs"). The burning, aching, stabbing, prickling, or itching may start and stop or drag on. MS lesions may also cause "allodynia" (Al-oh-DIN-ee-ah") - which is pain from something that shouldn't be painful. A soft touch, the weight of bed covers; even a cool breeze can be the trigger.

Neuropathic pain is not soothed by the over-the-counter medications that work on muscle pain. Even powerful prescription medications such as Percocet, Lortab, Oxycontin, or Darvocet are not effective for this kind of pain.

Instead, physicians need to prescribe medications that work on nerves. They may be anti-convulsants (such as Tegretol, Dilantin, or Neurontin), antidepressants (such as Elavil), or new drugs approved for diabetic pain (such as Lyrica or Cymbalta). It's not uncommon to try out several drugs to find what works best.

I Had To Tell

My nausea and vomiting became so severe; I had to tell before my next doctor's appointment. Puking out of my nose and mouth at the same time with my ear drums feeling as if they were going to burst is reason enough to tell. I was told to immediately take off the patch. The patch took my pain and tingles away, but the side effects were not going to get any better because they became severe in my third week. Now I have to wait and find out what medication my doctor can give me for my ms pain. I hope I have enough morphine in my system before the severe pain return.

My Week On The Patch

I was very skeptical of the morphine patch Duragesic 25mcg because all I could envision is me drooling from the mouth and nodding in and out of conscious. When mild painkillers stop working to stop my pain, I was prescribed several addictive type pain killers such as Percocet and Lortab 10mg. I could not tolerate Percocet, but I could tolerate Lortab 10mg. To not become dependent daily on Lortab I only would take them when my pain level was past a 10 according to the medical pain chart. When my pain is not past a 10 I do not take Lortab. With my recent episode of sever pain Lortab did not give me any relief, therefore I was prescribed morphine patches.

To my surprise I did not drool, but I did nod in and out of conscious. My nodding in and out was not like I envision, it mainly happened when I was not busy. The first day on the patch I felt like a brand new woman, I felt like I was normal, I had absolutely no pain, I felt like the vigorous woman I was before I became sick. I embrace that day feeling like I could conquer the world. Then reality hit me, I became concern about becoming dependent on the patch, I quickly dismissed the reality of being dependent on the patch as long as I continued to feel the way I was feeling.

I experienced nausea, vomiting, itching and sleepiness on my second day wearing the patch. I became a little depress because I thought about how good I felt the day before. I did not stay depress long, I knew there were side effects and I just prayed the side effects did not last long or become so bothersome to the point I had to take the patch off. I took Meclizine 25mg and Hydroxyzine HCL 25mg for the nausea, vomiting, and itching. Although I experienced all of that on my second day I still felt great because I was PAIN FREE for two days in the row. In my mind I could live with the nausea, vomiting and itching as long as I did not have PAIN. Fortunately, the prescriptions I took to combat the nausea, vomiting, and itching worked and I no longer felt those symptoms.

I went seven days without having any PAIN, therefore, in my book the patch work if you suffer with severe pain. In my opinion the downside of using the patch is your body is continually receiving morphine 24/7. My husband brought something to my attention, he said, “Although, you are feeling good by not having any pain and you are functioning, you have drugs in your system that can cause you to nod off. You need to have a driver because you can nod off while driving.” We debated the issue and I realized he was right. I also realized I couldn’t continue to wear the patch daily like my doctors prescribed it. I had to treat the patch like I treat the medications I have that can become addictive. I only take certain medications the doctors prescribed to combat the symptoms of my multiple sclerosis on an as needed basis.

As of today I took the patch off. The severe pain I experienced the past several weeks is gone. I am no fool to think my pain will not return because I have been living with constant pain everyday for years. My body built a tolerance level to pain and I learned how to live with that. I have witnessed friends of mine who live with pain, but they are totally dependent on addictive medication to the point were they actually have no life. I on the other hand have a life that I enjoy and I cannot be dependent on addictive medication to continue the life I live.

I now know when the severe pain I suffered in the last several weeks returns I have something to take for it. I guess I will know in the coming days if the patch will become a permanent fixture in my life or a temporary fix when I need it. I pray it will be for a temporary fix.

The MS Wave

July 10
My pain has been off the charts for days and it was becoming debilitating and no medication I have is working. I have a Texas trip coming up and I am feeling like shit. It gets depressing and scary when multiple sclerosis exacerbate because you begin to wonder how long it's going to last.
Pain Pain Go Away…

July 11
I Woke up telling my husband I wouldn’t be able to go with him to Texas if my Solu-Medrol infusion didn’t make me feel better. It’s moments like this when I get pissed off with multiple sclerosis. It is also moments like this when I realize how much my husband really loves me. He told me, “If we have to wait another day to leave then that is what we will do because he meant it when he said in sickness and health”. The Solu-Medrol kicked in 30 minutes into the infusion. I am relieved and ecstatic knowing I am able to join my husband in Texas. I feel so damn good after weeks of intense pain I am going to the salon for a manicure and pedicure.

July 12
Texas here we come! The drive gave me a chance to start reading, “The Five People You Meet in Heaven" , by Mitch Albom. We never go straight to Texas without visiting some good friends in Scott Louisiana. Also, a must have food from Louisiana are deboned stuffed chickens from Hebert's Specialty Meats. Going for a long drive with the one you love make you feel like the luckiest person in the world.

July 13
Before we got started on the activities of the family reunion that evening, we went grocery shopping for the must have foods from Texas to bring back with us to Tennessee. We never can leave Texas without bringing back boudin, blue crabs, zummo sausage, Broussard's links, and seasoning from Tex Joy. Unfortunately, for me the heat index rose to 108 degrees and I was starting to feel the nerve tingles and pain through out my body. I silently prayed over and over for the Solu-Medrol to continue to work, normally I receive three consecutive days of Solu-Medrol, but I only had one.

I made it to the first function of the family reunion that evening; “The Fish Fry” Texans know they can cook...that was the best tasting fish I ever tasted at a fish fry. My pain and the nerve tingles accompany with the feeling of nausea were starting to intensify the Lortabs helped some, but I couldn’t wait for the night to end.

July 14
I was determined not to let how I feel ruin our time in Texas. Multiple Sclerosis is part of me and I choose not to let IT control me. Lately MS been rearing its ugly head with a vengeance, but I am going to adjust to this new wave like I adjusted to the waves that has lead up to this moment. I opted out on the morning activity for the family reunion in order to join everyone during the evening activity. People would not know I have MS by looking at me because on the outside I look like the picture of health. Looks are deceiving and I no longer care what people think when I have adjust my game plan to enjoy my life and do the things I love to do.

July 15
I am proud of myself because I was able to enjoy everyone during the family reunion festivities with only my husband and sister-in-law knowing how bad I was feeling. The only reason my sister-in-law knew I was going through changes is because I needed her help when the nausea I have been feeling finally erupted in a violent way. We were staying at my sister and brother-in-law home after visiting some friends I told my husband I needed to go back to the house, but he didn’t have to stay with me. Texas is his hometown and I knew he had a lot of catching up to do with friends and family.

July 16
I felt a little better after the nausea feeling went away, but the pain and tingling stuck around. I knew I had to make an appointment with my neurologist because of this new wave of intense pain. I was also glad I was going to be leaving the next day because there is no place like home especially if you are not feeling well. I lounged around and I finished reading my book. I also made the decision to pull back on being an activist in my community. A good friend of mine in Texas reminded me I cannot save everyone in need or trouble and I must learn to pick and choose because of my illness.

I believe my entire purpose for making it to Texas was to have the conversation I had with him. On the road trip going to Texas I had a call from a reporter, a cop, and a dear friend who is in a crisis. The reporter is not in a crisis, but the cop is. If the information I received from the cop is accurate his problem will be solved if he handles it the way it needs to be handled. Because of my own issues with the new wave of pain from MS I informed him he will be okay now that he have a lawyer and I can no longer carry his stress, I did all I could do it is now up to him. I basically told my good friend the same thing.

July 17
The skies burst wide opened in Texas and Louisiana and safety come first. We decided to wait until the next day to leave.

July 18
There is no place like home!

July 19
I called my neurologist about my symptoms and the intense pain. I have an appointment for Friday now all I can do is try to unpack our bags and put away all the food we brought back to take my mind off the pain.

July 20
Just as I suspected my illness is progressing, I know the daily Copaxone injections I take daily slows the progression of MS not stop it. I am not in denial on what MS do, I just HATE there is no cure for it. My only resource is to try the various medical treatments they have for MS to live as normal of a life as possible. My Neurologist suggested that I try Tysabri, I wrote a post about that once. I wish I still had it, but theunexpected happened . Until I make my mind up about Tysabri or any other new treatment over Copaxone I have to continue MY research on the different treatments available to me. To help combat the intensified pain I was prescribed morphine patches to wear and told to take Lortab for the breakthrough pain.

I am a little leery of morphine patches, but if it takes away the pain I am experiencing now I am willing to try it. I guess I will have a lot to talk about in the upcoming days. I hope my you tube question is selected during CNN presidential debate. I will talk about that later because its time for me to take my shot.

I Am Tired I Want To Give Up...My Fate Is In God's Hands Today

I am struggling with MS depression and I am trying to fight with all I have today. It also does not help living with severe MS pain daily. I am contemplating suicide at this moment. I taken
Xanax,Lortab 10/500 mg , and Ambien 10mg hoping I never wake up. If I do wake up from my drug cocktail, I have beside me a 25 caliber handgun to blow my brains out. Why didn't God take me when methotrexate went toxic in my body June 2006?


I put the cold steel to my temple with my hand on the trigger, but I prefer to go by going to sleep. If I wake up from my cocktail and still feel this overwhelming depression I pray I am thinking somewhat rationally and not pull that trigger.

I am tired of life; I am tired of living with this unpredictable disease. I have comfort in knowing my job has been fulfilled raising my daughters to be independent young ladies. Hell, I use to think I wouldn’t see them grow into the young ladies they are today. I hope they will understand why I want to end it today and pray if I am successful in my attempt they do not blame themselves. I know this is the cowards way out, but the fight in me is slowly disintegrating. I had to be strong for people all of my life, but I feel very weak right now. I have become a prisoner in my own home because of the heat.

I am tired of fighting for people who do not want to get off their asses and make a difference, I am tired of the hate in this world, and I am tired of giving myself daily painful injections to control the spread of lesions in my brain. I am also tired of all the medication I have to take, I am tired of the pain, I am tired of the numbness, I am tired of the nausea, I am tired of the eye problems, I am tired of the tingling, I am tired of being the person that have to put on a brave smile regardless of how I feel, I am tired of feeling dependent on others when I am experiencing depilating symptoms of multiple sclerosis, I am tired of feeling as if I am a burden on my family, I am tired of the unpredictable symptoms of multiple sclerosis I live with everyday, and most of all I am tired of witnessing how fucked up our country is...a dynasty that will fall like all other dynasties in the world.

I lived my life in a way any parent would be proud of their child for and I always treated people how I would like to be treated. Yet I feel I am always bumping my head on a brick wall battling my illness, pleasing others and fighting for what is right. When will enough be enough, today, tomorrow, next week, next month , or next year.


I pray that I am forgiven because what I am doing to myself at this moment is a sin and I pray God forgive me. I also pray that my Mother, Father, Sisters, Brothers, Husband, and Children forgive me. What I am feeling today is more than my heart and body can handle and I have no more strength to be positive today. Ending it may give me the peace I seek. I am having trouble being positive for myself today. I don’t know if this will be my last post, only God knows if I will be successful in my attempt to end it all today. Only God knows if he is ready for me now to pass on.

My Day Was A Beautiful Day

The only downside to my day was not having my youngest daughter present, she now lives in Nashville. If I could have one birthday wish come true next year it is to have my baby living near me again. Receiving gifts and flowers are great, but the cards I receive from my family and friends’ expressing how they feel about me is
what keeps me going in my daily struggle.

My pain was bearable on my day and I was definitely thankful. Unfortunately, I am paying the price today the pain in my shoulders, arms, fingers and feet is making it difficult to type and concentrate. It is time to take another Lortab 10/500mg and if you know me, you know for me to down Lortabs every 4 hours to the hour IT'S BAD. Hell the pain is so bad I AM going to take a shot of Jose Cuervo and call it a day.