Fight The Symptoms MS Throw At You

I AM BLESSED
click the title and hear why I am BLESSED

Thanks for the well wishes by email. For those who have been reading my blog for a while you know I do not get religious on you because I do not believe in pushing my faith on others. We each have to answer for our self when that time comes.

However, I am shouting it today I Thank GOD for BLESSING me. It is no secret for us who live with multiple sclerosis that it is a terrible illness, but I am thankful for what living with multiple sclerosis has brought to my life. Hmmm, I bet some of you are asking yourself, “WHY”...Let me tell you why.


There was a time when the pains I live with daily intensified to the point were I was ready to take my life. During the last several weeks, I have been living with so much pain that would bring an elephant to its knees. The pain was in my entire body, but it magnified in certain areas. This may sound crazy, but I felt as if I was at war with good and evil. Ummm, let me explain myself before you all think I am nuts.

Some of you know I have not let my disability keep me from fighting injustices and being involved to empower our youth. Thankfully, I had not had to fight any injustices lately, since I have been successful in unseating our last Mayor to bring about change in my community. I have been busy with a non-profit in bringing a program for the underserved (I will talk more about that on another post) and working with the Kiwanis (which I am a member). Out of nowhere the pain, I was use to on a daily basis start intensifying; it was becoming difficult to move. I would wake up stiffer than the Tin Man from Wizard of Oz. MS is a mean SOB; it is as if when you try to continue to have a life, it throws one or more of the many symptoms your way. It does that because it wants you to lie in bed all day and feel sorry for yourself. I REFUSED to do that once I went through my grieving period after my initial diagnosis. I witness too many MSers give up on life and they are now in a wheel chair or in a nursing home.

The fight was on these pass several weeks, I oiled myself up by thinking positive when I woke up. I made myself get out of bed; I made myself make it to meeting for the causes I was working on this summer. The good out of this was the people I was working with never knew the difference. I did not have to go around them when I was too stiff to move, I made up for that by doing what I could from home. It was the fight of pushing on is why I am back to blogging. The evil of the pass several weeks was how my MS PAIN tried to take me down. I am going to try to draw a mental picture. Pain exploded through out my body like a nuclear bomb and while one nuclear bomb went off in my body another localized in three of my right fingers making that area worse. I am right handed and it was so bad, if I was not in my right mind I probably would have cut my fingers off, because I kept moving PAIN deciding to explode another nuclear bomb in my head. I was tempted to put on a morphine patch (yes, although I kicked the morphine, I did not throw out my last refill), because I am bless, I did not put on a patch. To get some relief, I down a couple of Lortab 10mg a day, which is not bad because you know we can take up to six a day. I did not want to go back to dependency of Morphine, although by using morphine I do not feel PAIN. I could not go back to it because I know it was slowing killing me (causing problems with my heart).

I vowed the last time PAIN drove me to the point of taking my life, I would never allow PAIN to do that to me again. I am blessed because I did not once THINK about going there. I am blessed because I did not give into pain and start taking morphine again, finally I am blessed because the program for underserved children started September 12 and I was able to do my volunteer duty with the Kiwanis where hundreds of young children have ID’s with COMEC if (God forbid) they become missing.


It is not over until God says it is over keep fighting and praying while living with Multiple Sclerosis or any other chronic illness.

Vitamin D Deficiency

I finally had my Vitamin D level checked and to my surprise, I am severely deficient in Vitamin D. The reference range for Vitamin D in the body is 32 – 100. Hell, my range was a 9, I was damn near depleted of Vitamin D.

A cousin of mine who is in the health nutrition industry brought the importance of Vitamin D in our system and the importance of African Americans to have their level check to my attention about a year ago. The reason being African Americans do not absorb the sun natural resource of vitamin D. She also mentioned, a lot of the pain I experience could not only be from multiple sclerosis, but also from the lack of Vitamin D.

My MS rollercoaster has been taking me for a ride. It was time to find out if there was something to this Vitamin D after reading about it. I did not have nothing to lose if I had to take another pill and if taking pills for Vitamin would help my cause living life with MS. I was all for it.

When my results came in, my doctor immediately but me on 50,000 ui of vitamin D a week, I thought I was going to have to take a handful of pills to get that much vitamin D a week. Fortunately, our good ole pharmaceutical companies make a 50,000 capsule and I take one a week.

It has been four weeks now and I have to admit I feel a lot better. I am experiencing moderate instead of severe pain now. That severe anxiety I experienced that damn near drove me insane has disappeared. Cymbalta helps, but I notice a tremendous difference since I have been taking vitamin D.

Although it is wise for African Americans to get their Vitamin D checked, I would suggest everyone who have health problems to have their Vitamin D checked. The medical community is doing more research about the harm of having a vitamin D deficiency. Instead of trying to blog about the different ways a lack of vitamin D can effect your life…check it out in your spare time on the provided links below.

Vitamin D Deficiency

Vitamin D Deficiency Symptoms

Vitamin D and Mental Illness

Why Vitamin D May Be A Hidden Epidemic

Vitamin D May Prevent Multiple Sclerosis

What a Pain !

After such a good day Thursday(considering I was at the hospital with a needle in my back)
Friday was a mess . Around 2:00 in the afternoon at work I started feeling pain in my hand were they took the blood sample , then it spread to my back, and then to my sore foot.It was like a circuit, back and forth , pulsing pain. I felt sick to my stomach. I closed my eyes and sat there trying to keep myself from crying. Luckily, about five minutes later my son called and said he was downtown and would meet me at work around 3:00 . There was hardly anybody around the office so I was able to leave early. Thank goodness my son did show up because I would have had a hard time getting home alone. When we got home we had dinner but I wasn't very hungry . I made some tea and flopped on the couch . I was hurting so bad . I was miserable. I tried to cheer myself up with a Kit Kat chocolate bar and more tea. It helped a little.

My evening was spent watching t.v., the news and a movie I've seen about ten times . I didn't care, I was too wasted to care. Finally around 10:00 I gave up. I took a sleeping pill , something I haven't done for awhile and went to bed. The pill helped, it knocked me out and amazingly the next morning I woke up with no pain .
I don't get it. My foot hadn't really hurt the past two weeks. I had trouble walking due to the swelling and it was sore, my hand was a bit sore and so was my back, but no sharp awful pain like I felt Friday.

Now today I'm feeling just a bit sore again. No pain. I have no clue what's going on with me . I was a miserable rotten lump and now I'm O.K. not fabulous just O.K

Split In Half

Daughter: “Mom are you okay.”

Me: “Yes, I am okay why you ask.”

Daughter: “You do not look well and you are walking funny.”

Me: “To be honest, I feel as if I am split in half.” “I have been trying to ignore I am having problems with my right leg, but now the entire right side of my body feels different from my left.”
My daughter looks at me very hard then she says, “You know the right side of your face does look weaker than the left.” I gasp, “You are kidding me” with a straight face she said, “No I am not, that is why I asked if you are okay because you looked off to me today and you are moving around the house like you are okay, but I can tell you are not. Sit down and tell me what needs to be done, I will take care of it.”

A relief came over me because I could now tell my family how I have been feeling since we been home from Texas. I been going acting like all is well, but deep down I knew my body was going through changes. I came home from Texas anxious to get back to blogging and visiting my virtual MS blogging buddies site and my other favorite non MS blog sites that I push what was going on with my body out of my mind.

When I was in Texas during the first two weeks in July, I blamed Texas HEAT and HUMIDITY on the new affliction my body was experiencing. Not only did I have to deal with a summer cold that flared my MS, I quietly suffered with a debilitating pain that hit me in on my right side. When I would step on my right leg, a lightening bolt pain would hit me directly in the small of my back on the right side and forcibly radiate down my right leg that knocked me off balance. I could not walk, I tried to take a step again and the same thing happened. Instead of alarming my family I tearfully went to bed and prayed to God, “Please do not let MS rob me of my mobility NOW, not NOW with all that is going on with “E” he would not be able to handle this NOW. I am aware of what MS can take from me, but this is not the time. Please take what is afflicting my body right now away and while you are at it take this cold with you.”

I could not reveal what was happening to me because my family was grieving the lost of Moma Nora. I was able to hide what was happening because everyone already knew I was feeling bad from my summer cold. Fortunately, my prayer was answered the temporary lost of the use of my right leg was brief. I was happy to leave the Texas HEAT and HUMIDTY behind, but a heat wave was waiting for me when we returned to Tennessee. My summer cold and MS flare was better when I returned home and I did not experience that new affliction I experienced in Texas. I thought to myself, “It must have been the heat that caused the right side of my body to do what it did in Texas.”

Sadly, that was not the case. I cannot get angry that the new affliction my body was feeling returned because at the end of the day my prayer was answered God took it away while I was in Texas. I tried to go about my day by ignoring how painful and weak the right side of my body felt. I literally felt like two people and I still feel that way as I type this blog post. The left side of my body feels normal, I cannot say the same for my right side...imagine this:

On the right side of my body I have a headache, my eye feels lazy, my arm have a lightning bolt pain striking me above my elbow, and my back have radiating pain shooting through it. My hip has a standing sharp pain in the joint that connects my hip and leg bone, and to make matters worse, my leg feels numb as if it is being weighed down by a ton of bricks.

I start feeling this way on the third day upon my returned from Texas, I thought if I was still wearing the Fentanyl patch I probably would not be feeling none of this. That is what I LOVED about the Fentanyl patch, I did not felt ANYTHING, and I was PAIN FREE. I have been tempted to call my doctor for a prescription, but instead I have been taking Lortab 10mg to get some relief from the pain when I could no longer tolerate it.

If the networks ever have a game show on who could tolerate pain the longest before taking something for it I would probably win.

I went to see my neurologist yesterday and I am scheduled to have a MRI Tuesday of my C-Spine and T-Spine to check and see if I developed lesions on the spine. I am optimistic that my MRI will be negative and I am mentally prepared to accept the worse case scenario.

I am holding on to the belief it is the HEAT that is causing my body to temporarily split in half and the two sides will unite in harmony once this heat wave is over.

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.

My Life Living With MS

A fascinating MS blogger asked me the following, “what pain are you having with your MS”. Instead of answering her question in the comment section, I decided to answer it as a blog post.

I would not wish the kind of Pain I live with everyday on my worse enemy. My pain affects me from the top of my head to the bottom of my feet. Having Multiple Sclerosis definitely sucks, if I had a choice I rather live with all the other symptoms of MS than to live with the PAIN everyday. Unfortunately, for me PAIN is the symptom from MS that classified me disable.

Each day is different when it comes to my PAIN I never know which pain will rear its head. I suffer with neurological, severe muscle, and joint pain. For the past 7 months, I have been wearing a morphine patch 24 hours a day 7 days a week and I still feel pain. The difference is my pain is on a scale of five out ten wearing my patch. Yes, that is bad enough for me to take my Lortab daily, but I choose not because I cannot function on Lortab.

When my pain is neurological, every nerve in my body is affected and I literally cannot move. When my pain is my muscles, it feels like a Charlie horse magnified by 100. When it is in my joints, I feel like the Tin Man in major need of oil. I feel it all...aching, burning sensations, stabbing, pins and needles. Regardless, of the three different pains that will visit me daily and no telling which body part, I will not take Lortab to help the morphine. When I first start taking morphine I felt no pain, I was given Lortab for breakthrough pain, I had no idea my pain would start breaking through a month of being on the patch. I have no choice but to take Lortab when my neurological, muscle and joint pain visit together affecting me from my head to my toes...which is a living hell when it happens. My only hope is they do not visit me together more than three days. I thought it was depression that wanted me to do this, come to find out from my doctor after seeking help for my lapse in judgement, living with the kind of PAIN I have is what causes my depression (although MS causes depression) PAIN can and will push a person over the edge.

I was given the option to increase the dosage of my morphine patch, but the morphine patch has already elevated a heart enzymes, huh I go see a cardiologist about that this coming Tuesday. No matter what the outcome, I cannot stop taking something for my PAIN because if I did I would try to do what I did in July of last year. I am in a catch 22 the medication is slowing killing me, but without the medication to control my PAIN somewhat I would kill myself to make it stop. Just typing that last sentence is the last thing I would want to do. I know my death is going to be from medication because there have been many days my heart felt as if it was going to stop.


Please do not let what I am saying stop you from taking whatever medication that are out there to help you with your symptoms because I am grateful for the medication. I am grateful that medication is giving me the opportunity to live somewhat of a life, to be here as long as I can with my family, and to make a difference to others with what I do and how I live my life.

What Is Multiple Sclerosis

Recently someone said to me, "I didn't know black people could get multiple sclerosis". I looked at that person with a WTF look on my face wondering where the hell they have been living. Then I realized many African Americans are not aware of multiple sclerosis. My first response was multiple sclerosis doesn’t discriminate and I went on to explain how multiple sclerosis affects the body. To make a long story short the individual was concern enough to make an appointment with a neurologist to rule out MS when she recognized herself with my story of my journey finding out I had multiple sclerosis.

Here is an excellent visualization explaining multiple sclerosis. It mentioned numbness and tingling, but forgot to mentioned the PAIN multiple sclerosis can cause.

Music Is Good For The Soul

Like clock work every morning when I was a young girl waking up in the morning for school, the first song played on the radio station. God works in mysterious ways; little did I know the first song would have such a profound meaning to me today at this very moment. The second song was my anthem when I was in a terrible first marriage. It brought me through the darkest moments in my life and it will bring me through the darkest moments of multiple sclerosis.

I know longer ask why me for being stricken with multiple sclerosis. I accepted my faith and I try to live the most productive life I can, but it just seems as if there is a force that try to keep you down. That force for me is PAIN, every time I think I have conquered or found a remedy to help me with my PAIN it rears it's head in another direction.

I promised myself when I allowed PAIN to get the best of me in July I would NEVER EVER get that desperate to rid myself of PAIN. Therefore, this PAIN in my HEAD that is whipping my a** step back because I will not allow you to get the best of me. Because...

Jesus Is The Best Thing
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And

I Will Survive
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Side personal message to this second video.

Ladies and men (if it applies)...listen carefully to the words in "I Will Survive" if you are in an unfulfilling, abusive relationship this song will eventually get through to you. It will give you the strength to move on and it is best to move on while you still have love in your heart. If you have children don't waste it on someone because of the children, you will be doing them more harm than good if you stay.

Yes, it is scary to step out on your own especially if you entered the relationship as one and you are leaving with an additional two (in my case). As I look back leaving my daughters father when they were very young was the bravest act in my life. Had I listen to my father and stayed because of the children I might have ended up like Nicole Brwon Simpson or Mary Winkler and Men you can end up like many of the men showcased on "Snapped".

You can't change the other person in a bad relationship; you can only inventory yourself and changed your negative behavior you may have adapted in the unhealthy relationship. I always prayed for a loving man and I started to think they did not exist, that's only in the movies. I thank God everyday I took the leap of faith to open my heart again because the way my present husband and I met, it was meant to be.

I literally had one foot out the door because I did not see a mutual friend of ours at the time at her birthday party. It was he my (soul-mate) who located our mutual friend to stop me from leaving the party because I did not see her after arriving and searching the establishment looking for her. You see my husband and I did not travel the same social circle that night was the first and could have been the last night we would have had a chance meeting.

Because of him my daughters had an upbringing with a man that is more their father than their biological father could ever be. I will never understand a man or women who pull their emotional support from a child when the relationship ends. I thank GOD every day for stopping me from leaving that birthday party in September 1991. When I allowed opening my heart again and eventually introducing my soul mate to my daughters nine months later, my life forever changed. I allowed myself to love again without taking my past baggage and baggage with me.


I was blessed with a man who was not afraid to show his love me and my daughters and did the same with his son and daughter. He provided me with a man that did not pull his emotional support from his biological children. He provided me with a man who rescued his children from a mother who did not and would not protect them from the man in her life. He provided me with a man who worked and works hard to provide his family with a comfortable life and who wasn't afraid to tell us NO. He provided me with the strongest, smartest, loving, and compassionate man I know. Who would have thought I would be living my dreams of a perfect relationship while I live with an illness that is so unpredictable it would make most people run for the border.

If he could I know he would take away my PAIN from ms and take it upon him so I could be pain free. The words in the song "I Will Survive" saved my life in more ways than one. Finally, heed the words in the song and move on from an unhealthy relationship.

To Tell or Not To Tell

I have a dilemma, since I have been wearing the morphine patch the last three week. I have experienced absolutely NO PAIN, but the side effects I’ve experienced might be cause enough for my doctor to take me off the patch. On the very first day of wearing the patch my PAIN went away. My problem started later in the day of my first day wearing the patch, I experienced severe itching, the feeling of being high on drugs, slower heart beat and nausea without vomiting. For my itching and nausea feeling
I take medication for it. All of my symptoms left except for the itching it lingered around, but not as severe as it did the prior two days.

One patch stays on for three days; because my pain was gone I did not put a patch on after taking it off on day three. I called my doctor and told her of my experience and I asked if it was okay not to wear the patch since my pain was gone and only put it back on when the pain return. She was concerned about the severe itching and told me I might have to come off the patch, but I have to wear the patch continuously to keep the pain away. Honestly she was right because my pain immediately came back after I tried to go a day without the patch.

All of the side effects symptoms disappeared until this week. The feeling of being high on drugs never returned since it first happened, but the severe nausea was now accompany with severe vomiting. The nausea and vomiting was not an all day thing, but it reared its head whenever it wanted to. The severe itching comes and goes also, but the mother of all the symptoms is when I had a nightmare that was scarier than watching Nightmare on Elm Street. I had a vivid nightmare where I was literally puking up my guts. To think about the nightmare sends chills through my body, come to find out terrible dreams are also a side effect of the drug.

After having that dream I was ready to take the patch off myself, but living without the pain was the reason why I didn’t. My dilemma is if I tell my doctors about the nausea/vomiting experiences, the nightmare, and the severe itching she will probably take me off the patch. That is why I have not called her to tell, I don’t want to tell because life is GREAT without PAIN.

I have decided not to tell on myself until I go see her August 24. If she takes me off the patch I hope she has an alternative solution to fight the pain.

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.