Catching Up…Sorry About Being Away So Long

Thank GOD School Is Out

April 27 was my last day of class...NO MORE Linear Equations, Scientific Notations, Powers, Polynomials, and their relatives.

Blame them for keeping me from blogging :)





I Hope This Is Not My Last Mid-South Chapter MS Walk

I was not going to walk this year because I was upset the walk was moved from Shelby Farms to H. W. Cox Park in Collierville. I had a change of heart and decided to participate two weeks before the April 4 walk in Collierville. I formed my team and set a goal to raise $500, I thought that was reasonable because of the economy. That goal was achieved less than a week so I raised it up to $1000.00. I am happy to say my team and I raised over a $1000.00 for the MS Mid-South Chapter.

Unfortunately, I am sad to say moving the walk to Collierville was not the same as having the walk in Shelby Farms. It was very noticeable that the attendance was not the same (I guess others felt how I felt in the beginning). The atmosphere at the Collierville walk uninviting and unfriendly. If the Mid-South Chapter decides to continue the MS Walk in Collierville, this year will be my last year participating, but I will continue to donate to the MS Society.

The Mid-South MS Walk always been at Shelby Farms before Collierville start having a walk on the same day about 2 or 3 years ago. The Chapter excuse having it at Collierville’s H.W. Cox Park was it did not cost them and it cost $3,000.00 to have it at Shelby Farms. That is poor excuse to take it away from a traditional site. Free is not always best…less teams signed up, less volunteers’ and less vendors participated. ..most importantly LESS MONEY WAS RAISED.

P.S.

You all know I did not hold back on the survey sent to me by the National MS Society.




NO THANKS DOC

I am no doctor, but in my opinion having morphine entering your body 24/7 is worst than popping a Lortab as needed. I am so use to having pain and I now have a very high pain tolerance, but that tolerance level is penetrated every day. Lortab is prescribed 1 tablet every 4 to 6 hours I take no more than 7 tablets a week. One tablet a day to keep the pain at a level I can tolerate.

I like my neurologist, but I disagree with her preferring to have me on morphine than having me take Lortab, as I need it for pain. She seems to believe Lortab is more addictive than morphine. Hmmm, am I missing something here, I wonder what is the hang up with my neurologist and Lortab.

I am the one who lives with the freaking pain and I should have a say in what I choose to put in my body. There is no freaking way I want to go back on morphine and go through the withdrawals I had when I decided I no longer want morphine entering my body. Hell, It was me having heart palpitations, severe constipation, and feeling as if I would stop breathing any minute while on morphine. Yes, I felt no pain, but I was paying a high cost not to feel...A DECISION HAD TO BE MADE! I prefer to feel than to stop breathing at any moment. The choice is mine and I will make that very clear at my next appointment or I will find another neurologist.


Finally...



My Baby Girl is moving back home. She is not moving back in the nest, she is moving to be near her Mom, Pops, and sisters for a couple of years before she head off to Harvard for her Masters and PHD. I am happy as a kid in a candy store!

Keep On Moving

Sunday night I took a Tizanidine because I felt spasticity creeping in my legs. I felt the tightness and pain from my calves down to my ankles. I was grateful it waited until after my weekend ended before it started.

When I was given Tizanidine to take for spasticity, it was prescribed take one tablet every three hours. I did just that in the beginning, but I did not see the need to continue taking it once I was no longer experiencing spasticity in my body. Tizanidine was put in my take as needed category because it did the job after a day. Well, I was so lucky this time around, when I woke the next day, I did not feel the tightness and pain while I was lying in bed.

The minute I stood up and tried to walk my legs felt like concrete, every step was painful and my balance was shaky. I had no choice but to painfully make my way to the monstrous looking four-prong cane because I need assistance to keep from falling. I hated it when my doctor ordered me a four-prong cane and I was determined not to ever use it.

I thought to myself, “God, please don’t do this to me now after I had such a beautiful weekend and I have been feeling better since I have not been injecting myself with Copaxone”. It is funny how quick the mind thinks the worst and how easy it is to start feeling depressed when your way of life is threaten. I pushed the negative thoughts out of my mind and replaced them with positive ones. I put a plan of action together. First, I had to get rid of my vanity and accept the fact I need the help of my cane for now. I used my cane as I moved about my house and stayed off my legs as much as possible. Monday I completely rest in bed all day.

I decided not to pump myself with Tizanidine after taking it for a day and I refused to take Lortab 10mg to combat the breakthrough pain I was feeling from the spasticity. The morphine I have going into my body 24/7 is enough and I am trying to breakaway from taking Lortab whenever I have breakthrough pain. My goal is not to become heavily dependent on medication, I been there and done that. Since I have been on Duragesic patches, I noticed many of the daily symptoms I use to feel from MS are far between. I dwindled myself down from the many prescription drugs I am prescribed and my goal is to continue the Duragesic patch and a treatment to slow the progression of MS...Tysabri. I prefer to keep the other prescribed drugs as needed and my hope is I will not need them often.

My legs are feeling better and I do not need the aid of my cane, I credit rest, not allowing myself to become depress over my concrete legs, and accepting the reality my life is subject to change. For now I can keep on moving! I realize it is how I approach the changes when they occur because for now the changes are temporary when they happen. If a permanent change eventually happen I will deal with it when the time come.

Not Worth A Damn On Lortab 10mg

I only take a Lortab when I have breakthrough pain from wearing my morphine patch. Yesterday was one of those days my pain was wearing me down. I tried like the little red engine that could, but I finally gave up and took a Lortab for relief.







It is ironic how I can function on morphine, but I cannot function on Lortab. When I take a Lortab, I am in another world until I drift off to sleep. I blame what happened on my loving husband. Here I am thinking we retired for the night until he said, “A boudain sure sounds good right about now”. Of course, I tried to ignore his comment, then he says, “It taste sooo much better when you fix it”. Finally, my reply was, “You know how to do it because I showed you how”. Which is putting a rack in the electric skillet, fill it with water to the rim of the rack, wrap the boudain in foil, place it on top of the rack, turn on and place the top on the skillet.

Thinking he would take care of it himself, I thought no more of it he dosed off and I was in my world of narcotics feeling no pain. Until he popped his head up as if he never dosed off around 11:00pm with the same request. Being the woman I am and because he take good care of me and because I love this man with all my heart. I went downstairs and took a frozen boudain out the freezer to steam to perfection for my man. I knew the boudain had to steam for about 30 minutes to be just right, so I retreated upstairs to our bedroom until it was time remove the boudain from the electric skillet that was on high.







By the grace of God, I woke up at 3:48am, I was in a fog state and I smelled something cooking. I did not remember cooking anything so I did not rush downstairs to see if I had anything on the stove. I sat up in my bed wondering why I am smelling food after about 5 minutes I realized I freaking forgot I put a boudain in the electric skillet to steam a few minutes after 11:00 last night.

Not knowing what to expect when I went downstairs to the kitchen in a panic I grab the fire extinguisher (I keep a fire extinguisher upstairs) and rushed down the stairs. Whew, no flames, no kitchen full of smoke, and most importantly the electric skillet looked fine from first observation. I slowly opened the lid to view the inside and because I thought, the boudain was going to explode once I lift the lid. All I could do was thank God all was well.

Unfortunately, for my husband I woke him up and told him, “I will not honor anymore late night hunger cravings if I had taken a Lortab and it was his fault the house could have burned down”. I relaxed by going to the Fields and following up on my comment to post Reverend Wrights entire sermons.

Right Ass Out From This Point On

I thought it would get easier as the years passed, but it does not. Everyday I prepare myself mentally when it is time to take my Copaxone injection. I tell myself "This is the day; I will not take minutes to press the auto injector button to release the glatiramer acetate into my body." I am still waiting on that day.

I wish I did not have to take an injection everyday. I wish researchers discover a multiple sclerosis drug to slow the progression of MS that does not involve injections or infusion. I wish I did not have Multiple Sclerosis, I wish, I wish, I wish so many things when it comes to living with MS.

My injection site choices are my arms, thighs, stomach, and ass. I know I should probably say buttocks, but eff that I am pissed. My stomach is the best place to inject myself, I have not experience a bad experience there (knock on wood). When I inject my arms, thighs, and ass the pain is more noticeable, injection sites are more noticeable, finally the worst part of it all in those areas I have experienced IPIR and nerve reactions.

I talked about one of my IPIR reactions, but I never talked about my nerve reactions until this post. Immediately when I removed the needle from my right buttock, the nerves on my entire right side went haywire. My body went limp and I dropped thank God I was in my bedroom and fell on my bed instead of the floor. All I could do was cry from the excruciating burning pain that was traveling a nerve path. I cursed having MS at that moment. The severe burning pain is gone, but I am left with nagging pain in that nerve. Morphine is not keeping this nagging pain away. I am reduced to taking Lortab 10mg for this breakthrough nerve pain because I dared to inject my right ass to give the other parts of my body a break.

I should have known better because this happened about a year ago when I injected in that area. I thought since it has been awhile, it would be okay to inject there again. I freaking found out the hard way how wrong I was. Come to find out from my primary care doctor I can no longer have ANY injections in that area because the nerve is damaged.

What a life, MS is like a box of chocolates...day to day I never know what to expect from MS. I do know this for sure...My right ass is off limits to needles.

Take As Needed

There is nothing I can do when multiple sclerosis rob me of some of my cognitive. I can take Provigil to battle ms fatigue invade my body with a wave of extreme fatigue. I can also take a milder anti-depressant as I have in the past to fight ms depression.

Finally, there is the Solu-Medrol infusion that works when my ms symptoms cause my body to break down like Humpty Dumpty.



After my Solu-Medrol infusion Saturday, I felt great my body no longer felt like Humpty Dumpty. During my office visit Friday, my neurologist gave me her reason why she thought it would be a good idea for me to take Lexapro and Tizanidine daily. I explained to her why I did not want to take Lexapro and why I take Tizanidine on an as need basis. I finally gave in and told her I will start taking Lexapro once a day and Tizanidine twice a day starting Saturday January 05.

My living hell began Monday morning, mentally I felt as if I was going out of my mind and physically I could not get out of bed. I took back control of my life Wednesday. I do not try to play doctor on myself, but no one knows my body as I do. I called my neurologist and informed her on how I was feeling and as of today I will not be taking Lexapro anymore and I will only take Tizanidine, as I needed it.

It did not make sense to me to take pills that had me totally incapacitated mentally and physically. I went from living life to having no life and that is not me. I was not going to continue to take prescription medication that altered my mental state and robbed me of physically getting around no matter what my doctor thought. Life has been fine for me wearing a Fentanyl patch, taking Lortab as needed for break through pain, and injecting myself daily with Copaxone. Mentally, I am coherent and physically I could get around taking what I call my fabulous three. I also knew if I had any other symptoms that arise from multiple sclerosis I have an arsenal of medication as needed because at one point I was taking more pills than I can count on a daily basis because I was told to do so.

Because I was told by my doctors to take certain prescribed medications I almost lost my life twice. I am damn if I do and damn if I don't. I rather be damn if I don't from this point on.

INSOMNIA

I have not grieved as I am now since the death of my maternal grandfather 25 years ago. I am carry on with my daily activities, but I feel as if I am just going thru the motions. Since Mary’s death, I have not been sleeping well. I finally took an Ambien 10mg Tuesday and Wednesday night to no avail. My doctor called the pharmacy and prescribed me Klonopin to take with my Ambien.

I was hoping I did not have to take a Klonopin, but as I began to type my thoughts, I decided I should. However, I thought it was best for me not to take another Ambien along with it, since I been taken Ambien from prior days. I hope the Klonopin is effective tonight, because the pain I feel from multiple sclerosis is breaking through with a vengence while I am wearing a Duragesic Patch. I do not think it would be wise to take a Lortab for this break through pain tonight since I have taken a Klonopin. I lived with multiple sclerosis long enough to know I am on the verge of an exacerbation. The last thing I want now is to have a Solu-Medrol Infusion because of an exacerbation.

It was months before I was able to move on grieving my grandfather 25 years ago. For the sake of my health, I have to find peace with Mary’s death. I thought I found peace when I felt her presence during my daughter’s wedding. Today, I had to stop myself from picking up the phone to call her. When that happened I was mentally back, to the morning she died and that unbearable sadness engulfed me all over again.

Inspirational music is a comfort for me and tonight I choose this to give me peace to get through the night. I look forward to waking up tomorrow with a renewed strength.
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Morphine and MS

The patch starts at 25mcg and of course that is what I was started on. It was too much for my body to handle after three weeks of continuous morphine going into by body. I talked about how good I felt on the morphine patch and how it turned on me. Well, I am happy to annouce the patch comes in a lower dose of 12mcg…it just came on the market. My pharmacist told me when I inquired if I can cut the 25mcg patch in half. The lower dose patch was so new neurologists and doctors did not know the morphine patch came in a lower dosage. I called my Neurologist and informed her about the lower dosage and we decided to see if having a lower dose patch would work for me.

On September 27 it will be one month I have been wearing a 12mcg Fentanyl/Duragesic patch. I have not been feeling the daily nerve tingles through out my body and my pain is about non existent. I only had to take Lortab 10mg every now and then for break thru pain. I am able to function more now that I do not have to take the numerous pills I had to take prior to wearing the patch.

I know what is working for me may not work for others, but that is why I blog and talk to others about what works for me because what is working for me might just work for you. My goal was to not take so much medicine on a daily basis and for the last month wearing the lowest micro gram of morphine has helped me reach that goal. I now only wear the patch take my Copaxone injection daily and take one or two Lortabs a week. That is a far cry from taking 10 different prescriptions on a daily basis.

The only problem I have now is getting use to taking the injections again after stopping for thirty days when I considered taking Tysabri. I am not going to lie… it still hurts like hell every time I push that needle, but Copaxone is working and I have to do what I have to do.