You Get What You Pay For...

You Get What You Pay For

The Perils of Health Insurance

Last year this time seemed like a magical time for me.  I had and was still going to see my long time doctors who knew me.  I didn't have a problem getting a new prescription, a new refill and or a same day appointment. Oh how I miss those days. :(

With new management came new changes. One BIG change for our family was having to change our current health insurance. Now, don't get me wrong. We could have easily stayed with our current, wonderful health insurance...for a small fortune.  My husband and I sat up nights, talked during the days, and tried hard to figure out how to keep our current insurance.

If we had kept our current insurance, there would be a $3,500.00 fee that you pay BEFORE the insurance would kick in.  If that's not bad enough, there is a 10% fee for services, this all gets added into the total $3,500.00.  Now, here's the gist of why this was heartwrenching.  My current multiple sclerosis treatment is approximately $9,000.00 per month.  This $9,000.00 includes nurses assistance, all medical supplies and time in the infusion room and patient monitoring. The insurance is my husband's and once you figure everything out it is literally a cut in pay.  A cut in pay from your employer who hasn't given out even a standard of living raise for five years.  I couldn't and wouldn't do this to my growing family. And under great hesitance from my husband, we signed over to the new insurance.  Again, oh what joy, in my most sarcastic tone. 

Okay, the new insurance started off pretty well. There are $5.00 copays. Okay, manageable.  I was able to find a neurologist to keep the continuity of my treatment up. Okay, another plus.  I was able to link up to a primary doctor for myself. Another plus.  Even though I had just switched doctors for my children with the previous insurance, I found them another pediatrician. He was pretty cool, yet another coup for me.  But, as time goes by, my rose colored glass are turning clear and my husband and I are finding out the hard truth is that you get what you pay for.

Now, on paper, our current insurance, especially for employees, seems great.  But, gone are the doctors who know your case.  Gone are the doctors who really LISTEN.  Believe me, I know my body and my symptoms, when I say I need a script, I need a script.  I don't want a primary doctor to tell me to ride it out.  You know what riding out a sinus infection or any infection will do with a person who has multiple sclerosis and has a compromised immune system?  It causes relapses.  I ask for medications that my previous neurologist and primary doctors have had me on for years. You know why? Because...it WORKS.  But, can I get a script for that medication now with my new doctors? NO.  Their excuse is that they don't know me well enough to provide me the script.  Really? Did you read my chart? Have you spoken to my other doctors? Do you realize that I have a VERY complicated case? Unfortunately, not.  

I am stuck going back and forth, coming in for a visit that yields no answers and no relief.  The scary part is that I am left self medicating because getting a prescription for seemingly anything is impossible. I can't get a script for my fatigue medication anymore, so I am now on liquid Vitamin B12. The nerves swell in my feet, but I can't get a script for neurotin, so I am taking large doses of ibuprofen to take out the swelling of the nerves in my feet.  Anything sedating is pretty much off limits, so my sleeping problems which stem directly from my multiple sclerosis I have to buy over the counter medication for that.  When I am truly sick and need to be seen that day is not an option.  I was sick on a Thursday, pleaded for a same day appointment. I was told that those did not exist.  My appointment because my husband worked for the employer was scheduled for Tuesday of the following week.  They told me if I got worse go to the ER which is ALL the way across town.  I am so frustrated that I could just cry.  Am I grateful for health insurance. For heavens, yes. There are so many people without that I am truly grateful that I have an insurance company that will pay for my high monthly multiple sclerosis treatment.  But I wish that I had truly appreciated what I had with my previous health insurance company.  Oh how I miss them.  Like the saying goes, "You go from sugar to sh**!"

Recuperation After The Holiday

Recuperation After The Holiday

Hey all! I'm BAAACCKK!!! I took a couple of days off to prep for my out of town trip to see my family in New Jersey.  Again, what I have found out is that the prep of a trip is the hardest step. If you can see your way through this step, the rest of the trip is all down hill. And, trying not to do too much and pacing yourself during your trip is a good idea also.  But, don't worry, I didn't follow my own advice with pacing myself and not overdoing it.  How could I!?! I was excited to have my children see their uncle who is a DOTA (Documented Original Tuskegee Airmen).  He is walking history! So, yes the excitement superseded my plans to just cruise through the trip.  Oh well.  

In retrospect, I knew when and how we were living, and I should have planned better. That is the key.  I really have to do prep better and over a longer period of time.  My advice to any person out there that is suffering/living with a chronic illness and planning vacations a longer prep time for the trip is a necessity.  Please give yourself at least two weeks prep, or pack, to be ready for a vacation.

Now, after the trip I am finding that being road weary is the hardest.  With multiple sclerosis, chronic fatigue is a killer.  And it is a killer after a trip.  If you are among the lucky ones still working, please come back a couple of days before going back to work in order to get your rest. This is a must.  I am now, just trying to recuperate.  

Recuperate has many meanings for many.  Recuperation for MS people is bed rest, bed rest, bed rest.  Keep up your regular scheduled medications as usual. Plan a massage.  Plan a spa day, or have a friend or family member come over and pamper you.  If you have a regularly scheduled therapy or exercise appointment, delay it. Don't push yourself is the key word or you are setting yourself up for a relapse and high doses of IV steroids or solumedrol.  Not a good thing.  

Well, I am going to get my rest and I blog from my bed.  My family has me ordered to bed and plan on taking the computer when I stop.  Having a great and loving support system beats everything and keeps everything in perspective.  Loving support helps the fatigue and weariness go away.  Talk to you later tomorrow.  P.S. REST.

My World Is Spinning...Make It Stop!!

Dizziness with multiple sclerosis is a very common symptom of the disease.  The person has the feeling of feeling lightheaded and everything around them is spinning, more commonly known as vertigo.  Well, since my treatment I have been dealing with dizziness and vertigo.  I just want it to stop.

The reasons for dizziness are because of lesions, or the damage that the MS has caused to your brain.  The damage caused by MS is the lesions that interrupt the very complicated pathways that coordinate and control spatial, visual or input that goes into the brain from the eyes that is needed to produce and then to maintain equilibrium.

Now, since I have been having this dizziness and vertigo since my Tysabri treatment, I need to call my neurologist and get a prescription for the medication that works for me, which is Atarax. I have been taking my Atarax, but it has not been effective.  Yes, I am hesitating to call my neurologist because if the Atarax is not working, the only thing to work is prednisone. Ugh. Now, I have to do all of this, probably squeeze in seeing my neurologist all before the Memorial Day Weekend.  Yet, another necessary evil that comes along with multiple sclerosis.  Did I mention that I HATE prednisone.

Well, I have to go and call or yet webmail my doctor for a script, or knowing my doctor, he'll want to see me...ummmm....like next week.  Just gotta love new health insurance, again, yet another joy.

Well, let me handle my business, as my world goes around and around.  

The Memorial Day Weekend and Traveling

The first holiday of the summer is coming.  Memorial Day Weekend! I, like so many others, am gearing up and waiting to enjoy the festivities.  There are so many things to do, so many places to go, whats's a girl to do!?!? The reality of it is that with any chronic illness, you have got to pace yourself and try to hold back your excitement.  

There are some tips for all who have multiple sclerosis or any other chronic illness for a good and pleasurable trip.

• If you are driving to your destination, have a blanket and pillow for comfort.  Look at your driving route to chose rest area stops wisely.
• If you are flying, use the bathroom right before boarding.
• If flying, please have a note from your doctor stating your condition and fill out the medication card that comes with your injectable medications.
• With luggage, please have assistance, or definitely have the luggage on wheels and long handles.
• Now, during the trip, there are ways to decrease some of your fatigue, the number one thing to do is to keep yourself hydrated.  Don't worry about the rest areas because you have already mapped them out, so relax.
• Multiple Sclerosis, along with many other chronic illnesses, it is best to avoid over sun exposure.  This will cause increased symptoms and will put a damper the rest of your trip.
• If you use assistive devices i.e. scooters, walkers, canes, use them.  This is a part of your life and be proud that you can partake in the festivities. 
• Just try to enjoy yourself, pace yourself, keep yourself hydrated, get adequate sleep.
• Always let your doctor know that you are going out of town, and he/she will assist you in locating a hospital.
• Make sure that you have your medical insurance cards and ofcourse, your medication is key.  Make sure your medication is in an easy access place.
• If you go to am amusement park, please call ahead and if you didn't bring your scooter, one will be provided.  There are special services for being disabled. 
• Try, try, try, to pace yourself during your trip and try to get at least 7-8 hours of sleep.  Sleep is a must to combat fatigue.

I will be following these own tips myself and looking forward in seeing family.  I am slowly packing, allowing the kids to wash and pack their own bags, I am accepting help from others to get the house in order before we leave, including having friends house sit and babysit the animals.  Though I am trying to flare, I have really pulled back and increasing my rest.  The kids are on there own for the next few days, but it will be worth it when we are on our way and I am healthy and happy.  

And though, people think of Memorial Day as just a day to eat and be with family and friends, that is only one part.  This is a day of deference and respect for the men and women who have given their lives for our country. We salute you.

Heat and My MS Symptoms

I think that any person with multiple sclerosis could write a book about their symptoms.  Today, after my treatment this weekend, I seem to be in no better shape.  Maybe it was my treatment, maybe its the increase in the barometer. I don't know.  What I do know is that I have Mom duties today and I don't really think I am able.

As the temperature rises so do MS symptoms.  My MS symptoms today include: fatigue, inappropriate cold body parts, though the temperature is going up, and extreme dizziness.   And, I am grateful that I don't have too much thinking today because I am having problems with cognitive dysfunction.  My problem is memory problems and a real problem with forgetfulness and slow word recall.  In my case, real slow word recall. And since I hate MS and the symptoms that have flared, their is that problem with depression.  It's a terrible thing when MS symptoms come back with a vengeance.

As my MS progresses, I am under the realization that I may need a caregiver, I may need someone to come to my house, and like today, I need someone to run around and do chores for me.  Again, today, I feel like a burden to my family.  It's a beautiful day and my options to care for my kids are limited.  I feel bad for my husbands because a caregivers job is seemingly never done.  But, I will muddle through this day. Pray that all goes well and pray that all goes well. 

MS And Diet

 

Diet and nutrition is paramount for anyone that has MS and any other chronic illness.  Health problems from a bad diet and or nutrition could lead to an increase in problematic symptoms of any chronic disease.  I know that a well balanced and maintained diet are good for me.  Now, if only I could not be so lazy in regards to this.  Not lazy in the terms of just eating whatever I want.  My problem is that I am always on some cooky diet to beat a seemingly undefeatable battle with trying to lose steroid weight.  And by the way, is that even possible to lose steroid weight after being on and off mega steroids for almost six years? Just asking. 

 

But, I am noticing that I am getting older and the extra weight is causing me some problems that I didn't have, say, in my 20's and 30's.  I have elevated cholesterol and my blood pressure is slowly creeping up.  So, no I am much more invested.   MS specialist recommend that people with MS follow the same low fat, high fiber diet as the general public.  High fiber is a must due to many medications do cause constipation.   

 

• I have heard of some diets that are said to refuse or allow a person with MS to be symptom free.  One diet that I am interested in buying is the Swank MS Diet. http://www.swankmsdiet.org/.      The Swank MS Diet was discovered by Dr. Roy Swank.  The premise of this diet is  that a low-fat diet, very low in saturated fats and polyunsaturated oils, helps MS patients live healthy and productive lives. Also low in red and other fatty meats, high in grains, fruits and vegetables, it is simple to follow and in many cases alleviates chronic symptoms.  Ofcourse, this MS Diet would be great for the general public to aid in obesity, heart disease, high blood pressure, diabetes, cancer, arthritis and ofcourse MS.  

 

Here is a quick reference to the Swank MS Diet.  I am definitely ordering my book today and along with this and watching my carbs, maybe I could not only lose weight, but radically reduce my symptoms, especially my pain.  

 

 QUICK REFERENCE

1. Saturated fat should not exceed 15 grams per day.
2. Unsaturated fat (oils) should be kept to 20-50 grams per day.
3. No red meat for the first year.
4. After the first year, 3 oz. of red meat is allowed once per week.
5. Dairy products must contain 1% or less butterfat unless otherwise noted.
6. No processed foods containing saturated fat.
7. Cod liver oil (1 tsp. or equivalent capsules) and a multi-vitamin and mineral supplement are recommended daily.

TYSABRI TREATMENT WEEKEND

I have found that many patients with multiple sclerosis, especially celebrities with the disease are reluctant or do not tell which therapeutic treatment that they are currently on.  Well, I am on Tysabri and today was treatment day.  Oh...what joy!

Tysabri is one of the newer drugs for advanced stages of MS.  A fun fact to know about Tysabri is that the FDA granted it a black box due to the potential lethality of the drug.  To better understand all these drug treatments lets look at what the drugs do.  The current theory is the people who have multiple sclerosis have an immune system that is in overdrive.  Hence, ALL treatments for multiple sclerosis compromise, lessen, weaken, crumble it to all hell your immune system.  So since our immune systems are "compromised", that is the PC (politically correct) word that I should use, means that we are much, MUCH more likely to catch just about anything. Again, what joy! 

All treatments are used for the purpose of trying to stave off relapses or exacerbations and to try to halt the progression.  Now, will all treatments there are side effects, flu like symptoms, weakness, nausea, and chronic fatigue.  With Tysabri and the black box warning is because of a virus nickname, PML, which is short for   progressive multifocal leukoencephalopath.  They do have a current blood test to see if you have a antibody in your system called an anti-JVC antibody.  Now, PML is a rare but very serious brain infection that usually leads to death or severe disability in people with MS.  Again, your increase for this is is you have this JVC antibody, then you should not take Tysabri. Another risk factor for PML is the use of immunosuppressant therapies taken prior to starting on Tysabri.  And, the third risk factor is the longer that you are on Tysabri. The test for this drug was for two years.

I was on Tysabri before when it first came out.  I took it along with another therapy called Rebif.  This combination made me sick as a dog.  Then cases with PML started happening and there was loss of life and Biogen, the maker of Tysabri pulled it off the market.  I went back on Rebif and continued to worsen, and was then put back on Tysabri and Tysabri only.  I still progressed, still relapsed and was pulled off of the drug after being on it for two years.  I was pretty my without a treatment for a total of one year, which progressed my MS and has lead me to debilitating pain which is daily.  Now, I am back on Tysabri, but I know that the two year mark is closing in on me again.  Again, what will I do.  I don't know. I do know is that out of the three risk factors to PML, I have two.  All I know is that I have to keep God ahead of this. This is much too big for me. 

Now, that being said.  I am, due to my treatment, sick as a dog, and about to fall out.  Treatment weekends are horrible. But, God is able, and I'm here for my family.  "My head is bloodied, but unbowed."

Know more about Tysabri @ http://www.tysabri.com/index.xml

Open Letter to Family, Friends and The Wonderful Ladies of 

Sigma Gamma Rho Sorority Inc.

Dear Family, Friends and my SoRHOs of Sigma Gamma Rho Sorority Inc.

I just want you to know that I am still here.  I just have to tell you how much you are missed and loved.  I wish that you can understand the depths of the isolation that multiple sclerosis has caused.  My MS has caused me to isolate myself, but not on purpose.  Please understand that it is not that I do not want to see you, that I don't want to be around you, that I don't love and miss you.  My MS has taken a toll on more that just my mental and physical health.  It has robbed me of energy, energy to spend time with family and friends and my sisters of Sigma Gamma Rho Sorority Inc.  

I just ask that you remember me.  I hate that the days I feel well, there is no one to call, there is no one to see, seemingly, no one that cares.  Just remember that my door is always open. Open for visits, open for hugs, love, attention, conversation.  My door is open.  MS is a insidious disease. MS has robbed me of my energy, my zest for life, my mental acuity to carry on conversations and now it is robbing me of a social life.  MS is robbing me of social interaction, going out, having fun, relaxing with good friends, companionship.

Family and friends, I love you and try to make every effort to reach out to you, even if the only thing I can do is text, or facebook.   Forgive me for not calling, talking on the phone is very taxing. I'm sorry about that. To my lovely SoRHOrs of Sigma Gamma Rho Sorority Inc., my door is open SoRHOrs.  My home is big enough to hold a meeting, a get together, a meet and greet.  Please, don't forget me. 

I'm still here...I'm still here. 

Love,

Carla!

I Need A Massage

Alternative Therapy for MS

 There are many treatments for multiple sclerosis, which I have blogged about before.  And there are many medications to take for the many, many symptoms of MS.  Now, I take Tysabri as my main MS treatment, but my medication sheet is much, much longer than that.  One thing that I am incorporating is that of alternative therapies.  

One alternative therapy is massage therapy.  Massage therapy  is the manipulation of superficial layers of muscle and connective tissue to enhance the function and promote relaxation and well-being.  That just sounds truly divine.  I will discuss more alternative therapies and these alternative therapies are all about relief.  There are a few types of massage i.e.

• Swedish massage. This is a gentle form of massage that uses long strokes, kneading, deep circular movements, vibration and tapping to help relax and energize you.
• Deep-tissue massage. This massage technique uses slower, more forceful strokes to target the deeper layers of muscle and connective tissue, commonly to help with muscle damage from injuries.
• Sports massage. This is similar to Swedish massage but is geared toward people involved in sport activities to help prevent or treat injuries.
• Trigger point massage. This massage focuses on trigger points, or sensitive areas of tight muscle fibers that can form in your muscles after injuries or overuse.  http://www.mayoclinic.com/health/massage/sa00082

 
 The benefits of having a massage with MS are numerous.  Massage therapy helps relieve the MS symptoms i.e. stress relief, pain relief, and addressing and easing anxiety and depression.  As I speak, or write, I am fishing through my wallet for the card of the lady that comes to your home and does massages.  I can definitely go for a Swedish Massage right about now.  The pain in my neck and back are unbelievable. And P.S.  I can only take my MEGA pain pill at night.  Ugh....the PAIN....HELP!!!
 

I Can Do It Myself...Will Somebody Help Me?

 

 

One thing that I am still learning about Multiple Sclerosis is that I am/ and have to continue to redefine myself.  I consider myself a work in progress.  I still fight with control and be independent in many of my life states.  What frustrates me and I fear that it always will be that at times I can be my own worst enemy and not requesting help.  This is not a really not a good thing.

Physical and emotional changes have wrecked havoc on my self confidence and self esteem, but I am learning and will continue to learn how to alter my ways of doing. I am learning to modify my environment to make cooking, cleaning easier. I used to not want to ask for assistance from my family, like my husband and my children. Especially my children.  I felt that they were children they needed a childhood and they need not to be burdened by "Mom Chores".  Now, my whole view on this has shifted.  Yes, now, the kids have a chore list, more so than before.  The focus is if we want Mom to stay healthy, then she needs help.  I am learning to live with this. 

Living with Advance Multiple Sclerosis is not easy.  I now use a cane.  I cook, at time, in my cart, and I have a motorized scooter.  These are all things that, do I like? No, but do I need them? Yes.  Do they give me more independence and control? Yes.  I call them my necessary evil.  

Look, asking for assistance is hard, difficult, embarrassing, but, needed.  I am slowly learning to put my pride aside and say, "I really can't do this or that, could you please help me?"  It is still difficult because I do worry about being a burden on my family.  But, I also realized that not asking for help, is the same as asking for help and doing too much can aid to a serious set back for me.  What I have found out is that doing too much leads to exacerbations, which leads to a relapses, which leads to more steroids and the vicious cycle starts all over again.  I grit and bear it, but, I have to admit, I need help more often than not.  And, I think that I am okay with this....well at least today. 

Low Carb Diet and MS...I Don't Think They Mix!?

 Okay, so I had to go to a weight management clinic per doctor's orders, it was suggested to do low carb, or REALLY watching my carbs.  So, I go out, look at carbs, pick up Atkins bars, low carb pastas etc.  I have to tell you....I feel like crap!  I should probably rethink this whole diet thing.

Now, don't get me wrong.  I have lost a few pounds in just a few days.  But what I don't think my weight management physician failed to let me know was the side effects of a low carb diet would do to my MS symptoms.  The one thing with low carb diets is the body uses its internal carbohydrate stores (glycogen) for energy. When your body burns glycogen, water is released and you lose weight. After the glycogen is gone your body starts to burn fat. If you don't have  carbohydrates in your system, burning fat results in the build up of a byproduct called ketones.  Ketones cut down your appetite, thus  you lose weight.  

This sounds like a great plan, but lets look at what ketones does to the system of a person with multiple sclerosis.  Ketones in a person with MS still cuts your appetite, but it causes fatigue.  This is causing me a significant problem in my symptoms.  Hence, I feel terrible, even more so. Also, I have been on steroids on a regular basis for many years. I already have osteopenia, which is a precursor for osteoporosis.  This high protein diet that I am currently is not only limiting some of my calcium sources, but the diet is causing my body to lose calcium.  I don't think is a good idea. And last, but not least, constipation.  From many of my medications a reoccurring side effect is constipation.  So, between my medication and my low carb, high protein is, let's say, clogging things up a bit...well, a lot. 

So, I am going to have to go back to the drawing board with this whole eating right, and stop thinking of just being on diets.  I have to find a happy medium.  The diet has affected my mood, has increased my symptoms and has left me feeling terrible.  There has to be a better way.  

Having A Chronic Illness With Children

Nothing brings more terror to you than having a doctor tell you that you have a chronic illness.  A chronic illness that can become disabling and all you can think of is your children.  This is terrifying.

When I was diagnosed with multiple sclerosis my youngest was 15 months old, and my oldest had just turned 4 years old.  All I could do was sit and cry with my my mother and father sitting there watching me feeling helpless.  After a while, my  mother looked at me and said, "Carla, God wouldn't have blessed you with these children if you were not going to be around to take care of them!"  Something in me just snapped.  Mom was right.  I had went through many trial and tribulations just trying to carry a child.  Would God put me through all that just for me not to be able to take care of them? I think not! 

Though I had a spark, I still had to face the reality that this was a serious disease.  I was almost in denial of the disease.  I had my husband be my mouthpiece and talk to my neurologist.  I had my husband and my neurologist pick out the medication I was to be on.  They chose Rebif.  It was fine with me.  I was in a fog.  

I went on the same.  I noticed different changes.   Most of all I noticed the fatigue. But babies don't understand fatigue.  Babies don't understand that Mommy is just too tired.  On really bad days we spent time in the living room.  I went to the Dollar Store and bought a huge wicker basket.  In this wicker basket, I had age appropriate toys, games, crayons, construction paper, scissors, glue, glitter, coloring books, crayons, playdough.  You name it, and it was in there.  I would lie on the couch on those bad days and let the kids go wild.  They learned to play together and share, and it let them be creative, while giving Mommy much needed rest.  I also bought a desktop fridge to keep near me because walking was an issue for me.  My hubby filled it with juice boxes, bite sized sandwiches and on top of the fridge, dry snacks.  It worked out for me and if you have small children, please try some of these suggestions.

Though you may have a chronic illness, and sometimes it may be hard to think ahead, think ahead when you are having a good day.  Think of somethings that could occupy your child because you and I both know that that bad day or days are coming.  A little planning ahead for what you know is coming down the pike is golden. Trust me. 

My children are older now, and they have weathered storms children shouldn't have to weather.  They have seen Mommy not being able to walk, not being able to speak correctly, nurses coming to the home, Mommy being put on intravenous and bedridden. My husband and I have been honest and kept it child friendly.  And though Mommy battles this disease everyday, I still try to smile everyday for them.  I want them to know that Mom is fighting...for them.

 

Mother's Day always gives me time to reflect.  I like to go back in memory of the times with my mother.  We had some good times and bad times, mostly because I could be hard-headed a lot, but, there was love.  The things that she taught me are immeasurable.  How do you start? From learning to love yourself, respecting yourself, educating yourself, bettering yourself, pushing yourself, always strive higher, it's always darkest before the dawn, don't lose strength, and keep God first.  The list is endless.

Now that I am a mother, I appreciate it so much.  Others were able to conceive and have babies, no problem.  But, my Caleb and my Kelsey are definitely my angels.  See, there was time when I didn't think that I would ever be able to carry a child.  I got pregnant, no problem.  Staying pregnant was the problem.  Many miscarriages, ectopic pregnancies took its toll on my sanity, on my soul, on my being.  I cried out, and finally surrendered.  If it was meant to be, it would be, if not, it would not.  

Now how blessed am I to have not one, but two children. They are handsome and beautiful, poised, well-spoken, intelligent, and just really great kids.  I like to say that I had a hand in this, someway, somehow. But, those first five critical years, they were wrapped in love of their Nana, and their Great-Grandmother, G.G.  Nothing but love, consistency and boundaries.  I appreciate those mothers, my mother, my grandmother, these generations that taught me how to be a mom.  As I look at myself, I no longer see myself. The face that I see is that of my mother.  I look like her, I talk her, I think like her, I sound like her.  I just want to be the mom that she was with me and my older brother to my own Caleb and Kelsey.

So thank you Mom and G.G. for showing me how to be strong woman.  To show me that in the depths of darkness, you have to faith that the light is ahead.  Thank you for showing me to fight, because without that spirit, I would not be here.  That's a combination of both of your spirits connecting in me.  And for that I am truly appreciative.   You are loved.

TMI: I Go, I Go, I Always Have to Go

 This may be a TMI moment, so just bear with me.  MS takes it's toll on literally every part of your body.  Here are just a few things that MS can do to the body.  You have little or no bladder control, you need to urinate more frequently, like five minutes after already going, you have a feeling that your bladder is never empty. I had medication for this called oxybutynin.  It helped, but not that much, so I discussed with my doctor to discontinue.

My issue or continuing fight with my neurologist is not totally being able to empty the bladder.  This will lead to infections and ofcourse, infections will exacerbate MS.  Now, the treatment for this is  intermittent self-cathertisation (ISC).  This would be for me to do at night so I can get restful sleep, which is nearly impossible with MS and will eliminate the many nightly trips to the bathroom.  Yes, I know that this is something that would alleviate a lot of problems for me.  But, I just can't put in a catheter on myself quite just yet.  I know it's coming, just not today.  For the time being, me and the bathroom are very close friends. 

MS Etiquette

I have been diagnosed with MS since September 2003.  I feel like I am fighting the good fight everyday, and then there are some days when the MS is beating me.  After my diagnosis, I continued to work, take care of home and family and then some.  Even now, years after my diagnosis I still hear some of the most annoying, rude and downright selfish comments....EVER!  So, please let me give you  a few things as not to say to a person who has MS.  

•  "I know someone that has MS, and they're in a nursing home."
• This is probably right at the top of what you can say to someone who has MS.  We know what trail this disease can take us.  We choose to look at the positive, not your little dig you just threw at us.  Give it a rest.
• "Is is hereditary?"
•  Now, this comment just grates on my nerves.  You hear your loved one has MS and the first thing you think about is yourself? Wow, how very narcissistic of you.  By the way, I am fine and the last time I checked you couldn't inherit my chronic illness.
•  " I know someone who has MS and they are still working.  Why aren't you working anymore?"
•  If I heard this once, I have heard it a thousand times.  I follow strictly what my doctor deems necessary for my case.  I'm really not interested in who you know and what all they can do.  MS is not only different on a daily basis, but affects people differently.
• "But, you don't look sick.  You look like the picture of health."
•   My father always told me, no matter how bad you feel, you get up, shower up, get dressed and put on your best face.  He said looking good is half the battle to feeling good.  I don't know how I am supposed to look.  Maybe haggard, crying all the time, rundown, but believe me I have those moments in the privacy of my own home.  I try to look my best everyday.  And, yes Daddy, that's half the battle.  Maybe I will get a custom made shirt with my MRI scans on it so they can see what's going on, or rather what's not going on right in my head.  Maybe I won't hear this.  It's a thought.
• This person I know has MS and she/he seems to be doing much better than you!"
• Yet again, just be quiet!!! MS is different for everyone.  MS does not affect people the same way.  People do not progress at the same rate.   My name is Carla, not the person you know who has MS, so please, just quit it.

• So, when are you going to die?
• Umm, last time I checked the odds of me living a fulfilling life are pretty darn good.  Yes, some have succumbed to symptoms of multiple sclerosis or the complications there of.  But many of us go on to live a long, hopefully fruitful life. 

•  So how does it feel to be a burden to your family?
• Really, did you really just say that?  We the people, who have multiple sclerosis do not think, nor do we ever want to be a burden on others, especially our family.  I know, I tend to go out of my way not to ask for help and or assistance.  Most of the time it is thrusted upon me.  Though we have a disabling chronic illness, we still do not and will never consider ourselves a burden on anybody.  Please stop calling us a burden.  We are humans with an illness, nothing more, nothing less.  

• Multiple Sclerosis, is that contagious?
• Wow, it is just so frustrating that there is still no common knowledge regarding multiple sclerosis.  The cause of MS is unknown, but there are studies that state that people having had mononucleosis in their earlier lives are four times more likely to be diagnosed with MS in later life.  Well, I had mononucleosis twice, so I was twice as likely to develop MS.  Lucky me.  But, sometimes I feel like when the person ask me that, I want to sneeze or cough on them and say, "Oh yeah, it is contagious, especially when I sneeze or cough!"  But I am patient and explain that, NO, MS is NOT contagious.  Moving on.

Please remember that we are dealing with a very serious and chronic illness.  If you have questions, we will gladly  ask them, but, try to think before you speak.

•  

If I Don't Understand, You Couldn't Understand

 Today is just one of those days.  It's a beautiful spring day, my family is happy and healthy, but, I just feel like crap.  I don't want to be bothered, I was to be left alone, I am annoyed, irritated, and don't want to talk.  Unfortunately, my family at these times seem to increase their non stop chatter.  I grin and bear it, but it is driving me batty.  These "funks" or moods are happening more often, so I though it was about time to do some research and get some understanding while in the meantime, get a grip on myself. 

My husband, God bless him, wants to help.  I wish there was some great potion that he could give me to ease the angst that I feel all the time.  Again, if I don't understand what's going on in and around my head and body, how can I expect anybody to understand?  A man's job is to fix things.  When they can't fix things they get frustrated.  So, that's where we are.  I am all stupefied and unhappy and he's frustrated because he can't fix me.  I wish he could. 

 The more my disease progresses the more that I am away that MS has really profound emotional consequences.  I know that my mood is more labile, or easily switches from joy, happiness, to sadness, basically a emotional rollercoaster.  On days like today, I could just give up.  So, as I sit here and do a mental check, trying to raise my spirits, ummm, it just not happening.  But seriously, I need to find out how to get off this rollercoaster.  Any suggestions?

MS No More

This page is dedicated to the fight to end MS.  Thanks to my son and daughter for coming up with the logos and many thanks to my cousin, Kimberly English-Cole for the designs.  Please help support the cause. Thank you.  http://www.cafepress.com/msnomore

An example of one slogan.  

My ULTIMATE favorite slogan.
The designs on all apparel are done by Kimberly English-Cole.  If interested, please email her at: kimberlycole@live.com

Stress, Stress and More Stress

Regardless if you suffer from MS, another chronic illness, or no illness, stress in itself can make you feel sick.  Stress just can make any of us feel  much worse.  The physical symptoms of stress include sore and knotting of our necks and backs, stomachs nervous and upset.  Stress can be positive or negative.  I have found that in either one of the types of stress my MS symptoms are more prevalent.  And yes, I am told to relax.  But, no, I haven't quite yet figured out how to just relax.  I think my still wanting to be Super Mom makes me feel guilty.  I feel like I should be doing something, I need to be doing something, so in essence, I don't know how to relax and I am stressing myself out!  

I know that learning to relax is essential to my well-being.  I just haven't quite figured it out.   Now, it's not like I haven't given it a great try.  I have bought a yoga mat, hardly used.  I have bought Denise Austin Yoga DVD's, hardly used.  I have bought Pilates for Dummies, and Pilates for Beginners, barely cracked open.  I have tried to meditate, which is supposed to really good.  To be honest, I haven't gotten the knack for meditation.  What do I think about? Do I say a mantra? Where do I find a mantra? When I try to meditate, why am always thinking of stressful things?  What needs to be done, what needs to be bought, what needs to be cleaned, what are the kids doing?  It's all very confusing. So, if anyone knows the secret or knack to meditation, I am up for suggestions.  Come to think of it, do they have a DVD Meditation for Dummies?

My Mom Has MS And She's Still The BEST!

MS is a very difficult and challenging disease.  It's wonderful when you have the love and support of your family.  I would be remiss if I didn't say how honored I am of my son, Caleb.  My son, Caleb, wrote a book in my honor.  The title is, My Mom Has MS And She's Still The BEST!  It is available anywhere books are sold, www.amazon.com,  www.barnesandnoble.com, or just Google the title and up will pop many places where the book is available. 

Yes, the book is about MS, but it is so well written that if you are a parent with a chronic illness you should really pick up a copy.  This book is from a child's perspective of how they internalize their worry, their fear and the feelings about their parent that is ill.  I had no idea what was on my son's mind until he wrote that book, and for that I am truly appreciative of his openness and his raw honesty.  So, thank you  Caleb for writing a book in my honor.  You are truly just a remarkable young man and I love you so much. 

The Many Treatments for MS

Because there is no cure for MS, with fundraising and increased awareness is allowing researchers to find differing methods to slow the progression of MS.  Treatment of MS includes: tablets that are taken orally, self-injectables, which there are two types.  The injections are either subcutaneous, or right under the skin or intramuscular, which is right in the muscle.  And, there are infusions.  I am familiar with self-injectables, some tablets, which were taken to aid in my walking and what I am currently on now, the Infusions that go directly into the vein.

The current FDA approved treatments for MS are, Avonex, Betaseron, Copaxone, Extavia, Gilenya, Novantrone, Rebif, and Tysabri.  I am currently on Rebif after trying a few of the leading MS treatments.  My doctor and I have found that this medication is the only thing that at least lessens my relapses.  It hasn't eliminated them, but at least they are not once a quarter as they had been in the past.  

Now, ofcourse, all of the current MS treatments come with side effects.  For more information and a clearer picture of the drug type and when it was approved, please log onto www.nationalmssociety.org

Stages of MS

There are many stages, there is Relapsing-Remitting MS, Secondary Progressive MS, Primary Progressive MS, and Progressive Relapsing MS.  In Relapsing-Remitting About 85% of all initial MS diagnoses are RRMS. These patients have very few relapses then with a period of little to no symptoms for long periods of time.  

In Secondary Progressive MS, the stage that I am currently trying to stay within roughly 50% of people with Relapsing-Remitting MS will develop Secondary Progressive MS.  Usually this happens with ten years of a diagnosis.  Ofcourse, I had to prove that theory wrong.  I was diagnosed with Relapsing-Remitting MS in September 2003.  By August 2006 I was knee deep in my new diagnosis of Secondary Progressive MS.  In this stage of MS, your disability worsens and MS symptoms become much more pronounced. Also, in this stage of MS people are supposed to experience fewer relapses, their disability worsens and symptoms may become more pronounced.  In my case, my experiences of relapses have not become fewer, which leads me to believe that my MS is still progressing rather rapidly.

Primary Progressive MS is a steady worsening of your MS symptoms and your disability.  People with Primary Progressive MS do experience relapses, but also experience symptoms that may occasionally speed up, slow down, or even get better for a time.

Progressive -Relapsing MS is in about 5% of patients who have MS.  It means that the MS disability is steadily worsening and on occasion you do experience relapses.  

When being diagnosed with MS you have to become in tune with your body.  I know that my current diagnosis is Secondary Progressive MS, but I can also tell that my MS symptoms are worsening, I still have exacerbations or relapses and at times I feel like my health is worsening.  This will be a conversation to be discussed in detail with my neurologist.

 

To Cane or Not to Cane

Yes, I knew I was suffering with many relapses stemming from my MS.  And yes I knew that my balance was off, I had fallen a couple of times, but a cane didn't come into my conscious thinking, except once.  My mother, son and I were shopping and my mother suggested me getting a cane.  My son broke down and cried saying that I could hold onto him.  He would help me walk, he would be my cane.  Well, that nixed the cane. Well, at least at that moment.

I was having yet another relapse, sitting in my neurologist office getting the okay to have the intravenous solumedrol yet again, and in tears.  My doctor did all the standard test for vision, balance etc and with my balance off, vision off and my tears, he looked at my husband and bellowed, "Why doesn't she have a cane?"  My husband took one look at me and said the silliness and vanity were over and a cane I would get.  I was so sick and tired with no fight, all I could do was agree.  

The one big hurdling block was me telling my son.  I needed to understand the reason why my son was so adamantly against canes.  Later that evening I had to have a real heart to heart with my son.  I told him that my doctor said that I needed a cane so I wouldn't hurt myself.  His eyes filled with tears just wailing that he didn't want me to have a cane.  He cried, and cried as I held him asking him why.  He finally admitted that he was afraid I would be like his Pop Pop and be taken away.  I was confused so I asked him to explain.  He went on to tell me that Pop Pop was sick and started to use a cane, then he was gone.  He said he knew that I was sick, no I needed a cane, and he thought I would be gone to be with Pop Pop.

It all fell into place.

I talked to my son hours that evening that Mommy's fight was coming back.  And I assured him that if I tried to pass away that Pop Pop would meet me at the gate and tell me to go back and take care of his grand babies.  I told him that doctor's orders say cane and we would make a game out of it.  I told him if I had to use a cane, I, ofcourse had to be fashionable. So I needed them to match my outfits.  So he recruited his sister Kelsey, called Nana, and we were off cane shopping. Now, I have canes in all colors and styles.  Vanity still prevails. 

Am I happy I need a cane? No, ofcourse not.  But, do I need it? Ofcourse I do.  MS brings about a lot of changes, mental and physical.  Some vanity does go out the window. Am I happy with all the changes, no.  But they are my normal. 

Curly or Straight

Okay, this may not be a big issue for men, or some women, but, this is an issue for me.  Do I look better with curly or straight hair.  See, for years I got a perm twice a year to straighten my hair.  But after getting sicker and sicker, and my body being pumped with seriously dangerous and toxic medications I decided I ought not add to the mayhem and go natural.  Now, that being said, curly or straight.  My hubby is all for the straight, sleek and smooth.  Now, for people who don't understand, when having natural hair a straight, sleek and smooth look is by using a straightening comb and flat iron.  It sounds easy, but doing it yourself, not so much.  

Now, the curly look for me is easier.  I have a VERY difficult time in doing my own hair and hate bothering my sister in law who is an expert, so curly it is.  Curly just means I wash, oil, braid and roll. Voila! Curly do.  Now, here's the ruse.  My family is torn between curly and straight.  Like I said, hubby likes it sleek and straight so people can see the length of my hair.  My daughter says I look younger with the curly do, and my son, God bless him, whatever Mom does is cool.  

Well, anybody with natural hair knows it is much easier to have smooth, sleek, straight hair in autumn and winter.  You know why? Little or no humidity!  What I can't get through to my hubby is that keeping my hair sleek and smooth is REALLY difficult and I am afraid that keeping constant daily heat is not healthy for my hair and is damaging.  But, he still likes it straight.  But, today, it's curly.

See, MS is serious, but I can still focus on totally vain things, like hair.  Well, to make my hubby happy, I will call my sister in law, who works her magic and get my hair "done".  Then I will struggle to keep it straight and hopefully get some tips from her to at least keep it to a low roar. Wish me luck.  But, what do you think...curly or straight?

I Miss My Daddy

I was diagnosed with MS September of 2003.  I was able to continue to work with a few exacerbations, or relapses here and there.  An exacerbation is when your MS symptoms increase to a crippling stage.  This is when the oral prednisone comes in and the health care nurse comes to your house for what I call the "pit drip".  But, through the exacerbations or relapses I was still able to work and even excel at work.  I was the typical Type A personality. I was working, taking care of home, I felt like Super Mom.  Then, things changed. 

The year was 2006.  My health was going more down than up, but I was still functioning.  I was still working, I was having more relapses or exacerbations, but functioning. This all changed in March 2006.  We all noticed that my father was just not right, just not himself.  Yeah, he was still being Pop Pop doing all, being in all places all the time.  But, something was wrong.  He had a hacking, whet cough, he was losing weight, he was tired all the time. Just not...Daddy.  

We knew Daddy was really sick when he finally stated that he needed to be in someones hospital.  Mom took action.  That's when our lives began to change. Daddy was hospitalized, test ran and on April 29, 2006 the diagnosis came that he had terminal lung cancer. My whole world felt like it was spinning, collapsing, coming to an end. My foundation was broken.  My everything was leaving me, and it couldn't be stopped.  

I admit, I couldn't handle the diagnosis.  My exacerbations increased.  I was spending more time with home health nurses and taking prednisone than going to work.  My neurologist finally signed me out of work and my FMLA was approved.  But, Daddy got sicker, and so did my spirit and my will to fight MS. I didn't care anymore. 

Little did I know how little time we would have left with Daddy.  He was diagnosed in April 2006, and God took him home August 2006, just four months later.  My world had collapsed.  My Daddy was gone.  I know people say you go through the stages of grief and loss by Dr. Elisabeth Kübler-Ross, but I didn't.  I wasn't angry, I didn't bargain. I was just so sad, so depressed.  My MS took a turn for the worse, and I let it.  In my grief induced haze, I didn't want to be here.  In my grief, I figured my kids would be okay without me and my wish was just to be with my Daddy.  I didn't fight MS anymore, and MS became rampant.  I was have relapses once every three months.  Once every three months I was taking oral prednisone and on the IV for solumedrol.  I didn't care. It was easier to be gone than to be here and deal with the pain.  My MS diagnosis progressed from relapsing-remitting to secondary progressive. This is one stage down from the final stage of MS. But, I didn't care. I just missed my Daddy.

Yes, I prayed many nights not to wake up, and prayed that my children wouldn't be the ones who found me gone.  But, obviously, I still have things to do, things to say, children to raise. God refused to let me be selfish.  After five years, almost six years since Daddy has been gone, the relapses come maybe twice a year.  They are more controlled. The damage is permanent. My stage now is acceptance.  Acceptance that we have a new normal, acceptance that my Daddy isn't coming back, acceptance that my work here is not done, acceptance that the damage of my MS is permanent, the acceptance that I am not able to work, the acceptance that I am disabled.  But, acceptance, now that's something that comes in stages, and is still hard even today.  Will I ever get used to my new normal, no. But...I don't have a choice.

How Sad I Am

Did you know that clinical depression, the most serious form of depression is more prevalent in patients with MS? Well, it's true and I am one of the lucky ones, or should I say, unlucky ones that was/is diagnosed with clinical depression.  In MS there are so many chemical imbalances happening, we are more disabled than others, we are more reactive to situations due to our MS, and MS damages the myelin sheath or protective covering of the nerve in the brain.  When this is damaged behavioral changes can and do occur.

I do know that my clinical depression is something that I deal with daily, as I am sure that other with MS and clinical depression do as well.  Clinical depression is like a gray figure that follow you, hovers by you, wants to be as one with you, and embody you.  It wants to be your friend, but it is not.  It is a force that makes dealing with everyday normal stressors even more difficult, more annoying, more irritating. I am more fatigued, if that is even possible, I am so guilty because I don't feel like I am being a good mom, or wife. 

 Due to the MS, I normally do not sleep, but with my clinical depression, sometimes I have to ask, "What is a good nights sleep?" It is what it is.  I have tried a plethora of antidepressants.  The one I am currently on now is okay, but only because I take twice the dosage that was prescribed. (Note to self: speak to primary care doctor about increasing dosage of antidepressant.) Again, it is what it is.

It's Getting Hot In Here!

I have to tell you something right now, MS and heat really doesn't mix too well. Although people are excite about the warmer weather, I myself dread the warm, warmer and down right hot weather.  Many people of MS, like myself, suffer from Uhthoff's sign.  This is when your vision is blurred due to becoming overheated. It's temporary, but not very fun.  Ofcourse the problems with heat is all because there is little myelin on the nerve to conduct or allow electrical impulses.  All that means is that it is really easy to get overheated and feel just darn miserable.  

To combat the heat there are many little tricks of the trade.  I have to stay in the air conditioning, drink cold water, use of cooling neck wraps and bandanas, and wear light, loose clothing. Go to www.miracool.com for neckties, bandanas, cool vests, or better yet, you can go to www.polarproducts.com  If you purchase from this site 25% goes to the MS society. A win, win.   These tricks help, even though they are a bone of contention when I am around relatives and they are shivering and I am just divine. Sorry family, love you though. 

A Handy Cooling Neck Tie

I Know It, I Know It...I Don't Know It

MS is a very sneaky, pain in the butt chronic disease.  I have to remind myself that I am educated.  I have a couple of degrees, so I don't think I would call myself stupid.  But with MS, that is all slowly changing.  The more advanced this disease becomes, the more it eats away at my cognitive abilities. It is so frustrating that words fail me. Concepts that I know I know seem to elude me and get harder and harder to pull up.  MS has affected my word finding, so much so that I need my family to help me fill in the blank.  I mean, I know the word, but it just escapes me. 

I've also noticed that my memory i.e. acquiring, retaining, and retrieving new information is a problem.  I try very hard to keep my brain together. Well, the only thing that I am doing is Big Brain Academy on an old Nintendo DS that my daughter gave me after she received the New Nintendo DSi.  But hey, hand me downs are good, and this game is good for the brain.  It has to remain active. 

There are so many things to this cognitive problems that just grates.  My visual perception sucks, my conversational skills are lacking, ofcourse, due to word fluency and trying to find the word that again I know I know. My long term memory is taking a hit, so I find myself reviewing pictures constantly to jar my  long term memory. And for the time being it seems to be working. Oh yeah, reading comprehension.  I love to read. But, I am finding out that I have to reread some paragraphs to get the true understanding of what the author is trying to convey.  So, I usually stick with really easy breezy reads.  With that being said, I still have to study for continuing education units is quite a struggle.  I am determined to keep my license for being a social worker.  I worked hard at getting that license and I am keeping it.  Plus, I'm still holding onto the hope of working again.  Though, sadly, my body has other plans.

At least my problems with my cognitive skills is a running joke in my household. You know, sometimes you have to laugh to keep from crying.  My son laughs when we clean the kitchen and he is putting up the food and I tell him don't forget to put the food in the garage.  He laughs and says, "I know you meant the fridge Mom, it's okay."  I have to write list on my Blackberry, then I forget to look at my Blackberry.  I think I may have to update my phone to ping/bing or do something to alert me that I need to be doing something or going somewhere.  Daily routines do suffer.  I am great at covering up, or either my family just chooses to ignore the fact that I, who used to be Super Mom, has lost some of her luster.  MS has become my kryptonite.

There Has To Be Another Word For Fatigue

There is fatigue, and then there is MS fatigue.  MS fatigue is just a totally different beast.  And the problem with fatigue is that it's all day, everyday.  I pray each morning as I lie in bed to just give me the strength for the day.  See, that's the thing with MS, the unpredictability of the disease.  There are days when it is tolerable, but then there are the days when I often think, how in the world and I going to make it through this day.  I would love to make plans with my friends over the next couple of days, and I do.  Then the day comes and I can barely get out of the bed, I can barely function.  This ofcourse, leads to me cancelling out on my friends. This, unfortunately, leads to isolation.  MS and its unpredictability and extreme fatigue leads to isolation.  This will be discussed in detail later on.  It's a sad thing.  

The MS fatigue is like dragging weights around your neck, your body, and your legs. It is unrelenting, never ceasing, and daily.  Again, sometimes the weights are bearable, but with the progression of my disease, the weights are getting heavier and heavier with each passing day.  But, MS or not, life has to go on.  I am still a mother, a wife, daughter, granddaughter, sister, aunt and sister and daughter in law.  Life must go on, no matter what the fatigue.  Most days all you can say is, "Lord help me."