What Is That I'm Seeing!?!

What Is That I'm Seeing!?!

I have always had some slight issues with my eyes. I have an astigmatism.  I am nearsighted, which means that I have problems and need glasses or corrective contacts (that I don't have the courage to touch my eye so I don't wear them) to be able to see distances.  The problem is that with advanced multiple sclerosis is that it wrecks havoc on your eyesight.  I am now wearing glasses just to see our big screen TV because without them everybody is blurry. Such a shame.

I have noticed that when I was off of Tysabri, back on Rebif, before I was put back on Tysabri (I had reached that grey area of Tysabri treatment of being on it for 2 years plus and my neurologist a little concerned because the study timelines stopped at 2 years and he was concerned regarding PML), I at this time started having not only debilitating pain, but problems with my eyes, especially after having a relapse. I have discovered that I have developed what my opthamalogist has called iritis. Iritis is an inflammation in the eye which causes eye pain, especially when exposed to bright light.  It includes blurred vision and redness in the eye, especially around the iris.

My last relapse, this past September, resulted in another all day trip to ER, and followed a long trip to the opthamalogist to confirm, yet again, that I had irisitis. I have noticed that with my advancing MS that my eyes are in fact, getting weaker and I am having more problems.  People with MS have to be diligent with keeping their eyesight and vision healthy.  In fact, vision problems are usually one of the first symptoms of relapsing MS, which is usually temporary.  But, persons with MS will find out that as your disease progresses, problems with your vision will persist i.e. double or blurred vision, eye pain, and at times, spots or floaters in the eye.

So, what it is that I am seeing is now...a floater.  Since I have a MS diagnosis, I will be having yet another eye exam, and a peripheral eye exam to make sure that there is not something else that is lurking behind the annoying black dot that swims in in front of my pupil.  Although I am really over seeing doctors, sometime, seemingly daily. I know that health encompasses many different faculties.  Regular physicals and eye exams are needed, especially for MS patients due to the side effects of the many medications that we take.  Dealing with MS is chore enough, but, it will be more of a chore is something else in your health fails i.e. vision.  

So, I may complain. I may hate going to doctor after doctor. But, I have a choice. I could refuse all treatment and let the proverbial chips fall where they may, or try to maintain my current level of health and catch something early before it becomes an issue.  The choice, really, has already been made for me.  I look at my two children and know that I want to continue being able to be a "seeing" mom.  I take physicals to know that my cholesterol is high due to the many, many, many relapses treated with steroids and that is an issue to which I am addressing through a change to a low fat, almost vegetarian diet. (Don't hate me because I still eat meat...I'm trying). And regular exercise, definitely on the days when I am having a good day. And, I am taking supplements for added health i.e. Vitamin B12, Fish Oil, Vitamin D, Multvitamins, Kelp, Vitamin K, Vitamin C, Vitamin E, Evening Primrose, and whatever else my mother, after watching Dr. Oz. brings over.  

Look, I know dealing seemingly almost daily with doctors and nurses can be a bit much.  But in the long run, it will all work out.  I am determined that I will be preventative and proactive in my health because I definitely want to see more birthdays. And not just more birthdays, healthy birthdays.  So, I am closing now, with my floater in my eye, I will make my appointment for yet more eye exams and I will grin and bear it because...seeing....is believing.
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You Look Like The Picture Of Health!

You Look Like The Picture Of 

Health

I get up daily, thanking God for another day. And most of all, thanking him for the use of my limbs.  As a child I remember that an old mother of the church used to say this prayer when she led devotion.  I can almost hear her thanking God for waking us all up in our right minds, and the use of our limbs.  This mother of the church, with age and dementia no longer has either of these faculties.  But, I believe in mercy and faith, so I now say this prayer.

MS is such an insidious disease.  So insidious, and covert.  It is such a hidden disease that many times people see me, speak to me, ask me to do things, but when I tell them my limitations, my affliction the one phrase that I hear is, "But, you look like the picture of health."  I guess I should think of this as a compliment, but what am I supposed to look like.  I look like myself. Carla. I am up everday, shower, dress, do my hair, put on some makeup, to yes...sit in my home while my children do online schooling. I do this everyday, no matter what.  No matter the good days, no matter the string of bad days.  My father told me to always get up, fix yourself up. That's half the battle and maybe, just maybe, you'll feel better. Some days this is true, most days...it is not. 

I know people look at me and don't see my illness. And that's okay.  I don't want to be a burden to friends and not even my family.  My children, and my mother ask me daily how I am feeling. My answer is always the same.  My answer is, "I'm okay!"  I pray that one of these days I will mean it. Until that day, that is my story and I'm sticking with it.  So, no, I keep the daily ailments to myself.  I log them into my phone to remind me to discuss with my neurologist because MS is affecting my mind.  I don't tell anyone about the crippling fatigue, the numb feet, the constant MS hugs that I feel, the insistent itching at night that keeps me awake, or the deep bone itch that cannot be scratched.  I don't let them know when I run into a wall because of balance problems, I don't alert them that at times my attention span is lacking, my concentration is a problem and I am afraid of the cognitive issues of the disease.  No, I don't alert them to the constant anxiety I feel, the depression that hangs around like a old friend. No, I don't alert people to the feeling of heavy weights constantly on my legs. No, I will not tell you about my facial and hand twitching. No, all this is just for...me.

No, when people see me, they see Carla. Carla at whatever her best is that day. Carla with a smile, and easy laugh, and sitting in a chair to constantly rest her legs.  So, thank you for telling me that I look like the picture of health.  No, it's not for you to know how things really are and if I told you, would you really care? So, I will take your statement as just that, a statement and I will smile, say thank you and pray that I have the energy to get up from the chair, walk to my car and head home.

Hi, I am Carla. I have advanced stages of multiple sclerosis and people say I look like the picture of health.  But...looks can be deceiving.


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Sometimes You Just Have To Go With Your Gut

Sometimes You Just Have To Go With Your 

Gut

I have to admit that I go to the doctors'...a lot.  I have new insurance so it seems like instead of reading my chart, I get tested and retested and retested then to find out that things are normal. Among the many appointments for my MS, there are other health issues for women over 40, like taking an annual mammograms.

To be truthfully honest, I have dense breast and coagulated milk ducts, which always show up on a mammogram.  This ofcourse is well documented by my previous insurance company and my previous doctors.  All this being said, after my yearly mammogram the fun began, yet again.  Maybe because none of my doctors have read my previous medical history. 

After my annual, I was called back to get more scans. Then after the scans I had to have an ultrasound.  This was quite unnerving as the technician is telling me as I have my ultrasound that if things don't look quite right I would be immediately ushered down the hall to have a biopsy.  I have always been an opponent for prayer and starting praying that this was just unacceptable. 

Needless to say, after the ultrasound I was allowed to go home and later on that day I received my results stating that  I have present in my breast a fibroadenoma cluster, or could possibly represent an
intraductal papilloma.Now, both of these could be benign and I claim that they are and I was told to come back next year for my regularly scheduled mammogram.

This would have been great had I not called my primary and told her that in that particular breast I had some twinges of pain occasionally. I was scheduled immediately for another breast exam. The nurse told me that this was necessary to make sure that there were no lumps, inflammation or dimpling of the skin and no nipple discharge.  I ofcourse raced into the office, ofcourse, exhausted as I usually am to get yet another breast exam.  

On this breast exam, my breast looked normal, no dimpling of the skin, no inflammation, no redness, no lumps, and no discharge.  Yet, if my doctor had read my previous history, all of this would have been understood that I have wacky breast.  But, my doctor, and yes I know she is playing it safe, signed my up to go on yet another appointment to see a breast surgeon to see what she has to say.  Annnnddd...here we go again.

Now, I don't want you to think that I am casual about my overall health, and casual about the risk of African American women having breast cancer. But sometimes, you have to think for yourself on whether you want to go through unnecessary testing, poking and prodding.  So, after discussing this with my husband, and mother, I decided to thank my primary for the referral to the breast surgeon, ask her to keep the referral active just in case my breast changes and come back next year for my annual mammogram.

In the meantime, I have been focusing on my change of lifestyle to combat MS symptoms and now I will continue to change my lifestyle to combat possible cancer.  I am overweight. Well, according to my chart I was obese and now I am overweight.  My BMI needs to continue to go down.  With my overall MS diet, I will continue to go lean to become lean.  I know that being overweight is a health risk factor for breast cancer, so I am working on lowering my numbers.  My diet now is full of fresh or frozen produce,  green tea, olive oil, fish oil supplements and exercise.  I am determined by next years mammogram I will be of healthy weight, health HDL and LDL numbers and my mammogram will be normal.  As a patient, I do take my health serious, but I don't want medications and procedures pushed on me when taking control of my lifestyle should be the first preventative step.    So, I am going with my gut and saying I am procedured out and I will see you again for this issue, next January.