Ghosts of my past

When I was growing up I was taught that the man my mother married shortly after I was born was my father. He turned out to be a child molesting asshole. Fortunately I do not remember the time I spent with him and I can barely remember what he looked like. What I do remember of him were the countless psychologists with their dolls where they asked me to tell them what my father did to me. I remember he went to jail and that is the last I saw of him until I was 18, and that was by chance that he happened to come into a store I worked at. And by chance, I was able to hide in the back of the store until he left.

My mom had another friend when I was growing up. He was her best friend and the closest thing I had to a father. I won’t use his real name here, in part because saying his name over and over would not allow me to finish this story without breaking down. It is a name that has been banned from my lips and banned form my thoughts. Today, we will call him “Mike”. Mike was an older man, 10 yrs older than my mother. At the time that my mother had me, Mike was going through a divorce from a marriage that resulted in two children and one very psychotically challenged wife. What is strange about this is that I grew up around Mike, and his ex-wife who spent a lot of time at his house.

Mike had his own vices. He drank everyday, he hung out with drug addicts, he snorted coke, and in the end, he decided he liked girls much younger than him, but only if they were his children. Mike wasn’t the great knight in shining armor that he made himself out to be but it took a long time for others to see it. Mike’s daughter ran away and got married right after she turned 18. She got as far away as she could and built a life for herself that didn’t involve Mike. Mike’s son… well, let’s just say the apple doesn’t fall far from the tree. He got caught up in drugs and has spent his adult life in and out of jail for one reason or another.

I was 9 yrs old when Mike told me he was my real father. I went to my mom and asked her about it and that was when she told me that there was a possibility that he could be my biological father. She never told me this because she didn’t want to hurt me and she didn’t want to confuse me. To me, this was great news because I always loved Mike like a father and he was always there for me.

Mike was a fun guy. There was laughter and music. He would start tickle fights. Sometimes his tickles would go in places they shouldn’t but it wasn’t so strange as for it to be a big deal. Mike used to play practical jokes. He used to come up to the window that was above the bathtub and yell “boo” while you were in the shower. This began to happen almost every time I would take a bath or shower. And he never yelled “boo” until you looked up and saw him in the window, staring down on you as you were naked and helpless.

There were only 2 bedrooms at Mike’s house. One belonged to my sister. She and my mother could not get along so my sister moved in with Mike, even though he was not her father. Since there were only 2 rooms and “my brother” (Mike’s son) always slept on the sofa in the living room, I somehow got stuck sharing a bed with Mike when I would come over. There were times that I did not remember taking my clothes off in my sleep but I must have because I know I had one a t shirt and undies when I went to bed and I would wake up naked. It was kind of weird, I never did that at home. I believe I was 11 or so when this started happening. Mike used to comment on my body changes all of the time, pointing out that I was getting taller, my hips were getting fuller and I was developing “buds” for breasts. He always paid particular attention to my body.

Mike had a house on a lake that we would vacation at every summer. There were times when mom could not get off of work to go with us and we would go with Mike. It was a pretty cool place and I actually had my own room there. One summer, when I was 14, Mike invited my best friend to come with us, and somewhere during the course of this trip he tried to convince us to go skinny dipping with him. We refused of course, being shy teenagers and all. He had no problem stripping naked and getting in the water with us. I remember waking up the next day with Mike on top of me, naked. He had pulled my shirt up and had one hand on my breast and was holding himself up with the other. I drew my knee up into his nuts as hard as I could. I then pushed him off of my bed and left the room. I went out to the dock and sat there, unable to feel any kind of emotion about what just happened.
When I went back inside, Mike was making breakfast for everyone and pretending like nothing had ever happened. I spent the rest of the weekend avoiding him like the plague. I barely slept at night for fear he would come back and I was jumpy. I was scared of him, scared of the idea of him. Scared to tell anyone what had happened, and a part of me was scared to lose the only father I had ever really known.
We went home. I was too shocked and embarrassed to tell my mother what had happened that week. My best friend spoke up to her mom and told her about the skinny dipping idea and her mom told my mom… you know how the grapevine works. So she sat me down and asked me about it. I cried. I told her about the skinny dipping idea, and I never let her know about the rest. She was livid. She was angry, hurt, betrayed, and she was so concerned about me. She kept asking if anything else had happened, and I kept telling her no. I didn’t want to hurt her anymore than she had already been hurt and I knew if I told her what really happened she would most likely kill Mike. I mean she does have a gun and would literally have killed him. So I didn’t tell her.
Mom stopped talking to Mike after that. My sister on the other hand, well she still talked to Mike. She still talks to him. She allows him to be alone with her children, she has all faith and trust that he is a wonderful man and not the monster that I know him to be. When I was 18, I was at my sister’s house babysitting when Mike showed up looking for her. I slammed the door in his face and burst into tears. I was terrified. A few weeks later, I wrote my sister a letter, telling her everything that happened and begging her to please stop taking her children, my niece especially, around that man. She responded by telling me she didn’t believe one word I said, told me that my mother had brainwashed me into thinking Mike was a monster and that she was not going to stop talking to him, no matter that it killed me inside.

I still have nightmares about Mike. These have changed over the years. The nightmares that used to haunt me were of what could have happened, what did happen, and a complete feeling of helplessness. My new nightmares involve bumping into Mike and himtalking to my daughter. My new nightmare is that my daughter will find out about Mike and she will know that I have lied to her since she was little. When my daughter asks about my father, I tell her he died when I was little. In a sense it is true. He is dead to me, a part of my life that died a long time ago. It is easier for me to think that he is dead than to know that he is alive and still able to hurt people.

It was after all of this took place that I realized why his daughter (my sister) ran away and got married when she turned 18. I found out years later that he had been raping her and she could not stop him. For many years I was angry with her for it. Not angry about what happened but angry that she did not tell anyone. She did not try to stop it, and she knew he was alone with me. She knew he would probably come after me next and she did nothing to stop it. Then I realized my anger was my own cowardice because I had not spoken up. I had done nothing to stop it.
My life began taking a nosedive at this point. By the time I was 16, I was getting in trouble at school, smoking weed with my friends, I became interested in body piercings, sex, drinking, all things I attempted to use to cover up my feelings. I tried to take my mind other places because I didn’t want to face the reality of what had really happened. I didn’t want to think about my first period and the fact that it didn’t hurt when I used a tampon. I didn’t want to think about my first gyno visit when the doctor accused me of having sex and calling me a liar when I told her I was a virgin. I didn’t want to think about the things that my mind had managed to block out for so long. I just didn’t want to see it. I didn’t want anything to do with my sister who called me a liar, and didn’t believe what I told her when she was the only one I ever told what really happened. I didn’t want to have that happen with anyone else, so I didn’t tell anyone else and it ate me up inside.
When I was 19, I started having a lot of depression, this is when I was diagnosed as being bipolar. I went into counselling to help me deal with all of this. I spoke of my concerns for my niece, I spoke of my heartbreak with my sister. I had heard through the grapevine that my father was asking for custody of his ex girlfriends little girl because she was going to jail for her cocaine habit. I decided it was time to step up and do what his daughter never did for me. I decided to stand up and try to stop it from happening to anyone else. So I met with a police officer who took a report. A week later her called to inform me that I did not have any evidence to support my claim and without evidence no charges could be filed. My father was granted custody of this child, she had an illness that killed her a few years later. For some reason I was relieved that this child died so young because I felt like it was the only way to save her. Every time I would go to counseling after that she would try to dwell on my feelings about all of this and try to make me face ghosts that I wanted to bury. I stopped going to counseling after that.

Like I said, my sister still talks to this man. Still relies on him for money, still calls him her dad and still thinks I made the whole thing up. This is the same sister who spent 3 month in jail because Mike caught her writing checks out of his bank account. And who take care of her 2 kids while she was in jail?? It wasn’t Mike. It was ME. Her sister. The devoted sister who stood by her side through all of it. The sister she later called a liar.

I know other people who still talk to Mike. They don’t know what happened between us because I never told them. I know that in Mike’s living room is a picture my sister gave him of my daughter and her children. I know that Mike asks about me every time he sees one of those friends and I know that he knows what is going on in my life.

Because of this, I cannot forgive my sister. I cannot be friends with her, and I cannot get over my hurt which has manifested itself to sheer rage over the last 11 years. Every time I see her, I am reminded that she picked him over me. Every time I talk to her I realize that I do not like her. If we were not sisters, I would not be friends with a person like this. And I somehow feel guilty that I want nothing to do with her. I do not send her pictures of my kid anymore. I do not chat with her and the only contact we have is when she comments on my facebook posts. I see her maybe twice a year at my mother’s house. She does not know where I live and I do not know where she lives and I am perfectly OK with that. We were never close growing up as she was almost 10 years older than me. Aside from genetics, we have absolutely nothing in common. I feel bad that our relationship effected my relationship with my niece and nephews. I feel bad that I am not there for them when their mom and dad have spent the last 14 years making each other miserable. They finally got divorced. She left him for a married man with 6 children and she has no shame in telling the world she loves this adulterous man. I have absolutely no respect for this woman but I would feel guilty deleting her from facebook because she is my sister.
I have never been able to tell her how I really feel about the whole situation. Maybe one day I will be able to, but I do not have the will to start that war and I know my mother will be dragged into it. I know my mother would choose me over my sister and my sister knows this. I think that is one reason she still clings to my father because she knows my mom would choose me. She knows my mom is there for me no matter what and she knows if it came down to saving a life and we both needed a kidney, my mom would give me hers and would let my sister die.

I decided to share this story after writing it because I know there are others out there, others like me who have been through this and I want them to know that they are not alone.

Just fix SOMETHING!

In the last 2 years, the numb patch of skin on my leg (which lead to being diagnosed with MS) has set off a scientific treasure hunt of every doctor within a 50 mile radius.

What they are currently drugging me for/ treating me for today:
* MS- I now have 36 holes in my brain and spinal cord, all over 55 mm in size.
* Grave's Disease/ Hyperthyroid (which we knew about 10 yrs ago. 6 yr ago we killed my thyroid, but the MS meds have created a zombie thyroid that has come back o life to take over the world.
* 4 broken bones in my spine- 2 of which were from me falling a whole 8 inches (7 months ago), the other 2 are from meds/ physical therapy used to treat the first 2.
* Degenerative Disc and Degenerative Joint Disease
* Osteoarthritis
* Optic Neuritis
* Neurogenic Bladder (my brain no longer tells my bladder how to empty.
* Bipolar Disorder/ Depression/ Anxiety (well, duh, ya think I might be a little depressed?)
* Chronic Fatigue
* Insomnia (yes, I have both)
* Torn Hip Flexor/ Bursitis
* Pinched Sciatic Nerve
And I am sure there are more dx's to add to the list that I may have forgotten... did I mention I have MS and holes in the brain, so I tend to forget things?

And in 2 years time: the countless doctors, nurses, the over 100 doctors appointments, the 30 trips into the MRI machine, God only knows how many needles and blown veins (I would guess this to be around 80 veins, and more needles), and over $200,000 billed to my insurance company... and all of my doctors, specialists, nurses, surgeons, radiology techs, IV Therapy team, at home care... they have all worked so diligently in the last 2 years to...? You tell me. They have been unable to fix the first damn thing! Not a single thing on that list.

They have medicated me, infused me, shot me full of drugs, convinced me to shoot myself with needles, my current pill count is 22 a day plus a monthly infusion... ha and I am still in pain, and I am still broken. I have tried acupuncture, chiropractic (which was helping for pain but I have 4 broken bones in my spine and he cannot touch me), dieting, physical therapy, praying to whichever God would listen, everything short of voodoo and believe me, if I thought it would work, I would try it. I have been banned from: bending, lifting, working, drinking, going outside when it is hot, standing, walking, they tried to ban me from sex! They are working so hard to save my life but they have not realized that I no longer have one.

At this point, I wish to take this list and attach a reward. The first doctor who can fix one thing... I don't care if it is the back, the thyroid, the bladder, or whatever. But it has to be one of the things on this list... so let's start a collection for the reward. You guys want money? Body parts? I will give you a kidney and two ovaries full of eggs that I am not using! Anything you want. JUST FIX SOMETHING!! I have lost all faith in the medical community at this point. Or maybe it is just Virginia Doctors and I need to move?

So, I am scheduled to go in Thursday for cortisone injections in my hip. I am not wagering any money on whether it works or not. I am curious to see if this doctor can do what no man has done before, or if he will be your typical doc who fixes nothing and finds something else wrong with you. I am trying to be hopeful, but this is the same doc who sent me to the surgeon about my back. I set myself up for a huge disappointment with that one. Bouncing off of the walls excited that I would be getting the surgery and it would make the pain in my back ease up some, only to have those dreams crushed and being sent home in tears.

Yes, I have become angry, and bitter, and frustrated. I will not apologize for this. I have been playing lab rat for 2 years and it sucks. Oh and that is not the whole list of what they have found in the last 2 years, this is just the list of things that decided to "treat".

Life sucks today... and yesterday... and they day before that...

I am dying. And I know that I am dying. My body is systematically shutting down piece by piece and no matter how hard I try to fight it, it will not stop. It’s hard to face your own mortality, especially when you feel like a prisoner trapped inside of your own body. I am depressed, and I am in pain, and I am lonely. Even in my own house surrounded by the people I love the most, I feel so alone all of the time.

I can’t talk to them about it. And even if I could they wouldn’t want to talk about it. For my friends and family, the idea that I am a mere mortal is somehow unfathomable. I should live forever and pretend that I am not dying. Maybe if we ignore it, it will go away. Maybe if we fight harder, it will stop. But don’t you dare give up! You are not allowed to give up.

It would have been so much easier if I had lost my mind first. At least then I would not know what was going on. I would gladly welcome insanity if it meant not fully comprehending the reality of the present. I would choose death before deciding which part of me I want to sacrifice to save the other, yet that is exactly what I am doing. Too many people depend on me and I made a choice years ago that no longer allows me the luxury of the self indulgence of death.

I am smiling on the outside but on the inside I am screaming, calling out in vain for help, for mercy, but they never come. I awake in pain every morning as a reminder that is my life. I want to run away but I know it would do no good. I simply cannot shed my body and run away. This monster lives inside of me. It is taking my body and destroying my soul one poke at a time.

I can scream, and I can cry, and I can throw things, and I can fight this, but it would still be here, this monster inside of my body. I cannot escape it, and I am not yet ready to give into it. So what do I do? I am so tired of doctors and specialists and nurses and medications and needles and … I am just tired. I keep running the gauntlet and I keep fighting and at the end of the day I am left wondering if it is even worth it. Is it worth the energy and the pain and the side effects? Is it worth giving up my life, everything about me and everything that I was, trading it all in to be the patient? Doctors are working diligently to save my life but I ask what life they are saving? Who are they saving because it damn sure isn’t me. I do not know this person I have become. I do not like this person that I have become, in fact I hate this person. I mourn the loss of my old self. Yet it’s her reflection I see when I look in the mirror, another reminder that this is really happening.

Why does life have to be so damn hard all of the time? Why can’t I get good news from a doctor just once? Why can’t I wake up and not feel the weight of the world closing in on my and watching it shatter and fall piece by piece? Am I ever going to wake up from this nightmare? How much can one person endure before they reach the breaking point and just lose it?

The Enemy Inside

There’s an enemy in my body, slowly chipping my life away.
I can feel it all of the time, it’s with me every day.
I am so tired of hurting, tired of the constant pain.
It’s killing my body, making holes in my brain.

There’s an enemy in my body, making me lose my mind.
The path back to myself something I may never find.
I am fighting a constant war, which no one else can see.
Trapped in my own prison, I will never be free.

This enemy in my body leaves me feeling broken, tortured, and scared.
New demons to face tomorrow, constantly feeling so unprepared.
There needs to be an answer, there needs to be a cure.
I cannot take this sorrow, this pain I cannot endure.

There is an enemy in my body, reminding me this battle is wages on inside.
With each breath that I take, I face an emotional whirlwind inside.
Not ready to give up yet, this monster I want to fight.
Each day it reminds me that it is taking away my life.

Coping with Numbness and Decreased Genital Sensation

Genital numbness how to cope…

Did you know that over 80% of men and women with MS are effected by sexual and intimacy problems? This is not surprising when you consider that one third of women in the general population cannot achieve orgasm with penetrative sex when there is no clitoral stimulation. One of the more pressing issues for both men and women with MS or other neurological disorders is a loss of sensation, not only in their limbs but also in their genital area. So how does one cope with this loss of sensation and maintain a healthy sexual relationship with their partner?

I have said it before and I will say it again; there is a lot more to an intimate relationship than sex. That being said, there are some things you can do by yourself or with a partner to keep your relationship on track when those numbness issues arise. I have gotten advice from several people on this topic and I would like to thank each of them for their input.

Some things to consider:

Talk to your doctor- This is easier said than done, but like your other MS symptoms you should be able to talk to your doctor or nurse about sexual problems you are having. Believe me, there is nothing you can say that they have not heard before, especially an MS specialist. Your doctor may be able to prescribe medications or change the dosage on your current medications that may be aggravating your sexual symptoms. Certain medications, especially anti-depressants are notorious for not only decreasing your sex drive but also decreasing you ability to achieve orgasm. Seizure medications that are often prescribed for hypersensitivity can also lead to numbness in genital areas. Sometimes it is just a matter of changing the time you take certain medications. Your doctor is an invaluable tool for your wellbeing and sexual health.

Toys, Vibrators, Clitoral Stimulators- There are so many sex toys on the market today, each designed for different purposes and needs. Vibrators work wonders for loss of sensation especially this meant for external stimulation such has clitoral stimulators. There has also been a boom in the industry for toys geared towards helping men achieve orgasm; from oral sex replicators to prostate massagers and vibrating rings. Toys come in so many shapes, sizes, colors, and materials that I can honestly say there is something for everybody out there. One that I highly recommend to almost everyone is to try a vibrating cock ring with a clit stimulator. It is a toy that is used together, the vibrations are an added stimulation for both you and your partner.

Lubricants- There are many types of lubricants on the market today. From water based, to oil based, scented, edible, or even warming gels. The latter have been shown to be effective for those who still respond who hot and cold even though there may be a loss of sensation or numbness. For those who suffer a loss of sensation or have a hard time achieving orgasm, lubricants can help reduce friction during intercourse making penetration more enjoyable.

Oral Sex- Some people, especially women find that oral sex is more pleasurable than penetration when they are experiencing loss of sensation or numbness due to increased focus on their outer genitals and clitoris. Mints and those Listerine strips make for great fun in the oral sex dept and help increase sensitivity. Some novelty companies go so far to sell mints specifically manufactured to be used during oral sex. Ice can also come in handy during oral sex.

Ice or Heat- Can be used to help increase sensitivity also. A lot of times, when there is numbness in an area there is still a sensation with hot and cold. Try alternating and see what works best for you. This is when I would recommend trying some of the liquid filled E-Glass toys that can be placed in the freezer or in hot water to change the temperature. There are also some amazing vibrators that include infrared heat, which give you both the heat and multi-speed vibration for added pleasure.

Electrical Stimulation- One of the newer toys that recently peaked my interest was one a friend inquired about called the Violet Wand. It is almost like a tesla ball for your sensitive areas. It looks quite interesting, but it is very expensive. There are much less expensive options out there from TENS type of units to electric anal plugs. These have proven to be very effective for a lot of people, but be advised there risks associated when you bring electricity into the bedroom. Be sure to read the risks and take the necessary precautions as advised by the manufacturer.

Kegel Exercises- Kegel Exercises work great for keeping your pelvic floor or PC muscles toned, and they are not just for women. Men can also benefit from toning their pelvic floor muscles. The muscle is similar in both men and women, stretching from the pubic bone to the tail bone and forming a hammock-like floor that supports the organs of the pelvis and contributes to the function of the sphincter muscles. Kegel exercises have multiple uses for men and women. They are most commonly recommended to help with bladder and bowel control. Keeping your PC muscles tones will also help alleviate menstrual cramps, and ease childbirth. Sex can be more enjoyable by both parties as the toned muscles will contract better during sex making it feel “tighter” for the man and also giving stronger contractions during orgasm for a woman. For men, Kegel exercises aid in achieving an erection and can also help prevent premature ejaculation, as well as helping to maintain prostate help. The exercises are easy to do and can be completed anywhere at anytime. I will go into more detail about the importance and proper way to exercise your Kegel muscles in my next article.

Body exploration- Just because you may be numb below the belt, that does not mean that there are not other places on your body which would be pleasurable to touch. The best way to do this is to explore one another’s body. A fun game would be to blindfold your partner and caress different areas of their body with different textures (like feathers or a hair brush). This may be a good time to play with heat and ice. Use your hands or mouth to explore one another. You find sensitive areas you may have forgotten about over the years. Relax and have fun.

Changing positions- Some positions give greater access to more sensitive areas of your body. One that was recommended was to try placing a pillow or wedge under your hips to elevate your genitals during intercourse. Another recommendation was to hang your head over the side of the bed (not really sure how that works to help achieve a better orgasm, but what the hay?). Sometimes all it takes is a quick flip or a tilt of the hips to reach that coveted orgasm that lurks behind the numb outer shell.

Electrical stimulation to treat Erectile Dysfunction?

I was caught up in an article earlier about electrical stimulation in various parts of the body. There are many claims about electrical stimulation(ES), but one in particular I was interested in finding more details about and I cannot seem to find any conclusive answers online.

I have seen products advertised with ES such as the belt that goes around your waist which supposedly tones your muscles and gives you great abs without working out, or the one that is made for women that does essentially the same thing to increase breast size. Some of you may remember the experiment with this particular device last summer. For those who don’t, I was asked to review this product which was a 6 week (twice a day) experiment. Although I did see an increase in firmness, there was no increase in size.

The newest one claims to have the same effect on men in the treatment of ED. The theory is, by applying ES the muscles of the penis are stimulated, or exercised therefore making them stronger and more sensitive to other forms of stimulation. I am wondering if this is theory rings any truth? I mean, in theory it sounds plausible. But in actuality, does it work? And does the result outweigh the risks?

“While it may be true that EMS does enhance muscle growth and recuperation, there is no clinical or therapeutic evidence that it causes muscle hypertrophy in normal individuals at this time. Electrical stimulators definitely get your muscles moving and you do feel as though you worked out. However, they do not provide the resistance that weights do. The electricity forces your muscle to contract and the part of you body attached to the muscle moves”(Rutgers). But with a lack of weight or resistance being added, it is unlikely that you will see any significant muscle mass from this therapy.

Obviously playing with electricity comes with risks: shocks, burns, infection, tissue damage, interference with heart function, to name a few. When I think of electrical stimulation, the first thought that pops into my head is the TENS Unit. “TENS” is an acronym for Transcutaneous Electrical Nerve Stimulation. This unit works two ways. One, it interrupts the pain signal going to the brain from the effected area. Two, it also increases endorphins (the body’s natural pain killer). Which of course leads to question the validity of the second part of the claim; how does ES help increase sensitivity to other forms of stimulation on the penis?

Feeling attractive when you have MS

One of the most common complaints that I have heard from fellow MSers is “It is hard to feel pretty when you are having an attack”. And this is very true. Balance issues deny you the ability to wear those sexy high heeled shoes. The creepy crawly skin feeling makes wearing clothing unbearable and you can forget about the frilly lacy lingerie. You stumble around like you are drunk, for many of us, we are dependant on wheel chairs and walkers. The bruises that accompany the injections and the blown veins from the IVs don’t help us to feel anywhere close to “pretty”. A lot of days, spending time on hair and makeup robs us of the energy we need to complete other tasks, like getting dressed. The lack of sleep has left dark circles under our eyes, and the fatigue makes us want to crawl into a ball and sleep for days. MS tends to rob you of that sexual image you once portrayed.

When I brought up this issue with my neurologist she gave me an invaluable piece of advice: Ignore messages and stereotypes about beauty from television, magazines and other media sources and embrace your body for what it can do. My best advice is to try to take a day off for yourself whenever you can. There are going to be days, weeks, sometimes months when this is impossible. For me, I pick a day when my daughter is at her dad’s and my significant other is distracted with some other task (work, school, yard work) and I have the day for myself.

As much as I would love to spend the day at the spa, it is one of those luxuries that I simply cannot justify. Plus, for me I enjoy doing these things at home more than in the care of strangers, and if I want to take a nap, no one can stop me. I start by turning off my cell phone, stepping away form the computer and locking myself in my bathroom.

Start with a bubble bath. Amazingly simple, isn’t it? You may notice that you can no longer enjoy the steamy hot baths that once were. But a warm bath, light some candles, put on some soft music and add your favorite ingredients. For myself, I make my own bath salts which I keep in stock in different scents in my bathroom for this very occasion. Glass jar, 2 cups Epsom or sea salt, 4-5 drops of your favorite essential oil (I like lavender or sandalwood, sometimes I mix sage and citrus), and ½ cup dry milk powder. Mix it all together just as much or as little as you like, I also add a drop or two of food coloring which changes the color of your water and does not stain your tub! The result: Your skin feels great, you smell great and you are ready for the rest of the day…or a nap, but this is your day so do what makes you happy.

Next I like to move on to a pedicure. It is amazing how much prettier I feel with a new coat of polish on my toes. And I enjoy the shockingly bright colors on my toes for some reason, it lifts my spirits.

You see where I am going with this. No one feels pretty when they are stressed out. You need to take one day where you can put all of your problems into a box and leave it there for just that day. The problems are not going to go away, so put them all off for another day. This is easier said than done and it is going to take some practice. It is not selfish, you are not robbing anyone else of their needs, and I promise you the world will not cease to exist because you took a few hours off for yourself. Yoga, Tai Chi, Meditation, prayer, exercise, sex, focus on things that take your mind elsewhere, even if it is just zoning out in front of the television.

As far as the clothing and shoes, there are some days when we just have to admit it just isn’t going to work. But that should not stop you from feeling good about yourself. Those sexy high heel shoes you have sitting in the box or on the shelf that you no longer have the balance to wear? Put them on while you are laying in your bed. Maybe instead of that tight lacy lingerie you would be more comfortable in a silk robe. If clothing and lingerie are too cumbersome, I recommend having fun with body paints. They come in a vast range of colors or flavors. This is a joy you can share with your partner. Let them paint your body, or write silly messages on yourself for them to read. Have fun with it. There is a lot more intimacy in a relationship than just sex.

If you have the energy, put on your makeup, style your hair, shave your legs… all of those things you used to do when you had the luxury of doing them. The one thing you need to remember is not to over do it. Your day should not leave you exhausted and cranky. Some days you have to feel pretty from the comfort of your bed, other days you can climb mountains. Exercise when you can. This doesn’t mean you have to run a marathon, but even if you are physically disabled there are things you can do for yourself to get moving.

The one piece of advice I can offer to the significant others: Make your partner feel pretty, show them you appreciate them, kiss them like you mean it (even when they are still in their PJ’s at 4 in the afternoon, and they just don’t feel pretty). Do things together that you both enjoy even outside of the bedroom. And accept that sometimes, our bodies just won’t do what we want them to, and it is frustrating. There will be days when there is numbness, or performance issues. As I said earlier, intimacy comes in many forms, not just sex.

Take time to get to know your body. Learn what your likes and dislikes are, learn what is comfortable to you. For a vast majority of MSers, sensory changes are ever occurring; things that used to feel good may now be painful. Numbness changes everything. Your body may be changing everyday, and you need to pay attention to it. Don’t try to force yourself beyond your abilities, but instead rejoice in those abilities. When you learn to relax and let go of those stereotypes and embrace your own abilities, you will discover a whole new level of feeling attractive.

MS and Sex ** new series**

I have been asked to combine my two blogs. You see, I sell sex toys for a living and I have had a number of questions for both MSers and their significant others about sex and the lack thereof. I will admit that some days I feel like the impotent condom salesman because of the MS flares. Because I have MS, this does not mean that my life is over; and neither is my sex life. Though I have had to make some changes and bring in a few aids at times. Which is why I want so desperately to address the issues of the neurological, and psychological effects that MS has on your sex life and offer advice to overcome some of these obstacles.


I started on a mission to write this amazing article, and then I realized it was just entirely too long. So I have decided to address these issues one at a time. I am very excited about this new venture and hope you all can join me on this mission to inform and add suggestions. I would love some feedback on these articles and if you have any suggestions that I may have missed please feel free to comment. Also if you have any questions or issues that I may not have addressed, please feel free to email me privately or you may post a comment (warning, they are public).

I will do my best to answer your questions to the best of my ability. I am by no means an expert, but I do enjoy a good research challenge. And you will see a lot of the sexual issues addressed aren't necessarily MS specific.

Email: alonetimepleasures@gmail.com

Update!

I got a call on 3/22/2010 from the SSDI worker who I have been hounding for the last 2 months who needed additional employment information. I was told they finally have all of the paperwork from all of the doctors and a decision will be made that day and I would have the decision in writing int he next 2 days.

Of course I got no letter. And I waited and I waited.

On 3/24/2010... I check the mail, no news from SSDI. I check the website, no news from SSDI. I call the 800 #, and I am told "according to our files your case is still pending and we have until may 20th to give you a decision". I call the case worker (the same guy who called me on monday to tell me a decision will be made that day).... and it rings and rings and rings and rings, no voicemail, no press 0 to be directed to an operator... just ringing. Ok, maybe he is at lunch (it is 12:45 at this point). Nope. No dice all day.

On 3/25/2010, I was FINALLY able to get through to the operator at the Fairfax SSDI office. I explained to her the phone issues with trying to reach my case manager... Oh, they changed the number and didn't bother to notify anyone. She was able to put me through to his voicemail.

03/26/2010 He calls back. The system (which we all know is flawed, to say the least) is that he collects all medical info and makes his determination if he decides that you are indeed disabled it goes to their doctors for another medical determination.

The doctors on their team apparently were confused about 1 of my cervical MRIs. That is 1 out of the 7 Cervical MRIs that they have on file. But they were confused about the ONE and why the lesions had tried to grow together into one big mass. I was told that a decision had been reached and said decision left the office this afternoon and I would be notified by mail in the next few days (monday, the 29th) By law he is not allowed to tell me yes or no over the phone.

Today is Tues 03/30/2010. STILL NO NEWS!! Yes, it has been 9 months, and 17 days since I filed for disability. And I still do not have an answer from anyone on this matter. I am beyond frustrated and ready to sue each and every one of them if given the opportunity to just for the mental BS they have caused.

Another letter from the Health and Human Services guy?

This is in reply to your email requesting to appeal the denial of a prosthetic device (brace).



I was informed that the Department of Medical Assistance Services’ Appeals Division is attempting to schedule a hearing for Tuesday, April 27, 2010, at 10:00 a.m. You should receive a letter in the near future about your hearing. I assure you that you will have a full and fair opportunity to present your case at the hearing for this appeal.



Thank you for letting us know of your concerns. I hope that this information is helpful.



William “Bill” A. Hazel, Jr., M.D.

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219
************************************************************************************
Did I mention the state of Virginia is run by morons?? They have requested an appeal, which I did not file because the device I needed when I broke my back is absolutely useless to me at this point...unless I re-break my back!

My Response:
Unfortunately I will not have a full and fair opportunity to present my case. I broke 2 vertebrae in my spine on Feb 12, 2010. It is now the end of March and it will be the end of April before the hearing. At this point the brace that would have aided in my recovery is completely pointless. It is like someone breaking their arm and then fighting 3 months later to get a cast. At that point, the arm would have to be re-broken to fit the cast. As I stated in my original letter, we do not yet know the irreparable damage done to my spine that could have been prevented had I been approved for the brace.

I was denied for the brace initially because I am over the age of 21. And the final decision was based on the fact that I was not in "in-patient intensive therapy". Apparently if you are over 21 and living with an incurable disease that has left you disabled and unable to work therefore forcing you to become a Medicaid patient, you are not allowed to break your back or sever a limb as it is not covered unless you are under the age of 21! Thank God I didn’t break my arm and have it sticking through the skin; I would still be waiting for the cast. This is a ridiculous system that is flawed to say the least. Yet, Medicaid approves all pain medications with no questions asked.

As of today’s follow up with my Orthopedic doctor, the bones are still broken but healing, I am still in extreme pain, and the brace is absolutely futile at this point. I am asking you to look into this so that no one else has to go through what I did if ever they find themselves in the same predicament.

I have been fighting for SSDI for the last 9 months, and I have twice been told a decision was made and I should be informed by mail on two separate occasions, yet I still have not received a determination. Had they not kicked my application out the first time that they lost the paperwork I mailed them, I would have had a decision on the appeal that I filed. Instead, the application was not only denied, it was kicked out of the system entirely which made my appeal void, and I was forced to apply a second time. I do thank you for looking into this matter for me, it seems to have at least gotten the case to the medical review doctors. I am hoping to have the decision that was supposedly sent last week any time now.

I do also thank you for looking into the Medicaid issue on my behalf and thank you for getting back to me so quickly. But this is a regulation issue that needs to be addressed with the Medicaid system. I do not see how an item that is prescribed as medically necessary to treat a fracture can be denied based on age.

Hey, I got a response!

This is in reply to your email to Governor McDonnell indicating the difficulties that you are experiencing with your application for disability benefits.



I contacted Ms. Gale Pierce, a specialist with the Disability Determination Services (DDS). The DDS is a part of the Virginia Department of Rehabilitative Services, which is state administered and works with the Social Security Administration (federally funded) in processing applications for disability benefits filed by the citizens of the Commonwealth of Virginia.



Your email expressed your concern of deteriorating health issues, financial stress, and having to resubmit an application because the initial claim was lost in the system. Ms. Pierce contacted the Regional Director and was informed that the DDS office received your claim on January 20, 2010, and it was assigned to an analyst. Case development activities have been completed and the analyst is waiting for some medical evidence. The Regional Director will give your claim appropriate consideration to expedite the process.



I also encourage you to contact 2-1-1 VIRGINIA, an information and referral service that provides information about a variety of programs and services in your area that may be helpful. This service is quick, free and confidential. You may access this service by simply dialing 2-1-1 on your telephone or visiting the website at www.211virginia.org. Though most of these programs have income limits, they are sometimes able to look at a person’s situation with regard to actual expenses and offer at least some limited assistance.



Thank you for writing and sharing with your concerns, I hope that this information is helpful to you.



William A. Hazel, Jr., MD

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219

I wrote a letter to my Congressman, and both Senators today.

Please allow me to introduce myself. I am a US Citizen, a Virginian, a tax payer and a voter. I am also a mother, daughter, sister, aunt, and the future wife of a US Soldier. I am 29 years old, and my world came crashing down around me in October of 2008 when I was diagnosed with Multiple Sclerosis.

“Multiple Sclerosis is an autoimmune disease that effects your brain and spinal cord. The body’s own immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis or lesions), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur”. The really interesting part of this disease is that these lesions do not effect the same exact spots on any given person, which means no two people have all of the same symptoms and no two cases are alike. This being said, there are over 300,000 different forms of this disease in the United States today, with and average of 200 new cases being diagnosed each week.

Please allow me to give you a brief summary on the effect that this disease has had on my body so that you may understand the frustration, and disappointment that I have experienced with the Virginia SSDI and Medicaid offices. When I was diagnosed, the MRI showed 4 lesions on my spinal cord and 7 lesions in my brain. Today, there are over 37. What started out as a numb patch of skin on my right calf turned into my entire leg going numb. This is what caused me to see the doctor, and with the help of 2 specialists, an MRI, blood work, and a lumbar puncture it was concluded that I have MS.

Since that day, I have experienced:
• Numbness all over my body (mostly in my legs and right forearm).
• Optic Neuritis
• Migraines
• Depression and Anxiety
• Insomnia
• Fatigue
• Arthritis in my lumbar spine
• Balance and coordination problems
• Muscle spasms in my back and legs
• L'Hermitte's Sign (electrical surge feeling from neck to limbs when you bend your head)
• Girdle band pressure (referred to as the MS Hug, it’s like being attacked by a Boa Constrictor)
• Crawling skin feeling that increases with warmer temperatures
• Stabbing pain in my neck, between my shoulder blades and a crushing feeling in my lower spine.
• Night Sweats
• Cognitive issues (memory and concentration problems)
• Neurogenic Bladder (requires self cathing)
• Joint pain and stiffness

These are not all of the symptoms that I have had from this disease, to list each and every one would take days. This does not include the side effects of the medications used to treat the disease or the above symptoms. From the medications I have experienced Urinary Tract infections, yeast infections, hives, swelling at the injection sites, nausea, constipation, excessive weight gain, blown veins, withdrawals from certain meds, heartburn, and the list goes on and on.

I am no longer able to work, and can barely function on a daily basis from this disease. I have lost my feeling of independence as I have to rely on my family to help me with simple tasks (cleaning, cooking, getting to and from doctors appointments, and anything else that needs to be done) that most people take for granted. I am fortunate that I am still able to walk, but I can only do so in short distances and am in excruciating pain after standing for more than 20 minutes. I am no longer able to run and play with my daughter, I can’t just jump in the car and go when I need to get somewhere. Staring at a computer screen or trying to read for more than an hour causes the Optic Neuritis to act up. I am trying to learn to adjust to this new life, but each day brings new symptoms and new challenges.

I was laid off in Jan of 2009. By Feb, the numbness and balance problems had gotten so bad that I was no longer driving as I could not feel the pedals under my feet. The numbness is a constant problem, the balance issues come and go. I had 14 MRIs done in the first year of being diagnosed with this disease and I have not had a single one that did not show new lesions.
In June of 2009, I realized that I would not be able to return to full time employment and I applied for Social Security Disability benefits. I was sent an email several months later requesting further information, which I submitted by mail as requested by the SSDI office. I then received a denial letter stating that the requested paperwork was never received. At this point I filed an appeal and resubmitted the same paperwork. Another two months go by without a word from this office. I called to check the status on the claim and I was informed that I would have a decision by Jan 15 of 2010.

Early Jan 2010, I get a call from the SSDI office informing me that they cannot process my appeal because when they denied me the first time, my application was taken out of the system and I now have to reapply and start the whole process over. I asked to come to the office and have a case worker assist me with this application. That appointment was on Jan 15, the day I was supposed to have a decision regarding this appeal. The application was filed again, along with every doctors note and MRI report that I have in my possession. I am told on this day I will not get a decision for another 3 to 4 months. I had been fortunate enough to receive unemployment benefits until Dec of 2009. At this point, and to date, my only income is the $500 a month I receive as child support. I was told by the SSDI case worker to go to Social Services and apply for assistance and Medicaid. I was approved for Medicaid and food stamps and that is it. The rest of my bills are falling further and further behind each day and it seems my credit score is deteriorating as steadily as my health.

On Feb 19 I received another packet of paperwork to fill out for my SSDI claim. This was a Friday. I then received a call Monday morning from the SSDI case worker asking why I had not returned this paperwork. The paperwork has since been filled out and submitted and I am still waiting on a decision. Nine months after applying for disability I still do not have a decision.

To make matters worse, on Feb 11, I slipped on the ice from our massive snowstorm. This resulted in a compression fracture of two of my vertebrae. The Emergency Room doctor referred me to an Orthopedist who I saw the following day. He ordered an MRI to see if the bones were pushing into my spinal cord and to make sure no bone fragments had gone into the cord. He also prescribed a back brace that was supposed to immobilize my back so that it could heal properly. It was prescribed as a medically necessary item. It took me a week to find a prosthetics company that took Medicaid who was willing to fight for me to get this brace. I went in, was fitted for the brace and all of the paperwork was submitted to DMAS (Medicaid) on Feb 19. And we waited, and waited, and waited. I called Medicaid with the billing code for this brace to verify that is would be covered prior to going in on the 19th. I was told that yes, as long as it was medically necessary it would be approved.

On March the 8th almost a month after breaking the two bones in my back, the prosthetics company received a response from Medicaid that stated the brace would not be covered because I was not in in-patient intensive therapy. I received a letter in the mail two days later telling me the brace is not covered and I may appeal the decision in writing within 30 days. I do not know yet the irreparable damage caused to my spine by my bones not being able to properly heal. What I do know is that I also had to fight and be rescheduled 3 times for the MRIs that my neurologist ordered while the hospital waited on Medicaid to approve them, which also meant putting off my monthly infusion until we get those results.
Medicaid will not approve a $500 brace to help the two broken bones in my spine heal properly. If they do not heal correctly, I wonder if they will pay the $20,000 + for corrective surgery, or if that too will be denied. This is the government run healthcare system that is in place in this country and our representatives do not understand why so many Americans are opposed to a government takeover of their health care?

I am begging for your help in resolving these issues with these two agencies. Not only for myself but on behalf of the other 300,000 people in this country who live with this disease every day of their lives. There is no cure for MS. The disease modifying drugs used to help slow the progression are only available in injections or Intravenous infusions. The cheapest of these drugs costs over $2000 a month if you do not have insurance. The IV Tysabri that I am currently taking as a once a month infusion is over $6000. Medicaid did cover my last infusion, but I am uncertain if they will continue to do so. I have run out of places to turn for help and I am drowning in debt while waiting for a decision from SSDI. I am in pain and on a steady supply of pain killers with two broken bones in my spine and Medicaid refuses to cover a back brace. I don’t know who else to turn to at this point. Any input on how to get any of these issues would be greatly appreciated.

These are the effects of our government run systems. I am begging you to vote against this healthcare reform bill. Instead, spend time correcting the systems that are already in place and failing miserably. Your voters are dying while waiting on Medicaid and Medicare to approve prescriptions and necessary testing. The fact that our presidential approval ratings are now in the single digits should tell you that your constituents are unhappy with the decisions being made in your offices. The nation is divided on this health care reform bill, and no other issues are being addressed by our government at this time. One year has been spent on this one piece of legislation while our soldiers are off fighting a war and our unemployment rate is rising.

Thank You,

Self Cathing- worst day ever!

I had to meet with Nurse Lady again. Her new nickname is Mistress Satan. Mistress Satan gives me a pamphlet with instructions on how to insert a catheter. She then opens a drawer on the table of doom and pulls out a little package with a catheter in it, and asks me to follow her out to the bathroom. We wash our hands and she then tells me to go on and pull my pants down and sit on the toilet like I am going to go. Really, Mistress Satan, not paper sheet of modesty this time?

Now I am sitting and she tells me to reach down there and spread em. Mistress Satan is now squatting next to me with her head a few inches away from all of the places she does not need to see. And all of the places I cannot see while sitting. She then directs me, left, right, no, back left, a little to your right, now up, oh too far…. This goes on for a good 10 minutes until I finally find where I am supposed to be with this silly tube. It doesn’t really want to go where it is supposed to go as my body does not like this new form of torture. We finally figure it out, and it is finally over.

This was not a simple process and in all honesty it has taken me weeks of practice to be able to use it without hurting myself in the process. Unfortunately, it is still a necessary evil in my life. And one that brings with it a massive amount of depression. I am 29 years old, I should not know how to do this much less rely on having to use it. It is depressing. A part of me was lost that day when I first met Mistress Satan, and I fear that part will never ever come back!

Some things I have learned: If you don’t get it on the third try, give up! The more you try and fail, the more irritated your body becomes. It then starts presenting you with lovely symptoms that closely resemble a UTI. I have also learned if you go in too far then your bladder will collapse around it mid stream and you will not only be stuck with whatever is left in there, you will also be dealing with severe cramping for hours after. I have learned not to call Mistress Satan at the first signs of a UTI or she will bring you in for more torture. I have learned that I have to psych myself up before attempting to use this device. I have learned that AZO pills work wonders for the irritation, but cause you to pee a super bright neon orange color, and this is somehow normal. I have also learned that when you are 29 years old and you are in a bathroom and you cannot get this stupid thing to go in to save your life, it is perfectly normal to burst into tears.

Urodynamics Testing

That was horrible! Not painful, just wretched! For anyone curious to know what this entails, please allow me to fill you in. Not because I want to tell you about it, but because thanks to MS I have been stripped of all dignity. We discovered that MS really stands for modesty stealer.

So I go in, undress, put on one of those lovely hospital gowns that is 5 sizes too big, open in the back and covers NOTHING. I am then told to sit on this table/ chair combo thing. This thing is insane. It’s like an exam table that is sitting straight up with a U shaped seat on the bottom. Under this little seat is a bucket, and somewhere in the bucket is a sensor to track the speed of urine as it goes in. It’s like a radar gun… for your pee. I am told to pee in the bucket. The nurse leaves the room to give me some privacy, and says to go ahead and go.

I have always had a shy bladder. Prior to having my daughter I could not pee if you were standing on the other side of the bathroom door talking to me with the door shut and locked. I was never one of those girls to go the bathroom as a group because it is impossible to pee while trying to carry on a conversation with other people in the room. P.S. guys, this is why women go together so we can take care of business while talking about you. I am in this big open exam room trying for all I am worth to pee in this bucket while sitting on this table.

Five minutes goes by and the nurse comes back to see how I am doing. I tell her this is not working. My body is telling me I have to go, but there is a little voice inside of my head screaming that this is not a potty!! One of those things that was instilled in me as a child is that you are only supposed to go on a potty. This is why I don’t like camping. She leaves me alone again. For ten minutes this time. And I try, oh how I try. But again, nothing.

Nurse Lady comes back in, this time with a rolling cart and a tray full of tubes. She then proceeds to tell me she is going to drain my bladder (the dreaded catheter), and she will also be inserting another two catheters with electrodes on them that will measure my muscle movement down there. Number one goes straight into my bladder and YAY, I no longer have to go. Number two is put in my woo hoo. Number three, well that is where the number two usually comes out. I am beyond violated at this point.

Now the fun part starts. They pump Saline into the bladder to see how much it takes for me to tell them I need to go, then they add more to see how much it takes before I tell them I am about to pee myself and I simply cannot take anymore fluid. She then adds another ounce just for good measure! I hate this woman at this point.
She then tells me I need to go in the bucket. BUT, I am not to apply any pressure or squeeze my muscles. To just relax and let it out. She leaves the room again to give me some privacy. I don’t really get the need to privacy at this point I mean the woman could not violate me more if she tried. And of course, I cannot go. She leaves me in there for a good ten minutes before coming to check my progress. She reads the print out from the computer that is attached to all of my girly parts.

Now she tells me to apply pressure, use my muscles, do whatever I need to do to go this time. After another twenty minute internal battle with my body and my brain, I am finally able to go, but not all of the way. Nurse lady comes back, reads the print out, says to me “wow, you have great pelvic muscles”. Amazingly I had this same comment just a few days before from the doctor. And amazingly enough, this still does not make me feel any better about any of this! Oh, and BTW for anyone who has never had this testing, they use cold saline, and when you do finally get it flowing, it’s cold coming out! This is the weirdest feeling, as I have never in my life had cold pee coming out of my body.

Nurse Lady decides to once again drain me to see how much I am holding. We are finally done at this point. She removes all of the tubes, and sends me out into the hall to await my results. Results are: your bladder is just not working on it’s own and you have to rely heavily on your pelvic and abdominal muscles to get bladder function. WOW, really?!?!? I could have sworn I told you all of this before you made me get naked, stuck tubes in my sensitive places and made me pee in a bucket! Did we learn anything else from this study? Oh, yes, your bladder is not emptying when you do go…. Did I mention I hate Nurse Lady?

The follow up doc appointment was not so bad, he actually let me keep my clothes on this time. Much better than the first time we met when he had his hand in places it didn’t belong and was asking me to squeeze. Not so bad of course until he decided to tell me there is no medication for an underactive bladder such as mine, and that most likely the issue is caused by the lesions in my spinal cord, from the MS. And my only option at this point is to come back and meet with the evil Nurse Lady again and she will teach me how to do a catheter at home, by myself. No thanks doc!

Oh, but yes, this story gets even better. You see if you don’t do this catheter thing and drain your bladder you will develop bladder and urinary tract infections, and they will eat at your kidneys. And yes at that point you run the risk of kidney failure.

I had to weigh these options carefully, you see I figure I have two kidneys so if one goes I should still be okay for a while right? Of course I ultimately decided to not risk it and to come back and meet with Nurse Lady again, no matter how uncomfortable and disgusting it was.