Archive | June, 2012

Get Well Soon Jewels

16 Jun

Love You Jewels

I just wanted to take time to make a post for my best friend and Lyme sis Juliana. Once again life is kicking her over and over while she is down. She has chronic Lyme, coinfections and a lot of other major medical issues. She has a genetic immune disorder and her immune is even worse then us Lymies immune systems are.

Jewels  has had a temperature of 105.4 for nearly a week and is not getting any better. She has developed red welts all over her body from hand, foot and mouth disease she contracted from her son this past week. She is also herxing from the die off of her Lyme. She has a permanent chest port that gave her a collapsed lung and a clot near her heart weeks ago. Just too much.

Today she was having heart issues and she is very scared according to her husband. I am worried about her. We talk to one another every day and try to make each other laugh in these tough times. I feel so helpless and scared for her and it breaks my heart to see her like this.

Jewels is married to a wonderful guy and she has a son who is her pride and joy. Her husband is scared and her son is worried about his mommy. So please life or whoever can hear me, let Jewels get through this and give her a break. She just keeps getting one thing after another.

She can use hope, prayers, love, caring thoughts or whatever you can send her way tonight. I love you Jewels and I hope to hear from you real soon. I hope you slept well tonight and the bugs have left. I am always thinking about you and sending all of my best.

______________________________________________________________________________

Lyme And Love

15 Jun

 

Update – Still Single

 

Last year I did a story on finding a relationship with Lyme disease or disabilities. I spoke about different web sites for single people to find love. At this time last year I was on a few dating sites and having no success. Well I am here to report I have had no luck since then and have not had one date or potential date. Yay for me!

There were two web sites specifically for Lyme disease singles which had only a few members and most of them never replied to messages. I joined a dating with disabilities web site and even had no luck on that one but I did get a ton of spam from that site.

I am on eHarmony, Match, Plenty of Fish, Lyme dating sites…etc. Maybe once a month I will get a message from a girl who seems interested. They send me some small talk and then I never hear from them again. Almost like they are just bored and wanted to chat that night and then they are done.

I have had many girls questions my retired/disabled status on my profile. I have tried changing my profile around to make me sound healthy but that still does not help. I will change my profiles around experimenting with what might work. I will mention my Lyme disease, not mention any disability, mention I am ill, that I am self employed but nothing works.

What really hurts is when I will get a girl who is my type and we have so much in common and we get to the point where the next step is to meet…..then the girl will ask “what is Lyme disease”. I will explain to her what it is and then they delete me or never write back.

They don’t even bother to ask more or say they are sorry. Not that I want sympathy but it just seems rude to disappear when they seemed so interested. I feel like a leper at times. I have been rejected for saying I am disabled, have Lyme, don’t work and I am not sure what to say anymore.

I feel being honest is always the best way to do things. I don’t want to get a girl really interested and go out on dates and then she starts to notice my twitches, the way I walk, sweating, puking….and she wonders what is going on. Then I might have feelings for her by that time and then she dumps me.

I have no idea if it is my Lyme, my looks or my age anymore. I have been single going on 6 years! I hate being single and I always dreamed of being married by my 20’s with kids. I am a little late to that party I guess. I am losing hope and I know I need to be patient but that usually means a year or two but not 6 years.

I miss the feeling of being in love, flirting and chatting on the phone until late night. The feeling of butterflies in your stomach or some kind of excitement knowing she might be the one. Now the only person I talk to late at night is my cat, how pathetic is that.

What sucks is being in my house everyday for the past few years and no human interaction. I know if I was healthy and single I could go out and find somebody but being sick and unable to go out is killing me. I don’t even think I would know how to kiss a girl or do anything else anymore.

If anyone I talk to seems to know a single person they will say “oh but she probably wouldn’t want to date a guy who can’t work and is sick”. I completely understand but there has to be someone out there willing to give me a chance. I do have a type though so I am not just going to settle for the first person I meet just because I am disabled.

My only ray of hope is I do have a crush on a friend of my best friend who is a Lymie. The only problem is she lives in another state. I have been trying to talk to her for a while and I hear she is interested and talk about me but she is very busy and lost. I hardly hear from her, maybe one sentence every few months.

This girl had a shock last year when she found out her husband was gay so she’s kind of been trying to find herself. So I don’t want to be too pushy and when she feels ready to talk I will be here for her. She is very pretty and we have a lot in common so I hope she will give me a chance.

Until then I will just sit here in my chair and keep being optimistic. I have seen many Lymies find love so I know my day will come. By this time next year I hope to report I am getting married. Keeping my fingers crossed.

 

 

______________________________________________________________________________

 

 

 

You Just Don’t Get It

14 Jun

Got Meds?

You Just Don’t Get It

Lyme really changes our lives and we cannot help that we are no longer the same fun person we once were. I feel as if I am in a real life invasion of the body snatchers. I look in the mirror sometimes and I wonder who it is I am looking at. It is not depression as many people think but it is the feeling of being really ill and there seems to be nothing that can cure me. I don’t like feeling this way but that is my life right now.

I hear from so many people how their friends and family just don’t get why they can’t meet for coffee or go out for fun. Lyme and coinfections are really unpredictable little critters and we never know what day we will be feeling our worst. It makes it really hard to try and plan something with a friend when you have no idea if on that day you might be in the bathroom all day, puking all day, too ill to get out of bed…etc. Some of us are bedridden and never leave our rooms.

We are prisoners in our homes. There are some people with Lyme who are able to work, go to the gym, go out and have fun…. but that doesn’t mean all of us are that way. Each person, body and what diseases we have are all different. Just because Bob has Lyme that he has only had for one year and he can still work that doesn’t mean that I can work. I have had Lyme, Bartonella, Babesia and much more for 30 years and at one time I was able to work too but now look at me.

It is very difficult to explain to our friends and family why we cannot go to a movie on Saturday. We are sensitive to sound, light, smells and just being around a large crowd. It might sound made up or crazy but it is true. Going to that movie will make us feel even sicker and it might take 3 days of bed rest to recoup from that small venture out of the house. Knowing that one small task will make us feel so much worse for days is not worth the risk of going out for an hour or two.

I once took a trip with my parents to a nearby city for a 3 day vacation. I got very car sick and jet lagged on the ride. I remember seeing the beautiful view from our house we rented. Then I slept all three days and barely woke up just for dinner and back to bed. I didn’t even get to enjoy anything. There was a hot tub I wanted to use but I never got to use it. After that trip I really do not feel like going anywhere if it means I will feel so ill I have to sleep for days.

People like to compare their self to what we feel like. Let me just say it is not the same. I hate when I tell someone how I feel and they seem to think they know exactly what I feel like or that their situation is worse. I tell them I was up at night crying with so much pain that it was a 10-11 on the pain scale. Then that person will say “I know what that feels like I had pain today after I tried to lift a chair but it was much worse than yours”. No that is not the same pain.

I used to be pretty tolerant to pain when I was younger. I have broken plenty of bones and I even fell off of a bridge at work one time and got back up and started working again. I have cut my head open, got a concussion and continued to work with blood dripping all over. I have drilled screws through my fingers during a rush job at work. I am not clumsy it was just a very  faced paced job and very physical.

I have had my lower back give out on me and I was in a lot of pain and had to drag my self on the ground since I could not stand up. There are so many times I have had some form of pain but nothing compares to the pain that Lyme, Fibromyalgia and coinfections bring to your whole body. The pain is intense and on every part of your body where you have never had pain before. If I were to describe the pain and symptoms I would be here for weeks.

For some reason people like telling us how they “feel like crap” when they have a cold or flu as if they think they are on our level and going through what we are going through. Again not even close. They are looking for sympathy yet in years not one of them has ever shown sympathy for your Lyme. A cold and the flu are absolutely nothing compared to Lyme. Those are just one of 100’s of symptoms.

Lyme Is Overwhelming

Lyme and coinfections can be so overwhelming, confusing, and make you feel lost. It is so hard to tell someone in words just how you feel. There is so much going on in our bodies, our brains, and in our lives it makes you feel as if things cannot get any worse everyday.

We struggle with many things daily that people do not see. We battle with insurance, we try to get medicine covered so we don’t have to pay huge medical bills. Many of us have no income or spouses and we cannot afford to see a doctor. Many do not have medical insurance, do not have a place to live, have no money for medicine….etc.

Most people only know what they read on the internet from a web site that has no clue what Lyme is either. Some may have heard of the word Lyme disease at one time in their life and all of the sudden they are an expert on how we should feel and how to cure us. You hear things such as “oh you have lymes disease, well that’s good at least you know after a few pills of antibiotics you will be cured in a week or two”. Seriously? I want to slap those people.

Even when you tell someone that you have been on antibiotics for years they still seem to think you should have been cured in two weeks because the article they read says so. Well the person that wrote that article has never had Lyme disease and they are uneducated. They most likely are our enemy and tied to the IDSA.

Going Through The Motions

If I tried to explain what my Lyme and coinfections feel like I guess I could say it is a horrible, painful nightmare that just won’t end. For some the pain and depression become so mush that they take their own lives. Montell Williams has MS and he can relate to what we go through. He even tried to kill his self to end the pain and the nightmare. By the way I am not a quitter at anything and I think suicide is very selfish but yes the pain makes life not worth living at times.

This is how my days go and many others can probably relate and are even worse off then me:

I wake up at some odd hour in the afternoon and the first thing I wake up to is pain, dizziness, headache, cotton mouth, soaked bed from sweat, and I try to get out of bed. There is no sense of urgency or excitement since I know exactly how each day will be. I grab a water and try to rehydrate after sweating all night.

Next I take any pills I need to take on an empty stomach such as my thyroid pill and herbal tinctures. I walk very slow and tipping from side to side with a limp to my chair in the living room. I am still on a daze and I tend to stare in a trance a lot at nothing. I turn on the TV and find it really hard to focus on what they are saying.

About this time I start to get new pains (my usual pains) come over my body and I feel the need to rest my head. My dad will talk to me but most of the time I find it hard to follow what he is saying and it is hard to keep up. I then will eat dinner. I have no cravings anymore for food and I just eat because I know I have to.

After dinner I take my lump sum of pills that are to be taken with food and water. These include my much needed pain pills which seem to make me feel just a tad bit better and I am so thankful they still help me. I will watch TV for the next few hours and chat with my parents but I don’t really talk much.

Once the pain killers kick in and my pills give me a tiny boost of energy I will play games on facebook or answer friends messages. I also take this small window to update blog posts. Usually while sitting at the computer my neck is stiff, arms hurt and hands hurt from typing and I feel I just want to lay down. To a healthy person being on the computer is fun and easy but to a sick person it is a struggle.

After my hour of “fun” I will go to my room and lay back in bed. I will watch my recorded shows and maybe play a game or two on my iPhone. Hours later I hobble into the shower and then lay back in bed. I take my night time pills. I will watch TV until the sun comes up and usually fall asleep around 6am-10am on average.

During my rest I can either have CFS or Insomnia. I never know when each one will strike. Most nights it is insomnia and I get maybe 30 minutes to an hour of sleep. On a good night my CFS will make me so tired I feel paralyzed and I sleep for 6-8 hours never hearing anything. This is not usual for me since I was always light sleeper when I was healthier and I could hear a cricket fart at 100 yards away.But when the CFS is bad my eyes are always heavy and I find it hard to stay awake even if the house was burning down.

The next day I repeat the same process. Pretty exciting stuff huh? I am just going through the motions and waiting for something to progress. I know one day I will have somewhat of my life back but until then I am patiently waiting.

______________________________________________________________________________

Bartonella – Stretch Marks And Bumps

13 Jun

Bartonella

I have had these large red stretch marks on my body since I was a teen. I knew they were not from growing or from losing/gaining weight. They were always a mystery to me why one day they just appeared. Over time these stretch marks got bigger, redder and popped up in new places. My self esteem was very low in those days since my stomach looked like it had red tiger stripes.

I now know these stretch marks are caused by Bartonella. If you Google “Bartonella stretch marks” you will find some pictures. My stretch marks first appeared on my stomach. They run vertically from the waistline to just above my belly button. They are about 6″ long, 1/2′ wide and they are equally spaced. all together about 10 of them. They are bright red and jagged not straight lines.

The next set of stretch marks started to show up under my arm pits and the back of my arms. I have very thin, elastic type of skin so any place where the skin seem the thinnest there are marks. I have them on my inner thighs just under my groin. They also run down my back/spine and on my “love handles” which seems to be the most common place for the Bartonella marks to show up.

I also have had hundreds of little bumps on my forehead. They are almost like tiny zits that scab over and I scrub them off in the shower daily. Sometimes my forehead will be almost clear with no bumps and other times there are bumps all over and some are larger like zits. I also get these bumps down my back and they feel like sand granules all over my back. I can scrub them off with my sponge in the shower.

I am told these bumps are also Bartonella. They show up in the form of zits (with no white head). The common place for these bumps to show up are on the back and down the spine. You can get them all over the body.

My Lyme is in cyst form and biofilm and I have been noticing very hard little white zit type things on my face a lot lately. They are not zits and they will not pop. They are hard white perfectly round balls the size of a tiny zit but they do not have a reddish area surrounding them. I will see a white ball on my cheek or under my eye. They never go away.

I have taken a few out by using a needle and almost cutting them out. It takes a lot of work to get them out and some bleeding. I have to dig at them and finally the tiny hard white ball will come out. I wonder if this is a Lyme cyst?

So many wonderful little surprises with Lyme disease and coinfections.

______________________________________________________________________________

Kefir – Probiotic And Immune Support Drink

11 Jun

Probiotic Drink With Health Benefits

I am a Kombucha drinker and have grown to like the taste but there are also other great probiotic and healthy drinks out there in the markets. Today while shopping for my Kombucha my mom brought me home a Kefir type of drink.

I am not a Kefir fan since I do not care for coconut water, milk, stevia or any other fake sugar substitutes. If you like coconut and stevia then you might like this drink. It has some great health benefits and it is not packed full of the bad stuff like other drinks. The best part is you are quenching your thirst while adding support to your digestive and immune systems.

This drink is not an original kefir which is made with fermented milk. This is a coconut water kefir with added fruit flavors. I had the strawberry, acai, coconut flavor. It has the taste of the coconut water, light fruit flavor with carbonation. I think of Kombucha and Kefir as soda for Lymies.

The drink along with Kombucha can be found at Nugget Markets and Whole Foods. The brand I discussed is made by KeVita.

Here are the health benefits according to the bottle:

“Strawberry Acai Coconut tastes like drinking a kiss! This sparkling delicious refreshment is a combination of coconut water, strawberries, acai fruit and certified organic KeVita™ culture.  Lightly sweetened with organic stevia, Strawberry Acai Coconut enhances digestive flora with live probiotic cultures.  All of the Coconut KeVita flavors are vegan and made with organic ingredients. Dairy, gluten, caffeine and soy free. Shake gently, drink with healthy pleasure and keep refrigerated”.

“KeVita’s probiotic culture may promote digestive health, maintain the immune system, and deliver more active cultures than yogurt”.

Low calorie, Gluten free, Lactose free, Dairy free, Vegan

Probiotic cultures: Bacillus coagulans, L.paracasei, L.plantarum, L.rhamnosus

______________________________________________________________

(back of the bottle)

_______________________________________________________________

Stiff Neck Problems

10 Jun

Stiff Neck

Today I woke up with a really bad stiff neck that runs from about half way up my neck, under my shoulder blades, across my chest and all the way down my spine. Not your typical stiff neck but it is one I am used to. I have been dealing with stiff neck issues since I was a child.

The pain has radiated where my Fibromyaglia is always the worst for me and that is in my shoulders and under my shoulder blades. Even though I always have this pain anywhere from a 6-12 on the pain scale all over my body I can feel the stiff neck pain since it is more intense with moving my neck.

I have herniated discs in C-Spine 5-7 so maybe a nerve is being pinched but usually that runs down both arms all the time. This pain is on my left side only. It runs down the left side of my neck, down the left side of my spine down to about the lower back. I have a few different patches on right now, I took 2 flexeril and 2 Norco but that does not seem to be helping take the edge off.

As a child I used to get stiff necks often and they could hit me even while walking. Sometimes it is caused by the way I sleep yet other times it just comes whenever it feels like it.

I remember one time as a kid I had a really bad stiff neck so I took a hot shower to see if it would help. I remember waking up on the floor of the shower and my parents carried me into my bed. I don’t know why it made me pass out.

My lymphs in my lower neck used to fill up and be as big as and as hard as small rubber bouncing balls. If I turned my neck I would get a shock and hear a popping sound. After that my neck would be stiff for a few days. I am not sure if this was Lyme disease related or not but ti sure sounds like it.

These current stiff necks are really annoying and painful. When I turn my head slightly it makes me eyes shut and I make a weird looking face. The stiff neck causes a headache if I turn my head too long.

______________________________________________________________

Dropping Things, Tremors And Movement Disorders

10 Jun

Movement Disorders In My Hands

I have had really bad tremors in my arms and hands as long as I can remember. I can feel the jerking, twitching movement deep into my arms and tissue as if an earthquake is going off in my body. I was once thought to have Parkinson’s disease as I’m sure many of you have been misdiagnosed with.

My doctor when I was 13 said I would live my life looking like Katharine Hepburn with severe shaking. Every time I saw Hepburn in a movie growing up and saw her shaking I was scared to know that would be me one day.

I worked in retail at age 18 and when I would ring up a customer and hand the change back I would drop or what looked like throwing their change back. I cannot count how many times someone asked why I was so nervous. I had to explain to them that it was not nerves. When I do get nervous the tremors are severe.

Over the years I was prescribed pills which should have helped wit the tremors such as Beta Blockers. One doctor thought he struck gold when he prescribe me Beta Blockers. He was so excited and thought he had cured me tremors since he thought my heart and pulse caused the tremors. Turns out they did not help.

My old Neurologist thought I had some movement disorders. I now know that the Lyme, Fibro and coinfections can cause tremors. Now I know I am not alone and that there are so many others just like me in the Lyme community. Shaking and tremors are common symptoms.

For the past 4 years a new problem has come about. Not only do I have the tremors but now I throw or drop things a lot. I will be brushing my teeth and holding the tooth brush and my hand will jerk and there goes the tooth brush flying across the bathroom. I drop my razor while shaving and shampoo bottles go flying in the shower.

When I will nearly knock over something or drop it and go to catch it my tremors/jerks are worse and I end up making a bigger mess. It is like the old instinct to catch say my water bottle from falling over and spilling it kicks in but then my hands do not react the way I want them to.

If I sit certain ways in my chair my fingers will go crazy and shake violently. If I try to touch my pinky finger to my thumb the picky finger will shake rapidly.Holding my arms and fingers out straight, my fingers shake side to side very rapidly. I usually just hold my hands into fists all the time.

I call my hands my idle hands after the movie. In the movie this guys hands have a mind of their own and he cannot control them.

Depth Perception

I have noticed my depth perception is off also. I will reach across a table for an item and end up hitting or knocking over 1-3 other items I thought my arm cleared. I will reach for things and stub my fingers into walls or hard objects. I stubbed two toes last year on different days and broke both of them. I swear my feet were a good 6-8″ away from the objects my toes smashed into.

One of the many reasons I have stopped driving a car is due to my depth perception. I stopped driving from going in to a trance, dizziness, slow reaction time, feeling of movement when the car is parked and the list goes on. I feel depth perception is very important while driving and I am afraid I may hit another car or run into something.

I have bumped my bad knees into tables or chairs I thought were further away. I feel as if I was in a glass shop with delicate china plates an cup I may break a bunch of things. I used to be very precise and never run into things or knock anything over but in the past few years it is increasingly getting worse.

______________________________________________________________

Follow

Get every new post delivered to your Inbox.

Join 1,396 other followers