Archive | August, 2012

Sore Throat, Arthritis And CFS

30 Aug

________________________________________________________________________________

Sore Throat, Arthritis And CFS

I woke up one day last week with my usual sore throat. This isn’t the chronic strep throat I get but more like a regular sore throat. This time the pain is only on the left side of my throat and down deep to about where my throat meets my collar bone. I can feel the pain also going into my left ear. Many years ago when I was healthy I would probably have seen a doctor about this or worried but this happens so frequently and it goes away on its own. I believe it is just a common Lyme symptom.

We had two days of cooler weather this week. The weather has been averaging in the 100’s range and each week it can be anywhere from the mid 90’s up to 108 degrees. For two days the weather was cloudy with some sprinkles and in the 70’s. Just this small weather change and I could feel it coming.

My arthritis was acting up so I knew the cold was coming. One night it was pretty cool around 40-50 degrees and a cold wind blowing in my window. I could barely walk my knees were so stiff. When the cold hits me my body gets stiff as a board and my joints refuse to bend. The snow is beautiful and I always wanted to live in a city that gets light snow but that kind of cold makes my arthritis hurt worse. It is a constant, nagging and severe pain.

I remember growing up and thinking that all kids, teens and young adults felt the same pains I did. I had no idea I was so sick since doctors said I was healthy. I would wake up in my early 20’s and feel as if I had been hit by a car and thought maybe I worked too hard at my job. I thought to myself “man if I am in this much pain now just think how I will feel in my 90’s”. Well now I know I have the body of a 90 year old even though I’m only 37 (I think).

I always thought my pains were common and that maybe my body was slower to heal from a hard days work or partying. I never really took time to think that I never had a day without pain even when I spend a lazy day doing nothing. It took until I was about 30 years old before one doctor (who was just filling in for my regular doctor) said “hey you have arthritis, why does a person your age have arthritis”. My regular doctor came back and said “I don’t think you have arthritis”.

The five years later that same doctor who had diagnosed me with arthritis was now my regular doctor. He then diagnosed me with hypothyroidism, Fibromyalgia and then spinal stenosis. Once again he said to me “why does a person so young have spinal stenosis which is usually found in my patients 60 and older”. I remember hearing this same thing in 1999 when I had elderly pneumonia when a doctor said “why does a 21 year old have elderly pneumonia, this is the pneumonia that usually takes the life of the elderly…very odd”.

It amazes me that not one doctor ever thought to look into the pattern of me having so many rare and elderly type medical issues for nearly all my life. It was always “you just have IBS you will be fine” or “you just have carpal tunnel that is nothing big” but why did nobody say “why do you have a new symptom or medical issues every other month”. I cannot even name the rare medical issues I had as a kid but that had long names and I haven’t heard of them since.

This month has been not so good as usual. My chronic fatigue syndrome (CFS) has just taken away what little energy I have and when I sleep now I feel I can sleep and never wake up. I don’t know if I like my insomnia better or the CFS. Getting 30 minutes of sleep per day is really a nightmare but then so is wanting to sleep all the time and having no energy at all. I would love to have something in between them both where I sleep like a normal person and have energy.

My cognitive issues are getting worse. My dyslexia is more jumbled words than usual. My short and long-term memory is worse. A loss for words happens more often. I cannot remember names of actors and so on. I kind of feel like and elderly person or like I have beginning Alzheimers disease.

*This is a note to myself so I will remember but I had a day this week where I was going to the bathroom standing up (pee) and my body started stinging with pins and needles and I was blacking out. Luckily I was done and ran to my room and passed out on my bed for a few minutes. I had this happened a few months ago where every time I stood up I would black out but it hasn’t happened in a while.

______________________________________________________________________________

Advertisements

My Memory Loss And Current Cognitive Issues

18 Aug

______________________________________________________________________________

My Memory Loss And Current Cognitive Issues

“You know the one thing….you know the guy that does that thing…..you know”. This is a common sentence from my mouth lately. I have had pretty bad long-term  and short-term memory loss the past few years but it seems to be getting worse. I thought I was already pretty bad but now I seem to have the brain of a senior citizen or Alzheimer’s patient which is scary this young.

My dyslexia is getting worse but know my dyslexic words don’t even makes sense. I used to write “candy” (for example) then two years ago the dyslexia started and I would write “cnady” and now it is more like “xadyn”. I do a lot of editing and my iPad, iPhone and spell check work overtime correcting me.   I was once very good at English and writing and now I fight for words to express what I want to say.

My memory issues are getting to the pint where when I think of something I see a blank slate. My speech is slowed now because I can think of what word comes next as fast as I used to. Things that I am sure I know of I cannot remember. I was looking at old pictures and saying “I did that, when?”.

I still have the brain pressure but not as bad as last year. I have the headaches still but less migraines. My reaction times are slow as usual. Not much has changed since I first wrote about cognitive issues (if I even did lol).

My hope is that the cognitive issues will not get worse as I age but maybe better with treatment? So far it doesn’t look like it will get better but I will remain positive. I hope you are having success with your healing and have better days.

Example

As for my memory I had a conversation last week with my dad and here is pretty much what it sounded like:

Me: “The 49ers game is not on the High-Def channel and it starts at 6pm not 5pm”

My Dad: “I know we went over this yesterday don’t you remember?”

Me: “Ummm no this is news to me”

My Dad: “you’re getting Alzheimer’s”  (lol)

______________________________________________________________________________

Hurry Up And Get Here Fall – I Dislike Summer Heat

14 Aug

______________________________________________________________________________

Autumn/ Fall Is Coming

I have never been a big fan of Summer with all the sun and heat. I don’t really know if it is because of my Lyme but I just don’t like to be outdoors when it gets above 80 degrees. I have always liked the fog, rain, snow fall and cloudy gray skies.

So far this Summer has been horrible. We have been hitting around 106-107 temps lately. That is not really record highs for our area but that is still hot. I haven’t been outside at all this Summer but I can still feel the heat in the house. I used to work outdoors in the heat all summer while wearing a fire retardant jumpsuit and hard hat. I don’t miss those days.

I cannot wait until the temps during the day are 60-70 degrees so I can sit out back and not feel sicker. The sun just gives me lethargy and makes me feel more of the flu like symptoms if I sit in it for longer than 5 minutes. It is really uncomfortable and annoying.

I love the Fall/Winter holidays the best. Plus now it is football season which is about the only thing in this world I have left to look forward to. I get my 49er jersey on each week and cheer on my team from my chair. I would love to go to a game but I don’t think I could handle it.

This Summer I have soaked my sheets at least everyday and maybe 3-4 days they were semi-soaked. The Babesia mixed with this heat is not fun. Even my cat will sleep under my bed from 8am until 7pm just to avoid the heat. Se must have a conifection.

Fall is right around the corner and for me and most of my Lymie friends we cannot wait.

______________________________________________________________________________

Lyme Walk 2012 Sacramento, CA – Donations And Info

10 Aug

______________________________________________________________________________

 

2012 Sacramento Lyme Walk

The annual Lyme Walk is approaching and I am doing my part to collect donations for a great cause, Lyme disease. These walks are held in Los Angeles, San Diego and Sacramento.

I will do my best to make it to the walk although the heat is not my best friend. I will most likely not be walking but meeting fellow Lymies, spreading awareness and socializing. If you live in any of these areas click on the Lyme Walk info and see what you can to to get involved.

For those who are able to, they are looking for volunteers to hand out information on Lyme and welcome guests. You can walk to show support or just donate what you can afford. Anything is appreciated.

______________________________________________________________________________

Where And What Time?

11 am – 2 pm. Lymewalk and picnic at McKinley Park, Sacramento, 6th and Alhambra. Co-sponsored by Lyme Support Sacramento and Sierra Foothills Lyme Support Group. Bring a lunch, hear inspirational speakers, socialize.

More Info And How You Can Get Involved:

More Info on the Lyme Walk – HERE

______________________________________________________________________________

If you would like to donate and show your support for Lyme disease please visit my link below:

My Team And Donation Page:

Lyme Walk

or

http://lymewalks.lymedisease.org/lyme/participantpage.asp?uid=3079&fundid=1720

______________________________________________________________________________

Dating With Lyme – This Is What I Put Up With Often

4 Aug

______________________________________________________________________________

 

Dating With Lyme And Rude People

 

I have mentioned before I am trying to date and having no success. I just want to share the type of messages I receive from girls. This just shows people’s true colors and how they are quick to assume and judge others. I have been single for 6 years and figure it is time to find love since I am tired of being alone. I want to marry and have kids one way or the other.

I have talked to others about dating with Lyme and they also get rude, mean-spirited messages. I don’t understand how hard it is to ask “what illness do you have” or “I’m sorry you have to go through that horrible disease but you seem like a great person and worth a try”. But instead people assume you are some contagious, dying person who does not deserve to be loved.

I have been talking to this girl for about a week on a dating site. In my profile it states I am “disabled/retired” and “chronically ill” yet nobody ever takes the time to read my profile they just look at pictures. So after chatting for days I asked she asked “what are your thoughts on me having two kids”, which I replied I have no issues with it and I always wanted to have a large family 3-4 kids.  I wrote “did you notice where I said I am chronically ill, what are your thoughts?”. Below is the response I woke up  and read today.

 

______________________________________________________________________________

 

Her reply

 

“Wow! I did not know that you were chronically ill. I read this last night and it actually made me upset. Not because you are ill but because it made me think that you are incredibly self-centered. You think that the reason women were turned of by your profile is because you are on disability and Medicare? That is not it at all!

I’ll bet that you have never really seen the situation from the other person’s point of view. Well, here it is. You want to fall in love again and want the other person to love you. You want to have a child with that person. Then you eventually will become too ill to take care of yourself making it so that the other person has to assist you with all of your daily activities (hygiene, eating, going to the bathroom, etc.). Then you will make that person endure the agony of passing away. They will then be a single parent because of course, you want a child. You are not going to be around to see that child grow up or even support it in any way. So basically you are looking for someone who will go through the agony of watching you die and raise a child as a single parent? That is really selfish of you.

Being a single parent is not easy. Nor is watching someone get sicker and sicker until they die. I should know. My mother is a Stage 4 Cancer patient and is going to be on chemo for the rest of her life. Every day I see her get weaker and weaker. There are days that she can’t eat or even get out of bed. How could you even consider putting someone through the pain of watching that happen? That too intentionally?

And then to top it off, you want to add a child to that mix? Do you have tons of money set aside to help that person raise the child? Or a hefty insurance policy that they could use to put this child through college? I am assuming not. Raising a child takes time and money. In addition, have you thought about the fact that the other person is looking for someone to spend the rest of THEIR life with? I mean, after you pass away, they are going to be in the same position they are in now only this time with a child!

Seriously, you have got to be incredibly self-centered to think that what you are doing on this site is acceptable. If I were you, I would discontinue my membership. What you want is completely not fair to the other person. Now is it fair to have child with someone knowing you will not be able to assist in raising them.

Don’t email me again. I have no interest in knowing you.”

 

______________________________________________________________________________

 

As you can see she has “terminally ill” and “chronically ill” mixed up and was very quick to judge me and assume. I just really love the fact she had to mention death over and over..sheesh. If I were dying this was an evil message anyway. Please people educate yourself and have an open mind before you jump down someone’s throat!

I can see things from her side but like I said she never asked what I had or gave any sympathy. She just made me feel like a big old POS. I have received numerous messages like this one. In 6 years I have yet to find anyone with compassion or caring.

 

______________________________________________________________________________

CDC’s New Page Makes Lyme Seem Easy To Cure!

4 Aug

CDC SUCKS!!

________________________________________________________________________________

Seriously CDC?

The Centers for Disease Control and Prevention (CDC) is making us Lyme suffers look bad. Now remember this is a well trusted Government agency that many people will listen to their every word. The CDC has a new page called “Lyme Disease Stories” where they share stories of “real” people who “had” Lyme disease. Notice I said “had”.

You can click here to see Lyme Disease Stories but be prepared to say “yeah right”. These stories just really get under my skin because people will flock to this page and see that Lyme disease is nothing to worry about according to the CDC and that a few Doxy pills will cure you in days. I wish there was a comment section where real stories of chronic Lyme can be posted to show the truth behind Lyme and all the suffering and politics.

I cannot believe the government would hand select only the great success stories which who knows if they are even true. These people probably became sick again after the interview so they better do a follow up. Lyme disease does not just go away from a few days of pills. Their stories they share lack the truth, knowledge, and why people should fear ticks just to name a few things.

There are the kind of things that make us chronic sufferers who may be bedridden or disabled look like we are being babies or are faking being ill. Someone you know will read these success stories and then come to you and say “why don’t you take a few days of Doxy, it will cure you”. Then you will bite your tongue and reply nicely if you can.

This page makes it look like you can get Lyme disease cure it and don’t have to worry about being bitten again. They made it sound like a weird fairytale of made up stories. “I was so ill and didn’t know what was wrong until Dr. Knowitall gave me a magic pill that made me all better”. Ugh

Please click the link below to visit Lymedisease.org who brought the story to my attention and shared the news first.

Please read about it HERE  (From Lymedisease.org)

______________________________________________________________________________