Come join us at our next LymieMom’s Meeting! 3/20/16

Once again we will be trying to have another LymieMoms Social Lunch at Panera Bread. January’s meeting got canceled due to the Big Snow Storm so hopefully with Spring right around the corner we won’t have to reschedule this meeting too!

This meeting will be held in the same town and same place as originally planned, Quakertown, PA, at the Panera Bread. Come out for some great conversation, good food, support and make some new friendships too. All Moms with Lyme, Kids who have it, those expecting or trying to get pregnant, or just those Ladies who would like to join us to learn more. Grandmother’s who’s grandkids who have it are welcome as well. We just ask that you leave your children at home so that us Mom’s can focus on each other. I will be scheduling a Day with our kids to meet when the weather gets warmer.

This is the address where it will be held if you dont have a Facebook Page or Twitter Account which is where I usually update about these Monthly Meetings.

Address: Panera Bread, Quakertown PA

Official Panera Bread Website

You can find more updates here on Our Facebook Pages and Twitter

LymieMoms Social Group of PA/NJ/DE (Facebook)

LymieMomsUnite Support Group  (Facebook)

LymeAWAY! Page (Facebook)

LymeAWAY Twitter

 LymieMomsUnite Twitter 

 

Also, I’ve had many other Ladies and Mom’s sad that they can not make these Meetings because they are in another State and County. My hope for this group is to expand it into other States as well, however there is only one of me and I can not be in every state possible. What I’m asking is for anyone who has interest in becoming a “LymieMom Host” in your own town please contact me. There is not a lot of responsibility either if you are not completely 100% sure you can physically do this. Even if you find someone else in your area who would like to do it as well, you can have two people running it and switch off running the monthly meetings. I have no problem with that. So if you have any interest or know anyone who may have them contact me at my email Lymeaway77@gmail.com 

Thank you~Alison

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Save The Date! PA Patient Conference

I’m happy to announce after some time of discussion and planning, the PA Lyme Disease Resource Network will be having their first Annual Lyme Disease Patient Conference this May 14th 2016 in Lancaster, PA.

This is wonderful news for Lyme Patients everywhere! You can find future details on the PA LYME DISEASE NETWORK  Website and also look for more announcements on my Blog, Facebook Pages for LymeAWAY and LymieMoms Unite, as well my Twitter accounts @Lymeaway77 and @LymieMoms

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My YouTube Video, Part 2

This one is about an update on my Grandfather, Insurance companies, doctors and my story, continued…

My First YouTube Video, part 1 update

MY FIRST YOU TUBE VIDEO!!! I was so nervous, but excited to do this. I tell some of my story on this video, I’m not sleeping right this night, etc. You can find any more that I do on the right hand side of my website all the way at the bottom under Videos About Lyme (by Vodpod), Thanks for Watching!!

Overdue update on Grandfather & Me

***I apologize for not returning some of your comments and emails for my loyal friends of my blog. This has been an extremely rough month or so for my family and I..between my Grandfather being quite ill, and myself having nearly a mental breakdown this month; I have not had enough physical energy to get out of my bed.

Lots have things have gotten better with my antibiotic treatment since they upped me to 750mg of Recephon and now 1gram. My knees aren’t as swollen anymore, muscle spasms in legs, arms, and back are much better. Migraines are starting to be less severe and frequent. Sweating and fevers though come and go and my  weakness just seems to be getting worse, I’m  little concerned as well cause chest pain and stabbing pains near my ribs and heart have gotten worse along with my palpitations. I’ve had better days were I was able to get out of my house and the bed for the first time in a several months. Once a wedding, where I didn’t use my cane nor wheelchair!! I even danced a little too:-) The second I went to the mall, in my wheelchair but I didn’t care it was nice to feel like I was in the real world again. I must say I feel for anyone who is a paraplegic due to illness or accidental. Its been physically hard for my parents and husband to push me everywhere and very frustrating for me to get around, especially when doing normal things such as going to the mall and shopping. 

My emotional state has been what I’ve been struggling with. My moods have been all over the place,one minute so happy, next minute  extremely emotional and suicidal. I was even throwing tempers like a 5yr old kid. This is SO NOT ME!! I’m usually very laid back and a happy person. People have told me I’m  one of the strongest people they know. Which now makes me feel so much worse, just really struggling with all these feelings. After speaking with my family, I do feel much of this has to do with a combination of things…my Grandfather being ill for one. Not many people know, but he lived with my family and I for 12yrs along with my grandmother who is now deceased. This makes it so much harder, although I wouldn’t take back any of the memories I’ve gained from that experience. Not having a home with my Husband for 2yrs now, basically not feeling married nor a wife. Being in bed all the time due to pain and too much weakness just to do the simplest of things.

I really got scared though and asked for an emergency visit with my doctor, realizing this is not ‘ME’, I don’t ever react this way, its not in my personality to act like this. Some other factors after speaking with my doctor was one of my medication’s called cymbalta which I’ve been on for 5yrs now since I first got diagnosed. I had been placed on this medication for my fibromyalgia, depression, and heart palpitations. It has helped immensely with all of that, but suddenly over the past month I’ve experienced some scary feelings and behaviours. I was told over a 2 weeks ago that this might possibly be a reaction from the Cymbalta or I was having new Lyme symptoms occurring do to treatment which is very common and normal with IV treatment. She said my behaviour’s I was exhibiting were manic-depressant and some phobia’s.

I can’t tell you what a horrible experience these feelings have been for me and my family. Especially my husband, god bless him, but I think he wonders sometime what has happened to the woman I marry. I wonder that myself. I’m not sure lately who I am, trying to find that person. My Doctor did help me out though, it hasn’t been a quick fix but its helped enough that I wanted to actually go outside the other day and be around people. She lowered my dose of Cymbalta and added Abilify and it seemed to have regulated some things. I had a bad day today and yesterday, but were still working out the kinks. I haven’t spoken to any of my friends other than my friends from my lyme doc’s office. Not cause I don’t think they’d understand, but I think they’d think I’m a nut job..I’ve lost sooo many friends due to this illness, its very hard. I hate to say it  but my friend who have Lyme can relate because they have the same symptoms everyday. Even my husband and mom have said they’ll never understand what its like for me day to day living with chronic pain and not having choices in my life. 

I’ll be seeing my Doctor now again next Tuesday, hoping we can figure out what all this is. If there is anything more she can do for me. I’m already setting up with a Lyme literate psychiatrist which I think we’ll really help. I’m always open to that. I don’t want to hurt my family nor friends and lately my behaviour has. THAT I don’t like!

~~UPDATE ON MY GRANDFATHER~~My pop pop due to not having any use of his legs due to the tumor growing back,surgery(which we were told might happen) and muscle weakness from being in bed, he has been transported to a nursing home in the intensive care section of the home. They are taking very good care of him there, we’ve been extremely impressed. He sleeps 80-90% of the day from the Tumor. My family has chosen no more treatment. Hospice has come in now to keep him comfortable. It really bothers me that I’m too ill myself not to be able to see him as much as I’d like. He is a good man. His gf has still been by his side and he’s had lots of visitors. At times he will forget who we are, which is really tough. Plus, he’s aware he sick at times, lucid which can be frustrating since he wants to come home to his apartment. We just have to keep going, as hard as some days are. Our family is still in shock, being that this all has happened since August. Were not completely positive how much longer he has left. He has talked a lot lately of my grandmother and asking for his mother. Its so very sad at times. Other times he’s laughing and enjoying his piece of pie from his favorite diner in town that we brought for him. The hardest part is he can’t walk on his own and he’s confined to his bed most of the time. He has lately gotten over being angry that hes there and has accepted whats happening and has joined others in the dining room.  He is such a loving and caring man and is so loved by others. He absolutely adores my husband, he calls him his ‘BUDDY’. Its so cute…the one day it really did hit me. He grabbed my face I said some words, he again asked how ‘I’ was feeling..crazy, lol. Then I laid my head down on his chest and felt the tears streaming down my face. He kept rubbing my head and stroking his fingers in my hair. It was so hard.. I fed him his dinner that night and most of the time he was so tired and weak he couldn’t keep his eyes open nor keep his neck up, he kept wanting to put it back and sleep. Such a sin..can hardly believe this has happened. He’s been a really good eater though. He had one bad day last week that gave us a scare thinking..oh no its time. The worst out of the worst though is the nurses had to close the curtain at one point and use this machine that looked like the shape of a bulldozer to lift him out of bed. It had a swing that picked his body up. He moaned though..which was so upsetting. It litterly squished him like a sardine..just broke my heart, could hardly keep the tears back. Ya know, know matter what age, death and illness is a Bitch.

7/4/08-Good Morning America on Lyme

Alright..this Video was OK, I felt CNN was much better. Some of this newscast I can somewhat agree with.  My question is why did they not have a Infectious Disease Doctor, or one who ‘Specializes’ in the studies on Lyme to interview?? What really bothers me is, I feel like their putting it out to the public that this is ‘Curable’. A couple days or a week of antibiotics and your good to go. Thats how most people end up spending the next 10yrs of their life getting more severe symptoms,spending billions of dollars on doctors telling them they have something else. Most of us Lyme patients will tell you, we feel its about luck. You come to my Doctors office, we all have the same story. Even people who’s blood work was positive or they did have a rash or see a tick, their still told they don’t have Lyme. Finding the RIGHT Doctor, how fast enough you are treated, the duration of treatment, combination of antibiotics, and how good your immune system is at the time of the infection has MUCH to do with the outcome. Not to mention testing isn’t always reliable, they tend to make that clear.

My feeling is, if I want to take the risks I should be allowed to do the IV Antibiotic Treatment without persecution. Our Lyme Doctors shouldn’t have to worry about losing their license’s to save lives! Its not like we don’t know the risks, I mean there are risks with any treatment. I’ve known people with Cancer who have had problems after chemo and radiation, loss of hearing, burns, etc. My biggest concern is what they are telling people to look for in ways of symptoms..the percentage’s of getting a rash in studies recently are only 40% of people knowing or seeing a rash or tick bite. Not all rashes look alike either! They did not go into talking about the Co-Infections either, which is the key to treating Lyme Disease. They talk about Science..aren’t people like me and others proof enough that long-term antibiotics work?? When it all comes down to it, its about Money & Politics..so what else is new in this country..