Lyme Awareness Month in PA

Please check out events below in the PA area

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Lyme Disease Events in PA

May 16th: North Wales Day from 10-2pm, St. Peter’s Evangelical Lutheran Church
211 Main St., North Wales, PA 19454 We will be handing out information on Lyme Disease and answering any questions you might have.

May 17th, 3:30pm — Under Our Skin and Q&A at The Ambler Theater, 108 East Butler Avenue, Ambler, PA http://www.amblertheater.org Q&A with Guest Speakers: Dr. Ann Corson, MD, Douglas Fearn, President LDA-SEPA, and possible guest politician. Dr. Corson is one of the few family physicians treating children with Lyme; she will be able to share her experiences with treating the children affected by Lyme. Many Lyme kids are mis-diagnosed with ADD/ADHD, Autistic Spectrum, Rheumotoid Arthritis, Parkinson’s, Chronic Fatigue and numerous other ailments, and treated symptomatically without addressing the underlying causes, and left to deteriorate. If you, or anyone you know, has a child affected by learning disabilities, dyslexia, ADD, autistic spectrum or other neuropsychiatric/cognitive issues, come to this special forum to learn about the “many faces of Lyme disease”. This will be the LAST FREE Community screening of Under Our Skin in the Greater Philadelphia Area. This film has been picked up for commercial release, and the Philadelphia marketplace is a target market; therefore all free screenings have been put on hold until future notice. All details are below.

This screening is co-hosted by MontCoLyme and the Ford Family. The Ford family has an 8-year old son who has been severely affected by Lyme disease. He is now under the care of Dr. Ray Jones who is featured in this film. Under Dr. Jones’ care and treatment for Lyme disease, their son has steadily improved. We are especially pleased to have with us for the Q&A, Dr. Ann Corson, MD, one of very few Lyme-literate Board-Certified Family Practice physicians treating children. Additional panelists include: Douglas Fearn, President of the Lyme Disease Association of Southeastern PA, and tentatively PA Representative Josh Shapiro. There will be lots of informational materials and resources available at the screening as well. For more information on the film, see http://www.underourskin.com, and regarding Lyme disease, see http://www.ilads.org, http://www.lymepa.org, or http://www.lymedisease.org. See you there!

My April Update on Treatment

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April 4th,’Under Our Skin’ Screening in PA!!

I’m so excited!! Come April 4th I will be speaking at a Under Our Skin Screening about my story with Lyme. This will be held in Lansdale, PA at ‘Trinity Evangelical Lutheran Church’ at 10:30am-1:30pm. Address to get there is: 1000 West Main Street, Lansdale Pa, 19446.

For the trailer of the movie go to www.underourskin.com

A dramatic tale of microbes, medicine & money, this eye-opening film investigates the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their head.” Following the stories of patients and physicians as they battle for their lives and livelihoods, the film brings into focus a haunting picture of our health care system and its inability to cope with a silent terror under our skin.

Worst yet to come?

So, I’ve been doing this treatment since what..umm March 08 now…yeah this weekend and since last Wednesday have been the worst 5 days my body has endured yet. I could not move out of my bed without the help of my husband. This curse of herxing did not give me a little break til Sunday night, that is a couple hrs only, then came back severe again. My docotor had decided to decrease, take me off, and add new medicine’s to my regiman. Pulsing is what its called, along with my IV Recephon daily. This change due to bacterial infections that have been popping up now due to my body fighting the lyme.

Thats when I litterly felt by body dying wednesday night. Heart racing, head pounding, legs and all joints unable to move feeling like they were being weighed down by heavy ball and chains. Let alone getting a break from the inflamed feeling throught out them as well. It litterly felt like someone lit a match to my legs. I awoke every morning for the past three days with tremors, hot flashes, and severe neck pain and weakness. My poor husband had to drag me to the bathroom because I could not walk or even crawl to get to it myself. Then Sunday morning he awoke to hearing me cry because I had fallen out of my bed trying to get up. And they say there is no such thing as chronic lyme..then explain to me people why I’ve endured these symptoms since age 11 and they’ve only gotten worse by the year.

As I sit here writing this I wonder how so many of you lymies out there do it without the help of family or a spouse. I’m very independent when I’m sick as much as I can be, but this weekend I had to have someone there to make sure I could do the simplist of things. I couldln’t even shout out my husbands name when I fell cause I was so weak…how do you all do it? I thank god I have my family support every day. Then there are other times I wish they weren’t around to see this, its only more worry on their part. I commend all of these couragous sick or dying people that are ill who get through every day without a loved one’s support. I feel helpless and a alone, yet I’m not alone and feel guilty for even feeling this way let alone crying or whining about all this.

Will this nightmare called Lyme ever end?? Will I have children some day?? Will I live my dream of being married happily and having a family come true…I’m starting to have my doubts.

Sicker before better, I know thats how it is with this treatment. But how do you get through the sick part without wanting to give up? Is this sick part really ok, is it normal to feel like this? Am I getting to the end of this treatment or is this just bringing out more horrible things that have been sitting in my body from this virus for over 20yrs? Who knows…only the lord above does.

My Update as of 11/25/08

Avril Lavigne : Keep Holding On

I saw my lyme doctor on Tuesday…advice for some lyme patients, don’t take a narcotic before entering doctors office! I was so loopy that it was hard to even give a update…LOL. It was so funny.. My mom took over for me on things I had had written down for my doctor, thank god!

She’s very happy with my blood work, liver looks great, Lymeblood work is getting better. She was quite impressed how well I’m doing on my stomach considering how high she’s put me up to (1,250mg of Recephon + Oral meds). I told her its the vitamins!! She’s been handing out my cards to many patients of hers, its been very rewarding to see how many people I am helping out.

If your interested shoot me an email and I’ll let you know what I’m on. They help with so many side effects of Lyme and IV treatment. My website if interested to take a look at is www.marketamercia.com/alismall

Her biggest concern after seeing her on Tuesday was how my new drugs for my emotional stability has been and my weight loss. I told her how well I’m doing but that my heart palps and migraines have gotten a bit more intense when I’ve had them from going off of the Cymbalta. That stuff is wicked!! I was on it for five years for everything from my fibromyalgia, too my heart palpitations that I get badly, and to help my migraines and depression. It really helped for the past 4 years but def time to switch. She’s putting me on Paxil..with all the years of being ill I can’t honestly remember if Paxil was one I was put on. We’ll see how I do. Emotionally considering the stress and circumstances in my house lately I’m dong soooo much better since coming off of the Cymbalta. She’s still thinks its 50/50 between my Lyme symptoms (which can cause many psychological symptoms) and the medication. I’ve already spoke to several people and have heard horror stories. I honestly think its a combination of things…21 yrs of illness, my grandfather being sick with cancer, me being sick of not starting my life and marriage, plus the Lyme and meds. Anyone who is human would have a meltdown.

So I have already started the high dose, definitely feeling the herx! which is why I’m up at 6:30am, sitting here with my pain pop. I shouldn’t say it but I Iove these things I get at least a couple hrs of numbness, not that I’m promoting drugs! But, when you need them you need them…lol. Her plan now for me is to get a Cat Scan & MRI of my chest, abdomen, and brain. She’s concerned since all the weight I’ve lost and how weak I’ve become along with my lymph nodes being huge. She’s looking for Lymphoma or anything out of the ordinary. I’m not to worried, its standard procedure with most patients in my condition. Honestly my biggest concern right now is gaining weight, I’m 108 pounds and I’m 5’6..yeah not your average weight for my height. Which a lot of this could be do to the Lyme/Babesia I have. A symptom of many patients, my eczema has gotten out of control again too. On my eyes and face and hands really bad, which obviously all immune. Her plan is to fatten me up with with Protein shakes, healthy ones and I’m thinking of going to the YMCA near my house to just relax in the warm weather for my muscles and pain. My weakness is at the lowest it could be which honestly upsets me the most. I started out last yr at this time at a ‘9’ which now I can barely get past the ‘0’ on the strengh test. It concerns because I’m laying in bed all day, you don’t move your body you get get weak, its just that simple. But, up until now I wasn’t allowed to do the slightest of exercise or PT.

Well I’ll tune back in soon, I just got a web cam so I’ll be using that on here and if anyone would like to get in contact with me on that my name is Lymeaway77 on SKYPE

Hope Everyone had a wonderful Thanksgiving and Safe Holiday:-)

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.

Not such good news lately…

Well..My mom spoke with the nurses and doctor’s taking care of my Grandfather. It does not look good..they don’t think he’s coming back home, ever..I’ve just been in such shock and disbelief. None of us could sleep last night, just can’t believe he’ll never be back in his apartment again. I won’t join him on the porch outside when its nice out, or grab breakfast with him. When my mom came to me the other day to tell me what was going on she said she unfortunately was not shocked. She said she had a feeling..she felt he hasn’t been completely right even since surgery. I was surprised because I thought he did well when he was in ICU. She said yes, but he was still confused at times then. I figured it was his Anesthesia he was given since that can take up to a couple weeks to ware off…she said nope, the tumor was already growing back. Her and her brothers already decided their not going to put him through chemo & radiation, he’s been through enough. He’s 80 and its not worth it if he may only get a couple months out of it. I don’t blame her..if it was her or my dad I wouldn’t either, unless I knew they had at least 2yrs or more of a good life yet. My mom is already trying to find arrangements for him at a facility like a group home for 24hr special care. We would love to bring him home here its just he will need round the clock care. My mother is devastated, she came to me early this morning since I was up most the night not sleeping with puffy eyes and tears. She said its killing her already because all he keeps saying to her when he’s been awake is that he can’t wait to come home to his apartment and that he wants to have a big party with all his friends and go on a family vacation. Just breaks our hearts:-( 

My mom spoke with a group home that is litterly right behind my parents house, within walking distance and they said they have room for him when Moss decides to release him. We just don’t know how were going to tell him…he’s going to be devastated.  My mom told his girlfriend Vi last night..she didn’t take it too well, which is expected. I think she wanted to believe like some of us who have been in denial that he was getting stronger. He’s off IV fluids for now since his blood pressure has been a little more stable. The doctor said his platelets are low though, which are definitely clear cut signs of his Cancer. The nurses had been giving him Ritalin, a drug normally used for to calm down kids with ADD. Apparently in grown adults it actually has the opposite effect and wakes them up. They did get him out of bed the other day to use his walker so that was a good thing. He even went to the dining room with my Aunt and Uncle and his girlfriend. Both my Aunt and Mom said they have noticed his confusion. He often thinks lately he’s in his apartment and thanks them for stopping by to visit or says he needs to go to bed to get up for church tomorrow. Then other moments he seems clear. The tumor has brought out sides of him though, kind of like Altzheimers, that we’ve never seen. He’s gotten angry and he’s suddenly a comedian as well. Anyway..on a good note my mom finally spoke with someone from Temple Hospital after receiving a letter in the mail about his fall. She got a REAL APOLOGY and they seemed honestly concerned and said they felt very sad for him and my family right now. I think it made my Mom feel a little bit better after his fall and all.

The best thing we can all do now is just pray for him and give him the comfort, love and care from us that he needs. I know this hasn’t completely sank in yet for me…I was over his apartment the other night looking at a scrapbook album my sister is making for him of the cards he’s received and pictures and just burst into tears. I found myself praying to God and my Grandmother asking why..I guess there never really is an answer as to why things happen the way the do. I just can’t get over how unlucky this family has been with health problems over the past 2-3 years, its been one thing after another. I even had discussions with my Mom and Husband this week over my IV treatment, its been almost 8 months now and they said they are having a hard time watching me go through all of this, especially with Pop Pop being sick. Their worried its going to jeopardize my health worrying about him. What am I to do though???? I’m not stopping my treatment, I’ve come to far.

—I did have a bit of a mental breakdown this past week, but I was undergoing a lot of stress on my body due to another UTI from the Lyme and I was highly frustrated with my Doctor and her office. I had a fever and all with it about tow weeks ago and was in a lot of pain.  My Husband and Mom were extremely frustrated, along with myself because I couldn’t even get a hold of anyone at my Doctors office to call in a simple script. They have been known lately do be pulling this crap with their patients. In fact over the past year my family and I haven’t been feeling as confident about my care there. We were giving them a little break since my Doctor was enduring some hard personal things goign on in her life. Now thought after the grief I went through almost two weeks ago, and a very upsetting phone conversation that was COMPLETELY out of line that I had with my Lyme Doctor (of 5yrs now) and some of her staff, ultimately lead me to hanging up the phone and crying in disbelief. My Husband and I were so angry and hurt do to the lack of responsibility she had and concern the office has in general for their patients. I mean my Mom and I have been driving our butts their every Tuesday for 2 1’2hrs, which by the way takes up our WHOLE DAY, and shelling out well over a 2,000 per month for care!! Now, unfortunately due to the lovely medical system the CDC and the IDSA has created for Lyme patients like myself, no Lyme Literate Doctor will take insurance for reasons of loosing their license or being harassed by insurance companies for treating their patients with more than the typical 14day regimen of antibiotics. Believe me, people who get sick enough with Lyme WILL PAY for a Doctor like this because they not only are up to date on all the new treatments but are willing to fight for their patients even though they know their medical license may be at risk because they see the world of good their treatment has done in saving lives.

However, I want an equal amount respect and care for the time and money my family and I have spent traveling to see my doctor! I just can’t get over, after all the years I’ve been seeing my Doctor how much has changed in her office in just a matter of a year. Its disorganized, understaffed, and she has officially started treating her old patients like crap and the new ones (whom by the way, doesn’t even have time to properly treat them as well as she should be medically) like royalty!

 My doctor by all means, I have always HIGHLY RESPECTED. Which is why I have stayed with her as long as I have. I mean, she diagnosed me, basically saved my life from many years of not konw ing what was wrong with me, and she even got me into remission and some of my life back that I hadn’t had in soooo long.  I litterly put her up on a pedestal beause SHE IS THAT GOOD, Scientifically she is the best there is out there for lyme. Her bed-side manner was never the best but I had had many doctors who were but called me crazy and that I was imagining my pain, that it must be depression. Problem is.. if you decide you want to save the world of Lyme, and take on new patients, higher more staff, higher an assistant, whatever it takes to get the care that your patients deserve after the time we take breaking our bank accounts when there is no money to even give in the first place. If you ever feel like your health in in jeopardy and your care is not what it is, move on the Doctor is not worth it!! Believe me, I’ve been there, done that.

Now…I’ll be doing it again. I’m staying with my Doctor until I can find another one closer to my area. I already called one that came highly recommended from several friends of mine who have lyme themselves or people in their family who do. However I had to be put on her waiting list, though my mom said the Secretary said it shouldn’t be too long.  I want to finish out my treatment with the IV Antibiotics so I’m just going to find a Lyme Literate Doctor in the PA area whom I can do just that with. If I don’t see results then I will move on to other things. The hardest thing about this is Lyme treatment is that it doesn’t come cheap, my Husband and I just received a bill in the mail the other day saying we owe a little over $1,000 for home care that I had for only 29days (5 visits) that  my Insurance has refused to cover….luckily I have wonderful parents who have been able to help us out..although I’m not sure for how long. With the way the economy is right now I’m not sure what the outcome will be for me with treatment.  I’ve even met people who have lost their homes or have filed bankruptcy due to having Lyme. Its a very scary and financially crushing disease.

 I really would like to give this treatment a full try if we can afford it, as well as my parents. We’ve had many conversations with them about it, and for now my Husband and I have put our dreams of having a home on hold until I’m well. Its a hard decision for all of us, however I do feel the worst for my parents sinec they are shelling out the majority of the bills since I can’t work and am not on disability…I’m thinking of filing but I may have to get a lawyer, somehow they don’t see Lyme as a disability. I’ve talked to several people and they warned me how horrible they will be to me. I don’t get it…I’m unable to drive, use a cane and wheelchair half the time, and can’t work?! Makes no sense- always amazing to me how corrupt our health-care system is, yet I’ve known of people who have been on disability who have the lesser of my problems and have received it no problem.

My Grandfather

So much has happened since my last entry and this time I’m not writing about whats going on in my life, I’m hitting a subject that most people in the world can relate to…CANCER.

My Grandfather, who lives with us got diagnosed with a Malignant Brain Tumor called a Glioblastoma . Its not only been a COMPLETE SHOCK to all of us but, it has been extremely hard to accept the fact that he had been a very healthy 79yr old Man who now might not have much time left with his family.  This type of tumor he has not only grows within months, but the survival rate even with surgery is not good. The worst is, if you knew or know my Grandfather..well there are no words…he is the most amazing person I think I’ve ever known, he has such a good heart and a love life and his family. He Has never said a bad thing in his life about anyone. Has never raised his voice at his wife nor family. I’ve only ever seen my Grandfather angry once, when my Grandmother got sick; he questioned everything in his life. 

Everyone I know loves him. Even the places that he goes out to eat at during the week he is a popular man. They have sent cards and have called my Mom hoping to see him again soon in their restaurant.  Our phone was ringing off the hook so bad everyday with phone calls to see how he is, that it got to the point that my Mom had to ask my Dad and extended family to help return all the calls that we were getting.  My parents, as some of you know who are in this stage of your life, they now are taking care of their parents. However, My Mom never imagined nor did we that she might now loose another parent so soon again.

The thing that has made this whole entire family angry over this is not only is he a GOOD MAN, but he has just suffered a very hard 3-5 years watching his wife die of Dementia Altzheimers, and many years of her being severely ill since she was in her late 20’s with many other things. My Grandmother lived her entire life in pain, although if you knew her, you’d never know it. I have never seen anyone love someone unconditionally as much as my Grandfather loved her. They had an indescribable love even in their late years. One that you don’t see often in this day and age! Over 5o years of marriage..I’ve only been married three years and I can only wonder the pain of his loss. Even when as sick as she was with her Dementia, he took care of her night and day, bathing her, dressing her, feeding her, along with the help of us at times. Of course refusing to put her in a home.  Since I was a little girl I always wanted that type of relationship with a man, and a husband like my Grandfather. luckily by the Grace of God I married that kind of Man. He is my ROCK, MY BESTFRIEND, and I don’t know what I’d do without him. He reminds me in so many way of my Grandfather, which makes me love him even more♥

After many talks with my Grandfather telling me how much he missed my Grandmother, admitting that he lost her a long time ago when she became sick, she wasn’t the same Shirley. He has longed for that Companionship in his life since she passed. He always felt guilty for feeling that way, but we told him there is nothing wrong with wanting that in our life. Then around June he met or should I say knew an another amazing woman who has captivated his heart. The wife of one of his deceased friend’s Bill who died of cancer three years ago. They used to play baseball back in the day together. They both say its as if my Grandmother and Bill knew they needed eachother. She has been there through this whole family ordeal, sticking by his side. We are so grateful for her and truly believe that my Grandmother sent her to him, to help him through this journey. Unfortunately the time they have together seems short-lived due to this tumor. Which makes all of us so mad since he finally seems HAPPY AGAIN since my Grandmother got sick and passed on. I hadn’t seen him smile in so long…and she’s brought that back into his life. He’s been like a high school boy in love!!

When my Mom got the diagnoses and was told by his doctor that they could do the surgery, but it might only give him 14months, maybe less, or more. It just didn’t seem fair…I honestly don’t know how my Mom is keeping it together. Since he lives with us we all blame ourselves for not seeing signs sooner. He hadn’t been feeling good around July, but the doctors thought he was having mini heart strokes…until he got an MRI and we received the bad news. We were told after his surgery almost two weeks ago that the tumor was the size of a grapefruit. They had gotten most of it out and he seemed to be responding well, until we received a call from my Dad and his girlfriend that ‘Someone’ had moved him out of ICU without speaking to my Mom and he tried to get out of bed to go to the bathroom and fell!! A nurse left his side for at least 20mins or so knowing that he had to have supervised care. I mean this man just had brain surgery a week ago!! Plus Anesthesia stays in your body for at least a week or so.

When we got the call my mom looked pale as a ghost. Not only did he fall on his head but broke his nose as well and was laying there apparently unconscious for over 15mins!! How does this happen at a City Hospital in Philadelphia, where you think your getting the proper care he needs??!! The nurse was suspended for a day..big whoop and no apology from anyone at that time. My Dad said he looked so bad from the fall when they came into his room, dry blood still on him and his face puffed up and his left Eye Black and Blue and swollen shut from the fall. He told us he doesn’t even remember what happened to him. When I saw the pictures my dad took with his phone I got so emotional, I had to put it down. I didn’t even recognize my own grandfathers face it was so bad!! It was HEARTBREAKING..My Dad and his Girlfriend were so sick to their stomach by the time they got home from the hospital. My Mom on the other hand in disbelief that this could of happened, knowing that this will fully set him back. He was to undergo therapy at a center a week ago near by, but now his condition has gotten worse.  The worst of it is no one knew who ordered him to be transferred out of ICU, and my Mom after three messages to the doctor that night no one calling back to even apologize and fix the situation. We are told that the fall may have set him back due to his strength and recovery time.  I just can’t imagine a 79yr old man enduring such a thing. Surgery is bad enough, but now this! 

The best way I’ve tried to think of out of this whole situation is I have been so blessed to have such wonderful Grandparents who lived here for over 10 yrs. Thats something I’ll never forget, the memories are sacred, and I have to believe everything happens for a reason even when its not they way I or my family would want it to. I just pray that he will recover from the pain he is enduring and that my family, especially my Mom can get through this hard time in her life.

 

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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

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

**LymieMom Meeting CANCELED** 1/24/16

 ❄️☃❄️☃❄️☃❄️☃❄️☃❄️☃❄️

        

Sadly due to the Blizzard of 2016 this past weekend I will be CANCELING our meeting today in Quakertown, PA at Panera Bread. We have a long driveway and sadly our plow guy to get us out won’t be here in time. Plus with the almost 30 inches we got in my area I would prefer none of us take the chance of being on the roads and getting hurt since I know most of this region got hit hard.

I will most likely be rescheduling for March sometime. Only because my February Weekends are already booked up with Birthdays and other Social Events. If anything changes though and I’m able to schedule something for February I will update you all. You can find the links to our Group Here on Facebook⬇️

LymieMoms January Meeting-CANCELED
LymieMom Social Group-UPDATES
LymieMom-SUPPORT GROUP

Have a wonderful rest of the weekend being snowed in and stay safe Ladies & Mama Friends!
~Alison 

January LymieMoms Social-1/24/16

LymieMoms Social Group  had taken a hiatus the last several months, but we are back now to our meetings starting up again. I do hope you all had a happy and hopefully not too painful Holiday and were able to enjoy your time with your family and friends. My family and I were very busy running from one family party to the next, church service, and of course having family of our own over the holiday as well and celebrating the New Year too. Least to say as nice as it was this year, I’m glad its over. I’m exhausted and ready to get back to some normalcy and could definitely use my Ladies time with some of you beautiful Mamas!

Our newest meeting coming up will be on Sunday January 24, 2016 from 1:00-4:00pm at the Panera Bread in Quakertown, PA. If you have a Facebook page you can find updates here LymieMoms January Social These meetings are open to Mother’s who have Lyme, Mother’s whose children have Lyme Disease or newly diagnosed, those interested in learning more and speaking with others who have been through Pregnancy and Lyme Disease or want to start a family.  I understand myself because back in 2010 when my Husband and I talked about starting a family it was a tough choice and I found that the friendship and advice as well as hearing experiences from other Lyme Parents out there helped me to make a decision for us. Plus making new friends for me has been the bonus 🙂 As of now Children are not allowed to join our meetings only because our full attention will be on them, I apologize but come the warmer months I promise to have several events so that our kids may join in and meet each other.

A note as well…I currently am looking for LymeMom Social Leaders for your town and county. Sadly I can’t be everywhere each month and as of now I’ve only been able to have meetings in PA, my goal is in surrounding areas as well such as Delaware and New Jersey. If only there were two of me! Its not a huge responsibility so if you have any interest please contact me at Lymeaway77@gmail.com

Well, I hope to see some new faces at this meeting this month! Also, if there is snow that day please look for updates either on our Facebook Page LymieMoms Social Group or look here on my Blog for updates.

~Alison

Come out to our October LymieMoms Social Event! 10/11/15

 As I’ve mentioned before on other posts. I started an online Support Group for Mom’s with Lyme Disease called Lymie Moms Unite, who’s kids are suffering from it, as well as for those who are pregnant or looking to start a family and in need of support and friendship. Many of the Mothers in my online Facebook group are young Mother’s who have sick kids and looking for answers and support. Others are there for information. We also have Veteran Lymie Moms who are there to help those who are now going though their own journey. Its amazing some of the friendships these women have made with each other already and even myself have. Im very big on a drama free and luckily we’ve never had that either. I’ve heard from some of the Moms telling me they feel safe in this group, which was the approach I wanted when I started this. A no judgement group where Mom’s can vent if needed, come together and also support one another without bashing one another for their own choices in their journey to have a family and the kind of treatment they do. I want to make it clear too because I’ve had others ask. This group is not just for the young Mother’s out there. We welcome Mother’s with grown children as well as Grandmother’s who may have a grandchild who as sick as well.

Recently, this past summer, I had an idea to get local Mom’s together each month, or every other to meet in person. That idea turned into the LymieMoms Social Group of PA/NJ/DE. We had our first meeting with 4 of us there at a Panera Bread in Montgomery County, PA. It turned out wonderful, we had lunch, shared our stories and advice with each other. I realized soon it very much something that was needed and was happy that I started it. The plan is to change locations every time which is what I’ve been doing so far and its turned out great! I only wish I could travel to each state and county meeting more Mother’s out there, but sadly I am unable to do that I am only one person and have a family of my own. My great hope is that we can do this wherever the Social part of LymieMoms is needed. Therefore I’m asking if any of you are interested in being a LymieMoms Host in your State and County please let me know by emailing me at lymeaway77@gmail.com The volunteer job does not come with a huge responsibility. You would just have to pick a place each month or every other to have lunch, dinner, or coffee then invite people. The key is to get together without spending too much money. There is no money that you have to put up front. Its just a matter of making a commitment to keep the group going. I also doing mind helping out with the invites if  needed through social media.

I do hope to see some of you local Ladies, Moms, soon to be, etc. in the PA area at our next meeting which is this Sunday, October 11th @1-3:30pm at the Wegmans Pub in King Of Prussia, PA. Please RSVP at the link below on Facebook and I hope to see you there!

Alison

LymieMoms Social Club of PA/NJ/DE (Link to Group)

OCTOBER LymieMoms Social Event 10/11/15 (RSVP Here)

Follow Us Here! LymieMomsUnite Instagram

Lymie Moms Unite (Facebook Online Support)

August LymieMom Meeting **CANCELED**

I apologize for the inconvenience, but due to the lack of people officially attending this Month’s Moms get together in King Of Prussia, PA, tomorrow the 23rd of August, I am going to have to CANCEL.  

I think since the last two meetings have not been the best with the amount of Women being able to attend I am going to try to do this every other month instead. We’ll see if we get a better a turn out that way. I know it’s hard in the summer too with families vacationing and such as well so maybe in the Fall it will be easier for everyone. 
I will still be having one in September and then another in November. Dates will be announced soon and it will still be at the same place as this months was supposed to be, Wegman’s Pub, King Of Prussia, PA. Just continue to look for my announcements on here and in our main LymieMoms Social Club Page or in our LymieMoms Support Group Page. Links are below. 
Thank you for understanding everyone and have a wonderful week ahead!💚💚💚

Alison P. 

Lymie Moms Unite Adminstrator 
LymieMoms Social Club of PA/NJ/DE
Lymie Moms Unite Support Page

LymieMoms August Social Event

 ***THIS EVENT IS CANCELED***

See Blog Post: August LymieMom Meeting Canceled 

 Come this Sunday, August 23rd @1pm in King Of Prussia, PA at the Wegman’s Pub. I will be hosting our 3rd Event for my Lymie Moms Unite Group that is on Facebook. I started the main group shortly after my Daughter got diagnosed with Lyme Disease at just 14 weeks old. This Summer I decided to expand it into a Social atmosphere for Moms to get together, build friendships, and support one another as well as share their experiences on what it’s like to not only deal with a Chronic Illness like this themselves, but raise a child who is suffering as well. I also found I had many others Mother’s contacting me about starting a family after they heard about our Surrogacy Journey in 2011 which created our now 3 yr old Daughter Hannah. 

The Group has become a wonderful outlet for Mother’s looking for support as well as those wanting to start a family while still in treatment for Chronic Lyme Disease or just regaining remission. 

My Group is open to any Mother’s battling the illness, children whom have it, those wanting to start a family and are already pregnant and looking for advice. This group has not only been a learning experience for myself, but I’ve made many wonderful friendships with other Mom Warriors. I do hope to see some of you in the Group as well as at our upcoming Social Events! 

As of now our meetings are being held at a different location each month in the Surrounding Pennsylvania, New Jersey, and Delaware Areas. I am looking to expand into other counties and states though. If you have any interest in becoming a Lymie Mom Host in your area please contact me at Lymeaway77@gmail.com and I can give you further details. It’s not a big commitment if you do have an interest. 

August LymieMoms Social Event

Lymie Moms Unite Group 
LymieMoms Social Club of PA/NJ/DE

My Daughter and I at our Interview on FOX29 on Mother’s Day of this year in regards to our story with Lyme Disease and sharing details about my Mom’s Group💚💚💚

  Mother’s Day 2015 in the FOX29 Green room 

 At the FOX29 Studio right after our Interview “Taking a bite out of Lyme Disease” 

 

Lyme Panel Discussion- 7/27/15 @7pm North Wales, PA

 

I will be a guest speaker again along with several other Lyme speakers talking about my journey and my Daughter’s with Lyme Disease tonight in North Wales, PA. Come out and listen to what others have done for treatment, what has worked what hasn’t and learn more to help you through your own experience with this illness! Hope to see you there. 
This is the info and link to this local Support Group run by Lee Gordon https://www.facebook.com/groups/PALRNMontgomeryCounty/

My Lyme Interview this Mother’s Day! 5/10/15

  “I’m Not Superwoman, but I’m Fighting Lyme Disease, So Close Enough” 

This Sunday, on Mother’s Day 2015, in early morning after 8am. I’ll be sharing my 30 year battle with Lyme Disease on Fox 29 Philly News and with so many other Lyme Patients out there who are fighting this. I feel so honored to have this voice to help those who may not know what is wrong with their children or their own health. My parents were not so lucky. They fought hard for 15 years to find out what was wrong with me, shut down by Doctor after Doctor and fighting with my Teachers and Schools too. 

I hope to inspire other Mom’s out there to never give up no matter how many times you may fall down. I am still fighting the battle and have come pretty far. With two relapses since March 2004 due to a number of things I was unable to prevent. I even had to deal with the diagnosis of my beautiful 3 year old daughter at just 14 weeks old in February 2012, born via Surrogate. I’ll be sharing her story too as well as talking about the projects I’ve worked on since for Mom’s out there to get the support they need. 

I was dealt this hand at a young age, but have truly believed after getting through some very dark times that this is the reason I was chosen this path. Yes, I could of went to college, had a job and maybe even a dancing career like I always dreamed of. However, if I did I probably wouldn’t of met the love of my life. Had a sensitivity towards others, a passion for living life to the fullest, or been given so many blessings and met so many other beautiful Lyme Warriors along the way. I know compared to many “Healthy” people, to never take a good day for granted. That doing things like being able to cook dinner for my family, go to the grocery store and run errands, give my daughter a bath or play outside with her means so much because to a Mom with Lyme those days are far and few between.

I’m so appreciative of everything God has given to me. Especially my family! They have sacrificed so much and have been effected emotionally and financially due to my illness. I hope on Sunday I can give more Parents out there hope and those just diagnosed to keep fighting and never give up! One day we’ll get the respect this illness so rightfully deserves from Doctors, the IDSA, and others. It’s getting better…I can feel it and see it everywhere around me. I pray it continues even if it’s one step at a time.    

Me speaking at the Capitol for the Lyme Bill, my Wonderful and Supportive Parent’s John & Roxanne and my Daughter Hannah as a baby. 

(left to right) Protesting with my Sister Jessica, myself, friend Dawn and fellow Lyme Warrior Morgan. 

My Husband Brian and Daughter Hannah Marie❤️

Doctors Say Tick Borne ‘Powassan Virus’ Is Worse Than Lyme Disease

So scary!!

Lyme Handbook

Excerpted from  CBS New York: (04/08/2015)

NEW YORK (CBSNewYork) — It’s even worse than Lyme disease. Ticks in our area have been found to carry a rare, potentially life-threatening, virus.

As CBS2’s Tracee Carrasco reported, doctors have warned that the Powassan virus, a rare, tick borne illness could be serious. It doesn’t have a treatment or a cure.

“The doctor just has to support you during the acute illness and hope that you survive,” Dr. Daniel Cameron explained.

Dr. Cameron is the President of the International Lyme and Associated Diseases Society. He said that if bitten by an infected tick you can get the virus within a matter of minutes, and while the symptoms are similar to Lyme disease, they are more severe.

For more:  http://newyork.cbslocal.com/2015/04/08/doctors-say-tick-borne-powassan-virus-is-worse-than-lyme-disease/

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