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

1888484_10152390923879155_2053769405_n(1) 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)

Tune in to the DR. PHIL Show this week to hear about stories of those with Lyme!

PLEASE tune in to your local cable network Friday, April 13, 2012 to watch Dr. Phil interview Brooke Landau Weather forecaster about Chronic Lyme! Brooke has been thoroughly active in the Lyme Community and has shared her experience in dealing with this illness and will now share it on the Dr. Phil show as well as several others.

ON THE DR. PHIL SHOW Deadly Consequences

Dr. Phil’s guests say they’re dealing with serious illnesses that could have deadly outcomes. First, Annette says as a mother, she wants the right to euthanize her severely-disabled children, 42-year-old Jeffrey and 43-year-old Janet, who have been institutionalized for more than three decades with the rare genetic disorder, Sanfilippo Syndrome. Her only legal option is to remove their feeding tubes, which she says would lead to a painful and inhumane death. What would you do? Hear from acclaimed trial attorney Geoffrey Fieger on why he thinks the laws against euthanasia should be changed. Then, former model Stephanie Vostry, 25, says that she suffers from constant pain and seizures caused by what some doctors believe to be chronic Lyme disease, and others wonder if she’s faking. With natural medicine providing minimal relief, hear how she says she’s turned to self-medicating to dull her pain. Plus, chronic Lyme disease hits close to home for a Dr. Phil staff member and a San Diego weathercaster.

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My April Update on Treatment

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more about “My April Update on Treatment“, posted with vodpod

 

 

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 YouTube Video, Part 2

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

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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