My YouTube Video, Part 2

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

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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.

2nd update on Grandfather

My Grandfather is now out of the Hospital, THANK GOD and on to the rehab facility. They took him by ambulance this past week. The nurses say he’s still to weak to do any physical therapy, they’ve tried getting him out of bed but his blood pressure was very low the other day and he was dehydrated. This is definitely going to be an even longer road for him now since the fall, its so upsetting to all of us since his surgery seemed to have went well, problem is the Doctor has told my Mom that there is always a chance that the surgery will not not work as well as they hope for giving him time… My mom has decided to file a complaint with the Hospital due to the fall, and the lack of sympathy or help from the staff. She said all she really wanted was someone to apologize and for the head of the hospital to personally apologize! Were still thanking God that the fall he had did not land on the side of his face where he had surgery. He still is black and blue around his eye, but the swelling has gone down and he’s healing well, just can not believe it has covered the entire left side of his face! Were a little worried that the tumor is already growing back, he’s been complaining of headaches again his confusion is getting worse. The doctor has talked about Chemo and Radiation to my parents. A decision my Mom has considered, yet at this point she won’t say yes and put him through more. 

Pop Pop told us he feels so lucky to have received so many cards from people and prayers. He feels very lucky to have people like this in his life. I think he is holding up as best as he can. The majority of the time he is sleeping. Were not sure if its due to the surgery, the fall, or the tumor possibly growing back. We feel so bad because he’s so frustrated since he’s been in bed for over 3 weeks now. I know I’d be going out of my mind! Were not sure how much he is aware of his condition and whats happening. He hasn’t asked my Mom many questions, which I think she’s thankful for other than asking her if she has connections to get him out of there. My mom said he told her he wants her to help him make an escape from the hospital they have him at right now, she told him she doesn’t have those kind of connections:-) He laughs…he is definitely homesick and wanting to come home; its always very hard leaving him, he begs us to take him with sometimes. Vi is there to see him every chance she gets, she’s been AMAZING.  He talks non-stop about her to all the nurses, its so cute! The place he is at for physical therapy is near Jenkintown called Moss Rehabilitation Center. We have heard many good things about this place from other people so we feel very good knowing he is in good care. He is now a half-hr closer so that’s great for all of us and him as well. They’re expecting him to be there for at least 5-6 weeks. Going to be a long road but I will keep you updated..

I’m  a bit frustrated because I haven’t been able to see him as much as I’d like over the past week or so..its hard because he’s asked for me:-(  My Dad and Mom told me he constantly asks how I’m feeling to my parents that he’s so worried?! He is just unreal, such a big heart, best Pop Pop ever..it really sickens me that this is happening to him and I keep thinking we’ll all wake up from this bad dream.

Me and my Pop Pop

Me and my Pop Pop

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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