My June thru September Update

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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 February Update

My update for February, sorry its been awhile..

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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.