IV Antibiotics: Currently My Best Friend

I just wanted to let you all know I am back on my feet and continuing my daily treatments at the hospital. I am all hooked up to my IV Antibiotics for the next ten days in hopes to clear up the infection I have not been able to rid myself of. Sometimes I forget that my immune system is non-existent! It has been a harsh few months and my nausea has been kicked into overdrive.

One thing I know for sure is that I am exhausted. I sleep most of the day and then go to the hospital for my treatments and sleep while I am there for at least 4hrs everyday. Then I come home and sleep until my mother comes home from work. That is not until 7 or 8 pm (if I am lucky to see her that early because she works so hard). After we relax and watch a couple of hours of TV it is back to bed for the night before I know it. I wonder if it is normal that I am sleeping as much as I am? Possibly I am a little down in the dumps and don’t even realize it. Good thing my dogs still love me regardless of how I feel.

I have a little bit of time to get ready before I am hospitalized in Vancouver for three weeks, so I have started to do some research. I have been phoning hotels and asking if they have a discounted hospital stay rate because three weeks in a hotel is going to be pricy for my mom. This also will be the longest stay I have had in hospital since my Celiac diagnosis. I am a little nervous that I will not be able to eat any of the hospital food due to my new allergy. This will just place added stress on my mother to try to find me gluten-free options from restaurants around the area. Who wants to deal with that nonsense? I must also be realistic in the fact I don’t even keep my food down enough to justify her running around town trying to find me something to eat.

I have also been thinking about what to take to the hospital to keep me occupied while I am not undergoing a test or procedure. I have a feeling a lot of the tests will be painful, so I have to find something to keep my mind off of being in hospital. Scratch tickets can keep me occupied only to the point of going broke at some point. So if anyone has any suggestions out there for good magazines, books, or games that you know of let me know!

Pamela

A Quick Update Before Another ER Visit

Well I just wanted to let you all know that I have been struggling with my health and my quality of life this past week. My nausea has been relentless to the point I have been getting sick regularly ever four hours at least. Yesterday I showed up for my IV Therapy holding a bucket and was getting sick the whole time I was there until my Ondansetron (Anti Nausea Meds) kicked in. My nurse asked if I was making a mistake by not going to the ER because I am looking so rough. I just let him know that I wanted to try to kick it myself before I went to the ER. Well I am sitting here tonight and I have to face reality, I can no longer do this on my own. There is something wrong, probably an infection, and I am going to need medications to kick it. I just am not strong enough to do it myself.

So my plans are to go to the ER tomorrow instead of my IV therapy treatments to try to figure out why I am so sick. In the meantime I should also inform you that I am scheduled to be hospitalized for three weeks in Vancouver starting November 5th. I am not excited about this at all and there will be lots of tests and procedures I am going to have to endure. My only hope is that the doctor can find out all my “weird” and “unique” health conditions and I can finally be diagnosed so that possibly there is treatment for some of my conditions.

I honestly don’t know what to think at this moment in time because I am just so tired. Tired of dragging my mom to all the ER visits and making her spend countless hours, on uncomfortable chairs, staring at a daughter she desperately wants to help. But she can’t. No one can. Tired of the pain and exhaustion. Tired of the nausea and vomiting. Tired of just being tired.

Mostly I am tired of listening to others argue about stupid trivial life matters. Sometimes I just want to slap people who are being so spoiled and complaining about how bad their life is. They need a dose of reality. When the only thing they are fighting over is money or relationships, it makes me sick! For crying out loud, you have a life and family that loves you. You have money beyond words, partners, businesses and jobs, not to mention your health and quality of life. What more do you want? What more can you ask for in life? I would love to just be able to stop vomiting.

I never have understood why others breeze through life, sometimes they are terrible people hurting others as they find “success” in life. Why is it they have it so easy? Why is it others like myself have to endure day after day of being sick and in pain, when we have done nothing to others and have not even had the chance to contribute to society? Where is the balance in life that we are to seek out? Hell there is no balance in my life and others who are sick! Our lives are out of control, its like being on a spinning jungle gym that never stops. Only sometimes you are able to get off the jungle gym, but that is only when it spins so hard out of control you fall off and end up in the ICU.

I don’t expect these tired ramblings to make any sense and I know I promised and upbeat story but I have to be realistic. My life right now is not upbeat and I needed to let you all know why I have not written in a while. So I am off to the ER tomorrow with hopes that I have an infection that can be cured with simple IV antibiotics and then I can get on with my life. I need to be as strong as possible before I am hospitalized for three weeks. My hope is that I can get back on my feet and keep my face out of a puke bowl. Sorry for being so blunt, but that is my life. My significant other who hangs around with me all day is… my puke bowl. Wow what a great life eh!

Pamela

Experimental Procedure Meltdown

The only way to start this post is to tell everyone right from the beginning that the first round of my experimental treatment failed horribly. The doctors were quite upset because it did not work. Not as sorry as I was because the treatment did the opposite of what they were hoping. My pain was increased substantially, not decreased. It will take almost 10-14 days from my initial treatment to bring my pain levels back to where they were before I went for treatment.

My arms and hands are almost back to being able to function again with a moderate amount of pain. As  mentioned before I was scheduled for over four hundred (400) injections and my first round of treatment lasted just over an hour and I endured just over one hundred injections (approximately 117 injections were charted). My anesthesiologist was there (she is my chronic pain specialist), as well as other physicians, and she put an end to the study after she realized it was only making me worse.

Unable To Sleep Once Again

Well I am just about ready (only 5 hours away) to go for my new treatment and of course I can not sleep. I am nervous. I think I have had too long to think about the procedure and the side effects the doctor told me about. I am well aware that it will be painful, but I am going to still go ahead with the procedure anyways. I hope that they can learn something… anything! I will let everyone know how it went and just exactly what was involved.

To my knowledge so far the procedure involves injections (around 400, yes that is not a typo, 400) that will be done head to toe, and takes at least 2 hours minimum. After the needles are inserted they will be injecting a solution (no idea what it is) into my nerve bundles. The treatment takes weeks to see results and the increased pain can last up to 7 days after the initial injections. Ironic, because I am scheduled every week for these treatments. Now my math is not all that great but every week is every 7 days… so I am not to sure if I will see any improvement in my pain for awhile. In fact my pain sounds like it will be worse for an unknown amount of time. I guess that is why it is “experimental”.

Pamela