Enjoy Today!

Hello Everyone

I wanted to start off by letting everyone know that this will be my last entry for awhile, and quite possibly forever. My health has gotten to the point that I have not been able to keep writing. The real truth is my health is so poor now, my life is consumed with medical… well Everything!

I gained another specialist who wanted a detailed medical background. She is fantastic but brought reality to me when she stated I had 18 separate medical illnesses and diseases. I know one thing is for sure once my stomach died (Gastroparesis), I realized even the joy of food was taken away from me. I lost so much weight the doctors made me put in a feeding tube…But what’s another surgery right? So now I have more tubes and wires coming out of my body than I can handle.

All I can say is…

I wish that I could still go swimming. I wish I had the energy to go dancing. I wish I could get the chance to smell tropical rain. I wish I could watch a sunset over a beautiful body of water.

But what I really mean is I want to be normal…

I wish I was exhausted from a baby keeping me up all night. I wish I had a mother in law who drove me crazy. I wish I had teenage kids to get frustrated with.

The real truth…
I wish I could have one day, just one day to feel normal.

These are things you might still be able to enjoy today. Take the time, while you can. Why not… enjoy life?

Pamela

Scared, Confused, and Still Waiting

I am out of the hospital and am trying to take it one day at a time. Eating is an issue as my body is rejecting solid food and even some of the liquids we are trying to prepare. It is a good thing that I had extra weight on me due to the steroid treatments I am on, so that I had some pounds to lose. Everyday has been a struggle and I have noticed it hard just to get up in the morning, I am so exhausted and sore.

I am finding it so hard to talk about, or even write about, my experiences from the last ten weeks in hospital from when my experimental procedure failed. I do not even know where to begin to discuss the trauma and horror show, it was continuous. My head is still bombarded with flashbacks and memories, and all that occurred from the experimental treatment. Not to forget the gong show that happened because of it. The memories are permanent, and I will admit, I am afraid that I might lose my mind because of all the new medications they have me on now.

During the treatment I ended up being trapped in my own brain. I was literally TRAPPED! There were two Pamela’s. I knew everything that was going on around me but could do nothing about it.  I was unable to communicate what was happening to others and I was unable to tell them that I (the original Pamela) actually still existed and was still alive. Because there sprung out another Pamela who began to regress as time passed. I regressed all the way to about a three-year old. I was walking with a walker and no one could understand what I was saying because it was gibberish that made no sense. I was trying to communicate that another Pamela was trapped in my brain but it was hopeless. It was hell.

I Am Struggling, But Still Going.

I hope that everyone’s summer is going well. I am out of the hospital but it has been difficult. I have found myself unable to keep any food down and have been surviving on peppermint tea and vitamin water. As you can imagine my body is struggling and starving. I am hungry but can’t keep anything down. It is so embarrassing because when I go out into public I have to keep a bowl or bag to be sick in.

My nausea is so bad and the doctors have given me the strongest anti-nausea meds, and they just are not working. I wonder just how long my body can actually handle not having any nutrition. I have tried eating just little pieces of cereal or crackers only for them to come back up within minutes later. There are times when I think to myself, and not lightly either, that I would actually trade in my nausea for more pain if I could.

A New Year… IVAD Prayers All Around!!!

A whole year has gone by and I am still here! What the heck, eh?

Please don’t misunderstand me, I am not complaining about the fact I am still here with you. But, I will be honest about not feeling confident or strong enough for another year of my increasing pain. I know I will not get any better and that is my reality. I truly am at peace with that. I just struggle with the pain… I do not understand sometimes what lesson is to be learned from having this pain.

A Window: Seeing Joy In The Simple Things

Here I am staring at a wall, a curtain and thank God a window! Yes, I have a window for three weeks that looks onto a community garden. Having a window while in hospital is one of those lucky moments in life. It ranks up there with licking a wooden spoon with freshly beaten batter on it, or laying under a freshly cut christmas tree all lit up. When you are cooped up with hardly any fresh air, it is so nice to at least be able to look outside. I might have to share a room, and a shower (and a bathroom)… but I have a window!

I am doing pretty good. My first week is over, and I have a little bit of free time to write a quick update for you. I am busy as heck that is for sure! I am going non-stop with appointments, tests, and procedures. Whatever they can come up with I have done with a smile. Mainly this first week has been more laid back, as they are gathering background info and medical history. Most of my time has been filled up with interviews.

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

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

A Journey With Sepsis

As promised, I tried to pull together the few memories I have of being hospitalized this past week. My hope is to show people just how important it is to watch for signs of infection with any part of your body, and at any time. The most important signs of infection can be subtle if you do not have a great immune system. These signs will take longer to show up, so it is important to check for the following simple warning signs:

– Redness around a wound or incision. Make sure to look for this redness and notice if it grows in size at all or streaks up anywhere (such as up your arm if the wound started with your hand). The redness should not be present.

– Is the wound hot or warm to your touch? It shouldn’t be.

– Is there any pain that is new or unusual? You obviously have a wound of some sort that must hurt but look for “new” pain that has started. You should be getting better not dealing with “new” pain.

– Finally, does your wound have discharge or new swelling?

I am not a doctor as I have stated before but those are the warning signs I have always been told to look for. Now in a normal person if your infection has spread you will probably also experience feeling unwell, fever, chills, joint aches and even confusion.

I am on steroids the rest of my life since I have no functioning pituitary gland. So these signs and symptoms are always masked or hidden. If you, or anyone you know, is also on this long-term treatment of steroids it is even more important to constantly check for infection because you may not have any warning. Darn steroids! Even though we did notice some signs of infection and reacted to them in my case this past week, the infection had already taken hold of my system since my immune response was so delayed.

Struggling To See The Silver Lining

I was not too sure where to start with this post but I wanted you all to know I am now out of the hospital and back in my own bed, thank God. The next post will explain my hospitalization and all that lead up to it. This post will just be ramblings of someone who is tired and has had a long week. So with that being said…I am struggling.

These past weeks have been really hard and I have been trying to battle this illness/infection, but I am not coping well. I know I am not the only one out there who feels like they can never get a break, but I really do need something positive to happen to recharge my batteries. This past hospital stay was longer than I ever anticipated and I was shocked at just how quickly I fell ill. Not to mention just how serious it was.