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

Gotta Love the PICC!

Well I have been struggling with keeping people up to date with my life in my blog and I am sorry about that. Things have been busy for me lately with lots of tests and procedures. The sad truth though is that my daily life is always the same thing over and over again. Pain, nausea, treatments, tests, and then more pain. Nothing much new other than that.

One thing that is new in my life, I now have a PICC line. I decided to get this while I am waiting for a surgeon to put in my central line. The nurses and I are so happy that I finally put my foot down and requested to have this put in. I was so sick and tired of having to get new IVs daily. It was sometimes painful and it was a pain in the butt for my nurses who had to struggle to find a good vein that they could access for my treatment.

Waiting and Praying Patiently

The verdict is in and it is what I was hoping for! I am finally going to be able to get a permanent line placed in my chest for daily access. I can not tell you how happy this makes me and a lot of nurses in General Daycare who will not have to poke me daily to get IV’s started.

I am either going to be getting an IVAD or a Tunnelled Line known as the Tunnelled Groshong. I would prefer the Tunnelled Line over the IVAD because, my mom who is a nurse, can access it in an emergency a lot easier if needed. Also, when I am having a real hard time eating and keeping food down, I can be feed through my Line but I can not do that with an IVAD.

An IVAD is esthetically pleasing since it is just neatly tucked under your skin and is completely hidden. That is not the case with the Line at all. With the Tunnelled Line your skin grows over the tubing, but that tubing and access point is always going to be sticking out of my chest. I will never be able to swim again and that does upset me. But there always has to be sacrifices made when you are getting a convenience in medicine, such as a permanent access line.

I can not wait to get my daily treatments through my new line. There is only one thing holding us up… I am waiting for a surgeon to take on my case. Since I have a probability of not waking up and am such a high risk case, there are not very many surgeons that will want to take me on as a patient. That is ok because I have only been waiting a week, and I am sure some doctor will take the chance.

Pamela

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.

Extremely Quick Update Before Vancouver Hospitalization

I just wanted to take a moment to let you all know that I have had a very rough week but am starting to get back on my feet just in time to be hospitalized for three weeks in Vancouver. I do not know what experimental tests or procedures the doctors will be doing but I am definitely not looking forward to the added pain that comes with these tests.

I am not too sure why I am so anxious about these tests. I have undergone hundreds of procedures (not exaggerating) and have had countless surgeries. It has been bothering me so much I have been thinking about it in-between my naps, since I have been sleeping almost 20hrs a day. My body is shutting down and making me rest almost every hour and I am finding this very frustrating, but I think I have realized why I don’t want to be hospitalized – false hope.

I know that the doctors will find some new and weird illness, but it is the outcome of these conditions that is bothering me. What new treatments will I have to go for and how will it affect my quality of life? My current health status can only get worse and I can never be cured. I have had many doctors be honest with me about this and I am grateful for their honesty. Now what will happen with my new conditions? How many will they find?

I know it has been a brutal year and it has become even worse in the last few months, but I am hoping to get stronger. Hope. That is a word that can kill you sometimes. If I end up hearing that maybe they can reduce my pain a bit, hope fills me up inside. But what happens when the doctors can not help in the end, can not fulfill their promises? False hope becomes the silent killer and the reality. The last thing I need anymore of is false hope. So I just want to go to the hospital, get all the tests and procedures done, and continue on with the rest of my life believing that my quality of life can stay the same it is now and not get any worse.

The reality of the situation is that I have to hold on to the good days and cherish those. This is easier said than done. Although I have not had a good  day in a long time, I know there has to be a few out there. I pray that everyone out there holding onto Hope (about anything) have their prayers answered soon.

Pamela

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

Up Close and Personal With An MRI

I want to give you a heads up that this post will be educational and not very entertaining.  I promised that I would inform readers about medical tests and procedures and today’s post is about going for an MRI. My goal is to help you navigate the medical system with a little less anxiety and I hope to reduce the stress that you may be experiencing.

So what exactly is an MRI, in simple terms? It is a big, fancy, very expensive machine that looks like a tunnel. You lay on a platform/stretcher and this platform raises and places you inside the machine for your scan. If you are a Star Trek fan, think of being in a photon torpedo as it is being loaded.

I Have Been Officially “Grounded” in the Hospital!

Sorry I have not written earlier but I have been hospitalized for the last few days. I am feeling a little better and stronger but wanted those of you who sent well wishes my way to know I am doing alright. I am still in the hospital so this post is short and sweet. I wish to be home soon where I can rest and recover from the comfort of my own bed.

Cheers,

Pamela

A Quick Post For A Few Quick Thoughts

I just want everyone to know I still have not heard any news about my scan yet and I do not expect to hear for a little while. The MRI has to be read by a certain neurological radiologist, and he has a ton of patients. Obviously the waiting continues and I have been going to IV therapy all this week to gain some strength. I am still having trouble keeping food down but am trying my best, thank you all for your prayers and well wishes.

I will be posting later on today/tonight about how my MRI went and try to answer some of your questions about what exactly an MRI is like. This will be a little bit more of an educational post so it will not be all that entertaining.  If you are a patient and are going for an MRI, or have a loved one going for one, and are wondering what they are like I will tell you.

I promise to be honest so I am warning the readers ahead of time… If you want to be clueless and just go for your test then do not read my post later on today. Take your happy pills, go to sleep, and wake up refreshed!

Hey, how come I don’t get any of those happy pills?

Pamela