Week 3

It's almost been three weeks since my first IVIG and my body still feels like it's fighting a battle. I am having a headache that never subsides (regardless of holistic, natural or western techniques), body aches, fever, restlessness, upset stomach and just plain blah feeling all the time. My mom and I have been talking to the immunologist and my primary doctor non-stop and we have decided that the cause must be inflammation. Just in case, I did tests for viruses that could be causing these symptoms - part of me hopes it's a virus and not a side effect from the IVIG and the other part of me hopes it's not a virus because, come on, can I really take much more? Either way I know that the doctors are doing everything they can for me and until this pain and fatigue subsides I just have to lay low and watch movies. The worst part is that being on the computer bugs my head - so blogging and schoolwork is not getting done.

My next IVIG is on May 6th - so about 9 days - and I am truly nervous. Everyone is saying that the side effects should be much milder and I hope their right. I'm missing everyone at school right now- as spring brings Athens nice weather and everyone is busy with midterms and such- wishing I could trekk up Morton to the library.

On a good note- my Mom took this picture during a doctors visit this week. They let me do the swabbing for viruses myself and I was very excited!!! The nurse certainly got some laughs at us :)

Happy Earth Day!

I hope everyone is outside enjoying earth day!!! Truly one of my favorite holidays!!! (P.S. it's 70 degrees here? I didn't think it was possible! Thank you mother earth!)

(and laugh)

Found this site the other day and must say that it's adorable.


http://cuteroulette.com/#/

Finally feeling a little better

It's been 12 days since my first IVIG and things have been rough. Luckily the past two or three days have been a little easier. I still have my moments of fatigue, headache and body pain but nothing as horrible as last week. I came down to Athens earlier this week so I could catch up on exams and papers. So far everything has gone smoothly. Just wanted to let you know that I am alive and functioning!

(and laugh)

For those of you who have known me for a while- you should know that I have a slight obsession with Arnold Schwarzenegger. Today on youtube I found this clip: http://www.youtube.com/watch?v=-Sfdax1MBK4&feature=youtu.be  and man am I excited. It looks like after the Governor's term he will take on a new task of becoming a comic book and TV show star!!!  Pumped!!

be well (acupuncture)

I am now on day five since my first IVIG and things are slowly getting better.  I am still dealing with a serious headache and body pain but nothing comparable to the other night. I decided to try something new to help with the pain and made an appointment to see an acupuncturist. Upon arriving we went over my health history and then I was given a short consultation about the history and purpose of acupuncture along with what to expect. Next he did a body scan with a machine to see how my "chi" or energy was balanced. I was all over the place with only 4 of my 12 "chi's" showing up as stable. Next he placed several needles in my fingertips, feet, and ear - then I laid peacefully for a half an hour with the needles in place. After that he took the needles out and he said it could take a few treatments to feel relief.  I'm already noticing I feel a little bit better. My headache is much more tolerable and my muscles aren't nearly as tight as before. I hope it lasts - I have a follow up appointment on Friday. Who knows, maybe this will be a wonderful thing to add to my regime! It's important to consider alternative treatments for healing and comfort.

Here is a picture of the acupuncture points- there are so many!!! 

be well. (watermelon)

Today my mom picked up some watermelon from the market and I am so excited. It is one of my favorite summertime foods! It is so beneficial for our bodies - it keeps us hydrated, provides us with a huge amount of vitamin c. It is also said to help people suffering from asthma, colon cancer and arthritis. It's packed full of antioxidants which help balance the free radicals in our bodies.  Free radicals increase inflammation and can impact things like arthritis, asthma, etc... Watermelon is also high in Lycopene which is known to help prevent cancer and it allows our cells to get the most amount of oxygen (we need a lot of oxygen for our cells). My favorite part of watermelon is that it's full of B vitamins which gives us energy!

Scientific name: Citrullis lanatus

A New Twist: Watermelon mixed with thinly sliced red onion, salt and black pepper makes a great summer salad!

chiro straightened me out

Went to the chiropractor and got a little relief. Thought you guys might enjoy this picture! He is using a tapper to help out with my headache.
(Photo Credit: Mama Bear)

why is this happening?

My Mom just got off the phone with the Immunologist who prescribed my IVIG treatments. We are going to take every precaution we can for the next treatment so hopefully this post treatment misery can be avoided. First we are going to slow down the rate of the infusion, and add IV fluids for increased hydration.  I am going to double my water intake the day before, the day of, and the day after.  I am going to take medications and supplements before, during, and after treatment to hopefully prevent another migraine or this miserable feeling (I swear I got in a car accident and didn't know it).  I still feel pretty lousy.

 

We are reading everything we can about PIDD and IVIG – I've probably gone so long without antibodies it will take time for my chronic state of infection to get under control with new antibodies.  I hope they're in there doing there job!

On my way to the Chiro now to get some relief? (fingers crossed)

(and laugh)

three days after

It's been three days since my first IVIG and things are still pretty blah. I am so achy and my headache  is still lingering. Ice and Advil have been helping.  I am taking massive amounts of calcium and magnesium – I want the pain to disappear.  I am supposed to take my first exam this week for one of my online classes and am not sure if I will be able to. bummed. I hope I start to feel signs of something positive – come on antibodies “do your magic”.  I'm also hoping to go to a wedding next Saturday – I hope I feel well enough to go. aye aye aye.

 

Feeling miserable…could use a laugh.

be well. (avocado)

 

Found by my friend (thank you Sambo) and thought it was adorable. Also avocados are one of my favorite foods and are wonderful for our bodies!!! Sometimes I use them instead of butter or I eat them mashed up with my eggs. Yummm. Hey, if you're really gutsy you'll ask me about my avocado smoothie- got my grandma to try it and she loves them!

thought this was cute.

Sometimes its little things like this that put a smile on my face.

My Rock (s)

Just wanted to take a minute to talk about how important support is when dealing with health issues. I am so lucky to have the people that I do because without their love and encouragement I'm not sure I would've survived this past year.  Last night when I was sitting at the hospital with my Mom and Sue, and receiving supportive texts from my best friends: Grace and Taylor, and my boyfriend: John- I had this emotional moment like I wanted to just bask in their love for eternity. I really think that getting through times like these are only possible when the people around you give you the love that you need. I am so very lucky. Just thought you should know.  And I hope if other people are going through things that you will be there for them or if you are in need then reach out! Don't be afraid to ask for love. 

life is amazing.

http://www.ustream.tv/decoraheagles

A family friend sent me this link – if you click on it and you can watch a family of eagles through a LIVE web cam. Keep your eyes open for the babies! Amazing.

(and laugh)

hehehe

(and laugh)

How I feel today....

IVIG side effects

My Mom called my Immunologist last night – I was sent directly to the ER.  I have never been in so much pain in my life. It felt like I was in a horrible car accident- even morphine couldn't cut the pain! We arrived at the ER and explained I was one day post my first ever IVIG.  Immediately, they started an IV of fluids and medications to try get the pain under control. They did a cat scan to look for a brain bleed but everything looked normal. After that we discussed a possible lumbar puncture (or a spinal tap) but I was not comforatble with doing that procedure. Since I had read so much about IVIG- I knew that these complications were most likely an intense side effect. I hadn't expected it to be that severe though! After a long night in the ER the fluids and heavy meds brought my pain level down a little and I was sent home. Thank goodness my family was there with me to keep me comfortable. I hope this goes away by tomorrow!! 

Day after IVIG (no laughs)

It's officially been 24 hours since I had my first IVIG and today has been rough. I slept well but woke up with a horrible headache that turned into a painful migraine. It was unbearable with all of the pressure in my head. Uhhh. Hoping that after tonight it will go away- Mom is on the phone with doctor now to see what to do.

(and laugh)

This woman in Thailand trained her frog to do this!! Who knew you could train a frog?

first IVIG & fan club

Today I had my first ever IVIG at my local hospital's infusion center. I was so nervous before-hand since I didn't know what to fully expect. As soon as we got there they took me back to my own room and got me "hooked up". The worst part of the whole day was when my veins decided not to cooperate. I nearly passed out from being poked so many times. 

Once the IV line was set – my new “liquid gold” called “Gamma Guard” arrived.  My IVIG fan club were ready to keep me entertained for the next 6  hours.  My boyfriend, John,  took charge of movies and games – we watched “Harry Potter” and played Gin ( I, of course, won.).  My Mom called it the official gathering of the “Gamma Guard Gin Club”.  My Mom and Susan packed a cooler with my SCD foods and kept me happy and fed through the whole thig.  Occasionally, my arm would burn and I felt a little funny – the nurses were great at helping me get through it.  They brought warm blankets to keep my arm relaxed because the fluid was pretty cold. One thing  I kept thinking about were the THOUSANDS of people who donated blood to make my IVIG – I have a new appreciation.  I am so anxious to see how I feel in the coming days, weeks, and months.  I almost can’t remember what it feels like to feel well but my hopes are high! 

Pictures from today:

 (Gamma Gaurd Girl)

           (Gamma Gaurd Gin Club)

(and laugh)

I always thought having a Twitter account would be a ridiculous but,  I just started one and I must say it provides me with a much needed daily dose of laughter. My favorite person to follow is Ellen - here is a great link she posted yesterday on her Twitter account – click to watch (and laugh). http://www.youtube.com/ellen#p/u/0/NyqAz5MILko

IVIG tomorrow!

For those of you who don’t know what PIDD is- it is an immune disease that stops your antibodies from producing properly. For me it has specifically affected my IgG antibodies which helps me fight off things like the flu, pneumonia and all of that fun stuff. As of now, there is no way to tell how or why this happened to my body but there is a way to replace the antibodies and that is through intravenous immunoglobulin. They actually take extracted antibodies from donated blood (from over 10,000 donors) and put them together in an IV so that I can put them into my blood. This has to be done about every three weeks (depends on the person) and I am having my first IV tomorrow. Ah! I’m so excited to see if it works and also incredibly nervous since the process is long and there can be some side-effects. Luckily I have a whole team of support that is going to be with  me tomorrow to make sure everything goes smoothly. I want to keep track of how I felt before, during and after so that other people can know what to expect or can consider this as a possible option.

Send me positive thoughts and wish me luck!!!

first of many

This is going to be the first post of many – as I plan on sharing my journey with you.

 

My life has been an incredible adventure.  I still have much of it to explore through – I'm here to tell you I am just happy to be here.  I am also here to tell you along my journey I have learned a lot.  I am a 21 year old college student, from Ohio, and my entire life I've battled chronic health issues.  As a child and in grade school chronic ear infections, sore throats, fevers, and GI (Gastro Intestinal) problems.  In middle school the infections increased, in high school they increased more, and in college things became chronic.  Visits to numerous Pediatricians, Family Physicians, and Specialist of every kind provided the same test and the same answers over and over.  I heard over and over, “you have a weak immune system (Translation: we have no idea) – but, here is an prescription for an antibiotic.”  It was a frustrating and hopeless cycle.

 

In my second year of college I got H1N1 and it was nearly catastrophic.  My health declined significantly from there and we knew things were only getting more serious.  In the days, weeks, and months to followed I have been to the edge and back with chronic infections (often daily).  Fevers, sore throats, fevers, GI problems, fevers, muscle inflammation, fevers, joint pain, fevers, thrush, fevers, brain fog, and did I mention fevers.  We traveled from the Cleveland Clinic to University of Michigan and my health forced me to do a medical withdraw from school (thankfully I could take some classes online).  My first real hopeful clue was with a diagnosis of Celiac Disease in 2010 – immediately I went “gluten free”.  Yet, the fevers, sore throats, muscle inflammation, joint pain, and thrush continued.  Next we were told to  remove my tonsils due to symptoms of PFAPA.  Yet, fevers, muscle inflammation, joint pain and thrush continued (the only thing that stopped was my chronic sore throats).  Then, to replace the sore throats, I started to develop lung infections and asthma type symptoms – I started using a nebulizer to keep my lungs clear.  Next up “gluten free” not cutting it – I had to go on the Specific Carbohydrate Diet (SCD) outlined in the amazing 1960’s book “Breaking The Vicious Cycle” by Elaine Gottschalk.  I was now eating gluten free, grain free, sugar free, and lactose free – and for the FIRST time I started to see progress with my digestive issues.  I had new hope.  Yet, days, weeks, and months passed and digestive improvement was it.  My fevers were daily, my muscle inflammation was daily, and fatigue was exhausting.  I was miserable – but, my family did not give up.  In January of 2011 an Immunologist discovered I do not produce certain antibodies needed to fight pneumonia and flu.  After further testing I was formerly diagnosed with PIDD.  I would need IV Immunoglobulin (IVIG) treatments every month for the rest of my life to give me the antibodies I need.  TOMORROW  I will receive my first IV IG treatment and in the days, weeks, months, and years to follow I will share my journey living with PIDD.  I have learned so many things in my journey but the two most important things I have learned - is never giving up in seeking answers (and laugh along the way).  So today I begin my blog…..

If you ever have a questions or comments just message me and I will do my best to answer.  Or if you just want to share something positive, funny, or nice- please feel free to email me!

(excited!!!)