It's been awhile

Hello Everyone,

I realize that it's been awhile since I've posted on here. There's been a lot going on since my last posting on me passing my exam.

In September I went down to Milwaukee to visit my best friend, it was a blast! I can't wait to go back there and revisit her as well revisit some places that we went to or didn't go to again. I think the next trip will be for our epic final movie of Fifty Shades of Gray. Yes we do like the movie, more so we like Jamie Dornan. We really can't wait to see the final installment.

Shortly after that my cat Buddy had been not eating a whole lot, it was starting to get worrisome and then we realizes how bad it was. We were trying to give him medicine to make him better and to get eating again, but he was the definition of a sumo wrestler when trying to administer medicine to him.

Sadly Buddy passed away on October 4th, he passed in his home which is ultimately what we wanted and what I wanted when he wasn't really getting better and a few trips to the vet. Buddy was 16.5 years old, he practically grew up with me even though he had more humans years on me. My family misses him dearly and things at home weren't right.

But we did bring in a kitten back into the household and we're currently seeking for number two. It's a lot harder than I would have like to find number two. We're getting a lot of setbacks and with my schedule at work being so constant that it makes it even harder.

As far as health goes, I've been pretty healthy even though I had lost my baby boy. I had a six month visit with my immunologist. The appointment went really well and he actually had a student resident studying hematology and something else sitting in the appointment with me. The student certainly probably thought I was the most unique person he's ever met.

My immunologist was kind of going over all my past diagnoses and such with him, then because he didn't have an appointment until much later. My immunologist wanted to revisit my old file (I'm thinking that it's the big big binder he had back when I first started seeing him), he wanted to look at something but also just to reflect on just how much I have overcome in my life.

I've been very busy at work, so I don't often have a lot of down time unless it's at home after I come home from work. It's only going to get busier these next couple days because we're the only real grocery store and thanksgiving is around the corner.

I have my next infusion on Black Friday (which is fine because I don't dare go out for Black Friday Shopping). I'm taking the entire thanksgiving weekend off because of family thanksgiving, infusion, getting a tree and then have a lazy day.

So who have started their Christmas shopping or Christmas list? I've done a little bit of both.

Making the Leap

Today I took the longest exam of my life, the most important exam of my life and now . . .

I can breath a sigh of relief, I have pass my exam and I am now a certified Registered Health Information Technician.

I can't wait to see where my degrees in Health Information Technology and Business will take me. Now I'll be job hunting and enjoying my first year of not being having to be in school this fall.

It took me 8 years to achieve two degrees . . . 

Yes it may have taken me 8 years, but I also went through different degrees phases in two of those years. One year of those 8 years, I put my focus on one or two classes while I figure out what I really wanted to do after one degree fell through and being on a waiting list to try and pursue a different degree. 

I will still say this, my second degree really should have been Health Care Administrative but the college I went to didn't click with me so I have put it on the back burner. I hope that one day I'll find a way to obtain that degree, it still a dream of mine but I'll have to find another direction to achieve it. 

While at my association conference in La Crosse, I have discovered another program . . . another degree that might be worth while pursuing but I told myself, my teachers and my classmates that I wanted to focus on other things before diving back into school again. I want to enjoy the freedom of not having to worry about homework and exams and see where my degrees takes me. 

So in other words . . . 

Hats Off!!!!!

I am so glad to be at this point. So much has happen in the past two months and after two years of being in my Health Information program, I am ready to graduate. 

I had some ups and downs during the course of the program and so did the rest of the class. We gain a lot from our program and are ready to take on the world.

I am excited to venture off to finding a career in my field, and start spreading my wings. 

One of the first step I have to take is my certification exam, my goal is to take it in July that way I have a whole month and a half to study for it and prepare myself for it. I'm super nervous about this exam but I know if I stick to my study plan I will achieve in passing the exam. 

The next step is to find a job and I'll need to start practicing job hunting like a hunter hunting for its prey. My resume may not be up to par, but hopefully someone will take a chance. I already have a associated business degree and now with the addition of Health Information Management Technology Associated degree, I shall shine.  

I am going to miss everyone, but we will stay in contact with one another. I will miss walking across the bridge to my classes. My Tech college is a place where I've spent 6 years of education, I went through two different program before I arrive at Health Information Management Technology as my second full degree. 

Future education???? It's may be possible but it is not in the plan right now, I'm ready to start doing more Life experiences like Job, Dating, Marriage, and perhaps Kids. When I was at my association conference I learned about Cancer Information Management, that program really sounds interesting and intriguing and there's a BIG PLUS . . . . It's all online, I can earn the associate's degree online.  But right now I'm not going to be currently pursuing it because of wanting to do more LIFE things and not STUDENT things. 

There's a long road ahead of me, a lot of adventures and challenges. I can't wait to see where the road leads me. 

 

National Rare Disease Day

How many people do you know that has a rare disease?

How many Rare disease do you have?

Is your Rare disease Genetic?

National Rare Disease day is a day to bring awareness to Rare Disease that affects more than  Million people Worldwide.

Having a Rare disease can be a challenge, living with the unknown of the disease. It leads you to wonder about your quality of life and health status, how does it affect your family, how does it affect you.

For me I don't chose to live in the unknown of my disease, I chose to thrive with the disease. Diagnosed at aged 5 with Common Variable Immune Deficiency, however I also have other rare diseases that pushes me out of the circle of CVID.

I also have Evans Syndrome and Severe Hemolytic Anemia, both of which are very rare that there's no real statistic to how many are affected by these diseases.

As of right now, my diseases are not caused by genetics but with the advancement of modern technology and the evolution of the Genome project that my genetics can be pinpointed. Neither of my parents were carriers of any sorts and we had an genetic counseling when I was much younger than 5 because I kept getting sick.

I've pretty much live with these rare diseases my whole life, and I've had my ups and downs with these diseases. However I do therapy called Immunoglobulin Therapy, other terms that is used to represent my Therapy is IVIG or Infusion. I have been doing my infusions since 1999 and is done every 21 days.

Without this IVIG, I'd probably would not be here today or would be as healthy as I am today. I am considered to be an Healthy ZEBRA. Healthy Zebras are able to go out and do things like a normal person.

Now yes I said IV(Intravenous) however my route of getting my IVIG is through my Port-a-Cath that was placed in 2000. Believe it or not I still have that very same port.

YES you read that right, I still have the same port, this port is 16 years old and working great. Sure it had a little downfall last summer 2016 but that was resolved using TPA.

This blog is basically an insight on how I live with my Rare Disease(s), although it has some ups and downs. Living with this has become my lifestyle and I don't think I could ever imagine living without it. ALTHOUGH YES Cure(s) is a great thing but then does that change who you are or who you were with the disease?

I would love to have my IVIG be spread out longer in the year rather than have 13-15 infusions a year. There's research on trying to make our way of life better and not have to do frequent IVIG or Sub-Q which is a new route for many people.
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Looking back 2016

Well 2016 has come to the end, I don't know how many of you do an reflection of your year. I do but most times they're just private thoughts kind of thing. This year I feel there's a lot to reflect back on and talk about my year in general.

Sadly I lost my only grandpa, just a week before Christmas. It's so different knowing that he's not here anymore but I know he's not suffering and is smiling down at us. It been hard on both me and my mom, she took it more harder because it was her dad and all my aunts (her siblings) were dealing with that same thing. One of the things while arranging the funeral, is that everyone had use the picture I took of grandpa in October at my cousin's wedding and honestly looking at those pictures I took, just reminds me that he wasn't sick and he was smiling.

I saw him the day after Thanksgiving, after my dad and I got our Christmas tree. I'm glad that I have good memories, the smiling memories of him rather than what my grandma and my mom and her sisters have seen as he started declining. I love you grandpa and I will miss you.

School
I can't believe I only have one semester to go for my program, I have to say I'm so glad to be finally done with school. I told myself a long time ago (probably when I started college in 2009) that I would be done with school by the time I'm 26. Well I'm turning 26 at the end of this year and I'm meeting that goal.

Work
Yes I officially have my first job, it's an tasking job with a lot of physicality that make it's pretty challenging. It's nice to have one at the same time, I know once I'm done with my program I will be seeking out another job with my degree.

Health

Aside from my whole port mishaps, it's behaving pretty well. Although I know it will come to a certain point in time that I'll need to replace it for good. My mom's insurance went back into network with my hospital but right now currently I'm still at the new site, I still have mix feelings only because sacred heart has been my second home for 17 years. I'm still debating on changing doctors, I can say this . . .  Somehow when you get older you get a little bit more indecisive and that is usually where it stops me because I can't make up my mind. I worry about the domino effect (I think) or that my decision was a bad one but there's no one to tell me if my decision is bad or not. It all has to be my choice. 

Life 

I think the year 2017 is time to start dating, start having a relationship but I honestly have no idea where to look for that. I'm considering match.com just to give it a whirl but I need to ask some people that have done it and has experiences with it whether it's bad or just meh. Should I ask myself if I'm ready for a relationship? I think I am, I mean I'm going to be 26 and most people I know are with someone so I kind feel like the only single person. Even my whole class which are females are with someone. 

I'm also thinking of pushing myself to lose weight, I mean I don't have a issue with my weight but it's there and I'd be so much better off with shedding some pounds. Learning how to eat right is part of the challenge although I have no problem eating vegetables and fruits, it's my self control on Junk food. If I can limit how much potatoes chips I eat or how often I go to a fast food that my weight will be better and my a1c will be better. 

Updates on Port

Well yesterday I did my walk-in to the ER, amazingly that time just kind of flew by between having the PA check me out, to a nurse that access me without a hitch and having an radiology nurse come down to check me.

When I got access and check for blood return, there was very little . . . There was slow movement with the blood, almost like clumps from my dad's point of view. For me I just really couldn't look because all I could see was bad news and not much else.

When the radiology nurse came and tried it, the blood return still was the same so we went on down to Radiology Intervention and did TPA. So as we waited anxiously for 30 mintues to come, when the time did we still were having issues with blood return. It got better but not like it should be.

So we went ahead and did the dye test, overall the port is working fine but there may be either a clot or fibrin sheath that is causing all the problems. It's like for example I don't feel any discomfort when getting a flush when my head is turn away but I feel a little discomfort when my head is turn facing forward.

We did another round of TPA and waited 2 hours, during those two hours my dad and I went to say hi to some old friends on short stay and then headed out to eat at Wendy's then stop by shopko since it's right next door.

We return back and the blood return was again a little hesitant but if might be due to the nurse didn't do an flush first then check for blood return. So can I say that the second round works? That I'm not sure but even after the dye the Radiologist that read my dye test said that there's nothing that would indicate a problem or no reason why I can't keep using the port.

So in other words, we won't know how things goes with the port until my next infusion which is next Friday. You can say that my nerves and being anxious grows on my mind as my infusion day comes closer.

I wish that somehow that there were more definite answers to reasons why I was having issues but again if it is fibrin sheath which most likely is, that there's really no way to dissolve it if it's on top of my port and not within the port itself.

My dad did some research on the new and improved ports nowadays, I think if we need to change out the port I will get a new one. After just talking with my parents and talking with a lot of people from the CVID facebook group that I would hate to start having problems and reactions/side effects after going for 17 years without them. 

But at least one thing came out of this little trip to the ER, I did get heparin after not being able to get it at my last infusion.

Prayers

June 17th, Need some prayers in these next few days, three weeks ago there were issues getting me access however I did get access and had my IVIG. But yesterday, none of the nurses could get me access as they each felt resistant and the needle wasn't going through like it usually does. Monday my dad will be spending most of his day making phone calls to the doc that put my port in 15 years ago, and to my primary physician since he was not working yesterday (FYI almost no docs works on Fridays apparently) 

I've managed to get a hold of my immunologist yesterday after my dad called the triage nurse who doesn't know the difference between it being an urgent call or something else. I actually call the receptionist where you make appointment and told the women about the urgency that he needed to call me ASAP. 

My dad and I talked with my immunologist, and the reality of the port is that maybe it's just time to have it out. It gave me 15 years and 7 months, weirdly enough I'm not getting an biological signs like a lot of people do. It's really all Mechanical from this point, there's no redness, nothing that my skin is showing signs of an issue. 

So I'm kind of thinking and as a family decision, that the Port is going to have to come out rather than potentially fixing it. We are going to try and get an ultrasound scheduled to see if we can see what's going on because we won't be able to do an dye test because of the issues with the port. 

So what's my next options? My immunologist suggested Sub-Q but with the amount of grams I get that it would be near impossible to do plus I could get more of a reaction and/or reaction Plural with Sub-Q than how things are now with doing it every three weeks for four and a half hours. 

So yesturday how it went with me getting my infusion is that the wonderful nurse name Shelly, who actually used to work for Red Cross looks at my arm and saw some pretty good veins. So she prep me and I got my stuff via antecubital vein. 

So the odds are that my next infusion, it will be another IV in the arms or hand if I can, we will be looking into PICC but for right now I think we'll do the regular IV method. 

As of June 21st, there hadn't been much set in motion about getting an ultrasound or anything done. I will share details when I can.