Been gone....so long....

I haven't blogged for a very long time. To be honest it hasn't even been on my radar. There was a time when I would compose blog posts in my head while driving home or during really tedious inspections with trainees. That hasn't been the case lately.

After years of being sick a lot more than anyone I know an Immunologist diagnosed me with a type of Primary Immune Deficiency. Easy version: My body does not make antibodies like a normal healthy person makes antibodies. No real way of knowing why but it could be inherited or a mutation somewhere along the line.

My time has been spent dealing with a life changing illness and the issues that come along with a serious diagnosis. Between doctors appointments, a treatment every two weeks that takes almost 3 hours and is followed by several hours of me being useless before bed, my free time has been impacted. Additionally, learning how to listen to my body is taking a toll on my time as well. Why? When I feel good after treatment I am a whirl wind then later there is no energy to tap to do much else.  

I am not going to die from this any time soon. With treatment I will live to be a ripe old age. I must , however, take the time necessary to face this head on and make the necessary changes to keep me healthy without giving up on life. Somehow, I will find balance, I am not denying this any more and I am over the anger. I guess I am almost accepting that this is the new normal. Don't get me wrong I still hate like hell putting 4 needles in my legs every two weeks. I may never get used to infusing myself. Unfortunately, there is no choice.  

I am not pulling down the blog. It is being left up. If I ever get to that place again I may pick it back up.
Just not right now!
Peace, health and hugs!
Jo  

Words to go with the Cape below..

Yesterday while loading the photo of the cape that I finished I got sidetracked. Really sidetracked. Thus the photo of the completed project was posted before the words that went along with the photo were drafted.

In a couple weeks I will be traveling to Boise, Idaho for a national conference and with my Florida blood figured it might be a bit chilly for me that far North. After toying with the idea of a wrap for the cool weather then pricing them it became apparent an alternate plan was necessary. There are a couple of jackets that are lightweight and one really heavy wool coat in my closet but nothing a bit dressy that could be multi purpose. The items were all really casual, or in the case of the coat, designed for frozen tundra temperatures.

The pattern I used was Butterick B5819 and it was purchased on-sale online. Here is a link to the Butterick website with all of the pattern information. http://butterick.mccall.com/b5819-products-27967.php?page_id=872&search_control=display&list=search
The fabric is a blizzard fleece that was on-sale at Jo-Ann Fabric and there was a 25% off coupon applied to the price as well.  The clasp was the most expensive part of the project and it was $13.25 on Amazon. Everything else that went into the project was already in the ever growing stash of fabric and supplies. Most of the sewing was done by hand while sitting on the couch with documentaries playing on the T.V.Total cost right around $20.00.

The directions were confusing for me as I chose a fabric that really should be hemmed and the directions were for fabric that did not need to have seams finished, so I winged it. It forced me to do a few odd things in the construction and any experienced seamstress would be shaking their head in exasperation.

All in all I am quite pleased and hopefully it will get some use.

A Cozy Cape for a Chilly trip

Asthma with Bronchitis

This is what I have along with my morning coffee and pb smoothie to get me going. Visuals help some people understand more than words. It is hard to get the point across sometimes. So for all you visual readers, here you go!

On the plate we have 2 different types of steroid inhalers, albuterol for the nebulizer, prednisone, montelukast, Tessalon (for cough), Allegra and Rhinocort nasal spray. I accidentally left in the bp medicine. The steroids do jack up bp and I didn't have problems til recently. Notice 3 if the meds are allergy meds due to the asthma being "allergic asthma".

The cough medicine and the prednisone are temporary the others are daily. The albuterol is dependent on the asthma symptoms.

All of this is followed by a steaming hot bath or shower. After all that I usually am ok and functional- provided I don't have Bronchitis or an exacerbation.

So there is the morning! Hope everyone has a great day. Off to pick up groceries (don't have to get out of car ). Then back to couch. Happy Saturday!

The End of Radio Silence

My "Radio Silence" recently is due to a plethora of unexpected reasons. Work travel came first, followed by a wicked bout with bronchitis that morphed into pneumonia. All enough to keep me off the interwebs and mainly reading on the couch or watching really bad t.v. for last couple of weeks. Towards the end of my recovery my brain was beginning to melt from the medications and lack of intelligent stimulation. Then and only then, did it actually occur to my fevered brow that, "Hey, we have Roku and I can watch good t.v. from Amazon Prime...for free!" Then I started watching quality dramas interspersed with bad t.v.. What can I say the brain can take just so much high brow before it begins to lock up. Although if anyone asks me it was the codeine cough syrup, really, it was.

Today, I went to the doctor for a follow up and he basically told me pneumonia or not, my asthma is in the "severe" category and we now must take more drastic measures.  This is not an instance of a severe asthma attack but a specific type of asthma that affects my breathing a large portion of the time and causes me to have breathing difficulty even with an ongoing treatment regimen. It is not even worth listing the daily medications necessary to keep me functional; suffice to say there are more than a couple along with having a nebulizer for breathing treatments in my home. 

So I came home and ordered, yet another, air purifier for the living area. We already have a HEPA unit in the bedroom and a smaller one that gets moved around the house. Admittedly, I need to stay on top of changing bedding weekly and dusting regularly. Bedding tends to be washed every 2 weeks and aired out daily while dusting is less frequently. We have HEPA Vacuum, I just need to use it more often.

Can I say- this BITES! Yes- the big one! It sucks and there is not a lot I can do to make it better. Luckily, I am an odd bird who takes the medications as required and really tries to stay on top of the food allergies. Can I also say- this is FREAKING HARD!!!!!! I feel angry, helpless, frustrated and most of all misunderstood.  After all I look ok - until the asthma kicks in and knocks me flat. Coworkers don't see the bag of medicine I travel with, the nebulizer that ALWAYS gets bomb swabbed at airport security, the pains I take to get a hotel that doesn't allow pets, or the calls to make sure there are no down pillows on the bed. They don't see me at the front desk changing rooms for heavy dust build up in the room or even just mildew in the shower.  They don't understand how aftershave and perfume terrify me and that when they smoke and come back in the room that is enough to trigger an attack.    

Family remembers that I used to be able to run 5 miles at a pop and come back refreshed, hike for hours and have limitless energy. Spending hours in the garden was nothing and traveling was a joy.  It is different now. I am unable to walk more than a mile without losing my breath, whenever I travel I come home sick and sometimes I even need to come home early from trips. My quality of life is not as good as it was and  that is really hard to come to grips with at 47.

So now I am starting another round of specialists to determine what exactly can be done to help get me on the right track. I am not giving up. HELL- I AM TOO DAMN MAD TO GIVE UP! I want my life back!

Tomorrow is another day!
Jo 

Spending the day...

Since today is MLK Day the state did not require me to work. Fortunately, after a long week and a bit of family medical drama I had a day at home to recoup. My one and only granddaughter came over to keep me company while her little brother was napping. She is 6 and full of questions as well as energy and she is adored by her grandmother- me!

We got to spend the afternoon talking , drinking hot cocoa, sewing and taking a run around the block. What is it about the unmitigated candor of a 6 year old that is simple, refreshing and oh, so earnest?  She shared her concerns about a new baby coming into the family, laughed about her little brother and was ever so solemn about her friends at school. If I could live like that every day- Sigh. She is always present in the moment and notices things that we adults seem to ignore or take for granted. Having her or her brother around forces me to stop and appreciate the things I might normally miss, like a butterfly shaped cloud or the joy of a small child running as fast as she can.

There was time when I would try to do housework, or laundry while the kids were here and I was never quite content, the kids would get grumpy and after they would leave I was exhausted. It took me a bit to figure out that the laundry will wait and that the kids really do benefit from my undivided attention. If something absolutely has to get done keeping them involved is crucial. Today, however, the laundry waited as did working on a to do list 12 items long while we both  played, swapped funny stories and jogged around the neighborhood. The best part is I am relaxed, happy and ever so grateful for the little ones that share my life. the words are really trite, but the sentiment is apt, "LIFE IS GOOD!"