Wednesday, May 27, 2015

A Diagnosis

So I haven't updated you all on my hives situation.  It got worse, which turned out to be a good thing.  As long as the hives looked like normal hives, the doctors kept putting me on prednisone waiting for it to clear up. 

Then the hives returned even while I was on the prednisone, and turned into these beauties that were bleeding under the skin.  I can't describe how painful they were.  They were hot, they burned, they were swollen, and it hurt to have my clothes touch them.  At first I wondered if they were shingles, because I had chicken pox when I was a kid, but they weren't.  I drove over to my doctor's office while they looked like this, demanding something be done.  I was ready to check into a hospital.  I didn't know what to do and clearly, the steroids weren't working and the doctors didn't know what they were. 

They got me in with an allergist who also specialized in immunology.  This was my lucky break.  When the doctors at this new office saw my hives, they said, "those are not ordinary hives."  To which I replied, "of course they're not, I'm special."  Good thing my humor hadn't left me yet.

The doctor then began to pepper me with non-stop questions on when they started, their changing character, any medications I'd been taking, known allergens, foods I'd been eating, etc.  He clearly had seen these before, and was just trying to narrow down which illness I had.  He said he narrowed it down to four different auto-immune disorders, but wanted a biopsy of one of the hives to verify what it was.

So a hole in my leg and a week later and they had the results.  I have 
Leukocytoclastic vasculitis

They think it might have been triggered by the statins I was taking for my cholesterol, since the hives developed four days after I began taking them.  Leukocytoclastic vasculitis is a very rare side effect of the particular statin I was on.  I found an NIH study on people who developed this disorder while taking statins.  Most people improved a couple of weeks after being off the statins.  Then there was another group that took 6 months to 2 years to get completely better.  Clearly I'm not in the first group. 

Since my immune system is still going nuts, thinking it's under attack, I have to go on immuno-suppressant drugs to calm it down.  I also have to have blood tests every two weeks like clockwork to verify that the drugs they have me on aren't harming my kidneys or liver, and to also verify that the leukocytoclastic vasculitis hasn't progressed to my internal organs, because that could kill me. 

It's such a weird thing to not feel sick, yet know I have something that could be deadly.  It doesn't feel real.  I feel fine.  So far the hives haven't come back, and I'm not noticing any side effects of the new medicine, well besides getting hot and flushed on occasion. 

So, now with the diagnosis in hand, and knowing I'm moving, they had to transfer my case to another immunologist in Buffalo when I move, all while continuing the bloodwork every two weeks.  So I spent the better part of one day, faxing medical records and giving background information to the new doctor's office in Buffalo, then did the same thing with a lab up there to continue my blood tests, also scheduled tests for while I'm still in Maryland, and because I can never have anything be simple and normal, I also had to find a lab in Maine, where I'll be on vacation for ten days in July, to do blood tests.  Everything is now in order, all the labs know when to expect me and who to send the results to.  Organization is a good thing.  :-)

Monday, May 25, 2015

Remembrance

I have put pictures of headstones of my mother's side of the family who have served in war on my blog in the past.  This time, I will put pictures from my father's side of the family.











Friday, May 22, 2015

New House

Well we did it. We sold our current house and put a contract on a new house near Buffalo. It's not a grand "old" house like we would have liked, but it's a nice house.


We honestly couldn't afford any of the older homes near campus (starting around a half-million). It's a sellers' market in Buffalo right now and a not only did we have to deal with a brisk market, and higher prices, but we also had to find a house with a first floor master suite because M's parents will be living with us eventually, and it's really hard to find a first-floor master suite in a 100 year old house.  Apparently living "in town" is the thing in Buffalo.  They said it started about 5 years ago, people began buying up the older houses and remodeling them.  I must say, the neighborhoods are gorgeous!  I've never seen a city with so many older houses that are so well-kept.  People there have discovered what we did 10 years ago, it's wonderful to be able to walk to work, school, stores, and events. 



So we spent last Friday and Saturday looking at countless houses that we had looked at on-line over the past couple of weeks. Unfortunately, a lot of these houses looked good on-line, only to discover they were a mess in person. A number of the houses were not well maintained, they had peeling paint, water stains and leaks, trees growing in gutters, and who know what else that we couldn't see. A lot of the houses were horribly over-priced. A number of the houses were so outdated and hideously ugly that it would take tens of thousands to update everything. Three houses were sold within 24 hours of making an appointment to see them and then showing up for the appointment. One owner had an appointment to show us his house, but when we got there, he insisted the appointment was for Sunday, not Saturday and wouldn't let us see it. So it really came down to this last house.

Nothing else would work for us. We were pleasantly surprised that other than painting in a couple of rooms, we could live with everything else until we could afford to make other changes. Eventually we will want to rip out all the carpets and put in hardwood floors, plus the bathrooms are all outdated and we will have to do that as well.


This last house was scheduled for an open house on Sunday, and we saw it on Saturday. We knew we had to put an offer in right away or risk losing it. So we offered below the asking price. Our realtor wasn't happy about that. She thought we should offer his asking price because she was certain there would be a bidding war and the house was worth what he was asking. We didn't want to pay as much as he was asking. As it turned out, the owner had already moved to California and was eager just to sell the house and be done with it, so he accepted our offer. Now we're awaiting the inspection on the house, and if everything checks out, we will close on this new house on July 1st. It's starting to feel real now. I've got so much to clean out of our current house before we move. I also went on two job interviews while we were there. Ugh, starting a new job is stressful too. No job offers yet, but at least the housing situation is moving forward.

Monday, May 18, 2015

My baby at the circus



Well, she's doing it! Min is on the road with Zippo's Circus, doing their summer festival circuit, I believe. She's learning a lot, trying to conquer severe homesickness and learning new things.



So far it seems that besides homesickness, putting up the tent has been the hardest job. The first time they attempted it, there were high winds and they ended up ripping the tent. Yikes! Now it seems they have it under control.

 

Min and the other students are now regularly performing daily to crowds of 500 each show.



They each have a bunk in the long circus truck which is their home away from home. We were worried she would pack it in before she even got started because she missed home so much. Luckily a package from her boyfriend, and then one from me and she seems to be doing better. I sent her a SIM card so she now has unlimited talk, text, and data with everyone back home, so she doesn't feel so isolated.



 I haven't heard what all the other acts are in the circus, other than Min said there was a young man there (another student) from Mexico and was the most amazing juggler she'd ever seen. There is another girl there from France polishing her act before auditioning for a circus in France.




Here's a video of Min doing a lyra act. The hoop is way too big for her, they're trying to find a smaller one, and she filmed it at the end of the day after doing a number of shows earlier. I'm not sure if the video will work. The link seems to be taking you to her Facebook page, then you have to scroll down to see it. I don't know if you'll be able to see it.
When she posted it for us she said, "sorry I'm a little tired in it, filmed after 6 shows the other day." So she's definitely getting a workout.
Min at Zippo's

Tuesday, May 5, 2015

Tying up loose ends

In preparation for our move this summer, we still have to go through the procedures of selling the house. That means, even though we have a buyer, we still need to have an appraisal done of the property and an inspection. This means any items still on our "to do" list, that an inspector or appraiser might object to, we have to correct before they come through. 

This entailed getting a new roof on the garage.  Luckily that was already on my summer to do list and had a guy scheduled to do it even before we knew we would be moving.  He got it done in two days.  This would have been a good opportunity for me to learn a new skill, but I honestly didn't have the time.  I took pictures through the window because the dog would flip out if he saw them or if I went out there while they were working.  



Next I needed to power wash the garage and deck, so I could paint and reseal them.  We couldn't have any peeling paint on the property before the inspection.  Once again, this was on my summer to do list, it just got moved up by a couple months.  




As you can see, M put the first coat of paint on the garage, and J, who will be buying the house came over to help.  In addition to the paint, I put trim around the bottom of the garage.  



Also on the to do list was to replace the cracked, non-functioning basement windows.  J also did this repair and I tried to assist where I could.  




Are you exhausted yet?  We also began landscaping and re-doing the side yard.  This entailed digging up overgrown shrubs from the ornamental garden we started years ago, and moving the now mature plants to a bed up next to the house.  After the removal of those bushes, plus buying and planting a couple more, we also needed to plant young plants back in the ornamental garden to replace what we'd dug up.  I spent days digging up and sawing off old roots, and was properly sore for days afterwards.  I also finally installed window boxes to add more visual interest to the side of the house.





The other project I'd been wanting to try, was to build a brick path in front of the basement door on the side of the house.  I dug out, covered, sanded, and leveled, then had to rush the finish because a storm was moving in.  So after all that work, I have an uneven rise in the walk and will needed to go back and level it.  





We also had to begin cleaning up the yard waste piles scattered around the property, hauling stuff to the dump, and cleaning up the inside of the house.  Once the inspection is done I can begin the task of going through the house and purging things we don't need to move with us.  I'm not looking forward to all that.  So this is why I haven't been posting for a while.






Wednesday, April 29, 2015

Fly little bird, fly

She did it!  My baby left the country.  She ran off to join the circus. ;-)  she's going to apprentice with Zippo's Circus, through their Academy of Circus Arts.

She left here Tuesday and had a ten hour layover in Iceland, on her way to England.  While in Iceland, she visited the Blue Lagoon Thermal Spa.  I would love to go there.  CK, check out Zippo's schedule and let me know if my daughter will be in a town near you.





http://zippos.co.uk/wp/


Tuesday, April 28, 2015

*sigh* Will this ever end?

have been good, recently.  I did fall off the wagon.  I did go back to eating wheat and dairy, and when I developed hives, I did stop again, thinking maybe there was some connection.  When my stopping the wheat and dairy didn't seem to make any difference to the hives, I went back to eating it, until the doctor ordered me off it again.  She thought maybe my allergy had turned to celiac disease.  The blood test came back negative, but I still need a biopsy to absolutely confirm I haven't developed it.  In the mean time, the hives were still present, and the severe indigestion was there as well.  I've been on multiple prescriptions to get all this to stop.  Finally over the weekend, the hives started to disappear, the stomach problems improved.  I thought I'd turned a corner.  So when Monday around 3 p.m. when I started to get severe indigestion, I was confused.  The stomach pains only ever came when the hives were present, and they were just about gone.  I began popping Tums and Nexium to no avail.  In between bouts of pain, I went out to dinner for a family member's birthday.  At dinner I was careful to only order from their gluten-free menu.  So an hour after dinner, when I was home, not only did the stomach pain return, but my lower lip started to feel funny.  It started feeling hot and tight.  Below are two pictures.  The first is what my lower lip usually looks like, the second was what my lip looked like when I first noticed something was happening.  I had been taking pictures whenever I had hives so my doctor could see what they looked like, because sometimes when I went to the doctor, they cleared up.




Very quickly my lower lip swelled, then my face got red and my cheeks began to swell.  I put ice on my lip or about 20 minutes, but it didn't help.  M convinced me to go to a doctor.  The mini-clinic didn't look open, so we went to the regular hospital emergency room.  As I was walking in the ER, I could feel the swelling spreading up toward my eyes.  When I walked into the ER and tried to say "I think I'm having an allergic reaction, but I don't know why," my voice sounded funny, because apparently my lips couldn't move to enunciate the words properly.  She understood me enough to get me into a room and seen immediately.  As they started an I.V. on me, my throat began to feel clogged.  I kept clearing my throat, not even realizing it was likely swelling shut too.  I was incredibly calm and even dozed for a bit while the drugs began filling my body.  They ran all sorts of tests, but couldn't find anything to indicate what I was reacting to.  The next morning I went to pick up new meds, and my first ever Epi-pen.  I also went to see my regular doctor.  She thinks I might have some sort of auto-immune disorder.  She's referring me to another doctor, plus I'll need to get scoped to see if I have ulcers.  All this while school, repairs, and preparations for moving have to occur.