Monday, April 7, 2014

New Addition to the Family


After many years of the kids wanting a puppy to call their own, it has come to be. Luke has crazy allergies and it has been a struggle for him to even be around the guinea pig "Cuggles" for for more than a few minutes without sneezing away.

Every once in a great while I find myself looking in the online classifieds at the puppies for sale. Well on Friday I found what I thought to be the one that Luke might be able to tolerate being around. Everything I read said that they were as hypoallergenic as any dog can be, not to mention wonderful family pets. Double Score!!

He is a Cavachon, which is a mix of a King Charles Cavalier and a Bichon Frise. I had never heard of this breed mix, but evidently they are all the rave in the designer dog world. I am so not designer anything! I am all about what is best for my family though. If you decide to look up cavachons you will find that they can be out of this world expensive. Like anywhere from $800-2500. Hahahahaha! I do not have that kind of money to spend on a pet. We only spent a small fraction of that.

There was no picture of the little fella and he was a couple of hours away. I am not sure what even made me pursue the ad other that a little nudging from above. I had many reservations about it, but I just felt that he was suppose to be with us. He was an older pup (5 months), had no potty training and was far away. Well I told the breeder (and I use that term loosely) I would take him sight unseen if he would meet me half way. He agreed and the rest is history.




This little guy is either going to cure me or kill me. I think it may be the latter of the two. He is so insanely cute and lovable though, it is worth it. Luke has been with him all weekend and he has not bothered his allergies one bit. Not one sneeze (caused by him). Hip Hip Hooray!

"Willy" is exactly what we were waiting for and he has taken to us as if we were meant to be his.




I hope we have many many years of love ahead of us!


Thursday, March 13, 2014

Banning the prefix Dys-


The predictability of routine. The certainty of control. The tidiness of outcomes. Ahhh, my comfort zone. Anything that starts with the pesky little letters "dys" does not fit my criteria of acceptable.

dys- = bad, difficult, disordered, abnormal, painful

See what I mean. It is just no good. Especially when it is referring to our bodily functions.

Back in my nursing days my biggest pet peeve was wishy washy doctors. I was okay with the nice ones and the rude ones, as long as they were consistent. Those Dr. Jeckel and Mr. Hyde ones killed me.  I pretty much feel that way about life in general. I like consistency.

It is incredibly difficult, bordering on impossible, to explain to people how dysautonomia affects me. Especially if it starts with, "I have POTS." The strange look and reply of "You have WHAT?" is sure to follow. I have this funny association in my head between the POTS and the piles. Both are a pain in the a**. One figuratively and one literally. (more of a family joke)

I think I should just start telling people to put dys (or one of it's meanings) in front of everything our bodies do and that pretty much covers Dysautonomia.

bad dizziness
difficult breathing
disordered thought process
abnormal -well everything
painful digestion

Yep! It works! The list could go on and on forever. Just try it. Pick anything.

I suppose the medical professionals have to have some Greek to throw around so that they can speak in code, as if no one should know what they are talking about.

dyspepsia- painful, difficult, or abnormal digestion
dyspnea- difficulty breathing
dysrhythmia- abnormal heart rhythm

Better yet, I will make a million copies of this to hand out like business cards. Covered! (kind of)



The biggest problem for me is the unpredictability of it all. Not that I want to have nausea all of the time, but it would be nice if there was some sort of pattern to it other than something in the universe is not aligned properly. I am cool with feeling dizzy when standing, but the random feeling that my chair has fallen out from under me while sitting is not cool.

The positive side of random = spontaneity, which I otherwise have none of in my life. I suppose if I look hard enough or babble on long enough, I can find some good in all of "dys".


Wednesday, March 12, 2014

Shortness of Breath ~ Dysautonomia


I am rather tired of this S.O.B. interrupting my life. I am referring to the shortness of breath, but the pun was totally intended. Enough already I say!

It never fails that my body decides to go wonky on Thursday, which happens to be the day my PCP is out of the office. Then Friday rolls around and I feel a bit better so I suck it up and reassure myself this will go away soon. You know how things can change minute to minute with these defunct nervous systems. Then I usually put it off and the weekend comes and I am either miserable waiting for the office to open on Monday or I am beyond whatever was initially ailing me and on to something completely different by then. You all know what I am talking about here, right?

Well this time I was not feeling better, but actually worse on Friday. I bit the bullet and called to see the doctor. It took me until after lunch to decide to call, but I was really not feeling like this was letting up. I know that I looked like the classic anxiety patient and I even told my doctor just that. When you come in looking shaky, short of breath, high heart rate and B/P and a mouth so lacking spit that you have to take a sip of water every couple sentences just to peel you tongue off of the roof of your mouth to speak, that is screaming anxiety. As a former nurse I totally realize that. As a person with a messed up autonomic nervous system (POTS) it means something totally different. I am not in a dark alley with a masked gunman, so can you stop this unnecessary adrenaline already. Enough is enough.

He reassures me that he knows that this is not just anxiety and that I am indeed sick and that we need to find some answers. What is causing this dysautonomia? We talked about some of the other things going on: lymph nodes, chest pains and the spinal cord issue. He then asks me if I have heard of sarcoidosis. Hmmm! (Not sure where this will end up.)

I left his office just as messed up as when I came. I huffed and puffed my way through a chest X-ray and lab tests and was sent on my way. He said they would call with the results on Monday. Well it is now Tuesday evening and I still have not heard anything. That must mean that everything came back normal or things are so bad that he is afraid to call me. Okay, that was not near as funny as intended.

It is a good thing that by Friday night I was feeling better. It felt like a switch was turned off and my body just slowed down like it was suppose to. No longer was my heart rate over 100 at rest and the other symptoms let up to my normal level of messed up. Whew ~ that was a long couple of days. I have learned to deal with feeling like dog doo when I am standing, but don't mess with my sitting also. Laying down 24/7 is not on my to-do list. That may sound like I think I am totally in control and I've got this. Not! I am completely humbled in knowing that I am so not in control and that Jesus is. I may fuss and not always like what is happening with my body, but I am so thankful and joyful for everything I do have in my life. Another thing that I am sure of is that Jesus has a sense of humor, just look at me! Humor is great medicine and I intend on using it to keep things real. Humor and sarcasm are close kin, right?

I don't get freaked out anymore about the dizziness, nausea, shakiness, weakness, pain, impending doom fatigue and all of the other junk I deal with, but I do not want to have to get used to being short of breath on any regular basis. It really stinks.

Hopefully I will get my results soon. Not that I expect any answers at this point. Actually it feels that I may never get any. I know that answers do not mean I will get better, but it may stop the doctors from poking ad prodding at me. Keepin' Hope Alive!




Thursday, February 20, 2014

Astigmatism and Connective Tissue Disease

"I just need my eye checked out. I do NOT wear glasses or contacts!"

These were the words I had to repeat 4 separate times during my conversations with the people at the optometrists office. I suppose it just seemed a no brainer that I had corrective lenses of some sort, since I was after all at an optometrist.

With all of the oddities going on with my body, I had put off my eye because I just get tired of seeing medical professionals of any sort. Well when I was inspecting my poor eyeball, I felt a hard little knot and thought maybe it was time to get it checked out. Not to mention the redness, burning and blurriness that was just not going away completely this time. 

After explaining my ongoing symptoms to the optometrist, she concluded that I needed an ophthalmologist because she did not have the necessary equipment to do the testing needed. Great! Here I was so proud of myself for actually going in the first place and now I am back to square one~ kind of.

So of course she says that she will give me my vision tests while I am there even though I have already told her that I see fine (other than the blurriness, discoloration and pain) and do NOT wear glasses. 

You see where this is headed don't you!?

After a kazillion "Does this look better or now"'s and blinding lights in my eyes, I was given the results of the unnecessary vision test. 

My eyeballs are evidently not the nice round things that they appear to be and are indeed shaped like footballs, with the right (my ailing one) being worse than the left. She also told me I have a d-r-y e-y-e. I just can't say that without dragging it out like on that commercial. I am not sure what exactly I thought the symptoms of dry eye might be, other than it being stuck open because there is not enough lubrication to blink easily, but I was sure I did not have d-r-y e-y-e. Of course the burning and redness could not be caused by that right.? Sometimes I amaze myself with my level of denial or shall we call just call it what it really is ~ stupid arse.

She gave me a sample of lubricating drops and against my better judgement I tried them. OMGoodness do those feel good on that burning little eye of mine. Score! 

Now the not so good news. 

Football shaped eyes = astigmatism = glasses

The relentless teasing I dish out to my husband about his readers and being elderly and how my eyes are just fine, blah, blah, blah... has come back to bite me right in the buns. I had to eat a bit of crow on this one. 



I suppose since our eyes are made of mostly connective tissue and mine just happens to be worthless, I should have expected as much. I have not yet made it to the actual eye doctor and will probably put that off until who knows when. I can't ever seem to see a doctor without having to get 10 more things done. Hmmm!




Thursday, January 9, 2014

Word of the Year 2014 ~ Enliven




I was searching for a word that was the opposite of ~ Mundane ~ and happened upon Enliven. To the average person that may not seem like such a lofty goal, but at this time for me it is hugely necessary.

Last year my word was Proactive. If I would have known the full extent of just how proactive I was going to have to be over the course of the year, I probably would have chose another word. No not really! Well maybe.

I have never seen myself as a very spontaneous, bubbly, life of the party kind of gal. More of a reserved, planner/organizer, control freak. You know the type, right. That was surely an advantage  when dealing with doctors, illness, and pouring over 100's of medical research papers covering various topics. I need to know everything I possibly can so I can be prepared and in control, don't you know.

Feeling like poop most of the time, with a decreased ability to do much of what I want, has lead me to a very mundane existence. I seriously need to add some spice to my life (besides the increased amount of salt I need for the POTS). I am determined to obliterate this mundaneness and Enliven my life.

I still may not be the life of the party, but I want to show up for the party.





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