A--Z Challenge for June

Z is for Zyrtec!!!!!

Allergist was today. I can go back on Zyrtec. Have already taken it. Yeah, I will be able to breathe again.

Good report. Lung function is good. Has ordered a generic Flonase for backup and my Avi Q epi pens. Pharmacy called while I was on the way home. Meds won't be in until tomorrow. Of course, Heaven forbid my docs would order anything they keep in stock. LOL.

Z is also for zip. As this is the end of my A-Z Challenge. I'm thinking of doing another in Sept. Between now and then I will be doing my usual ramblings.

Many thanks to those who've been keeping up with the start of my journey. I appreciate your well wishes.

TTFN

A-Z Challenge for June

Y is for yesterday.

I felt so much better yesterday after I finally got some sleep. I did well most of today. Then without warning I had dry heaves, I'd rather just be sick and get it done. I'm thinking this is a reaction to the Glucovance for my diabetes. I'm hoping my body will adjust to it soon. Dinner might not happen tonight. Need to get the stomach settled first.

Will not make it to Bible study, which makes me mad. I was looking forward to it. We always have good discussions.

So, I am longing for a day more like yesterday and to keep those days consistant.

TTFN

A-Z Challenge for June

I'm taking poetic license to say X is for Xhausted.

Part of the exhaustion is my blood sugars being too high. We are working on those. Some of it is due to my body still acclimating to the heat, this, too shall pass. Yet some is due to the lupus. There are days when I just don't want to get out of bed because moving requires the use of muscles and I have no energy.

I am not going to succumb to exhaustion. I'm going to push through it. Some days, I may push slower than others. I am not ready for spending the rest of my life lying around. I have way too much to get done.

Today I made a sign to put outside my door. I'm tired of people being worried about me.

Now, no one will have to worry about me. I'll just hang it outside every morning.

TTFN

A-Z Challenge for June

W is for wondering.

I'm wondering what next? Thyroid is showing signs of acting up. The one thing I've always tested negative on is thyroid.

Wondering how to find old doctor's records. Will be starting with the Mayo Clinic as they ran some labs on me. Labs were drawn at Burns Clinic which is no longer there. Also trying to hunt up my first doctor in West Branch to see where I might find his records. I have a fax number for them to fax records to my new doctor. Wondering if we can nail this down?

Wondering if there will be more questions? Suspect the answer is yes.

Then there is just my every day, every moment wondering. But, at least I no longer feel crazy. So, you all can stop wondering about that.

TTFN

A-Z Challenge for June

V is for viscious.

Lupus is a viscious cycle. It has the power to attack any organ at any time. You can treat one organ and be well for a while. Until lupus rears its ugly head and finds another one. The problem is you don't know in advance what organ is going to be next.

While lupus is viscious, I intend to be victorious. I'm going to battle this beast head on. Everyone knows how stubborn I can be. I'm just going to dig my heals in and pull until I have lupus over a barrel.

Cheerleaders positions are waiting to be filled.

TTFN

A-Z Challenge for June

U is for unique.

Symptoms of lupus are unique to each person. There is no pattern. Some things can happen in all lupus patients, but not necessarily at the same time. And they symptoms mimic other diseases, making it harder to diagnose. It mimics fibromyalgia for one. The person with lupus can be suffering great pain, with no determined cause.

Because all symptoms are unique, all treatment is unique. Some people with lupus take the same drugs. Others take different drugs. It all depends on what your symptoms are and how you react to the medications.

Some lupus patients reject the meds given, which is another uniqueness. Others tolerate the meds well.

We shall see which one I am going to be.

TTFN

A-Z Challenge for June

T is for tenacity.

Something I have in spades. I will be the one hanging in there until the final strand in the rope breaks. then I will crash and burn. But I'll hang in there.

I am tenacious to the point of extreme. I don't give up even when everyone is saying, "Let go!" Nope, not me. I am the champion of lost causes to the bitter end.

So battling lupus means the disease has met its match. It doesn't stand a chance. I'm working on learning all I can about the disease. I'm going to work with my medical team to find the best treatment options for me and above all I'm holding onto a big thick rope for all it's worth. I'll let you know when the first line breaks, but don't expect it to be anytime soon.

TTFN

A-Z Challenge for June

S is for scratchy.

Which is how the back of my throat feels. Since I also have an ear canal feeling plugged, I don't know if it is sinuses or if I've picked up a virus.

Right now I'm going to find my blankie, take my scratchy throat, and snuggle into my bed.
Night all.

TTFN

A-Z Challenge for June

R is for research.

I'm starting here:

Funny to learn you have a disease people have known about since 855 AD. Yet, we are still no farther ahead in getting a diagnosis. Lupus is the Latin word for "wolf" I knew I'd get your attention telling you. However it does not mean I am a wolf. It means my body is devouring itself. Lupus is described as the disease which not only ate the flesh but also the internal matter. 

Now if it isn't enough to ponder, there are different forms of lupus. Unfortunately for doctors, it reacts differently in different people, which is why it's hard to diagnose. 

All those little tabs on the book are telling me which chapters I need to focus on first, then I can go back and read other chapters which might be of interest or relevance to me. 

My siblings and my daughter are going to get sick of me sending them little tidbits about what it going on with me. None of them are afflicted with it. No surprise there. If anyone is going to get something out of the ordinary, it will be me. 

So, while you are relaxing at the beach, I'm going to be indoors reading. I have been told sunlight is not good for me...maybe there is a little wolf in me after all...werewolf?

TTFN

A-Z Challenge for June

Q is for questions.

I have more questions than answers right now. Why was this not diagnosed years ago? Why did so many doctors miss it?

I want to believe the first dermatologist suspected and didn't want to put me through what it would take to find out. I also was way younger than the average person to get it. The age range is 14-44 and I was only ten. Why did no one connect my cold hand's and feet with Raynaud's Syndrome before I was in my late 20s? Why didn't someone check when I had mono in high school? Why when I tested positive for an autoimmune disease in 1993 did they only test for HIV?

All this goes through my head while I wait for the ology appointments to come. The first one is next Thursday. I'm also not the most patient person in the world. I want my ologists to all play nice with each other so we are all on the same page.

I'm not sure how to ask my questions when I do finally meet my new ology team. I know I meet them one at a time. I know I have questions for each and every one of them. I just have to get the questions right. The only ologist I'm waiting on is the most important one, the rheumatologist who deals directly with the lupus. Once the appointment is set with her, I know I'll be better. No, I'm not expecting miracles, I'm expecting answers. I want options. While I really don't want more meds, I do know they are probably in my future.

So, I'm in question mode for now.

TTFN

A-Z Challenge for June

P is for progress.

I now have my allergist appointment set. Still waiting on dermatologist and rheumatologist. Had a rheumatologist appointment, however we are changing the rheumatologist.

Also in case you missed the Facebook memo. My book came today so I can begin seriously studying about lupus.

I am excited about delving into it, however I want to finish the book on relaxation. Then I'll get into it. 

While yesterday was a no energy day, today was better. (If you consider I slept half of it away.) I got a book returned to the library, some grocery shopping done, and took myself to dinner. All in all not a bad day.

TTFN