A Long Week

Today was the end of my 9th week at home...this was by far the most difficult week I've had yet. I have tried to keep a stiff upper lip and a positive attitude, but I am so tired.

I saw my rheumatologist this week which was good. I went in with a long list of questions and concerns which he addressed one by one. The ongoing, relentless fatigue - he is scheduling me for a sleep study. He thinks it may be likely that I have sleep apnea. It wouldn't surprise me. I have always been a very shallow breather. So, this study may be scheduled by the end of next week. Let's hope. I may get to be one of those people who gets to wear one of those sexy CPAP machines to bed. I won't care as long as I GET SOME SLEEP! He would like to have the study done before starting me on B-12 shots or pills or anything else. He did adjust one of my medications and it does appear to be helping a bit.


I am also being scheduled to see an ophthalmologist. I have been having trouble with fuzzy vision - one of my medications is plaquenil (I have been taking this med for about 15 years without any problem). It may be time to try something different. He ordered more lab work and a thyroid panel. It's all about waiting for things to be scheduled and the results of the lab tests now.


In the meantime, I still have thrush. I finished a 2 week course of medication for it and I still have thrush. So today I started a new medication that will hopefully solve that problem. I have lost 25 pounds. I am eating healthy meals, but don't have much of an appetite these days. I'm sure this has something to do with my weakness. I still putter around the house, but I find it more difficult to do little things. I'm slower.

Don't get me wrong. I haven't given up. I'm just tired. It will be better next week - I'm sure of it!

4 month mark

Happy Anniversary to me! Today marks 4 months since I began my Benlysta journey! No balloons, no pinata, but is something to recognize - that's for certain!

So what do I want to tell you about my life today? Well, things are pretty quiet now. I spend the days at home alone....

                                                             

No, it's not as bad as all that! I'm just trying to keep things light! Actually, this alone time is ok. I am focusing on things that I haven't had time to do in a very long time and it's a good thing. I am starting to collect the books that I really want to read. Yesterday I finally received a book called How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill And Their Caregivers. It's a mouthful, huh? But it was recommended reading by the "Lupus Now - Lupus Foundation of America, Inc." I also have another book coming called Coping with Lupus. Knowledge is power, right?!

Otherwise, I putter around the house and put things in order - something I haven't had the time to do in years. This is something I do V - E - R - Y slowly. My fatigue limits much that I can do, so there are lots of rest periods in between. I do feel satisfied that I am able to do little things - small victories mean a lot to me.

I am able to cook and eat really healthy meals and Ron is benefiting from this as well. Our insides are much happier these days. Hopefully, when I am able to do a little more exercise, the outside will start to show it, too. I have dusted off the stationary bike and spend at least 5 minutes on it in the morning. Sometimes, another ride at the end of the day would be just too much. I am averaging 3 times down and back up the stairs everyday.

I have no joint pain, no chest pain, no pleurisy, no nausea. Remaining symptoms are FATIGUE, headache, dizziness, thrush, and some brain fog. I can only assume that the fog is coming from all the medication. I write EVERYTHING down so that I don't forget things.

So, all in all, things are ok. Don't worry about me. It's all a process. Ron and I and Dr. N are committed to see this through. I am ever optimistic and am waiting for Benlysta to turn this all around. After all, remember the part above where I say that I am not in pain!!!

Infusion #7 is on August 2nd...3 weeks from today!!!!

Here's something new....

This a photo of a song thrush...lovely, isn't it?

I list things here to keep track of my journey so as to keep myself clear about how and when and what things are happening to me. I don't wish to offend the people that happen to read this along the way. But here it is...something new....another inconvenience. Hmmmpf!

With all the medications I am on, it didn't surprise me that I am ALWAYS thirsty. I drink water all day long. My mouth has felt dry and food has tasted different on the whole. All of this I attributed to the medications. Bottom line, my mouth has felt funny. Therefore, I have been brushing and brushing and brushing my teeth. I will spare you the details, but now I have THRUSH. Not the lovely bird in the photo, but a not so lovely coating on my tongue. If it's not one thing, it's another..sigh...

A good friend gave me a link to MayoClinic.com and I was able to get some information to help me take care of it...thanks, again, Eileen! I will soon be right as rain, I hope. The information I read was all about "adults with compromised immune systems" - yup that's me. 

On another note, I am adding another supplement today...Biotin joins the team on a daily basis for my hair...couldn't hurt, right?

It takes a village....

What a team!

Butterfly

I have not been the ideal lupus patient over the years. I would go to the doctor during flare ups and took my medicine mostly on schedule, but I was never vigilant about sunscreen or hats or protective clothing and in the long run, this has obviously done me no good. I never really educated myself on lupus. Yes, I knew that I had it, but I tried to down play it, deny it, act like it wasn't that big a deal. I always knew that I would flare around the holidays starting around Halloween because there was just so much to do. By Christmas, I would be completely knocked out. I did not take care of myself.

Now I have been given no choice but to do so. Why did I wait until I turned 50 to do it? Well, part of it has to do with the fact that this new Benlysta treatment wasn't available until last year. But the other side of it is that I must not have thought enough of myself to do what was important. Bad habits. Eating terribly. Little to no exercise. What was I thinking?

So now I have all this "free" time. Resting. Recuperating. Reading. I am arming myself with books on nutrition...yes, me...nutrition...and I am eating better than I ever have before. It's amazing the difference it makes in the way I feel. I CRAVE everything green and juicy and leafy. I am loving salmon and organic chicken. I used to love greasy hamburgers and pizza and pulled pork sandwiches....that all sounds awful to me now. I haven't given up coffee, but I drink lots and lots of water...something that I never really did before.

I have been reading some good books on lupus. I am finally educating myself and will now be a much better patient and advocate for myself. When I have been on the Benlysta Buddies support group on Facebook, I am amazed by how knowledgeable the people are about our disease and how they have struggled and coped. I am ashamed and embarrassed by how little I know about myself. I am going to remedy that now.

The butterfly is the symbol for lupus because of the butterfly rash that many people have over their faces. I  have decided to embrace the symbol of the butterfly for my transformation. Up to now I was the careless caterpillar, eating, eating, eating, not caring what I was doing to myself, being out in the sun, not taking care of myself. That part of my life is over now. I consider myself in the chrysalis phase now. I am mending and evolving. It's a very good thing. I just need a little more time and then...

Infusion # 6

Big day. The infusion went off without a hitch. Getting premed of dexamethasone before Benlysta now and it does seem to help.

Home now and gonna settle in for a little nap.

Will report later.