I so want to go on vacation – I just have no idea where to go. Everything is expensive and I’m not sure I can fly as traveling to a connective flight would be difficult as I don’t move very fast.
So I look at all the vacation sites and wish. LOL … more than likely, I’ll not be going anywhere, again this year. Yup – Woe is Me!
My experiences in the first month with Lupus – it S U C K S!!!! LOL, I felt so lost as everything I had read was such a doom & gloom type of thing. Yes, it said that many have gone on to live productive lives for 30+ years, but it got me to thinking, if I’ve had this for awhile, how many of those 30+ years have I already spent?? Just one of the thoughts that goes through my mind.
So I actually had to grieve my health. To give myself permission to feel the loss and sadness of not being able to do what I would take for granted. So basically, I went through the 5 stages of grief. I kept going back and forth between anger and depression, one feeding the other constantly, however, until I found a book about the first year of Lupus, by a person who was diagnosed with Lupus in 1999, did I start moving toward acceptance.
In this book everything that I am walking through, physically & emotionally, she has walked through and talks about it in her book. It’s like having a friend right there with you, letting you know what to expect, however, NOT telling you what to do. Which is pretty wise on her part as each body is different and unfortunately, Lupus affects each body different. So I’m getting support through a book, even though many people I’ve come across have said that they know so and so who has Lupus and I can give them a call so you can talk. I know it is a good thing to have a support system, which I do have, but to have a live support group of lupus fighters, I’m not ready for. If I get too much info, my eyes glaze over and I tune them out. So reading this book is a blessing. I can read as much as I can handle, put it down, then in a couple of days, start up again.
One thing that she says, and unfortunately, I’ve found out myself, is that there will be trial and error. More like trial and fire! I’ve been trying to drink more water. I detest the taste of water. I know some of you will say there is no taste, but there really is. So I have to chug it down. If I have to drink water, I’m a water snob and have to drink bottled water. Well, we ran out of bottled water and being the stubborn person that I am, wouldn’t drink even the Britta filtered water. Instead I drank diet soda all day long for almost a week. Well, my body let me know that it wasn’t happy with that.
Both of my wrists, both of my ankles and the balls of both of my feet felt like someone was stabbing them with nails all at the same time. I’ve already been in pain, but with that much pain, I couldn’t move and all I could do was cry. I did take a pain pill, but it was taking forever to get to these areas. Hubby was the best, when he came into our room to check on me, he saw I was crying. So he turned everything off in the front room and came to bed and sat with me until the meds took affect. I now know I cannot do artificial sweeteners.
I had mentioned to one of my friends that I caught a glimpse of the pain Jesus went through for us. If in my flesh I couldn’t handle it, it is just amazing to me how much He loves us to go through all that he went through for us.
Thankfully my regular doc tweaked my pain meds. The pain isn’t a debilitating pain/ache. I can actually move without too much discomfort. Friday night I actually danced at the concert in the park. I paid for it later, but after not being able to move without extreme pain for the last 5 months, I was celebrating with dance. I even made it to church last night!! I haven’t been in a long time.
So that is my first month’s experience. I now feel almost normal, but still have to be careful not to over do it. As the doc is able to manage my pain, there isn’t much he can do about the fatigue. What my brain thinks I can do, I know I can only realistically do about 1/4 of what my brain thinks. Dang that inner child!!!
Diagnosis – Doc is 90% sure I have Lupus. I now have a new medication to take and will do another blood test in 4 months and see him after that.
Today was a good day, as I hurt this morning, but, by the time I got to work, I was able to move without too much pain. After the doc appt., we went to Reno and had dinner then wandered the mall, looking for jeans. Hubby is now confused on the sizing of women’s clothes. HAH – I told him, now he understands why I am so frustrated when I go clothes shopping.
It was good to walk, but walking was hard. I got slower and slower as we wandered back and forth. I finally had to listen to my body and tell hubby that I was done and it was time to go home. I guess, I need to be more aware of my body and pay attention to what I can do and accept the things I cannot do, for now.
I’m still hurting, but I’m glad I have a diagnosis and a plan. As much as I’m not looking forward to NOT eating processed foods, I’m looking forward to investigating and discovering a new lifestyle diet.
So, thanks for hanging in with me while I was silent, waiting for test results.
Actually it is 6 1/2 months for my initial appointment with the Rheumatologist – my appointment is October 31st. What the heck!!!!! I guess we don’t have that many in this area, so they book out 6 months at a time. If I have something serious, I’ll be crippled by that time!! Argh!! Kinda frustrating on my end. We see our regular doc next week, we’ll ask him if this is normal for up here. One of his daughter’s that work in his office, said that 6 months is normal. Crazy, I tell ya, just Crazy!!!
I survived my 2nd full day at work!! Hubby’s not feeling well again, as he has a low grade fever. We both do not need this all over again. I’m finally feeling almost normal, I cannot get sick again!! Neither can he, he’s pretty aggravated also. *sigh* I don’t think it helps that it is still cold here and it was snowing today. I am so looking forward to 70′s this weekend. I may work in the yard! Well, as much as I can. I find I have to go slow in whatever I do. I walked to the post office the other day and I was moving at a turtle’s pace.
Those of you that have read this blog for several years now, know that I detest tax day. I always have to pay … which is crazy! But, oh well, such as it is. I have a friend that is pushing to get rid of the IRS and have a straight tax across the board. The more I think about it, the more interesting it sound, but it would never work, as those working for the treasury dept. won’t have anything to do and would be out of a job. As a matter of fact, I think one of hubby’s old girlfriend still works for them.
Today was my first full day at work. I spent all day doing another job, as she’s on vacation this week. So, tomorrow should be catch up day for me. I’m happy I survived the day. I’m kinda wooped but that is okay. I still have enough energy to check in with y’all.
It is so sad to hear about the Boston Marathon. It seams we need to put into affect a system to check every event for any explosives or possible danger. Sad that it has come to that. I just hope those in charge do that and make it a standard procedure.
I’ve been working in the finance director’s office all day. It’s been fun, but it is the first time for the communication’s director to be exposed to me for the day. I’m talking to myself and giggling as I remembered something to do, then forgetting to do … hah … it was fun, but oh my word…it took me all day to do what the finance director does on Monday. I’m sure there is something I’ve messed up – hopefully she’ll be able to correct whatever I messed up when she returns.
I’ve changed my desk around and I’m loving it. I have more room and I don’t have to fold in my desk every night. So, yes … I’m a happy person with my new desk arrangement.
Well, the meds are kicking in, so I guess I should get ready to go to bed – otherwise, hubby would need to carry me down the hall.
Y’all have a great evening and I’ll talk at ya later.
Or do I dare ask that question?
My hands have been hurting and swollen. So the last time I was in to see the doc I asked him if we could do the blood test to see if I had Scleroderma. I just got back from the doc, as he has received my results. My Rheumatoid Factor is above the normal range and my ANA result is Positive Abnormal. Now I know I’m abnormal, but to actually see it on the test … well …
Basically what this means is that I have to be referred to a Rheumatologist who will then do more testing to narrow down what I have. My doc feels I have one of the following: Rheumatoid Arthritis or Lupus or Scleroderma. Of these three I hope I have Rheumatoid Arthritis. I have seen with my own eyes what Scleroderma can do, as I had a sister who died from this disease. Lupus is not much better. But…now I get to play the waiting game as the Rheumatologists in this area are only in Reno and the wait is about 3 to 4 weeks or longer.
I’ve been using a squishy ball to massage my hands. Plus using lotion every time I wash my hands to keep them from drying out.
Have I told you how much this getting old stuff really stinks??? Well it does!!!!
Since my last post – I’ve been sick on and off, until the end of February when I got real sick and almost ended up in the hospital. Pneumonia/Bronchitis – it’s too close to tell exactly which, but doc said either way, the first time I saw him for this, I was so sick that I had to use a walker to walk as I had no strength/energy and I couldn’t breathe.
Almost a month later, I’m able to walk without the walker, but I cannot over do is as my lungs start to burn and I have to sit down or lie down until I feel better. If I over do it, then I’m down for a day.
Two and a half weeks ago, in the midst of my sickness our dog died. Unfortunately it isn’t just me, but hubby has been sick as long as I, so going through the dog dying was a set back as we were up all night holding him until he passed. It’s like watching a human die. The gasping at the end and finally the relaxation as they leave their body. I know some, like my mom, just slowly stopped breathing and slipped away, but there are some that have trouble breathing and do the gasping thing. Anyway – Freddie’s gone and we will miss him. One of his favorite places – on this pillow/couch.
Hubby is getting better but still not strong as he usually is. We both get winded easily. I’m about 60% better – the Elders (The head pastors) of our church as well as the Associate Pastor came over to pray over me and anoint me with oil for healing. It was great to see them and talk to them for a few minutes – I sure miss being around these amazing people!! I don’t have a picture – but I made them all put on masks before they entered my house. I’m not strong enough to do a thorough clean in this house – so I insisted on them wearing masks to protect them from whatever may be lingering in our house and from me.
So that has been my time away from this blog. I hope you are all well and getting excited about Easter this weekend!
It has been a wild month. Between being sick on and off, mostly on, and the events going on at church, I’ve had enough energy to get through work and go home to bed.
Our church hosted a Comedy Night with Nazareth. He’s pretty funny! Then he did the weekend teaching at church. The following weekend was the Love & Respect Conference and over 100 people went through this conference. It was great to hear how many couples reconnected in their relationships. This weekend is the church’s 15th birthday. Amazing – donuts and T-shirts is in store for this weekend. After that, next Friday is our Thanks to You Volunteer Appreciation. We are celebrating what God has done in our church through our volunteers. I’m tired just typing this, hah! We have a break and then the Easter Preparations begin. Yup, we are rockin’ and rollin’ and lovin’ every minute, even though it’s exhausting!
For Valentines Day, hubby went out at bought me the last ticket for this concert. I am so excited to go on a girl’s night out with a bunch of incredible ladies. Thanks S4L for letting me know about this. I know the flyer says it’s in California, however, the tour will be in Reno on Saturday 2/16/13 night. I am so excited to just have a night off and doing something other than thinking about how behind I am at work!!
Mind you, hubby going out to purchase this ticket was no easy feat as he is still sick. He’s now on his 4th round, 3rd different, antibiotics as his lungs keep having bronchial spasms when he gets in the cold air and can’t breathe as well as having a sinus infection. So I am very grateful and appreciate the effort that it took for him to did that!
I’m also on another round of antibiotics – but at least I am able to go to work and function. I’m feeling way better and left work early today so I could come home and rest to be ready for fun tomorrow night.
Plus I’m excited that we have Monday off for President’s Day. Yes, an extra day off to recoup and shop. I need to find something to wear to Thanks to You.
So that’s my crazy world – I’m still hanging in and loving’ my church.
Y’all have a great 3 day weekend!!!
I thought I would answer a couple questions, frequently asked in my comments.
The Theme I’m using in WordPress is Retro-fitted.
As for how to subscribe on the RSS feed – I’m not sure as you all read this blog from different avenues. Sorry I’m not much help.
I start Tai Chi on Saturday – I just have to remember to get up out of bed for the 8am class. I’m not sure where it is … so I had better leave earlier.
Is it me or is winter just a bit more wintery than it has been. I know, I live in an area that has a change of seasons. However, two to three storms a week is getting a bit much. I haven’t been driving due to my eyes. But now that I’m able to see again and I can drive, I won’t drive in snow and ice. Yes, I’m a wimp, but not thrilled about it and I don’t want to!
Work is busy busy busy. I’m loving it as I’m getting more involved in different events, but it does mean that my time is shorter to get my work done. It’s hard to find a healthy balance when so many things are pending and in the air!
We are doing an I Do series at church. Yes, it is geared for marriages and it starts this weekend. One of the weekends we are having a comedy night. I’ve heard the comedian before and he’s hilarious! The weekend after that will be the Love & Respect Conference. One of the best marriage conferences around. It is not geared toward one gender. They speak both genders language. If you have a conference near you – take it, you won’t regret it. If you are single – take it anyway, they give you tools to relate to the opposite sex. It’s a good relational conference.
I started S.T.E.P. (Striving To Experience Peace) last night. I’m re-taking the Anger Management class as I missed half of the classes last time. I really enjoyed it last night and am looking forward to the next 9 weeks. One of the things I love about our church, they care about helping people get over their hurts, habits and hangups by offering many classes. I may have to take the Boundaries class again, as it goes hand in hand with Anger Management. There are so many classes, it’s hard to choose!
How do you get over your past hurts, habits & hangups? Let’s face it, one has to recover from Life. We all are broken and sometimes we can’t get better until we face our brokenness head on. It’s not easy, but it’s definitely worth it!!
So that’s about it for me tonight. I’m tired, as usual and ready to go to sleep. Ya’ll have a great night!
I’ve managed to let myself go for many years. When mom died, I was quite active with Tai Chi, Ballroom Dancing, etc … since she’s passed, I wasn’t able to go back to those things. Now that I’m having more health issues, It. Is. Time.
As soon as I get the new Recreational Departments class guide, I’m signing up for Tai Chi. Maybe Ballroom Dancing, but that will depend on hubby.
I’ve worked in my kitchen for 2 days and my body is killing me. I haven’t even finished, just did what I could. I also took down Christmas, although it wasn’t much as my tree was only 2 feet and my ornaments were little and only on the face side of the tree.
Now it’s after twelve and I’m done – so out of shape it isn’t even funny!
So … what are you going to do to get moving this year?