Day after my 1st Orencia infusion

 My Orencia infusion, yesterday, went well. I like my infusion nurse a lot, she is so good at her job & a nice person too. I didn't even feel the needle going in my arm, that is always a plus. I wasn't given any pre-medications. That was good because Benedryl makes me very sleepy who am I kidding? It knocks me out! While the medication was running into my vein I watch a couple YouTube videos on my IPhone and texted my husband. He was at a doctor appointment himself and was quite worried. So texting him made him feel better. Before my infusion I saw the doctor for a short exam. We went over a few issues and she gave me my blood work results from last week. All in all, the blood work wasn't the worst it could be. My liver enzymes had been running high since I was on Methotrexate. But, that is looking better. I have lost weight  and that helps the liver. Finally good news! My Sed rate (inflammation in my body) was high but, that is expected with lupus and Mixed Connective Tissue disease. There were some other issues but nothing to be concerned about. Needless to say I had been worried about my liver so, knowing that the levels are getting better made my day!
Back in the infusion room it was comfy and very large. Since my last try at an infusion medication my doctor moved into a brand new building. And the infusion room is all new with large very comfortable chairs. There was a elderly couple there with me. They were friendly yet not intrusive. It was the woman having a treatment and her husband keeping her company. It was very sweet. My mom went in with me to the doctor's appointment and to my infusion. She stay with me until the medication was running through a few minutes and then went to the waiting where my dad was waiting for us. I was glad to have her there.

Today, I sleep very late. I couldn't sleep last night and didn't fall asleep til after 4:00 am. But, I was comfortable in bed with my husband listening and watching videos on my Ipad with ear phones. I appreciate modern conveniences at times like that. When I woke up I feel sort of like I did when I had other infusion drugs. They give me a feeling like when you are getting a cold or virus and you feel weak and peekish. I also had chills earlier but they are gone now. I'm resting during the day so, that I can spend some fun time with my husband tonight.

All in all it wasn't a bad experience. I don't feel any better yet but, it takes time. And I'm always hopeful. My next appointment is 2 weeks from yesterday. Then it will be every 4 weeks. I hope this is the medication that brings some of my life back. Like I said, I'm hopeful.

Infusion day tomorrow wish me luck!

Tomorrow afternoon will be my first infusion of Orencia. I'm very relaxed right now but, I'm sure that closer to the time I will be a bit nervous. I don't get nervous over the needle but, more over the medication itself. It's the first time I'm trying this one so, I don't know what to expect. I don't foresee any hardcore reactions. But, I did read that it could cause (side effects)  headache, upper respiratory tract infection, sore throat, and nausea. None of those I want. Especially infection or nausea. Infection scares me because with having a compromised immune system infects can get worse very fast. And the feeling nauseous is the WORST feeling in the world, at least to me it is. So, I will bring some crackers to my appointment in case I do feel nauseous. Infusion treatments tend to take a lot of me. I think it's the pre-medication they give me and the medication itself that knock me out. I'm not sure what my pre-medication will be tomorrow. But, when I was on Humira it was Tylenol & Benedryl. They give Tylenol to avoid fever and the Benedryl to try to prevent allergic reaction. I'm also told to drink a lot of water beforehand. Some nurses will tell you that drinking a large amount of water before will help with inserting the needle for the IV. But, my infusion nurse doesn't agree with this theory. Either way, I still drink water because it's good for me. I have no kidney issues like many lupus patients. So, I'm not restricted to liquid intake. Drinking large amounts of water helps me to stay full and helps my skin to stay hydrated. Plus when I drink more water my facial complexion is clearer. I still get my malar rash but, I don't break out with adult acne. My appointment is in the afternoon so, I can rest a lot in the morning which will mean sleep. I see the doctor first and then go to the infusion center which is next door to my doctor's office.
Wish me luck!

Here are some things I will take with me to my infusion appointment:
~Bottle Water
~my bag of medications (that I keep in a cute, very large makeup bag)
~crackers or plain cookies (in case of nausea)
~my Ipad to entertain myself
~my earphones so that I don't bother anyone with the sound.
~maybe a small blanket (I tend to get cold)

Finally!

  After waiting for 2 months for my insurance company to approve the next treatment my doctor wants me to try. And after about 4 appeals, they said yes! Finally, huh? So, I will be starting on an infusion, biologic medication called Orencia. I start this Thursday. And believe me, I have many different emotions running through me. I feel hopeful, scared, nervous, happy, annoyed and probably more that I don't even know of. I will see my doctor first, then have the infusion that should take about 30 minutes. Then 2 weeks later I will have the infusion again, then 4 weeks later the infusion and then every 4 weeks. I hope that this helps with the bone wrenching pain that I have daily. I hope that it also give me some of my energy back. I've been on so many different medications, injections and infusions that I've lost track. I even did the newest drug just to lupus, also by infusion. That was Benlysta, but, it didn't work for me. I wish it did. But, it didn't. I know of several people that are on that treatment medication, it seems to works for them. I don't think it totally takes away the pain and fatigue plus other symptoms but, I'm sure it helps or else they wouldn't be on it.

I still have no answers as to what is wrong with my lungs. I won't have the last test til June and will find out the results of that and the Ct Scan of my thorax in mid June. There is a lot of waiting in my world of chronic illness. Wait for appointments, wait for answers, wait for results of new treatments, wait for new treatments to be developed and the biggest, wait for a cure! I hope that I see the cure in my life time. But, if I don't, I wish, hope and pray that I live a long time. There are a lot of things I want to do with my husband and family. I want to see my niece graduate and grow up. I want to be around for the good and yes, even the bad. So, I keep hope that I will do all of the above.

Orencia is a biologic drug that is used to treat moderate to severe Rheumatoid Arthritis. Of course there are things to worry about when taking the medication. But, with any drug there is concern. I'm just glad that after 2 months and many appeals my insurance company said yes and approved it. My doctor hopes that if my RA get better that in turn it will help my systemic lupus. And since I have already tried the only drug specifically for lupus (Benlysta) and it didn't work, we have to try this. It's a game of wait and see and hope that the medication doesn't hurt me. But, I have to take the chance so, that I hopefully will have more better days than worse.

Wish me luck!

Til next time....

Deb

Happy 50th anniversary to my darling parents, I love you.

Today was a wonderful day. It was one of those days when I almost forgot that I have chronic pain. My parents celebrated their 50th wedding anniversary and I couldn't be happier! They are my inspiration in many ways and I'm ever thankful that they are healthy and happy. Not a day goes by that I don't thank God for them. Since 2008 when I was officially diagnosed with MCTD (mixed connective tissue disease) with lupus (sle) being my primary disease, they have spent at least 1 day of the week with me. They take me to doctor appointment, to diagnostic test and sometimes grocery shopping too. And on days when there are not appointment we just go to lunch, shop and spent the afternoon together. It's become a important part of my routine and one that I look forward to very much. But, even more than I, I know that they enjoy this time with me. I see it in their eyes and hear it in their voices when I call them to ask if they can take me somewhere. They never say no, never. My husband works long hours and is unable to take me to most of my appointments. He wishes he could but, I understand. So, my darling parents take me. Or like I said, just spend the afternoon with me. They've been by my side on awful days when I've been crabby from all the pain & fatigue I experience. But, when I apologize for my behavior, they tell me to stop, they understand. They've been on this journey with me since I was 8 months old and had my first seizure. And through it all when some parents break up because of the pressure of a sick child, they have stood strong, together. I'm so proud of them!

Til next time....

Deb

May is Lupus awareness month.

May is Lupus awareness month. Each day the Lupus Foundation of America will be sharing a fact about lupus.

Today's fact~

*Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body.

Til next time....

Deb









* According to the Lupus Foundation of America's website-www.lfa.org

Traveling can still be fun when you are disabled.

 This past weekend my husband & I flew to Washington, D.C. His best friend, from childhood was getting married, in Virginia. Traveling with chronic pain or illness is hard and I don't do it often. But, when special events, like this come up, I do my best to be there. I love to travel but, sometimes my body doesn't. By, sometimes, I mean, in this case, always. Traveling by car is hard too. And I don't think my body could take over 8 hours in a car. So, anything over that, we fly. There are several things I do before, during and after traveling. The first is to be by organized. I make lists of important things to take. Making lists and checking things off on this list help to lessen the stress of travel. And we all know that no matter if you are traveling for business or pleasure, stress just doesn't mix with it!

   Before traveling planning our travels is key. I don't plan every minute of the day, I like some spontaneity. If we are traveling by plane, I have to book flights that are direct, no stops, no changing of planes. I made the mistake a few years ago in booking our flights with a plane switch and boy did I pay for that later! The stress of getting off the plane and rushing to the next gate only to be delayed in our second flight made me feel terrible. I felt like a fleet of trucks ran me over! Even if it is more expensive a direct flight is the way to go. Packing is key too. I have to pack a variety of clothing and a jacket or sweeter that will keep me warm when I get cold, which happens often. My medications can make me sweaty so, I have to have enough clothes to change into. Speaking of medications, I also go through all my medications making sure that I have enough and extra for my trip. You never know when and if I would have to stay longer than planned. Taking my medications on time and properly is very important. My skin and mouth also get dry on a plane. So, I make sure to buy water or juice before boarding. I also pack a product made by one of my favorite cosmetic companies. It's called MAC Fix plus. It's basically a water that is infused with ingredients that hydrate the skin and make it feel good. I spray it while in flight a couple times. And the great thing, it doesn't ruin my makeup.

 During a vacation or trip, I make sure that I rest enough too. Even if I have to cut my time short during an outing, I just go back to the hotel or wherever I am staying and lay down for a bit. Most people understand and know already that I need rest so, it's never a problem. When traveling, I also make sure that my travel companions know that I might have to rest more than the average person. My husband usually uses my rest time for reading time for him, which he loves to do. Or he will go to the gym or exercise center in our hotel. Eating nutritional foods and making sure I drink a good amount of water is also important for me when traveling. I especially make sure that I'm eating proteins, bananas (which give me potassium that helps reduce leg cramps that occur when traveling) and grains. And of course a nice treat of chocolate is a must when traveling too.


After a trip away, I'm usually quite tired and sometimes spike a fever from a flare. Rest, fluids and Tylenol help with that. I don't usually plan for much activities for a couple days after returning home. But it's okay, I use that time for catching up on favorite television shows or rent movies that I enjoy or haven't seen yet. Pacing myself while away helps for how I may feel when I return home. But, if I pace myself and eat properly and sleep well each night, I will enjoy my vacation or get- a- way better. Usually sleeping well while away is not a problem. I know the hotels which my husband and I are more comfortable staying so, I book our stays there. Also, I will ask for a shower chair or book a room made for the disabled. Sometimes the rooms for disabled cost more which I think is very unfair. If it's a lot of money then I will book a regular room and ask for a shower chair.

 This trip that we just returned from was very nice. But, I must admit, I did not appreciate that they did not have one shower chair in all of  their hotel. But, the room was big and very comfortable. And I was able to stand in the shower and only needed my husband to help when getting out of the shower. Sometimes hotels and places like restaurants or stores are not prepared for the disabled. Luckily,  I am able to get out of my wheelchair and walk a short distance. The people that can't do that, I worry about. It's not fair or right in any way. But, that's for another blog entry.

A vacation can be enjoyable if I plan ahead, rest and pace myself during my time away. The roughest time is when I arrive home. That is when my body will usually go into a flare. I think it's because of all the commotion and activity while away from home. And even though I rest as best as I can, I'm still very tired for a few days after. There is nothing I can do about it, so I don't get upset. During the last almost 5 years, I've learned to have fun my way. I may not be able to go zip lining but, I can take great pictures of the people doing it. It's a bit of give and take but, that's what my life has become. I don't feel bad about what I can't do,  I just relish in things I can do. I don't have to stand in long lines at Disney World. I go straight to head of the line or the disabled entrance. So, it's not all bad.

Til nex time...

Deb

Makeup is my distraction from the ugly things in life.

 I had intended on writing more in this blog. I even wrote about it in my last entry. I guess other things distracted me. Mostly beauty related sparkly things distracted me. I've been purchasing and trying out new beauty products specifically, makeup. I love makeup. Now don't get me wrong, I don't pile it on. In fact, I think after years of practice, I've become quite good with my technique. My favorite part of the department stores lately has been the cosmetic counters. I love looking at products that are new to me or old favorites. Sometimes memories of days gone by flash through my mind when I am makeup shopping. I am taken back to being a little girl and watching my mom applying her lipstick and rouge or as they call it now, cream blush. I used to be fascinated by watching her apply eyeliner and coats of mascara. Mom was never a base/foundation person. It's only now when I do her makeup (when she lets me) that I apply a bit of powder to even out her skin  tone. She doesn't need much. Her favorite is lipstick. And she is forever reminding me to reapply my own lip color. It's probably due to her that I carry at least 2 lipsticks and 2 lip gloss in my purse for those touch ups. The other day I was cleaning out my purse and found 6 lip colors. I smiled and thought of my mom. I love lipstick too but, I think better than that I love eye shadows. There are so many gorgeous colors and textures out in the market. One of most favorite is by M.A.C. and is called, "Satin Taupe". It's a beautiful combination of taupe and a very light purplish color. I love it! I also love blushes or as mom would say, rouge. I love brushing a gorgeous pinky-peach across my cheek bones. It makes me feel healthy and fresh. I've been discovering some nice cream blushes lately. I like to apply them lighting on the highest point of my cheekbones and then apply a powder blush that compliments the color over that. It makes me happy, and I'll take happy any day. And of course there is mascara and eyeliner. A good application of mascara and liner can make a tired looking eye just pop! I love to put a few coats of mascara on my lashes to make them look almost unreal. And the one makeup product I am addicted to is foundation. It's the one thing that mom has never liked. But, that's okay I love it enough for the both of us. I'm always in search for the perfection foundation, is there such a thing? I don't know but, I'm having fun trying. A good foundation can make a real difference in the way one looks. For example, if the color is too dark it doesn't match the neck and you then have what us makeup junkies call, "the horrible line of demarcation" No one wants that. If the color is too light, they you just look like a ghost. If it doesn't cover redness or whatever you need covering then, it's just a waste of money. And why bother putting it on? It's a science that I've loved probably all my life. I also enjoy how I continue learning more about makeup and application. I've learned a lot watching many YouTube videos. And I've also created a few of my own tricks. On days that my lupus or fibro or RA act up, which is every day, I enjoy "putting on my face". It cheers me up. But, as much as I love it, I don't wear it every day. I like to give my skin a chance to "breath". And most importantly, I always take it off at the end of my day. The absolute worst thing for the skin is to sleep with makeup. I've become so used to my nightly skin care routine that I can not sleep with makeup on anymore. I used to be able to when I was a teenager. Shame on me back then! But, I have learned and now take better care of my skin. So, that's where I have been for this last month or so, enjoying my love of makeup.

 

As far as my health and any update, I'm completely mad at my insurance company. So, I won't poison this post about makeup with talking about it now. But, I will soon.

 

 

Til next time....

Deb