23 days rolled into 1

Thanks for your patience as several of you have been waiting for our trip notes and all the other great stuff I blog about. As always ignore grammar and enjoy <3 This is 23 days of fun…well mostly fun…..

Tuesday Sept 1st we finished packing the motorcycle. Below is a pic of the motorcycle. It may not look like a lot but there is 3 sleeping bags, a weeks’ worth of clothes for us both, blankets, a blowup bed, emergency stuff, my medical stuff , food and snacks. Not bad packing if I do say so myself. 😉 Oh and the cat, her name is Jeannie…she will always be our die hard rider….

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Our plan was to make it to Glacier park in Montana………

I was warned before leaving that I might have a hard time traveling with my health but it actually wasn’t as bad as I anticipated. Mostly my fatigue from the disease and chemo meds made it hard to get up in the morning so we could continue on everyday but Brian was nice and let me sleep till around 11 everyday which was nice.  I felt bad as I couldn’t roll up sleeping bags or pack the tent everyday due to my handicaps but let me tell you …he is now a PRO at tent packing and sleeping bag wrapping…..so he can thank ME for that…HA!

Wednesday we headed to Marysville Ca where we had tickets to see Foreigner and kid rock. Here is where I found a Silver lining to being sick. We didn’t have to pay for front row parking and Toyota Amphitheatre bumped my crap lawn seats to mid level seats! AWESOME Outside of all the “plant smoking” it was great!!!! **** (The old ladies behind us I  kid you not smoked close to a FIELD)****I had the time of my life!!!

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Thursday we made it to the Oregon Line. In fact we stayed at the “state line Rv park”  This place seemed quiet until the huge yelling match woke us up around 5am. I was just waiting for the bullets to go flying, I have no idea what these people were fighting over but I just wanted them to shut up so I could sleep. Doesn’t everyone know I am sick and need extra beauty sleep…geez

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Friday we made it to Boise. In Boise I ENJOYED a lime Rickey from Artic circle…my favorite place to eat in Idaho..YUM  Then we stopped off at the Harley shop because my silly but decided to throw over board my riding gloves. So after spending money at the Boise Harley shop we headed off back into the mountains and found a campsite up near Stanley Idaho. It was a cute little spot but our neighbors were super loud…an entire family was camping and when I say entire family, I mean entire family all the way down the 2nd cousins.

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Saturday we got up and made it to Stanley Idaho when the SNOW yes I said SNOW began to fall. Ok so here I will tell you what Brian and I packed. Tank Tops and Tshirts…  I can’t even begin to tell you how cold I was. My disease went crazy…this was the first time I was reminded how sick I am.  We didn’t have a choice but to stop, gas up, raid the convenience store of all warm items, eat and race to the next town before the temp dropped to the negative numbers.  This day I was probably the crankiest because I was in so much pain and I was freezing.  It was definitely NOT a motorcycle ride to relive.  We did make it to Challis Idaho where a Hot Springs was recommended to us.  Challis Springs is amazing, if you ever find yourself up in Challis, do stop!!! Great Rv, ma and pa bed and breakfast. And the Hot Hot springs felt so good, well until I had to get out…

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So here is our next mistake, pay for the bed and breakfast at Challis Springs or camp again at Challis springs…. even as the temp drops…..guess what we did????!!

Yes I froze that night outside in the tent and even and then to make matters worse our blow up mattress broke ;-( All I can say is we LIVED. We truly lived.  We are true CAMPERS!!!  NOT Glampers lol  ******SIDE NOTE**** we did check the weather before we left and it said 80’s all week…..never trusting the INTERNET again! 😉 It was here we knew we would not make it over lola pass to Montana due to the weather and at this point my body was done!! The cold had exasperated it and I was miserable.

Sunday morning after peeling our frozen bodies off the ground, we headed to Twin Falls Idaho (my Home) where we planned on replacing our blowup bed and upgrading our sleeping bags.  We rode to Twin, replaced our items at Big 5, and then decided we needed a good night’s rest at a HOTEL.   Warm room with a BED and shower!!! YES YES It was great to be home also, where I grew up. No matter where you go in life, there is always a place for your home……I remember thinking this might be the last time I ever get to go home…maybe things happen the way they are supposed to go…

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Monday we got up and met with some family <3  had brunch and many laughs 😉 I love seeing people that mean the world to me. I love you guys so much!!!

After brunch we headed back to Nevada and made it as far as Winnemucca which surprised me. That was about 5 hours with my broken body.  In Winnemucca we ran into every Burning Man person heading home and even shared a camp site area with some Burning Man Folks at the KOA. One more night of camping is ok right??? Yes it was, as were back to normal weather by now.  But I can say that my new 0-  sleeping bag worked great in 60- weather LOL   In Winnemucca we stopped at Walmart where, I heard “ is that a REAL GUN?’ before my mouth went off with, “who in the hell carries a fake gun”  I turned to find this 90 year old vet walking  with a dog in a cart. I calmly said thank you for your service, which prompted a cute conversation.  Apparently he is now alone and Walmart walking with his dog at night keeps him going.  It was great to listen to his life story. 😉

Tuesday we stopped in Lovelock where I forced brian to be sentimental for a minute and hang our love lock FINALLY……..COME ON people……No I didn’t force him, I actually forgot  and he was kind enough to stop and do it with me.  AWE AWE…..I know ladies be jealous…. 😉  After 18 years of knowing each other and 12 years actually together as a couple, it is  about time. 😉 The lock shows the day of our first date which was November 1997. Everyone deserves a second chance at something, so glad ours is each other.

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We then pulled into our garage at around 4:30pm with 1366 more miles on the Harley!!! WOOHOO

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We did it, I did it! I made 1366 miles, this damn disease did NOT define ME. It changed some things about the trip but it didn’t STOP it. I know we had our sight on Montana BUT next year we are planning a trip to Sturgis with a few people and I know we can stop in Montana Then and it should be warmer then too!!  If you are interested in going next year with us to Sturgis, let us know. We will more than likely have a vehicle follow too…you know for my sick butt…..so if you want to join, there is ROOM!!  A huge thanks to Brian who even when frustrated with the weather and my health he still made it a trip I will never forget and for that I am forever grateful.  I know it is a hard life, watching me go through something you can’t stop or really even help with but stuff like this makes it all worth while….

Wednesday we slept in until a friend of ours stopped by to walk our dog.( so grateful to friends who help) Then we went back to bed. That adventurous trip wore us both out.

Thursday  We had lunch with Our grandma who is the best woman i know!! Then relaxed the rest of the day as i was still not doing so well.

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Friday, we slept in until noon as i still was hurting and Brian was still off, so why not?! Lots of movie and Tv time!!

Saturday Brian woke up in pain. Yes Brian?! it was so bad i almost called an ambulance because i couldn’t get him off the ground.  I finally got him dressed and helped him to the car and headed to the hospital where he was diagnosed with a kidney stone! It was awful, it is hard to watch someone in pain and you can’t do anything about it!! This day was rough for me because i did not have the strength to stay with him the entire time due to my health so i took turns laying in my car in the parking lot and then going back in the hospital to help him.   This is when family could REALLY come in handy but we don’t choose who is here to help and who isn’t.

Sunday we tried to go on a ride to tahoe where my body just quit on me. I began to internally bleed and my liver swelled. Back home and to bed i went. This is getting so OLD!!! But i did get in a few pics before all the health crap.

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Monday my liver decided he needed some attention and that is when my health went from poor to crap!

Tuesday and Wed i was in bad shape but was refusing to go into the hospital because they don’t treat chronic patients well. Unless we are DYING that moment they could care less. It is really hard to explain but if you ever DO NOT believe me, come with me next time!!  Mom Jeannie came over Wed and stayed with me awhile because Brian went back to work today.  It was great to have her over.

Thursday was the worst i have felt in awhile and at this point my back was now involved in this mess. So off to the hospital we went where Dr Doogie Howser  did nothing. Until some other stuff is finalized i can’t speak a lot about this visit. But i will tell you i received zero treatment and was sent home.

Friday my back was so enlarged Brian took me back in to the hospital where they found tears in my disc’s surrounding my spine. And did i say how i love Ej’s (iv in the neck) well i love them so much i had 2!!!!  They gave me some yucky meds(steroids and pain meds) and i went home on bed rest with a referral to a spine surgeon.

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Saturday i forced myself to get up for a few, i had been in bed for almost a week and a half in pain, i needed to get UP. Brian took me to breakfast at Squeeze Inn. I must say this place is pretty good and they accommodated my disability which was great! I walked awhile and then went back to bed.

Sunday Sept 20th  I spent some time with a pastor who reminded me about HOPE. i really needed this!  I then went back to bed. man this health shit sucks!

Monday i saw my specialist where she explained to me my new disease. #6 is what i named him. It really doesn’t matter anymore what all these diseases are doing to me, what matters is what i choose to do while all of them live with me.

Tuesday i needed a day for ME. I invited a new friend Nicole to walk with me. I really like Nicole, she and i have so much in common. God brought us together to help each other. God knew i was feeling down and lonely as far as having someone understand what it is like to be sick, and he brought her onto my path and me on her path. Nicole i am sorry your sick too but i am so grateful you are! IN A GOOD WAY! <3

So here we are TODAY  Wednesday the 23rd. I actually got up at a good time 10 am and then went over to Chester’s Harley and visited with some other HOG members. All i can say is if you are having a bad day, go hang with these great folks! Laughter truly is the best medicine!!!    I know this blog is long but hey……you guys are so nosy and have to hear everything…….its your fault…..thanks for your support as always…….and your prayers…keep em coming!

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Lucky ME

Laying in the hospital the other night, I wrote this. I wrote it because I was frustrated because several times I hear from people there going to be there for me yet i call upon them to help me and they’re not there or they push me away or something and it’s really becoming a problem. I cannot stand falling into so many of these chronic disease statistics it’s driving me crazy and I’m going to keep speaking about it until things change . Just because we have a disability just because were sick just because were chronic just because were possibly terminal does not give you the right to treat us the way some of you do!! If you don’t want to take care of us do not choose to be in our lives!
Tonight I really want to touch on caregivers and the lack there of. As most of you know if you’ve read my all about me section you know that I have had people come and go and I have heard every excuse under the sun about why they couldn’t deal with my health. And if you look up statistics it’s over I believe last time I looked it was over 76% of people watch loved ones leave them while dealing with a chronic and or terminal disease. I really find this extremely shocking I guess because I’m not that type of person I wouldn’t leave someone during some crisis. I have already helped some people get through some things and not once did I think about leaving; it didn’t even cross my mind I knew that there was a light at the end of the tunnel eventually and that no one should have to go through something painful frustrating sad horrible etc. alone. But God made us all different and quite a few people that have been in my life have been the complete opposite of me as far as wanting to stay there and help me get through this health stuff. And trust me I know that this is nothing easy to go through and some days it is zero fun but I didn’t force anyone to be in my life except for family and hey I didn’t force them either just like I’m sure you didn’t force the people that are in your life that maybe have left you.

I’m going to get a little personal here because If we don’t talk to each other about real life stuff like what we deal with living with these diseases and what some of us have to go through on a regular basis then people will think its ok or worse yet doesn’t exist. And in my opinion when people come into your life by their choice they know you’re sick I think it is extremely cold hearted to push you away and or leave you. Or to take another step further like abuse you I have read a few cases where the caregiver has abused the sick person because they were tired of dealing with them. 

My biological family is just like any other biological family we all have problems not everybody gets along but I never in 1 million years thought that I would be alone fighting a disease that i can’t fight. Never in 1 million years did I think I would turn around and very little family would be standing there. I thought that blood meant everything but I was wrong. It’s hard knowing that you have family here in town and yet You find yourself alone a lot. I can’t even begin to understand how you can let your firstborn as in my case go through what I’m going through & not want to be there. I hope my children know that as long as I’m alive, no matter how sick I get I am always going to be there for them; no fight no argument is ever going to be enough to push me away. I love them unconditionally. And to be completely transparent once my family members start turning their box for one reason or another I begin to think to myself, if my blood family can’t even be there for me how can anyone else and I know that kind of sounds crazy and sad but it is what I think and I know I’m not alone in this. I have talk to some other people who are fighting a similar disease like myself and they have found themselves in a very similar situation and fortunately you kind of get in this depression funk and it’s what you think it’s kind of a form of abuse in a sense. Then I have friends who I have known since grade school and/or since high school who have been in my life and then as soon as the blood work began to get bad and the surgeries began to pileup the more people start running for the hills. I have heard so many times I can’t watch you die! Or my favorite one it’s so hard watching you go through this, i just can’t deal with it. Or you are making me sick because i have to help you so much. Huh! imagine what it’s like for me! But here’s the real kicker I can’t run I can’t run like you do I can’t push myself away I can’t tell myself excuses & push you away…..SO…lucky you. 

Lucky you that you get to escape your promises that you made, Lucky you, you get to move on with someone who isn’t sick, Lucky you, you get to keep your job and enjoy the life you dreamed of, lucky you! did you enjoy filling my head full of promises and telling me you’re never going to leave? lucky you for leaving me and pushing me away Lucky you lucky you

Do you feel lucky now,is your life so much better do you feel guilty for lying & hurting someone you said you would love forever ?lucky you lucky you. 

This is how I felt for a long time I felt like you were the lucky one but the truth is it’s lucky me lucky me whether you were family friend or a lover you never deserved me anyway. My life might be shorter than yours but I can guarantee it’ll be filled with more love than you could ever have in a lifetime so lucky me lucky me. 

  

Rheumatoid Arthritis By Accordant Health Services

Disclaimer: This is some information i took off of the CVS Specialty Site, this is NOT written in my own words. You may or not agree with everything written by Accordant Health Services but it gives a digest readers definition and for those recently diagnosed, it might help explain.

BY ACCORDANT HEALTH SERVICES

What is Rheumatoid Arthritis?

 

Arthritis means “inflammation of a joint.” The word arthritis comes from the Greek word arth (“joint”) and itis, which means “inflammation.” There are over 120 types of arthritis. Rheumatoid arthritis (RA) is one of the most common kinds – about 1.3 million people in the United States have it. Worldwide, RA affects about 20 million people. RA has been seen for centuries. Some skeletons that are thousands of years old show evidence of RA.

 

RA is an autoimmune disease. This means that the body’s defender – the immune system – doesn’t work right. A normal, healthy immune system protects you from wounds, germs, and other threats. It does this by sending out special cells to attack the problem. But if you have RA, your immune system gets confused. Instead of protecting you, it tells the special cells to attack your own joints.

 

Joints are the places in your body where two bones meet each other. RA can affect any of your joints – knees, elbows, ankles, toes, fingers, or even the joints in your neck, jaw, or the ball or your foot. The smaller joints of the hands and feet are most commonly affected. When the immune system attacks your joints, it causes the tissue around your joints to swell. Your joints feel stiff, warm, and painful. This reaction is called inflammation.

 

Inflammation targets the thin, delicate membrane that lines your joints. This membrane, called the synovium, produces a fluid that lubricates the joints. When inflammation starts, white blood cells invade and attack the synovium. This causes the synovium to thicken. The synovium pushes against protective tissue like cartilage. Cells of the synovium release proteins that destroy cartilage, bones, and other nearby tissue.

 

As RA progresses, your body’s other organs may also be affected by inflammation. Because it can affect the whole body, RA is called a systemic disease. Some of the “whole body” feelings that go with RA can include mild fever, feeling very tired, having a poor appetite, headaches, depression, and stiff muscles in the morning. Your heart, eyes, skin, and other organs can be changed by RA.

RA does not affect everyone the same way. About 2 out of 10 of people have RA that only lasts a few months or years. It goes away and does not come back. About 70% have RA with “flares” and “remission.” This means their RA gets worse (it “flares”), then it gets better for a while (a remission). This happens over and over. For about 10% of people, RA get worse over time. It lasts for many years or for the rest of their lives.

Some RA Medicines BY ACCORDANT HEALTH SERVICES

Please remember to talk to your Doctor as everyone’s body is different.

Disclaimer: This is some information i took off of the CVS Specialty Site, this is NOT written in my own words. Thanks CVS Specialty for giving some insight on the Drugs some of us may or may not have to take!

DMARDs

DMARDs (dee-mards) refer to a number of medications that actually change the course of your rheumatoid arthritis. The letters D-M-A-R-D stand for disease modifying antirheumatic drug. DMARDs may reduce or prevent joint damage, preserve function, and maintain your quality of life. All people with RA should ask their doctor about DMARD therapy.

Although DMARDs are not members of a single drug family, all work by quieting your body’s overactive immune system in some way. DMARDS are most effective when you begin using them early in your treatment. But they are slow acting. Your doctor may prescribe an additional drug — such as a corticosteroid or an NSAID (see below) – to help control your pain and inflammation while the DMARD starts to work.

All DMARDs can cause stomach side effects. Because DMARDs dampen your immune system, you should always watch for signs of infection (chills, fever, sore throat, cough, etc). Report any signs of infection to your doctor as soon as possible. And, for the same reason, always talk with your doctor before getting any vaccinations while you are taking these drugs.

Methotrexate (Rheumatrex®) is one of the most effective and commonly used DMARDs. It may be taken by mouth or by injection. Many people take methotrexate with another DMARD like leflunomide, sulfasalazine, or hyroxychloroquine. If you take methotrexate, you should talk to your doctor about the vitamin supplement folate. There may be serious side effects like diarrhea, reddening of your skin, sores in your mouth and on your lips, or stomach pain. You should always report side effects to your doctor. Other effects, like hair loss and sensitivity to sunlight, may not be serious but still cause you concern. You should not take methotrexate if you are pregnant or plan to be. You should not start taking methotrexate if you have an infection. You should see improvement in three to six weeks, but the full benefit may not be noticed for twelve weeks.

Hydroxychloroquine (Plaquenil®) is taken by mouth. It usually has few side effects. You should have an eye exam within a year of starting therapy and report any change in vision to your doctor. You might notice improvement in one to two months. It may take up to six months to feel the full effects.

Azathioprine (Imuran®) quiets your immune system by interfering with your cells’ ability to make DNA. It is taken by mouth. Azathioprine can temporarily lower the number of white blood cells in your blood. This increases your chance of getting an infection. It can also lower the number of platelets, which are necessary for proper blood clotting. Check with your doctor as soon as possible if you think you are getting an infection or if you notice any unusual bleeding or bruising. Improvement may be noticed in 6-8 weeks, but you may need up to twelve weeks to get the full benefit.

Gold compounds have been used for more than 70 years to successfully treat RA. They are used less frequently now since new medications have become available. Your doctor might prescribe gold sodium thiomalate (Myochrysine®) or aurothioglucose (Solganal®) as an injection. Auranofin (Ridaura®) may be prescribed as an oral tablet. The most common side effects include oral ulcers (like canker sores), altered taste, and skin rashes. Some patients may experience an improvement after three to six months of therapy.

Leflunomide (Arava®) may be combined with methotrexate therapy. You take it by mouth. It stops your body from producing too many of the immune cells that are attacking your joints. The most common side effect is diarrhea, which occurs in approximately 20% of patients. You should not start leflunomide if you have an infection. If you are female, you absolutely must avoid pregnancy during treatment. Men who are trying to start a family should consider stopping leflunomide. Complete benefits may not be experienced until six to twelve weeks after you start the medication.

Sulfasalazine (Azulfidine®) contains the main ingredient in aspirin (salicylate) plus a sulfa antibiotic. It is often given for mild symptoms or used in combination with other drugs. You take it by mouth, and it is usually well tolerated. The most common side effects are nausea and abdominal discomfort. Make sure you tell your doctor if you’ve ever had an unusual or allergic reaction to any other sulfa-related medicines. Expect to see improvement in one to three months.

Cyclosporine (Sandimmune®, Neoral®) is sometimes used to treat people who have severe, active RA that has not responded well to methotrexate. You take it by mouth. The most common and potentially serious side effects are high blood pressure and kidney problems. Cyclosporine may take a week or more to have any effect. You may not notice maximum benefits for three months.

Cyclophosphamide (Cytoxan®) is used to treat rheumatoid arthritis only in very unusual circumstances, such as if you have blood vessel inflammation in addition to your arthritis. It can be taken by mouth or by injection. Its serious side effects include a significant reduction in the number of white blood cells, fertility problems, and increased risk of bladder cancer.

D-penicillamine (Cuprimine®, Depen®) is effective but unpopular because scheduling doses is hard. Rare but potentially serious side effects include autoimmune disease (eg, Goodpasture’s syndrome and myasthenia gravis).

Tetracycline, or minocycline (Minocin®) is sometimes prescribed if you have mild rheumatoid arthritis. Taken by mouth, it usually causes only moderate side effects like gastrointestinal symptoms, dizziness, and skin rash. Avoid minocycline if you are pregnant or nursing or in some cases of hepatitis B and C. You may notice improvement in two to three months.

Biologics

Biologics are considered a subgroup of DMARDs. They are called biologics because they are made from human genes. Biologics are quickly becoming the newest category of successful medications for treating rheumatoid arthritis. These drugs often work when other therapies have failed. In many cases they slow the progress of joint damage.

Although biologics work in different ways, they all block the action of certain proteins that contribute to the inflammation of your joints and tissues. The downside of these drugs is that they are expensive. Biologics are infused through a vein or injected, and they can have serious side effects.

TNF Inhibitors

TNF inhibitors are antibodies that block one kind of protein called TNF-alpha. They are used to treat active disease when other DMARDs have failed. TNF inhibitors may be used in combination with other DMARDs. For example, infliximab is often used in combination with methotrexate therapy. Improvement with TNF inhibitors is usually seen within 12 weeks.

TNF inhibitors weaken the immune system. For this reason, they make people more likely to get serious infection, including tuberculosis. You should be tested for TB (and any hint of infection should be resolved) before beginning therapy with TNF inhibitors.

People who take TNF inhibitors are more prone to a type of cancer called lymphoma. But RA is also a risk factor for lymphoma, so it’s not clear how many cases are due to the therapy and how many are caused by RA itself. Those with demyelinating disease should not take TNF inhibitors.

There are a few precautions you can take while being treated with TNF inhibitors:

  • Be alert for symptoms of infection (fever, chills, sweating, swollen glands in the neck, weight loss, persistent cough, shortness of breath, tiredness).
  • Talk to your doctor about vaccination against flu and pneumonia.
  • Undergo cancer screenings appropriate for your age and gender.

Infliximab (Remicade®) is delivered through a vein. The first dose is followed by similar doses two weeks and six weeks later. Infliximab is infused every eight weeks thereafter. Common side effects include infusion reactions, headache, nausea, and upper respiratory tract infections.

Adalimumab (Humira®) is injected under the skin every other week. Patients or caregivers must be able to demonstrate to their healthcare provider that they’re able to correctly inject this medicine. The Humira® Pen is a tool that makes injection easier and ensures correct dosing. Adalimumab can cause injection-site reactions. Common side effects include injection-site pain, headache, nausea, rash, high blood pressure, stomach pain, and upper respiratory tract infection.

Etanercept (Enbrel®) is injected under the skin one to two times each week. Etanercept comes in a prefilled auto injector for ease-of-use and proper dosing. Common side effects include injection site reactions, infection, headache, rhinitis, and dizziness.

Certolizumab pegol (Cimzia®) is injected under the skin every two to four weeks. Common side effects include headache, nasopharyngitis, upper respiratory tract infections, diarrhea, and sinusitis.

Golimumab (Simponi®) is a TNF blocker used with methotrexate in adults with moderately to severely active RA. It is administered monthly by subcutaneous injection. Common adverse events include nasopharyngitis, upper respiratory tract infections, increased alanine aminotransferase, injection site reactions, and hypertension.

Your doctor might prescribe one of the biologics listed below if:

  • You have moderate-to-severe RA and
  • You did not respond to one or more of the other DMARDs, like methotrexate or a TNF inhibitor.

Like TNF inhibitors, these drugs make you more prone to infection.

Rituximab (Rituxan®) is a cancer drug. It was approved by the FDA for use in people with rheumatoid arthritis in 2006. It blocks inflammation by targeting your body’s B cells. Rituximab may provide relief from symptoms for up to six months. One course of treatment consists of two IV infusions separated by two weeks. People on rituximab therapy usually take methotrexate, too.

Common side effects include fever, chills, nausea, headache, joint pain, itching, upper respiratory tract infection, swelling, and throat irritation. Rare infusion-related reactions, skin reactions, and brain infections ? some fatal ? have been reported in people who have been treated with rituximab. Talk to your doctor to make sure you understand all the risks and benefits associated with rituximab.

Abatacept (Orencia®) 29 is a medicine that targets your body’s T cells. T cells play a role in joint inflammation and destruction. Abatacept is administered through a vein. The first dose is infused over a 30-minute period. Additional doses are needed at two weeks and four weeks and then every four weeks thereafter. Meaningful improvement takes about 16 weeks.

Common side effects include headache, upper respiratory tract infection, sore throat, and nausea. In clinical trials, more cases of lung cancer and lymphoma were reported in people taking abatacept compared with those taking a placebo. Infusion-related reactions have also been reported.

Anakinra (Kineret®) targets a specific protein called IL-1, which contributes to inflammation. Anakinra is taken daily by injection under the skin. An auto-injector system is available to help make this easier. Patients or caregivers must show an ability to properly administer this medicine. Anakinra can lead to improvement of RA within two to sixteen weeks. It should never be used with TNF inhibitors.

Taking Anakinra can make you more likely to get infections and lymphoma. Reactions at the site of injection are common. These include inflammation, pain, redness and bruising. Other common side effects include headache, nausea, diarrhea, joint pain, flu-like symptoms, and stomach pain. Taking anakinra makes you more prone to infection and lymphoma.

Combination therapy

Sometimes drugs are more effective when they can work together. For example, some people with RA respond to a combination therapy using one of the newer biologicals and a standard DMARD, such as methotrexate. Here are just a few other drug combinations that have worked:

  • For some patients resistant to DMARDs, rituximab is effective when taken with methotrexate.
  • Starting treatment with corticosteroids before you take rituximab may make the first dose more tolerable.
  • Abatacept combined with methotrexate is effective in those who do not respond to methotrexate alone or TNF inhibitors.
  • A combination of the TNF inhibitor adalimumab plus methotrexate was found to work better than either adalimumab or methotrexate alone.

Costicosteroids

Corticosteroids (kor-ti-ko-stir-oid) include some of the most effective and fastest-working drugs for treating your RA. But they also can do great harm by causing brittle bones, cataracts, and elevated blood sugar, to name a few. To minimize your side effects, your doctor may prescribe low-dose steroids for as short a period of time as possible. Usually doctors recommend combining steroids with DMARDs ? or replacing the steroids altogether.

Pain Relievers

Analgesics (a-nl-je-ziks), like acetaminophen (Tylenol®) and codeine, are used just for pain relief. They do not treat or improve your RA. Although acetaminophen is relatively safe and inexpensive, high doses can be toxic. Avoid taking over-the-counter (OTC) acetaminophen when your doctor has prescribed drugs that combine acetaminophen and opioids like Percocet® and Darvocet®.

NSAIDs

NSAIDs (en-seds) are the most commonly used drugs for treating RA. The letters N-S-A-I-D stand for nonsteroidal anti-inflammatory drug. Examples include aspirin, ibuprofen, and naproxen sodium. NSAIDs relieve pain and help reduce your joint inflammation. But they can cause serious side effects, like heart and blood vessel disease, stomach upset, and gastrointestinal bleeding.

People who take NSAIDs on a regular basis may develop stomach ulcers. Between 1-2% of regular NSAID users experience bleeding, tearing or blockage of the intestines. NSAIDs also increase the chances of having a heart attack or stroke. If you already have heart disease, you’re at higher risk

Risk Factors for Complications

Some people are at higher risk of NSAID-related problems such as heart attack, stroke, ulcers or bleeding. Factors that you should consider include:

  • Older age
  • Longer use
  • Existing heart disease
  • A history of stomach problems, ulcers or gastrointestinal bleeding
  • Use of certain other medicines, such as corticosteroids, the anticoagulant warfarin, or the osteoporosis drug, alendronate
  • Smoking
  • Consumption of excessive amounts of alcohol
  • Infection with the H. pylori bacteria

Preventing Complications

There are several ways to reduce the risk for NSAID-related problems. Your doctor and Accordant nurse can help you find a strategy that is best for you. Possible options include:

Disease-modifying anti-rheumatic drugs (DMARDs)

NSAIDs help relieve pain but they do not slow the progression of RA. DMARDs slow and sometimes stop progression of the disease. Better control of the disease process helps reduce pain. Less pain means less need for pain medicines such as NSAIDs. Talk with your doctor if you are not currently using a DMARD.

  • Alternative pain management strategies
    Ask your doctor or Accordant nurse about alternative pain management strategies that may lessen your need for NSAIDs. Many alternative therapies such as exercise, focused relaxation, visualization, and meditation have been found to be effective in helping control pain.
  • Medicines that lessen the risks associated with NSAID use
    You and your doctor may decide that an NSAID is the best method for controlling your pain. If you have risk factors for stomach-related NSAID problems, you should discuss using a medicine to lessen the negative effect of NSAIDs. Proton-pump inhibitors reduce the amount of acid produced in the stomach. This lessens the risk of ulcers. Misoprostol is another medicine that prevents NSAID-induced ulcers.
  • Ask your doctor if you should take a medicine to prevent stomach ulcers or intestinal bleeding.
    In some people, regular use of NSAIDs can irritate the stomach and cause blood loss. This can result in anemia (lower numbers of red blood cells). This condition can be detected by a blood count test. Talk with your doctor or Accordant nurse about tests to monitor for NSAID-related problems.
  • Other
    • Take your NSAID with food
    • Use the lowest dose possible
    • Take for the shortest time needed
    • Take exactly as your doctor prescribes

There are many kinds and combinations of successful drug therapies available to treat your rheumatoid arthritis. If your medications are not working, remain positive. Take an active role. Remember that your body is unique.

Above all, talk to your doctor. Explain what works and what doesn’t. Your doctor may prescribe several different drugs before finding the best treatment course for you. The sooner you and your doctor find the right drug combination, the better.

Eyes WIDE open

So this post was originally going to be about something a little different. But I feel the need to change it after yesterday’s events.  First off this is MY blog and I write what I want.  I blog about MY journey through this thing called life. My life the one I live daily with a chronic terminal disease. If for some reason I offend you with anything I write, I can help you solve your problem…..STOP reading my blog. It is that simple. Do not waste YOUR life on something that doesn’t make YOU happy.  Trust ME life is way too short to  waste time on this, so I will write a “moving on” paragraph and do just that MOVE ON. Did you forget I am on Borrowed time as it is!

I have had a day to think about how I would put out a FIRE I did NOT start and then it hit me like a brick….this isn’t my problem, it is yours, the person pointing their finger at me, the person attacking with their words,  the person throwing accusations, the person making something out of nothing.  I have NEVER ever been treated SO RUDE in ALL my life and if you have read my story of what I have lived through and AM STILL living through that says A LOT. It just reminded me that just because you come from a “certain” home and or lifestyle…YOU ARE NO DIFFERENT THAN I AM. We are ALL SINNERS. WE are all GOD’s Children. Why I put some of you above me, I have no idea. Maybe it was because I so desperately needed to know that there IS something better than I have ever known. Meaning if I just surround myself with people who have lived a more secluded life(for lack of a better phrase)( an entire life surrounded by the word of God) that maybe your eyes have not been clouded with as much hate or suffering I have seen and due to that, might treat people differently. But now I see this was Wrong of ME. I put you on a pedestal, someone I could learn from. I know no one is perfect but it was nice looking up to some people I “thought” were pretty close to it.

Do me a favor, push your judgments aside for a minute and realize that all of this could have been avoided if someone just PRIVATE MESSAGED ME and asked what I was talking about, instead of attacking me. I have spent a day trying to explain why people of my church (the ONES I SPEAK SO HIGHLY OF) treat me like that. I never in a MILLION years would think I would have to defend those I love over my own blood.  My church has been the family that I have so needed, so to be attacked like that was such a rude awakening. I have prayed about this and right now I just do not know where I stand with anything. I have ENOUGH on my plate; I don’t need more negativity or some of my “family” lashing out at me AGAIN over NOTHING. What if I were to do something really BAD…what then, how would I be treated then?????  While I am being OPEN about stuff please know that I will never be the person some of you want or wish I would be. I am not the dress wearing, no tattoos, no scars, no cursing, perfect in the corner minding my business person. Outside my health, I have lived a very HARD life.  But know that God loves me just the same as he loves you.  “The Lord directs the steps of the Godly. He delights in every detail of their lives. Though they stumble they will NEVER fall, for the LORD holds them by the hand. “Psalm 37:23-24 So with that said, I am moving on because NONE of this is worth any more of my spoons.

Lately I have been pretty busy getting ready to go on vacation. I know I have already gone over the “spoon theory” so I am sure you can imagine just how much I did and didn’t get done.  This is the first big vacation since I have been diagnosed, due to this I started over a week ago planning an hour a day to pack at least one to two things. This worked for a few days until chemo med day came along. I don’t know what has been going on lately but my meds have been kicking my buns. I guess that is Chemo drugs though; they don’t care how they make you feel.  So these last few days have been a lot of what I call HELL days. The only decent day I had was at my Friend Shannon’s house. I so love having such loving friends like her and Jodi. They both knew I didn’t feel great but we had an amazing time making church cards. It has been awhile since I laughed like I did on Friday. I love when some of the ladies and I get together and do stuff. I know I am safe and I can just be me. They are the sisters I don’t have, another gift God gave me! I just wish my body gave me more time to do those types of things. I really love the time i have with others. Time is so precious. Thanks ladies!!!! Then I worked on Sunday.  I really enjoy that time out of bed doing something for me, Even though my body makes me pay for it later. 😉 Yesterday I finished getting most of the motorcycle packed and then did a small 20min ride. I wanted to make sure we didn’t over pack the bike, because that would be a bad thing. Then I came home to find a mess on my Facebook and then I wasted a lot of spoons being upset over nothing I did. I might seem tough on the outside BUT I do have feelings and yesterday they were hurt.  I  find that instead of attacking back especially in anger that I have to do something else positive so I decided to put my spoons into putting up a post for an amazing lady named Nicole. If you haven’t had a chance to read her post yet (you can find her post in “inspiring stories”), please do so. Her story inspires me and she is an awesome author! I find so much encouragement from others like her and it helps me get through some tough days. Living in constant pain, living second to second, being afraid is hard, but I am not alone with others like her in my life. Sorry we are both sick Nicole but THANKS for joining me on this journey! Today was a rather busy day as I had a Dr apt and I had a great surprise as several ladies from Church came to see me and many people sent me texts and notes. I love when I turn around in times of need and see some people standing strong behind me. It isn’t about sides, it’s about the real love they have for me, no matter what I am going through or doing, they just see ME.

 

 

Verse of the week

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