Life with RA..........................................................It is awesome, and a pain in the ass!
If I can tell you one thing and one thing only.....................................................IT IS GOING TO BE OK! I REPEAT, IT IS GOING TO BE OK!
Go ahead and cry, feel sorry for yourself, yell, complain, demand. Then suck it up and get to living. This isn't cancer, it isn't MS, you are not terminal. Will you have struggles, shit yeah! But, they are manageable. You can make changes to make things easier, or not. You can be a victim, or be a warrior. It is your choice.
RA Has added some shit to my life, but it has added good to. What the hell is good about RA you ask?
1. I am more EMPATHETIC to people with pain, walkers, canes, and the elderly
2. I actually LISTEN to my body and give it nice things like vitamins, pro-biotics, veggies, spa days, massages, and rest
3. I am more GRATEFUL. I appreciate every bike I can ride, mountain I can hike, trip I can take, morning I wake without pain and so much more!
4. I realize it could always be worse. ALWAYS! Never ever forget this. I see elderly women in the hospital who didn't have the meds we do and they are in rough shape. It is heart breaking. Appreciate where you are, it could always be worse.
5. I take BETTER CARE to avoid being sick. It is hard being a nurse, I see a lot. I have seen RA illnesses I didn't even know existed. I wont mention them but they are there. Take care of yourself best you can. Your life literally depends on it!
6. I am fucking SCARED and it is ok. It is ok to be worried, it would be weird if you weren't. But don't let fear consume you, or stop you from living. Acknowledge it then move on. Feelings are not facts.
So live big my friends!
Go ahead and cry, feel sorry for yourself, yell, complain, demand. Then suck it up and get to living. This isn't cancer, it isn't MS, you are not terminal. Will you have struggles, shit yeah! But, they are manageable. You can make changes to make things easier, or not. You can be a victim, or be a warrior. It is your choice.
RA Has added some shit to my life, but it has added good to. What the hell is good about RA you ask?
1. I am more EMPATHETIC to people with pain, walkers, canes, and the elderly
2. I actually LISTEN to my body and give it nice things like vitamins, pro-biotics, veggies, spa days, massages, and rest
3. I am more GRATEFUL. I appreciate every bike I can ride, mountain I can hike, trip I can take, morning I wake without pain and so much more!
4. I realize it could always be worse. ALWAYS! Never ever forget this. I see elderly women in the hospital who didn't have the meds we do and they are in rough shape. It is heart breaking. Appreciate where you are, it could always be worse.
5. I take BETTER CARE to avoid being sick. It is hard being a nurse, I see a lot. I have seen RA illnesses I didn't even know existed. I wont mention them but they are there. Take care of yourself best you can. Your life literally depends on it!
6. I am fucking SCARED and it is ok. It is ok to be worried, it would be weird if you weren't. But don't let fear consume you, or stop you from living. Acknowledge it then move on. Feelings are not facts.
So live big my friends!
Ok, so you have RA, what's next?
Find the best doc...and I mean the absolute best! I made the mistake of letting the first schmuck I met examine me, even though I knew the minute I walked in his office things were not going to work This guy was so bad he eventually had legal troubles due to his medical practice. Trust your gut. You should look for a doctor like you do a partner. Make sure She/he not only says all the right things but does them too! I luckily found a wonderful Rheumatologist on my second try. Don't give up!
RA...A Sometimes Invisible Disease...........
It is 10 am and I still cant get out of bed. My boyfriend rambles off a list of things that need to get done. This is just going on top of the list of stuff I already had sitting around for two weeks. I am exhausted. My right ankle feels like it is in a vice grip and my whole body feels like it is stuffed in a blood pressure cuff. Who gives a sh@t about dishes!!! But, he doesn't always get it. I look fine. My hands are not swollen today, there is no redness, I am not puffy, I am just in pain, which is sometimes not enough for the outside viewer. I am trying to learn to be patient with others, not everyone can understand what it is to have RA.
>>>How do you help your loved ones understand your RA pain?<<<
>>>How do you help your loved ones understand your RA pain?<<<
Does your bed suck???
One of the first things I decided to do when I found out I had RA was buy a new bed. I spent a few weeks going back and forth over the high price, really $1500 for a bed??? I could take a two week vacation for what a new bed was going to cost me!!! But the adult in me decided a new bed was smarter than 2 weeks in Mexico. I bought a Resteva. This is a generic version of the Tempurpedic and it is awesome! I don't wake up nearly as achy in the morning and sleep much more sound than I had before.
*****One of the most important things for those of us with RA is a good nights sleep, get a good bed!!!*****
*****One of the most important things for those of us with RA is a good nights sleep, get a good bed!!!*****
Cruising for a boozing..........
During my younger days I could throw them back with the best of them, but those days are behind me. Now that I have RA and am on quite a few different meds, I find drinking is no longer a good idea. The most I can do is two glasses of red wine on the the most special of occasions. We have weak immune systems and alcohol does not help. So, my friends.......Booze with care.
Note: Milk Thistle is an awesome supplement for the liver! Our meds do enough damage, so if you want to take an extra precaution I say, milk thistle it up!
Note: Milk Thistle is an awesome supplement for the liver! Our meds do enough damage, so if you want to take an extra precaution I say, milk thistle it up!
It is pretty expensive to be sick............
I found this out fast! When I was diagnosed with RA I was a student who worked as a bartender a few days a week. So, it is safe to say I was poor. It was hard enough before I got sick, but nothing prepared me for what was to come. Now, I did have student insurance that was required for nursing school, and let me tell you it was a miracle. But even with insurance, my medical bills were piling up fast. I started to panic, between student loans, books, groceries, gas, supplements, medications, and insurance I was stressed to the max. I decided to write everyone I owed money. I drafted a letter explaining my situation and asking for help. After much negotiating I was able to pay $10 a month until this bill is paid in full. So, if you are feeling the stress of mounting debt, do not avoid it.
Working as a nurse I have seen what can happen when you avoid medical bills, it is devastating for many. Always reach out to billing and negotiate a repayment schedule no matter how small the amount you can afford. More often than not they are happy to work something out. It sucks to be sick and worrying about money, I totally get it. And health care costs are out of control. I can not stress this enough, DO NOT AVOID IT. You will only feel more stressed and have less negotiating power when you finally do address them.
Working as a nurse I have seen what can happen when you avoid medical bills, it is devastating for many. Always reach out to billing and negotiate a repayment schedule no matter how small the amount you can afford. More often than not they are happy to work something out. It sucks to be sick and worrying about money, I totally get it. And health care costs are out of control. I can not stress this enough, DO NOT AVOID IT. You will only feel more stressed and have less negotiating power when you finally do address them.
Stress.............
Breathe, just breathe............ Stress is terrible for your body, with or without RA. But, with RA there are more visible consequences to stress. Mine is generalized pain and malaise. It is hard to change your thought process, to not get upset by things that used to send us through the roof. I will try to not yell at my husband for the 1093871029348710923847109 times he did not pick up his clothes, to not get upset when my cable bill comes with added fees, no frowning when payday comes the same time as an overdue medical bill, or beating myself up over not doing enough. When you are sick it is hard to do anything and we tend to feel extra sensitive. We need to learn to relax and breathe easy.
Try and give yourself a break, and learn from the challenges that come your way.........and maybe get a pedicure:)
Try and give yourself a break, and learn from the challenges that come your way.........and maybe get a pedicure:)
Medication Time..................
So what are you taking???
Before meeting with my RA Doc I was pretty worried about what medications I was going to have to take. Should I take them? Should I go holistic? Are the risks worth it? How will I tolerate the side effects????????
I was initially on 40mg of Prednisone daily and Methotrexate once a week. From what I had been reading, I was pretty sure I was going to blow up to the size of a compact car and never get out of bed, but the the side effects were initially minimal. On the days I took methotrexate I was tired and would have some GI issues. Otherwise my most noticeable side effects were heart palpitations, ringing in the ears, moodiness, and nausea. The longer I was on Prednisone the worse side effects became.
Later I was started on Enbrel injections. I hated those, HATED. But a surprise cancer diagnosis led to my oncologist stopping the Enbrel immediately. Because of being taken off Enbrel I was put back on Methotrexate. That worked for awhile but I eventually found the side effects intolerable and took a more holistic approach to my treatment.
I am currently not on any medications officially. I take Prednisone for flare ups only. Otherwise, I manage my illness holistically. Only you can decide what treatment is best for your. Take the information your Rheumatologist gives you, layout your options and decide from there.
This does not mean I may not go back on meds some day. But for now, this is my program and it is going fine:)
Before meeting with my RA Doc I was pretty worried about what medications I was going to have to take. Should I take them? Should I go holistic? Are the risks worth it? How will I tolerate the side effects????????
I was initially on 40mg of Prednisone daily and Methotrexate once a week. From what I had been reading, I was pretty sure I was going to blow up to the size of a compact car and never get out of bed, but the the side effects were initially minimal. On the days I took methotrexate I was tired and would have some GI issues. Otherwise my most noticeable side effects were heart palpitations, ringing in the ears, moodiness, and nausea. The longer I was on Prednisone the worse side effects became.
Later I was started on Enbrel injections. I hated those, HATED. But a surprise cancer diagnosis led to my oncologist stopping the Enbrel immediately. Because of being taken off Enbrel I was put back on Methotrexate. That worked for awhile but I eventually found the side effects intolerable and took a more holistic approach to my treatment.
I am currently not on any medications officially. I take Prednisone for flare ups only. Otherwise, I manage my illness holistically. Only you can decide what treatment is best for your. Take the information your Rheumatologist gives you, layout your options and decide from there.
This does not mean I may not go back on meds some day. But for now, this is my program and it is going fine:)
Pain, Pain, Go Away.......................
Now that I have RA, some of the most common of tasks can be painful. Typing, biking, sitting to long, standing too long, carrying heavy objects, and on and on and on. It is frustrating to be active and have to take breaks in between certain activities. It is difficult to put your pride to the side and realize when you need to take it easy on your body. It is depressing to not feel well. I walk a fine line between feeling great and feeling beat down. I am learning to bring myself up through exercise, travel, hiking, biking, being kind to others, or doing anything that makes me feel good. And sometimes what makes me feel good is bad for me (enter cake). Balance my friends:) So, if you a hurting today, soak your feet in a warm pedi tub, Spend too much at Whole Foods, order dumplings, wrap up in a warm blankie, and just do what feels good in this moment.
Tell Me, How Do You Deal With Pain????????
Tell Me, How Do You Deal With Pain????????
"ROID RAGE".........................
Oh, Prednisone........... How I loved you from the start. It was only a few short days after meeting you that you took away the swelling in my hands, the inflammation in my chest, and gave me some much needed energy. But now it is time to part ways. I am slowly getting you out of my life. I look like a puffer fish and want to punch everyone in the face that walks by. I go from happy to angry in seconds. My co-workers think I am crazy and I am probably a few short weeks away from being single. I am sure my husband doesn't appreciate being yelled at for folding laundry the wrong way or because I didn't like how he combed his hair. Maybe if I don't see you as often things will be better?
Immunizations................
Ok, here is the deal with immunizations. Please keep in mind that it varies from person to person. One thing that is the same for all of us is.............STAY AWAY FROM LIVE VIRUSES! For instance, if you get the flu shot, make sure it is the shot and not the nasal spray which is a live virus and will send your immune system out of whack. No one wants an unhappy immune system. Shingles are another live virus you want to keep away from. Currently I have gotten he Hep B, Flu and Pneumonia vaccines. As a nurse we pretty much have to get every vaccination in the books. Stay healthy peeps!
It is broken...............
|
So September 2018, two days before my contract ended in San Francisco I broke my foot. I wanted to take a bike ride through the city one last time. It was stupid really. I had to stop fast and when I put my foot down I rolled it and heard the snap. DAMN IT! My poor husband had to pack up the whole apartment, load the car, and drive to New Mexico with me in tow. We had a shower chair, knee scooter and crutches tied to the roof of my car, we looked like the Beverly hillbillies. My next contract was about to start and a broken foot was not going to keep me down. Luckily I had worked in Santa Fe before and the manager was very accommodating. I could not put any weight on the foot till January and was using a knee scooter to get around. So, here is the thing about bones, when you are older they heal slooooowwww. And I learned from my podiatrist when you have RA they can heal even slower. And it was true. I was not walking normally until February! It sucked. Looking back I am glad I did not push my doc to do surgery because she gave me the option. But it felt like forever. The lesson here.........................try not to break anything. If you do, be patient, it will take awhile.
|
Loving someone with RA.................
One of the most frequent emails I get from you lovely people is about your partner and RA. Sometimes it is from the person with the illness voicing how no one understands. And sometimes if is from a loved one who wants to know how to better support their loved one. Both can be hard. Hopefully this helps.
"I AM SICK AND HE/SHE JUST DOESN'T GET IT"........
These emails break my heart. I have been there. When I was first diagnosed with RA my boyfriend at the time was mildly supportive to not present at all. This was the hardest time for me. I was still learning how to live with this disease and nurturing him was not part of that program. What I needed was patience, empathy, support. What I got was the opposite. Now to be fair, he just wasn't the right fit for me. But that is hard to realize after investing 5 years in the middle of a chronic illness while in nursing school. Lucky for me we ended the relationship after I was doing better. Not to say a break up is not hard but it would have been worse while I was still mid flare. Now, I know leaving someone is hard. We are not all in the position emotionally of financially. But I cannot stress this enough, if your partner is making it worse, for your health, you must devise a way out. It is scary, your mind starts to think they worst. Will I be alone forever, who will love me, I don't want to date again, who will help at home.......... The smartest thing I did during my bad relationship was start working on a way to totally independence. Slowly I started putting things in my own name, saving money, and going to school. So when the time came I was set. Take a step back and weight your options. Trust your gut, it will not lead you astray.
"I KNOW MY PARTNER IS SICK BUT IT FEELS LIKE HE/SHE JUST DOESN'T TRY ANYMORE"..............
Now, I have also heard from frustrated partners that just want to make it work but feel overwhelmed and hopeless. They love their partner but take on all the load. Working, cooking, managing kids, house cleaning, etc. This is too much for someone to manage alone. Even though we are in pain I feel it is important to try and help. It is easy to let our partners take control when we are sick but this can eventually lead to resentment. Personally it is rare I am in a flare or condition that does not allow me to contribute in my relationship. But for the times I am down longer than normal I make any little effort I can. This shows my partner I am trying. A little gesture can go a long way. Something as small as making the bed, going for a short walk together, or cooking an easy meal. We expect empathy from our partners but we must give that in return. Not everyone is lucky to find someone that is caring and supportive, be sure to thank that person in your life, It will go a long way.
"MY PARTNER HAS RA, HOW CAN I SUPPORT THEM"........
I remember the first time I got an email from the husband of a woman with RA. He was very concerned and loving. He just wanted to know how to help when he felt so helpless. I was floored. What an amazing human to reach out for help. That gesture alone spoke volumes to his character. I would go on to get similar emails and every time if brought a glimmer of joy to my eye. If you are even seeking the answer to that question I imagine you are already doing a great job. It is hard to give a one size fits all answer. I know when I am not feeling well I appreciate patience, an electric blanket and a foot rub. Usually, during these times my husband will cook or take care of any chores they may need to be done. A simple "do you need anything" can be enough. Eventually my husband learned when I was in pain and knew how to help. We have a rhythm to a flare. It is challenging for any person to be diagnosed with a chronic illness and your loving patience is more than enough:)
"I AM SICK AND HE/SHE JUST DOESN'T GET IT"........
These emails break my heart. I have been there. When I was first diagnosed with RA my boyfriend at the time was mildly supportive to not present at all. This was the hardest time for me. I was still learning how to live with this disease and nurturing him was not part of that program. What I needed was patience, empathy, support. What I got was the opposite. Now to be fair, he just wasn't the right fit for me. But that is hard to realize after investing 5 years in the middle of a chronic illness while in nursing school. Lucky for me we ended the relationship after I was doing better. Not to say a break up is not hard but it would have been worse while I was still mid flare. Now, I know leaving someone is hard. We are not all in the position emotionally of financially. But I cannot stress this enough, if your partner is making it worse, for your health, you must devise a way out. It is scary, your mind starts to think they worst. Will I be alone forever, who will love me, I don't want to date again, who will help at home.......... The smartest thing I did during my bad relationship was start working on a way to totally independence. Slowly I started putting things in my own name, saving money, and going to school. So when the time came I was set. Take a step back and weight your options. Trust your gut, it will not lead you astray.
"I KNOW MY PARTNER IS SICK BUT IT FEELS LIKE HE/SHE JUST DOESN'T TRY ANYMORE"..............
Now, I have also heard from frustrated partners that just want to make it work but feel overwhelmed and hopeless. They love their partner but take on all the load. Working, cooking, managing kids, house cleaning, etc. This is too much for someone to manage alone. Even though we are in pain I feel it is important to try and help. It is easy to let our partners take control when we are sick but this can eventually lead to resentment. Personally it is rare I am in a flare or condition that does not allow me to contribute in my relationship. But for the times I am down longer than normal I make any little effort I can. This shows my partner I am trying. A little gesture can go a long way. Something as small as making the bed, going for a short walk together, or cooking an easy meal. We expect empathy from our partners but we must give that in return. Not everyone is lucky to find someone that is caring and supportive, be sure to thank that person in your life, It will go a long way.
"MY PARTNER HAS RA, HOW CAN I SUPPORT THEM"........
I remember the first time I got an email from the husband of a woman with RA. He was very concerned and loving. He just wanted to know how to help when he felt so helpless. I was floored. What an amazing human to reach out for help. That gesture alone spoke volumes to his character. I would go on to get similar emails and every time if brought a glimmer of joy to my eye. If you are even seeking the answer to that question I imagine you are already doing a great job. It is hard to give a one size fits all answer. I know when I am not feeling well I appreciate patience, an electric blanket and a foot rub. Usually, during these times my husband will cook or take care of any chores they may need to be done. A simple "do you need anything" can be enough. Eventually my husband learned when I was in pain and knew how to help. We have a rhythm to a flare. It is challenging for any person to be diagnosed with a chronic illness and your loving patience is more than enough:)
