Dancing in the Rain ™

It's not about waiting for the storm to pass, it's about learning to dance in the "RAin" when you live with Rheumatoid Arthritis and other Chronic Diseases.

Difficult days…

As most of you have noticed by now, I have not been posting on my blog for a while now. Just shortly after my last post in March of 2013 I began the most difficult journey health wise that I could ever imagine. I had been fighting the effects of severe Gastroparesis and was only able to eat about 300 calories a day at most for months. Gastroparesis is a horrible disease that causes paralysis of your stomach and makes it impossible to eat and even drink to keep yourself alive. I lost 100 pounds in about 6 months time (although I continue to lose and have lost over 130lbs so far now) and I was too weak to stand or even get out of bed. Because of the autoimmune diseases, gastroparesis and severe malnutrition for an extended length of time, I ended up in a very critical situation where I could not breathe or even stand on my own. I was rushed to the ER in April after having a very scary attack of some kind where I couldn’t move or speak. I was sent for multiple tests. They found six large pulmonary embolisms in my lungs. My doctors said I was lucky to be alive. Had one of those clots gone into my heart or brain, I would not be here today. They immediately admitted me to the hospital to get me started immediately on blood thinners and injectable medications.  But the tests also showed how extremely malnourished I had become over the months and that my body had shut down and was in starvation mode. Due to the severity of the gastroparesis and the fact there is no cure or medications that could help me, I was sent into surgery to have a GJ tube (a kind of feeding tube) permanently implanted into my stomach with a long tube passing down into my intestines. The tube allows me to bypass my paralyzed stomach (where food can sit for days and actually rot before being processed) so that I could get all my calories and nutrition by special formula pushed into my feeding tube by an external pump. Some day when I have more energy and ability, I will post photos and more details of my story. But since April of 2013, I have been fighting every day just to stay alive And out of the hospitals. I cannot eat anymore, except for a few bites of some soft foods or liquids (applesauce, Gatorade, etc). I’m am connected to a feeding pump almost 24 hours a day because I’m having problems with my body accepting the formulas, and it causes great pain. Every day is a struggle. I’m bed bound most of the time, but work daily at trying to take small steps around the house or use my electric wheelchair which helps me get around easier when I am up to it. Living with severe Gastroparesis is like living every day of your life, 24/7 with the stomach flu or food poisoning. It is a terrible and awful disease to live with and manage and many people die at such an early age because there’s still so much unknown about the disease. I still fight with multiple autoimmune diseases on top of the Gastroparesis (Rheumatoid Arthritis, Primary Biliary Cirrhosis/Autoimmune Hepatitis, Fibromyalgia, etc). And the doctors believe these diseases are what caused the Gastroparesis.

And so, my friends, this is why I have been so absent lately with my posts. I am grateful to be alive but every day it takes every ounce of strength just to get thru the day. And with so much exhaustion, complicated by so many medications and side effects, it makes it almost impossible to write. I have so much I want to tell you all, share these experience with the world…but there just isn’t enough of me to do it all right now.

If you want to follow me and see some of my adventures and updates, please feel free to follow me on Twitter @RA_Dancer or on Facebook at http:/www.facebook.com/idanceintherainwithRA

I hope to see you all there and thank you so much for everyone friendship and support!












Love Yourself

“Treat yourself as if you were your own best friend.”

I think when we live with chronic illness and pain every day we often tend to be hard on ourselves for not being able to do everything we want or used to be able to accomplish in our days. I know I get frustrated at my own inability to help with housework or cooking or just being as social as I used to be. But we have to be gentle on ourselves and realize the battle we fight every day just to maintain some form of normalcy in our lives takes an amazing amount of courage and strength. We need to give ourselves credit for what we can accomplish as well as provide ourselves with gentle, positive ways to push through and always try for a little more. Some days we win and we celebrate those small victories. On days we miss our target, we regroup and build up the courage and strength to try again tomorrow. But we must always find a way to love ourselves and believe that we are good enough, we are worthy and we are deserving of love as well.


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis (RA), Gastroparesis (GP), Primary Biliary Cirrhosis (PBC), Fibromyalgia (FM). I do live with others as well (like asthma, hypothyroid, etc), but these are the main diseases that cause me chronic pain, fatigue and illness every day.

2. I was diagnosed with it in the year: RA-2006, PBC-2008, GP-2012, FM-1989

3. But I had symptoms since:  RA-2005, PBC-2007, GP-2010, FM-1986

4. The biggest adjustment I’ve had to make is: Leaving my career, moving to full time disability, and losing so much of my independence.

5. Most people assume: When people who don’t know me look at me they can’t see my multiple illnesses. Even though I use an a electric wheelchair or a cane/walker, people tend to assume I’m just lazy or overweight, and not really sick.

6. The hardest part about mornings are: Getting out of bed and preparing for the day. I usually sleep very late as I can’t function on less that 10-12 hours of sleep a day.

7. My favorite medical TV show is: I don’t usually watch medical shows. I prefer cooking shows or things that lighten my mood.

8. A gadget I couldn’t live without is: My iPad. It’s become too difficult to use a laptop, keyboard and mouse but my iPad keeps me connected to the world since I am very housebound due to the illnesses. I can type with two fingers even when my hands are locked from RA.

9. The hardest part about nights are: Getting a good night sleep. I have always had sleep problems and my brain likes to think and obsess as soon as I turn off the light. Pain and nausea often make it hard to sleep well too.

10. Each day I take approximately 30 pills & vitamins (plus injections, pain patches, etc).

11. Regarding alternative treatments I: believe they can help make a difference in daily life, even if they can’t cure a disease. I think we should always be open to new ideas and alternative treatments to help us out when we are sick.

12. If I had to choose between an invisible illness or visible I would choose: I’m not sure ANY illness is a good trade for any other illness.

13. Regarding working and career: I miss my career and I miss working. So many people think, “oh it must be nice to be home and not have to work.” Sure, it would be if I was healthy, active and won the lottery. But living on a partial salary, not being able to take care off yourself, go places you want or see friends and family is awful. Not to mention that being sick IS a full time job all in itself just trying to keep yourself as healthy as possible and all your medical appointments, doctor visits, medical bill paid, etc in order. I would give just about anything to have my life and career back and be able to work again.

14. People would be surprised to know: Even if I look like I am doing okay, I am still hiding large amounts of pain and sickness from you. I do my best to look as normal as possible for you so that you aren’t uncomfortable being around me. Creating that facade means that I load up on many medications before I go out to see you and when I come home, I’m exhausted from the energy it took to keep it up while we were together. This is a habit I will probably never be able to stop.

15. The hardest thing to accept about my new reality has been: losing my independence. I used to be the girl who could do anything, take care of everyone and never miss a beat. I  can’t even take a shower or brush may hair most days without help anymore. It’s incredibly difficult to have to rely on others for help all the time.

16. Something I never thought I could do with my illness that I did was: I started to write… And when I started to write, I started connecting with other people living with chronic illness. And the emails and notes that I get from people telling me that I made them feel like someone understood, that they weren’t alone, warmed my heart and made me feel like despite being so sick and not being able to do much, I could still reach out into the world through my words and make a difference in someone else’s life.

17. The commercials about my illness: drive me crazy! Particularly the RA ones. They say to the world, “just take a shot and your problems are solved and you can climb mountains!” But they don’t talk about what happens when their drugs stop working and the fact that even though we talk these nasty drugs and chemotherapy medications that cause horrible side effects… NONE of them stop the progression of RA, they just slow it down. So if you have aggressive RA, like I do, the medications can help but the disease continues to destroy your joints and your body a little bit more every day. And if you’re like me and all the medications stop working, then life becomes pretty unbearable while RA continues to push through you eating your joints up. Living with any disease is not as easy as the pharmaceutical companies make it look, no matter what disease they are advertising.

18. Something I really miss doing since I was diagnosed is: being able to spend fun time  going out with my husband and my friends and family. Being chronically ill is a very lonely thing to live with every day.

19. It was really hard to have to give up: my spontaneity, my independence and my hobbies. I try to find new ways to do things, bit I really miss not being able to just say “hey I want to do X” and get up and do it. With chronic illness everything has to be planned so that you can maximize what little energy or abilities you have that day. And even then I find so many things are still not possible with such a broken and tired body.

20. A new hobby I have taken up since my diagnosis is: I have found I can paint and/or draw digitally with just one finger on the iPad. I’ve really enjoyed experimenting and creating new kinds of artwork. My first digital painting is even being sold as a “collector card” to help raise money for RA research and awareness. I can’t do it every day, but it’s still a new way to express myself when I am feeling up to it.

21. If I could have one day of feeling normal again I would: spend the whole day going out and doing fun things…maybe go to Disneyworld or something where I could just walk, run, play and have fun and use up all that glorious energy while spending time with my husband and friends and family.

22. My illness has taught me: that despite how sick I am and how much of my life and myself I have lost to these diseases, I still can find positive things to do and ways to smile every day. You can still find happiness with chronic, severe illness…. You just have to work a little harder at it than before.

23. Want to know a secret? One thing people say that gets under my skin is: I think I am most frustrated by people who say “I sure hope you’re feeling better by now” but they don’t mean it in a friendly way, they mean it as if to say “your illness really annoys me, so I hope you’re feeling better by now so I don’t have to deal with it anymore.” It doesn’t take long to figure out who cares and who finds your illness “annoying.”

24. But I love it when people: do something to show me they care. It could be a note or email, a small gift or even just a phone call to say “I heard you were having a rough time and I thought I’d call to cheer you up.” It doesn’t take much to make someone feel loved or cared about, but true friends will find a small way to let you know.

25. My favorite motto, scripture, quote that gets me through tough times is:

“I believe that if, at the end of it all, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. To make others less happy is a crime. To make ourselves unhappy is where all crime starts. We must try to contribute joy to the world. That is true no matter what our problems, our health, our circumstances. We must try. I didn’t always know this, and am happy I lived long enough to find it out.”   - Roger Ebert

26. When someone is diagnosed I’d like to tell them: Do your own research, learn about your disease, you are your best advocate. Learn everything you can and never take no for an answer. If a doctor doesn’t seem to care or listen, find another. There are always more doctors and the good ones will make you feel good when you leave their office, even if it’s a bad prognosis or checkup. And as for you, don’t give up…find your own path to happiness. It may be a different path than you originally thought and you may have to swallow your pride a bit and try new things, but you CAN find peace and happiness within your new life with your illness. It just takes a good bit of work and a lot of hope. They come up with new treatments every day. Today may not be your lucky day, but another day soon just might be. So hold on and don’t ever give up. And never, ever lose hope.

27. Something that has surprised me about living with an illness is: how strong you find you are when you have no choice except to BE strong. And also that being an optimist never goes away, even when you’re sick, depressed and falling apart…there’s still a small piece of that hope in there somewhere, you just have to find it and nurture it to make it grow again.

28. The nicest thing someone did for me when I wasn’t feeling well was: So many things! I’ve received care packages from friends. My mom cooked a Christmas dinner that was all Gastroparesis friendly so I felt normal for a night. My husband just loving me and taking care of me and the house every day. Friends sending happy notes or funny emails so that I will smile. It doesn’t take much and you find out who really cares when you get sick. So many “friends” disappear but let them go, focus on the ones that stick around and are there for you no matter what. Those are the people that deserve the love and attention you have to give.

29. I’m involved with Invisible Illness Week because: it’s so important to raise awareness and help people understand that millions of people live with chronic illness every day and you can’t see it. Don’t judge people by how they look or appear, they may be fighting battles that you could never imagine in their every day lives. Be kind, be gentle and never be afraid to try and make someone smile. It might be just the thing they need to make it through one more day.

30. The fact that you read this list makes me feel: like you care, that you want to understand more of what it is like to live with chronic illness and that if you are also living with chronic illness, then I hope it made you feel like you’re not alone.

Hugs to all. Thank you for reading and I hope you all post your responses to these same questions as well so I can learn about you. If you do, please post a link to your responses in the comment section below.


Living with Chronic Illness: Six Tips for Keeping Your Relationship Strong

Living with Chronic Illness: Six Tips for Keeping Your Relationship Strong

Relationships are difficult when you are in the best of circumstances. When you add in other factors like financial problems or chronic illness it can be downright impossible to keep things happy and healthy between you and your partner. It’s not impossible, mind you, but it does make things much, MUCH more difficult.

I want to discuss the effect of illness on relationships because it’s something those of us with chronic illness, like Rheumatoid Arthritis (RA), deal with every day. The problem is no one really talks much about it. And I think we need to. I think it’s important for people to share their stories with others so that we don’t feel alone in our struggles. So, today I’m going to share how RA has impacted my relationship with my husband and the methods we use for getting through our bad days and celebrating the good days.

1) Move through the grieving process(es) together

You may think that this rule only applies when you first get diagnosed, but it happens more often than you think. In my blog post “Rinse & Repeat: A new stage of grief for chronic illness” (http://idanceintherain.com/2012/03/rinse-repeat-a-new-stage-of-grief-for-chronic-illness/) I discuss how every time we lose an ability like being able to walk, or our condition worsens dramatically or we end up being diagnosed with a new disease, we move through the grieving process again. Recognizing those moments and understanding that it’s okay to grieve the loss of your health, or your ability to do something you love, can make the entire process a little easier.

When you are in a relationship, it’s important to realize that BOTH of you will have your own grieving process. When you are first diagnosed, you have to re-evaluate your life and figure out how you are going to adjust to living with your illness. You are grieving for the healthy body that in now lost and the things that you may not be able to do in the future. But you also need to know that your partner is grieving too. They are grieving for the loss of their partner as they know you. They are just as scared as you are about future events and how this new disease will affect the two of you and your life together.

As time goes on, you may find you are diagnosed with additional diseases. This is very common with people who have autoimmune diseases. It seems like we’re always adding another disease to the list. For me, two years after being diagnosed with Rheumatoid Arthritis, I was also diagnosed with an rare autoimmune liver disease called Primary Biliary Cirrhosis. It’s similar to Autoimmune Hepatitis, but instead of attacking the liver, my body attacks the bile ducts within the liver. There is no cure and I am not able to take the medication currently available to slow progression due to terrible side effects. My doctor told me to keep my chin up, hope for a slow progression and plan on a liver transplant in 5-10 years. It’s been 4 years and I’m still doing well, but both my husband and I know things can change anytime. When they do, we will once again go through the grieving process together and hope that the future brings us both new hope in the form of a liver transplant.

Realizing that you are each grieving for the same losses at the same time can help you both find better ways to cope by leaning on each other for support and talking about your feelings to get through the difficulties and sadness together.


2) Try to see life from your partners perspective.

If you have a chronic illness, its important for you to realize how frustrating it can be for your partner to see you sick and hurting every day. Know that it’s not easy for them to take on the lion’s share of the workload instead of sharing responsibilities equally. And realize that they may be feeling lonely, hurt and sad too.

If you live with someone who is chronically ill, know that if it was possible to wish away their illness they would, but they are just as frustrated by their limitations as you are. It’s hard to ask for help and embarrassing to have to rely on someone for so many things. And beyond their pain, fatigue and other symptoms, they may be feeling sad, guilty and frustrated too.

I’m very lucky in that my husband is a very caring and understanding man. But that doesn’t mean that my illness has been easy for him. As a matter of fact, my husband will tell you flat out, he hates these diseases and what they do to me. He hates that they make me sick, that they keep me in pain and up nights not able to sleep and that I can’t do all the things I want to do. He hates it and he wants to “fix it” all and he can’t. He can’t make the pain go away. He can’t make me feel less fatigued. He can’t do anything except hold me, tell me he loves me and that he understands my pain. And it frustrates the hell out of him on a daily basis. He hates himself for being frustrated or feeling angry at me because I’m sick and having those feelings inside him causes him even more pain. Being the spouse of someone who is chronically ill is not an enviable position.

Most of you reading this probably know what it’s like to be the one who is chronically ill. But for those who don’t, I’d like to share my side of the story. For me, it’s incredibly hard to be sick and depend on someone for so many things in life. I’ve always been the go to, get it done girl. I shopped. I fixed things in the house. I took care of friends and family when they were sick. I had a career and a home and if there was a will, there was a way for me to get it done. I relied on no one and needed nothing from others. I was a version of my own superwoman. And then RA hit and took all my superpowers away with it. As time passed I had to learn to prioritize. I learned to do little things around the house to keep it clean because once a week cleaning was no longer possible. I had to ask for accommodations at my office so that I could work part time from home due to the rising levels of fatigue and pain. Co-workers thought I was lazy and getting the royal treatment because I didn’t share my disease details with everyone. It was embarrassing, demeaning and I worried about losing my job every day. As the RA progressed I was able to do less and less and to be honest, I’m not sure where I’d be right now if my husband hadn’t come into my life when he did. Over the past year and a half the RA has stripped me of just about everything I could do. I’ve failed medication after medication and it’s eating at every joint in my body. I’ve lost the ability to work. I can’t walk more than a few feet and need a wheelchair if I have to go any further. I can’t sleep on my side  or snuggle with my husband in the normal way couples do. I can’t even clean a few counters in the kitchen without my arm joints flaring up, let alone clean an entire room or the whole house. Some days I can’t turn the door knob or the key to let the dogs out. Having to rely on my husband for damn near everything is embarrassing and depressing. And yes, I hate what this disease has done to me just as much as my husband does. I can’t just decide to get up and work on a project or go out with friends. Everything takes planning and timing depending on whether my body is flaring or I’m having a rare good day. But more than anything, I hate having to see the look on my husband’s face when he sees me in pain and crippled by this disease and there isn’t a damn thing he can do to help me.

So how do we get through it all? Together. Carefully, softly and with a lot of deep conversations about how each other is feeling so that we can understand how the illness affects us both. We’ve found that if you can see life from each others point of view, you can adapt your words and actions to make things a little easier on each other when times are difficult. We use something we call a “safe space” where we can each talk openly about our feelings.


3) Make a “safe space” where you can each talk about how you’re feeling without limitations.

It’s hard to share your innermost thoughts, even with the person you care about the most in life. And sometimes it’s really hard to hear what you fear others are thinking. But if you make a “safe space” where each of you can share your feelings openly and honestly, you can address issues between you before they get out of hand.

A “safe space” is a special time when you both sit down and talk about your feelings with each other. It’s a time when you can say whatever you need to openly and out loud without the fear of being criticized or judged. It’s not always easy, sometimes it hurts to hear that someone is frustrated with you. But if you keep and open mind and try not to take things too personally, you can get all those suppressed feelings out in the open. Once they are said, you can work back and forth with each other to resolve the issues between you both.

For me, it was hard to hear how frustrated my husband was with my illness. My first thought when he spoke was that he was frustrated with ME. But as I listened carefully and opened up my heart, I realized he was frustrated by the illness and not with me directly. I needed to hear how much frustration my husband felt from my illness so that I could understand his mood changes and the emotional and physical load that he’s taken on.

He also needed to hear from me how difficult it is to have to rely on him for so many things. He knows know that I wish I could miraculously make myself better, but I can’t. And now that we’ve discussed everything in more detail, I can separate his feelings of “being frustrated with me” to “being frustrated with the diseases” so that I don’t take his moods or actions so personally. I can empathize with him because we’re BOTH frustrated with these diseases and how they affect our lives.

Once you find ways to talk about your problems, you’ll find that it becomes even easier with time. There will be bruised egos or hurt feelings, but if you remember to listen with an open mind and heart and be honest with each other, you CAN find a way to work through the emotions and find a solution that works for you both by meeting in the middle.


4) Realize that it takes two to be in a relationship. You BOTH need to be willing to work on your problems together to make your relationship stronger.

Once you find ways to talk openly with each other, it’s important that you both find solutions to the problems by meeting half way in the middle. It takes two people to be in a relationship and it will take both of you to work through the problems and issues that come up as you live your life together. Many issues may revolve around your illness, but our method of “meeting in the middle” works for just about any problem that may come up between you and your partner.

My husband and I came into this marriage both having been married and divorced before. We knew when we met we both came with our own “baggage” into this relationship. And when we end up frustrated with each other, we often realize just how much that “baggage” affects our moods and the way we react to each other. I’ll use a recent example to illustrate the way we try to work through everyday problems.

The other day when we were leaving the house for a doctor appointment, I was surprised there were weeds in the yard given that my husband had recently applied a weed management product. I said, “Wow, we still have weeds! We need to get out here and see if we can get these under control again.” Whatever I said really seem to irk my husband. I wasn’t sure why but it was clear that it bothered him. When we made our “safe space” to discuss the issue, he told me that he was embarrassed by his anger because it seemed like such a small issue. But he was angry at the fact I used the word “we” when I most likely meant “he” needed to fix the weed problem. Part of his reaction came from his previous marriage and how his ex-wife used to ask him to do things, and part of his reaction came from my illness and not being able to do things to help him. I was honest and told him that I really DID mean “we” because I thought I could come out in my chair and help him by spraying the weeds along the sidewalk. But I also admitted that sometimes I say “we” when I really mean I need him to take care of it. So, in order to resolve the issue moving forward, I agreed to try to be more specific and only use “we” when I really meant I could help him. And he said that if I used the word “we” again, he would ask me, “do you think you can actually help me, or do you really just want me to take care of it?” before letting it bother him. It was a silly disagreement, but we were able to address it and “disarm” it before it caused any more problems between us.

We do this anytime we have issues. We try to find a middle ground so that we’re both working to resolve the problem. It’s our “I will try to do this, if you try to that” method. You’ll be amazed at how much easier things are resolved when you both work together to solve a problem instead of expecting the other person to do all the work.


5) Be grateful for the things you still have and the activities you can do together.

When you live a life filled with pain, fatigue and illness it’s easy to get caught up in all the bad things and forget the good ones. It’s not easy to be in a relationship when the illness sometimes seems bigger than the two of you combined. There are days filled with tears where you both may just want to cry and hurt together for things that have been lost. But you also need to remember to cheer for the small things you do have left and share the hope that you have deep in your hearts for better days to come.

It’s important to “live for today” and to enjoy the small things in life and share them together. If you and your partner both work together you can find the small strengths and abilities that you still have and make the best of them. Maybe it’s not possible for you both to go running around town together like when you were teenagers, but you can enjoy a quiet dinner together at home or out in a nice restaurant together just as much. The key is to look for the happiness in your life as it is now and not as it used to be or how you hope it might be in the future.

In our household, we have a different “menu” of activities that we do together depending on whether I’m having a good day or a bad day. We find ways to make the best use of what we can do on any particular day. When I’m flaring we find quiet, easy things we can do together like watch movies or TV, order in and have a picnic in the living room, or play games together that make us laugh. When the rare good days come we make time for projects around the house, go see a movie or have a meal out somewhere, or even just take a car ride together and enjoy the time talking. When you adjust your expectations and accept the reality of your situation, it’s much easier to find the joys in the simplest things in life like just being able to hold hands on the couch together while watching TV.

Another thing that we do as a ritual every night in bed just before we turn out the light…we share our “happy moment(s)” for the day with each other. I started this nightly process years ago when I realized that no matter how bad a day you were having, if you looked hard enough there was ALWAYS one moment of happiness. When you stop and think about it you can look back and find that one moment where, if for only a second or two, you forgot about life, stress, problems and pain and felt only joy. It could be the sound of a cat purring next to your ear, a joke someone told you or the look on a loved one’s face when you told them something wonderful. I’ve even had “gastronomically” happy moments where the bite of food I put in my mouth tasted so delicious that everything just disappeared except the flavor of that food on my tongue. There is ALWAYS one! And when you make a habit of looking for them at the end of every day, you’ll start to find more of them in your days. We even label these moments now by declaring right then and there that “THIS is my happy moment for the day!!”

It’s a beautiful ritual to share with someone you love, but it’s also something you can do by yourself. It’s a wonderful feeling to relive those moments at the end of the day right before you nod off to sleep. It’s just one more way to focus on the good things you still have left in your life.


6) Make a conscious effort to find ways to show each other that you love and care for one another.

The final tip that I have for all of you is to really make a conscious effort to show your partner that you love and care for them in as many ways as you can every day.

When you live with chronic pain and illness, it’s really difficult to keep the romance and love flowing between the two of you. You may find that it’s difficult to have relations with one another on a regular basis. You may not be able to curl up with your partner on the couch or in bed like you could before you were ill. One of the things I miss most is the way my husband and I used to snuggle in bed together. But with the RA hitting my shoulders and hips so hard, it’s impossible for me to lay on my side for any length of time now. I’ve had to adjust to sleeping only on my back and that makes any snuggling or cuddling very difficult. But we’ve both talked about how important it is to touch and be touched, so we’ve worked around it and found new ways to sleep and snuggle with each other.

We work really hard to keep the love flowing between us in small but meaningful ways during the daytime too. We love holding hands on the couch while we’re watching TV. Whenever my husband helps me up from my chair, we hug and kiss. When we move past each other we make sure to touch an arm or a leg or a buttock to connect, if only for a moment. There are small kisses on the forehead, the top of the head, the back of the neck or the hands that we share with each other. I love wearing his t-shirts as night shirts and he likes to roll over and sleep on my side of the bed with my pillow when I get out of bed early. We may not be able to do everything that normal couples can do, but keeping the love and intimacy active between us is important to keeping our relationship healthy and strong.

Saying “I love you” is just one of many ways to show your partner love. Be creative, have fun with them and make that connection with them as many times per day as possible. You’ll find you both start feeling less alone and closer together than ever before.


Now that you’ve had a peek into our relationship and read the details of how we keep our relationship strong and healthy, let’s look at those six tips one more time before we close…

1)      Move through the grieving process(es) together.

2)      Try to see life from your partner’s perspective.

3)      Make a “safe space” where you can each talk about how you’re feeling without limitations.

4)      Realize that it takes two to be in a relationship. You BOTH need to be willing to work on your problems together to make your relationship stronger.

5)      Be grateful for the things you still have and the activities you can do together.

6)      Make a conscious effort to find ways to show each other that you love and care for one another.


I hope by sharing our story, you’ve found some comfort in knowing that you are not alone. Like I said before, relationships aren’t easy. And when you add in all the problems of living with a chronic illness too, it’s easy to let the relationship fall into disarray while you both struggle with your emotions and the stress of daily living. But if you are willing to work through the steps with each other to make your relationship strong, you will find that it IS possible to get through the difficult times and live, love, and grow closer together instead of further apart. 


Thoughts on Goals and Dreams

“You are never too old to set another goal or to dream a new dream.” – C.S. Lewis

When we live with chronic illness, we often set a lofty goal of being cured or going into remission. But sometimes as hard as we try, there are things going on inside our body that just resist medications, lifestyle changes, etc. Try not to despair in those situations, but instead make smaller goals that CAN be achieved and help you feel better mentally and stay positive through the rough spots. Never let go of the big dream, but never be afraid to find success in smaller goals and achievements either.

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