Friendship struggles when living with chronic illness

      One of the struggles that living with lupus or any chronic illness that is maintaining friendships. Friendships are hard for most people. I can't think of one person who has not been hurt by a friend. But, with chronic illness those struggles can be very complex. We want friends but we need friends that have two things. One thing is compassion another is empathy. We never want sympathy! At least I don't. Friends tend to think if one doesn't complain they are feeling fine which can be far from the truth. It takes a very special person to be friends with someone living with chronic illness. Some people honestly can't handle it. They don't have the patience or understanding that we need. They often make the person feel invisible. My illness is invisible but, I am not! I've never been one to complain about my pain & fatigue. But, I do have many days when I'm feeling very sick. I'd like for a friend to ask how I am & really mean it. But, sometimes this doesn't happen. They act as though I must be feeling well because I don't complain. For someone with good health they might not understand this idea. But ask anyone with chronic illness and they will understand exactly what I am saying. Another frustration that I find is friends will say things like "rest up and you'll feel better", umm no not really. I know they probably mean well but it can be so frustrating. Instead I want them to say I hope rest makes it easier for you. We are often made to feel that because our struggles are every day that we are used to it. When actually we never get used to it. Imagine you feeling like you have the flu every, single day of your life with pain that eases but never goes away. That is something no one gets used to. No-one. Another thing people often do is play the compare game. By this I mean they compare their friends, neighbors cousin who has the same chronic illness as you do. They think that if they person does well and works that you are the same, That is another myth. I have had people assume many things about my life because of another person who has the same illness that I have. Every person is different just as every reaction to disease is different. People often don't understand. The illnesses I have are mostly invisible. That fact in itself is beyond frustrating. But, to have a friend assume you are well because "you look good" it's mind blowing! So you might ask what does said friend do to help themselves be a better friend with a person like me? First talk openly with your friend. Ask them about their disease & how it makes us feel. One of the most special moments I had was years ago. My friends child asked me why I used a cane. They were kind and respectful. It made my heart that a child wanted to know more about me. Most people will gladly educate when asked. Another thing is when you ask how we are do it with feeling. Don't ask us like we are strangers. Another very important & frankly consider thing is to consider our physical abilities when planning activities. Are we able to walk through an amusement park without short rests? Can we climb a flight a stairs without struggling? Those are just a couple of examples of what you can do for that friend. Remember we are trying to enjoy our lives too. 

Christmas is how you feel in your heart.

  I grew up a part of the large extended family. My dad comes from a family of  7 and my mom a family of over 10 people. Holidays were celebrated in a big way. We had big dinners and long days of eating, drinking & lots of merriment. Christmas was always the most special of the holidays. My mama was the Queen of all things Christmas. She loved every part of it. Her preparations would start right after Thanksgiving. My parents hosted Christmas Eve for my mom's side of the family. Every year she would prepare a feast for a king! There were beef or pork roasts, pastas, side dishes, sometimes we had duck. sometimes we had turkey too. Homemade breads, cakes and cookies would be prepared for weeks. My brother & I loved being her taste testers. She performed magic with her decorations and preparation of all the glorious savory foods and sweets. We had music from the record player, 8 track or cassette depending on what year it was. My aunts, uncles and cousin would pile into their cars and drive our house with presents in tow. Somehow there was always a friend or two invited to our Christmas Eve parties. The more the merrier was my parents theme! The adults drank mixed cocktails, wine and beer and us kids had all the pop we wanted to drink that evening. We ate, danced, laughed and at midnight we would wish each other Merry Christmas with many kisses and hugs. Then it was present time! For us it was the best day of the year. Christmas Day was always celebrated with my dad's side of the family. It went pretty much the same as Christmas Eve except the celebration started earlier in the day. My grandparents hosted Christmas Day until my grandpa passed away in 1969. Then my aunts & uncles took turns to host. We ate lots of food some of it Polish since my grandparents were Polish immigrants. Ate delicious desserts along with more merriment. One of my favorite parts of Christmas Day was when my dad & his brothers & my older cousins would play poker. If I close my eyes, I can picture each of them playing and trying to bluff when they had a good hand. We opened presents that day too. Their was an abundance of love & laughter those 2 days. 

Growing up family was the most important part of  our lives.  My parents taught us that from the very beginning. We stuck together through the good times and bad. We had each other's backs. We didn't always agree upon everything but, we learned compromise & when to agree to disagree. Some members of our extended family were closer to other. But on Christmas we were all one. I loved every minute of it. 

Now most of those beautiful people are gone. My Mama was the hardest loss for me. Her last Christmas was 2017. That year she was too sick to prepare much. But my immediate family was together. As we've been each year since. Our family is a lot smaller that it was when I was younger. But I hold precious memories of those Christmases long ago. I'm grateful for every year we had together. And I look forward to the years to come. To me, Christmas is how you feel in your heart. I feel loved and that's the best thing about any day, especially Christmas. 

My weekend in Southern California #socal #vlog

I might have obstacles but I won't let that stop me!

  Recently I was looking over my Instagram & realized I hadn't posted a blog in months! So here I am. I wish I was the type of blogger who wrote more consistently. What can I say? I'm a work in progress! 

It's June & summer is here in full force. I live in an area where it's hot most all year round. The summers can be grueling but thankfully there is air conditioning most every where. I do love living near water, the ocean has a calming effect on me. Lakes & rivers don't do much for me but oceans now they are my piece of heaven on Earth. Recently I went on a long weekend trip & saw the Pacific Ocean. I've seen it a few times but each time I see a different view. 

Traveling with chronic illness can be challenging. To me it's worth all the challenges but, I'm the type of person that would rather experience a lot & then rest afterwords. Rest helps me to heal from a busy day, it doesn't necessarily take away my pain but, it makes it easier to move again. One challenge is the ignorance of people. I walk with a cane when walking long distances. It helps me stay balanced and acts like a third leg. But, people see me walking with the cane and ignore that I can't walk as fast as they might be able to. Some people practically walk over me. I've almost been knocked over a few times. People on airplanes are always in a hurry. I have to tell them to walk around me. Sometimes they act like my disability is their problem. Honestly sometimes I want to tell to go the Hell! But, I don't. 

Another challenge is trying to keep up the pace with the people I am traveling with. This is more of a self inflicted challenge. Anyone I travel with knows that I have to move slower. But, I get frustrated when I can't walk as fast or keep up with the pace. I know I shouldn't but don't we all want to fit in? 

Moving my suitcase around can be challenging. Even with a suitcase with wheels, it can be hard to move it around. Whether you walk with a cane or have pain or less stress it's just plain hard! Taking a suitcase off the belt at the airport is a lot for me. But, sometimes I find a kind person to help me. Honestly I don't travel much by myself. But, when I do I rely on the kindness of strangers to help me. Asking for help is hard sometimes but, I put my pride aside and find someone to help me. 

Staying at hotels you have to plan ahead. I find asking for a room closer to an elevator or lobby is helpful. The less I have to walk through the hotel the more energy I have for the fun part of my vacation. 

I always remember to pack the necessities for my life such as pain reliever, a facial mask for self care & rest time, heating pad & anything else I think I might need to help make me feel as comfortable as I can be.

It might seem like a lot to prepare for but, the experience of traveling is worth it all to me. 

But the best thing to remember when traveling is if I forget to pack something I need there is always a store nearby that I purchase that item I forgot. Don't freak out is something I say to myself often.

Can you believe 2021 is almost over with?

 It's that time of year after Christmas and before the new year starts. I wish I had spent more time on my blog this 2021. I can try to make 2022 my year to write more. But I'm not going to be upset with myself. All I can do is try. It might be easier & nicer to blog more. My wonderful husband spoiled me this Christmas. One of my gifts was a new MAC book Pro. I love it! It's the perfect size, easy to use and so fast. My last computer was a Window laptop. I had it for a number of years. It was large, heavy and older. But, it was also a gift to cherish given to me by that sweet man of mine. 

As I usually say this year went by fast! I think the older you get, the faster the years go by. 2022 will be a big year with my family. My sweet husband has a BIG birthday! I'm hoping we can celebrate it in a big way. He'd be happy with a romantic dinner just us two. We'll see what I plan. 

I'd like to get back on track of my diet. I lost a lot of weight over 2018-2020. Ive gained back 10 of those pounds. It doesn't make me happy. But, I know that I can lose that & more and I will! I want to walk more to build strength to my legs. I've done so well this year getting stronger and haven't used my mobility scooter in over a year. Yay me! I did need to use a wheelchair at Epcot this past November. But the next day, I walked Magic Kingdom! I used my walking cane but, I was still proud of myself. 

My kidney doctor put me on a PRN basis. I had been seeing him twice a year since 2008. But now my kidneys are doing very well. So no need for that. Life with lupus has a lot of surprises this was a GREAT surprise! 

My psoriatic arthritis has been bothering me often. My rheumatologist switched around the dosage of the injectable I take every 4 weeks. I'm hoping this will help with my pain. 

I'm hoping & praying for a great 2022. I'm going to do my part to make it the best I can. 

Happy New Year! 

Is hair that important?

 Hair loss can be one of the hardest side effects of having lupus. Unfortunately I have been losing hair for several years. Some times the thinning is at a slow rate. But lately I’m seeing more hair in the sink, shower drain & on my brushes. They say that our hair is our “crowning glory”& for me it’s true. I was born with a full head of thick, black hair. And although it lightened to a brown shade by the time I was a toddler, it still was thick & wavy. When I turned 30 years old my hair began a change in texture. I started seeing it become more curly & less wavy. It’s stayed that way to this day.  Seeing it fall from my head makes me sad. I never knew how much pride I had in having “good” hair. Only until lately has it hit home that someday I won’t have have much hair at all. I have a plan of what I will do when that happens. But until then it’s a reminder of what lupus is doing to my body. So for now I fluff, tease, back -comb, dry shampoo until I can do no more. Reason 599 that I hate having lupus. 

Dealing with lupus fatigue

  A big part of living my life with lupus & other auto immune illnesses is dealing with fatigue. Fatigue is not just being tired. Its much more. It’s feels like I have something slowing me down, preventing me from doing what I want to accomplish for the day. It can be very annoying plus depressing. It seems like a big percentage of my life I am resting. I try to make this down time as positive as I can. Here are some of the things I do to battle the fatigue.

Naps, I’ve learned that even a 10 minute one can help me feel more refreshed. 

Showers, I prefer warm water because it soothes my achy bones & muscles 

Facial masks are a good part of skin care. Remember the skin is our largest organ. We should take care of it the best we can.

Staying hydrated

Following a nutritional diet

Watch a favorite TV show, movie or YouTube video

Journaling is such a great way of relieving the pent up stress of fatigue 

What are the ways you deal with fatigue?