Lupus and Being the Ostrich

I had been doing so well. Effective medications, exercise, reducing stress, and eating a healthier diet had allowed me to live almost normally for several months and I was thinking this might be my "new normal," that maybe remission was within my reach. I try to be hopeful and positive. There is this balancing point between being trying to stay informed and trying to stay healthy. I've not been balancing very well lately and now I am being the ostrich. I have had to stick my proverbial head in the sand and partake in "avoidance measures".  

I find myself in a strange place, trying to stay informed v's trying to stay healthy. Whatever side of the political spectrum you may be, the time leading up to the election as well as the current situation in our country has been polarizing for most of us, especially in Social Media realm. I have stepped away form Social Media, giving myself a break from the vitriolic political arguments, and the lack of respect, civility, and compassion. I find that it is a waste of energy that I just don't have to give. I have much less nagging stresses now. So I have given it up for now and I find it a relief. I do miss some of the real postings of family's and friend's lives, and perhaps when I have a better handle on my health, I may try again. I have also limited my exposure to the news outlets, which for someone who is usually up to date on current events, it feels weird. 

Healthcare changes and the uncertain future of my personal well being. For those of us with chronic or pre-existing conditions, the potential changes of the repeal/replace of the Affordable Care Act are adding to the worry and stress. I know for me, I have already had to take a job for less money and less hours to try to stay working and stay healthy. The changes in health care could leave me without health care at all, or with such expensive health care that I would be working only to cover the cost of insurance. I also worry about my loved ones who have had cancer, like my sister Kathleen, and what these changes might do to them and their security. I also work in the health care industry, which means things will change there to accommodate the new laws, and less reimbursement from medicare and medicaid, makes my work life uncertain. These worries are added stress to an already compromised immune system. My immune system doesn't like it one bit.

On the positive side, I have a great husband who is caring and understanding. I have a passel of spoiled kitties who are highly entertaining. We have a good life here, even when I'm not at my healthiest. Looking forward, we are planning a big trip this year (it's going to be out 30th anniversary) and I will be using my Lupus travel techniques as best I can and hope we can take the trip without too much fall out. (I am buying the travel insurance.) 

I'm off to make another cup of tea and snuggle with a cat or two.
  

Happy Holidaze!

Happy Holidaze!

It's that time of year again and this year seems to be so much more stressful.  With the election season and all the ugliness that brought out in our friends and loved ones, followed by Thanksgiving, houseguests, people coming to work sick, and the beginning of the "bad weather" season for us here in Southern Oregon, I've been a bit more stressed than normal.  This time of year also brings with it some extra expenses. Who was the genius that decided that property taxes should be due right before Christmas?  Harrumph.  I am behind in my Christmas preparations and feeling like I need to rest more.  Having that "to do" list on the counter helps me remember things when my "Lupus fog" kicks in, but it is also another stress producing thing in my life. 

On the home front, we've had some bad news.  The gigantic large leaf Maple that shades the corner of our home is deceased and is a risk to our house.  The tree removal people are here now and I can hear the chainsaws.  I've been going out every hour or two to see the progress and it's kind of heartbreaking.  Another stressor and another expense.  I'm sad to looks our "Grandmother Tree" but I also know it has to be done. One of the first large branches they have removed was so decayed that it had been full of water, the removal guy said he estimated that one branch weighed more than 1600 lbs, which is more than my Toyota Prius.  It was so very heavy and it was hanging over our bedroom.  I can hear the limbs hit the ground from inside the house. It has to be done. It's also a stressful situation and I'm saddened as well.

With all of these things happening my health has taken a small hit.  I missed half day of work last week and went home with Lupus symptoms, and a migraine with nausea. I could have used that half day to get some of my "to do" list accomplished but instead I had to rest.  I napped for the afternoon and kicked the migraine, but I still felt weak and funky.  

I still love Christmas and the holidays and all that they bring.  I have to say that most years I would have taken care of the lion's share of the Christmas shopping, cooking, decorating, cards, etc., which was fine, I loved it all. However, Lupus changes things.  The last few years my Dear Husband had really stepped up to help with the things that I love about Christmas but have a hard time addressing by myself these days.  He's a good guy. 

All in all, I'm still doing well and am thankful. Perhaps we will pick out a new tree to plant   in place of our lost "Grandmother Tree".   

So, to all my loved ones, if you get your Christmas card or gift in February, please know I still love you and think of you all often, I'm just running a bit late.

Happy Holidaze!

What is it Like to Love a Lupie?

I'd just like to take a moment and look outside myself. I've been rambling on about my adventures with Lupus for sometime now and I'd like to touch on another perspective. Because, in truth, it's not all about me. I have the disease, to be sure, but Lupus has it's impact on those who love me, who count on me, and who have to do without me or care for me when I'm ill. Among those, it's mainly, it's my Dear Husband who has the lion's share of the impact. It has been an huge adjustment for him and I have to say right now that I am more thankful that I can say for his support and understanding along the way.  Don't worry, he knows this, I tell him daily. 

I think the hardest thing for my Dear Husband to adjust to was the worry that he may lose me. At any time. That the cold, or that rash, or the swollen bump on my neck could be signs of my impending demise. In truth, that worries me too sometimes. But for him, he feels helpless and scared when I'm not OK. And I feel guilty for making him feel this way. 

There is a regular level of stress that comes with having a partner with Lupus that I think most couples don't have to deal with to a large extent. Most spouses may get texts from their partners asking to "pick up milk" "I'll be late there's traffic" or some such.  My Dear Husband gets texts that say "test results say it's not lymphoma" or "I have a referral to the ENT for Wed." or "I have to change my meds again" or "the bill for the MRI came in, don't make any major purchases". Yeah, we do that a lot.

The other part of this is the work load and responsibility shift that had to take place when I got ill. We live on three acres in the woods, with chickens, four cats, a big garden in the summer, lots of mowing in the spring, half a dozen fruit trees, and a small vineyard. All of this has chores involved with the care and upkeep. I used to be an equal partner in these things, or at least I would try, he's not easy to keep up with. These days, it's much more difficult for me to do physical work. The muscle weakness keeps me from lifting or carrying much. The sun sensitivity limits my time out side to early mornings and evenings. Extreme temperatures limit my time outside as well. Oh, and I get tired, really tired very fast. So I'm not doing my full share. My Dear Husband, however, is trying to do all those things I can't keep up with regularly, as we'll as his normal share. It's just too much.

Speaking of work, I was a good contributing partner in the money aspect before my diagnosis. However, I had to give up a lucrative position to take a less stressful, closer to home, part time position, to get my health in order. Before this change, I was making twice as much per hour as I am now and twice as many hours. My paychecks are a bit anemic these days and until recently I didn't even have benefits. With all of this there is also the economic worries that come with more medial costs. Medications, tests, regular visits to the specialists can put a strain on a pocket book. So financially my Dear Husband took on most of the financial responsibility in our partnership as well. I still feel cheated about this loss myself but he just says we'll figure it out together. 

The partner of someone with a chronic illness discovers the lack of spontaneity that develops when you have to plan for rest before and after an event or an activity for us to keep healthy. You live with lots of little disappointments, when what you want to do is put on hold until we feel better. When you want to be romantic but your partner is taking meds for pain and is so exhausted they miss your hints. I sometimes wonder if I'm worth hanging around for. He says I am and I'm so thankful. 

Some of this sounds sort of dire, and sometimes it feels that way too. However, I've been getting a handle on my health. I've got good doctors and the medications are working for me. I've made some changes in how I do things that are helping. I have tried to do what I can to make this easier for my Dear Husband too. I try to understand that he has to cope with this too. I keep him up dated on my heath status, medical appointments, tests, etc. so there are no nasty surprises to cause undo worry. I try to plan ahead to do events that mean a lot to him, by resting and bringing all my "gear" to do the best I can in environments that challenge my health. I try to help more on the good days so that all of the responsibilities are not falling on him all the time. When I'm feeling well, I schedule date nights to be sure he knows I still think he's the best husband ever. On good days when I have the energy, I try to cook the big meals that I know he loves. I do what I can when I can.

The situation is not perfect, but we are doing well and we care a lot for each other. I don't know what I would do without my Dear Husband and all he does for us. His emotional support and sense of humor are vital to my well being. He keeps me healthy in so many ways. I am so thankful.  

Still Trying to Be Me

Well, it’s officially autumn and I've been trying to make some changes in my world that will allow me to be “the me before Lupus”. I know, I know I’m still the same person but it sometimes feels like I’ve become someone else. The things that I now have to avoid have made my world a bit smaller and I resent it now and again. I used to be outdoors doing activities and kept my body moving enough that gaining weight was not a huge problem. I used to be able to high impact physical activities without symptoms. However, since being diagnosed with Lupus that has changed.  Not being able to participate in high impact activities, or be outside due to my vampire like reaction to sunlight, being often exhausted or ill. Sometimes, just being depressed about my limitations kept me from moving my body enough.  Also, I’m now in the sisterhood of “wome

n of a certain age”.  Things they are a changing.  

That all being said I am still trying to be me where I can. Recently, I have found a used treadmill for about $25 at a garage sale and have been trying to be active everyday. It’s not like mountain biking, rock climbing, walking in the woods, or any of those other things I used to do, but I found that if I can do the treadmill for 30 minutes per day I actually feel better.  The other thing is when a body is not mountain biking, rock climbing, etc., that body can’t eat like it is.  So I’m watching my intake and I really, really, really don’t like that. I like to eat. It just sucks. We still cook great meals, do my summer canning, and we still eat very well, but I used to have a lot more latitude when it came to my caloric intake when I was active.  My daily treadmill work out is helping me enjoy food without as much…erm….Backlash. Since my daily 30 workout, I’m sleeping better and have had less of those “It’s 4 AM and I have not shut my eyes!” nights. I’m feeling healthier too.  

I’m still taking medication, and will most likely be doing so for the rest of my life. However, the medication that I am on is a “First Tier” drug and one of the options with the least side effects and long term risks. In fact, I’m doing well on a half dose, so I’ll be sticking with it for as long as my body will let me. It’s really helped me have almost normal days. I have not have severe flares for several months, just some of the less scary symptoms that make me exhausted or uncomfortable. Because of this improvement, things at work have improved and I’ve been able to increase my hours enough to qualify for medical coverage. This is a very, very good thing. I’m very thankful for my position, as well as for my bo

ss who was willing to work with me and help us both get what we needed. I’m very fortunate.

The limitations on one’s social life is still a big challenge. I miss being spontaneous, being outdoors, staying up late, saying “yes” to all those social engagements, being the person who can be counted on. These days, early to bed, sticking to a schedule, keeping to a diet, choosing one event per weekend instead of all of them, and resting regularly, is my normal. It’s working but I still feel cheated now and again. However, remission is possible. The better I care for myself the closer I can get to that Holy Grail. 

I’m still trying to be me. 

When Judgey Judgers Judge

When Judgey Judgers Judge

While talking with some loved ones regarding how Lupus has changed my world and how I am adjusting, the question of "What are your biggest challenges?" came up.  I went through the normal list of things, the balancing act, trying to work, self care, medications, etc. You might know that story by now. But one of the things that I did mention got wide eyed astonishment. It's when judgey judgers judge. It's the judgment of others who know nothing about Lupus but seem to have an opinion about what I do to, or don't do to take care of myself. I guess it's one of the things that bothers me, A LOT, about having Lupus. I tend to tell people about my disease, because I feel if more people know about it, the more it will be less of a "thing", but I try not to dwell on it unless people genuinely ask for information. 

The judgment is weird though. For example, I might meet some new friends at a winery for a glass of wine. It's a great opportunity to learn about each other and get to know these new friends. Well, they want to sit outside on the patio. I voice my preference to sit inside, I'm out voted, we sit outside on the patio. I dive for the shady spot and keep scooting my chair around to keep in the shade throughout the visit.  Here come the "arched eyebrows" and the "eye rolls".  I might apologize and say "Sorry, I have to stay out of the sun, I have Lupus" but they most likely don't know what that means. I can see the retreat in their eyes. Often, I don't get invited next time.  The attitude that I am "high maintenance" or "attending seeking" is common. 

 I also feel the judgment when I have to dress to be out in the sun or in extreme temperatures (either hot or cold). Wearing a big hat, long sleeves, and long pants when it is a hot sunny day, makes a gal stand out. People ask, "Aren't you hot?". Yep, yep I am. If I bring a parasol to a public function, people think it's some kind of fashion statement.  I'm just trying to keep doing the things I love without getting sick.

Sometimes people are convinced that, my Doctors and I are choosing the poison of medication over some herbal remedy they read about on the inter-webs. I have actually tried several herbal remedies. They didn't work. Lupus is much bigger than that. I believe that finding my equilibrium with my health has taken several years, several doctors, several big life changes, a lot of hard work, and a very precise application of medication. It's taken a lot to get to this place. Now that I'm living at about a 80 to 90% of normal, I'm not going to mess this up.

The worst judgment comes from those in the medical field, whose job it is to take care of me. I spend a lot of time going to appointments and getting tests regularly to keep a handle on my health. I have to take medications regularly. I have pain and other symptoms that crop up often. The judgement from the nurse, or Urgent Care Doctor, or pharmacy assistant, sometimes makes me feel like a criminal. Many times they think I'm a drug seeker, even though I am not crazy about taking new medications. One of my symptoms is that I don't react well to medications and I tend to avoid starting anything new. When I do have to take something new, I start with a half dose to be sure I don't get into trouble.  But, I hear their leading questions, and I see them judging me. 

The thing is, we have all had those moments where we have judged others for their needs or necessary accommodation because it caused us a slight inconvenience or a change in our expectations or plans. Whether it's a disability, an illness, a food allergy, a diet regimen, or addiction recovery, I don't want to be that judgey judger who judges. 
So, I'm learning.

Family Reunion number 38?

I think it's 38 anyway. Lupus Fog. 
I got back from an amazing weekend of camping, tasty food, lots of hugs, and a ton of silliness and merriment.This event has been a tradition in our family since my early teen years and we all look forward to it every year. Camping? with Lupus? you may well ask. Yes, I went camping (sort of) and of course Lupus followed along as ever it does.

  


Lupus changes how you participate in outdoor activities and also what "gear" you bring with you. I had lots of sun screen, scarves, hats, long sleeves and pant legs, and one very cute parasol. I really wanted to go swim in the river with the kids, but there just isn't a safe way for me to do that. (I'll have to work on a solution to that) My Dear Husband wasn't able to join us this year so I was on my own and not willing to try to do the physical tent set up, gear lifting, etc. by my self. I figured it would be physically difficult any way, so why tempt "the wolf". I also didn't actually try to sleep at the campsite. I drove to my sister's home (thanks Mary!) and slept on her very comfortable couch. I know it seems silly to call it camping, but that's how I need to roll these days. If I can't rest and actually sleep, then Lupus puts an end to the fun really quickly. It mostly worked too.  

After making sure I can stay out of the sun and finding a place I could sleep well, I then had to take into consideration the heat, food and chance of infection/illness. The food is not an issue, because my family are all amazingly healthy and really good cooks. Other than the S'mores, I can honestly say that the food was spectacularly good and extremely healthy. Since I despise marshmallows, I can avoid the obligitory S'more just fine. Then just making sure I don't share cups, etc, and stay away from anyone showing signs of illness at all. Unfortunately one of my siblings was unwell, which meant no hugs and keeping a bit of a distance, which I have a hard time doing. I'm a hugger. 

I think I did pretty well with the preparations before hand, resting to charge my batteries in advance, keeping up with my medications, and the safety habits implemented during the event. Also, because it's only a couple of days, it seems the Lupus "fall out" didn't hit until the drive home. I had a drive of about 5 hours to get home. Even with the rest stops, my body started to get stiff and my connective tissue inflamed. I had to stop for coffee to stave off the fatigue. Once home, sleeping in my own bed and resting is the best medicine. However, I had to start back to work on Monday and work all week. I'm just starting to feel like the inflammation is reducing and it's Thursday. I have one more day of work and then I have a weekend at home and I won't be doing anything but recovering, and maybe doing a load of laundry or two.  

I think this was a success. I got to participate with my amazing family in a tradition that meant so very much to our parents.  I love that we still honor them and carry that torch.  It was a fair trade for being able to still be me, not to lose that piece of who I am.  And here's the thing, I'm getting better at it all the time.  

I'm going to end with a big huge thank you to my friends and family, who try to learn about Lupus, who ask thoughtful questions about what it means to have Lupus, who make accommodations that allow me to participate in the family gatherings, and social events. To those who love me without judgement and in spite of this disease. You cannot know what your loving kindness, understanding, inclusion and acceptance means to me. My family is amazing.


P.S. At our family reunion, my niece Anza and her lovely friend, Sonja, interviewed me for their podcast. Learn about their Sex, Drugs and Sustainability PodCast at https://www.facebook.com/SexDrugsAndSustainability 
They are doing good things.


My interview should be coming out in October.  
Spoiler Alert: I ramble.

A Reoccurring Theme

A Reoccurring Theme

I've noticed something in the last few weeks that seems to be becoming a theme. Once I had received my Lupus diagnosis, I started crossing paths others with the same disease. Several of them had been recently diagnosed. After a coworkers grandson and a non-blood related family member were recently diagnosed within a week of each other, I started thinking.  Is this coincidence related to the increased ability to better diagnose Lupus?  Are more people acquiring Lupus at a higher rate? It sometimes feels like a "catch all" disease that when we have symptoms which are hard to explain, or difficult to pinpoint, that we are lumped together under the Lupus umbrella.  However, I know that just in the last few years, the understanding of autoimmune diseases seem to have achieved a better understanding.  Lupus, Fibromyalgia, Rheumatoid Arthritis, Hashimoto's Disease, Sjogren's Syndrome and Raynard's Syndrome,  just to name a few, seem to be more recognized and discussed than in the past. However, I was not in a place to know about these diseases until one of them landed on my door step. So perhaps it's just that I am more in tuned to the conversation now that I carry the Lupus label myself.  

At any rate, it is upsetting to hear of others who will have to adjust their lives to accommodate this disease, to change and perhaps loose things that matter deeply to them. I understand the denial,  anger, fear, and the sadness. However, I do know that with some changes, the help of medications, and some new habits and behaviors, they should be able to live a good life. There will be things that they will have to give up, and there is also the challenge to find a way to do the things you love in a different way that will not induce illness or flares, or at least not bad illness or bad flares. It can be hard but, it can be done.  

Many times I take part in an activity knowing that I will have to pay the price in discomfort or pain.  But I make that choice so I am not losing a part of me that I hold dear. I have learned to plan ahead. Often I'm saving my energy for days in advance, resting, eating right, avoiding triggers (sun, infection, trauma, stress), then going to an outdoor event or doing a physically exhaustive activity, knowing that I will be sick or in pain for several days after, as payment for that bit of joy. Sometimes it's worth it.

I'm learning how to live my life with the help of information, medication, self care, the help of others. It's a good life. So, I believe those newly diagnosed that I spoke of earlier, will learn, make changes, and also have a good life.