Dear Friends and Family of Autoimmune Disease Sufferers

Turbulent sea ahead.

        Turbulent sea ahead.

Do you have a friend or family member with an autoimmune disease? Perhaps they have Lupus, Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Hashimoto’s Thyroiditis, Myasthenia Gravis (MG), or … the list of diseases goes on. Since autoimmune diseases like to travel in packs, it’s VERY possible a person suffers from multiple autoimmune issues at the same time.

Dealing with these diseases alters people’s lives. They often impact every aspect of a person’s life. Many of us sufferers have trouble keeping up with our previously normal daily routines due to weakness, excessive fatigue, intense body pain, breathing issues, etc. It’s challenging to schedule outings and get-togethers far in advance due to the unpredictability of symptoms. One minute we feel relatively okay and 10 minutes later we could be falling-down weak or in so much pain we can’t recall our names. Between the diseases themselves and the poison we often take to minimize suffering, we often feel nowhere near our old normal selves. We live in a new normal and it’s difficult for those not suffering to understand that.

Please do not try to play doctor with us. We know you mean well, but if you think we haven’t out-researched our conditions and every possible form of natural and pharmaceutical treatment, think again. Most of us go way beyond Google searches and WebMD!

We’re not lazy. We’re not trying to be difficult. Most of us want our old, pre-disease lives back. Some of us have to sacrifice our jobs, our ability to drive, our ability to walk without assistance, and the way we go about things every single day. Spontaneity is not usually a part of the day in our new-normal lives.

Just because we now live in a new normal, it doesn’t mean we want to give up our friends and family. We just want you all to be patient and understanding. We do not want to ruin your plans. We don’t want you to act weird around us. We also don’t want to feel like a burden to anyone. Treat us the way you used to treat us. Stop by for an occasional visit. Invite us out to lunch, dinner, a show, but be understanding if we’re not feeling up to going out. The last thing most of us want is to feel left out and alone. Maybe our visits will have to be shorter than they used to be, i.e., no more late or all-nighters! That’s okay, time can still be well spent just hanging out and talking or preparing food together at home.

I’ve seen so many people come together to help friends and family members after a diagnosis of cancer. Cancer treatment often involves chemotherapy, radiation, and surgery and the horrible side effects from treatments. Some people will endure treatments for a few months, a year, sometimes longer. The goal is remission and freedom from the cancer. With many autoimmune diseases, immunosuppressants such as prednisone and chemotherapy are often used for treating/managing symptoms with the same nasty side effects and the hope of remission. Some autoimmune diseases are also treated via surgery, as in the removal of the thymus gland in MG patients. This sometimes results in remission, other times symptoms continue. There is no timeframe for treatments for autoimmune diseases. Treatments, in one form or another, go on for the remainder of life, or until you go into remission. Some lucky people have lengthy or intermittent remissions, while others never achieve remission.

Many people die from cancer; many people also die from autoimmune diseases. Ironically, thanks to the medicines offered for autoimmune diseases, some people develop various forms of cancer. It can become a double-dose of suffering!

Be patient, be kind, be understanding, and don’t forget about us. Our bodies are trying to kill us. We need all the help and support we can get to fight back.

All was calm, all was bright, and I’m tired

A cure for autoimmune diseases

My Christmas wish: A cure for autoimmune diseases

Wow! I can’t believe how busy I’ve been since I last posted. I’ve had lots of ideas that I’ve jotted down on scraps of paper and my many notebooks, but I’ve yet to write out any of them. One idea I will write up is for new year’s eve/day.

So much has transpired since my last post. I finally made it up to the maximum (for me) dose of Imuran to control myasthenia gravis (MG) and deal with whatever other crazy autoimmune crap is going on (some doctors are leaning toward lupus, others say it isn’t). I say if it walks, quacks, and looks like a duck, it’s a duck. The increase in Imuran has actually helped the joint pain and has eased the gland swelling and random fevers. Plus, MG has been relatively calm. Raynaud’s is being suspected now with the crazy cold, blue/purple, and aching hands and feet when they become even slightly chilled. Whatever … I now LOVE wearing thick socks. I never, ever thought I’d say that being the queen of bare feet around here. Good thing I received more socks for Christmas!

In other news, I’m wrapping up a four-month project as part of my new business venture. I now have to seriously work on bringing in new clients. I’m being faced with balancing rest and quiet time with time of action and work. It’s quite the challenge but MG has a way of reminding me how to do it. Hmpf, who am I kidding? MG ambushes me and knocks me flat on my arse the second I overdo it!

I spent 12 hours with family yesterday for Christmas. It was a wonderful day spent laughing, eating wonderful food, exchanging gifts, and generally enjoying each others company. We had to bury one of my cousins earlier in the week so it was a much needed emotional break for everyone. Despite the fun time, I am paying for it today. It’s nearly 6 p.m. and I’m still in my pajamas. I’m T-I-R-E-D! I’ve not showered or anything today. Two hours after I woke up,  I curled up on the couch for a nap, which was interrupted by breathing issues out of the blue. So, back up I am. What better way to use my time than writing?

Those of us who battle chronic illnesses often struggle with family and friends who just don’t understand the challenges we face every day. I can say that the family side of my world—well, at least my immediate family—has been cool with my situation. I’m grateful! Many of them still don’t fully understand my illnesses, but they’re supportive. Only one gripe, there are still no gluten-free options for me on the dessert table unless I make something. That isn’t a problem normally for me, but MG tests my strength and energy. I managed to make a soup that was requested of me during Thanksgiving. The soup is relatively simple, but I still didn’t have any spare energy to pull together a dessert. Perhaps, I’ll make a treat for new year’s eve/day to go with my popular spiced black-eye peas.

I’ve been invited to a meditation and potluck for New Year’s Eve. The weather might be a bit icy so I’ll have to wait until the last minute to know if I’ll actually attend. I’ll be content either way. If I stay home, I can put on my pajamas early, get my burning bowl together, have my sparkling cider, and be safe in bed by 12:01 on New Year’s day to prepare to go to my favorite place for sunrise (if the weather plays nice) later that morning.

Well, looky here, it’s 6:20 p.m. now. As I mentioned earlier, I’m still in my pajamas, which means I don’t have to prepare for bed. There are serious advantages to remaining in your PJs all day. 😀

Trip #42 Around the Sun

I celebrated another trip around the sun last Thursday. It was an odd day. I‘ve been battling a nasty bout of depression for a while but was determined to at least get out of my apartment and experience the open air and day. I intentionally worked my butt off earlier in the week to have this day off just for me.

I treated myself to a slice of gluten-free carrot cake (my absolute favorite cake). If you’re wondering, I have Celiac disease so everything has to be gluten free.

Anyway, I bought my carrot cake and went to one of my favorite coffee/tea cafés that sits on Lake Austin to enjoy it.

The café is a very popular place with limited up-close parking. There are rarely parking spaces available in their lot. You have to park up a steep hill where there’s ample parking. Regardless, every time I go to this place I cruise the close lot just in case something is open—it’s always in vain. As I pulled into the lot this time, I said, “Please let there be a spot for me in this lot.” I really wasn’t feeling all that physically strong after having walked up the “easy” side of Mount Bonnell that morning to view my birthday sunrise.

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I entered the lot, and as I was coming to the end of the lot before I would have to turn around and park up Mt. Kilimanjaro, one little space was waiting for me! It wasn’t on the far side of the lot; it was right up against the sidewalk leading to the café! Score!!

The next request was that one of my two favorite seats be open in the lower half of their outdoor seating area. I snagged a tea and wandered downstairs. Yep, both seats were open. I opted for the covered one since no one was sitting near it.

I sat and wrote for a while. I’ve returned to random personal writing just to clear my head of crap most people around me do not want to hear. Some of you dear readers get to see some of it. Heh!

So I sat for a while then left to run a few errands. Received a handful of text-message birthday greetings. What happened to people picking up the phone to call? Whatever. Well, at least mom, dad, and my sister called me.

The evening ended with me doing laundry and troubleshooting Internet issues at home. Exciting, huh?

I drifted in and out of my bummed state all day. It was one of the first birthdays in a long time that I didn’t have any kind of gathering with friends/family. Illness has taken a lot from me including many people I considered close friends for years. One of those friends has invited me for dinner next week to celebrate. We go way back to high school, 10th grade to be exact. She is one of the remaining diehard friends still around and I love her and her family to bits!

A lot of people just don’t know what to do with me. I no longer drink alcohol (I still crave it like a mad woman at times), I’m a lot slower than I used to be thanks to myasthenia gravis and lupus so I can’t keep up with people who want to do a lot of walking or hanging out that involves a lot of standing around. I also tire easily so it’s difficult to stay up until the wee hours chit chatting about whatever like I used to.

I started reminiscing about some of my favorite birthdays. Birthday #18, I went with a friend to what would become one of my favorite music hangouts — the world-famous home of the blues, Antone’s. I found out that evening the founder Clifford Antone, may he rest in peace, had a birthday a few days before me. As the years rolled by, he would address me with “Hello my Scorpio sister” and give me a big bear hug at the front door of the venue when I would drop in.

Birthday #29 I partied like a goddess rock star in Brussels, Belgium with friends. What happens in Brussels stays in Brussels.

Birthday #38 I had a large gathering at my place. I was living in a much larger space at the time. I threw a birthday/Halloween party and invited 50 people. Only four or five couldn’t attend. We partied until the wee hours. I still had a few guests left over for breakfast the next morning. No, I didn’t eat them. I did cook for them, though.

Birthday #40 I went skydiving for the first time. Mind. Blown. Awesomeness! I had a very small gathering of family/friends at my much smaller space (the place where I currently live). A couple of months prior to this birthday I was diagnosed with myasthenia gravis. I was quite weak, and never should’ve attempted skydiving, but at the time, I really didn’t care. I was only going to turn 40 once and I really didn’t know at the time if I’d see another birthday given how my health was going downhill. My neurologist didn’t know I did it until after the fact. Poor man’s eyes nearly popped out of his head! Obviously, I broke a skydiving rule by not telling the instructor about my illness. I knew they would never let me go up even though it was a tandem jump. I felt okay that morning when I got to the place. No one knows it except yours truly and you all reading this that my leg muscles didn’t want to engage when it came to the landing. The instructor on my back and the guy filming on the ground kept yelling at me to raise my legs for landing. They just didn’t want to work. I truly didn’t know that I had three seconds to impact to get my legs up. That almighty unseen force lifted my legs and held them in the nick of time. The instructor and the film guy hugged me so hard after that I could barely breathe! When they told me how close I was at the moment my legs went up, I couldn’t believe it either. I think that realization gave me the same adrenaline rush experienced once the cold air hit my face upon leaving the plane.

I’m a bit more stable now and, God willing, I’ll be in remission if I’m still around for my 50th birthday, which is when I plan to jump out of another perfectly good plane.

Those memories made me happy for a bit then I went back into that dark place of isolation wondering what will happen during this next year of life. New friends? New love? New healthy body? Who knows? At least I was able to have some carrot cake. It’s not a birthday without it!

Out of Darkness, Into Light

Happy Diwali

Today is Diwali, the Hindu celebration with many stories behind it. In short, it celebrates moving out of darkness into light. I created a very simple rangoli for it this year.

Odd thing though, I woke up this morning not feeling so light, bright, and cheery. I’ve been fighting all sorts of emotions this week. I’m happy to be doing what I enjoy doing, but at the same time I’m still struggling with having to do so much just to make my humble ends meet. I’m really hoping for that big break one day before I collapse from sheer exhaustion.

Regardless how cruddy I feel, I must keep making forward progress … somehow … some way.

My 42nd birthday is next week. I’m excited at the prospect of having survived another year of good and bad chaos without having been locked away in a cell, mental ward, or urn/casket. A lot has been accomplished since this time last year. I am grateful for it all, but man, I just need some real, high-quality rest without a care in the world and the chance to wake up full of life and light!

Trying to make peace

I saw my myasthenia gravis (MG) neurologist today for a followup. I’ve been having a decent run with symptoms for a few months. I still have crazy, weak episodes but I’m recovering from them faster than I have in the past. I’m only on Imuran (aka, Azathioprine) to treat symptoms. I’ve run the gamut of Mestinon, prednisone, and IVIG. Imuran seems to be the path that’s working for me.

After completing my strength test today, the neuro sat back, looked at me, and had teary eyes and commented that I’ve come a long way since this time last year. Yes, it has been a crazy, long journey. I’m now able to do light exercise (cardio and hand weights along with some general resistance exercises). I’m happy about that. He also noticed I’ve lost a few more prednisone pounds since I last saw him. I’m VERY happy about that! I gained 65 pounds while on prednisone! I’m working my way to losing 45-50 more pounds to get back to my normal and comfortable weight. As long as I can still use my stationary bike and my weights, and stick to a decent diet, I should make it there. If I make it in a year, that would be wonderful.

On the flip side, I’ve been battling envy and jealousy lately over some people in my MG world who have the luxury of travel, vacation, and just generally doing cool things they enjoy with friends and family. Most of these people have a lot more in the way of financial resources to be able to do such things. Some on disability have spouses  who are the primary breadwinners. It’s challenging for me sometimes because it’s just me. I do ALL of my own chores, errands, cooking, cleaning, personal planning, self-care, oh yeah, and I still have to make a living. Dealing with all of it on top of chronic illness (MG isn’t the only chronic beast I battle) is very challenging. I can’t delegate to others because there’s no one to which to delegate. If it has to be accomplished, I’m it.

I try to keep my thoughts and feelings to myself around them—the lucky ones— but sometimes the evil green-eyed one comes out revealing my desire to have the help I really need at times and to be able to go out and truly enjoy the world the way I used to.

With today’s successful neurology followup, I’ll have to make peace and enjoy calmer MG days. Those days will have to serve as my “vacation,” my “exotic travels,” and my general “good times” until resources catch up.

Freedom from the cube

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The view from outside the cube.

It has been six months since being liberated from a cube in an office setting that I often found limiting and, at times, downright painful.

I left the comfort of a steady paycheck and 100% insurance coverage to save my life—literally. I knew if I tried to stay there I would not survive mentally or physically. Living with myasthenia gravis and a few other autoimmune issues has made me realize that I have to be my own caretaker, advocate, personal attendant, nap enforcer, chef, and employer.

Yes, it has been challenging financially and mentally, but the payoff has been a lot less stress of the office/bureaucratic kind and the freedom to work from my sofa, a café, a picnic table in the park, and wherever else my heart desires. I was determined to remain in the same line of work I’ve been in, but do it on my terms. It’s working! It’s been a slow start but a slow start is better than no start. Yes, I’m playing catchup with a few bills that fell behind during the income lapse, but I’ll eventually be back on schedule.

I have not experienced an ounce of guilt about having to lie down due to sudden weakness or fatigue while in the middle of a project. I don’t have to ask my supervisor if it’s okay for me to leave for the afternoon because I’m not feeling well. I now simply set my laptop aside, grab a pillow and lie on the couch  or walk to my bed and fall into a slumber for however long. As long as I meet a deadline for a project, it doesn’t matter if it’s done in one- or two-hour+ chunks. It will be completed.

I was sitting and working for a couple of hours in a café last week when an elderly man came in and ordered a mocha. He sat across from me. We ended up chatting. He told me that he thought it was really neat how so many people could work in different locations now. He said back in his day you were tied to your desk in an office. I commented that it’s nice actually being able to choose your “coworkers” with this type of setup. In an office, you’re stuck next to the annoying coworker who talks too loud or who interrupts you from a deep concentration for no real reason. In a café, you can plug in your headphones and ignore the people around you and not be concerned with being interrupted. At home, unless you have unruly family members or other housemates, it’s a pleasant environment free from distractions.

Working from home is not for everyone. Some people MUST have social interaction. I have plenty of interaction with the people for whom I’m contracting/consulting as well as my break periods when I text, email, and wander the hallways of social media. I’m not lonely nor bored. It’s PERFECT!

Here’s to freedom from a cube and continuing a forward march.

PS: MG seems to be liking this lifestyle. I haven’t had to punch it in the face lately. 🙂