Photo by David Ralph Johnson

"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.

YOU.
YOU.
YOU.
YOU.

And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.



I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.


Peace,

Theresa

 

Who do I see?

I seem to be thinking about reflections a lot these days. It was only two weeks ago I posted about the reflection of my oldest daughter Aleela  And then more recently, in my post entitled Out Of Bed And Into The Yard, I spoke of how Life truly is a reflection of ourselves - our inner most self.

Over the past week or so I have had to spend a lot of time at the University of Minnesota Medical Center. I try to plan all of my appointments on one day since the facility is located in Minnesota, and we live in Wisconsin. Plus, my husband is my official chauffeur as well as personal care attendant. By combining appointments we minimize the amount of time he has to be away from work.

Since I am still quite weak and pain is a constant issue, he unloads me straight from the car to the wheel chair. Me, my purse, my water bottle and up until this past Wednesday, my lovely Foley catheter...or "pee-bag" as my endearing children call it.

Sometimes, if I am not too worn out, we have stopped at the grocery store to pick up a few things on the way home. On occasion, I have wanted to go in with him. There, he unloads me straight from the car to the motorized shopping cart. Me, my purse, my water bottle and my pee-bag. This was instantly noted on facebook by one of my daughter's friends - "Hey, saw your mom today at Walmart. She was driving the electric cart!"

This might all seem quite innocuous. In fact, if I were about sixteen and being the goofball that I was, it might actually be kind of fun. Kind of like wanting to drive a golf cart around on our town streets...or the lawnmower. Or it might even feel a little bit good, like when I got crutches for the first time. I couldn't get to school quick enough! Oh, the drama!

One of the most common issues among many people with chronic illness is the "invisibility" of it all. There are a host of sites out there that address the issue, like Invisible Illness Awareness, But You Don't Look Sick and Not All Disabilities Are Visible. To struggle daily with debilitating illness, which can at times be life threatening, and to hear "You LOOK GREAT", is most definitely a mixed bag. I remember reading a story on the issue about a year ago. The women writing had been suffering from Lupus for over fifteen years and had found little in regards to support from friends and family. And this women suffered from a very serious form of Lupus, Lupus Nephritis, in which the kidneys are damaged and eventually can lead to kidney failure. She had almost lost her battle twice before undergoing a kidney transplant. She wrote her story after experiencing a broken leg which required her to be in a wheelchair for four weeks prior to using crutches. The sad part of her story was the fact that she felt she had received more support over her broken leg than she had received in the accumulation of all fifteen years that she had suffered from Lupus. I won't get into all the details of her story, but I must note that she was a remarkably amazing women and used this knowledge to improve not only her own life situation, but the lives of many others.

I consider myself extremely blessed in regards to the support I get from my family and friends, as well as the vast network of friends I have made through One Moment One Life. Not once, in all the seconds of this relentless illness, have I ever felt lonely or longed for support that was not there. My heart aches for those that travel this road alone. I can not imagine it. But I have understood the complex balance of feeling so terribly sick, yet striving to remain positive and not become a burden for those that surround me. Don't get me wrong - I am in no way stating that I think we should ever "be" something that we are not. But those that struggle with this issue know the importance of taking care of our loved ones as well. I think of all the mothers, wives, sisters and daughters out there that force themselves to get up and showered each morning, struggling to stand up from the weakness that pulls them down, pressing make-up onto places that refuse to be covered - just so that we don't "look too sick" and cause another day of worry to those that love us. All the while, longing for just one day free from the pain.

So, I was surprised and a little bit confused by the emotional process that I went through when traveling the halls in a wheelchair the past few weeks. Having not "lacked" in need of support or understanding, I was not surprised at my sense of neutrality in that regard. In other words, it didn't "feel good" to "look sick". There was no vindication. But this is what did strike me - and has been with me ever since  -

The eyes of those looking back at me.

I couldn't figure it out at first - what I was seeing or how it was affecting me. And maybe I'm still off base or a little impaired by my own situation. But this is how it felt

We are afraid of what we don't know. We are afraid it could be us.

I don't like riding in the wheel chair. I especially did not like the pee-bag and tube that I tried to hide in my beautiful home made bag that my daughter Amanda made for me. I know that the embarrassment that I held for myself affected my demeanor. I could feel it in my posture and the tone of my voice as I spoke to people. Once I realized what I was seeing, there was a change in me. I felt compassion for those that I was passing glances with. Like I no longer wanted to match hasty glance for hasty glance. I wanted to reflect the beauty that I was seeing. The human being I was seeing deserved a human being in return. And in those moments, I felt completely connected, on a level that is difficult for me to even explain.

I want to say that I don't know what changed. How I looked at the world or how the world looked at me? But I do. Because I believe that the world IS a reflection of ourselves. That Nature, and life in general, DOES wear the color of the Spirit. And in finding ourselves in others, we find compassion. And in finding compassion, we find ourselves.

What does your world look like to you? Who do you see reflected in the eyes of those you meet...
or in the mirror in front of which you stand?

I see you, and you are beautiful.    

 

The love of my life.

Artwork by me. Inspired by my dear friend.

View here!

In thinking about how this happens, something dawned on me the other day while reading  Pema Chödrön's The Places That Scare You. I mentioned a couple of posts back that she talks about emotions needing a story to proliferate. What she means by that is that whatever emotion we are feeling - whether it be anger, loneliness, fear or even emotions such as joy or passion - those emotions cannot exist if we are not telling ourselves some sort of story. If I'm really feeling sick and stuck in fear, I may be telling myself things like, "I'm never going to feel well. I haven't felt good in over two years. I can't keep doing this. Pain is taking away my life. I don't do anything. How will I get what needs to be done, done? The doctor's don't understand how this is impacting my life. I'll never be normal again...."  Consciously or unconsciously, I am telling myself some sort of story. Why? Because I get something out of it - temporarily. Kind of like a piece of chocolate cake in the middle of your diet. Short term...heavenly! Long term...not so good. It feels good to sympathize with ourselves. But in the end, it only keeps the negative emotion alive.

What dawned on me is that when I find myself sitting there, out of breath, this is exactly what I am doing. I have stopped being present in the moment and I have gotten myself all caught up in some story. The solution? Pema says, "Drop the story line and just abide with the energy." Ouch. We don't like to do this! I don't like to feel pain. I don't like to feel lonely. I don't like to feel hungry. I don't like to feel hurt. So what do I do? I try to get some bit of relief by telling myself a story. And it never works.

So, this week I put my enlightenment to the test, on two different occasions. My first opportunity was after IVIg on Monday. On a scale of one to ten, one being a fairly uneventful infusion and ten being plain old miserable - this one ranked at about a nine. I felt sick during the entire infusion and the days that preceded it were filled with nausea, digestion issues, headache and pain. At one particular point I found myself spiraling downward, contemplating all that needs to be done this week in preparation for a graduation party and a week filled with company. The story was pretty good.

My second opportunity was after hearing something less than desirable about myself. Whether or not there is validity in the statement has little impact. No one wants to hear about his or her shortcomings - real or not. It's painful to think that we are not perfect in the eyes of those we love. Especially our children. And it's easy to get caught up in trying to figure out the why or in trying to prove one's innocence. Another pretty good story.

In both situations, I was able to realize what I was doing and give the whole "abiding with the energy" business a shot. Was it difficult? You bet! Was it worth it? Absolutely!  First of all, stopping the story takes away a lot of the energy. In the situation where I was feeling sick, the minute I broke free of the story I felt a distinct peacefulness fall over my body. The pain was still there - in fact, there were moments where it seemed more intense and the temptation was to tear up and start the whole "woe is me" line - but I caught myself. And the more I was able to just abide with the energy of not feeling well, the more I was able to breathe. Soft, gentle, slow breaths. Just being.

In the situation where I had gotten my feelings hurt, stopping the story shortened the whole ordeal dramatically. Not only was I feeling better sooner, I did not aggravate the situation by responding inappropriately or making false assumptions. I realized the situation for what it was, allowed myself to just feel the energy of being sad, and moved on. Because I did not respond out of my hurt, because I was in control of my breath, a wonderful conversation later ensued and it was a cherished opportunity for compassion and growth.

"Inhale. Exhale. Breathe in Life." I am so thankful for these words and the reminder they have become for me to be present in this life. They have inspired me in so many ways - the books I read, the poetry I write, the paintings I paint. Breathing means being present. Being present means recognizing what's going on in my world. And as Pema states, "Never underestimate the power of compassionately understanding what's going on."

Blessed breathing to you.

Some days come much easier than others. That's a pretty generalized statement, I know. But so true, none the less. Some days life just seems to work out in our favor. And then other days...well, we just wonder, what the heck? We attribute it to things like bad weather, getting out on the wrong side of the bed and the infamous "them". You know, "them". Those people. The ones that work for the IRS, the ones that move our stuff, the ones that hide our socks and purposefully find us on the highway when we are in a hurry. Those people.

I write in jest. But for people living  with chronic diseases - those "some days" cannot only be frustrating, but they can be painful, relentless and frightening. Those "some days" come when you least expect them. They come in the middle of your best days, they come at family gatherings, in grocery store isles, in movie theaters, at the gas station, in the car, while getting your hair done, on walks with your children...they come ten minutes after you have just taken a shower, curled your hair and picked out an outfit to have lunch with a friend. In fact, the best way to insure their arrival is to make any sort of a plan at all.

Last Friday I began having one of those days. The first indicator was an increase in neuropathy. Numbness and tingling, shooting pain, unable to balance on one foot, right hand doesn't work 'right'. And then the stiff neck...and then the headache...and then the vision problems...and then the diarrhea...and then the painful joints and muscles...and then the pancreas pain and eventually my heart starts to beat irregularly, sometimes leading to tachycardia. Not a pleasant experience at all.

I managed through the weekend pretty well. That's a Mom thing. Taking care of my family is good for me. It's good for my soul and it's good for my mind. But by last night, things had progressed and after only a couple hours of sleep, we were contemplating a visit to the ER. Have I mentioned how much I despise emergency rooms???

We made it through the night and were at the hospital by 7:00am for an already scheduled appointment, followed by IVIg. I figured if there was anything that needed urgent attention, they would catch it. After a lot of blood work and a couple of phone calls to my doctor's, it was agreed that we could proceed with IVIg. Being that this is also my chemo day... well, it was just one of those days. Except...

This is what I came home to:

  
A couple of months ago I finally made the decision to have someone come into our home on a weekly basis and help me with cleaning. It was a very difficult decision for me to make. Learning how to give up control take care of myself has been one of the hardest things for me. Little did I know that the women on the other end of that phone call would be such a beautiful person. Within moments of our meeting, I realized what a blessing Roxi is. Simply having her walk in the door, I am filled with the positive energy that emanates from  her. Honest, kind, compassionate and SO easy to talk to, there is never a lack of things to say.

Somewhere in between cleaning houses, spending time with her children and grandchildren, church work, gardening, yard work and taking care of her own family - she prepared this meal for us. And this meal is not just any meal. This meal is a casserole made with fresh organic beef off the farm and tomatoes from her garden, canned pickled beets, home made buns and frozen sweet corn...from her garden, of course, and the most amazing looking home made apple pie I think I have ever seen. WITH apples from her trees!


Mother Teresa has a quote that says, "We cannot do great things on this earth, but we can do small things with great love".


This was an act of great love.

And this day, this "one-of-those-days" kind of days, I am thankful beyond measure.

Oh, and by the way....

It was delicious!

Photo by David Ralph Johnson

This is what I have been doing lately. I didn't actually know that I was doing this until today. Twisting and turning and pulling, trying desperately to "arrive". Thoughts flood my brain. Frustrated by my minds inability to hold on to or organize any ideas. Discouraged by the barren screen in front of me. Exhausted by disease. So much to say.

So much to say.

I've begun this writing at least five times. Wonderful, glorious thoughts have come to me in my moments of reading and mediation. I want desperately to share. A Mother's Day, full and beautiful. Reflections of daughters' and relationships and the unconditional love that surrounds them. Hope, and the excitement that comes with experiencing 6000 people gathered together under the dream of One Heart One Mind One Universe. Sadness, by the suffering that our judgments bring.

These things keep me awake. So many things.

My ego and I, we work devotedly to each other, under the best of intentions, to bring our message. Twisting and turning and pulling in every direction. Not listening, not listening, not listening...

Home is a good place to be.

There is a lot packed into that little statement for me. I have always enjoyed being "home". Especially when I was working, it just seemed that there was never enough time to just "be home". In fact, I used to always say that if I were independently wealthy and did not have to work I would be just fine finding plenty of things to do at home. The creative side of me had a never ending list of possibilities...cleaning (which I love doing), yard work, remodeling, baking, painting, writing, reading, running... the list goes on. Never enough hours in the day.

Becoming chronically ill has had an enormous impact on my "being home". For one, many of the things on my list of possibilities are, well, no longer possible. Two, other than getting out for doctor's appointments, hospitalizations and occasionally visiting family, I am pretty much stuck at home most days. Hour after hour, day after day, week after week, month after month, year after year. And this winter seemed especially long. So when we made the decision to visit family in Florida, I could hardly get my bag packed quick enough.

And then reality sets in, and one quickly realizes the mixed blessing of going on vacation. Travel, for anyone with a serious health condition, presents a number of difficulties and potential problems. The simple act of packing alone becomes a major endeavor. What would have taken me an afternoon to accomplish now takes me days. And the question of "what if" becomes more serious than just preparing for a rainy day. Two days of my packing were consumed with documenting all of my doctors, their names and addresses and emergency numbers. I then needed to come up with a complete list of all medications (including brand names and dosages - of which there are thirty-three different ones), signed release forms and a copy of my living will. Between the medical paperwork, reservation confirmation papers, airline tickets and car rental information - we almost needed to pack a two drawer filing cabinet just to go! Add to the mix my difficulty keeping track of things and general state of "fog" and this part of the preparation becomes quite stressful.

Once the paperwork was taken care of, I then needed to organize my actual medications. Not only did I need to plan out each days hourly "cocktail", I needed to plan for emergency situations. Pain medications, muscle relaxants, anti-nausea medications, Epinephrine injections, inhalers, emergency steroid injection packs, pancreas and GI medications, laxatives and antibiotics...just to name a few. These are all the medications that I do not take on a daily basis, but are needed when things act up or I have an allergic reaction. Which could happen when I eat something or get too much sun. I carried my luggage on the plane to avoid the ridiculous baggage fees. I wonder what the TSA people thought as my bag passed by for their viewing pleasure!

Eventually I got to the issue of clothing. Trying to pack for hot weather, yet making sure to not expose too much skin presented a few challenges. I did find a nice cotton long sleeve blouse that I had stored away years ago that became my daily cover-up. Most days I have difficulty keeping warm, so this worked out perfect. And at night, I just covered up in blankets and towels.

Probably most difficult of all are the actual days of travel. There were a couple of times this go around that I simply felt like traveling was not an option for me any more. I forget how much time I spend sitting or laying down while at home. If you think about it, once you make your way into the airport you are in a constant state of motion. Because I deal with extreme fatigue issues, simple tasks like pulling a suitcase or going through the TSA check point (lifting things on to the belt, taking off all your "stuff", gathering things all back up again) or walking half a mile to a gate are completely overwhelming. Once I reach that point of exhaustion, my ability to think clearly becomes significantly reduced. Keeping track of my ticket, driver's license, cell phone and everything else that needed to be emptied into a container became a task that left me right on the edge of panic. If these were the days when my children were younger, I truly believe that traveling in this way would not be a possibility for me. Thankfully, Dave and the kids were always one step ahead of me and there to help whenever I needed it. Often times offering before I even asked. I am so fortunate to have such a compassionate family. Where thinking of others is something that comes natural. Kids, I am so very proud of you!

Pure exhaustion.

And then there is the task of actually getting ON the airplane. When my butt finally hit the seat I felt like I had just completed mile 20 of Grandma's Marathon! Unfortunately, the welcomed relief that comes with finally sitting down and sitting still is soon interrupted by the pain and stiffness of rheumatoid arthritis. If there is one thing airplanes these days are NOT conducive to, it's moving. At all. Between the fact that the seats are now only six millimeters apart from each other and every flight is overbooked - and the fact that everyone brings their luggage on the plane to avoid the enormous baggage fees - there is absolutely no room to even wiggle your toes. The whole flight I was thinking, "Maybe I should take another baby aspirin, just to make sure I don't end up with a blood clot!"

Grateful.

By the time we made our connecting flights, landed in Tampa, picked up our rental car and found our way to the resort, I was, as my husband says, "On the brink of the edge!" Never has a hotel bed felt so good! From that point on, things became much easier. The resort that we stayed at was more like an apartment than a hotel room. So within a few hours Dave had gone to the grocery store and completely filled our cupboards and refrigerator with all sorts of good things to eat. We purposefully do not make "plans" while we are in Florida. Especially this time, since the priority was to spend time with Dave's sister Linda who is preparing for a stem cell transplant. This makes it much easier for me to listen to my body and rest when I need to. Our room was situated very close to the beach, so that made it easy for me to enjoy the ocean when I felt up to it. Most mornings I would walk down to the beach before the sun came up to drink my morning coffee. What a pleasure those moments were for me. Sitting there, sifting the sand through my hands, contemplating my place in this amazing world of ours. These moments were very inspirational for me and I am excited to write about some of them in the days ahead.

One of the things that made this vacation a success for me was my ability to let go of expectations. Last year when we brought the kids down to Florida I really struggled with being depressed. I think that somewhere in the back of my mind I had this unrealistic expectation that I would miraculously feel better once we arrived. It kind of reminded me of the first Christmas that I did not receive any toys as a kid. All excited and then somewhat let down by the reality of it all. Being grown up isn't as much fun as I thought it was. Well, being on vacation when you are sick is still "being sick". What I needed to do, and what I was successful at doing this time was letting go of what I had experienced in the past as well as letting go of what I expected the vacation to be. It really was a gift to me this year. I think I am finally reaching a certain level of consciousness. I am able to purposefully decide what kind of relationship I am having with the present moment. Do I want the present moment to be my friend or my enemy? The present moment is inseparable from life, so by being conscious in it, I allow myself to make the call as to what kind of relationship I want to have with it. The minute I make the decision to be friendly to the present moment - aware and thankful - my life changes. One little decision changes my entire reality.

J. Krishnamuriti was a great Indian philosopher and spiritual teacher. He spoke all over the world for more than 50 years attempting to convey through words this concept that is really "beyond words". At one of his talks towards the end of his life he surprised his audience by asking them if they wanted to know is secret to life. It is said that everyone became very excited and alert to finally  know this master's key to understanding. "This is my secret," he said. "I don't mind what happens." I'm sure that there are many people that did not understand this - maybe even more confused than they were before. And quite possibly you are thinking the same thing. But to me, this statement is SO profound. When I don't mind what happens, that means I am in total alignment with what "is". To be in a relationship with what "is" means to be in a relationship of inner nonresistance with what happens. It means to not label anything as good or bad, but to let it be. Of course, it does not mean I no longer take action to bring about change in my life. Quite the contrary. When the basis of my action is in alignment with the present moment, then my actions become empowered by the intelligence of reality - of Life itself. And making decisions based on reality are always much better for you than making decisions based on illusion.

"I don't mind what happens."

And you know what - it worked. Every day was a gift. I was much less stressed (stress is the leading cause of flare ups) and able to listen to what my body needed, based on the present moment. Not getting tangled up in what I thought I should be doing, or what my kids needed me to be doing, or what I felt my family expected from me. I listened to the moment and based my actions on what that moment was telling me. And fortunately, I have a family that supports that!

The kids resting in the shade with me.

Being able to rest while on vacation made the impending doom of traveling home much more tolerable. It was still as exhausting as getting there, but I am fairly confident that my ability to take care of myself is what kept me from getting sick along the way. I am still recovering - in fact, it's day three since I returned home - 4:30 in the afternoon on Friday - and I am still in my pajamas! And very thankful to be here. Funny how that is. Before going on vacation I was really beginning to wonder if maybe I had become depressed. Like maybe I should talk to my doctor about it. But things look so much different now. It helps that it's 60 degrees outside, my window is open and I can hear the birds singing. The inside of this house seems to have lost it's winter ambiance and adorned itself with the reflections and smells of Spring. I guess you can say that being away made me appreciate what I have. And according to this very moment in time...

I have everything I need.

My husband, David.