Men, Gypsies and a Funeral

Posted on March 11, 2015 by tresswann

As I said, Joebe passed away last week. He always called me a Gypsy. And it wasn’t always positive. He used to tease me that I could and did move all my belongings in a cargo van. I had nothing and was free. Since I married this time, I can no longer move in a cargo van. I am weighted with both possessions and responsibilities.

Joebe said I was a gypsy and committed to nothing. He was of an age where he also meant it in the non PC sense of it. I was amoral, free, uncommitted. I remember the gypsies of my youth. I spent the first few years of my life in Coney Island. The Gypsies would come every spring. We were always warned that they stole little children and we had better stay close.

Sometimes I didn’t mind when he called me Gypsy because it meant that I was still holding onto that part of me that was uniquely me. Lord knows he tried to change me. Like I have said, I have been trying so hard to remember the happy times. I really can’t. Every memory just twists.

I met him dancing. And he was a great dancer. That’s what won me over. But we didn’t dance because of his jealousy.

Also, after I left my first husband, I wanted to go out with a man who took me to dinner with tablecloths. My first husband’s idea of dinner out was Fuddrucker’s. Joebe took me to nice dinners but they were unpleasant as he always accused me of flirting with the busboy or the waiter. It became easier not to go.

I have always worked with men and gotten along very well with them. It’s part of the all boy college deal. During that time, I worked with men and I used to go out with them for what we called burgers and a belt. I used to stay at my parents and tell Joebe I was eating with them. With anyone else I could have and would have told the truth.

At his daughter’s rehearsal dinner, I sat next to her, not her mother. By this time, I had left him. But he was always telling me “Pretend to be a family.” He had had issues with his daughter and had not wanted to go to the wedding. I insisted but I was the one who walked out of the dinner.(I did go to the wedding) She is 10 years younger than me almost to the day. So, I would say we really didn’t get on.

Sunday, I walked into the funeral home. I think it’s the first time I saw her since her wedding. She had been the one to initially call me and tell me that her father was in intensive care and she wasn’t sure she had the right person. I got her brother when I returned the call. She broke away from the people she was with and grabbed me and began to sob. “Susan, when we went into the house, there was a huge picture of you in his bedroom. My dad always loved you. He never stopped loving you.” This was so hard to hear. First of all, within weeks of our getting together he practically demanded that I tell him I loved him. Different generations – what’s love got to do with it. I was the gypsy rolling with the tide, looking for my good time. I never told my first husband I loved him. It’s not something I do. I hold love close to my heart, my hard gypsy heart.

It has made me reflect what impact do we really have on others? When I left my first husband, he was more upset I thought about losing the curtains (I took them off the windows) than me. Joebe told me we were supposed to get married and he was going to be short the money I gave him towards rent. We did things together afterwards. i.e. daughter’s wedding but I wouldn’t say we were friends. I do love my friends. I can’t ask him what was going on because he is dead. It’s sort of like an open window but one that you really can’t see through.

Of course, there was the rest of the family to see. I did love his granddaughter and losing her when I left him broke my heart. I kept distance from my now husband’s children and his nieces because I didn’t want that hurt again. I am loosening up a bit and admitting that we can love each other. Seeing Gabby almost made me cry. She’s just about grown up and of course, doesn’t remember me.

Now, men. My husband and I have had many problems and we have come out alright. Our marriage is strong. He stood next to me and listened to hearing that another man had always loved me. He walked into a room of strangers to him that had been family to me. He literally held me up. No cane and no one said anything about my walking. He totally supported me in all ways.

Someone who has this condition said something along the lines of how do you forget you have this? Well, Sunday once my husband helped me in that door, my condition was the last thing on my mind. I am larger than this.

So, I am beginning to have memories, not bad ones, just memories. I hear his voice in my head. And I am beginning to realize that I’ll never see or hear him again. That’s the way this works. He’s not the first relationship that I have lost but he was the only one I lived with. You always think you will see them again and you can be like Bellbottom blues or just surviving. I was always tickled that I survived Joebe. Now, there’s this unknown area.

And here’s what’s weird. Joebe gave me amber earrings. I wear them at least once a week. I went to put them in on Monday and one fell on the floor and shattered. Gypsies and dreams.

Mortality, Perspective and Balance

Posted on March 8, 2015 by tresswann

Mortality has been on my mind a lot. It’s a milestone year for me and I am feeling it, particularly since my mobility is impaired and seems to be worsening. I hope I have many years ahead of me, good years but you just don’t know. I live fairly locally to where I grew up so I was reading the local obituaries to see whose parents had died. And then people’s ages were getting too close to mine and I even knew some of them. It started to drag me down so I stopped.

Last week I received a call that one of my exes had a massive heart attack and was in a medically induced coma and the prognosis was not good. This was someone I had lived with for a few years. When I left him, he said “But we were going to get married” Nice of him to let me know. He wasn’t the first. I left someone else who then showed me a polaroid of the engagement ring he was paying off on for me.

Joebe passed away on Thursday night and I got the call Friday. I really thought he was stubborn and cantankerous enough to come out of this. He never regained consciousness. This is who he was, he thought he was having a heart attack so he drove himself to the doctor. Just what they tell you not to do. My husband has been upset because all week, of course, Joebe has been in my thoughts. I have been reminiscing. He doesn’t mind the reminiscing. They are not happy memories. He does not like that. I cannot help it. I am trying hard to remember some happy times. He was controlling and emotionally abusive. It is what it is and he was physically abusive just that one time. I tried explaining to my husband that remembering the bad times is not bad. I put on the card for the flowers “You changed my life” and he did. I learned all kinds of things about myself. I learned how much stronger I was than I thought.

It’s ironic, it’s March. I met him in March, 21 or 22 years ago. I never go out on St. Pat’s but a friend, Joe S asked me to go with him as a favor to some event or other. Joe T called and asked me to hang out so I said next week. Next week, I went to hang with Joe T and met Joebe. My parents couldn’t stand him as he was much older than me. I was living at home after my first marriage broke up and he would call and say “It’s Joe” and they would say “Which one?” Drove him insane. He was jealous and insecure. He did make me look at where I was jobwise. I had fallen on really bad times when my first marriage had broken up and was answering phones. I applied for another job like that and he told me if I kept on looking at the same jobs I would be in the same place. I left him when I got the job I have now. At the time I jumped my salary by 50%. With bonuses the first year, I made more than he did. We never really stopped talking and this truly irked him, a man of his age being bested by a little girl. He never thought I was very smart and I am. I am one of the first women at an all boys school and he always said that I got in because I was a girl. We went to a 25th anniversary of the admission of women and the former president said that admissions my year were blind. It was incredibly liberating. Joebe scoffed and said they lied.

He bought me a house. One of the reasons he bought this particular house was the day we looked at it, three swans floated up. It was on water and I am tresswann.

I am preparing to go to his funeral this afternoon with my husband. My husband always maintains that Joebe was my husband. I lived with him longer than I did my first husband and had more of a relationship with him.

I have kept on saying all week, this is weird. This afternoon is going to be weird. I was at the wedding of both of his children, the christening of two of his three grandchildren. He was one of 5 brothers. The family liked me. I have not seen these people in years. I am going to have to walk into this with a cane. My husband says to leave the cane behind and he will hold me. I am blessed. Things work out the way they are supposed to work out. I had a really close friend die when I was with Joebe. He knew him. He refused to come with me to the wake or funeral. Walking in alone was one of the hardest things I had done up to that point in my life. See, what doesn’t kill you will make you stronger. Today, I will not be alone. I will be supported by love.

So, perspective too. On Thursday, I received a call from my agent indicating that he had been told I am not getting a raise for this year. Can I say livid is too mild a word? Yes, I worked remotely for most of January and February but I put in mega hours. I give heart and soul and do excellent work. I am not just saying this. And I am hurt by this. I will address it when I get into the office this week. But coming in conjunction with Joebe’s death, it’s time to take another look. If they think I am doing a less than adequate job which is what a non raise indicates to me then I can and will cut back. If I cut my hours, I cut my income. What’s money at the end of the day as long as the bills are paid? Working less hours will let me get home earlier and when I am home earlier and not putting in extra hours, I can do more “me” stuff. How about the gym? How about art and writing?

I am a Libra and as odd as it sounds, I need to be in balance. I have been out of balance. This manifests itself in my health. Oh, and a side note on stress, I left Joebe and started a new job all in the same month, not too crazy. I am moving towards this milestone birthday with trepidation. I am taking these two events as a sign to get back in balance. Maybe regain my physical sense of balance. We truly do not know when our last day will be. I don’t want the rest of whatever time I have to be filled with regrets or what ifs. Carpe Diem.

Falling Flat on My Face, February and Fragility

Posted on March 1, 2015 by tresswann

February has been a hard month for me. I ended up going into the office only 7 days between the extreme cold and the weather. I am lucky to be able to work from home and got tons done. Also, I welcomed the rest, few 4:15 a.m.s. Excellent. The flip side is I have a tiny house and even to get up and walk to the bathroom, I don’t get in enough walking. I work in a building where each floor is a city block. Depending on what my schedule is I can literally walk miles at work. Ok so now it’s with a brace and a cane but still.

Went to work on Wednesday and took a cab in the morning. The bus stop was icy. I went out to lunch but it was only across the street. My New Year’s plan which has been derailed by the weather is to go to lunch once a week. I need to reconnect myself. I swore when this whole thing started that I wouldn’t let this condition/disease confine me or define me. And just like my ability to walk, it gradually took over. I am fighting back. Wednesday night I felt ok and thought I would do my usual Grand Central, Times Square Penn Station deal. I left work early so I could take an earlier train. It’s on a track with an escalator so it’s closer and I walk less. Well, I started to fall apart in Times Square. The train is the 4:12, I was on escalator at 4:11 and the bartender literally held the door for me. I struggled into a seat. The ride is an hour and that is enough recovery time for me. My station is the last stop and almost everyone is gone. I got up and was in the door when the train pulled in. I got off carefully (I have to hold on) and thought Ok that’s good. The next thing I remember I was flat on my face with gushing blood. All of a sudden, thankfully, there were a lot of people on the platform. Someone asked, “Are you alright?” Normally, I am very perky and reassuring. This time I had to say, I don’t know. Two many literally lifted me up as if I was a rag doll. Oh, and another thing. I am not prone to profanity but after saying I don’t know, I added, “I really f–ked up my face, didn’t I” . I have not fallen on my face in more than 25 years. The last time I did I was 24, drunk and dancing in a bar in the Hamptons. Life does change. So they raised me and my gushing face up. A businessman provided tissue and blotted at my face. I thought I had literally split my lip. Nope. I am blessed and lucky. And my legs felt great. My face took the brunt of this fall. Now, the railroad guy comes out of the train. They want to get me medical attention, file a report, get me a cab, call someone. No. My husband doesn’t drive. I refused. This station doesn’t have an escalator or elevator so I gimp down two flights of concrete stairs normally. A man offered to help me down the stairs. I had a knapsack and a pocketbook. He showed me a badge and said he was a federal officer so my things were safe. I didn’t care. I said anyone is welcome to it. He was great! He helped me down the stairs which did have patches of ice. And he got me into my car. Husband freaked. Yes, it looks like I went rounds with someone. He thinks it reflects badly on him.

Then I went into work the next day. This is the kind of place I work in, people came in and said nothing! I have a swollen bloody lip, a scraped bloody chin and huge bruise under my chin. Husband thought it would be a problem for me. If I fall, will they renew my contract? Actually, I felt worse when I got into work. It hit me, all the might haves. I have been so lucky and so blessed. This could have been so much worse. Thursday night, there was almost no one on the platform.

As I have struggled this week I have been thinking. I changed the way I eat significantly. Okay, as I have admitted, I have not gone full force. I still eat sugar. It’s significantly reduced. Dairy and eggs radically down. Never much of a red meat eater but more minimal.

I am getting worse not better. And I hate when people try and whitewash it. And I know I am lucky, truly. I am still walking and I am not going to stop. This month was rough as I couldn’t literally get out of the house. That meant much less walking though I did try to do at least 30 minutes on the stepper every night. I couldn’t get to Zumba or the gym. In fact, I was planning on going to the gym Wednesday night and breaking the ice so to speak. So, amp up the food plan and the exercise. Keep moving forward.

On to fragility. The cell rings yesterday and I am working. I see it’s my one of my exes. It’s a wild, wild life. I keep in touch with all my exes, all the live ones, except my first husband. I do have two dead ones. Stories for another day but both died when I was young, one of AIDS, one of cancer. And yes, for years I had the spectre of AIDS hanging over me. The one after them said I am never breaking up with you. Men who leave you die. Well, I left him and he’s still alive. After that, I was the one that did the leaving. I lived with the ex whose number showed for several years. It was not healthy. He is significantly older than me. We would have conversations and he would mention an event and ask if I remembered. My response was usually “I was three!” or “Uh, I wasn’t born yet.” We maintain cordial relations but he still can be controlling and domineering. I let it go to voice, picked up the message and it was his daughter saying we think we have the right person, you lived with my Dad, he’s in cardiac ICU. I called back immediately and reached his son. He told me that ex is in medically induced coma, had massive heart attack and they are reaching out to the people that were important in his life so they are not surprised. I am devastated. He’s tough and ornery so I am not counting him out . It’s ironic. He hit me once in the face and the next time, because there always is a next time, I punched him in the chest before he could touch me and knocked him out. There never was a next time after that. He said “You could really have hurt me” I was “Exactly”. I left. We made our peace.

This is all, the fall, the deterioration and the ex, making me feel fragile. I am tougher than this. It literally hurts to smile right now but I am trying. I can and will rise again.

Fatigue, Fantasies and Husbands

Posted on February 22, 2015 by tresswann

I fantasize about sleep. I count days and hours until I can sleep. I roll over in bed and think either this time tomorrow I’ll be sleeping or this time tomorrow I’ll be awake. I have to get up for work some time between say 4:10 a.m. and 4:30 a.m. four mornings a week. One of the effects of the condition I have is supposed to be fatigue. However, my doctors say with the hours I keep, who can tell? I see their heads nod and eye droop when I describe my hours and my schedule. They say anyone would be fatigued given that schedule. And I am getting older. It’s just a fact. I have read that as we age, we need less sleep. NOT! Ok, so maybe we don’t need it to grow, that doesn’t mean our bodies and minds don’t want it.

I keep memories of a good sleep like notes on a good bottle of wine. I still remember the sweet deepness of sleep the night of Hurricane Sandy. I had one almost as good the night of a blizzard last month.

I guard my sleep ferociously.

I have been to the office only three times this month. Yes, a few hours more sleep but much less walking. Here’s my vicious cycle, the less I walk, the less I am able to walk. We have been trying to compensate by having me do the stepper every night but still I have been coming in at most around 5,000 steps. A normal day for me at work is over 7,000 and I used to get to 10,000 or more. I did go into work this past Thursday and could barely walk. It was bad. My husband doesn’t understand that I just can’t stop when I am working remotely and do 15 minutes on the stepper. Plus, it’s not the same as walking. I have tried to get in 30 active minutes a day.

Yesterday, we set up the treadmill upstairs. My plan is to go on it in the morning when I drink my coffee. We’ll see. Yesterday I struggled to do 5 minutes on it. My goal for today is 6 minutes.

Confession – I have been lax with my PT exercises. I was really on it for awhile and then it just started fading away. I was doing abs every night and then I fell. It hurt too much. I am hoping to start again this evening.

Cut to last night. 3:50 a.m. Husband gets up. “I have been thinking and I have decided”. This is when I call him Jack because he sounds just like his father. ” You know I dream things through, you know how I used to help you with your exercises? Well, I really can’t now because of the operation”. Then he went through all the exercises I am supposed to do and what he could or could not do. Told me I couldn’t do 10,000 steps today as I had only done 3500 yesterday but I would do 6000 today. I would do the PT twice on weekends but not during the week as I certainly can’t get up before 4. And maybe, he will create a spreadsheet to track everything. Now I know he’s talking in his sleep because spreadsheet is not a word he uses. He has the remarkable ability to have complete literate conversations when he is completely asleep. And I am looking at the clock thinking “this time tomorrow I will have 20 minutes more to sleep”. I can’t hit him because of the operation. I drifted off. This morning he has a vague recollection of the whole thing but says it goes to show I am always thinking about you.

Valentines and Visions

Posted on February 14, 2015 by tresswann

Last night I was in the recovery room as my husband was coming out of anesthesia, he looked at me and smiled and said “I am glad. We have been through so much and we are still here”. And it’s true. We have been married for a little over 10 years and known each other for 12. Sometimes, we joke that we have been through more in our short time together than most couples in years of marriage.

I was thinking about that last night. We have been through quite a bit. Literally, a year after we met my father died suddenly and unexpectedly. I was left with a mother who was in a financial mess, had dementia, though I wasn’t acknowledging it at the time and an abusive brother. A week after my father’s funeral, my husband (we were not married at the time) was arrested at my mother’s house on old charges. This was in the beginning of November. In mid-December, I went for my mammogram and they found a lump in my breast. He was still in jail, my mother was shattered. It was a false alarm. T was released from jail at the end of January. My brother was taking things from my mother and making abusive and threatening calls to me. I obtained a temporary stay away. On April 1,(not an April fool’s as some would have it) I was told my job was being terminated. I was relieved but I was financially responsible for my mother’s household. T and I started going in and out of court fighting with his ex-wife over myriad issues. Little did I know that I was about to become a regular at court, so much so that the court officers recognized me! We married. I got another job, a very good one as corporate training manager for a major retailer. During this period, my mother would call with problems and I would ask her if my brother couldn’t help and I was told “oh but your brother has a job and works” Uh, he’s a truck driver? This put enormous strain on us. My previous (and current employer) called and asked if I could do a project, so I started doing two jobs. The day after I told them, it was too much for me, the retailer filed for bankruptcy and I lost my job – two in a year! My friends teased me that I was off for the summer again!

Nightmare time. I called my mother in the morning and she didn’t answer. Drove over thinking she had left phone off hook or was confused because by now she had been diagnosed with dementia. I found her on the floor with a broken leg. Due to different factors, they couldn’t operate on her for three days nor give her painkillers. My brother went to work. Husband stayed with me as they operated. Brother threatened me in nursing home when she was in recovery and nursing home went along with him. Husband was besides himself. We had to sell my mother’s house whilst she was alive. You know how hard it is to dissolve your childhood home after your parents die? Picture doing it when one of them is still alive.

The summer I lost my first job was when I had my first incident. I was walking on the beach boardwalk and couldn’t. Fast forward a couple of years and continued odd incidents and the doctors started. I received my diagnosis after an inconclusive spinal tap. Like my husband told them, when you don’t know what to call it, this is what you call it.

After I sold my mother’s house we bought a house less than 6 months later. See, the pattern, stress and more stress. And boys totaling cars. The youngest did two in 24 hours. And boys in emergency rooms…

My mum died. What is important is that we had not been together that long. We were still in court with his ex and now also because of our issues. My husband has always had alcohol problems. My diagnosis, death and finances set him off and we entered a series of rehab and relapse.

He was diagnosed with prostate cancer. There were complications.

Everyone told me from when our problems started that I needed to cut my losses. The courts, the counselors, my friends said the odds were clearly against us. And through out all of this, I had this vision of the two of us walking out together, arm in arm, beating the odds. Well, it took longer than I thought or wanted. We came through.

The last time he had an operation, I walked out on him. Yesterday, I was there the whole time. We are truly partners.

So, visions. I told T last week that just as I had this vision of the two of us beating the odds, I am picturing myself walking again, arm in arm on the beach, wearing the clothes I love, dancing, doing the things I love, no limits, no boundaries. It’s just this vision that I am keeping in my head.

Valentines and visions. Love. I believe that is the root of what brought us through. And I am going to make my new vision real. It may not happen when I want it to happen but it will happen.

Not Inspiring

Posted on February 8, 2015 by tresswann

Ok, so I use the spectral leg and a cane, a very pretty one at that. I work in New York City and commute every day. I wake a little after 4 in the morning and am at my desk, smiling by 7:30 in the morning. What most people do not see is the struggle sometimes to make that walk into the office. I count that as one of the upsides of early.

I try and go to Zumba two nights a week. It’s a class I have been going to for several years. And yes, I have been able to do less and less. But I still go. The music connects me with my mother and my family. We played some of those songs when I was growing up. And as a family, we always danced.

I am a person. I am not a condition or an illness.

I hate it when people tell me I am inspiring. With one major exception, which I will discuss in a moment.

I hate when people say ” I don’t see how you do it.” Again, it’s my life. What am I going to do, crawl into a cave of illness and defeat? Why wouldn’t I do it? Where is self-pity going to get me? It’s not going to help or make things better. Ditto the “you are so brave”. Why? If I don’t wake up in the morning and go, what is there? I am not brave, I am freaking terrified. In terms of bravery there is so much more in this world to be brave about other than living a quotidian life. I belonged to a group when this journey started and one of the women had a granddaughter who was 9 and had something wrong with her ankles. If I remember correctly, they were disintegrating. That’s brave. Her family was brave and strong. Me, getting up and living my life is not brave.

I always try and tell people when they tell me I am inspiring that I am not. I do not live nor wish to live a poster child life. This is my life and my reality.

Ok, there is one instance where I don’t mind as much about the inspiration thing. Yes, you Jessica Campbell. Check out her blog MS and Fabulous. When it comes from someone who is going through what you are going through then it’s alright. I am awed by Jessica. There are people who confront these issues daily with style and true grace. They are inspiring. I am honored to even be thought of in that company.

I appreciate all my friends who support me and encourage me. I am grateful for them. I guess it’s the “outsiders” who consider my daily life inspiring. It is not. Choosing to live with a little mobility issue is not inspiring!

We all have issues that we confront. The ones I confront may just be more visually apparent. And who knows? My challenges may be so much less than what they appear.

February Warrior Check In

Posted on February 1, 2015 by tresswann

Back for February:

How do I feel today – Still in the winter blues. I have been doing a lot of work. It’s a mixed feeling. I enjoy what I do but I am working flat out. This is my 13th straight day. I don’t think I am getting the validation I want. Is that important enough? And I watched the last episode of Parenthood and wailed. All the possibilities that life could have. Could have, would have, should have. There’s just the now. And it is finite. That milestone looms and is dragging me down.

What did you do for yourself today? Not much. I worked which in a twisted way is for me. I need to get away from that because seriously, in the past giving my all to someone else has never worked for me.

What did I eat today and how did it make me feel – Well it was mixed and I really didn’t do well. I started off with an apple streusel (non gluten muffin) I had some nuts. I made a pina colada smoothie. It tasted like a pina colada and I can’t stand pina coladas! But for dinner I had steak with my husband. I don’t like steak particularly and it’s so not on Swank. I made some great mango sorbet.

Did I exercise? What did I do? How did it feel – Well, this hasn’t been a banner week or month. I have literally been housebound and working 10 hours a day. Today I did the stepper for 45 minutes. Not enough. I have been spotty on the abs and I have not been to the gym or Zumba.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry. I have a job. I have possibilities. I have people who love and care for me. Same as last month. This month I am thinking of my husband and how he stands by me.

Do I have a higher purpose or driving force in my life? Make a mission statement – Ha, higher purpose is for childish dreams. Still thinking about a mission. Driving force in my life is to be remembered, to live after I die through love?

How long have I been treated with conventional medicine Not this month but I read about glutathione and I am thinking about it.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.

Do I blame myself for things – Yes, I am still blaming myself for not being aggressive against this.

How is stress level? It’s high. Lot of pressure on the job. Finance has eased a bit with the ridiculous hours.

What can I do tomorrow to make it better than today? Start over. It’s a new month. I still have new days.

Until next month.

Serious Stomach Stress and Sabotage

Posted on January 31, 2015 by tresswann

My first marriage was to a man, who although pleasant, had less financial sense than a 5 year old. This wasn’t just me – his own mother was relieved we were marrying so I could take care of him. I had lost my job and had started a business using my savings and unemployment. He basically made less working than I did on unemployment. His idea – play Lotto. He bought the you gotta be in it to win it ad.

Yup, I had massive credit card debt. One month, the bills came in, I literally doubled over and could not stand up. I had massive pain in my stomach. It took about two days till I could stand, do anything and of course, pay those bills. The second month it happened, I figured out the trend. It continued thereafter. Usually, I could stand but could not do much of anything else. It’s hard to read or think when you are in pain. The marriage ended. I cleared up the debt and it basically went away. However, anytime I was in a stressful situation, it came back. Mercifully, the duration was only a few hours and I have found that tea and warmth around my stomach help.

My last real bout of this was 10 years ago or so when my life started falling apart or changing. I was seeing a counselor at the time and did manage to show up for an appointment in distress. She suggested it could be irritable bowel or colitis. Before I could go to the doctor, I was laid off. As I told the man who let me go “Thank you. Summer on the beach with shells in my hair”. No more stomach problems.

Periodically, about once a year or so, I get an “attack”, usually short-lived.

I am so much more than the condition(s) that are afflicting me. Most times, I forget until I try to stand up or walk. Right now, I am involved in projects at my job that not only do I enjoy but are high profile. I do have a meeting scheduled with the top guy to present my work. I have noticed through out my working life that if things are going well or have the potential to go well, I get sick, typically a respiratory thing and/or fever. I have never taken a final in high school or college without a fever. I closed on my mother’s house and walked out of the offices with a 102 fever and had to go to bed for a few days. My body knows. So, I am working away on this presentation and putting in major time. It’s the reason I haven’t blogged. I felt prepared and rather calm. Then I had two meetings and need to do more work. Not a problem. I have been house bound due to the weather. Oh yeah, the other night, whammo! My stomach thing hit full force. I was grey, perspiring, in intense pain, the kind where every time you move and every way you move, hurts. I knew exactly where it was coming from. My body was telling me that I could not move forward and do this. I couldn’t work. I couldn’t think, I couldn’t sleep. Taking deep breaths hurt! 3 a.m. found me panting. My brain struggled through to my body and said Enough! I am approaching a milestone age which has been weighing on me. There are things I want to accomplish with my life. It’s time for me to deal with it and realize what’s left of my potential. I woke the next morning and started going for it. As I write this my stomach is twinging but I am writing and working. I am not going to let my body continue to sabotage me. And isn’t that what part of this condition is? My body literally not allowing me to move forward? When I was in counseling during that bad time, the counselor said when you get upset you let your feet out from under you. I am not saying that what’s happening with me is psychosomatic. It isn’t but I am also saying the mind/body connection is a powerful one.

And as I said when I started this unforeseen journey, I will overcome. I will rise. It will be different.

What would Reima Do?

Posted on January 9, 2015January 9, 2015 by tresswann

Reima was my mother. I am literally her pale shadow. One of the things I am deeply grateful for is that my mother passed away before she could see me like this. Two of my mother’s best friends at different times had MS and they both died. In fact, one of my earliest memories is walking with my mother and her friend and a stroller. I don’t think it was for me and there were two little brothers. I am not sure which one it might have been for. I was very, very little. Her friend had an attack and Reima had her walk with the stroller. Looking back on it, it must have been terrifying for all of them. They were young, alone with anywhere from 2 -4 little kids. She got worse and died before I was 10. We moved and there was a friend on our block. She became wheelchair bound quickly. She, too, died from this. So, when they told me that this wouldn’t kill me, I wasn’t buying any part of it.

More about Reima – she had a very high tolerance for pain. She thought childbirth was vastly overrated. She used to get her teeth drilled without anything. She maintained the same weight for just about her whole life – 7 pounds more than before she became pregnant with me. She made sure that she weighed the same every year when she went to the doctor. When she decided to quit smoking, she just stopped and yes, she didn’t gain an ounce! When she made up her mind to do something, she just did it. She came to this country essentially by herself because she wanted to.

So if my mother Reima was confronted with this and knew that it could be addressed with not having certain foods, it would have been done immediately, no question, no hesitation. And then there’s me. I want to, I need to and I am not. Well, I gave up gluten. I no longer have yogurt. Practically no eggs. Almost no red meat, never really been my thing. But no beans, no soy, no apples, no bananas (depending on who you read) no eggplant, tomato, maybe corn, no shellfish. I like fish and chicken. I like grilled things. Reima didn’t believe in deep frying. She was way in advance of her time in terms of food.

So, I need to think what would Reima do and do it.

Warrior Questions

Posted on January 3, 2015 by tresswann

Even though I am not a Wahl’s warrior, I think her questionnaire is a good way to start the year so here goes:

How do I feel today – Well, I have the usual New Year’s blues. I am always fearful of the New Year. I know what I had. I survived it. I am still literally standing today. I don’t know what the New Year will bring, the vast uncharted territory. We saw Life of Pi this past week and it’s sort of how I feel. I am embarking on a journey without a map with something that wants to destroy me. I should have the power and the tools to tame it. Can I? As to the physical, I tried some basic lift your leg exercises and my left which is supposed to be the good one, is for crap. I feel slightly determined and slightly overwhelmed today.

What did you do for yourself today? I finished reading a trashy novel with breakfast which felt great and here I am writing which has always worked for me. And I am going to finish listening to Serial

What did I eat today and how did it make me feel – Day isn’t over but I started positively with homemade granola and a cranberry smoothie.

Did I exercise? What did I do? How did it feel – Exercise, see above and I hope to get back to my abs.

For whom or what are you grateful? What matters most in life? Grateful as usual to be warm safe and dry. I have a job. I have possibilities. I have people who love and care for me.

Do I have a higher purpose or driving force in my life? Make a mission statement – Ha, higher purpose is for childish dreams. Driving force – pay my bills and continue to walk. Mission statement -beyond me at this point. Something about sharing my journey. It’s self serving

How long have I been treated with conventional medicine Well, they haven’t really treated me now, have they? I have the spectral leg aka the brace. I was going to physical therapy. I did acupuncture for two years.

The first time I had a symptom – June 2004 walking on the beach boardwalk

What symptoms are most troublesome – Duh, gradually losing my ability to walk and being dependent.

Do I blame myself for things – Sure, being stupidly cheap and not getting the hole in my mouth fixed. I think a virus amok kickstarted this. Not searching hard enough or asking the right questions. Not being aggressive enough.

How is stress level? Not as bad as it’s been. Financially, things are frightening! It’s on me. I don’t want to keep on getting up at 4 something. It’s not healthy for me on all kinds of levels and I can’t see my way out. Time challenges. And then all that walking in public areas that I struggle with

What can I do tomorrow to make it better than today? Well, eat properly, exercise and breathe. Make a plan.

I will do this questionnaire at the beginning of the month. And let’s be real, on the weekend.

Tresswann Shall Rise Again – Living Life!

Confronting and Overcoming Autoimmune Disease on my terms Healing, Musing,

mobility