Define, Confine, Shopping and the Web

Posted on September 12, 2018 by tresswann

My father’s two sisters, my aunts, were obese; one morbidly so. The elder had diabetes early on and lost her toes. Aunt E had lost lots of weight but being a member of my father’s family did not believe in exercise, light or fresh air. She had all this loose flesh under her arms. As a child, I loved to scrunch it up and play with it. She died when I was a freshman in college. Aunt L, the younger, was morbidly obese. She was 4’9 or 4’10” and over 300 pounds. When I was little, she always told me that next year I would be able to sit in her lap. That never happened. She was straight from top to bottom. Indeed, she became larger. As I became older and she became larger, she no longer wanted to see me. I was thin and healthy until college. My parents never let me think I was as they were terrified I would take after the aunts. I kept on assuring them that I loved clothing too much for that to happen. I also liked boys and people. I had seen what it had done to the aunts. Yes, from time to time, I have used weight as a shield but only a temporary one. I like being part of the larger world too much. I worked in fashion and finance. This is not to say that overweight people do not work or succeed in these industries but I was and am consumed with my appearance. I also am my very own person and early on had determined that I was not going to live anyone else’s life but my own.

After Aunt E died, Aunt L did lose some weight. However, following the paternal family inclination, she never ever exercised. The loss coupled with her height resulted in a medically necessary operation which removed 75 pounds of excess flesh. After being smug for years that she didn’t have diabetes, it hit with a vengeance. Her eyesight went. Aunt L had lots and lots of issues. This is also around the nascence of the Internet, the change in fax machines and increasing frequency of phone orders. Aunt L found it possible to stay inside most of the time and order most of what she wanted and needed for home delivery. My mother often said that with the increasing ubiquity of the internet, Aunt L would never have had to leave the house. My mother didn’t live to see Amazon.

I was told when this journey started that diabetes was an autoimmune condition. Hmmm. I was quite determined when this journey started that I would not be confined or defined by this condition. I was adamant. Well, easier said than done. The almost 10 years since this has begun to afflict me has seen significant changes. I obtained the “spectral leg”. Initially, I only wore it to and from work. I worked in NYC and commuted through Penn, Times Square and Grand Central Stations daily. I used to wear it on the outside so it would be a visual clue to people that I might be slower or a bit stumbly. I still mourn my black leather pants – spectral didn’t work with them. I still wore heels at work, just not the 3.5 – 4 inchers that I liked. Then I started to have to wear spectral all the time. New shoes were called for. I wore “crazy” sneakers, lacy oxfords and mary janes. It was not me but afforded a modicum of style.

I started to use a cane. Again, as with the spectral leg, initially it was a visual clue. A fellow commuter used to tease me that he was waiting to see me whack someone with it. And again, per define and confine, my canes are seasonal – summer is a pink floral, fall a rich paisley, winter and evening shimmery silver grey.

I started to find it harder and harder to do things other than work. I hated the perceived pity people had for me. On the flipside, I hated, hated, hate being inspirational. I am me and this is it. I was let go from my job. The world started to become narrower as I wasn’t up and out every day. I became dependent on the cane, rejected the latest incarnation of the spectral leg currently known as Frankie for Frankenstein.

Then the walker which I haven’t decided will be known as either the gladiator or the chariot became how I need to perambulate outside. I am considering Washi tape. And the world shrinks yet again. Grocery shopping fills me with dread. The combination of a heavy cart and a poorly graded parking lot sees me relinquishing my list to my husband and sitting in the car. Recently, at BJs, the greeter has been offering me the motorized cart. I decline it as Tom and I have visions of my knocking down piles of groceries and children as I speed along ( I do like speed), forgetting or unable to brake. Lately, I am having enormous difficulty getting back into my home via its two little front steps. It involves swinging my left leg to build momentum and then using the railing to haul myself up. That’s on a good day. On a bad day, it’s Tom arranging my legs which stiffen and hauling me up. Not pretty.

One thing that I have had is the ability and knowledge to sooth myself. I read. Reading has always been my drug of choice. For several years now, I order books and Tom runs in, picks up and drops off at the library. Did you know there is a version of HIPAA for books? I had to sign a form so that he can get my books. I craft and calm down. However, I haven’t been to Michaels Crafts for months. I received an offer last week for 40% off online delivery and in-store pickup. And yes, I could designate him to pick up. He picked up at the library and then picked up at Michaels. Easy. Too easy! I flashed back to Aunt L. What happened to not confine and not define? I have goofed, big time. I don’t want to hear about you are doing the best you can or you are doing so much better than other people. Not a viable option. Yes, it limits me. It can confine me if I succumb. Other people can decide to define me but that’s on them. As I made up my mind when I was small, I need to live my own life. I have to remember this and confront and overcome.

Failure and Rising Again

Posted on May 8, 2018May 8, 2018 by tresswann

I did not make it to the Black/White Masquerade party.

I did attend my tea. I was relatively sedentary. My friend did help me walk around the room. With her help, I successfully bid on a Luau basket. I guess there’s a party in my future.

The problem started because the car was parked much further than usual. It took me about 15 minutes, easily, well not so easily, to get to the car. I arrived home later than planned. I was totally knackered but put my feet up. I began to modify my plans – touch up makeup instead of redo; leave hair as is and not swap to hair ornament, leave Victorian knee highs on. I did contemplate staying with the floral sneakers but really wouldn’t work with black chiffon skirt.

Next, I had a problem pulling the skirt on. As much as I dislike it, it has an elastic waist. Comic but not, seeing Tom trying to pull it on for me. Then I tried to stand up and gracefully collapsed into the chair. Then I did it again. It was scary. I realized that the mask was still upstairs; the cards weren’t signed. It was overwhelming. I just couldn’t do it. I hurt. I was weak. I would not be able to get there until much later.

I have always believed in a cost benefit analysis. If I had to go to work in seriously bad weather or snow, I always did this. Sometimes, I went; sometimes I didn’t. Well, CBA on Saturday, said it wouldn’t work. Being so collapsed, I would not be safe driving. I would barely have been able to walk. I was devastated but cancelled at the last minute. This is so not me. It was always a joke when I was much younger that I was always up for a party. For awhile, my nickname was Flash because I was always ready in a flash. Nor did I let sickness deter me. I recall a dinner dance cruise around Manhattan in the 80’s with a 102 fever body suit with wrap skirt, shawl and glitter. Everything glittered for me that evening.

I was bitterly disappointed this past Saturday. Firstly, if I had been able to go I would have needed the walker. Secondly, that I wasn’t strong enough at all to go. So, as per my usual Joe Palooka doll self (you know the children’s punching bag toys that you hit and they bounce right back), I decided that iit’s time yet again to amp things up. I have started the MS workout program. If I stick to it, I should get results. I am going to push more on a daily basis for more steps. I will get outdoors this summer. I refuse to bow to defeat. My plan and goal is for this to be the last event I lose to this condition

Yet Another’s Doctor Visit – Digress and Progress

Posted on October 6, 2017October 6, 2017 by tresswann

Every time I decide I am going to break up with my doctor, I fall in love with her all over again.

I went into NYC Friday morning for a belated visit. Originally, she wanted to see me in June before my infusion therapy. It didn’t happen. Then came summer with the anticipated railroad problems leading us to September. I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session. Glorious cool weather Friday. I wore my macrame type sandals. It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs. I was walking for crap. We got into Penn shortly after 7:30 a.m. so it wasn’t horrifically busy. I was frightened. If I hadn’t been holding onto Tom, I would have been knocked over or fallen. He had my back for the escalators which have become another ring of Hell for me. It’s one thing getting on. It’s a whole other thing getting off. Then we had to cross 7th Avenue. Yes, I was already shot before I reached the bus. I started to become agitated and weepy as it was clear to me that NYC is gone for me. This is where I worked. This is where I can make real money and do something that I like. And it’s more than that. It’s the stimulation of the city – the clothes, the food, the lights, the culture. It’s closed to me. I can no longer do this. I struggle onto the bus. Tom has to lift my left leg to get me on The bus driver is awesome. She asks where I am getting off so she can make sure she pulls all the way in. I take a disabled seat. Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out? Just breathe! Then in the 60’s a man with a scooter prepares to get on. My bus driver ejects the delivery fellow and the older lady across from me. “You stay” I am amazed when someone tries to push past him as he is leaving.

I am the first appointment at the doctor’s which is good. She calls out to me as she is coming in with her coffee. She spends nearly an hour with me. Sometimes, I am techy and sometimes I am so not. I recently figured out how to make Notes on the phone. So, I’ve been collecting all my concerns in a format that is accessible and legible.

First off, we admire my sandals as I tell her that I need a new spectral leg. She is referring me to a rehabilitation specialist. He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk. This is good.

Bad, she thinks I should use the walker. The one that has been sitting behind the door, bought with an Amazon freebie.

She tells me how I am always so well put together and how important it is for my health. I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome. My therapist also says I am always put together and it’s good for my health. I miss getting dressed for work. I open my closet and mourn.

I have low blood pressure. My late former in laws used to marvel how low it was without medication. Due to Tom’s recent cardiac adventures and his obsessive nature, blood pressure is taken all the time. We even checked his machine against his surgeon’s and it’s fairly accurate. Mine is way, way low. Doctor says, “Are you dizzy or faint” No, that is my old stress reaction. I turn grey and my eyeballs roll up in my head. Doctor says, “What we say about people like you around here is that you are going to live forever. You are good.”

We talked about my drugs. Yes, she wants me to stay with the alpha-lipoic and the Biotin. Okay, as I have said before I have issues around my nails. They were bitten and ripped to the quick for years. A few years ago I decided enough and grew them. They have been long and hard since then. Last October I had to go to the salon to have them cut. This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard. Doctor’s question – what are you eating? Ah, here we go – not enough protein. This has always been challenging for me. I am so not a meat eater.

Now, I find this talk of food extremely interesting. When this journey started, I asked her boss about food and he pooh-poohed me. I took myself and my money to a nutritionist and she gave me what I thought was an insane diet and other doctors subsequently agreed. If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up. As things progressed, I discovered a bunch of different ways to eat that can address this. Two years ago, I stopped gluten for months and noticed the difference. Alas, I’ve fallen off the wagon. Recently, I saw that the institution that treats me has done food studies. In case you haven’t guessed it does make a difference.

My husband used to work at nights. He’d wake around 11 and I’d go to bed around 9. The last night he worked, I got up to go to the bathroom shortly before 11. I remember feeling very hot and not so well. The next thing was Tom shaking awake from a really great sleep. He awoke to find my body in the hall. We have a very tiny house. There was blood on my head. We never knew if I passed out and hit my head on the way down or hit my head and passed out. Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly. And the answer is still MENOPAUSE! She suggests also that I drink more water.

Now all this caused me to start thinking about my period, menopause and my affliction. People always laugh because I know the exact date it started. Easy, because it was Halloween. So, 40 years later in October I decided enough is enough. I willed myself for it to stop. Wait a minute. That’s when I became symptomatic. Something to ponder and research. Not sure where it will all lead.

We are now at the 25 feet walk. First time, when it started, I did this in heels. I tell her I walk like a toddler. She tells me I walk like me. So, not a good thought. This is the first time I have ever done it with a cane. I am terrible and slow. I miss walking I miss the speed, the breeze, the joy. Walking was how I figured things out. It seems like everything is being taken away.

Now, to the inspirational part, and I hate the inspiration part, attitude counts. I told the doctor about the woman I had met who was diagnosed this year and appears to have given up. She is anticipating the worse – making arrangements for ramps, etc. Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue. I used to be relatively tired all the time, waking for work in the 4 a.m. hour. This is different. It feels like dying, I guess. It is the most peculiar sensation. “Have you ever considered a nap?” I am my mother’s daughter. Maybe, just maybe if you have a high fever. Though I have memories before this marriage of drifting off during a Saturday afternoon radio program. She agrees that our mothers were the same and insists I need to nap. Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down. And my life is short and limited enough as it is. I will not waste what’s left of it napping. The other woman doesn’t nap. She stays in bed all day! My doctor admits that attitude is important. She starts to tell me about a patient group. I cut her off. I am so not interested in people who LOVE their scooters! Nope, this is cool. These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug. They get a paid night out to hang with their friends. This is a good idea.

I leave with recommendations for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones. I always picture them as saying d’uh?) I also leave more determined than ever to beat the odds. Why not?

Firsts and Hopefully Lasts

Posted on April 9, 2017April 9, 2017 by tresswann

I participate in research studies. It’s a way of making some good come out of something less than positive. And it’s also the way I can get MRI’s. When I originally had insurance and this started. My first MRIs cost me thousands. Then I had Affordable care and it was reasonable. I am back to corporate insurance and a too high copay.

This study also focuses on the neurologic. Usually, I do those, the blood and the physical first and the 90 minutes or so of MRIs last. This time it was reversed. We needed to be at MRIs first at 9a.m.

I am spoiled. Since I have started working on LI, waking at 4:15 a.m. no longer appeals to me.

I was better able to get to the bus uptown this time. However, I realize that I am no longer able to work in NYC. This is extremely disheartening. We took a slightly later train and ran a little late. It’s two blocks from the main office to the MRI. Unless you have issues walking, you don’t realize that the sidewalk is slightly slanted and is not completely flush. Also, my legs don’t work when I am upset.

I said to Tom “I think I am going to need a wheelchair to make it to the MRI.” Now, they always offer and I always refuse. Once, years ago, I told him I needed a chair and he told me if he had to carry me, it wasn’t happening. He said, I was going to tell you that we need one but thought you would be mad.” Oh well. When we arrived, the research assistant said, “let’s get you a wheelchair.” I nearly burst into tears. Ironically, there’s an underground passage. I could have walked it but we definitely would have been late. And it’s longer.

Now here’s the funny thing, I fall asleep during MRIs. Yup. No problems. See, no one can get me there. No one can call me or email me. They tuck me in with a nice blanket. Could a girl want more? I was signed up for a special one. This time, they made me wear two gowns. LUCKY! So, now is the fun part. I don’t have spectral leg, cane or glasses. They have to carry me onto the machine. I get my nap. They pull me out. I am used to this drill. They usually reposition me and roll me back in. Not this time. We do the carry thing into another room and machine. Ah, that explains the double gown! I settle in to a new machine. They pull me out again. The machine is broken!

Back to the wheelchair. And onto the neurological tests. Well, first I do the physical . My now usual stumble. The thing with the neurological tests is they are usually the same. They read a list of objects and I tell them the list back. I am really good at this. I remember from year to year. LOL. This year they changed the list. Hey, I aced it, no mistakes. There are other tests which I also remember. One I particularly dislike is 6 shapes that you need to sort into 2 groups of 3. I miss some usually. This time I did more combinations than ever. My mind is not declining. Researcher said she won’t tell me what I missed ’cause I’ll remember next year.

Being in a wheelchair was weird. I felt diminished. I was lower than everyone. People moved out of our way. Moving without doing anything was unsettling. On one hand, it was stress-free; on the other it was awful to think that I had come to that.

This cannot continue. I cannot give up. I don’t know what to do.

Disabilities, Limitations or Issues

Posted on October 20, 2016 by tresswann

I am having problems with the whole disability concept. I know I really can’t walk well anymore. Actually, I usually forget until I try to stand or move. I told my doctor a few weeks ago that I think and feel I am me until I try and stand. Her response was that I am me. No, this is so not me.

I have been out of work for a year. People have been saying to me for much longer than that, that I should go on disability. Why? I am not disabled. I just do not walk well or fast. But especially now when it is clear that I have lost out on jobs because of my mobility issues, the disability question is raising its ugly little head again.

In the past when I didn’t have what I call a job-job, I temped or worked retail. Those avenues are closed to me now primarily due to the mobility issues. So, I can’t supplement my lack of income. It’s getting serious as I am living off my life savings which were not much to begin with. Most of the time, mobility should not be a factor in what I do. I am a technical trainer by trade. I show people how to use technology to do their jobs. In addition to the mobility, I am a woman of a certain age (double whammy); I was at my last position for 15 years; and I have now been without gainful employment for a year.

Now, I am not going down without a fight. I have either been blessed or cursed with grit and resilience. I consulted a career counselor and her advice was to network in my professional associations. I might be able to find out what other factors might be impeding me from working and of course, I might be able to network myself into a job.

My doctor told me to apply for the disability. This will not pay my mortgage let alone anything else.

So, I am fighting back.

Did you know that October is Employer Disability Awareness Month? Who knew! Through the HR society which I recently joined, there was a session this week on Disability Etiquette. My plan? Hike my disabled self with seasonally coordinated cane there and interact. What a perfect opportunity! Wrong! The attendees definitely did not want to deal.

However, the presentation was very thorough and informative. He raised the issue that we are people, not disabilities. In fact, the presenter stressed that we are people that have some limitations or issues. I love, love this way of identification. It makes so much sense. I do usually refer to myself as someone with mobility issues. I have always maintained I was trendy and ahead of the curve.

I did have a conversation with someone in the elevator on the way out. She disclosed she had RA. She loved my positive attitude. Being negative takes too much time and energy.

And yes, I came up with another Plan B based on this meeting.

And with that group of people, who had the limitations and/or issues? Me? Or them?

Doctors, Drugs, Disability

Posted on October 9, 2016October 9, 2016 by tresswann

Back at the doctor’s Friday. I was hoping for her to be able to get

Ocrelizumab. It’s not yet available. There is a similar drug but it is not approved for my disease:

Rituximab.

It’s a 5 hour infusion and then in two weeks, another one. Every 6 months. So, here’s the thing, side effects. I could get shortness of breath and they slow the drug. I could get more colds and infections. Long term use might lead to cancer. And of course, death though rare. I HATE needles let alone I.V.s. However, I think I am going to suck it up and try. I looked it up and it’s chemotherapy. Kinda scary. Also, it’s been around for years. The problem is insurance may not pay as it’s off label so I may have to wait till next year for the Opera. Has anyone used this? What do you think?

The other thing is Biotin. I had obtained it just before I was let go and at $148 a month. It wasn’t happening. There is a new source and it will cost $60 a month. It’s worth a try – $2 a day. Apparently, this looks good. Anyone use it?

Now there’s other things going on. I have had a hard week. I got rejected again for a job. It’s one for which I should have been a contender. It was exactly what I used to do. I had to create two presentations for it. I was notified late on Friday for Monday. It was my birthday and New Year’s dinner, too. I put in hours and it was good. No go. It was across the street from where I was and it was difficult for me to walk there.

So, at this point, it appears that I am no longer going to be able to work in corporate America again. I have hit the trifecta – woman, older, disabled. This is so wrong. I can’t even begin to address this.

The doctor is also in NYC. I couldn’t do it without my husband.

I have collapsed recently in the bedroom without hurting myself but scary. My balance has also been wobbly. The doctor says that’s due to my weakness, not the drug I take. My fingers are weaker, My walking has gotten worse. My theory? Not going out to work every day has taken its toll despite the gym. And she agrees, stress of not having work is negatively impacting me. She’s finally admitting stress can be a factor. I deal with extraordinary stress. I have just started counseling. In terms of stress and we are only up to 2004, she thinks it’s a lot.

I asked my neurologist about going out on disability. I expected her to pooh pooh it. NOT! She said who deserved it more? I have worked for decades. I don’t want to do this. I am going to have to think about this.

On the upside, my brain is fine. She says that will be fine and she’s never seen it change. See, when I am sitting down I feel like me. She tells me this is me. I think NOT!!

I need to reflect and move forward.

Out of Work Summers – Beach and Bleach

Posted on July 19, 2016July 19, 2016 by tresswann

I am writing this from my laptop in the backyard. I am sitting in what we call our screen house so I am protected from the sun. There is a delightful breeze. I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach. Due to this condition that has been closed to me for now. I can no longer tolerate the heat nor can I walk on the beach. I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment career in the garment district. I went in and out. Then I ended up at a major company and wa there for almost 9 years. I loved what I did and was excellent at it. The 90’s happened as did a merger. I was treated in a textbook/case study manner. I stopped getting invited to meetings. My work was taken away from me. I was let go with severance. It was the end of May. All my associates were let go after me. I was grateful for this as it angered me and I would have been fired. They let go a woman who had been there for almost 20 years. She was paid less than what I used to expense for lunch and dinners weekly. Ah, that expense account. For nearly 10 more years, I didn’t make as much as my expense account. I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted. I headed to the beach and spent so much time there my naturally dark hair bleached. I also decided that I was going into business for myself. I wanted a company that would never treat people like my low paid friend that way. I have a great sense of what is going to be popular fashion-wise and I had made connections literally all over the world. I reached out to my network and received enormous support. What can I say? Great idea. Wrong time. Poor capitalization. I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married. Bad, bad choice. It was not convenient. I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm. I was over a thousand hours and forced to take nine weeks unpaid leave. It was summer. I hit the beach and the want ads. Again, I bleached out. I had an interview with a company that wanted someone who could do what had been done for my fashion employer. Uh, that was me. I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process. I arrived at the interview deeply tanned from my beach time. The interviewer took one look at me and said “Obviously, you are not seriously interested in working.” He wouldn’t even look at the hours of work I had put in.

Fast forward, that company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks. After 4 years, I was let go. Back to the beach and back to bleaching out again. And I married, again! But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had. I also started moonlighting at the Bank. What could go wrong? Chapter 11 at the end of May. For the 2nd time in two years, I was off for the summer. Yup, beach and bleach.

Except for the first time at the end, I was optimistic. I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years. I didn’t have the same hurt I had had with fashion. My associations were different. I was optimistic and calm. I didn’t want to do my own business as I had done previously but actively look for work.

What’s different? The Internet and my scads of experience. Even if I was able, no beach and bleach for me. I spend hours daily sometimes including the weekends looking for a job. Today is one of the only days I am taking a “break” and writing. What’s also different this time is that I am getting really good interviews. What’s the problem? Well, I am mature. Experience costs money. “We want you do but with someone out of college.” Good luck to ya on that. Didn’t you hear “You get what you pay for.” And then, the elephant in the room. My mobility. There is nothing wrong with my brain. I participate in research studies and I can remember the answers I missed the previous year!

It’s summer. I HATE this condition. It is taking so much away from me: no beach and bleach, no walking, no gardening, no JOB!! I need to channel that sense of optimism and possibility again. I need to recharge without the beach.

June/July 2016 Check In

Posted on July 3, 2016July 3, 2016 by tresswann

goofed. I started this in the first few days of June and then stopped. I have been blue, angry and pre-occupied. It should be easier not working to be timely and thorough but somehow it’s not. I am looking for the spark and the peace that seem to have disappeared.

Wow, I was checking my records and saw that last year I was interviewing and bombing out. too!

How did I feel this past Month?

Still blue. There was no activity at all job wise. This is depressing . I also feel my health deteriorating. I am not sure if this is a symptom. The WEDDING looms. My stepson is getting married and it’s just going to be ugly on all kinds of levels. And I continued to be blue through June also although jobs picked up. I interviewed at three companies in two days and came up empty. I was reminded I have a major reunion coming up next year. I want to be able to walk and don’t see that happening. My friends are retiring and/or having grandchildren so I am fighting regrets.

What did you do for yourself this month?

In May, I did attend a professional association event. I was surprised that I liked it. Goes to show that sometimes you have to let go of assumptions. I also realized that I had let part of my life go. I have been isolated. I did sign up for two events back to back in June and then didn’t go. The first one was for a cocktail party at a professional association. It was at a golf club. The last time I was there was over 20 years ago in a blizzard. The late Joebe had a DUI conviction and was finishing community service there. It’s beautiful, wooded and slightly hilly. It was not fun driving his Camarro. At the last moment last month, T decided to come with me and sit in the car as he thought due to said hilliness, I might need assistance getting in. It was a beautiful evening with bad directions. When we finally found the clubhouse there was only valet parking or far parking. I would have been shot by the time I walked in so we left. The next night was another professional event but I wimped out as it was rush hour and the Long Island Expressway. I grew up with parents who had a terror of the expressway. I have been working through it but not at my strongest.

Trying to get back in touch with my creativity but feel too cluttered.

What did I eat this month and how did it make me feel –

Still doing my Smoothies. Cheating a bit on good eating but getting back into it. When I eat well, I feel well. When I am blue it just falls apart.

Did I exercise? What did I do? How did it feel –

The gym has become my new happy place. However due to blistering in my two day three company interview marathon, I am hurt and can’t wear shoes. I lost the gym for over 10 days. I went two days and reinjured my foot. I am weaker. It’s a vicious cycle.

For whom or what are you grateful? What matters most in life?

I am grateful that I am still hobbling along. I am grateful that despite not working the mortgage is paid and we can eat. My stepsons came through for me in an awesome way with the blisters. I am told and shown, I am loved.

Do I have a higher purpose or driving force in my life? Make a mission statement –

No mission statement as usual. I’ll co opt what I tell my little “elves”- spread joy, do good.

Conventional medicine Still just Ampyra and Baclufen. I am looking forward to Opera in the fall. I have just been told about Colostrum and am thinking about giving it a whirl.

Symptoms – Ah, the Raynaoud’s. The doctor was quackery so I am just coping on my own. Getting weaker in my hands. My balance may be getting minimally better.

What symptoms are most troublesome – Independence and mobility. Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level? Very bad. I think I have reached my limit. Not working is impacting me on all levels. I have an enormous amount of anger which I don’t like.

What can I do tomorrow to make it better than today?

Think I am going to get a “tune up” with a therapist. Amp up the physical therapy, exercise and right eating.

The Rheumatologist

Posted on May 13, 2016May 13, 2016 by tresswann

Since this journey started almost 8 years ago, I have been looking for a good rheumatologist. Actually, I did have one. She was originally my mother’s. It upset me that I had started down this path. This was in the early days when I was still looking for a diagnosis. She tested me for everything. I tested positive for everything. Well, Sjogren’s, Lupus, rheumatoid arthritis for starters. I cried. She hugged. She told me I was asymptomatic. Also, it wasn’t unusual. She said that one disease could open the door for others. Not to worry, I wasn’t considered progressive. Three visits in, she retired and moved to North Carolina.

Move forward almost a year. I really thought I needed a rheumatologist. I am known for my smile. Inside my lips started to hurt. I could no longer smile. Lipstick hurt. I am also a makeup kinda woman. My neurologist told me not to take hot baths, my favorite form of relaxation. My ability to walk was fading. I felt everything I loved was disappearing and being diminished for me. At this time my mother also seemed to be deteriorating.

I went to the “replacement” rheumatologist. First, he looked like he was 12. Being a Hopkins (non-premed) graduate, I understand the importance of newly minted doctors. I also understand that after a certain age everyone looks 12. But… he walked in with a laptop and I kid you not, surfed the Net with my symptoms. He gave me 5 possibilities – lupus, menopause, herpes, stress and something I forget. Left in a hurry. The symptoms had been easing anyhow. A couple of days later I found out my mother was dying – flare-up! It was stress.

Next, I contacted a roomie from college. I said I went to Hopkins. I went to school with a sh*load of doctors. I see her every five years or so at homecoming. She became head of rheumatology at a teaching hospital in NC. I call her office and leave a message that I’d just like a referral, just a referral. Still waiting…

Even my neurologist has said for the last few years I need a rheumatologist. I have a friend who is also host to myriad autoimmune eruptions, disruptions and events. In December, she looked at my right hand which unbeknownst to me was purple and beyond cold. She warmed it up and announced you have Raynaud’s.

I am taking my usual happy hot bath one night in winter. My extremities are always cold and always have been. I wear socks to bed most of the year. Over the past few years my feet have been getting worse but they warm right up in the bath. So, I get into the bath and notice my hands are freezing and they are not white, red or purple but sort of dead looking, an awful non-color. I plunge them in the bath and swirl around and nothing. They do not change! It must have been 5 minutes or more before color came back and they stopped hurting.

Fingers started changing color more frequently, especially my middle left hand finger. Then at the end of March I stood up at the table with Tom right next to me and did a bizarre collapse and fall. I really hurt my left pinky. Tom made me a splint with a meat skewer. I went in for research study and MRIs. The doctors were much taken with his work. My middle and ring finger started to go dead several times a day! By the time I went to my neurologist, Tom had perfected the splint with a smartphone stylus replacing the skewer. She says next time I fall like that I need to go to urgent care and uh, you have Raynaud’s.

This brings us to today. I asked my autoimmune friend for her rheumatologist who also practices alternate medicine. He is not covered under my health insurance. No surprise on that one. But I believe there are certain things you don’t skimp on. Last year, my neurologist wasn’t covered under my insurance. This year, she is free! This guy is several hundred dollars. He sends me a thorough and complex questionnaire on line. I literally complete 28 pages of questions! I appreciate this as my handwriting has always been awful and lately my hands don’t work well all the time. We get there today and I have to fill out another sheaf of papers. They explain their systems don’t always cooperate. No waiting and the nurse walks me back. She weighs me and says “You’re tiny!” High point of the visit. The last time anyone said that was my other college roommate after not seeing me for 30 years.

I have on the spectral leg and my cane aka walking stick. Doctor walks in with laptop. Tom flashes back but then sees he is using it to pull up records and take notes. He asks questions and asks about blood work. I don’t have any recent. I say I am here because my neurologist and friend say I have Raynaud’s. He squeezes my hand and says my self-diagnosis is correct. He doesn’t look at my feet. Nothing. I need blood work to see if anything else may be going on. I tell him that one of the reasons I chose him was that I understood he also practiced alternate medicine. He does and goes into an explanation of auricular medicine. Tom practically starts to levitate. We grew up differently. I have to be near death to take an Advil. He is one of 5 children and any drug is a good drug. Herbs are not doing it for him. Doctor says ‘Oh, you don’t like going to doctors?” That is not my issue. I go to the neurologist, gynecologist and eye doctor regularly. I explain about Hopkins and how I saw them in their formative years so, I can be wary. I get the scrip for the bloods, say goodbye and then doctor asks why I am using a cane? Cripes, I had to be helped onto the scale. We had discussed the MS diagnosis earlier in my 10 -15 minute visit.

Back to the drawing board, I need a rheumatologist.

May 2016 Check In

Posted on May 6, 2016May 6, 2016 by tresswann

How did I feel this past Month?

On the blue side, with ups and downs. The job thing is destroying me. I get interest and interviews and then I crash. April marked 6 months out of work. It is now going to get even harder. Yes, I am a mature woman with a gimp, a very stylish walking stick and not cheap. On the upside, I connected with Meg’s blog http://www.bbhwithms.com/

Her blog is a must read and has given me so much hope. It’s great to know there’s someone else out there.

I am reflecting on how I got onto the wrong track or the track I didn’t want to end up on in my life. I walked away and now I can’t walk. Something to ponder. So, how much of my job situation is attributable to me. Some, I think. I became just a tad complacent. I am looking back in order to move forward. I feel time catching up with me. It’s finite.

What did you do for yourself this month?

Still playing arts and crafts. I did take a finger knitting class. The only other attendee was a great grandmother who bent over and accidentally mooned the whole store. I am reading more which gives me joy and peace.

I also have started playing with more smoothies and a reset detox.

What did I eat this month and how did it make me feel –

Well, a definite emphasis on smoothies. I expanded my repertoire. I also did a Simple Green Smoothies Thrive reset hoping to get me back on track. I definitely deflated. I couldn’t eat all the food as I was too full. I paid no attention to the different autoimmune diets but it covered the bases – no sugar, no gluten, no caffeine, no dairy, no meat. I could definitely eat this way.

Did I exercise? What did I do? How did it feel –

No Zumba but more gym time. And I have the new Fitbit Alta which is helping me with my steps.

For whom or what are you grateful? What matters most in life?

I am so grateful for my friends who keep my head above water. Every night I list gratitude for at least these five things: friends, mobility, possibilities, wherewithal, creativity

Do I have a higher purpose or driving force in my life? Make a mission statement –

Getting closer to that mission statement, My grandma told me (it was Shakespeare but who knew?) To thine ownself be true. Tis like the night, cannot be changed. That works for me

Conventional medicine Still just Ampyra and Baclufen. And my doctor says there is a drug that will be available in the fall that will work for me.

Symptoms – Hands are still getting weaker. My hands and feet are multi-colored. I have an appointment next week. My neurologist looked at my hands and said Raynaud’s.