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

Heidi, the Super Bowl, Secret Garden, Pollyanna and Me

Posted on February 9, 2018February 9, 2018 by tresswann

The SuperBowl has been on my mind as it has recently passed. My family weren’t football fans but totally baseball mad. Tom watched it in full for the first time in decades. Anyway, my mind was just drifting along and I remembered “Heidi loves the Super Bowl”. Yes, you have to be of a certain age to remember and appreciate that bumper/sticker joke. I was one of the children breathlessly awaiting the broadcast of Heidi. I don’t recall the exact details as I was a child and football not a religion practiced in my home, but it was at some critical juncture in the game, that the network cut over to Heidi. It must have been around 7 o’clock and of course, on a Sunday evening I was one of those children who adored Heidi. It was one of my favorite childhood books. I would not have been allowed to stay up late on a school night.

Heidi

Heidi’s story, as filtered through memory – Heidi is a miserable child and sent to live with her grumpy, mean Grandfather in the Alps. He forces her to go outside, play, herd goats and get apples in her cheeks. Somehow, she encounters Klara, a young sick girl, who reading between the lines, is not expected to last long. Klara can’t walk either. Heidi enlists Grandfather to do for Klara what he has done for her. She drinks goat milk from the herd. And with exercise, good air and clean food, Klara is cured and can walk. More or less. It’s been decades. I shall have to gimp upstairs to my childhood shelf and have a read.

secret garden

One of my other favorite books as a child and yes, just a plain favorite is The Secret Garden. Again, the condensed via me version: Mary is a miserable, spoiled brat baby and sickly. She is sent to live with her uncle in England. Again good air, good food and a new friend lead to a change in her. She discovers her cousin Colin hidden away – bedridden, can’t walk, not expected to live. Good air and food plus exercise and he walks again.

My parents used to tease and call me Pollyanna or Rebecca of Sunnybrook Farm. No recollection of Rebecca but a memory of the film Pollyanna with Hayley Mills. I did want to be Hayley Mills. My recollection is that Pollyanna is a positive child, gets ill, loses her ability to walk; in this case she doesn’t get to walk again but everyone loves her more. No memory of Rebecca except that she was cheery.

So, where is this leading? I have been steadily deteriorating over the last few months. I have attributed this to bad eating and lack of activity. The last week has been particularly brutal. My doctors have pooh-poohed me. It’s the nature of the disease. It’s supposed to progress and it is. There is no cure at this time and it is inevitable. From day one, I have never bought into that. I do believe that food and notjust “eat healthy” impacts walking. Not walking and being as active as I used to be takes its toll. It’s a vicious cycle – less activity, more fatigue, more stress, less activity…. Eating needs to be tweaked and healthy is relative. I am still sorting it out, But do not, do not tell a woman who has metabolized Heidi and The Secret Garden into her DNA that she will not walk again and wheelchairs and scooters are inevitable. Obviously, you have not read what I did as a child.

Here’s to Colin, Klara and me, perpetually Pollyanna and proud of it.

Crashing

Posted on October 7, 2017 by tresswann

Well, the doctor did tell me to use the walker, at least till I meet with the rehab specialist. I rang this week and he doesn’t accept my insurance, However, he will see me at a clinic. Tom doesn’t like that but we are just going to have to suck it up and go.

I have been unable to go to the gym this week as Tom is on another binge. Aside from the fact that the gym and liquor store are in the same center, he’s been too drunk to really go out in public. It is what it is. So, as an alternate measure and part of my plan anyway, I have been doing the stair stepper as much as possible. The most I’ve reached is 6600 steps, not enough.

So, what I did on Thursday, was lock the room door. It is the only room in the house with a door. This allowed me to do some thinking, writing, reading and even watch programs that I like while I did the stepper. I did get a bit wobbly. Tom spent most of the day passed out. After 5, I unlocked the door. Dunno why. Just did. And years ago, he did destroy the door so it’s not like it means anything except symbolically.

The last few weeks I have felt myself deteriorating. Ever optimistic, I have tried to attribute it to the intense stress that I have been under as well as the lack of activity. In order for me to take control, I took the walker out from behind the door yesterday. I need to practice with it before I use it outside and frankly, I needed the extra support. I almost never use the spectral leg or cane in the house but I guess life is beginning to change. I struggled not to weep. How did this ever come to pass? How can I consider this a viable option?

It happens sometime after you become an adult. You walk down the street and see a reflection in a window. Who is that adult that resembles you if you were grown up? Wait a minute! It’s you and you are grown up. The next step is inevitable. You catch sight of yourself and…. Yes, I see a little, fragile, misshapen old lady. How the hell did that happen?

It’s after 5 and I felt a bit weakish. I didn’t have the cane in my tiny room. I went to sit down and somehow I didn’t sit on the chair correctly, lost my balance and fell. I fall well but still make all kinds of noises along the way down. Tom had been passed out in the other room. He rushed in bloodshot eyes and all. This man does not wake up well in the best of times. I was flat on my back on the floor. There’s an upside to everything. Due to drunkenness, I had a bag filled with bags of tea on the floor. It was supposed to have been taken upstairs and out of the way. I can no longer go upstairs without help so it was lying there. Lucky! My head hit tea instead of the floor. So there I was. I wasn’t hurt but couldn’t move. This is a man with three sisters and I think he might have played with dolls or maybe not because he has no concept of how real limbs work. I literally can’t sit up. First order of business is to get me upright. He pulled but I have no strength at all apparently in my core. I slid back down. It took awhile to explain I needed something to hold onto to keep me in a seated position. We get there. Next step is get me to stand or into a chair. Ha! This is when I discovered my right leg no longer works. It cannot bend . I cannot even cry. Picture this. Sometimes, I have problems getting out of the tub. I lift my right leg with my arm. If it doesn’t stay up, Tom comes in and lifts it for me. I explained to Tom that we were going to have to do the same action but not in the tub. He was still fuddled. Back to I do not have doll limbs. The video would have gone viral. Somehow, we got both legs bent. Then I flipped over like a bug. Somehow, I managed to pull myself up onto the chair. Tom stumbled back to bed.

This was a pretty devastating evening. I knew I had deteriorated but not to this point. I guess I need to buy one of those I’ve fallen and can’t get up devices. I am so scared and frightened. I WILL NOT BE IMMOBILE. I WILL DANCE AGAIN. I must be delusional. The only thing to do is fight harder Someone just told me today, in another matter, that my persistence paid off. I guess I need to keep it up. I am losing strength all around and crashing

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?

Second Wheelchair Trip and Further Revelations

Posted on August 15, 2017 by tresswann

Yes, I had my first wheelchair experience in April at Mt. Sinai

In June, I had another, also at Mt. Sinai.

I was going in for my second round of Rituxin. Mentally, I was in much better shape. I knew what to expect and did not anticipate the treatment would result in death. In fact, I was looking forward to it, as this time I had a plan. I was working, it was summer and I was going to go to the gym and pump that stuff through my system.

I had a later appointment but we went in earlier in the hopes I could be squeezed in early. Despite working, I had been walking less so I was fatigued when we came off the bus. Plus, I was naturally nervous and that impacts my walking as well. We staggered into the hospital. The security guard came bounding over, asking if I wanted a wheelchair. No, they have a great ramp to the elevators. Then we walked the labyrinth to the treatment center. It looked different. T went to check me in as I sank into a chair. A male nurse came over offering a chair. I explained I didn’t need one to stagger the last few feet to lay down for 6 hours. I heard loud voices. Apparently, the treatment center had moved to another location, a couple of blocks away. T was demanding a chair at the same time the nurse was telling me that’s what we needed. In April, I was put in a chair for speeds sake and whisked along underground passages. This time it was outside sidewalks in NYC. I became this little old diminished lady in a wheelchair. No selfies. It was bumpy and I felt less than. Less than the full person I believe I am. People were looking over my head or avoiding looking at me. Ok, maybe it was in my mind. And yes, at that point I would really have had to struggle. The pavement was bumpy, tilted and crowded.

The elevator was horrible. Again, it must have been me but people were too kind and considerate. Everyone loomed over me and I felt tinier and tinier.

When we got to the right floor, T handled just about everything. It was, as if I wasn’t competent. I felt very, very small.

I was even wheeled to the waiting room. I hated feeling diminished.

The treatment moved forward and I was able to walk well to the bus and through the station. I had problems and continue to do so on the station stairs.

This is not going to be one of those cheery and then I overcame or realized what a blessing.

What I realized was unless I get better that I cannot work in NYC. This is huge as that’s where the money and the opportunity is. I see things that I want to do and my pre-condition brain says “what fun. Let’s do that.” And then I realize not happening!

When I was first diagnosed, for one brief moment, I thought I was going to be a poster child. I would learn all there was to learn and just be. First thing I received was a brochure with a woman on a scooter. I turned off immediately. I wanted no part and still want no part of that type of acceptance. The spectral leg, the cane have all set me back and pained me deeply. They are physical representations of my limitations. I have to accept them, for now. But now is becoming an infinity.

True confession: I was in DollarTree last week. It was early in the morning and I should have been at the peak of my energy level. Plus, give me a cart and I usually rock. This leads me to the walker that I ordered in January that stays behind the den door. Anyhow, I was destroyed. I could barely walk. For a brief moment, I wanted a motorized cart. I couldn’t believe me!

Everything is not all good all the time.

I am happy to say I am still fighting as hard as it is becoming. Some days, it seems insurmountable. I hate being confined to my body. Guess, I need to work on that spirit thing.

Oh, and by the way, my doctor said she noticed a spiritual change in me. She has me confused with someone else. There is nothing grateful or spiritual about this!

End of pity party, for now.

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?

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.