Wendy The Wanderer

Stories Of My Life

Booger brains!

It’s pouring rain this morning. If there is FNB today, I can’t go. Even if someone picked up food for the giveaway, it would happen in the anarchist house and not the park. I can’t do 2 flights of steps. I doubt I could make it there and back, anyways.

Swallowing is sooooo hard! I haven’t been this bad in years. Breathing is nonstop painful and difficult. I feel awful.

Yesterday I got mad about my situation. I wrote emails to the doc in Utah who already prescribed IVIg and to my old Vermont neuro. I asked both of them for help. I asked the Utah guy to fight harder for me and I asked the VT guy if he would be my doc again and give me IVIg. Much to my delight, I got a long message from Vermont. He says I can be his patient again and get IVIg again as long as VT insurance will pay it. Neither NY or VT were against paying for my treatment in the past. For a while there was the PITA paperwork so a VT doc could not prescribe meds in NY. So, I couldn’t get IVIg at my local Adirondack hospital, but I could travel to VT and get meds prescribed and administered in VT, but paid for by NY. And you wonder why health care is an expensive nightmare!!!!

My brain is on overload. I could move to Vermont and get IVIg infusions. It’s about 2,300 miles from here to Burlington. I thought 900 to the Olympic Peninsula in WA was far! I don’t know what to do. Mostly I am really angry that all this messing around is necessary. I should be able to get life saving treatments HERE & NOW…then be able to plan for other things.

Just to get medical help, I would have to get rid of everything I own, or find a way to move it. I also need to get Olive and I from point A to point B. Then we need a place to live that’s cheap and handicap accessible. Then I could get IVIg. For me, it’s a big deal to get up and go to the bathroom! Just thinking about all this stuff wears me out.

Ever since the phone call from my Vermont neurologist, I have gone back and forth from euphoria to despair. I get excited that there’s hope to make me better, then go totally bonkers thinking about the logistics.

I have a lot to think about….yet
again.

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Tidbits

It’s interesting what info my brain gives up in dribs and drabs. As I was waking up from a nap this evening, I was thinking about the ER and doc visits. Both guys wanted to put me into assisted living. I didn’t give it a second thought, just said I’d rather die. If I had IVIg, I wouldn’t need assisted living!!!!!

Every hour of every day seems to bring a new twist. I am having some weird and creepy symptoms. In the early evening, I just couldn’t breathe any more. I got in bed with the CPAP and oxygen. For several hours I had sickening chills. Every inch of my skin felt raw. My hands and feet were ice. My head and torso were burning up. The nausea was intense. My only guess for the source of infection is my intestines.

Night after night, a homeless vet and his girlfriend park in front of my window. Whether the window is open or closed, the smoke pours in here through the screen or A/C. I am in tough enough shape without them. I got mad tonight and went out to give them the riot act. They had taken off. My asthma is pretty bad :-(

On the way back in, all three people out and about stopped me to ask if I was alright. Geeze! It’s after 10PM. I look like hell even outside in the dark. Once I try to talk, they get all worried. Me, too. That short trip out the door and back in my power chair was an energy vampire.

I wanted to write more down…but what? Oh, that’s it! I am either having TIAs or seizures or WNV flare ups. Maybe all of those? For days now there are times I go into a trance. I can see my peripheral vision suck in from both sides until I am looking down a tunnel. Within the small circle of objects, everything starts moving around and distorting. Floor tiles morph into all sorts of shapes and start moving. The walls undulate. I want to close my eyes real bad, but it feels like I will die if I do. It’s very painful to keep my eyelids marginally open. Stuff like this descends on me out of the blue and can go on for half an hour or more. My ears either roar or ring. Then, like flipping a switch, I feel “normal” and can hear and see. Very surreal.

I took this pic maybe a week ago? It’s the tallest and widest sunflower I have ever seen!

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Meh

I’ve started liking that word. Even my cat says it. I feel meh.

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I want to feel excited, but I feel meh.

Again, I am trying to decide what to do. I need to follow up with a doctor. It’s hard to get excited about seeing any of them. Last time I saw the internist, he ordered the blood transfusion. I like him, I just don’t like going to his office. Public transportation to and from there is long and tedious. What I don’t want is the insurance company sending in their caseworker. I thought they were going to be useful. Ha ha ha ha. Joke’s on me. I trust my internist more than most people. I don’t trust the insurance company. I would like help accessing appropriate care. I sure was dumb to think their purpose was to help with that :-(

I forgot if I mentioned it here. Right after my appointment with the pulmonologist, the snarky caseworker called. She wanted to know how the appointment went. I told her that inhalers are not helping me. I said my breathing problem is mainly muscle weakness. I told her I didn’t have asthma like this while getting IVIg. In THE most annoying, condescending voice she said “I am sorry you feel that way”. I went nuts on her and hung up. Yes, I am sorry I feeeeeel that way, too! The weakness in my breathing muscles and the fact that IVIg keeps the scary breathing problems at bay has been a fact of life for years. It’s not just something I dreamed up. In order to justify my IVIg denial, they are trying to make me think it’s not an important treatment and I am being unreasonable to think I need it. Nope, they are not on MY side…they just don’t want to pay for it. I hope God has a special place in mind for people like that. I sooooooo wish she could have been the one to experience what I did on Saturday…and most days! She would have a whole new appreciation for the ability to breathe….and how important IVIg is. I cannot imagine what sort of personality is required to have the job of denying needed care to make more money. I wouldn’t do it for a million dollars.

I couldn’t speak well enough to be heard or understood on the phone, so I went over to the kindly old doc a block from my house. They agreed to see me right away. Just going a block in less than 80 degree heat made my eyes almost close shut. I look like hell.

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While talking to the doctor in his ice cold examining room, my eyelids went up.

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I couldn’t talk much above a whisper and my voice was nasal and raspy. I was CALMLY struggling to breathe. I told the doc I was there for his wisdom. I said I knew somebody like me was too much of a disaster area for him, but I trusted him and wanted his opinion. I handed him my phone and had him watch the fasciculations. I told him that I have been getting weaker and weaker for a month. I described what happened on Saturday and I told him the ER said I was having a panic attack. I asked what he thought.

The doc was incredulous that they said panic attack. He said it was obvious I was calm during the fasiculations. He said he knew me well enough to know it was definitely not that. He said it’s myasthenia gravis. He got out his doctor app and looked up all sorts of things. He said I need IVIg. I told him about the denial and the idiot, obstructionist neurologist who was the root of my lack of MG treatment in Utah.

He went through lists of drugs to see if I had taken them and if they helped or not. At first he decided to give me a burst of prednisone to get me out of crisis. Then he decided that would make the diverticulitis and fistulas worse, plus keep my belly wound from healing. Then he was ready to prescribe Rituxin, but the contraindication is that I can’t have an active infection. I always have an active infection :-( I had gotten sick on Imuran when it affected my liver. Cellcept takes months to work and leads to more infections. He said the best treatment is IVIg. He says it’s really the only treatment I can get.

The whole time the guy was brought to tears several times. He held his head, he kneaded his forehead, he wrung his hands, he kept twisting in his seat. The poor guy was in physical pain, trying to figure out how to help me. He held my knee tightly, he hugged me several times. Never have I seen a doctor so tortured by my diagnosis and circumstances. He had choice words to say about my insurance and the hospital system I am stuck in.

I am getting tired of hearing this one. He said I will die without treatment, but the treatments available to him will kill me. He looked like his brain was going to explode. He spent way more than an hour with me. He is going to call other docs and discuss me.

We talked about me dying. He said suffocating wouldn’t be too prolonged. He knows I am not afraid to die. He told me to stay in the coldest A/C that I can bear and to use my CPAP and oxygen many times during the day. He said to come to his office or call him if I need him for ANYTHING. He was soooooo shook up! He even pulled his hair. He said it was his duty to do no harm and his duty to keep me from dying, but it was impossible. No matter what he did might kill me, whether it was meds or doing nothing. He didn’t want to be the doctor that finally did me in. I reassured him that docs have thought I was going to die many times before, but I am still here. I told him God keeps me around for some reason. He was so distraught when he opened the door for me that the office staff were visibly shook up. He said bye and I said goodbye. He involuntarily sucked in a sob. The waiting room was packed thanks to me. They all stared in silence. The whole thing was like something in the movies.

Nothing like a little drama to start my day. Got to the apartment lobby door on the outside and a woman stopped me. She asked if I was OK and said I didn’t look good. I started laughing/wheezing/gasping. I said I look like hell. She said she didn’t want to say that, but yes….I looked like hell.

I am blankety blanking weak. Now I am getting fasiculations in my upper lip and forehead and down my throat. My pointer finger keeps having spasms. I go to type a letter and my finger spazs at an unnatural angle and hits the other side of the keyboard. I feel like there’s an electrical storm in my body.

I asked the doc multiple times if he thought I was crazy or having panic attacks. He gave me the hairy eyebrow and very somberly said no. I think he wished that was my problem. Sigh…

Ha! So much for my meh day!

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Why do I write a blog?

I have said this many times. I think the biggest reasons for starting each post don’t vary much. I work out my thoughts and my life by writing. I could just put in on paper and keep it to myself. But there’s more to it than that. Sometimes it’s easier to write a blog than email a bunch of people. One of my favorite reasons to write is to vent. I get out my frustrations by writing about them. I also like to keep track of medical stuff and save pictures here. I rarely think about who is going to read my blog posts.

I have said this many times. I honestly don’t know why people read my blog. I am pretty boring now that my full time job is being sick. You would think that if people don’t like who I am or what I write, they would go away and never come back. I do that all the time. If blogs bore me or the politics get irritating, I just move on. No need to stick around and hate them.

Without fail, the people who leave the nastiest comments on my blog are the ones hiding behind aliases. I also notice that the people who think I should follow their advice even if I don’t agree with it, are the ones who don’t understand my reality. It’s kind of like being mad that a young black man in a hoody does not want to take up jogging in the city. It’s not a good idea under the circumstances. It might be a good idea for YOU.

And how many people who point out my faults and dislike me for them are telling the story of their life, in public, for all to see? We can all find fault with other people’s looks or brains or choices. What good will that do? Shaming people doesn’t change them for the better. We only change when it’s to our advantage either financially or morally or spiritually or whatever. Some things just are. Disabled people are not a sexy, glamorous subject. Neither are people living way below poverty level. Most people would rather avert their eyes and forget.

Right now my greatest irritation is coming from a few people on support groups. I keep being told that housing for low income people is 30% of income. Nope, that’s only if you are lucky. Then folks insist that I am lying about how much SNAP I get. I wish! Others think all people on disability are lying, scamming and lazy. There are plenty of people who insist I eat all organic or gluten free or whatever they believe is best. Then from every direction I am told I would be better off with alternative medicine. Geeze, people, get a grip! How many times do I have to state my income and fixed expenses? That’s all I have to work with. REALLY. And no, the government isn’t as generous as you have heard on some talk radio show.

I don’t go to Food Not Bombs for fun and excitement. I go so I don’t have to live off dry beans and Ramen. The food I am given is not what I would choose if I could just buy things. I am grateful I get food. I don’t ask my church for food because it rarely turns out well. It’s easier, with less obligation, to get food from the anarchists. It was a real bummer I was in the ER on Saturday, instead of the park.

I could go on and on about misperceptions. There are lots of them.

Then there is imperfect old me. I have baggage. I was abused as a child and abused in relationships. I have made stupid mistakes and naive mistakes. It took a long time for me to grow up. I didn’t have a clue what normal was or how to be it. There are lots of labels for my deficits. PTSD, ACoA, chronically ill, and dozens more. Do people really need to keep bringing up all my classifications? I know I am a mess. I know I could be a better mess. So? Your point is? Have YOU fixed every flaw in your personality or health? Why not? Snicker…..

I am not a project. I welcome suggestions from time to time, but unless you are God, I am under no obligation to heed them. I have free agency and most of the time I know what I want or don’t want. I know what I can and can’t do or won’t do. It takes all kinds to make the world go around. I am not you.

Even though life hasn’t been easy…under the same circumstances, with the same knowledge I had when decisions were made, there is very little of my life that I would do different. Maybe my choices don’t make sense to observers, but they make sense to me.

Do I wish that outside influences on me had been different? You betcha! But those are things I had no control over. It doesn’t matter what I wish had been better or different. I can only keep moving forward.

If things are good, I mention it here and that’s it. There’s no angst. There’s not much to discuss. I regularly tell God about all the big and little things I am thankful for. When I talk to friends or bump into strangers, it’s generally a good time. Not much need to discuss it here. But….when I am mad or frustrated or trying to figure things out, it’s often on my blog. I need to get the bad stuff out of my head ASAP!

If you think I have missed some obvious solution, go ahead and let me know. Remember your solution might be my nightmare or impossibility. It’s a suggestion, not an imperative.

A few times I have told bloggers something I thought they weren’t aware of. It was sound information. They didn’t take it as helpful info, they thought I was being mean. Oh, well. Other times I tell people about things they are eager to know and they are happy. All we can do is guess at what the other person is looking for and do our best. Don’t take it as failure and don’t stop trying to help others. If you meant no harm, take no offense.

Gee, I got this far and got another not helpful and inflammatory comment. The person thought that me being virtually paralyzed, unable to take full breaths and choking wasn’t a good enough reason to go to the ER. I had written days before that I didn’t know what to do and didn’t know if I was going to get better or worse. My bad for not being clairvoyant. No matter what I do, there’s someone always way smarter than me on the sidelines. I wish I possessed such superior intellect and reasoning. Snicker…..

Today has been a challenge. I couldn’t swallow food this morning, but now I can. About a third of the time I choke on water. My chest still hurts like crazy and the asthma from yesterday still lingers. I have stayed as cold as possible. There have been no stroke- like waves of weirdness today. It still terrifies me to relive what I can remember of my body trying to shut down yesterday. When you can’t breathe, it feels horrible :-( When you can’t move, either, wow. It’s the stuff of nightmares.

People with ALS, MS, strokes, MG and all sorts of diseases live with scary flare ups and uncertainties every day. We all ultimately die. Sometimes our life can be prolonged. It’s not neat and tidy like on TV.

We live in the UNITED states. Disability and insurance for the disabled are federal and good anywhere in the country. Administration of health care is different from state to state. There’s no way to determine ahead of time if an area is going to be ideal or not until the experience unfolds. I had no idea that I would not get the same level of MG care in Utah that I got other places. I thought it might be better! In Vermont, rich and poor were treated pretty much the same. In NY, in the Adirondacks where I lived, was a mix. The problem was accessing specialists. So, I ended up back at my Vermont neuro, which was quite a trip. Arizona was a very divided state between rich and poor, but I lucked out with a good hematologist/oncologist. It doesn’t matter where I live…there will be pros and cons and trade-offs. One thing I love here is access to transportation thanks to my Paratransit card. I wish I felt better so that I could explore more. I might have had a totally different health care experience in another Utah town with a different insurance provider. I think here I have 3 or 4 choices of plans. It’s all a crap shoot.

I came to Utah when I couldn’t find affordable housing in Portland. I was excited about doing LDS stuff in SLC. I imagined myself staying busy with family history and temple work. I didn’t know I was going to get WNV and a cancer diagnosis and operations and other new disabilities. I didn’t even suspect that out here in the desert is some of the worst air pollution in the country! At least I wasn’t homeless :-) It was a lot easier to get an apartment here.

No matter where I go, what I do, how I feel or what kind of health care I get, there are going to be ups and downs. Any time the downs outnumber the ups, I am all for trying something else. I have no ties to Utah. I don’t really have any ties to anyplace. I am adrift. I miss the me that could live in the woods and be a farmer. That me disappeared years before I left Vermont. I have to keep adapting to each new reality. My favorite way to adapt is to go somewhere else and try something new. So…stick around or leave. If my roller coaster life is not your cup of tea, figure out where you’d rather be. If there’s something about me or my way of life that intrigues you, stick around. It seems so easy and sensible, huh? :-)

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Mad and discouraged

So, once again, I have to gather up all of my courage and strength to fight the health care system. Almost every time I have gone to the ER, I have been sent home. Almost every time it turned out to be something serious or life threatening. Can you imagine this happening to you over and over?

I slept a lot since coming home. With MG, the muscles get stronger with sleep and cold. They are better than when I called the ambulance, but they are not doing well at all. Many of them are quivering. I am so darned weak. I just broke a cup because my hands don’t work right and an empty cup was “too heavy”. Dropping things has been a constant in the last week or so. The elephants rarely get off my chest. I need to be using my CPAP and oxygen regularly because my breathing muscles are so weak. Today the wheezing and rattling in my lungs is even worse :-( I hate breathing tests!!!!

I suppose the mold exposure made my breathing even worse than my usual MG stuff. And the incisional hernia is affecting me about like being 8 or 9 months pregnant. It pushes up into my lungs. New are the spasms in my diaphragm. They are getting more and more frequent.

The buzzing, quivering thigh muscles do not feel like my usual MG symptoms. Usually my legs just plain feel weak. I don’t know what’s going on. I wish that if I have to be disabled and sick, that I only had normal, run of the mill ailments. I don’t want to be the most complicated patient or have the weirdest diseases! When I fall apart, I want matter of fact treatment and care. Why does this all have to be so difficult?

Ironically, if I killed myself right now, people would think I was justified because there is so much wrong with me. I have a whole basket full of inoperable problems and extensive health challenges. No!!!! There should be more done to help me keep living! We already know a few things that work. Other people get those treatments. Instead, my care is based on political party and cost to the state and the hugely big business of the hospital and the insurance it owns. Lots of people make lots of money off my disability.

Right now my diaphragm hurts on the left side. When I take deep breaths in, only my right side moves up and down. This has happened many times in the past, always with bad results. When Mestinon ceases to be enough to get the muscles to work, other treatments are needed. If I can’t get IVIg, I at least need prednisone or IV solumedrol. It is so hard to keep up the fight!

In the mix are my intestines. I continue to have the low grade fever and pain from where the fistulas are. The hernia is tight against my skin from bloating there. The hole in my belly is once again split open larger.

I sound like a stuck record. My only hope right now seems to be moving. Words cannot adequately describe how disappointed I am in the state of Utah. I absolutely do not understand how the prevailing religion here can blithely treat it’s most vulnerable citizens with so much contempt and disdain because of politics. It SHOULD be a place that cares more and does more than the unchurched states. Welcome to Reality 101!

Despite my cynicism, I believe that pure religion, minus the influence of some people and politics, is true and correct. I will be glad to shake the Utah dust off my sandals when I leave.

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I am lost

I don’t know what to do. I woke up in the early AM. I was choking, had gut pain and felt weak. While in the bathroom, my face and tongue went into fasiculations. I took videos. Then I got too weak to hold my arms up. My thighs were doing that buzzing, tingling creepy weak thing. I was choking on and coughing out spit. The choking was intense. Then my limbs got so weak that I stopped being able to use them. As long as I kept my elbows close to my sides, I could still use my hands. I called 911.

They sent 2 ambulances and a fire truck :-o I never even saw or heard them drive up. They took me to the ER. I was one big lump of dead weight. It took 8 men to move me. A few tests were done and they sent me home. They said whatever is wrong with me isn’t “emergent “. I feel way worse now than last time this happened and the other hospital kept me 4 days last year, while pumping me full of solumedrol.

I feel like I got hit by a Mack truck and was squished flat by a steam roller. Everything hurts. It’s hard to breathe. I am a weakling. I can’t swallow food. I can barely lift my arms or legs.

I sat in the A/C until I had maximum strength and took a 4 hour nap with my CPAP and oxygen. I woke up with gut clenching pain. I am still real weak. Swallowing is scary. I am thirsty, but my throat isn’t working right. The way many people with MG die is choking to death.

My ER nurse told me that from his point of view, he is glad this state won’t pay for my IVIgs because as a taxpayer, it’s money out of his pocket. That’s the prevailing attitude. It has been 28 months since my last IVIg.

I have been sliding downhill into this weakness for a long time. It was terrifying to go from asleep to profound weakness in a matter of minutes. The same thing happened in Florida when I overdid it while trying to pack up and clean out Rhett’s apartment. They kept me in the hospital 2 days that time.

I had a breathing test in the hospital that gave me a whopper of an asthma attack. Now I have deep wheezing and rattling in my lungs. Breathing is only getting more difficult :-(

I am basically in shock. I don’t know how to get help or how to get better. I don’t know where to turn. All I know is that I need to either go back to one of my good MG doctors or go somewhere with better healthcare.

I just looked up choking with MG. This article hits hard. The chance of death without treatment is 25 -31%. It also mentions atelectasis that scans show I have. I feel like they WANT me to die in this state.

http://www.mdguidelines.com/myasthenia-gravis

I am choking pretty bad tonight. My body is running out of strength to even cough right.

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I have a hard time being good

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I spent the whole day either sleeping or trying to chill out and stay calm. Still choking, still struggling to breathe. Late this afternoon I took out the garbage and recycling and decided to keep going. I had to stop several times before I even got out to the road. A woman was walking her dog and ran over to me to ask if I was OK. She said I didn’t look good and should go back inside. Just about everybody I passed looked at me worriedly or asked if I was OK. And I thought nobody could tell!

Because I like to push my limits, I went 3 blocks and got on TRAX. People looked at me in horror :-o The A/C was nice. Got off in front of Trader Joe’s and bought one shopping bag of chicken burgers, turkey burgers, fish sticks and kefir. I think every single person who works at TJ’s asked if I was OK.

By the time I got back to my apartment building, one eye was totally shut. People in the lobby wanted to know what was wrong with me. A couple wanted to call the ambulance. I guess I am unsuccessful at trying to act normal. Sigh.

The above pic is after changing my clothes and cooling down for a few minutes. The below pic is after 2 hours chilling. At least you can tell I am trying to smile :-)

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I have been talking to my MG group since yesterday. They say I should go to the ER. You folks who read my blog must know by now that I try to avoid the ER unless I am about dead. I HATE going to the hospital!

Most problems get better over time. A few things get worse. It’s really hard to figure out which way a health issue is going to turn out. Breathing is pretty darn important. I sure am glad I have my CPAP and oxygen to prop me up.

If I still had a visiting nurse, they would probably have made me go to the ER by now.

I suppose I am going to have to make these decisions more and more frequently as I get older. I need a class in how to know what to do and when. Also, it’s hard to think clearly and rationally without enough oxygen. Sigh…..

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Got food in the park

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I got to the park later than usual. The tables were up, the food arranged and people were in line. I got at one end of the line. At the coin toss, I was first! :-) It was good stuff today. For brunch, I had the wrap, a tomato, some chips and a piece of pie from FNB, with half of an avocado I bought.

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I came home and talked to a bunch of people lying in wait in the lobby. I was literally pounced on. I don’t come out and talk much. I always run out of air after awhile. Today I came back to my apartment once my left eye was in perma-droop and I was slurring my words. Stupid MG!

I dredged up enough energy to put all the food away. Now I am sitting in the freezing A/C, trying to encourage my muscles to work again. I am grateful there is a way for my muscles to rebound! I was just thinking how awful it would be if I just STAYED this weak even with Mestinon and coldness. It’s something I am worried about lately. Even sitting still gets to be too much. My breathing is a huge effort and my arms feel like lead.

Yup…did another stupid thing. At 3:30 there was a quarterly tenant/management meeting. I went there and hung out near the door, but not inside the community room. When it looked like things were about to start, I went in, just inside the door. Right away it was real hard to breathe. The resident assistant opened the outside door and that was a little better. But then she closed it because it was hotter outside. My chest was heaving up and down. I felt like I was going to suffocate. I zoomed back to my apartment. The A/C helped me breathe.

Next thing I know, the manager is opening my door! He thought if I sat in a different corner I would be able to breathe better. Too bad that’s not how asthma and MG work. With all the people in that room, I was instantly allergic. He thought I was just claustrophobic. I wish!!!!

I have been wondering all evening what to do. At what point do I go to the ER? I feel like I am right on the edge of MG crisis. The last 2 times I got up to pee was soooo difficult! There is a whole herd of elephants on my chest. My lungs sting. The weakness makes me feel encased in lead. Every once in awhile, I start to choke and I wonder if I will be able to breathe again. My heart pounds so hard that it moves my whole body around.

I have a wicked bad headache that’s trying to be a migraine. I had to close the blinds because light hurts so bad. Then there’s my belly wound. It’s dripping yellow fluid and keeps bleeding. Around the area my belly button should be, deep in my belly, it hurts weird. Infection? Fistula? This is my third week of a low, but persistent fever. Infections can bring on MG crisis, so these problems might be related. I guess time will tell if I am going to get worse or it will ease up. I rarely know what to do at this point.

Crap. Still getting worse. I choked while sipping water and now I am choking on my own spit. I used to get this way a lot before IVIg. Any colder from the A/C and I am going to get hypothermia. I hate it when I run out of self-help ideas.

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Free agency

One of God’s greatest gifts is free agency. We can make choices. At different parts of our lives we see things differently than others. Hopefully our decisions are guided by the sum total of our experience and understanding at that point in our lives. Hindsight is easier than making decisions in the present. Still, we must push forward with our lives and keep going in the direction we think is best.

Along with free agency, we also must face consequences. Although we can choose anything our heart desires, those choices mean certain things will happen.

When our bad consequences catch up to us, it’s not much fun. I like the good consequences better :-)

There is a reason why we form opinions and hold to them. I have NEVER met any 2 people with the same opinions. We take in information, sort it out and come to conclusions. Our opinions are ideally a balance of heart, soul and intellect. They are formed because of life experiences. Sooooo many inputs can go into why we believe what we do.

What seems to be missing nowadays is frank discussion, respect for diversity, compromise, etc. We each have free agency. We don’t need thought police. Only if we put other people in danger, are we constrained. I don’t like lots of things other people do. I also love things most people ignore. There’s room for all of us. I don’t feel the need to ban movie theaters because I don’t like going in them. Sleeping in a hotel makes me feel like a prisoner. Camping makes me very happy :-) Some people feel the exact opposite. Some like both. To each their own. When I was younger I liked movies. I reserve the right to change my mind at any time.

Right now, I want to move. It sure is hard to breathe in SLC! Last night the clouds were black and racing across the sky. When I heard a noise, I looked up, expecting rain. Instead, we had a monster dust storm. It was quickly followed by hail, then pouring rain. When I wiped off the counter the TV is on, the amount of dust was amazing! Our air quality continues to be crummy on almost a daily basis. There is usually smog hanging over the valley between mountains.

I don’t like staying put. I like exploring the world. I am very ready to try a different environment. I grew up in NY and went to college in TX and MT. Moved back to NY, then to various places in VT for 26 years. Next FL and MO and back to NY. Then AZ and an attempt at OR and off to UT. In between those places, I have camped all over North America. There is no perfect place, just like there is no perfect mortal person. We like or love people and places and move on. Some people and places stay in our hearts forever and for others it’s good riddance. I like getting to know and getting to see lots of people and places.

Today Heather went to Sequim, Washington. She stopped at the apartments I want to live in, she drove around town, she visited the bay. I got a running commentary and pictures. I am soooooooo ready for a new adventure!!! I hope an apartment opens up soon. I hope I can figure out how to get there. It’s REALLY important to have hope and something to look forward to. The last couple of years have been rough. If I have to keep fighting the same battles, at least I will get to do it in a different place with new quirks and problems. I have always had itchy feet.

The Sequim area is known as the “blue hole”. That’s because there is lots of rain to the east and west, but Sequim has Mediterranean weather instead of rain forest weather. Here’s an interesting quote…

Washington’s geography, especially the Cascade Mountain range, produces two vastly different climates in eastern and western Washington. Western Washington is often greatly influenced by the ocean, and is much wetter and milder than Eastern Washington. Additional stark differences are produced by the rain shadow effect of the Olympic Mountain range, so that for example Quinault has an annual average precipitation of 137″ but in Sequim, only 56 miles away as the crow flies, the annual average precipitation is 16″.

So, how ironic is it that it was raining in Sequim today? People in town were excited. Heather, less so.

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Not my day

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The hour by hour forecast said 50% chance of rain at 10AM and 80% at 11. I wasn’t so sure I wanted to go out since there’s a flash flood alert. I don’t feel well and was not in the mood to be struck by lightning or get soaked. It’s 7/10ths of a mile from my place to FNB. At 10:30 the sky was overcast, but not too bad. I packed my umbrella and was off to the park. We all sat there waiting and waiting. No food :-( Nobody picked up stuff to be distributed.

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A woman in line told me to go to Jesus Feeds. She said it was from 11 to 1:30. It was at the church I went to for Thanksgiving dinner. I was hoping for something good to eat today. She said they had meat! I was stupid again. I shot up insulin and wasn’t hungry for breakfast. I figured there would be something good to eat at FNB. It was a lot farther to this church than I thought. Of course the sun was out the whole way there! Got to their parking lot to see big, burly guys unloading canned goods off pallets. The food pantry is in the basement and there is no elevator :-( Worst of all, the hours of operation were not what the woman said. They are 3:30-5:30 Tuesdays, 3-5:30 Wednesdays and 11-1:30 on Thursdays. I felt sooooooo sick and wiped out tired after going so far. It was 1.3 miles from FNB to the church. As I left the church parking lot, the rain started. I burst into tears. There was a long way to go home. Now I know it was 1.6 miles

That reminds me. I am mad at Robin Williams for committing suicide! I drag my sorry body around, I know depression, I struggle with food and shelter and a zillion other things. If I have to live through this, he can, too! Suicide is the coward’s way out. If you are alive, you still have hope. The next day may or may not be better. You will never know if you’re not alive to experience it. Each of us are role models for other people, whether we like it or not! Oh, great. I just heard that Fox News called him a coward. It didn’t go over well. I hold to my belief that there are all sorts of painful mental and physical illnesses. I do not think suicide is a solution. The solution is to get help and fight the afflictions. It takes a lot more courage to stick around. Life is not easy. I am too nosey and curious to give up. When God wants me, He can have me. Until then, I have things to learn and see and experience. The process can be painful, but life has lots of lessons to teach.

No wonder I felt absolutely awful by the time I got home. I went 3.6 miles over bumpy sidewalks in sun and rain. I was an idiot. This is an all too often occurrence. I do stupid things in hopes of yummy food. Since I was so hungry, I bought the second cheapest treat in the park. A snow cone would have been 25 cents cheaper. I was not impressed to have forked over $2.14 for this tiny cone. Arctic Circle has them twice as big for 85 cents. It wouldn’t have been so bad if it hadn’t made me soooo queasy on the way home. I am kicking myself big time for my mistakes today. It would have been cheaper, easier and less painful to stay home.

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Soon after I got home, the pharmacy called. They are bringing meds on Wednesday and I owe money for them. At least every time I DON’T go to the doctor, I save $3. I wish there was a way to actually make me better. Pharmaceuticals are sometimes a bigger curse than blessing. About the only thing that works is enduring to the end, aiming towards the peace of eternity. I have thought about suicide many, many times in my life. It doesn’t seem like a great idea. You might miss something good or miraculous. Actually you WILL miss those things! It’s important to hang in there, not give up and hang.

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