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Following the usual tradition for the day the SNAP card is loaded, I went out with the housemate to procure enough groceries from the month. I knew this was a bad idea after the cleaning session yesterday and taking someone to work this morning, but i did it anyway. I wanted to get it out of the way.   I nearly screamed  out as a brief spasm of pain went through the ankle, and I was grabbing my arm  in the car several times.

I made it through Wal-Mart, managed to pick up loratadine, forgot to pick up the ankle braces I had meant to pick up, and got most of the items needed for thanksgiving dinner and to get through the next month as well.   After that, we went to Sam's Club to pick up a few more items.  Before I got out of the Chevy S-10 Cab, the roommate uttered this line:

"If I see you wince even one time between here and the door, I'm forcing you into one of their mobility scooters."

I got out and made sure to stay ahead of her -- not an easy task while flaring -- until I got to the door.


 
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 I don’t know why, but I thought it would be good to look back at the past year and the stages I went through today.  Parts of my journey are ones I would like not to repeat, but they are not things I can take back.  Denial, anger, bargaining, depression and acceptance are part of it, but there are also stages that I went through in how I dealt with my new reality. Some of these mimic the states of grieving, and others do not. For me the stages were confusion, fear, a bit of anger, feeling sorry for myself and coming to the stage where I am now.  Something might lie beyond this stage, but I have yet to discover it.

Confusion set in when the severe cramps in my right thigh started to keep me up at night. I wondered what my body was doing and why it was doing it.  Having no insurance at the time failed to help the issue at all.  Trying to figure out what was happening to me and get some relief from the symptoms dominated my thinking.

Fear set in after the first clinic appointment. I was being asked questions about multiple sclerosis, diabetes, rheumatoid arthritis and several other autoimmune diseases. It seemed odd that they would even be asking me these questions since the pain seemed confined to my thigh. It was at that point fear set in.

The doctor’s assurance that it was a pinched nerve in the hip – miralgia paresthetica – only assured me for a little bit. Eventually the pain spread to other areas of the body and I knew something else was going on. I tried to seek other answers, but got told it was likely a meniscus tear. The doctor didn’t even admit she was wrong after the X-rays she ordered came back.  I wondered if it might be one of those scarier diagnoses the first clinic had mentioned.  At this point, I was still without insurance. Finally, I got insurance coverage back and saw my regular doctor. He said fibromyalgia.

At this point, I went through the anger and feeling sorry for myself stages. While I knew this was the best possible diagnosis for what was happening, it also meant he had let me know that I would likely have chronic pain for the rest of my life.  I was angry. I wanted to lash out at others, and I was wallowing in pity. This was the most difficult stage for me to leave.  I’m not proud of my behavior during this time. The misery I felt was something I wanted to share and spread around. With luck, this phase ended before it caused any permanent damage to some of my relationships

Eventually, I came out of this and realized whether I liked it or not – and I don’t –  that I was going to have to live like this.  The pain might be overwhelming at times, and I’ll have to put up with the depression and mood swings as they come.  And this is where I find myself now.  I’ve even come to the point where I recognize that doctors are not all-wise, all-knowing sages and have come to my own theories about what is wrong with me, even if I don’t think it’s wise to share them with my doctors.  I don’t know if this is another part of the process, where you get more and more pieces of the puzzle until it finally all comes together, or if you’re just waiting for your body to show more positive signs of certain illnesses.

As it stands right now, I’m pretty sure I have some kind of connective tissue disorder, especially since the most persistent pains seem to be just above the elbows and just above the knees. The ankles have decided to join the game more permanently know as well.  The fact is, I don’t know for sure, and I recognize that I could be wrong.

I don’t know what happens after this.

 Note: I still feel like crap today. The cough is getting worse, and it’s only be tampered by me sucking on cough drops all day.  I wonder if this is a result of the fluid-filled cysts caused by my Hashimoto’s Disease or just seasonal allergies.  Not that it matters either way. Coughing excessively is exhausting and it hurts after a while, with or without fibromyalgia.

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 The Parke County Covered bridge festival ends this weekend. Even though I have lived in Indiana for three years, I have not actually been to this event. Normally, I avoided it because it’s a crowded, over-priced affair designed to separate tourists from their money. I avoided local festivals for the same reason back in Pennsylvania.  I did feel, however, that I should go see it one of these years just for the sake of seeing it. The housemate, who feels much the same way I do about these festivals, asked if I wanted to go see it. Much to her surprise, I said yes.  After she asked the sentence and heard the response, she realized her mistake and looked quickly for a way out of it.

Fortunately for her, a quick limp into the kitchen provided her with the answer she sought. “Okay. We’ll go. But you do understand that you’ll have to walk a lot, won’t you?  If I see any indication that you’re not able to walk long distances, we’re staying home.”

Now, I did not have a good response to this at the time, but now I think I do. Many such festivals have taken the leads of stores and provided mobility scooters and wheelchairs for people with mobility issues to use. I think I’ll just suggest that we rent one to her if she balks about going.  After all, she doesn’t mind spending extra time in the store when she can see I’m in pain if it will save a few cents.

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 The doctor rattled off that he was prescribing two things for fibromyalgia over a year ago today. (I will have been Lara legally for 2 years in 28 more days.) It seems I’ve marked the anniversary by recovering from yesterday’s flare-up.  The  phone also rang twice for me this morning. One was the rheumatologist’s office calling to tell me my Vitamin D levels were normal, and the second was the Hamilton Center calling to ask me to come in for an interview with their job placement program. (I have misgivings about these programs, and Indiana’s “work first” model doesn’t work well for people with disabilities, but regardless of my misgivings there are things I need besides food.)  As I sit here, trying not to fall asleep as I type this, I’m wondering if the phone will ring again today.

The dental appointment went well, although it left some questions about things Anthem has told me about the coverage.  No new wisdom teeth.  I went to pick up prescriptions from Sam’s Club  later and I must have remained standing for too long.  I went into a flare, and managed to moan and groan in the rheumatologist’s office, and nearly screamed when the phlebotomist tried to draw blood for the Vitamin D levels test.  I’ve never had a blood draw hurt this month. Otherwise, I’ll be going back to physical therapy and I’m supposed to be referred to a podiatrist to see if I need ankle braces, while suggesting I continue to go for daily walks to strengthen them.  The podiatrist she mentioned – the same one who did the surgery on my bone spurs – is one I was hoping to never see again. It’s not that he was a bad guy. It’s just that he gave me the impression he should be getting ready for retirement.

Fortunately, yesterday is in the past and whatever fallout that has yet to occur is in the future. Today, despite the itchiness that always occurs after a flare for me, I’m calm and relaxed. There may even be pizza or fried chicken for dinner tonight.  There are two live action games this weekend, and I’ll have gotten paid from freelancing two weeks in a row now. Not to mention there’s a possibility of a steady paycheck in the future.

Sure, things are not great right now, but they seem to be picking up after months of just generally being crappy.  

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I’ve patiently waited for the reconsideration letter for SSI.  I know it was held up because they waited for records from my rheumatologist and the physical therapist. The mail came late today, but the letter I had been expecting arrived in the mail.  I prepared myself before I opened the envelope. The letter inside probably did not contain good news.  The first sentence of the letter confirmed the expected results. As before, I had received an ‘other work’ letter.   They were more specific about the types of work I could not do.  The letter said I can adjust to jobs that do not require no more than occasionally climbing ramps, stairs, ladders, ropes or scaffolds, balancing, stooping, kneeling, crouching or crawling while avoiding concentrated exposure to wetness, machinery, and heights.

All of these items seem to be carefully tailored to suggest that I could do my last job just fine as it required virtually none of these things, but it did require standing for long periods of time, which I also have difficulty doing. I wonder if this was carefully calculated to make me think I should feel guilty about being forced out of my last job.  It's hard for me to say, and I shouldn't attribute motives to an agency full of people who do not know me personally.

It’s not a surprise that the Social Security Administration would deny my SSI claim at this stage. The requirements for getting through on the first try are pretty specific, and I would not want to meet them. Making it hard to get is a good thing in a way, but it doesn’t make things easier for people who actually have lost the ability to work.  It’s a good thing I’ve got friends who can help me get through this, but they’re not exactly in the best shape financially, either.

I will just have to appeal the decision and go before an administrative law judge. In the meantime, I'm going to have to have a talk with the housemate about why it is inappropriate to extend shopping trips by fifteen to twenty-five minutes because she wants to buy glycerin to make her own body wash.
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Caption: People with fibromyalgia have to deal with body wide aches, painful pressure points, crippling fatigue, and severe depresson. What they hate the most is being told they're not sick.  Fribromyalgia is real, treat it right.

 
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 September is Chronic Pain Awareness Month. (Although I have to ask, how many people aren't aware that chronic pain exists?) I'll be posting something on them daily and trying to promote these posts. Given the events of the last few weeks, I thought it'd be time to revisit this photograph.  The next two days will focus on diseases I've been diagnosed with.

[Description: A brown-haired, blue-eyed woman on a beige background. She wears a purple shirt with a back and white-striped ribbon. Braces adorn her wrists, knees, and right ankle.]

Captiion:
  • Do you suffer from Crhonic pain?
  • Have you been told or do you feel you have fibromyalgia?
  • Easy or unexplained bruising?
  • IBS, Acid Reflux, or other Gastrointestinal issues?
  • Do you have hypermobile joints or  are you double-jointed?
  • Do you injure easily or have unexplained fractures or bruises?
  • Fragile skin that tears easily or poor or slow wound healing?
  • Do you injure easily? Unexplained dislocations or fractures?
  • Problems with balance? Are you the clumsy one?
  • Velvety smooth or stretchy skin?
  • Are doctors stumped or clueless when they try to figure you out?
  • Have you heard of Ehlers-Danlos Syndrome?




And the answers for me  right now are: yes, yes, yes (although I still believe this is PLMD in most cases), yes, no, yes -- ankles, yes, not that I've noticed, and I think my primary care physician has no idea what's wrong with me exactly.
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I tried to make potato bread last night, but after cutting and heating the potatoes for use, I  left them in the microwave and forgot about them. When it came time to think about tonight's dinner. I decided to skip the potatoes, throw some extra flourin, and use the french setting on the bread machine.  It worked well enough. Most of it is gone.

Now, if this flare would just go away.
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I chatted with an old supervisor at Sam’s Club today.  Such a conversation would have been quickly forgotten under most circumstances, had she not brought up a new employee who called off due to foot and leg pain. The former supervisor quickly speculated that the new employee was too young to have such pains.  She probably didn’t catch the look in my eye until I reminded her that she might want to be careful before continuing this conversation.  The former lead tried to brush it off by saying I had a medical reason for the pain.

I have never met the employee in question. I also understand that supervisory staff tends to be suspicious of new employees calling off for any reason.  However, the core assumption was that someone has to be older than their late 30s or early 40s to experience that kind of pain.  If I’ve only learned one lesson from my own experiences, it’s that people who are my age certainly can experience chronic pain conditions.  People who are much younger than I am have fibromyalgia, and more severe conditions like Lupus, and Rheumatoid Arthritis. Not a single one of these conditions cares about someone’s age, although middle-aged women are more likely to suffer from them than people of other demographic groups.

It seems that I am at the awkward stage of life where I am both too young to have the problems I am having, and I’m having the same problems because I’m getting older.  Some of these pronouncements have come within a few days of each other.  Either I have a great idea for a new Chronic Illness cat meme, or people really need to make up their minds.

Hiraeth

Jul. 21st, 2015 01:54 pm
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 I ran across this word on my Facebook news feed. The word is Welsh in origin, and it does not have a direct English equivalent. It is homesickness with a sense of a nostalgia. A longing to return to the home of your past, coupled with a fear that such a place may never return. It also carries the idea that somehow, the place you remember may only have existed in your head. (Warning: I seem to be having a low spoons/mana day so I may end this post abruptly.)

For the past few months, I have longed to return to Pennsylvania, thinking that the return would improve my situation slightly. The Keystone State does provide greater support for people in my situation. I've avoided seeking out a return. Money is one barrier, but I also know that I may just want to believe that the grass is greener on the other side. Returning home would also mean dealing with my family on a more regular basis, and that can drain a lot of energy.   I want to think that I'd be better off in Pennsylvania or any other blue state, but there is no guarantee that this would be the case.   

On an unrelated note, I recall another conversation where I said I could accept being in pain for the rest of my life as simply how things are. I wouldn't mind this situation ending, but the response surprised me. The other party in the conversation said, "I don't like to think like that." I didn't think I was being negative, but I don't see how accepting things are they ARE could be misconstrued as negativity.  I've found this to be a necessary step in dealing with other long-term problems.
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When my GP at the time gave me the fibromyalgia diagnosis, he asked about my quality of life. I did not know what the phrase meant then. Even though I’ve seen more people use it as I’ve read about the experiences of people with disabilities, I am still not sure what the phrase means.  Perhaps someone else could explain this to me.

Does quitting my job lower my quality of life?  Some people would say it does. The state of Indiana Family and Social Services Administration seems to think that I’m still an able-bodied adult.  I can forgive them for this since they do not have my current medical records. Staying on the job and the stress that came over worrying about being fired would also fall under this broad category. Perhaps the promoters of this phrase are talking about something else.

Is my quality of life lower because there are days when I must rest because of pain or fatigue?  I’m not bedridden, unlike some other fibromyalgia patients. Even if I were, not everyone needs or wants a great deal of social interaction. Some people would be completely content alone in a library at the end of the world, and I would be content to live in such a world even if I broke my glasses. It seems that we must look elsewhere to find the phrase’s meaning.

Is my quality of life lower because I no longer do some of the things I used to do? True, I don’t do some of the things now that I would enjoy doing. As we mature, however, we stop doing many things we once enjoyed doing.  All it means is that things have changed. I still enjoy playing with building toys, such as Legos and Erector sets, but I no longer play with these toys unless a younger relative is involved.  It’d be fun to break out the Legos and build things with them, but other adults would look at me strangely. Yet another exploration of the meaning of the phrase falls apart.

Maybe people think my quality of life is lower because I use a cane.  I’ve seen the occasional look of pity I get from older people. I have also heard phrases like, “Isn’t getting older fun?” Plenty of people use canes and seem to be content with their lives.  A cane is simply a tool.  It supports a painful limb, and it prevents the falls that occur because of dizziness or muscle weakness.

I can make guesses about what people mean all day. The phrase bugs me.  People seem to use this phrase when they want to make a comparison based on their lives.  The context suggests that there is threshold. If a person falls below this threshold, then their life is not worth living. I do not live anyone else’s life.  I can only say I am willing to continue this life.  If a doctor is really concerned about my quality of life, they can give me a portion of their income.  Supplementing my income with additional money would do more to improve the quality of my life than asking me silly questions or prescribing prescription drugs ever could. 
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I expected to start panicking sometime before they removed the bones from my toes when the podiatrist told me he scheduled me for the surgery. Oddly, I'm still not clear on why the doctor ordered the surgery, even though I'm pretty sure the podiatrist knows what he's doing on th is case. (I'm not too sure he's right about the soft tissue inflammation causing the ankle problems, but I'll wait to see if the orthotics actually help. The only thing I am sure of is that this is not fibro pain.

But at least the fear has not become overwhelming. It seems to be just a little bit of nervousness. It may increase now that there's a little less than 48 hours until the surgery, or it may stay where it is. Perhaps it's because I know a little of what to expect and I hope that some of the problems I've been happening are connected in some way.
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Last week, I was having a day at work I could have done without. Crab cakes do not normally bother me, but they smelled particularly fishy and I was having a hard time dealing with them. Although the smell was an overwhelming, it was a minor issue.  The pain, as it almost always does, got worse as the day wore on.  Normally, I can push through this, but I went into a flare by the end of the day.

Towards the end of the day, a nurse, who happened to have Lyme disease. She saw my expression, and she did not buy my usual statement that I’ll be all right eventually. I eventually told her why I was feeling pain.  It might have ended there, but if it had ended there, the story would have been unremarkable.

About twenty seconds later after the first customer came to my stand at Sam’s Club, another customer came. She had worked at the store before. The new customer started to give me unwanted advice about how to do my job, including when to put things in the oven.  I had said, in her presence, more than ones, that I needed to go sit down for a while. The new concerned-for-my-job customer would not shut up however, even as I clearly packed things away, in an attempt to single that I was going off the retail floor..  

Because I was trying to be polite, I said nothing. Eventually, it was the nurse who spoke up and said, “Ma’am, she’s not feeling well, why don’t you giver her a break?”

The helpful customer replied, “If she’s not feeling sick, why doesn't she stay home?”

To which the nurse replied, “It’s not an illness, it’s a condition.”

I think the debate continued for a few seconds more, but I was able to get off the floor and sit down for a few minutes.

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Despite having my funds nearly drained, I renewed my Y membership yesterday.  I went into the pool for a while and took some swimming. I also just took some time to soak in the heated pool. Muscles felt much better afterwards, and this feeling continued to today.  Because I was feeling better, I decided to see if I could handle the exercise bike again. I did not do the cardio workout, but put it on fat burn and set it for 25 minutes, with the caveat that if the pain got too bad i would get off.   I made it 22 minutes.

Now, I'll have to see if I can work more parts of my old workout routine into my fitness regimen. I'm going to keep swimming in it though.

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