Posted by: kherome | March 17, 2010

Spring is almost here!

The weather has finally turned around. We even had 60’s today. I’m thrilled because this winter was a long, grey, blah mess.

It seems that folks are just so crabby lately! With the newly improved weather I hope that improves soon as well. I’m just so tired of people behaving the selfish, cranky, self-absorbed way that they do.

Things have been ok lately. I’ve been struggling to lose a few pounds. So far, it’s not going that well. Despite eating well and exercising I’ve not lost a single pound. It’s disappointing but I’ll keep trying!

Posted by: kherome | February 14, 2010

Silence is golden…

Lately I’ve been excruiatingly frustrated.

However, the good news is that we’ve had some spectacular weather the last few days. It was warm and sunny! I’ve been able to finish some of my knitting, and got a little of the housework done.

Nothing much in the way of “interesting” or “blog worthy” has really happened, hence the long silence.

Despite the nice weather I’ve been in a bit of a funk lately, and hope to pull out of it soon.

Happy Valentines Day all!

Posted by: kherome | January 9, 2010

No, I didn’t forget I had a blog…

I’ve been busy lately, and too tired to care about doing much. We finally broke down and ordered a new bed. I just can’t get any sleep anymore. I dread bedtime because no matter how tired I am, I know it’s just going to end up a frustrating exercise in tossing and turning  and trying to fnd a spot that doesn’t hurt too badly. So I went and tried out a bunch a mattresses and we finally settled on one. Please, oh please, let it be comfortable! I also bought a Tempurpedic pillow. They are ridiculously expensive as far as pillows go, but when you have problems like I do, you get desperate enough to try anything that might offer relief!

The knitting is going better. I am not as tense so the hand pain isn’t a bad. I haven’t been spinning too much lately. I have a really nice Merino colorway that I am in the process of spinning but time eludes me. I have 3/4 a bobbin of it sitting on the wheel but I just can’t seem to get back to it.

I am still wishing for the housecleaning faery to make her visit. Honestly, with my DH gone so much, and with my fatigue, and stupid hours at work it just never seems to get caught up. I really, really wish it would. I need 2 weeks off of work to just tackle everything. I am not a fan of “a little at a time.” I’m more of a “pull the bandaid off quickly” kind of gal.

PT is going well. My neck is unbelievably spastic. The PT is constantly amazed at how tight the muscles are. I told her they can’t help it, they are holding my shoulders together with all their might. Can you imagine? If the muscles relax my arms will roll right out of their sockets.

A couple of weeks back DH and I went to see the movie Avatar. I loved the movie. The effects were great, and I liked the story line. However there was one thing. The main male character is paralyzed in his real life. So when he becomes his Avatar, he isn’t anymore! As you can imagine he’s quite thrilled about that. Somehow, it just made me sad. I couldn’t help but put myself in his place and wonder what it would be like if we could really cast off our broken selves and start anew in a fresh, healthy body. I would give so much to be able to get a fresh new body that didn’t hurt and fall apart at every turn. I know that this is my lot in life and God made this choice for me for a reason. I know it isn’t my place to wish for things that can’t be.  I know, I KNOW…THY will be done, not MY will be done. But how do you let go of wanting to be whole again?

Posted by: kherome | December 30, 2009

Post Christmas update

Christmas was nice, but the bad weather kept some from being able to come. When you live up here though, that is to be expected I guess!

Since I spin yarn on my spinning wheel I decided that I should learn how to knit. Great idea…or not so much. I find it very difficult, compounded by my EDS making my fingers and wrists super sore. I can only hope that this gets better. Perhaps as I gain some skill I won’t do the things that are making my hands so sore.

These days I have been so exhausted! It’s not due to the holidays either, as far as I can tell. It seems like I require more and more sleep just to feel normal.  No one can tell me why, other than it’s just the EDS and Fibromyalgia. Hopefully I can find some relief soon, because I am having a tough time functioning this tired.

Posted by: kherome | December 20, 2009

Getting ready for the holidays

Ok, the count down is on! Christmas is THIS Thursday. My house is a mess, the dog needs a bath, the food needs to be bought…Phew!

I decided that this year I’d make a ham for Christmas, even though I don’t eat meat. Usually I make turkey, and one year a goose (that didn’t turn out well…) so to mix it up, ham it is. So I have to get crackin on that.

I did manage to get the dogs bath done this morning, and he is drying/fluffing as I type. He is a hound breed (Rhodesian Ridgeback) and as such tends to smell a little doggy if he doesn’t get regular baths. Especially if he finds some delicious pile of stink to roll in somewhere out on our farm. Dogs…

On the upside I was gifted a beautiful braid of hand dyed superwash Merino wool in shades of blue. I’m spinning it up on my spinning wheel and it’s coming out nicely. If I can get it fine enough I’ll be making some socks with it. If it comes out a little thicker then perhaps a scarf. Whatever it is it’ll be super soft and pretty.

After my sleepless night I am still feeling pretty rotten, but it’s a new day so off I go to get some work done.

Posted by: kherome | December 20, 2009

Yet another EDS trial

It’s 215 am, and I’m up.

This past week has been rough. I spend a night in the ER due to abdominal and chest pain. As usual, nothing much came of it. The doctors are so unfamiliar with EDS that they don’t really know where to begin. I ended up having an ultrasound today, to check my gallbladder. We’ll see what that turns up.

Right now I’m unable to sleep, I’m nauseated, and I’m tired. It is so not fun. But I bet you could have guessed that already.

This is one of those times when I am so down about this whole mess that it tears me up. While I normally try to have an upbeat view of things, sometimes I just hit a rough patch and can’t. Right now I am just so sick and tired of being sick and tired, that I just can’t stand it.

There is nothing more precious than one’s health. Sometimes you don’t realize that until it’s changed forever.

I finally got out of the house today, and spent some time with my husband. We got a little Christmas shopping done too. I had a great day, mostly because I got to be with my husband, who’s often on the road with the Army. However I was more than a little bothered by how much trouble I had keeping up a normal pace. I just tire so easily, and the pain starts to get to me.

So now it’s 230 in the morning, and I’m still up…which means I’ll be exhausted all day tomorrow. One thing that isn’t negotiable…I need my sleep. But it appears I am not going to get it.

Posted by: kherome | December 15, 2009

When people judge you based on your condition…

Having a condition of some sort is never fun. It presents so many difficulties, many of which people can’t outwardly see. Often, I am so exhausted that I feel like I could fall asleep standing up, as long as I can lean on the nearest steady object. No one can “see” how tired I am. What they can see is that I didn’t vacuum the carpet or do the dishes. Or that there is a basket of laundry waiting for attention. My dilema is this; I can either bore them to tears by explaining to them how exhausted my condition makes me, thereby making simple household chores difficult to impossible…or I can just quietly accept that they’ll probably judge me as a terrible housekeeper and think to themselves that I need to get my lazy butt going on cleaning up. Frankly either way I lose. If I try to explain my condition, chances are good that they’ll be unable to understand something they can’t experience, or they’ll think I am exaggerating and looking for sympathy.

As of now I think I do a  pretty fair job of forcing “normalcy.” I have a job, and I work hideous, rotating 12 hour shifts. That’s tough on “normal” folks. It’s hellish on a person with EDS and it’s evil little sidekicks. Currently I have, but do not use, prescription pain medications. There are days when I desperately want to take the medications prescribed to me, because the pain gets so intense that I am often nauseated by it. However, I feel that the longer I can resist becoming dependent on the meds, the better. I’m loath to depend on anything other than myself.

One of the most frustrating things is when people tell you that they “know how you feel.” I understand that they are trying to be agreeable and probably think they are being companionable and friendly by saying such. However, the way you feel when you’ve had a hard day and are tired is not the way I feel when I’m having a rough day. A normal, healthy person after a rough day is nothing like a person with a chronic pain condition who’s had a rough day. They simply do not compare. For example; if I say to someone that my back and hips are really hurting me, I usually get this sort of response…”Oh I know what you mean! Last week I tweeked my back lifting some boxes and I had to take advil and use my heating pad for three days to get over it!.” Obviously this is an acute injury, painful perhaps but fleeting, with recovery expected in a reasonably short time. For me, I suffer from degenerative disc disease, and SI instability that results in my back constantly sliding in and out of alignment, and my hips riding in and out of their sockets. This is the result of my condition, with no recovery expected. This is not a pulled or strained muscle. This is a chronic, painful condition that results in me walking around feeling as though someone is trying to pry my joints apart with a red hot fire poker. Advil and a hot pad don’t being to solve the issue. Thats not to say that I don’t feel for you in your pain. I do, very much. But  please try to understand that I spend almost all of my days in pain, and my daily level of pain is usually higher than people could ever guess.

That leads me to one more thing…I don’t walk around mopey, drawn, and sullen. I may feel like crap, but I choose to try to keep a pleasent disposition. Most people have no idea that I’m hurting, or nauseated, or exhausted when they see me. For the most part I fit right in with everyone else on an external level. I make this choice. I choose to make myself act normally, and try to be upbeat. No one wants to hang around with a downer. No one wants to listen to a person complain and moan on a daily basis. Its the same situation that makes people loath to visit those in the hospital or nursing home. No one likes those situations. So please understand that I choose to be outwardly happy, and engaged. But please don’t say things like “You must be feeling better!” or “Your condition has really improved!” I am probably NOT feeling better, and my condition does not improve by it’s nature. My condition will not go away. It is genetic, a flaw right down into the very DNA of my body. It doesn’t disappear, and it bothers me everyday. But I don’t have to let it control me and drag me down. I can choose to do my best to put myself out there, be happy and enjoy my  life. That doesn’t mean I can do that everyday, but most days I do it pretty well.

Posted by: kherome | December 10, 2009

Winter and EDS

Winter time used to be one of my favorite things. I loved snow, I loved sledding, I loved the cold quiet of winter mornings. Fresh unmolested snow is so peaceful.

But now, as an adult, and diagnosed with EDS 3, winter is a different animal. Now I dread it because the cold makes my joints hurt more, slips and falls happen more often, and it just generally makes me suffer. Believe it or not, I have developed an allergy to the cold. Yes, you read that right, you can be allergic to cold weather. I get what is called “cold urticaria.” This means my face rashes up into an itchy red mess when I get cold. Usually wind is what brings it on the worst. As soon as I get warm again it starts going away, but in the meantime it’s hideous.

These days I worry more about the potential for slips and falls. My joints are less sturdy now than ever before and a fall surely means a dislocation or possibly even a break. It absolutely means bruises and pain from jarring my poor, loose skeletal system.

Yesterday we got a grand total of 14.5 inches of snow. I live in a rural area, and it drifted badly. My wonderful husband was called up for Military duty for the snow emergency, so I am stuck indoors. I need to get out there and plow the driveway, but I’m dreading the bitter freezing cold. Unfortunately our plow is on our ATV, so it’s not like I get to sit in a warm truck to plow. I’m starting to wonder if we could find a cheap, cruddy truck that could be turned into our winter plow machine…hmm…

While I still enjoy a peek outside in the early morning or evening light, to watch the snow fall…I can see now why some people migrate to less snow friendly environs.

Posted by: kherome | December 9, 2009

My first posting

This is my very first blog post, made while I am sitting on the couch looking out my window at the fresh 13 inches of snow we got buried in last night. Ah, Wisconsin winter…

The intent of this blog is to chronicle the ups and downs of trying to live as normal a life as possible while affected with Ehlers Danlos Syndrome, or EDS.

From the National Institute of Health:

Ehlers-Danlos syndrome (EDS), hypermobility type:  The skin is often soft or velvety and may be mildly hyperextensible. Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations or advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common.

Chronic pain, distinct from that associated with acute dislocations or advanced osteoarthritis, is a serious complication of the condition and can be both physically and psychosocially disabling. It is variable in age of onset (as early as adolescence or as late as the fifth or sixth decade), number of sites, duration, quality, severity, and response to therapy. The severity is typically greater than expected based on physical and radiologic examination, and fatigue and sleep disturbance are frequently associated. Affected individuals are often diagnosed with chronic fatigue syndrome, fibromyalgia, depression, hypochondriasis, and/or malingering prior to recognition of joint laxity and establishment of the correct underlying diagnosis. At least two recognizable pain syndromes are likely:

  • Pain or myofascial pain, localized around or between joints, often described as aching, throbbing, or stiff in quality, may be attributable to myofascial spasm, and palpable spasm with tender points (consistent with fibromyalgia) is often demonstrable, especially in the paravertebral musculature. Myofascial release often provides temporary relief.
  • Neuropathic pain, variably described as electrical, burning, shooting, numb, tingling, or hot or cold discomfort, may occur in a radicular or peripheral nerve distribution or may appear to localize to an area surrounding one or more joints. Nerve conduction studies are usually non-diagnostic. Skin biopsy may reveal reduction or absence of small nerve fibers.

One hypothesis is that painful myofascial spasm occurs in response to chronic joint instability, with neuropathic pain resulting from direct nerve impingement (e.g., by subluxed vertebrae, herniated discs, vertebral osteoarthritis, or peripheral joint subluxations), and/or from mild-to-moderate nerve compression within spasmed connective tissues.

Headaches, especially migraine, are common, caused at least in part by cervical muscle tension and temporomandibular dysfunction.

Hematologic.  Easy bruising is quite common, frequently without obvious cause. Mildly prolonged bleeding, epistaxis, and menometrorrhagia may also occur. Clinically, this mimics von Willebrand disease, but von Willebrand factor, platelet number and function, and coagulation factor studies are almost always normal. It is, however, possible for von Willebrand disease, idiophathic thrombocytopenia purpura, or other hemorrhagic conditions to be present independent of EDS.

Gastrointestinal.  Functional bowel disorders are common and underrecognized, affecting up to 50% of individuals with EDS, hypermobility and classic types.

Gastroesophageal reflux and gastritis may be symptomatic despite maximal doses of proton pump inhibitors with additional H2-blockers and acid-neutralizing medications.

Early satiety and delayed gastric emptying may occur and may be exacerbated by opioid (and other) medications.

Irritable bowel syndrome may manifest with diarrhea and/or constipation, associated with abdominal cramping and rectal mucus.

Cardiovascular

  • Autonomic dysfunction.   Approximately one-third to one-half of individuals with EDS, hypermobility (and classic) type report atypical chest pain, palpitations at rest or on exertion, and/or orthostatic intolerance. Holter monitoring usually shows normal sinus rhythm, but sometimes reveals premature atrial complexes or paroxysmal supraventricular tachycardia. Tilt table testing may reveal neurally mediated hypotension (NMH) and/or postural orthostatic tachycardia syndrome (POTS).
  • Aortic root dilatation, usually of a mild degree, occurs in one-quarter to one-third of individuals with EDS, classic and hypermobility types. The severity appears to be much less than occurs in Marfan syndrome, and there is no increased risk of aortic dissection in the absence of significant dilatation. The long-term stability or progression and ultimate prognosis are not yet known.
  • Mitral valve prolapse (MVP) was previously considered a manifestation of all types of EDS, but this has not been confirmed in rigorous evaluations using modern diagnostic criteria for MVP. It is possible that mild MVP not meeting diagnostic criteria (and therefore not requiring special monitoring or treatment) may also explain some of the atypical chest pain and palpitations.

Oral/dental.  High, narrow palate and dental crowding are nonspecific features of most heritable disorders of connective tissue.

Periodontal disease (friability, gingivitis, gum recession) occurs in some individuals with EDS  and is no longer considered a unique subtype of EDS. The frequency of periodontal manifestations in the hypermobility type is undetermined. 

Temporomandibular dysfunction (“TMJ syndrome”) is relatively common and can be thought of as a specific example of joint degeneration and osteoarthritis.

Obstetric/gynecologic.  Pregnancy may be complicated by premature rupture of membranes or rapid labor and delivery (less than four hours), but this is less likely than in the classic type. Joint laxity and pain typically increase throughout gestation, especially in the third trimester. No other complications are associated with pregnancy.

Pelvic prolapse and dyspareunia occur at increased frequency in at least the classic and hypermobility types of EDS .

Psychiatric.  Depression is a common complication among all individuals with chronic pain, including those with EDS.

« Newer Posts

Categories