Jinx

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The previous post must have jinxed me.

I woke up this morning feeling as if a Mack truck plowed me over during the night.  Although this sensation isn’t new, I have had it for nearly 7 years, it was more intense today than it had been all week.

I blame the exercise.  Or the lack of fibro medication in my system.  Or a combination of both.

Needless to say, it was one of those “bed” days.  And I had to take pain medication.  I hate taking pain medication.

The sensation that I know with certainty is  fibro related is the severe, local “vibrations” of pain throughout my tissues when I collide with some object by accident.  So far today it has been the door frame, the lower left hand corner of the freezer, and the corner of a table.  The pain is enough to make me gasp, and it continues to resonate for the next few minutes.  I usually curse.

While I was on Lyrica, these types of sensations were minimized.  But lately it is as if my nerves are on high alert, and any type of mildly uncomfortable contact is greatly exaggerated.

I did do some stretching, and that seemed to relieve some of the discomfort and heaviness in my legs.  I also had an encore of RLS.  Lovely.

I’ll give it another try tomorrow.  After a *hopefully* good night’s rest, I plan to hit the gym.  But perhaps I’ll tone down the workout a little.  Shorten the time or intensity.  And I am fortunate that I have the flexibility in my schedule to do two or three small exercise sessions in comparison to a prolonged session.

And I need my Lyrica!!

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The balancing act

© Solva | Stock Free Images & Dreamstime Stock Photos

© Solva | Stock Free Images & Dreamstime Stock Photos

Ahhh…the great balancing act. When you have a chronic illness, you have to accept a few things (well, a lot of things, actually). But one of them is that you are not “normal”. Your body does not work the way it used to, or the way it is supposed to. Things that other people can do without consequence, you cannot.

This is the dilemma I am struggling with today. I am feeling great today. A little tired as usual, the usual pain. But I don’t feel sick today.

I woke up, went to the bank, went to get my car inspected (finally) and then came home.

I rested for about an hour. I shoved some laundry in the washer. And then I went to the gym.

I did 10 minutes of stretching and 30 minutes of the stationary bike. At a brisk pace.

I wanted to do more. I felt I could do more. But I had to keep in mind that “I’m not normal” and that the usual muscle soreness and fatigue usually experienced after exercising is probably ten times worse in my body. I had to have a serious talk with myself to not “over do” it.

It goes something like this:

“You can do it. You have already done 30 minutes. What is another 30?”

“Hello? You have fibromyalgia and an autoimmune disease. And you have been sedentary for six months. You will pull a muscle or be unable to walk for the rest of the day. Be smart and stop at 30 minutes”

“But if I go a full hour, I can burn more calories and melt some of this steroid fat off my stomach (and thighs, and ass).”

“That won’t help you if you are stuck in the house for the next few days because you can’t walk. And remember there are Girl Scout cookies everywhere. The more you are out of the house, the less temptation you will have to devour $144 worth of cookies”

“But thin mints are sooooo good”.

“Oh yes they are, but they are a source of calories that really isn’t good for you right now”.

“But if I exercise more, I can eat more cookies”

“OMG. You are trying to LOSE weight. Not maintain the weight you have. DO NOT GORGE ON THE COOKIES!!”

“Grrr…I guess you are right. I’ll stop now”

Good thing the gym at my apartment complex is hardly used. I am usually in there by myself. No one has to witness my schizophrenic self talk.

I know I can’t change things overnight. I know that it will take time. That I have to build my endurance. I have to remember that exercise is different for me now due to the meds, due to the weight.

I know all of this, but it still is hard.

So I will watch myself. Watch the diet. I am using a free app on the kindle to track things. The numbers help, but the problem there is being entirely honest about what I eat. I was honest in the last two entries, so hopefully seeing the numbers over time will sink in.

Now to fight my urge to get into those thin mints….

New meds

I’m writing a short post today because it’s a med day. When I started this blog, the intention was to share my experience with this rare diseases. At the time, I didn’t have a clear cut diagnosis, and it is still unknown if the pars planitis is due to sarcoid or idiopathic. 

At the time I was just starting on methotrexate and I couldn’t find any “real world” info on it. Sure, I can read the dry monographs provided by the pharmacy, but no first hand accounts on what it is like to take this medication on a weekly basis.

It has been nearly six months since initiating the methotrexate.

It is working, but not as well as the docs would like. And my body doesn’t tolerate increasing the dosage. I remain at 10 mg, administered via injection every week.

The past few weeks or has been hitting hard.

But this week, after a round of appointments, I was put on leucovoran .  It is basically megadose of folic acid.  The methotrexate depletes the folic acid in the body, resulting in the side effects like leaded limbs, nausea and fatigue.  By replacing this substance, it is thought that the damage caused by the methotrexate can be minimized.

And day 1 after my weekly dosage of methotrexate, I can say it appears to be working.

My limbs don’t feel as heavy. It’s like the lead blanket has been replaced with a lead sheet. Although I’m experiencing more nausea, the over all fog effect is reduced. I can move around more freely.

If it wasn’t for the allergy attack that is killing my sinuses, I  would think that I could do more on this day 1 than I have been.

I still can’t leave the house on these days (unless it is going to another house where I can lay down), but I am more engaged with the household. I was able to make Sunshine’ s lunch today.

For those tiny improvements, I am grateful.

Amazing Sunshine

freeimage-3227853Sunshine has been on a roll.

Wednesday she was named “Daisy of the week” for her good behavior at her Daisy meeting.

Thursday she took 2nd place in the science fair (I guess the judges noted that she did the vast majority of it by herself).

Friday she was named “Brilliant Brave”, which is basically a “student of the week” thing.

I am so proud of my little dynamo.

She is learning that her hard work does pay off.  That good behavior yields positive results.

And the best thing?  When I was talking to her teacher at length during the science fair, she mentioned something that Sunshine said this week.  Her teacher knows the situation with Sunshine’s dad.  Apparently one day last week Sunshine started talking about him.  She said “my daddy doesn’t call me anymore, but that is his problem.  It has nothing to do with me.  It is not my fault”.

I loved hearing that.  It means that we are getting through to her.  That she understands that it is his problem and most definitely not her.

Where did I get such an intelligent, smart, well-adjusted child?

Sunshine, meet Science

Today is science fair day. It wasn’t required for her grade level, but I wanted to give Sunshine the experience of doing a project to completion and then showcasing it at school. She decided on plants, because she normally sings to her plants anyway.

This is Sunshine's poster board

This is Sunshine’s poster board

So, we bought seeds, dirt and planted two plants in little coffee cups. Sunshine enjoyed singing to one of the plants everyday and leaving the other one in the guest room. I loved it when she came running one day “Mama, they are growing!!”

So now its time to make the poster board. The instructions clearly state that parents “should refrain from overly assisting their children”. So I typed up the info for the board (because her handwriting isn’t always legible right now) and printed letters of the alphabet to color and use to title the sections of her project.  I also used a recommended website to create a lovely graph of her data.

Sunshine did all the coloring, most of the cutting, and most of the gluing (and you can tell).

I take her to school today to drop off the project, and I see rows and rows of damn near professional projects. The one next to her’s looks like it is a college level presentation with glossy xrays of bones, little flaps with tons of information on it. Nary a glue stain or scissor error to be found. The title of the project is made out of wooden letters, painted in bright colors and glued to the board. I felt a little better when I noticed that “BONES” was spelled “BONS”. Just a tiny bit.

The little peek of the other projects revealed a hovercraft, demonstrations on the action of breathing (complete with soda bottle lungs and a balloon diaphragm) and similar projects to Sunshine’s. Only that one was professionally typed and put together. No kid (even in the fifth grade) has handwriting that perfect.

I understand the motives of the other parents to “help” their kids, but what is it teaching them if the parents are doing it?  Sunshine learned the value of starting a project, learning about plants, doing an experiment and exhibiting her findings.  She learned that she can’t quit halfway through, and that Mommy will only help with certain things.  She learned that its hard work to do something like this, but she did it, and now she has a sense of pride.

We will go to the official exhibit tonight to see if she has won anything.  She will get to see everyone else’s projects and we will probably have a discussion about the number of projects that did not look like a six year old did it.  I’ll have to explain to her that sometimes parents help their kids too much, and she did an amazing job because she did it herself.

She is learning a lot of life lessons this week..

Stalled

© Solitaire | Stock Free Images & Dreamstime Stock Photos

© Solitaire | Stock Free Images & Dreamstime Stock Photos

After the rounds of doctors appointments this month, the unanimous verdict is that I’m stalled, if not a little worse.

The inflammation in my left eye isn’t budging, and now the doc sees “old inflammation” in my right eye.  Oh, and the pressure within the left eye is rising.  Fantastic.

The rheumatologist appointment wasn’t much better.  My blood work was slightly raised for inflammation markers.  Only slightly, but they were perfect in November.

The docs are going to put their heads together and decide if I need to go up on the steroids or do something else.

I did talk with the eye doc about the information I have been finding online regarding pars planitis and uveitis.  He knew who the doc that heads the eye clinic in Boston was and seemed to be pretty pleased that I was looking into it.  I made need laser surgery in my eyes if the inflammation does not improve.  Maybe they can throw in LASIK since they are going to be pointing a laser beam into my eye anyway (that is a joke, I’m not a candidate for LASIK.  I asked about it previously and the doc gave me this funny look and said “don’t make this too complicated than it already is).

So I did get new meds this week, a superdose of folic acid to hopefully offset the side effects of the methotrexate, and eye drops to hopefully lower the pressure in the left eye.

I still have the lovely rash, and though it is not as itchy, it is still present.  Rheumatologist states that this is probably related to the steroids (yippee), but if it doesn’t go away after a week of using hydrocortisone cream (fight steroid with more steroid), then I’ll more than likely have to see the dermatologist.  Let’s just add another doc to the mix.

My husband discussed with my eye doc at length about the memory and brain fog issues I’ve been having.  This scares me to death.  I used to be so “on” and organized.  That is what made me such a good hospice nurse.  I could logically prioritize what needed done and when without much effort.  Now, it is a nightmare.  I can’t logically sequence anything anymore.  My husband said my brain used to be “automatic, like a computer”, now I’m not sure if I could win “Are you Smarter than a 5th grader?”  Several times a day I have to remind myself what needs done and in what order.  I practically have to write it down and follow a list.  I have no memory for numbers and names like I used to.  I actually have to make a concerted effort to remember anything.  Even my husband’s phone number.

The doc doesn’t think its related to the actual disease process, but more of a product of stress caused by the disease process.  His suggestion?  Yoga, exercise, relaxation.

I know I need to get moving.  I’m now 40lb overweight and what scared me even more is that I had a spot accucheck done yesterday, 4 hours after my last meal.  It was elevated.  Only slightly, but I usually run right on target (80s).  The glucometer test wasn’t enough to indicate diabetes, but it was enough to have it monitored.

I am terrified of diabetes.  My family has a horrible history with it.  My great-uncle lost both legs as well as a great-aunt (one leg).  My grandpa had diabetes.  So far my dad doesn’t have it, and no one in my generation of the family has it, but I think my shot at getting it (ha ha…shot) is something like 30%.  I need to watch it.  I need to watch my intake and I need to exercise.

But it is so hard.  Carb cravings kill me.  I’m worried that they will up my steroid dose and then the cravings will be more intense.  My husband says “well, just don’t eat it”.  Its not that simple.  I mean, these cravings are intense.  I want cookies, bread, juice.  And Sunshine is selling girl scout cookies, so now I have two cases of delicious cookies tempting me in my living room.

I have never, ever been like this.  No one would ever have mistaken me for a super model, but I was pretty much on par as far as BMI goes.  This “fat” thing horrifies me.  I know I look like a hippo.  Hell, I feel like a hippo.  And I hate the body changes internally, not just externally.  I have increased incidences of gastric reflux, and my systolic blood pressure was 20 points higher than normal yesterday.

It really does suck when you “know too much”.

But, looking at the bright side, I am drinking more water.  I only do the ginger ale thing when I’m nauseous (which is about three times a week right now).  But I am doing better in that department.

I am going to try again tomorrow to get some exercise.  I am completely exhausted from running around all day today.

Tomorrow is a new day with this reality.

The left side of my body hates me

The left side of my body hates me.  My migraines are usually left sided.  I get flares of pain in my left hip and left lower back. My left eye is “worse” than my right, in that the inflammation has not been stamped out in that eye.  And last night I was visited by a syndrome of years passed:  RLS.  And on the left side considerably more than the right.

I have had RLS since the diagnosis of fibromyalgia 7 years ago.  If you don’t know what it is, let me describe it to you.

“RLS” is “restless leg syndrome”.  Yes, it is a real health complaint.  Here is an article about it from PubMed.

When I first encountered this issue, it was awful.  I had this insatiable urge to move my legs.  As soon as I would relax in bed, I would have to start bending and flexing my knees, pointing my toes, stretch those muscles.  Many times I had to get out of bed and pace until my body became so tired, I had to lay down.  It feels like an “electrical sensation” up and down my legs.  Occasionally it feels like bugs crawling.

It is still a mystery to doctors.  The link it with diabetes, peripheral neuropathy, anemia.  For me, I think it is a fibro thing.  My synapses like to be deficient in certain substances and chemicals.  And I have no doubt that this is what is causing this horrible sensation.

When I started on Lyrica 5 years ago, the RLS went away along with the lingering muscle pain.  I was able to sleep through the night.

Due to medical costs, I have been without Lyrica for about a month now.  And apparently it has left my body completely because the dreaded RLS has returned.

I have been getting small glimpses of it the past week, but last night it was horrendous.  I went to bed around midnight.  My left hip was starting to hurt, so I laid on my right side.  Even after taking Benedryl for my rash issue, I was still awake. The sort of awake when you are so damn tired, but your body will not relax.

Closer to 3 am, it wasn’t just in my hip, it was up and down my left leg.  And to a lesser extend in my right leg.  I had to get out of bed.  I started pacing again.  I got down on the floor in the living room and stretched for 30 minutes.  I fell asleep out there, but woke up about an hour later.  Still on the floor.  And I was able to go back to bed and sleep until Sunshine woke me up at 6.

So I am exhausted.  And the RLS is back.  Usually people don’t have symptoms during the day, but since I am less active due to pain and fatigue, I am enduring it right now as I write this while sitting up in bed.  As soon as I end this post, I will be back on the floor again, trying to stretch my hips and legs.

I do see the doctor today, and I hope I remember to bring this up.

I can’t stand it.

Bio Dad

© Squareplum | Stock Free Images & Dreamstime Stock Photos

© Squareplum | Stock Free Images & Dreamstime Stock Photos

I will write this post only once.  It is not a subject that I need to revisit consciously, although I frequently revisit it subconsciously.

I have posted before that my husband is not Sunshine’s biological father.  We split when she was 2, mainly because he “fell out of love with” me when I got sick the first time.  See my post about the issue of chronic illness and marriage here.  As our marriage continued to crumble, I began finding out more and more information that screamed to me “you have to leave, this is not a good situation for you or your child”.

I got on a plane to Texas with my toddler and never looked back.

Its years later, and to this day, I have no regrets.

It is now starting to affect my daughter, however.

After informing Sunshine’s Dad that I was not returning to the area, things got nasty.  Mainly over Sunshine.  He never once attempted to talk me into returning.  He wanted physical custody just to spite me.

After a few months, we did work out a custody agreement.  I began trying to be what I term “a good co-parent”.  I set up a Flickr account so he could see the copious amount of pictures that I take of Sunshine.  I set up a Skype account so he could talk to her “face to face”.  I would call or text any time she did something funny or adorable.  I tried to keep him in her life as much as possible.

So far, she has visited her biological father a total of three times since we left.  For a few days.  His choice.

My second husband has been in my daughter’s life since she was 3.  I have been friends with him since we were teenagers.  I was so concerned about letting another man in her life, but he has been amazing.  He is her dad.  He loves her like she is his own.  There is no difference in the way he treats her in comparison to his son.  And I reciprocate in kind with my bonus son.

Things were going pretty well this year with Sunshine and her “real” dad.  She visited him in the spring (I am tremendously lucky that my mother volunteers to take Sunshine back to Pittsburgh any time she returns to visit her parents).  She met all of her stepsisters (she has three stepsisters and one half sister).  She had a great visit.  We were planning out a second visit in August when he fell off the map.  Completely fell off the map.

It is now six months since I have had any contact with the man.  No texts, no email, no phone calls, no snail mail.  My daughter was physically in his area as planned, and he refused to answer my calls, emails or texts.  And I had to deal with her questions when she returned.  Trying to answer the question “why didn’t Daddy want to see me Mommy?” is something I have been dealing with ever since.

And as the months have rolled on, he has missed her first day of kindergarten, her birthday, and Christmas.  The questions are harder to answer.  She is growing and learning and figuring out the world and her relationship to it.  This situation is getting worse.  It is now affecting her school performance, as I received an email from her teacher this week.  Apparently Sunshine got into an argument at school with a girl in our apartment complex.

It arose from the other girl (who’s parents aren’t together as well) telling Sunshine that HER daddy was keeping her for the weekend.  When talking to Sunshine about this, my heart broke.  Sunshine is never one to make fun of people or to get into arguments, but this really hit home for her. When this other girl was discussing her plans for the weekend with HER “real” Dad, Sunshine got upset and started yelling at her, saying “I don’t like you anymore, I don’t want to be your friend”.  Her teacher was shocked and wrote “I have never heard her say she doesn’t like someone, she is always so friendly”.  Grrr.

My entire family tells her that its not her fault.  That her bio dad has made this decision and it has nothing to do with her.

His cell phone number has been disconnected, as is the one for his wife.  I have sent two snail mail letters via certified mail.  I know the man is alive.  His Facebook has also been updated recently.  I continue to get child support, but I think that is because he is on unemployment and it comes out automatically.

I’m angry.  It was bad enough what he did to me, but to do this to Sunshine?  She doesn’t understand.  She doesn’t know about the ways of adults.  All she knows is that she went up to visit him, and he didn’t want to see her.  And that he hasn’t wanted to talk to her in six months.

It is difficult to talk about anything pertaining to “Pittsburgh” or her being a little baby, because it makes her think of him.  We still have tons of family there, including her great grandparents and her uncle with which she has close relationships.

As much as her bonus daddy bends over backwards to make it clear to her that she is loved, and that she has a Daddy, he just didn’t contribute genetically, she is too young for such sentiments.  I suppose in time she will understand, but the six year old Sunshine repeatedly asks me and her bonus Dad about her bio Dad.  She truly feels that she did something wrong to make him mad and not want to talk to her.

Resolution?  I just want an answer to this behavior.  If he wants to officially sever ties, then I’ll get the paperwork up to him ASAP.  It would be extremely difficult for him to decide now to start their relationship again.  My only hope is that this doesn’t have a lasting effect on Sunshine.  That she learns that blood bonds and behavior bonds are different.  That her bonus Dad loves her and always will.  That words are backed by actions, and the fact that her bonus Dad is there everyday for her means a hell of a lot more than what her bio Dad is currently doing.

My husband sat down with her today and said “I’m sorry that your Dad is being like this.  It is not your fault.  Me and your Mommy love you very much no matter what.  I’m not leaving, I’m not going anywhere”.

Hopefully that sinks in.  I just hate knowing that his (bio Dad) lack of interest is upsetting her.  That she probably thinks about it more than I will ever know.

I know I made the right decision.  I will never regret removing her from a toxic situation.  I have moved her down to a more healthy area of the country.  She is active, smart, thriving.  The schools are better, there is virtually no crime here, and we enjoy a higher standard of living in comparison to where we were living before.  Between her bonus Dad and my Dad, she has significant love and attention from the opposite gender.

However, when these issues arise, I will always feel a blast of anger.  I will always feel helpless to comfort my child.

I have tried to let her know that any feeling she has is ok.  And that it is ok for her to be angry with him.  But it is not ok to get into arguments with other children because their situation is different.

With 50% of all marriages ending in divorce, I know there are resources out there.  I might have to start looking into them if this continues.

Sorry for this rambling post.  I am just so angry right now and writing it down may help.  I just love this child so much and it kills me…literally kills me…to know that he is hurting her like he hurt me.

End of post pertaining to my ex.  He isn’t worth all this time and energy.  I will not post on this subject again except to update it, if that ever happens.

Thank you.

Blog Awards

A blog award!!

Jackie, one of my kindred spirits in invisible illness, nominated me for the Versatile blogger award. It is wonderful to know that people are actually reading what I write. Jackie has also given me several tips on my own health situation and how to survive something like this. Read her blog here

The rules are thus: Pick 15 blogs to award. Then list 7 interesting facts about yourself.  I’m not sure I will quite get to 15 but here goes:

http://scrambled-eggs.org

http://mecfsdreamland.wordpress.com

http://thenervesprick.wordpress.com

http://clotildajamcracker.wordpress.com

http://mamacravings.wordpress.com

Seven interesting facts about myself:

I am a huge huge sports fan.  I might have made a post about this before, but I love sports.  In this order:  Hockey (Pittsburgh Penguins), Football (Steelers), baseball (Phillies).  I even like watching rugby.

My husband and I like rival hockey teams.  He loves the Flyers (for some reason only know to him).  And as mentioned above, I love the Pens.  It gets interesting in our house when they are playing each other.  I feel for the neighbors.

I am crafty.  I made the bouquets for my wedding.

I am a good friend.  I have been friends with my best friend for 22 years now.  We still pick up wherever we left off, even if its a month since we talked.  And she was the only one from my hometown to come to my wedding.

I actually like to cook, now that I have finally learned, and I love making dinner for my husband.

I make awesome cookies.

I love raunchy stand up comedy.  My husband hooked me on this when we got together.

So there you have it!

Under the lead blanket

© Nashekrashe | Stock Free Images & Dreamstime Stock Photos

© Nashekrashe | Stock Free Images & Dreamstime Stock Photos

The meds are hitting hard today. I’m not sure if it is because I’m taking a detox bath every week to help me feel better, but it is really sucking today.

Friday night is when I give myself a shot of methotrexate. I’m only on 10mg, but for some reason I am very drug sensitive to it.

As soon as I inject it, usually into my thighs because of the lovely rash currently encircling my abdomen, I start to feel a heaviness travel down my leg. It’s quick and soon envelopes my entire body. And for the next 24-48 hours I am a walking zombie. I frequently need my husband’s assistance in getting to the bathroom, into bed, etc.

I also experience nausea and sometimes experience dry heaves. Lovely.

Usually the next morning I feel slightly better. But today, it took an effort to even breathe. I almost fell a few times attempting to do things for myself. I hate being helpless as this fog envelopes my mind and my body.

Major effort to even type.

But, this medication is the only one that has stopped the inflammation so far. And not completely, I might add. And I have taken it since August, so this is as good as its gonna get.

I guess I’m not completely to the “acceptance” phase. With the fibro diagnosis 7 years ago, it was more secondary because I was also fighting a deadly infection. I went right from recovering from that infection to being pregnant (which was wonderful for my fibro, and I’m not being sarcastic. I felt fantastic when I was pregnant). And then from being pregnant, to practically being a single mother (despite the fact that I was married to her father). It was easier to accept the fibro because I was so busy caring for another person.

I (obviously) still care for her, but she is potty trained, can feed herself, and sleeps through the night. And most of the week she’s at school. And I have tremendous help from her bonus daddy (real daddy decided to cut her out of his life six months ago).

So I guess that I haven’t fully accepted that, in order to retain my sight, I have to take these meds. I have more time to think about it.

With the fibro it was more of a fatigue/pain thing. I was constantly tired, but I had another little tiny person to take care of. Now I have more time to dwell on what is going on. I’m bored. I can’t work (in the traditional sense).

With this med…it changes so much. I have gained weight, I can rarely exercise (on very good days I can take a 10 minute walk to the mailbox and back).

I’ll feel better by Monday. Hopefully. I’ll be able to participate in the household. But right now, I really can’t do anything but lay down and read.