A day in the life of a chronically ill mother

I woke up around 3am with IBS symptom, pain and sweaty hands and feet.   I lay there for a minute assessing the situation;  experience has thought me that it is better to get up and move about, get a glass of water and lay flat on our living room floor to stretch out my back and to relieve some of the pain.

After I calm down, I sit on our sofa and start reading stuff on the internet.   An hour later the pain has subsided a bit and my belly has calmed a bit so I decide to go back to sleep.   So I slowly go up the stairs trying not to wake up my little girl and husband.  No matter how quite I am DH is a light sleeper and always wakes up.  He opens his eyes looks at me and goes right back to sleep.  I curl up against toddler (she sleeps with us) and I drift off.  

The alarm set for 7:30 am.  I hear it and I jump and shut it off.    Usually I just let it go on so it wakes up toddler.  Since I lost an hour I needed to sleep in.    When we finally wake up it is 9 am, I have the same pain but with less intensity.   For a minute my mind goes to a place I don't want it to be, Oh GOD please don't let me die; not good, not good at all and overly dramatic.   I wake up toddler and we cuddle for a bit before washing up and heading downstairs.    I note that I have a stress headache and I am also more anxious than usual.  I brush it off and go about my business.  I make fried egg, toast with peanut butter and apple slices for toddler MH breakfast.

I take my thyroid med and start cleaning up the living room.   The house it too quite.  I rarely remember to put on music but I needed something to occupy my mind away from the pain.  I go through our old cd collection and put on a boys II men CD.  Haven't heard their music in ages.

I haven't mopped my floor for a week.  Hard wood floor is forgiving but I just couldn't let it be today, I have put it off for the last three days.   I sweep and mop the floor and I feel better for at least accomplishing something.   The dishwasher needs to be emptied but I put it off for later.  I make myself omelet for breakfast with leftover baked potatoes from the night before. I make tea, print some work sheets for toddler to scribble on.    I have her sit on her high chair.  We are on letter F.  F for frog, F for foot etc.  She draws and I am happy that she actually now colors the letters instead of just scribbling aimlessly all over the paper.    This occupies her for some time and I am a happy camper and read some blogs, news and check my e-mail.   I was reading a blog post by 'Peace of Christ' and enjoyed her blog post chronicling her day so I decided I would do the same so the reason for this post.

Toddler had enough with drawing so we go out on our deck and it actually feels good.  Not too cold and the sun is finally out.  I crank up the music and start dancing with toddler.  I am one of those people who like to dance in private :).  She loves it, but she loves it more when I hold her and we dance.  My back is not up to that task especially after mopping so I distract her and we play with a pile of leaves on our deck.    I was wondering where my Mom and Dad were, they said they were coming but didn't say the time.  I am actually excited to have company, it is also an early day for DH so he will be coming home at 5.    Tuesdays are nice.

My mom and dad finally show up and they said they already had lunch and all they want is coffee.  Toddler is happy to see her grandparents and my dad is overly excited to see her.  He says "give me my medicine" and she runs to put her hands on his forehead and rub it:).  They play this game every time he sees her.   I start on lunch for toddler and I.   I give her a slice of cheese followed by pasta with no sauce and a banana.  For lunch I have left over chicken, cucumber salad, beets & potatoes that my mom brought.   A small glass of coffee after lunch always puts a smile on my face.  I empty the dishwasher and clean up after lunch. 

My dad leaves and mom is staying the night to help cook for a get together my father has planned with his friends which I agreed to host on Sunday.    I give toddler milk before her nap.  After she finish she gets up and runs around, she doesn't want to nap since we woke up 1.5h later than our usual time.  DH calls and says he is on his way home.  It is now 4:30 pm and he shows up a little earlier than expected.   Stir fry beef with tomato salad served on injera is usually on the menu for Tuesdays.  DH picks up the beef and injera after work.   He decided to head to the gym while I struggle to put toddler to nap.  She is upset over something but she is just tired.   I lay with her on our sofa and she finally drifts off.    I quickly cook dinner which took me about an hour and we head out to the grocery store with my mom to get stuffy for the party while DH eats dinner and toddler naps.    We decide to go to Shoppers since I have $10 coupon.  I love these coupons.

For dinner I warm up some left over veggies and pasta for mom since she is on a fast (no meat).    I make a cheese & chicken sandwich for toddler.   I struggle with her to finish her dinner.  We eat dinner followed by ginger tea with honey.    Toddler is watching TV.   DH is preparing an exam he has to give on Thursday.    We talk more with my mom while I pack up DH's lunch and clean the kitchen.   We decide to call my sister just to check on her even though it is late.  She is going through an ugly divorce.  She has the kids every other week until permanent custody is decided next month.   It is a sad situation. 

My mom goes to bed and DH has finally finished his work so I sit with him and we watch TV for a bit while toddler plays.   Since toddler had a late nap she is not up to sleeping but we call it a night and go upstairs.   DH and toddler read in bed while I take a hot shower, massage my lower back and get ready for bed.    I think I pass out before toddler :)   

This & That

1. Earlier last week I was feeling really crappy.  I woke up one day and just felt irritated and depressed.  Being on cd 12 or so I was baffled.   I was mopping around for a few days and full of anxiety for no reason and bam, I started spotting on cd15 and the anxiety and depression lifted.  The next day AF was here.  Yes I had a 15 day cycle, I should have suspected this since I only had fertile CM right after AF for only two days.  Welcome premenopause or what ever this is.   My last few cycles were long like lasting 40 days.   I think my body is trying to reset after the HCG injection a few months ago but it could also be this is my new normal.   When I took estrogen pre-ovulatory in the spring the same thing happened.  I had a couple of long cycles  and a 16 day cycle followed by two text book 28 day cycles.  Then I took the HCG injection and things haven't been the same ever since.  Lets just hope that things will reset and I will be back to regular cycles.  

2.  I have been thinking about what options I have medically in dealing with the  endometriosis pain.  Premenopause could last years so I need to look at my options now that having another child looks out of reach.   Hysterectomy is not a good option for me since the endometriosis pain is localized outside of the uterus.   I don't have a lot of bleeding or intolerable premenstrual cramps.  What makes my life hell is the pain especially during the ovulatory phase.  I don't think I want a complete hysterectomy, I think removing my ovaries at this point is a no no.   So my options are limited.  My pain level is gradually getting better since I am off estrogen.  I am trying to clean up my diet as much as possible and see if that makes a difference.

3.  Most days I am OK with not having another child but some days it hurts.   When I got pregnant last summer I was hoping for a girl because I wanted my little girl to have a sister.  But recently I have dreams that I am holding a baby boy or when I see a baby boy I have this weird feelings.   I don't know where this is coming from.

4.  This weekend I did not do so good with keeping up with the anti-inflammatory paleo diet.   We went to California kitchen and DH pointed to the option of gluten free pizza and I just had to have it.   Well the curst tested like cardboard and couldn't eat much of it after the 2nd slice.    I also consumed sugar in my coffee and cream.   I have been doing so good with adding extra veggies.  I am not into raw vegetables so may be I will share a few of the simple recipes I use for veggie dishes.

5.  I rarely get colds or flu.  Like may be a cold every two years.  Last time I had a flu is back in 2005 I think.   So I was talking to my cousin who always gets what ever is going around and she takes care  of herself more than anyone I know.  I was telling her that for whatever reason I rarely get colds.  That afternoon I felt kind of off and my throat felt scratch.  Next morning I woke up with a cold.  So I took it easy for a day and by the next afternoon I was feeling like myself.  I better  not say this thing out loud.  I have enough sickness as is, don't want to add to my misery.

Update

1. The new diet where I am eliminating legumes and most grains (except teff & white rice) has been going Ok.  Partly a failure I guess, I just couldn't take myself off sugar in my coffee.  So right now I have a teaspoon of honey with tea in the morning and a teaspoon of sugar with coffee in the afternoon.  In addition, I was only able to give up crème in my coffee for like a day.  I guess I can manage drinking dark coffee when I am at home but I just don't like store bought coffee test without the cream.  One thing I did well with is eating more veggies.   I have included veggies at ever meal including breakfast and I am loving it.  Usually I always have something green for lunch and dinner but breakfast was lacking.  I also try to make two-three vegetable dishes a day so that we get variety.  On Friday we went to Trader Joe's and bought all kind of veggies that would last at least a week.  I also cut down rice portions by half.  The aim for this week is to look into baking with almond floor so I can slowly back away from rice.  The other day I was going to buy it from a local organic place but a small bag of it costs $10.  I figured I can get it somewhere else for cheaper.

2.  Toddler MH turned three two weeks ago.  We had a small party for her at home.   The girl still has no interest in eating cake or for that matter a lot of other things.  I am attempting to have a structured time where she can sit and do some preschool.   She knows all her letters, colors, shapes and can count to 20.   She also knows most of the Amharic letters.  Since she was two she has been watching Amharic learning videos and that helps a lot.  I am struggling with teaching in two languages.   I am thinking that mornings will be reserved for learning in English and may be 30 min in the afternoon we can learn some Amharic.   It is really hard to teach a 2nd language.  Mostly we talk to her in Amharic but since she watches some TV she has a tendency to only talk in English.   She does understand Amharic but she is just not at a point where she can talk with the exception of a few words here and there.   For us it is very important that we teach her Amharic, it is just part of teaching her about her culture.  I often see grown kids complaining that their parents did not take the time to teach them about their culture and language. 

3.  I am reserved about posting pictures of my little girl.  DH doesn't know I have a blog.  Yes it is been four years and he doesn't know I have one.  At the beginning I didn't tell him because I think I thought he would find the idea too weird, especially with something so private as infertility.  I had planned to tell him if I stuck with it but then it is nice to have something so private.   He knows I read blogs, mainly blogs with infertility. 

4.  Around this time of the year I always struggle.  I hate winter.  I love fall but it just reminds me of winter and I get depressed.   I noticed that I am visibly down on cloudy cold days.  The summer has been fun with sitting out on our deck sun bathing while toddler played with her water table.    I have not taken vitamin D in a few months.  My Dr. said the one thing she want me not to stop taking is vitamin D.  But I don't do well on it.   I just can't pinpoint the exact issue I have with it but every time I want to take it my gut says no.   I take prenatal everyday which has a low vitamin D dose.    I will be seeing my Doc in Nov and will see where my levels fall.

5. On TTC front I am on cd12.  For the last few months I have had 40 day cycles.  So unheard of for me with out any meds.  If anything my cycles were short before my 2nd surgery.    This happened after a cycle on HCG.   So right now I am on no meds.  I am done with meds for now.   I am drinking red raspberry tea everyday and taking pycnogenol.  After the HCG cycle I had no CM the entire month so I tried Red Clover tea for one cycle.  It worked wonders with the CM but my period went back to being 2 days of spotting and nothing else.  So I have dropped the Red Clover tea and we will see what this cycle looks like.   A few days ago I had some fertile CM which disappeared and today I am on cd12.  I guess it is going to be another 40 day cycle.

6. In the summer we had a lot of family activities to the point of seeing the large extended family for three weekends straight.   This past weekend it was nice to not have to be somewhere.   We had a slow weekend where we went out for coffee, to the mall, playground and just sitting at home with my hubby.   The next few weekends I am going to make sure we go out and enjoy what is left of the relatively warm weather.  Hope everyone reading is doing well.


 

Day 1 on Anti-Inflammatory/Paleo Diet

I have been gluten free for six years and that has helped a lot with inflammation, IBS and endometriosis.  However I still do have some issues with some foods.  

I am not fond of diets.   The word "diet" for me is obsessing on weight loss, being hungry and deprivation and I want none of it.  

I have been reading about Paleo diet and inflammation  for a while and wanted to try it but the hard rules kind of turned me off.   I am not willing to go completely grain free.  Since I have been dealing with inflammation for a while I kind of have some idea on what food makes me ill.  

I don't drink soda or alcohol.  I also gradually gave up oatmeal, corn and beans over the past few months.   I had some beans/corn the other day because they were noting cooked in the house and I was feeling lazy.  I have been paying for that mistake over the last few days. 

So here are the foods that I already avoid: gluten, corn, beans, chickpeas, lentils, oatmeal

The foods I know I need to avoid based on my reaction after I consume it: diary, sugar, sometimes coffee but I think it is due to the cream and not coffee it self.  But it does disturbs my sleep sometimes but I am not willing to part with coffee :). 

Being Ethiopian lunch and dinner often involves injera made of teff grain.      This is the one thing I am not willing to give up.  I also haven't noticed any reaction to teff when it is fermented.    I also am not willing to part with rice right now but will try to eat less of it.

So the foods that I will give up in addition to the ones I already avoid: sugar, diary

I am allowing myself a teaspoon of honey with my morning tea. Since I avoid most foods that I have issues with this diet will focus on consuming more vegetables and fish.   I will also focus on more soups and easily digestible meals.   

Today's breakfast: a cup of acorn squash soup, a small avocado with lemon and green tea with honey. 

This weekend I will spend time planning all meals.   Wish me luck. 

Love of Coffee

I just put down toddler for a nap.   Yep, at 5:30pm, we have been having issues with sleep but that is all our fault for not having her on a consistent schedule.  Any how that is for another day of blogging. 

So I am sitting here and decided to have a cup of coffee (small cup) even though I know it is going to disturb my sleep. 

Coffee has so much meaning in our culture.  It is a social event and it brings so many memories of home.   Although I love the traditional Ethiopian ceremony I was never a coffee drinker (ceremony picture below).   But this was not by choice, I avoided coffee for the longest time due to heart palpation I had since high school and was told that coffee would aggravate it.  So I become a tea drinker.   I would only drink coffee when I visited family over the weekends but never consumed on a daily bases.  The smell of coffee is addictive enough that at work I was adamant not to give in to all the flavored coffee.  That lasted for years but they I got pregnant with toddler in 2011 and it all changed.   I so craved coffee that even before my lunch I would day dream about the half a cup of coffee I allowed my self during my pregnancy.   Since I couldn't have gluten, coffee was the one thing I could indulge in.    Since then I haven't been able to give it up.   On days I wake up in the middle of the night due to caffeine I vowed to myself that it would be the last time I drank coffee but then morning comes and everything changes.  

It was not too difficult for me to give up gluten but coffee is a different beast.    I also sometimes would feel guilty that my one cup a day might be contributing to my infertility.    But I only drink one cup a day after lunch and on occasion I would drink in the morning if my mom is around.   Coffee has become a symbol for all the glutinous treats I can't have so to heck with fertility, heart palpitation and sleeplessness.  I am just not ready to give up my one cup of coffee.   After all I am from the birth place of coffee :).  

Managing chores with Chronic Pain

The pain, hormonal states & fatigue associated with endometriosis is often unpredictable.  Some days my pain is minimal and the next day I am barely making it through the day.  I left my job two years ago since I needed time off and also wanted to focus on my child and health.  Pregnancy was a blessing, the pain was gone, the hormonal instability were gone and replaced with joy but once I had my baby girl the pain slowly but surly has returned.   It is not as bad as pre-surgery but could get up there easily.   I have finally accepted that this is my reality.  At some point I had such high hopes that surgery was going to take me out of my misery and that the endometriosis will never come back.  When that didn't happen I was hopeful that after pregnancy that it would not return.  Well, that is not my reality either.  I am learning slowly to accept that this is my normal.  Right now I have accepted that in my current state there is no way that I could work and raise a child.  It would just be too much for my fragile health and I would be sacrificing my home life.  Before kids working was manageable, at times barely manageable. At the end of most days I would come from work and crash.  I can't do that with a child. 

I do things to reduce the pain but there is always going to be some sort of pain and hormonal instability.  With the acceptance I have been able to not fight the pain but work with it and try to deal with my day to day activity as best as I can without tasking my body too much.   Here are some ways I get stuff done around the house.

1. Cleaning:  While toddler eats breakfast I usually spend about 45min cleaning my living room and unloading the dishwasher.  I sweep the floor, mop if necessary and straighten up.   No I can not designated hours for a task such as cleaning, or cooking for a party or any thing that involves physical activity.   If I clean for a whole day I need a couple of days to recovery.  Instead, the different cleaning tasks are spread through out the week.  I usually clean the master bedroom bathroom toilet right before I take a shower and also clean the shower while I am in there.  The sinks might get done when I brash my teeth on a different day.  Never both at ones unless I have extra energy at the end of the day.  My husband usually mops the bathroom floors after toddler takes a bath.  The kitchen gets cleaned while I am cooking, that is if I am not in too much pain.  On the days that I don't cook, I would clean the stove, fridge or the other bathrooms.   The house is clean enough but not spotless clean but I am Ok with it.  

2. Cooking: I cook every other day.  Since it would be too physically tasking for me to do too much in a day, I use the days I don't cook for cleaning, laundry or to sit on my sofa and watch TV or read.  Usually, I mop the floors on non-cook days and do laundry, wash my hair or what ever else needs to be done.   Non cooking days are essential, it gives me time to recovery from the previous days of activities. 

3.  Laundry: It is random.  DH takes care of his own.  I do bedding and toddlers and my cloth.  I usually put a load when I take toddler to the basement for play.   It usually sits in the basket for days to be folded. 

4.  Groceries: all groceries are done with my husband.  We usually go on weekends and anything we need during the week my husband would stop by after work.  I really don't have the energy to go grocery shopping with a toddler.  It would just wipe me out for a day.   When my mom was with us I did the grocery shopping. 

5. Toddler's hair: yes it is a chore.  Her hair is very curl and takes a while to detangle.  It would take me about 1.5 hours to detangle and braid her hair.   This gets accomplished on non cook days and usually after breakfast.   DH gives her a bath, that tasks is just too strenuous on my back specially if her hair needs washing.  He has been doing it since she was born.  I give her a bath when necessary during the day but there will not be any hair washing.

6.  I know there are people in worst shape that me.   It is finally sinking in that this is how my life is going to be and I have to adapt and find ways to make it work.   I use to see it as a temporary situation and I am going to get better somehow but that is not the case.   It doesn't mean that I am not looking for ways to improve my health but as we all know there is no cure for endometriosis.   I am very thankful for what I can do in spite of the pain. 

Update & Crazy Hair

1.  I just put toddler for a nap and came up to our office so I can give an old coworker a recommendation.   Its amazing how much one forgets in two years.  I had to go back and review some stuff so I can talk in details about her experience.   It kind of made me miss work but oh well.   The coworker will be layed off from her job in a couple of months and she just found out she is pregnant so she wants to get a new job as soon as possible.   I talked to her about a few months ago and she told me that they are TTC.   And then today while we were texting each other about the job she applied for she came out and said that she is 7 wks along and you know my infertile self went to oh my God, she probably tried for 2 months and just got pregnant.  That jealous feeling started raring its head and I had to stop myself and say I am glad she doesn't have to experience the pain of infertility.  And then she texted and said it took 7 months for them to get pregnant and that made me feel a little better.  I real don't like these feelings.

2. On reproductive front I started taking Pycnogenol about three weeks ago.   They say it will take months to see the effect but I had no spotting or brown bleeding prior to AF this cycle.  How cool is that, it just showed up.  The cramps have also been tolerable and I haven't taken Advil since it started yesterday.  In addition I only had faint cramps two days prior to AF.   The flow is also normalizing and it is not scanty anymore.  For the last few months ever months the flow has increased some and no clots.   It seems that the red raspberry leaf tea has helped a lot.  It has been at least three months since I started drinking it.  I am going to add promegnant juice to my daily regim.  I am so done with taking meds.   My LP has lengthen on red raspberry leaf tea alone and we shall see how the next couple of cycles look like.   I am hoping that the Pycnogenol will help with the endo pain.  We shall see. 

3.  DH just started the fall semester.  He only had a couple of days of break but he has been off every afternoon in the summer so its not too bad.  His fall schedule is kind of crazy and he will be teaching two nights so we won't see him until 10 pm on those days.   It is going to be hard on both toddler and I.  We have been spoiled over the summer.  My mom is no longer with us.  She is now living temporarily with my sister who is in the process of an ugly divorce and needs my moms support.   So it will just be toddler and I all day. 

4. We were thinking of putting toddler in daycare for two days a week so she is exposed to other kids.  There is a daycare at DH's work but we can not justify that cost just yet.  She will be going in the spring, by then we should be Ok finically to be able to justify that spending and I am also counting on our tax return.

5. I will leave you with a picture of toddler and her hair :)  Love her curls, it takes a while to moisturize and braid.