L: Love

 

I have other plans for “M” so this post goes here.  And since marriage isn’t an equal right *yet*, it is unfair to put this post in that category.

Chronic illness wreaks havoc on one’s love life.  It played a pretty major role in the devastation of my first marriage.  I think I would have eventually figured things out, but my diagnosis definitely helped me see his true colors a lot sooner.  So in that case it was sort of a mixed blessing.

With my second marriage, my husband knew me in all stages.  Pre-illness #1, pre-illness #2 and he has loved me and stood by my side as a friend or lover through all of them.  I remember talking to him on the phone while hospitalized during illness #1 (while married to husband #1).  He was puzzled why my husband at the time wasn’t there talking to me. That should have given me all the answers I needed right then.  Not once during that hospitalization or subsequent ones did he EVER stay more than an hour or two in the hospital.  Including the birth of Sunshine and HER brush with illness when she was three months old.  Some people just don’t do well with those types of situations.  You find out who they are after a life altering diagnosis.

But this isn’t a “bash my ex” session, I have another blog for that.

Relationships are difficult by nature.  Just look at the divorce rate.  Add in the stress when one (or both) parties are sick and that divorce rate can skyrocket.  It happened to me.  I was told after we split “I fell out of love with you when you got sick”.  And that is a direct quote.

I am lucky that a friend who has been by my side FOREVER wanted to be more than a friend.  I was lucky that he accepted my illness that I had at the time and still wanted to marry me even AFTER I got yet another diagnosis.  I was diagnosed with the autoimmune in my eyes literally days before our wedding.

It isn’t always hearts and flowers.  Right now we live with my parents because I couldn’t work for 18 months.  My meds are expensive.  When I was on steroids my mood swings were legendary.  My migraines are horrific.  I gained a tremendous amount of weight on the steroids that I’m still trying to work off and for awhile I resembled Shrek.  Our first year of marriage mainly consisted of doctors visits, eye injections, chemo injections every weekend, nausea and weeping thanks to the dreaded steroids.  We didn’t even go out to dinner for our first anniversary because we couldn’t afford it.

So many times I was terrified he would say “I can’t deal with this bullshit.  I’m gone”.  I even told him right before our wedding that he didn’t have to go through with it. That he deserved to be with someone healthy, that he had a free pass and we could still be friends.  He still married me and he has stayed.  He has been everything I ever wanted in a partner.  He is (mostly) calm, very compassionate, very intelligent and inquisitive about what is going on, willing to help out with everything that I can’t do.  He understands my limitations.  He doesn’t expect too much from me.  He actually asks how I’m feeling, he knows what exhausts me.  He encourages me to rest ahead of activities that he knows drain me. I’m very lucky.

Is it perfect?  No.  Do we argue?  Yes.  Do we get sick of each other, of the situation, of everything? Yes.

What helps that he is a scientist.  He has a degree in chemistry.  It is in his nature to understand my conditions and to understand why I am taking what medication and when and what it is supposed to do, what its side effects are.  He even read up on my conditions when we were friends and when he had absolutely no intention of spending eternity with me. That was just because he wanted to understand me better as a friend!  He gently reminds me to take care of myself.  He knows I forget to do that because I’m a nurse, it is in my nature to take care of everyone else first.  I will forget my meds, forget to call in refills, forget doctor’s appointments.  So he makes sure I take care of myself.

He goes to most of my appointments with me.  He is my advocate.  I forget things that he might mention and he sees things that I may miss.  I may be an awesome nurse, but I am an awful patient.  My husband will likely mention something to the doc that I have forgotten and it usually makes a difference.  And it is so wonderful to have him there as a support.

And when we do get fed up (especially now living in such close quarters), we talk about it.  Usually over text.  Communication seriously is the key. I know it sounds cliche but if he knows I’m acting a certain way because I’m late on meds (again) or because I’m having more pain because I’m not sleeping, that helps him more than him thinking I’m mad at him for no reason.

And I know that for me personally, having someone that dedicated and committed to me and my well being is paramount to my health, emotionally and mentally.  And that in turn helps me physically.

Maybe all you need is love after all.

 

 

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I: Insurance

I

 

With or without?

I have been on both sides of the coin (and I found out recently that I am abruptly without…but that is another story, fml).

And honestly, it is easier without.  I understand why people aren’t signing up for Obamacare.  Insurance is a pain in the ass.  Sometimes literally.  It can give you diarrhea.  See this post here.

My year without insurance…hmm..I probably didn’t get the BEST care possible.  But I received adequate treatment for my condition.  Steroids have been around forever.  They are cheap.  Methotrexate has been around forever.  It’s cheap.  At one point the doc wanted to try a RA med, but because I was uninsured, I couldn’t have access to it.  But it wasn’t life or death, and it didn’t make a difference in the outcome.

Now, I do owe something like $20,000 in medical bills.  I did have to come off some of my maintenance medication (such as Topamax for migraines) but there are ways to obtain expensive meds.  That paperwork sucks too, but again, it is possible.  I obtained my Lyrica and my migraine meds (Treximet) for free by sending in proof that had virtually no income and a script.

It helps that I’m a nurse.  I know what signs and symptoms are dangerous.  My docs trust me to monitor myself, my blood pressure, to titrate my meds on my own.  So that makes a difference.

Since I have had insurance (since Novemeber).  It has been a pain in the ass to get ANYTHING fucking covered.  Meds, doctors visits, procedures.  I have to prove everything. Prove that I have this.  Prove that I need that.  I have scanned countless receipts, doctors notes, etc into their “easy to use” data base to get shit paid for.  And now I don’t have insurance because the mother of my bonus son doesn’t have his birth certificate and we couldn’t get it from the state in time to make the deadline.

So instead of kicking him off the insurance (he has other coverage, we were just trying to get him BETTER coverage), they kicked us all off.  I went to get my meds the other day and was absolutely shocked at the cash price.  So now I’m paying by the pill until it gets straightened out.

So yes, insurance can be a lovely thing.  But it can also give as many migraines as it prevents.

Suit of armor

therapy

 

 

Certain people in this household do not like the way they are portrayed in this blog.

Oh well.

This is my outlet.  I can’t afford therapy right now.  I’m sick, I’m in the house most of the time.  These are my personal memories so I can look back on a tough time in my life and realize how strong I am for surviving.

Just because I am in someone’s debt it does not mean that they have the right to abuse me and my family.

If you don’t like my perspective on your behavior, change it.  Period.

And if my musings and recollections offend you, try apologizing.  Try looking at your own behavior.  Hell, try professional help.

I will not take down this blog.  I will not be cowed into accepting the abuse because I have no option.  Despite my health, despite our issues, both me and my husband are doing all that we can to be independent.

And when that independence comes, some changes to relationship structures will come as well.  I will not have to tolerate the emotional and psychological abuse.

Think what you will, this is my personal space.  Writing in a journal or a diary doesn’t have the same affect.  I can’t get the support from 100+ readers when I write in my journal.  And actual writing makes my hands hurt.

This stance may make me homeless.  I have friends, I have other family.  Those constant threats do not bother me.

What bothers me is the games played for the affection of my daughter.  She is confused.  She is conflicted.  I see it in her clingy behavior, her demand to be with me at all times.  She asks me everyday to move out.  It’s heartbreaking.

So I will continue to add to my suit of armor.  I am one strong woman.

Day 26

Share:  A difficult time in your life

I read this title and started laughing to myself.  This entire blog was created because of a difficult time in my life.  It’s getting better, slowly, but this is probably the most stressful it has been.

I’ll update instead:

I survived my trip to the east coast.  Yes, it was cold, but apparently we got out just in time to avoid the polar vortex (of doom). I got to see my bonus son and spent some time with him.  That was awesome.  His mom behaved, mostly.  I spent some lovely time with my husband’s family.  They are so warm and welcoming.  A bit different from my current situation with MY family.

But the traveling and the weather got to me. And I needed two days to recover when I got back to Texas.

Things with my mom were worse when we got back, however.  I won’t go into details.  Apparently I’m a horrible mother.

Health wise, my eyes have inflammation in them, but not to the level he wants to treat right now.  My cataract isn’t getting worse.  So good news.

But the reflux and bleeding in my stomach is pretty bad.  I am scheduled for a scope (both ends) next week.  Fun times.

My pain from fibro has increased.  I think its the stress.  My joints in my elbows, hands, hips and ankles are killing me. I am supposed to see the rheumatologist sometime this spring, if I can wait that long.  I’m going to have her run my ANA again.

And the job search has begun in earnest.  I’ve had two interviews so far.  I’m hoping to hear back from them soon.  It is difficult trying to find a job in my industry that can go along with my illness.  I’m honest about what I went through.  I don’t want there to be any surprises if I take a job and my eyes get worse.  I’m mainly looking for part-time, something that isn’t intense or requires a lot of travel or being on my feet.  Good luck finding that nursing position.  If we get a new car, which might be happening fairly soon, I can return to hospice part time.  Fingers crossed.

Sunshine is amazing.  She just got an awesome report card.  She’s selling Girl Scout cookies (anyone want some?) and she is such a good little businesswoman.  She was taking orders from her classmates.  I had to explain to her that their parents probably need to order the cookies, since the kids aren’t carrying cash around with them.

My husband is also amazing.  He’s working so much, but this is a team effort.  I’m essentially his secretary, I get things done while he’s in his work cycle.  Because he works 12 hour night shifts, I don’t see him that much for four days out of the week.  But its worth it.  He’s already gotten promoted twice.

And my mom is working a lot more.  Which means we are getting along.

Today, things are looking up.  I hope by the end of the weekend I’ll have even more good news.

Thank you for reading!!

Day 17

Where do you work?

Well, I’m currently looking for a job.  I had an interview today, but I’m not sure I’ll get it.

I am a nurse.  I have been a nurse for 10 years.  I have a wide variety of experience, from peds to ICU.

After my first brush with chronic illness in 2005, I was advised to stay the hell out of the hospital.  I contracted one of those lovely hospital associated infections and was sick for 9 months.  I have been told repeatedly that my immune system is not normal and I should minimize my exposure to horrific illness as much as possible.

So the hospital and hospital like care centers are out.  That is probably 80% of the field of nursing.

I have done “telephonic nursing”.  I absolutely loved it.  I was able to talk to people all over the country about being healthy, their chronic illnesses and medications.  It was very rewarding.  I left that job when I left my ex husband.  And it killed me to do so.

Since I’ve been here in Texas, I have done public health nursing, which I found boring, and then I went into hospice.

I love hospice care.  I can  handle it, which many nurses can’t.  After my years in the ICU, where I had to disconnect vents, see people perpetually kept in a state of limbo between life and death, providing a “good death” for my patients is key.  A “good death” is where the patient passes away at a location of their choosing, usually at home, and without pain or discomfort.  Patients get that with hospice.

Many times they are diagnosed with something like cancer or lung disease and they decide to forgo all treatment and focus on quality of life rather than quantity.  I have seen patients do some amazing things with the time they have left.  It is very rewarding, very spiritual, very emotional.

My problem with hospice right now is that I don’t think I’m well enough to carry a full caseload of 12-18 patients.  Each patient needs to be seen once a week at the minimum.  Sometimes more.  And the Austin area is pretty spread out.

When I got sick with the autoimmune disease, I was seeing 14 patients in a 50 mile radius.  I was doing 100+ miles per day on my car.  I was also working call on the weekend.  I see now that working so much probably triggered my disease.  So I’m trying to avoid that.

I’m looking for anything 16-20 hours per week that is office based, home based, in home health.  Currently my car is pitiful,  but hopefully we will be getting a new ride soon.

I am applying for telephonic nursing again, office jobs, hospice “as needed” nursing.  Hopefully I get something.

Anyone need a nurse?

 

We won’t get fooled again…

Yes, I’m a classic rock fan…

I’m extremely angry, hurt, sad right now.  I moved in with my parents with reservations.  My mom is seemingly incapable of compassion and support on a regular basis.  My dad is fine, he’s quiet and usually doesn’t do well with hearing anything about my illness, but at least he’s consistent.

My mother on the other hand is just being cruel.  For awhile, she was very supportive “honey, do you need to rest? what can I do for you?” Today she just got vicious.

I have been flaring for the past two weeks.  Pain, fatigue, insomnia.  This isn’t a new phenomenon.  It has happened nearly every year since I was diagnosed in 2005.  When the weather changes, I get sick.  Usually with a combo of fibro symptoms and migraines.  This year is no different.

My mom is obviously unhappy.  She and my dad aren’t getting along, she hasn’t really dealt with my grandfather’s sudden death, she had a pretty traumatic trip up to Pittsburgh in August when she was visiting my grandma.  Threats were made, names were called.  It was awful.  But the difference between me and her is that I would have DEALT WITH IT.  She absolutely refuses to go to therapy.  Everyone else is the problem.  Everyone else is treating her poorly.  She’s fine.

It is pretty clear to me, as her daughter and as a medical professional, that she is experiencing depression.  She is sleeping a lot more, she is irritable, she is spending more time in front of the TV.  She is creating issues and problems and at least once a day throws some sort of hissy fit.

She is deliberately picking fights with me, I think in an effort to exercise some of her pent up emotions toward her family, my dad and with regards to her grief.  Yet, she always seems to make it about me.

According to her, I’m pulling out the “sick card”.  I’m using my illness to my advantage.  She knew this would happen.  Fuck, I KNEW this would happen.  But my back was to the wall.  She promised she would be supportive.  She told me that she understands and will make her best effort to help me.  Right.

Here is an excerpt from her latest text.  BTW, this latest argument is because I told her I can’t clean the bathroom today because I feel like shit, I offered to clean the bathroom tomorrow with the help of my husband (since the chemicals bother me) but she refused:

No, I’ve been fooled too many times to accept your solution. I understand your illness, just don’t honor it like the rest of the family and will call you on it just like you pull out the sick card when is suits you.

She continues:

I don’t think you realize how your illnesses have affected your family.  Hell no they aren’t going to say anything that will conflict with your statements of ill health, its easier to shut up and do it.  Me, not so much…your illness has become the center of your family life and I’m not sure if it is healthy for anybody.

Now, she is speaking for my husband again.  I have a very open and honest relationship with my husband.  Trust me, he is not afraid to share his opinions when it comes to my illness.  The fact that we are still together after four years and one extremely dire year of illness and upheaval speaks volumes as to the type of relationship we have.

I have adapted well over the past eight years.  I am raising a wonderful child who has also adapted to my illness.  Is it perfect?  No.  But I honestly feel that I am doing better than most.  And according to her therapist, Sunshine is extremely well adjusted and my illness is not having any more impact that normal on her development.  Keep in mind that I was diagnosed BEFORE her birth.  I knew she wouldn’t have a normal childhood.  But I wanted to bring her into the world anyway.

Just because things aren’t done to my mother’s specifications and done on her time schedule, it is a problem.  And to bring in my family life when she has no idea what she is talking about, that is just cruel.

I guess it hurts more because its my mom.  She is supposed to love me.  She is supposed to support me and have compassion for me.  It also hurts more because she has periods where she is so supportive.  Where she encourages me to rest, to conserve my energy.  Where she “understands” that I’m not feeling well and doesn’t expect me to jump when she says jump.  This about face is what really twists the knife.

So now, unless we give her more money, she won’t feed us.  We are “on our own”.  I paid up in the beginning of the month.  I have the cancelled checks.  Extortion.

So I will pick up Sunshine and will go to the park until my husband is off of work.  Then we will find dinner.

This makes me sick.  It makes me so very upset and angry and frustrated.  I’m trying my best.  I’m exercising, I’m eating better.  I’m taking my medications and following doctors orders.  I’m trying to strengthen my body so I can continue to work.  Other people see it, namely my dad and my husband.  Hell, even my friends see it.  But she just has to make an issue about something.  There can’t be one day without her having some sort of dramatic fit about something.  And it hurts.

I do want to clarify that we are pretty awesome house-guests.  Everyone does something.  I cook and do the dishes and my laundry.  So does my husband.  We aren’t noisy, we aren’t pigs.  Sunshine even picks up after herself.  My bathroom wasn’t spotless and she chose to make it an issue.  I understand that it is their house, their rules, but I expected a little bit of compassion and flexibility.

I won’t make that mistake again.

I will be back in therapy by the end of the November.

Payday!!

Good Lord, it feels good to be productive again.

I haven’t worked since July of 2012.  I was a hospice nurse (still am in my heart), and I couldn’t drive the 100+ miles per day to see my patients out in rural Texas.  I miss it..

I signed up for a contract job through a company that runs heath fairs and administers flu shots.  I used to work in the immunization department of the local county health department, and I left because I was bored.  But it is the perfect way to get my feet wet and get back to work.

So I sit in Walmart and watch the people go by.  I talk with the old people and the curious.  And I occasionally give shots.  I did 15 today.

And finally, pay day.

First order of business?  Give my dad some money.

I don’t know what happened, but the other day, he hugged me, said he was proud of me, and that he was happy I was living with them again.

I can’t tell you how wonderful that made me feel.  And it felt great to be giving him something toward the household bills, since we are now one big hippie commune.

My first instinct is to scoop up my husband and go to the Melting Pot to celebrate.  But I want to wait until we get a couple of paychecks under us first.

The day to day is a little rough.  I’m still exhausted and in pain most of the time.  But I’m getting through it.  Administering flu shots for 5 hours a day isn’t strenuous.  But having to get up at 5 am, running my husband to work, running Sunshine to school and then getting my own self to work is draining.

People take their energy and pain free lives for granted.  Seriously.

The energy required to get out of bed, put on clothes, find and eat something, getting your shit together and out the door is mind boggling.  Never mind having to get a first grader out the door.

But its working.  So far.  I’m just dead tired when I get home and vegetate till dinner.  Sunday (my only days off until the end of September) found me near comatose for most of the day.

I really didn’t need any energy for that debacle that was the Pittsburgh Steeler game.  When does hockey season start?

So now I’m in to week two.  I just hurt.  But its fibro hurt, not autoimmune hurt.  I’m so glad my parents have a garden tub.

It’s amazing how much stress is relieved when you don’t have to worry about when the lights will be turned off or if you are going to be evicted.  I’m living the high life with both cable tv (actually satellite), reliable internet access and food that doesn’t come from a Velveeta box.

And living with my parents at 31 isn’t that bad.  Right now.  They are sharing in the caretaking duties with Sunshine.  There are five tvs, so theoretically we can all watch what we want to watch at the same time.  I cook and I share those duties with my mom.  My dad and husband take care of the dishes.  My mom is helping with the backload of laundry.

The only “issue” is Miss Punkin (my cat) and her holier than thou attitude concerning my parent’s dogs.

Silvie is being amazing for a pit.  Meaning she hasn’t had my little cat for lunch.  Yet.

Silvie tries to be friends, goes up to Punkin and doesn’t get in her face or growl or anything.  But the second Punkin catches sight of Silvie, her hackles go up and she hisses.  And in the two plus years we have had her, I have seen her hiss exactly one time.

At least Punkin is emerging from under our bed.  When we first got her, she lived in our pull out couch for over a week.  I’d say that’s progress.

And Sunshine loves her new school.  She likes her teachers and she has friends already.  Of course.  My little social butterfly.

So today, things are good.

Planning

Now that the “move” has had a few days to sink in…I’m feeling a little bit of relief.

I’ll miss having my own space.  I’ll miss my privacy.  But I don’t have to worry about food.  Yes, I’m on food stamps, but the amount I get does not cover what this growing family eats.  Maybe about two weeks tops.

And I won’t have the threat of eviction hanging over my head every month.

We still will be having to pay to get out of our lease, but at least we won’t have to worry about basics and all of our money can be going toward a new place.

Or getting out of the last one.

Still overwhelmed at the prospect of getting this place movable in a few weeks.

I’m out of Lyrica again, and eagerly awaiting my refill.  So far I’m very tired and the pain is kicking back up.

And I’m trying to do something fun with the kids every day.  Pool, creek, museums (on free day) etc.

So I’m just worn out.  I’m scared.

But Sunshine is excited.  Its the best of all worlds for her.  She gets her grandparents, her parents under the same roof and gets to go to a new school all at the same time.  A school where she already has friends, thanks to Girl Scouts.

So she is thrilled.

As the plan is to rent a house after we get back on our feet, we told her we can get a dog when that happens.

I just think back the last 10 years.  I made some pretty poor decisions regarding marriage, relationships, money.

I’m amazed that I’m basically content.  I’m happy in  my marriage.  That makes such a huge difference.

Positive thinking:  school is almost back in session for Sunshine (as much as I love her, I do not have the energy to be a source of entertainment all day).  Maybe, after all this is done, we can get a house and maybe (eek!!) think about a baby?

 

Back to the drawingboard

Two weeks of hell with the Plaquenil.

Abdominal pain, nausea, diarrhea.

I endured because 1) I don’t have very many options left in terms of medication and 2) the drug monograph said that the side effects would lessen the longer I took it.

WRONG!

I finally called the doc last week.  She took me off the Plaquenil.  Four days later I’m still having issues.

She called back this week and said she wants me to try the name brand Plaquenil instead of the generic.

I’m wary.  I’m not sure how much different it will be and the cost….well…let’s just say that I cannot afford it.

I see the eye doc later this week, hopefully he has some good news.

The financial situation is still perilous.  Horribly so.

If you have a few bucks and you want to help, check out my “gofundme” page:  http://www.gofundme.com/3ciaqc

On the plus side, the inability to eat and constant GI symptoms have left me 10lbs lighter.

Plaquenil

Finally started Plaquenil yesterday.

So far, so good.

Nausea and dizziness seems to be the worst of the side effects so far.

I’m glad to finally be on it because the joint pain was getting pretty severe.

I know the Plaquenil won’t give me any relief for awhile, but at least its a start.

My eyes seem to be a bit worse, however.

Anytime I cry (which unfortunately has been more frequent), my eyes feel swollen and “fog up” for hours afterward.  It looks like my glasses do when I step outside when the humidity is near 100%.  But on the inside.

I see the eye doc in three weeks.  Hopefully the Plaquenil will help enough to keep me from getting another injection IN MY EYE.

Financially, things are tolerable.  The threat of eviction has been nullified for at least two months.  It came close, though.  I am eternally grateful to both of our parents for keeping us afloat.

My main concern (other than the cost of moving) was for Sunshine.  She LOVES her school.  She is comfortable there, everyone knows her.  I honestly didn’t think she would do well with ANOTHER change, given the difficult year she just had.

I do what I have to do to help my daughter.

Positive thinking:  I have been spending a lot of time with my bonus son.  We are watching funny TV shows, superhero movies.  Definitely takes my mind off of things.