Just call me Jiji

…me, just pretending to be me ….now, where did I put that cape??

Archive for the tag “medical”

WTF – What The Fibro is Wrong with Me?

 In my previous post I recounted my past six months of Fibro flare-up hell.

It feels all wrong! Not that there is ever anything right about Fibro; but this has been wronger then usual.

Is my fibro changing? Getting Worse?

Actually that is a really dumb question. Of course it is changing. As we age we change, stands to reason that our disabilities change too. Some things get easier to tolerate, while other things get worse.

But what if I am not getting worse? What if this is something completely different all together? It is all too easy to just blame everything on fibro all the time. But the possibility that I could have something in addition to FMS, is feasible, isn’t it? What if I was completely misdiagnosed all together?

This year of pain and exhaustion has felt so intensely bad that this can’t just be my fibro; it HAS to be something more than that.  …Doesn’t it?

I know, I know, that’s what my doctor is for. But there have been issues with the whole seeking medical attention thing this past year. My last visit with my primary care doctor in 2010 was for my routine 3 month fibro maintenance follow-up in October. It was before this flare-up really reared its ugly head, so I reported that I was feeling pretty good at the time. Then winter came in and decimated me with freezing cold weather and blizzards. My regularly scheduled winter flare-up tore me down, big time.

My next 3 month appointment which was scheduled for the end of January, didn’t work out, because I had to reschedule it due to the fact that Ron had commandeered my van for work when his car died and I no longer had transportation. Well, that and it was so bitterly cold that I just couldn’t get out of bed, let alone my house.

Unfortunately, I had to cancel the March appointment too. My sister was in the hospital and sadly, at 23 weeks pregnant, lost her baby. It was a very difficult month both in the weeks prior when the complications in her pregnancy arose, and after – as this was a terrible loss.

We all mourn the loss of the sweet little girl who was taken before we could know her but not before we loved her.

It was the beginning of April that I FINALLY met with my doctor. But it wasn’t a regular maintenance visit; it was a sick visit – for my nasal/bronchial issues. Dr. T is pretty much a stickler about only getting into what the appointment was scheduled for so I was shooed out of the examining room before I had a chance to go into any details about what was going on. But not before he suggested I see a Physiatrist first and then go back and see him. I think he was reprimanding/punishing me for not keeping my appointments…

I had no idea what a physiatrist was, so I looked it up here. And after I checked out the doctor’s website, I felt hopeful that this was going to be my answer. After months of no energy or strength, and constant fatigue and pain I was more than ready for answers. When I spoke with the receptionist to make my appointment, I had to admit that it had been more than 6 years since I had any MRI’s or other testing done. Because up till now I was maintaining my Fibro with meds; and flare-ups, although still painful, came and then WENT.

She told me not to worry; the doctor would order all new tests. When I got off the phone I felt a sense of relief. I just wanted to get answers to what was going on with me. And, here was a doctor that “instead of treating only specific symptoms and illnesses, a D.O. will regard your body as an integrated whole”, according to his website.

I had been going through so much difficulty and pain, all I wanted was to start anew. The seasons were changing and I was tired of hibernating. I had spent so long trapped in my home by the cold weather; my illness; and with still no transportation; and although I still felt like utter crap, I had to force myself to join the land of the living again, if anything, for sanity’s sake. I had been a shut in for so long that even my friendships were suffering. I tend to withdraw from people; friends and family alike; when things get this raw (read painful and depressing). And believe me this was raw!

In my effort to reconnect with my friends (and family) I felt I owed it to them to clarify why I needed to withdraw so much, why I bailed on commitments I had made, why I could not be reached by phone or even return messages. I felt I had to explain that I don’t mean to be a lousy friend, who forgets things, breaks promises, and just disappears.

In the process, of explaining what I was going through, I surprisingly had three separate people who didn’t even know each other suggest that it sounded like I had MS.

MS? Really? multiple sclerosis

I had heard of MS; but in truth I didn’t know anything about it, at all. It would never have occurred to me. When the first person said something to me I did what I always do; I disregarded the possibility that it could be anything but Fibro. After all, I had my diagnosis, and it took forever to get that in the first place, I didn’t want to start questioning it, no way.

But then a second friend suggested it as well. She knew a lot about it and started describing me, to me. All I could do was keep sit there nodding and saying, “Yeah, that’s me!”, “that’s exactly what’s happening to me”, “you are describing me”; her response was, “no, I am describing MS”.

Thoughts that crept around in my head: Oh crap!! Do I have MS? Wait! What the hell is MS?; What are the symptoms?; How do I know if this is what I have?; Do I really wanna know?

So I peeked, just a little, I looked it up on the internet. Just enough to get general info. I am all for getting self-informed and getting educated about something like ADHD, for instance, when your child has been diagnosed with it. But with this, I just didn’t want to read so much in to it, that I’d start self-diagnosing before I even see the doctor. What I read up on was the basics; the symptoms and how one get’s diagnosed.  I also read that it isn’t unheard of for someone suffering from MS to be misdiagnosed with Fibro.

As my appointment with the physiatrist drew nearer I got more and more emotional about how bad this whole year has been so far because of some illness that I have. I just wanted answers and I felt that in order to do that I need to start from scratch. I want to wipe the slate clean and start fresh as if I had never gotten my diagnosis for FMS all those years ago. Like I mentioned earlier, it is all too easy to pigeon-hole everything into Fibro without considering there might be something else going on.

A few hours before my appointment, I sat down and I just started writing and I kept writing until I had 3 pages full of what I needed to remember to discuss with the doctor. I listed symptoms, body parts affected, descriptions of the level of pain I was feeling, the emotional toll it was taking on me, etc.

It was unfortunate that after all the time I took to prepare, I ended up forgetting it all at home. I was beside myself. The poor doctor did not know what to do with me. I just started crying and crying. I could not get my thoughts together, I was forgetting everything I wanted to talk about AND what was worse was this doctor just was not living up to my expectations. I wanted him to have all the answers, to fix me, to order the tests that were going to get me my answers.

The doctor didn’t actually do anything wrong, he was just not right for me. He focused on the pain in my arms and scheduled an EKG/nerve test. Through my tears I managed to tell him I felt that that wasn’t enough. What about the pains in the rest of my body? His response was that he wanted to focus on one thing at a time and he advised me to go back to my primary care physician for a referral to a rheumatologist for my fibro.

I left there in tears. I cried all the way home and by the time I walked back into my house I was sobbing uncontrollably; poor Ron and Leon had no idea what was going on and were very concerned.

I want a doctor that was going to treat the whole of me; not just the parts of me. This is not what I got in this doctor. I realize that I had put way too much stock in this one visit, and my hopes and expectations were waaaay too high. I was overly emotional, and at a loss. Now what?

The fact is I don’t see a rheumatologist although I know I should, but after never being able to get an appointment with the one that I initially had, the one who diagnosed the fibro, I began to rely on the neurologist that she had sent me to. I was maintaining fairly well with the meds that my neuro had prescribed.  Eventually I lost my neuro too, due to the fact that she became ill and left the practice. In the end I never did find a new rheumatologist or neurologist; my primary care doctor was prescribing the medications I needed, so I felt that there was no need to find another one; till now that is.

Last week I met with my primary care physician, to discuss a plan. This time I did not forget my notes. Even so, I was still a blubbering fool, with tears falling uncontrollably from my eyes, as I explained how bad things had gotten and how lost I felt. I explained that I was concerned that what is going on with me was something worse than Fibro and I shared the suspicions of MS that others and now myself had. In the end my doctor told me that he feels that I have extreme Fibromyalgia and that I am suffering from severe depression; he also feels that I am beyond his help at this point and he referred me to a rheumatologist and a psychiatrist. When I questioned the MS again, he told me that he felt it was unlikely that I had MS at all. I would love to just accept that but I am too worried about something being over looked because it is too easy to stick with the original diagnosis. He gave me the name of a neurologist to call, if I felt the need to pursue it.

I do and I did. Feel the need to pursue it I mean. I have an appointment with both a rheumatologist and a neurologist next week. I have not scheduled an appointment with a psychiatrist yet as I have yet to find one that takes my insurance.

In the several days it has taken me to write this post (I can only do a little at a time due to the pain in my arms and hands) the tears have seemed to come to a halt. Writing and getting all these thoughts and feelings out of my head seems to help a lot. But I will bring the tissues to my next appointment; just in case. 😉

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Too Many Tears in my Ears

I lost it on Sunday. I was just trying to be ‘normal’, just trying to do normal. But it was just too, too much.

Lately that’s nothing new – things being too much, I mean. By lately, I mean the past 6 months, and by things, I mean everything – life, pain, thinking, breathing, functioning, and living all of it.

I feel like I have lost so much of my life in the past 6 months, I was just trying to get a little bit of it back.

Last year was a pretty decent year but I must say this one pretty much sucks big time.  My health started to take a real steep dive just before Christmas 2010. Our winter was brutal. I think we had a total accumulation of about 60′ of snow. We had snowstorm after snowstorm after snowstorm and then some.

My annual winter fibro flare went in to high gear. The extreme cold had its grip on me. I was snowed in, in more ways than one. I pretty much did not step foot outside the house unless I had to. When I did, I would instantly freeze up from the inside out, the pain and stiffness was just too much to bear. I spent my days either in bed or on the couch for most of Jan and Feb, I felt like a bed ridden shut in.

And the worst part was that it was just never-ending. Never ending pain and never-ending fatigue.  I just could not wait for spring to come, for this flare-up to end!

In January, Ron’s car broke down the same night of a big storm. We knew we would have to get it looked at but aside from it being completely buried under a few feet of snow; we didn’t have the money to have it looked at, let alone repaired. He did manage to dig my van out and he used that for the next several weeks which turned in to a few months. I had no car, in an area where a car is practically a requirement. But, I didn’t mind, I was still in way too much pain to even leave the house for the time being.

On top of this all too long flare-up that I was caught up in, I also got real sick in the end of February. It started out normal enough, with a sore throat, post nasal grossness and a sinus infection but then turned ugly in a really bad bronchial, can’t stop coughing, cold sweats, have no energy, and I think I am going to die sort of way. That lasted into the first week or two of April. Thats 2 months worth of mucus people; not what you need during a mega flare-up

So there I was in a never-ending flare-up with a never-ending cold during a seemingly never-ending winter. MISERABLE!

THINK SPRING! THINK SPRING! THINK SPRING!

Spring was just a big tease! She’d show up for a day or two; and then wham winter claimed the next few days again. And this was NOT a onetime occurrence, I’ll tell you that. It seemed Mother Nature just could not make up her mind. But eventually the sun stayed and flowers started blooming.

This is normally the time when I start feeling stronger. But, I came out of the whole sinus/bronchial/death thing; feeling weaker than ever. I just could not function. All normal daily activities were suspended.

The pain was still there, the fatigue, the stiffness, the I-am-so-caught-up-in-this that-I-can’t-catch-up of it all, was STILL there. And the weakness, and lack of energy, that was there, the I just can NOT function at all, the I can’t think straight, I can’t remember things that just happened moments ago, the holy crap my mind knows I’ve got things to do but my body isn’t letting me, was all constantly in the way.

That’s NOT normal, not for this long anyway even with having fibro.   THIS was something different – SOMETHING WORSE – more intense, with new symptoms and different pain.

I am not used to never-ending flare-ups. Nor was I used to the new more intense symptoms. It’s all been just too all-consuming.

And though I have said it before; it doesn’t just hurt me physically, but it contorts me emotionally and mentally too! And then, there is the fallout that affects those closest to me. Ron and Leon being the primary victims.

I feel like a failure as a mother and wife! Poor Ron has had to do so much more than his fair share. He is exhausted and stressed from work, taking care of Leon and taking care of me. My worst fear has always been losing the people I love, like I lost my father. But I now fear something worse. I fear that Ron will grow to hate me, and resent me and my illness.

Leon suffers the effects just as much, in that his mom isn’t all that present. I feel like a non person right now. I am failing the two most important people in my life, and I am failing myself.

Supermom has left the building and the kryptonite which is my illness is killing that part of me. The me I want to be, part of me.

I haven’t even been physically able to keep up my own home. So crap has been piling up since January. At this point we could be featured on hoarders, because life is cluttered and messy and I do not have the ability to clean up after life. Even with Ron’s tremendous help, it’s been nearly impossible to catch up. And when we get close more comes our way and everything is put on hold.

It’s been 6 months of this and while Ron has done everything humanly possible to juggle everything, it hasn’t worked.

It’s time to get back to normal. I just want to get back to doing normal things. I And we need to start at home. Ron and I committed the weekend to doing just that. We were trying to clean up and organize 6 months worth of mess in just one weekend. I pushed myself to the limit. And I broke!  I pushed way too hard, by the end of the day on Sunday I could barely stand straight or move without a yelp or painful grunt. I was spent in every way possible, just struggling to walk from one room to another. Ron wasn’t faring any better. With both of us completely spent, and only one last nerve left between the both of us; it did take much for it to be triggered.

I don’t even remember who or what triggered it initially, I just remember being disgusted with my self and my situation, and questioning “why me?”; I lost it. And I lost it BIG!! I just collapsed into bed and started to cry and cry and cry and I just could not stop.

Today is Wednesday and I’ve been crying every day since.

This year has been all too too much!

There have been way too many tears in my ears; it’s time to find out what is wrong with me.

Something is definitely wrong with me!!

So much to do… so little time

tinkerbellkitchenBusy, busy, busy…

I feel as if I am always busy, always trying to accomplish something, finish something, start something, organize something, or clean something. Yet none of it ever seems to get done?

There are the things I don’t really want to do, but I have to do; like cleaning up the house, and grocery shopping. I am very very lucky in that Ron helps out around the house A LOT. I mean A LOT, a lot! And for that I am very, very grateful but I often feel guilty, embarrassed even. I love that he is so good to me and helps me out so much because of my Fibro, but sometimes I secretly wish he wouldn’t talk about it so openly to everyone else. Like when someone calls and asks what he’s up to and rattles off a list of household chores that he is planning on doing. Granted he is doing it to alleviate me and keep me from doing so much that I get a bad flare-up. But not everyone remembers that. I am the SAHM, I am the one who is supposed to be taking care of the household while he brings home the bacon, (although I do bring in some bacon). So I try to keep up with the house as much as I can on a daily basis. I hate when he gets home from a long day at work and sees the house is a mess and feels he has to clean it up even when I insist he leaves it because I will get to it.

It seems I just can’t ever get it all done. Having my 18 month old niece (whom I babysit on a daily basis) running around undoing everything I do gets exhausting. I feel like I am never, never done cleaning. It seems like while I am busy cleaning up one mess she is busy making another. My day pretty much consists of me sweeping up after her 2 or 3 times a day (she’s got a good arm, I’ve seen her fling chicken clear into the next room); mopping up spills, feeding her, changing diapers, picking up her toys over and over and over  again, all while trying to keep her entertained at the same time. By the time I am finally done and ready to hand her over to her mom, it’s time to pick Leon up from camp. Now my attention is turned to him. Given his ADHD and his need for things to be just so and for immediate gratification, life gets even more demanding and exhausting. I am his mom, his playmate, his personal chef, his maid, his sounding board, and his entertainer. By the time Ron gets home there’s a new mess to clean up and I am exhausted mentally and physically. With all the running around I do all day I end up with nothing to show for it. I HATE THAT!

Then there are the things I need to do but have a hard time accomplishing it. Like finding a good doctor for Leon to manage his ADHD/ODD meds that won’t cost us a fortune. This week alone I have spent about 6 hours on the phone between doctors and insurance, and CSE just trying to get what Leon needs. And I still have NOTHING to show for it. I need to find a child psychiatrist that works with children with ADHD/ODD and takes my insurance. I also want to get Leon in a social skills class. That should not be too much to ask, right?. Wrong. I started with calling MDs that were recommended to me by other MDs and parents of children with ADHD. That didn’t work. Then I called the insurance company and got a list of names. Most of the doctors are too far away, or don’t take my insurance anymore and the rest have yet to return my phone call. All that time and aggravation and still nothing! The MDs that come so highly recommended and don’t take my insurance or any insurance are unbelievably expensive. One quoted $675 for the first initial visit and $190 for every once a month visit there after. The one that CSE was helpful enough to recommend is in Manhattan and would give me a discounted rate of $200 (instead of $400) per visit –  Add the commute by train or gas and tolls, not to mention travel tome – it’s a steal! NOT!!! My insurance will cover 80% of what they consider  is reasonable and customary for out of network costs but only after we meet an additional$2300 out of network deductable.  So given the options the next step is to find a neurologist in network that has knowledge of children with ADHD. Hopefully this will go better.

I also feel I need to find a way to make more money. The obvious choice would be to get a job, but I already have a job – two in fact. my #1 job is as Leonsmom. Being a mom is an extremely hard yet fulfilling job. Being a mom to a child with special needs, a child who is disabled is a bit harder (and still equally fulfilling). My second job is helping my sister out by providing childcare for my niece (and for those of you who know me well and know my sister – you all know how difficult that can be).  Up until recently I was providing childcare to another little girl. But that ended in May around the time Leon was having so much difficulty with his ADHD. At the time I was fine with her leaving because I really needed to focus on Leon and what was going on with him. But now that things have settled a bit, we are really feeling a loss of that income. Idealy I would like to find another child to care for but I want to wait till school starts for that. In the meantime I want to find a way to earn some money for the little extras we want to do this summer like camping and waterparks and cub scout activities and our trip to Disney at the end of next month. The trip itself is all paid for already (less than $100 a day for all 3 of us including tickets, airfare, and hotel – can’t beat that!) but we still have to eat. Some things I’d like to do in the hopes of making some extra money is have a garage sale, collect empty cans for deposits, and create tie dye Mickey shirts to sell. I just don’t know where to find the time?  

Lastly are the things that I want to do, but just can’t seem to start, or if I do start them I just can’t seem to finish ’em. For lack of time, or funds, or talent, or whatever. Like have the garage sale or make the tie dye mickey shirts (not just to sell but for our trip as well). I also want to create some iron on designs for our trip.I want to find time to actually sit down and plan out our Disney trip and what we are going to do there. I want to put together an ADHD binder, with all the information that I have collected about this disorder and how it pertains to Leon. I also want to write up a detailed history of Leon’s ADHD in a handout that I can just give to whatever new doctor will be treating him. Something I can keep updated through out his life for whatever come up. I want to put my pictures together and make scrapbooks rather than just leave them in my computer.  Additionally I want to find time to blog. I want to blog about how well Leon is doing since being completely off the Zoloft, and about how our summer is going and the camping trip we just took, and my plans for Disney, I want to blog about the results of Leon’s assessment with the amazing Dr. Petrosky, and my hopes (and fears) for our CSE meeting. right now I am using Kiera’s nap to write this instead of making calls or cleaning 😦    And I want to do so so much more……

I have to…,

                       I need to…,

                                                 I want to…

                                                                   …but when???

 

There is some GOOD news. Ron and Leon are going to be away for the weekend on a Cub Scout camping trip, and I will be home all by my lonesome. I can not wait!! I plan to unplug the phone, blast the music, dance in my underwear, paint my nails, and oh yeah, one or two of the things listed above 🙂

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