Treatment Pain? Hey ho! Beats Severe Itchiness!

The new I.V. treatment has been the best on side effects so far. I do get knocked out for a day or two with crippling exhaustion but it's a definite improvement over past experiences. Until this week's treatment when I developed a bad case of pain in my arm above/at the treatment site. At first I figured it was some weird 'hey. this needle pissed me off so I'm gonna let you know' memo from the body.

Give it a day or two and everything goes back to normal. Eh. Normal for me that is. Except the pain  has not decreased but increased. Almost like it's spreading deeper into the arm. I have to treat it with care as certain movements tend to increase the pain. Most people would think this is a terrible scenario. They suck at dealing with pain.

I, however, feel priviledged about it. I did say I would rather have pain then severe itchiness. The other treatment option was the one which left me scratching away like no tomorrow. I vowed to count my lucky stars (sounds like a knockoff cereal) if pain showed up over severe itchiness. No one wants to look like I did after that. I even took a picture just to show my doctor the reason why I was never ever doing anything with DMSO pills again.

So Hey ho! In keeping with the Surname Optimistic Way of Thinking: I have pain in my arm but hey ho! It's not severe itchiness all over me. Plus, the sun is shining and I finally get to see the long-time boyfriend after a very long week. Ah. Life could not be more beautiful pain or no pain.

Bahaha! O. The Childhood Thrift Store Joys That Make Chronically ill Life Amusing!

Who knew writing about something found in a local thrift store would be chosen to be shown to hundreds of visitors to the site I write at? Not me. Actually, I wrote it for a 'Quest' and also because books back in my day were so awesome. Especially ones about hospital things. Now that I've been there to many times myself I find it just hilarious to compare the truths of today versus the Curious George 'enhanced' happy version of yesteryear.

Like usual I was checking my account every several days when I discovered my featured work. Mainly from CONGRATULATIONS comments versus actually understanding I was front and center. Hey! No one ever claimed double concussions make you sharper. I feel justified in saying I was a bit slow to getting 'it.' 

Here's the site:  http://www.squidoo.com/ which features me all of today as LoTD. No idea what LoTD means? Look it up on there. If you're completely lost, here is paragraph one:

On a thrift store jaunt I was thrilled to discover a childhood favorite, Curious George Goes to the Hospital. No stranger to hospitals myself I had just been discussing how I loved this adventure. We immediately bought the book and attempted to read it to my exuberant niece. While she tottered around screeching (she’s only just discovered the joys of walking) my dad read the curious tale out loud. 

(continued at http://books.squidoo.com/curious-george-goes-to-the-hospital-best-medical-childhood-classic).

Clearly I was enjoying life way to much yesterday. Or should I say on Tuesday. Watching a 15 month old can do that to even the most miserable feeling of us. As for today: enjoy life. Go read a book. I'm off for a coffee with Bailey's (having booze with coffee makes it acceptable for early drinking so don't complain) to celebrate.

It's Been a Chronically ill While!

I wish I had an awesome reason for my absence. True. I definitely started a new treatment but that is hardly on the unusual side. According to my older brother answering "I'm going to the doctor this week" does not count as answer to 'What's new this week?' Dang. He really knows how to shoot me down. I can't claim to even have learned any new skills. The best I can say is I did do some Sculpey attempts and watched most (skipped a few) of R2 Code Geass.

The lack of excitement is not why I have not been writing though. I have had yet another rejection for my attempts at disability, had a battle over medical record nonsense, and this treatment kinda sucks. Not much to be excited over. Except today I woke up and the sun was shining for the second day in a row. It's unseasonably warm. People are already out boating on the lake. My sister got to Africa safely and my mother to Germany, also I totally got an awesome pattern for 49 cents at Goodwill.

Life can be good. Time I started getting back to that mindset. Also, I did get back into my size 00 skinnies (whoo hoo!). I just can't wear Jobst stockings with them or my poor legs complain. Ah. The difficulties of being a woman. You have to come to a compromise with your own pants.

It's easy to be off the record when you don' t need your own.

We are finally going to try the Mayo Clinic route. I have called the insurance and they are in network. All we need are the medical records. Easy right? Wrong! I am having a helluva time getting my own records. Did I mention they are mine?

 I have had to fill out forms to mail in because you cannot get records by fax, email, or phone. Evidently snail mail is still the rage despite everything going digital. Waste of postage is what I say. Along with postage fees comes the bill for every sheet of results. We are talking a dollar + per page. Utter shite.

Of course we tried the thrifty route. Send the records to your doctor and it is free. Only to realize they cannot give you the records because they have been sent from another medical provider. Again with the it is my medical record yet I cannot have it. If you can't have your own records then what can you have?

Sometimes living the chronically ill life is downright ridiculously frustrating in the most random of places. To try and counter all this snail mail stuff I am going to get my now-authorized (can only authorize via mail) records in person. With my i.d and directions to get there I think I will finally be getting out okay. That will take take care of one medical system's records. Whoo hoo! Only two more to go before my records become..well..mine.

Chronic illness Finds Grandmother Too

Being chronically ill has meant losing a lot of people and gaining more than I ever thought was needed. One of the most important being a lady who I have come to view as a grandmother. My own grandmother never knew who I was; much less sat and taught me how to sew or hugged me when I needed support. True. She was already well into the later stages of dementia by the time I was old enough to understand it. This explains away many a sadness but I am told of other events which make me ponder whether or not I would have found a grandmotherly love from her.

My younger sister claims I grow attached to people easily. Not necessarily true. When it comes to friendships I have dealt with far to many negative experiences to allow myself full trust in anyone. Being sick only taught me a great deal of painful lessons regarding so-called 'best friend' relationships. To this day, I still don't believe I will ever get over the events to declare someone else to have the role. I learned the hard way. For a while it was a bitter thing to admit but I have grown a great deal in understanding since then.

In life I always wished a bit for a grandmother. I have an Oma but she is a very big ocean away and visits are few and far between. There is a great deal of love but never the closeness I secretly wanted. Last night I attended a Mother-Daughter banquet and invited my 'Grandmother too.' I would not call the relationship we have a grandmother-granddaughter precisely. More like friends whose closeness grew out of a shared love for a hobby. We can confide in each other as I try not to sew my finger into the sewing machine again. She taught me a new way to make use of my shaky hands. In return, I fill our time with hopeful chatter about the future.

She will never be the typical sugar-cookie-making grandmother. I know she has her own children but never will have grandchildren. I'm happy to fill the role. When she said yes to the mother-daughter banquet I was thrilled. Blood may be what makes family but the heart is what truly counts. My heart sees her as family regardless of what genetics argue. Having a chronic illness brought emptiness to this life but a grandmother too helps fill the hole left behind.

Why You Need All That?

My family can only agree on one show to mutually watch on cable: House Hunters International. Mostly because we have all traveled so much it is fun to be like o..moving to Rome? Been there. Madrid? Yep. Berlin? Totally. Etc. There are many things I can stomach about the show but after a while there are points which almost make me cringe.

The worst is when people expect so much for so little because they are in another country. We have to laugh when people assume American housing sizes will happen when wanting to live in a European city center for a low budget. So what if the washer is in the kitchen? Be thrilled you have one! As for the 'small' fridge: take a hint for your health and try going with more fresh foods and less processed.

Why you need all that? Grammatically incorrect and all. Do we really need everything on our wish lists? Yes and no. Mostly no. Unless your wish lists consists mostly of medications necessary, like mine, then you absolutely should go with it. 

Maybe I'm petty or just really grouchy (it's been a very long day) because I feel downright annoyed at people who have a healthy body, job, and ability to travel but downright complain about all they need when in the end they don't really need it at all.  I want to tell them 1) if you don't increase your budge then you won't get what you want and 2) want to give me some of your health? I would to have your health! Heck. I will even through in the American-size fridge. Trust me. Being sick will make you wish you never complained in the first place.

First Day I.V. EDTA Goes Suprisingly Okay!

My doctor's treatment experiences can be classified (to me anyway) as: ineffective, short-term misery, wtf is this shite when will it go away, and I think it helped(?). He gave up on the reassurance of people feeling better/having a positive experience. My body seems to take these comments as a challenge to react in the worst ways possible. After one particularly brutal test which the nurse vowed to never inflict upon me again my disgruntled father asked, 'why am I paying good money to make you sick?' I used to try to explain the end result was to find ways to make me better but now prefer if we just do lunch instead.

Today was the first EDTA intraveneous infusion(?). Like with any of my good ole tests I had to sign a waiver. Not to alarm you just to warn you of all the possible negative things which could occur from this. Also, I thought the treatment was for the crazy amounts of lead in me. He listed it for tremors. Supposedly the high levels of lead could be the cause of them. I told the secretary I was all for the 'tremor treatment idea!' Way more encouraging sounding then decreasing lead levels.

Being myself I read through the possible side effects with amusement. 'Ah. Syncope. Have that one already. Tachycardia. That one too. Vertigo. That one as well! Etc. I laughed. "I've already got these so no worries!" Ha. Thus the Surname Positive Way of Thinking asserts itself as always. Hey ho! It's not Anaphylactic shock just a bunch of non-life threatening symptoms. Cheers!

I'm happy to report unlike certain other treatments *cough Meyer's Cocktail cough* the most painful part was the needle into the arm. I didn't feel better or worse immediately. My migraine still sucked but I did randomly develop the urge to vomit halfway home. I'm a master at controlling the puking until slightly more opportune times. I try to anyway. Be proud. I made it home. Downed prescription generic Zofram and shut my mouth tight until it passed. Took Excedrin and passed out until my mom came home to ask the ever obvious 'are you asleep? feeling okay?' She always asks if I'm asleep when I clearly am. Today's answer: "....I'm sleeping..." 

To recap: insurance does not pay for the treatment (lame), I did not feel any insane pain, suffer any someone-put-me-out-of-my-misery reactions, and did not vomit all over the car. Excellent progress if I do say so myself. On to a victory fruit smoothie and attempt at a new hobby!

Where Do We Go?

I've lost track of the times where I wonder 'where am I supposed to go from this place?' Stopping and starting are all a piece of this life. Sometimes we get stuck at the stops and others we fairly fly through. I might once have been flying my way through but lately I'm pretty much feeling about as active as a broken-down semi in a rest stop midway through the Dakotas.

When I was first learning to deal with the chronic illness I was positive this would all be quite the short stopping point. Yet here I remain. With myself, I think I can whether the storm. In a relationship? There has to be movement. We can't wait forever and yet, so much depends on moving forward in the right way. One person cannot support a relationship solely on their own. I had no idea they were even attempting to. Now I find out and wonder where we stopped and why we never kept on moving forward.

Where do we go? Can there still be a we? Should there be? The longer I stay here, the more questions I find myself wondering. Somehow in someway, I need to find a way to help move forward. To make what was once a single support into a strong companionship. Is it to late?