Insurance sucks!

So we are fighting with insurance for more therapy. We got denied any special exception and will have to fight insurance further and possibly do an appeal to the state of Maryland. It is amazing to think that they just lump a person with paraplegia in with everyone else. Wouldn't you think that a person like me would warrant more therapy than someone that sprained their ankle?

I am totally pissed, annoyed, and discouraged. If I do therapy at the rate the insurance company wants I will walk when hell freezes over.

I am going to stop blogging now so I don't write completely offensive things that could screw up more than just my therapy.

June - can you believe it!

Amazing how quickly May passed by. June brings with it the end of therapy for me, the end of another school year for the kids, and one month closer to our new home. I cannot believe Charlotte has completed kindergarten, Lee will be headed to second grade, and Alex is going to turn 3.

No major plans for the summer. If you know me well you know I absolutely love the pool. This wheelchair crap makes going to the pool a big pain in the rear. I have figured out how to lift myself out of the pool but it is getting back into the chair all slippery that is a challenge. Additionally, I am pretty much limited to going swimming with Dave. It is kind of like being a child again and needing adult supervision. Hopefully all this strength training this summer will get me to the point so I can manage the pool on my own. Managing the pool with three kids alone is a whole different ball of wax. Unfortunately Alex didn't acquire a fear of water when I landed myself in a wheelchair so keeping him from drowning trumps my desire to swim.

My MRI got rescheduled for the end of the month. The test will let us know if the myelitis has finally run its course. Pray to God it has. The next hurdle is a couple more years out the entire thing can do damage again. Again pray to God I manage to skip that!

Will keep you update with any news.

Delay with the MRI - end of therapy?

My MRI got delayed until the beginning of June so I will update folks once that happens. Also my therapy days will come to an end at the end of May. We are submitting a request for more therapy days from the insurance company. Until the official request is submitted and we hear back from them I will be on a break. This totally sucks! I have been taking advantage of the pool up at therapy and have progressed to using a walker to do my loose interpretation of walking instead of parallel bars. I pray to god that everything works out and I can continue with therapy. I just have to believe that it will be temporary set back and I will be back on the path to walking again soon.

In the meantime I will begin some strength training locally to keep up my endurance and not loose any strength I have acquired. I will also have to make the trip to Baltimore for open gym time to ride the stimulation bike (they zap my leg muscles while the stationary bike moves the pedals). We are going to request a stim bike for home....hopefully insurance will cover it so I don't have to drive over 2 hours to ride a bike for 45 minutes.

A lot of things rest in the insurance companies hands right now and that makes me uneasy. I just have to keep my faith that it will all work out.

No more Avastin?

I was scheduled to do the next round of Avastin today and then my neuro doc called. Supposedly they presented my case at some conference and ran across another doctor that has been using Avastin. According to the anecdotal evidence, that is very few and far between, they discovered that Avastin might have a risk of stroke and could cause more damage then good a lot sooner than they anticipated. So we canceled today's infusion and scheduled an MRI instead for Monday. My doctor would like to review the MRI and see if the inflammation is gone - if so we will stop doing the Avastin.

So a wait see again. I am grateful that they discovered this new info before anything bad happened to me. I will let everyone know what the MRI says.

April gone already?

I can't believe we are nearing the end of April already. Since my last hospital stay I got back into therapy and into the new swing of things out on Kent Island. I had made such great progress before my last pneumonia and I am trying to get back there after the time away. It is so completely frustrating - two steps forward one step backwards. (you totally notice that a lot of sayings are related to walking when you can't walk anymore)

They began working on the new house last week. I am very excited to move into a completely accessible home. I like our rental and it is light years better than the house in Silver Spring, but I can't wait for all the great things to come with the new digs.

My new oncologist is changing things up a bit with how we track the remission of my cancer. He follows people with CT's and not PET scans........this is making me nervous. They are more than happy to give me a PET if I want but it is up to me. I really don't relish doing the PET scan now that I am unable to walk but I like the security of knowing if anything is active. I will figure out soon how to move forward. Michele said get the scan if I won't be able to sleep - I think she has a point. My new oncologist is however giving me the green light to get all my immunizations updated plus allowing the kids to get all there missing shots. We are all seriously behind and I am nervous since there has been an outbreak of measles. My new doc also suggests testing something in my blood that measure my immune system and if it is low give me IVIG therapy. This might be a reason why I keep getting pneumonia and the drip could get me on the path to fighting bugs off better. Of course we would have to see if insurance will cover it.

Dave is out of town and gearing up for a very busy month of travelling this May. Charlotte learned how to ride her 2 wheel bike and she and Lee are all over the development riding bikes. Alex has a scooter and follows them everywhere. Of course I packed up my camera but I will use Lee's camera and post some pictures soon.

We moved and a trip to the ER

We made it! The move was painful but we made it to the other side and are now in Kent Island, MD. The rental home is better for me then the old house in Silver Spring. I can sleep in a real bed, use the shower, get in and out of the house with the use of a ramp, and finally got my hand controls in the car.

Life was rolling along wonderfully Sunday; sunny day, new place, taking walks with the kids. Then Monday morning I drove up to therapy (first time driving myself) and ended up with a fever and an ambulance ride to the Hopkins ER. I was admitted back to my home away from home with pneumonia and stayed there until Thursday.

I am back in our place. I am still tired and feeling a bit worn down but happy to be out of the hospital.

Life is such a roller coaster.

Avastin done!

Finally the next round of Avastin is done - only 1 month behind schedule thanks to insurance. Michele got to cart me up to Baltimore at the crack of dawn to get my open gym time on the FES bike (the bike that zaps my legs and turns the pedals for me) done then we had to kill some time before the Avastin drip. We got back to Silver Spring around 4 PM and I was exhausted.

I begin therapy again this Wednesday and plan to switch up to a Wednesday/Friday schedule. I have also gotten off my duff and scheduled my next PET scan for April. I am WAY behind, it was supposed to be taken care of back in October. I am feeling pretty positive that I am still dancing with NED (no evidence of disease) but I have to actually get the deed done even though I completely dread waiting on the test results. Between the MRI test results and PET test results I might consider using the Valium they prescribed me to lower my anxiety.

Still no temporary housing and only 13 days left in our house. You can imagine Dave and I are stressed out. I cannot even begin to go into the entire saga of what this rental house search has become. Let's just say finding a home for a family of 5, with a mom in a wheelchair, a dog that is 80 lbs (okay I am being kind to Maple), and a short term lease is a challenge. Everyone send your prayers, good vibes, and positive thoughts that something will turn up soon.