Not such good news lately…

Well..My mom spoke with the nurses and doctor’s taking care of my Grandfather. It does not look good..they don’t think he’s coming back home, ever..I’ve just been in such shock and disbelief. None of us could sleep last night, just can’t believe he’ll never be back in his apartment again. I won’t join him on the porch outside when its nice out, or grab breakfast with him. When my mom came to me the other day to tell me what was going on she said she unfortunately was not shocked. She said she had a feeling..she felt he hasn’t been completely right even since surgery. I was surprised because I thought he did well when he was in ICU. She said yes, but he was still confused at times then. I figured it was his Anesthesia he was given since that can take up to a couple weeks to ware off…she said nope, the tumor was already growing back. Her and her brothers already decided their not going to put him through chemo & radiation, he’s been through enough. He’s 80 and its not worth it if he may only get a couple months out of it. I don’t blame her..if it was her or my dad I wouldn’t either, unless I knew they had at least 2yrs or more of a good life yet. My mom is already trying to find arrangements for him at a facility like a group home for 24hr special care. We would love to bring him home here its just he will need round the clock care. My mother is devastated, she came to me early this morning since I was up most the night not sleeping with puffy eyes and tears. She said its killing her already because all he keeps saying to her when he’s been awake is that he can’t wait to come home to his apartment and that he wants to have a big party with all his friends and go on a family vacation. Just breaks our hearts:-( 

My mom spoke with a group home that is litterly right behind my parents house, within walking distance and they said they have room for him when Moss decides to release him. We just don’t know how were going to tell him…he’s going to be devastated.  My mom told his girlfriend Vi last night..she didn’t take it too well, which is expected. I think she wanted to believe like some of us who have been in denial that he was getting stronger. He’s off IV fluids for now since his blood pressure has been a little more stable. The doctor said his platelets are low though, which are definitely clear cut signs of his Cancer. The nurses had been giving him Ritalin, a drug normally used for to calm down kids with ADD. Apparently in grown adults it actually has the opposite effect and wakes them up. They did get him out of bed the other day to use his walker so that was a good thing. He even went to the dining room with my Aunt and Uncle and his girlfriend. Both my Aunt and Mom said they have noticed his confusion. He often thinks lately he’s in his apartment and thanks them for stopping by to visit or says he needs to go to bed to get up for church tomorrow. Then other moments he seems clear. The tumor has brought out sides of him though, kind of like Altzheimers, that we’ve never seen. He’s gotten angry and he’s suddenly a comedian as well. Anyway..on a good note my mom finally spoke with someone from Temple Hospital after receiving a letter in the mail about his fall. She got a REAL APOLOGY and they seemed honestly concerned and said they felt very sad for him and my family right now. I think it made my Mom feel a little bit better after his fall and all.

The best thing we can all do now is just pray for him and give him the comfort, love and care from us that he needs. I know this hasn’t completely sank in yet for me…I was over his apartment the other night looking at a scrapbook album my sister is making for him of the cards he’s received and pictures and just burst into tears. I found myself praying to God and my Grandmother asking why..I guess there never really is an answer as to why things happen the way the do. I just can’t get over how unlucky this family has been with health problems over the past 2-3 years, its been one thing after another. I even had discussions with my Mom and Husband this week over my IV treatment, its been almost 8 months now and they said they are having a hard time watching me go through all of this, especially with Pop Pop being sick. Their worried its going to jeopardize my health worrying about him. What am I to do though???? I’m not stopping my treatment, I’ve come to far.

I did have a bit of a mental breakdown this past week, but I was undergoing a lot of stress on my body due to another UTI from the Lyme and I was highly frustrated with my Doctor and her office. I had a fever and all with it about tow weeks ago and was in a lot of pain.  My Husband and Mom were extremely frustrated, along with myself because I couldn’t even get a hold of anyone at my Doctors office to call in a simple script. They have been known lately do be pulling this crap with their patients. In fact over the past year my family and I haven’t been feeling as confident about my care there. We were giving them a little break since my Doctor was enduring some hard personal things goign on in her life. Now thought after the grief I went through almost two weeks ago, and a very upsetting phone conversation that was COMPLETELY out of line that I had with my Lyme Doctor (of 5yrs now) and some of her staff, ultimately lead me to hanging up the phone and crying in disbelief. My Husband and I were so angry and hurt do to the lack of responsibility she had and concern the office has in general for their patients. I mean my Mom and I have been driving our butts their every Tuesday for 2 1’2hrs, which by the way takes up our WHOLE DAY, and shelling out well over a 2,000 per month for care!! Now, unfortunately due to the lovely medical system the CDC and the IDSA has created for Lyme patients like myself, no Lyme Literate Doctor will take insurance for reasons of loosing their license or being harassed by insurance companies for treating their patients with more than the typical 14day regimen of antibiotics. Believe me, people who get sick enough with Lyme WILL PAY for a Doctor like this because they not only are up to date on all the new treatments but are willing to fight for their patients even though they know their medical license may be at risk because they see the world of good their treatment has done in saving lives.

However, I want an equal amount respect and care for the time and money my family and I have spent traveling to see my doctor! I just can’t get over, after all the years I’ve been seeing my Doctor how much has changed in her office in just a matter of a year. Its disorganized, understaffed, and she has officially started treating her old patients like crap and the new ones (whom by the way, doesn’t even have time to properly treat them as well as she should be medically) like royalty!

 My doctor by all means, I have always HIGHLY RESPECTED. Which is why I have stayed with her as long as I have. I mean, she diagnosed me, basically saved my life from many years of not konw ing what was wrong with me, and she even got me into remission and some of my life back that I hadn’t had in soooo long.  I litterly put her up on a pedestal beause SHE IS THAT GOOD, Scientifically she is the best there is out there for lyme. Her bed-side manner was never the best but I had had many doctors who were but called me crazy and that I was imagining my pain, that it must be depression. Problem is.. if you decide you want to save the world of Lyme, and take on new patients, higher more staff, higher an assistant, whatever it takes to get the care that your patients deserve after the time we take breaking our bank accounts when there is no money to even give in the first place. If you ever feel like your health in in jeopardy and your care is not what it is, move on the Doctor is not worth it!! Believe me, I’ve been there, done that.

Now…I’ll be doing it again. I’m staying with my Doctor until I can find another one closer to my area. I already called one that came highly recommended from several friends of mine who have lyme themselves or people in their family who do. However I had to be put on her waiting list, though my mom said the Secretary said it shouldn’t be too long.  I want to finish out my treatment with the IV Antibiotics so I’m just going to find a Lyme Literate Doctor in the PA area whom I can do just that with. If I don’t see results then I will move on to other things. The hardest thing about this is Lyme treatment is that it doesn’t come cheap, my Husband and I just received a bill in the mail the other day saying we owe a little over $1,000 for home care that I had for only 29days (5 visits) that  my Insurance has refused to cover….luckily I have wonderful parents who have been able to help us out..although I’m not sure for how long. With the way the economy is right now I’m not sure what the outcome will be for me with treatment.  I’ve even met people who have lost their homes or have filed bankruptcy due to having Lyme. Its a very scary and financially crushing disease.

 I really would like to give this treatment a full try if we can afford it, as well as my parents. We’ve had many conversations with them about it, and for now my Husband and I have put our dreams of having a home on hold until I’m well. Its a hard decision for all of us, however I do feel the worst for my parents sinec they are shelling out the majority of the bills since I can’t work and am not on disability…I’m thinking of filing but I may have to get a lawyer, somehow they don’t see Lyme as a disability. I’ve talked to several people and they warned me how horrible they will be to me. I don’t get it…I’m unable to drive, use a cane and wheelchair half the time, and can’t work?! Makes no sense- always amazing to me how corrupt our health-care system is, yet I’ve known of people who have been on disability who have the lesser of my problems and have received it no problem.

2 Responses

  1. Good post and I do like to share such content so others should be aware and precaution to handle any such situation.
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