Plan is back on track. Dad took me to Rush get additional mammogram screenings this afternoon. The doctor showed me that there were some nodules she wanted a closer look at but that everything is clear and they were able to get the baseline pics they needed since it was my first mammogram. She was able to give me the form I needed so that I could get that turned into Northwestern so they can request Cigna approval. I’m planning for that next week…..let’s hope Cigna agrees.
On Monday dad took me to the neurologist as a follow up appointment from the steroid infusions. The timing was good because I have been steadily declining. I can’t remember the last time I drove- I only remember it was to meet a friend for dinner a couple blocks away. I can’t go out alone now at all- I used to be able to uber. I now have to have friends meet me here for dinner. My friend Kim and her daughter have been sleeping over on the weekend which has been a huge help. They are also going to take my dog Zoe the whole 6 months during and after transplant so that will be a huge help.
I started using a 4-prong cane but need a walker- my friend Kim will bring me her dad’s next time she comes out. My fatigue is overwhelming, my balance is at an all time low- I’m holding on to stuff not with one hand but reaching out with my other hand now too. I feel like a bobble head doll. I’m taking extra antivert for the vertigo. The steroids have my muscles feeling loosey goosey when normally they are tight and hurt. Just taking a shower is kind of scary and I need a chair in there for now- thankfully I have a huge walk-in shower. Yet, even with all this….I know that I’ll be okay, this is temporary and the transplant will help. May isn’t that far away I can hold on. I just can’t decline further. So the neurologist didn’t like the decline, but he said that this can happen with steroids during the taper period. He said we can wait a couple weeks and see if I start to improve since I’m down to 1/2 pill now. I agreed. He said that if I don’t improve we can either repeat the steroid infusions or he can give me athcar injections for my adrenal glands to make their own steroids as kind of a more natural option….however that comes with a hefty price of $50k so it’s not a first course of treatment option.
Yesterday was the best day I had in awhile….I got in a whole 2500 steps which is really pathetic but when it’s been hard to get 1000 steps in a day it’s something. I was starting to feel a little hopeful that maybe this was starting to pass. This morning I had a very scary shower. I felt like I was going to pass out and I had to tell myself “get out of the shower.” I was able to get out safely and collected myself but it was a wake-up call. My dad suggested maybe my blood pressure was low. It may have been I did take it later at his suggestion and it was okay by then. My goal today was going to be 3000 steps and it looks like I will be meeting that goal after all since I did all the walking at Rush today. Usually I make little trips to get steps in, like one trip to the garbage chute, then another trip to get the mail, the end of the day I take out recycling.
I’m really hoping that this steroid coma I’m in lifts soon because I am anxious to get down to the workout room and push and lift some weights before transplant. And I’m tired of “moon face” but more than that my neck is just so tender. Sigh.
So for now…..I’m spending my time researching gluten free recipes and cooking. I’m even growing basil. And I’m finally able to tackle paperwork and get organized and focus totally on me and that feels great. Still feeling very grateful and breathing better than I have in forever.
Hopefully my next update will be with insurance approval. 🙂
The steroids are amazingly rough.. You might be having orthostatic hypotension .. When you stand up your blood pressure drops in your heart rate increases.. I feel like there’s twinkles in front of my eyes so that I can’t even see when it happens ..very scary..I know from experience… It’s like we need the steroids to help .. But the side effects from them are really difficult ..Sending love
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Thanks Deb I will have to keep an eye on that….that may have happened in the shower this morning…..I could see but I did notice my hearing decreased and the water started sounding faint behind me. I should’ve eaten breakfast and been up and about before taking a shower first thing.
Laura Engelen said:
Maybe I am not understanding what transplant??? is that the stem cell. I believe in natural approach. DId u read Doug Kaufman Know the Cause he also has a program to watch. I will find book & time of his show! You can also call in! Hang in there. Have u thought of doing a GOFUNDME account. Ellie this might really help I no u are not the person who would like to do this but a friend has to set up ????? Don’t no how to set up or laws or rules. Also a vendor/craft show which I can set up with some help from someone in Illinois. Its were vendors of direct sales companies & crafter & usually T-Shirts for MS for sale and a special t-shirt designed for you!!! and we can sell. Vendors give a % of their comission and a small admission that all goes to you. April would be good to set up. I have done shows before and this is what my journey is now. I also am doing one near mothers day in Berwyn area She needs $50,000. Some has been donated by go fund me and online vendor shows (which don’t go to well) People need to touch and feel and buy something instead of just asking for money! I no u are not up to this but this is the journey God has chosen for me! You do nothing! Just need someone there in Chicago pick a date and you just get to show up that day! I am glad that u have had help from family and others. I no u have expenses to meet above & beyond insurance. I hate to see that u are declining I makes me so sad. I’m praying for u. Remember u are a fighter!!!! Love u Laura
Yes it’s a stem cell transplant….it’s a bone marrow transplant and works like a blood transfusion with some extra steps. The difference is that using chemotherapy is what makes it work by taking down my immune system and giving me a new one with my own new stem cells that are grown and harvested before they have a chance to be tainted by my other cells. This is somewhat a natural approach in that they are MY cells….the procedure obviously isn’t natural but it’s effective. There is no natural approach that exists to prevent me from declining. This is the best chance I have to stop the disease in it’s tracks and even potentially improve. The decline I’m having now I fully believe is temporary. I haven’t thought of a gofundme account at this point I’ve planned for this and have a disability insurance policy that will pay for 6 months if they approve my claim and I’ve applied for disability with social security so I think I’ll be okay. You are so sweet to help people with fundraisers! That’s huge. I feel very fortunate- most people in my position do not have insurance coverage for this and are in need of $125,000 for a down payment for the procedure. Yes I am definitely a fighter and fully intend to fight for healthcare equality in insurance as soon as I’m stronger. I will be on an upswing before you know it….so stay tuned!!! Love you!