This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
Week turns into Month from HELL.....
It has been almost a month since I last posted yet it feels so much longer. My week from hell turned into the month from hell. Fortunately everything has turned out okay and I am hopeful things are going to settle down. As you are aware from my last post, I ended up having an exasperation which lead to the need for a 5 day course of steroids. We all know how much fun that can be! My chemo went off without a hitch. With the exception of those oh so wonderful side effects that you get from the steroids. Those lasted for quite a while. I seem to be responding well to the treatment though. I think having all those steroids just before my chemo really helped me bounce back....at least when it comes to my MS.
My blood sugars (BS) and blood pressure (BP) has still been high. My BP seems to be doing a bit better though. It is finally normal in the morning, but it still goes high throughout the day. My asthma has also been acting up. My guess is in part due to the fact I have poorly functioning lungs, and in part because of the poor air quality due to the fires in the area. Anyway, I had my follow-up with my pulmonary doc on Friday and he wants to start me on Methotrexate. It is not the typical treatment for asthma, but then again my body does not seem to respond to the typical. I am already on all the typical meds for asthma, but they only do so much. So, for the last several months I have been on low-dose steroids to help my lungs. This has helped in some ways but I am still needing to use my albuterol and my nebulizer much more than either of us would like. The side effects from the steroids as you all know can be a problem and so to be on them permanently....or until some better treatment is available is not really a good option.
The last month has been very stressful. I seem to be less able to deal with stress when my MS is acting up. It seems when I am not doing well, my body just can't handle things like I normally can. So, this has been an especially difficult month as there has been a lot of stress, not just for me but for everyone around me. Just over a week ago my grandma was admitted to the ICU. She had a heart attack, pulmonary edema, and her kidneys were not functioning properly. After a couple of days in the ICU she was able to go to the step-down unit because she seemed to be doing better. But the second day in the step-down unit, she had more chest pain and her BP was way to high so she was put back in the ICU. The docs were worried about doing an angiogram because it could be risky due to her kidney function. After this second trip to the ICU though they decided the risks did not outweigh the benefits and that she had to have the angiogram. We could not have asked for a better outcome though. They were able to find what has been going on with her and it can be managed on an outpatient basis with medication. We could not be more relieved at this point. She was then sent back to the step-down unit. She did develop some anemia and needed to have both iron and blood, but after having that she really seemed to perk up. Friday they let her come home, which was probably the best birthday present I could have gotten! :)
As if that was not enough, my friend Danielle's son has really been having a hard time. I told you about him, he was diagnosed with Chiari Malformation and it was significant enough that they had to do brain surgery. He seemed to do good at first, but he has had some complications. Fortunately he has a great doc, who is considered one of the best docs for Chiari in the country. As difficult as all of this must be for him, Danielle has been under so much stress. She is unable to work right now and so she has no income coming in. She has been off for a month and well, the bills don't pay themselves. With the complications he has had, they have had to make several unplanned trips to Seattle which has been very expensive. I set up a fund at the Bank of America for them (under the Coleman Family Fund) but no one had donated anything to them. The news station even did a story about them and still no help. It has to be so difficult. As if that was not enough to handle, she ended up having to go in for surgery herself just over a week ago. She had an infection in her breast and so the doc had to go in and remove the lump and infection. Now she is trying to recover while taking care of everything else. How much can one person really handle?
As a result of this, we have been busy trying to get her business up and running. She has had this business for a while now but did not really have the time to do much with it. It is mainly online, but she has a home office as well. We are hoping that she will have a good response from it so that she can then work from home and be more available to him while still having a way to support them. Anyway, if you are able to help out, or are curious about the products she has, you can check out her website at www.mysticmtboutique.com It is going to take about 2 weeks to get everything up on the site, but there are some products up now! :)
So, as you can see the week from hell turned into the month from hell for pretty much everyone. I noticed a full moon the other day, maybe that has something to do with it. ;) Today is a new day though and everyone is back at home, seems to be doing better, and we are all hopeful that things are going to settle down. We all have follow-ups in the upcoming week so I will keep you updated. I hope you are all doing well. Take care!
All personal text & images are protected under copyright law. 2006-2009
About Me
- Jaime
- I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).
MS Advocacy
MS Bloggers
MS Donations
MS Links
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)
4 comments:
Wow, ever since I started reaing your blog you have been having misfortunes. I'm so sorry. Hopefully it can only get better from here:)
Well, let's leave it at a month so we do not have you grinding through a YEAR from hell, mkay?
When we visit the pits of hell, at least we know there is no place to go, but up :)
You might know all of this but; I am going to mention it anyway.
Methotrexate works wonders, but the risks are high. Make sure you have your blood count check regularly while on methotrexate because it weakens your immune system. Most importantly make sure you are taking folic acid while on methotrexate.
I felt so much better when I was on methotrexate, unfortunately, my Neuro did not have me on folic acid while I was on it and I had a toxic reaction. A pharmacist later told me I should have been on folic acid while taking methotrexate.
New moons, better days. We all pull for ya.
Post a Comment