Friday, November 2, 2012

Week 9, 10 & 11

I am sorry I am such a slacker on updating here. I really regret putting this off so long. I've started and stopped this blog and it just keeps getting longer because more time has passed. I apologize for how long this is and how disjointed it might seem as I have written it at various stages in the past couple of weeks.

Had I posted 2 weeks ago I was going to post that things seemed to be returning more to my 'normal' and that I was going about my days as usual. I did start to develop a few more tiny painful blisters on my right ring finger (same finger as before) and this is about the same time frame as when the first round started - about 3 to 4 week post-infusion. Luckily they have not progressed and no more have formed.

Most notable from week 9 is that my crash from the motorized bike ride was short lived. At least by my standards. I had fully expected to be feeling it for a good week. Maybe I didn't overdo it as much as I thought I did or maybe I recovered better but I was down and out Saturday and figured I would need to be in bed all day Sunday as well. That didn't happen just because I had too much to do and then Monday I had appointments and had some errands to run. Surprisingly I did ok. I mean I didn't feel awesome - I never do - but I wasn't in a huge crash like I had been. So that was nice.

We ended up going out of town on Thursday with some friends for a long weekend. Before we left one of my teeth started killing me. I've had a horrible time with dental work this year, all brought on from long term steroid use. I've had to have 3 teeth pulled and about a dozen root canals. The tooth that was bothering me was a tooth that had been root canaled but which the pain had never gone away from and was getting much worse. I went to see the dentist (he did not do the root canals) who took x-rays and said it was possible that there was a small infection near the tip.  Because of my immune system he prescribed antibiotics and I made an appt w/ my endodontist to take a look at what is going on.  I wasn't too excited about taking antibiotics because of my stomach pain but spoke with my Dr. and she agreed that I should take them.

So off we went on our trip; the stomach pain wasn't horrible. I mean I didn't love being on the antibiotics but did ok. My family and friends did some amazing hikes. I found some beautiful places to sit and take in the view. here's a sample of what I was lucky enough to see.

One issue I had was that the altitude was slightly higher than where we live. I have a hard time with high altitude mainly due to my adrenal issues. That meant I had to up my prednisone a bit which wasn't ideal but again, I did what I had to do. One day I tried to join everyone for what normal people would consider a super easy and short hike. I probably walked about 1/2 mile all together. There was a short steep incline that was very difficult. It made me a bit sad to realize how out of shape I was with my heart pounding like it was going to leap out of my chest. I sat down immediately and was very worried about PEM but I just rested while they completed the hike and then joined me for lunch. No major PEM to speak of but I was pretty exhausted from the weekend in general.

My teeth/mouth pretty much killed over the weekend and I'm not sure if may have had something to do with altitude changes. On Tuesday I saw my endodontist about the teeth pain. He did not believe I had any infection and really feels like I am having an inflammatory response. Again, the Rituxan seems to be causing these weird things happen - just like the horrible abdominal pain with no real reason. Or the blisters on my fingers. I was then sent to the oral surgeon to discuss a bump I have inside my mouth and to talk to him about the pain I'm having. The bump seems to be a fibroma and probably isn't going anywhere. He really didn't see anything wrong with my teeth but I did have a new sore in my mouth that he prescribed some rinse for.

(In hindsight it could be that I was at a higher altitude over the weekend that caused pain in some of my teeth).

One of the biggest things on my mind has been when/if to get another round of Rituxan. My CFS doc thought it might be worth waiting to see if I respond at all before getting another dose. My endocrinologist thought I should go ahead with it. I got in touch with my prescribing doc at the end of last week and he thought I should get it now and then we can reassess.  So I've booked my next infusion for next week. If I'm being honest, I'm not all that excited about it. It's hard to get excited about something that you know is going to make you feel like crap. And again, if I'm being honest, it's hard to be excited about this treatment when I haven't heard a lot of positive stories.

This week my whole family has been sick. I've also been very itchy. All over. The bug we have is like a cold but with waves of nausea. My daughter was home for two days at the beginning of this week and I've just been extra run down. Saw my ENT as well who thinks I do have a sinus infection going on so was put on a different antibiotic. Saw my dermatologist who was not overly concerned with the itching although did say that theoretically when the b-cells start to repopulate they could be overly active and cause itching. he did not think that the timing was right for this (3 months post first infusion) but since we have not measured my b-cells it is hard to know. Told me to try a different antihistamine and see how I do.

My most persistent symptom has been abdominal discomfort. It almost feels like it could be my liver. Although all blood work and scans have been fine for my liver, where I hurt is definitely in the pattern of a liver. I see a new GI next week but doubt there will be any new news from that. Hoping just to have someone on board to consult if/when things get bad again as I assume they will post-infusion.

Also I've had joint pain - mainly in my hips/sciatic region. Off and on - mainly off. But definitely is only since I started Rituxan.
Today the sinus pain is feeling a bit better. Hopefully am on the mend.

Will leave you with something I saw posted on facebook today and really identified with. What other choice is there?


At November 2, 2012 at 6:34 PM , Blogger Wildaisy said...

Thank you for sharing your experiences--including both the good results and the more difficult times. I hope this next round of Rituxan turns out to really, really work for you, with no painful side effects. That would make it all worthwhile.

At November 2, 2012 at 6:38 PM , Blogger Dsdmom said...

Thanks Wildaisy. I hope so too. It's exhausting being ill, as you are well aware!


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