Here we are, another week come and gone, and I’m still not feeling any better. If anything, I’m feeling worse.
Since I began Humira 3 weeks ago, I have still felt pretty bad. I can’t believe I have to do my third injection this upcoming Wednesday. Like, really? Already?
I have continued to have persistent bowel pain, where you can just feel something wrong on your insides, and I just feel ill constantly. I have had more vomiting, more rectal bleeding, more migraines, more sleepless nights, but at least my hands are starting to feel better, right? One problem down, a million to go?
After my Humira last week, I did not feel up to going to the Crohn’s and Colitis CCFA fun day at Churchill Downs. It was very sad having to cancel my plans to go because I really would like to meet more Crohn’s people, especially in Kentucky. It would be nice to know at least a handful of people near me who are suffering as well. But alas, we decided to stay home and watch the Bengals game on the couch instead. And to make me feel worse, we lost AND I lost in fantasy football this week.
On Monday, I had my MSK appointment to receive corticosteroid shots in both of my hands, but if you follow me on Facebook, then you already knew that. Remember, I have been suffering from hand pain and carpal tunnel issues since January, with multiple diagnoses and treatments I have tried. I have done stretches and paraffin treatments, cold ice packs, and I had worn my hand braces and avoided using my hands as much as possible until they began to fall apart on me.
Since my hands continue to hurt, it was time to try the steroid shots.
For that, the doctors used an ultrasound machine to look at the inflammation inside both of my wrists, fun lube and all. We couldn’t find too much inflammation on my left wrist, but they didn’t want to risk not giving it a shot as well. Note – If you get steroids, you have to wait 3 months before you can get another.
So, rather than not giving the left hand a shot, and having to wait another 3 months with pain, if not longer, the doctors decided to go ahead and do both of my hands at once; our original plan.
The doctors put big globs of jelly on both of my wrists and used the ultrasound imaging to guide the needle into the pocket of inflammation they wanted. Philip played photographer and got me all of the fun photos. (Thanks, babe!)
My left hand was done first, and then my right.
Let me tell you, these shots did not feel good, and the doctor performing the shots made me slightly nervous. She kept asking the attending doctor numerous questions, where to put the needle, etc., and that made me nervous even before we began. She did fine with the shots, thankfully, but I did feel her moving the needle around in my right arm a bit.
As the doctor was injecting, the medicine slightly hurts and it feels as if someone was running over my wrists with a truck and then stalling when directly on top of them. The weight, it was like heavy weights on your arms and IT HURT. I sat with clenched fists and tried not to move or make noise, but it’s difficult when you are watching the needle get closer and closer to the skin, in addition to the anxiety I was getting about the doctor being nervous and since I knew it was going to hurt either way.
The injection containers medication, as well as a numbing solution, so both of my hands went numb immediately after getting the shots, and funny enough, the doctor who was ‘nervous’ placed the bandaids a good 4 inches away from the injection site? She missed it entirely and I was clearly bleeding? We laughed and were very grateful that she had had better aim with the injections, and then we were done. I didn’t shake the doctor’s hands goodbye, and I couldn’t even lift a coffee cup as we were leaving because my hands were so numb.
It was a very peculiar feeling like my hands were not real or my own. I kept rubbing them together in small circles and it gave me the pins-and-needles feeling. I could not even cook dinner that evening, so I am glad I finished my homework early Monday afternoon, or else I would not have been able to complete my assignments on time. And on that note, I finished another week of class, and I just completed another course (with 95%! ), so I am that much closer to getting my degree. Estimated completion date is set for July 10th!!!
Monday evening after the shots, we ordered a pizza for dinner, which was no good for my stomach, anyway, and I spent the rest of the evening vomiting dinner and stomach acid. It has been 2 months or so since I began throwing up and having that issue, so I am definitely tired of puking and I am exhausted from the repeated vomiting. My back hurts and my throat hurts, my chest hurts and it usually gives me a migraine.
Thankfully, though, I received my new migraine medication, Fioricet, and this week I also received my the Lexapro. Hopefully, that will start curbing my depression and anxiety, and the Imuran will boost the Humira.
So now, I have all of my medications I am supposed to, but I won’t go over them again, as I’m sure you were bored to death last week hearing about them all. (You can see that list here.)
In addition to my shopping list of medications from the VA, I have also received some essential oils, because I have read that they can help with issues like insomnia and migraines. Every little bit helps, right?
I am SO beyond ready to feel better, I am almost too willing to try anything for relief at this point. I even had to order a pill case this week, because I have AM and PM medications I take, and I definitely need more organization with them. And I like super cute bags, so, it works.
I received my new shipment of Humira, so that is always fun receiving a cooler dropped off at my door. If I am going to be getting these more often, I need to find a way to use them. Or better yet, I should see if I can pick up my prescriptions when I go in for the bi-weekly blood draw, and try to save the VA that shipping cost, as I am sure it is not cheap for a box that size.
Otherwise, this week has been boring. It has been another week of the same issues.
I did almost have a minor breakdown this week, with the news about the VA approval for IVF treatments. But, I have to clarify before anyone brings it up to me or offers it up for my cure-all, this IVF4Vets approval is NOT going to help our specific fertility & infertility situation, sadly.
This news was a false hope for some of us veterans, like Philip and me.
This ‘IVF4Vets’ congress ruling, it only covers treatment for veterans who have infertility issues related to their service-related injuries. Who is the judge of what constitutes as infertility and what is considered service-related injury in that context??
“Passage of this bill will allow the VA to extend that care to those whose injuries have impaired their ability to have children” as quoted from the ASRM – American Society for Reproductive Medicine.
This Appropriations Bill will include “fertility counseling, adoption reimbursement, and ART services”, but only to veterans suffering from service-related infertility according to the ASRM Office of Public Affairs, as published in ASRM Bulletin (Volume 18, Number 26).
What about those veterans with a low or no sperm count? Or those women veterans who cannot produce their own eggs, through no fault of their own? What about those veterans considering adoption, but will not be reimbursed due to their individual illness causes?
Because our specific issues are genetic and no one’s fault, then it’s safe to say our treatments will not be covered by the VA healthcare systems.
Although I am happy for all the people that it will help to bring some hope for a family, I am still sad for me and our infertility journey.
IVF and infertility treatments of every kind should be covered for ALL veterans, just like healthcare is.
My Crohn’s disease is not service-related, as far as I know (could have been all of the Navy’s many uses for Motrin and Ibuprofen), but they still cover my treatment costs? My medications? My doctor visits? The scopes? Therapy? Years until diagnosis, and I haven’t been charged but an $8 co-pay. It’s ridiculous the stipulations and fine print for care.
I get my birth control from the VA, but I cannot get my IVF, ICSI or IUI treatments covered with the VA? You would think those treatments go hand-in-hand, and if they can afford to keep me infertile, you would think they would help me in my fertility journey as well.
But no, we have to go to an outside source and pay out of pocket, because fertility treatments are not something covered by the VA, at least not for veterans like us, who did not get injured but are still suffering.
There should not be stipulations for who can have help in creating a family with our VA Health Care. Yes, this week’s decision was a step in the right direction, but I believe they forgot a majority of their target audience, those of us not in combat, those of us suffering from ‘genetics’ or ‘environmental’ causes.
Why is my fertility any less important, considering all parties involved volunteered their lives equally, to fight the same battle, to be apart of the same team? I volunteered my life, as well as Philip, just like everyone else. Why is my journey to conception not as validated? Because I was onboard a ship and not in combat? Why does it have to be a military-related problem in order to receive treatments and help to start a family?
In my opinion, there could have and SHOULD have been more done, and congress is to blame. They did not think about the majority of veterans, those without service-related injuries, who are seeking fertility treatments with issues beyond their control, but I’ll end that rant here and hope that someday ALL veterans will be included.
For the rest of the week, I suffered from puking all night insomnia every night, but at least I got a lot of my writing done in that time. We decided and began working on our Halloween costumes, I painted a little and finished some product review, and I did some online shopping just in time for October. I did create a new logo design this week that I’m obsessed with, so I would say it was more productive than most weeks.
So, as always, It Could Be Worse.
I would like to thank everyone who has taken the time out of their busy schedules to contact me, your support is truly appreciated and it makes me feel like I’m not so alone in spite of it all.
And as always, any information you’d like to offer up about Humira or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!
Not only can my blog be found at MaryMHorsley.com but it can also be found at ItCouldBeWorseBlog.com !!
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Thank you for reading, and for keeping up with My Crohn’s Journey.
More Info On Crohn’s Disease at
www.CCFA.org & CrohnsandColitis.com & crohnsdisease.com
Previous Posts on It Could Be Worse:
Here I Go Again – Humira Wednesday #2
I don’t know if you joined My Crohns Team on Facebook. It’s a support page for people with IBD and a lot of people talk about their Humira and other biologic meds. The only thing I know about Humira is that it can take several weeks to work. So I do hope you start to see some improvement soon but don’t freak out if it’s not overnight.
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Oh I understand that it takes time to start working. I have read anywhere between six weeks to 3 months if not longer, and I’m taking the Imuran, which takes 3 months to work as well. It’s just been a long two years already going on 3, so I’m ready to be feeling better. Thank you for the suggestion I will find that team on Facebook! Thank you!!