The Sour
1. IV Flolan Treatment: After the second surgery(amputation) on my non-healing finger tip ulcer my rheumatologist thought it was a good idea to go in for another round of flolan. I don't think I've written much about this treatment, but...basically...IT SUCKS. The effects of the treatment itself aren't so bad..some headaches, nausea, dizziness and well the worst one is excruciating but very temporary jaw pain when you salivate. Eating is quite painful while on this medication. But the hope is that it will improve blood flow and thus heal my finger and the ulcers once and for all.
However, what's really the worst part is the fact that I have crappy veins- so during the 5 day stay at the hospital, I had to have 7 different IVs because they kept getting infiltrated...if you don't know what I mean by that just imagine someone pumping a stinging, burning liquid into your veins. The IV tube thingy basically breaks inside your vein and it hurts like hell. I had asked to get a PICC line this time around, but to no avail...nurses didn't know what I was talking about and insisted that my veins couldn't POSSIBLY be that bad...yes. they. are.
Regardless, I got through it. Like I do much everything else. And I was so grateful to have the company of my husband, my mom and a few of my friends that stopped by to bring me goodies. So, that part was a SWEET!
2. Lupus Flares: So, now that I am a bit "lupusy" I get to deal with lupus flares. Which, in my opinion are so much worse than Sclero flares. At least with sclero all I get is really tired and some mild muscle soreness- like as if I'd worked out too much. Lupus flares? Whole other story. Joint pain and swelling. Stiffness. Fatigue. Shortness of breath. Rib pain from lung inflammation. Chills. Fever. Blegh. And the worst part is, I'm still trying to figure out what triggers my flares, so as of right now they just happen. Go to sleep feeling fine, wake up swollen and in pain. No fun. And I never know what joint(s) will be affected. So..one more thing to learn to manage, accept and deal with.
3. Toxic Drugs= No baby: Well, due to the fact that my lungs refuse to heal themselves and other drugs have not been helping...I am back on the dreaded Cell Cept. My doc was trying to be considerate of the fact that Lupe and I were still trying to get preggos so he was willing to just try and increase the Imuran (a safe drug for pregnancy) to see if that would do the trick. But, when I told him that I just wanted to get rid of this annoying chest pain and inflammation he said I had no other recourse than to get back on the Cell Cept (actually he wanted to put me on methotrexate and I said hell to the no).
I was on CellCept pre-trying to conceive and I responded really well. Helped get all my symptoms under control, I was running, still working out in the real world and felt overall great. Was also able to get off the prednisone. So, I know the drug works. I know it allows me to lead a relatively "normal" existence...it does however...prevent me from being able to get preggos. Well, at least I shouldn't get preggos while on it. Lots of risks to the fetus. And as much as I KNOW my health comes first, and I shouldn't be selfish and put mine or a baby's life at risk and "don't I want to be healthy" and blah blah blah...it still doesn't stop me from wanting to be a mom. From wanting to prove to myself that my body can still do SOMETHING right. Other sclero patients (sicker than me) have gotten pregnant and had normal, healthy babies and pregnancies. Why can't I? So, it still doesn't stop me from feeling like a failure.
I've spent the last three years trying to get healthy to have a baby (hell just get pregnant again) and all I've managed to do is get sicker. So, I have no choice but to suck it up, take the meds (for at least 6 months if not more) and then reassess my situation and decide if it's safe to try for a baby. It's been a rough few weeks trying to accept this, but I will focus my efforts and energy on other things: work, writing, travel and just enjoying my marriage. You win some, you lose some...but this fight is still not over. The Mendez's WILL procreate! (We're too cute and talented not to)
4. Kany West- is stupid and needs to go F*!k himself. To understand why, watch this insulting and awful video HERE. Don't humiliate disabled people. PERIOD. I will not waste anymore energy on him.
The Sweet
1. Finger Healing- My fingertips are actually healing! My stitches came out earlier this week and the doc said it looked good so far. Risk of infection is minimal at this point and aside from some physical and occupational therapy sessions it is on its way to being ok! I have been put on Viagra (does not do for women what it does for men though...this is for blood flow) and that seems to be helping. Haven't had as many Raynaud's attacks since I started it. And the new ulcer that had developed on my left index finger is also drying up and healing. (yay for small victories!)
I actually think my finger stub is kind of cute: (pics below may be too graphic for some readers, scroll down with caution)
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| Some of her dresses |
3. Scleroderma Foundation National Conference: I know, I know, this conference happened like ages ago (July 25th-27th) and I had yet to blog about it. Sorry! I've been dealing with this stupid finger for the last two months and it has stolen most of my creative energies for writing. Anywho...it was a great experience. I was able to connect and meet with some great people from all over the world, made some new friends and learned a great deal about scleroderma research, new meds, treatment options etc.
I will say, it was a little overwhelming and exhausting to spend 2 full days doing nothing but talking about pain, pills, symptoms etc. and telling my story over and over, but it felt good to know that there is a community of folks out there just like me. And that overall, I'm handling all of this fairly well. (Many people are so sad, which is understandable..but at some point you just have to try and stop feeling sorry for yourself)Being at the conference reaffirmed my desire to keep up with my blog, finish my damn book (about my sclero journey) and just keep trying to help others with chronic illness and pain.
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| At the Beach |
It was also just a really great mini-vacation with the hubs (the only one I got all summer!). We went to the beach, ate yummy food, cuddled, explored the city and had a grand ole time. You know, never thought I'd say this...BUT...I really like California and if I had the means to live there, I think I would. (My hair looked fabulous the entire time I was there! Weather was amazing!)
4. Pregnant People: Even though I am not one of them, I am truly happy for all the ladies in my life that have recently shared the news that they are expecting or are about to POP! Congrats to you, babies are awesome and I can't wait to meet all the little ones very soon! (I'm not one of those bitter chicks- not anymore- I understand that every woman has her own fertility journey and it's useless to compare. Every "body" is different. I can be happy for those who have realized a dream I pray for daily, maybe some of that good Karma will come back to me-I can only hope.)
That is all for now! Next time: a post on the types of conversations sick people have with healthy people vs conversations they have with other sick people-promises to be a post full of laughs. :)
Hugs and chocolate!
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