Here we are, April 23rd, still in spring, and we have set a major record for the wettest spring ever. We came close to setting the coldest record as well. No surprise for any of you living in Chicago. Although, it looks like after this week we're heading for a turnaround and the 70s are on the way.
On April 18 I finally had my prolapsed areas propped up where they belong, inside the body, with a sling. Surgery went well with minimal bleeding, except that I required a catheter to go home with for four days. Yesterday I got the catheter out and let me tell you how wonderful it is to pee in a normal amount again without even pushing. If you ever had this, you would know what I mean. As for the bleeding, I received platelets ahead of time and I'm back on the Coumadin.
Before the surgery, I went for an ultrasound to check on the blood clot status of my legs. Surprisingly enough, after 45 minutes, the ultrasound tech was unable to locate any clots. So, it has been determined that the type of blood clot I produced is caused spontaneously and goes away spontaneously. While this may sound good, I am at a 30% higher risk of producing further clots not related to surgery. Now the plan is to keep me on blood thinners indefinitely but we will reevaluate that in about a year. The good news is the type of blood clot I produced will never cause me to have a stroke to the brain. Instead, it's the kind that goes to the lung, which is better than the brain and I have a filter to catch it. I just need to be aware of any leg swelling or pain reoccurring. It is truly amazing to me that a clot that went from my left ankle to the top of my rib cage could spontaneously go away.
As for my weight, I still am up 20 lbs., yet we had to increase my steroids both prior to and after the surgery. So hopefully sometime by summer I'll have some hopes of getting my body back.
Following the surgery, they basically told me to take it easy for the next 4-6 weeks and that any increased activity would cause more cramping and pressure and bladder spasms. Guess I should put my vigorous aerobic activity on hold, right? He he he. As a matter of fact, I was just joking with the kids that when they take the dog for a walk they should take their mom for a walk, too, so that at least I'll have some form of exercise.
I have yet to get to my neuro and kidney scans this month but hopefully by the end of May I'll have that all completed.
As for my eye, that's a chapter in itself. I've had more bad than good days this past month. I saw the doctor two weeks ago and he sees no reason for the changes by looking at my eye, but said it's probably due to glaucoma or immeasurable tumor growth that's causing further optic nerve damage. It has been very dark more than light and I feel like I'm living underground right now since it's so pitch black and there is no contrast. It's been very hard to navigate my house on days like this.
I have been trying to use more of the tools that the state has provided me to get by, yet I think a lot of it needs continued practice and I need to improve in my computer skills. Last month I mentioned updating my iPad to incorporate Siri but I was encouraged by multiple visually impaired specialists to get an iPad 4 and have it set specifically for all my needs, with all of my files and education apps, so I did. This also enables me to talk to Google and the Internet. I still need to take a class from Apple to learn more ways to use it for my benefit. I used money from the GiveForward collection to purchase my new iPad, so my thanks go out to everyone who contributed. I should be able to get cane training started soon.
My new internist had set up for a social worker to visit and look into getting further aid for help in the home and driving, yet again this avenue was turned down. Sadly enough, it seems to be more abused than used for people who really need the help. I have decided to just go ahead and hire somebody so I can finally get my house in order and figure out a better system, as it's been seven months and I am not foreseeing my vision coming back. (Still, I keep praying for my miracle.) Presently I'm looking for any ideas as it would be much easier to hire somebody who I know I can trust to be in my house and know that they would not be walking out with things that belong to me, because I wouldn't see it. Maybe a college student over the summer. I'd like to clean out closets, organize my clothes and paperwork, and organize my house in general. I know the state can give me a list of personnel and it recommends I pay the going rate of $11.55 per hour, which isn't that bad. I just need to find a good match. If you have any ideas or suggestions, send them my way or call me.
The positive side of my social worker visit is they now send a nurse to my house so I don't need to go to the hospital every week for blood draws, which saves me and my driver something like 1.5 hours per week. And, I get my results much more efficiently, within the same day, by email.
Steve, Alyssa and I recently went to a support group in Carol Stream for the visually impaired and their families. It met for two hours and basically gave everyone the opportunity to talk about some of the stress areas that they found difficult to deal with, and those that have been visually impaired a long time helped by giving suggestions. The facilitator herself is almost completely blind so she knows first-hand how to deal with things of this nature. I later found there's a small support group that meets monthly in Mundelein. Other than that, the only places that offer support groups are nursing homes. I plan to attend the Mundelein group and find out if they have support services for the family as well. Not only am I finding it difficult to adapt to losing my eyesight, but my family is having a difficult time dealing with my condition, too. My vision loss affects not only me but everybody in my family. The only way I think you can approach it is with everybody working together. There's got to be a way to do this without me feeling like a burden, because that's the hardest part. I know it's hard and it sucks, but this is the way it is and we have to deal with it.
Tyler is graduating on June 7 and I gave him the option of having a party or taking a trip as a family, and he thankfully chose the trip. We're presently looking at a possible cruise or beach trip. Do you think the Gillespies could have good luck on a Carnival cruise ship???? They're practically giving these cruises away. Curiously, I'm the one looking for a destination and I'm the one who can't see. I'll see if my Aunt Jan and Aunt Winnie, the travel agents, have any good ideas. Alyssa gets off school the same week as Tyler, and Steve's parents are coming in for Tyler's graduation and Alyssa's dance recital. We'll leave on our trip shortly after that.
We should have many May flowers after our April showers. I look forward to getting out of my house again soon. I hope to see a lot of you this summer as we finish up our last month of school.
